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Tracing Autism’ Ambiguity and Difference in a Neuroscientific Research Practice

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Tracing Autism’ Ambiguity and Difference in a Neuroscientific Research Practice The London School of Economics and Political Science ‘Tracing Autism’ Ambiguity and difference in a neuroscientific research practice Patrick D. Fitzgerald A thesis submitted to the Department of Sociology of the London School of Economics for the degree of Doctor of Philosophy London, September 2012 1 Declaration I certify that the thesis I have presented for examination for the PhD degree of the London School of Economics and Political Science is solely my own work other than where I have clearly indicated that it is the work of others (in which case the extent of any work carried out jointly by me and any other person is clearly identified in it). The copyright of this thesis rests with the author. Quotation from it is permitted, provided that full acknowledgement is made. This thesis may not be reproduced without my prior written consent. I warrant that this authorisation does not, to the best of my belief, infringe the rights of any third party. I declare that my thesis consists of 88,543 words. I can confirm that portions of this thesis were copy-edited for conventions of language, spelling and grammar by John MacArtney, Megan Clinch, Joanne Kalogeras, Juljan Krause and Neasa Terry. ________________________________________________________ Des Fitzgerald, September 2012 2 Abstract Tracing Autism is about neuroscientists’ on-going search for a brain-based biomarker for autism. While much recent sociological work has looked at the ‘cerebralization’ of such diverse diagnostic categories as depression, bipolar disorder, psychopathy, addiction, and even autism itself, surprisingly little light has yet been shed on the mundane ways that researchers in the new brain sciences actually think about, reason through, and hold together neurological accounts of complex and emerging diagnostic entities . Situating itself within a series of interviews with neuroscientists who work on the autism spectrum, one of the most enigmatic, recalcitrant and unresolved categories of contemporary neuroscience, Tracing Autism is an attempt to fill this gap. The key argument is that while this work might be seen as a process of gradual ‘neurobiologization’ or ‘neuromedicalization,’ talking to autism neuroscientists reveals a practice much more complex, much more ambiguous, much less monolithic, and also much less certain, than the sociological literature yet fully realizes. The thesis shows how autism neuroscience works by tracing its way across some very different and ambiguous commitments – carefully negotiating the space between the biological and diagnostic definitions of autism, the hope and disappointment of neuroimaging technology, as well as the intellectual and visceral commitments of laboratory research. Locating itself within a recent turn to theorising the entanglement of cultural and biological phenomena within scientific spaces (Barad, 2007), and joining with a growing literature that wants to take neuroscience seriously (Wilson, 2004), Tracing Autism shows how the complex work of autism neuroscience picks its way across social deficits, neurobiological substrates, psychological theories, disappointing machines, and loving scientists. Tracing Autism is the story of an intellectual and affective complexity that has come to define autism neuroscience; but it is also the story of the care, seriousness and novelty with which neuroscientists talk about their work. 3 Acknowledgements As much as a thesis emerges from its author’s own desires, struggles and failings, it is also deeply entangled in the intellectual communities in which the author was lucky (or unlucky) enough to find themselves. The most important of my intellectual communities has been the BIOS Centre, late of LSE, now part of the department of Social Science, Health and Medicine at Kings College London. It is impossible to acknowledge (or even recall) everyone from such a brilliant and dispersed group – but through 4 years at BIOS I was particularly glad of conversations with, and the formal or informal support of, Joelle Abi-Rached, Astrid Christoffersen-Deb, Megan Clinch, Caitlin Cockerton, Victoria Dyas, Sabrina Fernandez, Angela Filipe, Susanna Finlay, Carrie Friese, Cathy Herbrand, Amy Hinterberger, Kerry Holden, John MacArtney, Claire Marris, Ilina Singh, Sara Tocchetti, Scott Vrecko and Ayo Wahlberg. I spent three years as a participant in the NYLON group at LSE and Goldsmiths, where I learned a lot about what a contemporary social science could and should look like. I am particularly grateful to its faculty and organisers - Nick Couldry, Adam Kaasa, Shani Orgad, Fran Tonkiss, and Vic Seidler. Through the fairly grim business of writing, I took up belated residence in the sociology research room at LSE; I especially want acknowledge Malcolm James, Juljan Krause, Naaz Rashid, and Jill Timms for being such great writing-up companions. For comments on early drafts of chapters, or for proof-reading help towards the end, I am in debt to Felicity Callard, Megan Clinch, Amy Hinterberger, Joanne Kalogeras, Juljan Krause, John MacArtney, Kerry Holden and Neasa Terry. For financial support during the last two years of the project, I am grateful to a research studentship from the Department of Sociology at the LSE. I am, of course, particularly grateful to everyone who agreed to be interviewed for this thesis – giving up their time for what must have looked, at best, like a quixotic pursuit. I can’t help but feel that the sympathetic portrait of neuroscience, herein, is at least partly a product of my pleasant surprise that so many people would actually take the time to talk to me, and, even more, that they would be so generous during my interviews. The most profound intellectual debt of the thesis, of course, is to Nikolas Rose, who is not only present in the thesis as an advisor, and shaper of its main concerns, but also as a model of what a generous, open-minded, and risky collaborating sociology might eventually look like – especially, indeed, as that sociology begins to acknowledge its own entanglement in so many different forms of life. My final hope, for the thesis, is that it might be read as a contribution to just such a development. 4 Acronyms and s hortened words used in the thesis ABA Applied Behaviour Analysis ADHD Attention Deficit Hyperactivity Disorder ADI -R Autism Diagnostic Interview - Revised ADOS Autism Diagnostic Observation Schedule ANT Actor -Network Theory APA American Psychiatric Association ASD Autism Spectrum Disorder(s) CDC Centers for Disease Control (US) DSM Diagnostic and Statistical Manual of Mental Disorder. Also DSM -IV, DSM -IV - TR and DSM-V for different editions ECG Electrocardiogram EEG Electroencephalography, or an Electroencephalogram fMRI functional Magnetic Resonance Imaging MEG Magnetoencephalography, or a Magnetoencephalogram MRI Magnetic Resonance Imaging NHS National Health Service (UK) NIMH National Institutes of Mental Health (US) NINDS National Institute of Neurological Disorders and Stroke (US) HFA High -functioning autism PI Principal Investigator PKU Phenylketonuria Postdoc Postdoctoral researcher RCT Randomised Control Trial SPECT Single -Photon Emission Computed Tomography STS Science and Technology Studies WHO World Health Organisation 5 Table of Contents Declaration ........................................................................................................................ 2 Abstract ............................................................................................................................. 3 Acknowledgements ........................................................................................................... 4 Acronyms and shortened words used in the thesis .......................................................... 5 Introduction ...................................................................................................................... 8 Outline of the argument ............................................................................................... 8 Method ....................................................................................................................... 18 The Structure of the Thesis......................................................................................... 30 1. Public issues/private bodies – sociologies of neuroscience and autism .................... 34 Introduction ................................................................................................................ 34 Neuroscience .............................................................................................................. 35 Critique ....................................................................................................................... 41 Autism ......................................................................................................................... 48 Conclusion .................................................................................................................. 57 2. What neuroscientists talk about when they talk about autism.................................. 58 Introduction ................................................................................................................ 58 The Unchanging Core ................................................................................................. 60 It’s not clear that there’s just one condition. ............................................................. 65 The only thing people agree on .................................................................................
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