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Exploring the Self-Reported Experiences of Autistic High School Students University of Calgary PRISM: University of Calgary's Digital Repository Graduate Studies The Vault: Electronic Theses and Dissertations 2021-01-18 Exploring the Self-Reported Experiences of Autistic High School Students Lebenhagen, Chandra Lebenhagen, C. (2021). Exploring the Self-Reported Experiences of Autistic High School Students (Unpublished doctoral thesis). University of Calgary, Calgary, AB. http://hdl.handle.net/1880/113000 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 Exploring the Self-Reported Experiences of Autistic High School Students by Chandra Lebenhagen 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, 2021 © Chandra Lebenhagen 2021 ii Abstract A critical review of the literature indicates that the inclusion of autistic student voice in research and education discourse is minimal, which is problematic because this gap contributes to unethical and often ineffective educational practices and ultimately, poorer education and wellbeing outcomes for autistic students. This study investigated the self-reported school experiences of autistic high school students in Canada using a critical disability theory framework and a phenomenological informed research lens. Student perception data were collected using a mixed-method convergent parallel research design where quantitative data (n=72) was collected via an online survey, and qualitative data (n=19 open-ended responses and n=10 email interviews) was collected using an open-ended survey question and a short semi-structured email interview. Participants were recruited via snowball and convenience sampling through provincial and territory autism agencies, self-advocacy groups, parent councils, superintendents of schools, and Amazon’s Mechanical Turk. Quantitative data were analyzed using descriptive statistics, and qualitative interview data were analyzed using inductive thematic analysis. Based on self-reports, this study found that generally, autistic students’ school experiences were unexceptional. However, students reported most favourably on their school experiences when they were made to feel welcome; when they had access to personalized school spaces; when they received support from their peers; and when teachers used flexible and non-stigmatizing pedagogical practices. A unique finding of this study is that over half of autistic participants shared that they preferred to use non-speaking modes of communication to interact with their teachers and peers because typing and drawing helped improve the clarity of their messages and to minimize feelings of stress and anxiety. The implications of this study are that it provides researchers, educators, and autism allies with new information based on “actually autistic” (Craine, 2020, p. 263) experiences, and it offers researchers a methodological framework to improve the authentic participation of autistic people in research. iii Preface This dissertation is an original creation of the author, Chandra Lebenhagen. Ethics approval to conduct this study was obtained from the University of Calgary. The Ethics ID for this study is REB19-0185. iv Acknowledgements With gratitude, I would like to acknowledge the people that contributed to my learning and the completion of my doctoral degree. First, to my supervisor, Dr. Gabriela Alonso Yanez, you always provided me feedback and direction with kindness and encouragement. Our moments of celebration made me reach farther and I always left our meetings feeling more passionate about research and improving the acceptance of autistic people. To Dr. Anusha Kassan and Dr. Man-Wai Chu, your feedback strengthened the design of this research and encouraged me to consider different ways to enhance the inclusion of autistic voice in research. To Dr. Sharon Friesen for your willingness to help guide this study over the finish line and for providing feedback in ways that were both instructive and inspiring. To my autistic friend and colleague, TC Waisman. For cheering me on as a legitimate autistic ally and for reaching out to offer support and encouragement throughout various stages of my research. I am so thankful that we have become friends and for the knowledge and humour you share. To my family and friends who were patient with me and gave me time and space to study and write. Finally, I would also like to acknowledge and express my sincere gratefulness for the students who participated in this study. Your eagerness, vulnerability, and wisdom are inspiring, and you remind me what it is to be human. v Dedication This dissertation is dedicated to my mom, who passed away during the data collection phase of the study. You taught me to reach high and to outsmart adversity and failure. Your passion for helping children with disabilities, and those less privileged, stands behind my life work and has weaved itself into the pages I have written. vi Table of Contents Abstract ................................................................................................................................................... ii Preface ................................................................................................................................................... iii Acknowledgements ................................................................................................................................ iv Dedication ................................................................................................................................................ v Table of Contents .................................................................................................................................... vi List of Figures .......................................................................................................................................... 9 List of Abbreviations ............................................................................................................................. 10 Chapter 1: Introduction .......................................................................................................................... 11 Problem Statement ............................................................................................................................. 14 Research Question and Purpose ........................................................................................................ 15 Rational and Significance .................................................................................................................. 15 Researcher Perspective and Assumptions ......................................................................................... 16 Definition of Key Terms ................................................................................................................... 18 Chapter 2: Literature Review ................................................................................................................ 20 Historical Perspectives on Theories and Treatment of Autism ......................................................... 22 Parent Perspectives on Theories of Disability and Inclusion ............................................................ 28 Identity First Perspectives on Autism, Ability and Inclusion ............................................................ 33 A Review of Inclusive Education Policy and Practice ...................................................................... 45 A Review of Autistic Students’ School Experiences ........................................................................ 49 Chapter Summary .............................................................................................................................. 53 Chapter 3: Methodology ........................................................................................................................ 54 Researcher Perspective ...................................................................................................................... 54 Combining Critical Disability Theory with a Phenomenological Researcher Lens in Autism Research ............................................................................................................................................ 55 Research Design Overview ............................................................................................................... 62 Recruitment, Research Setting, Participants and Data Sources ......................................................... 63 Data Collection .................................................................................................................................. 70 Procedures for Data Analysis ............................................................................................................ 78 vii Ethical Considerations ....................................................................................................................... 81 Validity, Reliability, Trustworthiness, Treatment and Integrity ......................................................
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