Intentional personal development of autistic individuals

534 Pages·2010·1.6 MB·English

by  Ljiljana Vuletic

Living in two worlds: Intentional personal development of
autistic individuals
by
Ljiljana Vuletic
A thesis submitted in conformity with the requirements
for the degree of Doctor of Philosophy
Graduate Department of Human Development and Applied Psychology
Ontario Institute for Studies in Education
University of Toronto
© Copyright by Ljiljana Vuletic 2010
Living in two worlds: Intentional personal development of autistic
individuals
Ljiljana Vuletic
Doctor of Philosophy
Graduate Department of Human Development and Applied Psychology
University of Toronto
2010

Abstract
Despite an increased interest in autism over the last decades, little research exists about life
outcomes of autistic adults. The earliest follow-up studies of autistic individuals suggested that
self-understanding and conscious efforts to change could be crucial factors in successfully
reaching good life outcomes. However, these initial suggestions have not been further
investigated. Therefore, this exploratory qualitative study examined the lives of eight high-
functioning autistic adults aged 25 to 63, from their own perspectives, through in-depth, semi-
structured interviews, to consider the relation of self-understanding and conscious efforts to
change—in this study referred to as intentional personal development—to their life outcomes.
All participants demonstrated a level of self-understanding beyond what would be predicted by
current theoretical models of autism. Their self-understanding was assessed through participants’
self-definitions, meaning-making of life experiences, and understanding of emotions. In their
self-definitions, the participants emphasized their abilities and personality characteristics, rather
than their disabilities. For their self-defining memories, as indicators of their meaning making of
life experiences, most participants chose positive experiences related to their personal
development. Their autobiographical accounts revealed that most participants possess a large
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repertoire of emotion words, supporting an understanding of emotions. When a good life
outcome is defined traditionally—as being employed, living independently, and having social
relationships—this study, contrary to expectations, did not provide overwhelming evidence for
the significant role of intentional personal development in achieving this. However, when a good
life outcome is defined in terms of achieving personal excellence, then the study did provide
confirmation of intentionality as important to attaining good life outcomes. This study therefore
suggests that traditional life outcome measures are inadequate for assessing the life outcomes of
autistic individuals because such measures do not take into account the individuals’ own sense of
satisfaction with themselves and with their lives.

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Acknowledgments
I wish to express my gratitude to many people who contributed directly to the successful
completion of this study:
To the participants in this study:
Thank you for sharing your thoughts, dreams, and memories. And thank you for reading
the interview transcripts and the study report and commenting on them. Without you this
study would not be possible.
To my family; to my husband Djordje Sredojevic and son Peter Sredojevic:
Thank you for your love, support and understanding. Without you this study would not be
possible.
Special thanks to both for help with the computer, and another special thanks to Peter for
reading and editing numerous versions of this thesis, for help with piloting the interview
and interview transcribing.
To my supervisor Michel Ferrari:
Thank you for your guidance, support, encouragements, and wise advice. Without you
this study may not have been possible.
To my other committee members, Patricia Howlin, Kate McLean, and Rick Volpe:
Thank you for your helpful comments and constructive criticism, which helped me
improve the final version of this thesis.
To Matthew Bennett, my colleague from Australia:
Thank you for reading this thesis and commenting on it.

