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The Loss of Asperger Syndrome: an Exploration of Its Effects on Self-Identity

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The Loss of Asperger Syndrome: an Exploration of Its Effects on Self-Identity University of Calgary PRISM: University of Calgary's Digital Repository Graduate Studies The Vault: Electronic Theses and Dissertations 2017 The loss of Asperger Syndrome: An exploration of its effects on self-identity Huynh, Stephany Huynh, S. (2017). The loss of Asperger Syndrome: An exploration of its effects on self-identity (Unpublished master's thesis). University of Calgary, Calgary, AB. doi:10.11575/PRISM/28239 http://hdl.handle.net/11023/3831 master thesis University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission. Downloaded from PRISM: https://prism.ucalgary.ca UNIVERSITY OF CALGARY The loss of Asperger Syndrome: An exploration of its effects on self-identity by Stephany Huynh A THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE GRADUATE PROGRAM IN EDUCATIONAL PSYCHOLOGY CALGARY, ALBERTA MAY, 2017 © Stephany Huynh 2017 Abstract In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), Asperger Syndrome (AS) has been eliminated and integrated into a new Autism Spectrum Disorder (ASD) diagnostic framework. The loss of AS has social implications for people who self-identify and derive personal meaning from their diagnosis. The current study explored the opinions of adults with AS regarding the identity terms related to the changing classification of ASD. A qualitative approach was adopted whereby 12 participants each completed a semi-structured interview that was transcribed and analyzed via Thematic Analysis. The data revealed six themes: 1) Derived Meaning, 2) Knowledge and Understanding, 3) Perceptions and labels, 4) Social Identity, 5) Opinions and Reactions to ASD, and 6) Barriers to Funding and Service Provision. Overall, the results from the current study have practical utility for the AS community, families, and professionals, and will form the basis of future research. Keywords: Asperger Syndrome, ASD, DSM-5, Thematic Analysis ii Acknowledgements I am incredibly thankful for all the amazing, extraordinary, and wonderful people in my life who have encouraged me to pursue my dreams and supported my journey throughout graduate school. I am immensely grateful to my supervisor, Dr. Adam McCrimmon for his continued guidance, expertise, dedication, persistence, attention to detail, availability, reassurance, and positivity. Without your support this project may never have been possible. I am equally as grateful to my co-supervisor, Dr. Tom Strong, for his contributions, guidance, knowledge, and continued support throughout this project. A big thank you to my committee members Dr. Kelly Schwartz, and Dr. Kaori Wada for their time, insightful questions, recommendations, and contributions in reviewing my manuscript. A special thank you to Dr. Sharon Carins for presiding over my oral examination and for ensuring that all policies and procedures were correctly followed. To Amanda Smith, my second coder and mentor, thank you for your time, for reviewing my themes and codes, and for being supportive. To my friends – Thank you for your encouraging words and well wishes. Particular thanks to those that allowed me to share my happiness and sadness with you, lent a shoulder to cry on, answered my late night phone calls and text messages, was understanding when I could not always be present, and most importantly for making me laugh. Laughter truly is the best medicine. To my parents – Thank you for your unconditional love and support. I am forever appreciative of all the hard work and sacrifices you have both made to give my siblings and I with the best education and opportunities possible. Thank you for never giving up on us and for always pushing me to reach my potential. I am proud to call you my parents. To my siblings –Thank you for keeping me grounded. As our lives move in different paths and in different cities, the love and bond between one another continues to grow. Finally, I am forever grateful to my wonderful boyfriend, Darren, who believed in me when I did not believe in myself. You were always there for me when I needed you most. Thank you for helping me to find balance, making sure that I ate, slept, and carved out time for some fun. You always knew how to make me laugh and put a smile on my face. You are my rock, my voice of logic and reason, and my number one supporter. I feel truly blessed to have you in my life. iii Dedication To all the individuals and participants with Asperger Syndrome whom I had the pleasure to meet, thank you for taking the time to share your life, experiences, and personal stories with me. Your touching words have inspired me to continue to work with and provide a voice to the autism spectrum community. I dedicate this thesis to all of you. iv Table of Contents Abstract……………………………………………………………………………………………ii Acknowledgements………………………………………………………………………………iii Dedication………………………………………………………………………………………...iv Table of Contents………………………………………………………………………………….v List of Tables…………………………………………………………………………………….vii List of Figures…………………………………………………………………………………….ix List of Abbreviations………………………………………………………………….