Evaluation of Three Group Support Models Developed for Parents of Children [607988]

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PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER: INVESTIGATION
INTO BEST PRACTICE INTERVENTION

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PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER: INVESTIGATION
INTO BEST PRACTICE INTERVENTION

Aude Etournaud

A thesis submitted in partial fulfilment of the requirements of the degree of
Doctor of Philosophy
Bond University

March , 2017

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CANDIDATE’S DECLARATION

This thesis is submitted to Bond Un iversity in fulfilment of the partial requirements for
the Doctor of Philosophy degree .
This thesis contains no material which has been accepted for the award of any other
degree in any other University and, to the best of the candidate’s knowledge and belief, it
contains no material previously published or written by another person except where due
reference is made in the text of the project.

Signature
Date: 06th of March 2017

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ABSTRACT

Parents of children with Autism Spectrum Disorder ( ASD ) are reported to experience
greater levels of stress, anxiety, and depression than parents of children with other
developmental disorders or physical impairments. This group of parents, which presents
mental health professionals with unique support needs, is receiving increasing attention due
(in part) to the reported worldwide increase in ASD prevalence. Australian figures suggest
that approximately 115,400 Australians (0.5%) of the popu lation were reported to have ASD
in 2012 (SDAC, 2014). The research demonstrates that formal group support constitutes the
most common method for assisting parents of children with ASD to deal with their children’s
autism -specific difficulties and their ow n mental health challenges. However, the literature
which evaluates the effects of formal support groups reveals substantial variation in relation
to content, delivery methods, and data -collection procedures for monitoring any changes to
parent functioning (as a result of parents attending group support). This variation has
contributed to poor clarity on what constitutes effective formal group support for parents of
children with ASD , and limited translation of evidence -based support group processes to the
professional field.
Study 1 sought to investigate the question of which model of formal group support
(i.e., broad topic area) might be best suited to meeting the emotional and psychological needs
of parents of children with ASD by delivering three six wee ks groups, clearly differentiated
in content (i.e., Functional Behavioural Assessment Training Group, Skills Training Group,
and Combined Group), but kept equivalent in relation to delivery format, timing, and data –
collection procedures. Those three groups were delivered to 36 parents of children with ASD,
and changes in parent mental health (i.e., anxiety and depression), parent -child relationship
quality, and ASD child challenging behaviours were measured across five time periods (i.e.,

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Pre-Intervention, Post-Intervention, Follow -Up 1, Follow -Up 2, and Follow -Up 3). The
results indicated there were no significant changes in parental mental health across the three
support groups. A reduction in the frequency of challenging behaviours was reported across
time for all three groups, and participants attending the Skills Training Group reported an
increase in the quality of their relationship with their child.
The parent attendance records collected for study 1 indicated a strong trend towards
inconsistent participation across all three groups. This finding was substantiated in the
literature with researchers suggesting that the poor mental health outcomes repor ted by
parents attending support groups are associated with low attrition and low participation rates.
Consequently, study 2 investigated the specific aspects of parents’ lives that might act as
barriers to accessing support groups, by conducting semi -structured interviews with 33
parents of children with ASD. Interview findings propose reasonable large variation in the
factors which prevent parents from accessing and remaining engaged in support groups.
These findings lead to the recommendation that parent s undergo individual profiling to
understand their particular life circumstances and how these affect participation in support
services.

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ACKNOWLEDGEMENTS

I wish to extend all my gratitude to the participants, who shared their experiences with
me. Their dedication and willingness to help other parents of children with ASD made this
research possible.
I am very thankful to my supervisor and mentor, Professor Vicki Bitsika , for her
invaluable guidance and support. Her patience, compassion, and her w illingness to push me
to learn from new experiences have inspired me, and made this research possible.
I would like to thank my other supervisor, Doctor Phillip Fourie. His assistance,
wonderful sense of humour and his contributions have improved this proj ect.
Thank you to Professor Christopher Sharpley, his critical feedback and statistical
consultation have been truly appreciated.
The support of my parents and my sister, throughout this research, has helped me
tremendously. I thank my family and friends for their understanding, constant encouragement,
and most of all for their eagerness to celebrate every little achievement throughout this
journey.

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TABLE OF CONTENTS
ABSTRAC T ………………………….. ………………………….. ………………………….. …………………. (iv)
ACKNOWLED GEMENT ………………………….. ………………………….. ………………………….. (vi)

CHAPTER 1: Introduction ………………………….. ………………………….. ………………………….. … 1

CHAPTER 2: Description of Autism Sp ectrum Disorder (ASD) ………………………….. ……… 7
2.1 ASD as a neurodeve lopmental disorder ………………………….. ……………………….. 9
2.1.1. Possible biological underpinnings for ASD ………………………….. ………………… 9
2.1.2. Evolution of diagnostic criteria for ASD in the Statistical Manual of Mental
Disorders (DSM) ………………………….. ………………………….. ………………………….. 11
2.2 Current conceptualisation of autism -related conditions ………………………….. …. 14
2.3 Factors leading to variation in ASD symptom presentation and daily
functioning ……………… …………………….. ………………………….. ……………………….. 18
2.4 Comorbid Dis orders ………………………….. ………………………….. …………………….. 24

CHAPTER 3: Challenges Faced by Parents of Children w ith ASD Compared to Parents of
Typically Develo ping Children ………………………….. ………………………….. …. 32
3.1 Mental health impacts associated with parenting children with ASD ………….. 36
3.2 Physical impacts associated with parenting children with ASD ………………….. 39
3.3 Social/Familial impacts associated with raising children with ASD ……………. 43
3.4 Limitations from previous research findings ………………………….. ……………….. 53

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CHAPTER 4: Psychosocial Factors Associated with Enhanced St ress-Coping Responses in
Parents of Ch ildren with ASD ………………………….. ………………………….. …… 56
4.1 Coping style, social support and personal resilience patterns in parents of
child ren with ASD ………………………….. ………………………….. ………………………. 59
4.1.1 Coping style definitions and research findings for parents of children with
ASD ………………………….. ………………………….. ………………………….. ……………. 59
4.1.2 Social support definitions and research findings for parents of children with
ASD ………………………….. ………………………….. ………………………….. ……………. 62
4.1.3 Personal resilience patterns definitions and research findings for parents of
children w ith ASD ………………………….. ………………………….. …………………….. 69

CHAPTER 5: Major Models of Support Developed for Pare nts of Children with ASD …. 76
5.1 Informal group support models for parents of children with ASD ………………. 78
5.2 Formal group support models for parents of children with ASD ………………… 81
5.3 Methodological limitations of research -based informal and formal support
group models for parents of children with ASD ………………………….. …………… 88

CHAPTER 6: Study 1 : Comparing Three Models for Delivering Group -Based Support to
Parents of Children with ASD ………………………….. ………………………….. … 92
6.1 Study rationale ………………………….. ………………………….. ………………………….. .. 92
6.2 Meth ods ………………………….. ………………………….. ………………………….. …………. 95
6.2.1 Parti cipants ………………………….. ………………………….. ………………………….. ….. 95
6.2.1.1 Parent participant features ………………………….. ………………………….. ………. 95

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6.2.1.2 Parent participan t support features ………………………….. ……………………….. 95
6.2.1.3 ASD child features ………………………….. ………………………….. ………………… 97
6.2.2 Procedure ………………………….. ………………………….. ………………………….. …… 98
6.2.2.1 Recruitment of participants ………………………….. ………………………….. …….. 98
6.2.3 Setting, research de sign and assessment ………………………….. ………….. …..100
6.2.3.1 Setting ………………………….. ………………………….. ………………………….. ….. .100
6.2.3.2 Rese arch design ………………………….. ………………………….. …………………. .100
6.2.3.3 Description of the three support groups delivered in study 1 ……………… 104
6.2.3.4 Pre-and-Post support group self-report scales used to measure parent and
child changes ………………………….. ………………………….. ………………………. 108
6.2.3.4.1 The Patient Health Questionnaire – 9 (PHQ -9) ………………………….. …. 110
6.2.3.4.2 The Generalised Anxiety Disorder – 7 (GAD -7) ………………………….. … 112
6.2.3.4.3 The Parent -Child Relationship Inventory (P -CRI) ………………………….. 113
6.2.3.4.4 The ASD Behaviour Checklist (ASDBC) ………………………….. …………. 115
6.2.3.4.5 The Connor -Davidson Resilience Scale (CD -RISC) ………………………. 117
6.2.3.4.6 The Parent Profile Questionnaire (PPQ) ………………………….. …………… 118
6.3 Participants’ attrition and attendance patterns acros s the three support groups …
………………………….. ………………………….. ………………………….. ……………………. 119
6.4 Findings on the three support group effects ………………………….. ……………….. 121
6.4.1 Data analysis plan ………………………….. ………………………….. …………………. 121
6.4.2 Pre-and-Post I ntervention measures of par ent anxiety across the three
support groups ………………………….. ………………………….. ………………………. 123
6.4.2.1 Functional Behavioural Assessment Training Group ………………………… 123
6.4.2.2 Skills Training Group ………………………….. ………………………….. ………….. 124
6.4.2.3 Combined Group ………………………….. ………………………….. …………………. 124

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6.4.3 Post-Intervention and Follow -Up periods 1, 2 and 3 measures of par ent
anxiety across the three support groups ………………………….. ………………… 124
6.4.3.1 Functional Behavioural Assessment Training Group ………………………… 124
6.4.3.2 Skills Training Group ………………………….. ………………………….. ………….. 125
6.4.3.3 Combined Group ………………………….. ………………………….. …………………. 126
6.4.4 Pre-and-Post Intervention measures of parent depression across the three
support groups ………………………….. ………………………….. ………………………. 129
6.4.4.1 Functional Behavioural Assessment Training Group ………………………… 129
6.4.4.2 Skills Training Group ………………………….. ………………………….. ………….. 130
6.4.4.3 Combined Group ………………………….. ………………………….. …………………. 130
6.4.5 Post-Intervention and Follow -Up periods 1, 2 and 3 measures of par ent
depression across the three support groups ………………………….. ……………. 131
6.4.5.1 Functional Behavioural Assessment Training Group ………………………… 131
6.4.5.2 Skills Training Group ………………………….. ………………………….. ………….. 132
6.4.5.3 Combined Group ………………………….. ………………………….. …………………. 133
6.4.6 Pre-and-Post Intervention and Follow -Up periods 1, 2 and 3 comparisons of
parent -reported frequency of ASD behaviour in children across the three
suppo rt groups ………………………….. ………………………….. ………………………. 135
6.4.7 Pre-and-Post Intervention and Follow -Up periods 1, 2 and 3 comparisons of
parent ratings of the quality of the relationship with their children across the
three support groups ………………………….. ………………………….. ………………. 137
6.4.8 Parent ratings of support group satisfacti on/value in relation to session
number and topic across the three support groups ………………………….. ….. 138
6.4.8.1 Parent ratings of supp ort group satisfaction ………………………….. …………. 138

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6.4.8.2 Value ratings in relation to session number and topic attributed by
participants attending the Functional Behavi oural Assessment Training
Group ………………………….. ………………………….. ………………………….. ……. 140
6.4.8.3 Value ratings in relation to session number and topic attributed by
participants attending the Skills Training Group ………………………….. ….. 142
6.4.8.4 Value ratings in relation to session number and topic attributed by
participants attending the C ombined Group ………………………….. ………… 144
6.4.9 Summary of findings study 1 ………………………….. ………………………….. ….. 148
6.4.9 .1 Summary of parent -reported major difficulties and major concerns for their
ASD child ………………………….. ………………………….. ………………………….. . 148
6.4.9 .2 Summary of parent -reported anxiety findin gs across the three support
groups ………………………….. ………………………….. ………………………….. …. 150
6.4.9 .3 Summary of parent -reported depression findin gs across the three support
groups ………………………….. ………………………….. ………………………….. …. 150
6.4.9 .4 Summary of parent -reported frequency of ASD behaviour in children across
the three support groups ………………………….. ………………………….. …….. 151
6.4.9.5 Summary of parent -reported quality of relationship with their child across
the th ree support groups ………………………….. ………………………….. …….. 151
6.5 Study 1 discussion ………………………….. ………………………….. ……………………… 152
6.5.1 Participants’ attendance patterns across the three support groups …………. 153
6.5.2 Group content ………………………….. ………………………….. ……………………….. 156
6.5.3 Limitations of previous resea rch addressed in study 1 ………………………… 157
6.5.4 Lack of significant changes in anxiety and depression symptoms …………. 158

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6.5.5 Changes in parent -reported frequenc y of ASD behaviour in their child …. 160
6.5.6 Changes in parent -reported quality of relationship with their child ……….. 162

CHAPTER 7: Study 2 : Applying a Face -to-Face Semi Structured Interview to Explore the
Support Needs of Parents of Children with ASD ………………………….. ……. 164
7.1 Study rationale ………………………….. ………………………….. ………………………….. . 164
7.2 Methods ………………………….. ………………………….. ………………………….. ………… 167
7.2.1 Parti cipants ………………………….. ………………………….. ………………………….. …. 167
7.2.2 Procedure ………………………….. ………………………….. ………………………….. ……. 168
7.2.2.1 Recruitment of participants ………………………….. ………………………….. ……… 168
7.2.3 Setting ………………………….. ………………………….. ………………………….. ……….. 169
7.2.4 Data -collection methods ………………………….. ………………………….. ……………. 170
7.2.4.1 Description of the semi -structured interview ………………………….. …………. 170
7.2.4.2 Process for administering th e semi -structured interview ……………………… 179
7.2.4.3 Description of the self -report scales ………………………….. ……………………… 182
7.2.4.4 Process for completion of the self -report sca les ………………………….. …….. 183

CHAPTER 8: Thematic Analysis Findings on Parent Support Barriers and Needs ………. 184
8.1 Data analysis procedures for the semi -structured i nterview and the self -report
scales ………………………….. ………………………….. ………………………….. ……………. 184
8.1.1 Thematic Analysis procedure for the semi -structured interview ……………… 184
8.1.2 Stepwise process for conducting T hematic Analysis of interview data …….. 186

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8.1.2.1 Outlining the specific analysis process to be performed within the Thematic
Analysis framework ………………………….. ………………………….. …………….. 186
8.1.2.2 Familiaris ation with interview data ………………………….. ………………………. 188
8.1.2.3 Generalisation of initial codes ………………………….. ………………………….. …. 189
8.1.2.4 Location of themes within the interview data set ………………………….. …… 191
8.1.2.5 Re finement of initial themes ………………………….. ………………………….. …… 193
8.1.2.6 Defini tion and naming of themes ………………………….. …………………………. 195
8.1.3 The benefits associated with using Thematic Analysis ………………………….. . 197
8.1.4 Reasons why T hematic Analysis is suited to interview data …………………… 198
8.2. Findings of the T hematic Analysis on participants’ answers to the open
questions of the semi -structured interview ………………………….. ………………………. 201
8.2.1 Major themes identified through the T hematic Analysis ………………………… 202
8.2.2 Child -focused major themes identified ………………………….. ……………………. 208
8.2.2.1 Theme 1: Ag gressive behaviours ………………………….. ………………………… 208
8.2.2.2 Theme 2: ASD symptoms and difficulties ………………………….. …………….. 209
8.2.2.3 Theme 3: Health ………………………….. ………………………….. …………………… .211
8.2.2.4 Theme 4: Transitions ………………………….. ………………………….. ……………. .212
8.2.3 Environment -focused major themes identified ………………………….. ………… 213
8.2.3.1 Theme 1 : Concerns for child ………………………….. ………………………….. …… 213

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8.2.3.2 Theme 2: Most helpful support ………………………….. ………………………….. . 215
8.2.3.3 Theme 3: Least helpful support ………………………….. ………………………….. .. 217
8.2.3.4 Theme 4: Financial ………………………….. ………………………….. ………………. 218
8.2.3.5 Theme 5: School ………………………….. ………………………….. ………………….. 219
8.2.3.6 Them e 6: Work ………………………….. ………………………….. …………………….. 220
8.3 Findings from participants’ answers to the closed -questions from the semi –
structured interview ………………………….. ………………………….. ……………………. 222
8.3.1 Participants’ financial bracket of income ………………………….. …………………. 222
8.3.2 Participants’ anxiety check ………………………….. ………………………….. ……….. 223
8.3.3 Participants’ dep ression check ………………………….. ………………………….. …… 224
8.3.4 Participants’ social suppor t ………………………….. ………………………….. ……….. 225
8.3.4.1 Emoti onal support ………………………….. ………………………….. …………………. 225
8.3.4.2 Practical support ………………………….. ………………………….. ……………………. 226
8.3.4.3 Financial support ………………………….. ………………………….. …………………… 228
8.3.4.4 Informational support ………………………….. ………………………….. …………….. 231
8.3.5 Participants’ description of child beh aviour and functioning ………………….. 232
8.3.5.1 Findings on child’s aggressive behaviour ………………………….. ……………… 232
8.3.5.2. Findings on child’s repetitive behaviour ………………………….. ………………. 233
8.3.5.3 Findings on chil d’s sleep behaviour ………………………….. ……………………… 234
8.3.5.4 Findings on child’s school behaviour ………………………….. …………………… 235

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8.3.6 Activities participants reported as being most helpful from the programme
conducted for study 1 ………………………….. ………………………….. ………………. 235
8.5 Participants’ anxiety and depression scores compare d between study 1 and study 2
………………………….. ………………………….. ………………………….. ……………………. 236
8.5.1 Summary of parent -reported anxiety findings across parents who attended the
three support groups ………………………….. ………………………….. ………………… 237
8.5.2 Summary of parent -reported depression findings across parents who attended .
the three support groups ………………………….. ………………………….. …………… 238
8.6 Study 2 discu ssion ………………………….. ………………………….. ………………………. 240
8.6.1 Support seeking/accessing barriers ………………………….. …………………………. 241
8.6.2 Parents’ partic ipation difficulties in study 2 ………………………….. …………….. 243
8.6.3 Possible barriers to group access/attendance ………………………….. ……………. 244
8.6.3.1 Financial burden as a possible barrier to group access/attendance ………… 244
8.6.3.2 Child care as a possible barrier to group access/attendance …………………. 245
8.6.3.3 Work commitment as a possible barrier to group access/attendance ……… 247
8.6.3.4 Parents’ personal needs as a possible barrier to group access/attendance . 248
8.6.3.5 Family demographics as a possible barrier to group access/attendance …. 250
8.6.4 Parents’ concerns expressed in study 2 ………………………….. ……………………. 251

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CHAPTER 9: Recommendations for Effective Delivery of Support for Parents of Childr en
with ASD ………………………….. ………………………….. ………………………….. …. 255
9.1 Recommendations on how support might be delivered to parents of children
with ASD ………………………….. ………………………….. ………………………….. ……… 256
9.2 Limitations of studies 1 and 2 ………………………….. ………………………….. ………. 258
9.3 Clinical implications for studies 1 and I ………………………….. …………………….. 259
REFERENCE S ………………………….. ………………………….. ………………………….. ……………… 262
APPENDICES ………………………….. ………………………….. ………………………….. ………………. 340

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LIST OF TABLES
Table
1 Brief Reasons Given by Participants as to why they did not Access Government –
funded Respite Servi ce… ………………………………………………………….. 96
2 Participants’ Reasons for not Choos ing to Attend the ASDKG…………………… .99
3 Administration of Measures for Participants to Compl ete at Different Phases of the
Support Groups…………………………………………………………………… .104
4 Sex Ratio and Age Range of Participants w ho Attended the Three Groups………105
5 Topics Addressed in Each S essio n of the FBATG…………………………………106
6 Topics Addressed in Each Session of the STG…………………………………… .107
7 Topics Addressed in Each Sessi on of the CG………………………………………108
8 Lists of Scales used in Surveys in Relation to Measurement Point and Week
Administ ered……………………………………………………………………….109
9 Means and Standard Deviations for the Value Attributed by Participants from the CG
and by Participants from the FBATG for the Same Three Sessions They
Received… …………………………………………………………………………145
10 Means and Standard Deviations for the Value Attributed by Participants from the CG
and by Participants from the STG for the Same Three Sessions They Received … 146

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Table
11 Major Difficulties Parents of Children with ASD Experienced at the time of Pre –
Interven tion………………………………………………………………………..14 8
12 Major Concerns Parents of Children with ASD Described at the time of Pre –
Intervention for Their Child’s Future……………………………………………..149
13 Potential Themes Resulting from the Opened Questions Asked During the Semi –
Structured In terviews………………………………………………………………171
14 Description of the Process Used Within Six Different Phases of TA Developed by
Braun and Clar ke (2006)…………………………………………………………..196
15 Major Themes Named and Defined, and Examples Retrieved from Data Coding for
Each Theme Defined……………………………………………………………… .203
16 Activities from Study 1 that Participant s Found to be Most Useful……………….236

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LIST OF FIGURES
Figure
1 Mean estimates (comprising self -reported anxiety using the total score of the GAD7)
calculated separately for the FBATG, the STG and the CG presented across five time
periods……………………………………………………………………………… ..129
2 Mean estimates (comprising self -reported depression using the total score of the
PHQ9) calculated separately for the FBATG, the STG and the CG presented across five
time periods …… …………………………………………………………………… 135
3 Mean estimates of child’s ASD -related behaviour reported by participants from the
FBATG, the STG and the CG acr oss five time per iods…………………………….136
4 Mean estimates of PCR upon the parents’ evaluations of the quality of their
relationship with their child from the FBATG, the STG and the CG across five time
perio ds……………………………………………………………………………… 138
5 Mean scores attributed by participants ( n = 11) to indicate how valuable they found
each session of the FBATG to be, using a seven -point Likert scale……………… .141
6 Mean scores attributed by participants ( n = 12) to indicate how valuable they found
each session of the STG to be, using a seven -point Likert scale………………… …143

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Figure
7 Mean scores attributed by participants ( n = 13) to indicate how valuable they found
each session of the CG to be, using a s even -point Likert scale…………………. …147
8 Participants’ ( N = 33) self -report anxiety rating during the semi -structured interview
process…………………………………………………………………………… ..224
9 Participants’ (N = 33) self -report depression rating during the semi -structured
interview process……………………………………………………………… …..225
10 Participants’ ( N = 33) rating of the emotional support they received from family
members and friends on a 10 -point Likert sca le, from 1 (not at all) to 10 (all the
time) ……… ………………………………………………………………………..226
11 Participants’ ( N = 33) rating of the practical support they received from family
members and friends on a 10 -point Likert scale, from 1 (not at all) to 10 (all the
time) ……… ………………………………………………………………………..228
12 Participants’ ( n = 29) rating of their child’s use of physical aggression and emotional
aggression towards other people on a 10 -point Likert scale, from 1 (not at all) to 10
(all the t ime)……………………………………………………………………….. 233
13 Mean estimates of parents’ anxiety self -report from the FBATG, STG and CG across
six time periods…………………………………………………………………… .238

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Figure
14 Mean estimates of parents’ depression self -report from the FBATG, STG and CG
across six time periods………………………………………………………………239

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1. Introduction
The term Autism Spectrum Disorder (ASD) refers to a group of neurodevelopmental
conditions characterised by atypical development in the domains of social communication,
social interaction, adaptive behaviour plus presence of restricted and repetitive response
patterns (Tobing & Glenwick, 2002 ). The term “spectrum” is used to denote the wide range
of symptoms, sk ills and levels of functioning that individuals diagnosed with ASD can
experience ( APA, 2013 ). In addition to this variation in presentation of core autism features,
children with ASD are highly likely to exhibit patterns of difficult behaviour which creat e
major challenges for their parents. Researchers consistently report that parents of children
with ASD are more likely than parents of children with other developmental or physical
disabilities to experience poor mental health well -being and ill physical health. Multiple
studies have shown that parents of children with ASD are more likely than other parents to
report greater levels of anxiety (Weiss, 2002), and depression (Greenberg , Seltzer, Krauss,
Chou, & Hong, 2004). Factors which contribute to the elevated stress levels of parents of
ASD children relate to the unpredictability of their child’s behaviour (Allik, Larsson, &
Smedje, 2006; Benson, 2006; Blacher & McIntyre, 2006 ), their child’s cogniti ve/learning
difficulties (Bebko, Konstantareas, & Sp ringer, 1987; Moes, 1995), the under -development of
their child’s communication skills (Bebko et al., 1987; Moes, 1995), the lack of
understanding from the wider community of the nature of ASD (Farrugia, 2009; Gray, 2002),
and the onset of marital difficul ties (Hartley et al., 2010; Pottie , Cohen , & Ingram, 2009).
It is clear that parents of children with ASD require targeted assistance in dealing with
their children’s needs and their own difficulties. Formal support groups have received
considerable resea rch attention as a possible basis for delivering assistance to parents of
children with ASD. Formal support groups for parents of children with ASD are clustered

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around three foci: building parents’ capacity to understand their child’s autism -specific
difficulties and the ramifications of these on daily functioning ( Ferraioli & Harris, 2013 );
training parents to manage the atypical responses an d challenging behaviour of their child
(Bitsika & Sharpley, 2000 ); and more recently, assisting parents to learn basic psycho -social
strategies to manage their mental health and adverse life circumstances ( LaPlante , 2013 ).
Interestingly, evaluations of research -based support groups such as these reveal two issues,
which require further investigation in order to maximise clear recommendations on best –
practice delivery of group support. First, there is large between -group v ariation which varies
greatly in relation to content, delivery methods, and data -collection to measure effects on
parent well -being changes and this has prevented effective cross -group comparisons (Dennis,
2003 ). Second, despite parents reporting positive outcomes as a result of participating in
group support, researchers have consistently reported high levels of attrition and inconsistent
attendance following enrolment in group support (Shadish & Haddock, 2009 ).
The thesis sought to address the question of how to best deliver group support to
parents of children with ASD, using a two stage process. First, three different models for
group support were delivered and evaluated in relation to their relative impacts on parent
mental health (i.e., study 1). Secon d, and arising from the findings of the first study, a semi –
structured interview was employed to conduct an in -depth examination of the particular
circumstances of this parent group, as well as the life factors which might act as barriers to
consistently a ccessing support.
Chapter 2 of this thesis discussed the defining features of ASD with a focus on the
evolution of the diagnostic criteria for this condition . The b iomarkers which might illuminate
several possible causes of autism are briefly touched upon. The diagnostic criteria for ASD,
from the perspectives presented in the Diagnostic and Statistical Manual of Mental Disorders

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(i.e., DSM -IV-TR [APA, 1992] and DSM -5 [APA, 2013]) are discussed from a comparative
focus which emphasises the changing conceptualisations of ASD and how those changes
have affected detection. In addition to discussing the core features required for a diagnosis of
ASD, this chapter also outl ines the associated behavioural difficulties which adversely impact
the daily functioning of children with ASD In acknowledgement that ASD often occurs with
other psychiatric and behavioural conditions, the discussion will extend to the major co –
morbid dis orders which further impact on daily functioning.
Chapter 3 of this thesis outlines the psychosocial experiences believed to arise from
parents who raise a child with ASD , with a particular focus on self -reported stress, anxiety
and depression. The unique challenges confronted by these parents are highlighted via
comparison of the mental health data from studies on parents of children with other
developmental disorders, children with physical impairments, and neurotypical children. The
discussion will also encompass the wider impacts of having a child with ASD on family,
martial, and financial functioning.
Chapter 4 of this thesis seeks to contextualise and further explore the experiences of
parents of children with ASD by presenting findings on the psychos ocial factors which have
been shown to enhance the capacity of parents to cope with the particular demands they
confront. The chapter will begin with a description of the behavioural responses of parents to
different levels of stress , and then introduce th e specific factors which are believed to
ameliorate effective stress coping. In -depth discussion will be presented in relation to coping
style, social support, and personal resilience and the association between these pro -coping
factors and positive parent al functioning.
Chapter 5 presents an analysis of the studies which have implemented formal group
support with parents of children with ASD in relation to the features of those groups. The

4

focus will be on the specific features of implementation period (i.e., the length of time groups
were conducted), content (i.e., the overall theme plus specific topics covered), delivery
methods (i.e., the procedures employed to facilitate delivery of content). The discussion will
also extend to examination of the pre sence and type of data -collection implemented to
monitor the effects of support group participation on specific aspects of parent functioning.
This chapter will finish with an outline of the gaps in the research on group support
implementation and briefly describe how those gaps might be addressed during development
and delivery of such support in a community context.
Chapter 6 will discuss the first phase (i.e., study 1 ) of the research which aimed to
compare the relative effects on parent mental health of three support groups which differed in
content but were identical in implementation period, delivery methods, and data -collection
processes used to monitor any changes in parent mental health (i.e., anxiety, and depression),
parent -child relati onship, and parent reports of their child’s challenging behaviours . Specific
descriptions will be provided in rel ation to the rationale for the s tudy 1, self -report scales
used to measure “parent change” plus the specific points at which those measures were
applied, and support group implementation procedures. This chapter will also present
discussion of the relative impacts of the three support groups on participant functioning. The
relative satisfaction of parents with specific sessions (across the three groups) as well as their
inconsistent attendance will be explained.
Chapter 7 will discuss the second phase (i.e., study 2) of the research which aimed to
investigate the specific aspects of parents’ lives that might act as barriers to accessing support
groups. The delivery methods and data -collection processes used to administer the semi –
structured interview and to monitor any changes in parent mental health (i.e., anxiety, and
depression), parent -child relationship, and parent reports of their child’s challenging

5

behaviours . The micro -counselling skills used during the implementation of the semi –
structured interview will be described. Specific descriptions will be provided in relation to
the rationale for the study 2, self-report scales to measure “parent change” and the
implementation of the semi -structured interview.
Chapter 8 of this thesis explains the process used in Study 2 to conduct a Thematic
Analysis of the self -report data obtained from the face -to-face se mi-structured interview
administered to parents to identify the life circumstances and factors which might have
contributed to the inconsist ent attendance observed during s tudy 1. The data -collection
process for ph ase two of the research (i.e., s tudy 2) involved administration of a semi –
structured interview (containing 13 open and 40 close d questions) and the same self -report
survey package implemented in s tudy 1. Therefor e, the major findings of study 2 will be
described in relation to major child – and environment -focused themes obtained from analysis
of responses to open questions, basic trends obtained from review of responses to closed
questions, and frequency/percentage figures obtained from response s to the survey package.
Specific comment is made on the psycho -social barriers to parents accessing and consistently
attending support. Finally, brief comparison (from studies 1 to 2) of parents’ self -reported
anxiety and depression levels and perception on their children’s’ difficulties will be presented.
Chapter 9 of this thesis draws together findings from the wider research and the
results from studies 1 and 2 to create a number of practical recommendations to guide
delivery of needs -based group suppor t for parents of children with ASD. Those
recommendations are designed for mental health practitioners interested in implementing
group support in community contexts and, as such, are practical in focus. This chapter
finishes with a discussion of the resea rch limitations identified for study 1 and study 2 with

6

suggestions for overcoming those limitations plus the implications for the professional field
of the findings of this research.

7

2. Descript ion of Autism Spectrum Disorder (ASD)
The term Autism Spectrum Disorder (ASD) refers to a group of neurodevelopmental
impairments conditions characterised by uncommon atypical development in the domains of
social communication, social interaction, adaptive behaviour plus presence of restricted and
repetitive response patterns behaviour, communication, and socialisation ( Tobing &
Glenwick, 2002 ; Shu, 2009). The term “spectrum” includes is used to denote the wide range
of symptoms, skills and levels of impairments in functioning that individuals diag nosed with
ASD can experience (DSM -5; APA, 2013).
The Australian Bureau of Statistics revealed that in 2009 that 64,400 Australians
between the ages of 0 to 29 years suffered from ASD. This was an increase of 34,200 from
the 2003 Survey of Disability, Age ing and Carers (SDAC). It was also reported that of the
64,400 individuals diagnosed with ASD, only 18 per cent were females which corresponded
to the statistics of other countries (The Australian Bureau of Statistics, 2014). The survey on
the prevalence o f ASD released in 2014 by SDAC showed an estimated 115,400 Australians
(0.5%) had autism in 2012. These figures indicated a 79% increase on the 64,400 -people
estimated to have the condition in 2009. In SDAC 2012, ASD was reported to be more
commonly found in males than females. Males were four times more likely than females to
have the condition, with prevalence rates of 0.8% and 0.2% respectively. Such results
remained consistent with overseas estimates. For instance, the Center for Disease Control and
Prevention in the United States revealed that young males were 4.5 times more likely than
young females to be diagnosed with ASD. According to SDAC, there were considerable
variations in the prevalence of ASD across age groups, with a marked drop off in preva lence
after a constant increase in diagnosis in the five to nine years age group. Survey scope and

8

diagnostic issues have been identified as possible reasons for the variations in prevalence of
ASD across age groups (The Australian Bureau of Statistics, 20 14).
Both Kanner (1943) and Asperger (1944) published clinical studies which contained
the first detailed reports of autistic symptoms and behaviour patterns. In addition to
redefining autism as a neurodevelopmental disorder, as opposed to a childhood form of
schizophrenia (Bleuler, 1911) , Kanner’s and subsequently Asperger’s clinical insights formed
the basis for scientific studies in the conceptualisation, definition and detection of autism –
based disorders. Kanner (1943) published an article entitled "Autistic Disturbances of
Affective Contact" , in which he described the cases of eleven children with autism who
exhibited similar impairments and responses to social stimuli , presenting specific features
across all children including, preoccupation with o bjects, repetitive behaviours , insistence on
consistency, and deficiencies of language, among other behaviours. Kanner (1943) explained
that children with autism seemed unable to relate to others , with specific social deficits
involving children’s failure to recognise and react to a caregiver when being picked up, or by
children’s inability to use language for the purpose of social communication . Kanner (1943)
also observed that the initial group of 11 children reacted to loud noises and moving objects
with horror, and with repetitious utterances. He interpreted the se reactions to indicate that
these child ren had an obsessive desire to maintain sameness in their environment.
The spectrum of clinical con ditions labeled “autism ” soon expanded beyond Kannerʼs
first description. In 1944, Hans Asperger described a group of 4 children he also called
‘autistic’, but who seemed to have high non -verbal intelligence quotients and who used a
large vocabulary correc tly during conversations . In addition to the marked difficulties in
social interaction , Asperger also noted other features present in these cases. Asperger (1944)
described autistic children as possessing impaired nonverbal social skills, idiosyncratic

9

communication, egocentric obsessions and s pecial interests, intellectualis ation of affect,
gaucheness and poor body awareness, and behavioural problems. Unlike Kanner, Asperger
(1979) argued that speech and language skills early in life were apparently nor mal, and that
the condition was not able to be recognis ed before 36 months of age . Furthermore, Asperger
(1944, 1979) specified that the core diagnostic features of this syndrome were: social
impairment ( i.e., poor empathy, failure to develop friendship), motor clumsiness, all
absorbing interest s, and language /communication impairments ( i.e., impoverished
imaginative play, idiosyncratic language). Kanner (1943) presented three diagnostic criteria
pertaining to deficits in reciprocal social interactions; atypical development and use of
language; repetitive and ritualised behaviours ; and a narrow range of interests as the core
features in individuals with ASD. The high similarity between this set of diagnostic criteria
have led to the suggestion that both Kanner and Asperger were describing the same condition
but had focused their investigations on tw o different sub -types of autism.
2.1. ASD as a n eurodevelopmental disorder .
2.1.1. Possible biological underpinnings for ASD.
Biomarkers have been studied for the past fifty years as one basis for illuminating the
possible causes of ASD , with minimal progress being made on identification of specific and
reliable biological markers that might aid accurate diagnosis and subgroup categorisation
(Anagnostou & Taylor, 2011) . The focus of research into biomarkers has been on explaining
the mechanisms that create the abnormalities associated with ASD in the hope of assisting in
early identification, predicting r isk and course, defining subgroups, and predict ing treatment
response. Genetic, biochemical, neuropsychological, neurophysiological and neuroimaging
measures have been investigated and, at times, proposed various (often replicated)

10

biomarkers for autism (C icchetti & Toth, 2009; Gottlieb, 2007; Yordanova, Kolev, Kirov, &
Rothenberg, 2010).
Despite inconsistencies in the findings from S tructural Magnetic Resonance Imagery
(MRI) studies , there is some indication that volume anomalies in both grey and white brain
matter exists in ASD , with identification of several region -specific differences. Early brain
overgrowth appears to be the most replicated finding in a subgroup of people with ASD, and
new techniques, such as cortical -thickness measurements and surfa ce morphometry have
begun to elucidate in more detail the patterns of abnormalities as they evolve with age, and
are implicating specific neurodevelopmental processes (Amaral, Schumann, & Nordahl, 2008;
Giedd et al., 1999 ; Herbert et al., 2003; Stanfield e t al., 2007).
There has been much heterogeneity in the manifestation of core ASD features , varied
occurrence of significant co -morbid conditions and generally small sample sizes for both
MRI and post -mortem studies of ASD and these participant -oriented lim itations are believed
to have contributed to poor replication of findings across research groups (Anagnostou &
Taylor, 2011). Researchers such as Happé’s (1999) and Happé and Frith (2006) have argued
that a more clear -cut pathology is likely to emerge once distinct phenotypes of the disorder
are factored into the analysis of results . Furthermore, the variation in the ASD manifestation
of core features was clearly identified, indicating that the heterogeneity within ASD is an
inevitable consequence of the numerous differences along at least three fundamentally
independent and interrelated dimensions of this disorder , known as social and communication
difficulties, and repetitive and rest ricted behaviour and interests . Past research has
acknowledged that seemingly simpler dimensions of ASD can themselves be quite complex
genetically and biologically (Fisher, 2006; Naples, Katz & Grigorenko, 2012; Skuse &
Gallagher, 2011).

11

Recently, a numbe r of studies have analysed connectivity differences between
subjects with autism spectrum disorders and typically developing control subjects in the
absence of an overt task, while subjects were at rest (Müller et al., 2011). In resting -state
functional co nnectivity studies (Fox & Raichle, 2007), correlations across brain regions
reflect the covariation of spontaneous or internally generated brain activity. Spatially specific
patterns of correlation in such studies are strongly, although not exclusively, in fluenced by
anatomical connectivity (Honey et al., 2009) and exist independently of explicit thought in so
far as they can be observed in anaesthetized monkeys and humans during sleep (Larson -Prior
et al., 2009; Margulies et al., 2009). Several studies hav e demonstrated reduced correlation in
autism spectrum disorders among regions of the so -called ‘default’ network (Kennedy &
Courchesne, 2008; Monk et al., 2009 ), which overlap largely, but not completely, with social
brain regions (Simmons & Martin, 2011). However, like task -based functional connectivity
studies, resting -state studies of autism spectrum disorders have only evaluated a handful of
seed locations in any individual study (Gotts et al., 2012).
2.1.2. Evolution of diagnostic cr iteria for ASD in the Statistical Manual of Mental
Disorders (DSM) .
This discussion on how conceptualisations and definitions of autism have been shaped
over time will refer primarily to the diagnostic criteria and evaluation guidelines set out in the
various editions of t he Diagnostic Statistical Manual (DSM) . This decision has been taken to
reflect the diagnostic practices of Australia which are almost exclusively guided by the DSM.
Autism was first introduced as a distinct disorder of early childhood in the third
edition of the DSM (APA, 1980), and was referred to as “Infantile Autism” (IA). The DMS –
III (APA, 1980) presented six diagnostic criteria for IA and required that the child show early
and pervasive evidence on all of the following diagnostic criteria: 1) p ervasive lack of

12

responsiveness to other people; 2) gross deficits in language development; 3) peculiar speech
patterns, if speech is present at all; 4) bizarre responses to the environment; and 5) an absence
of delusions, hallucinations, loosening of asso ciations, and incoherence as in schizophrenia ;
and 6) early onset (prior to thirty months) of criterion 1 -5 impairments . These early DSM
criteria, whilst representing formal recognition of the existence of autism, were also criticised
because they primaril y accounted for children exhibiting symptomatology close to birth,
causing poor identification of the subgroup of children who experienced a loss of skills after
some years of normal development ( Volkmar, Cohen, & Paul, 1986 ; Wing, 1981 ). This
diagnostic limitation was addressed in the DSM -III-R (APA, 1987) which maintained the IA
diagnosis for children with early -onset neurological impairment and introduced the additional
label of Regressive Autism (RA) to account for those cases in which deterioration of
functional skill was evident . This inclusion of two diagnoses was significant as it provided
the first acknowledgement that autism was not a single condition (APA, 1987) . However, the
DSM -III-R (APA, 1987) was also criticised because the diagnostic criteria for IA and RA
were considered to be too narrow to account for the full range of symptoms/behaviours
shown by children with autism , especially those who were high functioning.
The DSM -IV/DSM -IV-TR (APA, 1994/2000) sought to rectify thi s limitation by
introducing a broad classification ( i.e., Pervasive Developmental Disorder) which
encompassed five specific diagnoses (i.e., Autistic Disorder, Pervasive Developmental
Disorder -Not Otherwise Specified, Asperger’s Disorder, Rett’s Disorder, and Childhood
Disintegrative Disorder) . The DSM -IV/DSM -IV-TR formally introduced the diagnosis of
Asperger’s Syndrome as the diagnosis that would account for individuals with age –
appropriate language and intelligence but atypical socialisation and adaptive skills .
The DSM -IV-TR (APA, 2000) used the “triad of impairment model” as the basis for
establishing the diagnostic cr iteria for autism disorder. That model , which was developed by

13

Wing and Gould (1979), argued that autism could be identified by evidenc e of delayed
development in reciprocal social interaction [ i.e., poor eye contact and inabili ty to engage in
joint attention ] (Hobson & Lee, 1999; Wimpory, Hobson, Williams, & Nash, 2000)
(Criterion A) ; language and functional communication [ i.e., poor person -to-person non -verbal
communication of literal speech, and langu age comprehension difficulties ] (Wimpory, et al.,
2000) (Criterion B) ; as well as the presence of restricted and repetitive behaviours, interests
and activities [ i.e., hand flapping, com plex and simple tics, and repetitive use of obj ects]
(Canitano & Scandurra, 2011 ) (Criterion C) . For an individual to receive a diagnosis of
Autistic Disorder, a total of at least two items from the section on impairment in social
interaction had to be sel ected. One item or more for the section on impairment in
communication had to be identified. A minimum of one item from the section on restricted,
repetitive and stereotyped patterns of behaviour, interests and activities needed to be
identified. Furthermo re, symptoms will have to be present during the early developmental
period, at approximately three years old or younger. These areas comprised social
interactions, language used in social communication, and symbolic or imaginative play.
The DSM -IV-TR (APA , 2000) has been credited with advancing the diagnostic field
by aiding differentiation of subgroups via provision of specific diagnostic labels ( Wimpory et
al., 2000 ), including Asperger’s Disorder to account for cases of high -functioning autism
(Wimpory et al., 2000), and expanding the diagnostic criteria within the autism label to
capture the intra -label heterogeneity discussed in the research ( Canitano & Scandurra, 2011 ).
Further, the DSM -IV-TR (APA, 2000) contributed to creation of the “autism spectrum ” via
provision of three related diagnoses (i.e., Autistic Disorder, Asperger’s Syndrome and PDD –
NOS). However, clinical researchers argued that the DSM -IV-TR (APA, 2000) required
substantial revision because it did not effectively capture the wide range o f variation in
symptoms which represented the autism spectrum, nor did it include the full constellation of

14

difficulties (e.g., hypersensitivity to sensory stimuli in the environment, restricted diet, and
poor sleeping patterns) which disrupt daily functio ning and require clinical attention (Schuler
& Fletcher, 2002; Tid marsh & Volkmar, 2003).
2.2. Current conceptualisation of autism -related conditions .
The latest DSM -5 (APA, 2013) contains a number of changes to the criteria for
detecting autism as well as the procedures for determining the severity of autism impairments.
General alterations in classification focus have involved replacement of the PDD category
with ASD; and the removal of specific diagnostic labels p resented in the DSM -IV-TR (APA,
2000). These changes were driven by research which suggested that the previous diagnoses
did not represent clearly differentiated autism subtypes and nor did they account for the
variation presentation of symptoms (Waterhou se, 2013). In addition to offering one broad
diagnostic category (i.e., ASD) to account for range of autism -based subgroups, the DSM -5
(APA, 2013) has incorporated research -driven refinement to the specific diagnostic criteria
by: recognising that autism i mpairments (whilst being present prior to 36 months of age)
might not become evident until social demands exceed the child’s social competencies;
collapsing the DSM -IV-TR Criteria A and B into one criterion which refers to impairments in
social communicati on and social interaction; formally acknowledging the presence of hyper –
and/or hypo -responsiveness to sensory stimuli as a key deficit in ASD; and further
elaborating on interference in daily functioning via allocation of an autism severity level
which ran ges from 1 “requiring support”, 2 “requiring substantial support”, to 3 “requiring
very substantial support”.
The accuracy with which the DSM -5 was capable of identifying cases of ASD was
examined via a number of validation studies that employed the proposed ASD criteria
released in 2011 . Frazier and colleagues (2012) analysed symptoms from 14,744 siblings

15

(8,911 ASD; 5,863 non -ASD) , ranging in ages from two to 18 years. Caregivers reported on
frequency of symptoms using the Social Responsiveness Scal e and the Social
Communication Questionnaire. Diagnostic efficiency statistics evaluated the proposed DSM –
5 algorithm in identifying ASD. Empirical classifications from this hybrid model closely
mirrored clinical ASD diagnoses ( with a 90% overlap), implyin g that the DSM -5 criteria
encompassed a broad ASD category distinct from non -ASD. Moreover, the DSM -5 criteria
had greater diagnostic specificity relative to DSM -IV-TR criteria (Frazier et al., 2012).
Another study conducted by Huerta, Bishop, Duncan, Hus , and Lord (2012) evaluated the
proposed DSM -5 criteria for the single diagnostic category of ASD in over 4,000 children
with a pre -existing DSM -IV-TR diagnoses of Pervasive D evelopmental Disorders (PDDs)
and non -PDD diagnoses. Based on the data obtained fr om parents, the proposed DSM -5
criteria identified 91% of children with DSM -IV PDD diagnoses, suggesting that most
children with DSM -IV PDD diagnoses would remain eligible for ASD diagnosis under the
proposed DSM -5 criteria (Huerta et al., 2012). Studies su ch as these suggest that the DSM -5
diagnostic criteria provide a robust basis for accurately identifying the presence of ASD, but
this finding is not uniformly confirmed in the research.
Contradictory results have been reported by Kulage, Smaldone and Cohn (2014) , who
conducted a systematic review and meta -analysis to determine the effect of changes to the
DSM -5 (APA, 2013) on ASD detection . The findings revealed that 14 previous studies
consistently reported decreases in previously -made ASD diagnosis using DSM -5 criteria.
There were statistically significant pooled decreases in ASD and DSM -IV-TR subgroups of
Autistic D isorder and PDD -NOS . However, the pooled decrease for previously -diagnosed
Asperger’s Syndrome was not significant. The rese archers predicted that the DSM -5 would
likely decrease the number of individuals diagnosed with ASD, particularly individuals

16

within the PDD -NOS subgroup. Similar findings were noted in a study by McPartland,
Reichow and Volkmar (2012) who analysed the res ults from 933 particip ants evaluated
during the DSM -5 field trial (APA, 2013) . The ir findings indicated that , whilst showing
sound sensitivity, the DSM -5 (APA, 2013) risked exclusion of a portion of individuals with
good cognitive abilities.
The DMS -5 (AP A, 2013) revisions are believed by some researchers ( Baron -Cohen,
Golan, Wheelwright, & Hill, 2004 ; Huerta et al., 2012 ) to provide a sound basis for more
specific, reliable, and valid diagnoses of ASD. These revisions have been made in the hope of
providi ng more specific, reliable and valid diagnoses of ASD. For instance, clinical
researchers such as Baron -Cohen and colleagues (2004) have argued that these revisions are
necessary to accurately reflect the wide range of impairments and behaviour profiles se en in
individual children on the autism spectrum. However, there are also some genuine concerns
regarding the potential for those revisions to adversely impact individuals previously
diagnosed with Asperger’s disorder and PDD -NOS. One of the most recurrent concerns is
that some higher functioning individuals, will no longer meet the requirements of the stricter
diagnos tic criteria, and consequently experience greater barriers in accessing services that
would benefit them greatly (Compart, 2012). O ther resea rchers (Mattila et al., 2011; Wing,
Gould, & Gillberg, 2011) have proposed that the changes to the DSM -5 will decrease the
accuracy with which high -functioning children are identified. This research team applied the
draft of the DSM -V diagnostic criteria f or ASD to 26 children with an autism condition
(confirmed by their ADI -R and ADOS scores) and reported that the DSM -5 criteria were not
of sufficient sensitivity to more able children with well -developed communication and few of
stereotyped and repetitive behaviours.

17

In addition, there is ambiguity regarding how state and educational services, and
insurance companies will adopt t he changes proposed by the DSM -5. It seems evident that
these changes will have an impact on families and people currently diagno sed with ASD. It
remains to be seen how diagnosticians and clinicians will utilise the new criteria in evaluating
children and the impact it will have on the ava ilability of services provided. The DSM -5
criteria (like DSM -IV-TR) do not mention the lack of imagination leading to the inability to
foresee the consequences of one's actions for oneself or for others. This is perhaps the
problem that leads to the most severe social difficulties for the person with auti sm spectrum
conditions and those involved wit h him/her. This shoul d certainly be included in DSM -5. The
third criterion in the DSM -5 draft is “Symptoms present in early childhood ” (but may not
become fully manifest until social demands exceed limited capacities ). The problems of
social interaction ar e present from birth in individuals with any autism spectrum disorder
(unless a condition such as encephalitis or a brain injury at some time after birth leads to
autistic behaviour). However, it needs an experienced observer (or a very observant parent) t o
recognise the earliest signs in infants . The problem in clinical work is that individuals
presenting for the first time in later childhood, adolescence or adult life may not have anyone
who knew them in early childhood to give an accurate history, or, in other cases, the
informant is unable, for various reasons, to give a clear and accurate picture of the early years.
If the DSM -5 is accepted in its present form, individuals in this situation may be denied
appropriate help (Wing et al. , 2011) . It seems ev ident that these changes will have an impact
on families and people currently diagnosed with ASD. It remains to be seen how
diagnosticians and clinicians will utilise the new criteria in evaluating children and the impact
it will have on the availability o f services provided.

