The lived experiences of adolescents with autism spectrum disorder

364 Pages·2017·2.89 MB·English

University of Wollongong
Research Online
University of Wollongong Tesis Collection
University of Wollongong Tesis Collections
1954-2016
2014
Te lived experiences of adolescents with autism
spectrum disorder: a personal constructivist and
family systems approach
Elizabeth Kate Cridland
University of Wollongong
Unless otherwise indicated, the views expressed in this thesis are those of the author and do
not necessarily represent the views of the University of Wollongong.
Recommended Citation
Cridland, Elizabeth Kate, Te lived experiences of adolescents with autism spectrum disorder: a personal constructivist and family
systems approach, Doctor of Philosophy thesis, School of Psychology, University of Wollongong, 2014. htps://ro.uow.edu.au/theses/
4303
Research Online is the open access institutional repository for the University of Wollongong. For further information contact the UOW Library:
Faculty of Social Sciences

The Lived Experiences of
Adolescents with Autism Spectrum Disorder:
A Personal Constructivist and Family Systems Approach

Elizabeth Kate Cridland
Bachelor of Psychology (Hons)

This thesis is presented in partial fulfilment of the requirements for the award
of Doctor of Philosophy (Clinical Psychology) in the School of Psychology,
University of Wollongong

August 2014
CERTIFICATION

I, Elizabeth Cridland, declare that this thesis, submitted in partial fulfilment of the
requirements for the award of Doctor of Philosophy (Clinical Psychology), in the
School of Psychology, University of Wollongong, is wholly my own work unless
otherwise referenced or acknowledged. The document has not been submitted for
qualifications at any other academic institution.

Elizabeth Cridland
August 2014
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ABSTRACT

Individuals with Autism Spectrum Disorder (ASD) experience persistent and
significant social communicative impairments, as well as restricted and
repetitive behaviours and/or interests. There is currently a dearth of literature
investigating the experiences of adolescents with ASD, despite research
findings indicating adolescence is a particularly challenging period for these
individuals. In addition to the significant influence of ASD on the individual,
having a family member with the condition can have chronic and pervasive
effects on individual family members and the family unit as a whole.
However, research investigating the experiences of families who have an
adolescent member with ASD is scarce.
The overall aim of this thesis is to investigate the lived experiences of
adolescents with ASD and their families. More specifically, the studies
explore the positive and challenging aspects of adolescence; the coping
strategies used by family members; and the distribution of roles and
responsibilities within the family and their impact on individual and family
functioning. A qualitative approach was used to interview multiple family
members, including adolescents with ASD, mothers, fathers, and adolescent
siblings.
The thesis is informed by Family Systems and Personal Constructivist
frameworks. Chapters 2 and 3 examine these frameworks in relation to
understanding adolescents with ASD and their families. Conceptual and
methodological components of these frameworks were used to guide
subsequent qualitative investigations, which are presented in Chapters 4-7.
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More specifically, Chapters 4 and 5 focus on the experiences of adolescent
boys and girls with ASD, respectively; Chapter 6 investigates the
experiences of parents; and Chapter 7 identifies issues pertinent to
adolescent neurotypically developing siblings. The findings of these
qualitative investigations highlight a range of adolescent-specific issues,
covering physical, cognitive, emotional, social, and sexual domains, which
may provide guidance to clinicians, researchers, and family members
supporting adolescents with ASD and their families.
Chapter 8 utilises Personal Constructivist methodology to investigate the
dependency patterns of adolescents with ASD. Findings indicate that the
adolescents had various ways of dispersing their dependencies amongst
resources and differed in the types of support most utilised. Additionally, by
including family members, the study was able to investigate family
awareness of the adolescents’ preferences. The findings presented in this
chapter offer a novel approach to understanding the experiences of families
living with ASD, given the adoption of the combined Family Systems and
Personal Constructivist framework.
The thesis concludes with a synthesis of the key findings of the conceptual
and qualitative investigations. It considers research limitations of the studies
conducted and discusses implications for future research and clinical
practice. Overall, the thesis findings address an important gap in literature
and have the potential to make significant contributions to the field of
clinical psychology by directly informing clinical interventions for
adolescents with ASD and their families.
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KEY ABBREVIATIONS

Asperger’s Syndrome ….………………………………..…….………. AS
Autism Spectrum Disorder …………………………………..……… ASD
Family System ..………….………………………….…….…..……….. FS
High Functioning Autism ..……………………………...….……….. HFA
Interpretative Phenomenological Analysis ……………………………. IPA
Neurotypically developing ..…………….…………………………… NTD
Personal Construct Theory ..…………..…………….……..………… PCT

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“Sometimes when you are in a crowded room the best way to be heard is to yell.
But the best way to be understood is to explain yourself.”

