Autism

Stuart Murray

• Editore: Routledge
• Anno: 2012
• ISBN:
  9781136652189
• Edizione: 1
• Argomento: Sciences sociales
• Categoria: Sociologie

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.

The Facts

1 What we know … or Don't

DOI: 10.4324/9780203805992-1

We know more about autism now than at any point in history. We know that it is a neurodevelopmental condition, which is almost certainly biogenetic in origin, and that it affects the ways in which information is processed in the brain. We know that, whatever the debates surrounding ideas of treatment and cure, it is a lifelong 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 experiences of the world. Equally, despite advances in research on genetics, we have 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 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 healthcare 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 all, often referred to as a ‘condition,’ frequently a ‘disorder,’ and sometimes a ‘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 make-up, 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 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.

And yet we need to juxtapose our faith in the competency of medical 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 autism, medical thinking is necessarily speculative, that it creates narratives of 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 hard questions about what the ‘facts’ of autism really are.

2 The Body, the Brain, and the Person Biology, Neurology, and Self

DOI: 10.4324/9780203805992-2

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 opportunities provided by functional magnetic resonance imagery (fMRI) to follow the workings of the brain as it is engaged in a task or problem solving, have allowed 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 differently across a range of individuals.

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

Figure 1.1 Neuroendocrine cells, the pathways of which are thought to function differently in the autistic brain © S. Schuller/Wellcome Images

shaped to those of individuals without autism. In the two to three 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 cerebellum, and a noticeable increase in connections between brain neurons (called dendrites). Some young children with autism have what is termed an ‘overgrowth’ of white and gray matter in the brain’s frontal lobes, although this rate of growth, especially of white matter, then seems to fall away as they grow up. Given that gray 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 Journal of Neuroscience, in which scientists at King’s College in London outlined their development of a brain scanning technique that could, by 2012, provide a screening process that will aid in the processes of diagnosis (Ecker et al. 2010; Rose 2010). The scan works by providing images of thousands of brain regions, as opposed to individual areas, increasing the chances of developing a holistic sense of the brains of those with autism.

All of this neurobiological research, and accompanying work done on 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 complexities of autism such evidence is most usefully positioned. In thinking about the origins of autism, it is better to conceive of a maze to be negotiated than of a situation where X might mark the spot in terms of causation, and as such the evidence supplied by neurobiological and gene-based research still needs to be inserted in the 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 population), or being able to identify certain gene combinations as potential ‘risk 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.

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 relation to a sense of personhood or self. Increasingly, we have grown used to the 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 conversion of statistical information, we understand them in terms of the way that 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/her autism in some way. I will outline the history of the development of medical thought about autism fully in Part II, 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 one. Highlighting the issue of connectivity in brain cells is an obvious part of necessary neurobiological research, but its emphasis on ‘connections’ works to reinforce some common ideas about autism that are in fact cultural in origin; that it can be conceived of in terms of ‘processes’ or ‘wiring,’ for example, or that the autistic brain is like a computer’s hard drive. The flashing colors of MRI scans further such links of course, appearing as a seemingly literal manifestation of the approach 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 ways that may not have been anticipated.

It is in thinking through the consequences of this for the person with autism that we might most profitably understand the 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 condition. Thinking of the autistic brain as some kind of computer provides a shorthand to understanding certain elements of neurological connectivity, but it also arguably serves to perpetuate a number of the common stereotypes of people with 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 III 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 obviously a fact, but in a medicalized arena in which the condition is regularly discussed in terms of being an ‘abnormality,’ or dominated by the idea that it constitutes a ‘deficit,’ it can lose the status it should rightly occupy.

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

Figure 1.2 Further research into the structure of DNA is expected to provide more detail as to the nature of autism © Wellcome Images

to people, to make it into an object of enquiry. Of course this is the way that medicine necessarily works, but I think that, because we do know that autism is intimately connected to the very foundations of 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 obviously a social individual—family and community member, employee and workmate—and a potential danger of the abstraction of the condition produced by 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 encountered in a social situation—family, school, college, or work—than in the rarefied atmosphere of a research laboratory.

Medical conceptions of autism also necessarily project the condition into an 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 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 ph...