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To Susan London McNab:
Thank you for being my friend, for your support, and for reading most of this thesis and
generously helping me improve it.
To Masa Culum,
Thank you for your help with interview transcribing.
To Teodor Mihail, Jovanka Culum, Zora Radovanovic, and Emiko Koyama:
Thank you for answering my interview questions and your help with polishing my final
interview.
To Emiko Koyama, Marina Stoilkovic, and Queenie Lo:
Thank you for being my friends, and for your support, encouragements, as well as
reading parts of the thesis and/or thesis proposal and helping me improve it.
To Culum family, Radovanovic family, Jovanovic family, Mihail family, Joan Moss, and Eva
Filippova:
Thank you for your support and inspiration.
To my sister Milena Vuletic and her family and to my aunt Vida Veskovic:
Thank you for your support and encouragements.
To Dijana Plut:
Thank you for being my friend all these years, for your support, encouragement, and wise
advice.
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Table of Contents
Abstract ........................................................................................................................................... ii 
Acknowledgments .......................................................................................................................... iv 
Table of Contents ........................................................................................................................... vi 
List of Tables ................................................................................................................................ xii 
List of Appendices ....................................................................................................................... xiii 
Chapter 1 Introduction ................................................................................................................. 1 
1  What is Autism? ......................................................................................................................... 2 
1.1  Psychiatric Perspective ....................................................................................................... 3 
1.1.1  Historical Background ............................................................................................ 3 
1.1.2  Contemporary Views: DSM-IV ............................................................................. 11 
1.1.3  Summary and New Directions .............................................................................. 17 
1.2  Psychological Perspectives ............................................................................................... 18 
1.2.1  Historical Background .......................................................................................... 19 
1.2.1.1  Autism as a Basic Defect of the Ego ...................................................... 19 
1.2.1.2  The “Refrigerator Mother” Theory of Autism ....................................... 21 
1.2.1.3  The Behavioral Approaches to Autism .................................................. 23 
1.2.2  Contemporary Views: The Basic Cognitive Deficit Theories of Autism ............. 25 
1.2.2.1  The Theory of Mind Deficit Hypothesis ................................................ 26 
1.2.2.2  The Executive Dysfunction Hypothesis ................................................. 28 
1.2.2.3  The Weak Central Coherence Hypothesis .............................................. 29 
1.2.3  Summary and New Directions .............................................................................. 31 
1.3  Parental Perspectives ........................................................................................................ 32 
1.3.1  Summary ............................................................................................................... 34 
1.4  First-Person Perspectives on Autism ................................................................................ 34 
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1.4.1  Summary and New Directions .............................................................................. 49 
2  Life Outcome for Autistic Individuals ..................................................................................... 50 
2.1  Clinical Reports ................................................................................................................ 51 
2.2  Long-Term Empirical Outcome Studies ........................................................................... 54 
2.3  Studies of Quality of Life of High-Functioning Autistic Adults ...................................... 60 
2.4  Autobiographies of Autistic Adults .................................................................................. 63 
3  Intentional Personal Development ........................................................................................... 69 
3.1  Role of Intentional Personal Development in Successful Life Outcomes ........................ 70 
3.2  Intentional Personal Development in Autism ................................................................... 71 
3.2.1  Self-Understanding in Autism .............................................................................. 71 
3.2.1.1  Theoretical Accounts .............................................................................. 72 
3.2.1.2  Empirical Evidence ................................................................................ 75 
3.2.1.3  Autobiographical Evidence .................................................................... 78 
3.2.2  Future Orientation ................................................................................................. 79 
3.3  Summary ........................................................................................................................... 80 
4  Rationale, Aims, and Research Questions of This Study ......................................................... 82 
Chapter 2 Method ....................................................................................................................... 84 
5  Approach and Design ............................................................................................................... 84 
5.1  Qualitative Approach ........................................................................................................ 84 
5.2  Case Study Design ............................................................................................................ 86 
6  Participants ............................................................................................................................... 88 
7  Data Sources ............................................................................................................................. 92 
7.1  Personal Documents .......................................................................................................... 92 
7.2  Interviews .......................................................................................................................... 93 
7.2.1  Demographic Information Interview .................................................................... 93 
7.2.2  Autobiographical Interviews ................................................................................. 93 
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7.2.2.1  Self-Understanding ................................................................................. 94 
7.2.2.2  Autism .................................................................................................... 95 
7.2.2.3  Life Satisfaction ...................................................................................... 95 
7.2.2.4  Meaning Making of Past Experiences .................................................... 96 
7.2.2.5  Future Orientation .................................................................................. 97 
7.2.3  Follow-Up Interviews ........................................................................................... 98 
8  Procedure .................................................................................................................................. 98 
