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A Sheffield Hallam University Thesis Autism, sociality and friendship: a qualitative enquiry BAKER-ROGERS, Joanna Available from the Sheffield Hallam University Research Archive (SHURA) at: http://shura.shu.ac.uk/21506/ A Sheffield Hallam University thesis This thesis is protected by copyright which belongs to the author. The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author. When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given. Please visit http://shura.shu.ac.uk/21506/ and http://shura.shu.ac.uk/information.html for further details about copyright and re-use permissions. Autism, sociality and friendship: a qualitative enquiry Joanna Baker-Rogers A thesis submitted in partial fulfilment of the requirements of Sheffield Hallam University for the degree of Doctor of Education December 2017 ABSTRACT In my thesis, I report on my qualitative enquiry into the meaning of sociality and friendship from the perspective of persons with autism. I sought to make a contribution to knowledge by describing: 1) the meaning that persons with autism attach to sociality and friendship; 2) the barriers that persons with autism encountered in experiencing sociality and friendship; and 3) how persons with autism see these barriers being overcome. Data was gathered from three primary data sources: video blogs, online interviews, and autobiographical accounts published in books. The narratives I reviewed had been posted or written by persons with autism and were subjected to thematic analysis. The enquiry methodology reflected my commitment to emancipatory disability research and my theoretical position of possibilities for an enabling narrative of sociality and friendship for persons with autism. My analysis of the data evidenced that my sources desired to socialise, make friends, and maintain friendships. Despite their successes in making friends and maintaining friendships, the sources distrusted their sociality that I labelled autistic sociality. The sources regarded predominant neurotype (PNT) sociality as the only trusted pathway to making friends and maintaining friendships. The sources positioned their sociality as a distinct pathway that they described as lacking PNT social skills and personal qualities that didn’t enable friends to be made and friendships to be maintained. The PNT meaning of sociality had been internalised by the sources as the correct, obtainable, and only way of being that resulted in their disadvantaged outcome. For me, the task of overcoming social barriers was regarded by the sources as being their responsibility alone, and could only be achieved by developing PNT social skills and personal qualities. Sources didn’t expect the PNT to gain an understanding of their sociality. I argue that this binary of autistic and PNT sociality resulted from encountering the disabling social barriers of normalcy and ableism. I also argue that overcoming these social barriers requires broader constructions of sociality and friendship that include the meaning described by persons with autism. An enabling narrative of sociality and friendship for persons with autism is, therefore, required that deconstructs the binary of autistic and PNT sociality for persons with autism and argues for a range of sociality and friendship possibilities across being human. There is I conclude one sociality that enables friends to be made and friendships to be maintained by both persons with autism and the PNT. i ACKNOWLEDGEMENTS Thank you to everyone who has supported me in my doctoral studies. Thanks to my son, Dylan, for providing the inspiration for my research and to my daughter, Imogen, for her informed critiques of my writing. Thank you to my husband, Steve, for all his support over the last six years. To my sister, Amanda, whose empathy has encouraged me to continue to read, and write and research. I would also like to acknowledge the support of my family and friends both near and far for their unwavering interest in the number of words I had written. Thanks to friends and colleagues who had already completed their doctoral journey and understood the task I was undertaking. Special thanks to Dr Nick Chown, whose faith in my academic abilities never faltered, and gave me the confidence to finish my thesis. Finally, I would like to thank my supervisors Professor Jacqueline Stevenson and Professor Tim Jay. ii CONTENTS 1 Chapter One: Introduction ....................................................... 1 1.1 The origins of my area of interest ....................................................... 1 1.2 Choice of terms..................................................................................... 2 1.3 Data sources ......................................................................................... 4 1.4 The gap in knowledge .......................................................................... 7 1.5 Research questions.............................................................................. 8 1.6 Thesis structure.................................................................................... 9 2 Chapter Two: Literature review.............................................. 11 2.1 Introduction......................................................................................... 11 2.2 The conundrum of sociality, making friends, and maintaining friendships ................................................................................................... 12 2.3 The medical model of disability ideology......................................... 14 2.3.1 The origins of autism...................................................................... 14 2.3.2 Researching disability .................................................................... 15 2.3.3 Autism as a social construct........................................................... 17 2.3.4 Diagnostic criteria........................................................................... 18 2.3.5 Summary........................................................................................ 20 2.4 The social model of disability............................................................ 21 2.4.1 The neurodiversity movement........................................................ 22 2.4.2 The disadvantage of persons with autism...................................... 24 2.4.3 Summary........................................................................................ 25 2.5 Critical autism studies (CAS) understanding of autism.................. 26 2.6 My theoretical position....................................................................... 28 2.7 Theory of mind.................................................................................... 29 2.7.1 Autism as a relational disorder....................................................... 30 2.7.2 Summary........................................................................................ 32 2.8 Sociality ............................................................................................... 33 2.8.1 The PNT view of sociality............................................................... 34 2.8.2 The person with autism view of sociality ........................................ 36 2.8.3 Shared behaviours of the PNT and persons with autism ............... 37 2.8.4 Summary........................................................................................ 38 2.9 Friendship............................................................................................ 39 2.9.1 The PNT perspective of friendship................................................. 41 2.9.2 The person with autism perspective on friendship ......................... 42 2.9.3 Summary........................................................................................ 44 2.10 Normalcy.............................................................................................. 45 2.11 Ableism................................................................................................ 47 2.12 Internalised normalcy and ableism................................................... 49 2.13 Summary.............................................................................................. 50 3 Chapter Three: Philosophical & methodological framework.... 53 3.1 Introduction......................................................................................... 53 iii 3.2 Researcher positionality .................................................................... 53 3.2.1 Academic research ........................................................................ 54 3.2.2 The parent-researcher ................................................................... 55 3.2.3 Role as a non-disabled researcher in researching autism ............. 57 3.2.4 Role as a non-disabled mother of a child with autism.................... 58 3.3 Philosophical assumptions ............................................................... 61 3.3.1 Epistemological position................................................................. 61 3.3.2 Ontological position........................................................................ 62 3.3.3 Axiological position......................................................................... 63 3.4 Methodological framework ................................................................ 63 3.4.1 Research paradigms ...................................................................... 64 3.4.2 Transformativism...........................................................................
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