Autism
Autism
Stuart Murray
Autism is the first book on the condition that seeks to combine medical, historical and
cultural approaches to an understanding of the condition. Its purpose is to present a
rounded portrayal of the ways in which autism is currently represented in the world, It
focuses on three broad areas: the facts of scientific research, including new ideas
surrounding research into genetics and neuroscience, as well as the details of diagnosis
and therapy; the history of the condition as it developed through psychiatric approaches
to the rise of parent associations, neurodiversity and autism advocacy; and the fictional
and media narratives through which it is increasingly expressed in the contemporary
moment. Accessible and written in clear English, Autism is designed for student
audiences in English, Disability Studies, Cultural Studies, History, Sociology, and
Medicine and Health, as well as medical practitioners and the general reader. Autism is a
condition surrounded by misunderstanding and often defined by contestation and
argument. The purpose of this book is to bring clarity to the subject of autism across the
full range of its manifestations.
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The Routledge Series Integrating Science and Culture
Editor: Lennard Davis, University of Illinois at Chicago
The Routledge Series Integrating Science and Culture aims to reunite the major
discourses of science and the humanities which parted ways about 150 years ago. Each
book picks an important topic that can best be understood by a synthesis of the best
science and the best social and cultural analysis. In an age when more and more major
political and life decisions involve complex understandings of science, medicine, and
technology, we need to have a bioculturally sophisticate citizenry who can weigh in on
these important issues. To that end these books aim to reach a wide swathe of people,
presenting the information in readable, illustrated, succinct editions that are designed for
classroom and scholarly use as well as for public consumption.
Forthcoming
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Autism
Stuart Murray
University of Leeds, UK
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COPYRIGHT PAGE
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All rights reserved. No part of this book may be reprinted or reproduced or utilised in any
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infringe.
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For Lucas and Yann - my teachers. Again, but
more so…
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SERIES FOREWORD
The Routledge Series Integrating Science and Culture aims to restore connections
between the sciences and the humanities, connections that were severed over 150 years
ago. This mutual exclusion was done in the name of expertise on the part of science and
defended in the name of preserving values and morality in the world of humanism. In
some sense, each side was seen as the societal enemy of the other. From the humanists’
perspective, scientists threatened to make the world a colder, more efficient place lacking
in feelings and values. From the scientists’ viewpoint, humanists were interfering with
progress by injecting bleeding hearts and unreasonable fears into an essentially rational
process.
But the reality is that now, in the 21st century it is getting harder and harder for humanists
to comment on civic and social matters without knowing something about science,
medicine, and technology. Suddenly there is the need to understand stem cells, brain
scans, DNA technologies, organ transplants, ecological outcomes, and the like in order to
be a knowledgeable citizen, legislator, or scholar. Likewise, scientists routinely include
the ethical, social, cultural, and legal in their research protocols and scientific articles.
The divide between the “two cultures” described by C. S. Lewis in the 1950’s is less and
less possible in the 21st century. On the ground, humanists and scientists are again in need
of each other.
To that end, the books in this series will focus on the cultural side of science and the
scientific side of culture. David Morris and myself have coined the term “biocultural” to
indicate this new realm of study and critique. In that spirit, Stuart Murray’s book on
autism aims to bring together in a truly interdisciplinary sense the best of both
knowledges on this pressing social and scientific subject. A proof of the validity of the
biocultural claim is that this book, or really any complete book, on autism can only be
written using this complex kind of analysis. How much sense would it make to write a
book on autism that was purely about the neurological or the biological when the
complex phenomenon of autism is best understood in a multi-faceted perspective that
includes the social, psychological, political, and scientific? Would it ever be possible to
write about autism without including the voices of all parties involved: autists, doctors,
parents, and policy makers? How could we understand the network of effects of autism
without considering the representations of the condition in the media and in literature and
the arts? Murray’s book is not an artificial welding of disparate discourses but through
its necessary eclecticism offers to give us the best, well-rounded description and
explanation of autism to date.
Lennard Davis
Series Editor
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Table of Contents
Acknowledgements
Preface
2. The body, the brain and the person: biology, neurology and self
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3. Psychoanalysis, Bruno Bettelheim, parents and blame
1. A lack of consensus
2. Causing Autism
Bibliography
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Acknowledgements
I am very grateful to Lennard J. Davis for the initial conversation which led to the
development of this book, and for all his support through the writing and publication
process. Thanks to the staff at Routledge in New York as well and to the readers of the
manuscript, Ralph Savarese of Grinnell College and Joseph Straus of CUNY Graduate
Center. I would like to thank all the various individuals and associations that provided me
with material and details which went in to the book, especially the National Autistic
Association, the Wellcome Trust, Stephen Wiltshire and family, Michael Baron, Indrani
Basu, Bridget Bennett and Ralph Smith. In September 2010, as I was working on the
book, I was invited by Michael Orsini and Joyce Davidson to speak at a Critical Autism
Workshop in Ottawa, and I would want to thank all the participants there, but especially
Michael and Joyce, for the stimulating environment that event produced.
I owe longstanding debts to Clare Barker, Kirsty Bennett and John McLeod for
their friendship and support, which goes beyond the writing of books. Kevin, Marion and
Tim McLoughlin make the most wonderfully supportive of families and I would
especially want to thank them for helping me to find time in Cornwall in the summer of
2010. This book is, of course, for the boys, but it is for Megan as well, without whom
Stuart Murray
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Preface
My youngest son approaches me with his arms outstretched, asking to be carried. This is
unusual; he is 11 years old and this kind of behavior, which was common when he was
younger, has by now largely vanished. It is, however, a good opportunity to engage with
him physically, something that is not always possible given that frequently he is not keen
on being touched; so – telling him how heavy he is (despite the fact that he barely eats
anything) – I scoop him up. I stand still: his face is now close to mine, allowing me an
excellent opportunity to look closely at him. He draws his arms together between our
chests and leans into me, humming and singing and occasionally making surreptitious
glances at my face. Then, seeing I’m waiting for further instructions, he leans again, this
time to one side, a little nod to the direction he wants me to carry him. It’s out to the
garden, so off we go, across the patio and up to the steps on to the grass. I stop and,
faking the world-weary tone parents always use when they have no clue about their
child’s wishes, ask him where we’re going. Another lean directs me to the trampoline at
the back of the garden, although this is not so much an answer to my actual question as a
response to the fact that I had stopped walking, a touch of impatience on his part.
Trampolines and autism go together a lot; there is a certain kind of pleasure in the
physical sensation, the proprioceptive feedback, which comes with the repetition of the
bouncing and the feeling of the body in motion. When he was younger, my son was an
endless trampolinist, although his enthusiasm for this has diminished a little as he has
grown older. I set off again, telling him that I know full well he is perfectly capable of
walking to the trampoline on his own, but in fact loving this chance to be close to him.
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Stumbling somewhat now, we reach the trampoline and, using his body to make his
meaning clear, he asks that I put him on, a request followed by a grab of my hand that
signals I’m wanted on there as well. So up I climb. We sit together for about 5 seconds
before it’s made clear that I have to get off, get him off, and then carry him back down
the garden to the house. We do this whole process twice, a there-and-back trip
accompanied each time by various happy burblings and vowel sounds on this part, and by
grumbling on mine, before it all stops and he happily lets me go and turns to another
activity.
What to make of this event? There are, of course, two versions of it. On my son’s
part it appears to be very pleasurable five minutes or so, a succession of moments that
leaves him deeply content. Why that might be, what combination of (maybe) physical
sensation, memory and present moment, is for him to know. From my point of view, and
The question as to whether it is meaningful is, I sense, one that seems obvious; the
anecdote invites interpretation and reading, it seems to demand to be turned into some
kind of ‘account.’ Despite this being the case, however, the truth is that it probably isn’t
functioning in this way. Though I might be puzzled by the unusual nature of what
interruption in a routine that is normally strictly adhered to, I feel that the temptation to
make it somehow symbolic is an error. Too often we assume that autistic behaviour
comes laden with meaning, that it somehow cannot be as random and casual, as open, as
any other behaviour. With autism, we want to interpret because we don’t know. But such
interpretation here may well not be necessary in understanding why this small event
might be pleasurable, or seeing how it both carries insight and resists analysis. In the way
in which it is not symbolic, it is instructive; part of me likes that which stays beyond my
reach here, because it is an aspect of my son’s character, part of what makes him the
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complex person he is. And maybe he has his version of the same. The fact that what we
both feel can’t be completely communicated doesn’t mean that it cannot be understood,
quite possibly on both sides, and understanding it does not require a complete sense of
what it might mean. I sense that an experience such as this is not an uncommon autism
episode, and maybe we treat the condition with more respect and integrity if we admit to
its inherent openness rather than assume it offers itself up for an interpretation that, in the
language of critical analysis, could only be articulated from one perspective anyway,
This book recognizes that understanding and talking about autism is complex. It is
written from a point of view that combines scholarly interest and personal experience, but
books on autism come from either disciplines associated with medicine, such as
general books on the condition are written by psychologists in particular. I have things to
say about medicine, psychology and education, but central to my sense of how we might
understand autism is a desire to place the condition in cultural contexts, to see that the
various opinions and theories that surround it are part of a wide fabric of narrative,
representation and characterization. This does not mean that the book will abandon the
views of medicine to embrace autism as a set of stories, but it does mean that it will see
medical research on the condition as one kind of story, and it will stress the benefits of so
doing. In what follows I will both question many of the medical and scientific
understandings of autism and see others as being central to the way in which we might
imagine a future for those who have the condition. A cultural approach to the condition
allows for both perspectives, and these are themselves simply part of the larger matrix
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The desire to understand autism means that, above all things, we want to make
sense of it. My anecdote above suggests, however, that this may not necessarily be the
right question. Maybe it is better to say that those who are not autistic want to engage
with autism, and although this may well be difficult, it is also a situation that is
potentially hugely productive. In addition, it is not one in which we need to rush into
interpretations of what the condition is. Autism is frequently talked about, but it is rarely
listened to. In wanting to integrate scientific and cultural attitudes towards the facts that
surround the condition, we need to articulate more theories, and bring to bear more
methods of enquiry, than we do at the current moment. One of these is an approach that
seeks to critique the dominant and orthodox sense of what we think we know; another is
the belief that there is much from autism that we can learn. My goal in writing this book
will assert, language matters. The language surrounding autism, and disability more
generally, is itself often a minefield full of argument and opinion. Many claim that the
term ‘autistic person’ is demeaning, because it suggests that the individual concerned is
somehow defined by their autism, and that this is prejudiced and problematic. For the
majority who work in social or healthcare, and in education, the phrase ‘person with
autism’ is preferred, since it indicates a removal of any such stigma. At the same time,
however, the ‘autistic person’ label is one used by many people with the condition
precisely because they do consider their autism part of their being, and there is also the
potential problem with ‘person with autism’ that it suggests – too easily – that the autism
might be removed from the person, as if to have autism is to have a cold or some disease.
I can see both sides of the argument, and so this book uses both terms, not in any strict
way but rather as they came to me in the writing. Some readers may well feel that these
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concerns over vocabulary are pedantic and fussy, and that it really doesn’t matter which
phrase is used. But, as we will see, the ways in which autism is talked about are vital if
we are to understand how we think of the condition at this moment in time; and if it
seems that this is part of an over-sensitive argument, this book will show that arguments
about autism are integral to our contemporary discussions, and that sensitivity is equally
important. In the end, my use of language in the book, as with all other aspects of its
content, is directed towards a greater understanding of, and interaction with, autism. That
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Part One: The Facts
What we Know… or Don’t.
We know more about autism now than at any point in history. We know that it is a
it affects the ways in which information is processed in the brain. We know that,
condition, and that it affects far more people than was believed even 10 years ago. We
know that autism is a spectrum condition, and as such takes many forms, from the
non-verbal to the highly talkative for example, or from those who revel in sensory
stimuli to those who find such encounters painful and distressing. We know that there
seems to be more autism about, that the condition is diagnosed, highlighted, discussed
and represented as never before, even though we also know that there have always
been people with autism but that we chose not to label them as such until the recent
past. We know that most people with autism are considered disabled but that some
choose to see themselves rather in terms of difference, and reject the idea that they
‘suffer from’ their condition. We know all these things and more, and yet at the same
time, if we’re honest, the foundational observation we might make, the ‘central fact’
about autism with which we should probably start, is that we don’t know very much
about it at all.
We don’t know what causes autism. For all that neurology continues to help us
understand how the brain is the site of the condition, we don’t know fully which brain
areas are responsible for the ways in which those with autism process their
no real idea which genes are those connected to autism. We have established methods
that enable us to diagnose the condition, processes of specialist observation that work
through reference to established guidelines, but we don’t know if such techniques are
1
the best way for us to identify the manner in which autism manifests itself in any one
individual; we simply believe them to be the most useful at this present moment in
time. We don’t know whether environmental factors play a part in autism or, if they
do, how we might establish the extent to which this is the case. And, putting two of
our ‘don’t knows’ together, we don’t know if, or how, possible genetic and
environmental factors interact, though some suspect that they might. Lastly, given that
much of what we do know about autism comes from recent research, we don’t know
much about autism and the future. We know very little about the condition and
ageing, for example, and (to discuss the issue in different terms) we don’t know what
the future will need in terms of educational or social health care policies for those
with autism.
In this first section, I want to extend this question of ‘what we know’ and
outline and explore the ‘facts’ of autism. I want especially to discuss the condition as
it is understood by medical knowledge, and the ways in which the terms of such
understanding have created a sense of what the condition is and how it works in the
world. When the word ‘autism’ is mentioned, I suspect that there is an immediate and
seemingly natural assumption that the point of departure for further thinking about
what it is, the first frame in which to consider it, is that of the medical. Autism is, after
‘disease,’ and we believe these terms to be foremostly medical: medical research into
genes and the workings of the brain helps us to further the understanding of autism’s
genetic patterning and its neurological makeup, and medical practice in terms of
psychology and healthcare aid in the diagnosis and ongoing support of those who are
autistic. Medicine is, it appears, our best guide for understanding autism at any given
moment in time; medical research is vital in determining what autism is and how it
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functions. As we will see later in this book, it has played a significant role in
alleviating some of the controversies and fanciful notions that surround the condition.
knowledge and its methods with the limitations of such knowledge mentioned above.
We need to understand that, when faced with the complexities of what constitutes
enquiry that allow for research or practice to function. Such processes, in turn, mean
that the picture of autism that emerges from the various lenses of medical activity, for
all that it is essential, is a partial one that contains its own emphases and biases. As
vaccine expert Paul Offit says in Autism’s False Prophets, his book on many of the
debates surrounding the condition in the last decade: “People think of science as a
body of knowledge or scientific societies or scientists. But it’s really just a way of
thinking about a problem” (Offit 2008, 206). If we are to gain a true sense of what
autism means to us in the here and now, we have to accept the provisional nature of
much medical investigation, its ‘way of thinking,’ even as we look to it for the clues
that will enable us to know more about what makes up the condition. We have to ask
The body, the brain and the person: biology, neurology and self
Much current medical research into the origins of autism centers on the idea of brain
difference and what is sometimes termed ‘atypical brain structure.’ In recent years,
advances in the ability to study living brains (as opposed to those accessed only
through autopsy) through magnetic resonance imagery (MRI), and especially the
the workings of the brain as it is engaged in a task or problem solving, have allowed
3
for a number of suggestions as to the possible neurological details of autism. Studies
show that the brains of those with autism sometimes work in ways that are noticeably
different to those who are not autistic, and especially that specific brain regions work
Science has shown that what is sometimes referred to as ‘the social brain,’ which
includes the medial prefrontal cortex and the amygdala, is frequently ‘underactive’ in
the brains of those with autism. Equally, studies have produced evidence that autistic
brains are literally differently shaped to those of individuals without autism. In the 2
to 3 years following birth, the brains of those who have autism grow far more rapidly
than brains in those children who are not autistic, and on average autistic brains are
bigger and heavier than those that show no signs of the condition.
In addition and possibly related to these questions of activity and size, there is
increased cell density in certain parts of the brains, the hippocampus and amygdala
included, of those with autism, along with other structural differences in the
dendrites). Some young children with autism have what is termed an ‘overgrowth’ of
white and grey matter in the brain’s frontal lobes, although this rate of growth,
especially of white matter, then seems to fall away. Given that grey and white matter
is the material which makes up nerve cells and connections, this research (and the
other studies on brain structure and function) has led to the hypothesis that the
physical make-up of the brain can show us that it is the processes of connectivity that
are different in autism, and that this can be traced to specific brain areas. In August
2010 the national press in the UK widely reported the details from an article in the
4
Journal of Neuroscience, in which scientists at King’s College in London outlined
screening process that will aid in the processes of diagnosis (Rose, 2010; Ecker,
Marquand et al, 2010). The scan works by providing images of thousands of brain
genetics, is done in the name of etiology, the study of the cause of diseases. It is a
slow and complex business of investigation, and for all the advances that have been
made it is wise to remember that the exact nature of how they might contribute to the
make-up of autism is still an issue for conjecture. Knowing that brain structure or
activity is different in those with autism does not locate this knowledge as a
foundational cause of the condition; it does not necessarily clarify at what point in the
situation where X might mark the spot in terms of causation, and as such the evidence
right context, to be lined up in the right manner with other factors. Does, for example,
knowing that the siblings of children with autism have up to a 7 percent probability of
also being on the autistic spectrum (a huge increase over that expected in the general
clusters,’ give us information that should be considered before or after, as more or less
important, than research on the brain? For all the medical research facts we have
about autism, knowing in which order they might come remains a problem that has, as
yet, no solution.