18

2.3. Factors leading to variation in ASD symptom presentation and daily
functioning .
In addition to the primary impairments discussed on pages 13 -16 of this thesis (which
are currently required for a diagnosis of ASD), children with ASD have been reported to
experience a range of additional difficulties (i.e., attention, behaviour, eating and sleeping
patterns) which adversely impact their functioning. Those difficulties are of ten the cause of
clinical referral, and if they are not understood and effectively treated, can cause exacerbation
of autism -based impairments. Therefore, timely identification and remediation of such
secondary difficulties is significant to improving the overall functioning of children with
ASD. The discussion which follows, describes the secondary difficulties that are most
commonly associated with ASD in an effort to provide a more holistic understanding of the
overall profile of individuals on the autism spectrum. Reference will also be made to the
relative strengths and talents which exist for those individuals. This discussion acknowledges
the inter -individual differences in secondary difficulties and strengths/talents, and intends
only to provide a broad profile.
Although secondary impairments can vary from one child to the next, it is usual for
children on the autism spectrum to show evidence of poor attention, especially during social
situations involving peers (Aman et al., 2009; Baranek, 1999) . Poor attention has been
identified as one precursor for the poor and/or atypical social responses and incapacity to
identify salient social stimuli which is often seen in children with ASD. Aman and colleagues
(2009 ) suggested that approximately 50% of children with ASD were affected by a short
attention span, and this was believed to prevent them from extracting meaning from and
responding to their social environment. Interestingly, Baranek (1999) reported a link between
poor attention in one year old ch ildren and a risk of exhibiting autism -based impairments in

19

early childhood. In this study, approximately 65% of the parents of children with ASD
reported that their child was prone to losing contact with their social environment, tuning out,
and appearing to be in “a world of his/her own ” at age of one (Baranek, 1999).
Several researchers (Bromley, Hare, Davison, & Emerson, 2004 ; Koydemir -Özden &
Tosun, 2010; Sou ders, Freeman, DePaul, & Levy , 2002) have argued that the core
communication and social interaction impairments required for ASD diagnosis predisposed
children to engage in challenging behaviours, such as severe tantrums, aggression, and self –
injury. Self -injurious behaviours were estimated to occur in up to 50% of children w ith ASD,
with 15% of children exhibiting severe self -injury (Baghdad li, Pascal, Grisi, & Aussilloux ,
2003). Matson et al. (201 1) reported a relationship between the severity of self -injurious and
stereotypic behav iours in children with ASD; and their degree of social and communication
impairment, with children who showed a higher degree of social and communication
impairment being at greater risk of engaging in self -injurious behaviours. Additionally,
Browne (2006) revealed that children who lacked communication skills were often frustrated
or even frightened by events in their immediate environment and these maladaptive
behaviours acted as a mean for communicating such feelings. Findings such as these
emphasise the inter-relationships between core ASD impairments and onset of secondary
difficulties by suggesting that the former appear to be precursors for the latter.
Another area of interest in research investigated the symptoms and the affects these
symptoms have on daily functioning in relation to severity level. Restricted, repetitive, and
stereotyped patterns of behaviour were identified in previous research as key features of ASD
and were believed to reflect a failure of inhibition and cognitive rigidity (Turne r, 1997). In a
study conducted by Militerni, Bravaccio, Flaco, Fico, and Palermo (2002) restricted and
repetitive behaviours observed in ASD were described as being heterogeneous and seemed to

20

vary according to the developmental level and cognitive ability of the individual with ASD.
For instance, higher functioning autistic individuals could display more insistence on
sameness compared to individuals diagnosed with Asperger’s disorder who on the other hand
demonstrated a higher level of restricted interest s (Ozonoff, South, & Miller, 2000). However,
Militerni and colleagues (2002) noted that younger and lower functioning autistic individuals
exhibited more often motor stereotypies such as hand flapping and rocking. These different
behaviours were believed t o reflect executive dysfunction in individuals with ASD.
Disturbances to sleep and eating patterns have been shown to occur regularly in
individuals with ASD (Bauman, 2010; Matson & Cervantes, 2014). For instance, a study
conducted by Souders and colleague s (2009) revealed that 66% of children with ASD
experienced moderate sleep disturbances, with the predominant sleep disturbance being
referred to as “behavioural insomnia sleep -onset” (Souders et al. , 2009). Two other studies
conducted with children with ASD reported that difficulties relating to falling asleep and
sleep walking were the most common sleep difficulties identified by parents (Rich dale &
Schreck, 2009; Ma low &McGrew, 2008). The aetiology of sleep difficulties in children with
ASD is viewed as being multifactorial, comprising possible circadian rhythms disturbances
and issues with melatonin regulation and sleep hygiene (Richdale & Schreck , 2009 ; Johnson
& Ma low, 2008). Even though the vast majority of research to address sleep problems in
child ren with ASD has focused on the factors mentioned so far, another line of research has
explored the impact that hyperarousal might have on sleep problems . White and colleagues
(2009) have suggested that children with ASD are at increased risk of experienci ng both
anxiety and sensory over -responsivity (Watling, Deitz & White, 2001). The relationship
between anxiety and sleep problems in children with ASD has been extensively investigated,
with researchers such as Wiggs and Stores (2004) reporting that anxiet y-related night time

21

behaviours and sleep disturba nces were commonly observed in the sample of children with
ASD they had examined . Moreover, anxiety was linked to insomnia in a study conducted
with adults who rece ived a diagnosis of Asperger’s D isorder (T ani et al., 2004).
Disturbances to eating behaviour and pattern in children with ASD have generally
been studied within the context of “ food selectivity ” which is a broad term that encompasses
preferences for certain food at the expense of others, food refusal/aversion and a high –
frequency of single food intake (M arí-Bauset, Zazpe, Mari -Sanchis, Llopis -González, &
Molares -Suárez -Varela, 2013). There is evidence of higher prevalence of food selectivity in
individuals with ASD compared to other individuals . For example, Bandini and colleagues
(2010) noted that approximately 42% of children with ASD rejected foo d regularly compared
to 19 % for TD children. Furthermore, Schmitt, Heiss, and Campbell (2008) revealed that 70 %
of children with ASD selected the food they consumed according to the food’s texture when
only 11% of individuals without ASD engaged in the same behaviour. A large amount of
studies has shown that children with ASD have selective dietary preferences, sug gesting that
they are at increased risk of experiencing nutritional deficiencies that could affect in term
their anthropometrical dimensions (Marí -Bauset et al., 2013 ; Najdowski, Wallace, Doney, &
Ghezzi, 2003; Zimmer et al., 2012).
The existence and detri mental effects (to functioning) of allergic responses on the
daily functioning of individuals with ASD has received growing attention in the research over
the past decade. Boso and colleagues (2010) found that young adults with ASD experienced
worsened all ergic symptoms at times when allergy season s typically peak ed, which in time
resulted in escalation to behavioural difficulties . Furthermore, Sacco and colleagues (2010)
identified a significant association between ASD diagnosis and a history of allergies. Fortuna
and colleagues (2015) report ed that compared to the neurotypical population, young adults

22

with ASD (between the ages of eighteen to twenty -nine years old ) experienced a higher
prevalence of allergies, with approximately 32% of them stating they suffered from one or
more allergies compared to 8% for neurotypical individuals. A recent study revealed that
about 87% of individuals with Asperger’s Syndrome experienced immune allergic responses
such as rhinitis , asthma , and atopic dermatitis (Magalhaes et al., 2009).
The historical focus has been on examination of core ASD symptoms plus secondary
difficulties in relation to their detrimental impacts on daily functioning and long -term
adaptation. Whilst this line of research has advanced understanding o f the autism -related
barriers to functioning it has neglected to recognise that ASD is associated with a number of
strengths, capabilities and talents. More recent researchers have addresses the “positives of
ASD” and the following discussion briefly descr ibes these . Semantic fluency acknowledged
as a relative strength for high functioning individuals with ASD. Researchers have noted that
children with Asperger’s Disorder generated as many words from a given category when
compared to TD children (Boucher, 1 988; Dunn, Gomes, & Sebastian, 1996; Manjiviona &
Prior, 1999), even when those categories included an increased number of unusual category
members (i.e. “yak” for animal) than what was predicted (Dunn et al., 1996). Turner (1999)
found that people with HF A performed adequately in a nonverbal fluency test, considered to
be a measure of the ability to generate novel designs. Hermelin (2001) and Howlin, Goode,
Hutton, and Rutter (2009) reported that ‘savantism’ is more common in individuals with ASD
with the estimated prevalence being 10 percent and one percent respectively. The term savant
refers to an exceptional ability which is not present in the general population with such
abilities having been identified in the areas of mathematical calc ulation, memory, art, and
music (Treffert, 2009). Howlin and colleagues (2009) conducted a study in which the
cognitive skills of individuals with ASD were assessed via performance on the Wechsler

23

Intelligence Scales and reported that about 29% of one 137 individuals show ed strong
evidence of either a savant skill and/or a superior cognitive ability (Howlin et al., 2009).
Interestingly, the presence of extraordinary musical memory was first commented on
by Kanner (1943) in relation to the first group of children he assess ed. Subsequent studies
suggested that excellent musical memory was linked to knowledge about musical structure
(Miller, 1989; Pring, Woolf & Tadic, 2008) and absolute pitch (Heaton, 2003). A generally
agreed -upon research finding indicates that individuals with ASD demonstrate greater
accuracy in processing the musical notes they hear (across the age range), causing them to
surpass their neurotypical peers in memory of pitch. (Heaton, 2009).
It has been argued that individuals with ASD typically utilise a m ore detailed -focused
processing style compared to neurotypical people (Heaton, 2009). Brown and colleagues
(2003) discovered a link between autistic -like traits and special skills amongst musicians with
absolute pitch when compared to musicians without suc h ability. Vital, Ronald, Wallace, and
Happé (2009) reported on the results of a parent survey study which showed that children
with special abilities possessed more autistic -like traits than children without such abilities.
More specifically non -social au tistic -like traits, restricted and repetitive interests/activities
were strongly associated with special abilities (Vital et al., 2009). There is some evidence
suggesting that a detailed -focused cognitive style, relating to attention to and memory for
detail, predisposed children with ASD to being talented. Furthermore, those children’s
general cognitive aptitudes correlated with parental reports of special abilities in memory and
mathematics. Such result has been substantiated by more recent conceptualisat ions of
savantism, believed to accommodate HFA individuals (Heaton & Wallace, 2004; Miller,
1998).

24

An ever -expanding body of research shows that individuals with ASD outperform
their typically -developing peers in a large range of perception tasks, such as spotting a pattern
in a disrupting setting (Pellicano, Maybery, Durkin, & Maley, 2006). Further studies
highlighted the fact that individuals with ASD outperformed TD individuals in auditory
activities, such as discerning sound pitche s (Heaton, 2003), det ecting visual structures
(Perreault, Gurnsey, Dawson, Mottron, Bertone, 2011) and mentally manipulating complex
three -dimensional forms. It appears to also be the case that individuals with ASD do better
non-verbal intelligence tests such as the Ravens Pro gressive Matrices (RPM) in which
participants are required to use analytical skills to complete an ongoing visual pattern, with
an experimental study by Soulières et al. (2009) showing that individuals with ASD
completed the RPM an average of 40% faster than a non -ASD comparison group.
2.4. Comorbid d isorders .
The research is clear on the issue of individuals with ASD also showing evidence of
one or more additional co -existing behavioural, psychiatric, or developmental disorders ( Cath,
Ran, Smit, van Balkom, & Comijs , 2008 ). Comorbid disorders (i.e ., anxiety and depression)
are known to contribute to the severity of ASD features and to create further interference in
daily functioning ( Bellini 2004 ). Therefore, accurate and timely detection of co -existing
conditions is significant to understanding ASD individuals’ needs and development of
targeted treatment plans.
It is suggested that there is temporal aspect to the onset of particular co -existing
disorders with particular conditions being likely to occur during specific life periods. ASD
common co -occurring disorders in late childhood include attention deficit hyperactivity
disorder (ADHD), oppositional defiant disorder (ODD) and anxiety disorders, with
emergence of depression and obsessive compulsive disorder in adolescence/adult life

25

(Mazefsky et al. 2008; Simonoff et al. 2008; Skokauskas, Gallagher, Skokauskas, &
Gallagher, 2010; van Steensel, Bögels, & de Bruin, 2013). A longitudinal study of you th and
adults with ASD ( aged 10 -52 years) reported reductions in parent reported child internalizing
symptoms over a 4.5 -year period (Shattuck et al., 2007); suggesting that symptoms of sadness
and withdrawal in individuals with ASD may lessen, not worsen, with development. While
adolescents and young adults with ASD may have more insight than young children with
ASD, and therefore, be more capable of conveying their emotional problems (Ehlers &
Gillberg, 1993), it does not necessarily mean that younger chi ldren do not experience
depressive symptoms. It makes clinical sense that while younger children with ASD m ight
not be able to explain their emotional difficulties to the same extent as older youth; it is
plausible that both age groups would struggle to ex plain emotional difficulties due to their
autism related communication impairments (Strang et al., 2012). Further, it is suggested that
anxiety disorder appears to decrease from childhood to adulthood (Davis et al. , 2011) and
depression increases with age (Ghaziuddin, Ghaziuddin, & Greden, 2002 ).
There is strong evidential support that children with ASD also suffer from anxiety
(Gillot, Furniss, & Walter, 2001); depression (Lainhart & Folstein, 1994; Perry et al., 2001;
Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006); and Obsessive -Compulsive Disorder
(OCD) (Gross -Isseroff, Hermesh, & Weizman, 2001; McDougle et al., 1995; Russell,
Mataix -Cols, Anson, & Murphy, 2005). Several recent studies have indicated that a
significant number of children with ASD have at least one comorbid anxiety disorder, with
statistics ranging from 29% to 84% of individuals who are affected by ASD and some form
of anxiety (De Bruin, Ferdinand, Meester, De Nijs, & Verheij, 2007; Muris, Steerneman,
Merckelbach, Holdrinet, & Meesters, 1998; Simonoff et al., 2008). For instance, Cath and
colleagues (2008) reported that individuals with ASD showed similar levels of general

26

anxiety symptoms, and had equivalent levels of social anxiety to those individuals with a
diagnosis of Social Anxiety Disorder (SAD) but no t ASD.
A systematic review by van Steensel, Bögels, and Perrin (2011) reported considerable
comorbidity for anxiety in children and adolescents with ASD. It was estimated that about 40%
of children and adolescents with ASD had clinical levels of anxiety or at least one anxiety
disorder, and these substantiate those of previous research such as White, Oswald, Ollendick,
& Scahill (2009). The study conducted by van Steensel and colleagues (2011), indicat ed that
nearly 30% of chil dren ASD suffered also from specific phobia, 17% suffered from OCD and
SAD, 15% experienced Generalized Anxiety Disorder (GAD), 9% had Anxiety Disorder (AD)
and only 2% experienced panic disorder. Avoidant and depressive and/or worrisome
symptoms were cons iderably higher in children with ASD signifying a high level of
comorbidity with anxiety disorders (Muris et al., 1998).
A number of studies have noted that children with ASD may suffer from other co –
existing developmental or psychiatric disorders. Meyer, Mundy, Van Hecke, and Durocher
(2006) mentioned that many children with HFA lack social and emotional reciprocity, have
trouble maintaining eye contact, and have difficulty initiating and sustaining conversations.
Often times, they misread social cues and misunderstand others’ intentions (Meyer et al.,
2006). They have difficulties with recognizing sarcasm and social faux pas (Baron -Cohen &
Wheelwright, 1999; Kaland, Callesen, Moller -Nielsen, Mortensen, & Smith, 2008). When
children with HFA also have an an xiety disorder, it may further impact their ability to interact
with other children. Past studies have found positive correlations between social impairment
and anxiety in children with ASD (Bellini 2004; Sukhodolsky et al. 2008), but these studies
lacked diagnostic anxiety measures, instead relying on anxiety checklists completed by
children or parents. The findings from the study conducted by Chang, Quan, and Wood (2012)

27

suggested that social anxiety in particular may be more impairing to social functioni ng in
children with ASD than other anxiety disorders. However, the participants of these studies
often do not have a formal diagnosis of anxiety disorder and anxiety level is established via
completion of anxiety checklists, results such as these should be considered with caution.
Interestingly, there is minimal agreement on the age at which anxiety might peak and
trough in individuals with ASD . There are contradictory results for the relationship between
anxiety, age and ASD severity, with s ome studies (Kuusikko et al., 2008; Lecavalier, 2006)
suggesting that older children with ASD were more likely to report anxiety, while other
studies reported no age differences (Ando & Yoshimura 1979; Pea It is conceivable that the
non-uniformity of these results is (in part) a consequence of variations in the specific anxiety
subtype under investigation. These findings are consistent with the results of studies
examining anxiety disorders in typically developing children, which discovered that rates of
anxiety disorders typically increased with age (Ford, Goodman, & Meltzer, 2003); rates of
GAD increased with age (Frala, Leen -Feldner, Blumenthal, & Baretto, 2010; Tracey,
Chorpita, Douban, & Barlow, 1997); and rates of separation anxiety disorder were linke d
with a lower mean age (Kearney, Sims, Pursell, & Tillotson, 2003; Last, Perrin, Hersen, &
Kazdin, 1992). Interestingly studies that included younger children with ASD reported higher
prevalence rates of OCD than those that included older children with AS D. OCD in typically
developing children, however, tends to have a relatively late age onset (Costello, Egger, &
Angold, 2005) and is found to increase with age (Ford et al., 2003).
Research investigating depression in individuals with ASD suggests that high rates of
depression range from 17 and 44 %, depending on the age of the sample and measures used
(Green, Gilchrist, Burton, & Cox , 2000; Kim, Szatmari, Bryson, Streiner, & Wilson, 2000;
Strang et al. 2012). Lugnegård, Hallerbäck, and Gillberg (2011) cond ucted structured clinical

28

interviews with 54 adults with ASD, and reported that 70 % had at least one major depressive
episode in their lifetime, whilst 50% had recurring depressive episodes across the lifetime.
Furthermore, suicidal behaviour amongst adole scents and young adults with ASD has been
found to range from 7 to 42 % (Hannon & Tayl or, 2013), as opposed to 4 to 8% in TD
adolescents and young adults (Cash & Bridge, 2009; Gmitrowiez, Szymczak, Kotlieka –
Anezak, & Rabe -Jablonska, 2003; Resch, Parzer, & R omuald , 2008). Mazefsky and White
(2014) discussed the characteristics of ASD that may hinder the emotion regulation needed to
avoid onset of depression and pointed to process es such as , poor inhibition and problem
solving, change inhibition, sensory sensi tivities, and poor cognitive flexibility as contributors
depressive events (Gyurak et al., 2009).
Sturm, Fernell, and Gillberg (2004) have noted that ASD is frequently associated with
Attention Deficit Hyperactivity Disorder (ADHD). Holtmann, Bolte, and Postka (2007)
reported that 30 to 80 per cent of children in their sample who were diagnosed with ASD also
met the criteria for ADHD. Also, those researchers noted that c hildren with ADHD appeared
to exhibit significantly more symptoms of ASD than their typically -developing siblings
(Mulligan et al., 2009). Leyfer and colleagues (2006) explained that 31% of children with
HFA also met the criteria for an ADHD di agnosis. Approximately 24% of children with HFA
experienced hyperactive symptoms as well as higher inattentiveness.
There appears to be substantial crossover of impairments and behavioural features
between individuals with ASD and those diagnosed with ADH D, and this caused clinical
challenge in differentiating between the two disorders (Clark, Feehan, Tinline, & Vostanis,
1999; Leyfer et al., 2006; Lovell, Moss, & Wetherell, 2012; Matsushima et al., 2008)
Nonetheless, Poon (2012) advanced the theory that c o-morbid psychopathology may escalate
challenging behaviours in infants and toddlers diagnosed with ASD. For instance, Matson

29

and colleagues (2011) found that children with ASD, who typically exhibit ed aggressive and
destructive behaviours, possess ed highe r levels of impulsivity and inattention than children
with ASD who did not engage in such behaviours. Generally, greater levels of externalizing
behaviours in children with ASD and ADHD were noted when compared to children with
only a diagnosis of ASD or T D children (Yerys et al., 2009). With regards to children with
ADHD, Tureck and colleagues (2013) discovered that children with ADHD presented with
high rates of repetitive behaviours, tantrum behaviours, in addition to conduct behaviours
when compared to children in the control group. Furthermore, this current study also
established significantly high rates of internalizing and externalizing symptoms for both
children with ADHD and children with ASD. However, the highest rates were noted for
children diagn osed with ASD (Tureck et al., 2013 ). Significant rates of oppositional
behaviour disorder (as opposed to conduct disorder) are suggested for children with ASD
across studies and research groups (Chung, Luk, & Lee, 1990; Simonoff et al., 2008;
Steinhausen & Merzke, 2004).
There are t wo major theories which attempt to explain the basis of these broad autistic
impairments in cognitive terms. The theory of weak central coherence (Frith, 2003) suggested
that people with autism are more inclined to process information in discrete units as opposed
to perceiving integrated units as a larger whole. Thus, autistic individuals are faster and more
accurate at seeing embedded figures within a more complex whole p attern (Mottron , Burack,
Iarocci, Belleville , & Enns , 2003; Shah & Frith , 1983) and at matching whole patterns
presented to them by arranging blocks of their constituent parts (Shah & Frith , 1993). This is
in contrast to people with strong central coherenc e who have a preference for seeing the
‘‘whole picture’’ rather than composite features. Executive dysfunction theory (Hughes ,
Russell, & Robbins , 1994) posits that autistic individuals are primarily compromised in their

30

ability to control, manage and moni tor simultaneous cognitive processes. Whilst each of these
theories provides evidence of characteristic cognitive traits in autism, each is limited in its
ability to explain the spectrum of autistic features and impairments and the
neurophysiological basis of the disorder. The interrelationship between these cognitive traits
and their causal relationship with the behavioural impairments in autistic spectrum disorder
(ASD) remain a subject of debate, not least because of the widely differing level and range of
ability in individuals within the spectrum. Assessing the prevalence and impact of cognitive
traits in autism is particularly problematic as general intellectual impairment is common in
ASD .
Research findings noted that 70% of individuals diagnosed wit h ASD have an IQ of
less than 70 (Chakrabarti & Fombonne , 2005) and 30 –40% of individuals with Intellectual
Impairment meet criteria for ASD (Morgan et al. , 2002). In the broader set of disorders
included under the term pervasive developmental disorder (PDD), where behavioural and
communication difficulties characteristic of autism are present but not to the extent that the
criteria for a diagnosis of autism a re met, assessing autistic traits is yet more problematic.
Here, there may be further confounding factors from the inclusion of disorders which share
some of the features of autism and are also associated with intellectual disability.
A relationship betwee n social symptoms and metacognitive executive processes, like
planning, organisational and monitoring skills, initiation, in addition to working memory, was
different in children between six to fifteen years old diagnosed with ASD and not
characteristic of the TD children. Therefore , stronger metacognitive aptitudes were related to
less autistic social symptoms. Consequently, social symptoms of ASD seem to be linked to a
precise set of executive functions (i.e., metacognitive skills) in which deficiencies h ave been
noted (Geurts, de Vries, & van den Bergh, 2014). For example, Turner (1999) identified

31

deficiencies in ASD children aptitude to independently produce new ideas or information.
Other researchers noted deficiencies in the ability to hold information “online” in the mind
while carrying out an activity (Luna, Doll, Hegedus, Minshew, & Sweeney, 2007), decreased
abilities in planning and/or organizational skills (Sumiyoshi, Kawakubo, Suga, Sumiyoshi, &
Kasai, 2011), and self -monitoring (Grynszpan et al., 2012; Lombardo, Barnes, Wheelwright,
& Baron -Cohen, 2007). A study conducted by Leung, Vogan, Powell, Anagnostou, and
Taylor (2016) revealed that metacognitive deficits and behavioural regulation problems
predicted social impairment in ASD children aged s ix to fifteen years old. This research
proposed that children and adolescents with ASD may require more extensive usage of
decision -making functions for social abilities compared to TD children and teenagers. The
presence of co -occurring disorders in child ren with ASD is associated with lower quality of
life, greater demands for professional help, poorer prognosis, greater interference with
everyday life, and worse outcome (Lainhart , 1999; Matson & Cervantes , 2014; Seltzer ,
Abbeduto, Krauss, Greenberg, & Sw e, 2004; Vannucchi et al. , 2014; Wood & Gadow, 2010).

32

3. Challenges Faced by Parents of Children with ASD Compared to Parents of
Typically Developing Children
Parents of children with ASD face a particular set of challenges that cause them to
experience significant difficulties compared to other parent groups. Overall, the
psychological impact of caring for a child with ASD is reported to be immense for parents
(Cullen & Barlow, 2002). Parents of a child with ASD reported more stress compared to
parents of Typically D eveloping (TD) children and were nearly three times as vulnerable to
psychological ill health and distress (Brobst, Clopton, & Hendrick, 2009; Dillenburger,
Keenan, Doherty , Byrne, & Gallagher, 2010 ; Gau et al., 2012 ). The first stud y to determine
that parents (n=67) and siblings (n=37) of child ren with ASD obtained significantly higher
scores of depression compared to parents and siblings of TD children was cond ucted by
Piven and colleagues (1990 ). Any irregularities or disruptions in daily routines triggered
anxiety in children with ASD and their mothers, the children’s inability to participate in
activities, resistance, and disruptive behaviours triggered anxiety in mothers (Larson, 2006).
The ASD children’s disruptive behaviours or autistic symptoms seemed to be significant
determinant in parents’ mental health status, with parents experiencing lower levels of
distress as th eir child’s behaviour improved over time and became less disruptive (Gray,
2006; Hoffman, Sweeney, Hodge, Lopez -Wagner , & Looney, 2009).
Kring , Greenberg, and Seltzer (2010) conducted a study with 406 mothers of children
with ASD of various ages. The results indicated that children’s health issues were a direct
source of stress for mothers as such issues in children usually le d to behavioural problems,
which increased the mothers’ stress levels. Approximately 41% of parents of a child with
ASD reported experiencing some form of emotional, physical, financial, or marital
relationship stress difficulties compared to parents of TD children (Higgins, Bailey & Pearce,

33

2005; Lecavalier , Leone, & Wiltz, 2006). A study conducted by Ingersoll and Hambrick
(2011) revealed that 56% of parents of eight -year-old child ren with ASD obtained significant
scores in depression and 85% of parents scored in the clinically significant range for
parenting stress. It appeared that mothers and fathers of a child with ASD were affected
differently in their mental health status, with m others being more negatively affected by their
child’s impairment than fathers (Ekas, Lickenbrock, & Whitman, 2010). Similar results were
observed in a study conducted by Davis and Carter (2008), in which more mothers (33 %) of
toddlers diagnosed with ASD t han fathers (17%) reported clinically significant depressive
symptoms. Furthermore, mothers who did not have a husband or a partner were more likely
to be depressed than marri ed mothers (Ekas et al., 2010).
Benjak , Vuletic Mavrinac, and Pavic Simetin (200 9) discovered that parents of
children with ASD reported significantly poorer self -perceived health compared to parents of
TD children. Energy, vitality and social functioning were particularly low dimensions of self –
perceived health. The only dimension of health in which there was no difference with the
parents of TD children was physical health, which can be explained by the fact that 71% of
surveyed parents with children with ASD were under 50 years of age. Another interesting
finding was that 35% of par ents of children with ASD perceived their health as wors e
compared to the previous year, and this was 18% higher in comparison to parents of typically
developing children. This discrepancy in self -perceived health between parents was
confirmed by the findi ng that 41% of parents of children with ASD, in comparison with 30%
of parents of TD children, reported the existence of a chronic medical condition .
The stress experienced by parents of children with ASD was a strong predictor of
height ened risk of divorce (Hartley et al., 2010). However, even though parents of a child
with ASD reported more emotional stress, they remained more resilient compared to parents

34

of TD children (Lam, Wong, Leung, Ho, & Au-Yeung ., 2010). According to a study
conducted b y Lai , Goh, Oei, and Sung (2015) parents of children with ASD reported
significantly more parenting stress symptoms such as negative parental self-views lower
satisfaction with the parent –child bond, and more depression symptoms, than parents of TD
childre n. Despite findings such as these which suggest that parents of children with ASD are
more anxious and depressed and under greater pressure than parents of typically developing
children, the field has rarely focused on an in -depth investigation of psycholo gical outcomes
for this parent group ( Benderix, Nordström, & Sivberg, 2006). Researchers such as Krauss,
Seltzer, and Jacobson (2005) have argued that in -depth investigations into mental health
outcomes have been difficult to initiate with parents of children with ASD because they are
overburdened with numerous and long -term responsibilities in caring for their child during
childhood, adolescence and adulthood as autism is a lifelong condition.
Parents of children with ASD also appear to be in greater distress when compared to
parents of children with other disabilities . For instance, the level of general stress experienced
by parents of a child with autism was significantly higher than for parents of a child with
Down Syndrome (DS) (Dabrowska & Pisula, 2010). Studies conducted with mothers of
children with ASD have report ed higher levels of parenting stress and psychological distress
than mothers of a child with Developmental Delay (DD) (Este s et al. , 2009 ). Studies
compar ing parents of children with AS D with parents of children with another developmental
disorder in relation to mental health status and coping strategies (Estes, et al., 2009;
Greenberg et al., 2004) have generally reported that parents of children with ASD report
more parenting stress an d psychological distress compared to parents of children with other
disabilities .

35

A study conducted by Greenberg and colleagues (2004) r eported that mothers of a
child with DS had lower levels of depressive symptoms compared to mothers of a child with
autism. Differences in parents’ mental health status were observed between parents of a child
with ASD and parents of a child with another developm ental disorder due to several factors.
For instance, parents of a child with ASD reported significantly less satisfaction with the help
they received since their child’s diagnosis (Siklos & Kerns, 2006). In fact, about 93% of
parents of a child with ASD di d not receive adequate financial support for their child’s
therapy (Siklos & Kerns, 2006).
An investigation conducted by Wasserman and colleagues (2010) compared the
mental health of parents of children with ASD to that of parents of children with
schizop hrenia . The findings indicated that parents of children with ASD experienced lower
levels of depression and anxiety compared to parents of children with schizophrenia.
Moreover, a study conducted by Abbeduto and colleagues (2004) indicated that mothers of
young adults with autism experienced higher levels of depressive symptoms compared to
mothers of children with DS and mothers of children with Fragile X syndrome. These
findings might be due to the fact that mothers of children with autism tended to have l ower
family income, reported less use of problem -focused strategies and their children expressed
greater numbers of disruptive behaviours (Abbeduto et al., 2004).
Many more studies have been conducted on the quality of life of parents of a child
with ADD/A DHD compared to the amount of studies that have been conducted on the quality
of life and parental concerns of children with ASD (Escobar et al., 2005; Spira & Fischel,
2005; Strine et al., 2006). A study by Lee et al. (2008) stated that parents of a child with
autism experienced greater levels of child caring burden, a higher likelihood of quitting their
job due to child care issues, less involvement in activities and community services compared

36

to parents of a child with ADD/ADHD. Furthermore, parents of children with autism also
experienced a higher level of concerns about their child’s well -being as they were more likely
to miss school days and repeated more grades than children with ADD/ADHD (Lee ,
Harrington, Louie, & Newschaffer, 2008).
A study by Tarabek (2011) re ported some differences between parents of a child with
ASD and parents of a child with ADD/ADHD. The results indicated that mothers of a child
with ASD obtained significantly lower scores for relationship satisfaction and lower mental
health scores than mothers of children with ADD/ADHD (Tarabek, 2011). This finding
seems to be in line with previous research which exposed that mothers of a child with autism
experienced more symptoms of anxiety and depression compared to mothers a child wit h
Intellectual Impairment (II ) or TD children (Weiss, 2002). However, no significant
differences in mental health scores between fathers of a child with ASD and fathers of a child
with ADD/ADHD could be observed (Tarabek, 2011). Previous research suggested that
fathers of a child with autism might cope by spending more time away from the home
(Myers, Maackintosh, & Goin -Kochel, 2009).
3.1. Mental health impacts a ssociated with parenting children with ASD .
Recent studies have investigate d the impact that having children with ASD has on
parents’ psychological and physical well -being ( Dardas & Ahmad, 2014; Lee, 2009 ). The
most common negative mental health outcomes experienced by parents of a child with ASD
encompassed feelings of stress , anxiety, and depression (Gau et al., 2010 ; Hoffman et al.,
2009 ). A study conducted by Pottie and colleagues (2009) assessed the daily negative mood
and its relation to parenting stress in 93 parents of children with ASD. Participants in this
study were asked to complete initial measures of disruptive child behavio urs, and support
services, then biweekly measures of daily stress, received emotional and instrumental social

37

support, unsupportive social interactions, and mood over 3 months . The findings indi cated
that parents of a child with ASD were at higher risk of experiencing symptoms of parenting
stress when they received low emotional support, experienced marital difficulties, and when
their child engaged frequently in self -abusive and/or disruptive behaviours (Pottie et al. ,
2009). According to several authors ( Benjak, Vuletić Mavrinac, Pavić Šimetin, & Kolarić ,
2011 ; Olsson & Hwang, 2001), parents of children with ASD are a particularly vulnerable
group as they take over practically the entire burden of family care for their severely disabled
child.
Parenting children who have ASD was related to the impaired wellbeing of the
parents themselves (Allik et al., 2006), their higher comorbidity of anxiety, depression
(Olsson & Hwang, 2001; Bailey , Golden, Roberts, & Ford , 2007) and obsessive compulsive
symptoms (Abramson et al., 2005). Cummins (2001) reviewed 12 studies which assessed the
levels of anxiety and depression experienced by primary caregivers of children with ASD, t he
findings explained that caregiving was linked to higher than normal levels of anxiety and
depression. Bebko and colleagues (1987) assessed the impact of symptoms o f autism on
parents of 20 children with ASD , by asking 20 therapists to independently estimate parents'
perceived stress levels. The autistic child's language and cognitive impairment were judged
by parents of children with ASD and by therapists as most severe and stressful. Findings
revealed that individual parents agreed on both symptom severity and degree of stress.
Parents of older children judged symptom severity to be lower, but fathers reported a
continued high level of stress. Therapists judged families as more stressed by the child
symptoms than did families themselves . Parents rated social impairment as one of the most
stressful characteristics of raising children with ASD.

38

Specific sources of parental stress may include certain child c haracteristics such as
expressive language difficulties and cognitive inconsistencies (Bebko et al., 1987; Moes,
1995). A study conducted by Baker -Ericzen , Brookman -Frazee, and Stahmer and (2005)
assessed parental stress in 39 parents of children with ASD before and after their child
entered an inclusive childcare toddler program. As ASD children entered the childcare
program, 59% of mothers of children with ASD reported significantly elevated levels of chi ld
domain stress compared to 17 % of mothers of TD c hildren. At program exit, 46% of mothers
of children with ASD reported significantly elevated levels of child domain stress compared
to 13% of mothers of TD children. The results revealed that poor use of social interaction
skills significantly predicted m aternal child -related stress in mothers of children with ASD.
Furthermore, a study by Mugno, Ruta , Genitori D’Arrigo, and Mazzone (2007 ) investigated
the mental health of parents of children with PDD, A utistic Disorder , and HFA/AS. The
results indicated th at parents of children with PDD showed a significant impairment in their
Quality of Life (QOL) as compared to the other groups, and parents of children with HFA/AS
displayed a lower QOL compared to parents of children with AD. More specifically, m others
of children with PDD reported more decreased physical health, impairment in social
relationship, impairments in their psychological state, and a decreased overall perception of
QOL and health, while fathers displayed a worse perception of their psychological state and
impairment in overall QOL and in social relationship (Mugno et al., 2007) .
Stress proliferation is an additional factor that was posited as a potentially important
mediator linking child impairment to parent distress. Stress proliferation refers to the
tendency for an initial (primary) stressor or stressors to create additional (secondary) stressors
in other areas of the affected individual’s life, potentially resulting in increased psychological
distress (Aneshensel , Pearlin, Mullan, Zarit, & Whitlatch, 1995; Pearlin, Aneshensel, &

39

LeBlanc, 1997; Pearlin , 2000). To date, only one study (Benson, 2006 ) has examined stress
proliferation in the context of parenting children with ASD. In that study, multivariate
analyses showed stress proliferation to be a powerful predictor of self -reported parent ( n=68)
depressed mood, uniquely accounting for a significa nt increase in variance in parent
depression above and beyond that explained by child symptoms alone. In addition, analyses
indicated that stress proliferation partially mediated the effect of child symptom severity on
parent depression, with higher levels of child impairment leading in higher levels of stress
proliferation, which, in turn, resulted in higher levels of depressed mood among participating
parents.
Benson and Karlof (2009) replicated Benson’s (2006) cross -sectional investigation of
stress proliferation using a longitudinal design. This study utilised longitudinal data from 90
parents of children with ASD to replicate and exte nd the prior cross -sectional study on stress
proliferation by Benson (2006). The regression analyses indicated change in stress
proliferation to be a significant predictor of change in parent depressed mood. In addition,
consistent with Benson (2006), stress proliferation was found to mediate the relationship
between child symptom severity and parent depressed mood, with increases in child symptom
severity leading to increase in stress proliferation which, in turn, resulted to increases in
parent depressed mood. Olsson and Hwang (2001 ) assessed parental depression in 216
families of children with ASD and/or learning disabi lity and in 214 control families. Findings
revealed that mothers of children with autism showed the highest depression scores.
3.2. Physical impacts associated with parenting children with ASD.
Experiences of physical exhaustion and fatigue have been shown to adversely affect
the health and wellbeing of parents of children with ASD. Unlike tiredness, which is typically
alleviated by rest, fatigue has been defined as an enduring sense of physical and mental

40

exhaustion not easily relieved by rest (North American Nursing Diagnosis Association, 2001;
Ream & Richardson, 1996). Fatigue has been conceptualized as a health outcome that can
have an impact on cognitive functions, such as concentration, memory and deci sion-making
(Hockey , Maule, Clough, & Bdzola , 2000; van der Linden , Frese, & Meijman, 2003).
Although several qualitative studies have documented that exhaustion is common among
parents of children with ASD and other disabilities (Benderix et al., 2006; Lo pez-Wagner ,
Hoffman, Sweeney, Hodge, & Gilliam, 2008; Vickers , Parris, & Bailey, 2004), no known
studies have explored the extent to which parents of children with ASD experience fatigue,
and its potential impact on their well -being and parenting skills.
Fatigue is viewed as a serious health concern for parents of children with ASD
(Fisher , Feekery, & Rowe, 2004; Ward & Giallo, 2008) and has been associated with reduced
daytime functioning and impai red clarity of thinking (Fisher et al., 2004). It has also been
linked to wellbeing difficulties, including depression, anxiety and stress (Ward & Giallo,
2008; Giallo , Wood, Jellett, & Porter, 2011). In a study conducted by Benderix and
colleagues (2006), experiences of 10 parents from five families of a child with ASD were
collected prior to and 2 years after entrusting their 10 – to 11 -year-old child with autism to a
group home. Hermeneutic phenomenological analysis of narrative interviews with the parents
before the child’s moving sho wed them experiencing fatigue which contributed to cognitive
decline at work and at home. Parents also reported that fatigue was the main reason why they
did not socialize, which was the reason why they found a place for their child in residential
care.
In a study conducted by Giallo and colleagues (2011 ) examined the extent to which
parents of children with ASD experienced fatigue and its relationship to other aspects of
wellbeing and parenting. Fifty mothers of children with ASD aged 2 –5 years participa ted in

41

the study. M others who reported high levels of fatigue reported higher depression, anxiety
and stress. A range of demographic, child, and parent factors were associated with maternal
fatigue, including lower educational attainment (high school or tr ade certificate), more
problematic child behaviour, poorer quality diet, exercise and sleep and high perceived need
for social support. The strongest predictors of fatigue were quality of maternal sleep,
perceived need for social support, and quality of ph ysical activity. It was not surprising that
poor sleep quality was associated with higher levels of fatigue as parents of children with
ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of
sleep pro blems for child ren with ASD (Ho ffman, Sweeney, Gilliam, & Lopez -Wagner, 2006;
Polimeni , Richdale, & Francis, 2005; Richdale & Prior, 1995). Finally, mothers who reported
high fatigue were less efficacious and less satisfied in their parenting role.
Epel and colleagues (2 004) found that compared to controls, mothers of 39 children
with chronic medical illnesses or developmental disabilities (including ASD) had greater
oxidative stress and accelerated shortening of their telomeres. Compared to mothers of TD
children, mother s of children with ASD had cellular aging that was accelerated by nine to
seventeen years, which may lead to earlier onsets of age-related diseases. Gallagher, Phillips,
Drayson, and Carroll (2009) found that compared to mothers of TD children, mothers of
children with ASD and other developmental disabilities mounted a poor antibody response to
pneumococcal vaccinations, indicating a reduced capacity to ward off infections. As a group,
mothers of adolescents and adults with ASD evidenced a profile of HPA hypoactivity as
compared with normative patterns manifested by mothers whose similarly aged children do
not have disabilities. This cortisol profile may initially seem counterintuitive given th e
endocrine response to acute stressors, but it is similar to findings on other groups
experiencing chronic stress, including parents of children with cancer, combat soldiers,

42

Holocaust survivors, and individuals suffering from PTSD (Heim , Ehlert, & Hellma mmer ,
2000; Mille r, Cohen, & Ritchey , 2002; Yehuda , Boisoneau, Lowy, & Giller , 1995; Yehuda,
et al., 1995).
A study by Seltzer and colleagues (2010) demonstrated that mothers of children with
ASD presented with the physiological profile characteristics of individuals with chronic
stress. Participants were obtained from two longitudinal studies, the target group comprised
86 mothers of a child with ASD selected from the AAA study (Seltze r et al., 2010 ) and the
comparison group comprised 171 mothers with TD children (the MIDUS study; Brim, Ryff,
& Kessler, 2004). The down -regulation of hormone activity observed in parents of children
with ASD may have undesirable consequences, such as contributing to fatigue and attention
problems in parents of children with ASD.
The findings indicated that child’s history of behaviour problems interacted with daily
behaviour probl ems was a predictor for the morning rise of the mother’s cortisol. A history of
elevated behaviour problems moderated the effect of behaviour problems the day before on
maternal cortisol level. Seltzer et al. (2010) found that relative to controls, mothers of adults
with ASD had lower levels of cortisol throughout the day. Seltzer and colleagues (2010)
mentioned that cortisol dysregulation associated with an increased vulnerability to hormone –
related health issues in mothers of children with ASD should be f urther investigated. Another
study conducted by Dykens and Lambert (2013) used a stress biomarker, diurnal cortisol, to
detect the intensity of stress levels experienced by mothers of children with ASD and of
children with other developmental disorders. Of 91 mothers of children with a developmental
disorder, with 30 mothers having a child with AS, h igher stress levels and lower health
ratings were noted, especially for 89% of mothers with ASD children compared to 53% for
mothers of children with other disa bilities. Furthermore, uncommon cortisol awakening

43

responses and evening rises were differentially linked with anxiety, depression, health
problems and employment status.
3.3. Social/Familial impacts associated with raising children with ASD.
Higgins and colleagues (2005) sent a survey to caregivers of children with ASD in
Australia to assess the relationship between ASD characteristics, family functioning and
coping strategies. A total of 53 participants completed and returned their survey to the
researc hers, the findings indicated that c aregivers reported somewhat lower levels of marital
happiness, disturbances in family cohesion, and family adaptability compared to normative
data (Higgins et al., 2005). The results obtained by Higgins and colleagues (2005) suggested
that levels of family cohesion and family adaptability with a child with ASD may be at risk of
falling outside the healthy family functioning range. There are some obvious and practical
explan ations for the risk of family dysfunction in families with a child with ASD.
Characteristics of children with ASD, such as low social competency and persistency make
social outings for families with a child with ASD difficult (Kraijer, 2000).
Larson (2006) conducted a qualitative study in order to identify the development and
use of routines, using data from nine mothers of children with ASD. Interview transcripts
were coded by sorting data into categories and searching for variations within the category
and the relationships between categories The findings revealed that m others of children with
ASD often expresse d some feelings of loneliness when making decisions and strategizing
about how to change daily routines and foster development of daily living skills and self -care
in their child (Larson, 2006). Irregularly experienced events, especially holidays and famil y
outings, were particularly difficult to manage for most families, although these difficulties, as
a consequence extended and nuclear family togetherness was limited due to the child’s

44

difficulties in participating in these events. Family traditions and r ituals were often modified
to accommodate the child’s specific needs (Larson, 2006).
Gray and Holden (1992) sent a survey to parents of children with ASD, they used data
from 172 Australian participants . The researchers surveyed factors that affect ed the psycho –
social well -being of the parents of children with autism. In particular, this study examined a
wide variety of sociodemographic and family variables in terms of their effects on
depression, anxiety and anger. Gray and Holden (1992) discovered that p arents of children
with ASD reported greater conflicts with non -disabled children and more problems with
family integration. The experience of raising a child with ASD can be quite stressful on
individual parents, as both mothers and fathers of children wi th ASD have been shown to
experience significant stress when compared to parents of TD children, as well as parents of
children with other disabilities (Fisman , Wolf, & Noh, 1989; Rao & Beidel, 2009). These
negative individual parent experiences could subs equently have a damaging impact on their
spouses, as well as marital satisfaction (Fisman et al. , 1989).
Existing research also recognises the positive influences of ASD on family
functioning, including psychological and emotional strength, improved communication skills
and higher levels of empathy and patience (Bayat, 2007; Davis & Gavidia -Payne, 2009;
Pakenham , Sofronoff, & Samios, 2011). For example, Bayat (2007) investigated factors that
contributed to making the family unit stronger in spite of d ealing with the challenges of
having a child with ASD. A survey was completed by 175 parents , and t he results indicated
that families of children with ASD displayed factors of resilience such as becoming united
and closer as a family, making positive meani ng of disability and finding greater appreciation
of life in general. Research into the positive impacts of ASD on families is encouraging but is
only relatively recent.

45

Hartley and colleagues (2010) investigated the relative risks and timing of divorce in
391 families of children with ASD in a longitudinal study asking questions on family
structure between 1998 and 2004, and t hey used a representative sample of parents of TD
children to make comparisons. Results suggested that parents of children with ASD had a
prolonged period of vulnerability to divorce. Specifically, there was a relatively high, and
equivalent, risk of divorce for both the comparison group and families of children with ASD
during the son or daughter’s early childhood (until age eight years). When compared to
parents of TD children, the risk of divorce remained high into the child’s early adulthood for
parents of children with ASD. More precisely, it was established that parents of children with
ASD were at an increased risk for divorc e when their child was between eight to thirty years
old. Hartley and colleagues (2010) discovered that parents of children with ASD had a n
overall divorce rate about 24 % compared to approximately 14 % for parents to TD children.
The heightened risk of divo rce in parents of children with ASD is consistent with findings
that these families experience an extraor dinary level of stress (Seltzer, Greenberg, Floyd,
Pettee, & Hong, 2001; Smith et al., 2010 ).
Freedman, Kalb, Zablotsky, and Stuart (2012) examined the relationship between
ASD symptomatology and family structure. Participants’ data for this study were collected
from the 2007 National Survey of Children’s Health, a population -based, cross -sectional
survey. A total of 77,911 parent interviews were completed on children aged 3 –17 years, of
which 913 reported ASD diagnosis. Interestin gly, the results suggested that symptom severity
neither increased nor decreased the likelihood of a child with ASD to live in a two biological
or adoptive parent household. These results were consistent with previous findings on the
impact of symptom severity on divorce (Hartley et al. , 2010) and overall family functioning
(Bristol , 1987; Freeman , Perry, & Factor, 1991), in which other factors, including parental

46

depression and support, were more significant predictors of divorce. Such findings support
the family systems theory suggesting that these families might in fact be more inclined to stay
together.
Minuchin (1985) described a common phenomenon in which families maintain their
relationships in the face of adversity . In essence, these families might stay together because it
is safer to live in discord than to face the unknown change that marital separation inevitably
brings. Other families might remain togethe r, despite significant relationship difficulties, in
order to ensure that they can provide financially for their child’s multitude of needs. Based on
this line of thought, minimal differences in divorce rates could be expected among parents of
children wit h ASD when compared with the general population. Tomanik, Harris and
Hawkins (2004 ) investigated the relationship between behaviours exhibited by children with
autism, and maternal stress levels. The researchers administered self ‐report measures to 60
mothers of a child with autism. Children were between two and seven years of age. The
results indicated that mothers’ stress had been associated with the lack of independence of a
child with ASD (Tomanik et al., 2004), low degree of s elf-sufficiency or low levels of social
skills (Dabrowska & Pisula, 2010), and daily exposure to the child (Phelps, McCammon,
Wuenshch, & Golden, 2009).
The stress fathers experience has been associated with the social acceptance of the
child, whereas the mothers’ stress has been linked to behaviours that are caused by the child’s
diagnosis of autism. Fathers of children on the spectrum seem to require more social support
to parent effectively, whereas mother and father require each other’s spousal support to lessen
marital stress (Kersh , Hedvat, Hauser -Cram, & Warfield, 2006; Saloviita, Itälinna, &
Leinonen, 2003). The negative consequences include a decrease in fathers’ involvement in
child care and greater stress in the family environment (Barbarin, Hugh es, & Chesler, 1985;

47

Bristol, Gallagher, & Schopler, 1988). Furthermore, parents of children with special needs
may have to offer not only more time, energy, and resources for their child’s well -being but
also offer these important qualities for a longer p eriod (Seltzer et al., 2001).
For couples with satisfying relationships, in contrast, the challenge of dealing with a
child’s disability can strengthen and enrich their relationships (Havens, 2005). Although there
is a risk that a couple may neglect their marriage when they have a child with a disability,
parents are often aware of this challenge and are determined to keep their marriages strong
(Pelchat, Lefebvre, & Perreault, 2003). In other cases, it pushed spouses away from each
other, with mothers and fathers occupying distinct roles in their families (Aylaz , Yilmaz, &
Polat, 2012). These distinct roles sometimes fostered resentment, particularly among mot hers
who believed they received inadequate support from their husbands (Gray, 2003 ; Luong ,
Yoder, & Canham, 2009). Strain also arose when one parent blamed the other for th eir child’s
diagnosis (Fletcher, Markoulakis, & Bryden, 2012).
A study by Brobst and colleagues (2009) investigated the balance of the roles of
parent of a child with ASD and the roles of being a partner. Comparisons were made between
25 couples of a child with ASD and 20 couples of TD children for both stressor ( i.e., child's
behavio ur problems) and relational ( i.e., relationship satisfaction) variables. The findings
explained that perceived spousal support, respect for one’s partner, and commitment did not
differ between parents of children with ASD and parents in the comparison group. On the
other hand, the results indicated an important link between support from one’s spouse and
relationship satisfaction and found that when the mothers of children with ASD were faced
with more intense behaviour problems in their children, they reported less suppo rt from their
husbands (Brobst et al. , 2009). Ultimately, some parents divorced ( Meirsschaut , Roeyers, &
Warreyn, 2010), and others worried that the constant care they provided to their child with

48

ASD would put their marr iage at risk for divorce (Divan, Vajaratkar, Desai, Strik -Lievers, &
Patel, 2012).
A variety of social difficulties were identified as having adverse effects on parents of
children with ASD. Parents reported that they received criticism from strangers when they
were out in public (Farrugia, 2009; Gray, 2002; Lasser & Corley, 2008; Ludlow , Skelly, &
Rohleder, 2011; Midenc e & O’Neill, 1999; Neely -Barnes, Hall, Roberts, & Graff, 2011;
Safe, Joosten, & Molineux, 2012; Woodgate , Ateah, & Secco, 2008). According to parents’
reports, stranger thought their children were acting out and should be disciplined (Farrugia ,
2009; Lasser & Corley, 2008; Safe et al., 2012). In certain circumstances, parents connected
such events to the fact that ASD is a disorder with no physical signs (Lasser & Corley, 2008;
Midence & O’Neill, 1999; Neely -Barnes e t al., 2011). Parents convey ed diverse reactions
with regards to the judgment of strangers. In certain cases, parents made the decision to
ignore such strangers, whereas other parents confronted strangers and others educated them
about the nature of ASD (Gray, 2002; Neely -Barnes et a l., 2011 ; Woodgate et al., 2008).
Previous studies have reported that children with ASD exhibit behaviours that are
disruptive and challenging to manage, creating chaos throughout the household and extended
family. It can leave parents feeling locked at home, as they fear taking the child out in public
lest he create a scene or run into danger. Accordingly, these problematic behaviours are a
major source of stress for parents (Allik et al., 2006; Blacher & McIntyre, 2006; Kersh et al. ,
2006; Konstantareas & Homatidis, 1989; Matson & Nebel -Schwalm, 2007). A study by Gray
(2002 ) investigated the type of stigma experienced by parents of children with ASD. Thirty
three families of a child with HFA were interviewed for the purpose of the study. The issues
that were covered during the interview consisted of different categories: the onset of
symptoms, referral experience and diagnosis, the nature of the child's present symptoms and

49

the effects of autism on the family. Gray (2002) found that parents of children with ASD
experienced different types of stigmatisation and discrimination due to their child’s diagnosis.
The experience of stigmatisation among parents of children with ASD seems to be complex,
as it includes biological differences of the children, the negative evaluation of those
differences by others, adverse reactions of oth ers, and negative social and emotion al
outcomes for parents (Green , Davis, Karshmer, Marsh, & Straight, 2005).
Glazzard and Overall (2012) investigated the experiences of parents raising a child
with ASD. A mixed -method approach consisting of questionnaires and semi -structured
interviews was used in order to elicit parental perspectives of raising a child with ASD. Two
semi -structured interviews were conducted wi th parents of children with ASD and
questionnaires were sent to parents in two spec ial schools , with 20 participants completing
the study. Glazzard and Overall (2012) reported that some parents of children with ASD
found it eas ier to withdraw from society than to deal with the repercussions of putting their
children through unfamiliar si tuations. Other studies have demonstrated the multiple
challenges that parents of children with ASD face due to their child’s difficulties to conform
to social norms. Such difficulties have led families to make alterations to their day -to-day
living circum stances which can be challenging to put into practic e at times (Bristol, 1984;
Dunn, Burbine, Bowers, & Tantleff -Dunn, 2001; Altiere & von Kluge, 2009). Family
functioning has been detected as another area of difficulties for parents of children with ASD,
it refers to the extent to which families communicate effectively, manage daily life, and foster
positive relationships (Zubrick, Williams, Silburn, & Vimpani, 2000). Research findings
suggested that when there was a child with ASD, family functioning was often affected in
terms of greater strain on the family system; less participation in recreational activities
(Myers et al. , 2009); and less flexibil ity and connectedness (Higgins et al. , 2005). Numerous

50

qualitative studies have shown that family life comes to centre on the needs of the child
diagnosed with ASD (Hoogsteen & Woodgate, 2013; Myers et al., 2009). Family difficulties
might be influenced by a number of individual, intra -familial, and social factors. For
example, limited social support (Broml ey et al. , 2004; McConnell, Savage, & Breitkreuz,
2014), socio -economic status, individual wellbeing (Georgiades, Boyle, Jenkins, Sanford, &
Lipman, 2008), children’s behaviour problems, and difficulty coping (Khanna et al., 2011)
are all factors that can make it difficult for families to function optimally.
Having a child with a disability often leads to the necessity to take responsibility for
multiple roles including educator, caretaker, and advocate (Klein & McCabe, 2007).
According to Lutz, Patterson, and Klein (2012) the needs for education and advocacy were
recurring themes due to the struggles for securing medical care, behavioural health services,
and educational services. The findings from this study are validated by Woodgate and
colleagues (2008) study in which parents of children with ASD refereed to advocacy as
“fighting all the way” and identified “being direct, learning all you can, and educating others”
as essential to helping themselves and other families with autism. Woodgate and colleagues
(2008) conducted qualitative interviews with 16 parents of children with ASD in order to
describe the experiences of parents who have children with ASD. Even though parents had
learnt to handle challenging behaviours or made the conscious decision to accep t their
children’s unpredictable behaviours, it was the judgements and even the lack of
understanding from others that made parents of children with ASD feel judged and it also
made them feel like a “failure” (Ludlow et al. , 2011).
Parents who participated in the study by Ludlow and colleagues (2011) also reported
difficulty in finding a child -minder to look after the child, as the child presented particular
challenges which minders were not typically experienced or trained to deal with. The

51

researchers addressed challenges faced by parents of children diagnosed with ASD . Reports
were made from the 20 parents who participated in a qualitative interview, exploring parents’
experiences, the daily challenges they faced, and what helped them to c ope. A thematic
analysis of the data identified five core categories: Dealing with challenging behaviour;
dealing with judgements from others; lack of support; impact upon the family; coping and the
importance of appropriate support . The results reported that parents of children with ASD had
limited access to respite services . Grandparents were in some cases cited as a resource of
respite in this regards, where grandparents could be called on to assist or look after the child
for a short period of time. How ever, this was not always the case and a number of parents
described the lack of understanding from grandparents, who did not understand autism and
regarded the child’s behaviour as a response to bad parenting. Furthermore, even though
support was found to be beneficial for parents of children with ASD, other factors such as
lack of available time, travel difficulties and childcare constraints can make it difficult for
parents to seek and receive such support (Burke and Cigno, 1996).
Financial difficulties experienced by parents of children with ASD were investigated
in a study conducted by Järbrink, Fombonne and Knapp (2003). Sixteen parents of children
with ASD completed the Client Service Receipt Inventory (CSRI) questionnaire, which
aimed to collect detailed information on the client’s service use and family support in order to
estimate component and total costs. The findings indic ated that financial costs wer e high,
with the total cost of raising a child with a disability estimated to be approximately three
times greater than the cost incurred by raising a typic ally developing child (Järbrink et al. ,
2003). Results findings indicat ed that the financial costs of caring for a child with ASD can
be associated with adverse effects in the lives of f amilies of children with ASD (Jä rbrink et
al., 2003; Sen & Yurtsever, 2007). Unfortunately, only a few studies have directly examined

52

the costs that families of children with ASD must face, but rather have implied the costs that
families of children with ASD must pay.
Fletcher and colleagues (2012) interviewed eight mothers of children with ASD to
analyse the costs and benefits related to all aspects of the participants’ lives. Mothers
acknowledged a number of expenses associated with their day -to-day experiences. For
example, all mothers discussed the changes in their work or financial situations that resulted
from raising a child diagn osed with ASD. Common expenses such as treatment costs, special
dietary requirements, child care, private lessons, and cleaning / repairing homes were all
mentioned as additional financial costs these families had to undergo. In addition, mothers
mentioned the lack of funds available for family vacations, household renovations and/or for
siblings’ future educational pursuits/funds. The study by Jä rbrink and colleagues (2003) also
explained the added financial strain of caring for children with ASD. Costs as sociated with
out-of-pocket expenses and use of formal and informal services were reported as contributing
to the strain experienced by mothers.
Fletcher and colleagues (2012) also reported the impact the ASD diagnosis had on
parents’ employment and repor ted that parents had to take off time of work or give up their
employment due to the added responsibilities of caring ( i.e., additional medical
appointments) for a child with ASD, whereas one of the mothers reported having to work full
time in order to pay for the additional costs associated with her child’s treatment. Fathers’
employment was also reported to be effected, but not to the same e xtent as mothers. Research
by Jä rbrink et al. (2003) and Gray (2003) support the findings within this study regarding the
alterations in employment resulting from the ASD. Further Gray (2003) reported that
mothers’ careers were more affected than fathers’ employment. Interestingly enough ,
regardless of the costs reported and the hardships endured by these families, all of the women

53

expressed the positives that arose in their situations as well, a topic that has received limited
exposure w ithin the literature (Fletcher et al. , 2012).
Gray ’s (2003 ) investigation highlighted the fact that the commitment of some fathers
to work increased substantially after their child received a diagnosis of ASD. Gray (2003)
reported on a father mentioning that he spent more hours at work even if he was not p aid for
working overtime so he would have to spend less time with his daughter diagnosed with
ASD. For parents who had to stop working because of their child’s numerous demands that
conflicted with their work life, mixed feelings and emotions were usually reported (Altiere &
von Kluge, 2009; McCabe, 2010). Furthermore, Altiere and von Kluge (2009) found that
families of a child with ASD were hurt financially due to the pressure of having to rely on
one income to provide for the family day -to-day expenses. P arents had to utilise their
retirement funds and at times they also had to take a second mortgage (Altiere & von Kluge,
2009). Aylaz and colleagues (2012) unravelled the fact that some parents of a child with ASD
could not cover the costs associated with c aring for a child with ASD.
3.4. Limitations from previous research f indings .
The research into the parent -oriented mental, physical, and social effects of raising a
child with ASD, whilst revealing a number of interesting and reasonably uniform findings on
parent experiences, also shows evidence of several limitations in relation to participant
features and data -collection/analysis methods. The first key limitation relates to researchers’
preference for collecting data via the usage of interviews or group responses in order to
represent the “voices” of parents of children with ASD, and to provide a rich data pool for
subsequent qualitative analyses ( i.e., thematic analyses). Whilst qualitative data such as these
allow for detailed individualised responses, they are often low on the standardisation required

54

for generalisation to other similar groups of parents of children with ASD (Glazzard &
Overall, 2012; Larson, 2006; Ludlow et al., 2011).
The second key limitation consists of the utilisation of self -report from parents of
children with ASD, which has the potential to bias not only interviews but also the
completion of self -report scales. In the case of self -report scales researchers seek to minimise
bias by using detailed, rather than brief scales, by se lecting scales that measure specific
aspects of performance and by giving parents a survey which allows for cross -referencing of
information. However, these strategies are rarely used and consequently the potential for
skewed data is greater (Brobst et al., 2009; Fletcher et al., 2012; Jellett , Wood, Giallo, &
Seymour, 2015).
The third key limitation relates to participants’ characteristics . Most studies report on
findings mainly from Caucasian mothers, limiting the generalisability of the re sults obtained
with regards to other groups of individuals such as, fathers of children with ASD and/or
mothers and fathers of children with ASD from different ethnic backgrounds ( Fletcher et al.,
2012; Shtayermman, 2013). The fo urth key limitation (which also relates to participants’
characteristics), relates to a significant number of studies reporting on findings from highly
educated participants with ( most ly) above -average family incomes. These couples probably
receive more professional services, have greater knowledge and acces s to existing resources,
and, as a result, might have a lower stress than many other couples and single parent s caring
for children with ASD. This narrow selection of participants could have biased reported
results on parental exp eriences (Brobst et al., 2009; Jellett et al., 2015; Park , Turnbull, &
Turnbull, 2002).
The fifth limitation relates to the processes typically employed by researchers to
recruit participants . Researchers tend to recruit parents of children with ASD through autism

55

organisations, websites and newsletters, meaning that parents of children with ASD not
connected to those organisations will most likely be unable to participate in the research
(Baker-Ericzen et al., 2005; Glazzard & Overall, 2012 ).
The sixth key limitation relates to researchers’ using cross -sectional models to
conduct their study instead of aiming to provide a lifespan perspective of parents of children
with ASD by conducting longi tudinal studies (Lutz et al., 2012). A majority of research is
conducted on mothers with autistic children in specific life stages , instead of the same
participants across different stages of their lives . Collecting longitudinal data would
contribute to the understanding of the journey that parents of children with ASD go through
(Benson & Karlof, 2009; Bolton, Golding, Emond, & Steer, 2012 ).

