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.
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.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, who conducted in-depth studies of children diagnosed with autism in the mid-twentieth century, 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.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’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.This blog is excerpted from "Destigmatizing Autism: The Future of Neurodiversity." Want to read more articles like this? Subscribe to Psychotherapy Networker Today!