5
There is another consequence of the increased medical and scientific research
into autism, one that would, in all probability, not really interest those engaged in
such work for whom it might not appear relevant. It is to do with the idea of the
condition that is produced as a result of such concentration, and especially that idea in
kinds of images produced by MRI processes; we have seen the ‘cross sections’ of the
brain with various parts highlighted in different colors – red or green – and, even
though these are not actual photographs but are rather images produced through the
they signify activity or work, as actual snapshots of the brain in performance. The
notion that autism might somehow be found there, in those colored patches, is very
different from previous conceptions of the condition, where it was more common to
assume that the individual person hosted his or her autism in some way. I will outline
the history of the development of medical thought about autism fully in Part Two, but
it is worth noting here that the increasing turn to neurological and genetic
explanations of the condition replaces a considerable body of work that assumed that
autism was psychogenic in origin, that its causes were to be found in the mind. In
thinking about autism, this movement from psychology to neurology leaves the
question of how the actual person with autism might best be considered as a difficult
reinforce some common ideas about autism that are in fact cultural in origin; that it
autistic brain is like a computer’s hard drive. The flashing colors of MRI scans further
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that sees autism as some form of technology. In fact, we should view such depictions
of the condition as social and cultural terms formed by the trickle down of scientific
thought into a broad based media, and then into the realm of public debate. This is a
subtle observation, and might not be considered as a ‘fact’ in the same way that
research into mirror neurons evidently appears to be, but it is nonetheless a product of
the latest medical work on autism that transforms how we think of the condition in
It is in thinking through the consequences of this for the person with autism
that we might most profitably understand this way in which the condition has become
characterized by science and medicine. After all, autism is only of interest because of
the fact that it affects people, and if we cannot extend what we know about it to make
a real difference to individual lives then there is not much point to any research on the
autism, that they are automatons, for example, somehow robotic, or even that they are
‘alien’ and in some way non-human, issues I will expand upon in Part Three of this
book. To make the issue clearer by coming at it from another direction, we might also
note that the dominance of a clinical scientific approach to autism makes it easy for
other types of questions about the condition to drop off the agenda – how do
individuals with autism express their spirituality, for example? Or, what kind of
parent does an autistic adult make? That people with autism can be religious is
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discussed in terms of being an ‘abnormality,’ or dominated by the idea that it
The idea of an ‘autistic person’ then, or an ‘autistic self,’ is one that can be lost
within the micro-details of the latest scientific research. The ‘facts’ of such research
tend to abstract the condition from its connection to people, to make it into an object
of enquiry. Of course this is the way that medicine necessarily works, but I think that,
some people’s personality, we can immediately see that there is a difference between
a person with autism and, say, a person with cancer (another medical condition that is
abstracted and objectified in popular discussion). In part, the very idea of an autistic
person is a philosophical one, and recent work in Philosophy has started to explore
what Deborah R. Barnbaum has termed “autistic integrity” (Barnbaum 2008, 204) as a
valid and ethical notion of autistic difference, discussing the concept of an autistic
sense of self and a lived life ordered by that self. But the person with autism is also
current formations of medical research is that links to the normality of autism, the fact
of it understood in terms of daily living and of the everyday, can too easily be lost. It
is worth remembering that, for nearly all of us, autism is far more likely to be
idea of the future in which more research, more knowledge and facts, will transform it
for the better. This is in truth not so much a case of how medical research, which is as
haphazard as any other, actually works but rather how it is seen to work by a broad
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public. Mapping the risk genes that might be associated with autism, for example, for
all that such work is very much in its first halting phases, appears crucial and
about such genes will improve our wider understanding of the condition, and
consequently of the lives of those associated with it. At the same time, however, and
as we will see in Part Three it is equally likely that the outcome of such genetic
pause on the logic of meaningful ‘progressive’ research for a second, we can see that
lives will come more quickly not with high-level medical science, but rather with
example, given that these are arguably more concrete, and almost certainly faster,
ways to raise consciousness and produce discernable results. In addition, the idea of
and foremostly a ‘problem’ and something that requires change. That this is, in some
cases, true is beyond question, but it is the nature of medical research’s gesture
towards the future here, its claim to make lives better, that runs the risk of stopping us
from asking exactly what autistic lives are like in the here and now.
Although much of the above offers a critique of the methods of much medical
research in assessing autism, the debate about such methods does of course go on
within the scientific research community as well. Scientists such as Laurent Mottron
and Michelle Dawson (who is herself autistic) have produced work that seeks to
particular (Mottron et al. 2006; Dawson et al 2005). As both have noted, often the
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deficit (in, for example, the use of scales of intelligence in measuring autistic
capabilities). Equally, Dawson and Mottron, along with colleague Jemel Bouthiena,
have challenged the trend in recent autism research that has focussed on the ability of
those with the condition to process social information through the recognition of
facial expressions. This ‘face processing’ has been seen as a marked advance in recent
science on autism, but Bouthiena, Mottron and Dawson, in a review of the empirical
evidence on the topic, have demonstrated that the abilities of autistics to read facial
knowledge are not only challenged from a culturalist perspective that sees them as
part of the telling of a certain kind of story, they are revised from within by
The facts of medical research into autism are, then, more complex than they
might seem at first, but it is actually not the research arena in which medicine’s
interaction with autism is most of interest. That space properly belongs to the business
surrounding who does, and who does not, have autism. And it is the question of the
decision that is so vital here. The brain scan techniques being developed at King’s
College London may well herald a breakthrough, but as yet – unlike other conditions
there is no straightforward way in which its presence can be read. Because of this, at
the moment diagnosis is an evaluative process that nearly always requires the work of
more than one specialist. This process is about discussion, opinion, consideration and
the construction of a narrative that surrounds the individual. As such, its status as a
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‘fact’ is obviously less than clear. Nevertheless, most people with autism are
understood to be autistic because they have been diagnosed as such, so its central
nature in any discussion of the condition needs to be explored if we are to know quite
The diagnosis of autism is a complex business. In his small book on the condition,
largely aimed at parents of children who are either thinking of going through, or have
writes that it “is often carried out by a multidisciplinary team, typically taking 2 or 3
hours based on interview and observation” (Baron-Cohen 2008, 37). The interview,
he gives some examples of the kinds of questions parents might be asked about their
children in order to produce evidence that will aid the diagnostic evaluation. These
include queries such as: “Have they found it difficult to make and keep friends?”; “Do
they show a lack of normal social awareness?”; “Does the person have trouble
“Does the person frequently say (as well as do) the wrong thing in a social situation
(committing faux pas)?”; and “Do they resist change?” (Baron-Cohen 2008, 38-39). It
should also be noted that, frequently, a single interview is insufficient to gather all the
information needed for diagnosis, and that, following the interview and evaluation
processes, the specialist team is often required to meet to produce the agreed decision.
11
Baron-Cohen’s full detailed list of the questions and topics that might be
pages of his book. Any parent coming to it, in advance of such an appointment, would
feel empowered through access to this kind of knowledge. And yet, for all that this
One day, the hope is that accurate diagnosis will not depend on the
measured in the blood and in other bodily tissue or cells. But, for now,
‘Vagaries’ is the key word here, even more so than ‘subjective.’ The shifting terrain
of what passes at any given time for knowledge about autism (once again, that which
classic example of a medical ‘best practice’ moment, one in which the expertise of
the here and now is enacted even as that specialist knowledge necessarily admits to
its limits. In her book on diagnosis, Lisa Sanders entitles her first chapter ‘The Facts,
and What Lies Beyond’, picking up on exactly this limitation inherent in the search
for diagnostic precision. To ascertain “more than just the facts” (L. Sanders 2010, 6)
12
is, Sanders claims, vital for proper diagnosis. She asserts that the central element
necessary in such a process is the ‘patient story,’ noting that “the great majority of
medical diagnoses – anywhere from 70 to 90 percent – are made on the basis of the
Although this is well established, far too often neither the doctor nor the
patient seems to appreciate the importance of what the patient has to say in
the making of a diagnosis. And yet this is crucial information. None of our
high-tech tests has such a high batting average. Neither does the physical
exam. Nor is there any other way to obtain this information. Talking to the
patient more often than not provides the essential clues to making a diagnosis
With autism, of course, the whole notion of the ‘patient story’ is complicated.
conversations with their families, although this is less the case with the diagnosis of
Asperger syndrome where the kinds of dialogue of which Sanders speaks are more
possible. It remains true, however, that in the frequent absence of the ‘patient story’
for the individual with autism the narrative is then supplied by the diagnostic method
itself, which inevitably fills in the gaps with which it finds itself faced. In fact, if we
what arguably emerges as being most interesting about the business of diagnosis in is
13
apparent that it is full of descriptions of ‘difficulties,’ ‘limitations’ and assumptions
about behavior being ‘wrong’ or deviating from that which is considered ‘normal.’
And here, the point we need to remember is that this is an account of the expert
baseline judgements involved in deciding if any individual does, or does not, have
in fact built in, during diagnostic evaluation, to the definition of what the condition is
perceived to be.
produced through the processes of diagnosis has obvious consequences for the ways
evaluation begins with built-in assumptions about the ‘problems’ of autistic behavior,
view any individual with autism outside of these central frames of reference. If it
appear rational that the condition is one that requires ‘correction,’ it also makes the
idea of ‘everyday autism,’ the daily business of a life lived being autistic, one that is
The list of questions and topics given by Baron-Cohen outlines the types of
subjects that may well come up for consideration during diagnosis, but the evaluation
team will not have simply assembled its own version of such criteria to assist its
work. The yardsticks that guide the diagnosis of autism appear in what we might
14
recognize as the twin ‘bibles’ of such processes, the American Psychiatric
Classification of Diseases (ICD), with a usage in much of the rest of the world. Each
before a completely new version is produced; so, for example, the current ‘working’
2000. The new full edition of the Manual, DSM-V, is scheduled to appear in 2012.
With the ICD, the current version is ICD-10, the tenth revision of a manual that has
its origins in the nineteenth century. It has annual updates approved by regular
can quite rightly be considered the central diagnostic ‘facts’ of autism, and are worth
separate from that for Asperger Syndrome and comes under the heading of ‘Autistic
A. A total of six (or more) items from (1), (2), and (3), with at least two
15
(a). marked impairment in the use of multiple nonverbal behaviors
developmental level
(a) delay in, or total lack of, the development of spoken language
language
16
(a) encompassing preoccupation with one or more stereotyped and
or focus
routines or rituals
areas, with onset prior to age 3 years: (1) social interaction, (2)
imaginative play.
[Caption: ‘Reprinted with permission from the Diagnostic and Statistical Manual of
Psychiatric Association.’]
17
syndrome. As well as a variant of the kind of diagnostic checklist provided in the
Childhood Autism
the age of three years, and (b) the characteristic type of abnormal
Atypical Autism
18
Asperger’s syndrome
The different kinds of description work in different ways. The DSM-IV example
here provides a literal checklist that can be followed by any health professional
making a diagnosis. The ICD-10 definitions here display how such manuals also give
all-round surveys of differing forms of autism, lacking the detail of the DSM. In its
own way, however, each type of prose contains the latest knowledge about autism,
offering an update on the history of the condition as it has moved through different
levels of understanding (we can look back and see, for example, that it was in only in
DSM-III, published in 1980, that autism was differentiated from childhood psychosis
and considered as a condition in its own right). These accounts are informative, and
yet precisely because autism remains symptomatic and is something that has to be
pieced together through a reading of any individual within the above observational
phrases, we can see that that the diagnostic classifications actually work to paint a
certain kind of picture of how an individual with autism is characterized. The ways in
19
which the evaluated individual emerges through the diagnostic prose is clearly an
from the medical norm are all associated with the negative. Just to take the DSM-IV
both the DSM and the ICD definitions, their status as guides for the clinicians using
them, they have to be seen as documents that create diagnosis as a process in which
the things that are looked for, the signs of the autism as it were, are located and
understood within this deficit model. The ‘abnormality’ of which both manuals speak
is here grounded as a difference that can only be read within the logic of the condition
as a problem. And, given that it is always the case that you tend to see what you are
asked to look for, the reality is that autism is created as a phenomenon that is
to see how the logic of reading diagnosis in this fashion plays itself out. As a
techniques that aid diagnosis through what he terms a process of ‘measuring’ autism.
The Autism Spectrum Quotient (AQ) that he and his research team at the University
children and adults. Through the use of a questionnaire, it calculates a ‘score’ for any
individual that might suggest a referral for a diagnosis is warranted. But, in expanding
20
shows the ways in which the deficit model of autism becomes easily conflated with
ideas about how the condition then manifests itself within any one individual. “A high
AQ score alone,” he writes, “is not a reason to be referred for a diagnosis. In addition,
there has to be evidence that the person is ‘suffering’ in some way (e.g. they are being
bullied, or are becoming depressed, or have high levels of anxiety, or are not fulfilling
some degree” (Baron-Cohen 2008, 32, emphasis in original) – where ‘suffering’ is the
diagnosis.
It is worth pausing to consider exactly what this means. The idea that those with
autism ‘suffer’ from the condition is not new; the word is often used as an active verb
process, that it is one of the ways by which autism is properly known. Such a
noting that there is no mentioning of suffering in either the DSM-IV or the ICD
definitions. At the same time, we might think that it is explicable that the
problem/deficit model at work in both manuals can lead to the kind of slippage that
assumes that ‘absence’ must somehow equal ‘suffering,’ given that the language itself
appears to invite the connection. If there are so many repetitions of ‘difficulties’ then
the idea that suffering must follow seems logical. This explains how Baron-Cohen, a
figure who is not unsympathetic to the idea of autism as cognitive difference, can
21
employ language that arrives at this position. It may well be that the meaning
intended in his comments is one about process; that it is unusual to give a diagnosis
unless the individual presenting to the clinician is identified with a problem, and that
those with clear markers of autism who appear untroubled will not be diagnosed
because there is no need to do so. But, even if this is the case, the obviousness of the
To make these points is not to deny that, at times, the experience of autism does
include suffering; this much is clear to anyone with any understanding of the
condition. Those who are autistic often experience problems, physical and social, in
responding to the world around them, and the families of those with autism frequently
experience worry and distress. But two reflections immediately spring to mind with
respect to this: firstly, to observe this about autism is not necessarily to make any kind
of distinctive claim; after all, other experiences - from poverty to bereavement (and
all manner of other life events) - can also clearly cause ‘suffering,’ and we see no
reason to produce individualized diagnostic criteria for these; and secondly, the fact
evaluative process of autism produces a working version of the condition that has an
baseline.
And Baron-Cohen is not alone in making such a claim. In her ‘very short
neuroscientist Uta Frith, one of the acknowledged experts on the psychology of the
condition, invokes a similar idea in her dismissal of those who might choose to see
22
Some campaigners … say that for the whole of the autism spectrum it
“You may disagree,” Frith continues, “but then this book is not for you” (Frith 2008,
38), an intriguing comment in a book (like this one you are reading) designed for a
wide readership. It may be that Frith is thinking of the experiences of parents here,
given that autism is mainly diagnosed in childhood, but even if this is the case the
reiteration of the centrality of suffering, and the notion that to oppose it is ‘perverse,’
are striking examples of the full force of the characterization of autism as a clear
‘problem.’
With all of this in mind, it is clear that we need to revise some of the ‘facts’
surrounding autism and its diagnosis. First, we have to admit that the diagnostic
processes themselves produce an evaluative account of autism, one that makes clear
assumptions about the individual experience of the condition. Equally, we need to see
that these assumptions come to form a narrative of how autism is understood to affect
23
people, a story that moves from presumptions about what the condition is, where it
exists and how it manifests itself, to what that then means for anyone to whom the
label ‘autistic’ is applied. The ‘fact’ of such a storyline often leads to substantial
consequences in the lives of those with autism, in terms of the ways they are seen by
wider public. We also need to look in detail at the specific features of this narrative,
so that we might comprehend the manner in which individual lives are affected. If we
accept that, in part, diagnosis produces the ‘person with autism,’ we still have to
return to the question of what kind of personhood – what humanity, what interiority,
Given that autism is a spectrum condition, and because therefore we might say that
there are many autisms, it is difficult to generalize about the ways in which it is
experienced. Once a diagnosis has been arrived at, much of the subsequent attention
from health care officials focuses on the range of social communication and
interaction evident in individuals with the condition, and especially around the areas
of behavior, intervention and treatment. Here too, however, what might constitute a
fact is a tricky and ambiguous area. In her comprehensive account of autism, taken
from her own clinical and research experience, psychologist Laura Schreibman starts
more evident in the field of autism than in the area of treatment. Here we even have
24
will detail the controversies Schreibman mentions here in Part Three of this book,
but for now we can see from this that the variables we have already noted in our
is then encountered in the world. Autism produces an often dizzying set of responses,
from fascination and concern to sentimentality and fear, and those who seek to
At the same time, it is wrong to think that the person with autism is simply a
figure viewed from the outside, as much of the discussion so far in this section might
imply, and a logic that is arguably still discernable in Schreibman’s distancing phrase
“this population.” One of the most dominant facts about autism to have emerged in
recent years is the way in which those who are autistic have challenged the degree to
which they are only objects in the thoughts of others. As we shall see in Part Two,
more than ever before people with autism are vocal and articulate about their own
histories and about the history of autism that came before them. Equally, there are
more autistic communities than there have ever been, gathering together like-minded
individuals (predominantly through the internet) who support one another, share
experiences, and often advocate against what they perceive as prejudice and
misrepresentation.
and treatment that produce most questions and commentary. As is the case for most
disabilities, the history of care of those with autism – especially institutionalized care
– is one full of misperceptions about the condition and, in its worst excesses, one of
abuse. For much of the twentieth century, a central ‘fact’ about autism was the
presumption that those who were autistic could not be treated and had nothing to
offer society. As a consequence they were kept locked away, often in conditions of
25
serious deprivation, and autism itself was equally hidden from mainstream society. In
truth, it is only in the last two decades (and thus we should speak of a single
generation) that those with autism have been freed from this presumptive
‘knowledge,’ and one result of this is that there are strong opinions about treatment
and care from within autism communities and, frequently, their families. As might be
Following on from the logic that guides diagnosis, many of the ideas that
deficit. Most treatment methods focus on behavior, and in turn the majority of
impairments. The ‘triad of impairments,’ the idea that the core of autistic behavior
discussion of autism that originated in the late 1970s and has dominated much
thinking about the condition since (Wing and Gould 1979). At heart, the triad
concerns questions of processing, the ways in which those with autism seek to make
sense and respond to the world around them. Because, the logic goes, the brains of
autistic individuals process experiences differently, they then struggle with the
generalizing, imagining outcomes etc. The component parts of the triad have
behavior, such as the belief that those with autism are ‘mindblind,’ or don’t possess a
‘theory of mind’ that allows them to understand the perspectives and points of view
of other people (Baron-Cohen 1995). In another influential extension of the triad, one
that in fact seeks to bring its component parts together, it has been suggested that
26
those with autism have “weak central coherence” (Frith 2008, 90-94; Biklen 2005,
40); in other words that they cannot process – or indeed do not see the need to –
differences in a manner that makes them cohere into a general pattern. A third, and
related, idea of such processing, which posits the notion that individuals who are
autistic are unable to plan sequences and actions, to move from one step of any
process to the next, is called ‘executive function.’ Like the theory of mind and
central coherence theories, executive function has suggested forms that treatment of
the condition might take, because in seeking to define the nature of the impairment, it
makes clear possible actions that might compensate for this (Russell 1997).
