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The Legacy of Autism and the Future of Neurodiversity
EVERYTHING about autism, which is among the most common and the most slippery of mental conditions, is contested. The American Psychiatric Association, which determines what ailments American insurance companies will pay to treat, classifies it as a disorder. Many parents of autistic children are desperately searching for a cure, and find themselves easy prey for people who overpromise, selling remedies that have no scientific basis. Plenty of other people think that autism - which is characterised, among other things, by an inward focus that makes it hard to abide by the conventions of social behaviour - is not a disorder at all, and therefore has no need of a cure. America's Centres for Disease Control and Prevention thinks that one in 68 children in the country have at least a touch of autism, which if true means there are more autistic Americans than Jewish ones. This too is contested.
Steve Silberman's interest in autism was prompted more than a decade ago by his work in Silicon Valley for Wired magazine. He kept coming across software engineers with autistic children and, in an article entitled 'The Geek Syndrome', speculated whether this was a coincidence. Work by Simon Baron-Cohen at Cambridge University suggests it is not. Mr Baron-Cohen's team has shown that people who have engineers for grandfathers are far more likely to be diagnosed with autism. In 'Neurotribes' Mr Silberman goes further. He traces the prehistory of autism, which he argues persuasively was around long before it was given a name in the 1940s, and explains how a condition that now seems common is the product of ego-driven scientists and of the unusual circumstances in which they worked.
The book begins on Clapham Common, in south London, in the 18th century with the perambulations of Henry Cavendish, an aristocratic scientist obsessed (in the proper sense) with measurement. Cavendish took the same route around the common at the same time every night; he ate the same meal every day; wore the same clothes, insisting that his tailor replicate them when they wore out. He avoided eye contact with people. Colleagues at the Royal Society found that they could engage Cavendish in conversation only if they avoided addressing him directly. Yet he was only turned inward in a cocktail-party sense: he endowed a library which scholars were free to borrow from (so long as they did not talk to him) and shared his scientific discoveries with anyone who was interested. Among them were hydrogen, his 'inflammable air', and an accurate estimate of the Earth's mass, which he calculated on his own at home using instruments of his own design.
Cavendish died 130 years before autism was recognised, but his biography suggests he would have been a good candidate for diagnosis. The same goes for Nikola Tesla, who could not sit comfortably at a breakfast table without calculating the precise volume of the coffee cups on it, or for Paul Dirac, whose work predicted the existence of antimatter. Faced with some marital tension over his tendency to ignore his wife (and everybody else, really), Dirac constructed a spreadsheet where he could insert her queries and make sure he answered them properly, an arrangement that seems to have worked rather well for the Diracs.
Yet for all its current associations with outstanding brains, autism was first identified as a pathological state. Before it got its own label, the condition was referred to as childhood schizophrenia. At the core of 'Neurotribes' is an explanation of how autism emerged as the product of conflicts between psychiatrists anxious for career advancement, as played out against the backdrop of the Holocaust. The chief protagonists in this story are Hans Asperger, he of the syndrome, and Leo Kanner, who is widely credited with the invention of autism in a paper published in 1943.
Asperger's syndrome, which has been dropped from the latest version of the Diagnostic and Statistical Manual, the textbook of American psychiatry, has been criticised for its focus on brilliant oddballs and also for its basis in a small number of observed cases. Yet Mr Silberman shows that Asperger, who was working in Nazi-controlled Austria, deliberately played up the brilliance of his patients in the hope of saving them from murder, and that his work was in fact based on the study of a large number of children who were less obviously gifted. German eugenicists, inspired by work in America, referred to such children as 'useless eaters' and said the kindest thing would be to kill them. Asperger lost this argument, but continued his work in a place that made it impossible. One haunting image in the book is of his head nurse buried alive in Vienna by an Allied bomb, her arms wrapped protectively around a young patient.
Cold parents, autistic children
Kanner would surely have known of this work, done by a fellow German-speaker, but chose to ignore it. The Nazis dragged Kanner's 70-year-old Jewish mother to a gas chamber and scattered the rest of his family. After a spell working in a primitive asylum in South Dakota, he fetched up in Baltimore, where autism was born. Kanner was so keen to make a brilliant breakthrough that he insisted that his discovery was new and rare, when it was neither. That bit of vanity might have been more forgivable had he not also speculated, on flimsy evidence, that the parents of autistic children were unusually cold. Time magazine ran a story headlined 'Frosted Children' about these 'Diaper-Age Schizoids'. The slur on refrigerator mothers took decades to fade.
Much of the subsequent history of autism has been about recovering from Kanner's mistakes. In his defence, Kanner never used a cattle prod, unlike some other doctors trying to treat autistic children. Perhaps the grimmest case Mr Silberman cites is of a child who would not stop crying being subjected to electroconvulsive therapy, after which he never spoke again. This sort of stuff is, thankfully, now largely forbidden. But most treatments for autism still inhabit the realm of chelation, supplements, strange diets and other junky science.
If 'Neurotribes' has a shortcoming, it is a minor one. By focusing on some of the most interesting cases, Mr Silberman says little about autistic people with severe learning difficulties who will probably require lifelong care. It may be that in a generation the diagnosis thrashed out by Asperger, Kanner and their heirs will splinter anew into lots of separate syndromes, and the notion of an autism spectrum, which is currently used to make sense of a situation where people with very different characteristics are given the same diagnosis, will fade. Whatever the future of autism, though, Mr Silberman has surely written the definitive book about its past.
