"We're still dealing with autism like it's this wacky historical aberration": Steve Silberman on the truth about autism

"Autistic people have always been here in large numbers," says the author of "Neurotribes," "and they need help"

Published September 19, 2015 5:30PM (EDT)

  (AP/Reuters/Lucy Nicholson/Mark J. Terrill)
(AP/Reuters/Lucy Nicholson/Mark J. Terrill)

About 100 pages into Steve Silberman’s new book about autism, "NeuroTribes," I began to wonder how exactly Silberman had managed to pull the whole thing off. By most rules of publishing, "NeuroTribes" shouldn’t exist. Yes, it’s a readable, engaging story. But it’s also a serious political and sociological critique, couched in a 500-page-long piece of original historical scholarship.

Silberman, a veteran Wired contributor, intended to write the book in a year. Instead, he took almost five. Luckily, his publishers stuck with him.

On the historical side, Silberman traces our society’s attempts to diagnose, explain and treat autism. That story is vivid, and often tragic—one of misplaced diagnoses, paranoid theories and ill-considered therapies that amount to institutionalized child abuse.

More than a history of autism, Silberman is examining the dark side of a society that fetishizes normalcy. Along the way, he’s asking some charged questions: How do we decide which kinds of minds to accept as normal, and which to dismiss as deformed or diseased? How should we recognize the diversity of human cognition? These questions are not just academic abstractions. They have implications for the basic rights, opportunities and social status that we afford to millions of people.

Over the phone, Silberman spoke with Salon about anti-vaxxers, the concept of neurodiversity, and whether autism represents a civil rights frontier.

This is a hefty book.

A lot of journalists write books, and they’re a couple hundred pages long. They’re sort of idea-advertisers, you know. The reason why I was writing this book was that I felt like there was a terrible problem that needed solving.

A couple of decades ago, the estimates of autism prevalence and the rates of diagnosis started going up very steeply. In basically every story that I read—Salon, the New York Times, the New Yorker, everybody—there would be some sentence that would say, “The reason why the number of diagnoses is increasing is a mystery.” And yet when I talked to people who have been in the field for a very long time, they kind of knew why the rates were going up. Did they know a hundred percent why the rates are going up? No, because science is always an open question. But, they had a sense that the diagnosis had been radically rewritten by [British psychiatrist] Lorna Wing and her colleagues in the late 1980s and early 1990s. And that accounted for the huge iceberg of diagnoses.

Into that vacuum of information came a million theories, including Andrew Wakefield’s hypothesis about the MMR vaccine. So on the one hand you had some really sketchy explanations for why the diagnoses were going up, and on the other hand, you had [people saying], “It’s a mystery!” I felt like there was a massive problem in science communication that needed to be solved by someone who was willing to do a lot of grunt work, and go deeply into the past.

Even going back to the 1940s, autism was a dumping ground for anxieties about modernity and mechanized society. Back then, people blamed industrialization for the presence of autism. Today, it’s vaccines and chemicals.

 That’s still happening. On [Neil Young’s] new album, “The Monsanto Years,” he blames the rise in autism on Monsanto and pesticides, based on this bullshit video from an MIT computer scientist who makes a ridiculous claim that Monsanto pesticides will cause almost half of all children on Earth to be autistic by 2025. Autism is still a projection screen for everyone’s fears about modernity.

You know, there’s a Forbes columnist, Emily Willingham, who wrote a wonderful post called “This Just In: Being Alive Linked to Autism.” And it’s really true; if you look at the parade of theories over the decades, it’s everything from increasing parental age—which, by the way, might have something do with a slight increase in autism—to stuff like refrigerator mothers, which determined the course of autistic people’s lives for decades, unchallenged.

Basically, blaming autism on bad parenting.

[Psychiatrist Leo] Kanner eventually ended up blaming autism primarily on parents, what he called refrigerator parenting. And that not only added a terrible burden of shame and stigma to the day-to-day challenges of raising an autistic child, which we all know are considerable, but his recommended course of treatment was to remove the child from the home and put the child in an institution, so that the child would be removed from the allegedly toxic family environment.

One of the things I constantly hear is, “How come I don’t remember a lot of autistic kids around when I was young?” There are several reasons, but one of the main ones is that non-verbal autistic kids were put away in institutions. Their parents were told to quietly remove their photos from the family albums, to never mention the children again.

We’re still dealing with autism like it’s this wacky historical aberration, caused by GMOs or whatever, instead of realizing that autistic people have always been here in large numbers, and that they need help, and that we’re not helping them and we’re not helping their families.

Should autism be understood as a disorder? As a disability?

Well, it’s certainly a disability.

OK, but what does it mean for something to be a disability?

Well, you know, blindness is a disability, or deafness is a disability, or being in a wheelchair is a disability. Disability is something our society understands and knows how to accommodate. We often don’t do it well. We need much more input from disabled people to figure out how to get it right. But it’s not something that’s beyond our means and collective imagination as a society.