56

4. Psychosocial Factors Associated with Enhanced Stress -Coping Responses in Parents
of Children with ASD
Parents of children with ASD do not react equally to the multiple challenges of parenting,
more specifically parents’ level of stress have been rep orted to vary with studies indica ting
that parents are sometimes likely to be affected by low or no discernible stress. Despite
numerous problems, parents of children with ASD do cope with autism and often cope
successfully (Bristol, 1984; Marcus , Kunce, & Schopler , 1997 ). The parents of children with
ASD use coping strategies to tolerate and minimize st ressful eve nts. Managing the demands
of stressors is vital because the outcome can escalate to unmanageable levels or crisis (Twoy ,
Connolly, & Novak, 2007). A moderate amount of cross -sectional research exists that looks
at how families cope with autism at particular phases of the child’s development (Marcus,
1977; Bristol, 1987; Gray, 1994; Hastings et al., 2005 a). There is increasing interest in
identifying the factors which might facilitate parent coping, in order for researchers to
understand parents ’ of ASD children coping skills and to incorporate it into parent support
interventions.
The specific conditions that contribute to higher stress are not always agreed upon in the
scientific literature (Grant & Whittell , 2000). While studies show that the disability impact is
mediated by a child’s age and type of developmental disability (comorbidity, severity), others
show that these static conditions are not in themselves factors that influence stress associated
with par enting and caregiving. In fact, a number of recent studies suggest that the well -being
of these parents depends not on static conditions but on dynamic conditions that are related to
their situation and that can be changed. These conditions include the acc essibility and
availability of resources to help parents with their parental responsibilities ( Kuhaneck et al.,
2010; Kuhn & Carter, 2006; Weiss, 2002 ).These dynamic conditions also include the use of

57

positive cognitive reframing (Hastings e t al., 2005 a; Pozo, Sarriá, & Brioso , 2011); parents
gaining access to perceived greater social support (Gray, 2002; Lin, Tsai, & Chang, 2008;
Kuhaneck et al., 2010); parents ability to plan ahead their schedule (Kuhaneck et al., 2010;
Weisner , Matheson, Coots, & Bernheimer , 2005).
Kuhaneck and colleagues (2010) conduct ed a qualitative study to explore the perceptions
of effective coping strategies on parenting stress in mother s of children with ASD . In-depth
interviews were conducted with 11 mothers of children w ith ASD with a focus on e nquir ing
about their personal coping methods. The mothers who participated in Kuhaneck and
colleagues’ study (2010) reported the importance of obtaining knowledge about autism and
sharing that knowledge with others. Kuhn and Carter (2006) found that the more time that
had passed since the family received the diagnosis the greater wer e the feelings of self –
efficacy and they suggested this was due to a mother having more time to gain knowledge
about autism. The body of literature on self-efficacy suggests that the strategy of educating
oneself may improve s elf-efficacy and thereby allow mothers to feel more in control, to feel
more confidence in the ir parenting role, and to be less stress ed with their parenting
experience (Kuhn & Carter, 2006; Weiss, 2002).
Specific coping strategies used by parents of children with ASD that have been identified
using a variety of research methods include accessing social and family supports,
professional supports and services, support groups, and religion (Boyd, 2002; Bristol, 1987;
Gray, 2006; Hastings et al., 2005 a; Luther, Canham, & Young Cureton, 2005; Twoy et al.,
2007). Social and spousal supports have been found to be extremely important in reducing
stress and improving adaptation for famil ies of children with disabilities. Social supports,
including support groups, appear to be particularly effective in reducing parenting stress and
are associated with better mental health (Boyd, 2002; Luther et al., 2005). Kuhaneck and

58

colleagues (2010) di scovered through their results that parents’ ability to share the workload
with a spouse, in particular, was quite a significant factor that helped them cope with stress.
The sample of mothers reported that they relied on their spouse to be aware of home routine s
and split the responsibilities. Similarly, Bayat (2007) found working together, being flexible,
and communicating to be important characteristics in resilient families of children with
autism. The mothers in the current study also felt a sense of relief knowing that in their
spouse, they had someone who they could relate to. Higgins et al. (2005) reported that
primary caregivers felt that it was important to talk over personal feelings and concerns with
their spouses; spousal support was considered at least moderately helpful for coping.
Benson (2014) used a cohort sequential design and multilevel modelling on a sample of
113 mothers of children with ASD, to assess the effects of four coping strategies
(engagement, disengagement, distraction, and co gnitive reframing) on multiple measures of
maternal adjustment were assessed over a seven years period. Benson (2010) has described
cognitive reframing as a coping strategy which over time adjusts maternal psychological
well-being by increasing parent self -efficacy. The effect of cognitive reframing, such as
coping efforts made to perceive the stressful situ ation in a more positive light, on maternal
adjustment was examined. Consistent with study hypotheses, cognitive reframing was found
to exert a signifi cant positive effect on parenting efficacy over time (Benson, 2014) . In
addition, consistent with prior cross -sectional work by Benson ( 2010 ), cognitiv e reframing
was found to reduce the negative effects of maladaptive child behavio ur on maternal distress.
These findings support prior theory and research indicating the value of using positive
cognitions as a coping method, particularly in stressful situations that are severe, chronic, or
largely uncontrollable (Folkman & Moskowitz , 2004 ; Pakenham et al. , 2011 ; Park , 2011 ).
Planning and having a consistent or at least predictable routine is the typical advice offered to

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parents of children with autism. While little is known abou t the effectiveness of family -based
planning , Weisner and colleagues (2005) have found that sustainability of routine was an
important outcome for families and one which varied greatly between families of children
with a disability. Examining the efficacy of planning for family functioning may be an
important avenue of research in the future.
4.1. Co ping style, social support and personal resilience patterns in parents of
ASD children .
4.1.1. Coping style definitions and research findings for parents of children with
ASD.
This section of the chapter will present a review of the research on the copping styles
and methods researchers have investigated in relation to parents of children with ASD. The
link between coping and two widely researched dynamic factors, such as social support and
personal resilience will be described . Coping has been described as one factor assisting
parents to adjust successf ully to their ch ild’s ASD, when other parents do not. Coping is a
broad process referring to the manner in which parents respond, cognitively and
behaviourally, to demands associated with their child’s autistic disorder (Benson, 2014).
Coping has been posited as a key mechanism by which parents adapt to stress, including the
stress of parenting a child with ASD. Defined as “the process by which individuals respond to
threats of stress” (Smith , Seltzer, Tager -Flusberg, Greenberg, & Carter , 2008 ), researchers
have often gro uped coping strategies into two major categories: problem -focused coping
strategies which aim at directly solving the problem or changing the source of stress, and
emotion -focused coping strategies which aim at reducing or managing feelings of distress
associated with the stressor. In studies of caregivers, including parents of children with ASD

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and ID, use of emotion -focused coping strategies have generally been associated with poorer
mental health outcomes among parents, while use of problem -focused copin g methods has
often, but not always, been linked to improved parent adjustment (Abbeduto et al., 2004 ;
Aldwin & Ravenson , 1987 ; Seltzer, Greenberg, & Krauss , 1995 ).
The two main approaches to investigating various aspects of coping and their impacts
on parent functioning are quantitative methods qualitative methods. The first research
approach has used quantitative methods and focused on the factors that serve to ameliorate
the stressful effects of the disorder (Bristol, 1987; Milgram & Atzil, 1988; Gray & Holden,
1992; Hastings et al., 2005 a). Among the various factors that are significantly r elated to
various forms of parental distress and adjustment is the gender of the parent (Bristol et al,
1988; Milgram & Atzil, 1988; Gray & Holden, 1992) degree and type of social support
(Bristol, 1987; Gray & Holden, 1992), additional life stresses (Bris tol, 1987), age of the child
(Bristol, 1987; Gray & Holden, 1992; Hastings et al., 2005 a) and coping activities (Bristol,
1987; Hastings et al, 2005 a).
The second research approach on coping and autism has been qualitative in its
methodological approach a nd emphasized either the nature of the families’ problems
(Marcus, 1977; DeMeyer, 1979; Marcus et al., 1997) or the patterns of coping that parents
employ to cope with their child’s autism (Marcus, 1977; Gray, 2003). This type of research
indicates that pa rents use a variety of coping strategies to deal with their child’s autism
including support from family and friends (Marcus, 1977; Gray, 1994), the use of service
providers (DeMeyer, 1979; Gray, 1994), advocacy and support groups (DeMeyer, 1979) and
religious beliefs (Gray, 1994). A significant amount of research that deals with general
coping over the life course (Aldwin, 1991; Thoits, 1995) and it indicates that the coping
activities of individuals change over time (Lazarus, 1996). In particular, researc h indicates

61

that there is a general tendency for young adults to use more problem -focused coping
strategies and middle -aged adults to use emotion -focused coping strategies (Lazarus, 1996).
The former refers to coping with the situation by changing the natu re of the problem and the
latter refers to coping that distracts the attention of the individual affected by a stressful
situation. Included in this latter category of coping would be such activities as expressing
feelings, praying, and withdrawal (Lazarus , 1996).
Parents of children with ASD use a range of coping strategies and resources when
faced with pare nting/caregiving stress (Hall & Graff , 2011; Hastings et al. , 2005 a; Lai & Oei,
2014; Luong et al. , 2009). In a review paper, Lai and Oei (2014) highlighted that parents of
children with ASD used both adaptive ( i.e., cognitive reframing; seeking social supp ort) and
maladaptive ( i.e., avoidance and disengagement) coping strategies, with an inclination
towards adaptive coping methods such as seeking social support and positive reinterpretation.
Among parents of children with ASD, the use of adaptive coping strategies has also been
linked to positive mental health outcomes (Benson , 2010; Penley, Tomaka, & W iebe, 2002;
Taylor & Stanton , 2007). While it may then be expected that parents of children with ASD
adapt well to parenting stress, past studies have also consistently reported elevated stress
symptoms in these parents (Hayes & Watson , 2013 ). It is therefore unclear if parents of
children with ASD are coping with parenting/caregiving stress adequately and effectively
(Hayes & Watson , 2013 ).
Sivberg (2002) studied strain on the family system and compared the coping
behavio urs of parents of ch ildren with ASD to those of parents with non -ASD children. The
results supported the hypothesis that there are differences in the types of coping behavio urs
employed. The parents with a child with ASD scored higher in coping behavio urs of
distancing and es cape, a behavio ur aimed at withdrawal from a stressful situation. The

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parents in the control group, in contrast, scored higher in use of self -control, social support,
and problem solving. The family’s perception of stressful experiences also affects family –
coping strategies. The use of reframing as a coping strategy was elucidated as a possible wa y
of successful coping (Luther et al. , 2005). Redefining personal goals and family goals and
priorities, reframing helped the families cope with autism.
4.1.2. Social support definitions and research findings for parents of children with ASD .
Social s upport is a term that describes aspects of an individual's social context that
may enhance psychological and physical well -being (Pottie et al. , 2009). Two types of social
support have been identified: received and perceived. Received support refers to the actual
receiving of assistance from others. Perceived support refers to ones’ perceptions of the
availability of support and/or satisfaction with the support provi ded (Pottie et al., 2009).
Professionals and agencies that provide specialized services to families of children with ASD
should be monitoring parents’ perceptions of their needs and of how well they are met by
programs and finally responding to the needs identified by the families in order to promote
healthy adaptation (Siklos & Kerns, 2006). They investigated parents of children with ASD
own perceptions of needs, and whether parents felt their needs were being met. They
administered the modified Family Ne eds Questionnaire (FNQ; Waaland, Burns, & Cockrell,
1993) to address needs for children with developmental disorders. Fifty -six parents of
children with ASD and a comparison group of 32 parents of children with DS completed the
FNQ. Siklos and Kerns (2006) identified fundamentals that family support should embody.
According to their study , services should both enable and empower parents to make informed
decisions regarding their disabled child, be open to the needs of the entire family and be
flexible in ac commodating to the unique needs of individual families.

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Research indicates that stress proliferates in the sense that an initial stressor can
increase the likelihood of additional stressors occurring in other area s of life (Benson &
Karlof, 2009 ). For parents of children with ASD, the disability is the initial stressor, but
raising a child with a disability introduces challenges throughout the life cycle for the child as
an individual and the family as a unit. Perceived social support is an impor tant means of
coping because the extent to which individuals regard themselves as being cared for and
supported by others is positive (Smith et al, 2010). Research indicates that mothers of
children with autism spent more time providing child care, less ti me in leisure activities, had
more stressful events, arguments, and fatigue than mothers from a nationally representative
sample of children without disabilities (Smith et al, 2010). Evidence suggests that parents of
children with ASD who perceived more so cial support reported better family adaptation and
reduced stress (Lin, Orsmond, Coster, & Cohn, 2011).
Research on the presence of social support for ASD has been published in numerous
peer-reviewed studies. Siklos and Kerns (2006) found that parents of children with ASD
received similar support as parents of typically developing children. The difference was in the
quality of the support received by the two groups of parents: the parents of children with
ASD reported receiving aggravations from more of t he same agencies compared to the
parents of typically developing children. Parents’ beliefs about receiving adequate social
support for themselves and their child have been shown to be very important for successful
family adaptation (Siklos & Kerns , 2006). Social supports identified as effective include
support groups, support from one’s spouse, family, and friends, the availability of leisure
time, support from community programs, professional help, and the availability of services
and programs geared towa rds families who have a child with autism. Families who receive
these supports exhibit healthier adaptations to hav ing a child with ASD (Siklos & Kerns ,
2006).

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Social support is reported to be a critical factor that reduces the negative
psychological effec ts of raising a child with ASD (Bishop , Richler, Cain, & Lord, 2007;
Bromley et al., 2004; Hassall , Rose, & McDonald, 2005). In particular, informal support,
such as that provided by friends and family, has been shown to be effective in reducing stress
among mothers of children with ASD. For example, mothers of children with autism who
perceive receiving higher levels of support, especially from spouses and relatives, report
lower levels of depression -related somatic symptoms and fewer marital problems (Dunn et
al., 2001). Several studies have also shown that mothers of children with ASD first turn to
their spouse for supp ort, then to their immediate family, and finally to other parents of
children with disabilities (Boyd, 2002).
Boyd (2002) reviewed research findings from eight peer-reviewed journals and two
edited b ooks (Schopler & Mesibov, 1983/ 1984) concerning the use o f social support to
alleviate stress in mothers of children with autism. Although different types of informal
support have been associated with increased well -being, research has not systematically
examined whether one source of informal support is more ef fective than another in helping
mothers of children with ASD cope with stress. For example, even though mothers of
children with ASD may turn to their spouse first to get support (Boyd , 2002), their spouse
may not be the most effective support. It is possib le that their spouse may be equally
distressed and unable to p rovide effective support (Coyne, Ellard, & Smith, 1990) and that
extended family ( i.e., parents and siblings) or close friends may be more beneficial in
promoting mothers’ well -being. Indeed, research suggests that women turn to individuals
outside their marriage ( i.e., friends and other family members) when they do not receive
adequate support from their spouse (Julien & Markman, 1991). Moreover, among mothers of
critically ill children, socia l support from friends and family has been shown to buffer the

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adverse effects of having low spousal support (Rini et al., 2008). The current study
investigated the relative effects of three types of informal social support (support from
partners, other fa mily members, and friends) on the overall well -being of mothers of children
with ASD.
Several studies differentiate social support into formal and informal supports. Formal
social support is defined as aid that might be social, psychological, physical, or financial and
is given through an organisation or agency (Bristol & Schopler, 1983). These types of formal
social support include services from professionals such as therapists, psychologists, etc., who
work in social service settings. Formal supports mi ght also include structured organizations
such as social clubs or churches (Boyd, 2002). Informal support was defined as “a network
that may include the immediate and extended family, friends, neighbours, and other parents
of children with disabilities” (B ristol & Schopler, 1983).
Examples of informal supports include other individuals close to the family who
provide help and assistance (Boyd, 2002). Freedman and Boyer (2000) specifically looked at
social support through a “family supports” lens in the context of developmental disabilities.
They defined social support as “services, resources, and other types of assistance that enable
individuals with developmental disabilities of any age to live with their families and to be
welcomed, contributing member s of their communities” (p. 59). In their focus group analysis,
a number of supports reported by parents emerged. These types of family supports included:
respite services, home health care, family education and training, family counselling, support
groups and case management. These family supports were found to have directly benefitted
parents and children on educational, emotional, and financial levels (Freedman & Boyer ,
2000 ). In another study, Cassidy, McConkey, Truesdale -Kennedy, and Slevin (2008) aske d
parents (n = 104) about the social support they received. The findings indicated that more

66

stress was experienced when parents reported child’s behaviour problems and the social
limitations they experienced as a family. Another interesting finding indicated that support
received from professionals or informally from family and friends, or from other parents of
children with ASD, was not associated with reduced stress in this sample of parents (Cassidy
et al., 2008).
It is suggested that optimism and social support are associated with increased well –
being among mothers of children with ASD (Bishop et al., 2007; Greenberg et al., 2004).
Although not systematically investigated, research has also suggested that informal suppo rts,
such as those provided by partners, friends, and family may be particularly beneficial in
promoting maternal well -being in this population (Boyd, 2002). Moreover, research with
other populations suggests that optimism and social support are positively related to each
other and that social support mediates the optimism -psychological well -being relationship
(Brissette , Scheier, & Carver , 2002; Dougall , Hyman, Hayward, McFeeley, & Baum , 2001;
Shelby et al., 2008). An emerging literature, however, suggests that optimism may mediate
the social support -psychological well -being relationship (Karademas, 2006). Little is known,
however, about how these processes unfold in mothers of children with ASD. A study was
directed toward understanding how these intrinsic and extrinsic factors promote well -being
among this population which is especially susceptible to experiencing elevated levels of
stress (Ekas , Whitman, & Shivers, 2009). Three different sources of informal social support,
including partner, other family m embers, and friends were examined as mediators as well as
moderators of the optimism -maternal well -being relationship.
According to Cobb (1976), social support aids in coping with crisis and adaption to
change. This idea can be applied to a family systems perspective since it is similar to the
Double ABCX Model with family coping to specific stressors (Bristol, 1987). Research

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studies demonstrated an inverse relationship between stress and social support for parents of
a child with ASD. For example, when mothers perceived social supports as being more
available, they reported significantly less stress than those who did not perc eive social
support as being as available (Gill & Harris, 1991). The perceived availability of supports
also applies to parents of children with disabilities. For example, one finding illustrated that
there is a relationship between both mothers’ and fathe rs’ perceived stress levels and the
support received from relatives and friends; this relationship yielded a negative correlation
(Hadadian, 1994).
Sharpley, Bitsika, and Efrimides (1997) found , in relation to an Australian sample of
parents, that lower parental stress was related to parents who had a higher level of
understanding about their child’s problem behaviours and had also received assistance by
family members. Similar research demonstrated that as the higher number of perceived and
experienced n eeds of mothers increased, a positive family relationship was established. In
turn, there was less stress and greater well -being within the family system (Dyson, 1997;
White & Hastings, 2004). Therefore, parents who reported using more social supports and
more helpful social supports also reported higher levels of well -being than for parents who
reported less (White & Hastings , 2004) . Many researchers suggest that families experience
high levels of stress in raising a child with ASD and that these levels of stress are
significantly higher compared to 28 parents of typica lly developing children (Mancil, Boyd,
& Bedesem, 2009). In turn, there may be a high need for social support because stress levels
are so severe.
Therefore, this may be why families who exp erience high levels of stress in raising a
child with ASD may seek out more social support than those who have lower levels of stress
(Taylor -Dyches , Wilder, Sudweeks, Obiakor, & Algozzine , 2004). The idea that social

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support can help dec rease parental str ess may be due to “perceived expertise” of the family
member who offers respite care for the parents (Sharpley & Bitsika, 1997). This type of
respite care includes emotional and social support that is made through members of the
immediate family, such as g randparents, aunts, uncles, and siblings. Receiving social support
from these types of individuals suggests a high degree of family support. Family social
support from immediate family members has also been documented. For example, results of
the supports used from the parents sampled in a study by Sharpley and Bitsika (1997) showed
that 61.5% of parents reported having other family members help in the assistance of child
care. However, this finding also suggests that there may be a higher need for family s upport
within a number of families due to 38.5% of parents sampled who did not receive this type of
support.
Tunali and Power (2002) found that social support from the extended family can be
crucial in meeting the social and affiliative needs of parents. This finding was similar to an
implication discussed by Sharpley and Bitsika (1997), which suggests that parents may value
social support the most when assistance is provided by immediate family members. Also, the
assistance to the family is most effectiv e when it includes an understanding or knowledge of
the child’s diagnosis of ASD. Other sources of stress that are linked to social support
included: the child’s educational placement, especially for inclusion in mainstream
classrooms; difficulty obtaining babysitters and respite care 29 providers; and managing daily
life of the child with a developmental disability (Dyson, 1997).

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4.1.3. Personal resilience patterns definitions and research findings for parents of
children with ASD .
There is some variation in how researchers conceptualise and define personal
resilience; however, most definitions are uniform in referring to an individual’s ability to lead
a more successful life than expected in the presence of adversit y (Brooks, 1994). Resilience
relates to a person’s capacity to navigate through life regardless of harsh conditions or
misfortune and to make the necessary adaptations to maintain equilibrium (Alvor d & Grados,
2005). Masten (2001 ) describes resilience as a “class of phenom ena characterized by good
outcomes in spite of serious threats to adaptation or development” (p. 228). It can be
described as a sense of competence in the context of significant challenges to adaptation or
development (Ungar, 2004). Luthar (2000) describe s resilience as a dynamic process
encompassing positive adaptation within the con text of significant adversity. Gordon (1995)
defined resilience as the ability to flourish, mature, and increase ability and skills in the face
of adverse situations. Parent s of children with ASD are faced with a great deal of adversity in
their daily lives. When they rise above these challenges and continue to develop a healthy
adaptation despite their difficulties they can be considered resilient.
Resilience within families affected by autism in not yet a well -researched area but it is
clear that this concept can assist in exploring the question of why some people cope well with
stresses while others do not is a fascinating concept (Heiman, 2002). One’s ability to cope or
to seemingly be resilient is an admirable quality and identifying how they do this is of great
importance if others wish to emulate their success (Mundy & Sigman, 1989). It is important
to identify elements that enable families to cope effectively and emerge from a crisis or
persistent stress. During the past decade, a number of family researchers have been interested
in finding why some families facing adversity manage to function well and come out

70

stronger, while others when fac ed with a similar situation do not (Cowan , Cowan, & Schulz,
1966; McCubbin, Cauble, & Patterson, 1988; Patterson, 2002 ; Walsh , 1996 ). The concept of
family resilience and its focus on factors leading to a family’s well -functioning in view of a
crisis is part of a movement in positive psychology (Seligman & Csikszentmihalyi, 2000)
towards identifying factors of health as opposed to factors of pathology (Antonovsky , 1987;
Antonovsky & Sourani , 1988) that has been the traditional approach in developmental and
clinical psychology.
Family resilience has been looked at either as an interaction of two groups of risk and
protective factors (Rutter , 1987), or as a flexible process indicating the family’s strength at
different points during the life cycle of the fami ly, and within different circumstances (Walsh ,
2003). This latter approach considers a family resilient when it demonstrates strength, even if
it may not demonstrate the same attribute at another point in time (Walsh , 2003). Several key
factors which contr ibute to a family’s becoming resilient are: (1) making meaning of
adversity, (2) affirming strength and keeping a positive outlook, and (3) having spirituality
and belief system (Walsh , 1998). In addition, for a family to rebound in face of a challenging
situation, the family needs to possess certain organizational qualities, such as flexibility,
connectedness, communication and being able to utilize resources (Walsh , 2003).
Many families of children with autism have managed to overcome the constant
challenges and trials of having a child with autism. Ungar (2004) describes a constructionist
approach to resilience as the outcome from negotiations between an individual and his /her
environment in which the individual remains healthy amidst conditions which are collectively
viewed as adverse. Families that include a child with autism can be viewed in this context.
A diagnosis of autism would collectively be viewed as an adversi ty to cohesive family life.
The family’s ability to remain healthy and cope with such adversity contributes to their

71

resilience. Ungar (2004) explains that “researchers of resilience continue to conduct studies
in the hope of revealing ways to inoculate children against personal, familial, and
environmental acute and chronic stressors” (p. 342 -343).
Ungar (2004) clarifies that the constructionist’s view of resilience is that the factors
are unique to each individual and their social grouping and that th e challenges are relative to
the lived experience of the individuals. This is of particular interest when investigating
resilience within the subject matter of autism, as the experience of each family affected by
autism will be unique with exclusive entit ies. Resilience is the process of adapting well in the
face of adversity, trauma, tragedy, threats, or even significant sources of stress (Masten,
2001). Stress is often associated with family and relationship problems, serious health
problems, or workpla ce and financial stressors (Masten, 2001). The concept of resilience
includes not only the ability to withstand but to also rebound from a crisis (Heiman, 2002).
Harris and Glasberg (2003) explain that several families of children with autism demonstrate
an impressive sense of resilience and strength in their experience, learning to balance hard
demands with grace and humour.
O’Brien (2007) attributes resilience in families affected by autism to flexibility.
Learning that your child has a lifelong deve lopmental disorder is stressful and challenging to
any family, yet it is clear that some families adapt and adjust more readily than others and
their resilience comes from their malleable qualities and learning to live with uncertainty
(O’Brien, 2007). Res ilient parents of a child with autism invariably seek to develop the
necessary skills to deal with their child’s atypical behaviours. To succeed or to surpass the
risk associated with adversity a person must draw upon all of his or her resources: biologic al,
psychological, and environmental (Gord on, Longo & Trickett, 2000 ). Resilient parents of
children with autism achieve this goal. Resilience can emerge with support and proper

72

intervention (Sivberg, 2002). Appropriate intervention can help to mitigate the likely feelings
of guilt and vulnerability associated with diagnosis (Stern & Bruschweiler -Stern, 1998).
Family members can be encouraged and their sense of order or control can be re -established
with assistance from community, extended family, and fr iends (Naseef, 2006).
Heiman (2002) lists the contributing variables of resilience as, successful adjustment
in terms of self -esteem, social support, problem solving skills, well -defined faith, coping
skills, interdependence and the ability to reframe b arriers and obstacles. These characteristics
enable parents to function and to maintain their morale and optimism during times of crisis
and to cope in a productive way (Heiman, 2002). Families of children with autism can be
some of the strongest, most vi brant people. Moreover, it is their healthy adaptation that will
prove to be one of the greatest prevailing res ources for their children (Dunlo p & Fox, 1999).
Regardless of how many professionals are involved with the child, the most influential and
significant effects will be achieved by the child’s family (Alper, Schloss & Schloss, 1994).
Families are truly instrumental in the growth and development their children with autism
achieve. The extent to which a child and his or her family can meet everyday challenges can
predict the ultimate outcome for the child as well as for the other family members (Dunl op &
Fox, 1999).
Research findings presented by Bitsika, Sharpley and Bell (2013) explained that even
though resilience could be seen as a potential buffer against anxiety and depression for
parents of children with ASD, these findings required further examination before conclusive
acceptance. Bitsika and colleagues (2013) also proposed that the data they obtained regarding
resilience had the potential to advance understanding of the pathways by which parents of
children with ASD progress from their experiences of intense daily stress to anxiety and
depression. Further, because of the buffering e ffect noted for resilience, potential avenues for

73

intervention and training for these parents may be considered. For example, psychological
resilience is associated with availability of social supports (Bonanno , Galea, Bucciarelli, &
Vlahoz, 2007). Therefo re, increasing the availability of social services to parents may lead to
increases in parental resilience and, via a flow -on effect, increased ability to cope with the
stress of parenting a child with ASD (Bitsika et al., 2013).
In a qualitative case study Dale, Jahoda and Knott (2006) determined that mothers
who felt that they were solely responsible for their child with autism suffered from feelings of
isolation and depression. They also concluded that the role of social supports available to the
family significantly contributed to the mother’s reduction in stress. Social supports that were
deemed useful included counselling for parents and their children and early intervention
programs for the child with autism (Dale et al., 2006). Families of childre n with autism are
faced with great challenges (Herman, 1992). Parents of children with autism are inundated
with difficult and persistent problems in p arenting (Dale et al., 2006). Heiman (2002)
conducted a qualitative study and interviewed thirty -two par ents of children with autism, and
determined that “families either adapt flexibly and mobilize into effective action or freeze in
various degrees of rigid, ineffective reactions, whereas others tend to resist or even deny the
diagnosis itself” (p. 160).
Previous research findings showed that resilient coping is a protective factor for
health complaints in parents of people with ASD (Bekhet, Johnson, & Zauszniew ski, 2012 ).
As described before ( Fernández -Lansac , Crespo López , Cáceres, & Rodrí guez -Poyo, 2012 ,
Nabors et al., 2013 ; Tang et al., 2013 ), higher scores in resilie nce have been associated with
less anxiety, insomnia, depression and somatic symptoms in caregivers. Thus, high resilience
was observed in caregivers who had the ability to maintain and look for new social support

74

resources, and in turn, this behaviour was believed to reinforce resilience ( Lovell et al.,
2012; Wilks & Croom, 2008 ).
A qualitative study conducted by Pastor -Cerezuela, Fernández -Andrés, Tárrag a-
Mínguez and Navarro -Peña (2015 ) indicated that parents of children with ASD perceived
themselves as moderately resilient to adversity. Nonetheless, some comments collected in the
interview in suggested good resilience levels, in some parents of the ASD group. The parents
of children with ASD claimed t hat “their life makes more sense now than before having their
child, ” “their child had helped them to be better people, to have the necessary energy to act,
to overcome difficult situations, to solve problems . . .” (Pastor -Cerezuela et al., 2015, p.9)
These comments suggest that, despite the challenges faced by parents of children with ASD,
some of them show adaptive management and even a positive contribution to the family
dynamics (Pastor -Cerezuela, et al., 2015 ). In this review, indicators of resilience in parents of
children with ASD included two factors related to depression and competence, respectively,
optimism and self -efficacy. This could explain the significant relationship found in this study
between resilience and parental stress related to thes e two factors; depression and
competence. Indicators of resilience, such as optimism and self -efficacy, are predictors of a
greater ability to cope with the challenge of raising a child with ASD.
In relation to study 1 , the delivery of a support group will act as the intervention , the
effects of which will be measured via any changes ( i.e., anxiety, depression) and personal
resilience. It was suggested that increased knowledge/skill could impact resilience, and as a
conse quence an interest in building skills in three different content areas via three different
support groups arose .

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A vast majority of research conducted with parents of children with ASD appears to
focus on social support. The proposed support groups for study 1 are an example of social
support, and the aim of study 1 will be to detect the effects a group -based social support
programme will have on parents’ coping. As a consequence, social support is one of two
areas of focus when investigating the psychos ocial factors associated with enhanced coping
in parents of children with ASD. Personal resilience is the second psychosocial factor
investigated in relation to enhanced coping in parents of children with ASD. This factor has
been given increasing interest in the research but it has not been formally addressed within
that particular group of participants. Furthermore, a focus was given to personal resilience as
resilience might be capable of change after parent participation in a programme designed to
incre ase their level of skills in understanding their child’s behaviour, managing their own
lives, or both. The focus of the three support groups offered in study 1 will be on increasing
knowledge and skill as a vehicle for positively affecting personal resilie nce in our participant
groups.

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5. Major M odels of Support Developed for Parents of Children with ASD
An investigation of the different ways in which parents access social support and the
different functions of support parents seek is essential to design more effective psychosocial
support interventions for parents of children with ASD. Twoy and colleagues (2007 ) analysed
the answers of 55 parents of children with autism who completed the Family Crisis
Orientation Personal Evaluation Scales (F -COP ES) in order to identify the types of support
accessed by parents of children with ASD. The results indicated that 68% of the 55 parents
pursued general support from friends, and 93% of parents wanted to gain information and
advice from other parents of ch ildren with ASD. Of those 55 participants, 80% also sought
support from professionals in the area of autism. These findings indicate that though general
support from friends and family members is important, specific support from families who
have had the s ame experiences or support from professionals with knowledge about ASD is
especially desired.
Moh and Magiati (2012) addressed this gap: they found that parents’ experiences with the
support services were qualitatively different depending on their stress l evel. When parents
consider their experiences with professionals as being positive (the support workers listen to
their concerns, consider them as partners, and provide them with useful information), they
report having a lower stress level. Another recent study concluded that there is an important
link between parents’ stress levels and their positive or negative perception of their
experiences with the support services (Hall & Graff, 2011 ). The study indicated that parents
who have a lower stress level hav e a more positive perception of their situation and the
resources available to them and that they also have better coping strategies. The parents’
perception and subjective evaluation of the services, based on their experiences, could be a
key to both thei r well -being and their adaptation to their situation. Subjective interpretations

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of careers can be of greater importance than the objective circumstances in which careers find
them.
It appears that group support for parents of children with ASD can offer them the
information, understanding, and acceptance they search for. Woodgate, and colleagues
(2008), explained that 14 parents experienced extreme social isolation and lack of
understanding from others as a result of having a child with ASD. This signific ant finding
proposes that a crucial need of parents of children with ASD to cope with their child’s
diagnosis is to find acceptance and support from others. Little research has been done on
outcomes for families and caregivers involved in support groups fo r autism or other
developmental disabilities. Counselling services have also been offered to parents of children
with ASD and the effectiveness of such services has been addressed in previous research. The
different treatment modalities included cognitive behavioural therapy (Feinberg et al., 2014;
Kenney, 2010), positive psychology strategies (LaPlante, 2013), relaxation therapy (Gika et
al., 2012), acceptance and commitment therapy (Blackledge & Hayes, 2006; Kowalkowski,
2013). Finally, parents of childre n with ASD have been able to access support through family
members and friends, which has been referred to as “informal support” in past research.
The focus and format of the support parents receive has the potential to not only to assist
them in meeting the challenges they confront in their personal lives but can also impact on
the methods they adopt in parenting their children with ASD (Robert, Leb lanc, & Boyer,
2014 ). Therefore, the question of w hat constitutes effective support for this parent group is
important to examine from the perspectives of the types of support models typically
implemented with parents and any existing evidence of the effec tiveness of particular models
from the research. In this chapter, these issues will be examined in relation to three key

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components of group -based parent support : the specific models used for support provision,
the focus and content of information covered , and the procedures for support delivery.
The review of the research on group support for parents of children with ASD conducted
for this thesis suggested that there is great inter -group variation in relation to multiple
features which include: purpose, s tructure, facilitation processes , level and nature of training
for facilitators, m ethods through which support wa s provided, and whether participants were
exposed to set or are open -ended content and topics in nature. Despite these differences,
parent sup port groups are underpinned by the philosophy that those with shared experiences
are in a unique position to provide authentic empathy, support, and practical advice and
suggestions (British Columbia Ministry of Health Services, 1993; Dennis , 2003; Mead &
McNeil , 2004 ).
5.1. Informal group support models for parents of children with ASD .
In a conceptual analysis of peer s upport, Dennis (2003) identified peer support as a
concept embedded within the social relationship construct. Dennis (2003) differentiate d
embedded social networks, such as family members, friends, neighbours from created social
networks, which includes self -help groups and support grou ps. According to Dennis (2003)
self-help groups can be viewed as unstructured as parents get together to talk among
themselves, whereas support groups tend to be more structured as they are typically led by
facilitators with a focus on covering specific c ontent. Self -help groups are sometimes referred
to as consumer -operated groups, peer -to-peer, family -to-family, or parent -to-parent groups
have limited or no professional involvement, while support groups have included professional
involvement (Dennis , 2003). Several different models of group support run by professionals
were found in the literature. Many commonalities among these models are highlighted below
as well as some innovative strategies to take into consideration. Peer support groups, which

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operates to provide information as well as a sense of community in order to combat feelings
of isolation in one’s struggles, need to be implemented in ways that take into consideration
the topic area, target population, and goals of the program.
Samadi, McCo nkey and Kelly (2012) provided information on families of a child with
ASD sharing their experiences an d learning from one another. Those researchers offered
seven group -based sessions to two groups of parents ( n=37) of children with ASD. The
following information was addressed in the seven sessio ns offered to participants: 1) S ession
1: Introducing parents to one another and providing an overview of the course: its aims, ethos
and content, and expectations placed on parents ; 2) S ession 2: What is ASD? D efinitions,
features, causes. How does it affect your child; 3 ) Session 3: After the diagnosis. Parental
reactions, what helps; 4 ) Session 4: Interventions and services. Overview of ASD approaches
to promote communication, services available in Iran and i nternationally. Intensive
interaction; 5 ) Session 5: Myths and reality of ASD. The talents of people with ASD.
Identifying and building on a child’s abilities and interests; 6 ) Session 6: Society and ASD.
Reactions of others, parental advocacy and self -help, and changing attitudes; 7) S ession 7:
Looking to the future. Further information needed. Possible formation of parent NGO in Iran.
Samadi and colleagues (2012) used a pre -post, cross -over design to evaluate the specific
impact of the group. The changes found among the parents in the first group were replicated
with the second group. Moreover, the changes were sustained up to 15 weeks after the course
ended. Although there were variations across the parents, in general they reported feeling less
stress, h ad better emotional wellbeing and family functioning and made more use of problem –
focused coping strategies. The changes were attributed mainly to an increase in the informal
supports among the parents and their feelings of empowerment. A resource pack has been

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developed to enable the group sessions to be easily repeated and for facilitators to be trained
in its use.
Connolly and Gersch (2013) designed a qualitative, three -staged study to look at ways of
supporting parents of children on the waiting list fo r assessment. Focus group discussions
were analysed using thematic content analysis to identify themes to facilitate the development
and evaluation of a pilot parent education group. The study comprised three different stages
named, “Stage One: research”, “Stage Two: intervention” and “Stage Three: evaluation”. In
stage one of the study, two parents participated in a focus group to explore their experiences
of previously having children on a waiting list for an assessment for ASD.
In the second stage, five participants attended the intervention g roup. The group included
four mothers and a father, representing four children. The g roup facilitators consisted of t hree
members of the multi -disciplinary team who were present for each session. The content of the
group was designed to reflect what the literature said about provision of approp riate supports
and strategies for parents of children with ASD . The sessions took place once a week over
four weeks and lasted two and a half hours. A total of six sessions were conducted,
investig ating the following topics: 1) S ession 1: Introduction to the Autism Services, the
Diagnostic Process; ASD; 2 ) Session 2: Communication – typical and atypical
communication; de veloping communication s kills; 3) S ession 3: Behaviour – introduction to
analysing and managing behaviours; 4) S ession 4: Emotions, the family – introduction to
emotional regulation strategies; self -care; considering needs of siblings; needs of the family
(Connolly and Gersch, 2013).
In stage t hree of the study con ducted by Connolly and Gersch (2013) four participants
completed an evaluation form at the end of the final session. Three participants attended a
post-programme focus group to evaluate the programme’s usefulness to them. A semi –

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structured interview schedule was followed . Data was transcribed and analysed as earlier.
This study, regarded participants as experts and consulted with them to inform the design and
delivery of a programme for parents with similar experiences. A parent programme was
designed and implemented for parents of children on the waiting list. The programme was
evaluated and found to be of use to parents, providing information, support and
empowerment.
5.2. Formal group support models for parents of children with ASD.
Considering that seeking support and using support services are the strategies most used
by parents of children with ASD in response to stress generated by their situation, researchers
have postulated that parents’ well -being and satisfaction greatly depended on the system ’s
response of finding them formal support and the help they needed. Formal group support
involves parents in structured interaction, often via completion of activities such as
discussing a key topic of concern to the group, with other parents who are expe riencing
similar circumstances with their children with ASD led by a facilitator with a focus on
covering specific content. This type of group support is believed to facilitate acceptance and
provide valuable support and information for parents (Paluszny, 1979; Tommasone &
Tommasone, 1989 ). The research suggests that parents of children with ASD are frequent
participants in formal support groups run by autism associations and specialist government
facilities and report valuing the opportunity to share opin ions and experiences as well as
provide information that might be useful to other group members (Tommasone &
Tommasone, 1989 ). Also, because all parents are experiencing similar difficulties with their
children, group members are less likely to edit what they say from fear of receiving
disapproval or non -acceptance (Lin et al., 2011; McCabe, 2008).

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Group -based support programmes developed for parents of children with ASD have
generally focused on providing label -driven information on ASD as well as generic advice on
treatments design ed to build functional skills ( i.e., in communication) and ways of managing
children’s atypical or challenging behaviour (Bitsika & Sharpley, 2004 ). Child -focused
parent support programmes such as these have been shown to produce limited long -term
positive outcomes in child and family functioning and researchers have proposed a number of
reasons to acc ount for this lack of effectiveness which include: minimal focus on the
emotional state, mental well -being and resilience levels of parents; discussion of autism in
general terms without elaborating on how this disorder would manifest for the individual
children of these parents; and a bias towards presenting parents with generic behaviour
management strategies without assisting them to develop a deeper understanding of the
adaptive value of their children’s apparently bizarre behaviour (Abbeduto et al., 20 04; Altiere
& von Kluge , 2009). Lyons, Leon, Phelps and Dunleavy (2010) have argued that these
limitations, which arise from poor programme design, have led to parents feeling
overwhelmed when attempting to implement behaviour management techniques (learned in –
session) in the home environment and poor generalisation of learned “autism” knowledge to
understanding their children’s responses as these occur in day -to-day life. Those authors have
also argued that the place to start in supporting parents of children with ASD is to build their
emotional resilience and positive mental health status.
The search for research -based formal support group models for parents of children with
ASD, with a focus on content and delivery was performed for this thesis. That search which
extended from 1998 -2014 identified 13 studies which m et the criteria of: 1) Formal support
involved a facilitator; 2) Structured groups had to be attended for a minimum of four sessions;
3) Specific content was delivered during the groups; and 4) Some form of measurement was

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used to assess changes in some as pect of participant psychosocial functioning . The major
findings of the review of these 13 studies are discussed below.
Eight of the 13 studies presented intervention sessions in group settings, while only five
studies intervened with participants individually ( Campbell, 2003 ; Feinberg et al., 2014 ;
Kenney, 2010 ; LaPlante, 2013 ; Whitney & Smith, 2014 ). Group sessions incorporated either
one or a combination of the following presentation formats: lectures or seminars, group
discussions, guided practice/role playing, and/or experiential activities. Individual
interactions were either one on one therapy sessions, individual coaching, phone interviews
and instructions, or online intervention activities.
Most intervention activities were conducted at outpatient family clinics in 5 of the 13
studies (Ferraioli & Harris, 2013 ; Gika et al., 2012 ; Kenney, 2010 ; Kowalkowski, 2013 ; Peck,
1998 ). The second most utilised location was the family home or a location of the parents'
choosing in 3 of the 13 studies (Campbell, 2003 ; Feinberg et al., 2014 ; Gika et al., 2012 ).
Other intervention locations included ASD school sites in 2 of the 13 studies (Benn, Akiva,
Arel, & Roeser , 2012 ; Bitsika and Sharpley, 2000 ), an ASD treatment centre in 1 of the 13
studies (Blackledge & Hayes, 2006 ), and convenient community locations in 1 of the 13
studies (Dykens , Fisher, Taylor, Lambert, & Miodrag , 2014 ). LaPlante (2013) and Whitney
and Smith (2014) were the only studies conducted online. Trained professionals were the
primary presenters of intervention content. Rather than utilising professionals, Dykens and
colleagues used peer -mentors, and mothers of children with developmental disabilities, to
lead group workshops. Three interventions were implemented using a self -administ ration
method: Parents completed intervention activities at home using an instructional CD ( Gika et
al., 2012 ) or they received instructions and completed activities online ( LaPlante,
2013 ; Whitney & Smith, 2014 ).

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Nine of the 13 studies mentioned identified , conducted intervention sessions once per
week with the exception of Benn et al. (2012) , who held sessions twice per week. Most
weekly group support interventions lasted six ( Dykens et al., 2 014; Feinberg et al., 2014 ;
Gika et al., 2012 ) to eight weeks ( Bitsika & Sharpley, 2000 ; Ferraioli & Harris, 2013 ;
Kowalkowski, 2013 ; Whitney & Smith, 2014 ). Three studies ran intervention sessions which
ranged from five ( Benn et al., 2012 ; Kenney, 2010 ) to nine weeks ( Peck, 1998 ) in duration.
Blackledge and Hayes (2006) delivered an intensive 2 -day intervention group support, which
lasted seven hours per day. Two interventions focused only on writing tasks and clearly
instructed participants to complete writing tasks over a period of three days for 20 minutes
per day ( Campbell, 2003 ) or participants were asked to complete writing tasks over a period
of seven days for 10 minutes per day ( LaPlante, 2013 ). Although Gika and colleagues (2012)
implemented four coaching sessions over a period of six weeks, participants were also
instructed to practice relaxation techniques for 20 minutes, twice per day, for the ent ire 6 –
week period.
Eight of the 13 reviewed studies used random assignment to place participants into a
variety of treatment groups and control group s. Three types of control groups were
implemented, (a) care as usual, (b) wait -list controls, and (c) active controls. Whereas only
three studies used either a wait -list control or care as usual ( Benn et al., 2012 ; Feinberg et al.,
2014 ; Whitney & Smith, 2014 ), the rem aining studies used a comparison intervention (active
control). For example, Ferraioli and Harris (2013) compared differences between a paren t-
focused intervention, Mindfulness -Based Parent Training (MBPT), and traditional child –
focused training, Skills -Based Parent Training. Kowal kowski (2013) examined differences
between a therapist -led intervention (ACT) and a parent -led support group. Dykens et al.
(2014) compared t he effects of mindfulness training (MBSR) to strategies in positive

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psychology (PAD). Two writing interventions, ( Campbell, 2003 ; LaPlante, 2013 ) compared
writing about an emotionally traumatic topic to writing on neutral topics as the control
condition.
Seven of the 13 studies con ducted follow -up assessments within two to three months after
the completion of the intervention ( Benn et al., 2012 ; Blackledge & Hayes, 2006 ; Campbell,
2003 ; Dykens et al., 2014 ; Feinberg et a l., 2014 ; Ferraioli & Harris, 2013 ; Kowalkowski,
2013 ). Dykens and colleagues (2014) was the only reviewed study that assessed outcomes at
six months (in addition to two months) following the intervention. Six studies used only an
immediate post -assessment ( Bitsika & Sharpley, 2000 ; Gika et al., 2012 ; Kenney, 2010 ;
LaPlante, 2013 ; Peck, 1998 ; Whitney & Smith, 2014 ).
The overall findings from the 13 studies indicated that the treatment conditions
outperformed the control conditions ac ross modalities and across time. Six interventions
produced a medium effect size across most outcome measures post -intervention, suggesting
at least based on a single study in each case, a reasonable likelihood of efficacy ( Benn et al.,
2012 ; Campbell, 2003 ; Dykens et al., 2014 ; Feinberg et al., 2014 ; Ferraioli & Harris,
2013 ; Kowal kowski, 2013 ). Mindfulness Treatments (MT) demonstrated large effects with
parents showing significant improvement in parenting stress ( Ferra ioli & Harris, 2013 ),
general health (including anxiety, insomnia, and depression) ( Ferraioli & Harris, 2013 ), and
parental distress ( Dykens et al., 2014 ). Acceptance and Commitment Therapy (ACT) resulted
in significantly large reductions in depression and parenting stress ( Kowalkowski, 2013 ). MT
also demonstrated follow -up improvements of a medium magnitude ( Benn et al., 2012 ) in
anxiety and stress, and a large magnitude in general health ( Ferraioli & Harris, 2013 ). These
results point to MT as a promising treatment for parents caring for a child with ASD .

