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Tracing Autism’ Ambiguity and Difference in a Neuroscientific Research Practice

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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.

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Acronyms and shortened words used in the thesis ABA

Applied Behaviour Analysis

ADHD ADI-R ADOS ANT

Attention Deficit Hyperactivity Disorder Autism Diagnostic Interview - Revised Autism Diagnostic Observation Schedule 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 Electrocardiogram

ECG EEG

Electroencephalography, or an Electroencephalogram functional Magnetic Resonance Imaging Magnetoencephalography, or a Magnetoencephalogram Magnetic Resonance Imaging

fMRI MEG MRI NHS NIMH NINDS HFA PI

National Health Service (UK) National Institutes of Mental Health (US) National Institute of Neurological Disorders and Stroke (US) High-functioning autism Principal Investigator

PKU

Phenylketonuria
Postdoc Postdoctoral researcher

RCT

Randomised Control Trial

SPECT STS

Single-Photon Emission Computed Tomography Science and Technology Studies World Health Organisation

WHO

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.................................................................................. 70 If you’ve got Down’s Syndrome, you’re not fascinating............................................. 74 There’s this thing we recognise when we see it and it’s this thing called autism...... 79 Conclusion .................................................................................................................. 84

3. The trouble with brain-imaging – dynamics of hope and disappointment in a tracing neuroscience................................................................................................................... 88

Introduction................................................................................................................ 88 The dream is to intervene .......................................................................................... 90 Now we have all these wonderful tools..................................................................... 94 A very indirect measure.............................................................................................. 97 The trouble with brain-imaging................................................................................ 102 Entangling expectations ........................................................................................... 106 Critical Neuroscientists............................................................................................. 110 Conclusion ................................................................................................................ 113

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4. And then it hit me in the stomach – emotion, scientific subjectivity, and the affective labour of autism neuroscience ..................................................................................... 116

Introduction.............................................................................................................. 116 I remember one woman. It was heart-breaking....................................................... 120 I want to do this. I want to do this............................................................................ 125 Thinking and feeling ................................................................................................. 128 Objects of love.......................................................................................................... 134 Conclusion ................................................................................................................ 142

5. Falling in the middle – psychology and autism between ‘science’ and ‘the social’..................................................................................................................... 145

Introduction.............................................................................................................. 145 Freud and Faff........................................................................................................... 150 ‘Everyone has his classics’ ........................................................................................ 156 The Witch’s Brew...................................................................................................... 161 Falling in the middle ................................................................................................. 168 Conclusion ................................................................................................................ 174

6. There's a unicorn – working through difference and distinction in the neuroscience of autism................................................................................................. 177

Introduction.............................................................................................................. 177 Sort of a multi-level thing......................................................................................... 180 A mix of everything................................................................................................... 186 Trace it up................................................................................................................. 195 Conclusion ................................................................................................................ 203

Conclusion – key themes for a tracing neuroscience of autism ................................... 206
Introduction.............................................................................................................. 206 Complexity and ambiguity in the space of neuroscience......................................... 206 Locating the trace..................................................................................................... 208 Neuropsychological naturecultures.......................................................................... 211 Specifying the space ................................................................................................. 214 Figuring autistic presence......................................................................................... 216

Appendix One: Information Sheet......................................Error! Bookmark not defined. Appendix Two: Consent Form.............................................Error! Bookmark not defined. Appendix Three: Anonymised List of Interviewees ............Error! Bookmark not defined. Bibliography .................................................................................................................. 219

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Introduction

Outline of the argument

At the end of June 2012, New Scientist carried a story about a potential new brainbased biological marker – or ‘biomarker’ – for the neurodevelopmental disorder, autism (Coghlan, 2012). The tone of the piece was uncharacteristically low-key – and yet, if the central proposal proved correct (that patterns of brain activity could be used to diagnose autism), it would be quite a breakthrough. Autism was first described by the child psychiatrist, Leo Kanner, in 1943, when Kanner noticed increasing numbers of children coming to his clinic with symptoms that could be formed into a consistent profile – and one that was not well-characterised within the existing psychiatric literature (Kanner, 1968 [1943]). Often bright, and sometimes with real intellectual strengths in specific areas, these were children who nonetheless did not communicate typically, if at all; who often showed little interest in the company of their parents, or in anyone else’s company; who sometimes did not seem to make strong distinctions, in interaction, between other people and inanimate objects; who relied on repetitive and stereotyped movements, and often had very specific, narrow-looking interests; who had deeply idiosyncratic speech patterns, and sometimes seemed happiest when left alone – so, on and on, went the description (Kanner, 1968 [1943]). Building his account, in particular, around a characteristic sense of aloneness, and on the degree to which, in his view, ‘these children had never engaged with the social world’ (Grinker, 2007: 53), Kanner characterized his syndrome as an ‘autistic disorder of affective contact’ – borrowing, a term coined by Bleuler to describe (in schizophrenia) ‘an active turning away from the external world’ (1951 [1913]: 399).
Despite the debates and controversies that have sprung up in the intervening decades, Kanner’s ‘autistic disorder of affective contact’ is still recognisably the syndrome that today we call autism – or, in recognition of the symptoms’ variability, autism spectrum disorders [ASD1]. In contemporary clinical accounts, autism is usually described as a complex developmental disorder, with characteristic ‘deficits’ in three core domains: social interaction, communication, and range of interests