Autism is a cognitive disability that deserves appropriate accommodations and support across the whole lifespan. Is it a disorder? The NIH and the Autism Speaks website describe it as a disorder. To me, disorder is like a theological label. It’s like saying that it’s against nature. There’s a proper order, and autism is not it, so let’s call it a disorder.

Autistic people have been around for a long time. At least one in 68 schoolchildren, the CDC currently estimates, is autistic. There are nearly as many autistic people [in the United States] as there are Jews. So, disorder? I don’t know. What’s disordered is our response to autism, which is to stigmatize it, and to call it a plague, and to describe autistic kids as kidnapped and not leading the life they were meant to lead. Really? Who’s to say? Perhaps we should help the autistic people who are here lead the best possible lives they can.

We forget how much these diagnostic categories shape our approaches to the world.

Yes, and the forgetting is not limited to lay people either. I’ll give you a very clear example. A couple of years ago, the CDC revised its estimate of autism’s prevalence among American schoolchildren up to 1 in 88. Now it’s 1 in 68, but then it was 1 in 88. And the director of the CDC, Thomas Frieden, simply explained that this was probably good news because their data indicated that pediatricians, teachers and parents were getting better at identifying autism in the early years of life. That’s why the numbers were going up, he suspected.

However, they also invited the former president of Autism Speaks, Mark Roithmayr, to the press conference. What Roithmayr did was to take out the Merriam-Webster Dictionary and read the definition of the word “epidemic.” And he said, you know, as of this morning, autism is officially an epidemic in the United States. It was a statement based on nothing. But the former chief science officer of Autism Speaks—Geraldine Dawson— immediately went out to all the networks and TV shows, and said, “It’s an epidemic. It’s an epidemic.”

We have to figure out some way to talk about autism that doesn’t create a fake epidemic—that acknowledges the fact that autistic people have been here for generations, ignored and isolated, and not given the help they needed. Is that an emergency? Yes. Is it a public health crisis? Yes. But it’s not the kind of public health crisis that is happening because there were no autistic people 20 years ago, and now there are millions.

Let’s say my child is born autistic. Is my kid going to live a worse life than someone who isn’t autistic? If so, then is autism a problem that needs to be fixed?

I’m gay. When I came out to my parents in high school—you know, they weren’t bad people. When I came out to them in high school, they were not ready to deal with it. My father wouldn’t even talk about it for years. They sent me to a therapist for a cure. Why? Because they feared that I would have a very unfulfilling life.

I can’t blame them for that, you know. Back then, homosexuality was classified as a mental illness in the DSM, the same diagnostic guide in which autism is classified as a disorder. Technically, I was mentally ill. So, technically, I needed a cure. However, after a couple of sessions, the therapist looked at me and said, “You know, you seem perfectly happy to me as you are.” Even I was afraid that I would have a terribly unfulfilling life. I thought I would never meet anyone. And now I’m a happily married gay man, because society changed in ways that destigmatized homosexuality and that allowed certain accommodations, like the Supreme Court just did for gay couples that want to get married.

Now, you know, I am not equating autism with homosexuality, I want to be very clear about that. They are very different things. Autism can be much more challenging, particularly in the early years of life for both parents and autistic people to deal with. However, these days, we have technology that enables people—autistic people who are unable to speak—to express their wishes and desires by typing. Should we invest in a cure because the lives of the autistic will be worse? How are we doing on the cure for schizophrenia? How were we doing on the cure for homosexuality, while it was still in the DSM? These are very complex genetic conditions that may not be amenable to a “cure.”

Now, does that mean that we shouldn’t be investing in treating certain aspects of autism? No, of course not. For instance, about a third of people on the spectrum suffer seizures at some point in their lives, often in adolescence. These seizures can be fatal. Many autistic kids suffer from gastrointestinal symptoms. This is a very serious problem. Should we be developing medications and diets to help them with their gastrointestinal symptoms or their seizures? Absolutely. But that’s a different thing from aiming to cure autism, or aiming to prevent it, for instance, through prenatal testing and abortions.

The problem with trying to eliminate autism from the gene pool is that it seems to travel—and this is still speculation—but it seems to travel with genes that convey certain advantages, particularly in math, music and technology. So, if we try to eliminate autism from the gene pool as the Nazis did, we could really screw ourselves.

You use the language of civil rights in your book. Is neurodiversity a next generation civil rights struggle?

Sometimes the word "neurodiversity" is framed as if it’s merely a political stance or a political conviction. It’s not. It’s a living fact, like biodiversity in rain forests. We clearly have people with many different kinds of minds. There are people with dyslexia, there are people with ADHD, there are people with autism, there are people at all points of the spectrum. And all of these labels are the names of “disorders,” but if you look at them another way, they’re just different kinds of human operating systems.

