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“Determined to Succeed”: Perceptions of Success from Autistic Adults

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“Determined to Succeed”: Perceptions of Success from Autistic Adults “DETERMINED TO SUCCEED”: PERCEPTIONS OF SUCCESS FROM AUTISTIC ADULTS by ANDREA GEORGIA MACLEOD A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY VOLUME I Department of Disability, Inclusion and Special Needs School of Education College of Social Sciences University of Birmingham March 2016 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. ABSTRACT This qualitative study employed a participatory approach to consult with sixteen autistic students on their experiences of success. Participants were students at five different UK higher education institutions. Using Interpretative Phenomenological Analysis, the research explored how they defined their successes and made sense of them in relation to their autism diagnoses. A flexible, multi-staged interview process was used. Evaluations indicated that the methodology enabled participation on both practical and theoretical levels. Participants became co-analysts of their data and demonstrated commitment to the project. The students described a wide range of successes, from the academic to the deeply personal, providing powerful counter-narratives to the dominant deficit- based interpretation of autism. The encouragement of one key individual (professional, family member or friend) had often been greatly influential to their achievements. Findings indicated the need for participants to both resist essentialist discourses regarding autism and to make themselves ‘extra-visible’ as an autistic person in order to assert their rights, with the autism diagnosis perceived as both an aid to self-understanding and a cause of additional barriers. In raising awareness of their own needs, participants contributed to broader understandings of autism, becoming educators and role models. The research demonstrates the importance of insights from autistic individuals, in particular showing how making sense of the autism label relates to perceptions of success. Implications for post-diagnostic support are discussed. DEDICATION This is for you, Mum, “the star I steer by” – with love x ACKNOWLEDGEMENTS Firstly and most importantly, to all of my study participants, I would like to extend heartfelt thanks: each of you contributed so much and so willingly, I only hope that I have done justice to what you have given me. Thanks to all, including Gillian Loomes and John Steele (for contributions to the pilot), and to Alexander Ashley, Helen Boughen, Cherrelle Higgs, Andrew Jones, Catherine Knight, Damian Milton, Rebecca Simmons, Jacob Turner and Georgina Ward for contributions to the main study. Also to the various Student Services departments, and in particular Sue Green, for your generous help as gatekeepers. A sincere thank you also to Julie Allan, Ann Lewis and Christopher Robertson (in alphabetical order!) for many wise words, useful suggestions - and a bucketload of patience. I have felt truly privileged to have had the support of such a ‘dream team’! Thanks also to Jonathan Smith, for responding so promptly to my requests and enquiries. To my husband Charlie, thank you for your insightful discussions, relentless optimism and generous pourings of red wine. And to Joe and Georgia, for cuddles to keep me grounded. Last but certainly not least, sincere thank you to Kerstin Wittemeyer for help on my final draft. CONTENTS CHAPTER 1 Introduction 1 1.1 Personal context for the research 1 1.2 The neglect of success 3 1.3 Higher education as a measure of success 4 1.4 Success as a step towards equality 6 1.5 What we don’t know about autism 7 1.6 A note about terminology 9 1.7 Research questions 10 1.8 Outline of the thesis 10 CHAPTER 2 The autistic experience: review of the literature 12 2.1 Introduction 12 2.2 Outcomes for autistic adults 13 2.2.1 Overview of outcome research 13 2.2.2 Outcome studies with mixed cohorts 13 2.2.3 Outcome studies limited to IQ 70+ cohorts 16 2.2.4 Mental health and anxiety 18 2.2.5 Optimal outcome (OO) 20 2.2.6 Autistic success 21 2.2.7 Concluding comments on the literature relating to outcomes 22 2.3 Autistic students within higher education 24 2.3.1 Overview of disabled students within higher education 24 2.3.2 The experiences of disabled students 25 2.3.3 Autistic students within UK higher education 27 2.3.4 Autistic students in higher education outside the UK 31 