DVP Interview: Shannon Des Roches Rosa and Steve Silberman

Shannon Des Roches Rosa interviewed Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, on June 20, 2015 for the Disability Visibility Project at the San Francisco Public Library. Below are condensed excerpts from their conversation.

On the predominant narrative about autism

Steve: I started to develop the idea that there was a terrible problem in society, which was that the rise in diagnoses of autism in recent years — which was undeniable and striking — had never been adequately explained to parents in a way they could understand.

Clinicians would say things like,”Well, it’s broadened diagnostic criteria and better case finding.” But what does that kind of language mean to a young mother who is searching her two year old’s face for signs of eye contact?

Shannon: Yeah.

Steve: And I thought, this is a storytelling problem. The problem is that there’s one story that long time clinicians and researchers in the field understand, and there’s another story that parents understand, and the parents’ story is very compelling — the notion that pharmaceutical companies are poisoning a generation of children and covering it up and convincing journalists to assist in this massive global conspiracy. Is that a plausible story? Yes. Has it happened in the past? Yes. Have pharmaceutical companies covered up even massive fatalities caused by drugs that should of been taken off the market. Yes, yes, yes. It’s completely believable, but in this case, it’s wrong.

Shannon: Yeah.

Steve: And so I thought, somebody who can tell stories has got to go in there and try to make a big effort to tell a story that’s true and emotionally powerful, but it’s not this vaccine story.

On writing the book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity

Shannon: So in the course of the five years of researching your book, what are some of the more unexpected and surprising things that you’ve uncovered?

Steve: When I was writing The Geek Syndrome, I stumbled across what is now called the neurodiversity movement, which was launched by autistic people who were tired of being described as puzzles and medical mysteries, and instead wanted to experience their lives as worthwhile, and beautiful, and valuable.

Shannon: And tell their own stories.

Steve: And tell their own story. Exactly. And so I thought that was very interesting. There were people who didn’t want to be described just by the deficits, the alleged deficits they have. So I knew, I just had this intuitive feeling that there was some kind of really interesting story there, even if I thought I couldn’t solve the mystery of why the number of diagnoses were going up. What I found, much to my surprise, was that the basic timeline of autism’s discovery — which is reiterated in thousands of textbooks and books and Wikipedia — was incorrect.

Shannon: Oh.

Steve: And that if you understood the basic timeline of autism’s discovery you would completely understand why the numbers have been going up so strikingly in recent decades.

Shannon: That’s important.

Steve: It wasn’t even hard to understand. Basically, no one had done the work of excavation required to understand the true story of autism’s discovery, and in order to do it, I had to do stuff like have documents translated from the German, and I looked in libraries all over the world for obscure papers, some of which were never even published, drafts of papers and stuff.

Shannon: Wow.

Steve: And once I started putting things together, I discovered the following, which was completely revolutionary. The story of autism’s discovery — as it is usually told — is that a child psychologist at Johns Hopkins hospital named Leo Kanner in 1943 wrote a paper about autism describing 11 of the young patients in his clinic.

And that is presented as the landmark discovery of autism. And a year later, this other guy in Vienna named Hans Asperger wrote this paper that’s considered merely a footnote to Kanner’s amazing discovery. And what everyone says is that: A, they were two completely independent discoveries, they were not aware of each other’s work. And B: that Kanner somehow never read Asperger’s paper. Like through the course of his whole career, he never read it. As I kept on with the research, that seemed really implausible. Why? Because people usually say, oh Kanner never read it because it was published in German. Well, German was Kanner’s native language.

Shannon: [LAUGH]

Steve: …Asperger’s article was published in this obscure German language neurological journal. Well actually Kanner references that journal like dozens of times in his other papers. So it was clear that Kanner certainly would have read it probably almost immediately when it was published in its original language.

Shannon: Got it.