We have to get beyond the fact that these conditions were discovered by people looking for forms of illness, basically, and recognize that they’re just there. They’re part of the human fabric. They always have been. People with these conditions have been making contributions to the evolution of science, art and technology for centuries—invisibly, mostly. You know, most of the labels were invented in the 20th century. We have to start looking at those labels, instead of the checklist of modern disorders, as human resources that we have not learned to tap fully because we’ve been so busy treating those people like carriers of disorder.

What will that look like, going forward? What kind of political changes would a recognition of neurodiversity entail?

Well, one way to do it would be to change the resource priorities of enormous organizations like the NIH. Instead of putting millions a year into investigating or into finding more candidate genes for autism, put that money into investing in ways to give autistic people happier, healthier, and safer lives. What if we were innovating in ways that made life better for the autistic people who are already here, instead of innovating in ways that were purely to prevent more autistic people from being born?

One thing we should stop doing is talking behind the backs of autistic people. We should invite autistic people to contribute to policymaking. Imagine if the NAACP had no people of color on its board. There are no autistic people on the board of Autism Speaks.

On the subject of representation: Autistic women have traditionally been overlooked, both in diagnosis and in portrayals of autism in pop culture.

That’s very true. In fact, I’d go so far as to say that the oft-quoted 5-to-1 ratio, or 4-to-1 ratio, of autistic men to autistic women is purely speculative, because I think we don’t know yet how to look for autism in women. That’s the kind of research that the NIH should be funding. What are the traits of autistic women and how do they differ? How does the clinical presentation of autism differ in women? Women are socialized to fit in, to fade demurely into the background, to play down their eccentricities, to not challenge men.

One thing that’s very interesting to me is that many, many young autistic people that I meet describe themselves as non-binary, genderwise. So, they either don’t identify as a man or a woman, or they use non-standard pronouns, sometimes of their own invention, to describe themselves, or they describe themselves as bisexual or asexual. I think that’s very, very interesting, and science has virtually nothing about that.

That’s fascinating.

I write in my book about a guy named Jim Sinclair, who is really the founding father of the autism rights movement. He wrote a manifesto called “Don’t Mourn for Us” that was like the “Letter From Birmingham Jail” of neurodiversity. But he was born with the sexual characteristics of both genders, and he was raised as a little girl. What Jim said to me was that the reason why he was able to navigate being an intersex individual, and eventually claim a gender that he most identified with, was because as an autistic person, he was immune to certain forms of peer pressure. Just like he didn’t allow his parents to pressure him into being a woman, he didn’t allow his doctors and society to pressure him into feeling ashamed about his autism.

It’s become popular for undiagnosed people to describe themselves as falling somewhere on the autism spectrum—or to suggest diagnoses for others. Do these casual pop diagnoses help people understand autism as a spectrum? Or do they muddle our understanding of what autism actually is?

The danger of everybody claiming, oh well, you know, we’re all on the spectrum, aren’t we—the danger of the spectrum becoming so diffused is that then we can no longer recognize that most people who are really on the spectrum need a lot of help and assistance to get through day-to-day activities.

So it’s a little too easy to say, Oh yes, we’re all on the spectrum, isn’t so-and-so geeky. Autism is not just about being geeky. It’s not just about loving Dr. Who. It’s not just about being able to name all the Pokemon characters—it’s also about struggling with social interactions, being able to read subtle social signals, being able to not be bullied in school. I think it’s amusing that our entire culture is now obsessed with autism, but it’s less amusing as long as we’re not putting our research investments where they should be.

Do you think there’s something about autism that jibes with the zeitgeist? I’m thinking in particular about all these TV detectives with autistic characteristics. It’s become a little genre. 

Yes, there is something about autism that resonates with the zeitgeist. It’s in the air, right? There’s something about being alienated from everyone around you, being sort of dependent on technology, feeling like you can’t really express how you really feel, feeling like you can’t really understand other people’s emotions, when they tell you—it’s like all of those things are kind of universal human experiences that may be increasing because of the accelerating pace of modern life.

Autism taps into universal things. It’s very easy to understand why people who are not autistic relate to autistic people. I think it’s very easy to identify with autistic people in this day and age, but that doesn’t let us off the hook from actually helping them.

I found myself reading your book as a kind of anti-standardization manifesto. You’re telling a story of society trying to fit people in boxes, with some pretty tragic effects.

I think one of the most underestimated statements of the 20th century was Lorna Wing’s statement that “the spectrum shades imperceptibly into eccentric normality.” That is a profoundly subversive statement. Because what it suggests is that there is really no such thing as normality. There’s no “healthy ideal state of cognition.” What there is is a patchwork of different kinds of minds in society, trying to work together, and it has always been like that.

You know, in the 1950s, white, upper-middle-class males could fantasize that they were the defining example of normality. Women were not normal; they were hysterical. Gay people were not normal; they were sick, they were mentally ill. So what we find is this kind of central monolithic totem of society, which is one form of cognition to rule over them all. That is not the way it is, and it’s not the way it’s going to be, and we have to start thinking about our society in different ways so that we can accommodate the fact that life is various in its manifestations, and that cognition comes in many different flavors.

By Michael Schulson

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