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In contrast , treatment outcomes for the positive psychology intervention ( LaPlante, 2013 )
resulted in small effects. Assuming homogeneity of participants randomly assigned into
treatment conditions, the range of treatment outcomes should follow a normal distribution
(Shadish & Haddock, 2009 ). The results presented here suggest such a normative curve
including extremely high and low effect size values. Upon closer inspe ction, however,
treatments with extreme values were vastly different in sample size. At post -intervention, the
mindfulness interventions had a rel atively small sample size with less than 20 participants.
This may have contributed to greater heterogeneity between treatment and control conditions
resulting in larger group differences and larger effect sizes. On the contrary, LaPlante (2013)
had a sample size ten times as large ( n = 212) but with a small treatment effect indicated by
minimal differences between treatment and control group means. The author reported that
within -subje ct variance across time changed in the direction of the study hypothesis.
Specifically, post -intervention participants reported slight reductions in depression and
negative affect and increased feelings of gratitude, life satisfaction, and positive affect.
Only one study assessed treatment effects past two -three -month follow -up. Dykens and
colleagues (2014) reported generally medium effects siz es at six months follow -up for
outcomes due to mindfulness -based stress reduction. Parents reported reductions in anxiety,
depression, insomnia, and parental distress, and an increase in life satisfaction and
psychological well -being. However, these result s were based on only 39% of participants
because of high (61%) attrition, raising concerns about this follow -up sample being biased in
favour of positive outcomes. Therefore, it is yet unknown whether any parent -focused
intervention has lasting positive ef fects. Several interventions, however, appear promising
producing medium to large positive effects that remain two – to three -months after completion:
Stress Management and Relaxation Techniques ( Benn et al., 2012 ), Expressive Writing

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(Campbell, 2003 ), Mindfulness -Based Stress Reduc tion ( Dykens et al., 2014 ), Problem
Solving Education ( Feinberg et al., 2014 ), Mindfulness -Based Parent Training ( Ferraioli &
Harris, 2013 ), and Acceptance and Commitm ent Therapy ( Kowalkowski, 2013 ).
Regardless of treatment modality or intervention procedure, a greater number of treatment
effects were detec ted after longer follow -up time points. In some cases, the time period of
follow -up made the difference between significant and non -significant results. An illustrative
example occurred when examining results for Blackledge and Hayes (2006) and
Kowalkowski (2013) . Both studies test ed A cceptance and Commitment T herapy, which were
implemented in a group led by professionals at a clinic setting. Both studies also assessed
outcomes at post -test and at 3 -months follow -up. From baseline to post -test, results in
parenting stress and psycho logical distress were non -significant for both studies. However,
from baseline to the 3 -month follow -up period, outcomes improved and showed a significant
treatment effect. Additionally, Bitsika and Sharpley (2000) and Peck (1998) only measured
assessments at baseline and post -intervention, immediately following the last intervention
session. Here again, utilizing a short -term follow -up period, both studies were unable to show
significant effects of their tested intervention. Hence, studies that reported significant mental
health re sults assessed outcomes at least two -months post -intervention. Moreover, studies
that assessed outcomes at multiple follow -up points reported a larger magnitude of change at
later assessment points, such as three or six months ( Dykens et al., 2014 ; Feinberg et al.,
2014 ; Ferraioli & Harris, 2013 ; Kowalkowski, 2013 ). Quite possibly, this implies that
transformations in mental health require more time before positive effects become apparent.

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5.3. Methodological limitations of research -based informal and formal support
group models for parents of childr en with ASD .
The studies reviewed in section 5.2 of this chapter presented a promising body of
research on group support for parents of children with ASD. However, that research is also
affected by significant limitations which adversely affect the robustness and the
generalisability of findings and ultimately prevent clear indication about the best ways to
support parents of children with ASD. As mentioned previously, a total of seven randomised
control trials were utilised for the research design as they were considered to be valuable for
testing intervention efficacy (Shadish, Cook, & Campbell, 2002). On average, randomised
control trial studies lost 30 % of participants at post -intervention, compar ed to quasi
experimental design studies which lost on average only 11 % of participants at post –
intervention. For instance, in the study conducted by Kowalkowski (2013), the entire control
group withdrew from the study after three weeks of participation. Pa rents of children with
ASD mentioned that they withdrew from the study as they wished for more guidance from a
professional instead of peer -to-peer support. Dykens and colleagues (2014) used an inactive
control condition by testing a two -arm intervention o f mindfulness versus positive
psychology. At post intervention, only 17% of 243 participants withdrew from the study.
Active comparison conditions could potentially reduce attrition rates in participants when
using randomised control trials.
Of the eight randomised control trail studies, only two reported effect sizes across all
assessment times. For the remaining five studies , effect sizes across assessment times needed
to be calculated. It is expected that as research on interventi ons for parents of chi ldren will
keep rising, future researchers should report effect sizes for all outcomes. Moreover, another
significant limitation from all 13 studies indicated that only self -report instruments were used

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to assessment outcome of interventions for parents of children with ASD. Future research
should consider adding other objective measures such as stress and other physical measures
which can provide correlational comparison with self -report instruments. Observation
measures such as clinical interviews, report s from other sources and observational measures
would allow for researchers to have multi -dimensional assessment of intervention outcomes
and strengthen positive results.
Recruitment methods were used to make sure that participants would be
representative of the general population of parents of children with ASD. On the other hand,
Campbell (2003) obtained a low response rate for the recruitment in his study, as a
consequence a majority of the participants in the study were married Caucasian mothers.
Furth ermore, participants from Kenney (2010) and Kowalkowski (2013) studies were mainly
English -speaking stay -at-home mothers, who had time available to attend research sessions.
Furthermore, participants at baseline seemed to have high baseline levels of stres s, anxiety
and depression. This information indicates that participants experiencing mental health
problems self -selected to participate in interventions to address their psychological needs.
However, Benn and colleagues (2012) mentioned that participants with higher baseline levels
of depression and stress were more likely to withdraw out of interventions and less likely to
complete follow -up measures. Bitsika and Sharpley (2000) and Kowalkowski (2013) noted
limitations in performing certain statistical te sts due to the small sample size of their
participants which were a significant limitation to generalisability.
Caucasian mothers of children with ASD over thirty years old were over represented,
as a consequence generalisability to a more diverse sample of participants was compromised.
For instance, Kenney (2010) explained that results may not apply to fathers of children with
ASD as few participated. Inferences should be made with extreme cautio n when considering

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treatment effects of interventions in a multi -cultural, multi -generational population. Another
significant limitation is the lack of independent replication of any of the interventions that
have shown promising results. Each specific int ervention has been analysed in one single
study. Without replication of promising interventions, the interventions only offer
preliminary support of their effectiveness.
Study 1 aimed to address parents’ needs by taking into consideration limitations
ment ioned in previous research. A numerous amount of previous research findings indicated
that parents of children with ASD benefited and valued group support services (Barnett et al.,
2003; Bitsika & Sharpley, 1999; Mansell & Morris, 2004). Consequently, study 1 consisted
of administering group support sessions for parents that would address different needs they
had at the time of recruitment. A study conducted by Ellis and colleagues (2002) found that
parents’ greatest identified need was for information so they could better understand their
ASD child. As a consequence, four different training groups were created to address different
needs parents may have at the time of recruitment including: 1) Information on ASD; 2)
Information on using Functional Behavio ural Assessment (FBA); 3) Information on how to
implement coping skills and strategies; 4) Information combined on the application of FBA
and coping skills. Participants had the opportunity to select the group they believed would be
more beneficial to them in order to make sure that parents would attend a group that
presented information on an area of need for participants.
Furthermore, the decision was made in the creation of study 1 to conduct follow -up
assessments to measure any long -term changes that wo uld have occurred in participants after
they attended the different training groups. Three different follow -ups were administered to
participants as previous research findings have indicated that treatment effects reported
generally medium effects sizes at six months follow -up (Dykens et al., 2014) . Several

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interventions also appear promising generating medium to large positive effects that rem ain
two- to three -months after the completion of different training support groups ( Benn et al.,
2012 ; Campbell, 2003 ; Feinberg et al., 2014 ; Kowalkowski, 2013 ). The individual
administering the sessions to participants in study 1 was a trained professional. This decision
was made due to Dykens and colleagues (2014) research findings, indicating that participants
withdrew from their control group due to the fact that it was not conducted by a trained
professional.
As previous research findings ran sessions once per week and this format was proven to
be efficient, sessions implemented in study 1 were ran once a week (Bitsika & Sharpley,
2000 ; Campbell, 2003; Feinberg et al., 2014 ; Kowalkowski, 2013 ). Previous research
findings also indicated that most weekly interventions lasted six ( Dykens et al., 2014 ;
Feinberg et al., 2014 ; Gika et al., 2012 ) to eight weeks ( Bitsika & Sharp ley, 2000 ; Ferraioli &
Harris, 2013 ; Kowalkowski, 2013 ; Whitney & Smith, 2014 ). Consequently, the decision was
made to implement weekly interventions that would last e ight weeks. The intervention
sessions ranged from five ( Benn et al., 2012 ; Kenney, 2010 ) to nine weeks ( Peck, 1998 ) in
duration. The intervention sessions in study 1 lasted six weeks , and two further sessions (Pre –
Intervention and Post -Intervention ) consisted of participants completing different measures to
assess any changes in their depression, anxiety, parent -child relationship and in their child’s
use of difficult behaviours across time .

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6. Study 1 : Comparing Three Models for Delivering Group -Based Support to Parents
of Children with ASD
6.1. Study rationale.
Parents of children with ASD are reported to experience greater levels of stress
(Dabrowska & Pisula, 2010), anxiety (Weiss, 2002), and depression (Greenberg et al., 2004)
than parents of children with other developmental disorders or physical impairments (Koegel,
et al., 1992). Factors which contribute to the elevated stress levels of parents of ASD child ren
relate to the unpredictability of their child’s behaviour (Allik et al., 2006; Benson, 2006;
Blacher & McIntyre, 2006 ), their child’s cognitive/learning difficulties (Bebko et al., 1987;
Moes, 1995), the under -development of their child’s communicatio n skills (Bebko et al.,
1987; Moes, 1995), the lack of understanding from the wider community of the nature of
ASD (Farrugia, 2009; Gray, 2002), and the onset of marital difficulties (Hartley et al., 2010;
Pottie et al., 2009). A proliferation of formal su pport groups for parents of children with ASD
has been noted in the research, but these vary greatly in relation to content, delivery methods,
and data -collection on parents’ changes. There is very little information regarding which
parent -focused interventions would be most capable of creating positive mental health
outcomes for parents, with a possible flow on effect to their children with ASD. Specifically,
there have been few investigations into the ways in which resilience might reduce the onset
or intensity of symptoms of depression and anxiety in parents of children with ASD (Lam et
al., 2010; Mandell & Salzer, 2007).
Research into support groups for parents of children with ASD has traditionally focused
on helping paren ts to better manage their children’s behavioural and autism -based
difficulties. There is a paucity of research into the development of targeted interventions
designed to train parents of children with ASD to manage the adverse emotional and

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psychological e xperiences they themselves confront on a day -to-day basis. Gaps and
limitations were noted and discussed in Chapter 4 of the thesis. For example, one main
limitation in the previous literature consisted of the utilisation of randomised control trials for
certain research designs, which resulted in lower attrition rates of participants compared to
studies using quasi experimental designs. Another significant limitation was noted in the
measuremen t of t he outcome s of interventions in several formal support groups. Self -report
instruments were commonly used to asses s the outcome of interventions for parents of
children with ASD, which limited researchers ’ ability to have multi -dimensional asse ssment
of intervention outcomes. This inability to generalise results to a diverse group of parents of
children with ASD is a limitation, with Caucasian stay -at-home mothers over thirty years old
being over -represented in past research. Moreover, studies that ut ilised a short -term follow –
up period were unable to show significant positive effects from their tested intervention on
parents’ mental health well -being. The variation and limitations in this literature prevent clear
conclusions being drawn on what content and delivery format would result in the best parent
support. There is a need for a study which delivers and evaluates, in relation to parent change
in mental health, the content and delivery format of the major group support models from the
literature.
The three most common support group models from t he review conducted in Chapter 5 of
the thesis were selected and will be compared in this thesis . Study 1 aimed to overcome some
of the main limitations observed in the implementation of suppor t groups and in evaluating
the efficiency of such groups. For instance, in depth and multiple pre -test and post-test
measures of changes in mental health/functioning were administered to participants to detect
any immediate changes and to examine the maint enance of any changes over time.
Furthermore, participants were able to make choices about the group they wished to attend
(FBATG or STG) and the time (morning or evening sessions) they wished to attend. This

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recruitment strategy was used in order to reduc e the number of participants withdrawing from
the study, as they were able to select the group that suited their needs at the time and they
were able to select a time that was most convenient for their busy schedules.
Another limitation that study 1 addre ssed was concerned with the lack of variety in
participants’ biographical backgrounds. Study 1 recruited mothers, fathers, and/or caregivers
of children with ASD, and night sessions were offered to participants so parents working full –
time or part -time cou ld attend the groups more easily. Finally, another limitation which study
1 aimed to overcome consisted of participants’ inability or reluctance to give their opinion on
each session and which sessions they found to be most helpful. Parents’ satisfaction with the
FBATG and STG, and parents’ satisfaction with the content of each session , was assessed at
the end of the groups. This process allowed f or the most highly -rated three sessions from
each support group to be combined in to a third support group. The aim was to assess whether
participants’ attending the CG would give similar ratings of satisfaction with the sessions and
the group, as participa nts attending the FBATG and the STG (these four models are discussed
in detail in section 6.2.3.3, pp.104 -108).
Clarification on the issue of what constitutes effective parent -focused support might be
gained via the investigation of two questions. First, is delivery of parent -focused intervention
capable of assisting parents to manage the typical adverse emotional/p sychological
experience s they encounter ? Second, is parent -focused intervention more effective in creating
positive changes in parents’ emotional/psychological states than child -focused approaches?
The present study aimed to investigate these two research questions by examining the effects
of four models for delivering group -based support to parents of children on parent mental
state (i.e., anxiety and depression), parent resilience, and parenting satisfaction.

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6.2. Methods.
6.2.1. Participants.
6.2.1.1. Parent participant features.
Participants for this study consisted of 36 adult biological parents and/or legal guardians
of children with ASD. Of these 36 participants, twenty eight (78%) were mothers, six (17%)
were fathers and two were grand -parents (5%) of children with ASD. They ranged in age
from 30 to 59 years, with a mean age of 45 years ( SD = 6.31). The majority of participants
were married (72%), four participants were single parents (11%), another four participants
were divorced (11%) and two part icipants were in a de f acto partnership (6%). Twenty
participants (55%) had two children, nine parents (25%) had three children, four parents
(11%) had one child, two parents (6%) had nine children, and one parent (3%) had five
children. Thirty parents (83 %) reported having only one child diagnosed with ASD, five
participants (14%) reported having two children diagnosed with ASD and one parent (3%)
reported having five children diagnosed with ASD. Under half of the participants had a
TAFE education level (4 7%), ten participants (28%) had a graduate university degree, six
parents (17%) had high school Year 12 certificate, and three participants (8%) had a
postgraduate university qualification. Of the thirty -six participants, thirteen parents (36%)
were not em ployed, ten parents (28%) were employed part -time, seven parents (19%) were
employed full -time and six parents (17%) were self -employed.
6.2.1.2. Parent participant support features.
Of the 36 participants, 28 parents (78%) reported not having access to g overnment –
funded respite services while 8 parents (22%) repo rted accessing government -funded respite
services. Of the 8 participants who reported accessing government -funded respite services, 4
parents (50%) access ed out of home respite services, 1 parent (12%) reported accessing in

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home respite services and 3 parents (38%) reported accessing both in home and out of home
respite services. For parents who reported not accessing government -funded services (78%),
brief explanations were given by 25 participant s as to why they did not access these types of
services and these reasons are presented in Table 1.
Table 1 :
Brief Reasons Given by Participants as to why they did not Access Government -funded
Respite Services
Participants’ Reasons Frequency
(n = 25 ) Percentage (%)
Difficulty in accessing respite services 7 28
Unaware of respite services being available 5 20
Difficulty trusting others to look after their child 4 16
Child struggles with new people 3 12
Child is High Functioning 2 8
Others need the services more 2 8
Assistance received by family 1 4
Funding was already spent 1 4

Furthermore , 19 parents (43%) mentioned that they received support from family
members and friends, with 17 parents (47%) reporting that they did not receive any support
from family members and friends. Of the 19 parents who reported receiving support from
family memb ers and friends, 7 parents reported receiving support sometimes from family
members and friends and 12 parents reported receiving support most of the time. Only 12

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parents (33%) reported having child care or recreational services available, with Gold Coast
REC and Sports and before/after school care being reported by 50% of parents. For the 24
parents (67%) who did not access child care or recreational services, the following reasons
were given: 1) Unaware of services available (18%); 2) Child does not like it (18%); 3)
Difficulty trusting other people (18%); 4) Services were not needed (14%); 5) Time and
money restrictions (9%); 6) Behavioural/Social difficulties of the child (9%). For the 17
parents (47%) who reported being able to access any other form o f assistance for their child,
8 parents (47%) reported accessing other form of assistance from government agencies and 9
parents (53%) reported accessing other forms of assistance that were privately funded.
6.2.1.3. ASD Child f eatures.
Although the children with ASD were not formal participants in the study , basic
biographical data were collected on them to assist in contextualising the experiences of the
parents in relation to their children’s ages, sex, specific ASD and other diagnoses , and school
type. Participants’ children ranged in age from 6 to 30 years, with a mean age of 11 years ( SD
= 4.43). Participants’ reported that the age of the children at the time when they received a
diagnosis for ASD ranged from 2 to 17 years, with a mean age of 6 years ( SD = 3.48). The
majority of children were males (67%), with only 12 children being femal es (33%).
Participants reported that they had to consult between 1 to 10 professionals before their child
received a diagnosis for ASD, with an average of 3 professionals being consulted before the
child received a formal diagnosis. It took an ave rage of 4 months for the children’s ASD
diagnosis to be confirmed. Participants reported that 21 of the children diagnosed with ASD
attended mainstream school (58%), while the remaining 15 children attended a specialist
school (42%). Of the 21 children with ASD att ending mainstream school, 14 children (67%)
had access to one -to-one support from an integration aide. Children were able to access to

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one-to-one aide support ranged from 1 to 20 hours per week, with an average of five hours
per week of one -to-one aide sup port.
6.2.2. Procedure .
6.2.2.1. Recruitment of participants.
Participants were recruited through the Centre for Autism Spectrum Disorder (CASD)
at Bond University, using the participants’ database. The three inclusion criteria for this study
required participants: to be the biological parent and /or legal guardian of a child with a
confirmed ASD diagnosis, to have major caregiving responsibility for the child, and to be
living in the same residence as that child. An email was sent to all of the parents of children
with ASD on the CASD database, and the Explanatory Statement (ES) for the study was
attached to the email so potential participants had immediate access to a description of the
aims and procedur es for the study (see Appendix B for the ES). Pare nts of children with ASD
could contact the researcher by phone or by email if they wished to participate in the study.
Parents were provided with the opportunity to a select support group option and time
for attending that group so as to increase the chan ces that they attended a group with the
capacity to meet their particular needs . Therefore, parents were given the option of attending
a Functional Behavioural As sessment Training Group (FBATG) or a Skills Training Group
(STG). The parents could choose to attend an ASD Knowledge G roup (ASDKG) , but no ne
chose it , and as a consequence , the group was dropped from the study , leaving the FBATG,
STG, and CG for implementation. Subsequently , three different models for delivering group –
based support to parents of children with ASD were offered instead of four. Table 2 presents
the reasons why 26 parents found the ASDKG to be of minimal relevance to them. Also,
participants could choose the time of day (i.e., morning versus evening support groups) when
they preferre d to attend their nominated group.

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Table 2 :
Participants’ Reasons for not Choosing to A ttend the ASDKG
Parent -Reported Reason Frequency
(n = 26) Percentage (%)
FBATG or the STG would be more
beneficial 16 62
Ability to attend only one group 6 23
Already knowledgeable on ASD 4 15

Participants were informed of two conditions before they selected the group they
wished to attend: 1) a maximum of 15 parents could attend each group and that consequently
they could be denied to attend their preferr ed group if it was already full; 2) they could be
allocated to the Combined Group (CG) even after they had selected the specific group they
wished to attend. Parents were allocated to the CG via a basic numeric system , in which
every fourth participant who contacted the Centre to enrol in one of the support groups was
allocated to the CG. When participants were allocated to the CG, they were in formed that
they would be put on a waitlist until the FBATG and STG were completed. Participants were
sent an email by the researcher, informing them whether they were allocated to the group of
their choice or whether they had been allocated to the CG (see Appendix C for an example of
the email of confirmation sent to participant).
When participants came for the Pre -Intervention session, they were hande d a consent
form (see Appendix D for the consent form). The consent form provided participants with a
formal basis to confirm that they understood the explanation offered in relation to procedures,

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confidentiality, and voluntariness. All signed consent forms were collected and stored under
lock and key for the duration of time specified by the Bond University Human Research
Ethics Committee (BUHREC). In order to assess any changes in participants’ anxiety and
depression levels after they attended the support groups, the facilitator decided to implement
a cut -off point that would allow for the data to be analys ed. Consequently, participants had to
attend a minimum of four sessions out of the six sessions offered in each group for the data
collected to be used to perform analyses.
6.2.3. Setting, research design and assessment.
6.2.3.1. Setting.
All sessions were conducted at Bond University by the student researcher, using the
same meeting room to maintain consistency in the environment in which participants would
take part in the support groups. The meeting room was sound proof and approximately four
by seven meters in size. It contained six large desks around which twenty people could sit in
a square arrangement. A computer was accessible, which was used each week to deliver a
PowerPoint presentation based on a pre -determined topic . Participants were also given a
booklet with the information for each session they attended; they could take notes on the
booklet during each session they attended for their convenience.
6.2.3.2. Research d esign.
The design for study 1 was a pre -post-test plus follow -up design in which the effects
of three intervention groups were compared. This comparison looked at change or effects
from during group delivery (pre -post measures) and for a period of time after the group was
completed (follow -up measures). The present study aimed to evaluate three different content –
models for delivering group -based support to parents of children with ASD. Six different

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phases were implemented to assess potential changes in participants’ mental health well –
being across time and to measur e the effect the three different content -models for delivering
group -based support had on participants’ mental health well -being.
The first phase consisted of the Pre -Intervention assessment. The aim of phase 1 was
to obtain baseline measures on participants’ anxiety, depression, and resilience , the quality of
the relationship with their child, and the presence and frequency of their child’s ASD
behaviours. These baseline measures were an indicator of how partic ipants felt prior to the
commencement of the support group, so these measures could be compared to measures
obtained after the implementation of the support groups. Participants came to Bond
University to complete the survey one week prior to the commencem ent of the support
groups. Participants were greeted by the f acilitator of the support groups and taken in the
room that was used for the remainder of the sessions. Participants were officially welcomed
to the support group and they were given a consent fo rm to sign (see Appendix D), indicating
that they understood the requirements for their participation in study 1 . Participants were
asked to complete a survey and the facilitator was present to answer participants’ questions.
The completion of the survey t ook on average 60 minutes, as partici pants completed the
survey the f acilitator collected the surveys and reminded participants that session 1 will be
conducted next week at the same location, time and on the same day .
Phase 2 comprised sessions 1 to 6. A t the conclusion of each session participants were
asked to evaluate the session they had just finished . Participants expressed how valuable they
found each session in relation to topic practice strategies, and they shared which particular
aspect of the se ssion was valuable to them and why. The aim of phase 2 was to identify the
top three sessions of six, scored as the most valuable sessions by participants attending the
FBATG and the STG. The top three sessions scored by participants for each support group

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were going to be implemented in the CG. Therefore, at the conclusion of each session
participants were handed a “participant evaluation” form to complete. The completion of the
form took approximately 5 to 10 minutes and participants’ answers remained de -identified for
confidentiality purposes . An example of a “participant evaluation” can be found in Appe ndix
E.
The Post -intervention assessment was referred to as phase 3. The aim of phase 3 was
to obtain measures on participants’ anxiety, depression, and resilience, the quality of the
relationship with their child, and the presence and frequency of their child’s ASD behaviours
after they completed the support group. A process was designed to assess the presence of
effects Pre -Intervention and Post -Interven tion for parents of children with ASD, which
consisted of conducting paired -samples t -test to evaluate the impact of the FBATG, the STG,
and the CG on participants’ levels of anxiety (via GAD7 total score) and depression (via
PHQ9 total score). The same t -tests comparisons were used across all variables. Participants
completed the survey in the presence of the facilitator, in case they needed any assistance,
and it took approximately 60 minutes for participants to complete the survey. Participants
were also given a questionnaire to complete, aiming to identify their satisfaction with the
support group they attended. Participants were able to mention what they found to be helpful
in the group they attended, what they were satisfied with, and they had the oppo rtunity to
mention what they were not satisfied with. This questionnaire was administered so the
facilitator could identify which areas of the support groups were efficient and which areas
might require any modifications for future implementations of the s upport groups.
Participants took on average 5 to 10 minutes to complete this questionnaire. At the end of
phase 3 participants were reminded that they were going to receive “SurveyMonkey” links on

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three different occasions to complete the survey they had a lready completed in phase 1 and in
phase 3.
Phases 4 (Follow -Up 1), 5(Follow -Up 2), and 6 (Follow -Up 3) consisted of the online
administration of the survey that participants had completed in phase s 1 and 3. The survey
was made available through “SurveyMonkey”. The aim of phases 4, 5, and 6 was to assess
the maintenance of effects (post -follow -ups) for parents of children with ASD, conducting
paired -samples t -test to evaluate the impact of the FBATG, the STG, and the CG on
participants’ levels of anxiety (via GAD7 total score) and depression (via PHQ9 total score).
Participants were sent an email each week they had to complete the online survey, and they
were given instructions on how to complete the survey. Participants were provided with the
contact details of the facilitator in case they required some assistance to complete the online
survey. Participants were sent the Follow -Up assessment 1 (phase 4) at four weeks post –
group implementation, the Fol low-Up assessment 2 (phase 5) at eight weeks post -group
implementation, and the Follow -Up assessment 3 (phase 6) at twelve weeks post -group
implementation. An example of the email sent to partic ipants can be seen in Appendix F .
Furthermore, the measures gi ven to participants at different phases of study 1 have been
presented in Table 3.

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Table 3 :
Administration of Measures for Participants to Complete at D ifferent Phases of the Support
Groups
Measures Phase 1 Phase 2 Phase 3 Phase 4 Phase 5 Phase 6
Survey
Sessions Evaluation
Satisfaction with Overall
Support Group

6.2.3.3. Description of the three sup port groups delivered in study .
Even though four groups were created for the purpose of study, only three groups
were used with participants. The ASDKG was dropped due to poor uptake from parents and
as a consequence this group will not be described. Information as to why participants were
not interested in attending the ASDKG has been listed in Table 2. The FBATG, STG and CG
will be described in the subsequent sections of the thesis, placing an emphasis on describing
the general focus of each group, presenting the headings of sessions, and describing the
concepts/ideas taught in each session. As explained in the previous sect ion on the recruitment
of participants, parents attended either the support group of their selection or they were
allocated to the CG. Information on participants such as the number of participants who
attended each group, their sex ra tio and participants’ age group, has been presented in Table 4.

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Table 4 :
Sex R atio and Age R ange of Participants who A ttended the Three Groups
Name of Groups Number of
Participants (N = 36) Sex Ratio Age Range (years)
FBATG 11 Fathers = 1
Mothers = 10 34 – 51
STG 12 Fathers = 3
Mothers = 9 30 – 58
CG 13 Fathers = 3
Mothers = 10 35 – 59

The focus of the FBATG was to familiarise parents with a framework, called
Functional Behaviour Assessment (FBA), which they could use to understand the reasons for
their child’s behaviour and work towards changing it. Therefore, discussions on different
ways of understanding why their child used particular behaviours and practicing some
management strategies they could use at home were raised throughout the sessions . The aim
of th e FBATG was to help parents become systematic observers and problem -solvers in
relation to their child’s behaviour. The specific headings for each session conducted in the
FBATG have been listed in Table 5. Furthermore, the concepts/ideas for each session taught
in the FBATG h ave been presented in Appendix G .

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Table 5 :
Topics Addressed in Each Session of the FBATG
Sessions List of Topics
1 Core features of ASD and its impact on child functioning .
2 Learning how to define child’s problematic behaviours .
3 Identifying the antecedents for child’s difficult behaviours .
4 Identifying the valued outcomes of child’s difficult behaviours .
5 Discussing parental ability to understand, cope, and even prevent their
child from engaging in difficult behaviours .
6 Reviewing the FBATG programme and its effect on parents’
understanding of their child’s problematic behaviours .

The focus of the STG was to familiarise parents with three components which are
acceptance, optimism and self -efficacy. The goal of the STG was be to increase parents’
resilience (ability to cope/deal with challenging events that might arise in their daily lives,
without being negatively affected psychologically ( i.e., depression and/ or anxiety). The focus
was on parents’ positive emotional experiences, the active coping strategies that they
implemented, increasing their self -confidence, identifying their beliefs and the type of social
support they accessed, and identifying the goals t hat they set for themselves and their child.
The specific headings for each session conducted in the STG have been listed in Table 6.
Furthermore, the concepts/ideas for each session taught in the STG have been presented in
Appendix H.

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Table 6 :
Topics Addressed in Each Session of the STG
Sessions List of Topics
1 Identifying social/professional support received by parents of children
with ASD .
2 Identifying and discussing beliefs that parents find helpful in accepting
their child’s impairment .
3 Identifying and discussing the positive emotional experiences in
parents’ life .
4 Introducing parents to coping strategies used by other parents of
children with ASD to remain optimistic .
5 Identifying active coping strategies that assist parents in hand ling
difficult situations related to their child’s ASD .
6 Reviewing the STG programme and assessing parents’ self -confidence .

The focus of the CG was to introduce parents to the sessions that parents attending the
FBATG and parents attending the STG found to be most valuable . Parents in the CG received
a combination of information and practice in applying basic principles of FBA to current
child behaviours, as well as skills training and access to strategies relevant in day -to-day life.
The three sess ions from the FBATG that were scored as being the most valuable sessions by
participants were administered to parents attending the CG. Similarly, the three sessions from
the STG that were scored as being the most valuable sessions by participants were
administered to p arents attending the CG. The specific headings for each session conducted
in the CG have been listed in Table 7. Furthermore, the concepts/ideas for each session taught
in the STG have been presented in Appendix I.
Table 7 :

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Topics Addressed i n Each Session of the CG
Sessions List of Topics
1 Identifying and discussing beliefs that parents find helpful in
accepting their child’s impairment .
2 Introducing parents to coping strategies used by other parents of
children with ASD to remain optimistic .
3 Identifying active coping strategies that assist parents in handling
difficult situations related to their child’s ASD .
4 Learning how to define child’s problematic behaviours .
5 Identifying the valued outcomes of child’s difficult behaviours .
6 Discussing parental ability to understand, cope, and even prevent
their child from engaging in difficult behaviours .

6.2.3.4. Pre-and-Post support group self -report scales used to measure parent and
child changes .
The effects of support group attendance were measured in relation to mental health
(i.e., the Patient Health Questionnaire – 9 questions (PHQ -9) scale (Spitzer, Williams &
Kroenke, 1999); and the Generalised Anxiety Disorder – 7 questions (GAD -7) scale (Spitzer,
Kroenke, Williams, & Löwe , 2006), which were administered at Pre -Intervention, Post –
Intervention, and Follow -Up 1, 2, and 3), and in relation to the quality of parent -child
relationship (i.e., the Parent -Child Relationship Inventory (P -CRI) (Gerard, 1994), which was
adminis tered at Pre -Intervention, Post -Intervention, and Follow -Up 1, 2, and 3). The effects
of support group attendance were also measured in relation to resilience (i.e., the Connor –
Davidson Resilience Scale (CD -RISC) (Connor & Davidson, 2003), which was admini stered

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at Pre -Intervention, Post -Intervention, and Follow -Up 1, 2, and 3), and in relation to child’s
ASD behaviours (i.e., the ASD Behaviour Checklist, which was administered at Pre –
Intervention, Post -Intervention, and Follow -Up 1, 2, and 3). In addition to these four self –
report scales, participants were required to complete the Parent Profile Questionnaire (PPQ)
(Bitsika & Shapley, 2004), which was administered at Pre -Intervention. Furthermore,
participants were asked to complete a questionnaire on thei r overall satisfaction with the
support group they attended, which was administered at Post -Intervention. Table 8 gives an
indication of the surve ys and weeks of administration.
Table 8 :
Lists of Scales used in Surveys in Relation to M easure ment Point and Week Administered
Phase/Measurement Point Scales in Survey Week Scales
Administered
Pre-Intervention PPQ, PHQ -9, GAD -7, P-CRI,
CD-RISC, and ASD Behaviour
Checklist . Week 0
Post-Intervention PHQ -9, GAD -7, P-CRI, CD –
RISC, ASD Behaviour
Checklist, and Satisfaction
Questionnaire . Week 7
Follow -Up 1, 2, and 3 PHQ -9, GAD -7, P-CRI, CD –
RISC, and ASD Behaviour
Checklist . Weeks 12, 16, and 20

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6.2.3.4.1. The Patient Health Questionnaire – 9 (PHQ -9).
The PHQ -9 (Spitzer, Williams & Kroenke, 1999) is a self-report depression screening
instrument based on the nine symptoms of the DSM –IV (Criterion A) for major depressive
episode (MDE) , which have not changed for the DSM -5. Those nine symptoms are depressed
mood, anhedonia, appetite change, sleep disturban ce, psychomotor agitation or retardation,
loss of energy, feelings of worthlessness or guilt, diminished concentration, and suicidal
thoughts or attempts. MDE is suggested if, of the 9 items, 5 or more are circled as at least
“More than half the days”, or if either the item on depressed mood or the item on anhedonia
are circled as at least “More than half the days”. The PHQ9 (Spitzer et al. , 1999) was used to
measure any presence of depression and pattern of depressive symptoms, which scores each
of the 9 items in relation to the DSM -IV criteria for depression using a four -point Likert scale
(0 = not at all, 1 = several days, 2 = more than half the days, and 3 = nearly every day) . The
PHQ -9 has a functional impairment item which asks participants to specify how depression
affects their aptitude to ‘do your work, take care of things at home, or get along with other
people’ (Kroenke et al., 2001). As a severity measure, the PHQ -9 scores can range from 0 to
27, since each of the 9 items can be scored from 0 (no t at all) to 3 (nearly every day). PHQ -9
scores from 5 to 9 indicated mild levels of depression, scores from 10 to 14 indicated
moderate levels of depression, scores from 15 to 19 indicated moderately severe levels of
depression and scores of 20 and above indicated severe depression. This measure was
designed for use in clinical settings and it has become a widely -used tool in health and
rehabilitation research (Spitzer et al., 1999) .
The PHQ -9 cut -off points to diagnose someone with m ajor depression include if 5 or
more of the 9 depressive symptom criteria have been present at least “more than half the days”
in the past 2 weeks, and 1 of the symptoms is depressed mood or anhedonia. Other depression

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is diagnosed if 2, 3, or 4 depressive symptoms have b een present at least “more than half the
days” in the past 2 weeks, and 1 of the symptoms is depressed mood or anhedonia (Kroenke,
Spitzer & Williams, 2001). The original validation studies conducted in the United States by
Spitzer and colleagues (1999; Spitzer, Williams, Kroenke, Horn yak, & McMurray, 2000)
were of 3,000 patients from primary medical care clinics and 3,000 patients from obstetrics –
gynecology care clinics. These reports suggest ed that the PHQ -9 has good internal
consistency producing Cronbac h's alpha of .86 and .89. Additionally, test –retest reliability
had a high correlation at r = .84 and discriminant validity was established via a ROC analysis
that produced an area under the curve for the PHQ9 of .95 when diagnosing depression
(Kroenke et al., 2001 ). Moreover, criterion validity was demonstrated by both high sensitivity
and specificity for the PHQ9. In addit ion, among the 6000 participants who completed the
PHQ9, 580 were interviewed by mental health professionals, and results demonstrated strong
agreement between diagnoses made by the PHQ9 and by the mental health professionals
(Kroenke et al., 2001 ).
The PHQ -9 is an excellent tool for obtaining information about depression rates
among individuals who typically present their concerns a bout depressive symptoms in
primary care settings (Probst et al. , 2006 ). According to Lö we, Schenkel, Carney -Doebbeli ng,
and Gö bel (2006) the PHQ -9 is equally valid in men and women. Lin and colleagues (2014)
found that patterns in the total PHQ -9 score br oadly reflected parents of children with
Intellectual Disability (ID) accounts of the severity of their depression over time. Researchers
have used the PHQ -9 to measure depression in parents of children with disabilities,
describing this scale as suitable for use in screening for depression among parents of children
with severe disabilities and to screen for depression in parents of children of children with
ASD (Bitsika & Sharpley, 2016; Blucker, Elliott, Warren, & Warren, 2011 ; Gatzoyia, et al.,

112

2014; Resch, Elliott & Benz, 2012 ). The PHQ -9 was used to detect depression in parents in
studies 1 and 2.
6.2.3.4.2. The Generalised Anxiety Disorder – 7 (GAD -7).
The GAD -7 (Spitzer et al., 2006) is a self -report measure to detect the presence and
severity of Generalised Anxiety Disorder (GAD) as defined in the DSM -IV-TR and the
DSM -5. The 2 core criteria (A and B) of the DSM -IV definition of GAD are captured by the
first 3 items of the scale. Participants have to answer seven different questions related to
anxiety, indicating how they have felt over the past two weeks. P articipants responses are
presented on a four -point Likert scale (0 = n ot at all , 1 = several days, 2 = more than half the
days, and 3 = nearly every day ). The sums of the scores f or all seven items are added, with a
total score ranging from 0 to 21. Some cut -off points have been introduced to identify the
severity of anxiety experienced by individuals, with scores of 5 to 9 indicating mild levels of
anxiety, scores of 10 to 14 indi cating moderate levels of anxiety and scores of 15 and above
indicating severe anxiety levels. A GAD -7 cut point of 15 or greater maximis es specificity and
approximates prevalence (9%) more in line with current epidemiologic estimates of GAD
prevalence in primary care. However, sensitivity at this high cut point is low (48%). Most
patients (89%) with GAD had GAD -7 scores of 10 or greater, whereas most patients (82%)
without GAD had scores less than 10.
A criterion -standard study of the GAD -7 was conducted, in which 965 patients
completed the GAD -7 and were also evaluated by a mental health professional. The GAD
self-report scale diagnosis and the independent diagnoses made by the mental health
professionals were compared and it showed that the GAD -7 had goo d reliability, criterion,
construct, fact orial, and procedural validity, thus m aking the GAD -7 a valid and efficient tool
for screening fo r generalized anxiety disorders in a clinical practice setting . According to

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Spitzer and colleagues (2006) the interna l consistency of the GAD -7 was excellent (Cronbach
=.92). Test -retest reliability was also good (intraclass correlation=0.83). Comparison of
scores resulting from the self -report scales with those resulting from the MHP -administered
versions of the same sc ales generated similar results (intraclass correlation=0.83), showing
respectable procedural validity. The GAD -7 has been validated as a diagnostic tool and as a
severity assessment tool, with a score of 10 or more having good diagnostic sensitivity and
specificity. Higher scores on the GAD -7 correlate with more functional impairments
experienced by individuals. The scale was developed and validated based on the DSM -IV
criteria and it remains clinically useful af ter the publication of the DSM -5 due to the f act that
differences in GAD diagnostic criteria are minimal (Locke, Kirst & Shultz, 2015).
The GAD -7 has been used to assess the effectiveness of treatment outcomes,
measuring anxiety of participants prior to interventio n and after intervention (Titov et al.,
2009) and to assess the anxiety of mothers during and after their pregnancies (Simpson,
Glazer, Michalski, Steiner, & Frey, 2014 ), and to assess the anxiety of adults seeking health
services ( Spitzer et al. , 2006; Vasiliadis, Chudzinski, Gontijo -Guerra, & Préville, 2015 ) and
to assess anxiety in individuals who met the diagnostic criteria, using the DSM -IV (Dear et
al., 2011; Ruiz et al., 2011 ). As the GAD -7 has been described as a self -administered, easy to
use and not time consuming sca le (Ruiz et al., 2011), this instrument was selected to assess
anxiety in parents of children with ASD in studies 1 and 2.
6.2.3.4.3. The Parent -Child Relationship Inventory (P -CRI).
The P -CRI (Gerard, 1994) is a self -report inventory that highlights how parents
perceive the task of parenting and how they feel about their children. The P -CRI consists of
78 items such as “I talk with and listen to my child”, “Parents should monitor thei r child’s
friendships”, and “Having children was the right decision for me”. The inventory assesses

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parents’ views on parenting and aspects of the parent –child relationship. The P -CRI focuses
on seven distinct sections, as follows: 1) Parental support; 2) Satisfaction with parenting; 3)
Involvement; 4) Communication; 5) Limit setting; 6) Autonomy; 7) Role orientation. Parents
are asked to rate their responses using a four -point Likert scale (1 = strongly agree, 2 = agree,
3 = disagree, 4 = strongly disagree ). Items are arranged in scales that are a reflection of the
relationship between the parent and the child. High scores when rating the P -CRI are an
indication of good parenting skills and low scores are an indication of poor parenting skills.
Two validity indicators are used with the P -CRI, referred to as Social Desirability (SOC) and
Inconsistency (INC). A low SOC suggests that parents are giving distorted responses that
present their parent -child relationship in a positive light when it is probably not t he case.
High scores on the INC suggest that parents were inattentive when responding to the
inventory and were potentially giving random responses.
The P-CRI was standardized on over 1,100 parents across the United States.
Reliability, as determined by internal consistency, had a median alpha of 0.82, and the mean
test–retest correlations were 0.81. P -CRI raw scores are converted to T scores, normalized
standard scores with a mean of 50 and a standard deviation of 10. A T score which is more
than one sta ndard deviation below the mean ( i.e., less than 40) suggests problems in the
domain the scale reflects and very low T scores ( i.e., below 30) indicate the possibility of
very serious problems (Gerard, 1994). Coffman, Guerin, and Gottfried (2006) reported
acceptable internal consistency for P -CRI subscales and also suggested strong temporal
reliability and construct validity. Gerard (1994) reported alphas (Cronbach’s alpha coefficient)
for the seven scales ranging from .71 (SUP) to .87 (LIM). Test -retest rel iability after 1 week
ranges from .68 (COM) to .93 (LIM) and after 5 months from .44 (AUT) to .71 (SUP and
ROL). According to Coffman and colleagues (2006) acceptable internal consistency for most

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scales and moderate to high 1 -year stability for all scales and parents' P-CRI scores correlated
with their views of family climate.
In a sample of 249 adoptive families of special needs children, Satisfaction with
Parenting, assessed using the P-CRI, was significantly correlated with child behavio ur
problems (Behavior Problem Index), but the correlation was of a small magnitude (r= -.19).
The internal consistency of the scale reported in this sample was .70 (Reilly & Platz, 2003) .
The P-CRI has been used i n previous studies of parent -child relationship in autism (Beurkens ,
Hobson, & Hobson , 2013; Karst, 2009; Osborne , McHugh, Saunders, & Reed, 2008), and
was used in the current study as a standardised measure to assess the quality of the
relationship between parent and child.
6.2.3.4.4. The ASD Behaviour Checklist (ASDBC) .
The ASDBC (Bitsika, 2000) is used to identify the presence of a wide range of
autism -based symptoms during diagnostic assessment and uses a “present” (1) vs “absent” (0)
score for each participant's behavioural repertoire. The ASDBC consists of three sections of 8
items each which adhe re to the three major areas of C ommunication, Social Interaction and
Adaptive Behaviour impairment specified in the DSM -IV-TR (APA, 1994/2000) for Autistic
Disorder and Asperger Disorder and retained within the DSM -5 definition of ASD (APA,
2013 ). Criterion validity has been established for the ASDBC with the Childhood Autism
Rating Scale (Schopler, Reichler & Renner, 1999) (r = .71, p < .01) and the Adaptive
Behaviour Composite scores from the Vineland Adaptive Behaviour Scale (Sparrow, Balla,
& Cicchetti, 1984) (r = .60, p < .01), and reliability has been assessed via Cronbach's Alpha
(.77) (Bitsika, Sharpley, & Orape leng, 2008) which is satisfactory for research purposes
(Anastasi, 1982) .

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The ASD Behaviour Checklist consists of 30 items used to rate the behaviour of an
ASD child on three behavioural domains (communication, social interaction and behaviour).
This check list can be completed by parents and caregivers via direct observation of the ASD
child in the natural environment and during an interview with a caregiver(s). Each behaviour
is rated in relation to whether it is present ( Yes) or absent ( No) from the child ’s repertoire and,
in cases where a “ Yes” rating is earned, the frequency with which the behaviour occurs per
week is noted using the four -point scale below. Ratings for the frequency of each of the
behaviours on a weekly basis are given through the use of the following four -point Likert
scale (0 = never, 1 = rarely, 2 = sometimes, 3 = most of the time) for the way that the
individual under evaluation behaves during a typical week.
Some examples of the child’s responses for the communication domain are: 1) No or
minimal speech; 2) Physical strategies used instead of speech; 3) Atypical or odd use of
spoken language and 4) Limited speech functions. Some examples of the child’s responses
for the social interaction model domain are: 1) Limited understanding of facial
expressions/gestures; 2) Misinterpretation of others reactions; 3) Minimal social or emotional
reciprocity and 4) Limited capacity to work in a group. Some examples of the child’s
responses for the behaviour domain are: 1) Obsessive and narrow patt erns of interests; 2)
Intense reactions to stressors; 3) Difficulty making transitions; and 4) inflexible adherence to
non-functional routines. Each time parents identified an item as being present in their child’s
behavioural repertoire they were not only asked to score the frequency of the behaviour but
they were also asked to give a few examples. The ASDBC has been used in previous research
to identify the presence of a wide range of autism -based symptoms during diagnostic
assessment (Bitsika, Sharpley, Andronicos, & Agnew, 2016 ; Bitsika, et al., 2008 ), therefore it
was used in studies 1 and 2 to assess parents’ reports of their child autism -based symptoms.

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6.2.3.4.5. The Connor -Davidson Resilience Scale (CD -RISC).
The CD -RISC (Connor & Davidson , 2003) was utilised to assess participants’
resilience. The CD -RISC consists of 25 items such as “I am able to adapt to change”, “Things
happen for a reason”, “I know where to turn for help” and “I have pride in my achievements”.
Participants were asked to score all 25 items, using a five -point Likert scale ranging from 0
“Not true at all” to 4 “True nearly all of the time”. Participants ’ responses are scored on a
maximum of 4 points per responses, as follows: not true at all (= 0), rarely true (= 1),
somet imes true (= 2), often true (= 3), and true nearly all of the time (= 4). The scale is rated
based on how participants have felt over the past month. The total score ranges from 0 to 100,
with higher scores reflecting greater resilience.
The CD -RISC focus es on five different features: 1) Personal competence, high
standards and tenacity; 2) Trust in one’s instincts, tolerance of negative affect, strengthening
effects of stress; 3) Positive acceptance of change and secure relationships with others; 4)
Contro l; 5) Spiritual influences. Total scores on the CD -RISC are negatively correlated ( -.76)
with total scores on the Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983) and
significantly correlated (.83) with total scores on the Kobasa Hardiness Meas ure (Kobasa ,
1979), demonstrating high concurrent validity. According to Connor and Davidson (2003) the
CD-RISC has adequate reliability, ranging from 0.89 (Cronbach’s alpha) to 0.87 (test -retest
reliability).
The scale was administered to subjects in the following groups: community sample,
primary care outpatients, general psychiatric outpatients, clinical trial of generalized anxiety
disorder, and two clinical trials of PTSD. Sensitivity to treatment effects was examined in
subjects from the PTSD clinical trials. The scale demonstrated good psychometric properties
and factor analysis yielded five factors. A repeated measures ANOVA showed that an

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increase in CD -RISC score was associated with greater improvement during treatment. The
CD- RISC has sound psych ometric properties and distinguishes between those with greater
and lesser resilience. The scale demonstrates that resilience is modifiable and can improve
with treatment, with greater improvement corresponding to higher levels of global
improvement . The s cale exhibits validity relative to other measures of stress and hardiness,
and reflects different levels of resilience in populations that a re thought to be differentiated;
by their degree of resilience ( i.e., general population vs. patients with anxiety d isorders).
The CD -RISC has been used to assess the resilience of parents of children with ASD,
with the aim of assisting parents to develop psychological resilience in dealing with the stress
associated with parenting children with ASD (Bitsika et al. , 2013 ). The CD -RISC was
selected for studies 1 and 2 due to the fact that previous research assessing parents of children
with ASD resilience described the scale as being reliable. Furthermore, Connor and Davidson
(2003) mentioned that t he CD -RISC could be applied in clinical practice with resiliency
interventions. The scale could aid in identifying resilient characteristics but also to assess
participants’ response to the intervention.
6.2.3.4.6. The Parent Profile Questionnaire (PPQ).
The PPQ consist s of a 15-item inventory developed for study 1 , to identify child –
based features (i.e., diagnosis, impairments, and services) and the parents’ responses to these.
This questionnaire was only administered to participants at Pre -Intervention. To begin,
demographical information was collected on the child, such as the child’s age and gender.
Then participants were asked questions on the diagnostic process, such as the age of the child
when he/she was diagnosed with ASD, the number of professionals that has to be consulted
before the child was diagnosed with ASD and how long it took for the diagno sis to be
confirmed.

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The following section of the questionnaire gathered information on the child’s
siblings. Participants were asked if the child had any siblings. If the child had a sibling,
parents were asked whether the sibling had also been diagnosed with a disorder. If the
sibling(s) had received a diagnosis for a disorder , parents were then asked to name the
disorder the sibling(s) had received and birth order of the sibling(s) compared to their ASD
child. Afterwards, parents were asked some questio ns on the school environment of their
ASD child. Parents were asked if their child attended a mainstream or a specialist school.
Then, parents were asked if their child had access to an integration aide. I f so, they were
asked to list the number of hour s their child accessed this aide on a weekly basis.
Finally, parents were asked questions about the types of government -funded respite
services, in -home and/or out -of-home services that they were able to access. Parents were
also asked to describe the type of assistance they received for their child and they were asked
whether they received support from family members or friends to assist them with their ASD
child. The questionnaire ended with parents being asked to describe a major difficulty they
were experi encing with their child at the moment and having parents describe their major
concerns for their child’s future.
6.3. Participants’ attrition and attendance patterns a cross the three support
groups.
Despite self -selecting in relation to specific group and attendance time, overall
attendance was inconsistent across all three groups. Furthermore, some participants dropped
out from the groups at different stages. Specific findings on participants’ incons istent
attendance and on participants dropping out from the study are presented in the following
sub-sections.

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Participants’ attendance across the FBATG and the CG was less consistent than
participants’ attendance in the STG. Of the 16 participants enrolle d in the FABTG, 5
participants (31%) missed one session out of the six sessions and 5 (31%) more participants
missed two sessions out of the six sessions offered, meaning that 63% of participants missed
at least one session of the FBATG while 37% attended all six sessions (Refer to Appendix J,
Table J 1). Of the 16 participants enrolled in the STG, 4 participants (25%) missed one
session out of the six sessions and 3 (19%) more participants missed two sessions out of the
six sessions offered, meaning that 44 % of participants missed at le ast one session of the STG
while 56% attended all six sessions . Participants attending the STG missed less sessions
compared to participants attending the FABTG and the CG (Refer to Appendix J, Table J 2).
Participants attending the CG missed more sessions than participants attending the
FBATG and participants attending the STG. Of the 16 participants enrolled in the STG, 2
participants (13%) missed one session of the six sessions and 10 (63%) more participants
missed tw o sessions out of the six sessions offered, meaning that 75% of participants missed
at least one session of the CG while 25% attended all six sessions (Refer to Appendix J,
Table J 3). Detailed information on participants’ attendance patterns has been prese nted in
Appendix J for all three groups.
Four participants (25%) dropped out in the FBATG. Of these 4 participants, 2
participants dropped out of the training group after missing three sessions out of six and the
remaining 2 participants never showed up to the training group even though they had en rolled
in the group (See Appendix J, Table J1). The number of drop outs for the FBATG was
similar to the number of drop out s for the ST G. Of 16 participants, 1 participant dropped out
of the training group after missing four sessions out of six. Another participant dropped out of
the training group after missing five sessions out of six, and the remaining 2 participants

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never showed up to the training group even though they had enrolled in the group (See
Appendix J, Table J2). Overall , 4 participants (25%) out of 16 dropped out of the STG. The
number of drop outs of participants attending the CG slightly decreased co mpared to the
number of drop out s of participants attending the FBATG and the STG. Of 16 participants, 1
participant dropped out of the training group after missing three sessions out of six, and the
remaining 2 participants never showed up to the training group even though they had enrolled
in the group (See Appendix J, Table J3). Overall 3 participants (19%) out of 16 dropped out
of the CG.
6.4 Findings on the three support group effects.
6.4.1. Data analysis plan.
This chapter investigated the impact that the FBATG, the STG, and the CG had on
participants’ anxiety and depression levels , parents’ ratings of the quality of their relationship
with their child, parent s’ frequency report s of ASD behaviour in their child, and parents’
resilience . As outlined in Chapter 5 of this thesis, there are very few studies that have
investigated the presence and maintenance of effects of content -models for parent support.
Therefore, the process designed to assess the presence of effects (pre -post) and maint enance
of effects (post -follow -ups) for parents of children with ASD consisted of conducting paired –
samples t -test to evaluate the impact of the FBATG, the STG, and the CG on participants’
levels of anxiety (via GAD7 total score) and depression (via PHQ9 t otal score) at these four
time points: 1) Pre -Intervention (week – 1) versus Post -Intervention (week 7) total GAD -7
score and total PHQ -9 score; 2) Comparing participants’ scores on the GAD -7 scale and on
the PHQ -9 scale at Post -Intervention (Week 7) and a t FU1 (Week 12); 3) Comparing
participants’ scores on the GAD -7 scale and on the PHQ -9 scale at Post -Intervention and at

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FU2 (Week 16); 4) Comparing participants’ scores on the GAD -7 scale and on the PHQ -9
scale at Pre -Intervention and at FU3 (Week 20).
Furthermore, as outlined in Chapter 5 of this thesis, very few studies have
investigated the value that participants attributed to not only the topics addressed in different
models of parent support groups but also each topic being addressed in different sessions.
Participants rated how valuable they found each session and the four topics of each the
session to be, on a scale from 1 to 7. A value of 1 out of 7 meant that participants considered
the session and/or topic to be “Not valuable”, and a value of 7 out 7 meant that participants
considered the session and/or topic to be “Very valuable”. Detailed information is presented
on participants’ satisfaction with each session of the FBATG, the STG, and the CG. Also,
results on participants’ satisfaction with the topics addressed in the FBATG, the STG, and the
CG have been present ed and participants’ attendance throughout each group has been
investigated. A comparison was conducted between the three most valuable sessions from
the FBATG that were conducted in the CG and the three most valuable sessions from the
STG that were also conducted in the CG, to identify whether participants rated similarly the
value of sessions and the value of topics that were addressed in sessions that they shared.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three different interventions (FBATG, STG, and CG) on participants’ scores on the
ASD Behaviour Checklist, in which parents reported on their ASD -related children’s
behaviours at fou r different times (Pre -Intervention to Post -Intervention, Post -Intervention to
FU1, Post -Intervention to FU2, and Post -Intervention to FU3). A mixed between -within
subjects analysis of variance was conducted to assess the impact of three different
interven tions (FBATG, STG, and CG) on participants’ scores on the P -CRI scale, in which
parents reported on the quality of their relationship with their ASD children at four different

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times (Pre -Intervention to Post -Intervention, Post -Intervention to FU1, Post -Intervention to
FU2, and Post -Intervention to FU3). In addition, a mixed between -within subjects analysis of
variance was conducted to assess the impact of three different interventions (FBATG, STG,
and CG) on participants’ scores on the GAD -7, in which paren ts evaluate their anxiety level
at four different times (Pre -Intervention to Post -Intervention, Post -Intervention to FU1, Post –
Intervention to FU2, and Post -Intervention to FU3). A mixed between -within subjects
analysis of variance was conducted to assess the impact of three different interventions
(FBATG, STG, and CG) on participants’ scores on the PHQ -9, in which parents evaluate
their depression level at four different times (Pre -Intervention to Post -Intervention, Post –
Intervention to FU1, Post -Intervent ion to FU2, and Post -Intervention to FU3).
6.4.2. Pre -and-Post Intervention measures of parent anxiety across the three
support groups.
6.4.2.1. Functional Behavioural Assessment Training Group .
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Pre -Intervention ( M = 7.18, SD = 4.70)
to Post -Intervention ( M = 6.36, SD = 3.80), t (10) = .9 38, p = .370 (two tailed). The mean
decrease in GAD -7 scores was .81 with a 95% confidence interval ranging from -1.12 to 2.76.
The eta squared statistic (.079) indicated a moderate effect size. Although there was some
positive effect (i.e., decrease in gr oup GAD -7 score) for the FBATG, this was not statistically
significant .

