Autism research is currently dominated by one big question and one sub-query: What causes the neurodevelopmental disorder? And why does it manifest so differently from person to person? These are critical questions, but largely irrelevant to autistic people and those who care about them. The conversations had in homes circles a different big question: How can we make life better for neurologically diverse individuals?
Many are hoping to shift the focus of the autism discussion in this direction. Science journalist Steve Silberman is one of them. A writer for the New York Times, Silberman received well-deserved praise for his a 2001 article in Wired called “The Geek Syndrome.” Ever since, Silberman has been digging through the gritty history of autism research. This work has finally culminated in his great new book “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” In the book, Silberman makes a strong argument that the research world and the public need to start understanding autism not strictly as an intellectual disorder, but as a complex set of traits.
Inverse spoke to Silberman about his new book and how much has changed with diagnosing and treating autism over the last century.
You write in the Introduction how your interest in learning and writing about autism began. Since you started, has there been a particular notion or idea that has shaped how you’ve approached the subject, or was it simply a desire to learn more about what seems to have been a choppy, buried history?
As I mention in the book, I first got interested in autism when I went on this cruise with 100 other computer programmers in Alaska. I asked one of the star programmers if I could interview him at home when the cruise was over and he said “Yeah sure, but you should know I have an autistic daughter.” And that didn’t mean that much to me, like most people who didn’t have a personal connection to autism. I didn’t know that much about autism behind Rain Man. I believed it was a very rare neurological condition.
Then a couple months later, I was writing about another technologically adept family in Silicon Valley, and I asked the sister-in-law of the woman I was profiling if I could come to her house and interview her, and she said “Yeah, but I should tell you we have an autistic daughter.” It was such a striking coincidence, and I was telling that story to a friend of mine in a cafe in San Francisco. And this woman at the next table said “Oh my god, do you realize what’s happening? There’s an epidemic of autism in Silicon Valley.”
That was how I initially became interested in it. And wrote this article for Wired in 2001 called “The Geek Syndrome.” But really, the impetus to write the book was that when the “The Geek Syndrome” came out, the world was having this sort of very angry argument about vaccines. And a lot of parents were very fearful that vaccines were causing this global epidemic of autism.
As time went on, two things happened. One was I felt that I had missed the larger story about why the number of diagnoses were going up all over the world — not just in high-tech communities. The other thing that happened was that as time went on, the families that I had wrote about were less concerned with what had caused their child’s autism, and they were more concerned with the day-to-day realities of trying to get by without much support, like access to services, long waiting-lists for even to get a diagnosis. I had felt that by putting so much focus on the causes of autism, society was really looking in the wrong direction. It might help scientists since it gets them grants, but it wasn’t really helping autistic people and their families.
As a journalist, do you find that you’re able to parse and navigate through the scientific and clinical literature on autism in different ways from researchers, doctors, and relatives of autistic individuals? And if so, do you find that this gave you a different perspective on autism differently from those people?
I’ve been doing science writing for more than 20 years. So as a journalist, I would have maybe two weeks to go peruse the literature in whatever subject I was writing about. And even that’s a luxury — that’s longform magazine writing. But in this case, I had years to read literally hundreds if not thousands of papers. The bibliography on my website is 36 pages long.
And so I was able to watch the clinical views of autism change slowly over time. And it was completely fascinating. It was like a core sample of changing beliefs about the human mind, and changing societal attitudes toward developmental disability and mental illness. In that sense. I got this sort of long view of society’s changing attitudes towards not just autism, but also parenting, and children with learning differences.
The other thing I did — very consciously — was to not only look at autism through a clinical lense. One of the things that’s very new in my book is that I talk about the social context of how Hans Asperger’s incredibly prescient work on autism occurred. It blows my mind that all the many dozens of books that mentioned Asperger Syndrome or Hans Asperger, none of them mentioned, “oh by the way, he’s doing work during the Holocaust.” Like the camera had never pulled back to notice Hans Asperger was certainly walking to work every morning past burning Jewish storefronts, really. This global cataclysm was unfolding all around him, and he was at the center of it really, since the University of Vienna — where he was working — was the center of eugenics research once the Nazis took it over. And yet, no one had every looked at his work in the context of the unbelievably terrible fact that he was working for Nazis under Nazi Vienna.
And of course that affected how he presented his work on the children to the Nazis, since they were engaged in a secret extermination program against disabled children. So Hans Asperger was doing this risky thing, to defend the children in his clinic from the Nazis. And I can’t believe no one had talked about that stuff before.
The chapter Pandora’s Box seems to describe a kind of rubicon-like era for the diagnosis and treatment of autism — where it was very close to being narrowly defined as a rare condition, but evolved soon after as a category of disability that would finally allow people to understand it on its own terms, for the better. In today’s world, is there a place for a succinct way you might describe how autism fits in the world of intellectual disorders? Or would such a description fall prey to precisely the narrow-minded way Kanner and others approached autism?
