"The Geek Syndrome" -- autism

kragen@pobox.com kragen@pobox.com
Tue, 18 Dec 2001 00:31:47 -0500 (EST)


This article is very interesting.

Reformatting it from HTML was more difficult than I expected.  The
original used hyphens for em dashes, which was easy to fix; but
italics in the original are used for several things: foreign words,
quoted words, emphasis, book and magazine titles.  And Mozilla wasn't
smart enough to include URLs with the links.  I guess I should write
JavaScript to fix these problems...

The original is in Wired 9.12, or at
http://www.wired.com/wired/archive/9.12/aspergers_pr.html

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.

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 (http://www.wired.com/wired/archive/9.11/billnjudy.html),"
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, 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
(http://www.wired.com/wired/archive/9.09/disease.html)," 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@wiredmag.com) wrote about
Judy Estrin and Bill Carrico in Wired 9.11.


Copyright © 1993-2001 The Condé Nast Publications Inc. All rights
reserved.

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