Steve Silberman on Autism's History and the 'Neurodiversity' Movement

Many parents likely fear the word “autism” but journalist Steven Silberman advocates a completely different approach in his sweeping book, "Neurotribes: The Legacy of Autism and the Future of Neurodiversity."

Silberman dove into autism in 2001 when his article "The Geek Syndrome" appeared in Wired. Back then, he was focused on autism's cause.

The popularity of that article introduced him to many parents of autistic children. But as Silberman began to spend more time alongside those on the autistic spectrum, he realized that much of the national conversation about autism (and Silberman argues, the resources available to help people live their lives) is focused on the wrong thing.

"Years passed," he writes in his book, "and I still got email about 'The Geek Syndrome' nearly every week."

He began to worry that he'd missed "a larger and more important story." He continues in the book:

"A seemingly simple question began to formulate in my mind: After seventy years of research on autism, why do we still seem to know so little about it?

"To find the answer to that question for this book, I decided to start my reporting at the very beginning, even before Kanner's and Asperger's allegedly independent discoveries of autism in the 1940s. By taking nothing for granted, I learned that the standard time line of autism history -- its creation myth so to speak --  is fundamentally flawed in ways that render autistic people in previous generations harder to see. Until these inaccuracies in the time line are corrected, they will continue to hamper our ability to make wise choices about the kinds of research and societal accommodations that would be most beneficial to autistic people and their families."

In a wide-ranging conversation recently on KQED's Forum, Silberman addressed questions about the history of autism and Asperger's, misperceptions about the disorders, how different genders are affected by autism and the need for more services and resources for adults and families coping with autism.

Here are some highlights of Silberman's discussion with host Michael Krasny:

Autism is Not New
“I think it’s a mistake to see autism as a modern phenomenon and some kind of historical aberration," Silberman said. "I actually think that’s one of the biggest traps in the world of autism.”

The Quest for the Austism Gene
“Every couple of years a scientist announces that they have found what could be a biomarker for autism -- 'too much white matter.' Then two years later you read, 'too little white matter.' Actually, we still haven't zeroed in on exactly what the biomarkers for autism are. There is still no brain scan or blood test that can diagnose somebody. People are diagnosed on the basis of subjective clinical observations and a set of standardized clinical instruments. But it's still about observing people and about behavior and social context. ...

“Back when I wrote 'Geek Syndrome' a lot of parents were telling me ‘Oh yes, they're going to discover the autism gene.' Well they did -- except it turned out that there were more than a thousand candidate genes that contribute to autism. Not only that, each autistic person is genetically quite unique. As one of the big autism geneticists said and there's a saying in the autistic community ‘If you've met one autistic person, you've met one autistic person.’”

Great Minds Often Think Differently
“That is the message of neurodiversity: the styles of human cognition should be celebrated rather than pathologized. A very quick definition of 'neurodiversity' is ‘Great minds don’t think alike, necessarily.' There are lots of different styles of cognition, and we have to stop pathologizing different ones, deal with the real, serious challenges that certain forms of neurodiversity present to people and their families and embrace that diversity as one of the strengths of our society.”

There Are Autistic Adults, Too
"A truly shocking report came out in June from the Government Accountability Office that reported that the research into improving the lives of autistic adults has actually gone down in recent years.

“We have to stop talking about ‘autistic children, autistic children, autistic children.’ We should talk about autistic people. If you think about it, there are more autistic adults than there are autistic children, and they are still virtually invisible to our society. There are very few services and resources available to them. It is one of the main things I want to change with my book. ... If you're an academic researcher who wants a promising area of study, please start looking at the lives -- and the life courses -- of autistic adults to figure out ways that we can support them as they go through these changes."

Parents are Heroes
"There are so few resources for families. People often end up quitting their jobs to become sort of case managers for their children. People have had to prevail in the face of medical models of autism that blamed them. ... The parents of autistic kids and autistic people themselves are all heroes."