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The Geek Theory of Autism
At university, William K. met for the first time people with exceptional
skills like his own
Brad Evenson
National Post
http://tinyurl.com/39lpo
Saturday, March 06, 2004
Glenn Gould may have had Asperger's syndrome. He disliked human contact
and could only maintain relationships when he was in total control. He
was an inspiration for William K., who has a mild form of autism.
CREDIT: CBC, The Canadian Press
Millions of people have mild versions of autism, depression and
attention deficit disorder. They are doctors, neighbours, even the pilot
of your plane. Without a diagnosis, these "shadow syndromes" can ruin
lives, yet with insight and understanding, they can be a gift. The first
of a four-part series on hidden mental disorders.
- - -
OTTAWA - 'I'm in the closet," says William K., his eyes darting around
the Starbucks coffee shop, avoiding contact. "Some people at work may
suspect, but nobody knows. I don't talk about it. There are a few
others, too, I think. You can sort of tell. They're different."
William grew up with a smothering mother and a distant father, in a
childhood of isolation. He met his share of bullies. He spent his first
18 years struggling with his identity, unaware of others just like
himself. At 34, he has never kissed a girl.
But his "closet" doesn't hide his sexuality -- he's a different
invisible minority. Autistic. Not the unyielding, world-of-his-own kind
of autism most of us know about. Not the cute, movie autism of Rain Man.
William did well at a regular high school, attended university and found
a good job. Like the mixed-blood blacks of the American South who used
to pretend to be white, he has "passed."
He is a kind of shadow.
"Florid, full-colour mental illnesses like major depression and
manic-depressive illness come trailed by grey and silver shadow versions
of themselves, the same thing in outline, but indistinct in detail; not
easy to recognize for what they are," John Ratey, a professor of
psychiatry at Harvard Medical School, wrote in his landmark book, Shadow
Syndromes.
Millions of people have some of the biological and personality
characteristics of autism. "In some people, it might show up as a strong
need for structure and order in their lives," says Wendy Roberts, a
developmental pediatrician at Toronto's Hospital for Sick Children, who
is collaborating on a hunt for autism genes.
As scientists peel back the layers of autism, attention deficit disorder
and other mental disorders, they are discovering that millions of
healthy, functioning people have shadows of these disorders. Such hidden
traits may not be crippling, but they can drive behaviour and silently
chart the course of our lives. Sometimes, they are even blessings.
"I think it's very true that the flip side of a disability is often a
gift," says Peter Szatmari, a psychiatrist who is the author of A Mind
Apart: Understanding Autism and Asperger's Syndrome, to be published in
May.
"What people with autism-spectrum disorders have is a gift in perception
and attentiveness. They can see the world in a way that you and I don't
see it. They notice patterns; they notice colours; they notice shapes;
they appreciate that perceptual architecture....
"I think the other gift that they have is they are without guile. They
don't lie. They aren't deceitful. They don't tease and bully; they're
not manipulative."
William K. shifts in his seat and opens his cloth briefcase. He is
prepared for questions. He pulls out a dark green notebook.
"Here," he says, taking off his glasses. "I brought my diary."
Many people know autism as a disorder characterized by withdrawal,
repetitive behaviours and obsessions with bizarre topics. In severe
cases, parents may watch powerless, feeling unloved, as their children
grow into strangers. But like most disorders, autism is a spectrum that
ranges from severe to mild, as with William K.
"[Mental illness] is seen as a black and white situation, but human
beings don't follow these rules and regulations," says Doug Saunders, a
past president of the Canadian Psychological Association. "They follow
their own biological ebbs and flows."
Over the past 20 years, the diagnosis of autism has risen with
mystifying speed. In California, where the increase was first noted,
cases tripled from 1987 to 1998 and have doubled since then. Canadian
figures tell a similar tale.
Theories for the rise range from pollution to the use of mercury in
childhood vaccines. Nothing sticks. Studies have largely ruled out the
latter possibility -- the rate of autism is the same in vaccinated and
unvaccinated children.
Another intriguing notion is the "geek theory," which posits that
autistic men and women, who often thrive in the high-tech industry, meet
and have autistic children.