Before we come to look at those treatments, we might dwell on the fact that,
as Douglas Biklen has observed, the above processes that have developed form the
‘triad of impairments’ hypothesis are all metaphors. The notion that ill health
frequently functions in terms of metaphor has been most famously explored by Susan
Sontag in her discussion of cancer, tuberculosis and AIDS (Sontag, 1991). For
Sontag, illness is commonly a “metaphor for mortality, for human frailty and
vulnerability”, and health conditions described in metaphorical terms are “so overlaid
with mystification” and “so much a vehicle for the large insufficiencies of [modern]
culture” that they arguably function more in cultural terms than medical (Sontag, 94
and 87). At present, autism operates precisely in the manner Sontag lays out; what
was true of tuberculosis as the nineteenth century turned into the twentieth, that it
was bound up in social narrative concerns of the era, is now true of autism as the
twentieth has turned into the twenty first. Biklen has noted that metaphor is
ubiquitous when thinking about autism, that it often “operates as reality” (Biklen
2005, 37), and that the various processing metaphors outlined above actually all
27
“autism-inside-the person” (Biklen 2005, 37). This notion connects back to some of
the medical research issues discussed earlier, and the idea of where autism is. The
belief that individuals host or contain their autism, whether in a process that is
needs to be more understood as a cultural narrative rather than one that is medical or
psychological. It appears to make sense, especially given the lack of any biological
marker that might define the condition, and as a result it offers what seems to be a
natural and intelligible explanation about autism’s origins. At the same time, it leads
to the proliferation of other metaphors about how autism should be treated, namely
the person ‘imprisoned,’ or ‘locked-in’ by the condition. The suggestion that autism
is a ‘veil’ or ‘mask’ that somehow hides a non-autistic person is one that, for all its
lack of medical support, has had a considerable effect on the way many see the
condition.
We are now, obviously, a long way from a certain kind of fact. There is little
evidence here of the peer reviewed and verifiable scientific or medical study, put
together over time and with appropriate controls. Rather, all issues surrounding the
don’t know, even if we can see that they may have their origins in theories produced
are evidence of how the lack of definitive knowledge of the condition invites
suggestion and conjecture, and it is the realization that these are the most common
frames for considering intervention when it comes to autism that should stand as the
central fact about treatment. There is a lot of educated guesswork around, and much
that is not that educated at all. To pick up on the title of Paul Collins’ 2004 book on
28
autism, inspired by his son’s condition, a significant amount of thinking about autism
Behavior therapy and modification for those with autism began in the 1960s
could overcome the perceived limitations displayed by those with autism. At heart,
these processes were simple – behavior considered productive was rewarded, while
that which was not deemed positive was ignored and went unrewarded. Such work,
especially that undertaken in Los Angeles by Ivar Lovass and James Simmons,
challenged the assumption that autism was psychogenic in origin and should be
treated from within a psychodynamic model. It also produced what were seen to be
severe autism, institutionalized and in many cases subject to physical restraint for
most of their lives, was observed to improve; some who had been non-verbal even
learned the beginnings of speech. But the controversies caused by the techniques
employed by Lovaas and Simmons were equally intense. They were explicit about
their use of ‘pain and punishment as treatment techniques’ (as the title of their co-
authored 1969 article on their research put it). The children in the research programs
often being shouted and screamed at when they failed to complete desired tasks.
They were also restrained, shaken, slapped and, in some cases, subjected to electric
and Simmons 1969, 23) and employed in efforts to modify their behavior.
Lovaas and Simmons’ methods have cast a long shadow over the history of
autism treatments. That they abused the children in their care is beyond question;
condemnation of their techniques was voiced as they published their research in the
29
late 1960s and grew in the decades that followed, especially from those within
autism and other disability communities. The brutality of the methods, it was
claimed, was justified by the fact that the shock induced in the children prompted
them into an engagement with the research teams in ways that were otherwise
impossible. Opponents argued that any form of violent treatment was more likely to
response to this Lovaas and Simmons countered that psychodynamic treatments prior
to their own work (which focused on issues of ego differentiation and parent/child
relationships for example) often saw increases in such behaviors as self harming and
violent outbursts when these were supposedly the very issues that such treatment was
trying to reduce. Seen in hindsight, and in terms of balance, it is clear that Lovaas
was wrong, and that his 1960s method was not as successful as he claimed; and even
through the use of behavioural therapy in his later research he also moved away from
the recommendation of such ‘aversion techniques’ (Lovaas 1987). At the same time,
various behavioral approaches that would develop to make real difference in the lives
of people with autism had their source in this idea of treatment. As ever with autism,
By the 1970s, it was clear that some form of behavioral therapy was likely to
be the form of intervention that would prove most effective in working with autistic
have developed into the one autism treatment model - Applied Behavior Analysis, or
effective for children with autism” (Schreibman 2005, 133). ABA, which is
30
‘reward’ idea, has become one of the most used methods of intervention with autistic
school systems, though some schools do implement a version of it. It is also the case
that the required intensity (often 40 hours a week of close work is deemed necessary)
can make it prohibitively expensive for many families, since it requires either the
employment.
ABA can be seen to be the positive that has emerged from the problematic
with autism benefit from the kind of early intervention that ABA provides, with its
creation of a platform on which further learning can build, and the success of its
structures and methods mark it out as being clearly distinct from a number of other
methods of behavioural intervention. At the same time, this does not remove the
question surrounding whether autism itself is a condition that requires ‘treatment’ per
se. Various ongoing ideas about the integrity of autistic lives and the ways in which
aspects of the condition’s can be reconstituted in a positive light challenge the logic
that ‘deficit requires correction.’ As with previous points made in this section about
find ourselves back with the uncomfortable truth that the most informative fact about
the whole area may be the need to admit to what we don’t know. The often dizzying
array of such treatments – from drug regimes that purport to balance chemical and
31
mineral levels in the body, to spiritualist conceptions of autism that connect it to pre-
modern ideas of self and lost narratives of knowledge – are bewildering. We shall
return to think through a number of these in Part Three of this book, especially with
is worthwhile stressing here that they can only exist in the absence of any consensus
intervention, all in the name of ‘treatment.’ When events such as these take place –
when it is thought that there can be a logic for attempting such ‘corrections’ – we
should recognise that we are far from an appropriate understanding of how we should
One of the most repeated facts about autism revolves around gender, namely that
approximately 4:1 in favour of male over female cases. The clarity of such a statistic
has led to the conclusion that there might be something inherently male about autism,
and that part of understanding what it is and how it works can come from thinking
through questions of masculinity. In many ways the source for this line of thought is
the earliest clinical work on the condition that took place in the 1940s. I will detail
this history more thoroughly in Part Two, but it is worth noting here that in his 1944
children in his clinic, Hans Asperger declared that: “The autistic personality is an
extreme variant of male intelligence... In the autistic individual, the male pattern is
exaggerated to the extreme” (Asperger 1991, 84-5). This logic has informed much
32
work on autism in the decades that have followed; in his 2003 study The Essential
Difference: Men, Women and the Extreme Male Brian, Simon Baron-Cohen notes
that “the male brain is predominantly hard-wired for understanding and building
systems”, and cites this in contrast to the female brain, which he characterizes as
The details of the ‘extreme maleness’ theory are easy to recognize. The
variety of ‘special abilities’ that some individuals with autism possess, skills
associated with memorization or calculation for example, are exactly the kind of
knowledge we have and share about autism reinforces this view, in our assumptions
that those with autism are good at math, or obsessed with statistics or objects. These
that boys and men undertake because they ‘naturally’ find them interesting. To pick
one possible case study of how such logic can be pursued: where is the boundary
between a ‘normal’ collection of baseball cards and an obsessive one that might, to
terms of talking about a ‘healthy’ level of interest, leaving its alternative and
opposite – the ‘unhealthy’ – unspoken. Equally, where does the geek or nerd
adolescent, obsessed with technology, stand in relation to such questions, or the adult
‘trainspotter,’ a British byword for restricted interests that are held to be innately
male?
clear that the kind of research discussed earlier, which looks at the structure of the
33
autism in the light of other neurobehavioral conditions that have gender differentials
in their genetic patterning, offer suggestive possibilities about links between the
condition and masculinity. Even given some of the reservations about diagnostic
processes that were discussed previously, the stark disparity in the gender breakdown
of those diagnosed and the linkage to questions of connectivity in male and female
brains mean that conceiving autism within the frame of gender difference is a
At the same time, the idea of the condition being an ‘extreme’ kind of
masculinity does potentially push thinking about autism into (ironically) some
restricted areas. Many of the most well known figures with autism are male – Kim
Peek, the main model for Dustin Hoffman’s character in Barry Levinson’s 1988 film
Rain Man, is probably the most obvious – but the most heralded writers with the
condition are all female. Temple Grandin, Donna Williams and Dawn Hughes are
individuals whose work has made it possible for a majority audience to approach and
understand the interiority of autistic lives, and while it can be argued that Grandin’s
theories, the same is not true of Williams, whose autobiographies reveal a much
diagnostic manuals such as the DSM and ICD, it receives limited focus.
34
Equally, there are numerous instances of autism in males that do not
or systems that we can understand as not being about repetition or restriction. The
world of visual arts is revealing here: the artist Larry Bissonnette was diagnosed with
schizophrenia before his autism was recognized, and learned to draw when he was a
non-verbal child. His paintings, which he often makes with his hands, are frequently
long rectangles on which urban or suburban housing scenes are juxtaposed with
some element of his own presence, either his name or in some cases a Polaroid
photograph of himself:
Bissonnette’s paintings do not conform to the more established forms of autistic art,
places traces of himself into the world of the paintings. The results are not structured
around systems of memory, as with Wiltshire, but are rather different patterns of
creativity in which Bissonnette figures himself, the creator but also the person with
And where systematised patterns do occur in art they do not have to be seen
in terms of limits. Although never diagnosed, Andy Warhol easily fitted many of the
35
criteria that are now used to determine Asperger Syndrome, especially in terms of
obsessive and patterned behavior. In his art, of course, such patterning was explored
Warhol’s paintings are ‘repetitious’ to any degree, and if we allow ourselves to see
him within a frame of masculine autistic creativity, then it is clear that the repetition
is by no means a deficit. As part of Pop Art’s renegotiation of the idea of the artwork
Autism and gender remains a contested field, and as such is in fact part of
wider arguments about the relationship between science and gender. For all the
relevance of the points made above concerning autism and masculinity, the notion
that males function as systematizers and women as empathizers is far from being
accepted by those within the scientific research community. It is clear that research
into the interplay between autism and gender, especially in the context of genetics, is
still imperative and may well provide vital information concerning the nature of the
condition. It is also clear, though, that there are problematic stereotypes that can
maleness.’ There is, however, another consideration that comes from the question of
whether men or women are somehow ‘more’ or ‘less’ autistic than one another,
namely the notion that, transcending gender, autism is in some way a form of proof
recognized as coming in many forms, and the possibility that this allows for the
suggestion that we are ‘all a little bit autistic’ is readily apparent. The various
meanings of such a statement are more complicated than they might appear though;
they indicate both a positive outcome because of the opportunity to normalize autism
36
through an association with general human variation, but also a potential stretching
of the category ‘autistic’ to a point where it may be useless. Indeed, this last point,
although it might originate from a position that seeks to be sympathetic, may well
create problems for who those who do have autism precisely because it removes
autism and an idea of ‘the human’? We will look at this more fully in Part Three, but
certainly to discuss autism in any way is to necessarily engage with core questions of
what constitutes humanity. As Paul Collins observes, there is a potential irony in this
given that many people, including many who have autism, think of the condition in
humans. But there’s an irony to this, for precisely the opposite is true. They
our species unique. Other animals are social, but only humans are capable of
abstract logic. The autistic outhumans the humans, and we can scarcely
If, for Collins, autism represents an abundance of humanity, for other writers
precisely because the difference that comes with disability works as a reminder that
37
there is not any shared, singular condition of ‘the human.’ In truth, and despite the
Collins’ idea of ‘outhuman[ing] the humans’ is, as the phrasing makes apparent, a
version of the post-human argument, and the kind of critique that it contains fits with
the wider post-human position on disability. Certainly autism works in this way, as a
vantage point from within which the range of humanity can be viewed. To say this,
however, is not to say that there is an easy way we can all identify some form of
autism within ourselves; possibly Collins’ statement that we can ‘scarcely recognize’
the consequences of thinking about autism and the human is one to highlight in this
regard – it is another version of our admitting to what we don’t know. That autistic
difference highlights human difference is a fact however, and one that is best
understood in positive terms. Those with autism are not somehow inevitably ‘other,’
or fundamentally separated from those without the condition, and there is much to
know and learn by thinking about the connections between the various versions of
Autism is not an illness. Though it can sometimes be associated with serious health
and nutrition, it is not in and of itself a condition that produces ill health. This is a
fact that is worth underscoring, and one sometimes lost in the labelling of the
both medical and public arenas. The popular lexicon easily embraces the notion that
it is possible for any individual to have something ‘wrong’ with them, and the baggy
38
nature of this word allows for the easy crossover between illness and a
resist such simplifications given that they misrepresent and obscure far more than
they reveal. Those with autism may well visit their doctor far less frequently than
those without. They may not ‘suffer’ at all. Their health may be fine.
This journey through the ‘facts’ of autism has possibly served to muddy the
waters, and arguably has made things less clear than might have been anticipated at
the outset of our investigation. This is something neither expected nor desired when
the facts of any given medical condition are laid out, a situation in which clarity is
that there is little about autism on which there is universal acceptance. And yet there
is a real value in pointing this out as a fact in itself. It helps in our understanding of
what autism is if we know that the lack of scientific or medical consensus suggests
that it is more than a single entity, or has multiple triggers and manifestations.
Equally, it helps to see that the thinking that frequently passes for knowledge or fact
is often narrativized and characterizes both the condition and those who have it in
certain distinct ways. This is knowledge in its own right. To understand more about
autism, to bring more viewpoints to bear on how we have come to see it in the ways
in which we have, we need to move beyond the facts to deal with the multiple stories
it produces and through which it is in turn produced. Central to this is the history of
39
Part Two: Social, Cultural and
Political Histories
40
Autism before modern medicine
In a very real sense, the history of autism is a recent one. The word ‘autism’ comes
from the Greek autos, meaning self, and was first used by Eugen Bleuler in 1908,
psychiatrist who also coined the term ‘schizophrenia,’ and his understanding of
autism was not as we would recognize it today but rather as a kind of non-logical
thought that formed part of his wider research around the emerging ideas of dementia
and the schizophrenic mind. Autism as we currently understand it dates from the late
1930s and early 1940s and the work of psychiatrists Leo Kanner and Hans Asperger
who, independently of one another and on different continents, used the word to
describe some of the children they studied in their own clinical research.
