What’s behind the ‘autism epidemic’?

Unstrange Minds: Remapping the World of Autism, Roy Richard Grinker, Basic Books, 2007; Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social, Majia Holmer Nadesan, Routledge, 2005; Send in the Idiots: Stories From the Other Side of Autism, Kamran Nazeer, Bloomsbury, 2006.

Like Roy Richard Grinker, whose daughter was diagnosed as autistic at around the same time as my son in the early 1990s, at the time I ‘knew little about the condition and knew no-one else who had it’. Autism was then regarded as a rare disorder affecting three children in 10,000. A decade later, the increasing numbers of children with autism are widely described as a crisis and an epidemic, with cases occurring at a rate of 60 per 10,000 births. Grinker, a social anthropologist as well as a parent, observes that the term epidemic ‘implies danger and incites fear’ and wisely cautions that we should ‘step back and take a closer look at our fears about autism’.

Through a comprehensive review of the history and epidemiology of autism, Grinker shows how a greater awareness of autism among parents and professionals, together with a widening concept of autism, have led to a dramatic increase in the recognition of cases, rather than a true increase in numbers. He challenges the conviction among many parents that an epidemic of autism can be readily attributed to toxins and vaccines and regards the search for environmental causes (and cures) as misconceived: ‘If there is no real epidemic, we might just have to admit that no-one is to blame.’ He insists that ‘we cannot find real solutions if we’re basing our ideas on false premises and bad science’.

For Grinker, the increased recognition of autism in Western society is a welcome sign ‘that we are finally seeing and appreciating a kind of human difference that we once turned away from’. With insights derived from his studies in India, South Korea and South Africa (as well as in Europe), he shows how in other cultures autism is only beginning to emerge from being hidden, stigmatised and denigrated.

While Grinker describes the familiar parental struggle to secure appropriate schooling for his daughter even in the USA of today, he readily acknowledges that ‘autism is a terrible, life-long disorder, but it’s a better time than ever to be autistic’. However, when he claims that ‘the prevalence of autism today is a virtue, maybe even a prize’, he never asks whether the current popularity of autism reflects a perverse celebration of themes of alienation and atomisation in contemporary society – for that we need to turn to a sociologist.

Majia Holmer Nadesan, who also has a child with autism, brings a welcome sociological and historical perspective to her thoughtful and thought-provoking survey of current controversies. For her, autism is not so much a discovery of the 1940s that became an epidemic in the 1990s, as a product of the social and cultural circumstances of the late twentieth century. She argues that the ‘classical’ autism described by US psychiatrist Leo Kanner in his landmark 1943 paper emerged as a result of the development of distinctive concepts and institutions of childhood and child psychology over the preceding half-century. In contrast with the current vogue for identifying autistic personalities in history and literature, she insists that autism was ‘unthinkable’ within the diagnostic categories of nineteenth-century psychiatry, at a time when any child presenting such behaviours would have been ‘abandoned, neglected or institutionalised’.

Nadesan considers that the expanding range of autism diagnoses in recent years – with a particular emphasis on cases of ‘higher functioning’ autism or Asperger’s syndrome – can be attributed to the more intensive parental and professional focus on child development fostered by cognitive psychology and to the scope offered to the more able autistic individuals within the wider culture of information technology. (Though Hans Asperger first described cases of his syndrome in Austria in the 1940s, his work did not become widely known in the English-speaking world before the 1980s.) In a perceptive discussion of ‘Asperger’s as cyborgs’, Nadesan notes the way this syndrome has been constructed as ‘the sublimation of humanity by technology, cloaked in the guise of human genius’. She attributes the impact of popular accounts of ‘autistic intelligence’ to ‘the public’s simultaneous fascination and repulsion with a stereotyped and reified form of “autistic genius”’.

Whereas Grinker uncritically welcomes the wider recognition of autism, Nadesan is alert to the danger that, in technically advanced countries in the late twentieth century, ‘we have pathologised people’ who would formerly have been regarded as merely eccentric.

