Autism – and its milder cousin Asperger’s syndrome – is surging among the children of Silicon Valley. Are math-and-tech genes to blame?
AUTHOR: STEVE SILBERMAN MAGAZINE. DATE OF PUBLICATION: 12.01.01.
The following is a summarized version of The Geek Syndrome article on WIRED highlighting invaluable information about Autism/Asperger’s syndrome–the great work it takes yet extremely rewarding potential that such work can bring–depicted in children of Silicon Valley. You can read the full article at https://www.wired.com/2001/12/aspergers/
Nick is building a universe on his computer. He’s already mapped out his first planet: an anvil-shaped world called Denthaim that is home to gnomes and gods, along with a three-gendered race known as kiman. As he tells me about his universe, Nick looks up at the ceiling, humming fragments of a melody over and over. “I’m thinking of making magic a form of quantum physics, but I haven’t decided yet, actually,” he explains. The music of his speech is pitched high, alternately poetic and pedantic – as if the soul of an Oxford don has been awkwardly reincarnated in the body of a chubby, rosy-cheeked boy from Silicon Valley. Nick is 11 years old.
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Nick’s father is a software engineer, and his mother is a computer programmer. They’ve known that Nick was an unusual child for a long time. He’s infatuated with fantasy novels, but he has a hard time reading people. Clearly bright and imaginative, he has no friends his own age. His inability to pick up on hidden agendas makes him easy prey to certain cruelties, as when some kids paid him a few dollars to wear a ridiculous outfit to school.
One therapist suggested that Nick was suffering from an anxiety disorder. Another said he had a speech impediment. Then his mother read a book called Asperger’s Syndrome: A Guide for Parents and Professionals. In it, psychologist Tony Attwood describes children who lack basic social and motor skills, seem unable to decode body language and sense the feelings of others, avoid eye contact, and frequently launch into monologues about narrowly defined – and often highly technical – interests. Even when very young, these children become obsessed with order, arranging their toys in a regimented fashion on the floor and flying into tantrums when their routines are disturbed. As teenagers, they’re prone to getting into trouble with teachers and other figures of authority, partly because the subtle cues that define societal hierarchies are invisible to them.
“I thought, ‘That’s Nick,'” his mother recalls.
Asperger’s syndrome is one of the disorders on the autistic spectrum – a milder form of the condition that afflicted Raymond Babbitt, the character played by Dustin Hoffman in Rain Man. In the taxonomy of autism, those with Asperger’s syndrome have average – or even very high – IQs, while 70 percent of those with other autistic disorders suffer from mild to severe mental retardation. One of the estimated 450,000 people in the US living with autism, Nick is more fortunate than most. He can read, write, and speak. He’ll be able to live and work on his own. Once he gets out of junior high hell, it’s not hard to imagine Nick creating a niche for himself in all his exuberant strangeness. At the less fortunate end of the spectrum are what diagnosticians call “profoundly affected” children. If not forcibly engaged, these children spend their waking hours in trancelike states, staring at lights, rocking, making high-pitched squeaks, and flapping their hands, repetitively stimulating (“stimming”) their miswired nervous systems.
In one of the uncanny synchronicities of science, autism was first recognized on two continents nearly simultaneously. In 1943, a child psychiatrist named Leo Kanner published a monograph outlining a curious set of behaviors he noticed in 11 children at the Johns Hopkins Hospital in Baltimore. A year later, a pediatrician in Vienna named Hans Asperger, who had never seen Kanner’s work, published a paper describing four children who shared many of the same traits. Both Kanner and Asperger gave the condition the same name: autism – from the Greek word for self, autòs – because the children in their care seemed to withdraw into iron-walled universes of their own.
Kanner went on to launch the field of child psychiatry in the US, while Asperger’s clinic was destroyed by a shower of Allied bombs. Over the next 40 years, Kanner became widely known as the author of the canonical textbook in his field, in which he classified autism as a subset of childhood schizophrenia. Asperger was virtually ignored outside of Europe and died in 1980. The term Asperger syndrome wasn’t coined until a year later, by UK psychologist Lorna Wing, and Asperger’s original paper wasn’t even translated into English until 1991. Wing built upon Asperger’s intuition that even certain gifted children might also be autistic. She described the disorder as a continuum that “ranges from the most profoundly physically and mentally retarded person … to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality.”
Asperger’s notion of a continuum that embraces both smart, geeky kids like Nick and those with so-called classic or profound autism has been accepted by the medical establishment only in the last decade. Like most distinctions in the world of childhood developmental disorders, the line between classic autism and Asperger’s syndrome is hazy, shifting with the state of diagnostic opinion. Autism was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders in 1980, but Asperger’s syndrome wasn’t included as a separate disorder until the fourth edition in 1994. The taxonomy is further complicated by the fact that few if any people who have Asperger’s syndrome will exhibit all of the behaviors listed in the DSM-IV. (The syn in syndrome derives from the same root as the syn in synchronicity – the word means that certain symptoms tend to cluster together, but all need not be present to make the diagnosis.) Though Asperger’s syndrome is less disabling than “low-functioning” forms of autism, kids who have it suffer difficulties in the same areas as classically autistic children do: social interactions, motor skills, sensory processing, and a tendency toward repetitive behavior.