1

Throughout the thesis, I will usually just refer to ‘autism’ – which remains the most commonly-used descriptor, despite widespread recognition of the range of underlying symptoms. I will have more to say about the ‘heterogeneity’ and the ‘spectrum’ of what are sometimes called ‘the autisms’ in the next chapter (Coleman and Gillberg, 2011)

8

(American Psychiatric Association [APA], 2000: 75; World Health Organization [WHO], 2007). In the soon-to-be superseded fourth edition2 of the APA’s Diagnostic and Statistical Manual of Mental Disorder [DSM-IV], symptoms include ‘a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people,’ ‘a lack of emotional reciprocity,’ ‘stereotyped and repetitive use of language or idiosyncratic language,’ and ‘encompassing preoccupation with one or more stereotyped and restricted patterns of interest’ (APA, 2000: 75). In the decades immediately following Kanner’s identification, autism research, unattached to any obvious neurological or other biological cause, remained a beguiling if niche interest (see Evans, 2010, for the history of autism research in the UK). What is perhaps most remarkable about autism, though, is that, in many countries, including the UK – growing slowly, but starting really in the 1980s and 1990s – autism became very suddenly visible, and very suddenly present. In 1976, autism had an estimated prevalence rate of between 4 and 5 per 10,000 children under 15 – or about 1 child in 2,000/2,500 (Wing et al., 1976). By 2009, and in a study of 5-9 year-olds only, autism was estimated to be diagnosable in about 1 child in 64 (Baron-Cohen et al., 2009; Powell et al., 2000).3 Although many have argued for an environmental cause for this upsurge, the most common (clinical and research) view is that the increase in diagnosis reflects some combination of better recognition of autistic symptoms, and also ‘diagnostic substitution’ of autism for older categories like ‘mental retardation’ (Frith, 2003; Eyal et al., 2011)4. In any event, with this surge in diagnosed prevalence came a quite sudden growth in popular awareness and concern about autism – marked by its growing visibility in politics (in the UK, the All-Party Parliamentary Group on Autism was established in in 2000), the arts

(Mark Haddon’s The Curious Incidence of the Dog in the Night-time was published in

2003), the charitable sector (the research funder, Autistica, was set up in 2004),

2 The fifth edition of the APA’s definitive diagnostic tome (DSM-V) is due to be published in 2013. The list of proposed changes is available online, with autism among those diagnoses potentially set to be significantly altered (APA, 2011; Mahjouri and Lord, 2012.).

3

The same pattern is seen in many other countries – including the USA (Centers for Disease Control [CDC], 2012a), Sweden (Gillberg et al, 2006), and Israel (Gal et al., 2012).

4

Although I will not spend a great deal of time on it, the causality of autism, and discussions of an autism ‘epidemic,’ remain complicated and sometimes bitterly-divided topics (CDC, 2012b ). The issue is particularly vexed by a history of ‘parent-blaming’ in an older psychiatric culture (Bettelheim, 1967; See Feinstein, 2010, for a history). This pushed many groups of parents to focus on extrinsic causes, and into attempts to identify and treat increasingly esoteric ‘environmental’ or ‘biomedical’ causes (Rimland, 2004.). The ‘vaccine controversy’ is the most well-known dividing-line here: see Offit (2010) for an account.

