Chris Gunter examines a comprehensive history of the science and culture surrounding autism studies.
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
By Steve Silberman
Within two generations, the popular and scientific understanding of autism spectrum disorder (ASD) and related conditions have undergone a massive shift in some parts of the world. We have moved from routine institutionalization (or worse) of people with ASD to an appreciation of a spectrum of social communication.
How did this sea change come about? Journalist Steve Silberman has been writing and commenting on autism for years, notably with a 2001 feature in Wired magazine on ASD rates in California's Silicon Valley. He has compiled his exhaustive research into NeuroTribes to try to answer that question.
Genetic and neurological studies now firmly suggest that 'autism' describes a constellation of behaviours. This is defined in the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5, 2013) as “persistent difficulties in the social use of verbal and nonverbal communication” and “restricted, repetitive patterns of behavior, interests, or activities”. In 2014, the US Centers for Disease Control and Prevention estimated that 1 in 68 US children had ASD. Co-occurring challenges abound — including anxiety and digestive problems — but only about half of people diagnosed with ASD also have intellectual disability. We now recognize that autistic people can have a hugely varying range of impairments and abilities, which can change throughout life.
This recognition has been hard won. Silberman takes us back to the early twentieth century and clinics in Europe, Russia and the United States that first began using the terms autismus or autistic psychopathy (from the Greek word autos, meaning 'self') to describe apparent withdrawal into an inner world.
The clinicians most often credited with discovery are Hans Asperger and Leo Kanner. Asperger's clinic in 1930s Vienna embraced the full range of ASD. But Silberman asserts that to protect his charges from euthanasia by the Nazis, Asperger focused his case reports on gifted children ostracized by their peers, later termed high-functioning. Eventually, these cases would be called Asperger's syndrome; in the DSM-5, controversially, this diagnosis is folded into ASD.
Kanner wrote a 1943 paper about his patients in Baltimore, Maryland, which is generally considered the first description of autism (Nerv. Child 2, 217–250; 1943). He focused on “extreme autistic aloneness” and “an anxiously obsessive desire for the maintenance of sameness”. This restricted view would shape the field for five decades.
With child psychologist Bruno Bettelheim, Kanner did further damage in the 1940s and 1950s by popularizing the unfounded idea that loveless “refrigerator” parenting caused autism. The pair suggested that children with autism be institutionalized 'for their own good'. Silberman provides ample biographical detail on many such personalities in early autism research, as well as Bernard Rimland, who founded the US National Society of Autistic Children (now the Autism Society) in 1965 and pioneered the involvement of parents in support networks and the search for treatments and educational strategies.
As he must, Silberman discusses the disastrous impact of the now-retracted 1998 paper in which UK surgeon Andrew Wakefield (since struck off the medical register) alleged a link between ASD and the measles, mumps and rubella vaccine. Silberman demolishes the study's claims, long dismissed as fraudulent and debunked by massive longitudinal studies.
Instead, rising rates of ASD diagnosis in the past four decades (US prevalence was estimated at 1 in 5,000 in 1975) can be tied to — but not wholly explained by — the use of expanded diagnostic criteria from the 1980s. UK clinician Lorna Wing and her colleagues, whose revisions to the DSM-III were adopted in 1987, fully expected to see a rise in diagnoses, hearkening back to Asperger's 1944 definition of “autistic psychopathy”, in which he described his observations as “not at all rare”. Wing adopted the term autism spectrum, recalling the words of statesman Winston Churchill: “Nature never draws a line without smudging it.”
The rise in diagnoses is also linked to awareness increased by films featuring autistic characters, such as Rain Man (1988), as well as the advent of the Internet and social media, which enabled the formation of support groups and allowed communication in ways that can be easier for people with ASD. As some of the stigma has ebbed, parents have become more willing to seek diagnoses for their children and even themselves.
One of the most powerful talks at the 2015 International Meeting for Autism Research was by John Elder Robison, who has been diagnosed with Asperger's syndrome. He told the room of scientists and clinicians, “The reason diagnostic labels are so important to those of us with autism is that without those labels, we only have the labels we got in the streets, which are hateful.” While we debate diagnostic criteria, we must remember that there are people receiving these labels (and not) who deserve respect, understanding and support.
Fittingly, NeuroTribes ends with the neurodiversity movement that is now emerging. Groups such as the Autism Self Advocacy Network campaign for spending less on finding 'cures' and more on designing appropriate support and accommodation for people with ASD and their families and caregivers.
Any work on ASD will be seen as a triumph by some and a travesty by others; Silberman has opted not to be shy. Great contributions include interviews with prominent scientists and self-advocates. He intersperses these with his own opinion, for example portraying the DSM-III as a way for psychiatrists to link to “Big Pharma”. His affection for detail can get in the way, as in a chapter on the development of radio and electronic bulletin boards. Readers should look elsewhere for a primer on what we do and do not understand of the basic biology of ASD; that is not Silberman's intent.
NeuroTribes is no casual read. The parent of a newly diagnosed child looking for information may be put off by the weight of past horrors on show. But for people in the field, or anyone seeking to understand the interplay between medical science and patient communities, it should be an essential resource. My own copy is already dog-eared and underlined throughout.
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