In the last 20 years, significant advances have been made in developing methods of behavioral training that help autistic children find ways to communicate. These techniques, however, require prodigious amounts of persistence, time, money, and love. Though more than half a century has passed since Kanner and Asperger first gave a name to autism, there is still no known cause, no miracle drug, and no cure….
….Controversies rage about whether environmental factors – such as mercury and other chemicals in universally administered vaccines, industrial pollutants in air and water, and even certain foods – act as catalysts that trigger the disorder.
The one thing that almost all researchers in the field agree on is that genetic predisposition plays a crucial role in laying the neurological foundations of autism in most cases. Studies have shown that if one identical twin is autistic, there’s a 90 percent chance that the other twin will also have the disorder. If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20. After two children with the disorder, the sobering odds are 1 in 3. (So many parents refrain from having more offspring after one autistic child, geneticists even have a term for it: stoppage.) The chances that the siblings of an autistic child will display one or more of the other developmental disorders with a known genetic basis – such as dyslexia or Tourette’s syndrome – are also significantly higher than normal.
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Autism’s insidious style of onset is particularly cruel to parents, because for the first two years of life, nothing seems to be wrong. Their child is engaged with the world, progressing normally, taking first steps into language. Then, suddenly, some unknown cascade of neurological events washes it all away.
One father of an autistic child, Jonathan Shestack, describes what happened to his son, Dov, as “watching our sweet, beautiful boy disappear in front of our eyes.” At two, Dov’s first words – Mom, Dad, flower, park – abruptly retreated into silence. Over the next six months, Dov ceased to recognize his own name and the faces of his parents. It took Dov a year of intensive behavioral therapy to learn how to point. At age 9, after the most effective interventions available (such as the step-by-step behavioral training methods developed by Ivar Lovaas at UCLA), Dov can speak 20 words.
Even children who make significant progress require levels of day-to-day attention from their families that can best be described as heroic. Marnin Kligfeld is the founder of a software mergers-and-acquisitions firm. His wife, Margo Estrin, a doctor of internal medicine, is the daughter of Gerald Estrin, who was a mentor to many of the original architects of the Internet (see “Meet the Bellbusters,” Wired 9.11, page 164). When their daughter, Leah, was 3, a pediatrician at Oakland Children’s Hospital looked at her on the examining table and declared, “There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future.” After eight years of interventions – behavioral training, occupational therapy, speech therapy – Leah is a happy, upbeat 11-year-old who downloads her favorite songs by the hundreds. And she is still deeply autistic.
Leah’s first visit to the dentist required weeks of preparation, because autistic people are made deeply anxious by any change in routine. “We took pictures of the dentist’s office and the staff, and drove Leah past the office several times,” Kligfeld recalls. “Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have Leah sit in the chair. The second session was so Leah could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so Leah could see exactly what was being done, to ensure that there were no surprises.”
Clumsy and easily overwhelmed in the physical world, autistic minds soar in the virtual realms of mathematics, symbols, and code. Asperger compared the children in his clinic to calculating machines: “intelligent automata” – a metaphor employed by many autistic people themselves to describe their own rule-based, image-driven thought processes. In her autobiography, Thinking in Pictures, Grandin compares her mind to a VCR. When she hears the word dog, she mentally replays what she calls “videotapes” of various dogs that she’s seen, to arrive at something close to the average person’s abstract notion of the category that includes all dogs. This visual concreteness has been a boon to her work as a designer of more humane machinery for handling livestock. Grandin sees the machines in her head and sets them running, debugging as she goes. When the design in her mind does everything it’s supposed to, she draws a blueprint of what she sees.
It’s a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics – coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours – are residing somewhere in Asperger’s domain. Kathryn Stewart, director of the Orion Academy, a high school for high-functioning kids in Moraga, California, calls Asperger’s syndrome “the engineers’ disorder.” Bill Gates is regularly diagnosed in the press: His single-minded focus on technical minutiae, rocking motions, and flat tone of voice are all suggestive of an adult with some trace of the disorder. Dov’s father told me that his friends in the Valley say many of their coworkers “could be diagnosed with ODD – they’re odd.” In Microserfs, novelist Douglas Coupland observes, “I think all tech people are slightly autistic.”
The halls of academe have long been a forgiving environment for absentminded professors. Temple Grandin – the inspiring and accomplished autistic woman profiled in Oliver Sacks’ An Anthropologist on Mars – calls NASA the largest sheltered workshop in the world.