[wordup] The Geek Syndrome - Autism on the Rise

[Adam Shand]

Via: http://slashdot.org/article.pl?sid=01/12/17/013243&mode=flat
From: http://www.wired.com/wired/archive/9.12/aspergers_pr.html
More: http://news.bbc.co.uk/hi/english/health/newsid_1409000/1409196.stm

The Geek Syndrome
By Steve Silberman

  Autism - and its milder cousin Asperger's syndrome - is surging among
  the children of Silicon Valley. Are math-and-tech genes to blame?

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, auto`s
- 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.

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.

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.

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,
Poke'mon, 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 "Poke'mon 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 (digaman at wiredmag.com) wrote about
Judy Estrin and Bill Carrico in Wired 9.11.