One of the forthcoming books I’m most excited about is Steve Silberman’s NeuroTribes: A smarter way of thinking about people who think differently. Like Oliver Sacks (and Steve has written the definitive profile of the neurologist), Steve is an incredibly sensitive observer of others. (He’s also a gifted writer and absurdly nice guy.) Steve isn’t interested in mere description of a condition – he wants to understand how his subjects see the world, immersing himself in their pleasures, passions and struggles.
Last weekend in The Wall Street Journal, I wrote about a new study looking at the information processing advantages of those with autism: they seem to notice more, at least in the visual realm. Given Steve’s book-in-progress and the inherent complexity of the subject, I was eager to ask him some questions. He was gracious enough to send along a few answers.
Steve is a long time contributor to Wired Magazine and blogs about science, mind, and culture at NeuroTribes on the Public Library of Science. He lives with his husband Keith Karraker in San Francisco.
LEHRER: How should the public think about autism? Is it a disease? A disability? Should we be searching for a cure?
SILBERMAN: Autism is one way of being human. The quickest way to cure yourself of shallow assumptions and stereotypes is to talk to autistic adults, who are often marginalized and overlooked in the national conversation. In the course of doing research for my book, I’ve spent a lot of time with adults on the spectrum and their families. When you’re talking to a soulful, witty, complex man or woman — in spoken language, email, or using text-to-speech software — the endless debates about autism and its likely cause du jour fade into the background. What steps forth is a whole person who struggles with certain issues day to day, many of which are made worse by the truly shocking lack of societal resources committed to helping autistic adults live happier, more secure, and more independent lives.
Autistic people are routinely described as lacking empathy and a sense of humor, having basic emotional deficits, or being so obsessive about their special interests that they must make boring company. But nothing could be further from the truth. One of the great secrets of life on the spectrum is how witty and playful autistic adults can be. Hans Asperger, one of two researchers who independently discovered autism in the 1940s, noticed how autistic people love punning. And Gawker has nothing on autistic snark. Imagine Mr. Spock on Star Trek arching a Vulcan eyebrow in the face of McCoy’s “highly illogical” behavior, and you have a perfect visual representation of how the follies of neurotypical society look to many autistic adults.
That said, autistic people do face certain challenges that seem built-in to the condition. They struggle with things like scheduling, prioritizing, multitasking, and becoming overwhelmed in noisy, social environments. They need a lot of time and space alone, as well as time spent in the company of other autistic people. One of the most beautiful and meaningful weeks I’ve ever spent was at an annual event called Autreat, where a few dozen people on the spectrum hang out together in “autistic space.” There are scheduled presentations and group activities, but it’s a very relaxing, low-pressure environment; really, a culture of its own, with its own traditions. For example, instead of erupting into applause after a presentation, Autreat folks raise their hands in the air and flap them. It’s a wonderful way of expressing appreciation without creating a burst of noise, and also of destigmatizing behavior for which they were punished and bullied as kids. Returning to the neurotypical world after a few days at Autreat was like landing in Times Square after spending a couple of months in Japan. “Normal” behavior suddenly seemed so loud, in-your-face, full of vacuous social posturing and braggadocio.
Of course, some autistic people — particularly as kids — can’t use spoken language at all, or have problems with self-injurious behavior. This is understandably highly upsetting to parents. But I’ve met many autistic adults who were written off as non-verbal or profoundly intellectually disabled when they were young, who turned out to be hilariously verbal and creative, given the right kinds of support and assistive technology. That doesn’t always happen. But you never know what the limits of a human life are until it’s been lived.
These are the reasons why I think it’s much more helpful and accurate to think of autism as a disability. Society understands that disabled people deserve respect, support, and reasonable accommodations. Autistic people deserve those things too. But autism fundraising organizations devote millions and millions of dollars a year to genetic research, and only a tiny fraction of that on researching things that could vastly improve the quality of life for autistic people and their families, like developing new applications of assistive technology for affordable platforms like the iPad. Neurotypicals stereotype autistics as obsessed and perseverative, but neurotypical society is obsessed and perseverative when talking about causes and cures for autism. We just spent ten years of very expensive research hunting for autism genes, only to discover that autism genetics is much more complex than we thought. We’re investing all this money in trying to make autistic people go away, instead of helping the millions of autistic people who are already here lead happier, safer, and more productive lives. That’s a shameful squandering of human resources.
LEHRER: What do you think this new study can teach us about so-called autistic savants?
SILBERMAN: Savants like Raymond Babbitt – the central character played by Dustin Hoffman in the 1988 film “Rain Man” — are one way that society got interested in what was formerly considered a very rare, even obscure disorder. That’s natural. Savant talents can be very impressive, even mind-blowing.
I remember meeting a wonderful young jazz musician named Matt Savage — who I wrote about in Wired — when he was 11. The first thing he said to me, in classic autistic fashion, was “When were you born?” I said “December 23, 1957.” He replied instantly, “Aw, Monday’s child, fair of face.” Obviously, that’s fascinating. The reigning authority on savant syndrome, Darold Treffert, told me that Matt is the “rarest of the rare.”
But what’s he doing now, nine years later? He’s doing what any very committed young jazz musician should do: he’s playing gigs with his trio and studying at Berklee College of Music. The fact that he received a diagnosis of PDD-NOS when he was a baby seems less important now than the fact that he’s developing his creativity and honing his distinctive skills, which include the special gifts of his atypical brain.
The most provocative thing about Nilli Lavie’s new study is that it shows that one of these gifts — the ability to take in high amounts of visual information at any one time — is not limited to savants, but is a feature of the characteristic ways that autistic brains process information. The study suggests that we’re looking at autistic savants the wrong way — instead of being “the rarest of the rare,” they’re representative of an autistic cognitive style that can be superior to that of neurotypicals in some ways. It’s time to talk less about autistic deficits and extraordinary savants, and more about the strengths of atypical cognitive styles like autism.
I asked one of the researchers who worked on the study, Anna Remington, about its implications. She told me, “Sometimes this extra information can be a distraction, but in many situations, it will mean that autistics can perform at a higher level than typical adults. This knowledge could be used to create learning programs that harness these special abilities, and also highlights the fact that there are areas such as data analysis and IT where individuals with ASD could make an important contribution to society. We hope that understanding this increased ability to process information may enable people with the condition to capitalize on their unique strengths.”
LEHRER: How has researching your forthcoming book changed the way you think about the condition?
SILBERMAN: When I first started thinking about a book after writing “The Geek Syndrome” ten years ago, I was mostly interested in the science of causes and cures, like a typical neurotypical. Now I’m much more interested in addressing the social problems faced by autistic people and their families. By continuing to think about autism as a disease in search of a cure instead of a disability that deserves support, services, accomodations, and highly creative research into education and assistive technology, we’re a society in denial. The new CDC report saying that one in 88 children is autistic should be a wake-up call to the fact that we’re currently offering very few resources to these folks once they become adults. Instead of asking “How can we cure autism?” we should be asking, “How can we ensure that millions of autistic people lead happy and healthy lives?”