Steve Silberman reports from San jose that the chilling possibility
exists that what's happening now is the first proof
that the genes responsible for bestowing certain special gifts on
slightly autistic adults - the very abilities that have made them
dreamers and architects of our technological future - are capable of
bringing a plague down on the best minds of the next generation. For
parents employed in prominent IT firms here, the news of increased
diagnoses of autism in their ranks is a confirmation of rumors that have
quietly circulated for months. Every day, more and more of their
coworkers are running into one another in the waiting rooms of local
clinics, taking the first uncertain steps on a journey with their
children that lasts for the rest of their lives.
Kelly
W I R E D
Archive | 9.12 - Dec 2001 | Feature
The Geek Syndrome
Autism - and its milder cousin Asperger's syndrome - is surging among
the children of Silicon Valley. Are math-and-tech genes to blame?
By Steve Silberman
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.
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, autňs - 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.
And now, something dark and unsettling is happening in Silicon Valley.
In the past decade, there has been a significant surge in the number of
kids diagnosed with autism throughout California. In August 1993, there
were 4,911 cases of so-called level-one autism logged in the state's
Department of Developmental Services client-management system. This
figure doesn't include kids with Asperger's syndrome, like Nick, but
only those who have received a diagnosis of classic autism. In the
mid-'90s, this caseload started spiraling up. In 1999, the number of
clients was more than double what it had been six years earlier. Then
the curve started spiking. By July 2001, there were 15,441 clients in
the DDS database. Now there are more than seven new cases of level-one
autism - 85 percent of them children - entering the system every day.
Through the '90s, cases tripled in California. "Anyone who says this is
due to better diagnostics has his head in the sand."
California is not alone. Rates of both classic autism and Asperger's
syndrome are going up all over the world, which is certainly cause for
alarm and for the urgent mobilization of research. Autism was once
considered a very rare disorder, occurring in one out of every 10,000
births. Now it's understood to be much more common - perhaps 20 times
more. But according to local authorities, the picture in California is
particularly bleak in Santa Clara County. Here in Silicon Valley, family
support services provided by the DDS are brokered by the San Andreas
Regional Center, one of 21 such centers in the state. SARC dispenses
desperately needed resources (such as in-home behavioral training,
educational aides, and respite care) to families in four counties. While
the autistic caseload is rising in all four, the percentage of cases of
classic autism among the total client population in Santa Clara County
is higher enough to be worrisome, says SARC's director, Santi Rogers.
"There's a significant difference, and no signs that it's abating," says
Rogers. "We've been watching these numbers for years. We feared that
something like this was coming. But this is a burst that has staggered
us in our steps."
It's not easy to arrive at a clear picture of whether there actually is
a startling rise in the incidence of autism in California, as opposed to
just an increase in diagnoses. One problem, says Linda Lotspeich,
director of the Stanford Pervasive Developmental Disorders Clinic, is
that "the rules in the DSM-IV don't work." The diagnostic criteria are
subjective, like "Marked impairment in the use of nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and gestures
to regulate social interaction."
"How much 'eye-to-eye gaze' do you have to have to be normal?" asks
Lotspeich. "How do you define what 'marked' is? In shades of gray, when
does black become white?"
Some children will receive a diagnosis of classic autism, and another
diagnosis of Asperger's syndrome, from two different clinicians. Tony
Attwood's advice to parents is strictly practical: "Use the diagnosis
that provides the services."
While diagnostic fuzziness may be contributing to a pervasive sense that
autism is on the rise, Ron Huff, the consulting psychologist for the DDS
who uncovered the statistical trend, does not believe that all we're
seeing now is an increase in children who would have previously been
tagged with some other disability, such as mental retardation - or
overlooked as perfectly healthy, if quirky, kids.
"While we certainly need to do more research," says Huff, "I don't think
the change in diagnostic criteria will account for all of this rise by
any means."
