People often joke about tech-heads being “different”. On TV and on the big screen, engineers, IT people and the like are often portrayed as socially inept, yet brilliant. The truth is, we still know so little about autism and Aspergers. The following excerpt is from Steve Silberman’s new book “Neurotribes”, which explores what it is about Silicon Valley that appeals to those on the spectrum.
To get to the bottom of what was happening in Silicon Valley, I asked Ron Huff of the California Department of Developmental Services to isolate the data from the agency’s regional centers in Santa Clara County from the data in other areas of the state. He confirmed that there was a disproportionately high demand for autism services in the cradle of the technology industry.
By the time I wrote my article, the notion that high-tech hot spots like Silicon Valley and Route 128 outside Boston were havens for brilliant, socially awkward programmers and engineers was becoming a cliché in popular culture. It was a familiar joke in the industry that many hard-core coders in IT strongholds like Intel, Adobe, and Silicon Graphics—coming to work early, leaving late, sucking down Big Gulps in their cubicles—were residing somewhere in Asperger’s domain. Kathryn Stewart, director of the Orion Academy, a high school for autistic kids in Moraga, California, said that she called Asperger’s syndrome “the engineers’ disorder.” In his popular novel Microserfs, Douglas Coupland quipped, “I think all tech people are slightly autistic.”
One possible explanation for a surge of autism in tech-centric communities like the Valley, UCLA neurogeneticist Dan Geschwind suggested to me, was that the culture of these places had opened up social possibilities for men and women on the spectrum that had never before existed in history. A speech-language pathologist named Michelle Garcia Winner told me that many parents in her practice became aware of their own autistic traits only in the wake of their child’s diagnosis.
Temple Grandin observed in Thinking in Pictures, “Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse . . . They are attracted because their intellects work on a similar wavelength.”
Attraction between people with similar genetic traits is called assortative mating. In 1997, cognitive psychologist Simon Baron-Cohen found that the fathers and grandfathers of children with autism were more likely to be engineers. Could assortative mating between men and women carrying the genes for autism be responsible for the rising number of diagnoses in the Valley?
My story exploring that hypothesis, “The Geek Syndrome,” was published in the December issue of Wired in 2001. The world was still reeling from the horror of the attacks on the World Trade Center and the Pentagon on September 11, but e-mails started pouring into my inbox even before the magazine officially hit the newsstands. I heard from parents who said that the article helped them feel less isolated from other parents facing the same challenges with their own children; from clinicians who saw the same dynamic at work in their own high-tech communities; and from readers who had been struggling in social situations for most of their lives without knowing why. This flood of responses was both inspiring and humbling.
"I have a twelve-year-old son. He takes accelerated math and science courses. His hobby is memorizing facts and figures about civil and military aircraft dating back to WWI. He’s always had a fascination with clocks and watches. As you may have guessed, he has Asperger’s syndrome. I’ve always asked myself, “Why is my son the way he is?”
"No one has been able to give me a possible answer until I read your article. You see, my husband is an engineer. After reading your article, it felt like the pieces were falling into place . . .Your article sheds light on my original computer mentor. He could play four games of chess simultaneously and best all four opponents. He always knows what the total cost of the grocery shopping will be, including sales tax, before he enters the checkout line. But his son has trouble making eye contact..."
"When I was five years old, I was taking my electronic toys apart to see how they worked. (I also attempted to put them back together, with mixed results.) I have always been a voracious reader. I was reading college-level physics books bought at garage sales in the second grade. I used to annoy my father to no end wanting to build scale models of nuclear reactors, submarines, trains, anything you could think of. I have only had very small groups of close friends. I always considered that odd but never knew how to go about correcting it. Quite frankly, I find most people quite annoying and illogical—probably another common Asperger trait. :)"
"It is so important that the general public and the hiring companies understand this group of people. Many will fall through the cracks due to their “odd” behaviors. Many have so much to contribute if given the chance."
Thankfully I received only a few e-mails like this one:
"Like many people, I’m starting to get fed up with the multiplication of psychological disorders such as attention deficit disorder and Asperger’s syndrome. In the old days, if you didn’t pay attentionin class, you got whacked, and that usually did the trick for many youngsters."
I also got a call from a supervisor at Microsoft who told me, “All of my top debuggers have Asperger syndrome. They can hold hundreds of lines of code in their head as a visual image. They look for the f laws in the pattern, and that’s where the bugs are.”
At a conference a few months after my article came out, the grandmother of a young girl asked me to sign a copy of my article that had been photocopied so many times that I could barely make out the text.
Years passed, and I still got e-mail about “The Geek Syndrome” nearly every week. As time went on, though, I became convinced that by focusing on the dynamics of autism in one highly specialized community, I had missed a larger and more important story.