Adam Feinstein begins his 2010 study A History of Autism, the first book of
its kind, by discussing the work of Kanner and Asperger, and the two men are rightly
seen as being foundational in the study of what we consider the condition to be. But
neurobiological and part of the general pattern of human variation, we also need to
concede that this will have always been the case. As a result, individuals with autism
have been always been part of the fabric of humanity, and have been members of all
societies and cultures before the twentieth century. Is it then possible to talk to
autism before it has a medical formulation? What would it look like and how might
we recognize it? The terminology that has made the condition visible is very
contemporary, so how would the linguistic and narrative conventions that pre-date
These are questions that necessarily invite guesswork. Writers on autism have
identified case studies from the past in which individuals have been described in
41
terms that seem, to our eyes and with our knowledge, to suggest that they had the
condition. Probably the two best known examples of this are Victor, the so called
‘Wild Boy of Aveyron,’ a non-verbal feral child found in forests in central France in
1797, and Kaspar Hauser, a teenager who suddenly appeared on the streets of
Nuremberg in Germany in 1828 with documentation that suggested he had spent all
his life up to that point enclosed in a basement dungeon. Both cases were widely
discussed in their time, not least because of the ways in which they fed easily into
In her 1989 study Autism: Explaining the Enigma, Uta Frith concludes that, while it
is quite possible that Victor did indeed have autism, a claim she makes based on a
reading of impairments in his social and imaginative abilities, Kaspar Hauser, who
was far more linguistically able, probably did not (Frith 1998, 16-33). At heart,
opinions such as those professed by Frith are based on an extension of the theory of
the triad of impairments back into whatever records still exists about the children in
question.
metaphors of distancing and lack of connection in European fairy tales, and the
reports of Russian ‘Blessed Fools,’ individuals who, from the sixteenth to the
nineteenth centuries, were known for their social eccentricity and obsessive
behaviors and often lived on the outskirts of settlements where locals read their
isolation in terms of religious devotion (Frith 1998, 36-40). Certainly the most
this way through the logic of the cultural and linguistic systems of the time, and the
42
and stereotypical or repetitive behaviors, allows for the possibility of a glimpse into
obvious attraction because of its appeal as a form of mystery, and one noteworthy
trend in recent writing on the condition has been a process of ‘outing’ historical
figures. In a manner that is possibly explicable given the idea that autism is a
systematizing condition, figures in the fields of science, math, and philosophy, from
Isaac Newton and Albert Einstein to Ludwig Wittgenstein and Alan Turing, have had
both their work and lives re-read in terms of their supposed autism, often being
elevated to the status of ‘autism heroes.’ In the arts, the tendency has been even more
widespread, and there has been published speculation on a whole range of writers in
particular. Henry Thoreau, Herman Melville, Emily Dickinson, Lewis Carroll, Hans
Christian Anderson, Sherwood Anderson, W.H. Auden, and George Orwell have all
been suggested as being on the spectrum, and at least three books have been written
on the topic of autism and artistic creativity. In terms of fictional characters who
might be autistic or have Asperger Syndrome, claims have been made for figures in
the work of William Wordsworth, Melville, Charles Dickens, Joseph Conrad, Arthur
Conan Doyle, and William Faulkner (Fitzgerald 2004; Fitzgerald 2005; Brown
2010).
The issues involved in talking about autism before the middle of the twentieth
century are clearly complex. The lack of consensus surrounding the origins and
forms of the condition, as established in Part One, are obviously multiplied many
times over when it comes to the consideration of time periods that lack any kind of
autistic: slight behavioral traits discovered in letters or written accounts can be seized
43
upon as proof; anecdotal information remembered by acquaintances is
impairment associated with the condition means that even the absence of facts (in
terms of, say, an individual not especially good at ‘social interaction’) can be
here, and seems not to have any clear-cut boundaries. In fact, such speculation is
probably best seen not as a desire to engage with autism in the historical record, but
which we look for the condition everywhere. And to search endlessly for autism in
the past is, in some ways, still a point about searching for definitions of it in the
At the same time the central fact remains: there have been people with autism
before the twentieth-century medical codifications of the condition came into effect,
and we are not wrong to want to find traces of such presence where we can because,
in doing so, we might potentially fill in some of the gaps in our understanding. In
effect, this problem becomes an extended version of that discussed in Part One of
this book, namely how to navigate between the tensions of what knowledge about
autism is perceived to be, but one in which even less of the terrain is secure. In part,
the simple assertion that autism did not only come into existence in the twentieth
century (although, as we shall see, the ways in which this process took place has
limited comprehension. But it is clearly the case that any kind of claim concerning
the long history of autism needs to be made with real expertise, and not left to
44
One area where we are on slightly more stable ground is the interaction
between autism and the nineteenth-century outlining of the ‘idiot’ figure. Here, it is
probably wrong to talk of an ‘autism before modern medicine;’ rather we should see
this period as a transitional zone in which developing medical ideas of the mind and
behavior began to take the forms that would allow for the kinds of specialization in
psychiatry that saw the later specific identification of the condition. The links
between the two words are undeniable – even 10 to 15 years ago the term ‘idiot
savant’ was not an uncommon term used to describe some people with autism – but
‘idiocy’ does not have, and never did have, any clear diagnostic outline. Rather, in
the words of Martin Halliwell, who has written a cultural history of the topic, it
(Halliwell 2004, 5). An increasingly common term from the mid nineteenth century
monitoring of the period, a time when economic and social determinants drove new
Séguin’s 1866 Idiocy and Its Treatment by the Physiological Method, which began to
differentiate it from the larger category of madness. In the ways in which idiocy
heralded ideas that would become part of later definitions of autism. Halliwell cites
an 1897 account of ‘the idiot’ by Frederic Bateman, a Fellow of the Royal College of
An idiot is a human being who possesses the tripartite nature of man – body,
45
brain, resulting in an inability, more or less complete, for the exercise of the
Though this is very much the prose of its time, we can see how it could lead, as the
Bateman’s highlighting of the working of the brain would, gradually, overtake the
emphasis on ‘moral faculties’ as time progressed. The ‘tripartite nature’ of body, soul
and spirit, a favourite idea in the nineteenth century, would be transformed into the
more recognisably medical notion of the ‘cognitive’ as idiocy was replaced by other
technical terms. Here, we can surmise that the idiot may well be the person with
autism, and that in terms of diagnosis and medical research aspects of ‘idiocy’ are
The idiot and the individual with autism can be seen, if we work through the
prose of the later nineteenth century in identifying the former and seek to anticipate
the emerging shapes of the latter, to have potential overlaps. Ideas of isolation, of
found in accounts, both scientific and fictional, that describe people with each label.
In Joseph Conrad’s story ‘The Idiots’ for example, written in 1896 and published in
the 1898 collection Tales of Unrest, a French peasant couple have four children, the
‘idiots’ of the title, each of which has a severe intellectual impairment. The
description of the third child, shortly after birth, displays the kind of language that
46
would come to be used in case studies of young children with autism some 60 years
later:
That child, like the other two, never smiled, never stretched its hand to her
[mother], never spoke, never had a glance of recognition for her its big black
eyes which could stare fixedly at any glitter, but failed hopelessly to follow
the brilliance of a sun-ray slipping slowly along the floor (Conrad 1898, 92).
Here, the avoidance of contact with a parent (especially eye contact) and the
potential obsession inherent in the ‘stare’ at the ‘glitter’ do indeed sound like some
forms of what is still called early infantile autism. For Conrad to be able to produce
such representations there must have been a common cultural currency in which
We can say with some confidence that a number of people classed as idiots in
the nineteenth century would have had autism. There is enough of an evidential and
representational link for us to be able to justify such a statement. The link between
the two terms remains imprecise, and the slippage that necessarily exists because of
different formations and nomenclatures produces a space that is not easy to bridge
(and, of course, this is even more the case when we look further back through
history). But individuals with autism were part of the fabric of earlier societies, even
if we can only dimly imagine or chart their lives. Such imagination becomes easier as
the nineteenth turns into the twentieth century and the outlining of intellectual
disabilities becomes more technical and nuanced. To understand the ways in which
autism emerges from this process, we need to explore its link to the developing
47
The development of child psychiatry: Kanner and Asperger
One productive way to think of the rise of psychiatry during the nineteenth century is
models of the body and mind gathered empirical characteristics, the biological notion
as the ‘degenerate’ and ‘deviant’ (and indeed that of the ‘idiot’), which extended and
complicated earlier ideas of ‘madness.’ As these terms suggest, much of the point of
such vocabularies was to articulate processes of social control, and the links between
‘mental deficiency’ and criminality were ever present. A notable by-product of such a
desire for control was the development of the asylum as a space of separation, a site
where those with cognitive difference were sequestered in the name of a greater social
good. But the asylum also became a space of study, as ‘confinement’ allowed for
detailed examination of those inside. More than ever before, doctors now had the
asylum was many things, but one of these was a laboratory for psychiatric research.
psychopathology and personality disorder were all terms refined as the century ended,
with Sigmund Freud’s work being pivotal in the new formations. And, accompanying
this, a gradual process of age differentiation saw increasing research upon ‘insanity’
in children. For the most part, children were not admitted into asylums, but those that
were (often those with the most visible disabilities) became, like their adult
psychosis in a medical textbook published in 1879, and the category of the ‘idiot
48
child’ became established as one in its own right during the period. In the early
concerns produced a new focus on children with disabilities, and new kinds of
accompanying shift from the asylum to the medical clinic, a movement that occurred
never before.
Such developments explain the career of a figure such as Leo Kanner, who
twentieth century. Kanner was exactly this kind of child psychiatry specialist: his
Child Psychiatry, published in 1935, was the first English language textbook on the
subject and the clinic in which he worked at Johns Hopkins Hospital in Baltimore,
itself the first child psychiatric clinic at any teaching hospital in the world, brought to
bear all the latest research on the issues of children, disability and mental health.
Many of the initial ‘facts’ outlining autism come from the pioneering study of 11
For Kanner, ‘affective contact’ meant meaningful interaction with others, and
the absence of this was one of the key characteristics he indentified in the children he
observed. In addition, he stressed that the children displayed a marked and “anxious”
desire for the “preservation of sameness,” as he put it, especially in terms of wanting
to maintain regular routines and their responses to their surroundings. They also had
very little language, and that which they did possess appeared not to be directed
towards personal communication. Kanner also noted that the children exhibited a
49
fascination with objects, which they would use in obsessive ways that differed from
other children of the same ages. Interestingly, in a move that subsequent researchers
would come to challenge, Kanner asserted that the children he worked with were not
their performance in certain tests connected to memory and spatial organization was
combine them all, Kanner concluded that the condition he was describing was
condition as he termed it in his paper, which had not been identified before (Kanner
1943, 245). His outline of autism would come over the next few decades to be seen as
being foundational in subsequent research, and the term ‘Kanner’s autism,’ or ‘classic
autism,’ was coined to describe those young children who seemed most ‘obviously’
autistic in the ways that they conformed to the central aspects of his findings. In many
ways then, Kanner’s establishing of the criteria for diagnosis created the template for
the identification of the child with autism, the figure we might pluck from our
child. Remembering our exploration of the workings of diagnosis in Part One of this
book however, we can see that it is a particular type of narrative construction that
allowed such a process to take place. Part of this narrative is the general development
of medical research that produced Kanner as the kind of expert he was, but part of it is
also the logic he brought to bear in asserting his actual findings. ‘Aloneness,’ for
50
example, is a term that may seem natural to describe the various actions Kanner
witnessed in the children in the study, but it is also an evaluative word that invites
conclusions about the emotional states of those individuals labelled in such a manner.
Sue Rubin, a woman with autism, wrote a 2005 ‘conversation’ with Kanner in which
she critiqued precisely this aspect of his formulation in an interaction with his 1943
article. Although Rubin writes “being alone is sometimes my only sanctuary,” she
also observes that “an autistic person’s degree of detachment varies.” “What Kanner
thought unusual,” Rubin concludes in a comment that unveils the logic of the
diagnostic method, “I find quite reasonable” (Biklen 2005, 90, 100 and 88).
method. Though it might seem inevitable that this would be the case, Kanner’s
constituted, and as Rubin notes, behavior outside of the clinic and in social settings is
both relative but also always subject to judgement. This may seem to be a fussy point:
given that there are no biological markers for autism, how else might the condition be
identified if not through behavior? But we have seen in Part One the consequences of
diagnosis performed in this manner, and the ways in which judgements on behavior
can become so easily surrounded with language that stresses the negative. The actual
conclusions to be drawn here are less about autism itself, and more about the authority
of the medical researcher and the commentary provided on research subjects. As with
many other disabilities, the clinical observation of autism was brought into being by
the process of looking for it, one of voyeuristic authority, and then generalizing from
Kanner’s testing and surveillance methodology also created two other aspects
of autism that have come to dominate contemporary thought about the condition:
51
firstly, and inevitably, it meant that autism came to be associated predominantly with
children, and thus with a specific idea of child development; and secondly, the fact
that the children in his clinic were objects of enquiry in the way that they were, that
they were observed with a supposedly dispassionate and detached clinical gaze,
stressed the ability of the expert to read the condition in the process of assessment.
This returns us especially to the idea, mentioned in Part One, of autism being hosted
by anyone who has it. As we saw there, Douglas Biklen has identified this as the
“autism-inside-the person” model (Biklen 2005, 34), in which traits and behaviors are
understood to be contained within the individual concerned, and the job of the
metaphor, it is clear that this type of formulation has, in part, led to some of the many
ideas popular in cultural narratives, especially that which asserts that autism somehow
inhabits a body that is not autistic, and that the two might be prised apart in some
way, with the non-autistic, ‘real,’ self saved from the disability. The many common
discussions of the condition stem from this kind of formation. And, in the wake of
Susan Sontag’s work on illness and metaphor discussed in Part One, we can further
understand that the idea of autism being ‘inside’ the body also characterizes the
a cancer or a demon spirit that requires removal. It is, of course, not fair to blame
Kanner for the fact that such ideas about autism exist, but if part of our understanding
of the condition involves plotting the trajectories that have led us to our contemporary
conceptions, then we need to be clear sighted about how such narratives have been
formed.
52
With Kanner autism came into a certain kind of focus. Intriguingly, at the
same time but thousands of miles away Hans Asperger was producing research that
would come to shape the condition that now bears his name, a condition that overlaps
but does not quite neatly fit on to autism as Kanner saw it. In his clinic in Vienna,
Asperger observed 4 boys, aged between 6 and 11, and also came to use the word
‘autistic’ to describe their behavior. There is debate about how the two figures worked
established that Asperger first lectured and published (in German) on the idea of
believed that his first publication on the topic came in 1944, and so after that of
Kanner. As a German speaker of Austrian extraction himself, Kanner would have had
more reason than most medical researchers to know of Asperger’s work, which had
been ongoing throughout the 1930s, but there is no mention of it in his 1943 paper,
exactly who knew what first - after all most ‘originators’ in research or technology
turn out to have based their work on some similar version that pre-dates the moment
of ‘discovery’ – but there is something highly suggestive in the notion that autism
children he observed, and also noted issues of obsession and compulsion, and of the
work in a University clinic in Vienna in the 1940s, his analytical method mirrored that
of Kanner. Asperger’s children, however, displayed far greater linguistic range than
53
those in Kanner’s Baltimore study, and he claimed that his condition could not be
recognized in infancy, unlike Kanner who noted that autism was usually discernable
Kanner’s and Asperger’s work dominated thinking about autism in the fields
of psychiatry and social psychology in the decades following the 1940s. Though some
have argued that autism and Asperger Syndrome are distinct and separate, and indeed
Asperger himself saw the condition he studied as a ‘personality disorder’ without the
organic dimension identified in autism from early on in the research, most experts see
the overlaps, rather than the differences, between the two conditions. Because much
of Asperger’s work was not translated into English until the 1980s, it was Kanner’s
findings in particular that guided thinking about autism, with his diagnostic criteria
Undoubtedly, these were vital developments. However, for all the importance
of such medical legacies, any account of the development of autism from the 1940s
onwards needs to move beyond the idea that it was only the ‘hero-doctor’ involved in
detailing the condition. The children analyzed by Kanner and Asperger, and the others
who came in subsequent studies, might appear to be lost in the prose of the research
article, or confined to notes in university archives, but of course they were at the
beginning of their own complex lives and, as the first figures diagnosed with the
of autism. Kanner’s first subject in his 1943 article, his ‘Case 1’, is referred to as
presented with mannerisms that local doctors, who sought to understand him in terms
54
of illness, were unable to comprehend, and when his parents took him back home in
1938 they were no closer to any kind of useful diagnosis. Donald’s parents, who came
Baltimore, and between 1938 and 1942 took him to the Johns Hopkins clinic on four
separate occasions. As Kanner worked up the 11 case studies that would form the
basis of his research, Donald was central to his emerging understanding of autism. In
Kanner’s prose Donald emerges as the sum of his behaviors; he is described in this
way:
crossing them about in the air. He shook his head from side to side, whispering
or humming the same three-note tune. He spun with great pleasure anything he
could seize upon to spin. He kept throwing things on the floor, seeming to
delight in the sounds they made. He arranged beads, sticks or blocks in different
constant instruction (from his mother) in any form of activity other than the
Assessed in such terms, Donald’s future beyond the Johns Hopkins clinic looked
difficult if not downright bleak: a severely disabled child with a condition understood
by no one beyond a few specialists. Kanner’s article projects him into an uncertain
life; of follow-up testing in which he will feature as a research subject, but with no
55
In 2010, journalists from The Atlantic magazine, looking into the history of
autism, found Donald, still living in Forest (Donald and Zucker, 2010). Aged 77, he
lives alone, although has close contact with his brother, who lives locally. Donald
attended college in Jackson, majored in French and sang in the college choir. He
drives to his local golf club where he plays every day, and has become a keen, if not
obsessive, traveller, having visited 28 states and 36 foreign countries since he began
venturing abroad in his 30s. Part of the communal fabric in Forest, where he has been
accepted ever since he was a child, Donald’s life has been one that might not have
seemed possible from the impressions given of him in Kanner’s article. But that life is
child with autism. For all of his status as the foundational research subject of the
condition, such a ‘fact’ pales into insignificance when set against the detail and value
of the life that Donald, and others like him, would go on to lead. While not all of
Kanner or Asperger’s children will have had lives such as Donald’s, and we should be
figures in the mid twentieth-century history of autism. But the psychiatric work of the
first two, and the developing life of the latter, still left a crucial question unanswered:
if the research of the 1940s helped to identify autism, it did little to suggest what
caused the condition. A more systematic initial search for causes would come in the
56
Reading Leo Kanner’s 1943 article now, it is impossible not to notice that one
element of the children in his study appears to fascinate Kanner almost as much as the
research subjects he was observing. This is the family stories, and especially the
details of the parents, of the children in his clinic. These stories form a distinct
parallel narrative to that of the main research being undertaken. Kanner seems unable
not to comment on the parents of the children he worked on, noticing that they were
all “highly intelligent” for example, and that “there is a great deal of obsessiveness in
the family background.” He then went on to write 6 sentences that were to have a
significant impact on the way autism was seen for the next thirty years:
One other fact stands out predominantly. In the whole group, there are few
really warmhearted fathers and mothers. For the most part, the parents,
people. Even some of the happiest marriages are rather cold and formal affairs.