The department is making its data available to the MIND Institute at the
University of California at Davis, to tease out what's behind the
numbers. The results of that research will be published next year. But
the effects of a surging influx are already rippling through the local
schools. Carol Zepecki, director of student services and special
education for the Palo Alto Unified School District, is disturbed by
what she's seeing. "To be honest with you, as I look back on the
special-ed students I've worked with for 20 years, it's clear to me that
these kids would not have been placed in another category. The numbers
are definitely higher." Elizabeth Rochin, a special-ed teacher at
Cupertino High, says local educators are scrambling to create new
resources. "We know it's happening, because they're coming through our
schools. Our director saw the iceberg approaching and said, 'We've got
to build something for them.'"
The people scrambling hardest are parents. In-home therapy alone can
cost $60,000 or more a year, and requires so much dedication that
parents (particularly mothers) are often forced to quit their jobs and
make managing a team of specialists their new 80-hour-a-week career.
Before their children become eligible for state funding, parents must
obtain a diagnosis from a qualified clinician, which requires hours of
testing and observation. Local facilities, such as the Stanford
Pervasive Development Disorders Clinic and its counterpart at UC San
Francisco, are swamped. The Stanford clinic is able to perform only two
or three diagnoses a week. It currently has a two- to six-month waiting
list.
For Rick Rollens, former secretary of the California Senate and
cofounder of the MIND Institute, the notion that there is a frightening
increase in autism worldwide is no longer in question. "Anyone who says
this epidemic is due to better diagnostics," he says, "has his head in
the sand."
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."
Daily ordeals like this, common in the autistic community, underline the
folly of the hypothesis that prevailed among psychologists 20 years ago,
who were convinced that autism was caused by a lack of parental
affection. The influential psychiatrist Bruno Bettelheim aggressively
promoted a theory that has come to be known as the "refrigerator mother"
hypothesis. He declared in his best-selling book, The Empty Fortress,
"The precipitating factor in infantile autism is the parent's wish that
his child should not exist. ... To this the child responds with massive
withdrawal." He prescribed "parentectomy" - removal of the child from
the parents - and years of family therapy. His hypothesis added the
burden of guilt to the grief of having an autistic child, and made
autism a source of shame and secrecy, which hampered efforts to obtain
clinical data. The hypothesis has been thoroughly discredited. Richard
Pollak's The Creation of Dr. B exposed Bettelheim as a brilliant liar
who concocted case histories and exaggerated both his experience with
autistic children and the success of his treatments.
One thing nearly everyone in the field agrees on: genetic
predisposition. Identical twins share the disorder 9 times out of 10.
But the debates about the causes of autism are certainly not over.
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. Bernard Rimland, the first psychologist to
oppose Bettelheim and promote the idea that autism was organic in
origin, has become a leading advocate for intensified investigation in
this area. The father of an autistic son, Rimland has been instrumental
in marshaling medical expertise and family data to create better
assessment protocols.
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.
The bad news from Santa Clara County raises an inescapable question.
Unless the genetic hypothesis is proven false, which is unlikely,
regions with a higher than normal distribution of people on the autistic
spectrum are something no researcher could ask for: living laboratories
for the study of genetic expression. When the rain that fell on the Rain
Man falls harder on certain communities than others, what becomes of the
children?
The answer may be raining all over Silicon Valley. And one of the best
hopes of finding a cure may be locked in the DNA sequences that produced
the minds that have made this area the technological powerhouse of the
world.
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."
Though no one has tried to convince the Valley's best and brightest to
sign up for batteries of tests, the culture of the area has subtly
evolved to meet the social needs of adults in high-functioning regions
of the spectrum. In the geek warrens of engineering and R&D, social
graces are beside the point. You can be as off-the-wall as you want to
be, but if your code is bulletproof, no one's going to point out that
you've been wearing the same shirt for two weeks. Autistic people have a
hard time multitasking - particularly when one of the channels is
face-to-face communication. Replacing the hubbub of the traditional
office with a screen and an email address inserts a controllable
interface between a programmer and the chaos of everyday life. Flattened
workplace hierarchies are more comfortable for those who find it hard to
read social cues. A WYSIWYG world, where respect and rewards are based
strictly on merit, is an Asperger's dream.
Obviously, this kind of accommodation is not unique to the Valley. 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.