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6.4.2.2. Skills Training Group .
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Pre -Intervention ( M = 6.50, SD = 5.80)
to Post -Intervention ( M = 4.75, SD = 3.67), t (11) = 1.775, p = .103 (two tailed). The mean
decrease in GAD -7 scores was 1.75 with a 95% confidence interval ranging from -.41 to 3.91.
The eta squared statistic (.222) indicated a large effect size. Although there was some positive
effect (i.e., decrease in group GAD -7 score) for the STG, this was not statistically significant.
6.4.2.3. Combined Group .
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Pre -Intervention ( M = 8.92, SD = 5.17)
to Post -Intervention ( M = 7.07, SD = 4.49), t (12) = 1.442, p = .175 (two tailed). The mean
decrease in GAD -7 scores was 1.84 with a 95% confidence interval ran ging from -.94 to 4.63.
The eta squared statistic (.147) indicated a large effect size. Although there was some positive
effect (i.e., decrease in group GAD -7 score) for the C G, this was not statistically significant.
6.4.3. Post -Intervention and Follow -Up periods 1, 2 and 3 measures of parent
anxiety across the three support groups.
6.4.3.1. Functional Behavioural Assessment Training Group .
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 6.36, SD =
3.80) to FU1 ( M = 7.36, SD = 6.34), t (10) = -.498, p = .629 (two tailed). The mean decrease

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in GAD -7 scores was -1.00 with a 95% confidence interval ranging from -5.47 to 3.47. The
eta squared statistic (.023) indicated a small effect size. Therefore, it can be concluded that
there was no statistically significant difference in the participants’ anxiety scores at Post –
Intervention and at FU1.
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ anxiety as measure d via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 6.55, SD =
3.84) to FU2 ( M = 6.44, SD = 3.20), t (8) = .083, p = .936 (two tailed). The mean decrease in
GAD -7 scores was .1 1 with a 95% confidence interval ranging from -2.97 to 3.19. The eta
squared statistic (.000) indicated no effect size. Although there was some positive effect (i.e.,
decrease in group GAD -7 score) for the FBATG, this was not statistically significant.
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 6.10, SD =
3.90) to FU3 ( M = 7.20, SD = 6.14), t (9) = -.740, p = .478 (two tailed). The mean decrease in
GAD7+ scores was -1.10 with a 95% confidence interval ranging from -4.46 to 2.26. The eta
squared statistic (.057) indicated small effect size. Therefore, it can be concluded that there
was no statistically significant difference in the participants’ anxiety scores at Post –
Intervention and at FU3.
6.4.3.2. Skills Training Group .
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 4.75, SD =

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3.67) to FU1 ( M = 4.58, SD = 5.35), t (11) = .109, p = .915 (two tailed). The mean decrease
in GAD -7 scores was .166 with a 95% confidence interval ranging from -3.19 to 3.52. The
eta squared statistic (.000) indicated no effect size. Although there was some positive effect
(i.e., decrease in group GAD -7 score) for the STG, this was not statistically significant.
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decreas e in GAD -7 scores from Post -Intervention ( M = 4.75, SD =
3.67) to FU2 ( M = 4.58, SD = 4.87), t (11) = .240, p = .815 (two tailed). The mean decrease
in GAD -7 scores was .166 with a 95% confidence interval ranging from -1.36 to 1.69. The
eta squared statist ic (.005) indicated a small effect size. Although there was some positive
effect (i.e., decrease in group GAD -7 score) for the STG, this was not statistically significant.
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 5.10, SD =
3.95) to FU3 ( M = 4.30, SD = 3.83), t (9) = 1.037, p = .327 (two tailed). The mean de crease
in GAD -7 scores was .80 with a 95% confidence interval ranging from -.94 to 2.54. The eta
squared statistic (.106) indicated a moderate effect size. Although there was some positive
effect (i.e., decrease in group GAD -7 score) for the STG, this was not statistically significant.
6.4.3.3. C ombined Group .
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 6.66, SD =
4.43) to FU1 ( M = 5.66, SD = 3.02), t (11) = 1.149, p = .275 (two tailed). The mean decrease

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in GAD -7 scores was 1.00 with a 95% confidence interval ranging from -.91 to 2.91. The eta
squared statistic (.006) indicated a small effect size. Although there was some positive effect
(i.e., decrease in group GAD -7 score) for the CG, this was not statistically significant.
The paired -samples t -test conducted to evaluate the effect of CG attendance on
particip ants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistically significant decrease in GAD -7 scores from Post -Intervention ( M = 6.80, SD =
5.07) to FU2 ( M = 7.10, SD = 1.99), t (9) = -.310, p = .763 (two tailed). The mean decrease in
GAD -7 scores was -.30 with a 95% confidence interval ranging from -2.48 to 1.88. The eta
squared statistic (.000) indicated no effect size. Therefore, it can be concluded that there was
no statistically significan t difference in the participants’ anxiety scores at Post -Intervention
and at FU2.
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ anxiety as measured via total GAD -7 scores indicated that there was no
statistica lly significant decrease in GAD -7 scores from Post -Intervention ( M = 7.70, SD =
4.71) to FU3 ( M = 8.20, SD = 5.86), t (9) = -.473, p = .647 (two tailed). The mean decrease in
GAD -7 scores was -.50 with a 95% confidence interval ranging from -2.89 to 1.89. The eta
squared statistic (.000) indicated no effect size. Therefore, it can be concluded that there was
no statistically significant difference in the participants’ anxiety scores at Post -Intervention
and at FU3.
Overall, the GAD -7 group scores indicate t hat participants reported the greatest level
of anxiety at Pre -Intervention for all three groups ( M = 7.58, SD = 6.08). Parents reported
lower levels of anxiety at Post -Intervention ( M = 6.08, SD = 4.03) and slightly increased
levels of anxiety at FU1 ( M = 5.91, SD = 5.88). Parents’ evaluations of their anxiety levels

128

decreased slightly at FU2 ( M = 5.38, SD = 4.00) compared to FU1. At FU3, parents reported
a slight increase in their anxiety levels ( M = 11.56, SD = 8.20).
The impact of time (i.e., 5 months from Pre -Intervention to Follow -Up 3) upon
parents’ self-reports of anxiety varied for the three different support groups . When observing
the results for the FBATG, parents’ evaluations of their anxiety levels decreased sig nificantly
at Post -Intervention and at FU2. Parents’ attending the STG self -reports of anxiety decreased
at Post -Intervention and kept decreasing up to FU3. For parents attending the CG, it appears
that parents’ self-reports of anxiety decreased consistently from Pre -Intervention up to F U1.
Then parents’ anxiety levels increased at FU2 and they kept increasing at FU3, appearing
quite different from parents attending the FBATG and parents attending the STG. The mean
estimates of parents’ self -report of anxiety across five time periods have been presented in
Figure 1.

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Figure 1. Mean estimates (comprising self -reported anxiety using the total score of the GAD7)
calculated separately for the FBATG, the STG and the C G presented across five time periods.

6.4.4. Pre -and-Post Intervention measures of par ent depression across the three
support groups.
6.4.4.1. Functional Behavioural Assessment Training Group .
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Pre -Intervention ( M = 9.00, SD = 6.82)
to Post -Intervention ( M = 7.81, SD = 5.30), t (10) = .702, p = .499 (two tailed). The mean
decrease in PHQ -9 scores was 1.18 with a 95% confidence interval ranging from -2.56 to
4.93. The eta squared statistic (.046) indicated a small effect size. Although there was some 0246810
Pre-Intervention Post-Intervention Follow-Up 1 Follow-Up 2 Follow-Up 3Estimated Marginal Means
Time Periods FBA Training
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Skills Training
Group
Combined
Group

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positive effect (i.e., decrease in group PHQ -9 score) for the FBATG, this was not statistically
significant.
6.4.4.2. Skills Training Group .
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was nearly a
statistically significant decrease in PHQ -9 scores from Pre -Intervention ( M = 6.41 , SD = 3.39)
to Post -Intervention ( M = 4.66, SD = 3.17), t (11) = 2.049, p = .065 (two tailed). The mean
decrease in PHQ -9 scores was 1.75 with a 95% confidence interval ranging from -.12 to 3.62.
The eta squared statistic (.275) indicated a large effect s ize. Therefore, it can be concluded
that there was nearly a statistically significant difference in the participants’ depression scores
at Pre -Intervention and at Post -Intervention.
6.4.4.3. C ombined Group .
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Pre -Intervention ( M = 9.07, SD = 5.83)
to Post -Intervention ( M = 9.23, SD = 6.32); t (12) = -.133, p = .896 (two tailed). The mean
decrease in PHQ -9 scores was -.153 with a 95% confidence interval ranging from -2.66 to
2.36. The eta squared statistic (.000) indicated no effect size. There fore, it can be concluded
that there was no statistically significant difference in the participants’ depression scores at
Pre-Intervention and at Post -Intervention.

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6.4.5. Post -Intervention an d Follow -Up periods 1, 2 and 3 measure s of par ent
depression across the three support groups.
6.4.5.1. Functional Behavioural Assessment Training Group .
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 7.27, SD =
4.64) to FU1 ( M = 7.63, SD = 4.71), t (10) = -.180, p = .861 (two tailed). The mean decrease
in PHQ -9 scores was -.36 with a 95% confidence interva l ranging from -4.86 to 4.13. The eta
squared statistic (.000) indicated no effect size. Therefore, it can be concluded that there was
no statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU1.
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 7.44, SD =
5.02) to FU2 ( M = 8.55, SD = 5.12), t (8) = -.531, p = .610 (two tailed). The mean decrease in
PHQ -9 scores was -1.11 with a 95% confidence interval ranging from -5.93 to 3.71. The eta
squared statistic (.033) indicated a small effect size. Therefore, it can be concluded that there
was no statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU2.
The paired -samples t -test conducted to evaluate the effect of FBATG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 7.10, SD =
4.86) to FU3 ( M = 7.80, SD = 7.96), t (9) = -.398, p = .700 (two tailed). The mean decrease in

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PHQ -9 scor es was -.70 with a 95% confidence interval ranging from -4.67 to 3.27. The eta
squared statistic (.001) indicated no effect size. Therefore, it can be concluded that there was
no statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU3.
6.4.5.2. Skills Training Group .
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 4.66, SD =
3.17) to FU1 ( M = 5.08, SD = 5.14), t (11) = -.352, p = .731 (two tailed). The mean decrease
in PHQ -9 scores was -.41 with a 95% confidence interval ranging from -3.02 to 2.18. The eta
squared statistic (.001) indicated no effect size. Therefore, it can be concluded that there was
no statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU1.
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 4.66, SD =
3.17) to FU2 ( M = 5.25, SD = 4.39), t (11) = -.667, p = .426 (two tailed). The mean decrease
in PHQ -9 scor es was -.58 with a 95% confidence interval ranging from -2.50 to 1.34. The eta
squared statistic (.038) indicated a small effect size. Therefore, it can be concluded that there
was no statistically significant difference in the participants’ depression sco res at Post –
Intervention and at FU2.
The paired -samples t -test conducted to evaluate the effect of STG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was a nearly

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statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 4.90, SD =
3.44) to FU3 ( M = 3.50, SD = 3.27), t (9) = 1.709, p = .122 (two tailed). The mean decrease
in PHQ -9 scores was 1.40 with a 95% confidence interval ranging from -.45 to 3.25. The eta
squared statistic (.244) in dicated a large effect s ize. Although there was some positive effect
(i.e., decrease in group PHQ -9 score) for the STG, this was not statistically significant.
6.4.5.3. C ombined Group .
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was a
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 9.00, SD =
6.55) to FU1 ( M = 7.00, SD = 5.39), t (11) = 2.321, p = .040 (two tailed). The mean decrease
in PHQ -9 scores was 2.00 with a 95% confidence interval ranging from .10 to 3.89. The eta
squared statistic (.328) indicated a large effect size. Therefore, it can be concluded that there
was a statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU1.
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no
statistically significant decrease in PHQ -9 scores from Post -Intervention ( M = 8.90, SD =
6.72) to FU2 ( M = 8.40, SD = 7.04), t (9) = .745, p = .475 (two tailed). The mean decrease in
PHQ -9 scores was .50 with a 95% confidence interval ranging from -1.01 to 2.01. The eta
squared statistic (.058) indicated a small effect size. Although there was some positive effect
(i.e., decrease in group PHQ -9 score) for the CG, this was not statistically significant.
The paired -samples t -test conducted to evaluate the effect of CG attendance on
participants’ depression as measured via total PHQ -9 scores indicated that there was no

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statistically significant de crease in PHQ -9 scores from Post -Intervention ( M = 10.00, SD =
7.07) to FU3 ( M = 10.70, SD = 6.84), t (9) = -.500, p = .629 (two tailed). The mean decrease
in PHQ -9 scores was -.70 with a 95% confidence interval ranging from -3.86 to 2.46. The eta
squared statistic (.000) indicated no effect size. Therefore, it can be concluded that there was
no statistically significant difference in the participants’ depression scores at Post –
Intervention and at FU3.
The impact of time (i.e., 5 months from Pre -Interventio n to Follow -Up 3) upon
parents’ self -reports of depression varied for the three different support groups. Parents’
highest self-report s of depression were identified at Pre -Intervention for all three support
groups. For p arents attending the FBATG ( M = 7.81, SD = 5.30 ) and the STG (M = 4.66, SD
= 3.17) , self -report s of depression decreased at Post -Intervention and it decreased slightly
again at FU1. Furthermore, parents attending the FBATG (M = 8.55, SD = 5.12) and the STG
(M = 5.25, SD = 4.39) self-reports of depression increased at FU2 compared to FU1 and even
compared to Post -Intervention. At FU3, parents ’ self -reports of depression decreased for
parents attending the FBATG ( M = 7.80, SD = 7.96) and for parents attending the STG ( M =
3.5, SD = 3.27) . For parents attending the CG, self -reports of depression only decreased at
FU2 ( M = 7, SD = 5.39). The mean estimates of parents’ self -report of depression across five
time periods have been presented in Figure 2.

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Figure 2. Mean estimates (comprising self-reported depression using the total score of the
PHQ9) calculated separately the FBATG, the STG and the CG presented across five time
periods.

6.4.6. Pre -and-Post Intervention an d Follow -Up periods 1, 2 and 3 measures of
parent -reported frequency of ASD behaviour in children across the three support groups.
The impact of time (i.e., 5 months from Pre -Intervention to Follow -Up 3) upon the
parents’ evaluations of their child’s ASD -related behaviour was similar for the three different
support groups. Parents reported a decrease in problematic behaviours upon the evaluations
of their child’s ASD -related behaviour at Post -Intervention and decreased even more at FU1
for all three support groups . Parents’ evaluations of their child’s ASD -related behaviour
indicated that they identified an increase in their child’s use of unwanted behaviours at FU2
compared to FU1. At FU3, only parents attending the STG reported a slight decrease in their 024681012
Pre-Intervention Post-Intervention Follow-Up 1 Follow-Up 2 Follow-Up 3Estiamted Marginal Means
Time Periods FBA Training
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Skills Training
Group
Combined Group

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child’s usage of problematic behaviours upon the evaluations of their child’s ASD -related
behaviour. The mean estimates of parents’ self -report of their child’s ASD -related behaviour
across five time periods have been presented in Figure 3.

Figure 3. Mean estimates of child’s ASD -related behaviour reported by participants from the
FBATG, the STG and the CG across five time periods.

354045505560
Pre-Intervention Post-Intervention Follow-Up 1 Follow-Up 2 Follow-Up 3Estimated Marginal Means
Time Period FBA Training
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Skills Training
Group
Combined
Group

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6.4.7. Pre -and-Post Intervention and Follow -Up periods 1, 2 and 3 measures of
parent ratings of the quality of the rel ationship with their children across the three support
groups.
The impact of time (i.e. 5 months from Pre -Intervention to Follow -Up 3) upon parents’
evaluation o f the quality of the relationship with their child varied for the three different
support groups. Parents attending the FBATG reported a steady increase in the quality of the
relatio nship with their child from Pre -Intervention (M = 190.56, SD = 12.66) to FU2 ( M =
195.56, SD = 14.05). At FU 3 parents attending the FBATG reported a decrease in the quality
of the relationship with their child ( M =186.11, SD = 17.17) compared to FU 2. Parents
attending the S TG reported steady results in the quality of the relationship with their child
from Pre -Intervention ( M = 198.4, SD = 14.93 ) to FU2 ( M = 197 .1, SD = 11.91 ). At FU3
parents attending the STG reported a n increase in the quality of the relationship with their
child ( M =200.8 , SD = 20.59 ). Parents attending the CG reported a steady decrease in the
quality of the relationship with their child from Pre -Intervention ( M = 209.28, SD = 11.25) to
FU3 ( M = 200.14, SD = 9.96). The mean estimates of parents’ self -report on the quality of
their relationship with their child across five time periods have been presented in Figure 4.

138

Figure 4. Mean estimates of PCR upon the parents’ evaluations of the quality of their
relationship with their child from the FBATG, the STG and the CG across five time periods.

6.4.8. Parent ratings of support group satisfaction/value in relation to session
number and topic across the three support groups.
6.4.8.1. Parent ratings of support group satisfaction.
At Post -Intervention (week 7) participants were asked to complete a brief
questionnaire to report of their overall satisfaction about the training group that they attended.
Participants were asked ten different questions. To begin, parents were asked to rate how
helpful the group sessions had been to them, using a ten -point Likert scale ranging from 1
“not at a ll helpful” to 10 “extremely helpful”. Participants responses ranged from 4 to 10,
with a mean score of 8.19 out of 10 ( SD = 1.47). The most common examples of what 185190195200205210
Pre-Intervention Post-Intervention Follow-Up 1 Follow-Up 2 Follow-Up 3Estimated Marginal Means
Time Period FBA Training
Group
Skills Training
Group
Combined
Group

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participants found most helpful when they attended their group included: 1) Talking to othe r
parents ( n = 8); 2) Goal setting assessment ( n = 5); 3) Identifying triggers for unwanted
behaviours ( n = 5); 4) Coping strategies and optimism ( n = 4); 5) Feeling empowered and
confident in dealing with ASD child ( n = 4). Then, parents were asked to rat e on a ten -point
Likert scale ranging from 1 “not at all satisfied” to 10 “extremely satisfied”, how satisfied
they were with the parent group sessions they attended. Again, participants’ responses ranged
from 4 to 10, with a mean score of 8.28 out of 10 ( SD = 1.47). The most common examples
of what parents were satisfied with from attending the groups were: 1) Opportunity to learn
so much practical information ( n = 8); 2) Experience and values of other parents in the group
(n = 7); 3) Learning how to evalu ate problems ( n = 5); 4) Facilitator was calm and non –
judgemental ( n = 4); 5) Guidance received from the facilitator ( n = 3); 6) Professionalism of
facilitator for the delivery ( n = 3).
Participants were asked if there was anything they were not satisfied with from the
group sessions they attended. Of 36 participants, 6 parents (17%) mentioned that they were
not satisfied with: 1) Even though the times offered were good, the sessions should not be run
during school holidays ( n = 1); 2) The programme was not needed ( n = 1); 3) Some of the
questions from the survey could have been worded easier ( n = 1); 4) More sessions could be
implemented to follow up what parents put in practice ( n = 1); 5) Mother felt like a failure
when other people in her group did not u nderstand what she was going through ( n = 1); 6)
Information on how to target the child’s unwanted behaviours at school could have been
provided to assist the teacher ( n = 1).
Parents were asked if the training sessions they attended helped them to cope with
some issues of importance to them. Of 36 participants, 34 parents (94%) believed that the
group they attended helped them to cope with some issues of importance to them. Whe n

140

parents were asked whether they would attend similar parent group sessions run at CASD in
the future, 33 parents said “yes” (92%), 2 parents replied “no” (5%) and 1 parent replied
“maybe” (3%). When parents were asked whether they would be interested in attending
programmes run by other organisations which aim to help with building their capacity to cope
with the demands they face, 34 parents replied “yes” (94%), 1 parent replied “no” (3%) and 1
parent replied “maybe” (3%). Finally, parents were asked if the wished to make any final
comments about the parent group sessions they attended at CASD and 21 parents (58%) of
parents left a comment. Some examples of the comments made by participants included: 1)
The facilitator was wonderful, likeable and understa nding ( n = 4); 2) The sessions were very
well planned and professional ( n = 3); 3) Thank the facilitator for the groups ( n = 3); Very
satisfied with the parent group sessions ( n = 3).
6.4.8.2. Value ratings in relation to session number and topic attributed by
participants attending the F unctional Behavioural Assessment Training Group .
The overall values given by participants for each session of the FBATG are presented
in Figure 5. Participants were asked to score how valuable they found the six se ssions they
attended in the FBATG to be, using a seven -point Likert scale ranging from 1 “not valuable”
to 7 “very valued”. Overall, participants attending the FBATG rated session 2 “getting to
understand how your child reacts” ( M = 5.91, SD = 0.83), sessi on 4 “Understanding the ways
in which behaviour leads to positive outcomes” ( M = 6.5, SD = 0.53), and session 5 “Some
tips for helping your child to learn” ( M = 6.44, SD = 0.52) as the most valuable sessions of
the entire training group. Even though sessio n 6 “Reviews, questions, and final comments”
(M = 6.33, SD = 0.51) was rated highly by participants, it was a review session in which
participants could select the topics they wished to review with the facilitator. Consequently,
session 6 was not selected as one of the three most valuable session rated by participants. As

141

can be seen in Figure 5, session 1 “Ways that autism affects your child” ( M = 5.6, SD = 1.07),
and session 3“Identifying the triggers for the behaviour you would like to change” ( M = 5.88,
SD = 0.64) obtained the lowest ratings out of all six sessions that participants attended and
rated.

Figure 5 . Mean scores attributed by participants ( n = 11) to indicate how valuable they found
each session of the FBATG to be, using a seven -point Likert scale.
Participants were also asked to rate the value they attributed to the four topics
addressed in each session, using a seven -point Likert scale ranging from 1 “not valuable” to 7
“very valued”. According to participants’ ratings, the most valuable topic of session 1 was
“Covert and overt modalities of behaviour” ( M = 6.2, SD = 0.91). The topics participants
scored as being most valuable in session 2 were “Target behaviour” ( M = 5.73, SD = 0.90) 01234567
1 2 3 4 5 6Overall Value Attributed to Each Session
Sessions FBA Training
Group
Poly. (FBA
Training
Group)

142

and “The func tions of behaviour” ( M = 5.73, SD = 1.00). The most valuable topic from
session 3 was “Information on the antecedents and pre -behaviours” ( M = 5.88, SD = 1.12).
The most valuable topic reported by participants for session 4 was “The use of the A -B-C
table ” (M = 6.62, SD = 0.51). The most valuable topics identified in session 5 were
“Manipulating the situation that triggers unwanted behaviour” ( M = 6.11, SD = 0.78) and “the
use of the A -B-C table” ( M = 6.11, SD = 0.78). For session 6, participants were aske d to list
the information they wanted the facilitator to revisit with them. Participants rated “Covert and
overt modalities of behaviour” ( M = 6.33, SD = 0.51) and “The use of the A -B-C table” ( M =
6.33, SD = 0.81) as the most valuable topics addressed in session 6. The value attributed to
the topic “Use of the A -B-C Table” steadily increased from session 2 ( M = 5.45, SD = 1.12)
to session 6 ( M = 6.33, SD = 0.81), with a pick observed in session 4 ( M = 6.62, SD = 0.51).
6.4.8.3. Value ratings in relation to session number and topic attributed by
participants attending the S kills Training Group .
Participants were asked to score how valuable they found the six sessions they
attended in the STG to be, using a seven -point Likert scale ranging from 1 “not valua ble” to 7
“very valued”. Overall, participants attending the STG rated session 2 “Coping strategies” ( M
= 5.6, SD = 0.84), session 4 “One’s personal strengths” ( M = 5.82, SD = 0.40) and session 5
“Self -efficacy” ( M = 6, SD = 0.50) as the most valuable sess ions of the STG. Even though
session 6 “Reviews, questions and final comments” ( M = 5.88, SD = 0.35) was rated highly
by participants, it was a review session in which participants could select the topics they
wished to review with the facilitator. Subseq uently, session 6 was not selected as one of the
three most valuable sessions rated by participants. Session 1 “Support received” ( M = 4.58,
SD = 1.16) received the lowest rating out of all six sessions. An increase in score was
observed in session 2, wit h a slight decrease in how participants scored session 3 “Positive

143

emotions” ( M = 5.33, SD = 0.65). The variation in the value attributed by participants for
each session from the STG has been represented in Figure 6.

Figure 6 . Mean scores attributed by participants ( n = 12) to indicate how valuable they found
each session of the STG to be, using a seven -point Likert scale.
Participants were asked to rate the value they attributed to the four topics addressed in
each session, using a seven -point Likert scale ranging from 1 “not valuable” to 7 “very
valued”. Participants reported “Goal settings exercise and its functions” ( M = 5.17, SD = 1.46)
as the most valuable topic addressed in session 1. The most valuable topic of session 2 was
“Coping strategies” ( M = 5.7, SD = 0.67). The topic on “Positive experiences” in session 3
was rated as the most valuable topic ( M = 5.42, SD = 0.66). In session 4, the most valuable 01234567
1 2 3 4 5 6Overall Value Attributed to Each Session
Sessions Skills Training
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topic was “Positive outcomes when one is high on optimism” ( M = 5.91, SD = 0.30). Two
most va luable topics were identified in session 5, the first one being “Some coping strategies
you apply in day -to-day life” ( M = 5.78, SD = 0.83) and “Goal setting exercise” ( M = 5.78,
SD = 0.66). For session 6, participants reported “Coping strategies” ( M = 5.7 5, SD = 0.70)
and “Goal setting exercise” ( M = 5.75, SD = 0.46) as the two most valuable topics. The value
attributed to the topic “Goal setting exercise” steadily increased from session 1 ( M = 5.17, SD
= 1.46) to session 6, with a pick in session 5.
6.4.8.4. Value ratings in relation to session number and topic attributed by
participants attending the C ombined G.
The three most valuable sessions from both the FBATG and the STG were selected as
the six sessions that would make up the sessions of the CG. Consequently, session 2 from the
STG was used as session 1 for the CG. Likewise, sessions 4 and 5 were respectivel y used as
sessions 2 and 3 for the CG. Sessions 2, 4 and 5 from the FBATG were referred to as
sessions 4, 5 and 6 for sessions in the CG. When comparing the sessions that were utilised in
both the FBATG and the CG, participants rated the overall value of each session similarly.
For instance, in the FBATG participants attributed session 5 ( M = 6.44, SD = 0.52) a similar
score for overall value of the session compared to session 4 (FBATG = Session 6) of the CG
(M = 6.36, SD = 0.67). The means for the value a ttributed by participants for the three
sessions from the FBATG used in the CG, have been compared to the means for the value
attributed by participants from the F BATG and can be seen in Table 9 .

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Table 9 :
Means and Standard Deviations for the Value Attributed by Participants from the CG and by
Participants from the FBATG for the Same Three Sessions They Received

Similar results were obtained when comparing the results from parents who attended
the STG than parents who received the same sessions in the CG. Participants in the STG
rated the overall value of session 5 ( M = 6, SD = 0.5) similarly to participants in session 3
(STG = Session 5) of the Combined Group ( M = 5.82, SD = 0.98). The means f or the value
attributed by participants for the three sessions from the STG used in the CG, have been
compared to the means for the value attributed by participants from the ST G and can be seen
in Table 10 .

FBA
Training
Group
Mean Standard
Deviation Combined
Group Mean Standard
Deviation
Session 2
5.91 0.83 Session 4
(FBATG =
Session 2) 6 0.63
Session 4
6.5 0.53 Session 5
(FBATG =
Session 4)
6.14 1.06
Session 5
6.44 0.52 Session 6
(FBATG =
Session 5)
6.36 0.67

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Table 10:
Means and Standard Deviations for the Value Attributed by Participants from the CG and by
Participants from the STG for the Same Three Sessions They Received

Participants were asked to score how valuable they found the six sessions they
attended in the CG to be, using a seven -point Likert scale ranging from 1 “not valuable” to 7
“very valued”. The overall values attributed to each session of the CG are presented in Figure
8. Participants attending the CG rated session 4 “Getting to understand how your child reacts”
(M = 6, SD = 0.63) , session 5 “Understanding the ways in which behaviour leads to positive
outcomes” ( M = 6.14, SD = 1.06) and session 6 “Some tips for helping your child to learn
new behaviour” ( M = 6.36, SD = 0.67) as the most valuable sessions of the programme
compared t o the ratings participants attributed to session 1 “Coping strategies” ( M = 5.67, SD
= 0.86), session 2 “One’s personal strengths” ( M = 5.8, SD = 0.78) and session 3 “Self -Skills
Training
Group Mean Standard
Deviation Combined
Group Mean Standard
Deviation
Session 2 5.6 0.84 Session 1
(STG =
Session 2)
5.67 0.86
Session 4 5.82 0.40 Session 2
(STG =
Session 4)
5.8 0.78
Session 5 6 0.50 Session 3
(STG =
Session 5) 5.82 0.98

147

efficacy” ( M = 5.82, SD = 0.98), obtaining significantly higher value in the sessions from the
FBATG compared to the sessions from the STG. A steady increase in the value of the
sessions reported by participants attending the CG was observed, as can be seen in Figure 7.

Figure 7. Mean scores attributed by participants ( n = 13) to indicate how valuable they found
each session of the CG to be, using a seven -point Likert scale.
Participants were asked to rate the value they attributed to the four topics addressed in
each session, using a seven -point Likert scale ranging from 1 “not valuable” to 7 “very
valued”. According to participants’ ratings, the most valuable topic of session 1 was “Goal
setting exercise” ( M = 6, SD = 1). The most valuable topic from session 2 was “Some copin g
strategies you apply in your day -to-day life” ( M = 5.8, SD = 0.91). The most valuable topic
identified in session 3 was “SPELL Framework” ( M = 6.09, SD = 0.83). Participants reported 01234567
1 2 3 4 5 6Overall Value Attributed to Each Session
Sessions Combined Group
Poly. (Combined
Group)

148

the highest topic ratings for session 4, with “Target behaviour” ( M = 6.18, SD = 0.87) and
“The functions of behaviour” ( M = 6.18, SD = 0.60) being scored as the two most valuable
topics of the session. The most valuable topic identified in session 5 was “Review of the
terminology learnt so far” ( M = 6.29, SD = 0.75). Finally , participants rated “Use of the A -B-
C Table” ( M = 6.45, SD = 0.68) as the most valuable topic of session 6. The value attributed
to the topic “Goal setting exercise” in the first half of the programme gradually decreased
from session 1 ( M = 6, SD = 1) to session 3 ( M = 5.45, SD = 1.50). The value attributed to the
topic “Use of the A -B-C Table” in the second half of the programme steadily increased from
session 4 ( M = 6.09, SD = 0.53) to session 6 ( M = 6.45, SD = 0.68).
6.4.9. Summary of findings study 1 .
6.4.9.1. Summary of parent -reported major difficultie s and major concerns for their
child with ASD.
Participants reported the current major difficulties that they encountered with their
child, as can be seen in Table 1 1. Parents described the major concerns that they had about
their child’s future and the information has been presented in Table 1 2. This information
clearly highlights some of the child -oriented motivators for parents to seek group support.
Table 11 :
Major Difficulties Parents of Children with ASD Experienced at the time of Pre -Intervention
Major Difficulties Frequency ( n) Percentage (%)
Behavioural difficulties 7 19
Anxiety and stress 6 17
Academic/School difficulties 5 14

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Major Difficulties Frequency ( n) Percentage (%)
Social skills difficulties 5 14
Lack of emotional regulation 4 11
Anger and unpredictability 4 11
Need for control 2 6
Lack of coping skills 1 2
Communication difficulties 2 6

Table 12 :
Major Concerns Parents of Children with ASD Described at the time of Pre -Intervention for
Their Child’s Future
Major Concerns Frequency ( n) Percentage (%)
Inability for child to become independent 10 28
Child’s inability to control anger/aggression 6 17
Schooling challenges/difficulties 5 14
Child care after parents’ death 5 14
Child’s inability to socialise 4 11
Others taking advantage of child 3 8
Child’s inability to fit into neuro -typical society 2 6
Child ending up in jail 1 2

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6.4.9.2. Summary of parent -reported anxiety findings across the three support groups.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three different interventions (FBATG, STG, and CG) on participants’ scores on the
GAD -7, across fiv e time periods (Pre -Intervention, Post -Intervention, 1 month Follow -Up, 2
months Follow -Up and 3 months Follow -Up). There was no significant interaction between
programme type and time, Wilks Lambda = .800, F (8, 40) = .590, p = .78, partial eta squared
= .11. There was no substantial main effect for time, Wilks Lambda = .706, F (4, 20) = 2.08,
p = .121, partial eta squared = .294, with all three groups not showing an amelioration in their
anxiety levels across the five time periods. The main effect compari ng the three types of
intervention was not significant, F (1, 23) = 1.385, p = .270, partial eta squared = .107,
suggesting no significant difference in the effectiveness of the three training approaches in
terms of their effect upon the parents’ anxiety l evels.
6.4.9.3. Summary of parent -reported depression findings across the three support
groups.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three different interventions (FBATG, STG, and CG) on participants’ scores on the
PHQ -9, across five time periods (Pre -Intervention, Post -Intervention, 1 month Follo w-Up, 2
months Follow -Up and 3 months Follow -Up). There was no significant interaction between
programme type and time, Wilks Lambda = .804, F (8, 40) = .575, p = .79, partial eta squared
= .10. There was no substantial main effect for time, Wilks Lambda = .949, F (4, 20) = .267,
p = .895, partial eta squared = .05, with all three groups not showing an amelioration in their
anxiety levels across the five time periods. The main effect comparing the three types of
intervention was not significant, F (1, 23) = 1.574, p = .229, partial eta squared = .120,

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suggesting no significant difference in the effectiveness of the three training approaches in
terms of their effect upon the parents’ depression levels.
6.4.9.4. Summary of parent -reported frequency of ASD beha viour in children across
the three support groups.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three different interventions (FBATG, STG, and CG) on participants’ scores on the
ASD Behaviour Checklist Test, ac ross five time periods (Pre -Intervention, Post -Intervention,
1 month Follow -Up, 2 months Follow -Up and 3 months Follow -Up). There was no
significant interaction between programme type and time, Wilks Lambda = .638, F (8, 38) =
1.198, p = .32, partial eta s quared = .20. There was a substantial main effect for time, Wilks
Lambda = .463, F (4, 19) = 5.518, p <.005, partial eta squared = .53, with all three groups
showing a reduction in the frequency of unwanted behaviours scores across the five time
periods. T he main effect comparing the three types of intervention was not significant, F (1,
22) = .612, p = .55, partial eta squared = .053, suggesting no significant difference in the
effectiveness of the three training approaches in terms of their effect upon th e parents’
evaluations of their child’s ASD -related behaviour.
6.4.9.5. Summary of parent -reported quality of relationship with their child across the
three support groups.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three different interventions (FBATG, STG, and CG) on participants’ scores on the
PCR scale, across five time periods (Pre -Intervention, Post -Intervention, 1 month F ollow -Up,
2 months Follow -Up and 3 months Follow -Up). There was no significant interaction between
programme type and time, Wilks Lambda = .658, F (8, 40) = 1.163, p = .35, partial eta

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squared = .19. There was no substantial main effect for time, Wilks Lam bda = .916, F (4, 20)
= .459, p = .77, partial eta squared = .08, with all three groups not showing an amelioration in
the quality of the relationship with their child across the five time periods. The main effect
comparing the three types of intervention was significant, F (1, 23) = 3.588, p = .04, partial
eta squared = .238, suggesting a statistically significant difference in the three training
approaches in terms of their effect upon the parents’ evaluations of the quality of their
relationship with the ir child.
6.5. Study 1 discussion.
Three different types of support group models (FBATG, STG, and CG) were
compared through the implementation of in depth and multiple pre – and -post-measures of
changes in mental health/functioning for participants to detect any immediate changes and to
examine the maintenance of any changes over time. Study 1 aimed to overcome a limitation
from previous research by enabling participants to give their opinion on each session and by
asking participants which sessions from the support group they attended w ere most helpful.
The aim was to measure whether participants attending the CG would give similar ratings of
satisfaction with the sessions and the grou p, as participants attending the FBATG and the
STG did.
The present study investigated the effects of three models for delivering group -based
support to parents of children with ASD on parent mental state ( i.e., anxiety and depression),
parents’ frequency reports on their child’s autistic behaviours, parents’ reports on the quality
of the relationship with their child, and parenting satisfaction. Study 1 aimed to find solutions
to ensure that participants wou ld be able to attend sessions; by giving participants’ the
opportunity to select the support group and the time of day they wished to attend. This
recruitment strategy was used in order to limit participants’ withdrawing from the study, as

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they were able to select the group that suited their needs at the time , and they were able to
select a time that was most convenient for their busy schedules .
The discussion of the results presented for study 1 will address participants’
inconsistent attendance across the three different support group s and participants’ overall
retention rates for the entirety of the support groups. The high recruitment of mothers in study
1, compared to the low recruitment of fathers will be briefly discussed. Information on the
use of group content to assist parents of children with ASD will be discussed. The limitations
from previous research on group support to assist parents of children with ASD will be
addressed and used to explain some of the steps applied in our research. Participants reports
of anxiety and depression across five different times (Pre -Intervention, Post -intervention,
FU1, FU2, and FU3) will be discussed and compared to previous research findings. Parents ’
reports on the frequency of their child’s autistic behaviours and on the q uality of the
relationship with their child across five different times will also be discussed and compared to
previous research findings.
6.5.1. Participants’ attendance patterns across the three support groups.
Recruitment and participants’ retention were challenges noted in study 1 , and similar
difficulties were discussed in other studies of Parent Support Groups (PSG) use (Bitsika &
Sharpley, 1999; Fontana , Fleischman, McCarton, Meltzer, & Ruff , 1988; Smith , Gabard,
Dale, & Drucker, 1994). Such limitations were not only observed for r esearch projects
administering PSG in a face -to-face setting , but they were also noted in research projects that
offered PSG online for parents of children with ASD. For instance, a study conducted by
Clifford and Minnes (2013) explained that the majority of parents ( N = 119) who indicated an
interest in participating in their online PSG did not, in the end, register for a group. Of those
who registered ( n = 36), many did not attend even half of the sessions ( n = 16). Other

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researchers report similar issues with attendance in their studies of support groups for this
population (Bitsika and Sharpley, 1999) and for parents of children with other disabilities
(Smith et al., 1994) and for parents of children with special needs (Fontana et al., 1988). For
example, Troester (2000) invited 200 parents of children in special education programmes to
participate in PSG at the child’s school , and only 20 parents registered to attend the groups
offered . Of the 20 parents who registered their interest in attending the PSG, only 12 parents
ended up attending a group . Eight more parents were registered with the groups, to reach a
total number of 20 participants , with only 10 parents completing the p ost-group survey. Due
to the low retention rate of participants in the study , Troester (2000) did not complete any
quantitative data analyses.
The inconsistent attendance of participants in study 1 has been addressed in section
three of Chapter 6. A few participants gave explanations for their inability to attend a session;
this information will be discussed now . For one evening session , half of the participants
attending the STG were unable to come to the session due to a thunderstorm. Parents
explained th at their child was highly anxious when there were thunderstorms, and as a
consequence they were unable to attend the session. Furthermore, 12 parents were unable to
attend a session because they could not find anyo ne to look after their child. Another 4
participants missed one session when their child was suspended from school; these parents
had no one who could look after their child during the day. The reasons why parents were
unable to attend sessions across the three support groups were mainly due to environmental
factors that parents had very little control over.
Researchers who examine the implementation of PSG for parents of children with
ASD in the future should expect a very low proportion of interested par ents to actually
register and attend the support group, and thus, efforts should be made to recruit many more

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parents than are required for sufficient power in the study. Furthermore, the role of individual
differences and preferences of parents could be i mportant factors to consider in optimizing
attendance and is worthy of further investigation, particularly as it is expected that self –
selection bias in these studies can play a role in bo th attendance and outcomes. The sample of
participants recruited in study 1 included a heterogeneous group of parents and children,
which further limits our ability to assess the outcome of participation in study 1 .
The increase in interest in fatherhood research has taken place because of the limited
effort so far directe d toward examining fathers’ experiences, in contrast to the extensive
literature on mothers. Indeed, recent research on father –child attachment has dramatically
increased over the past two decades suggesting that fathers play a fundamental role in
preservi ng a healthy psychosocial development for their children (Grossmann et al., 2002;
Hazen, McFarland, Jac obvitz, & Boyd -Soisson, 2010). Carpenter and Towers (2008) noted
that researchers have described fathers as ‘hard to reach’, ‘the invisible parent’, and the
‘shadow’. In a larger study (Johnson, Frenn, Feetham, & Simpson, 2011), both parents were
asked to fill out separate questionnaires, but more mothers ( n = 261) than fathers ( n = 86)
completed the request. No information was available to explain why few er fathers than
mothers completed surveys in the larger study. However, it is interesting that in numerous
autism studies that attempt to recruit both parents, more often than not, the majority of
participants are mothers.
During the recruitment process f or study 1 , more mothers ( n = 28) than fathers ( n = 6)
were recruited . Of the 6 fathers who participated in the research, 4 fathers (67%) participated
in study 1 because their wife also participated in the research. The remaining 2 fathers (33%)
participated in study 1 on their own and mentioned that they were the primary caregiver for
their child . Our findings on participants’ recruitment are in ag reement with pr evious research

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findings that have also experienced difficulties in recruiting more fathers to participate in
their research (Carpenter & Towers, 2008; Johnson et al., 2011; Turbiville & Marquis, 2001).
Even Johnson and Simpson, (2013) identified that for parents of children with ASD, studies
that attempt to recruit both parents in the parental dyad to answer separate questionnaires
have had difficulty in recruiting fathers. Moreover, there is a gap in the literature on the
ramifications of interpreting thi s mother -only data, as a group, without taking into account
whether their respective spouse was asked to participate in the study and chose not to. There
may be a difference in parenting stress and family functioning across groups of mothers
whose spouses do or do not choose to participate.
6.5.2. Group content .
Bitsika and Sharpley (1999, 2000) found that parents seemed to prefer more strategy –
focused groups that had the goal of teaching parents to cope with stress rather than groups
like those conducted in the current study that had a less direct focus, only connecting parents
and allowing them to discuss topics of interest, although this preference is not supported by
all researchers (Smith et al. , 1994; Solomon , Pistrang , & Barker , 2001). Program evalua tion
of support groups that are implemented clinically could help to determine which of these
variables may be the most important contributors to change in well -being for parents of
children with ASD. Given that expectations for the group and parent needs may have an
effect both on outcomes and attendance, it may be particularly useful to ask parents about
their expectations and needs. This was a strategy that was used in our study in that
participants had the option to select the group they wished to atten d. As a consequence, one
group referred to as “ASD knowledge” was dis continu ed, after a majority of participants
expressed that they would rather access information from the FBATG or the STG groups.

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Monitoring whether expectations are met across the sessions may make it possible to
make changes to the group in order to retain more participants and provide the most
appropriate support to these participants. Because of the small number of parents who
registered for the online support groups, all parents who were available for a given time were
included in that session. Some parents indicated that being in groups with others with similar
experiences to themselves would have been more useful, especially with respect to parents of
older children and parents of children who were lower functioning who were under –
represented in this study. In the future, efforts should be made to offer separate groups to
parents of younger and older children (or adult children) and to separate groups by child’s
level of functio ning.
6.5.3. Limitations of previous research addressed in study 1 .
Previous research on support groups for parents of children with ASD is sparse and
predominantly exploratory (Bitsika & Sharpley , 1999; Carter , 2009). Those studies that have
examined pre – to post -group changes (Bitsika & Sharpley 1999, 2000) are limited by small
sample sizes (ranging from n = 11 to n = 14) and the use of unstandardized measures. Those
studies that have examined the broader group of parents of children with special needs ar e
qualitative (Kerr & McIntosh , 2000) and largely atheoretical (Singer et al. , 1999; Solomon et
al., 2001), focusing on a few general variables ( i.e., helpfulness, group climate, empowerment)
expected to change as a result of support group use. By establishing a theory base to measure
the effects of PSGs systematically , research can better assess the role of PSGs in providing
the most appropriate and effective support for parents of children with ASD.
In developing the format for the support groups in this study, the findings from
previous research on parents’ preferences for support groups were taken into consideration.
Smith and colleagues (1994) surveyed parents of children with special needs about their

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experiences with PSGs. Parents reported a p reference for the support aspect of the group as
opposed to information sharing and teaching from professionals; they enjoyed being able to
meet other parents and share feelings. As well, parents reported that child care and
transportation were both barrie rs to using support groups. Taking these findings into
consideration, this study examined the impact of three different types of support groups that
were designed to address different needs that participants may have, from sharing
experiences and developin g relationships with facilitation from a counselling professional to
learning theoretical and practical information on understanding and managing challenging
behaviours their child might engage in. Participants’ ability to select the group that would
assis t them the most at the time was expected to reduce some barriers to participation; for
example, parents were more likely to come to a group that addressed topics that were of
interest to them. The topics addressed for the CG were based on parents’ reports and ratings
of the sessions conducted in the FBATG and the STG, so as to mirror both the approach
taken by many community PSGs and previous research on in -person PSGs for parents of
children with ASD (Bitsika and Sharpley 1999). Finally, this group design was chosen with a
view to providing different models for agencies wishing to implement similar groups to
support families of children with ASD.
6.5.4. Lack of s ignificant changes in a nxiety and depression symptoms.
Overall , no significant changes in anxiety and depression across the three different
groups (FBATG, STG, and CG) participants attended and across time (Pre -Intervention, Post –
Intervention, FU1, FU2, and FU3) were noted in study 1 . One of twelve t -tests indicated a
decrease in depression for parents attending the CG at FU1, which could be attributed by
chance. No significant changes in anxiety and depression symptoms were observed following
participation in the three support groups. The results obtained in study 1 are similar to results

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obtained in one study conducted by Bitsika and Sharpley (2000), in which they evaluated the
effects of a parent support program with a psycho -educational focus on learning stress
management techniques that included time in each sessio n to discuss parents’ current
concerns. The groups were scheduled for eight weekly 75 -minute sessions, and parents
completed questionnaires after each session and pre – and post -group. There were no
significant changes in stress, anxiety, or depression symp toms following participation in this
group (Bitsika & Sharpley, 2000). The lack of reported anxiety and depression symptoms in
our study may have occurred because the pre -group assessment showed that the mean anxiety
scores and the mean depression scores o f participants fell outside the normal range prior to
participation in the group.
The study conducted by Bitsika and Sharpley (2000) concluded that parents were
especially satisfied with the focus on learning strategies for coping with stress, and the
parents emphasized the value of learning with other parents with whom they could relate. Our
study discovered similar findings, with participants mentioning that they enjoyed talking with
other parents in the group they attended and with participants reportin g learning practical
information as being valuable. Bitsika and Sharpley (2000) also suggested that assisting
parents in learning to cope with their stresses could improve their ability to learn strategies
for managing their child’s behaviour problems.
Study 1 explained that 94% of parents who attended the support groups believed that
the group they attended helped them to cope with some issues of importance to them.
Participants in this study were satisfied with learning information that would assist th em to
understand some of their child’s challenging behaviours, teaching parents some ‘Functional
Behavioural Assessment ’ (FBA) techniques. However , these findings are in contrast to the
recommendations of other researchers (Smith et al. , 1994; Solomon et a l., 2001) who have

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found that parents prefer groups that focus on emotional support and developing a sense of
belonging, rather than sharing information. Therefore, explaining the content of support
groups to participants at the time of enrolment so they c an decide whether the topics will be
of interest to them might be valuable for future research. Such a procedure would allow
participants to have more control over the information they wish to acc ess at the time of
recruitment.
6.5.5. Changes in parent -reported frequency of ASD b ehaviour in their child .
Studies from different countries have shown that behavioural problems in ASD can be
effectively managed with parent -delivered behavioural interventions (Athens & Vollmer,
2010; Jocelyn, Casiro, Beattie, Bow, & Kneisz, 1998). A Canadian research team (Jocelyn et
al., 1998 ) conducted a study in a community day -care centre over 12 weeks. They taught 35
parents the use of functional analysis to understand challenging behaviour in chi ldren with
ASD and developed treatment strategies for managing such behaviours. They found
significant improvements in post -test behavioural measures. In another study using
reinforcement, antecedent -based techniques and environmental manipulations, Butler and
Luselli (2007) demonstrated a reduction in aggression to near zero level among children with
autism aged 1 –13 years.
The finding of the present study is also in line with a large scale randomized clinical
trial, conducted by Bearss et al. (2015), amo ng 180 children aged 3 –7 years with ASD and
behavioural problems in the United States. The investigators randomized children and their
mothers into two groups to receive either parent training or education aimed at examining the
effect of either interventi on on disruptive behaviour in their children with ASD. Bearss et al.
(2015) reported a reduction in disruptive behaviour post behavioural intervention, especially
in the parent training group. A study conducted in Nigeria (Bello -Mojeed, Ani, Lagunju &

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Omig bodun, 2016) also suggests that the behavioural intervention was highly acceptable to
the parents with the vast majority being very satisfied and all participants willing to
recommend it to a friend whose child has similar difficulties. The fact that impro vements
were reported with a relatively short intervention of five sessions is particularly encouraging
because brief interventions are more likely to be feasible in resource -limited settings like
Nigeria. The use of a group format, which could be cheaper than individualised intervention
in a poor resource setting, adds further to the feasibility.
Study 1 assessed parent -reported frequency of ASD behaviour in children across the
three support groups at five different times (Pre -Intervention, Post -Intervent ion, FU1, FU2,
and FU3). Even though there was no indication that any of the three training approaches were
more effective in terms of their effect upon the parents’ evaluation of their child’s ASD –
related behaviour, there was a substantial main effect for time. All three groups showed a
reduction in the frequency of unwanted behaviours scores across the five time periods. Our
findings suggest that parent reports of ASD behaviour in their children could have changed
after they received detailed information on ASD behaviours and were better able to identify
clearly their child’s behavioural repertoire. Our findings and findings from previous research
support the effectiveness of behavioural programmes that include identification of the
functions of challengin g behaviour, and developing a behavioural plan that specifies
strategies to alter the antecedents and reduce the contingencies that increase the behaviour
while enhancing those that terminate or reduce the challenging behaviour. The robustness of
this evid ence underlines its recommendation in guidelines for management of children with
ASD (National Institute for Health and Clinical Excellence (NICE), 2013). However, while
the principles of behavioural intervention based on FBA are now well established, put ting

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them into practice especially with parents with a priori limited knowledge of ASD or
behavioural psychology or even basic literacy can be a challenge.
6.5.6. Changes in parent -reported quality of relationship with their c hild.
In this study, participants were asked to report the quality of their relationship with their
child diagnosed with ASD. Our findings indicated that there was no substantial main effect
for time, with all three groups not showing amelioration in the quality of the relationship with
their child across the five time periods. However, there was a statistically significant
difference in the effectiveness of the three training approaches in terms of their effect upon
the parents’ evaluations of the quality of their rela tionship with their child. Participants
attending the STG reported higher quality relationships with their ASD child than participants
who attended the FBATG or the CG. Previous research findings discovered many forms of
difficulty that can affect parent –child relationships. For instance, stresses in parenting an
atypically developing child can create negative feelings toward the child, alter parent
expectations, and lead to a reduced sense of parenting competence (Van Hooste & Maes ,
2003).
Past research ha s placed an emphasis on the bi -directionality of parent –child relations
(Bell, 1968; DeMol & Buysse, 2008; Kuczynski , Loulis, & Koguchi , 2003). Just as children’s
characteristics affect their relations with parents, interpersonal interactions and relationships
with adults affect children’s development and functioning (Sameroff, 2009). Over time, each
participant and the relationship as a whole undergo transformation (Fogel, 2009). It would
seem inevitable that a child’s autism will influence parent –child interactions. However, there
is limited evidence concerning the relation between autism severity and parent –child
relationships, although these are clearly matters of importance (Markus , Mundy , Morales,
Delgado, & Yale , 2000). On the level of related ness, the more verbal and cognitively able the

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child, the more caregivers tend to engage in mutual play and positive feedback, whereas
parents of children with autism who have poorer joint attention and fewer expressive
language skills spend more time keep ing their child physically contained and oriented to
tasks (Kasari , Sigman, Mundy, & Yirmiya, 1988). As toddlers with autism show higher levels
of externalising problems, their mothers use significantly more active/physical coping
strategies and report grea ter levels of parenting stress (Gulsrud , Laudan, & Kasari , 2010).
This study did not focus on identifying differences in quality of relationships between
parents and children depending on the child’s developmental level. Instead the aim of study 1
was to detect whether one training group would be most efficient in improving parent -child
quality of relationship. Our results indicate that participants attending the STG had improved
quality of relationships with their child at the end of the programme. Such r esults indicate
that teaching coping strategies and skills that would assist parents to deal with their personal
stress might in the long -term enhance the relationship they have with their child.