9

centrally-driven research strategies (the UK Government’s Autism Research Coordination Group first met in 2005), and, finally, the law (in 2009, the UK Parliament enacted an ‘Autism Act,’ mandating a countrywide strategy for the disorder, and requiring guidance to be produced for local authorities on delivering services) (Great Britain, 2009).
And yet, as Stuart Murray has pointed out, as much as autism has emerged as a ‘pressing issue of current concern’ – so it also remains a ‘somewhat abstracted, unsourced, alien phenomenon’ (2008: 2). What Murray means by this is that despite the increasing visibility of autism, and in particular despite concerted efforts to strategize research activity around it (Charman and Clare, 2004), there is still no known single, identified biological cause, marker or descriptor of autism’s core symptoms. Among other things, this means that diagnosis is done using a quite broad behavioural assessment only. Which in turn, raises questions about what, exactly, it is that’s being diagnosed in such growing numbers, and even whether ‘autism’ describes a biologically coherent phenomenon in the first place (Geschwind and Levitt, 2007; Happé and Ronald, 2008). This has sometimes made autism research frustrating for scientists at the coal-face: ‘the field of autism,’ says the psychologist, Laura Schreibman, ‘is littered with the debris of dead ends, crushed hopes, ineffective treatments and false starts…we are dealing with a devastating disorder for which we have few answers to date’ (2005: 7). It is striking that even as autism has emerged as a focus of popular concern, and even as it is located within both the bodies and habits of an ever-larger number of people – so it has continued to resist any sort of easy clinical or biological definition. And for a diagnosis that seems most likely to mark a disorder of brain development, particularly, this absence has been felt with special keenness by neuroscientific researchers on autism: in a recent review, Lord and Jones noted that while there had been great hopes for both structural and functional neuroimaging findings, for example, the truth is that ‘these approaches seldom provide data on an individual level, do not yet have wellaccepted standards or replicability across time or site…and have rarely addressed questions of specificity of findings to ASD’ (2012: 491).
This is the context in which New Scientist was interested in a paper published on a potential brain biomarker for autism (Duffy and Als, 2012). ‘At present,’ the article pointed out, ‘autism is diagnosed by carefully observing a child's behaviour and assessing their clinical history’ (Coghlan, 2012). Now, however,

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    NEWSLETTER Vol. 57, No. 4 November 2012 Animal Behavior Society Sue Margulis, Secretary A quarterly Department of Animal Behavior, Ecology, and Conservation publication Department of Biology Canisius College, Buffalo, NY 14208 Lindsey Perkes-Smith, Editorial Assistant Department of Animal Behavior, Ecology, and Conservation Canisius College, Buffalo, NY 14208 2012-2013 ABS OFFICERS VOTE! VOTE! VOTE! 2013 ABS ELECTIONS President: Robert Seyfarth, Department of Psychology, University of Pennsylvania, 3815 Walnut Please take the time to vote in the upcoming election! Street, Philadelphia, Pennsylvania 19104-6196, USA. You will receive an e-mail from the Central Office, E-mail: [email protected] containing a link that when clicked upon will take you First President-Elect: Dan Rubenstein, Department of to the ballot on Survey Monkey. You will receive this Ecology and Evolutionary Biology, Princeton e-mail provided the Central Office has your e-mail University, Princeton, NJ 08544, USA. Phone: (609) address and you were an active ABS member as of 258-5698. E-mail: [email protected] November 1, 2012. A ballot is enclosed in this Second President-Elect: Regina H. Macedo, newsletter, and if you vote by regular mail, your Departamento de Zoologia, Universidade de Brasília name MUST be on the envelope. 70910-900 - Brasília - DF – Brazil. Phone: +55-61- 3307-2265. E-mail: [email protected] CANDIDATES FOR Past President: Joan Strassmann, Department of 2013 ELECTION OF OFFICERS Biology, Washington University in St. Louis, One Brookings Drive, Campus Box 1137, St. Louis MO See biographies of candidates and the ballot at the 63130, USA. Phone: (314) 935-3528.
  • Speaker Biographical Sketches Speaker Biographical Sketches

    Speaker Biographical Sketches Speaker Biographical Sketches

    SPEAKER BIOGRAPHICAL SKETCHES SPEAKER BIOGRAPHICAL SKETCHES Mind Reading: Human Origins and Theory of Mind Mind Reading: Human Origins and Theory of Mind October 2013 October 2013 carta.anthropogeny.org carta.anthropogeny.org Ralph Adolphs is the Bren Professor of Pychology and Neuroscience, as well Michael Arbib is the Fletcher Jones Professor of Computer Science, as well as as a professor of biology at the California Institute for Technology (Caltech). a professor of biological sciences at the University of Southern California. Dr. Dr. Adolphs received his bachelor's degree from Stanford University, and his Arbib is a pioneer in the interdisciplinary study of computers and brains, and Ph.D. in neurobiology from Caltech. He did post-doctoral work with Antonio has long studied brain mechanisms underlying the visual control of action. For Damasio at the University of Iowa, beginning his studies in human more than a decade, he has devoted much energy to understanding the neuropsychology, with a focus on the recognition of emotional facial relevance of this work, and especially of mirror neurons, to the evolution of the expressions. Dr. Adolphs also holds an adjunct appointment in the Department language-ready brain. Dr. Arbib is an author or editor of 40 books, of Neurology at the University of Iowa. including How the Brain Got Language (Oxford, 2012). Tetsuro Matsuzawa is a professor at the Primate Research Institute of Kyoto Jason Mitchell is professor of psychology at Harvard University. Dr. Mitchell University, Japan, and president of the International Primatological completed his undergraduate degree at Yale University and earned his Ph.D.
  • The Theosophical Seal by Arthur M. Coon the Theosophical Seal a Study for the Student and Non-Student