This isn't as far-fetched as it sounds.
In the late 1980s, Edward Ritvo, a California researcher, began to look
more closely at the parents of some severely autistic children. They
looked a bit autistic themselves. Many of them walked with an odd tiptoe
gait, flapped their hands and rocked in their chairs. A few were social
loners. Other experts confirmed Dr. Ritvo's cautious suspicions -- at
least 11 of the parents in his study were autistic. He later remarked,
"If you had told me 10 years ago that there were autistics who were
married and had kids, I would have said, 'You're crazy.' "
"As with most diseases there appears to be a mild form of autism that is
compatible in adulthood with marriage, parenting, satisfactory
heterosexual performance and gainful employment," he wrote in a landmark
1988 article.
In 1994, psychiatrists added Asperger's syndrome to the ever-growing
menu of mental illness to include the estimated 75% of people with
autism who have normal or better IQs.
Dr. Szatmari, who is head of child psychiatry at McMaster University in
Hamilton, Ont., says not only has the definition of autism broadened,
doctors are better at detecting it. At the same time, similar disorders
such as pervasive development disorder have been lumped together as
"autism spectrum disorders."
"When I started working here in Chedoke Child and Family Centre in 1981,
there weren't people with autism here," he says. "And now we've got more
than 300. It's because people who were getting a different diagnosis in
the past -- a development disability, a learning, disability -- we now
recognize have autism spectrum disorders."
William's mother threw herself into his childhood. She read and sang to
him constantly, believing it would bolster his communication skills. She
read books about left-brain, right-brain thinking. Nothing fit. "Doctors
told me he was just a bit slow," says Mildred Sullivan, who remarried.
But William wasn't slow. On his eighth birthday, he built a working
clock out of an Erector set. "It kept perfect time," Mrs. Sullivan says.
Friendless, sitting at the front of the class -- he's nearsighted -- he
passed all his grades in primary school. "Arithmetic and science came to
him easily," she says. "He laboured over English composition and
grammar. I remember one poem just threw him. 'The fog comes on little
cat feet,' by Carl Sandburg. Metaphors really threw him."
Researchers say autism can be characterized by a deficit or delay in
understanding social cues. "What you often hear is, 'I just don't get
it,' " says Dr. Roberts in Toronto.
Imaging studies show certain brain regions are enlarged in people with
autism, which may affect the speed at which they process some things,
such as dialogue. In the hurly-burly of conversation, they are always a
few steps behind, a little bewildered. Another social function, the
ability to read faces, is also impaired.
"Children with autism often don't make much eye contact with other
people and have little experience in learning to recognize faces," said
Elizabeth Aylward, a professor of radiology at the University of
Washington.
Dr. Aylward told a recent meeting of the Association for the Advancement
of Science that in autistic children, the fusiform gyrus -- the brain's
face-recognition area -- often fails to activate when viewing faces. To
them, human faces are no different than toy trucks, with one exception:
their mother's face.
"This does suggest that this part of the brain is not broken," says
Geraldine Dawson, the psychiatrist who directed the research. With
training, people with autism can learn to recognize faces and develop
coping strategies, such as laughing when other people laugh, even when
they don't really get the joke.
- - -
"Ask him about Glenn Gould," says William's stepfather, Terry Sullivan.
Ten years ago, while attending the University of Waterloo, William read
that the Canadian virtuoso pianist may have had Asperger's syndrome.
Gould was uncomfortable with audiences, disliked human contact and could
only maintain relationships when he was in total control.
"A light went on in my head when I read that," William says. "Growing
up, kids in school used to joke that I was autistic because I rocked in
my chair sometimes and I was good at math. But I thought autism meant
you were retarded. And I am not."
During university, William listened to Gould's most famous recording,
Bach's Goldberg Variations, thousands of times on his Sony Walkman. He
found it soothing. Rocking back and forth in his chair, he built
conceptually upon his Erector set creation, writing software codes to
make sophisticated clocks for computer programs. He also found some
self-esteem. He needed it.