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7. Study 2 : Applying a Face -to-Face Semi -Structured Interview to Explore the Support
Needs of Parents of Children with ASD
7.1. Study rationale.
The findings derived from study 1 , in which three different approaches to delivering
group -based parent support, explained a strong theme of inconsistent parent participation
despite parents evaluating the value of sessions highly. The prevailing pattern of inconsistent
attendance mapped in study 1 falls in line with previous findings derived from community
and research -based support programmes developed for parents of children with ASD, which
have shown a high likelihood of intermittent attendance or complete withdrawal from group –
based support shortly after that support has been accessed (Lee et al. , 2008; McCabe, 2008).
Researchers (Bromley et al., 2004; Tehee, Honan, & Hevey, 2009) have reported persistent
difficulties in encouraging parents of children with ASD to consistently attend formal support
groups and therefore gain full benefit from those groups. Therefore, identif ication of the
factors that might cause these parents to access support services minimally or irregularly is
crucial to remediating those factors and creating support service approaches that meet
specific parent needs and encourage their consistent attenda nce.
Factors that might cause parents of children with ASD to access support services
minimally or irregularly relate to the time pressures involved in parents’ addressing their
children’s complex needs (Sawyer , Bittman, La Greca, Crettenden, & Harchak, 2010); the
ASD child experiencing health problems (B earss et al. , 2015), and parents ’ inability to find
and sustain appropriate childcare due to the complex nature of their child’s needs (Brennan &
Brannan, 2005; Smith et al., 1994). Clifford and Minnes (2 013) investigated the factors that
predicted attendance of parents of children with ASD in Parent Support Groups (PSG),
asking 149 participants to complete a series of questionnaires investigating their opinions

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toward PSGs. The findings indicated that par ents who were participating in support groups
reported stronger beliefs in the benefits associated with support groups, greater support from
important others to participate in PSGs, and fewer difficulties with participating than parents
who were not curren tly attending (Smith et al., 1994) . Based on the findings of this study, it
would appear that parents are more likely to attend PSGs if they coped by seeking emotional
and instrumental support and by planning and doing something about their problem, if the y
believed that support groups w ould be beneficial, and if they believed that they w ould not
have difficulties attending PSGs (Clifford & Minnes, 2013). These findings suggest that
parents’ attendance to PSGs is related to parents’ beliefs and coping style s.
Investigation into the factors that might predict non -attendance or inconsistent
participation in support groups have primarily focused on child -oriented variables and
research into predictive factors has been criticised due to a paucity of examination into
parent -oriented variables . In response to this limitation, Falk, Norris, and Quinn (2014)
surveyed 479 parents of children with ASD to propose a model for identifying the var iables
that significantly predicted stress, anxiety and depression in parents of those children
(especially the variables which pertained to parents’ daily lives). The results suggest ed that
the relationship between ‘child -centric’ factors and parental men tal health problems may be
mediated by social/economic support and parental cognitions, with significant implications
for support services for this parental group. Another study investigated both child centric
factors and environmental -factors, while consi dering child’s and parents’ characteristics,
services available and family context in the design (Derguy, M’ Bailara, Michel, Roux, &
Bouvard, 2016 ). They analysed the joint impact on self -reported parental stress in ASD of
individual factors (children -related and parent -related factors) as well as environmental

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factors (family environment and services provided for children with ASD) from 115 parents
of children with ASD .
The Falk et al. (2014) study, whilst advancing knowledge into ASD parent experiences,
was limited due to data -collection exclusively via survey administration and this precluded
in-depth investigation of parents’ particular experiences and life circumstances. Furthermore,
this approach might have missed any specific factors capable of revea ling better ways of
approaching support to assist thi s particular group of parents. The Derguy et al. (2016) study
was also limited due to its data -collection, with parents completing a variety of self –
administered questionnaires. Thus, Derguy et al. (2016 ) recruited solely married parents of
children with ASD, limiting the generalisability of the results to a specific group of parents of
children with ASD.
Study 2 aimed to undertake an in -depth investigation of the factors which might act as
barriers to parents of children with ASD seeking and consistently accessing support. That
study also focused on addressing t hree methodological limitations of the previous research.
First, the limitation on the bias towards child factors as being predictive of poor pa rent mental
health outcomes will be overcome in study 2 by exploring a greater range of parent -oriented
factors that might be responsible for parents’ minimal attendance to support groups . Secondly,
the usage of generic nature of data survey to assess part icipants will be overcome in study 2
by using a combination of a semi -structured interview and the completion of the same survey
that was administered in study 1 to examine a variety of predictive factors for poor parent
mental health outcomes.
Thirdly, t o our knowledge previous researchers have failed to gather standardised
responses and in -depth responses from the same group of participants to compare their
responses. This limitation will be overcome, as participants recruited for study 2 attended the

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original support groups from study 1 . A comparison between the standardised context from
study 1 and the responses to the semi -structured interview, through which specific answers
will be elicited, will allow for this third limitation from previous researc h to be overcome.
This return to the original participant group for further investigation was believed to be
practical in order to create methods for support delivery that compensated for the limitations
arising from those circumstances. The repeated use o f participants allowed to identify the
particular life circumstances which might have affected participants’ attendance in study 1 .
Study 2 was designed to address the t hree limitations from p revious research listed above.
The semi -structured interview wa s created to gather in -depth information on parents’
experiences and on the difficulties that parents of children with ASD experience. The aim of
study 2 was to gather information on the models of support delivery that would most likely
meet the individual needs of participants at a future time. Detailed information on the content
and on the admiration of the face -to-face semi structured interview are provided in the
subsequent sections of this chapter.
7.2. Methods.
7.2.1. Participants.
A total of 33 parents participated in study 2 . Of those 33 participants, 30 parents had
completed study 1 , and the remaining 3 parents were participants who had enrolled in study 1
but withdrew from the study at some stage. Participants’ ages ranged from 3 2 to 61 years ( M
= 46.90; SD = 6.52). Of 33 participants, 27 (82%) were female and the remaining 6
participants (18%) were male. The data gathered on the relationship of the parent and/or
guardian to the child with ASD showed that 26 participants (79%) wer e mothers, 5
participants (15%) were fathers and 2 participants were grandparents (6%). The information
on employment status noted that 10 participants (30%) were “stay at home”, 10 participants

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(30%) worked “part -time”, 6 participants (18%) worked “full -time” and the remaining 7
participants (21%) were “studying and/or volunteering in their community”. Of the 17
participants who were unemployed, 16 participants (94%) mentioned that they had to stop
working to care for their child diagnosed with ASD.
Parti cipants’ children’s ages ranged from 8 to 33 years ( M = 12.63; SD = 4.68). Of those
33 children, 23 children (70%) were male and the remaining 10 children (30%) were female.
Of the 33 children, 27 (82%) were reported to have at least one sibling. Of these 27 children,
17 children (52%) had a sibling who was also diagnosed with a disorder, with the following
diagnoses being reported by parents: 1) ASD diagnosis ( n = 11); 2) ADHD diagnosis ( n = 2);
3) Clinical depression ( n = 2); 4) Learning Disability ( n = 1); 5) PANDAS syndrome ( n = 1).
The age range of the siblings also diagnosed with a disorder ranged from 7 to 24 years ( M =
13.58; SD = 4.66).
7.2.2. Procedure.
7.2.2.1. Recruitment of participants.
All parents who had participated in study 1 were sent an email which contained a brief
description of the study and an Explanatory Statement (ES) which provided specific details
on the study aims, procedures, and data -collection methods (see Appendix K for the ES).
Parents interested in participati ng in study 2 were directed to contact the Student Researcher
who phoned them to further explain the procedures they would be involved in. In order to
ensure that parents were comfortable with participating in the study, they were provided with
three oppor tunities to indicate their agreement: first, via response to the initial email sent to
them; second, via verbal confirmation at the conclusion of the researcher -initiated phone call;
and third; via text message agreement 24 hours prior to the interview dat e. Parents had the
option to select the date and time of preference for the face-to-face semi -structured interview
to be conducted. Participants were informed that the interview would be followed by the

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completion of the questionnaire they had already comp leted in study 1 on five different
occasions.
7.2.3. Setting.
Ethical approval was obtained to conduct the semi -structured interviews in a single
session either in the CASD at Bond University or in participants’ homes, and participants
were invited to select the location in which they preferred the interviews be conducted. Of the
33 participants who participated in study 2 , 17 parents (52%) elected to do the interview in
their home. Participants mentioned that it would be more practical for them to do the
interview at home, especially for parents who were home schooling their child and for
parents who did not have a car to come to Bond University. One participant (3%) moved in
NSW, and consequently the interview was conducted on Skype. The 15 remaining
participants (45%) elected to do the interview in the CASD at Bond University. These
participants mentioned that they wished to come to the university, so it would give them a
break from home or because their home was not presentable.
When participants elected to do the semi -structured interview in their homes, the
interviews were conducted in the pa rticipants’ living rooms. For the interviews that we re
conducted at the CASD, the same clinic room was utilised to maintain consistency in the
environment in which participants completed the interview. The private interview room used
to conduct the semi -structured interviews was sound proof and approximately four by five
meters in size. It contained a desk and three chairs. A computer and a phone were on the
desk. A bookshelf was against one wall and a filling cabinet was next to the desk. A sign was
put ou tside of the private interview room, informing people that work was in progress and
asking people not to disturb.

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7.2.4. Data -collection methods.
The d ata-collection was conducted via the administration of a one face -to-face semi –
structured interview and the administration of f ive self-report rating scales, requiring
approximately 1 hour 30 minutes of participants’ time. Participant s’ responses to the
interview questions were logged via handwritten notes and audio recording using an iPad.
The audio rec ordings were essential to ensure the accuracy of the data and were used for the
purpose of transcription. Written consent was secured from participants before any audio
recording took place (refer to Appendix L ). All 33 participants gave their written con sent for
the semi -structured interview to be recorded on an I -Pad. All audio recordings were destroyed
once participants’ interview responses were transcribed.
At the end of the semi -structured interview, participants were provided with a survey
package ( containing the f ive self-report scales) which was completed in the presence of the
Student Researcher who was available to clarify items and assist participants in recording
their responses. This approach was adopted to minimise discomfort for the 5 parents who
suffered from a medical illness or learning disorder ( i.e., dyslexia, cancer, and Chronic
Fatig ue Syndrome). Participants’ answers were written down by the facilitator , sitting next to
them , and asking participants to check that the information was recorded accurately.
Participants’ answers were checked to make sure they had answered all the questio ns from
the five self -report scales before ending the data -collection. The topic structure and content
questions of the semi -structured interview plus the self -report scales which comprise the
survey are de scribed in detail in the subsequent sections of Ch apter 6 .
7.2.4.1. Description of the semi -structured interview.
A combination of 13 open questions and 40 closed questions were asked throughout the
semi -structured interview. Participants were asked twice during the interview if there was
anything else they wished to mention, once at the end of the section on parent m ental state,

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support and self -efficacy and lastly at the conclusion of the interview. The 11 open questions
investigating potential themes have been presented in Table 13 .

Table 13 :
Potential Themes Resulting from the Opened Questions Asked During the Semi -Structured
Interviews
Section Question Number Information Retrieved
Section 3 Parent Anxiety Check (Question 3) Day-to-day situations that trigger
the most anxiety in parents .
Section 4 Parent Depression Check (Question 3)
Day-to-day situations that trigger
the most depression in parents .
Section 5 Parent Social Support (Question 5) Sources, availability and social
suppor t being most helpful to
parents.
Section 5 Parent Social Support (Question 6) Sources, availability and access to
social support lacking or being least
helpful to parents .
Section 5 Parent Social Support (Question 11) Access, availability and satisfaction
with information to help assist
child .
Section 6 Parent Self -Efficacy (Question 1) Parent current concern for child an d
confidence in managing and
resolving this difficulty.

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Section Question Number Information Retrieved
Section 6 Parent Self -Efficacy (Question 4) Concerns for child future
identified and described by
parent.
Section 7 Child Behaviour and Functioning (Question
3) Presence, frequency and
description of child aggressive
behaviour(s).
Section 7 Child Behaviour and Functioning (Question
6) Presence, frequency, and
description of child repetitive
behaviour(s).
Section 8 School Behaviour (Question 11)
Parents’ description of their
relationship with their child’s
teacher(s) and school.
Section 8 School Behaviour (Question 12) Parents’ description of school –
based situations that would
affect their well -being
negatively

The semi -structured interview comprised 54 questions, which were categorised under 8
sections. Section 1 (6 questions) was used to collect biographical details about the child. The
purpose of section 1 was to collect information on the child’s age, gender, and to gain some
knowledge on the child’s developmental stage. Section 2 (8 questions) focused on parents’
biographical details. The purpose of section 2 was to collect information on participants’ age,

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gender, and to identify participants’ employment status and financial comfort to d etect
whether parents of children with ASD experienced any financial difficulties.
Section 3 (3 questions) focused on collecting information on parents’ anxiety. The
Student Researcher accumulated information on participants’ anxiety, checking the intensi ty
of anxiety that participants felt at the time of the interview and identifying situations in
parents’ day -to-day life that would cause them to feel most anxious. Section 4 (3 questions)
collected information on participants’ depression, checking the int ensity of depression
symptoms that participants felt at the time of the interview and identifying situations in
participants’ day -to-day life that would cause them to feel most depressed.
Section 5 of the semi -structured interview gathered information on parent social support
(12 questions), with the following sub -sections being investigated: 1) emotional support
received from family and friends (2 questions); 2) practical support received from family
members and friends (2 questions); 3) the type of suppo rt received from family members and
friends that parents believed was most helpful (1 question); 4) the type of support received
from family members and friends that parents believed was least helpful (1 question); 5)
financial support (3 questions); 6) in formational support (3 questions). Section 5 aimed to
collect information on the type of support received by parents of children with ASD, and to
check whether the type of support parents accessed was helpful or not in their opinion.
Section 6 collected information on parent self -efficacy (7 questions). The questions aimed
to identify concerns that parents had for their child at the moment and concerns that parents

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had about their child’s future. Furthermore, the questions aimed to ga ther ratings on
participants’ confidence in handling the concerns they had for their child, the confidence
parents had about handling their own personal stress and their other children’s personal
needs. This section aimed to detect the extent or strength o f parents’ belief in their own
ability to handle concerns they had for their ASD child. At the end of section 6, participants
were given the opportunity to mention any information or topic that the Student Researcher
did not address yet (1 question).
Secti on 7 (10 questions) focused on the ASD child behaviour and functioning, with three
sub-sections being investigated. The first sub -section assessed the child’s aggressive
behaviour in order to identify the type of aggressive behaviour the child might use, h ow often
the child might use it on a weekly basis and around whom the child would be most likely to
use such aggressive behaviour (3 questions). In the second sub -section parents were asked
whether their child ever used repetitive behaviour, how often thei r child would use repetitive
behaviour on a weekly basis and to describe the types of repetitive behaviour used by their
child (3 questions). In the last sub -section, parents were asked 4 questions on their child’s
sleep behaviour. The aim was to gather in formation on children’s potential sleep difficulties
and to check whether children were taking any type of medication for their sleep difficulties.
Section 8 (3 questions) of the semi -structured interview collected information on school
behaviour. The goal of this section was to get some detailed information on the type of
relationship that parents experienced with their child’s teacher and school, to get some

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examples of school -based situations which could be detrimental to parents’ well -being and
asking p arents if teacher(s) had a clear vision of their child’s long -term future. At the
conclusion of the semi -structured interview participants were offered the opportunity to
mention any information or topic of relevance that the Student Researcher did not add ress so
far (1 question).
The remaining 40 questions consisted of closed questions with the aim of collecting
targeted information capable of being compared across the participant group , and therefore
restricting the information gathered from participants . The closed questions can be found
through the template of the semi -structured interview utilised with participants (refer to
Appendix M). The closed questions investigated the following areas: 1) ASD child
biographical details; 2) Parent biographical det ails; 3) Parent anxiety check; 4) Parent
depression check; 5) Parent social support; 6) Parent Self -Efficacy; 7) Child behaviour and
functioning. It should be noted that participants answered some of the closed questions they
were asked in more detail than was required. Thus, 10 participants that were interviewed
would often refer back to the support group they accessed in study 1 . As a consequence, one
last question was added to the semi -structured interview at the end for participants who
completed study 1, asking “Did you find the programme helpful in overcoming some
challenges you have faced?” The question was asked to 21 participants of 33.
Participants were asked 6 closed questions under the section “ASD child biographical
details”, asking detailed information on the ASD child’s age, gender, formal diagnosis. In this

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section parents were asked whether the ASD child had any siblings and wheth er the siblings
had received any diagnosis. In the following section of the semi -structured interview “Parent
biographical details”, participants were asked 7 questions on their age, gender, employment
status, their financial comfort , and on the expenses they had for their ASD child on a yearly
basis. Participants were asked 2 closed questions in the section “Parent anxiety check”,
checking if parents felt anxious at the time of the interview and asking parents to rate their
anxiety level on a 10 -point Like rt scale how anxious they felt from 1 (not anxious) to 10
(extremely anxious). In the section “Parent depression check ” participants were asked 2
closed questions to check their depression level at the time of the interview and to rate their
depression le vel on a 10 -point Likert scale how depressed they felt from 1 (not depressed) to
10 (extremely depressed).
Under the section “Emotional support” of the semi -structured interview participants were
asked 2 closed questions to rate on a 10 -point Likert scale how emotionally supported they
felt by their family members and emotionally supported they felt by their friends, from 1 (not
at all) to 10 (all the time) . Participants were asked 2 closed questions on “Practical support”
to rate on a 10 -point Likert scale how much help they received from family members in
caring for their ASD children and how much help they received form friends in caring for
their ASD children, from 1 (not at all) to 10 (all the time). Participants were asked 3 closed
questions on “Financ ial support”, checking whether participants received any resources for
their child with ASD from the Government or from other organisations, and asking parents if

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they received or had received in the past any financial support from family members and
frien ds. The next section of the semi -structured interview focused on “Informational
support”, asking participants 2 closed questions to check if they could access information that
would help them to assist their ASD child and checking if parents were happy wit h the
information they had been able to access to assist their child.
Participants were asked 5 closed questions under the section on “Parent self -efficacy”.
Parents were asked to use a 10 -point Likert scale to score how confident they felt in
managing a nd resolving their child’s difficulties, their personal difficulties and in managing
their other children’s needs, using a scale from 1 (not at all confident) to 10 (completely
confident). Parents were asked if they had any concerns for their child’s futur e and if they felt
confident in handling their own stress and personal difficulties. The following section of the
interview focused on “Child behaviour and functioning”. Under the section on “Aggressive
behaviour” parents were asked 2 closed questions. The first closed question asked parents if
their child ever used aggressive behaviour when interacting with other people. For
participants who replied “yes”, they were then asked to rate on a 10 -point Likert scale how
often their child used violent or aggress ive behaviour towards other people, ranging from 1
(not at all) to 10 (all the time). Under the section on “Repetitive behaviour” parents were
asked 2 closed questions. The first closed question asked parents if their child ever used
repetitive behaviour o r made unusual hand/body movements repeatedly. For participants who

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replied “yes”, they were then asked to rate on a 10 -point Likert scale how often their child
used repetitive behaviour , using a scale from 1 (not at all) to 10 (all the time).
Under the s ection on “Sleep behaviour” parents were asked 4 closed questions. The
questions asked parents if their child experienced any sleep difficulties or if their child took
any medication to help them with their sleep. For participants who replied “yes”, they w ere
then asked to rate on a 10 -point Likert scale how often their child experienced sleep
difficulties, using a scale from 1 (not at all) to 10 (all the time). And participants were asked
to name the type of medication their child took to help them sleep. The subsequent section
focused on “School behaviour” parents were asked 1 closed question, checking if parents
believed that their child’s teacher had a clear vision for their child’s long -term future.
Numbers or percentages of people with certain charact eristics, conditions or going
through certain experiences were calculated by the mean or average of the number of times a
response was documented in the semi -structured interviews administered to participants. This
method of analysis was conducted for questions 1, 2, 3, 4, 5, and 6 of the section on “ASD
child biographical details” . It was also used for questions 2, 3, 4, 5, 6, 7, and 8 of the section
“Parent biographical details”. The student researcher applied this type of analysis for
question 1 of the “Parent anxiety check” section and for question 1 of the “Parent depression
check” section. The numbers or percentages of people reporting on the type of “Financial
support” they were able to access or not for questions 7, 8, and 9 were calculated . The same
method of analysis was used under section “Informational support” for ques tions 10 and 12.

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It also applied to the section of the semi -structured interview named “Parent self -efficacy” for
question 3. And this type of analysis was conducted in different sub -sections of the main
section of the semi -structured interview known as “C hild behaviour and functioning”: 1)
Aggressive behaviour (question 1); 2) Repetitive behaviour (question 1); 3) Sleep behaviour
(questions 7, 9 and 10); 4) School behaviour (question 13).
Numbers to the levels of intensity of an observed feeling or behav iour were assigned .
The frequencies rate of intensity of specific behaviours or conditions were assessed and the
information was presented in pie charts and bar graphs to give a visual representation of the
rates given by participants. This method of analy sis was applied for the following sections of
the semi -structured interview: 1) Parent anxiety check (question 2); 2) Parent depression
check (question 2); 3) Parent social support – Emotional support (questions 1 and 2); 4)
Parent social support – Practic al support (questions 3 and 4); 5) Parent self -efficacy
(questions 2, 6 and 7); 6) Child behaviour and functioning – Aggressive behaviour (question
2); 7) Child behaviour and functioning – Repetitive behaviour (question 5); 8) Child
behaviour and functioni ng – Sleep behaviour (question 8). Detailed information on the results
obtained from the different methods of analyses discussed so far has been presented in
Chapter 8 .
7.2.4.2. Process for administering the semi -structured interview.
A range of micro -counselling skills were used during the delivery of the semi -structured
interview in order to secure two objectives. First, to assist participants in exploring the issues

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embedded within the interview in detail and to comfortably reflect an d report on the
particular circumstances which challenged them. Second, micro -counselling skills were
implemented to build rapport and develop a professional relationship between the Student
Researcher and the participants (McLeod, 2013). The overall admin istration of the semi –
structured interview adhered the first stage of Hill’s (2004) Helping Skills Model, which
utilises three distinct stages in implementing counselling therapy: Stage 1 -exploration; Stage
2-insight; and Stage 3 -action. The interview for study 2 was re stricted to “exploration” ( i.e.,
Stage 1) as its focus was on in -depth examination of participants’ unique experiences with no
accompanying therapeutic intention.
The following 4 micr o-counselling skills were used throughout the semi -structu red
interview: attending, restatements, verbal and non -verbal encouragers, and questioning as
means of establishing rapport with participants. The skill of attending was implemented by
genuinely focusing on participants’ internal experiences ( i.e., emotion s, cognitions) and
exhibiting non -verbal responses at an external level which clearly conveyed careful attention
to participants’ statements. Examples of attending skills applied during the interview process
included: 1) finding the right balance of eye co ntact depending on participants; 2) using
opened postures; 3) using a balanced tone of voice. The skill of restatements was used to
verbally encourage participants to continue talking; it involved repeating the main content
and repeating key words shared by participants during the semi -structured interview.

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The skill of encouragers was used to assist participants toward deeper meaning and to
maintain the flow of information coming throughout the semi -structured interview. Examples
of non -verbal encouragers used during the interviews process included: 1) positive facial
expressions; 2) open gestures; 3) silence so participants continued to share information. The
skill of questioning was another micro -counselling skill which consisted of being sensitively
aware of the impact that the questions had on participants (Ivey & Ivey , 1999). Closed
questions were utilised to elicit specific information from participants that could be answered
in a few words, whereas open questions aimed to encourage participants to expand on themes
or topics. The micro -counselling skills described above have been listed in the basic listening
sequence described by Corey (2013) and have been used throughout the semi -structured
interview to enhance participants’ experience and to make sure that participants would feel
comfortable opening up to the Student Researcher.
A significant focus was placed on encouraging participants to share their story, their
thoughts a nd their feelings throughout the semi -structured interview. The use of these
specific skills assisted the facilitator to learn about participants’ perspectives on problems and
challenges they experienced on a day -to-day basis. Furthermore, some micro -couns elling
skills retrieved from the ‘skilled helper model’ developed by Egan (2004) were utilised. This
model proposes a three -stage approach not unlike Hill’s model (2004), however some of the
skills proposed in Egan’s model (2004) differ and were utilised d uring the semi -structured
interview with participants. For instance, some skills applied in the first stage untitled

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“helping the client to tell their story” were used: 1) tuning in – empathic presence; 2)
listening to verbal and non -verbal communication f rom participants; 3) communicating back
to participants what the interviewer understood; 4) probing and summarising the information
shared by participants.
Lastly, prompts were used throughout the interview to encourage participants to be more
detailed or to expand on a topic discussed, or in certain cases to redirect participants to the
initial question they were asked. The use of prompts depended on participants’ answers
throughout the interview. The prompt “is there anything else you would like to menti on?”
was utilised 22 times. Prompts used to encourage participants to be more detailed with the
answer they shared were used 21 times. The prompt “can you give me a few examples
of…?” was used 12 times throughout the semi -structured interview . And finall y, the
facilitator repeated the question that was asked initially 4 times to redirect participants to the
initial question they were asked to answer.
7.2.4.3. Description of the self -report scales.
Participants were required to complete a survey at the conclusion of the interview,
which contained the following five self -report scales: the PHQ9 (Spitzer et al., 1999) was
used to ascertain the overall level o f depression; the GAD7 (Spitzer et al, 2006) was used to
ascertain the overall level of anxiety; th e P-CRI (Gerard, 1994) was used to assess the quality
of parent -child relationship, the CD -RISC (Connor & Davidson, 2003) was used to assess
participants’ resilience; and the ASD Behaviour Checklist (Bitsika & Shapley, 1997) was

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used to assess the presence and intensity of ASD behaviours in children. All five self -report
scales have been described in relation to focus, item content, recording process, and
psychometric properties on pages 108 -115 of Chapter 6 in this thesis.
7.2.4.4. Process for completion of the self -report scales.
A printed out copy of the five self -report scale was given to participants to complete
in the following order: 1) ASD Behaviour Checklist; 2) P -CRI; 3) CD -RISC; 3) GAD7; 4)
PHQ9. The ASD Behaviour Che cklist scale assessed the presence and intensity of ASD
behaviours in children. The P -CRI (Gerard, 1994) assessed the quality of relationship
between parents and children. The CD -RISC (Connor & Davidson , 2003) assessed parents’
resilience levels. The GAD -7 (Spitzer et al., 2006) examined the presence and intensity of
symptoms of anxiety reported by parents of children with ASD. The PHQ -9 (Spitzer et al. ,
1999) assessed the intensity of symptoms of depression experienced by parents.
The instructions were read carefully to participants for the successful completion of
each scale and each time participants finished completing one of the self -report scales, the
answers were checked to make sure that every question was answered . The micro -counselling
skills applied throughout the administration of the self -report scales were described in the
previous section of this chapter, and each micro -counselling skill was used as participants
completed the self -report questionnaire s.

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8. Thematic Analysis Findings on Parent Support Barriers and Needs
8.1. Data analysis procedures for the semi -structured interview and the self -report
scales.
8.1.1. Thematic analysis procedures for the semi -structured interview.
Thematic Analysis (TA) is conducted as part of qualitative research. Several
definitions of qualitative research have been proposed in the literature, and each of these
influences how qualitative data analysis is characterised and the types of analyses that will be
performed on one’s data. Holloway an d Todres (2003) have described qualitative approaches
as being multifaceted, nuanced and incredibly diverse and recommended that TA should be
regarded as a foundational method for qualitative analysis, as TA requires core skills
applicable to many other fo rms of qualitative analysis. TA is used in a multitude of areas
such as psychology (Betenson, 2013; Nkadime ng, Lau, & Seedat, 2016; Pack, H emmings, &
Arvinen -Barrow, 2014), behaviour management (Jones, Monse n, & Franey, 2013; McLean &
Pratt, 2006 ), and med icine (Correa -Velez, Clavarino, & Eastwood, 2005; Hudon et al. , 2012).
Boyatzis (1998) described TA as a tool that could be used across different methods instead of
characterising it as a specific method in itself. In contrast, Braun and Clarke (2006) argu ed
that TA should be viewed as a method in its own right. TA has been described as a useful and
flexible research tool due to its theoretical freedom, which can provide a complex, thorough
and rich account of data in certain instances. It is a method used to identify, analyse and

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report themes within data which aims to interpret different aspects of a research topic
(Boyatzis, 1998).
Despite these proposed benefits for interpreting qualitative data, TA has received
criticism over the past decade. The critic s made about TA have been addressed by several
researchers (Antaki , Billig, Edwards, & Potter, 2002; Attride -Stirling, 2001; Tuckett, 2005)
and some solutions have been offered to remediate to such criticisms of TA. For instance,
Antaki et al (2002) propos ed a common critic on the absence of succinct and specific
guidelines around TA, implying that the ‘anything goes’ criticism can be justified. A solution
was offered by Holloway and Todres (2003) to remediate to the critic made by Antaki and
colleagues (20 02). Holloway and Todres (2003) encouraged researchers to make their
assumptions about the data explicitly, so they would expose clear guidelines for this process.
Another critic of TA advanced that this type of analysis was perceived as a poorly
branded method, not holding a similar status to other methods such as narrative analysis and
grounded theory (Attride -Stirling, 2001; Tuckett, 2005). However, Clarke and Braun (2006)
identified that previous research should have identified TA as the qualitative m ethods they
used or they should have used very specific terms to describe the qualitative analyses they ran,
explaining in detailed terms that the data was subjected to qualitative analysis to identify
common themes. Another critic of TA is that the resear ch cannot be evaluated if researchers
do not explain how they conducted the analysis of their data, making it even more

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challenging to compare the research with other studies on the same topic (Attride -Stirling,
2001).The solution offered by Attride -Stirli ng (2001) to remediate this critic was for
researchers using qualitative methods of analysis needed to clearly indicate what they were
doing and explain the reasons why certain qualitative analysis were performed.
Another common critic of TA voiced by Fin e (2002) described the researcher’s
method using TA as simply giving a voice to participants and therefore reputing the active
role the researchers took in identifying themes, selecting which themes are of interest and
reporting on these themes to the read ers. Severall researchers offered a solution to remediate
this critic in previous years, mentioning that researchers must take an active role in
explaining how they identified themes, how they selected which themes are of interest and
reporting on these th emes to the readers (Rubin & Rubin, 1995; Taylor & Ussher, 2001).
8.1.2. Stepwise process for conducting Thematic Analysis of interview data .
8.1.2.1. Outlining the specific analysis process to be performed within the Thematic
Analysis framework .
TA has been described as a process designed to organise and classify data in relation
to themes, which are descriptors for particular trends in the data. A theme might be given
considerable space in some data items, and little or none in others, or it might appea r in
relatively little of the data set. Researcher’s judgement is necessary to determine what a
theme is. Braun and Clarke (2006) encourage researchers to retain some flexibility during

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that process of TA. A method implemented when conducting TA consists o f not reporting
prevalence on participants’ responses and to use general terminology to refer to themes such
‘many participants’ or ‘a number of participants’ (Braun , Gavey, & McPhillips , 2003; Taylor
& Ussher, 2001). Such descriptors work linguistically t o propose a theme truly existed in the
data, and to persuade readers that they were reporting honestly about the data. This seems to
be an area where more discussion is needed about how and why we might characterize the
occurrence of themes in the data, an d, whether, if, and why prevalence is on the whole
imperative.
The six phases involved within TA, as described by Braun and Clarke (2006) can be
quite similar to the phases of other types of qualitative research, so these stages are not
essentially exclusi ve to TA. The process starts when patterns are being noticed, and when
patterns of meaning within the data set are being collected from participants’ responses,
occurring during data collection at times. The process ends when reports are made on the
conten t and meaning themes obtained through the data, where themes are theoretical concepts
being categorized before, during, and after analysis (Ryan and Bernard, 2000). The analysis
process comprises a persistent moving back and forth between the entire data s et, the coded
extracts of data that researchers are analysing (Patton, 1990). Writing can be described as an
essential part of TA, not something that typically takes place at the end, as can be the case
with other statistical analyses. Therefore, writing d uring phase one of the analyses is highly
encouraged, with suggestions on making notes of ideas and potential coding schemes, and

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continuing this writing process right through the entire ana lysis process. According to Ely
and colleagues (1997) this process will develop over time and should not be hurried.
Braun and Clarke (2006) have provided an outline for researchers using TA to work
through, using six different phases of analysis. The guidelines provided by Braun and Clarke
(2006) on using six phases when conducted TA have been well supported and are prominent
in the field of TA. The authors explained that these TA guidelines were created not as rules
for researchers to follow but more as uncomplicated principles that will be applied i n a
flexible fashion to fit with the data obtained from participants and to fit the research questions.
The six phases described by Braun and Clarke (2006) are summarised in Table 9 and
discussed in detail below to elaborate on their distinct purpose and d ata outcomes.
8.1.2.2. Familiarisa tion with the data.
Riessman (1993) clearly explained that the process of transcription was an excellent
technique to use in TA for a researcher to become familiar with the data collected from
participants. Bird (2005) re fereed to this first step as a crucial phase of data analysis within
qualitative methodologies. Just like there is no one way to conduct thematic analysis, there is
no one set of guidelines to follow when typing a transcript. Nevertheless, at a minimum it
involves a laborious and comprehensive ‘orthographic’ transcript, such as a ‘verbatim’
account of all verbal and even at times non -verbal utterances from participants. The most
important quality for a transcript to be considered as thorough is that the tr anscript retains the

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information the researchers need, in a manner which is ‘true’ to its original form (Poland,
2002).
In order to conduct a TA with the verbal data obtained through the semi -structured
interviews done with parents of children with ASD, e ach interview conducted was
transcribed into written form. The transcription of the semi -structured interviews was
conducted, with the aim of becoming familiar with the data set (Riessman, 1993). A
methodical and rigorous ‘orthographic’ transcription of each semi -structured interview was
conducted, in which a verbatim account of all verbal utterances from participants during the
interview were recorded, as sugges ted by Poland (2002).
After the finalisation of each transcript, the Student Researcher checked the transcript
back against the original audio recordings to make sure that accuracy of the data collected
was maintained. This process was part of “Phase 1” d escribed in Braun and Clarke’s (2006)
model of TA (refer to Table 9). Each interview was listened to on two different occasions to
make sure that the transcription of the data was completed efficiently. The transcripts were
read several times during this p hase, but also during the following steps involved in the TA.
8.1.2.3. Generalisation of initial codes .
Braun and Clarke (2006) referred to this process as “Phase 2”, through which
researchers are encouraged to generate a list of ideas about what is in the data set and what is
interesting about these ideas. According to Boyatzis (1998), this second phase inv olves the

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formulation of initial codes obtained from the data set. The data is then organised into
meaningful groups as part of the coding analysis (Miles & Huberman, 1994; Tuckett, 2005).
Bryman (2001) recommended that researchers code for as many potenti al themes as possible,
as no one could predict what might be interesting later on in the analysis and that researchers
keep some of the surrounding data when coding, so the context is not lost.
For the purpose of our TA, the data was approached with speci fic questions in mind
that would be code d around. The questions that were code d around can be seen in Table 13.
Furthermore, the data set was worked through in a systematic manner , giving full and equal
attention to each data item, and identified interesting aspects in the data items that formed the
basis of repeated themes across the data set. The data was coded from the open questions
asked to participants during the semi -structu red interviews (see Table 13).
Potential patterns were noted for each open question asked in each individual
interview. All data extracts were coded separately and then collated together within each
code and relevant data extracts. This process was condu cted using a computer software
known as NVivo11, through which the information was tagged and coded within each data
item. The frequency by which participants used specific words or concepts during the
interview was identified, as recommended by Elo and co lleagues (2014).
For each open question asked to participants, the codes that were extracted were
written down on a different piece of paper out of the data; this technique was previously used

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by Clarke, Burns and Burgoyne (2005). A qualitative content a nalysis also referred to as
deciding on informative name for each theme was utilised as a classification technique to
identify codes that were formed within complex data sets obtained through participants’
responses. A cut off point was utilised to decide whether certain codes should be disregarded
in the TA. A code had to be mentioned by at least 3 participants out of the 33 participants, to
be included in the TA. Consequently, the focus was placed on codes that appeared to be more
common, mentioned at lea st by 3 participants, and codes that appeared atypical, mentioned
by less than 3 participants were removed out of the TA. An example of the process is
presented in Appendix N.
8.1.2.4. Location of themes within the interview data set.
A number of decisions need to be made in order to conduct a reliable and valid TA. It
is highly recommended that a number of questions should be taken into consideration before
analysis and at times even before the data is collected by researchers. Throughout TA,
researchers s hould have an ongoing reflexive dialogue with regards to the issues they will be
confronted with; this process is referred to by Braun and Clarke (2006) as “Phase 3”. To
begin, researchers should ask themselves what information captured could be classified as a
theme. A theme would be defined as something significant about the data collected from
participants in relation to the research question. Two crucial questions should be asked in
terms of coding: 1) what data can be defined as a theme? 2) What ‘size’ does a theme need to

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be? The second question refers to the prevalence, in terms of space within each data item and
of prevalence across the entire data set. Ideally, there will be a number of instances of the
theme across the data set, but more instances do not necessarily mean the theme itself is more
crucial.
A theme might be given considerable space in some data items, and little or none in
others, or it might appear in relatively little of the data set. So, the researcher’s judgement is
necessary to de termine what a theme is. Braun and Clarke (2006) encourage researchers to
retain some flexibility during that process of TA. Decisions can be made not to report
prevalence on participants’ responses and previous researchers have used general
terminology to refer to themes such ‘many participants’ or ‘a number of participants’ (Braun
et al., 2003; Taylor & Ussher, 2001). Such descriptors work linguistically to propose a theme
truly existed in the data, and to persuade readers that they were reporting honestl y about the
data. This seems to be an area where more discussion is needed about how and why we might
characterize the occurrence of themes in the data, and, whether, if, and why prevalence is on
the whole imperative.
The data obtained through the open que stions asked during the semi -structured
interviews conducted with participants was coded and collated. The different codes were
gathered into potential themes and all the relevant coded data was organised under different
themes. The name of each code was w ritten on a different piece of paper for each open

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question asked during the semi -structured interview . Then, codes were organised into theme –
piles. Thematic maps were created for each open question asked to participants (see
Appendix O). Themes and subthe mes were identified, and a quantitative content analysis was
utilised to identify which themes were reported more often by participants.
8.1.2.5 Refinement of initial themes .
Themes or patterns within data can be identified in one of two primary ways in T A: in
an inductive or ‘bottom up’ way (Frith & Gleeson, 2004), or in a theoretical or deductive or
‘top down’ way (Boyatzis, 1998; Hayes, 1997). An inductive approach means the themes
identified are strongly linked to the data themselves (Patton, 1990). In this approach, if the
data have been collected specifically for the research ( i.e., via interview or focus group), the
themes identified may bear little relation to the specific questions that were asked of the
participants. They would also not be driven by the researcher’s theoretical interest in the area
or topic. Inductive analysis is therefore a process of coding the data without trying to fit it
into a pre -existing coding frame, or the researcher’s analytic preconceptions.
In contrast, a ‘theoretical ’ thematic analysis would tend to be driven by the
researcher’s theoretical or analytic interest in the area, and is thus more explicitly analyst –
driven. This form of TA tends to provide a diminished rich description of the overall data,
and a more detaile d analysis of some aspect of the data. Additionally, the choice between
inductive and theoretical maps onto how and why you are coding the data, you can either

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code for a quite specific research question (which maps onto the more theoretical approach)
or the specific research question can evolve through the coding process (which maps onto the
inductive approach).
Another decision revolves around the ‘level’ at which themes should be identified: at
a semantic or explicit level, or at a latent or interpretati ve level (Boyatzis, 1998). TA typically
focuses exclusively or primarily on one level. With a semantic approach, the themes are
identified within the explicit or surface meanings of the data, and the researcher is not
looking for anything beyond what a par ticipant has said or what has been written. Ideally, the
analytic process involves a progression from description, where the data have simply been
organized to show patterns in semantic content, and summarized, to interpretation, where
there is an attempt to theorize the significance of the patterns and their broader meanings and
implications (Patton, 1990), often in relation to previous literature (Frith & Gleeson, 2004).
This process refers to “Phase 4” described by Braun and Clarke (2006).
The TA conduc ted for study 2 was data -driven and consequently an inductive analysis
was used for the purpose of our research. The aim of study 2 was to gather information on a
topic that was poorly investigated in previous research through the use of a qualitative data
analysis. The themes were identified through the combination of a semantic and interpretative
level of analysis. The major themes were generated only from information that participants
had explicitly discussed during the interview, to make sure that the themes generated could

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not be questioned. Interpretations of participants’ responses during the semi -structured
interview were made in order to define clearly each theme generated from the TA.
8.1.2.6 Definition and naming of themes.
Braun and Clarke (2006) described defining and refining themes that will be
presented within the analysis and analysing the data within those themes, as “Phase 5”.
Detailed analysis should be conducted and written for each theme during this fifth phase, t o
make sure that there is no overlap between themes and that the themes are telling the overall
story of the data set. As part of the refinement, identification of any subthemes should be
performed under each a theme. Subthemes are essentially themes -withi n-a-theme. They can
be useful for giving structure to a particularly large and complex theme, and also for
demonstrating the hierarchy of meaning within the data (Braun & Wilkinson, 2003). It is
important that by the end of this phase, themes be clearly de fine for what they are and for
what they are not. Although working titles will have been given already, this is also the point
to start thinking about the names to give themes in the final analysis. Names need to be
concise, punchy, and immediately give th e reader a sense of what the theme is about (Braun
& Clarke, 2006).
The major themes identified were reflected upon under each concept reviewed during
the semi -structured interview, trying to identify whether they highlighted a compelling story
about the data obtained from participants. The main themes were then clearly defined,

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explaining which factors were regarded or disregarded in each theme definition. The nature
of each individual theme was clearly defined and different relationships between themes were
also addressed. Decisions were made on how to develop themes and how to identify
subthemes within themes. An exam ple of a participant’s response for each theme was
presented and the student researcher defined whether the theme identified was child -focused
or environment focused. A summary of the description of the different phases of TA
described by Braun and Clarke (2006) can be seen in Table 14 . The detailed definitions and
naming of each theme for the purpose of study 2 have been presented in Table 15 .
Table 14 :
Description of the Process Used Within Six Different Phases of TA Developed by Braun and
Clarke (2006)
Number Phase Description of Process
1 Familiarising oneself with the data Transcribing data, re -reading the data,
noting down ideas.
2 Initial codes generated Using a systematic technique across the
data set to code features of the data
3 Looking for themes Gathering codes into potential themes,
organising data under each theme

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Number Phase Description of Process
4 Reviewing thermes Checking that themes work in relation to
coded extracts and the entire data set
5 Defining and naming themes Generating clear definitions and names
for each theme
6 Producing a report Relating back analysis to research
questions and previous literature

8.1.3. The benefits associated with using Thematic Analysis .
TA has been considered the most appropriate type of analysis for any study that seeks
to discover information using interpretations. TA provides a systematic element to data
analysis, allowing researchers to associate an analysis of the frequency of a them e with one of
the whole content. This will confer accuracy and intricacy and enhance the whole meaning of
a research. Qualitative research requires understanding and collecting diverse aspects and
data. According to Marks and Yardley (2004) TA is a type of analysis that would give an
opportunity to understand the potential of any issue more widely.
Namey, Guest, Thairu, and Johnson (2008) said that TA moves beyond counting the
number of explicit sentences or words shared by participants. But it focuses on identifying
and describing explicit but also implicit ideas. The data obtained from participants is coded

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for the development of new ideas or themes, so it can be analysed later. The analysis
conducted from the coding of the data can include comparing how often themes or topics
were mentioned within a data set, identifying any code co -occurrence, or displaying
relationships within codes through the use of a graph (Namey et al., 2008).
8.1.4. Reasons why T hematic Analysis is suited to interview data.
The “interview” has been described as a managed verbal exchange (Ritchie & Lewis,
2003; Gillham, 2000) and as such its usefulness heavily rests on the communication skills of
the interviewer (Clough & Nutbrown, 2007). These include the ability to cle arly s tructure
questions (Cohen, Manion, & Morrison, 2007); listen attentively (Clough & Nutbrown, 2007);
pause, probe or prompt appropriately (Ritchie & Lewis, p.141); and encourage the
interviewee to talk freely, “Make it easy for interviewees to respond” (Clo ugh & Nutbrown,
2007, p.134). Interpersonal skills (Opie, 2004) such as the ability to establish rapport, perhaps
with humor and humility, are also important. This last point draws attention to the relational
aspect and trust which is needed between partic ipants.
A useful concept in describing the types of interview processes is the pre -determined
organizational continuum along which any particular interview can be placed which r anges
from ‘unstructured’ ( i.e., spontaneous content and “reactive” questio n asking) and
‘structured’( i.e., pre-determined content and strict question asking). The ‘unstructured’ pole
is closer to observation, while the ‘structured’ use ‘closed’ questions is similar to types of

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questionnaire. The interview implemented with the part icipants of Study 2 fits somewhere at
the mid -point of the continuum due to its ‘semi -structured’ nature. Cohen and colleagues
(2007) draw attention to the variety of interview models discussed in met hodology literature.
Patton (199 0), for example, describ es four types including the “interview guide approach”.
This resembles closely the current interview in its use of a schedule. What is common to the
majority of the differences in approach is the extent to which one interview can be compared
with another.
This ultimately relates to broader questions about qualitative and quantitative
methodologies, a point suggested by Cohen et al. (2007, p.355).The decision to interview
implies a value on personal language as data. Face -to-face interviewing may be appropr iate
where depth of meaning is important and the research is primarily focused in gaining insight
and u nderstanding (Gillman, 2000, p. 11; Ritchie & Lewis , 2003, p.138). It could also be
argued the researcher choosing to interview face -to-face recognises th e potential significance
of context. In relation to this, there is debate between ‘naïve’ realism and constructivist
perspectives. However, from a critical realist position it is possible to recognise the
collaborative qualities of research data while main taining a belief in its validity in revealing
knowledge beyond itself of the social world within which the interview event has occurred
(Banfield, 2004). Semi -structured interviewing is therefore consistent with participatory and
emancipatory models.

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Inter views are a widely used tool to access people’s experiences and their inner
perceptions, attitudes, and feelings of reality. Based on the degree of structuring, interviews
can be divided into three categories: structured interviews, semi -structured intervi ews, and
unstructured interviews (Fontana & Frey, 2005). Semi -structured interviews (see the later
chapter on this method) are more flexible. An interview guide, usually including both closed –
ended and open -ended questions, is prepared; but in the course o f the interview, the
interviewer has a certain amount of room to adjust the sequence of the questions to be asked
and to add questions based on the context of the participants’ responses. In semi -structured
interviewing, a guide is used, with questions and topics that must be covered. The interviewer
has some discretion about the order in which questions are asked, but the questions are
standardized, and probes may be provided to ensure that the researcher covers the correct
material. This kind of interview collects detailed information in a style that is somewhat
conversational. Semi -structured interviews are often used when the researcher wants to delve
deeply into a topic and to understand thoroughly the answers provided.
A combination of closed question s and open questions were asked to participants
throughout the semi -structured interview. The closed questions collected quantitative
information from participants, whereas the opened questions collected qualitative information
from participants. Consequen tly, two different types of analyses were conducted on the data
collected from participants. Qualitative TA was conducted on the data collected from the
open questions asked to participants during the semi -structured interview. Quantitative

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analyses were p erformed on the closed questions asked to participants during the semi –
structured interview and from the self -report questionnaires completed by participants. In this
section of the chapter, the focus will be on the analysis of the qualitative data obtaine d from
the open questions (see Table 13), using TA.
8.2. Findings on Thematic Analysis on participants’ answers to the open
questions of the semi -structured interview.
The open questions asked during the semi -structured interview aimed to gain a thorough
account of qualitative data from participants, and potential themes were retrieved, analysed
and reported upon from 11 open questions of the 13 open questions asked to p articipants
(refer to Table 13) As mentioned previously, only information that was mentioned by a
minimum of 3 participants was included in the TA. Overall, 10 major themes were identified
and defined (presented in Table 15 ). Steps were taken to determine whether themes were
child -focused or environment focused. The environment -focused questions related to parental
social and experiential such as the type of support (i.e., social, economic, and informational)
they could access. The child -focused questions explored factors directly related to their
children’s challenging behaviour, repetitive behaviours, sleep difficulties, and school
difficulties. The themes and sub -themes identified for each open qu estion are discussed on
pages 200 -218 below.

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8.2.1. Major themes identified through the Thematic Analysis .
Major themes were classified under two different categories, referred to as “child -focused”
or “environment focused” themes. Child -focused themes encompassed information that
related specifically t o some aspect of the child’s ASD diagnosis or the outcomes (to the
child’s daily functioning) of that diagnosis. Child -focused themes included parent concerns
centred on the following issues: areas of diagnostic impairment and the presence of restricted
repetitive behaviour patterns and fixated interests; their children’s ’ ability to make age –
appropriate transitions across the lifespan; their children’s ’ mental well -being, physical health
and sleep patterns; and their children’s ’ aggressive and/or self-injurious behaviour.
Environment focused themes encompassed information that related specifically to external
factors present in parents’ lives that were not linked to their ASD child but related to their
personal environment. Environment -focused them es included parent concerns on the
following issues: some aspect of their financial circumstances; some aspect of their child’s
classroom learning behaviour difficulties and some of the difficulties encountered within the
school -environment; work deadlines and/or other work demands; child’s current difficulties;
child’s future; and the most helpful and the least helpful types of support received by parents
of children with ASD. Detailed definitions of each major theme and their classification can
be ob serve d in Table 15 .

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Table 15 :
Major T hemes Named and Defined, and Examples Retrieved from Data Coding for Each Theme Defined.
Theme Definition Response Example Theme Focus

ASD Symptoms The parent expressed concern about some
aspect of their child’s ASD diagnosis. This
theme included concerns related to areas of
diagnostic impairment (i.e., social
communication, non -verbal communicative
behaviours, deficits in developing and
maintaining relationships and reciprocal social
interactions) plus presence of restricted and
repetitive behavioural patterns and fi xated
interests. This theme excluded associated
behavioural problems, sleep and/or eating
difficulties and medical conditions.

“We have the flap with the skip…Her
new thing now is watching something
that she finds to be funny on TV and
she will repeat that one little section
over and over.” Child
Financial The parent expressed concern about some
aspect of their financial circumstances. This
theme included concerns related to areas of
direct financial demands and/or stressors (i.e.,
worrying about money, experiencing financial
difficulties and having to pay b ills). This
theme excluded associated work difficulties
and expenses for their child.

“All our finances were completely
drained. So we had no reserves and
then went into debt. So when bills
come in, we struggle on that.” Environment

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Theme Definition Response Example Theme Focus

School
The parent expressed concern about some
aspect of their child’s learning difficulties at
school. This theme included concerns related
to areas of their child’s classroom learning
behaviour difficulties plus some of the
difficulties encountered within the s chool
environment (i.e., teachers’ limited
understanding of child difficulties and
miscommunication with teachers). This theme
excluded associated behavioural problems
related to their child.

“We were so disappointed with her
report card at the end of s emester
because her teacher was telling us
verbally “oh she is doing great”, but
her report card reflected nothing in
fact it was scathing about her. So we
were shocked.” Environment
Transitions
The parent expressed concern about some
aspect of their child’s abilities to make
transitions throughout their lifespan. This
theme included concerns related to areas of
their child’s difficulties with making
transitions (i.e., transition from primary scho ol
to high school, child’s ability to get a job after
high school). This theme excluded associated
excessive resistance to change, persistence on
following precise routines and the child’s
reactivity to sensory input.