Three of the marriages were dismal failures. The question arises whether or to
what extent this fact has contributed to the condition of the children (Kanner
1943, 250).
In both the first and last sentence here, this rather casual and subjective observation
on Kanner’s part is elevated to the status of ‘fact,’ and the suggestion posed by the
insertion of this fact into the ‘question’ with which he ends is clear: that in some way
parents are responsible for autism in their children. Kanner continued to hold this
position beyond the 1940s, once suggesting in a 1960 interview in Time magazine that
all children with autism came from “parents cold and rational who just happened to
57
defrost long enough to produce a child” (Feinstein 2010, 33). Indeed, it was Kanner
who coined the phrase ‘refrigerator mother,’ the most notorious comment attached to
the idea of parental causation of autism. Though he would claim later in the 1960s
that he had always believed that parents were not blame for autism in children, and
that all of his research pointed to the fact that the condition occurred biologically, his
statements nevertheless invited further speculation as to what the link between autism
individual research similar to that we observed above when noting the emergence of
child psychiatry and its importance to the careers of Kanner and Hans Asperger. As
the 1950s turned into the 1960s, and more research on autism came to be published,
the condition fell within the frame provided by the period’s development of
psychoanalysis. Even though medical thinking on autism had suggested that the
condition was organic, the lack of any confirmed biological marker for diagnosis had
invited speculation that it may well be a disorder that resulted from a crisis in the self.
Kanner’s suggestion that the characters of the parents of children with autism might
have a part to play in their children’s condition only made such a possibility more
The leader of this research was Bruno Bettelheim, an authoritarian figure who
Bettelheim, a Viennese Jew, had been interned in both Dachau and Buchenwald
concentration camps in 1938 and 1939, and was only released as a result of a bizarre
gesture by Adolf Hitler, who granted some inmates of the camps amnesty to mark his
fiftieth birthday. There is little doubt that Bettelheim came to view autism through the
58
lens of his camp experiences: he claimed to have seen how the horror he witnessed
had left individuals withdrawn, isolated and docile, and in a deeply disturbing
generalization taken from such observations, he formed the opinion that the
relationship between autistic children and their parents was one that mirrored that
which existed between camp inmates and those who guarded and persecuted them.
More than anyone else, it was Bettelheim who promoted the idea that the child with
autism ‘withdraws’ from the world, a process that takes place as a result of the
prevents them from bonding with their child. Once started, this creates a spiral, with
the parents ever more distant and the children pushed into further withdrawal as a
result. The result, Bettelheim stated, was profound autism, and the only cure was to
Psychoanalysis dominated thinking about personality, and the idea that the self was
the core focus for thinking about autism was, as a consequence, seen to be entirely
logical. The prominence of pioneers in the links between psychoanalysis and children,
such as Melanie Klein and Margaret Mahler, during the period made Bettelheim’s
position and methods understandable. A man who commanded respect and produced a
real sense of awe because of the force of his personality, Bettelheim broke out of the
closed circle of medical research to become a figure widely known across the US. He
was, in the public mind, the specialist on autism, this little known and little
59
understood condition that was thought to be extremely rare. Within the research
community, Bettelheim’s status as a camp survivor gave him an authority that few felt
could be challenged, and although some individuals continue to publish accounts that
stressed organic and biological elements to autism (Bernard Rimland’s 1964 study,
Autism: The Syndrome and Its Implications for a Neural Theory of Behavior was a
prevented ego development in their children because of their own inadequacies, and
his continual use of language that stressed parental ‘coldness’ or ‘rigidity’ produced
despair among those who did have children with autism. It is difficult to imagine how
challenging it must have been to be the parent of an autistic child in, say, 1960, even
though we know there must have been many of them. Living with a child that the
public at large would have completely misunderstood, the full weight of medical
knowledge would have made it very clear where the blame lay. It is no surprise that
many parents in such a position became depressed and, in a cruel irony, often had to
undergo psychoanalysis themselves. Of course, if the lives of parents was hard, those
Bettleheim’s identification of the causes of autism was only half the story
however, because his following claim was that, as a result of pinpointing where the
condition came from, he and his team in Chicago were able to produce therapies that
had success rates unmatched by any other specialist. In his landmark 1967 book The
Empty Fortress, a text where the attitude towards childhood autism is given away by
the very title, Bettelheim championed his psychoanalytic methods while attacking the
ideas of others, and asserted that his treatment methods produced substantial
60
improvement in nearly half of the children in his study. This appeared to be a
remarkable vindication of his approach, given that no other treatment came anywhere
close to such figures. Bettleheim was, it appeared, the undisputed leader in autism
research, the major figure in the field since Kanner, and the only person capable of
relationship to an idea of cure. Because such approaches dismissed the notion that the
condition might originate biologically in the brain and were rather caused by
behavior, they offered the potential for productive change. If, the logic ran, autism
was caused by psychogenic factors, the ‘withdrawal’ that the child experienced could
be rectified. Appropriate therapy could, it appeared, ‘bring back’ the child who had
been ‘lost.’ We shall see in Part Three the ways in which the search for a cure still
occupies a powerful place in our own contemporary discussions of autism, but this
fact makes it possible to understand how desperate parents might submit themselves
and their children to the therapies devised by Bettelheim and his followers. For some,
accepting that they were to blame was a price worth paying if it meant that their child
could be ‘rescued’ from autism. That this kind of thinking constituted the condition as
a ‘problem’ goes without saying. For families, autism was frequently asserted to be a
‘disaster’ or a ‘tragedy,’ and confirmation that this was the case seemed to come from
started to crumble. The anti-psychiatry movement of the late 1960s and 1970s began
to produce evidence that psychoanalytic treatments were often more harmful than
beneficial, and continued work in neurology meant that a clearer understanding of the
brain made it easier to suggest that autism might have neurological components. In
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addition, those who worked with children with autism simply became more and more
convinced that Bettelheim was wrong, and doubt began to be expressed about his
findings. His claims that nearly half of children responded positively to his treatments
was not replicated anywhere else, despite other researchers using similar methods,
and the powerful personality that had once conveyed authority was now seen to be the
from his Orthogenic School came forward to detail the abuse they had suffered while
pupils. Bettelheim had hit those supposedly in his care (beatings appeared to be
common) and other stories suggested that several students at the school never had
autism, but were rather sent by their parents because of something as commonplace as
unruly behavior.
The damage done to those with autism, and to the very idea of how the
condition functions in the world, that was perpetuated by Bettelheim and his thinking,
conclusively wrong. Many lives were ruined, and the ability of medical science to
lead in the further understanding of the condition was damaged in ways from which it
has still not recovered; many parents in particular are still highly suspicious of
the vaccine scares surrounding autism that marked the period around the millennium.
condition, such approaches to autism, and their consequences, still operate in some
parts of the world. Feinstein observes that “France still largely follows the
psychoanalytic tendency” and that “it remains the principal approach in the
francophone region of Switzerland” (Feinstein 2010, 74), while in his book on autism
anthropologist Roy Richard Grinker notes that the situation is similar in Argentina,
62
which along with France has “more psychoanalysts per capita than anywhere else in
the world” (Grinker 2007, 83) as well as Korea, where cultural pressures on women
possessing an inability to care (Grinker 2007, 242). There are still parents who are
being made to deal with the suggestion that they may be to blame, and still individuals
with autism whose lives are hugely misunderstood and who are subject to
Not all parents accepted the view of themselves as brutal suppressors of their
child’s development however, and not all of those with autism were prepared to allow
the 1960s and 1970s, and possibly the only beneficial one, was the rise of the
advocacy movements that began to demand better care policies, better education, and
greater understanding of the condition. Often parent led in their initial stages, such
movements changed the ways in which autism was discussed, and paved the way for
the kinds of disability rights campaigns that would follow in later decades. It was an
If we were able to look back to the early 1960s and view a cross-section of all the
various issues connected to autism during the period, it would make for sober
reflection. The condition was subject to almost wholesale ignorance, among medical
specialists as well as the general public. It was often difficult, if not impossible, to get
a diagnosis and even if such a fortuitous event occurred there were virtually no
services for people with autism and their families. Children would be excluded from
63
school because of perceptions or complaints about their behavior, usually categorized
as ‘disruptive,’ and the prevailing misunderstanding that autism only affected children
meant that adults with the condition were invisible, lost to all the various healthcare,
social and educational systems that had no language or structures to meet their needs.
It appeared that the only people who were in any place to developed clear-
sighted approaches to autism in the early 1960s were the small number of
professionals who resisted the psychoanalytic approach to the condition, and family
members who realized that the conceptions that came from such an approach failed to
adequately describe those they lived with on a day-to-day basis. In the UK, a group of
like-minded parents came together in London to form the Society for Autistic
Children (originally called the Society for Psychotic Children) in 1962, while the first
autism association in the US was formed in upstate New York in 1963. The National
Society for Autistic Children in the US was born out a number of such small-scale
meetings and had its first congress in 1969. Fighting the widespread ignorance of the
period, parents had to negotiate with local and state health and educational authorities,
many of whom simply referred them to other departments and services, assuming that
insight; secondly, social support within the community; and, finally and crucially,
special education provision that recognized the specific needs of those with autism.
For parents who had been told routinely by professionals that their children were
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These processes were vital in the development of thinking about autism in a
number of ways. One of these was the specificity with which the condition now came
to be viewed. At a time when so little was known, it was not easy to assert what was
then thought of as the singularity of autism, and to want to differentiate it from the
wider category of ‘mental handicap.’ In the UK, the decision to form the National
Society for Autistic Children meant creating distance from Mencap, at that point the
largest and most well known charity dealing with cognitive impairments and mental
health. With specialist medical knowledge on autism still in a state of contestation, the
something in its own right was a bold and prescient move. In the UK and US, both
supporting those with autism: the British Society for Autistic Children became the
National Autistic Society (NAS), while the American National Society for Autistic
Children would turn into the Autism Society of America (ASA). The fact that each
association dropped the word ‘children’ from its title displays the increasing
understanding that autism was a lifelong condition and that provision needed to be
autism has followed similar patterns, but frequently these processes have taken place
far more recently. To cite just one example, in India in the 1980s diagnoses of autism
were rare. Most children with the condition were considered ‘mentally retarded,’ or
institutionalized and schooled without any specific support; the intervention practiced
was identical for all those who fell into these wide classifications, and for those
children who did live at home there was no guidance on how a domestic environment
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might be structured to help with learning and development. A small group of parents
came together in Delhi in 1988, sharing their experiences and making contact with
psychiatrists, often those with North American training, who could provide a
diagnosis. Action for Autism (AFA) was founded as a consequence in 1991, and in
1994 it helped establish a school with one just teacher and two students. In 2005,
AFA persuaded the local authorities in Delhi to create a National Centre for Autism,
which has been in operation ever since. Despite this, and even with AFA now being
the largest autism association in South Asia, knowledge of the condition in India is
still very limited, both in the medical profession and the general public, and parents or
find an appropriate diagnosis. Even now, Autism is not included in the Indian Persons
dissemination of knowledge about autism, has not been without controversy. From the
1990s onwards, when advocacy groups began to be set up by those with the condition,
there have been concerns about the idea of autism with which such associations work,
with particular comment that it has been the situations of parents, as opposed to those
who are themselves autistic, which have been prioritized. The logo for the NAS, for
example, was up until 2003 that of a child who appears to be weeping, hardly the
most positive of images (even if the Society itself notes that the image is meant to be
a child flapping his hand); while in the US there is considerable hostility towards
decisions taken by the ASA by many advocates with autism because of a perceived
bias towards parents. It may seem harsh to criticize the associations that have
pioneered the ways in which autism is understood, but for some they contain too
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and loss. The contested relationship between major national organizations such as the
NAS and ASA and other, smaller, advocacy and pressure groups is one of the marked
features of discussions of autism today. From the outside, this in-fighting appears
knowledge of autism is still limited to the point that all interventions and changes in
how the condition is portrayed and presented take place within an unsecure present. It
still may well be many years before the parameters of ‘thinking autism’ are properly
established, and the ongoing revisions of the charities and foundations that exist to
raise awareness of the condition, however controversial they might be, should be seen
The rise of the opinion that autism constitutes a positive difference, and is not a
deficit, has been the most noticeable non-medical development in the history of the
condition in the last decade. It has been led by those who identify as having autism,
and who see it as an integral part of their identity. The wider context for such a
change is the development of disability rights more generally, and the demands that
the voices of those with disabilities be heard, aligned with rise of Disability Studies as
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disability within a frame of social difference. From Deaf communities to associations
for those with physical disabilities, these rights-based movements have changed the
In the case of autism, the declaration of such rights has involved work
undertaken both by individuals and organizations. High profile figures with autism,
such as Jim Sinclair, Donna Williams, Amanda Baggs and Ari Ne’eman, have
commanded media attention through their arguments that autism constitutues a natural
part of neurodiversity. Sinclair and Williams were among the founding members of
and Sinclair’s powerful 1993 manifesto ‘Don’t Mourn for Us’ was an early
articulation of the rejection of the ‘suffering’ and ‘deficit’ model of the condition.
Baggs became an immediate celebrity following her posting, in January 2007, of her
video ‘In My Language’ on YouTube (Baggs 2007). When the video, with its
Baggs became the subject of a number of CNN articles discussing the condition
(Gupta 2007; Gajilan 2007). For his part, Ne’eman – the founder of the Autistic Self-
Advocacy Network (ASAN) - was invited in June 2010 by Barack Obama to become
Much of this change has been made possible by advances in technology; those
with limited language can, for example, be part of forums or movements that have
their main presence on the internet. Following the example of the ANI, a number of
new associations, such as ASAN or the US-based Aspies For Freedom (AFF), formed
in 2004, champion the rights of those with the condition. Other websites, such as
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point to instances of ongoing discrimination against individuals with autism, whether
at the level of legislation or through specific news stories. They counter the
impression that the condition is best characterized by medical progress, rather seeing
consequence the basic rights of individuals still have to be fought for. Such arguments
often draw condemnation from others working on autism, who point out that
provision for those with the condition has never been better. This back and forth of
autism: especially in the US, where much of the medical research receives funding but
also where the rights campaigners are most organized, ‘facts’ are disputed and
opinions stated and challenged. It can be a bewildering environment for many who
enter it.
For all of the contestation however, the question of whether autism constitutes
that ‘classic’ autism, as Kanner would have recognized it, is not the only form the
condition takes, the knowledge that autism is a spectrum condition means it is easier
to see it not only as a disability. It is difficult to classify the highly verbal teenager
with Asperger Syndrome, who may well attend mainstream school and be successful
might have some difficulties in social interaction. And if this scenario is not an
example of a disability, what exactly is it? The argument that autism, so long
productively the range of human cognitive diversity is a powerful and revealing one.
the interface, unfixed and porous, between disability and human variation. It has come
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to show us that our categories – abled and disabled, abnormal and normal, even ‘sick’
and healthy – lack the flexibility and detail we require to properly discuss how the
brain works. That it is autism, so often portrayed as a condition that highlights what
someone does not have, that illuminates this ‘lack’ is, of course, a nice irony.
domain and part of contemporary cultural history as never before. One outcome of
this is that it has increasingly achieved a presence in law and legislation. In 1996, the
European Parliament produced the Charter of Rights of Persons with Autism, which
asserted that those with the condition were entitled to the same rights and privileges as
all other Europeans, and called on European Union member states to produce
legislation that would enforce this. In the UK, this catalyst, combined with other
developments, led to the 2009 Autism Act. The Act is the first piece of national
disability-specific legislation, establishing the terms of the provision of care for adults
with the condition. Such a development marks a significant increase in profile: autism
was not mentioned in any parliamentary legislation in the UK until the 1970
Chronically Sick and Disabled Persons Act, and its inclusion here was within a list of
cited conditions that lacked any details specific to the condition itself. In the US, the
Combating Autism Act became law in 2006, committing federal funds to aid medical
research as well as social and educational services. That autism is a condition seen in
terms of ‘combat’ in the US reflects the widely held opinion that it something that
should be ‘fought’ or opposed. We will discuss this outlook, and the reaction to it, in
Part Three, but it is worth acknowledging that alongside those who welcomed the new
Act because of its commitment to addressing the condition were others concerned by
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the characterization the legislation contained, especially the idea that the language
The various institutional histories of autism are ongoing, and they will
continue to change as the condition becomes more and more a part of public life. But
there is a part of the history of autism, and one that is arguably unique, that has not
taken place in the arena of medical research or been defined by pressure groups and
parliamentary lobbying. This is the story of autism as a set of cultural and fictional
narratives, one that parallels the other histories discussed here and arguably has had as
side to autism that has received relatively little analysis and yet exerts considerable
power, and it is worth looking at in some detail. What we know about autism may
One of the most remarkable aspects of autism is that, for all of the controversies
surrounding its medical definitions and the similar debates about treatments and
interventions, most people came to know of its existence through a film. Barry
Levinson’s 1988 feature Rain Man, in which Dustin Hoffman played an adult with
autism, brought the condition to a level of global public awareness that surpassed
anything that had existed prior to this point. It has become a cliché to talk of Rain
Man in connection to autism, and many who have or work with the condition become
weary when it is mentioned, seeing its depiction as dated and increasingly irrelevant.
