Childhood autism Horrible history

Novembro 7, 2015 às 1:00 pm | Publicado em Livros | Deixe um comentário
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Notícia do The Economist de 22 de agosto de 2015.

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The treatment of autistic children in the 20th century was shocking

Neurotribes: The Legacy of Autism and the Future of Neurodiversity. By Steve Silberman. Avery; 544 pages; $29.95. Allen & Unwin; £16.99.

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.

From the print edition: Books and arts

 

 

 

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