Nadesan develops philosopher Ian Hacking’s theory of autism as a ‘niche disorder’ arising from the interaction of biological and cultural factors in modern society. She challenges the one-sided emphasis on the biological determination of autism evident in both mainstream research and in popular ‘biomedical’ alternative approaches. Emphasising the dynamic interaction of biological and social aspects, Nadesan insists that people with autism cannot be reduced to defective genetic and neurological states. Indeed, it is the recognition that genes, brain and mind are loosely coupled rather than mechanistically determined that offers scope for therapeutic intervention.

Kamran Nazeer, who was diagnosed with autism as a child, is well aware of the difficulties facing even higher functioning adults with autism. Twenty years after leaving his elementary school in New York, he has traced some of his former classmates and now tells their stories.

Craig, whose echolalic childhood phrase provides the title, was a speechwriter for the Democratic Party who became unemployed after George W Bush’s 2004 election victory. After a spell in a juvenile detention centre for a serious assault, Andre lives with his sister, works in computers and uses hand puppets to facilitate social interaction. Randall works as a bicycle courier in Chicago and is now back with his parents after separating from his former partner Mike, a writer. Though Elizabeth committed suicide in 2002 at the age of 26, we hear her story from her parents, Henry and Sheila.

The most enigmatic case is that of the author. Born to Pakistani parents, he has lived in Jeddah, Islamabad and Glasgow, studied philosophy and legal theory and is now a policy adviser in Whitehall. Nazeer writes with intelligence and wit, providing finely observed and deeply sympathetic profiles of each of his former classmates, together with thoughtful reflections on matters such as the art of conversation, the question of genius and the challenges facing the families of people with autism. His account of the cruelty to psychologists of adolescents with high-functioning autism is hilarious. He concludes with a discussion of autism controversies with two of his former teachers, Ira and Rebecca, who are both still engaged in autism education, though his old school has now closed.

Nazeer observes that, with the decline of psychogenic theories and the rise of genetics, there is now ‘a different sense of shame about autism’. He attributes the influence of vaccine theories of causation to a ‘lingering, perhaps renewed, sense of shame about having a child with a developmental disorder’. He finds the quest for environmental explanations ‘terribly sad’ as parents ‘throbbing with guilt and shame’ have pursued ‘whatever external cause they could identify, to exculpate themselves’.

When Ira and Rebecca suggest to Nazeer that he is no longer autistic, his rejoinder is that ‘we all got better, to say it that way’. He insists that it is not ‘simply that we’re all less idiotic than before’ but that ‘we became that way through exposure to the world that lay beyond the horizon of our own selves’. He rejects the ‘notion perpetrated on’ himself and his classmates, ‘that our minds are singular, glowing, remarkable and untouched by others’ – and expectations that people with autism will be socially inept but brilliant with computers. For him, all these preconceptions derive from the same belief – ‘that autistic people are themselves only, self-enclosed and sealed off to the world’. He dismisses the view that people with autism ‘can’t be reached, or shouldn’t be, that self-enclosure is or ought to be permanent’.

In the course of his study Nazeer found ‘something rather different’: ‘Our autism eased, in each case, because of other people, our parents, friends, and our teachers, of course.’ He rejects both ‘credulity and cretinhood’, both the notions that an alienated autistic identity should be celebrated and that autistic children are doomed, without prospect of improvement. He affirms the humanity of people with autism as participants in the networks of human society. ‘This realisation sometimes expands inside me until I feel as if my organs are going to bruise one another.’ Let’s hope that writing this book has reduced his risk of internal injury. As he truly writes, his approach ‘marks a big change compared to how autism is typically thought about’.

For anybody in a quandary over which books to select from the recent profusion of autism-lit titles, here are three excellent choices. If you only have time for one, choose Nazeer’s. It will make you laugh, it will make you cry; above all it will make you think about autism.

Dr Michael Fitzpatrick is author of MMR and Autism: What Parents Need to Know, Routledge, 2004. He will be taking part in a discussion on the theme of ‘Autism Nation’ with Professor Simon Baron Cohen, Marti Leimbach and Kamran Nazeer at the Institute of Contemporary Arts in London at 7pm on Monday 23 April. For more information visit the ICA website here.