Intentional Personal Development of Autistic Individuals
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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 ii 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. iii 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. iv 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. v 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 vi 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