THE CENTERS FOR Disease Control and Prevention estimates that one in 68 children in the US are on the autism spectrum, a number that stands in staggering contrast to a 1970 study that put the figure at one in 14,200. Some people believe we're in the middle of an autism epidemic. But autism has always been part of the human experience, as journalist (and WIRED contributor) Steve Silberman shows in his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. It's only recently, he argues, that we have become properly aware of it. We spoke to Silberman about how the modern world came to recognize autistic people and how autistic people helped shape the modern world.
WIRED: In your book you write about Austrian pediatrician Hans Asperger, who did early work on autism in the 1930s. Why is he so important?
SILBERMAN: The more that I discovered about Asperger's conception of autism, the more it struck me as incredibly prescient. He saw autistic people as a subset of humanity that had accelerated the evolution of science and technology. They were a hidden thread in the weave of culture. They had always been here. Asperger conceived of autism as a condition that lasted from birth to death. It was not just a childhood disorder.
And yet he didn't get credit for discovering autism. This guy Leo Kanner, who wrote a paper that came out in 1943 in English, got nearly all the credit for discovering it, and Asperger was reduced to a footnote.
How did Kanner's and Asperger's concepts of autism differ?
Kanner's conception of autism was much more limited - he saw it as a rare form of childhood psychosis. Eventually, by 1948, he had decided it was caused by bad parenting - refrigerator mothers.
That had huge effects on the history of autism. Autistic children were dumped in state institutions. They did very badly, and that became what people thought was the natural course of autism. Being diagnosed with autism was considered a fate worse than death. Autistic people became invisible - not only because the kids were in institutions but also because the parents were being blamed for having caused the disorder.
So Kanner's rigid definition of autism helped create the impression it was extremely rare?
Yes. And it became a self-fulfilling prophecy: Kanner once bragged he turned away from his office nine out of 10 children who were referred to him as autistic by other clinicians, without giving them an autism diagnosis. Now you have a whole infrastructure of clinicians who are qualified to diagnose autism. Teachers know what to look for. Parents know what to look for. Everybody's looking at young children to see if they're autistic or not. Whereas back then, all you had was Leo Kanner's office.
So how did the rediscovery of Hans Asperger - and the naming of Asperger's syndrome in his honor - come about?
In the 1970s, a cognitive psychologist in England named Lorna Wing and her research assistant, Judith Gould, went out to do something that should have been done 30 years earlier - they looked at autism in the general population. They pounded the pavement in this London suburb called Camberwell, looking for autistic kids. Basically, they found that there was a broad and diverse and colorful range of presentations of autism and autistic traits in the kids. Kanner's definition was obviously too narrow, so they decided to throw it out.
Then Wing read a paper citing Asperger and said, 'What is this other paper?' Her husband spoke German, so he translated for her, and she said, 'This is it. This is what we're seeing in Camberwell.' So what they did was quietly work with the American Psychiatric Association to change the diagnosis to reflect the broad and diverse reality of autism.
When you see that history laid out, it's no surprise that the estimates of autism rates went up in the 1990s. They now included conditions on the autism spectrum, like Asperger's and 'Pervasive Development Disorder Not Otherwise Specified.' Why did so many people mistake a change of diagnosis for an 'autism epidemic'?
It was really a science communication issue. The people who knew what was going on, like Lorna Wing, were this tiny little circle of experts who were all talking to each other in scientific journals.
Once the diagnoses started going up, the really gripping stories were 'Oh, there's an autism cluster in this polluted town in Massachusetts.' 20/20 started claiming the town was having an autism epidemic. Once epidemiologists went into the town, they saw, well, no, there was nothing like that going on. It was likely just that more kids were getting the Pervasive Development Disorder Not Otherwise Specified diagnosis, which was still new. But once it turned out to be a more complicated situation, the networks would not retract their stories.
You write about how the iPad is just the latest in a long string of technologies that have helped autistic people connect with others - likely starting with ham radio in the early 1900s.
They could use the equipment to communicate. They didn't even have to talk - they could use Morse code. So they could socialize in a way that was comfortable for them.
The iPad turned out to be a boon, because specialized communication devices for autistic children were always incredibly expensive and inflexible. The iPad comes along and it can be that communication device.
How are autistic people using iPads?
Many autistic kids are more comfortable with icons than with language. They press an icon on the screen and the iPad will talk for them. It's an example of how you can improve the quality of people's lives by providing them with new avenues for communication.
As autistic people gain the ability to speak for themselves, many of them are calling for thinking about autism as one dimension of what they call neurodiversity. What does that term mean?
One way to understand it is to think of human operating systems. Just because a computer is not running Windows does not mean it's broken. It's doing things in different ways. Autistic people are bad at reading social signals but good at detecting flaws in visual patterns. They have a hard time coping with surprise, but they're good at pursuing a personal interest with great focus and intensity. So instead of diseases and cures and causations, we should think of autism as a different way of being that deserves respect and accommodation in society.
But what about someone who is nonverbal and is violently banging their head against a filing cabinet?
Instead of thinking of someone who can't talk as a hopeless case, neurodiversity would say, 'Let's look for ways to help them communicate.' It turns out many, many autistic people who are nonverbal are incredibly intelligent. But they need some technological help to articulate their thoughts.
If we're able to improve communication, we might discover that the kid is not hitting herself because she has autism. Maybe the hum of the fluorescent light is driving her crazy. Unless you strive to open a channel of communication with the kid, you'll never understand.
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