But the importance of the film in historical terms should not be downplayed. It not
only created a huge impact in and of itself, but it became the template for many
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subsequent representations of the condition, depictions that seeped into public
consciousness to create ideas about the condition that still exist today. It is hard to
think of any other medical condition or disability that has had a similar breakthrough,
one where a fictional narrative has seemingly provided central ‘facts’ about its nature.
Levinson’s film to achieve such prominence is, in part, another example of ‘what we
don’t know’ about autism. In the mid 1980s, at the time of Rain Man’s conception,
scientific opinion on autism was still sufficiently divided that fiction was able to fill
the vacuum created by the lack of consensus. In the absence of any established
definition of the condition, a license was given to educated speculation about its
Morrow, went out of their way to consult as many experts on autistic behavior –
production scientific credibility. For all that they had a story they wished to tell, the
filmmakers wanted to ground their portrayal in the available knowledge of the time.
That such knowledge was inevitably partial, and that it was necessarily selectively
used in the establishment of character and plot, meant that fiction and legitimacy were
version of autism that was taken by many as being factual, even if this was far from
the case.
Babbitt (Tom Cruise) and his older brother Raymond (Hoffman) once the former
discovers, following his father’s death, that the entire family estate has been left to the
latter, a sibling that Charlie did not know he had. Feeling that the money is rightfully
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his, and needing it to pay off his creditors, Charlie takes Raymond from the Ohio
institution where he lives, against the wishes of the doctor in charge, and drives him
to Los Angeles. On the journey, Charlie’s initial prejudices towards Raymond and his
understanding and, finally, brotherly love. This culminates in Charlie’s attempts, near
the end of the film, to argue that Raymond should be allowed to stay in his care.
When it becomes clear that this is impossible because of the nature of Raymond’s
disabilities, Raymond returns to Ohio, with Charlie promising to visit him in the near
future.
At heart, the film is a sentimental drama that uses the generic trappings of the
road and buddy movie formats to develop the relationship between the brothers. As
Charlie learns more about Raymond and his autism, he recognizes the flaws in his
own character. This is not a new story: the idea that disability, with its suggestion of
mental ‘vulnerability,’ can provide insight for the non-disabled is a much worn
recognizable from any number of other contexts (its use in race narratives is common
for example), and it usually works to objectify the character with any form of
difference, here promoting the disabled figure either as a figure worthy of pity or,
Whatever the dramatic success of the film, in the wake its release and considerable
success (it won 4 Academy Awards, including those for Best Picture, Best Director,
and Best Actor in a Leading Role for Hoffman) it was the representation of autism,
rather than the orthodox sentimental narrative of individual growth, that commanded
most attention.
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Hoffman’s portrayal of Raymond created a blueprint for subsequent depictions
of autism that lasted until the beginning of the twenty first century. His performance
combined mannered body movements, often awkward and stilted, with a robotic-like
voice, and both Raymond’s movement and speech in the film are noticeably repetitive
and limited. Raymond rocks from side to side, avoids eye contact wherever possible,
and repeats key phrases to comfort and orient himself during moments of stress.
Because of the fact that the idea of an autism spectrum was not fully established by
the late 1980s, this physical representation was taken to be evidence of what autism
looked like, a template that suggested the signs to be recognized. And this was
especially true because of the status of film as a visual medium. The majority of the
audience who went to see Rain Man would never have met anyone with autism, but
now here on the screen was a depiction that allowed people to see what the condition
But it was another dimension to Raymond’s character that gathered the most
attention, and would have profound effects on the public understanding of autism for
decades to come. Levinson and Morrow created Raymond as a savant, whose special
skills create wonder and awe in all those who meet him. His memory and
mathematical abilities allow he and Charlie to win tens of thousands of dollars when
gambling in Las Vegas, and this scene is only the highlight among a number of other
for NASA” Charlie remarks at one point in the film, when Raymond performs
Charlie’s awe was matched by that of a curious watching public, which had never
seen a portrayal of such abilities in a major commercial feature film. Following the
film’s release, television programs debated whether such skills were fact or fiction;
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some even hosted people with autism who were made to answer complicated memory
Savantism in Rain Man created real complexities around autism. First, because
of the power of its singular representation, it suggested to many that everyone who
had the condition possessed similar skills In actuality, savant ability, which is
those parts of the brain responsible for calculation and memory, is very rare in those
who are autistic. Second, Raymond’s savant abilities created autism as a spectacle. In
the film, he effectively performs the skills associated with his condition, even if he is
only behaving normally in terms of his own self. This sense of performance,
heightened by the fact that Hoffman was performing of course, connected autism to
an idea of behavioral display. The twinning of disability and display has a substantial
history, from anatomical exhibitions to Coney Island freak shows, and Rain Man
created a modern form of what Rosemarie Garland-Thomson has called the “cultural
work” of such ideas of display at the end of the twentieth century (Garland-Thomson
1997, 55-80; Bogdan, 1990). The idea that someone with autism might be able to ‘do
something amazing’ is also a desire to watch such an event, to see something that
appears to be beyond logic or the rational. With the film, autism became fascinating.
It would be unfair to say that the filmmakers should shoulder the responsibility
for all these consequences; the desire on the part of the production staff not to
misrepresent the condition was clear, even if both Levinson and Morrow have
admitted that they chose autism for Raymond’s character because they believed the
metaphors for the kinds of 1980s capitalist excesses they hoped to critique. Rain Man
also created a market for autism, one based upon the public fascination it produced
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and, Hollywood being Hollywood, it was not long before other films were made that
had the condition as a central focus. From the early 1990s onwards, a number of
feature productions (across a range of genres) dramatized autism, often taking their
cue from Rain Man and including special talents or abilities. This is true of films
such as House of Cards (1993), Silent Fall (1994), Cube (1997) and Mercury Rising
(1998), all different types of film that nevertheless have a character with autism who
possesses a special skill. In addition, it is arguable that the success of Levinson’s film
also created a space for the popular reception of high profile and widely successful
features such as What’s Eating Gilbert Grape (1993) and Forrest Gump (1994).
During this period, the Rain Man stereotype was consolidated and the condition
seemingly fixed in the public mind. The suggestiveness of these stories should not be
Since the 1990s, the autism narrative has become more varied. Increased
knowledge about Asperger Syndrome has allowed it to become the subject of feature
films, such as Mozart and the Whale (2005) and Adam (2009), in its own right. Films
such as Snow Cake (2006), Ben X (2007) and The Black Balloon (2008) have moved
isolation and obsessive gaming, and in The Black Balloon to questions of family, have
understanding of the condition. In addition, the condition in all its forms has become
more frequent in literary and television narratives. The global success of Mark
Haddon’s 2003 novel The Curious Incident of the Dog in the Night-Time, a book
particularly successful with teenagers, worked in many ways as Rain Man had,
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have produced fiction, poetry and life-writing. In television, it features in a number of
types of drama: crime drama often uses a character with the condition as some form
of ‘silent witness,’ while children with autism animate the kinds of family drama in
which parental love is tested (and usually celebrated) by the presence of a disabled
child. There are more documentaries made about the condition now, and autism has
even made it to reality television; in the UK, 2010 saw ‘Autistic Superstars,’ focusing
how those with autism learn to drive signals that we have come a long way from the
In part the various cultural narratives of autism have simply run parallel to the
with the facts of autism and sought greater definition and clarity as to its
manifestations, we have also produced more stories about it. But the relationship
between narratives about the condition and the increasing general knowledge around
it is more complex that this: we think more about autism now because it seems to fit
with our appreciation of our own time as one dominated by technology, for example,
and the easy associations between autism and computing (the ‘hard wiring of the
brain’ etc.) create clear metaphors that seem apt when we consider how the condition
reflects our contemporary moment. And this idea of the brain being ‘wired’ in certain
ways works to remind us that we are more interested in neurology now than we have
ever been; the ways in which neurology has come to replace psychology as a
mechanism for understanding human behavior has been a noticeable feature of the last
decade, and not simply at the level of scientific research. Here again autism seems the
zeitgeist condition, a way of being in the world which makes these associations seem
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that bit clearer. At the same time, however, part of the continued fascination with
autism is still precisely that it suggests things that are beyond technology, science or
rational thought. The increased focus on the condition has not reduced its status as an
enigma or mystery; it still talks to what we don’t know in ways that are powerful, and
arguably this too fulfils a need. We like stories that take us beyond our
comprehension, and as long as the causes of autism remain unclear then this aspect of
All medical histories are unfinished in the sense that ongoing research revises what
we know about the body and mind, but it is fair to say that this is more the case with
autism than with other conditions. As this section has shown, much of the history of
the condition has been recent, and we should be aware when we talk about autism that
we are very much in the formative historical stages; it is very likely, for example, that
the singular category of ‘autism’ will not be able to hold all the different variants of
the condition that will be come to be understood, and old categories may well be
from DSM-V because of new ideas surrounding the proper description of the
condition. All the research, scholarship, arguments and opinions being produced now
may well look very strange when viewed from the perspective of hundreds of years in
the future. The history of autism at that point may see our thoughts and interventions
At the same time, the history of a period such as that dominated by Bruno
Bettelheim reminds us that the need to clarify and seek knowledge is a process that
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the present demands. Whatever the arguments that have taken place in the past, there
have been significant developments through the historical changes of the last fifty
years. For all that the medical research produced in the second half of the twentieth
century remains pivotal to our ability to discuss autism today, possibly the central fact
that has emerged from a consideration of that history is that people with autism are no
longer thought to be useless. The ‘natural’ assumption that those with the condition
would never develop, and could offer nothing to society, was common even thirty
years ago. But if we look at the ways in which all the various historical factors
interact, we see that the shapes that emerge point to the growing legitimacy of the life
lived with autism. It is true that ignorance and misunderstanding still surrounds the
consequences, but our own historical moment values autism as never before. It is no
longer the default position to believe that all those with the condition lead lives that
are tragic, and the difficult history that has led us to this point therefore has to be seen
in terms of achievement, for all that the situation is far from perfect. If, in the
contemporary period, history is seen less as the parade of grand narratives and more
the product of small or everyday activities, then the simple fact that we can talk of
day-to-day autism, even ‘ordinary’ autism, free from the sense that it is an abstract
Despite this, however, that supposed writer of a future history of autism may
well look back at the early decades of the twenty first century and choose to
conflict are still common. There are those who would disagree, perhaps passionately,
with the sentiments I have just expressed in the last paragraph, seeing them as
optimistic and naive, or feeling that they miss the point altogether. For some, autism
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is a difficult and horrendous condition that we would all be better off without; those
who feel this would like the history of autism to belong firmly to the past with no kind
of future. It is entirely appropriate that the final third of this book is devoted to the
controversies that surround the condition, because there are so many and they produce
such strong feelings. Part of understanding autism today lies in trying to plot a path
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Part Three: Major Controversies
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A lack of consensus
A number of the major controversies surrounding autism have already been discussed
in Parts One and Two of this book. The complexities surrounding diagnosis and the
differences of opinion about treatment, for example, are frequently very controversial,
and arguably there has been no greater controversy than the damage done to those
with autism, and their families, during the period when psychoanalytic approaches to
and the arguments of the here and now that I want to focus on in the final third of this
study. Roy Richard Grinker has termed the discussion of autism at the start of the
twenty first century as a “perfect storm” (Grinker 2007, 172) of competitive claims to
knowledge. Such a storm has arisen because of a number of interrelated factors, all a
product of the increased attention the condition has received in the last decade. These
include the widening of the diagnostic criteria for autism and greater referral to
doctors, but also the juxtaposition of such advances in medical knowledge with the
history, cannot bring themselves to trust that knowledge. They also include the
substantial increase in media coverage of the condition, in which any new autism
development has frequently received widespread comment and opinion, whatever its
veracity. To repeat something that has been a dominant theme of this book, these
controversies stem frequently from what we don’t know about autism; the space that
the absence of consensus has created has made it easy for argument and counter-
argument to flourish.
the fact that still eludes medical research. The battle of opinions over what causes
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autism has taken significant new turns since the rejection of the psychodynamic ‘bad
parenting’ model, moving now to include questions of environment, toxins and even
conspiracy theories about government collusion with the pharmaceutical industry. The
second highly controversial topic is that of whether autism can be cured, or whether
this is even an appropriate question to ask given what we now know about the
condition. As we shall see, the debate over any potential cure creates passion and
hostility on all sides in a manner that few other topics connected with autism can
rival. The arguments over cause and cure are especially important because their terms
often guide the fundraising activities of the major foundations that pay for research
into autism. Winning the debate over what is deemed to be important in relation to
autism, and why, may well unlock the money that will pay for the medical studies that
In this section, I will look at these two broad areas and the numerous issues
that come under their respective headings. I will then move out from this to consider
how they affect those who live with autism and what conclusions we can draw about
reinforce the fact that all conversations about autism that confine themselves to the
abstract, to only the idea of what might cause the condition for example, run the risk
of ignoring the very people who are the reason for the discussion in the first place. Far
too often, the heat and light created by autism controversies are disassociated from the
realities of those who have the condition, and a lot of energy is wasted that could
more profitably be used in thinking about actual autistic lives. The classic disability
slogan, ‘Nothing About Us Without Us’, is as true of autism as of any other condition
of disability; what writer with autism Richard Attfield has called becoming “’talked
about’ instead of ‘included’” is still more common than not (Biklen 2005, 240). There
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is a real need to understand why people argue as they do about autism, but there is an
equal need to make sure that those arguments are made meaningful through a
Causing Autism
with associated genetic influences, there is still significant debate about why the brain
in those with the condition might develop as it does. Is this something that is pre-
in utero? Or might it be connected to the ways that the brain grows and changes after
birth, a process that might be organic or one that could be influenced by external
factors? There are arguments that seem to supply evidence for a range of possibilities:
the ways in which the brain develops during the first years of life points to the
possibility that it might be during this period that the structures of the brain
responsible for autism takes their final form; and, in support of potential external
causes, one of the most-repeated observations about the development of autism in the
very young is that the onset of the condition appears to happen suddenly around the
age of two. Up to that point, some parents observe, their child display no signs of
autism and appear to be developing in line with other children. In these cases, autism
appears to arrive unheralded, and it seems only natural to assume that there is some
cause for the change, something that happens. It should be stressed that such opinions
are usually anecdotal, and no research has given any indication of the commonality of
this kind of onset of the condition, but it is a point of view made with some regularity
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Working out which of the above fits where, or even which is correct, in
understanding the causes of autism has occupied many minds in the last decade. This
has appeared as a particularly pressing debate because of the claims that we have
witnessed an autism ‘epidemic’ during this period. The argument that there has been
an epidemic is based on the fact that there are more diagnoses of autism now than
there have ever been in history, and that this comes at a time when more is known
about the condition than ever before, a fact that should lead to more accuracy in the
diagnostic process. Much is made of the fact that current thinking has established that
autism affects around 1 in every 110 people, whereas in the 1970s it was closer to 1 in
2000. How else can this be described but as an epidemic? As Grinker has observed,
calling up associations with plagues that can sweep through the streets,
something contagious in the air that you breathe or in the food you eat,
threatening the ones you love. With autism, the label of “epidemic”
autism from another person, but what if it can be ‘caught’ in some other way, from
another entity, one that surrounds us or can enter our bodies in some fashion?
‘Epidemic’ seems to suggest that such an event might indeed be possible; indeed it
We shall return to the issue of increased diagnosis, but for now we might
consider what it was that might have suggested to some that this kind of contagion
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has been happening, given the fact that scientific research has, for a number of years,
showed this not to be case (Gernsbacher, Dawson and Goldsmith 2005; S. Kaufman
2010). Broadly, such thinking falls into two camps: firstly, that there is some
environmental aspect that is proving to be toxic for those who might be in some way
secondly that it is caused by vaccination, the deliberate introduction into the body of
elements that affect the structure of the brain in a manner that allows the condition to
develop. One example of the environmental argument was put forward in 2006, when
working report that a growth in autism among children was due to an increase in the
provision of cable television combined with precipitation levels that forced children
inside to watch more television than they might if the weather was less wet. Waldman
California, Oregon and Washington – and found that the rise in the occurrence of
autism in children matched the spread of available cable television in rainy locations.