A recurring theme in case histories of autism, going all the way back to
Kanner's and Asperger's original monographs, is an attraction to highly
organized systems and complex machines. There's even a perennial cast of
hackers: early adopters with a subversive streak. In 1944, Asperger
wrote of a boy "chemist [who] uses all his money for experiments which
often horrify his family and even steals to fund them." Another boy
proved a mathematical error in Isaac Newton's calculations while he was
still a freshman in college. A third escaped neighborhood bullies by
taking lessons from an old watchmaker. And a fourth, wrote Asperger,
"came to be preoccupied with fantastic inventions, such as spaceships
and the like." Here he added, "one observes how remote from reality
autistic interests really are" - a comment he qualified years later,
when spaceships were no longer remote or fantastic, by joking that the
inventors of spaceships might themselves be autistic.
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.
"In another age, these men would have been monks, developing new ink for
printing presses. Suddenly, they're reproducing at a much higher rate."
These days, the autistic fascinations with technology, ordered systems,
visual modes of thinking, and subversive creativity have plenty of
outlets. There's even a cheeky Asperger's term for the rest of us - NTs,
"neurotypicals." Many children on the spectrum become obsessed with
VCRs, Pokémon, and computer games, working the joysticks until blisters
appear on their fingers. (In the diagnostic lexicon, this kind of
relentless behavior is called "perseveration.") Even when playing
alongside someone their own age, however, autistic kids tend to play
separately. Echoing Asperger, the director of the clinic in San Jose
where I met Nick, Michelle Garcia Winner, suggests that "Pokémon must
have been invented by a team of Japanese engineers with Asperger."
Attwood writes that computers "are an ideal interest for a person with
Asperger's syndrome ... they are logical, consistent, and not prone to
moods."
This affinity for computers gives teachers and parents leverage they can
use to build on the natural strengths of autistic children. Many
teenagers who lack the motor skills to write by hand find it easier to
use a keyboard. At Orion Academy, every student is required to buy an
iBook fitted with an AirPort card. Class notes are written on electronic
whiteboards that port the instructional materials to the school server
for retrieval. (At lunch, the iBooks are shut off, and if the kids want
to play a two-person game, they're directed to a chess board.) The next
generation of assistive technology is being designed by Neil Scott's
Archimedes Project at Stanford. Scott's team is currently developing the
equivalent of a PDA for autistic kids, able to parse subtle movements of
an eyebrow or fingertip into streams of text, voice, or images. The
devices will incorporate video cameras, head and eye tracking,
intelligent agents, and speech recognition to suit the needs of the
individual child.
The Valley is a self-selecting community where passionately bright
people migrate from all over the world to make smart machines work
smarter. The nuts-and-bolts practicality of hard labor among the bits
appeals to the predilections of the high-functioning autistic mind. The
hidden cost of building enclaves like this, however, may be lurking in
the findings of nearly every major genetic study of autism in the last
10 years. Over and over again, researchers have concluded that the DNA
scripts for autism are probably passed down not only by relatives who
are classically autistic, but by those who display only a few typically
autistic behaviors. (Geneticists call those who don't fit into the
diagnostic pigeonholes "broad autistic phenotypes.")
The chilling possibility is that what's happening now is the first proof
that the genes responsible for bestowing certain special gifts on
slightly autistic adults - the very abilities that have made them
dreamers and architects of our technological future - are capable of
bringing a plague down on the best minds of the next generation. For
parents employed in prominent IT firms here, the news of increased
diagnoses of autism in their ranks is a confirmation of rumors that have
quietly circulated for months. Every day, more and more of their
coworkers are running into one another in the waiting rooms of local
clinics, taking the first uncertain steps on a journey with their
children that lasts for the rest of their lives.
In previous eras, even those who recognized early that autism might have
a genetic underpinning considered it a disorder that only moved
diagonally down branches of a family tree. Direct inheritance was almost
out of the question, because autistic people rarely had children. The
profoundly affected spent their lives in institutions, and those with
Asperger's syndrome tended to be loners. They were the strange uncle who
droned on in a tuneless voice, tending his private logs of baseball
statistics or military arcana; the cousin who never married, celibate by
choice, fussy about the arrangement of her things, who spoke in a
lexicon mined reading dictionaries cover to cover.
The old line "insanity is hereditary, you get it from your kids" has a
twist in the autistic world. It has become commonplace for parents to
diagnose themselves as having Asperger's syndrome, or to pinpoint other
relatives living on the spectrum, only after their own children have
been diagnosed.
