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The Geek Syndrome
By Steve Silberman, WIRED magazine Autism
- and its milder cousin Asperger's syndrome - is surging among the
children of Silicon Valley. Are math-and-tech genes to blame?
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. 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. 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. 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
1943, a child
psychiatrist named Leo Kanner published a monograph outlining a curious
set of behaviors he noticed in 11 children at the Johns Hopkins
Hospital in Baltimore. A year
later, a pediatrician in Vienna named
Hans Asperger, who had never seen Kanner's work, published a paper
describing four children who shared many of the same traits. Both
Kanner and Asperger gave the condition the same name: autism - from the
Greek word for self, autòs - because the children in their care
seemed to withdraw into iron-walled universes of their own. 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." 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. 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. 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. 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. 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." Continued:
WIRED
Issue 9.12 Dec 2001
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