8.1  Data Collection ................................................................................................................. 98 
8.1.1  Personal Documents .............................................................................................. 98 
8.1.2  Interviews .............................................................................................................. 99 
8.2  Data Analysis and Interpretation .................................................................................... 101 
8.2.1  Transcribing ........................................................................................................ 101 
8.2.2  Categorizing Data ............................................................................................... 102 
8.2.3  Individual Profile Construction (Within-Case Analysis) .................................... 103 
8.2.4  Group Profile Construction (Cross-Case Analyses) ........................................... 110 
8.3  Researcher-As-Instrument Statement (Positionality Statement) .................................... 110 
8.4  Summary of Validity Procedures .................................................................................... 114 
Chapter 3 Analysis and Interpretation ................................................................................... 116 
9  Portrait of Pierre and Sketches of Other Participants ............................................................. 116 
9.1  Introductory Descriptions ............................................................................................... 116 
9.1.1  Pierre ................................................................................................................... 116 
9.1.2  Other Participants ................................................................................................ 118 
9.1.2.1  Mike ...................................................................................................... 119 
9.1.2.2  Orville ................................................................................................... 121 
9.1.2.3  Sarah ..................................................................................................... 123 
9.1.2.4  Alan ...................................................................................................... 126 
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9.1.2.5  Geoff ..................................................................................................... 129 
9.1.2.6  Howard ................................................................................................. 131 
9.1.2.7  Jimmy ................................................................................................... 133 
9.2  Pierre’s Interview Report ................................................................................................ 134 
9.2.1  Pierre’s Self-Portrait ........................................................................................... 134 
9.2.1.1  Being Autistic ....................................................................................... 135 
9.2.1.2  Self-Evaluation ..................................................................................... 136 
9.2.2  Pierre’s Current-Life ........................................................................................... 136 
9.2.2.1  Employment and Financial Situation ................................................... 137 
9.2.2.2  Day to Day Life and Interests ............................................................... 137 
9.2.2.3  Social life .............................................................................................. 138 
9.2.2.4  Adjustment to the World ...................................................................... 139 
9.2.3  Pierre’s Life Experiences .................................................................................... 139 
9.2.3.1  Being Different ..................................................................................... 139 
9.2.3.2  Getting Diagnosed With Asperger Syndrome ...................................... 141 
9.2.3.3  The Most Significant Life Experiences ................................................ 142 
9.2.3.4  Most Disappointing Experience ........................................................... 146 
9.2.3.5  Unhappiest Experience ......................................................................... 148 
9.2.3.6  The Happiest Experience ...................................................................... 149 
9.2.3.7  Turning Points ...................................................................................... 150 
9.2.3.8  Most Important Decisions .................................................................... 151 
9.2.3.9  Learning from Experience .................................................................... 152 
9.2.3.10  Talking about Life Experiences with Other People ............................. 152 
9.2.3.11  Significant Influences ........................................................................... 153 
9.2.4  Pierre’s Future Orientation ................................................................................. 153 
9.2.4.1  Endings of the Book about Pierre ......................................................... 153 
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9.2.4.2  Goals and Wishes ................................................................................. 154 
9.2.4.3  Living in Another World ...................................................................... 156 
9.2.4.4  Better Life ............................................................................................. 156 
9.3  Interpretive Summary ..................................................................................................... 157 
9.3.1  On Pierre as a Person .......................................................................................... 157 
9.3.1.1  On Pierre’s Self-Definitions ................................................................. 157 
9.3.1.2  On Pierre’s Other Self-Descriptions: Strengths and Self-Likes ........... 210 
9.3.1.3  On Pierre’s Other Self-Descriptions: Weaknesses and Self-Dislikes .. 212 
9.3.1.4  On Pierre as an Autistic Person ............................................................ 222 
9.3.1.5  On Pierre’s Self-Evaluation .................................................................. 232 
9.3.1.6  Summary ............................................................................................... 235 
9.3.2  On Pierre’s Current Life ..................................................................................... 237 
9.3.2.1  On Pierre’s Living Arrangements and (Un)Employment..................... 237 
9.3.2.2  On Pierre’s Day-to-Day Life ................................................................ 241 
9.3.2.3  On Pierre’s Social Life ......................................................................... 249 
9.3.2.4  On Pierre’s Self-Evaluation of His Adjustment to the World .............. 262 
9.3.2.5  On Pierre’s Life Satisfaction ................................................................ 268 
9.3.3  On Pierre’s Life Experiences .............................................................................. 271 
9.3.3.1  On Pierre’s Realization of Being Different .......................................... 271 
9.3.3.2  On Pierre’s Getting the Diagnosis ........................................................ 277 
9.3.3.3  On Pierre’s Reaction to Getting the Diagnosis ..................................... 282 
9.3.3.4  On Pierre’s Most Significant Life Experiences .................................... 292 
9.3.3.5  On Turning Points in Pierre’s Life ....................................................... 331 
9.3.3.6  On Pierre’s Most Important Decisions ................................................. 342 
9.3.3.7  On Pierre’s Learning from Experience ................................................. 350 
9.3.3.8  On Pierre’s (Not) Talking with Others about His Life Experiences .... 352 
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