In 2008, Waldman and his associates published some of the findings – those
connected to precipitation, the television link having been dropped – in the journal
Cause Autism?’ asked Claudia Wallis in an article so titled which was published in
the October 2006 edition of Time magazine. Noting that searching for the causes of
the rise in rates of autism was “one of the most anguishing mysteries of modern
medicine,” Wallis picked up on the claim in Waldman’s study that nearly 40% of
autism diagnoses in the 3 states in the study were the result of television watching due
to precipitation. In her article, Wallis was clearly skeptical about the findings, though
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interestingly one of the ways that she suggested its limitations was to cite other
possible environmental factors, such as indoor air quality, or levels of mold and
mildew produced by heavy rain. Wallis signed off with the observation that “There
are probably many routes to the disorder, involving diverse combinations of genes
we lead our modern lives might be poisoning our children. It is no coincidence that it
surrounding child development. We all know children watch too much television, the
logic appears to run, and that this probably isn’t good for them; what if, in fact, it is
so bad for them it causes autism? Here we are back with the idea of autism and
contemporary fear (that society is failing its children) because of its status as some
kind of enigmatic, mysterious, unknowable – and yet malign - force. In their defence,
Waldman and his co-authors would probably point to the fact that their study was
based on statistical evidence, but that in turn only again serves to remind us of the
fact that what we don’t know about autism allows for all kinds of conclusions,
quality.
predisposition to autism (whether that be genetic or some other physical form) and an
environmental aspect that serves to trigger the condition, it is safe to say that the idea
that watching television in wet weather causes autism is one example where we can
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dismiss the notion that an academic study is producing any kind of ‘fact’ worth
consideration. It is far more likely that what is at work here belongs to the realm of
theories of autism causation (others include overhead power lines and exposure, of
the child or pregnant mother, to pesticides and other chemicals) is a worry that we
live in a toxic age, and that this must somehow seep into our bodies in ways we have
yet to understand. This also, of course, establishes autism as exactly the kind of
poison, it becomes very difficult to make the argument that it is a form of human
noxious disease.
The idea of poisoning is also central to the very high profile argument that
autism is caused by vaccination. Again, the question here is one of toxins, specifically
the use of heavy metals, such as mercury, as preservatives in vaccines. One such
half mercury in its make up by weight. In 1999, the American Food and Drug
Administration (FDA) published a report noting that children who received multiple
vaccinations that contained Thimerosal were being exposed to levels of mercury that
were significantly above federal guidelines. The outcry this caused was
FDA report could only cause concern, especially as it appeared on the back of an
even more significant publication which, although it did not cause much controversy
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In 1998, the gastroenterologist Andrew Wakefield, working at the Royal Free
leading British medical journal the Lancet, focused on bowel symptoms and findings
According to the parents of some of the children involved, the onset of the symptoms
had taken place very close to the time they were given the combined Measles, Mumps
and Rubella (MMR) vaccine. The paper itself did not suggest that the MMR vaccine
was a trigger for autism, though it did indicate that there was a real connection
between gastrointestinal illness and autism, and that the measles virus in the vaccine
caused infection in the intestine that allowed harmful protein to enter into the
bloodstream and work their way into the brain. It also recommended that there should
be further research undertaken on whether the vaccine was in any way connected to
autism, and in the press conference publicizing the research, Wakefield declared a
lack of confidence in the combined vaccine, advocating that it would be best if the
Initially, and despite some front page headlines the day after the press
conference, reporting on the Lancet paper was relatively low key, but in the two years
that followed, and especially as Wakefield made more claims for the lack of safety of
immunization, the controversy grew. That this coincided with the FDA report on
Thimerosal only increased attention, even given the fact that the preservative was not
actually used, and never had been, in the MMR vaccination. In the US, an Institute of
Medicine (IOM) committee was established in 2001 to review the safety issues
surrounding immunization, looking at both Thimerosal and MMR. Late in that year it
published an interim report that said there was no evidence to suggest any causal link
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between Thimerosal and the development of autism, though it also suggested that it
was sensible to remove the preservative from vaccines given to babies, children and
pregnant women. It also observed that the hypothesis that developmental conditions
could be caused by vaccines that contained Thimerosal was one that had biological
plausibility, and that “the committee notes that its conclusion does not exclude the
possibility that MMR vaccine could contribute to autism spectrum disorder in a small
In 2004, the IOM committee published a final report, which included results
taken from epidemiological surveys in a number of nations, concluding that there was
no link between either the MMR vaccine, or those containing Thimerosal, and autism,
and that vaccines were proven to be safe in any number of studies. But by then it was
too late to stop the controversy. The very idea that toxins were present in vaccines,
combined with the continuing publicity surrounding Wakefield’s research, and the
long, other researchers began to publish studies noting associations between vaccine
toxins and autism, even suggesting that the condition itself was a new form of
mercury poisoning. That this research was not appearing in peer-reviewed journals,
and that many of those producing it were not vaccine experts, toxicologists or
public story. Influential feature articles in widely read magazines, such as Time and
Rolling Stone, and front page reports in many newspapers not only reported on the
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link between immunization and autism, but also suggested possible cover ups by
book that had as its subtitle ‘Mercury in Vaccines and the Autism Epidemic: A
Medical Controversy.’ In great detail, Kirby both dissected the arguments of the
previous few years and dramatized conversations and events, celebrating parents and
damning the authorities for failing to prevent children falling into what he termed the
“shuttered hell of autism” (Kirby 2005, 3). The anti-vaccine movement had a number
Questions went right to the top of government. Starting in April 2000, House
of Representatives member Dan Burton, who has a grandson with autism, convened a
hearings, Burton argued that there was no doubt that there was an autism epidemic,
representatives from the Centers for Disease Control and Prevention. And, in what
was arguably the most worrying development of all, public concerns over the vaccine
Wakefield’s work was most prominent, confidence in the MMR vaccine fell to 41%,
with some parents too worried to have their children vaccinated. Overall, the take-up
rate for the vaccination fell from over 90% before the Lancet article, to below 80% in
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In the middle of such outcry, autism was characterized firmly as a disaster. It
was a condition to be argued about more than understood, thrown this way and that
nightmare. Stories reproduced in the national press told of parents watching as their
child regressed into autism before their very eyes in the days after vaccination,
becoming ‘lost’ in the grip of some horrific visitation. The very idea of ‘regressive
autism,’ for some a subset of the wider condition, came to dominate much media
reporting. Autism ‘took children away,’ and the idea that this was due to some failure
of medical authority made the situation unbearable. The general suspicion that
scientific and medical research was too distant from the public, and that this was true
of government associations as well, became full blown. Wakefield was hailed as the
people’s champion, a heroic figure standing up to both big business and big
2000, “I know from listening to parents” (Murray 2008, 189). He was even the
subject of a television drama, entitled Hear the Silence, which screened in the UK in
December 2003 and which characterized him in just such laudable terms, while
making it clear that drug companies had a vested interest in suppressing the truth.
Those parents who did object to the anti-vaccine arguments, not wanting to see their
children defined as hosts of toxins and poisons, found themselves in a minority and
were often subject to abuse and censure. The various national health associations
around the world, unable to prevent the furore that, in part, their own lack of ability to
Wakefield’s paper, study after study looking at the same research questions found no
link between vaccination and the development of autism. In addition, from the start of
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the year onwards newspaper reports began to investigate a possible conflict of interest
surrounding his research, after it emerged that, before the Lancet article was
published, Wakefield had accepted money on behalf of a law firm representing anti-
vaccine campaigners and that a number of the parents who had identified the MMR
vaccine as the cause of their children’s autism were also litigants in the action.
Unaware that this had been the case when pursuing their original research, in March
2004 ten of Wakefield’s Lancet co-authors retracted any possible interpretation that
the vaccine might be linked to the condition. In 2007, the UK’s General Medical
Council, the body responsible for the supervision of doctors and the implementation
of medical ethics, began an investigation into Wakefield’s conduct, analyzing both the
possible conflict of interest and the fact that he and his research team had failed to
obtain the necessary permissions when working with the children in his study. In
February 2010, the Lancet retracted the 1998 paper, removing it completely from the
published record, and in May 2010, having been found guilty of serious professional
misconduct, Wakefield was struck off the medical register, barring him from
Also in 2010, and following hearings that had started in 2007, the US Court
of Federal Claims ruled that Thimerosal does not cause autism, backing up a similar
ruling made in 2009. Over 5,300 claims that had been filed by the parents of children
with autism, claiming that vaccines were responsible for their child’s condition, were
brought before a special ‘Vaccine Court,’ part of the federal Vaccine Injury
children are harmed by vaccination. Three individual tests cases, in effect the
circumstances of three autistic children, were heard before the court in great detail to
determine the wider claim. In all three cases, the court ruled that vaccines were not
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responsible for the development of autism in the children concerned. The latest ruling
is subject to appeal, but it seems to be clear that the tide has turned against the anti-
vaccine movement.
methodologies, have shown that rates of the condition increased even after
Thimerosal was removed from vaccines, or even if (as has been the case in Japan) the
three elements of the MMR were given to children separately. The controversy that
suggested that inoculation might be the cause has been, however, the most visible
discussion of the condition in the last decade. The ‘perfect storm’ identified by
Grinker was, at its height, arguably almost as damaging as Bruno Bettelheim’s thesis
surrounding causation in the 1960s. Blame for this should not simply be laid at the
door of certain individuals or groups who pursued specific ideas or theories, although
industry in which claims against vaccine safety have become a business. The failure
of medical authorities to reassure the public itself betrayed confusion about the
condition, and the culpability of the media in chasing stories displayed how there is
still a clear desire to sensationalize autism in terms of ‘mystery.’ The sharp rise in the
number of diagnoses seen in the last 10 years is almost certainly due to a number of
overlapping issues: a broadening of the criteria in assessing the condition (to include,
for example, more cases of Asperger Syndrome); increased knowledge, on the part
of both the public and medical practitioners, which has resulted in more referrals; the
fact that the old statistics may well have been inaccurate because of limits in how
autism was understood; greater precision in research, which has led to improvements
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and measurements used; and a simple tendency, now that autism is more well know,
for the diagnosis to be given in borderline cases where, in previous years, another
label may have been applied. For all the passion surrounding the topic, there is no
Where this leaves the debates about the causes of autism is in a quieter, if still
unsure, space. As we saw in Part One, there is still no certainty about causation, or
indeed about the exact boundaries research should follow, and this may well remain
the case for some considerable time. In such an absence of knowledge, and the
subsequent legitimate concerns about the way the condition is characterized and
discussed, there are still those who will believe in the various toxins arguments, and
indeed Wakefield still has his supporters. People are still convinced by what they
sense is true, despite the clear medical evidence to the contrary; as Paul Offit reports
hearings on the subject stated her certainty that autism was caused by vaccines
“regardless of what the research tells us” (Offit 2008, 207). More than anything else,
the question of what causes autism is symptomatic of our need to know, to deal with
the issues of interpretation with which we started this book. In spite of this, it is worth
acknowledging that it is highly likely that knowing the cause of the condition would
not affect the lives of many who are autistic, nor that of their families. Having autism,
or living with it, will not be rectified by being able to push some button that might be
will be vital in addressing issues surrounding early intervention in the lives of some
who are autistic, but there will be others for whom it will make no difference at all; a
life with autism will still be exactly that. Knowing what causes autism will, however,
be hugely important, not just because of the ways in which it makes further research
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possible, but because it will fill in a blank and satisfy a desire for an idea of
completion. In addition, it might reduce the kinds of misadventures that have marked
controversy. But the arguments about causation, however heated they may have been,
appear to be in a minor key when placed next to those surrounding the question of
whether autism is a condition that should be cured. There is continuity between the
two questions of course: some of the parents involved in the vaccination debates were
animated by the belief that establishing a cause would make a potential cure
available, and some of the ideas about curing came from the causation debate; but the
majority of families involved appeared to have wished mainly for ways to care for
their children as effectively as possible. There are those, however, who believe that it
is viable, and indeed desirable, to counter the ‘regression’ into autism, to ‘rescue’
individuals from their lives with the condition or to look for early indications that
might then be corrected. These beliefs, when set against those of others who see them
as a threat to their very existence, make for a highly combustible mix, and another
huge controversy that goes to the very heart of what autism is.
There is a point that should be made right at the start of our discussion of this topic,
one similar to that made in the conclusion to Part One. All serious research into
autism acknowledges that it is a lifelong condition and that it is built into the fabric of
the person who has it. It is, as we noted earlier, not an illness. As such, it cannot be
cured. Why, then, does anyone think that the opposite might be true? What is it that
somehow does not communicate itself about this aspect of the condition? Here, what
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is meant by the word ‘cure’ when used in relation to autism is especially instructive.
Some would disagree with my first 4 sentences above, asserting that the research is
wrong and indeed that autism can be cured, in the sense of being made to go away,
and in this context it is also discussed in terms of words like ‘recovery’ and ‘healing.’
Others talk of cure to mean a process of making things better, of eliminating the most
disabling aspects of the condition, in the way that the word might be applied to a
process of treatment. For another group, the word cure is a threat, a barely disguised
want a cure with considerable passion and others oppose its place in any debate with
equal intensity. These, we might feel, are all interesting positions given our starting
For all that the question of curing autism appears to be a scientific debate, it is
wise to see it, as much with so much about the condition, in terms of metaphor.
become ‘lost in.’ That this description is frequently combined with an idea of the
condition being ‘hellish’ only reinforces the notion that, rather than being discussed
in terms of scientific rationalism, some depictions of autism seem more aligned with
the Purgatorio, if not the Inferno, sections of Dante’s Divine Comedy. As we shall
see, both the metaphorical and the religious aspects of such a symbolic link do indeed
play a significant part in the debate surrounding curing. The language of curing
autism is about reclamation, saving and rescue, processes often seen in terms of acts
of faith.
to publicizing the ‘truth’ that children with the condition had been poisoned by
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mercury. Generation Rescue used Handley’s wealth and the support of others to take
out full-page adverts in many US newspapers, including the New York Times, to
Armed with the idea of angelic rescue, Generation Rescue made provocative and
highly public interventions in the vaccine debates, asserting that autism is a result of
the introduction of toxins into children and that it can be reversed. Indeed, “Autism is
Reversible” is one of the banner headlines on the current Generation Rescue web site,
along with advice on how to “recover your child from autism.” The organization is
now fronted by the celebrity Jenny McCarthy, like Handley also the parent of a son
with the condition, and a guest on a number of major television network talk shows in
the last three years. McCarthy’s 2007 book, Louder Than Words, detailed her journey
to ‘heal’ her son Evan, whose autism was suggested to her, McCarthy asserts, in a
that the organization does seek some degree of scientific legitimacy through an
association with those studies that agree with its position on mercury and vaccines.
The symbolism of autism being a ‘descent into hell’ finds its corollary in the idea of a
enables. These kinds of discourse, and metaphors, suffuse the cure movement, even
down to the detail of the methods by which autism can be removed from the child
who has it. Generation Rescue and a number of other anti-vaccine groups advocate
the use of chelation therapy, a chemical process by which toxic mercury is drawn out
of the body through the application of a synthetic amino acid that binds with the
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mercury and eliminates the heavy metal;, and one that has proven medical effects in
dealing with acute toxic metal poisoning. Handley claimed to see a dramatic
improvement in his own son following the daily application of a chelation chemical
which was rubbed into his legs and forearms, and other parents have noted similar
results. The laying-on of hands to expel autism in this way has an overt religious
dimension, one matched by the ‘recovery’ that takes place as a consequence. If this is
not an explicit act of exorcism (and, as we saw in Part One, such activities have been
supporters. It is very expensive and scientific testing has produced no evidence that it
has any effect whatsoever in treating autism (Weber and Newmark 2007). But such
concerns are not important when it is a question of belief or proclamation of faith that
is required. It is not the only ‘miraculous’ procedure that has been claimed to cure
autism. In 1998 and 1999, the use of secretin, a hormone that controls secretions in
speech and eye contact almost immediately after its introduction, creating a huge
demand (and a significant price tag) for the substance. Medical tests in the years that
development of children with autism than similar forms of treatment using a saline
solution, but the idea of the miracle cure was a powerful phenomenon that, for many,
transcended the slow and dry process of proof derived through medical research.
longstanding and public processes of treating the condition is the Son-Rise program,
established by Barry and Samahria Kaufman, and run out of the Autism Treatment
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Center of America in Massachusetts. Son-Rise, for all that its origins lie in the
treatment the Kaufmans developed for their own son Raun, makes the notion of
resurrection clear through its very title. The attention the Kaufmans have received has
made their program mainstream, and the nature of its claims to transformation is
clear: they have published books, To Love Is To Be Happy With: The Miracle of One
Autistic Child (1976) A Miracle To Believe In (1981), and Son-Rise: The Miracle
Continues (1994), been the subject of a 1979 television film – Son-Rise: A Miracle of
Love - and toured extensively promoting their approach to autism therapy, based on
miracles in the Son-Rise story arguably threatens to make them commonplace rather
than exceptional, but the message is clear: recovery and cure from autism is possible
Raun Kaufman’s recovery allowed him, in his own words “to emerge from the
this last phrase – ‘without a trace of my former condition’ – that is so inviting to those
who seek to cure autism. The purging of the body to remove the condition, however it
might be achieved, is the ultimate goal. That this creates an idea of autism as either a
toxin or some form of malevolent presence goes without saying, and the language of
combat that accompanies such characterization enhances this notion of the battle
required to remove the condition. 1995 saw not only the formation of the highly
influential foundation Cure Autism Now (CAN), but also that of Defeat Autism Now!