2.3.5 Concluding comments on the literature relating to autistic students within higher education 36 2.4 Representations of autism 38 2.4.1 The place of autism within disability studies 39 2.4.2 Less visible disabilities 41 2.4.3 A brief history of autism 43 2.4.4 Representations of autism from non-autistic writers 45 2.4.5 Representations of autism from autistic writers 52 2.4.6 Representations of autism within research studies 56 2.4.7 Concluding comments on representations of autism 60 2.5 The autistic voice within research 61 2.5.1 Concluding comments on the voice of research participants 64 2.6 Summary of the literature in relation to the thesis 64 CHAPTER 3 The case for interpretative phenomenological analysis (IPA) and a participatory approach 67 3.1 Introduction 67 3.2 The autistic experience 67 3.3 “Back to the things themselves!”: Making the Case for an IPA Stance 68 3.4 Participatory and emancipatory paradigms 73 3.5 The use of IPA with autistic participants 76 3.6 IPA and sample size 86 3.7 Summary of the research approach 88 CHAPTER 4 Methodology 90 4.1 Introduction 90 4.2.1 Research aims 90 4.2.2 Pilot work 92 4.2.3 Means of participation 94 4.2.4 Use of the ‘Critical Incident Technique’ (CIT) 95 4.2.5 Interview process 96 4.2.6 Evaluation of the research process 100 4.2.7 Recruitment 101 4.2.8 Ethical considerations 102 4.2.9 Analytical process and theoretical influences 103 4.3 Summary of the methodology 111 CHAPTER 5 Research findings 113 5.1 Introduction 113 5.2 Summary of participants 113 5.2.1 Participants and their successes 116 5.2.2 Modes of participation 148 5.2.3 Participant evaluations 149 5.3 Summary of themes 150 5.4 Theme one: The autistic experience 152 5.4.1 “That's my own perception and I can see how based on this conversation you might see it differently” 152 5.4.2 “Sometimes I don’t really want to relive bad moments. And reading it wasn’t the hard part, the hard part was more like understanding that it happened.” 158 5.5 Theme two: Elements of success 160 5.5.1 “Weebles wobble but they don’t fall down” 160 5.5.2 “You’re a social animal, you just need it and I’m no exception to that” 182 5.5.3 “I really wanted to go to university to sort of get away and start anew” 202 5.6 Theme three: Identity and autism 205 5.6.1 “What I have always felt, like I was on the outside looking in” 205 5.6.2 “I feel that having the diagnosis put this barrier there as they looked at the label instead of me” 218 5.6.3 “And that’s what drives you forward. It’s like ‘I will show you’ and that’s what it’s all about really.” 226 5.7 Summary 232 CHAPTER 6 Discussion: 'Working' on success 234 6.1 Introduction 234 6.2.1 Foucault and the self 236 6.2.2 Becoming extra-visible 238 6.2.3 Autism as a ‘form-of-life’ 240 6.2.4 Action and resistance 242 6.3.1 Hacking and the ‘making up’ of autism 243 6.3.2 Hacking’s ‘Looping Effect’ 247 6.4.1 Voices within the debate 249 6.5 Summary of discussion 259 CHAPTER 7 Conclusions 261 7.1 Introduction 261 7.2 Limitations and caveats 261 7.3 The research approach 264 7.3 Autistic and non-autistic interpretations 267 7.4 Enabling success 273 7.5 Concluding thoughts 277 REFERENCES 283 LIST OF TABLES Table 1 Example of progression of analysis between first and 106 second interview Table 2 Summary of participants 114 APPENDICES Appendix l Interview schedule 306 Appendix ll Interview prompt sheet 308 Appendix lll Brief evaluation of interview 309 Appendix lV Participant information sheet 313 Appendix V Participant consent form 315 Appendix Vl Sample transcript 318 Appendix Vll Data theme table 342 Appendix VIII Analysis checking document 351 Appendix IX Interview evaluation data 353 Appendix Xl Evidence of impact 362 CHAPTER 1 INTRODUCTION 1.1 Personal context for the research In May of 1989 I drove 1200 miles to attend the tenth annual TEACCH conference, where I learned that autistic people can't drive. (Sinclair, cited in Howlin, 2004, p. 335) This thesis is concerned with the phenomenon of success and personal achievement, as experienced by autistic adults. I introduce my thesis with the words of Jim Sinclair, an autistic man from the US, as it has been the single most influential quotation to my professional and academic career. In these few lines Sinclair highlights at once his personal achievement, its contradiction of accepted ‘autism fact’ and the way in which this in turn impacts on him as he is asked to ‘learn’ something about autistic people that he knows to be untrue.
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