“Transitioning from school to pos t-
school because I don’t want him
sitting at home doing nothing.” Child

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Theme Definition Response Example Theme Focus

Work The parent expressed concern about some
aspect of their work demands. This theme
included concerns related to parent’s work
deadlines and/or other work demands. This
theme excluded associated child symptoms
and difficulties that would require parent to
adjust their work schedule.

“I am probably not overly anxious at
the best of times; you know maybe a
bit of stress with work at times. Okay
probably work commitments.” Environment
Health The parent expressed concern about some
aspect of their child’s health. This theme
included concerns related to their child’s
mental health well -being (i.e., child’s anxiety
and child’s suicidal ideations) plus their
child’s physical health (i.e., child’s inability to
self-care and child’s weight gain) plus their
child ’s sleep difficulties. This theme excluded
associated concerns parent had about their
personal health and/or the health of their
partner.

“I guess we truly worry about her
health at the moment, her oral health
and her weight…and her sleep
patterns are not very good either.” Child
Aggressive Behaviours The parent expressed concern about some
aspect of their child engaging in aggressive
behaviours. This theme included concerns
related to their child’s aggressive behaviours
(i.e., emotional aggressiveness and physical
aggressiveness) plus child’s self -injurious
behaviours. This theme excluded associated
communication and social interaction
difficulties.
“He will just even sometimes walk
past me and just flick at me, or I will
say “go back to your room” a nd he
will say “what are you looking at
Bitch” Child

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Theme Definition Response Example Theme Focus

Concerns for Child The parent expressed concern about some
aspect of their child current and/or future
needs and difficulties. This theme included
parent concerns about their child’s current
difficulties (i.e., poor self -control and their
child’s performance at school) plus parent
concerns about their child’s future (i.e., child
post-school independence, poor child
expression of needs, and continued care of
child post parent death). This theme excluded
associated parent concerns for siblings of the
ASD child.

“My major co ncern would be him
understanding how it is that he is
supposed to fit into society. And he
is never going to be part of
mainstream society, but he needs to
be able to engage with it
sufficiently to be able to function.” Environment
Most Helpful Support The parent described the type of support they
received from friends and family that was
most helpful to them. This theme included
support parent received for their child (i.e.,
acceptance of ASD child) plus support they
received personally (i.e., emotional and
physical support offered, and receiving
financial support). This theme excluded
associated information on support parent
received that was not helpful.

“I am more concerned if they can
do something that is beneficial for
her, but it also benefits m e and that
I have got a few hours or whatever
time away from her.” Environment

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Theme Definition Response Example Theme Focus

Least Helpful Support The parent described the type of support they
received from friends and family that was
least helpful to them. This theme included
information on communication difficulties
(i.e., negative verbal comments made about
child and/or parenting abilities, and pe ople
being judgemental) plus friends and family
having limited understanding of ASD. This
theme excluded associated information on
support that parent described as being most
helpful to them.

“Oh, I suppose it would be well –
meaning advice. Probably fr om
someone who doesn’t have a child on
the spectrum.” Environment

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8.2.2. Child -focused major themes identified .
8.2.2.1. Theme 1: Aggressive behaviours.
The first child -focused major theme identified was labelled as “Aggressive
Behaviours”, and this comprised information on parents’ concerns about some aspect of their
child engaging in aggressive behaviours. This theme included concerns related to their ch ild’s
aggressive behaviours , including emotional aggressiveness and physical aggressivene ss. This
theme also included in formation on their child’s self -injurious behaviours. This theme
excluded associated communication and social interaction difficulties.
This theme arose from one question asked to participants during the semi -structured
interview. Participants’ answers were gathered from question 3 of the “Child Behaviour and
Functioning” (refer to Table 13). The themes were numbered according to the freq uency
parents used to endorse them. The responses from participants were organised through the
use of a process referred to as “deciding on informative name for each theme”, which is part
of the fifth phase in the Braun and Clarke model of TA (2006). The c ut-off system and the
naming process were applied to all of the subsequent TA conducted for the open questions
asked during the semi -structured interview.
Overall, thirty parents (91%) expressed concerns on their child engaging in at least
one type of aggressive behaviour. Participants’ responses have been included under theme 1 :
“Aggressive behaviours”. Three sub -themes emerged from parents’ responses labelled as

209
major theme 1 “Aggressive Behaviours”. One sub -theme was identified from participants’
responses and labelled “ASD Child Emotional Aggressiveness”. This sub -theme included
information shared by thirty parents on their child’s changes in voice when engaging in
aggressive behaviours and on their child’s using manipulation emotionally when engagin g in
aggressive behaviours. This is one example of emotional aggressiveness shared by a parent
“He tried to manipulate me to get what he wants” and “He starts shouting and using
manipulative words like “you don’t love me”.
A second sub -theme was identifi ed and referred to as “ASD Child Physical
Aggressiveness”. This sub -theme included information shared by twenty -one on their child
using physical aggressiveness towards other people such as pushing, kicking and punching.
One example from a parents’ report was “he will try to physically push or hit” . A third
subtheme was labelled “Self -Injurious Behaviours”, and six parents reported that their child
would engage in self -injurious behaviours when being aggressive. This example was given
by a parent “She will scratch quite deep, like really deeply and draw blood” .
8.2.2.2. Theme 2: ASD symptoms and difficulties .
The second child -focused major theme identified was labelled as “ASD
Symptoms/Difficulties” and this comprised information on parents’ concern s about some
aspect of their child’s ASD diagnosis. These parents’ concerns related to areas of diagnostic
impairment including: social communication, non -verbal communicative behaviours, deficits

210
in developing and maintaining relationships and reciprocal s ocial interactions. Parents’
reports of the presence of restricted and repetitive behavioural patterns and fixated interests
were also included in the definition of this theme. This theme arose from two questions asked
to participants during the semi -struc tured interview. Participants’ answers were gathered
from question 3 of the “Parent Anxiety Check” and from question 3 of the “Parent
Depression Check” (refer to Table 13) .
Twenty -two parents (66%) expressed concerns for their child’s ASD symptoms
difficulties; these responses have been included in theme 2. Two sub-themes emerged from
parents’ responses labelled as major theme 2 “ASD Symptoms/Difficulties”. One sub -theme
identified was named “Child’s Progress Difficulties” and consisted of examples of difficulties
the child experienced in progressing in different areas of his/her life due to their ASD.
Fourteen parents expressed concerns on their child’s progress due to their ASD symptoms.
An example given by a parent during the interview was “…My major concern for [child’s
name] is her progression and the way she relates to other people” . A second sub -theme was
identified and named “Child Social Communication Difficulties” and included information
shared by eight participants on their child’s difficulties with communication and their child’s
difficulties with social interactions. An example given by a participant during the interview
around the child’s communication difficultie s consisted of “…his communication now is just
non-existent a lot of the time.”

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8.2.2.3. Theme 3: Health.
The third child -focused major theme identified was labelled as “Health”, and this
theme comprised information on parents’ concerns about some aspect of their child’s health.
This theme included concerns related to their child’s mental health well -being such as their
child exhibiting anxiety and experiencing suicidal ideations. This theme also included
information on their child’s physical health including their child’s inability to self -care and
their child weight gain. Finally this theme also comprised their child experiences of sleep
difficulties. This theme arose from one question asked to participants during t he semi –
structured interview. Participants’ answers were gathered from question 1 of the “Parent Self –
Efficacy” (refer to Table 13).
Eleven parents (33%) expressed concerns about their child’s physical health and/or
their child’s mental health well -being. Two sub -themes emerged from parents’ responses
labelled as major theme 3 “Health”. One sub -theme was named “Physical Health” and this
theme only comprised information on the child’s physical overall health. Five parents
mentioned their child’s physical he alth as being a concern they had for their child at the time
of the semi -structured interview. For example, one parent said “He is one hundred and twenty
kilos and he is only five foot six….weight gain is a huge concern” . The second sub-theme
identified wa s labelled “Mental Health” , and it comprised information on concerns parents
had for their child’s mental health well -being. Altogether, six parents shared concerns they

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had about their child’s mental health well -being. One example shared by a parent was “ We
think he is extremely suicidal” .
8.2.2.4. Theme 4: Transitions.
The fourth child -focused major theme identified was referred to as “Transitions”, and
this major theme focused on parents’ concerns about some aspect of their child’s abilities to
make transitions throughout their lifespan. This theme included concerns related to areas of
their child’s difficulties with making transitions including their child transitioning from
primary school to high school, and their child’s ability to get a job after high school. This
theme arose from two questions asked to participants during the semi -structured interview.
Participants’ answers were gathered from question 1 of the “Parent Self -Efficacy” and from
question 3 of the “Parent Anxiety Check” sections of the semi -structured interview (refer to
Table 13).
Ten parents (30%) reported being concerned about their child’s ability to make
transitions at the present time an d in the future. One sub -theme that was clearly identified was
named “school transitions”. Two sub -themes emerged from parents’ responses labelled as
major theme 4 “Transitions”. The first sub-theme included parents’ reports of their child’s
experiencing m ajor difficulties with transitioning from one school to another , and was
labelled “School Transitions” . Seven parents mentioned their child experiencing difficulties
with making transitions to go to school in the mornings or parents reported concerns for t heir
child’s ability to transition from primary school to high school. One parent mentioned “ I fear

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high school and I fear whether it is gonna work or not” . Another example shared by parents
was concerned with the challenges children experienced with tran sitioning in the mornings
from home to school and in the afternoons from school to home. One parent mentioned “We
have got issues with transitions in the mornings and then in the afternoons” . The second sub –
theme identified referred to parents concerns abo ut their child’s ability to make life
transitions in the future, and it was labelled “Life Transitions”. Three parents reported that
concern and one parent shared the following example “ Well my concern for her is that she is
not going to get a job” .
8.2.3. Environment -focused major themes identified.
8.2.3.1. Theme 1: Concerns for child.
The first environment -focused major theme identified was labelled “Concerns for
Child”. This major theme focused on parents’ expressed concern about some aspect of their
child current and/or future needs and difficulties. This theme included parents’ concerns
about their child’s current difficulties such as their child’s poor self -control and their child’s
performance at school. Parents’ concerns about their child’s future were also included within
that major theme (i.e., child post -school independence, poor child expression of needs, and
continued care of child post parent death). This theme arose from one question asked to
participants during the semi -structured interview. Participants’ answers were gathered from
question 4 of the “Parent Self -Efficacy” (refer to Table 13).

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All participants ( N = 33) reported having one concern for their child at the time of the
semi -structured interview. Two sub -themes emerged from parents’ responses labelled as
major theme 1 “Concerns for Child” . One sub -theme was named “Current C oncerns for
Child” and it included information shared by parents on concerns they currently had for their
child. This sub -them e was reported on by all parents during the semi -structured interview.
Seven parents reported that they were currently concerned for their child as he/she was going
through transitions at school. One parent said “ The biggest concern is that he just started
High School, so that is a major transition” . Eleven parents mentioned that they were
currently concerned for their child’s physical health, with parents mentioning issues with
self-care, general health and weight gain. An example would be “I guess we trul y worry
about her health at the moment, her oral health and her weight” . Seven parents mentioned
being currently concerned for their child’s difficulties with social interactions and for their
child’s communication difficulties in general. One example shared was , “I am concerned that
she doesn’t listen in the mornings or I am concerned about her social interactions at school ”.
The second sub-theme identified was named “Concerns for Child’s F uture”. This sub –
theme was reported on by 29 parents (88%), with t he 4 remaining parents (12%) mentioning
that they were confident for their child’s future. Eighteen parents mentioned that they were
concerned for their child’s care, including their child’s future living arrangements and their
child’s inability to self -care. For instance, one parent said “the major concern is [child’s
name] ability to do things on his own, to live on his own.” Another six parents mentioned that

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they were concerned for their child’s ability to get through High School, and also parents
were concerned about their child’s future school environment. One parent said “My concern
is to continue education that he can learn…and be able to function in a sch ool environment
where he is not bullied” . Thirteen parents explained that they were concerned for their child’s
independent living. Parents were concerned that their child might not get a job after school,
that their child would be unable to live independe ntly and that their child would have no
involveme nt in the community. A parent’s answer was “My major concern would be him
understanding how he is supposed to fit into society and his inability to look after himself”.
And s even parents mentioned that they were concerned about their child’s low self -control
abilities “ he is just defiant to any law or structure” . Another nine parents indicated that they
were concerned about communication and social skills, such as their child’s inability to
communicate their needs and their child’s inability to make friends “ she doesn’t have
appropriate speech to be able to get what she wants in life” .
8.2.3.2. Theme 2: Most helpful support.
The second environment -focused major theme identified was referred to as “Most
Helpful Support”. This major theme focused on parents’ description of the type of support
they received from friends and family that was most helpful to them. This theme included
support parent received for their child such as friends and family members being accepting of
their ASD child. This theme also inclu ded the support they received personally such as
emotional and physical support offered, and receiving financial support. This theme arose

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from one question asked to participants during the semi -structured interview. Participants’
answers were gathered fro m question 5 of the “Parent Social Support” (refer to Table 13).
All participants ( N = 33) reported on different types of support that received from
family members and friends that were most helpful. Four sub -themes emerged from parents’
responses labelled as major theme 2 “Most Helpful Support”. One sub -theme identified was
labelled as “Receiving P hysical Help”. This sub -theme included examples of parents
receiving help to look after their child, so they could have time for themselves or so they
could get time to spend with their spouse. Parents also mentioned that the support they found
to be most helpful consisted of people offering to help them. Overall, twenty -four parents
(73%) mentioned examples of receiving physical help from family members and frien ds as
being the most helpful type of support they received. For example, one parent said “ the
assistance that they give us…some nights we will go out to dinner with friends and the
mother in law will stay here and look after her”.
The second sub -theme identified was referred to as “Receiving Emotional S upport”.
This sub -theme included information shared by parents on their friends and family members
offering them emotional support, and understanding their circumstances. This sub -theme was
addressed by sixt een participants (49%) during the semi -structured interview. For example,
one parent mentioned “just being able to unload and being able to say everything to them” .
The third sub -theme that emerged was labelled as “Receiving Financial A ssistance”. This
sub-theme was addressed by three parents (9%) and included information on some examples

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of financial support they received from friends and family members, one example being “The
biggest support we ever got was that front fence, and we did not pay for that, three different
people paid for it” . A forth sub -theme was named “people interacting with ASD child” and
consisted of friends and family members communicating actively with the ASD child and
people accepting the ASD child. This sub -theme was mentioned by eight parents (24%)
during the semi -structured interview. For instance, one parent mentioned “Engaging with him
in conversation that would be the most important support” .
8.2.3.3. Theme 3: Least helpful support.
The third environment -focused major theme identified was labelled as “Least Helpful
Support”. This major theme focused on parents’ description of support they received from
friends and family that was least helpful to them. This theme included information on
communication difficulties such as negative verbal comments made about child and/or
parenting abilities, and people being judgemental. This theme also included information on
friends and family having limited understanding of ASD. This theme arose from one question
asked to participants during the semi -structured interview. Participants’ answers were
gathered from question 6 of the “Parent Social Support” (refer to Table 13).
All participants ( N = 33) reported on different types of support that received from
family members and friends that were least helpful. Three sub -themes emerged from parents’
responses labelled as major theme 3 “Least Helpful Support. One sub -theme identified
referred to “Communication Difficulties with Friends and F amily”. In this s ub-theme twenty –

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two parents (67%) mentioned the difficulties they encountered with family members and
friends being judgemental, making hurtful comments and giving advice. For example one
parent said “Telling me how to parent them, receiving their ideas on what to do with their
autism” . A second sub -theme was labelled as “Limited Understanding of ASD”, 17 parents
(52%) mentioned experiencing difficulties with people having a poor understanding of ASD
in general, people having communication difficulties with their ASD child and people
changing the ASD child’s routine. For example, one parent said “I suppose their limited
knowledge and their understanding of what is going on, they don’t realise that there are
other things to deal with. ” The third sub -theme ide ntified was labelled “Wrong Type of
Support ”. This sub -theme was mentioned by eleven parents (33%) during the semi -structured
interview . Parents described family members and friends offering the wrong type of support
at times. For instance, one parent mentioned “ my mum will come up and do the dishes,
meanwhile she is saying you should have done it this morning. To her she is helping me
because she is physically doing it but it’s not helpful” .
8.2.3.4. Theme 4: Financial.
The fourth environ ment -focused major theme identified was labelled as “Financial”.
This major theme focused on parents’ concerns expressed about some aspect of their
financial circumstances. This theme included concerns related to areas of direct financial
demands and stressors such as worrying about money, experiencing financial difficultie s and
having to pay bills. This theme excluded associated work difficulties and expenses for their

219
child. This theme arose from two questions asked to participants during the semi -structured
interview. Participants’ answers were gathered from question 3 of the “Parent Anxiety
Check ” and question 3 of the “Parent Depression Check” (refer to Table 13).
Eleven parents (33%) reported having experienced in the past or experiencing at the
moment financial difficulties. Two sub -themes emerged from parents’ respons es labelled as
major theme 4 “Financial”. One sub -theme identified was referred as “Past Financial
Stressors” and included information shared by four participants on financial difficulties they
experienced in the past, such as having to overcome bankruptcy . One example given by a
participant was “ We almost were driven into bankruptcy…we are still feeling the effects of
that” . The second sub -theme identified was labelled as “Current Financial Worries” and
comprised information shared by seven participants on financial worries they had such as
paying bills or worrying about money in general. One example shared by a parent was
“Definitely financial. I don’t like owning people money and I owe the bank a fair bit for this
house so that is probably the only thing, apart from day -to-day expenses” .
8.2.3.5. Theme 5: School.
The fifth environment -focused major theme identified was labelled as “School”. This
major theme comprised information on parents’ concern about some aspect of their child’s
learning difficulties at school. This theme included concerns related to areas of their child’s
classroom learning behaviour difficulties. This theme also focused on some of the difficulties
encountered within the school environment such as teachers’ having limited understanding of

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child difficulties and parents’ experiences of miscommunication with teachers. This theme
excluded associated behavioural problems related to their child. This theme arose from two
questions asked to participants during the semi -structured interview. Participants’ answers
were gathered from question 3 of the “Parent Anxiety Check” and question 1 of the “Parent
Self-Efficacy” (refer to Table 1 3).
Ten parents (30%) reported having concerns for their child due to their learning
difficulties within the school environment. Two sub -themes emerged from parents’ responses
labelled as major theme 5 “School”. One sub -theme was labelled as “Child School
Difficulties” and related mostly to the child’s difficulties to adapt to the school environment,
five parents experienced such difficulties. For instance, one parent said “Definitely when he
does something wrong or bad, I guess it makes me feel as if it reflec ts on me as a parent”.
The second sub -theme was labelled as “School Difficulties with Child” and this sub -theme
focused on the difficulties that five parents experienced with schools being unable to handle
difficulties related to the child’s ASD symptoms. One parent said “I let the school know that
scratching and bitting behaviours might happen…the head of the unit called me and said they
wanted to try to handle it first. They had to evacuate the classroom. He had smashed the
desks over, was banging his hea d into the wall ”.
8.2.3.6 Theme 6: W ork.
The sixth environment -focused major theme identified was referred to as “Work”.
This major theme focused on parents’ concerns about some aspect of their personal work

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demands. This theme included concerns related to parent’s work deadlines and other work
demands. This theme excluded associated child symptoms and difficulties that would require
parent to adjust their work schedule. This theme arose from two questions as ked to
participants during the semi -structured interview. Participants’ answers were gathered from
question 3 of the “Parent Anxiety Check” and question 3 of the “Parent Depression Check”
(refer to Table 13).
Eight parents (24%) reported having concerns ab out meeting work deadlines and
fulfilling work demands. Two sub -themes emerged from parents’ responses labelled as major
theme 6 “Work”. The first sub -theme was labelled as “Work Schedule” and three parents
mentioned having difficulties handling their work schedule, such as changes in shifts and
working at night. One parent said “ Today coming here, I have had to rearrange work around
that…so organising appointments and keeping them ”. The second sub -theme was mentioned
by five parents and it was labelled as “Work Deadlines”. This sub -theme included
information shared by parents on the difficulties they experienced having to complete work
deadlines while making sure that they could assist their child on a daily basis. One parent said
“You know trying to travel to work but the majority of it is deadlines that I have got to meet at
work ”.

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8.3 Findings on participants’ answers to the closed -questions from the semi –
structured interview .
Results obtained through participants’ answers to the 40 closed questions asked
during the semi -structured interview have been presented in the sub sequent sections of
Chapter 8 below: 1) Participants’ financial bracket of income; 2) Participants’ anxiety check;
3) Participants’ depression check; 4) Participants’ social support; 5) Participants’ description
of child behaviour and functioning; 6) Activities participants’ repo rted as being most helpful
from the programme conducted for study 1. Participants’ figures of their financial comfort
were explained, as well as information on the amount of money parents spent on their ASD
child per year on average. Participants’ self -reports of anxiety and depressions were exposed,
and some pie charts were created to present a visual representation of the findings.
Participants’ ratings of the emotional, practical, financial, and informational support they
accessed were presented .
8.3.1 Participants’ financial bracket of income.
Participants were asked to nominate their financial status, using figures of their average
household’s gross income per year. About 52% of participants ( n = 17) reported that their
average household gross income consisted of $81,000 and above per year. An additional 5
participants (15%) reported having an average households’ gross income between $61,000 to
$80,000 per year and 5 more participants (15%) reported having an average households’
gross income between $41,000 to $60,000 per year. The remaining 6 participants (18%)

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indicated that their average households’ gross income was between $20,000 to $40,000 per
year. Participants were asked to indicate the amount of the household gross income that
would go into expenses for thei r child with ASD per year.
Overall , 1 participant was able to give a clear figure on the expenses for her ASD child
per year. This mother explained that the expenses were budgeted at the beginning of each
year. The remaining 32 participants found the ques tion to be challenging to answer. The
results indicated that participants spent from $480 up to $24,000 per year on expenses for
their child with ASD, with participants spending on average approximately $6,305 per year
on expenses for their child with ASD (M = 6305.45; SD = 5848.85).
8.3.2 Participants’ anxiety check.
Participants were asked one closed question to assess their anxiety level at the beginning
of the interview (i.e., “Are you feeling anxious right now?”) and instructed to choose from
two response options (i.e., “yes” or “no”). If participants reported feeling anxious, they were
then asked to rate the intensity of that anxiety on a 10-point Likert ranging from 1 (not
anxious) to 10 (extremely anxious). Overall, 26 parents reported not feel ing anxious during
the interview, 3 parents rated their anxiety at a 5 out of 10, 2 parents rated their anxiety at a 4
out of 10, 1 parent rated their anxiety at a 7 out of 10 and 1 parent rated their anxiety at an 8
out of 10, as can be seen in Figure 8.

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Figure 8. Participants’ ( N = 33) self -report anxiety rating during the semi -structured
interview process.
8.3.3 Participants’ depression check.
Participants were asked one closed question to assess their depression level at the
beginning of the interview (i.e., “Are you feeling depressed right now?”) and instructed to
choose from two response options (i.e., “yes” or “no”). If participants reported feeling
depressed, they were then asked to rate the intensity of that depression on a 10 -point Likert
scale ranging from 1 (not depressed) to 10 (extremely depressed). Overall, 26 parents
reported not feeling depressed during the interview, 2 parents rate d their depression at a 3 out
of 10, 2 parents rated their depression at a 4 out of 10, 1 parent rated their depression at a 5
out of 10, 1 parent rated their depression at a 6 out of 10 and 1 parent rated their depression at
an 8 out of 10. These ratings can be seen in Figure 9. 79% 6% 9% 3% 3%
Not Anxious
Anxiety Rating of 4 out of
10
Anxiety Rating of 5 out of
10
Anxiety Rating of 7 out of
10
Anxiety Rating of 8 out of
10

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Figure 9. Participants’ (N = 33) self -report depression rating durin g the semi -structured
interview process.
8.3.4 Participants’ social support.
8.3.4.1. Emotional support.
Participants were asked two different closed questions to assess the frequency of
emotional support they received from family members first and to assess the frequency of
emotional support they received from friends second. When answering both questions,
participants were asked to score on a scale from 1 (not at all) to 10 (all the time) how
emotionally supported they felt by their family. On average, participants scored the emotional
support they received from family members as 7 out of 10. Subsequently, p articipants were
asked to use the same rating scale to identify how much emotional support they received
from friends. On average, participants scored the emotional support they received from
friends as 6 out of 10. Participants either scored the emotional support received from family 79% 6% 6% 3% 3% 3% Not Depressed
Depression Rating of 3 out
of 10
Depression Rating of 4 out
of 10
Depression Rating of 5 out
of 10
Depression Rating of 6 out
of 10
Depression Rating of 8 out
of 10

226
members and friends under average or over average, meaning that no participants allocated a
score of 5 (sometimes) for the emotional support received from friends and family members.
Figure 10 shows the ratings participants allocated to family members and friends for the
emotional support they received.

Figure10. Participants’ ( N = 33) rating of the emotional support they received from family
members and friends on a 10 -point Likert scale, from 1 ( not at all) to 10 (all the time).
8.3.4.2. Practical support.
Participants were asked two different closed questions to assess the frequency of
practical support they received from family members first and to assess the frequency of
practical support the y received from friends second. When answering both questions,
participants were asked to score on a scale from 1 (not at all) to 10 (all the time) how much 0246810
1 2 3 4 5 6 7 8 9 10Number of Responses
Rating of Emotional Support Family Emotional Support
Friend Emotional Support

227
help they received from family in caring for their child diagnosed with ASD. On average
parents sco red the practical support they received from family members as 7 out of 10.
Afterwards, participants were asked to use the same rating scale to identify how emotionally
supported they felt by their friends. On average, participants scored the emotional support
they received from friends as 2 out of 10.
A significantly lower ratin g for practical support received from friends was reported
compared to the rating given for emotional support received from friends. As observed
previously, participants either scored the practical support received from family members as
“under average ” or “over average ”, no participants allocated a s core of 6 for the practical
support received from family members. Furthermore, when parents were asked to rate how
much help they received from friends in caring for their child diagnosed with ASD,
participants did not allocate scores of 4, 6, 9 or 10 out of 10. On average, 70% of participants
allocated a score of 1 out of 10, indicating that they did not receive any help from friends in
caring for their ASD child. Figure 11 exposes the ratings participants allo cated to family
members and friends for the practical support they received.

228

Figure11. Participants’ ( N = 33) rating of the practical support they received from family
members and friends on a 10 -point Likert scale, from 1 (not at all) to 10 (all the ti me).
8.3.4.3. Financial support.
Participants were asked to answer three different closed questions in this section of
the semi -structured interview. Firstly , participants were asked if they received any type of
financial support from the government or other organisations to assist their child diagnosed
with ASD. A majority of participants ( n = 29) reported having access to financial support to
assist them with the costs associated with caring for a child with ASD, with 4 participants
reporting not having access to any financial support to assist them with the costs associated
with raising a child with ASD. Of the 4 parents who reported not getting any financial
support, 2 parents mentioned that they did not know how to access these services, 1 parent 024681012141618202224
1 2 3 4 5 6 7 8 9 10Number of Responses
Rating of Practical Support Family Practical Support
Friends Practical Support

229
explained that she was on waitlists to access funding through different organisations and 1
parent mentioned that the funding run out when the child turned 7 years -old. Of the 33
participants, 11 parents reported receiving financial support through more than one
organisation. The funding accessed through the government that parents reported a ccessing
the most was the “care r’s allowance” ( n = 19), parents also specifi ed that this funding could
not be accessed anymore when the child turned 16 years old. Another source of financial
support that 6 participants acc essed for their ASD child was “D isability QLD”, through
Centrelink.
A few parents ( n = 3) mentioned that they gained financial support through schools to
assist their child with ASD. For instance, the schools provided the following services for free:
1) Psychology services; 2) Occupational Therapist (OT) services; 3) Bus transport services.
Furthermore, 2 parents of children over the age of 16 years -old explained that their child
accessed “disability support” pensions; consequently these parents did not personally receive
any financial support to assist their ASD children. The other financial support s listed below
have been reported by participants on one occasion: 1) A government -funded package called
“Children with Autism”; 2) The Smith Family Learning for Life scholarship; 3) Gold Coast
REC and Sports; 4) A government -funded “Early I ntervention” package; 5) Monetary
assistance for food through “Act for Kids”; 6) Monetary assis tance through the
Commonwealth B ank; 7) Family tax benefits; 8) Monetary assistance for home schooling
“Distance E ducation”.

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Secondly, participants were asked whether they had any famil y members who had
given them financial support in the past or were currently giving them financial support. The
results indicated that 76% of participants ( n = 25) reported that they had never received any
financial support from family members, 2 participa nts out of 25 mentioned that if they asked
their parents for financial support , then they would receive it. The remaining 8 participants
mentioned that they had received in the past or that they regularly received financial support
from their parents speci fically. Some p articipants ( n = 8) listed the following ways in which
they received financial support from their parents: 1) receiving money directly; 2) Groceries
being purchased for participants; 3) Loans being given by parents; 4) Receiving gifts from
parents for ASD child’s specific needs; 5) Living with parents.
Thirdly, participants were asked whether they had any friends who had given them
financial support in the past or were currently giving them financial support. Participants’
responses indicate d that 91% of parents ( n = 30) had never received any financial support
from friends. Out of these 30 participants, 2 parents mentioned that they had supported their
friends financially in the past. The remaining 3 participants explained the type of financ ial
support that they had received from friends in the past: 1) Giving money so parents could put
it aside for the ASD child’s expenses; 2) Receiving gifts or being taken out to lunch by
friends; 3) Airflight tickets paid by a friend to go on a holiday.

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8.3.4.4. Informational support.
In this section of the semi -structured interview participants were asked to answer two
closed questions. To begin, parents were asked if they were able to access information that
would help them assist their child with ASD. Then, participants were asked if they were
happy with the information they had been able to access so far to assist their child diagnosed
with ASD. The majority of participants ( n = 29) reported that they were able to access
information that would help th em assist their ASD child. Only 1 participant stated not being
able to access information that would help them assist their ASD child. The remaining 3
participants mentioned that they were able to access information to assist their ASD child, but
that they accessed the information with great difficulty.
Lastly , participants’ responses varied when they were asked whether they were happy with
the information they had been able to access so far to assist their child diagnosed with ASD.
Even though participant s were asked to give a ‘yes’ or ‘no’ answer to this question , some
participants answered the question differently. For instance, 5 participants mentioned that
they found the information they were able to access for their ASD child to be sometimes
helpful a nd 3 participants stated that the informati on was helpful most of the time, t hen 19
participants said that the information they accessed for their ASD child was helpful and the
remaining 6 participants mentioned that the information they had accessed so fa r was not
helpful. Furthermore, over a quarter of participants ( n = 9) mentioned that they found it

232
challenging to access information that applied specifically to their ASD child’s difficulties
and needs.
8.3.5. Participants’ description of child behaviour and functioning.
8.3.5.1. Findings on child’s aggressive behaviour.
Participants were asked two closed questions to assess their ASD child’s behaviour
and functioning. To begin with participants were asked if their child ever used aggressive
behaviour when in teracting with other people (i.e. , adults, siblings…). If participants
responded ‘yes’, they were then asked to rate on a 10 -point Likert scale, from 1 (not at all) to
10 (all the time) how often their child was violent or aggressive towards other people on a
weekly basis. Results indicate d that 29 parents of children with ASD reported that their child
used aggressive behaviours when interacting with other people, 3 parents mentioned that their
child did not use any type of violent behaviour when interacting with other people and 1
parent m entioned that her child used self -harming behaviours but was not aggressive towards
other people.
Out of the 29 participants who mentioned that their child used aggressive behaviours
towards others when interacting, 10 participants mentioned that their ch ild also used verbal
aggressive behaviour towards other people. The frequency by which ASD children used
aggressive behaviour when interacting with other people, according to parents’ reports has
been presented in Figure 12. The parent who mentioned that h er child engaged in self –
harming behaviour reported a frequency rating of 3 out of 10.

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Figure 12. Participants’ ( n = 29) rating of their child’s use of physical aggression and
emotional aggression towards other people on a 10 -point Likert scale, from 1 ( not at all) to 10
(all the time).
8.3.5.2. Findings on child’s repetitive behaviour.
In this section of the semi -structured interview , participants were asked two closed
questions. Participants were asked if their child ever did or said the same thing repeatedly or
whether their child made any unusual hand/body movements repeatedly. If participants
responded ‘yes’, they were then asked t o rate on a 10 -point Likert scale, from 1 (not at all) to
10 (all the time) how often their child used repetitive behaviours on a weekly basis. The data
explained that 26 parents out of 33 identified that their child used repetitive behaviour, with
the rem aining 7 parents indicating that their child did not use any type of repetitive
behaviour. 0123456
1 2 3 4 5 6 7 8 9 10Number of Responses
Frequency of Aggressive Behaviour Physical
Aggression
Emotional
Aggression

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The 26 participants who mentioned that their child used repetitive behaviours were
then asked to rate the frequency of their child’s repetitive behaviour on a weekl y basis. About
54% ( n = 14) of parents indicated that their child used repetitive behaviours on a daily basis
and scored it as a 10 out of 10. The remaining scores given by participants to report how
often their child used repetitive behaviours on a weekly basis were the following: 1) 15%
allocated a score of 8 out of 10 for their child’s use of repetitive behaviours on a weekly basis
(n = 4); 2) 12% allocated a score of 9 out of 10 for their child’s use of repetitive behaviours
on a weekly basis ( n = 3); 3 ) About 15% allocated a score of 5 out of 10 ( n = 2) or a score of
4 out of 10 ( n = 2) for their child’s use of repetitive behaviours on a weekly basis; 5) 4%
allocated a score of 7 out of 10 for their child’s use of repetitive behaviours on a weekly basis
(n = 1).
8.3.5.3. Findings on child’s sleep behaviour.
Participants were asked four different closed questions in this section of the semi –
structured interview. To begin with, parents were asked if their child experienced any
difficulties falling and/or staying asleep. If participants answered that question by selecting
‘yes’, they were then asked to rate on a 10 -point Likert scale from 1 (not at all) to 10 (all the
time) how often their child would experience sleep difficulties on a weekly basis. The thi rd
question was asked to all 33 participants and aimed to identify whether participants’ children
took any medication to help with sleep difficulties. If participants replied ‘yes’ to question
three, they were asked to name the medication that their child took to relieve sleep difficulties

235
they experienced. About 67% of participants (n = 22) mentioned that their child experienced
sleep difficulties, 1 additional participant mentioned that her child only experienced
difficulties falling asleep and the 10 rem aining participants mentioned that their child did not
experience any sleep difficulties.
8.3.5.4. Findings on child’s school behaviour.
Parents were asked whether, in their opinion, their child’s teacher had a clear vision
for his/her long -term future. Of 33 parents, 20 parents (61%) believed that their child’s
teacher did not have a clear vision for their child’s long -term future and the 13 remaining
parents (39%) believed that their child’s teacher had a clear vision for their child’s long -term
future. Even though participants were asked to answer a close question, all 33 participants
explained the reason why they answered the question the way they did. For participants who
believed that teachers did not have a clear vision of their child’s long –term f uture the
following reasons were mentioned: 1) Teachers and schools focused on the child’s
curriculum over a yearly period ( n = 15); 2) Teachers had no interest in getting to know the
child and his/her potential ( n = 6), 3) Principals and teachers commente d negatively on
child’s dream of a future career ( n = 3).
8.3.6 Activities participants reported as being most helpful from the programme
conducted for study 1 .
Participants ( n = 21) mentioned some activities that they had found most helpful when
they undertook the FBATG, the STG and the CG, as can be seen in Table 1 6. Participants

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reported more than one activity as being helpful at times and 2 participants mentioned that
they h ad found the training group they attended to be helpful in general , but they could not
mention any specific activity that had been most helpful to them.
Table 16:
Activities from Study 1 that Participants Found to be Most Useful
Activities Number of Responses (n = 21)
Gaining insight from other parents’ experiences 10
Focusing on self -care 08
Use of problem solving skills 05
Identifying triggers for unwanted behaviours 05
Brainstorming 03

8.5. Participants’ anxiety and depression scores compared between study 1 and
study 2 .
The student researcher conducted SPSS analyses to determine the interaction between
programme type and time across five different time periods (Pre -Intervention, Post –
Interve ntion, 1 month Follow -Up, 2 months Follow -Up, 3 months Follow -Up, and Study 2 ).
This analysis was performed also to check the effectiveness of the three training groups
offered to participants in study 1 and their long-term effects on parents’ anxiety levels,
depression levels, on parents’ evaluations of their child’s ASD -related symptoms, and on
parents’ evaluation of their relationship with their child. This type of analysis has been
referred to as a “mixed between -within subjects ANOVA ” by Tabachnick and Fidell (2001 ).

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8.5.1. Summary of parent -reported anxiety findings across parents who attended the three
support groups.
A mixed between -within subjects analysis of variance was conducted to assess the
impact of three diff erent interventions (FBATG, STG, and CG) on participants’ scores on the
GAD -7, across six time periods (Pre -Intervention, Post -Intervention, 1 month Follow -Up, 2
months Follow -Up, 3 months Follow -Up and Study 2 ). There was no significant interaction
betwee n programme type and time, Wilks Lambda = .76, F (10, 28) = .392, p = .93, partial
eta squared = .12. There was a substantial main effect for time, Wilks Lambda = .437, F (5,
14) = 3.61, p = .026, partial eta squared = .563, with all three groups showing a n increase in
their anxiety levels across the six time periods. The main effect comparing the three types of
intervention was not significant, F (2, 18) = .546, p = .589, partial eta squared = .057,
suggesting no significant difference in the effectiveness of the three training approaches in
terms of their effect upon the parents’ anxiety levels. The estimated marginal means of
participants’ anxiety levels at different times of the training groups have been presented in
Figure 13.

238

Figure 13 . Mean estimates of parents’ anxiety self -report from the FBATG, STG and CG
across six time periods.
8.5.2. Summary of parent -reported depression findings across parents who attended
the three support groups.
A mixed between -within subjects analysis of var iance was conducted to assess the impact of
three different interventions (FBATG, STG, and CG) on participants’ scores on the PHQ -9,
across six time periods (Pre -Intervention, Post -Intervention, 1 month Follow -Up, 2 months
Follow -Up, 3 months Follow -Up and Study 2 ). There was no significant interaction between
programme type and time, Wilks Lambda = .439, F (10, 28) = 1.424, p = .221, partial eta
squared = .33. There was no substantial main effect for time, Wilks Lambda = .759, F (5, 14)
= .889, p = .514, p artial eta squared = .24, with all three groups not showing an amelioration 04812162024
Pre-Intervention Follow-Up 1 Follow-Up 3Estimated Marignal Means
Time Period FBA Training Group
Skills Training Group
Combined Group

239
in their depression levels across the six time periods. The main effect comparing the three
types of intervention was not significant, F (2, 18) = 1.143, p = .341, partial eta squa red
= .113, suggesting no significant difference in the effectiveness of the three training
approaches in terms of their effect upon the parents’ depression levels. The estimated
marginal means of participants’ depression levels at different times of the t raining groups
have been presented in Figure 14.

Figure 14 . Mean estimates of parents’ depression self -report from the FBATG, STG and CG
across six time periods.

0369121518212427
Pre-Intervention Follow-Up 1 Follow-Up 3Estimated Mariginal Means
Time Period FBA Training Group
Skills Training Group
Combined Group

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8.6. Study 2 discussion.
The findings derived from study 1 , were used as the foundation for study 2. Study 1
findings from a comparison of three different approaches to deliver ing group -based parent
support, indicated a robust theme of inconsistent parent participation despite parents
evaluating the value of sessio ns they attended highly. This significant limitation of
participants’ inconsistent participation was investigated through study 2 , which aimed to
gather information on the plausible barriers which prevented parents of children with ASD
from attending regul arly PSG. Therefore, study 2 aimed to undertake an in -depth
investigation of the factors which act as barriers to parents of children with ASD seeking and
consistently accessing support. That study also focused on addressing three methodological
limitation s from previous research findings .
First, the limitation on the bias towards child factors as being predictive of poor
parent mental health outcomes was overcome in study 2 by exploring a greater range of
parent -oriented factors that might be responsible for parents’ minimal attendance to PSG.
Secondly, the usage of generic survey methods to assess participants was overcome in study
2 by using a combination of a semi -structured interview and the completion of the same
survey that was adminis tered in study 1 to examine a variety of predictive factors for a lack
of positive parent mental health outcomes. And thirdly, participants recruited for study 2
attended the original support groups from study 1 , allowing for a comparison to be made
betwee n the standardised context from study 1 and the responses to the semi -structured
interview, through which specific answers w ere elicited. This return to the original participant
group for further investigation was believed to be practical in order to creat e methods for
support delivery that compensated for the limitations arising from those circumstances.

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Study 2 was designed to address the three limitations from previous research listed
above. The semi -structured interview was created to gather in -depth information on parents’
experiences and on the difficulties that parents of children with ASD experience. The a im of
study 2 was to gather information on the models of support delivery that would most likely
meet the individual needs of participants at a future time. The discussion of study 2 will
address the mismatch between parents seeking/valuing support and the m accessing that
support. The discussion from study 2 will address the difficulties encountered by pare nts to
attend this second study, a nd a thorough discussion will be undertaken on the plausible
barriers which prevent parents of children with ASD from accessing PSG.
8.6.1. Support seeking/accessing barriers.
The results obtained in study 1 indicated that 23% of participants withdrew from the
groups they attended. The findings fr om the parent satisfaction questionnaire indicated that
participants valued the sessions they attended. Parents were asked if the training sessions they
attended helped them to cope with some issues of importance to them. Overall , 94% of
participants belie ved that the group they attended helped them to cope with some issues of
importance to them. Similar findings have been identified in previous research. Clifford and
Minnes (2013) conducted an online PSG for parents of children with ASD. They identified
that participants reported being satisfied with the support they received and the topics
discussed in the sessions even though 30% of the 119 participants invited to the support
group registered to attend a group and 20 participants completed the post -group survey.
Interestingly, most of the parents who comp leted the post group survey (75 %) in Clifford and
Minnes (2013) study specified that the low attendance was not something they would change
or consider to be an issue.

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Recruitment and participant retention were significant challenges in studies I and II,
and these difficulties have been observed in previous studies that have used PSG (Bitsika &
Sharpley, 1999; Fontana et al., 1988; Smith et al., 1994). Overall, 23% of pa rticipants did not
complete study 1 and only 70% of participants who were recruited in study 1 agreed to
participate in study 2 . Other researchers have described comparable problems with attendance
in their studies when offering PSG to parents of ASD child ren (Bitsika & Sharpley, 1999),
for parents of children with other disabilities (Smith et al. , 1994), and for parents of children
with special needs (Fontana et al. , 1988). For instance, In a study conducted by Fontana and
colleagues (1988), 53 parents of infants in a neonatal intensive care unit were invited to
participate in a PSG, and 60% (n = 32) agreed to participate in the research. However, of
those who agreed to participate in the PSG, only 12 (38%) attended at least one session. As a
consequence , the researchers were unable to calculate changes over time.
In their research, Bitsika and Sharpley (1999 ) concluded that the group was of value
and was helpful to participants, but the methodological limitations of the study, such as small
sample size and the use of unstandardized measures that the participants found difficult to
answer, may have reduced the effects seen on standardized measures of well -being. The
authors recommended that further research be conducted to examine the benefits of support
groups for parents of children with ASD. These research fin dings (Bitsika & Sharpley, 1999,
2000; Clifford & Minnes, 2013) suggest there is a mismatch between parents
requesting/valuing support and them accessing that support , and similar findings were noted
in study 1 . Therefore, it would be reasonable to proceed with an investigation on the specific
barriers that parents of children with ASD experience and that could affect their support
access. In study 1 , the focus of the research was on the members of the support group
themselves in relation to the content of each group and in relation of the methods used to
present the information in session to participants. However, participants were not assessed in

243
relation to their capacity to attend grou ps consistently and no investigation was conducted on
plausible barriers that might prevent participants to access that support. This issue has been
reported in the research but it has not been investigated in a systematic manner. Consequently,
study 2 aimed to explore in detail the particular life circumstances of parents of ASD children
and how those circumstances might act as barriers to seeking and consistently accessing
support.
8.6.2. Par ents’ participation difficulties in study 2 .
As mentioned in th e discussion section of study 1 , participants’ retention rate and
inconsistent participation were significant difficulties, which have been discussed in previous
research findings on PSG use (Bitsika & Sharpley, 1999; Fontana et al., 1988; Smith et al.,
1994). Previous research obtained a retention rate for their participants’ attendance in PSG
for paren ts of children with ASD from 60% to 71 % (Nguyen, Fairclough , & Noll, 2015;
Troest er, 2000) . Altogethe r, a high retention rate was observed in study 1 with 77% of
participants remaining in the groups until the e nd of the sessions; however , some questions
were raised on identifying factors which negatively impacted on parents’ attendance to
sessions.
Some difficulties were observed when trying to book a 90-minute session for
participants to complete study 2 . More specifically , 17 parents (52%) cancelled the first
appointment scheduled for study 2 . Different reasons were given for parents’ inability to
attend the semi -structured interview , such as health problems experienced by parents,
problems experienced with scheduling multiple appointments, and parents undergoing
medical treatments. These findings from study 2 are similar from the findings obtained in
study 1 . Findings from study 1 indicated that 78% of participants did not gain access to
government -funded respite services, with most participants reporting that they experienced

244
difficulties in accessing respite services (28%) or that they were unawar e that they could
access respite services (20%). According to previous research findings, parents of children
with ASD experience more limits on family and community activities, have more caregiving
burden and are more likely to quit their work to look aft er their child with ASD compared to
parents of TD children (Lee et al., 2008).
A study conducted by Dabrowska and Pisula (2010) advanced similar findings to Lee
and colleagues (2008) , with increased burden of parents of children with ASD on dependency
and management, life span care, family disharmony and personal burden. Numerous
participants were unable to attend the initial semi -structured interview scheduled in study 2
due to personal challenges they were facing at the time , such as personal medical prob lems or
having to handle unpredictable events that would affect their daily schedule. Lack of respite
services had a negative impact on participants’ ability to attend most of the sessions offered
in FBATG, STG and CG. Participants’ inability to plan their schedules too far ahead
impacted upon their capacity to attend the initial semi -structured interview , even though
parents had the option to do the semi -structured interview in their home .
8.6.3. Possible barriers to group access/attendance.
8.6.3.1. Financial burden as a possible barrier to group access/attendance .
It is important to acknowledge that parents also have to deal with many other co –
occurring difficulties of having a child with ASD, such as financial and time burden of
medical treatment, r estrictions on social activities and changes to family goals and
achievements (McCubbin et al. , 1982; Lecavalier et al., 2006). Financial costs are high, with
the total cost of raising a child with a disability estimated to be approximately three times
greater than the cost incurred by raising a TD child (Järbrink et al. , 2003). This financial

245
impact is exaggerated by the shortfall that exists between the costs of bringing up a child with
severe disabilities and benefits received (Broach, 2003).
As pointed out in a previous study (Bailey & Simeonsson, 1988), the financial
difficulties faced by parents concern the purchase of suitable equipment, the payment of
specialised services, and funding for leisure activities outside the family. In addition, French
parents have often complained about the non -funding of psycho -education by public
authorities, which is often paid for entirely by the family (Prado, 2012). They also point to
the lack of adequate facilities to cater for the specificities of their children, i ncluding relay
institutions allowing them to get some respite during weekends. This point was highlighted in
the studies by Siklos and Kerns (2006), Ahmadi , Sharifi, Zalani, Bolouk, & Amrai (2011),
and Brown , Ouellette -Kuntz, Hunter, Kelley, & Cobigo (2012) as being one of the most
important needs for parents.
In study 2 , 11 participants (33%) reported being affected by direct financial
demands/stressors that affected their anxiety. These parents reported feeling most anxious
when they experienced: 1) Financial difficulties; 2) worrying about money; 3) experiencing
bankruptcy; and 4) having to pay bills. Experiencing such financial difficulties could make it
challenging for participants to travel to access PSG, and consequently might be a possible
barri er to group access and attendance. As a consequence, participants’ precarious financial
circumstances could negatively affect their ability to access and attend PSG.
8.6.3.2. Child care as a possible barrier to group access/attendance .
A study conducted by Smith and colleagues (1994) investigated parental opinions
about attending PSG. These researchers found that even though PSG initially grew
enthusiasm, they were often poorly attended by parents of children with ASD. Overall, child
care arrangements seemed to be the most significant barrier to attendance parents faced, with

246
56% of parents mentioning that they needed child care to attend a meeting during day -time or
night -time hours. Another study explained that a third of parents report ed experiencing
avoidance and rejection from their family, while other parents identified lack of interest or
understanding of their child (Papageorgiou & Kalyva, 2010). Such findings could partly
explain the difficulties parents of children with ASD have in accessing child care so they can
attend support groups.
In study 1 , a majority of parents who were unable to attend a session mentioned that
they were unable to find someone to look after their ASD child at the time of the session.
Furthermore, partici pants in study 2 rescheduled the semi -structured interview due to the
numerous appointments that parents had to prioritise for their ASD child. These findings are
in accordance with previous research (Papageorgiou & Kalyva, 2010; Smith et al., 1994)
indica ting that parents experience great difficulties with finding childcare that w ill fit their
child’s specific needs. Such findings indicate that a significant proportion of parents might be
unable to attend PSG due to the fact that they are the sole careers for their child and receive
no support for childcare.
In study 2 , parents explained during the semi -structured interview that the practical
support they valued the most was from their spouse and that , even though they received
support from family members in looking after their child, it was not always helpful. Some
parents even mentioned that they would rather not ask family members to look after their
child. Parents mentioned that their child would be highly anxious when they were looked
after by a family member, and that the child was more challenging to handle afterwards. This
information reveals that , even though parents of children with ASD find practical support to
be most helpful to them, the type of practical support received is a crucial factor in parents’
decision to ask someone to look after their child.