(DAN! – the exclamation mark is an official part of the title, suggesting a sense of
urgency), based at the Autism Research Institute in San Diego. That curing and
defeating might go hand in hand in this manner only gives the conflict metaphor
greater clarity, and we have seen already how such language made its way into the
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2006 Combating Autism Act. In 2007, CAN merged with Autism Speaks, currently
the largest autism global foundation, and an organization that – as its website claims –
has raised more than $89 million to fund autism research since 1997 (Autism Speaks
2010). For its part, Defeat Autism Now! continues to operate regular research
If defeating autism carries overtones of religious fervour and ‘the good fight,’
then healing the condition suggests a different kind of spiritual approach. The
enigmatic nature of autism has always acted as an invitation for holistic theories
about its causes and manifestations. For some, its status as a mystery means that, in
seeking to understand it, we need to look beyond the boundaries of rational, scientific,
Free from obsessions with chemical treatments and medical studies, such treatment
connections create insights into the condition. In the 1980s, for example, the theory
behaviors had substantial support, for all that the particulars of such a connection
suggest that these kinds of ideas might have lost their appeal, in fact the opposite is
true. A book such as Rupert Isaacson’s The Horse Boy: The True Story of a Father’s
Miraculous Journey to Heal His Son, which was published in 2009 to considerable
acclaim and moved quickly on to both the New York Times and the Sunday Times
bestseller lists in the US and UK, before being made into a documentary film that had
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the latest example of a narrative in which spiritual ‘healing’ counters the presence of
some kind of static state into which an individual regresses, never to change. Children
with autism might not develop speech when two years old, but a number will do so
before they are ten; they may avoid all eye contact when they are three, but will
happily hold the gaze of a parent, and clearly respond to emotions, when they are
twelve. More than anything else, stories of curing and healing autism are indicative of
a belief that change is possible and that, when it comes, it is somehow ‘miraculous.’
The idea that the change being witnessed may well just be normal, part of a process
of development that may not be that of children who are not autistic, but is
even if it is something that takes place all the time. Like all children, children with
autism grow up. That some forget this is indicative of the extent to which the idea of
Those who are autistic themselves often view the curing or healing debates
with a mixture of hostility and resigned weariness. The hostility is reserved for the
advocates of aggressive or invasive chemical treatments and for those who seek to
transform individuals with autism, without any thought for their consent, into
something else. The Aspies For Freedom website makes opposition to any idea of a
cure explicit in its mission statement, noting that “dangerous non-medically approved
therapies based on discredited theories or religious belief” and “therapies that would
be called ‘torture’ if they were used on non-autistic children” are still all too
prevalent. “To ‘cure’ someone of autism,” the mission statement continues, “would
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be to take away the person they are, and replace them with someone else” (Aspies For
Freedom, 2010). Equally, the Autistic Self Advocacy Network (ASAN) cites the need
to “change public perceptions of autism and to dispel old myths and stereotypes that
have led to discrimination and abuse” in outlining its commitment to a greater social
understanding of the condition (ASAN, 2010). The weariness comes from having to
‘heroic’ overcoming. “We’re the ones who live the consequences of what anyone
says (or publishes) about us,” observes Canadian artist and autism rights campaigner
Ralph Smith, “I still believe that media will be the deciding factor in whether or not
autistic people are granted human rights. Currently we’re losing badly” (Ralph Smith,
pers. comm).
Smith’s assertion that those with autism are ‘losing’ in the battle over how the
condition is being represented is further evidence that the assertion that the condition
suggesting that a cure for autism is a good idea, a viewpoint returned to with
regularity by the media. Possibly nowhere are the politics of the topic more
impassioned than in the discussions surrounding prenatal testing, where the potential
of research to develop in utero testing for genetic difference offers the opportunity to
possibilities provided by science is countered by the worry that the process might
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current ignorance of the full genetic pathways that might be responsible for the
what kind of autism would it be? Given that there is considerable difference between
‘classic’ autism and Asperger Syndrome, trying to identify specifics of the condition
through prenatal screening may well be akin to attempting to shoot one out of
But the debate goes on. In 2007, Nobel laureate James Watson, famed as one
the possibility of screening for autism might prevent what he termed the “horror and
destruction” that comes with the condition. “We might prevent,” he went on, “some
Watson’s comments on autism went largely unnoticed because, in the same interview,
he also observed that people of African descent were genetically inferior (he stated
that “all our social policies are based on the fact that their intelligence is the same as
ours – whereas all the testing says not really” [Hunt-Grubbe 2007, 33]). Watson was
maverick, his position on autism and genetics, and his misinformation about the topic,
is not unique.
conducted by Simon Baron-Cohen’s team at Cambridge and revealed that high levels
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of testosterone in the amniotic fluid surrounding the foetus in the womb might serve
Independent newspaper, this prompted ‘The Big Question: should mothers be offered
screening for autism, and what issues would it raise?’ (Laurence 2009). For its part,
The Guardian newspaper asserted that ‘New research brings autism screening close
to reality,’ with the feature article written by the paper’s health editor noting that the
research would inevitably provoke calls “for a national debate about the
consequences of screening for the disorder in the womb and allowing women to
terminate babies with the condition” (Boseley 2009) All the media outlets that ran the
study highlighted the controversy of the issue, invoking both the ‘tragedy’ scenario of
individual and family lives blighted by autism, and the risk of losing high-functioning
or savant individuals (Einstein and Newton were cited) if termination was allowed:
‘A prenatal test for autism would deprive the world of future geniuses’ was the title of
The Guardian’s science blog on the day it ran the feature (Randerson 2009)
emerged in the days following the news. Having read the pieces in a number of the
response in which he pointed out that all the major claims of the head- and tag lines in
the various articles, and much of the coverage on the inside pages, was incorrect.
“The new research was not about autism screening,” he observed, adding: “the new
research has not discovered that a high level of testosterone in prenatal tests is an
indicator of autism; autism spectrum disorder has not been linked to high levels of
testosterone in the womb; and tests (of autism) do not allow termination of
pregnancies.” Indeed, as Baron-Cohen pointed out, the research in question “did not
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even test children with autism” at all. Following up on the article, Baron-Cohen wrote
in the New Scientist about the “blatant distortions” in the newspapers, and observed
that the desire for “a simple, bite-size but inaccurate message” had totally
misrepresented the nature of the actual research that had been undertaken (Murray
2010).
excitement surrounding the possibility of genetic testing is palpable. It works not only
in terms of drama, but also through an appeal to an idea of some form of public
benefit, that the eradication of autism will make better for all concerned. “Autism is a
condition that renders both children and parents helpless,” wrote TopNews blogger
Jonathan Sanders in a piece on genetic testing for the condition in March 2010.
“While the child has no idea what to do, think, say or feel” he continued, “the parents
are devastated and have no idea how they can help their child.” Sanders’s
condition, which upsets children, their parents, friends, family and just about
everybody.” But the “new hope” that new research offers, he adds, could change this.
The condition, he announces, can be “made better… thanks to the amazing gene test!”
(J. Sanders 2010). What Sanders and the UK news example have in common, despite
what actually constitutes genetic research into autism. Work being undertaken by
of scientists investigating the genetic basis of autism, is often the source for the news
reports we have just seen. It is necessarily painfully slow, identifying potential gene
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message is delivered, however, is indicative of real confusion about the issues
involved; the manner in which reports abandon the detail of the research for an
assumption of the banner headline produces what is often an outright fiction. The gap
between the ‘facts’ of science here, and the ‘facts’ as they are reported, is substantial.
that makes many families, increasingly gaining their information on autism through
web browsing, push for a cure to the condition that seems to be just around the corner.
At the same time, those who have the condition warn of what they believe to be a
the autism associations that seek respect for neurodiversity refer to those who seek to
cure the condition, whether ante- or post-natal, as ‘curebies,’ a word that has entered
the pro-rights lexicon. Discussion boards are full of links made between curebie
philosophy and the Nazis and other eugenic movements. Amanda Baggs, one of the
curebie thinking in the Information Library section of the autistics.org website. “If
you are working toward cure or prevention,” Baggs writes “and believe that you are
acting out of love or devotion, please realize that the love and devotion are
dangerously misguided, and change what you are doing. It is extremely difficult to
realize that what you have been doing is hurting other people, particularly when you
think you are acting out of a strong love and value for the same people. But working
toward cure and prevention is hurting a lot of people, and a lot is at stake. What may
be thought to arise out of love and devotion, winds up bearing a striking resemblance
The criticism levelled at figures such as Baggs is that they do not represent
those with autism who are incapable of speaking for themselves due to the severity of
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their disability. Some, especially the parents of children with autism, see the pro-
rights activists as being arrogant in their assumption of the position from which they
comment. Countering this, advocates point out that they have coherent and developed
arguments about all aspects of autism, and that cure policies are not in the best
interests of any individual with the condition. They also contest the idea of what
through writing, a choice common to a number of people with autism, many of whom
characteristics. The idea of ‘defeating’ autism is, for Baggs, the taking of “steps
toward the genetic elimination of autistic people – people like me – from the planet”
(Baggs 2010).
There is no sign that the arguments surrounding curing autism will diminish.
the growth of commentary on such thought by those who have the condition. It is
possibly an irony that this stand off is itself taking place at a time when the idea of an
autism spectrum is recognized as never before and that, for all the problems
verbal and articulate person with autism as an example of someone with the condition.
Such increased awareness might suggest that opposition to the idea of termination
produced by genetic screening will increase, but the arguments that there are different
types of autism, and the ongoing revelation of the details of the condition’s genetic
We noted at the start of this section that autism cannot be cured, but possibly
the fact that we are still in the early history of our understanding of the condition will
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reveal this to be a point about vocabulary. Maybe those who believe in curing will
come to say that they actually mean ‘changing,’ eliminating the worst features of
autism to preserve the best, and that ameliorative treatment programs may come from
this. Advocates for the condition, and others, will say that this is impossible, that such
an idea is still fundamentally eugenic. At the same time, if we come to accept the
integrity of a life with autism, then the aggressive ideas surrounding change might
recognition of many autisms, and even the division of the category ‘autistic’ to more
accurately reflect the kinds of humanity the term might encompass (the rumours that
Syndrome and drawing up a more nuanced nomenclature for diagnosing the autism
spectrum are exactly part of such a possible revision). Where those that champion
curing are definitely in the wrong is in their idea that somehow the autistic and the
human can be kept apart, and that to eradicate the former is to liberate the latter. This
is one of the worst by-products of the notion that the condition is some kind of toxin
or malign ‘visitation.’ It is nothing of the sort, and that is a fact that will have to be
accepted. In the end, it is this position that those who wish for a cure will need to
question. To acknowledge that there is no division between autism and ‘the human’ is
to raise serious and substantial issues about how, as a culture or society, we come to
define ourselves. Even as we are immersed in the arguments of the present, arguments
we know to be explicable and vital, might we not also gesture toward a future in
which autism plays a part in thinking about our common humanity? For decades, it
was assumed that autism was such a disabling condition that it, and those diagnosed
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with it, were of no use. What if, however, autism, along with those who are autistic,
It would not be wrong to feel that controversy dominates the ways in which we
discuss autism at the moment, whatever claims we might choose to make about
scientific or social progress. However much those involved in the debates might wish
such controversies would end, they have stubbornly refused to go away. It can feel
difficult to look towards the ways in which understanding autism might develop from
such a position of uncertainty, but it is not an impossibility. And the question of the
relationship between autism and the human is exactly the kind of space where an
most oft-repeated assertions is that it is like being an alien. Those with the condition
often say that living in the majority world makes them feel alien. They struggle in
decoding the subtle clues that others use naturally when stating logic, or pursuing
social communication for example. The idea can be traced back to a remark made to
the neurologist Oliver Sacks by Temple Grandin, one the most famous autists and a
prolific writer and commentator on many subjects connected to the condition. “Much
of the time,” Grandin told Sacks, “I feel like an anthropologist on Mars” (Sacks 1995,
248). Sacks was sufficiently taken by the phrase to use it as the title for his 1995
the concept behind it has filtered down to more general usage: ‘Martian’ or alien
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difference seems an apt shorthand, for all that it is a little glib, to describe the
disjuncture those with autism feel in their interactions with the non-autistic world.
Equally, autists will sometimes note that it is others who are like aliens, so different
are they from that which comes naturally to those who have the condition; and, for
that majority of the population of course, it is autistic behavior that is the alien
phenomenon and seems beyond understanding. In all cases, however, the same logic
for autism as part of the pattern of human difference if we disallow those with the
condition entry into the category in the first place? Ian Hacking, who has explored
philosophical issues arising from the notion that autism constitutes some form of alien
subjectivity, wonders if in fact the yoking together of the two terms says less about
autism “than what it reveals about what it is to be human” (Hacking 2009, 44). In
other words, despite what might seem to be an unbridgeable distance between the
human and the alien, each position has a number of points of contact with the other.
Possibly here we have a more appropriate metaphor for autism than many of those
that currently circulate: a condition that seems unconnected to the core experience of
As we touched upon in Part One, there is another context, and another set of
details, that also invoke a relationship between the alien and autism. This the sphere
that leads to multiple questions concerning embodiment and the connections between
people and their environment. Many who work in Disability Studies are drawn to the
category of the posthuman, since it offers a potential subject position that includes the
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disabled body and mind precisely because of its critique of humanism (arguably, it is
the force of humanist thinking that creates the language that sees autism in terms of
disabled body, and if – as some assert – we live in a posthuman world, then that world
can be one where disability is central and not peripheral. As a specific case in point,
autism seems especially suited to this line of thinking because of its own associations
The fascination with the cyborg that is typical of posthuman thinking maybe suggests
a kind of autistic-being-in-the-world; if the alien and the human are not held apart but
actually inform each other, then the hybrid that results could possibly be read in terms
of autism. Equally, the fact that some with the condition prefer objects to people
seems an uncanny echo of the embodied relationship with our environment that
evolution. The ways in which being human only includes a fraction of such evolution,
such thinking asserts, means the state must be assumed to change as the future
develops. Again, this strand again sits well with the idea of a future in which we
taught us.
These are heady ideas, and will be controversial to some, but they are in no
way outlandish or fictional. Rather there is a clear logic to them, from the admittance
that metaphors of autism and the alien abound to the fact that we know our own lives
are integrated into technological and information systems as never before. The
question that might be asked in response to this thinking is: where does this leave the
lives of those with autism? For some, this very enquiry might smack of a humanist
112
concern with a certain idea of ‘life’, but it is not illegitimate, given our current
those who still find themselves misunderstood and subject to prejudice. The answer to
the question does not simply pit the supposed integrity of the lived life against the
through education, the kind of posthuman philosophizing outlined above can have real
effects on those with autism in the ways in which it potentially opens up an idea of an
with the condition might reinforce and perpetuate the all-too-familiar ideas of pity or
loss that lead to isolation and rejection. And, of course, we need to acknowledge that
there are people with autism who have opinions about these matters as well: as
We might express it in this way: because of its difference, autism has the
the ability to offer a critique of those lazy assertions of, and appeals to, a ‘shared
humanity’, to replace that strand of humanist thought that in its totalizing ideologies
created the disabled subject, and to counter it with a radical notion of human
difference and potential. The link between this idea of difference and a reconfigured
idea of the human is clear, as the potential identified here is also a space of
negotiation between our present and our future, a process that faces forward precisely
because it opens up the category of ‘the human.’ If this is what we might learn by
thinking through what it means to consider those with autism as aliens, and by
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acknowledging the integrity of autistic lives, then we could – together - all go a very
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Afterword: Autistic Presence
115
Most of this book was written in the summer of 2010, often during the early morning
when I would get up to work in the hope that I would be able to produce my daily
word target before my son, on his school vacation, himself appeared from his room.
Usually he was up early too, so often the thinking and writing took place with the two
routine, or in responding to his requests for food and drink or to change a DVD. I
have always thought that the predominant issue raised by autism is the sheer fact of its
presence; it is here and will always be so. Such presence is the final yardstick by
which all the various attempts to understand or interpret it, whether made through
generalize about it, and to discuss it in broad terms, it is also essential to recognize
that it is always in personal form, always individual. It cannot be avoided, but rather
Both the American photographer Timothy Archibald and the Australian poet
Les Murray also have sons with autism. In his 2010 collection Echolilia, Archibald
captures his son in a variety of images, all united by his interaction with the world
around him. In ‘Home Made Sunset 2008’, Elijah Archibald lies on the floor,
construction, geometric and precise, but its effect appears to be one of comfort, with
Elijah content in his appreciation of the moment he has created. In its sense of quiet
privacy, the image is also one of normality; this is clearly autistic difference, but it is
also an everyday moment, a small event in the daily business of an autistic life.
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For his part, Murray has a poem entitled ‘It Allows a Portrait in Line Scan at
Fourteen’ in which it is the condition itself, conceived of as a presence and the ‘It’ of
the title, that ‘allows’ Murray’s son, Alexander, to express himself. At times, the
autism is controlling: “It requires rulings,” Murray writes, and “It does not allow
proportion.” “It still runs him around the house,” he observes; but, while running
around the house, Murray’s son is “cooing and laughing”, and though the autism is
never unproblematic for him – “Don’t say word! When he was eight forbade the word
‘autistic’ in his presence” – it also allows him knowledge and insight: “He remembers
all the breeds of fowls,” Murray writes, “and all the counties of Ireland”; “He has
forgotten nothing, and remembers the precise quality of experiences.” In a nice touch
Murray notes that Alexander “climbed all over the dim Freudian psychiatrist who/
told us how autism resulted from ‘refrigerator’ parents” (Murray 1996, 49-50).
a substantial creative imagination. In his poem, the condition is not one entity, nor
sometimes enlightening. But, as with Archibald’s image, the poem is written from a
viewpoint that is prepared to listen to autism, to gauge what it allows, and then to live
with that. Both photograph and poem acknowledge the presence of the condition, and
don’t seek to make it something it is not. For a long time many people with autism
were institutionalized, locked away from a public that could not even begin to
understand them because it never saw them. That is no longer the case; there are now
more autistic people than ever to meet, to spend time with, to help, to learn from, and
to listen to. All these activities are part of everyday life, the normal activities of our
world. Possibly understanding autism and getting beyond the facts through which it is
too often reduced is, finally, simply about realizing that this is the case.
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118
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