High tech hot spots like the Valley, and Route 128 outside of Boston,
are a curious oxymoron: They're fraternal associations of loners. In
these places, if you're a geek living in the high-functioning regions of
the spectrum, your chances of meeting someone who shares your
perseverating obsession (think Linux or Star Trek) are greatly expanded.
As more women enter the IT workplace, guys who might never have had a
prayer of finding a kindred spirit suddenly discover that she's hacking
Perl scripts in the next cubicle.
One provocative hypothesis that might account for the rise of spectrum
disorders in technically adept communities like Silicon Valley, some
geneticists speculate, is an increase in assortative mating.
Superficially, assortative mating is the blond gentleman who prefers
blondes; the hyperverbal intellectual who meets her soul mate in the
therapist's waiting room. There are additional pressures and incentives
for autistic people to find companionship - if they wish to do so - with
someone who is also on the spectrum. Grandin writes, "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."
That's not to say that geeks, even autistic ones, are attracted only to
other geeks. Compensatory unions of opposites also thrive along the
continuum, and in the last 10 years, geekitude has become sexy and
associated with financial success. The lone-wolf programmer may be the
research director of a major company, managing the back end of an IT
empire at a comfortable remove from the actual clients. Says Bryna
Siegel, author of The World of the Autistic Child and director of the
PDD clinic at UCSF, "In another historical time, these men would have
become monks, developing new ink for early printing presses. Suddenly
they're making $150,000 a year with stock options. They're reproducing
at a much higher rate."
Genetic hypotheses like these don't rule out environmental factors
playing a role in the rising numbers. Autism is almost certainly not
caused by the action of a single gene, but by some orchestration of
multiple genes that may make the developing child more susceptible to a
trigger in the environment. One consequence of increased reproduction
among people carrying some of these genes might be to boost "genetic
loading" in successive generations - leaving them more vulnerable to
threats posed by toxins in vaccines, candida, or any number of agents
lurking in the industrialized world.
At clinics and schools in the Valley, the observation that most parents
of autistic kids are engineers and programmers who themselves display
autistic behavior is not news. And it may not be news to other
communities either. Last January, Microsoft became the first major US
corporation to offer its employees insurance benefits to cover the cost
of behavioral training for their autistic children. One Bay Area mother
told me that when she was planning a move to Minnesota with her son, who
has Asperger's syndrome, she asked the school district there if they
could meet her son's needs. "They told me that the northwest quadrant of
Rochester, where the IBMers congregate, has a large number of Asperger
kids," she recalls. "It was recommended I move to that part of town."
For Dov's parents, Jonathan Shestack and Portia Iversen, Silicon Valley
is the only place on Earth with enough critical mass of supercomputing
resources, bio-informatics expertise, genomics savvy, pharmaceutical
muscle, and VC dollars to boost autism research to the next phase. For
six years, the organization they founded, Cure Autism Now, has led a
focused assault on the iron-walled fortress of the medical
establishment, including the creation of its own bank of DNA samples,
available to any scientist in the field on a Web site called the Autism
Genetic Resources Exchange (see " The Citizen Scientists," Wired 9.09,
page 144).
At least a third of CAN's funding comes from donors in the Valley. Now
Shestack and Iversen want to deliver the ultimate return on that
investment: better treatments, smarter assistive technology - and,
eventually, a cure.
"We have the human data," says Shestack. "Now we need the brute-force
processing power. We need high-density SNP mapping and microarray
analysis so we can design pharmaceutical interventions. We need Big
Pharma to wake up to the fact that while 450,000 people in America may
not be as large a market as for cholesterol drugs, we're talking about a
demand for new products that will be needed from age 2 to age 70. We
need new technology that measures modes of perception, and tools for
neural retraining. And we need a Web site where families with a newly
diagnosed kid can plug into a network of therapists in their town who
have been rated by buyers - just like eBay."
The ultimate hack for a team of Valley programmers may turn out to be
cracking the genetic code that makes them so good at what they do.