“The ultimate hack for a team of Silicon Valley programmers,” I wrote in 2001, “may turn out to be cracking the genetic code that makes them so good at what they do.” The first decade of the new century was a time of hope for many families, as parents told me they felt optimistic that science was on the verge of finally unraveling the mystery of their children’s condition. At the same time, nearly every public discussion of autism was dominated by a rancorous debate about vaccines, based on the controversial findings of a gastroenterologist in England named Andrew Wakefield who claimed to have uncovered a potential link between the measles, mumps, and rubella vaccine (commonly known as the MMR) and a form of regression that he dubbed “autistic enterocolitis.”
Parents seeking advice about raising their newly diagnosed children wandered into a minefield of conflicting information about the safety of routine childhood inoculations and the potential role of heavy metals like mercury (contained in trace amounts in vaccine preservatives like thimerosal) in contributing to their children’s developmental delays. As fears of a vast conspiracy between Big Pharma and corrupt government officials to cover up the effects of a global wave of vaccine injury circulated on the newly emerging Internet, vaccination uptake rates worldwide began to fall, raising the specter of a resurgence of plagues like pertussis that formerly killed tens of thousands of children a year.
The official explanation for the soaring prevalence estimates was that the diagnostic criteria for autism had been gradually broadened over the years. But if that was the case, why were the criteria so inappropriately narrow in the first place? How could a formerly rare and obscure syndrome that was allegedly rooted in genetics suddenly seem to be everywhere at once?
Driven by the public outcry about the rising numbers, autism research— long neglected by funding agencies like the National Institutes of Health (NIH) precisely because the condition was believed to be so rare—was on the threshold of a golden age. Between 2000 and 2011, NIH grants in the field climbed each year by an average of $51 million, including a $1 billion boost in 2006 from the Combating Autism Act. Private funding groups like the Simons Foundation also pitched in, pushing the total investment in autism research to its highest levels in history. In 2011, Autism Speaks, the largest autism fund-raising organization in the world, announced a $50 million team effort with the Beijing Genomics Institute to map the whole genomes of ten thousand individuals from families with two or more au- tistic children. The organization’s vice president of scientific affairs, Andy Shih, promised that the project would generate “a transformative level of information.”
By the end of the decade, it was clear that the scientists had done just what they had been paid to do. Molecular biologists had identified more than a thousand candidate genes and hundreds of de novo mutations associated with autism. They had also come to a greater understanding of epigenetics, the science of factors that mediate interactions between genes and the environment. The list of suspected environmental triggers for autism seemed to grow longer every day, encompassing dozens of chemicals in common use, prompting Forbes science writer Emily Willingham, the mother of an autistic son, to write a blog post with the headline, “This Just In . . . Being Alive Linked to Autism.” Yet for families like Willingham’s, the long-promised transformative moment that would improve the quality of their children’s lives somehow never arrived.
The authors of a major study published in Nature admitted that even the most common genetic factors brought to light in their research were found in less than 1 percent of the children in their sample.
“Most individuals with autism are probably genetically quite unique,” said Stephen Scherer of the Hospital for Sick Children in Toronto. UCLA neurogeneti- cist Stanley Nelson added, “If you had 100 kids with autism, you could have 100 different genetic causes.” A wry saying popular in the autistic community, “If you meet one person with autism, you’ve met one person with autism,” turns out to be true even for molecular biologists.
In 2010, I spoke to one of the fathers I’d interviewed nine years earlier. He told me that he was no longer worrying about what had caused his daughter’s autism. Instead, he was concerned about her future. She was about to “age out” of the modest level of services that the state of California provided to the family. Despite years of behavioral therapy, her skills had not developed to the point where he and his wife felt confident that she would ever be able to live on her own. “The question that keeps me up at night,” he said, “is what will happen to our beloved daughter when we die?”
With the Centers for Disease Control (CDC) currently estimating that one in sixty-eight school-aged children in America are on the autism spectrum, millions of families will be facing sleepless nights in the coming decades. Many autistic adults are not exercising the strengths of their atypical minds at companies like Apple and Google—instead, a disproportionate number are unemployed and struggling to get by on disability payments.
Two decades after the passage of the Individuals with Disabilities Education Act (IDEA), parents still routinely find themselves having to sue their local school boards to obtain an appropriate classroom placement for their son or daughter. Furthermore, very little of the money raised by advocacy organi- zations like Autism Speaks addresses the day-to-day needs of autistic people and their families. By focusing primarily on funding searches for potential causes and risk factors, these organizations reinforce the idea that autism is a historical anomaly—a distinctive problem of modern times that could be solved by a discovery that seems perpetually just around the corner.
As the mainstream world had a long argument about vaccines, newly diagnosed adults were engaged in a very different conversation about the difficulties of navigating and surviving in a world not built for them. By sharing the stories of their lives, they discovered that many of the challenges they face daily are not “symptoms” of their autism, but hardships imposed by a society that refuses to make basic accommodations for peo- ple with cognitive disabilities as it does for people with physical disabilities such as blindness and deafness.
A seemingly simple question began to formulate in my mind: After seventy years of research on autism, why do we still seem to know so little about it?
This is an extract from Neurotribes by Steve Silberman. You can purchase a copy here.