The Legacy of Autism and the Future of Neurodiversity
By Steve Silberman
http://www.nytimes.com/2015/08/23/books ... below&_r=0
The history of science is studded with stories of simultaneous discovery, in which two imaginative souls (or more!) turn out to have been digging tunnels to the same unspoiled destination. The most fabled example is calculus, developed independently in two different countries by Isaac Newton and Gottfried Wilhelm von Leibniz, but the list stretches back centuries and unfurls right into the present. One can add to it sunspots, evolution, platinum, chloroform . . . and now autism, as the science journalist Steve Silberman informs us, identified separately by Leo Kanner and Hans Asperger. The crucial difference is that Kanner had the fortune to publish his work in Baltimore, while Asperger had the misfortune to publish his in Nazi-controlled Vienna, and this accident of geopolitics lies at the tragic core of Silberman’s ambitious, meticulous and largehearted (if occasionally long-winded) history, “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.”
Over his many years at the Children’s Clinic in Vienna, Hans Asperger studied more than 200 children he would ultimately treat for what he called autistische Psychopathen (autistic psychopathy). Some were prodigies who couldn’t make it through school; others were more disabled and were shunted into asylums. But what they all had in common was a family of symptoms — in Silberman’s words, “social awkwardness, precocious abilities, and fascination with rules, laws, and schedules” — that Asperger recognized, right away, made up a continuum, one occupied by children and adults alike, and he viewed those differences as cause for celebration, not distress. When he finally shared his findings with the world, the only reason he focused on his higher-functioning patients, Silberman contends, was a chilling function of the era: The Nazis, on a mad campaign to purge the land of the “feebleminded,” were euthanizing institutionalized children with abandon. In so doing, Asperger accidentally gave the impression that autism was a rarefied condition among young geniuses, not the common syndrome he knew it to be. His paper on the subject, published in 1944, remained unavailable in English for decades, and his records were “buried with the ashes of his clinic,” which was bombed the same year.
Meanwhile, in the United States, a brilliant, energetic child psychiatrist named Leo Kanner was developing a radically different picture of autism, one that stipulated the condition was uncommon and unique, affecting only young children (anyone older was schizophrenic, psychotic — anything else) and, though biological in origin, somehow activated by cold and withholding parents. “By blaming parents for inadvertently causing their children’s autism,” Silberman writes, “Kanner made his syndrome a source of shame and stigma for families worldwide.”
Thus the history of autism was written, paving the way for a decades-long attempt to cure, rather than adapt. Parents chased after any actionable advice they could find — some of it, unfortunately, looking legally actionable in retrospect (like shock therapy, for instance, and LSD). Even more important, because Kanner’s needle-narrow definition of autism prevailed for so long, the public labored under the misapprehension that there was a sudden “epidemic” of autism when the DSM-III-R, published in 1987 (and just as critically, the DSM-IV in 1994), finally expanded the definition to include those who had slipped through the sieve for decades.
The autism pandemic, in other words, is an optical illusion, one brought about by an original sin of diagnostic parsimony. The implications here are staggering: Had the definition included Asperger’s original, expansive vision, it’s quite possible we wouldn’t have been hunting for environmental causes or pointing our fingers at anxious parents.
This is, without a doubt, a provocative argument that Silberman is making, one sure to draw plenty of pushback and anger. But he traces his history with scrupulous precision, and along the way he treats us to charming, pointillist portraits of historical figures who are presumed to have had Asperger’s, including Henry Cavendish and Nikola Tesla (the latter, when pressed by two elderly aunts as to which one was prettier, apparently replied that one was “not as ugly as the other”).
On the vexed subject of vaccinations, Silberman is poker-faced for the first 75 pages or so — a true feat, given that Andrew Wakefield’s incendiary study positing a link between the MMR vaccine and autism, published in Britain in 1998, was scantily substantiated from the start, a poisonous red herring that spooked a generation of parents. It contaminates the public consciousness to this day, though it has been debunked many times over and retracted by The Lancet. Eventually, however, Silberman firmly weighs in, eviscerating the paper and surveying its damage on the autism movement. “The most insidious effect,” he writes, was “diverting it from its original mission of demanding services and accommodations in education into a rancorous debate about vaccines.”
Yet this is the only part of Silberman’s sweeping history where I wish he had gone a bit further, though others may differ. Today debates about vaccination are as vibrant as ever, and rates are particularly low in Northern California, where the author resides. The problem isn’t confined to the groovier bastions of Marin County and San Francisco, either; Silicon Valley is part of it too (see “The Sickeningly Low Vaccination Rates at Silicon Valley Day Cares” and its follow-up in Wired this year). The very geeks we as a culture lionize for their analytical gifts now stand at the vanguard of a plainly irrational movement that threatens to jeopardize public health. Yet Silberman is mum on the subject — perhaps (and I’m speculating here) because he feels a debt to the tech titans who generously let him into their homes for a Wired article he did back in 2001, exploring the disproportionate number of autistic children born to the Valley’s coders and engineers. But not to wrestle with this persistent form of denialism among the gentry seems remiss, like a curious incident of a dog not barking.
His book also drags in places. Almost every character who appears in “NeuroTribes,” no matter how minor, is supplied with a back story so long it reaches a vanishing point (had 75 pages defected from my copy in the middle of the night, I’m not sure I would have missed them). Because Silberman is telling a history of the movement, he’s necessarily spotlighting parents who have the means and moxie to rattle cages, which leaves low-income families underrepresented; many of the autistic individuals he profiles also tilt toward the exquisitely articulate, because they’ve helped lead a movement. (They’re also more fun to write about, I suspect.) The consequence is that we don’t see autism in some of its more devastating forms.
But carry on nonetheless. “NeuroTribes” is beautifully told, humanizing, important. It has earned its enthusiastic foreword from Oliver Sacks; it has found its place on the shelf next to “Far From the Tree,” Andrew Solomon’s landmark appreciation of neurological differences. At its heart is a plea for the world to make accommodations for those with autism, not the other way around, and for researchers and the public alike to focus on getting them the services they need. They are, to use Temple Grandin’s words, “different, not less.” Better yet, indispensable: inseparably tied to innovation, showing us there are other ways to think and work and live.
The most moving chapter, one that had me fitfully weeping throughout, is the penultimate one, which chronicles that miraculous moment 20 or so years ago when autistic adults finally began to find their own tribe after lifetimes of misdiagnoses and alienation. Silberman tells the simple story of an autistic woman named Donna Williams who had just written a memoir, visiting two compatriots she had never met. “Seeing the thrill that Williams got from the lights playing off a Coke can,” Silberman writes of one, “he later sent her a belt covered in red sequins from Kmart as a gift.”
It’s an apt metaphor for our culture’s evolving attitude toward autism: If the light bounces off something a little differently, it can be seen in a whole new way.
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Everything is falling.
17 Aug 2015, 2:08 pm
, it breaks my heart to see so many of my son's friends whose parents are still buying into so much of this fear...their kids are pulling their hair out, their kids are being bullied, their kids are being abused and yet at this point, none of those parents is willing to think outside the box and read such a book. Because I was very close with the president of a group which advocates so many of these horrible treatments, etc., I know these parents are being made nuts and going bankrupt, while their kids are suffering. I hope the book gets the exposure it deserves among the medical community enough to help some of these kids.
