The life and times of ‘Asperger’s Syndrome’: A Bakhtinian analysis of discourses and identities in sociocultural context Kim Davies Bachelor of Education (Honours 1st Class) (UQ) Graduate Diploma of Teaching (Primary) (QUT) Bachelor of Social Work (UQ) A thesis submitted for the degree of Doctor of Philosophy at The University of Queensland in 2015 The School of Education 1 Abstract This thesis is an examination of the sociocultural history of ‘Asperger’s Syndrome’ in a Global North context. I use Bakhtin’s theories (1919-21; 1922-24/1977-78; 1929a; 1929b; 1935; 1936-38; 1961; 1968; 1970; 1973), specifically of language and subjectivity, to analyse several different but interconnected cultural artefacts that relate to ‘Asperger’s Syndrome’ and exemplify its discursive construction at significant points in its history, dealt with chronologically. These sociocultural artefacts are various but include the transcript of a diagnostic interview which resulted in the diagnosis of a young boy with ‘Asperger’s Syndrome’; discussion board posts to an Asperger’s Syndrome community website; the carnivalistic treatment of ‘neurotypicality’ at the parodic website The Institute for the Study of the Neurologically Typical as well as media statements from the American Psychiatric Association in 2013 announcing the removal of Asperger’s Syndrome from the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5 (APA, 2013). One advantage of a Bakhtinian framework is that it ties the personal and the sociocultural together, as inextricable and necessarily co-constitutive. In this way, the various cultural artefacts are examined to shed light on ‘Asperger’s Syndrome’ at both personal and sociocultural levels, simultaneously. The multiperspectival orientation offered by Bakhtin’s theories is instrumental because I argue in this thesis that it was the struggle for and the effects of various discursively enabled identities - ‘normal’ and ‘not normal’ - that helped shape the unfolding history of ‘Asperger’s Syndrome’. ‘Asperger’s Syndrome’, at least as an official medically sanctioned diagnosis, has had a brief but tumultuous history. It emerged in the early 1980’s in Britain along with other diagnoses on the ‘Autism Spectrum’ (Wing, 1988 ) and was quickly taken-up as a diagnosis of choice, contributing to the reported ‘autism epidemic’ of the late twentieth century. It was also a profitable popular culture commodity and representations of ‘Asperger’s Syndrome’ in books and on television have impacted discourses and subjectivities in significant ways as a regulatory ideal (Butler, 1993). Therefore ‘Asperger’s Syndrome’ as both a product and an effect of pop culture is also analysed for its role in this sociocultural history. Additionally, the role of what I name distributed diagnosis and the diagnostic chronotope will be analysed for their contribution to this fashionation with and the widespread popularisation of ‘Asperger’s Syndrome’. For Bakhtin, ‘self’ is a social and relational accomplishment, chronotopically governed and discursively enabled on the borderlands of alterity. In this process of subjectification, self 2 and others are uttered into existence, and ideological becoming is achieved only through the identity resources provided by heteroglossia. Building upon my critical analysis of cyberspace as a carnival venue and my reconceptualization of transgredience as ethical co-agency, distributed at the times and places of intersubjective encounter, I conclude this thesis with an arts piece, a coda, which re-imagines the initial cultural artefact – the diagnostic interview – anew. In this imaginatively re-created time and place, a different chronotope is in play and different subjective possibilities, for self and others, are opened up through an explicit and fantastic discourse of responsible and responsive co-being (Stetsenko, 2007). In this way this thesis will contribute to the continued dialogical unfolding of ‘Asperger’s Syndrome’ and the subjectivities it offers us all in the possible futures that we are laying down now. 3 Declaration by author This thesis is composed of my original work, and contains no material previously published or written by another person except where due reference has been made in the text. I have clearly stated the contribution by others to jointly-authored works that I have included in my thesis. I have clearly stated the contribution of others to my thesis as a whole, including statistical assistance, survey design, data analysis, significant technical procedures, professional editorial advice, and any other original research work used or reported in my thesis. The content of my thesis is the result of work I have carried out since the commencement of my research higher degree