Taking on that challenge will require extensive use of technology
invented by two people who think in pictures: Bill Dreyer, who invented
the first protein sequencer, and Carver Mead, the father of very large
scale integrated circuits. As Dreyer explains, "I think in
three-dimensional Technicolor." Neither Mead nor Dreyer is autistic, but
there is a word for the way they think - dyslexic. Like autism, dyslexia
seems to move down genetic pathways. Dreyer has three daughters who
think in Technicolor.
One of the things that Dan Geschwind, director of the neurogenetics lab
at UCLA, finds fascinating about dyslexia and autism is what they
suggest about human intelligence: that certain kinds of excellence might
require not just various modes of thinking, but different kinds of
brains.
"Autism gets to fundamental issues of how we view talents and
disabilities," he says. "The flip side of dyslexia is enhanced abilities
in math and architecture. There may be an aspect of this going on with
autism and assortative mating in places like Silicon Valley. In the
parents, who carry a few of the genes, they're a good thing. In the
kids, who carry too many, it's very bad."
Issues like this were at the crux of arguments that Bryna Siegel had
with Bruno Bettelheim in a Stanford graduate seminar in the early '80s,
published in Bettelheim's The Art of the Obvious. (Siegel's name was
changed to Dan Berenson.) The text makes poignant reading, as two
paradigms of scientific humanism clash in the night. Siegel told "Dr. B"
that she wanted to do a large study of children with various
developmental disorders to search for a shared biochemical defect.
Bettelheim shot back that if such a marker were to be uncovered it would
dehumanize autistic children, by making them essentially different from
ourselves.
Still an iconoclast, Siegel questions whether a "cure" for autism could
ever be found. "The genetics of autism may turn out to be no simpler to
unravel than the genetics of personality. I think what we'll end up with
is something more like, 'Mrs. Smith, here are the results of your amnio.
There's a 1 in 10 chance that you'll have an autistic child, or the next
Bill Gates. Would you like to have an abortion?'"
For UCSF neurologist Kirk Wilhelmsen - who describes himself and his son
as being "somewhere on that grand spectrum" - such statements cut to the
heart of the most difficult issue that autism raises for society. It may
be that autistic people are essentially different from "normal" people,
he says, and that it is precisely those differences that make them
invaluable to the ongoing evolution of the human race.
"If we could eliminate the genes for things like autism, I think it
would be disastrous," says Wilhelmsen. "The healthiest state for a gene
pool is maximum diversity of things that might be good."
One of the first people to intuit the significance of this was Asperger
himself - weaving his continuum like a protective blanket over the young
patients in his clinic as the Nazis shipped so-called mental defectives
to the camps. "It seems that for success in science and art," he wrote,
"a dash of autism is essential."
For all we know, the first tools on earth might have been developed by a
loner sitting at the back of the cave, chipping at thousands of rocks to
find the one that made the sharpest spear, while the neurotypicals
chattered away in the firelight. Perhaps certain arcane systems of
logic, mathematics, music, and stories - particularly remote and
fantastic ones - have been passed down from phenotype to phenotype, in
parallel with the DNA that helped shape minds which would know exactly
what to do with these strange and elegant creations.
Hanging on the wall of Bryna Siegel's clinic in San Francisco is a
painting of a Victorian house at night, by Jessy Park, an autistic woman
whose mother, Clara Claiborne Park, wrote one of the first accounts of
raising a child with autism, The Siege. Now 40, Jessy still lives at
home. In her recent book, Exiting Nirvana, Clara writes of having come
to a profound sense of peace with all the ways that Jessy is.
Jessy sent Siegel a letter with her painting, in flowing handwriting and
words that are - there is no other way to say it - marvelously autistic.
"The lunar eclipse with 92% cover is below Cassiopeia. In the upper
right-hand corner is Aurora Borealis. There are three sets of six-color
pastel rainbow on the shingles, seven-color bright rainbow on the
clapboards next to the drain pipe, six-color paler pastel rainbow around
the circular window, six-color darker pastel rainbow on the rosette ..."
But the words aren't the thing. Jessy's painting is the thing. Our
world, but not our world. A house under the night sky shining in all the
colors of the spectrum.
Contributing editor Steve Silberman ( [log in to unmask]) wrote about
Judy Estrin and Bill Carrico in Wired 9.11.
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