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Author explores life on the expanding autism spectrum

January 19, 2016 at 6:30 PM EST
The rate of diagnosed cases of autism has more than doubled since 2000 and researchers have spent millions looking for causes and cures. In "NeuroTribes," author Steve Silberman explores the history behind this dramatic increase, arguing it's just always been much more common than we realized. William Brangham sits down with Silberman to discuss his work.
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JUDY WOODRUFF: Now the first of two looks we’re taking at the history of autism.

There seems to be more and more instances of it, but in this edition of the “NewsHour” Bookshelf, science writer Steve Silberman argues that the rise of autism is not some mysterious byproduct of the modern world, but instead a result of our growing understanding of the full range of the disorder.

William Brangham spoke with him recently in New York.

WILLIAM BRANGHAM: The most recent federal data shows one in every 68 American children is diagnosed with autism. Fifteen years ago, it was one in every 150 children.

In his book “NeuroTribes,” Steve Silberman explores the history behind that dramatic increase. “NeuroTribes” has been lauded as one of the best scientific books of the past year. It won the 2015 Samuel Johnson Prize for Non-Fiction and made the best-of lists for over half-a-dozen newspapers and magazines.

Silberman says the genesis of the book came more than 15 years ago, after he wrote this story for “Wired” magazine about autistic kids in Silicon Valley. After it ran, Silberman was swamped with e-mails from others who were struggling with the disease.

STEVE SILBERMAN, Author, “NeuroTribes”: People were wrestling with very profound day-to-day problems with finding health care, finding employment, finding schools for their kids.

Meanwhile, the entire world was having a conversation about autism, but it was a completely different conversation. It was about whether or not vaccines caused autism. And that dominated virtually every mention of autism in the media. Certainly, if there was an article about autism that didn’t mention vaccines, the comment thread on the Internet would be about vaccines.

And so I started to think that there was a disjunction between the problems that autistic people and their families were dealing with every day of their lives and what the whole world was talking about.

I learned that what happened has less to do with the slow and cautious progress of science than it does with the seductive power of storytelling.

WILLIAM BRANGHAM: Silberman’s deep dive into the world of autism took him back to the very first researchers who tried to define and diagnose the condition.

STEVE SILBERMAN: The true discover of autism was a guy named Hans Asperger in Vienna in the mid-1930s, and he and his colleagues discovered what we would now call the autism spectrum. It was a very, very broad condition with many different manifestations ranging from kids who couldn’t talk at all and would need help every day of their lives to one of his former patients became an astronomy professor, actually, but he was still autistic.

WILLIAM BRANGHAM: And Asperger saw those people at this end and at that end, and said they all share something similar.

STEVE SILBERMAN: They all share a very distinctive constellation of traits. And he had no illusions about that he would cure them.
He just wanted for them to take on the challenge of living in a world that wasn’t built for them.

So, one of the things about Hans Asperger was that he believed that autism was very, very common, that once you recognize the distinctive traits of autism, you would see them everywhere.

WILLIAM BRANGHAM: Asperger and his colleagues documented the range of patients they classified as having autism, but as Adolf Hitler came to power and invaded Austria, the work ceased and several of Asperger’s colleagues fled to the United States.

STEVE SILBERMAN: They had to leave. Otherwise, they would have been sent to a concentration camp.

They were rescued by a guy named Leo Kanner in Baltimore. Leo Kanner was one of the first child psychiatrists in America. Kanner framed autism very, very differently than Asperger had done. Whereas Asperger saw that it was common and a lifelong condition, Leo Kanner saw it as a very, very rare form of childhood psychosis.

He was quoted in “TIME” magazine as saying that parents caused autism by being too caught up in their own careers and too unloving. And he called them refrigerator parents, basically. And by blaming parents, that opened the door for psychologists to come in and say, well, actually, we know what to do with these children.

And the recommended course of treatment for autism for most of the 20th century was institutionalization.

WILLIAM BRANGHAM: Take the kids away from their families?

STEVE SILBERMAN: Exactly, because the families were considered toxic, in a sense. And so they were put in mental institutions, psych wards, state schools, where they were subjected to very, very brutal treatments.

You know, kids were subjected to shock treatments, lobotomies, kept in straitjackets. They were also put in wards with people who were not like them. They were often put in wards with adult psychotics. Those children didn’t thrive.

Leo Kanner eventually had to admit that — A, that parents didn’t cause autism, which created a terrible nightmare for families for decades.

WILLIAM BRANGHAM: Sure. I mean, imagine being a parent who is obviously, one, struggling with the difficulty of having a child struggling with this condition…

STEVE SILBERMAN: Yes.

WILLIAM BRANGHAM: … and then let alone having the world think that you were to blame because you were cold-hearted.

STEVE SILBERMAN: Exactly.

And I spoke to older parents who had been told by their psychiatrists to quietly remove the pictures of their children from the family album and never speak of them again.

WILLIAM BRANGHAM: Silberman reports that it wasn’t until the early 1980s that Asperger’s contributions were rediscovered.

That’s when a British psychiatrist named Lorna Wing, herself the mother of an autistic child, began taking a census of autistic kids in a particular suburb of London.

STEVE SILBERMAN: She and a research assistant named Judith Gould went to special schools. They went to clinics. They were digging through medical records.

And what they found was, yes, a bunch of autistic kids who met Kanner’s strict criteria, but they found a bunch of other kids who clearly had autistic traits, but didn’t quite meet Kanner’s criteria for diagnosis.

WILLIAM BRANGHAM: The strict criteria.

STEVE SILBERMAN: The strict criteria.

So, she was like, who are these kids? Like, why has no one noticed these children before? She didn’t know what to make of her data, until she came across a reference to Hans Asperger’s 1944 paper. She read it. She said, yes, this is it. This is exactly what I’m seeing.

And so she worked behind the scenes for several years with the people who were developing the definition of autism in the Diagnostic and Statistical Manual of Mental Disorders, the bible of psychiatry, to broaden the criteria for diagnosis to include what we would now call the autism spectrum.

WILLIAM BRANGHAM: Silberman argues it was this broadened definition of autism, that coupled with better diagnostic tools and better public education, that explains the dramatic rise in the number of diagnosed cases, not the repeatedly debunked theory that vaccines cause autism.

In your book, you argue that we should think of autism as a disability, but don’t we already think of it in that way?

STEVE SILBERMAN: I think we tend to think of autism as not only a disease, but as a historical aberration.

So, if it’s not vaccines, it’s Wi-Fi or it’s pesticides or it’s antidepressants in the water supply. It’s some factor in the toxic modern world. But once we realize that autism and autistic people have always been part of the human community, that there were always autistic people there, but they were hidden away, either behind the walls of institutions or behind other diagnostic labels, not getting the help that they need, we understand that autism is a very, very common disability, as Hans Asperger believed.

It’s not some rare form of childhood psychosis caused by parenting, as Leo Kanner believed. Because we have thought of it as the toxic byproduct of our modern world, we haven’t thought about making accommodations for, for instance, the many autistic adults that are out there.

WILLIAM BRANGHAM: OK. Steve Silberman, thank you very much.

STEVE SILBERMAN: Thank you. It’s great to be here.

JUDY WOODRUFF: And we will continue our Understanding Autism series tomorrow with a conversation with two reporters about the challenges facing adults with autism.

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