- Understanding Autism: Parents, Doctors and the History of a Disorder by Chloe Silverman
Princeton, 360 pp, £24.95, November 2011, ISBN 978 0 691 15046 8
- What Is Madness? by Darian Leader
Hamish Hamilton, 359 pp, £20.00, October 2011, ISBN 978 0 241 14488 6
Descriptions of mental illness depend on what a society regards as a desirable form of exchange. Behaviour is seen as a symptom (or a crime) rather than a foible or a talent when things deemed to be essential – sex, words, money – are being exchanged in a particularly disturbing way, or not being exchanged at all. Sex with children is unequivocally wrong, and possibly an illness, while exchanging sex for money is merely controversial. In the relatively recent past there was something wrong with men exchanging semen with each other, but nothing wrong with men and women exchanging words with God. Now, for some of the authorities, exchanging words with people who are not there, or using words in a way that makes exchange extremely difficult, or not using words at all, as in psychosis, is an illness or at least a problem. Because these are simply agreements between people and not divine fiats or laws of nature – because diagnoses are now understood to be more or less authoritative forms of consensus – our beliefs about these things are up for grabs in a way that they haven’t been before.
For Chloe Silverman, ‘understanding autism’ means understanding how autism has become a diagnostic category and why for some people, in autism advocacy groups for example, it isn’t a pathology at all but just a different way of seeing the world. For Darian Leader, the diagnosis and treatment of madness is something we need to get right, and getting it right means using his preferred version of psychoanalysis. Silverman is interested in how agreement is reached about autism, what it is, and what therapy autistic people need, and who is allowed to contribute to the conversation about these things. What she calls the ‘relentless medicalisation’ of autism has excluded parents and caregivers from adding to the stock of available knowledge. ‘Sociologists of medicine and science,’ she writes, ‘have underscored the importance of social position in the construction of credible witnessing. They have documented how hard it can be to establish lay expert claims to knowledge,’ particularly the claims of the lay experts who are the sufferers themselves (not to mention the claims of all the unqualified people who look after them). Any therapeutic approach that, as Leader puts it, ‘bulldozes away the culture and history of the person it purports to help’ can only be a pernicious oversimplification. Every approach excludes someone from the conversation. Experts on mental health, both the scientists and the non-scientists, have been unduly militant because they all know that they are on shaky ground.
Silverman’s story is about the invention of a diagnostic category, and how it evolves or dissolves, and what makes certain forms of treatment seem preferable to others. Autism is particularly interesting in this regard because – so far at least – it is considered incurable. Which doesn’t mean that the autistic can’t develop or change but that there seem to be significant limits to improvement (in the eyes of the advocacy groups even to use these words is to miss the point). The commonsense view is that we prefer to think about treatments that work, but the idea of what it is for something to work is itself a problem. As Leader points out, psychotic delusions can ‘work’ in the sense that they are ways of constructing a more intelligible or a more pleasurable life, an attempted repair of a shattered world, but there are ways in which they don’t work too. None of the treatments for autism work – and they include now a large spectrum from the dietary to the psychological and the behavioural – in the sense of transforming the autistic child into a ‘normal’ child, or of taking the autism out of the child, or in most of the other senses we have of what a cure might be like or what a treatment should do. As Silverman shows in considerable and illuminating detail, ‘the history of autism has been resolutely experimental’ and the descriptions of the condition and its causes largely speculative. Because ‘autism has been treated alternately as a psychological, neurological, behavioural or genetic disorder, often paralleling trends in medical research and popular interest,’ it has often been more of a barometer of current trends in medical research than a testimony to the efficacy of this research. The advantage of these multiple perspectives is that there are now good descriptions available of the combination of forms of behaviour that make up the diagnosis of autism.
