Neurotribes is an ambitious book. It is, as Oliver Sacks describes it in the foreword, “a sweeping and penetrating history of [autism, Asperger’s syndrome and how those diagnoses are understood]. Grappling with such a sweeping topic is a challenge, especially when it is subject to public controversy. How does a science writer deal with readers whose fears have led them to discount science (as is the case with those who claim vaccines have caused an autism “epidemic”)?
For author Steve Silberman, what started out as a magazine article ultimately led to a five-year project that resulted in NeuroTribes – the first book about science to win the UK’s Samuel Johnson prize for non-fiction.
Silberman has done dozens of interviews since the release of NeuroTribes in 2015 – like this one or this one – but I wanted to talk with him specifically about science communication and how he was able to turn an unwieldy mass of information into a coherent, cohesive narrative.
Communication Breakdown: In your introduction to NeuroTribes, you write about a series of events that led you to write an article for Wired in December 2001, titled “The Geek Syndrome.” That article, in turn, led to an outpouring of feedback from readers. Clearly, autism was a subject that struck a chord in the public consciousness, but what made it a subject that you wanted to throw yourself into?
Steve Silberman: As I explain in the introduction to the book, I was disturbed by the disjunction between the challenges that autistic people and their families were writing to me about –– basic day-to-day problems like having to sit on waiting lists for months for a child to get a diagnosis, and then being unable to find housing, health care, education, and employment –– and what the whole world was arguing about, which was whether or not vaccines cause autism. The anti-vaccine movement sucked all the oxygen out of the room; virtually every other consideration about how society could do better in supporting autistic people and their families was swept off the table.
Meanwhile, whenever the subject of the rising number of autism diagnoses came up in the media, it was always referred to as a mystery or a baffling enigma. I started to wonder why it was so mysterious, particularly as this enigma began to dictate not only the public discourse on autism, but the federal research agenda. I felt that, somewhere along the line, the understanding of history by autism experts had radically diverged from the understanding of history by many autism parents. I began to wonder how, and precisely when, that had happened. It haunted me for years before I finally sat down and wrote a book proposal.
CB: At what point did you realize that you were doing research for a book, rather than doing reporting for another magazine article or series of articles?
Silberman: Immediately after “The Geek Syndrome” came out in 2001, several literary agents contacted me and asked me if I was interested in writing a book. I didn’t take them up on their offers for two reasons: I loved my job at Wired, which allowed me to immerse myself in many different subjects in rapid succession, and I felt it was too early for such a book. I wasn’t confident that the theory of assortative mating that I explored in the article could explain anything more than an uptick in autism rates in certain very specialized high-tech communities. But I opened a file on my computer to salt away news articles and other items of interest in case I ever did write a book. That file is now 13 gigabytes, mostly text –– which is a lot of text. So, the idea of writing a book was always in the back of my mind, even as I wrote articles on other subjects for Wired.
CB: You gave up a steady journalism gig to pursue the book full time. Were there other ways that realizing this would be a book changed the way you went about doing your research and reporting?
Silberman: To be honest, one of the reasons I was willing to take a hiatus from Wired was that magazine journalism itself was becoming much less secure and steady as an occupation. We didn’t really have staff writers at Wired, but for more than a decade, I was a contract writer there, which meant that I got a paycheck every month as long as I turned in a certain number of stories. It was more or less my dream job: I was able to make a living by talking to the smartest people in the world and probing fascinating questions like why the placebo effect seems to be increasing in clinical trials. But ironically, just a few days before my placebo story won the science journalism of the year award from the Kavli Foundation, Wired decided not to re-up my contract with no explanation, though I was invited to pitch stories. At the age of 50, I found myself a freelancer again.
This kind of thing is happening industry-wide. The notion that writing award–winning stories assures you of a permanent spot on a masthead is outdated. I realized I would really have to aggressively take charge of my own career rather than relying on any particular publication to provide me with a lasting home. And right at that moment, I got a call from a literary agent who had read my story on the placebo effect and asked me if I wanted to write a book about it. I told her that I appreciated her interest, but there was actually this other book I’d been thinking about writing for about ten years… So that’s how my long-incubating idea finally became a book.
CB: The book offers an in-depth overview of the history of autism. You include profiles of famous historical figures who would appear to be autistic, you tell the stories behind the “discovery” of autism and how it was diagnosed (variously) by Leo Kanner, Hans Asperger, and Lorna Wing (among others). When you first began working on this project, how did you decide where to start?
Silberman: First of all, I had no idea that NeuroTribes would take me more than five years to write, and neither did my publisher. I have some very prolific book–writing friends who were all like, “A year and a half at most, dude, no sweat!” But autism is a very tricky subject to write about sensitively, and a lot of the historical information that I ended up uncovering had been forgotten over the years –– and in some cases, it had been deliberately buried. I had to hire a team of people to translate papers from the German, and basically turned my apartment into a live–in library of out–of–print autism books, in addition to all the studies I downloaded into that enormous folder. I also spent nearly a month in England interviewing people like psychiatrist Lorna Wing (the mother of the spectrum model of autism), psychologist Uta Frith (who first made Hans Asperger’s original 1944 paper widely available in English), and Adam Feinstein (author of A History of Autism: Conversations with the Pioneers.) I also spent nearly a week with about 70 autistic people of all ages and levels of ability at an event called Autreat. And that was just the beginning.
