The Problematic Obsession With ‘Curing’ Autism

Steve Silberman. Photo: Alex Plank

When the science journalist Steve Silberman started writing the book that would become NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, he and his publisher thought it would take about a year and a half to write. Five years later, the book’s finally out (it was released late last month), and the scope of its 500-plus pages — a whirl of science history and contemporary reporting on autistic people and their families — makes it clear why it took half a decade to write. Autism is a big, messy, complicated subject, especially when you factor in the panic that’s been unleashed by the spread of false notions of a link between the condition and childhood vaccines. But despite the depth of Silberman’s dive into the subject, some very important, very simple — at least in theory — ideas pop out.

Silberman’s interest in the subject was first piqued in 2000, when he realized that a startling number of kids in Silicon Valley were showing signs of autism — something that looked like an “epidemic” was afoot, and people were starting to freak out. His reporting on that phenomenon led to “The Geek Syndrome,” a 2001 article in Wired in which he explained how the concept of assortative mating — basically, people pairing off with those who are similar to them — could help explain what was going on with Silicon Valley’s children. There’s a reason Asperger’s has long been called “the engineer’s disorder” (or disease), after all — people in programming and engineering seem to have these traits more frequently than people in other fields. And if you put a bunch of them together in one place and they start having kids, there’s an explanation for the “epidemic.” 

But that was only the start of Silberman’s research. “As time went on, I began to feel I had blown a much larger story,” he said. Even ten years after the publication of the article, he kept getting emails from families — increasingly, they were concerned not with figuring out what had caused their kids’ autism, but rather what to do now that their kids were “aging out of services.” The problem is that, as Silberman explained, is that “once autistic kids graduate high school, the families are left to twist slowly in the wind and there are very few resources to help the kids translate from school to the workplace.”

As the argument over vaccines grew explosive — it was spurred by a fraudulent 1998 article in The Lancet, which was later retracted — these families were facing a much quieter, less publicized struggle. “The whole world was having this long argument about vaccines but the families and autistic people themselves were dealing with a completely different set of problems,” said Silberman, “which was that there were not enough services and resources for autistic people and their families.”

Their struggles helped inspire him to launch an exploration into autism. When it came to the research scene, he noticed that while there was a never-ending flurry of “breakthroughs” about autism and its possible causes, few of them seemed to actually help families with autistic kids, or autistic people themselves. “We’re pouring millions of dollars into searching for causes of autism in the human genome — and oh boy, are we good at finding candidate genes!” he said. “We’ve found between 600 and 1,000 genes that have been implicated in individual causes of autism. We’ve also found scores of de novo mutations that may play a role in individual cases.” There’s also been a never-ending search for environmental triggers, “and that list gets longer every week … It’s living close to freeways! It’s pesticides! Or it’s something.” As Emily Willingham, herself the mother of an autistic child, wryly put it in a post Silberman mentions in the book, “This Just In … Being Alive Linked to Autism.”

Silberman started to see this sort of focus on causes and cures as missing the point. “I think the idea that there’s going to be a cure ‘just around the corner,’ which is the phrase that gets echoed in media coverage all the time, comes from the mistaken belief that it’s a historical aberration, that autism was very rare before, now it’s very common — something’s changed and we’re going to zero in on that and fix it, and then there won’t be so many autistic people,” he said. “That’s a lie — it’s an illusion.” The traits that define the autism spectrum have always been around, he explained — while it might make for a pat story to suggest that chemicals in our food or evil pharmaceutical companies have led to skyrocketing rates, the available research suggests this isn’t an accurate way to look at it. Rather, NeuroTribes makes the case that a collusion of forces in the 1980s and 1990s produced the skyrocketing rates, including drastically broadened diagnostic criteria, the introduction of easy-to-use clinical tools for autism assessment, and — somewhat entertainingly — Rain Man, which made autism in adults visible to global audiences for the first time. These factors came together in what Silberman calls “an epidemic of recognition.”

The cure-focused conversation about autism has led to speculation about possibly snuffing out the disorder through genetic tweaking or other means, and Silberman is very wary of these ideas.

The chance of flipping a switch in the genome somewhere and making those people go away is probably not practical — and it’s probably not advisable,” he said. That’s because while autism can bring a lot of heartache to those who have it and their families (everything from compulsive self-injurious behaviors to, in the most severe cases, violence directed at others), seems to also be associated with a lot of positive characteristics, like “enhanced pattern-detection abilities, or the ability to focus for long periods of time on subjects of interest,” as Silberman put it. “And so if we flush the autism genes out of the gene pool, through, say, selective abortion — which I’ve heard discussed openly in videos by genomic start-up entrepreneurs,” there’s no way to know what we could be missing out on. “If we start trying to eliminate these conditions, we could really mess up the future of humanity,” he said.

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.” 

Features designed to help disabled people with everyday tasks are known as “reasonable accommodations,” and it’s such an important idea that it has a very specific legal definition. Silberman thinks the concept should be applied to autistic people as well. Education is one example: When I asked him whether the relentless push toward quantifying school performance might be hurting kids who shine in different, harder-to-detect ways, he said he acknowledged that problem, but he was quick to also note a parallel development: A rising number of approaches designed to help autistic kids adapt to educational life are being developed, meaning there’s less of a chance of them being left behind. Sometimes these aids are as simple as devices that help shield kids from being buffeted with too much sensory input; sometimes they’re slightly fancier, like educational tablet apps designed specifically to cater to nontraditional learners’ individual strengths. (In the book, Silberman also highlights events put on by companies trying to be more friendly to families with children on the spectrum, like movies theaters showing versions of films that are made to be a bit less noisy and flashy — he said these events inevitably start out as pilot programs that get mobbed by excited parents and their kids, showing companies there’s real demand for this sort of programming.)

Perhaps Silberman’s simplest, most straightforward idea is that we should listen to autistic people themselves — who are, after all, the people most qualified to talk about what it’s like to grow up and transition into adulthood on the spectrum. For one thing, paying more attention to people with autism would, Silberman argued, “provide young autistic kids with visible role models of successful and creative autistic lives.”

Perhaps just as important, it would give hope to frustrated, scared parents. “If you’d seen Temple Grandin when she was 3 — she was thrown out of a dozen schools, she was self-injurious, she could not talk in the early years of her life,” said Silberman. “You can’t predict the trajectory into middle age of an autistic child on the basis of their behavior when they’re 3 or 4. And many of the people who are now considered ‘high-functioning autistic’ — which is a phrase I don’t like to use because it underestimates their struggle — were presenting with very difficult behavior when they were young. And those people can offer valuable insights into what the experiences of a nonverbal child could be.”

The Problematic Obsession With ‘Curing’ Autism