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8.6.3.3. Work commitment as a possible barrier to group access/attendance .
Work and employment demands have been found to be challenging for parents of
children with ASD. For instance, parents of children with ASD are seven times more likely to
report that childcare problems substantially affect their employment decisions compare d to
parents of TD children (Montes & Halterman, 2008). Two factors seem to have a negative
impact on parents’ ability to manage their work demands and their child’s needs: (1) the
inability to find and sustain adequate childcare given the complex and idio syncratic nature of
their child’s needs (Brennan & Brannan, 2005; LeRoy & Johnson, 2002; Rosenzweig,
Brennan, Huffstutter, & Bradley, 2008) and (2) finding employment which offers enough
flexibility that the demands of caregiving and work can coexist (Free dman, Litchfield, &
Warfield, 1995; Rosenzweig et al., 2002; Todd & Shearn, 1996).
These results fall in line with the results obtained in studies I and II. For instance, in
study 1 , fourteen participants (70%) enrolled in the night -time sessions due to t he fact that
they worked full -time and would have been unable to attend the sessions during day -time. Of
the 11 participa nts who withdrew from study 1 , three participants (27%) withdrew due to
work related demands that prevented them from attending the gro ups anymore. Furthermore,
for study 2 , eighteen participants (55%) requested to participate in the study outside of their
work hours. Therefore, parents of children with ASD who work full -time can experience
significant challenges in their ability to atten d PSG.
In a study conducted by Papageorgiou and Kalyva (2010) one third of parents stated
that they had not mentioned to people from their work environment that they had a child with
ASD. In another study (Gray, 1993) some parents indicated that people in their work
environment were unaware of their child’s ASD as they did not want to be pitied by their
work colleagues, and that they wished to obtain equal chances of promotion. Lee (2009)

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explained that decisions to hide something important from people in parents’ work
environment created more stress for them. These difficulties experienced by parents of
children with ASD within their work place could potentially prevent parents to access and
attend support groups. In study 2 , 24% of parents mentioned that work demands and work
shifts were factors likely to trigger the most anxiety and depression for them. These findings
reveal that the work circumstances of parents of children with ASD can have a detrimental
impact on their ability to access and attend PSG, even if they would benefit greatly from such
groups.
8.6.3.4. Parents’ personal needs as a possible barrier to group access/attendance .
Smith and colleagues (1994) conducted semi -structured interviews to identify some of
the barriers to group access and attendance for parents of children with ASD. Their results
indicated that participants left a PSG for the following reasons: 1) Parents felt they no longer
needed it; 2) The PSG was run at an inconvenient time; 3) Parents felt they had nothing in
common wi th other parents in the group; 4) The PSG was run too far from their home . Smith
and colleagues (1994) found that a minority of parents (11%) were willing to travel from 10
to 90 minutes to attend a PSG while 28% of parents were willing to travel 20 minute s to
attend a PSG, suggesting that traveling time was a decisive factor in parents’ willingness to
attend a PSG. Furthermore, the amount of attendance required was also a decisive factor,
with 44% of parents preferring to meet one time per month, 39% of pa rents preferring to
meet two times per month and 6% of parents wishing to meet one time per week.
Participants were asked if child care and transportation needed to be considered for
them to attend a PSG. About 34% of parents mentioned that they had no ca r and would have
to rely on public transport or they would have to borrow a car so they could attend a PSG.
Parents also reported that the experience or credentials of the group leader would influence

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their attendance to a PSG, with 33% of parents mentioni ng that their first choice would be to
have a counselling professional as a group leader. Smith and colleagues (1994) identified that
68% parents found PSG most helpful when their child was doing “better”. This finding seems
quite significant as support gr oups are often geared toward parents who are experiencing a
crisis. This information suggests that PSG might focus primarily on parents who are settled
into a routine and who need ongoing support. Findings from study 1 indicated that parents
who had no car, parents who home -schooled their child , and single parents were unable to
attend the support groups or found it challenging to attend most sessions. In study 2 , a
majority of participants asked for the semi -structured interview to be conducted in their home
environment, indicating that this option was most suited to parents’ need at the time.
Clifford and Minnes (2013) gave online questionnaires to 149 parents of children with
ASD to measur e their beliefs about support groups. The findings explained that parents who
are more likely to be well supported by t raditional in -person PSGs will: 1) tend to cope by
seeking emotional and instrumental support and by planning and doing something about t heir
problem ; 2) believe that su pport groups will be beneficial; and 3) believe that they will not
have difficulties attending PSGs. However, those parents who have not tried a support group
and believe them to be beneficial may be well supported by alterna tives to traditional groups
such as online support groups, which will alleviate many of the difficulties associated with
attending in -person group meetings.
Finally, there is a subgroup of parents, including those who have tried support groups
and not fou nd them beneficial and those who do not seek support as a form of coping, who
would be better supported by other methods. These parents might also prefer a parent -to-
parent support model or a parent -led group, which would be more focused on bonding with
other parents. These results indicate the need to determine through discussion with parents
what they feel would be the best support match for them. If a parent has expressed an interest

250
in participating in a support group, it will be important to determine his/her goals for the
support group.
To assist parents, it is therefore important to take into account physical constraints,
allowing them to choose the right course of care for their child from among the different
types of support available. In addition, parents of a child with ASD need help to identify the
right professionals for undertaking the administrative procedures for obtaining the financial
support they deserve. The information provided to families should therefore focus on the
procedures for acce ssing services (Divan et al., 2012; Siklos & Kerns, 2006) as well as the
pathology itself and how it can be managed (Auert, Trembath, Arciuli, & Thomas, 2012;
Mockett, Khan, & Theodosiou, 2011; Papageorgiou & Kalyva, 2010; Siklos & Kerns, 2006).
8.6.3.5. Family demographics as a possible barrier to group access/attendance .
Mandell and Salzer (2007) appear to have published the only quantitative study of
predictors of support group use for parents of children with ASD. This study exa mined
family demographics (i.e., age and gender of child, ethnicity, household income, parent
education, marital status, and geographic location), health systems interaction s (i.e., clinician
referral to group and child inpatient stay in hospital) and child's clinical characterist ics (i.e.,
specific ASD diagnosis; co -morbid di agnoses of mental retardation, hearing impairment,
seizures, self -injurious behaviour, sleep problems, aggression, and severe language deficits)
as predictors of PSG use. The authors found that about two -third s of the sample had
participated in a PSG (defined as "support advocacy group for parents") at some time, and
parents who were involved in support groups had higher household incomes and educational
attainments, were more likely to be in two -parent familie s, and were less likely to be African –
American than parents who were not involved. The authors reported that this finding is
consistent with the literature on support group use in other populations, which generally finds

251
that participants tend to be in hig her income brackets, more educated, married, living in
suburban areas, and white (Katz et al., 2002).
The demographic profile of the majority of participants who attended studies I and II
consisted of a majority of married mothers with a mean age of 45 yea rs, having one child
diagnosed with ASD. A majority of participants had a TAFE education level and worked.
Half of the participants had a second child diagnosed with a disorder. Over half of the
participants reported their average household gross income to be $81,000 and above per year.
Participants reported spending on average approximately $6,305 per year on expenses for
their child with ASD. These findings reveal that participants with different demographic
background might find it more challenging to ac cess and attend PSG and seem to be in line
with previous research findings (Katz et al., 2002; Mandell & Salzer, 2007). As a
consequence, future research might want to investigate the needs of different demographic
groups of parents of children with ASD to identify the different support needs they might
have .
8.6.4. Parents’ concerns e xpressed in study 2 .
A variety of concerns were reported by parents of children with ASD during the
implementation of study 2 . The qualitative analysis performed in study 2 indicated that 10
major themes were identifi ed from participants’ responses. Major themes were classified
under two different categories, referred to as “child -focused” or “environment focused”
themes . Child -focused themes encompassed information that rela ted specifically to some
aspect of the child’s ASD diagnosis or the outcomes (to the child’s daily functioning) of that
diagnosis. Child -focused themes included parent concerns centred on the following issues:
areas of diagnostic impairment and the presenc e of restricted repetitive behaviour patterns
and fixated interests; their children’s’ ability to make age -appropriate transitions across the

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lifespan; their children’s’ mental well -being, physical health and sleep patterns; and their
children’s’ aggressiv e and/or self -injurious behaviour. Environment focused themes
encompassed information that related specifically to external factors present in parents’ lives
that were not linked to their ASD child but related to their personal environment.
Environment -focused themes included parent concerns on the following issues: some aspect
of their financial circumstances; some aspect of the difficulties encountered within the school
environment; work deadlines and/or other work demands; child’s current difficulties;
concerns for the child’s future; and the most helpful and the least helpful types of support
received by parents of children with ASD.
Some of the major themes identified in study 2 have been reported on in previous
research findings. For instance, the the me 1 of the child -focused major themes labelled as
“Aggressive B ehaviours” was also reported on in previous research findings , revealing that
the challenging behaviours of children with ASD can be a significant source of stress for
parents (Myers et al. , 2009). Therefore, providing parents with skills to manage challenging
behaviours is essential (Benson & Karlof, 2009; National Research Council, 2001, p. 153).
Not surprisingly, nearly all “best practice” ASD programs provide parents with the
opportunity to learn and practice specialis ed skills they can use to teach their children with
ASD, and some even make this a requirement of program participation (National Research
Council, 2001, p. 153).
An environment -focused major theme identified in study 2 labelle d as theme 5:
“School” included information on parents’ concerns about some aspect of their child’s
difficulties within their school environment . This theme included concerns related to areas of
their child’s classroom learning behaviour difficulties plus some of the difficulties
encountered with in the school environment ( i.e., teachers’ limited understanding of child
difficulties and miscommunication with teachers). As the child enters the school system, the

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IDEIA (the Individuals With Disabilities Education Improvement Act) ensures the right to
appropriate education for children with disabilities such as ASD, but there is often tension
between parents and schools with regard to how the child’s needs are met (Mulick & Butter,
2002). Thus, parents inc reasingly find themselves playing an advocacy role on behalf of their
child. This can have both positive and negative effects on parents, leading to increased stress
and decreased quality of life, in some cases, and feelings of confidence, empowerment, and
increased support, in others (Nachshen & Jamieson, 2000).
High -quality parent –professional and parent –educator relationships are central to
meeting the needs of families with a child with ASD ( Carter, 2003; Rao & Kalyanpur, 2002).
While parent involvemen t is the single biggest predictor of satisfaction with school services
for parents of children with ASD (Renty & Roeyers, 2006), and parent –professional
collaboration is strongly and consistently related to parent al sense of self efficacy in
managing their child’s condition (Reich, Bickman, & Heflinger, 2004), families express a
desire for interactions with educators and other professionals to be more responsive and
collaborative (Renty & Roeyers, 2006; Stoner & Angell, 2006). However, the findings from
study 2 reveal that a majority of parents had a challenging relationship with teachers and
schools and these parents believed that teachers did not have a clear vision of their child’s
future, which triggered anxiety in some parents.
Another major environment -focused theme identified in study 2 was labelled as theme
1: “Concerns for C hild” and included information on parent s’ concerns about their chi ld’s
current difficulties ( i.e., poor self -control and their child’s performance at school) plus
parent s’ concer ns about their child’s future ( i.e., child post -school independence, poor child
expression of needs, and continued care of child post parent death). Past research identified
that transitions continue to occur throughout the child’s school years, as the chi ld moves from
preschool to school age, and from building to building (Marcus , Kunce, & Schopler, 2005).

254
At each transition, the family is likely to take on new advocacy roles, sharing their
knowledge about the child with professionals from each new classro om and system, while
building new relationships and partnerships.
Transition planning for adulthood for a child with ASD is easily one of the most
confusing and emotionally draining times for parents. While transition planning is
recommended to begin by ag e 16 (IDEIA, 2004), parents report little guidance in the process
(Carbone, Behl, Azor, & Murphy, 2010). Schools typically perform the first steps in
transition planning, but this process often does not fully address family needs. As families
move into the adult service system, they are challenged with navigating complex eligibility
requirements and funding streams, as well as dealing with new service systems, new
providers, and a loss of previously held, familiar supports. Families can also easily become
overwhelmed by the new factors that they need to consider: post -secondary educational
options, employment and volunteer opportunities, community living, sexuality, and
guardianship.
Findings from study 2 explained that parents’ mental health ( i.e., anxiety and
depression) could be negatively impacted upon due to the 10 major themes identified during
the semi -structured interviews. The findings showed that a majority of the themes mentioned
by parents were environment -focused themes, which questions the efficacy of PSG purely
focused on the ASD child symptoms as triggering anxiety and depression in parents of
children with ASD (Altiere & von Klu ge, 2009; Lyons et al., 2010). Therefore , these findings
support further that there is a need for research i n PSG for parents of children with ASD to
target interventions designed to train parents to manage the adverse emotional and
psychological experiences they themselves confront on a day -to-day basis that might not be
child -focused necessarily.

255
9. Recommendations for Effective Delivery of Support for Parents of Children with
ASD .
Study 1 aimed to investigate two research questions by exploring the effects of four
models for delivering group -based support to parents of childr en on parent mental st ate (i.e.,
anxiety and depression), parent resilience, and parenting satisfaction. The first aim of study 1
was to identify whether the delivery of parent -focused intervention was capable of assisting
parents to manage adverse emotional and psychological s tates they experienced. The second
aim of study 1 was to identify if parent -focused intervention was more effective in creating
positive changes in parents’ emotional and psychological states than child -focused
approaches. The results obtained in study 1 found overall no significant changes in anxiety
and depression across the three different groups of participants and across time (Pre –
Intervention, Post -Intervention, FU1, FU2, and FU3). Furthermore, results from study 1
indicated that parents’ attendance was intermittent and likely to cease after brief access to
support.
Consequently, the results obtained in study 1 proposed that the identification of the
factors that might cause parents of children with ASD to access support services minimally or
irregula rly was identified as being crucial to remediating those factors and create support
service approaches that meet specific parent needs and encourage their consistent attendance.
Study 2 aimed to gather information on the models of support delivery that wou ld most likely
meet the individual needs of participants at a future time. The bias towards examining child
features as being predictive of poor parent mental health was addressed via emphasis on
exploring a greater range of parent -oriented factors in study 2.
This section of the thesis aims to provide recommendations on how support might be
delivered to parents of children with ASD in a more efficient manner. The limitations of

256
studies 1 and 2 will be discussed in the sub -sequent section of Chapter 9. And finally, the
clinical implications for studies 1 and 2 will be discussed.
9.1. Recommendations on how support might be delivered to parents of children
with ASD .
It was hypothesised that improved retention rates reflected the researchers’ ability to
make home visits, but there were still a number of participants who did not participate in
study 2 . Possible reasons for the dropout rates in parents of children with ASD include
embarrassment or stigma, busy schedules and inability to make time to participate in research
projects, and more personal resources spent on finding information that would assist their
diagnosed child. A recent study that used an adapted depression therapy called problem –
solving education (PSE) offered six 3 0-minute workbook sessions to mothers and PSE
supplemental school services to the child if they were not already enrolled in an early
intervention program ; a 91% retention rate was reported from use of this strategy (Feinberg et
al., 2014). A combination o f a shorter meeting period and additional incentive of
supplemental services for the child may have been a factor in getting higher retention rates
both in study 1 and in study 2 .
Another area that could be focused on in further studies is to increase enga gement
with participants by making training support groups more geared toward the participants’
most pressing problems about their child. We could rearrange training support groups ’
interventions to focus on problems directly related to helping their child with AS D, such as
helping them problem -solve on how to receive services for their child and family (advocacy
training). Focusing support training groups on parents’ current stressors and challenges may
increase retention, especially if it is being provide d by a trainer who has experience with
ASD. This approach is believed to further engage participants and increase attendance.

257
The information shared by parents of children with ASD during the semi -structured
interviews proposed a wide variety of needs incl uding: access to quality information, access
to coordinated services within the community, understanding and managing challenging
behaviours in their child, gaining support that will be most helpful from friends and family
members, high -quality parent –teacher/school collaboration, and transition/long -term planning
supports. All these different needs can be addressed through the utilisation of several models.
Findings from study 1 indicated that g roup support training models were not necessarily the
most eff icient way to assist parents of children with ASD. Findings from study 2 showed that
parents of children with ASD felt most anxious or depressed in different circumstances and
that not only child -focused but also environment -focused factors could impact th eir well –
being negatively. Consequently, a systematic process could be beneficial to determine which
parent support models could be most helpful to parents , depending on the main difficulties or
concerns parents have for their child.
In order to identify the specific needs of parents of children with ASD, the semi –
structured interview used for study 2 could be used as part of an intake process that would
gather enough information to profile parents’ needs. The semi -structured interview used in
study 2 gathers information on child -focused factors and information on environment -focused
factors that could negatively impact on parents’ well-being . The answers gathered from this
type of interview could provide a clinician with detailed information on areas of need for
parents of children with ASD, helping clinicians avoid making assumptions about the needs
of this parent group. A variety of models to assist parents of children with ASD have been
developed from the responses that participants have shared in study 2 . The first model
consists of giving the opportunity to parents to access in -home or out -of-home support. The
second model consists of identifying t he most prominent areas of need described by parents,

258
by classifying the most anxiety – and depression -triggering fa ctors in the two categories of
“child -factors” or “environment -factors”.
Parents of children with ASD are challenged by a host of issues across the life span.
The utilisation of the semi -structured interview created for study 2 would allow c linicians to
identify t he major areas of need in parents’ life circumstances and to decide what type of
treatment would be most helpful for parents in address ing the concerns they mentioned
during the interview. Some parents might benefit more from individ ual treatment than they
would benefit from group treatment. If clinicians were to use a group treatment option,
several factors should be taken into consideration such as: identify parents in terms of their
child’s autism severity (high functioning, modera te functioning and low funct ioning) , in
terms of their child’s age group (toddler, child, adolescent, and adult), and in terms of their
child’s gender (male or female). Furthermore, group treatment options should be offered to
parents who wish to gain and share experiences with other individuals. Individual ising
treatment plans and using more flexible approaches to tailor the content offered within group
treatment options would be most beneficial to parents of children with ASD and would
potentially remedi ate some of the difficulties encountered around attrition rates of
participants attending support groups .
9.2. Limitations of studies 1 and 2 .
Some limitations were detected in stud ies 1 and 2. The first limitation that should be
acknowledged consists of the small sample size for both studies and, as a consequence ,
statistical testing was fraught by limited cell sizes. However, none of the major conclusions
are based on non -significant differences , suggesting that the samples were satisfactory for the
purposes they were designed to achieve, but replication would enable greater generalisation
of these results . Also, it should be noted that this cohort of participants may not adequately

259
represent the larger population of parents of children with ASD , although this is an almost –
universal limitation of human research . Second, this study had no control group of mothers of
children with ASD who did not receive training in FBATG, STG or CG , and therefore the
possible effect of extraneous variables cannot be ruled o ut. Future work with the
implementation of parent support groups might consider randomization of caregivers to
FBATG, STG or CG. Third, in order to further increase retention rates, additional strategies
(Feinberg et al., 2014) might be explored to see whe ther (for example) linking up with
caregivers when the diagnosis is made to establish a system of care, listing parent support as
part of the wider resources for respite care, using trainers with experience working with
children with ASD, and focusing the support training groups on ASD -specific issues , are all
possible ways of increasing retention .
9.3. Clinical implications for studies 1 and 2.
Parents of children with ASD respond differently to treatment options available to
them, depending on their circumstances at the time. Given that parents fulfil a range of roles
for their child with ASD including advocate, teacher, collaborator, and decision maker
(Stoner & Angell, 2006), it is perhaps unsurprising that a family -centred approach to care
increase s parent satisfaction with care and leads to more favourable outcomes (Law et al.,
2003). Addressing the issues faced by parents of children with ASD has been a challenge
because the issues are broad, and they evolve over the course of the child’s developm ent and
across the life cycle of the family (Stoner et al., 2005; White & Hastings, 2004). The success
with which professionals are able to address issues faced by parents of children with ASD
may have critical implications for child and family outcomes, a s parent s’ perception of low
levels of support or having unmet needs is associated with higher levels of emotional distress
(Hare, Pratt, Burton, Bromley, & Emerson, 2004).

260
Lack of access to appropriate information, both early on and as the child ages, is a
significant barrier to adjustment for families of a child with ASD (Mitchell & Sloper, 2002;
Turnbull, Turnbull, Erwin, & Soodak, 2006). Even when parents find quality information to
address the child ’s and family ’s needs in one developmental phase, they often must start the
search over again because the types of information that are required vary o ver the life span of
the child. The Internet offers a wealth of information not previously available to parents, but
parents often have difficulty discriminati ng high -quality information among the
overwhelming amount of information that they find online (Carter, 2009). Misinformation
about ASD on the web is abundant (Jordan, 2010), and parents can waste precious time.
Access to coordinated services is another ch allenge. ASD is a complex diagnosis,
often requiring interventions by multiple providers and agencies. Many families experience
difficulties in identifying the services and supports they need, determining where they can
find these services, and readily acc essing those (McLennan et al., 2003). Once services are
identified, navigating the service systems requires knowledge, time, and persistence, since
families rarely have a care coordinator to assist them through the process. Kogan and
colleagues’ (2008) rev iew of the National Survey of Children with Special Health Care
Needs found that children with ASD were more likely than children with other special health
care needs to have unmet needs, and families with ASD also received fewer family support
services. F or example, poor access to respite care is a problem that often restricts the family’s
activities (Bromley et al. , 2004). Few providers are trained to care for a child with ASD, and
the lack of available respite may lead to community restriction that disco nnects the family
from broader sources of support. One possible means of addressing this problem is to
increase access to training in ASD for care work ers. A recent study demonstrated preliminary
success in training undergraduate students in characteristics of ASD and behavio ural analysis
to provide respite care for families with a child with ASD (Murphy & Verden, 2013).

261
The results obtained from stud ies 1 and 2 highlight the complexit ies of parents’ life
circumstances. Study 1 found that participants in the CG who attended the same three
sessions as participants attending the FBATG and participants attending the STG rated
similarly the value for the three sessions from the FBATG and th e value for the three sessions
from the STG . Therefore, study 1 highlights the advantages of combining the three most
valuable sessions from the FBA TG and the three most valuable sessions from the STG . Also,
study 1 indicates that participants know which s essions they find to be most helpful/
satisfying and can help a researcher identify clearly which sessions would likely benefit most
parents. Study 2 identified that parents experience a lower number of child-focused factors
difficulties than they experience environment -focused factors difficulties. Such results could
assist clinicians early in the treatment (at the intake phase) to identify which difficulties
parents are experiencing at the time of the semi -structured interview so they can identify
which treatment option s parents would benefit mo st from. Stud ies 1 and 2 both demonstrate
that multiple treatment options should be considered when working with parents of children
with ASD and that no two families will need the same assist ance. As a cons equence,
individual -based treatment plans would be most likely to benefit parents of children with
ASD.

262
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APPENDIX A
Diagnostic Criteria for Autism Spectrum Disorder (ASD) – DSM -5 (2013)
A. Persistent deficits in social communication and social interaction across multiple
contexts, as manifested by the following, currently or by history (examples are illustrative,
not exhaustive, see text):
1. Deficits in social -emotional reciprocity, ranging, for example, from abnormal social
approach and failure of normal back -and-forth conversation; to reduced sharing of interests,
emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for
example, from poorly integrated verbal and nonverbal communication; to abnormalities in
eye contact and body language or deficits in understanding and use of gestures; to a total lack
of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for
example, from difficulties adjusting behavior to suit various social contexts; to difficulties in
sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted repetitive
patterns of behavior (see Table A1).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at
least two of the following, currently or by history (examples are illustrative, not exhaustive;
see text):

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1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple
motor stereotypies, lining up toys or flipping objects, echolalia, idiosyn cratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal
nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid
thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong
attachment to or preoccupation with unusual objects, excessively circumscribed or
perseverative interest).
4. Hyper – or hyporeactivity to sensory input or unusual interests in sensory aspects of the
environment (e.g., apparent indifference to pain/temperature, adverse response to specific
sounds or textures, excessive smelling or touching of objects, visual fas cination with lights or
movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive
patterns of behavior (see Table A1).
C. Symptoms must be present in the early developmental period (but m ay not become
fully manifest until social demands exceed limited capacities, or may be masked by learned
strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other
important areas of current functi oning.
E. These disturbances are not better explained by intellectual disability (intellectual
developmental disorder) or global developmental delay. Intellectual disability and autism

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spectrum disorder frequently co -occur; to make comorbid diagnoses of autism spectrum
disorder and intellectual disability, social communication should be below that expected for
general developmental level.
Note: Individuals with a well -established DSM -IV diagnosis of autistic disorder, Asperger’s
disorder, or pervasive developmental disorder not otherwise specified should be given the
diagnosis of autism spectrum disorder. Individuals who have marked deficits in social
communication, but whose symptoms do not otherwise meet criteria for autism spectrum
disorder, should be evaluated for social (pragmatic) communication disorder.
Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental,
or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp.
119-120, for definition) ( Coding note: Use additional code 293.89 [F06.1] catatonia
associated with autism spectrum disorder to in dicate the presence of the comorbid catatonia.)

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Table A1. Severity levels for autism spectrum disorder
Severity Level Social Communication Restricted, Repetitive
Behaviors
Level 3
"Requiring very substantial
support” Severe deficits in verbal and
nonverbal social
communication skills cause
severe impairments in
functioning, very limited
initiation of social
interactions, and minimal
response to social overtures
from others. For example, a
person with few words of
intelligible speech who rarely
initiates interaction and,
when he or she does, makes
unusual approaches to meet
needs only and responds to
only very direct social
approaches Inflexibility of behavior,
extreme difficulty coping
with change, or other
restricted/repetitive behaviors
markedly i nterferes with
functioning in all spheres.
Great distress/difficulty
changing focus or action.

Level 2
"Requiring substantial
support” Marked deficits in verbal and
nonverbal social
communication skills; social
impairments apparent even
with supports in place;
limited initiation of social
interactions; and reduced or
abnormal responses to social Inflexibility of behavior,
difficulty coping with
change, or other
restricted/repetitive behaviors
appear frequently enough to
be obvious to the casual
observer and interfere with
functioning in a variety of

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overtures from others. For
example, a perso n who
speaks simple sentences,
whose interaction is limited
to narrow special interests,
and how has markedly odd
nonverbal communication. contexts. Distress and/or
difficulty changing focus or
action.

Level 1
"Requiring support” Without supports in place,
deficits in social
communication cause
noticeable impairments.
Difficulty initiating social
interactions, and clear
examples of atypical or
unsuccessful response to
social overtures of others.
May appear to have
decreased interest in social
interactions. For example, a
person who is able to speak
in full sentences and engages
in communication but whose
to- and-from conversation
with others fails, and whose
attempts to make friends are
odd and typically
unsuccessful. Inflexibility of behavior
causes significant
interference with functioning
in one or more contexts.
Difficulty switching between
activities. Problems of
organization and planning
hamper independence.

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APPENDIX B
The Explanatory Statement (ES) Sent to Participant for Study 1
Project Title: Evaluation of Three Group Support Models Developed for Parents of Children
with Autism Spectrum Disorder
Project Number: RO-1494
Date: 13th of April 2012
My name is Aude Etournaud and I am conducting research under the supervision of
Professor Vicki Bitsika in the Department of Counselling and Behaviour Management at
Bond University. The research is conducted for a thesis for a Doctorate of Counselling.
The aim of this research is to examine some ways we might support parents of
children with Autism Spectrum Disorder to cope with the demand s they face in their day -to-
day lives. We have developed three models for delivering group -based parent support and
will be randomly allocating parents to one of these groups. Some parents will participate in a
'wait list' group and receive subsequent acce ss to material derived from all three models. This
method for allocating parents to a group means that we will have no prior knowledge of
which groups parents will attend and cannot make a commitment to placing parents in a
preferred group. All group model s will require parents to attend six sessions (of 60 to 80
minutes duration each) over six consecutive weeks. In order to help us evaluate the
effectiveness of each group model, we will be collecting information at five points in time,
these being: two wee ks before you begin the group; on the last session of the group; one
week after completion of the group, four weeks after completion of the group; eight weeks
after the completion of the group you attended; and twelve weeks after the completion of the
group you attended. We will be collecting information via survey and you will be asked to

346
answer questions on your child's difficulties and the ways in which you handle these, the
satisfaction you derive from parenting your child, your own mental health status (for instance
feelings of depression and anxiety), and strategies you use in coping with the demands you
confront.
We are aware that that attending groups and helping us gather information will
require a large time commitment from you and would like to em phasize that your
participation in this study is completely voluntary and you may withdraw at any time without
risking any adverse consequences. If you chose to withdraw from the study then any gathered
information will be immediately destroyed. All the da ta collected in this study will be treated
with complete confidentiality, viewed only by the two researchers and reported in relation to
group trends. These data will be stored in a secured location for a five year period in
accordance with the guidelines set out by the Bond University Human Research Ethics
Committee.
It is anticipated that the information collected during this study will be used to
develop group -based support programmes which meet the specific personal and parenting
needs of parents with a child or children on the autism spectrum.
If you have any queries as a result of participating in this research or would like to
receive a summary of overall research findings, please contact Professor Vicki Bitsika via
email on vbitsika@staff.bond.edu.au or telephone on (07) 5595 4142.

347
Should you have any complaints concerning the manner in which this research is
conducted please contact the Bond University Human Research Ethics Committee
quoting the Project Number: R01494. Contact details are as follo ws:
Ethics Officer – Complaints
Bond University Human Research Ethics Committee
C/O Bond University Research and Consultancy Services.
Level 2 Central Building
Bond University, Gold Coast, 4229
Tel: +61 7 5595 4194 Fax: +61 7 5595 1120 Email: buhrec(5)bond .edu.au

We thank you for taking the time t o assist us with this research.
Yours sincerely,

Professor Vicki Bitsika, Aude Etournaud,
Principal Researcher, Student Researcher,
Faculty of Humanities & Social Sciences, Faculty of Humanities & Soc ial Sciences ,
Bond University, Bond University,
Gold Coast, Q LD., 4229 Gold Coast, QLD., 4229

348
APPENDIX C
Example of the Email of Confirmation Sent to Participants
Dear (parent's name),
This is a confirmation e -mail with regards to your participation in the Skills Training Group.
You have agreed to take part in 8 consecutive sessions (90 minutes per session) that will be
held on Wednesday mornings from 9.30am until 11.00am .
The first session will be held on Wednesday the 14th of August at 9.30am . The facilitator will
be waiting for you to arrive in the HSS foyer from 9.15am, and she will take you to the room
in which every session will be held.
A map with car park directions and indications on the location of the HSS foyer has been
attached to this e -mail for your convenience. Pl ease do not hesitate to contact the facilitator if
you need any help finding your way around campus.
Your participation to this research project is markedly appreciated.
Best wishes,
Aude Etournaud , PhD Candidate
Researcher at the Centre for Autism Spectru m Disorders (CASD)
Teaching Fellow
Counselling and Behaviour Management
Faculty of Humanities and Social Sciences
Bond University
aetourna@bond.edu.au
(07) 5595 2502

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APPENDIX D
Participant Consent Form
I hereb y consent to participate in the research project titled Evaluation of Three Group
Support Models Developed for Parents of Children with Autism Spectrum Disorder
(Protocol Number RO-1494 ).
I have read and understood the Explanatory Statement and acknowledg e that I have been
provided with the opportunity to ask any questions I might have regarding this study.
I understand my participation in this study will involve my participation in a parental group
training that will explore my understanding of Autism Spe ctrum Disorder and the coping
skills that can be used to deal with challenging situations.
I understand that all information collected by the researchers will be treated with complete
confidentiality and that no details which could identify me will be repo rted on. I also
understand that my participation in this study is voluntary and that I can choose to withdraw
at any stage in the research process without incurring any adverse consequence.

NAME OF PARTICIPANT:
______________________________ (please print )

SIGNATURE: __________________ DATE: _______________

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APPENDIX E
Example of Participant Evaluation Form
Session 1 Participant Evaluation

We are interested in your feedback and invite you to evaluate all six sessions of the group
programme. This evaluation will involve you in telling us how valuable you found each
session in relation to topic and practice strategies. We will also invite you to tell us the
reasons why you might have found a particular aspect of a session most valuable to you.

We ask that you record your feedback in the table below. Some of your responses will be
recorded using the seven -point scale shown here (please avoid ma king a mark between
numbers) and other response will require you to write a short statement.

1 2 3 4 5 6 7

Not Valuable Somewhat Valuable Very Valuable
Session Feature Your Feedback
Please use the scale to rate how valuable the
overall session was to you.
1—2—3—4—5—6—7
Please use the scale to rate how valuable the
material on “ myths” about autism was to you.
1—2—3—4—5—6—7
Please use the scale to rate how valuable the
material on behavioural concepts and terms
was to you.
1—2—3—4—5—6—7
Please use the scale to rate how valuable the
material on behaviour being internal (thoughts
and feelings) and external (actions and
statements) to you.

1—2—3—4—5—6—7
Please use the scale to rate how valuable the
material on the Functional Behaviour
Assessment model was to you .
1—2—3—4—5—6—7
Briefly tell us which specific aspect of the
session was most valuable to you.

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APPENDIX F
An Example of the Email Sent to P articipants for Follow -Up Assessments
Dear (parent's name),

The link in this e -mail will allow you to have access to the survey for you to complete as part
of the third evaluation of the parent group sessions.

Please click on the link provided to you below, it will take you to the survey. It is very
important tha t you use the identification number below to start the survey (it is the same
number that you were allocated in session) and that you answer all questions within the
survey.

If you have any difficulties completing the online survey, please contact me and I will assist
you in completing it. We ask that you complete the survey by the end of this week, Sunday
the 1st of December .

Link: https://www.surveymonkey.com/s/Parent_Training_Models_FollowUp2_Post_Session
_Evaluation3
Identification number:

Thank you very much for your continued support and participation in the research.

Best wishes,

Aude Etournaud , PhD Candidate
Researcher a t the Centre for Autism Spectrum Disorders (CASD)
Teaching Fellow
Counselling and Behaviour Management
Faculty of Humanities and Social Sciences
Bond University
aetourna@bond.edu.au
(07) 5595 3030

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APPENDIX G
Concepts /Ideas for Each S ession of the FBATG
Session
Number Session Title Skills Taught
One Core features of ASD and its
impact on child functioning Main Skill : Demystifying some common
myths about autism and key terms and
defining key terms and concepts.
Session Topics/Strategies : The Functional
Behavioural Assessment (FBA) model
introduced:
 Define behaviour;
 Internal versus external behaviours;
 Form descriptions and function
descriptions of behaviour;
 Exercise to practice identification of
overt and cover t behaviours.

Two Learning how to define child’s
problematic behaviours Main Skill : Introduction to functions of
problematic behaviours.
Session Topic/Strategies : Define child’s
problematic behaviours and i dentify
functions of behaviours:
 Explain positive and negative
reinforcement;
 Present some functions of
behaviours;
 Present information on behavioural
repertoire;
 Exercise to practice the recording of
problematic behaviours, using the
A-B-C table.

353
Session
Number Session Title Skills Taught
Thre e Identifying the antecedents for
child’s difficult behaviours Main Skill : Introduction to events or
antecedents that might precede child’s
behaviours.
Session Topics/Strategies : Identifying the
different types of antecedents that act as
triggers for the behaviour to occur:
 Investigation of pre -behaviours
events;
 Going through the A -B-C table to
identify familiar patterns in child’s
behaviours;
 Exercise to classify child’s
antecedents;
 Introduction to the use of a table to
record pre -behaviour events and
antecedents to child’s unwanted
behaviour.

Four Identifying the valued outcomes of
child’s difficult behaviours Main Skill : Strategies to use to investigate
function(s) of a problematic behaviour.
Session Topics/Strategies : Analys ing the
effects of the an tecedents, consequences,
setting events and valued outcomes :
 Review of antecedents,
consequences, and setting events;
 Introduction to the term valued
outcomes and its meaning;
 Group discussion on child’s
unwanted behaviour;
 Exercise practice to complete entire
A-B-C table.

354
Session
Number Session Title Skills Taught
Five Discussing parental ability to
understand, cope, and even prevent
their child from engaging in
difficult behaviours Main Skill : Strategies to help your child
learn appropriate replacemen t behaviour.
Session Topics/Strategies : Group
discussions raised on building capacity to
understand, cope, and even prevent child’s
challenging behaviours:
 Eliminating known triggers where
possible;
 Introducing alternative positive
events;
 Introducing alternative positive
events that act as cues or prompts
for new coping behaviour;
 Introduce consequent behavioural
strategies;
 Manipulate the situation that
triggers the unwanted behaviour;
 Intervention planning.

Six Reviewing the FBATG programme
and its effect on parents’
understanding of their child’s
problematic behaviours Parents were presented with the list of the
skills they were thought during the 5
previous group sessions.
Parents had the opportunity to choose the
skills that they would like to review in the
last session.

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APPENDIX H
Concepts/Ideas for Each Session of the STG
Session
Number Session Title Skills Taught
One Identifying
social/professional support
received by parents of
children with ASD Main Skill : Introduction to goal setting exercise and
its functions .
Session Topics/Strategies : Identify different types of
social support (formal, informal and professional
support) :
 Identify parent’s access to these supports
 Identify the amount of support they receive
 Parent’s satisfaction with the support they
receive
 Did the support help them to achieve some
goals they have set for themselves?

Two Identifying and discussing
beliefs that parents find
helpful in accepting their
child’s impairment Main Skill : Identify any barriers, resources or
methods that can be used to fulfil your goals .
Session Topics/Strategies : Train emotionally
focused palliative coping skills, especially when
participants have to deal with unchangeable and
uncontrollable stressors
 Parent’s personal beliefs ;
 Are your beliefs helpful in coping with your
child’s autism?
 How your beliefs might be helpful to cope
with your child’s impairment .

356
Session
Number Session Title Skills Taught
Three Identifying and discussing
the positive emotional
experiences in parents’ life Main Skill : Identification of positive experiences in
specific environments/setting events .

Session Topics/Strategies : Assessment and
recording of positive emotional experiences
experienced by parents :
 How often do parents experience positive
emotional experiences?
 The most common types of positive
emotional experiences ;
 In which settings do parents experience
positive emotional experiences ?

Four Introducing parents to
coping strategies used by
other parents of children
with ASD to remain
optimistic Main Skill : Definition of the term “Optimism” and
the positive outcomes which occur when one is high
on optimism .
Session Topics/Strategies : Identification of
techniques used by parents to remain optimistic and
identification of positive outcomes experienced
through optimism :
 Use existing social supports more
effectively ;
 Focus on stressful events that are
changeable ;
 Focus on best options available ;
 Positive reframing or positive imagery .

357
Session
Number Session Title Skills Taught
Five Identifying active coping
strategies that assist
parents in handling
difficult situations related
to their child’s ASD Main Skill : Active coping strategies that can be
useful for parents of a child with ASD (Bandura’s
self-efficacy model) .
Session Topics/Strategies : Some coping strategies
that might be efficient :
 View daily problems as challenges ;
 Problem solving strategies ;
 Planning activities in advance.
The four major sources of self -efficacy according to
Bandura:
1. Enactive mastery ;
2. Vicarious modelling ;
3. Social persuasion ;
4. Psychological responses .

Six Reviewing the STG
programme and assessing
parents’ self -confidence Parents were presented with the list of the skills they
were thought during the 5 previous group sessions.
Parents had the opportunity to choose the skills that
they would like to review in the last session.

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APPENDIX I
Concepts/Ideas for Each Session of the C G
Session
Number Session Title Skills Taught
One Identifying and discussing
beliefs that parents find helpful
in accepting their child’s
impairment Main Skill : Identify any barriers, resources or
methods that can be used to fulfil your goals .
Session Topics/Strategies : Train emotionally
focused palliative coping skills, especially
when participants have to deal with
unchangeable and uncontrollable stressors :
 Parent’s personal beliefs ;
 Are your beliefs helpful in coping with
your child’s autism?
 How your beliefs might be helpful to
cope with your child’s impairment .

Two Introducing parents to coping
strate gies used by other parents
of children with ASD to remain
optimistic Main Skill : Definition of the term “Optimism”
and the positive outcomes which occur when
one is high on optimism .
Session Topics/Strategies : Identification of
techniques used by parents to remain
optimistic and identification of positive
outcomes experienced through optimism :
 Use existing social supports more
effectively ;
 Focus on stressful events that are
changeable ;
 Focus on best options available ;
 Positive reframing or positive imagery .

359
Session
Number Session Title Skills Taught
Three Identifying active coping
strategies that assist parents in
handling difficult situations
related to their child’s ASD Main Skill : Active coping strategies that can
be useful for parents of a child with ASD
(Bandura’s self -efficacy model) .
Session Topics/Strategies : Some coping
strategies that might be efficient :
 View daily problems as challenges ;
 Problem solving strategies ;
 Plannin g activities in advance.
The four major sources of self -efficacy
according to Bandura:
5. Enactive mastery ;
6. Vicarious modelling ;
7. Social persuasion ;
8. Psychological responses .

Four Learning how to define child’s
problematic behaviours Main Skill : Introduction to functions of
problematic behaviours.
Session Topic/Strategies : Define child’s
problematic behaviours and identify functions
of behaviours:
 Explain positive and negative
reinforcement;
 Present some functions of behaviours;
 Present information on behaviou ral
repertoire;
Exercise to practice the recording of
problematic behaviours, using the A -B-C
table.

360
Session
Number Session Title Skills Taught
Five Identifying the valued outcomes
of child’s difficult behaviours Main Skill : Strategies to use to investigate
function(s) of a problematic behaviour.
Session Topics/Strategies : Analys ing the
effects of the antecedents, consequences,
setting events and valued outcomes :
 Review of antecedents, consequences,
and setting events;
 Introduction to the term val ued
outcomes and its meaning;
 Group discussion on child’s unwanted
behaviour;
 Exercise practice to complete entire A –
B-C table.
Six Discussing parental ability to
understand, cope, and even
prevent their child from
engaging in difficult behaviours Main Skill : Strategies to help your child learn
appropriate replacement behaviour.
Session Topics/Strategies : Group discussions
raised on building capacity to understand,
cope, and even prevent child’s challenging
behaviours:
 Eliminating known triggers where
possible;
 Introducing alternative positive events;
 Introducing alternative positive events
that act as cues or prompts for new
coping behaviour;
 Introduce consequent behavioural
strategies;
 Manipulate the situation that triggers
the unwanted behaviour;
 Inter vention planning.

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APPENDIX J
Attendance Patterns for Participants in all Three Groups
The boxes coloured in green indicate that participants attended the sessions, the boxes
coloured in white indicate that participants missed one to two sessions of the training group
and the boxes coloured in red indicate that participants did not attend three to six sessions of
the training group. This colour coding has been applied for Table E1, Table E2 and Table E3
presented below.
Table J 1
FBATG Attendance Patterns for Participants Sessions
Participants’
Number Session
One Session
Two Session
Three Session
Four Session
Five Session
Six
01
02
03
04
05
06
07
08

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09
10
11
12
13
14
15
16

Table J 2
STG Attendance Patterns for Participants Sessions
Participants’
Number Session
One Session
Two Session
Three Session
Four Session
Five Session
Six
17
18
19
20
21

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22
23
24
25
26
27
28
29
30
31
32

Table J 3
CG Attendance Patterns for Participants Sessions
Participants’
Number Session
One Session
Two Session
Three Session
Four Session
Five Session
Six
33
34

364
35
36
37
38
39
40
41
42
43
44
45
46
47
48

365
APPENDIX K
ES Sent to Participant for Study 2
Project Title: Tailored Support for Parents of Children with ASD : Impacts of Mental Health,
Social Support, Child Features, and Parent -Child Relationship.
Project Number: 0000015207
Date: 17th of April 2015
My name is Aude Etournaud and I am conducting research under the supervision of Professor
Vicki Bitsika, in the Department of Counselling and Behaviour Management at Bond
University. I am currently completing a PhD.

The aim of this research is to gather information about your experiences, the barriers you face,
and th e assets you have as a parent of a child with ASD . We are specifically interested in
examining which factors might have more of an impact on your well -being.

If you choose to take part in this study, we will require you to answer an interview. You will
be contacted by the researcher to plan a meeting. The interview will last approximately one
hour and a half. There will be a series of topics that will be looked at throughout the
interview. At the end of the interview, you will be asked to answer a few ques tionnaires.

Participation in this study is completely voluntary and you may withdraw at any time without
risking any adverse consequences. If you chose to withdraw from the study then any gathered

366
information will be immediately destroyed. All the data collected in this study will be treated
with complete confidentiality, viewed only by the two researchers and reported in relation to
group trends. These data will be stored in a secured location for a five year period in
accordance with the guidelines set out by the Bond University Human Research Ethics
Committee.

It is anticipated that the information collected during this study will be used to work out the
best methods for parent support which might not necessarily be face -to-face parent training
model . In fact, our research might provide a basis for developing guidelines for a flexible and
parent specific models to deliver support.

If you have any queries as a result of participating in this research or would like to receive a
summary of overall resea rch findings, please contact Professor Vicki Bitsika via email on
vbitsika@staff.bond.edu.au or telephone on (07) 5595 4142.

Should you have any complaints concerning the manner in which this research is
conducted please contact the Bond University Human Research Ethics Committee.
Contact details are as follow –
Ethics Officer – Complaints
Bond University Human Research Ethics Committee
C/O Bond University Research and Consultancy Services.
Level 2 Central Building

367
Bond University, Gold Coast, 4229
Tel: +61 7 5595 4194 Fax: +61 7 5595 1120 Email: buhrec@bond.edu.au

We thank you for taking the time to assist us with this research.
Yours sincerely,

Professor Dr Vicki Bitsika, Teaching Fellow Aude Etournaud,
Principal Researcher, Student Researcher,
Faculty of Society and Design , Faculty of Society & Design,
Bond University, Bond University,
Gold Coast, QLD., 4229 Gold Coast, QLD., 4229

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APPENDIX L
Participant Written C onsent for Study 2
PARTICIPANT CONSENT FORM

I hereby consent to participate in the research project titled “Tailored Support for Parents
of Children with ASD : Impacts of Mental Health, Social Support, Child Features, and
Parent-Child Relationship” (Project Number: 0000015207 ).

I have read and understood the Participant Information Sheet and acknowledge that I have
been provided with the opportunity to ask any questions I might have regarding this study.

I understand my par ticipation in this study will involve me in answering a series of interview
questions on topics including parent anxiety, parent depression, parent social support, parent
self-efficacy and child behaviour and functioning. I also understand that I will be c ompleting
four surveys designed to gather information on parent anxiety, parent depression, parent -child
relationship and child ASD behaviour.

I authorise the researcher to audiotape my responses to interview questions and understand
that, subsequent to t he interview, my responses will be typed in an anonymous transcript and
(when this process is completed) the audiotape of the interview will be destroyed.

I understand that all information collected by the researchers will be treated with complete
confide ntiality and that no details which could identify me will be reported on. I also
understand that my participation in this study is voluntary and that I can choose to withdraw
at any stage in the research process without incurring any adverse consequence.

If you are willing to be involved would you please sign the form below that acknowledges
that you have read the Participant Information Sheet, you understand the nature of the study
being conducted and the risks and likely benefits of participation in thi s study, and you give
permission for the research to be conducted.

369
Yours sincerely,

Professor Dr Vicki Bitsika, Principal Researcher, Faculty of Society and Design,
Bond University

Teaching Fellow Aude Etournaud, Student Researcher, Faculty of Society and Design, Bond
University

Consent for participation in the interview :
NAME OF PARTICIPANT:
______________________________ (please print)
SIGNATURE: __________________ DATE: _______________

Consent for the interview to be recor ded:
NAME OF PARTICIPANT:
______________________________ (please print)
SIGNATURE: __________________ DATE: _______________

370
APPENDIX M
TRANSCRIPT OF INTERVIEW

Interviewer: Date: Place:
Person being interviewed:
Mother Father Other (state relationship to child) … ………………………………………

ASD CHILD BIOGRAPHICAL DETAILS:
1. Gender of this child is Male/Female :

2. Child’s age now:

3. Was this child officially diagnosed with an ASD? Yes No

4. Does this child have any brothers or sisters? Yes No

371
5. Do any of the child’s brothers or sisters also have a diagnosed disorder? Yes No

6. If Yes , provide the name of the disorder and the child’s age.

Disorders: Child’s Age (in years) :
Disorder: Child’s Age (in years) :

Disorder: Child’s Age (in years) :
Disorder: Child’s Age (in years) :
PARENT BIOGRAPHICAL DETAILS:
1. Parent’s ID:
2. Parent’s age:
3. Parent’s gender : Male Female
4. What is your employment status? Full-Time Part -Time Stay at Home
5. If unemployed, did you have to stop work ing to take care of your child? Yes No

372
6. How would you classify your household financial comfort, using figures of your average household’s gross income?
7. 20,000 to 40,000 41,000 to 60,000 61,000 to 80,000 81,000 and above
1 2 3 4
8. How much of the household gross income goes to expenses for your child with an ASD?
A. PARENT ANXIETY CHECK

1. Are you feeling anxious right now? Yes No

2. If yes, on a scale from 1 (not anxious) to 10 (extremely anxious), how anxious are you feeling?

3. What are the situations in your daily life which cause you to feel most anxious?

1 2 3 4 5 6 7 8 9 10
Not anxious Moderatel y Extremely anxious

373
B. PARENT DEPRESSION CHECK

1. Are you feeling depressed right now? Yes N o

2. If yes, on a scale from 1 (not depressed) to 10 (extremely depressed), how anxious are you feeling?
3.

3. What are the situations in your daily life which cause you to feel most depressed?

C. PARENT SOCIAL SUPPORT

a. EMOTIONAL SUPPORT

1. How emotionally supported do you feel by your family?

1 2 3 4 5 6 7 8 9 10
Not depressed Moderately Extremely depressed

1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

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2. How emotionally supported do you feel by your friends?

b. PRACTICAL SUPPORT

3. How much help do you receive from family in caring for your child/children with an ASD?

4. How much help do you receive from friends in caring for your child/children with an ASD?

5. In thinking about the support you receive from family and friends, can you describe the support which is most helpful to you?

6. In thinking about the support you receive from family and friends, can you describe the support which is least helpful to you ?

1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

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c. FINANCIAL SUPPORT
7. Do you receive any resources for your child with an ASD from the gov ernment or other organisations? Yes No
8. Do you have family members who have given/do give you financial support? Yes No
9. Do you have friends who have given/do give you financial support? Yes No

d. INFORMATIONAL SUPPORT
10. Are you able to access information to help you assist your child with an ASD? Yes No
11. If Yes, Can you describe the information you have access to?
12. Are you happy with the information you have been able to access? Yes No

D. PARENT SELF -EFFICACY

1. Can you tell me about a concern you currently have about your child that you are currently dealing with?

2. On a scale from 1 (= not at all confident) to 10 (=completely confident), rate how confident you are in managing and resolvin g this difficulty?

1 2 3 4 5 6 7 8 9 10
Not at all confident Somehow confident completely confident

376
3. Are there any concerns you might have about your ASD child’s future? Yes No
4. Describe your major concerns you might have about your ASD child’s f uture.
5. Do you feel confident in your capacity to manage your own stress and personal difficulties? Yes No
6. On a scale from 1 (= not at all confident) to 10 (=completely confident), rate how confident are you in managing your own str ess and
personal difficulties?

47. Do you feel confident in your capacity to manage the needs of your other child/children?
Ye

7. On a scale from 1 (= not at all confident) to 10 (=completely confident), rate how confident are you in managing your child (ren)’s needs?

8. Is there anything else you would like to mention?

1 2 3 4 5 6 7 8 9 10
Not at all confident Somehow confident completely confident

1 2 3 4 5 6 7 8 9 10
Not at all confident Somehow confident completely confident

377
E. CHILD BEHAVIOUR AND FUNCTIONING
a. AGGRESSIVE BEHAVIOUR

1. Does your child ever use aggressive behaviour when interacting with other pe ople (e.g., adults, siblings…)? Yes No
2. If yes, how often is your child violent or aggressive towards other people?

3. Can you give me some specific examples of the types of things your child might say and/or do when (s)he is behaving aggressively?

b. REPETITIVE BEHAVIOUR
4. Does your child ever do or say the same thing repeatedly or does (s) he make any unusual ha nd/body movements repeatedly?
Yes No
5. If yes, how often does your child uses repetitive behaviour?
1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

1 2 3 4 5 6 7 8 9 10
Not at all Sometimes All the time

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6. Can you give me some examples of the repetitive statements, activities or actions you child might engage in?

c. SLEEP BEHAVIOUR

7. Does your child have any difficulty falling and/or staying asleep? Yes No
8. If yes, how often does your child experience sleep difficulties?
1 2 3 4 5 6 7 8 9 10
Not at all Somet imes All the time

9. Does your child take any medications to help with his/her sleep difficulties? Yes No
10. If yes, which medication does your child take?

d. SCHOOL BEHAVIOUR
11. Can you tell me a little about your relationship with your child’s teacher and school in general?

12. What are some of the school -based situations which, when they happen, can have a negative impact on your well -being?

13. Do you think that your child’s teacher has a clear vision for his/her long -term future?

379

14. Is there anything else you would like to mention before we conclude the interview?

Prompts Used by the Interviewer throughout the Interview
1. Prompt from interviewer so participant gives a more detailed answer for the question.

2. Anything else you can think of?

3. Are there any other concerns that you might have that you can think of?

380
APPENDIX N
Example of Process to Extract Codes
Talking to people about ASD child (ID 28)
Giving more attention to my ASD child than to my other child (ID 01)
Child struggling at school (ID 08)
Anything that has to do with ASD child in general (ID 10) (ID 23) (ID 30) (ID 37) (ID 39) (ID 42)
(ID 12)
Progress of ASD child (ID 10) (ID 16) (ID 31) (ID 35)
ASD child social abilities (ID 11) (ID 16 ) (ID 35)
Getting ASD child ready to go to school in the mornings (ID 19) (ID 29) (ID 36) (ID 09) (ID 43)
Getting ASD child to do anything (ID 19) (ID 36) (ID 29)
Getting ASD child to go to sleep (ID 19) (ID 36) (ID 12)
ASD child engaging in unpredictable or difficult behaviour (ID 23) (ID 29) (ID 32) (ID 37) (ID 38)
(ID 44) (ID 02)
Transitions for ASD child (ID 29) (ID 09) (ID 43)
Health of ASD child (ID 44) (ID 41)
ASD child engaging in self -harming behaviour (ID 25)

RELATED TO ASD
Not being able to affo rd things for my child (tuition, sports team, activities) (ID 01)
Being treated poorly by other people because of ASD child’s behaviours (ID 01)
Having to leave work to get ASD child from school (ID 10)
Expenses for ASD child’s activities (ID 16)
Picking u p and dropping off ASD child (ID 17)
Worrying about ASD child’s future (ID 18)
Transporting ASD child to a destination (ID 18)
Making sure child’s anxiety level is low (ID 20)
Having to reschedule work to assist spouse with ASD child (ID 21)

381
School mentioning that lateness in the mornings was officially reported on (ID 29)
Anything that has to do with the school (ID 29) (ID 38) (ID 02)
Cleaning child’s faeces around the house (ID 37)
Working through homework with child (ID 40) (ID 12)
Friends’ percep tions of child’s ASD (ID 02)
Getting a phone call from the school (ID 11) (ID 39) (ID 02) (ID 03)
Scared of being out in public with ASD child (ID 30) (ID 31) (ID 43) (ID 02)

NOT RELATED TO ASD
Frightening situations (e.g., road rage or vicious dogs) (ID 28)
Depression diagnosis of my other child (ID 28)
Health of my family (ID 28) (ID 21) (ID 35)
Being a single parent (ID 01) (ID 18) (ID 33) (ID 37)
Parent feeling exhausted (ID 01)
Not having friends (ID 01)
Having debt collectors crawling over us (ID 08)
Experienced bankruptcy (ID 01) (ID 08) (ID 16) (ID 37)
Financial difficulties (ID 08) (ID 16) (ID 33) (ID 37) (ID 44)
Work commitments (ID 10) (ID 25) (ID 27) (ID 40) (ID 12)
Having to pay bills (ID 16) (ID 18) (ID 27)
Husband’s plans change because of wo rk (ID 17)
Working different shifts (ID 17) (ID 18) (ID 21)
Having a husband who presents like my ASD children (ID 20)
Organising appointments while having to work (ID 21)
The condition of the house (ID 21) (ID 38) (ID 03) (ID 37)
Worrying about money (ID 21) (ID 23) (ID 27) (ID 44) (ID 20)
Traveling time getting to work every day (ID 27)
Time management (ID 29) (ID 31) (ID 33)

382
Personal health issues (ID 32) (ID 41)
Not being able to afford another car (ID 37)
Having a spouse that works from home (ID 42)
Making sure there is enough money in the bank (ID 20)

383
APPENDIX O
Example of Thematic Map

Events that cause parents to feel most anxious.
1
ASD CHILD SYMPTOMS/
DIFFICULTIES
ASD Symptoms/Difficulties:
Progress of ASD child (X4); ASD child social
abilities (X3); getting child to do anything (X3);
anything that has to do with child (X7).
14 Parents Responded
2
FINANCIAL
Direct Financial Demands/Stressors:
Experience of bankruptcy (X4); financial
difficulties (X5); having to pay bills (X3);
worrying about money (X5).
11 Parents Responded
3
SCHOOL
Child School Difficulties:
Getting child ready to go to school (mornings)
(X5).
School Difficulties with Child:
Anything that has to do with school (X3);
getting a phone call from the school (X4).
10 Parents Responded
4
WORK
Work Demands:
Work commitments (X5); work different shifts
(X3).
08 Parents Responded