…………..x Chapter One: Introduction and Overview……………………………………………………..1 Summary…...……………………………………………………………………………...3 Chapter Two: Literature Review ………….............................................................................. 5 Asperger Syndrome as a Social Construct…………………………...……………………5 The Looping Effect and Dynamic Nominalism…………………………………………...5 Labeling Theory…………………………………………………………………………...7 The Application and Removal of Clinical Labels…………………………………………8 Brief History of ASD and the classification of disorders in the DSM…………………...10 DSM and DSM-II………………………………………………………………..10 DSM-III…………………………………………………………………………..10 DSM-IV………………………………………………………………………….11 Autistic Disorder…………………………………………………………11 Pervasive Developmental Disorder Not Otherwise Specified…………...12 Asperger Syndrome……..……………………………………………….12 DSM-5…………………………………………………………………………...13 Classification of ASD……………………………………………………13 Characteristics……………………………………………………………15 Prevalence of ASD……………………………………………………….16 Rationale behind the change in classification of PDD…………………………………...17 Identity…………………………………………………………………………………...20 Personal identity……………………………………………………………….…22 Social identity theory…………………………………………………………….22 Social categorization……………………………………………………..23 Social identification……………………………………………………...24 Social comparison………………………………………………………..24 Identity salience………………………………………………………………….25 Other Identity Theory …………………………………………………………...27 Clinical identity…………………………………………………………………..28 Autistic culture and Aspie identity………………………………………29 Present Study…………………………………………………………………………….31 Chapter Three: Methodology………………………………………………………………….33 Ontology…………………………………………………………………………33 Epistemology…………………………………………………………………….33 Critical realist…………………………………………………………….34 v Social constructionist...…………………………………………………..34 Axiology and reflexivity…………………………………………………………35 Research Design………………………………………………………………………….34 Qualitative research……………………………………………………………...36 Semi-structured interviews………………………………………………………37 Methodology……………………………………………………………………………..37 Thematic analysis...................................................................................................37 Interpretive phenomenological analysis…………………………………………39 Grounded theory………………………………………………………………....40 Method…………………………………………………………………………………...41 Participants and recruitment efforts……………………………………………...41 Measures…………………………………………………………………………42 General demographic questionnaires…………………………………….42 Wechsler Abbreviated Scale of Intelligence……………………………..42 Interview protocol………………………………………………………..43 Ethical considerations……………………………………………………………44 Procedure and data collection……………………………………………………45 Data analysis……………………………………………………………………..48 Evaluating Qualitative Research and Rigor……………………………………………...51 Chapter Four: Results………………………………………………………………………….53 Theme One: Derived Meaning from their Experiences with the Disorder………………53 Theme Two: Knowledge and Understanding of AS, AD, ASD and DSM-5…………....61 Theme Three: Perceptions associated with Labels………………………………………68 Theme Four: Social Identity……………………………………………………………..74 Theme Five: Opinions regarding the reclassification of PDD and ASD………………...81 Theme Six: Barriers to Funding and Service Provision………………………………….85 Summary…………………………………………………………………………………91 Chapter Five: Discussion……………………………………………………………………….92 Theme One Derived Meaning from their Experiences with the Disorder……………….92 Theme Two: Knowledge and Understanding of AS, AD, ASD and DSM-5………...….95 Theme Three: Perceptions associated with Labels………………………………………98 Theme Four: Social Identity……………………………………………………………102 Theme Five: Opinions regarding the reclassification of PDD and ASD……………….105 Theme Six Barriers to Funding and Service Provision…………………………………107 Limitations……………………………………………………………………………...111 Implications……………………………………………………………………………..114 Future Directions……………………………………………………………………….115 Conclusion and Final Thoughts.......................................................................................117 References……………………………………………………………………………………...118 Tables Table 1. DSM –IV-TR (American Psychiatric Association, 2001; p. 75) diagnostic criteria for Autistic Disorder……………………………………………………………139
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