When it comes to autism, how do we separate truth from fiction? Depending on whom you ask, autism is an insidious plague, which we must extinguish, or a valued nerd disease, which fuels mountains of startup investment in places that can tolerate eccentricity and value a certain kind of hyperfocused cognitive style.
Steve Silberman is a Bay Area writer who, for his Wired article “The Geek Syndrome,” dove into Silicon Valley culture in 2001 to explore the contribution of people on the autism spectrum to the dot-com boom. He followed up that article with years of research and study, culminating in his new book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, which, according to the late Oliver Sacks, is required reading “on the bookshelf of anyone interested in autism and the workings of the human brain.”
In a recent conversation, Silberman teased out the intricacies of autism as a pathology and as a different way of seeing the world.
RH: What got you interested in writing a book about autism?
Silberman: I’m fascinated by the subject of autism because some part of me really knows what it’s like to be completely at sea in social situations, trying to read signals in a language that I can’t comprehend and being in a continuous state of sensory overload. In my book, I tried to make autistic people emblematic of more than a condition considered to be a disorder or just a checklist of deficits. I attempted to bring them forth in the full breadth of their humanity, just as Oliver Sacks did in Anthropologist on Mars. Sacks subverted many of the clinical stereotypes of autistic people simply by describing Temple Grandin accurately and in full possession of all of her faculties, including her emotions. Autistic people up to that point had generally been described in terms more befitting of robots or automatons. Sacks was able to show her as, yes, eccentric, and, yes, quirky—but in doing that, he only makes her more loveable and human.
RH: Many books on autism have been written by parents. How does their perspective differ from yours?
Silberman: The parents’ books are about the difficulties they faced raising autistic children. But it’s important to bear in mind that not all these difficulties are the inevitable product of their child’s autism. Some of them are the product of societal stigma and the failure of society to meet the needs of the child and family.
The first time I met a bunch of autistic adults who were just hanging out and not being evaluated, what struck me most was that they were really happy, funny, and relaxed. I was like “Jeez, these people are actually walking around like they’re not sick. Yes, they’re flapping their hands and some of them can’t stand bright lights and perfumes. Yes, they’re amazingly frank, but that’s actually kind of refreshing.” In the autistic space, everybody was just doing their thing. So if you feel like flapping your hands, that’s fine. If someone wants to rock in a corner, that’s fine.
That’s one reason I called my book Neurotribes. Rather than examining a disorder, I’m describing people who appreciate each other in their fullness when nobody’s around to tell them that they’re sick. You know, I’m gay, and my condition was in the DSM until the ’70s, when political action spurred the change. Of course, unlike homosexuality, autism truly is a disability, but I don’t think of it as a disease.
RH: So, you think many people with autism still need help?
Silberman: People who have autism struggle in day-to-day life and often need special help and support. Sometimes they struggle so much that they can’t talk without some sort of alternative mode of communication. Anyone who says that autism isn’t a disability is fooling themselves. But the tricky thing about autism is that it’s a disability that, as psychiatrist Lorna Wing said to me, “shades off imperceptibly into eccentric normality.” In other words, there’s no bright line between autism and nonautism. Furthermore, there are no traits or behaviors that are so specifically autistic that neurotypical people don’t do them as well. Neurotypical people jump up and down when they’re happy. They also get really anxious in social situations. It’s all a matter of degree and syndromic simultaneity, or things occurring together. So repetitive behavior alone isn’t enough to diagnose autism. But if you have repetitive behavior and the struggle to read social signals and sensory sensitivities, well, it’s probably autism.
RH: Why has autism been so stigmatized?
Silberman: It was discovered by psychologists and psychiatrists, so it was inevitable that it would start out as a pathology. Sometimes I talk to young autism activists who are outraged that it was ever considered a pathology, but the children who initially came to the attention of Leo Kanner and Hans Asperger were quite impaired and disabled. You could argue how much of that reflected the impact of social context, but they were clearly outside the norm. Even so, Kanner and Asperger took different approaches toward autism, and that would turn out to be fateful.
RH: Fateful? Who were Asperger and Kanner?
Silberman: Back in the 1940s, Asperger’s clinic at the University of Vienna was like a combination clinic and school. Kids weren’t just brought there for evaluation and tests: they lived there for weeks, and Asperger and his colleagues lived with them—which gave them an invaluable opportunity to observe the kids at play, at meals, and in the course of their daily lives. It was a place of last resort for kids who’d been kicked out of schools or fallen afoul of the juvenile court system, so Asperger’s team was highly motivated to help them find their way in life. They did that, in part, by listening to them, and by developing ways of teaching them that were appropriate for their atypical learning styles. Crucially, Asperger saw autism as a lifelong condition, what we now call a spectrum—a broad and diverse range of gifts and challenges.
Kanner was involved in a different kind of project: launching the field of child psychiatry in America from his clinic at Johns Hopkins. It’s not an accident that he framed autism strictly as a form of infantile psychosis-—teenagers and adults weren’t even on his radar-—and insisted on defining it very narrowly. He hoped to establish “early infantile autism” as a valid clinical entity, but to do that, he had to argue that it was a “unique syndrome,” rather than being blurry at the edges. So he was resistant to the idea that autism presented in more or less severe forms. By doing so, and by never mentioning Asperger’s work in his own papers, he obscured the existence of the spectrum for decades—which had the effect of rendering most autistic people invisible to medicine, while others ended up getting mislabeled with conditions like childhood schizophrenia and minimal brain damage. Thus, the prevalence of autism was vastly underestimated for most of the 20th century, until the scope of the diagnostic criteria was widened in the 1980s and ’90s to reflect the clinical reality of the spectrum.
RH: You write in your book, “Kanner made his syndrome a source of shame and stigma for families worldwide.”
Silberman: Kanner blamed parents. He said, “These children have been kept in a refrigerator that didn’t defrost.” That was quoted in Time Magazine in the late 1940s, and that image proved indelible in the popular imagination.
At the time, psychiatry was hooked on the concept of the schizophrenegenic mother. The psychological literature was filled with domineering Jewish women who aroused castration anxiety in their husbands, and Kanner was just riffing on a theme that would’ve been familiar to many of his colleagues. By doing so, he ended up making institutionalization the recommended treatment for autism—to remove children from an allegedly toxic family environment. And once in the institutions, these children became fair game for straightjackets and other forms of restraint and seclusion, and even experimental treatments, like LSD every day for months. These children often became self-injurious because they’d been put into unimaginable situations. But their behavior in a psych ward became confused with the natural course of autism, and the diagnosis came to be considered a fate worse than death.
RH: What are your thoughts about the vaccines-cause-autism controversy?
Silberman: I completely understand why many parents believe vaccines cause autism. After all, the timing of the emergence of autistic behavior is about age 2 or 3, which is about the time kids are getting vaccines. Also Big Pharma is completely capable of the most sinister kinds of conspiracies and cover-ups. However, we’ve spent 10 years thoroughly looking into that hypothesis, which came from a study that’s since been debunked, retracted, and disowned by its coauthors. So I’d say to parents that they have much more to worry about by not vaccinating their children.
RH: What’s one message you’d like therapists to hear about autism?
Silberman: When parents and clinicians view people on the spectrum, rather than classifying behaviors as autistic versus normal, they should ask, “Why is that glorious human being in front of my eyes behaving that way? Is there anything I can do to reduce their stress and discomfort?” Above all, it’s crucial to look at autistic behavior as human behavior, instead of the sign of a disorder.