1
Carly Fleischmann

1
Fleishmann, A., & Fleishmann, C. (2012). Carly’s Voice: Breaking Through Autism. New York, Touchstone.
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ACKNOWLEDGEMENTS

The importance of understanding adolescents with ASD within their family system is
reverberated throughout this thesis. So too is it necessary to recognise the system within
which this thesis was grounded ~

This thesis would not have been possible without the willingness and openness of the
families who participated. Thank-you for trusting me to share your very personal stories-
your experiences have moved me both professionally and personally.

I will be forever grateful to my research supervisors - Peter, Sandra, and Chris. Thank-you
for believing in the value of this research and providing me with the support necessary to
undertake this project. I feel humbled to have worked closely with each of you; your
individual and combined knowledge and experience helped me at every stage.

Thank-you to the various individuals and organisations who assisted throughout the
development and implementation of the research. In particular, thank-you to Bruce Rowles
and Raeleigh Kerr (ASPECT South Coast School); Mark Lucas (Dapto High School), and
Ann Preston and Greg Carey (Edmund Rice College) for assisting in participant
recruitment; the Jones family for feedback during pilot testing; Tania Sterchow for
involvement in member checking; Beverly Walker and Gerard Stoyles for providing
conceptual input; and the School of Psychology administration staff for general assistance
and support.

Thank-you also to my peers; you were the perfect combination of sounding-boards,
mentors, and friends. Thank-you especially to Nat, Kye, Rach, Alisha, Laura, and Andrea.

Finally, thank-you to my family for your support in everything I do. Mitch, in particular,
thank-you for believing in me and standing by me while I signed-up for another four years
of uni! You are my rock.

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TABLE OF CONTENTS
Certification ............................................................................................................................ i
Abstract .................................................................................................................................. ii
Key abbreviations ................................................................................................................. iv
Acknowledgements .............................................................................................................. vi
Table of contents ................................................................................................................. vii
List of tables ......................................................................................................................... xi
List of figures ...................................................................................................................... xii
Thesis publications ............................................................................................................. xiii
Thesis manuscripts under review ....................................................................................... xiv
Statement of verification ..................................................................................................... xv

Chapter 1: Introduction
1.1 Preamble ............................................................................................................. 1
1.2 Autism Spectrum Disorder ................................................................................. 1
1.3 Conceptual framework ........................................................................................ 5
1.4 Thesis aims .......................................................................................................... 9
1.5 Thesis structure ................................................................................................. 10
1.6 Significance and originality .............................................................................. 11
1.7 References......................................................................................................... 13

Chapter 2: Family-focused autism spectrum disorder research: A review of the utility of
family systems approaches
2.1 Abstract ............................................................................................................ 24
2.2 Introduction...................................................................................................... 25
2.3 Family-focused ASD research to date and its limitations ................................ 26
2.4 Common theoretical framework ...................................................................... 29
2.5 Implications for clinical support services ........................................................ 35
2.6 Implications for future research ....................................................................... 37
2.7 Conclusion ....................................................................................................... 43
2.8 References ........................................................................................................ 45

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Chapter 3: Understanding high functioning autism during adolescence: A personal
construct theory approach
3.1 Abstract ............................................................................................................. 55
3.2 Introduction ....................................................................................................... 56
3.3 Overview of PCT .............................................................................................. 57
3.4 Adolescence, HFA, and PCT ............................................................................ 59
3.5 Supporting adolescents with HFA and their families ...................................... 73
3.6 Conclusion ....................................................................................................... 76
3.7 References ........................................................................................................ 78

Chapter 4: The perceptions and experiences of adolescent boys with autism spectrum
disorder: A personal construct psychology and family systems perspective
4.1 Abstract ............................................................................................................. 86
4.2 Introduction ...................................................................................................... 87
4.3 Aims ................................................................................................................. 89
4.4 Method ............................................................................................................. 90
4.5 Results .............................................................................................................. 94
4.6 Discussion ...................................................................................................... 103
4.7 Strengths and Limitations .............................................................................. 112
4.8 Clinical recommendations .............................................................................. 112
4.9 Conclusion ..................................................................................................... 115
4.10 References ...................................................................................................... 116

Chapter 5: Being a girl in a boys’ world: Investigating the experiences of girls with autism
spectrum disorders during adolescence
5.1 Abstract .......................................................................................................... 124
5.2 Introduction..................................................................................................... 125
5.3 Study Aims ..................................................................................................... 127
5.4 Method ............................................................................................................ 128
5.5 Results ............................................................................................................ 132
5.6 Discussion ....................................................................................................... 145
5.7 Limitations and Recommended Future Research ........................................... 149
5.8 Clinical Recommendations ............................................................................. 150
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