The term ‘autism’ was first used in 1910 by Eugen Bleuler, but initially designated the symptoms of schizophrenia. Autism as a diagnostic category was introduced in 1943 by Leo Kanner, a pioneering child psychiatrist who ran the Behaviour Clinic for Children at Johns Hopkins University in Baltimore. In a now famous article, ‘Autistic Disturbances of Affective Contact’, Kanner described 11 children who had in common ‘an inability to relate themselves in the ordinary way to people and situations from the beginning of life’. Kanner believed that they were suffering from an innate structural deficit in their brains but, as Silverman rightly emphasises, his scrupulously attentive accounts of these children ‘left the possibility open for multiple interpretations’. Kanner noted two other things about the children, both of which, unsurprisingly in retrospect, caused a great deal of controversy: that they all came from ‘highly intelligent families’ that were extremely accomplished and successful, and ‘in the whole group there were very few really warmhearted fathers and mothers.’ Though Kanner later retracted some of these observations, the offensive term ‘refrigerator mother’ was born in the popular press and the blame shifted from the parents to the mothers alone (there was no mention of refrigerator fathers). ‘Most of the patients,’ Kanner wrote,
were exposed from the beginning to parental coldness, obsessiveness, and a mechanical kind of attention to material needs only. They were objects of observation and experiment with an eye on fractional performance rather than with genuine warmth and encouragement. They were kept neatly in refrigerators which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude.
Blaming mothers is easy – an open door. Kanner’s theory was taken up, even though most of these assertions aren’t true – the parents of autistic children for sure aren’t markedly colder than the parents of other children – because it makes autism intelligible as a retreat from an intolerable external reality, and it also makes us all a bit autistic. It’s also in its way pragmatic and optimistic: if autism is genetic, or a brain issue, it would seem that little can be done, and certainly very little by the parents themselves, but if it is a parenting issue then parenting can be improved. Instead of requiring neuroscientists autism could be suitable for psychotherapy. If warmth was required, perhaps warmth could be supplied (‘warmth’ is always a key word in mental health literature, though it is never clear whether this is a concession to common sense or just a filler when the science runs out of explanations). Kanner put autism on the map; he drew attention to children who had previously been, by definition, virtually impossible to engage with. All the controversies that Silverman tracks in her book were inspired by Kanner’s research. By asserting that autism was an innate brain dysfunction, while suggesting that it might in some sense be caused by the cold mechanical caretaking of gifted but remote parents, Kanner set the terms for the debate.
Around the time Kanner published his article Hans Asperger, a doctor at the University Children’s Hospital in Vienna, was doing similar work with another group of children, and also borrowing Bleuler’s term ‘autism’ to describe them. Like Kanner he found that these children were characteristically isolated and self-sufficient, their language often bizarre and idiosyncratic, but he also emphasised their unusual talents and abilities. To Asperger these children, unlike the children Kanner described, seemed full of potential: ‘While their language at times did not seem to be used to communicate,’ as Silverman puts it, paraphrasing one of Asperger’s articles, ‘they could speak well, a few with the vocabulary and pedantic qualities of academics.’ Many of the children he saw were ‘obsessed with topics of special interest to them and could discuss them at length, often past the point of exhaustion on the part of the listener’. This is what is meant when people are described as Aspergery: they are only interested in what they are talking about, never in the people they are talking to. When they are not fascinating they are extremely boring – or, strangely, both at the same time. They live as if people don’t really do things together. Mutuality, reciprocity, the give and take of ordinary affection are unknown to them. And they are unable to see things from other people’s point of view – empathy, too, like warmth and spontaneity, being a ‘positive indicator’ of mental health.
As children the autistic or those thought to be suffering from what was soon called Asperger’s Syndrome either refused exchange with others, or were incapable of it; either their communication was impaired or it was, in some sense, intentionally baffling. Either they were stranded in their neurobiological make-up or their behaviour was an unusually recondite love test to the world. And in the illness-as-metaphor sense, which always allows us to create some interest out of suffering we don’t want to imagine, these conditions seemed particularly pertinent. In the Age of Communication these syndromes, as they were now called, were thought to be particularly telling; in an age of free markets here were people who avoided exchange; at a time when child-rearing and intimate relationships were major cultural preoccupations these were people who couldn’t or wouldn’t participate. Autism, Silverman writes, ‘functioned as a focal point for ideas about motherhood, childhood and development in 20th-century America’. It was difficult not to sympathise with the autistic child, not to mention the parents of autistic children. There was something about autism that everyone could identify with.
