Why we should be cautious about celebrating autism
Steve Silberman’s Neurotribes offers a one-sided history of autism.
It is more than a decade since journalist Steve Silberman propounded the theory that ‘assortative mating’ between high-tech individuals explained what he dubbed ‘the geek syndrome’ – the ‘epidemic’ of autism in California’s Silicon Valley. The numerous responses to this thesis, published in Wired magazine, prompted the further explorations into the world of autism that are presented – in more than 500 pages – in his new book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity.
Neurotribes offers a Whiggish history of autism, documenting its emergence from the dark ages of the postwar decades to the contemporary era of enlightened acceptance. From the 1940s to the 1980s, there was little awareness of autism even among professionals. They could not even agree on the label – ‘early onset schizophrenia’, ‘childhood psychosis’, ‘schizoid personality disorder’ were all contenders. Children were institutionalised in grim asylums, parents were blamed as ‘refrigerator’ mothers and as ‘cold and formal’ fathers, autistic adults were simply invisible. Then came Rain Man, for which Dustin Hoffman won an Oscar in 1989 for his depiction of a man with autism and particular mathematical skills. Silberman tells the whole back story of the film and its production, crediting it with making autism ‘recognisable and familiar’. He seems unaware of widespread criticisms of the impact of this film in encouraging a popular overestimation of the prevalence of savant skills and an underestimation of the difficulties resulting from coexisting impairments. He also ignores the flood of sentimental and voyeuristic depictions of autism in the mass media in the wake of the success of Rain Man.
Over the past 20 years, the popularisation of the concept of the autistic spectrum has encouraged wider recognition and diagnosis, and the internet has allowed parents and adult self-advocates to form global networks. The late Oliver Sacks (who contributes a foreword to this book) and other authors have written compelling case histories of individuals with autism – such as the veterinarian Temple Grandin – who have become well-known figures (1).
Silberman tells this story – indeed the many different stories of the key individuals who made this history – with great verve and warmth, weaving a narrative that is sometimes rambling but always fascinating. He follows the vogue for retrospective diagnoses of Asperger’s syndrome, providing colourful accounts of the lives of the chemist Henry Cavendish and the mathematician Paul Dirac (though curiously transplanting his roots from Bristol to Brighton, and those of his wife from Hungary to Belgium). Silberman’s engaging chapter on the autistic features of key figures in the worlds of science-fiction fandom, ham radio and pioneers of artificial intelligence and information technology – from Hugo Gernsback and Nikola Tesla to Lee Felsenstein and Doug Engelbart – clearly reflects his own special interests.
Silberman’s tendency to ‘read history backwards’ is most apparent in the way in which, from the perspective of contemporary notions of ‘neurodiversity’, he pronounces judgement on the two pioneers of the autism diagnosis in the 1940s. He gives a highly positive appraisal of the Viennese paediatrician Hans Asperger and a more critical assessment of the American child psychiatrist Leo Kanner. Asperger is credited with suggesting a relatively wide and inclusive definition of autism, emphasising the ‘autistic intelligence’ of the ‘little professors’ he saw in his clinic. Kanner, by contrast, insisted on a narrow definition of autism, which he considered a rare condition, characterised by impairments of social functioning. Kanner is also condemned for denying or ignoring Asperger’s work (though Georg Frankl, a former colleague of Asperger’s, had joined Kanner’s team), and for making concessions to both eugenics and to the ascendant Freudian tradition in American psychiatry (notoriously in relation to ‘mother-blaming’).
Both Kanner and Asperger lived through grim times at considerable personal cost. Kanner was an early refugee from German anti-Semitism and lost several family members in the Holocaust (as Silberman acknowledges, he helped around 200 Jews, including Frankl, to escape to the US). Working under a Nazi boss, Asperger tried to save children with disabilities from compulsory euthanasia; later in the war, his clinic was bombed and the chief nurse and some patients were killed. It seems harsh to criticise Kanner for resorting to eugenic arguments (then conventional opinion in medical circles) when he was obliged – in 1942 – to write an article for the American Journal of Psychiatry in opposition to a proposal – implicitly endorsed by the editors – to introduce euthanasia for handicapped children in the US. It is true that some of his statements encouraged ‘mother blaming’, but he was always ambivalent about the neo-Freudian school and later repudiated these theories. It also seems that, whereas Asperger was soft-spoken and self-effacing, Kanner was ambitious, conceited and condescending towards his patients (and their parents) – but these are common enough traits in the medical profession.
For Silberman, Asperger’s tendency to ‘accentuate the positive’, his emphasis on ‘difference’ rather than ‘deficit’, paved the way – following the popularisation of his work by the pioneering British autism expert (and parent campaigner) Lorna Wing in the 1980s, when it first became available in English – for the modern understanding of autism. Wing’s concept of the ‘autistic spectrum’, including both individuals with severe learning disabilities and those with above average intellectual capacities, endorsed by medical authorities on both sides of the Atlantic, encouraged a steady increase in diagnoses, at first among children, and, increasingly, among adults. (It is striking that Silberman fails to mention Wing’s other major contribution – the concept of a ‘triad of impairments’ as the basis of diagnosis.)
