Well-Being in Adults with High Functioning Autism Characteristics
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University of Calgary PRISM: University of Calgary's Digital Repository Graduate Studies The Vault: Electronic Theses and Dissertations 2017 Well-Being in Adults with High Functioning Autism Characteristics Beler, Janice Marie Beler, J. M. (2017). Well-Being in Adults with High Functioning Autism Characteristics (Unpublished doctoral thesis). University of Calgary, Calgary, AB. doi:10.11575/PRISM/28683 http://hdl.handle.net/11023/3580 doctoral 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 Well-Being in Adults with High Functioning Autism Characteristics by Janice Marie Beler A THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF EDUCATION GRADUATE PROGRAM IN EDUCATIONAL RESEARCH CALGARY, ALBERTA JANUARY, 2017 © Janice Marie Beler, 2017 WELL-BEING IN ADULTS WITH HFAC Abstract This study sought to examine well-being in adults with characteristics of high functioning autism. Drawing on first-, second-, and third-person perspectives, this study explored how autistic traits affect well-being. Integral methodological pluralism (IMP) was employed as a framework towards achieving a more balanced, comprehensive understanding of both background knowledge and issues germane to the topic of well-being in high functioning autism. The themes examined include the role of self in autism, relationships and autism, cognitive science and autism, and the approach to teaching learners with high functioning autism recommended by the Ministry of Education in the province of Alberta. Autism is a complex developmental disorder that is marked by its heterogeneity of symptoms, severity, and etiology. It has become a major field of research in multiple disciplines. Increased awareness has led to new methods for educating this growing population of learners. In spite of Alberta’s movement towards evidence-based teaching, much of our effort currently focuses on managing and controlling symptoms in order to promote positive behavior and immediate academic success. There is evidence that this approach amounts to short-term interventions designed to meet the more immediate needs of the child within the school setting, possibly at the expense of identifying and imparting skills and understandings that will contribute to long-term success and wellness. In the spirit of backward design models of educational planning, this study investigated understandings of well-being in high functioning autism. By improving the understanding relating to how adults with high functioning autism interpret and experience well-being, the findings can be used to provide curricular direction for youth that are less likely to be able to recognize and articulate the phenomena than adults. ii WELL-BEING IN ADULTS WITH HFAC This thesis is dedicated to my family. My husband Kirk pushed me to move forward with my curiosity because he knew before I did that it was something I needed to do. Without his support, none of this could have happened. My sons, Kody and Jared, keep the fire burning in me to contribute what I can to help make the world a better place for our children, our future. My parents have always believed in me, even when I didn’t. My siblings have supported me in countless ways including providing me with lodging, asking important questions, making me laugh and always reminding me what really matters. iii WELL-BEING IN ADULTS WITH HFAC Acknowledgements Dr. Veronika Bohac Clarke has been the ideal thesis supervisor. She brilliantly guided me towards examining, focusing in on and understanding critical issues and important understandings from my research. She did this with such precision and skill that I frequently found myself reaching into the depths of my consciousness to uncover understanding and direction that I otherwise would not have been aware existed. She challenged me to explore avenues that I thought would lead nowhere. Then, when those magical moments of breakthrough occurred, she would simply smile and acknowledge my progress like she knew it was always there, just waiting for her to tease it out of me. I also want to thank Dr. Brent Davis, bad cop to Dr. Bohac Clarke’s good cop. He somehow mastered the contrary qualities of being patient and demanding simultaneously. He asked difficult and important questions that even now haunt me, because I am still working towards finding those answers. His sage advice at the beginning of my studies, that my research should be built around a problem that already kept me awake at night, was instrumental to my ability to finish this dissertation. iv WELL-BEING IN ADULTS WITH HFAC Table of Contents Abstract ........................................................................................................................................... ii Chapter 1: Research Problem.......................................................................................................... 1 1.1 Introduction ........................................................................................................................... 1 1.2 Background and Context....................................................................................................... 1 1.3 Problem Statement ................................................................................................................ 3 1.4 Statement of Purpose and Research Questions ..................................................................... 4 1.5 Research Approach ............................................................................................................... 5 1.6 Research Design Overview ................................................................................................... 6 1.7 Definition of Terms ............................................................................................................... 7 1.8 Rationale and Significance ................................................................................................. 13 Chapter 2: Review of the Literature ............................................................................................. 14 2.1 Introduction ......................................................................................................................... 14 2.2 Purpose Statement ............................................................................................................... 14 2.3 Search Terms and Parameters ............................................................................................. 15 2.4 Conceptual Framework ....................................................................................................... 16 2.5 Integral Methodological Pluralism and Multi-Methods Approach ..................................... 16 2.6 Ontology, Epistemology, and Enactment ........................................................................... 18 2.7 Well-Being .......................................................................................................................... 21 2.8 Autism ................................................................................................................................. 25 2.9 Identification and Diagnosis ............................................................................................... 27 2.10 Cognitive Theories of Autism ........................................................................................... 28 2.11 The Role of Self in Autism ............................................................................................... 37 v WELL-BEING IN ADULTS WITH HFAC 2.12 Interpersonal Relationships and Autism ........................................................................... 38 2.13 Alberta Education and High Functioning Autism ............................................................ 39 2.14 Summary and Conclusion ................................................................................................. 47 Chapter 3: Research Methodology ............................................................................................... 48 3.1 Introduction and Overview ................................................................................................. 48 3.2 Research Paradigm and Methodology ................................................................................ 48 3.3 Description of Methodologies ............................................................................................. 48 3.4 Setting and Context of Study .............................................................................................. 54 3.5 Research Population ............................................................................................................ 57 3.6 Methodology and Research Questions ................................................................................ 59 3.7 Methods and Procedures ..................................................................................................... 61 3.8 Methods for Data Analysis and Synthesis .......................................................................... 63 3.9 Ethical Considerations .......................................................................................................