Eventually I realized that the standard timeline of autism history, as it is laid out in thousands of textbooks and Wikipedia, was wrong –– and that if you understood the correct timeline, the startling spike in diagnoses that began with Lorna’s introduction of the spectrum model in the late 1980s and early 1990s was much more comprehensible. That realization made it very important for me to tell the whole tale accurately in terms that lay people could understand, because pervasive misconceptions about autism history were having a terrible effect on society. Vaccination uptake rates were falling worldwide, creating a resurgence of potentially fatal childhood diseases like measles and pertussis.
Furthermore, the notion that an “autism epidemic” was underway –– reiterated constantly by major fundraising organizations like Autism Speaks –– understandably terrified parents, and resulted in a skewed research agenda that totally ignored the fate of autistic adults. I began to feel like I was watching a tragedy unfold on a global scale, and at the root of it was this lost history that I was slowly piecing together, as months and years were going by. It was a very intense feeling.
CB: Once you started absorbing all of this information, you had to organize it into a narrative that makes sense, and that propels the reader through page after page. Did you have a specific approach in mind as you set out to tie all of these narrative threads into a single, coherent story?
Silberman: I wish I could tell you that I had it all mapped out in a detailed outline, with threads and sub–threads all carefully calculated, before I even started writing. But it’s not true. The narrative grew organically as I learned more information and saw through–lines extending through the decades. There were certain scenes –– particularly Andrew Wakefield’s press conference announcing the release of his now infamous, debunked and retracted Lancet paper on the MMR vaccine –– that I knew had to be in the book, but I could never decide where to put them.
What’s funny is, despite the fact that I’ve read a couple of comments online complaining about the “back and forth” structure of the book, other than chapter two, the narrative is pretty much just straightforward chronology. If I’d had, oh, ten years to write the book, I might have tried to pull off a more artistically ambitious structure. But I didn’t. The whole time I was writing NeuroTribes, I was racing to make deadlines that I couldn’t possibly make. For the first time in my life, I would wake up in the middle of the night having panic attacks –– for weeks on end.
CB: How do you know when enough is enough? I mean, you want to make sure that readers understand what you’re discussing before moving on to the next step in the story – so, how do you know when you’ve told enough of the backstory to move forward (without writing an encyclopedia)?
Silberman: Well, the book was originally contracted to be 200 pages long. I handed it in at 800, and my very patient editor at Avery Books, Megan Newman, wisely told me I had to cut it back to about 500 pages or no one would read it. She was right. At 800, even I was exhausted by the time I reached the end. But most of the decisions about when the reader had been given enough information to not just understand the history, but feel it emotionally, were completely intuitive. I like to think I can feel those moments when the reader is like “enough already”!
CB: NeuroTribes weaves together historical research and your first–person reporting, incorporating the stories of individual people into your overarching narrative. Why do you think these personal stories – not only of people with autism, but of people who studied autism – are important?
Silberman: We tend to think of science as this disembodied pursuit of pure data, but it’s not true. The progress of science, like any other human activity, is shaped by the personalities of scientists and the social forces at work in the particular time and place where the research is unfolding. The more I thought about it, the more it struck me as absolutely bizarre that thousands of books had been written about Asperger’s syndrome while never taking a closer look at who Asperger was and the historical context of his work, which was Nazi–era Vienna. My decision to pull the camera back, figuratively speaking, and show what was going on around Asperger as he and his colleagues did this amazingly prescient work with kids that society had rejected, became especially significant once I realized that Asperger had emphasized the “most promising cases” in his care to save them from being exterminated by his bosses. This, in turn, had given rise to the notion that he had only seen so–called high–functioning children in his clinic, which became the foundation for Lorna Wing’s conception of the Asperger syndrome diagnosis. In other words, if you didn’t know that Asperger was working for Nazis, you couldn’t really understand how that diagnosis came to be.
Similarly, Leo Kanner’s ambitions to launch child psychiatry as a viable specialty in America influenced his decision to start blaming “refrigerator” parents for triggering autism in their children, which had catastrophic effects on two generations of autistic people and their families. I realized that the whole field of autism research had been shaped by the personalities of the people who created it – their hopes, their ambitions, their compromises, and their blind spots –– and by these huge historical forces grinding away in the background.
CB: Conventional wisdom is for writers to “kill their darlings” – but that would make for pretty dry reading. How did you decide which darlings to kill (and which to leave in)? I.e., how did you decide how much of a person’s backstory to incorporate into the final version of the book? Were there any stories that were particularly painful to leave on the cutting room floor?