Silberman celebrates the emergence over the past two decades of groups of individuals who embrace autism as an identity rather than regarding it as a disorder. Facilitated by the internet, groups such as the Autism Network International and the Autism Self Advocacy Network embrace a ‘social model’ of disability, and reject traditional medical concepts such as ‘disorder’, ‘disease’ or ‘condition’. These groups have, for the first time, provided an experience of collectivity and a collective voice for people with autism. They have proved particularly effective in challenging pejorative and stigmatising depictions of people with autism by some autism charities and organisations promoting quack cures and therapies.
Yet the concepts of ‘neurodiverse’ and ‘neurotypical’ are problematic. As the sociologist (and parent) Majia Holmer Nadesan observes, the notion that people with autism share a common biological (neurological and genetic) essence, some sort of ‘hard-wiring’ of the brain that is fundamentally different from those who are not autistic, is both affirmative and divisive (2). It allows people with autism to celebrate their distinctive skills, aptitudes and accomplishments. But it also assumes the existence of a divergence between autistic and non-autistic people at a fundamental biological level – and that everybody in each group shares this distinct biological state. Not only is the scientific basis for this divergence obscure, it has the effect of reducing differences expressed at the level of mind (where they are susceptible to social influences) to the level of the brain (where they are, implicitly, fixed). Furthermore, notwithstanding fashionable celebrations of autistic genius, people with autism know that their difference is ultimately devalued in relation to privileged ‘neurotypical’ normality.
The shift in the centre of gravity in the world of autism from children to adults, and from those with severe learning disabilities to those of high cognitive ability, has inevitably provoked tensions. To some it seems that neurodiversity activists want to have their cake (embracing diagnosis to legitimise claims for special consideration, support and services) and eat it (rejecting diagnosis as medicalising and discriminatory). Neurodiversity groups provide a voice for people with autism, but for whom do they speak? Groups such as the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) have gone to impressive lengths to create democratic processes for decision-making, but these inevitably still exclude many people with autism and associated learning disabilities. Activists have a point when they reject a simplistic distinction between low- and high-functioning autistics, yet it is inescapably the case that a substantial proportion of people with autism are incapable of the level of communication required to participate in these processes even with the most advanced technological aids. Activists also have a point in questioning claims of parents to speak on behalf of their (adult) offspring: clearly there are often conflicts of interest within families. But the question remains: who is entitled to speak on behalf of those unable to speak for themselves?
In relation to research, Silberman endorses an increasingly popular distinction between basic scientific research and research into practical interventions likely to have immediate practical benefits. Research in the fields of genetics and neuroscience is disparaged, partly because earlier promises of rapidly transformative effects have not been fulfilled, and partly because biomedical studies are linked to the quest to find ‘a cause and a cure’ (or even to proposals for eugenic ‘preventive’ interventions). But activists also increasingly demand the diversion of resources into investigations of educational, psychological and social interventions that may ameliorate some of the day-to-day difficulties experienced by people with autism and their families.
But this argument is based on a false counterposition. Investigating the pathways linking genes and central-nervous-system pathways and neurotransmitter systems involved in particular patterns of behaviour may open the way towards treatments for many clinical features associated with autism. For example, many people with autism experience problems of anxiety and depression, obsessional and compulsive behaviours; others manifest self-injurious or challenging behaviour; many have epileptic fits. Scientific studies may yield insights into problems of learning disabilities and even into some of the difficulties of social interaction experienced by people with autism. No doubt we need more research into many of the practical interventions currently in use for people with autism, from medications to teaching techniques to behavioural programmes – but not at the expense of basic biomedical research which may yield more substantial, longer-term benefits.
Neurotribes opens and closes with sketches of two individuals with autism who in middle age have come to enjoy fulfilling lives in supportive communities. Both are celebrities of a sort in the world of autism by virtue of the status of their parents as pioneering figures – Jessy is the daughter of Clara Claiborne Park, who wrote two famous books about her experience of parenthood, and Mark is the son of Bernard Rimland, a leading campaigner against parent-blaming theories in the US. These are heartwarming stories and indeed reflect remarkable social progress.
But the wider picture is more complex and gives no grounds for complacency. In their investigation of the situation of 30 adult autistics, Jane Johnson and Anne Van Rensselaer found that none was living independently, and many experienced enduring problems of self-injury and challenging behaviour. In Britain, the scandal of Winterbourne View, a special-assessment unit in which people with autism and learning disabilities suffered a regime of neglect and abuse, was exposed in a BBC Panorama report in May 2011. Three years after its closure, it was revealed that, far from achieving the target of finding appropriate community placements for all individuals in such institutions, their numbers had increased. Though the government report into the events at Winterbourne View noted ‘deep concerns’ about the overuse of medicines in people with learning disabilities and autism, a major study published in September 2015 confirmed that more than a quarter of adults with learning difficulties had been prescribed antipsychotics, often with no obvious clinical justification other than to ‘manage challenging behaviour, despite lack of evidence and the risk of adverse side effects’.
Neurotribes: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman, is published by Avery Publishing Group. (Order this book from Amazon(UK))
(1) An Anthropologist on Mars, by Oliver Sacks, Picador, 1995
(2) Constructing Autism: Unravelling the Truth and Understanding the Social, by Majia Holmer Nadeson, Routledge, 2005
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