Steve: Why did he not mention it? The biggest historical discovery in my book was that the man who worked in Asperger’s clinic, and helped Asperger develop his conception of autism, and was Asperger’s chief diagnostician — a man named Georg Frankl — had to flee Austria in the late 1930’s because that’s when the Nazis took over. He was able to flee Austria with the help of a psychiatrist in Baltimore named Leo Kanner, who brought him to John Hopkins, to run this children’s clinic.

Georg Frankl turns out to be the guy who diagnosed Kanner’s first three autistic patients. So Kanner was certainly aware of Asperger’s work through Frankl’s expertise in autism. He was depending on it. He sent his first three autistic patients — which he obviously did not know what to do with — to Frankl and this other person, Anni Weiss, who was another of Asperger’s core team in Vienna, was also in Baltimore at the same time because she had come to America and married Frankl.

And so Kanner literally had the best expertise from Asperger’s clinic in Johns Hopkins when he quote unquote, “discovered” autism. But the problem was that Kanner’s interpretation of autism was profoundly different from Asperger’s. Asperger and Frankl’s conception of autism was what we now call a spectrum — a very broad range of presentations, diverse manifestations, and colorful eccentricities.

Asperger conceived of autism as very common. He said that once you knew what to look for, you saw it everywhere. He also said that autistic people were already familiar to most people in world literature, in the pop culture archetypes of the absent minded professor and the socially awkward scientist.

He also knew that autism was a lifelong condition, because he followed some of his patients for ten years. He had seen more than 200 autistic kids in his practice over the course of a decade — which somehow everyone seems to overlook in his paper. Everyone ignores that. He only describes four kids in his 1944 paper but those kids were, I believe, composite portraits. He was just trying to create four perfect archetypes so that his fellow clinicians could recognize them when they walked in the clinic.

Future thinking about autism and disability

Shannon: So what kinds of changes in public understanding have you seen in the course of your time spent writing on this topic and along the same lines, what is your biggest hope for your book in terms of how it will influence public thinking and conversations about autism and disability?

Steve: Well, the one thing that has changed is that five years ago, when I started writing the book, I was really worried because the vaccine theory of autism causation was still very popular and I thought people would just think I was insane writing this book. But the anti-vaccine movement has really lost a lot of credibility in recent years because there have been so many outbreaks of communicable diseases that were practically eradicated in the late 20th century because of vaccines.

Earlier this year, there was the so-called Disneyland measles outbreak, and there have also been mumps outbreaks recently. And so people are noticing, wow, okay, people actually still get the measles and kids with impaired immune systems can die of the measles. So there’s this theory that vaccines cause autism which, by the way, has been disproven, debunked, discredited in many, many studies and meta-analyses.

It used to be that people like Jenny McCarthy were considered the voice of autism parenting: “Mommy Warriors.” But now, it’s actually people like you who I think are the real voice of autism parenting. And it turns out that parents like you have always been the compassionate, true voice of autism parenting, like the parents who started the National Society for Autistic Children. They had a very compassionate and positive attitude. What they were working for was changes in laws so that their kids could get an education, and those laws passed and generations of kids benefitted. And that whole tradition of demanding accommodations and changes to laws had been forgotten behind all the noise of the anti-vaccine movement.

What I hope is that people read my book and can come to an understanding of why the number of diagnoses has gone up so much in recent years. I want people to understand that autistic people have always been here and have been quietly making contributions to society that have made society better.

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Shannon Des Roches Rosa is Senior Editor at Thinking Person’s Guide to Autism. She’s also a Shot@Life Champion, BlogHer contributing editor, writer, parent, geek, cheerful grump. Twitter: @shannonrosa

Steve Silberman has covered science and cultural affairs for WIRED and other national magazines for more than twenty years. His writing has appeared in The New Yorker, TIME, Nature, and Salon. He lives in San Francisco. His new book is called Neurotribes: The Legacy of Autism and the Future of Neurodiversity. Twitter: @stevesilberman