Wednesday, June 17, 2015

The forgotten history of autism

Steve Silberman gives a brief history of autism.

Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius.

Why you should listen

Steve Silberman is a writer and contributing editor for Wired and other national magazines. In 2001, he published "The Geek Syndrome," one of the first articles in the mainstream press to probe the complex relationship between autism and genius. The article was praised by experts in the field like neurologist Oliver Sacks and author Temple Grandin, but as time went on, Silberman was haunted by the biggest question that he had left unanswered: Why have rates of autism diagnosis increased so steeply in the past 30 years?

This question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.

A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.

Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it. Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” — a pair of doctors with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since. (This talk was part of a TED2015 session curated by Pop-Up Magazine: or @popupmag on Twitter.) 

Millions of parents worldwide still fear — needlessly — that vaccines cause autism. How did this dangerous false myth become so prevalent? As writer Steve Silberman shows during Pop-Up Magazine’s session at TED2015, it’s just another milestone in the decades-old history of misinformation and misunderstanding about autism.

In 1943 child psychologist Leo Kanner wrote about his eleven patients who seemed to inhabit private worlds. By the 1950s he was the world’s leading authority on autism, and he claimed it was incredibly rare, that he had seen fewer than 150 cases worldwide. But Kanner’s definition of autism was incredibly narrow: He classified it as an “infantile psychosis caused by cold and unaffectionate parents” and rejected any diagnoses of people who also had seizures, though we now know it’s common to have epilepsy and autism. He also wrote off special abilities that he saw in children with autism, like a child who could distinguish among eighteen symphonies before he turned two.
“As a result,” says Silberman, “autism became a source of shame and stigma, and two generations were shipped off to institutions ‘for their own good.’”

But in the 1970s, English psychiatrist Lorna Wing decided Kanner’s theories “were bloody stupid.” She dug up a 1944 paper from an Austrian doctor, written in German and buried in the aftermath of the war. The author was Hans Asperger. To Wing and her collaborator Judith Gould, Asperger’s research “made clear that Kanner’s model was way too narrow, that the reality of autism was much more colorful and diverse.” Asperger didn’t blame parents, and he called his patients his “little professors.” Indeed, he viewed autism “as a diverse continuum that spans an astonishing range of giftedness and disability.”

In the late 1980s and early 1990s, there was, says Silberman, “a perfect storm of autism awareness.” Wing and Gould began working with the American Psychiatric Association to broaden the criteria for diagnosis of what they called the autism spectrum; Rain Man was released and there was an autistic hero in every movie theater across the country; and at that same moment, the first easy-to-use clinical test for diagnosing autism was introduced.

Today the CDC estimates that one in 68 children in the US are on the autism spectrum, and indeed people on spectrum make up one of the largest minority groups in the world. As Silberman shows, there’s no benefit to the stigma of autism. Silberman quotes autism activist Zosia Zaks: “We need ‘all hands on deck’ – as much diversity as possible – to right the ship of humanity.” After all, says Silberman, “We can’t afford to waste a single brain.”