Call a kid a zebra

Daniel Smith

  • In a Different Key: The Story of Autism by John Donvan and Caren Zucker
    Allen Lane, 670 pp, £25.00, January 2016, ISBN 978 1 84614 566 7
  • NeuroTribes: The Legacy of Autism and How to Think Smarter about People Who Think Differently by Steve Silberman
    Allen and Unwin, 534 pp, £9.99, February 2016, ISBN 978 1 76011 364 3

As psychiatric concepts go, autism has proved uncommonly susceptible to interpretation, appropriation and expansion. And few people have done as much to influence the world’s understanding of autism as Lorna Wing, who died in 2014. For decades a member of the Institute of Psychiatry at King’s College London, Wing was a pioneering clinician, epidemiologist and researcher. Her only daughter, Susie, was autistic, and in 1962 Wing co-founded the world’s first autism advocacy organisation. In 1965 she helped open the world’s first school for autistic children (John Lennon was a major donor). She wrote the first, and still definitive, guide for parents of autistic children. But she is best remembered for the term she coined in 1981, in the journal Psychological Science: Asperger’s syndrome. As she acknowledged much later, in an essay called ‘Reflections on Opening Pandora’s Box’, the consequences far exceeded anything she’d imagined.

Asperger’s syndrome is a high-functioning variant of autism, in which the traits of the condition coexist with normal-to-high verbal skills and intelligence. Wing chose the name in homage to Hans Asperger, an Austrian paediatrician whose work in the 1930s and 1940s with a group of socially awkward, oddly precocious, rule-obsessed children – his ‘little professors’, Asperger called them – remained obscure until she and her colleagues recovered it. Until then there was almost no notion that a high-functioning variant of autism existed. Most experts considered autism to be rare, homogeneous and totally debilitating: a form of psychosis that afflicted young children, sealing them off permanently from normal, loving relations with others and the world. Autism was seen as outside the realm of regular human functioning. When Oliver Sacks read Temple Grandin’s 1986 memoir, Emergence: Labelled Autistic, he thought Grandin’s co-author, Margaret Scariano, must have written it. ‘The autistic mind, it was supposed at that time, was incapable of self-understanding and understanding others and therefore of authentic introspection and retrospection,’ Sacks wrote. ‘How could an autistic person write an autobiography? It seemed a contradiction in terms.’ As late as 2001, the epidemiologist Walter Spitzer could still describe autism as ‘a terminal illness … a dead soul in a live body’.

Wing was convinced that this monolithic notion of autism was both incorrect and, given how many people it blocked from receiving social and educational services, destructive. It wasn’t that the profound, ‘classic’ type of autism didn’t exist: her own daughter was severely disabled by her condition; she spent most of her life in a residential home, and died at the age of 49 in 2005, after her compulsion to drink excessive amounts of fluids diluted her blood and stopped her heart. But autism like Susie’s, Wing had determined, represented only a sliver of what by the late 1970s she had begun to call the ‘autism continuum’, and would later call, to far greater effect, the ‘autism spectrum’.

Wing argued that a ‘triad of impairments’ – in social interaction, social communication and social imagination – characterised all manifestations of autism. But the framework was almost infinitely flexible. Within it, a universe of autistic traits – from screaming to mutism, from an obsession with the parts of objects to switching lights on and off, from excessive formality to banging one’s head against a wall – appeared in a multitude of combinations and levels of intensity, ‘right up to the borderline of normality’. She introduced Asperger’s in order to demonstrate that autism was far more elastic than people had thought. Her goal wasn’t to enshrine yet another discrete category of disorder; so far as autism was concerned, she didn’t much believe in discrete categories: it was to promote a more inclusive, heterogeneous, humane understanding of the condition in general.

To flourish, psychiatric diagnoses need both to conform to reality and to be useful. Asperger’s quickly showed itself to be useful. The concept ‘filled a need’, as John Donvan and Caren Zucker write in In a Different Key. Donvan and Zucker are journalists at the American television network ABC; both have autistic family members. Asperger’s, they write, ‘fitted people’ whom clinicians were seeing in practices, and patients and their families found Asperger’s less frightening to talk about than autism. Where the label matched, there was little reason for a clinician not to use it.

The more clinicians used the label, the more pressure the diagnostic authorities were under to recognise it. That the clinicians and the authorities were often the same people lent momentum to the process. The first international conference on Asperger’s didn’t take place until 1988, but by then, under Wing’s guidance, the American Psychiatric Association had already changed the definition of autism in its Diagnostic and Statistical Manual, softening and expanding the checklist items and introducing a sub-threshold diagnosis, whose name, ‘Pervasive Developmental Disorder – Not Otherwise Specified’, sounded like psychiatric self-parody. In 1990, Wing prevailed on the World Health Organisation to include Asperger’s in its International Classification of Diseases. The APA had little choice but to follow suit. The psychiatrists in charge of the fourth edition of the DSM, which was published in 1994, considered proposals for 94 new diagnoses. Two made the cut. The first was Bipolar II Disorder. The second was Asperger’s.

It was at this point that Pandora’s box truly burst open. Steve Silberman, the author of NeuroTribes, describes DSM-IV as the diagnostic equivalent of Michael Jackson’s Thriller: an unprecedented international hit. The manual and its many tie-ins – including study guides, casebooks, videotapes and software – earned $100 million for the American Psychiatric Association. This once obscure 42-year-old psychiatric manual inserted itself, as Silberman writes, into nearly every facet of American life: ‘classrooms, courtrooms, community clinics, research labs, congressional hearings, pharma stockholders’ meetings, social service agencies and guidance counsellors’ offices’. For autism in particular, this meant that the ‘clinical infrastructure’ of the condition was transformed ‘from a channel for optional reporting of isolated cases to a network for active surveillance of the general population’. The first autism prevalence study, published by the psychologist Victor Lotter in 1964, suggested (with scrupulous social-scientific disclaimers) that the condition affected 4.5 out of every 10,000 children. In 1999 a widely disseminated report by California’s Department of Developmental Services raised that number to 60 out of every 10,000 children. In 2004, the US Centers for Disease Control and Prevention published an alert for paediatricians which claimed that autism affected one out of every 166 American children. By 2007 it had raised that number to 1 in 110. By then, of course, the figures were so high that a few dozen kids more or less hardly mattered; everyone was already in a panic.

Both of these books spend a great deal of time on the recent autism ‘epidemic’. In all likelihood, neither would have been written – or at least not published by a mainstream house – had autism not entered the public consciousness in such a spectacular and alarming way. This isn’t to say that the history of autism doesn’t hold fascinations independent of recent events. Both Silberman and Donvan and Zucker have a lot of fun describing the lives of autistic people before autism was a concept, like the 18th-century ‘natural fool’ Hugh Blair of Borgue, a Scottish laird who filled his bedroom with twigs and feathers and liked to dine with cats, whose paws he licked clean. Silberman includes a chapter about Henry Cavendish, a pathologically shy scientific polymath whose many breakthroughs include the 1766 discovery of hydrogen; ‘The way to talk to Cavendish is never to look at him,’ the astronomer Francis Wollaston was to say of him.

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