Thirteen years ago, as the journalist Steve Silberman was telling a friend that he had recently met two tech entrepreneurs who had autistic children, a stranger interrupted him. “I’m a special education teacher. Do you realise what’s going on? There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children,” she said. These “chilling” words inspired him to start investigating.
Even beyond Silicon Valley, rates of autism seem to have risen significantly. Between 1990 and 2000 the number of cases of autism in the UK registered for disability payments with the Family Fund increased 22 per cent a year. So, what is going on? Is autism caused by modern contaminants (vaccinations, exposure to heavy metals, pollution and food chemicals have all been suggested)? Or could it be, as some experts maintain, that the diagnostic criteria have widened and more people are seeking help?
To answer this, Silberman tries to trace the roots of our understanding of autism. This brings him to the intriguing story of two men, working on opposites sides of the Atlantic during one of the most destructive periods in human history. The first is Hans Asperger, a “soft-spoken paediatrician” at a progressive Austrian clinic in the 1930s and 1940s, who took a “special [interest] in gifted, sensitive children who had been cast out by their peers”. His patients were clumsy and socially awkward and shared a preoccupation with rules and schedules. Some were profoundly disabled; others possessed precocious abilities – but even these children struggled with some simple tasks, such as tying shoelaces. He described their condition as “autistic psychopathy” and saw his role as nurturing their “autistic intelligence” while helping them to overcome their special challenges.
When in 1939 the Nazi regime began a euthanasia programme that led to the murder of over 200,000 disabled children and adults, Asperger battled to protect his “little professors”. He was arrested and released repeatedly, but many of his colleagues were killed or exiled, and in 1944 his clinic was reduced to rubble by an Allied bomb. Many of Asperger’s ideas were buried with it.
It is often seen as coincidence that in 1943 Leo Kanner, an ambitious physician born in Austria-Hungary who had emigrated to the US, published his discovery of a “unique” and “unreported” condition known as “extreme autistic aloneness”. In fact, Silberman has uncovered a link between the two men: in the late 1930s Kanner began working with Georg Frankl, a psychiatrist he had helped to escape from Austria. Until his exile, Frankl had worked as Asperger’s chief diagnostician. But Kanner was determined to make his mark in medical history and both Frankl and Asperger were written out of his groundbreaking discovery. This act of academic dishonesty might not have been so important, were it not for Kanner’s insistence that autism is rare and affects only severely disabled children – with the result that for decades many autistic people escaped diagnosis. The rising statistics have followed a rewidening of this definition in the 1990s. Kanner’s work derailed our idea of autism in another crucial respect. He showed little interest in his patients’ unusual skills, seeing autism as something purely negative. Consequently, for decades, the focus of much of the research has been on hunting for a cure, a quest that has often had deeply damaging consequences.
Silberman is a skilled storyteller who uncovers the dark and complex history of autism through those who have shaped it: not just the researchers and scientists, but also the parents-turned-campaigners and autistic people themselves. It doesn’t make for an easy read, because the subject matter is so painful. Take Ole Ivar Løvaas, who used electric shocks to “normalise” children with autism. Electrocute a pair of remote, solitary twins systematically and regularly enough and they can be taught to hug their parents, he learned. Desperate families signed up for his scheme, perhaps encouraged by credulous journalists: in 1965 Life magazine ran a profile of Løvaas, flagging up his technique as “a surprising, shocking treatment” that “helps far-gone mental cripples”.
It is equally heartbreaking to read Temple Grandin, an animal sciences professor with autism, describing her 1950s childhood: “If adults spoke directly to me I could understand everything they said, but I could not get my words out.” How many non-verbal autistic children have been written off as stupid or worse, simply because of a communication breakdown?
Silberman researches with scientific rigour but is a campaigner at heart: he is an advocate for neurodiversity, a movement that argues that autism is a naturally occurring cognitive difference with its own strengths and value. Neurotribes is littered with examples of individuals with awe-inspiring skills: exceptional artists and musicians, a two-year-old who has learned the names of every US president and vice-president, a set of twins who can mentally calculate six-digit prime numbers. Certain traits common among autistic people – focus, attention to detail, obsessive interests, an affinity to rules and patterns – may be particularly suited to understanding modern technology. Internet culture has also offered new ways for people with autism to communicate and organise, and helped the formation of campaign groups. Perhaps the high rate of autism in Silicon Valley isn’t so puzzling, or even so “terrible”.
After decades of misguided attempts to “cure” people with autism, neurodiversity champions want to celebrate their difference and refocus on supporting them better, a principle that extends from the most disabled to the highest-functioning. Depressingly, this is a perspective that Asperger expressed more than 70 years ago.
The Australian activist Judy Singer, who first coined the term “neurodiversity”, has said that she hopes to mobilise a movement akin to feminism or gay rights. This is a revolution in its infancy but Silberman’s is a powerful voice: Neurotribes offers keen insight into the inherited privilege of having a “neurotypical” brain – society, after all, is organised around such minds – as well as a new awareness of expansive inner worlds to which most of us will never have access. Yet the most potent rallying cry comes from Anne Carpenter, a campaigner who has autism: “If normal is being selfish, being dishonest, killing, having guns and waging war, I’m not having any of it.”
Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently is published by Allen & Unwin, 534pp, £16.99
This article appears in the 02 Sep 2015 issue of the New Statesman, Pope of the masses