candidature and does not include a substantial part of work that has been submitted to qualify for the award of any other degree or diploma in any university or other tertiary institution. I have clearly stated which parts of my thesis, if any, have been submitted to qualify for another award. I acknowledge that an electronic copy of my thesis must be lodged with the University Library and, subject to the policy and procedures of The University of Queensland, the thesis be made available for research and study in accordance with the Copyright Act 1968 unless a period of embargo has been approved by the Dean of the Graduate School. I acknowledge that copyright of all material contained in my thesis resides with the copyright holder(s) of that material. Where appropriate I have obtained copyright permission from the copyright holder to reproduce material in this thesis. 4 Publications during candidature Davies, K., & Renshaw, P. (2013). Being Aspie or having Asperger Syndrome: Learning and the dialogical self at WrongPlanet.net. In M.B. Ligorio and M. Cesar (Eds.). Interplays between dialogical learning and dialogical self (Chapter 12, pp.393-417), Charlotte, NC: IAP. Davies, K. (2015). A troubled identity: Putting Butler to work on the comings and goings of Asperger’s Syndrome. In T. Corcoran, J. White & B. Whitburn (Eds.). Disability studies: Educating for inclusion (Chapter 13, pp.197-215), Rotterdam, NED: Sense Publishers. Davies, K. (2015). How rude? Autism as a study in ability. In K. Runswick-Cole, R. Mallet & S. Timimi (Eds.). Re-thinking autism: A critique of the autism industry. London, ENG: Jessica Kingsley Publishers. Publications included in this thesis No publications included 5 Contributions by others to the thesis Professor Peter Renshaw contributed 30% as co-author of the following book chapter: Davies, K., & Renshaw, P. (2013). Being Aspie or having Asperger Syndrome: Learning and the dialogical self at WrongPlanet.net. In M.B. Ligorio and M. Cesar (Eds.). Interplays between dialogical learning and dialogical self (Chapter 12, pp.393-417), Charlotte, NC: IAP. This chapter partially informs Chapter 5 of this thesis. Statement of parts of the thesis submitted to qualify for the award of another degree None 6 Acknowledgements Little by little and bit by bit they built themselves a great big ship then climbed aboard and sailed away For Owen and Evan, and for Peter … for making this thesis possible In memory of my Mum and my Pop ... hoping that you would be proud 7 Keywords asperger’s syndrome, autism spectrum disorder, bakhtin, bakhtin studies, dialogism, critical disability studies, critical autism studies, disability studies in education, sociocultural theory, inclusive education Australian and New Zealand Standard Research Classifications (ANZSRC) 130312, Special Education and Disability, 50% 130399, Specialist Studies in Education not elsewhere classified, 50% Fields of Research (FoR) Classification 1303, Specialist Studies in Education, 50% 1399, Other Education, 50% 8 Table of Contents Abstract 2 Declaration by author 4 Publications during candidature 5 Publications during thesis 5 Contributions by others to the thesis 6 Statements of parts of thesis submitted for other degree awards 6 Acknowledgements 7 Keywords 8 Australian and New Zealand Research Classifications (ANZSRC) 8 Fields of Research (FoR) Classification 8 Table of contents 9 List of figures 12 List of abbreviations 13 Chapter 1: Locating the researcher and the research 14 Introduction 14 Locating the researcher-in-the-research: Tracking ‘I’s’ through shifting chronotopes and genres 15 A storied ‘I’ and storying the research 15 The PhD and the researching ‘I’ 17 Research focus and leading questions 19 Significance of the research 21 Possible limitations 22 Architecture of the thesis 23 Chapter 2: Theoretical framework and research design 25 Theorising ‘Asperger’s Syndrome’: Beyond Medical Models? 25 Modelling ‘disability’ 28 Theoretical co-ordinates of a ‘Bakhtinian orientation’ 32 Unit of analysis: The utterance 37 Research design: Selecting and sequencing ‘cultural artefacts’ 37 A note on transcriptions 39 Chapter 3: Passport to another planet: A chronotopic analysis of a diagnosis of ‘Asperger’s Syndrome’ 40 Introduction 40 Chapter overview 42 Bakhtin’s chronotope 42 Chronotopicity of the event and the word 44 Towards a chronotope of diagnosis 45 Hans Asperger and his syndrome 51 Getting ‘Asperger’s Syndrome’: A diagnostic interview 56 Dialogics and the diagnostic chronotope 63 Looking back, looking forward 67 Chapter 4: Alien invasion: The rise and rise of Asperger’s Syndrome 68 Introduction: The normalising work of the diagnostic chronotope 68 Chapter overview 72 Asperger’s Syndrome goes POP! 73 Reported prevalence: On