    The Theosophical Seal by Arthur M. Coon the Theosophical Seal a Study for the Student and Non-Student

    The Theosophical Seal by Arthur M. Coon The Theosophical Seal A Study for the Student and Non-Student by Arthur M. Coon This book is dedicated to all searchers for wisdom Published in the 1800's Page 1 The Theosophical Seal by Arthur M. Coon INTRODUCTION PREFACE BOOK -1- A DIVINE LANGUAGE ALPHA AND OMEGA UNITY BECOMES DUALITY THREE: THE SACRED NUMBER THE SQUARE AND THE NUMBER FOUR THE CROSS BOOK 2-THE TAU THE PHILOSOPHIC CROSS THE MYSTIC CROSS VICTORY THE PATH BOOK -3- THE SWASTIKA ANTIQUITY THE WHIRLING CROSS CREATIVE FIRE BOOK -4- THE SERPENT MYTH AND SACRED SCRIPTURE SYMBOL OF EVIL SATAN, LUCIFER AND THE DEVIL SYMBOL OF THE DIVINE HEALER SYMBOL OF WISDOM THE SERPENT SWALLOWING ITS TAIL BOOK 5 - THE INTERLACED TRIANGLES THE PATTERN THE NUMBER THREE THE MYSTERY OF THE TRIANGLE THE HINDU TRIMURTI Page 2 The Theosophical Seal by Arthur M. Coon THE THREEFOLD UNIVERSE THE HOLY TRINITY THE WORK OF THE TRINITY THE DIVINE IMAGE " AS ABOVE, SO BELOW " KING SOLOMON'S SEAL SIXES AND SEVENS BOOK 6 - THE SACRED WORD THE SACRED WORD ACKNOWLEDGEMENT Page 3 The Theosophical Seal by Arthur M. Coon INTRODUCTION I am happy to introduce this present volume, the contents of which originally appeared as a series of articles in The American Theosophist magazine. Mr. Arthur Coon's careful analysis of the Theosophical Seal is highly recommend to the many readers who will find here a rich store of information concerning the meaning of the various components of the seal Symbology is one of the ancient keys unlocking the mysteries of man and Nature.
  • SHOCKS DRAFT Ricardo Godoy

    SHOCKS DRAFT Ricardo Godoy

    CENTER FOR GLOBAL DEVELOPMENT + SUSTAINABILITY THE HELLER SCHOOL AT BRANDEIS UNIVERSITY SHOCKS DRAFT Ricardo Godoy GDS WORKING PAPER SERIES / GLOBALIZATION AND INDIGENOUS COMMUNITIES / NO. 2021-02 / JUNE 01, 2021 CENTER FOR GLOBAL DEVELOPMENT + SUSTAINABILITY GLOBALIZATION AND INDIGENOUS COMMUNITIES WORKING PAPER 2021-01 This paper is a product of the Center for Global Development and Sustainability’s work on globalization and indigenous communities. The GDS Working Paper series seeks to share the findings of the Center’s ongoing research in order to contribute to a global dialogue on critical issues in development. The findings may be preliminary and subject to revision as research continues. The analysis and findings in the papers are those of the author(s) and do not necessarily represent the views of the Center for Global Development and Sustainability, the Heller School for Social Policy and Management or those of Brandeis University. 1 DRAFT: 6/1/2021 Chapter 11 Shocks Summary: Aims: [a] To identify harmful shocks adults had the past year and assess the frequency of bedridden days afflicting them the past week, [b] identify how adults managed shocks, [c] estimate the shocks’ financial and psychological costs, and [d] assess trends of [a]- [c]. I equate psychological costs with negative feeling (e.g., anger) the past week and mirth in the interview. Methods: Descriptive yearly statistics (2002-12) were used to assess levels and regressions to estimate trends. Data: The core data comes from surveys of the panel study (2002- 10), enlarged with the baseline (2008) of the randomized-controlled trial (RCT) on village inequality and an RCT on savings (2011-12).