In the 1970s and 1980s various new theories about the causes and significant symptoms of autism were broached: that it was ‘brain damage’, that autistic children lacked a ‘theory of mind … the ability to infer mental states in others’, that it was a problem with ‘executive function … the ability to plan and carry out goal-directed actions’, that it was an inability ‘to organise and synthesise information’, that it was the result of what behaviourists called ‘stimulus overselectivity’. The psychoanalysts, partly prompted by Bruno Bettelheim’s famous book The Empty Fortress – Silverman writes with insight about the mixed blessings of Bettelheim’s life and work – went on seeing it as a consequence of disturbed early mothering, more to do with relationships than with biology. The authoritative statement, though not the final word, came from the British child psychiatrist Michael Rutter in a famous article of 1996 that Silverman quotes. ‘Old controversies,’ Rutter observed, ‘over the supposed relationship between autism and schizophrenia, and over its postulated psychogenic causation, have disappeared as the evidence has made it clear that autism is a neurodevelopmental disorder, involving basic cognitive defects, with genetic factors strongly predominant in etiology.’ It was naive and wrong – though not unusual among some devotees of the science of mental health – to believe that evidence could make controversy disappear, or indeed that it would necessarily be a good thing if it did. When it comes to autism – and, indeed, to many other mental illnesses – science has not been able to provide that magical thing, the incontestable consensus. Despite Rutter’s strictures many doctors prefer to talk of a spectrum of autistic conditions, and not of autism per se; as Silverman puts it, there is still a ‘failure to identify reliable biomarkers, consistently recognisable biological indicators, for the disorder’, and a consequent fear that ‘monolithic definitions of autism may in fact hinder the identification of successful therapies.’
Since there has been what Silverman calls a ‘resistance of autism, as a category, to resolve into a clear population in biological terms’, parents have been free to be pluralistic in their approach: they can be ‘behaviourists one moment, biochemists another and homeopaths later’, not worrying too much about the compatibility of rival theories. This only looks like soft relativism, or bad science – or merely the flakiness born of desperation – if you are not the parents of a child diagnosed with autism. Silverman rightly makes us wary of any perspective that ‘leaves little room for complex causation or for treatments that modulate some traits and leave others alone’. Parents can be relied on to know that there is more to their children than their children’s symptoms, and sometimes more to their children’s symptoms than any given professional is able to be interested in.
Because ‘for the foreseeable future,’ as Silverman says, ‘both the facts about autism and the politics of treatment will remain contentious,’ children on the autistic spectrum are ultimately assessed according to their behaviour: whatever the neurobiological preconditions for autism may be it is what these children do that, so far, is the surest sign of what they are suffering from. If autism, whatever else it is, ‘is a disorder of social relationships’, Silverman writes, ‘diagnoses cannot take place without the act of intense, even intimate human interaction.’ She shows, in the most compelling part of her book, that scientific expertise needs the experience and the knowledge of those who love these children as well as those who are just interested in them. Without this, scientific accounts of autism may be misleading, since no one, not even neuroscientists, knows their children better than parents do. The available diagnostic tests, Silverman writes, ‘contribute to the as yet unproven assumption that “autism” is a uniform disorder’ that leads ‘to a diagnosis that many parents experience as a final pronouncement … and in which their own input and questions are often effectively silenced’. Silverman’s remarkable book is a testimony to the difference parents of autistic children have made to the understanding of autism, and it also has things to say about the difference a parent’s understanding can make to understanding many other things that children suffer from. Does it matter if people being treated for so-called mental illnesses – or their parents in the case of autistic children – don’t understand the causal explanation of their condition, or the theories informing their treatment? Are we doomed to live in a world of philosopher kings who for the moment are called neuroscientists?
Science can’t tell us what madness is: it can only report on its discoveries. In deciding what qualifies as madness – what forms of behaviour or exchange are not acceptable – the deciding factor in modern liberal societies has tended to be the question of harm, whether self-harm or harm done to other people. But that simply restates the problem, because we then have to decide what constitutes harm, and why any given individual shouldn’t harm themselves if they want to. (What is a good reason for giving up smoking?) Science can’t decide these things for us. The diagnosis and treatment of mental illness may be a science, but in some sense it is still unclear, as Leader and Silverman both acknowledge, whether there is even such a thing as mental illness, and how, if at all, it is comparable to physical illness. Science can and does contribute to morality, but it can’t tell us what to do; it can just tell us what we should perhaps take into consideration when we are deciding what to do. If madness is a dysfunction of a well-functioning organism what we should be trying to do seems clear, but if it is part of a struggle to have a certain kind of life the therapeutic task is rather different.
