In May of 2000, Wired magazine writer Steve Silberman was covering an Alaskan cruise for a hundred distinguished computer programmers, and asked one of the most distinguished, Larry Wall, creator of the programming language Perl, if he could interview him later on at home.
“Sure,” was the answer. “But just so you know, we have an autistic daughter.”
Six months later, Silberman was writing about another high-profile Silicon Valley family, and asked for another home interview. The reply was eerily similar: Yes, but “I should tell you, we have an autistic daughter.”
Soon after, Silberman recalls, he was sitting at a San Francisco cafe and telling a friend about that odd coincidence, when “a woman at the next table blurted out, ‘Do you realize what’s happening? I’m a special-ed teacher in Silicon Valley. There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children.”
He got a chill — the kind of chill that makes him want to start reporting and researching. At that point, he says, “I was very naive about autism. Like most people at the time, everything I knew about autism I had learned from ‘Rain Man.’ ”
He is naive no longer. First, he wrote a landmark article in Wired, “The Geek Syndrome,” about why the autism diagnoses in Silicon Valley might be going up. (The theory: People carrying genes for autism who were working in the technology industry had more social opportunities to meet one another and have children together than they’d ever had in history — a process that geneticists call “assortative mating.”)
And now, Silberman has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a history of society’s changing attitudes toward autism, as seen through the eyes of parents, clinicians and autistic people themselves. It’s due out Aug. 25 and — if my appreciation for its breadth, depth and power is any indication — it’s likely to make a big splash. (Also provoke some controversy, given its unflinching takes on some of autism’s more contentious issues, from possible causes to biomedical “cures”.)
I asked Silberman to answer what seem to me the most burning questions about autism: Is prevalence really rising? How to explain kids who lose their diagnosis? What does the research promise? Our conversation, lightly edited, beginning with more about “The Geek Syndrome”:
SS: The article came out, it was very well received, and I got tons of email about it — and then I kept getting email about it for 10 years, which is very unusual. But here’s the thing: When I wrote the article, most of the families I talked to were keenly interested in what had caused their child’s autism. Some believed that it was vaccines, some believed that it was environmental contaminants, some thought it was genetics.
But by the time a decade had gone by, what they were worried about was not what had caused their child’s autism; what they were worried about was the shocking lack of services for autistic teenagers and adults — like transitional services to help them go from school to the workplace, services to help them learn how to live independently in the community, and so on.
So I began to be haunted by the fact that my narrow focus on the dynamics of autism in high-tech communities had, in a sense, led me astray, and that there was a much larger problem for autistic people and their families worldwide, which is the availability of services. That’s what parents are really wrestling with on a day-to-day basis.
So you moved with the times…and also, services are something we can actually do something about right now.
Exactly. That’s actually a more profound statement than one might think. Some very well-meaning people think that society’s best investment would be to ‘cure autism.’ Well, we’ve been working on curing schizophrenia for a very long time, and for decades, psychoanalysts were working on ‘curing’ homosexuality. But these are very, very complex genetic conditions, and have a lot of contributing factors; perhaps a much more humane thing to do is to ensure that autistic people and their families have access to happier, healthier, safer, more secure, more engaged and more productive lives. That goal is within our reach right now and doesn’t depend on the next medical breakthrough.
You’ve done a lot of reporting over the years into potential risk factors for autism in the environment — this week’s cause-of-autism du jour — and you know what happens to those stories: They make a big splash, everyone’s talking about them, and then they quietly go away.
If we look at what has been blamed for causing autism over the last few years, it’s everything from autoimmune dysfunction, impaired sugar metabolism, antidepressants in the water supply, mitochondrial disorders, living near a freeway, too little oxytocin, too much testosterone… the list goes on and on.
“So it’s an epidemic of recognition, really.”
Might some of those things contribute to autism? Sure. But what we have to remember is that there have been, in recent years, at least three big studies that look at the crucial question: Is autism actually increasing in the population or is it just that we’re getting better at diagnosing it, and becoming more aware of it as a society, and learning how to spot it in early childhood?
And the conclusion of all three studies — including one in Sweden in 2015 that involved over 1 million children, including 19,000 twin pairs, and one in England by a researcher named Terry Brugha — was that the rates of autism have not really been going up. What has been going up is the rates of diagnosis. So it’s an epidemic of recognition, really.
So given the latest, biggest, best studies, it really does look like that’s what’s going on, and not an actual rise in prevalence? Continue reading