Silberman: The first several chapters were pretty much published as written, though they had been reworked and revised hundreds of times. Most of the 300 pages I had to cut came from the final chapters, as suggested by my editor. Though I am certain she was right about that, cutting out a lot of stories from the modern era had a very unfortunate unintended effect. Because people of color were often locked out of getting an autism diagnosis until the modern era, the book ended up underrepresenting them, because part of my original plan for the book was to show how much more diverse the autism community became in recent years. But because all of these decisions had to be made very quickly as my final, final, final deadline approached – the Point of No Return, when the whole publishing machine was awaiting my manuscript – I couldn’t go back and do more research on autistic people of color in the 1950s and 1960s.
Believe me, it’s not that I simply overlooked them. It’s that my desire to render a diverse picture of the autism community came crashing into a totally inflexible final deadline and the need to cut the book by nearly a third of its length at the very last minute. That whole final edit had to go down in about two weeks, when I was already exhausted from the previous five years. I was also in terrible shape from having spent all that time at my desk and not sleeping well; in fact, I had a very severe case of undiagnosed diabetes, which I didn’t find out until shortly after the manuscript was filed. Writing the book nearly killed me.
CB: NeuroTribes really has two endings. The final chapter closes with a broad view of the challenges ahead, and something of a call to arms on how we, as a society, might best address those challenges. The epilogue offers a hopeful note, offering readers a glimpse into the life of Mark Rimland – a man with autism who lives a fulfilling life and is “completely at home on Earth.” I have two questions here. First, given the constantly evolving public discussion – research–driven and otherwise – surrounding autism, there would always be one more thing to add to the book. So, how did you decide what would constitute the end of the book? Did you have the end in mind long before you finished writing the book?
Silberman: I wrote the very end of the book, with Mark Rimland happily living his life in Kensington, long before I wrote the last half of the book. It became a sort of pole star that guided my journey through the last chapters. It just felt like the right ending, because it emphasized how important it is that Mark lives in a supportive community, among people who appreciate him for who he is, his eccentricities included –– though his father Bernie was never able to “cure” him of his autism as he so earnestly hoped to do. This is the lesson that autism parents have been learning for generations, coming to peace with the fact that their children will always be autistic, and getting down to the really hard work of building a better world for them. It’s because of parents doing this work in previous generations that all children –– including those with many different forms of disability –– have a legal right to an education in America.
CB: What were your biggest surprises as you worked on the book? Were they things you learned about yourself, about the process of writing, or about the subject you were writing about?
Silberman: The biggest scoop in my book for autism historians is that the nearly simultaneous discoveries of autism by Hans Asperger and Leo Kanner in Vienna and Baltimore –– long believed to be completely independent –– were anything but coincidental. In 1938, when Kanner saw his first autistic patient, Donald Triplett, he didn’t know what to make of him at first, so he sent him to see a guy whom Kanner had just rescued from the impending Holocaust: Georg Frankl, who had been Asperger’s chief diagnostician in Vienna. Not only that, but another member of Asperger’s core team, a very insightful and observant psychologist named Anni Weiss, was also in Kanner’s social circle when he “discovered” autism.
This was such a bombshell that when I discovered it by following a long chain of footnotes through documents in English and German, I almost keeled over. How could no one have figured this out before? Then it occurred to me that Georg Frankl might be a very common name, and lo and behold, there turned out to be another psychologist by that name who became quite well known. But I finally tracked down Frankl’s personnel file at Johns Hopkins, and there it was: ten years at the Children’s Clinic at the University of Vienna. He would go on to do “public clinics” with Kanner, where parents brought their kids to be evaluated. This discovery had a huge effect on the rest of the narrative, because Kanner had always claimed to have discovered autism by “serendipity.” He also never acknowledged the influence of Asperger’s work in his own work on autism, and in fact, only mentioned it once, in an obscure book review in the 1970s, dismissively. This made Kanner’s character much more nuanced and complicated.
The biggest discovery I made about myself was that I was capable of completing a writing project that turned out to be much more difficult, time-consuming, labor-intensive, and emotionally fraught than I ever imagined –– and that it would reach a lot of readers in just the ways I hoped. I feel like I “moved the world a millionth of an inch,” as the poet Gary Snyder put it. At my age, when my career could be sort of petering out, that’s gratifying.
CB: Last question: what do you feel has been the most rewarding aspect of your work on NeuroTribes?
Silberman: Meeting young parents of autistic kids who tell me that my book has given them a sense of permission to love their children exactly as they are, rather than seeing them as damaged goods, failed versions of normal that have to be fixed. Particularly within the autism context, that’s a powerful thing, because parents have been told over and over, for decades, that unless they try to “cure” their children, they’re not working hard enough, they’re not making enough sacrifices. In fact, what really needs curing is society’s misconceptions about autistic people, and the stigma that’s laid on them. By now, I have a lot of autistic friends –– that’s the other most rewarding aspect of having written my book. I was deeply honored on the day my book was published, when I gave a reading at my local bookstore, the Booksmith, and I saw a bunch of autistic adults in the audience rocking, stimming, chatting, and doing their thing. That made me feel really good.