Because Leader has a preferred form of treatment for the madness of his title – and he is a lucid guide to the relevant jargon, adept at taking us through the complexities of the Lacanian approach he favours – his book in a sense begins where Silverman’s ends. And he is more wary than she is about those attempts to ‘destigmatise the diagnosis of autism’ by suggesting that ‘Einstein and Newton would have received that diagnosis today.’ However ‘well intentioned’ this is, he believes people’s ‘worth’ should not be ‘reckoned’ in this way, since it involves making an ‘implicit equation between value and social utility’.
He thinks we should listen to the mad in a Lacanian way, and read what Lacan and some other members of the psychoanalytic profession have had to say about psychoses. He argues that we need to ‘realise that people can be mad without going mad, and live perfectly normal lives’, that we shouldn’t equate madness with ‘its visible symptoms’, those that the available drugs take as their ‘targets’, and that madness can be as much an attempted self-cure as an infliction. People are doing something by being mad, and it can be something good. They can be involved, for example, in what Leader calls the ‘proper work’ of building ‘a system of ideas as a response to their experience of collapse’. So to attempt to cure someone of their delusion might be to try and cure them of their cure, something they might be right to resist. Silverman is saying something similar when she writes that autistic self-advocates ‘see the search for a cure as devaluing their own unique abilities’: the fact that some autistic people can think, calculate or remember in ways non-autistic people can’t.
Neither Leader, a practising psychoanalyst, nor Silverman, who teaches in a Science, Technology and Society Programme at Penn State University, in any way underestimates the suffering involved for the diagnosed and their families, or their desire for genuinely useful and illuminating diagnoses. But they both want us to see that, as Leader says, ‘so many of the phenomena of psychosis are not the sign of some deficit but, on the contrary, a path towards creation.’ ‘So many’ rather than ‘all’ is a judicious qualification. Writing about madness often makes the specialists as dogmatic as their patients can be, and Lacanians are not always so circumspect. Lacan, the analyst who did more than anyone else to show us just how driven we are to become what people want us to be, and that what we call madness can be both our resistance to and our complicity with this, has always had schools of followers desperate for his approval. Leader is mercifully free of this servility and the verbal mannerisms of ‘the Master’ that tend to go with it, making him an excellent guide to the accounts of madness in what is often a determinedly recondite system. His book makes us wonder why we need special languages to describe the more daunting human conditions. It has been extremely difficult to make the case for madness without idealising the mad in sometimes rather heartless ways, or objectifying them out of existence. Leader and Silverman, in their different ways, show how this could be done.
As both books make clear, madness has been, if not the nemesis of science, certainly among its greatest challenges. What counts as evidence, and what evidence counts for, is often debatable, especially in the ‘mental health professions’. A problem tends to be called an illness when it has become something that science must cure. And science, with its vested interests and its ostensibly disinterested pursuit of truth, has not always been at its best with mental illness; indeed mental illnesses have tested (and exposed) science and scientists in unusually interesting ways. While the scientists have been asking what’s wrong, and how we can fix it – and more often than we would like to think, how we can make money from it – the ever more vocal patients have been wondering how they can live. These are not necessarily incompatible questions – both the doctor and the patient want to diminish suffering – but they are not the same questions, as Silverman and Leader show. Some of the ‘mad’, perhaps unsurprisingly, have become less and less impressed by the official accounts of their condition and the treatments prescribed, and more insistent about the kind of help they want. Isolating the mad in institutions has revealed that isolation makes people crazy; drug treatments, when they haven’t worked, have revealed just how disorientating it is to be fobbed off rather than listened to properly; and attempts to change their behaviour can, at their worst, be hard to distinguish from what drove them mad in the first place.