The thing that makes autism hard to define is that it’s so diverse in its manifestation. If you think about it, autistic people are more different from each other than non-autistic people are. Because autistic people might be non-verbal, some might require constant care just to live, others on the spectrum with, say Asperger Syndrome, could be the CTO of a billion-dollar Silicon Valley company. Someone like Bram Cohen, who invented Bit Torrent and came out about his autism several years ago.
So it’s such a diverse population. There’s a saying in the autistic community: If you meet one autistic person, you’ve met one autistic person. And that’s exactly true. Interestingly enough, that turns out to be true also for geneticists — each autistic person is genetically unique. It’s not there’s just one autistic gene.
You really have to ask, what do they have in common? Those would be certain challenges, and that certain teaching methods tend to work across the spectrum. But it’s a very heterogenous condition. That makes it very difficult for clinicians to define it. The current understanding is that there are multiple subtypes, that may be caused by multiple pathways.
There is no such thing as autism in the same way there is such thing as tuberculosis. It’s not something that exists that exists outside of descriptions of behavior. Autism is just a description of behavior. There’s no biomarker, and you can’t do a blood test for it. So the whole idea of autism is, in a sense, fiction. But it’s a clinically useful fiction, because once someone is diagnosed, there are certain things they can learn to do. They can join an autistic community that experiences the world in much the same way that they do. Autism may not map out completely to a set of conditions, but its a socially useful construct.
Your book seems to make the case that autism needs to be understood as a broad spectrum encompassing a whole range of different intellectual and behavioral traits. In the context of neurodiversity, this seems to suggest that we ought to stop thinking of the human brain as being in a black or white state of “normal” or “abnormal (aka inferior)”. Do you agree with this?
Absolutely! I think one of the most subversive, but under-appreciatedly subversive arguments that was ever made by a psychologist in the 20th century was from Lorna Wing, who developed the concept of the autism spectrum. She said the autism spectrum “shades imperceptibly into eccentric normality.” In other words, there is no trait that only autistic people have that non-autistic people don’t have. The question is does a person have enough of these traits together for them to have a diagnosis?
People used to come up to me and ask, “well isn’t Mark Zuckerberg autistic?” Well he’s certainly doing well for himself, and I don’t know about his personal life obviously. But I don’t think he needs the resources and support that other people struggling to get by need. In other words, not only is autism not rare — autistic traits are less rare than that. There is no bright line between autism and non-autism. It’s a very subversive concept.
So you have an instance where Jerry Seinfeld watches the “The Curious Incident of the Dog in the Night-Time” on Broadway, and decides he’s on the spectrum. He ended up walking that comment back, but it’s like, well then who isn’t on the spectrum? And the problem with that is that if everybody is on the spectrum, then it’s easy to trivialize the needs that people who facing significant challenges every day have. And we can’t do that.
One of the biggest impediments afflicting autistic individuals are the limits in the ability to communicate or express oneself. What are the ways in which new research or tools have helped to overcome this obstacle? What is the room for progress that still needs to be made?
A lot of autistic kids have found that using the iPad can be both useful and fun. I don’t think the iPad right now can replace an AAC [augmentative and alternative communication] device. We’re not quite there with everyone’s iPad or smartphone suddenly becoming a universal communicator. But we are moving in that direction. And certainly communication is the biggest gift you can give to an autistic person. If they’re having trouble communicating and you enhance their ability to do so, then you can find out what they need, what they love, what their interested in, and support those things.
One of the biggest inventions that have helped autistic people is the internet. It’s like a natural communication medium for someone who finds it difficult to parse facial expressions and make sense of body language in realtime. I have autistic friends who, if they’re in a social situation, seem very uncomfortable. But if they’re in front of a keyboard, they’re incredibly witty and hip and comfortable. So in a sense, what has really helped autistic people — the internet — has helped us all. Now we can all communicate from a distance.
But we’re only just starting to think about how technology will make life better for autistic people. Like, wouldn’t it be great if there was website where parents could compare occupational therapists, with ratings from other parents who have hired those therapists to work with their children?
Could embracing the idea of neurodiversity aid in treating and understanding other kinds of intellectual disorders as well?
Yeah, certainly. The whole concept of neurodiveristy — even though it arose in the autistic community and in fact in an online group for autistic people — it embraces everything from dyslexia to ADHD to many different ways of learning and perceiving the world. It’s just a notion that variations in human cognitive style are not errors in nature that should be fixed. Those conditions can be gifts as well as challenges. And if we can learn how to help people maximize the potential of their gifts while alleviating the challenges they face in daily life, we’ll end up as a stronger society. Great minds, it turns out, do not think alike! They think in many different ways.