"When I was growing up, I got teased a lot for being different," he
says.
Once, some schoolboys changed the number on his locker, believing it
would confuse him. They didn't realize how William's mind worked in
patterns and sequences. "My locker was the 37th one," he says. "Changing
the number didn't fool me. But it was cruel. And it hurt my feelings."
Ironically, children with severe autism -- the most "different" ones
--don't notice teasing. People like William are stricken by it. Indeed,
surveys show about 40% of people with autism suffer mood and anxiety
disorders -- about four times the general average.
At Waterloo, William met other people like himself who were different.
He learned that Albert Einstein and Bill Gates are both suspected cases
of Asperger's syndrome. He discovered people with the syndrome, which
may also include Sir Isaac Newton, often have unusual skills. William
does. He knows, without consulting his watch, what time it is. Not just
on Earth. On other planets. "A Martian day is 24 hours and 37 minutes
long in Earth time," he says. With practised ease, he adds, "At El
Capatan [on Mars] it's 20 after three."
As disorders go, he decided, his could be worse. Still, he keeps it to
himself. Too many bruises in his past.
- - -
Steve Scherer, a University of Toronto geneticist, has collected the DNA
from more than 100 families with more than one autistic child. He works
with Dr. Szatmari and Dr. Roberts, trying to pinpoint the genes that
give rise to the disorder. But unlike single-gene diseases such as
cystic fibrosis, autism is very complex.
"We noticed a few years back that children who were autistic had a
higher percentage of chromosome abnormalities than the general
population," he says.
As many as 20 genes could be affected. Indeed, vast numbers of people
could possess in their genome the spot mutations that lead to certain
autistic behaviours. Or perhaps not.
In 2000, Dr. Szatmari conducted a study to look at autistic traits in
the blood relatives of children with autism and in the general
population. The researchers looked for social isolation, personal
rigidity and difficulty with conversation. "We found that it occurs in
about 25% of biological relatives and that it occurs in about 10% of
non-biological relatives," he reports. That doesn't mean one in 10
people has autism genes. It means plenty of folks are wooden, geeky and
shy.
"A lot of people are now overdiagnosing autism spectrum disorder,
particularly in kids who are a bit shy and anxious and love to hang out
on the computer," he says.
- - -
William opens his diary to Aug. 17, 2003. On that day, he recorded his
interest in a female employee at his company, a large Ottawa high-tech
firm, which designs software for satellite applications.
"She is beautiful," he wrote.
"She likes to wear black. She changes the colour of her hair. I like it
the way it is today."
He has not yet summoned the courage to ask her out. No longer a loner,
he has spoken of his plight with one of his work colleagues. But he gets
too anxious when he sees the woman and veers away.
It could be her loss. Dr. Roberts says mildly autistic men can make good
husbands. They certainly are not deceitful. And they are affectionate;
they love the touch of skin and strong hugs. She knows a Toronto woman
who married a highly functioning autistic man, and they have had three
autistic children together -- all boys. The woman laughs with
resignation but no bitterness about her situation. "After all," she told
Dr. Roberts. "I fell in love with their father."
Simon Baron-Cohen, a Cambridge University psychologist, noting that four
times as many men as women are autistic, suggests autism is an extreme
form of male intelligence. While women are better at empathizing, men
are better at systemizing.
Autism, he suggests, isn't a disease or shadow syndrome lacking a cure.
It's a guy thing. Dr. Baron-Cohen says people with autism lack a "theory
of mind." They can't guess what other people are thinking, an essential
social skill. So they adopt coping mechanisms, turning social situations
into cognitive problems.
Hmm. This person is smiling. Maybe he told a joke. Oh yes, there's the
joke. I should respond in kind. It looks a bit stiff and formal, but
it's just a coping mechanism.
Do they get the joke?
"Eventually," Dr. Szatmari says.
"Once they think it through, they're perfectly capable of understanding
the joke. Just as they're perfectly capable of love and affection and
deep feeling and deep emotion."
- - -
William flips his diary pages forward to Jan. 18, 2004. On that day he
made contact with the woman in his office.
"She spoke to me about the [Mars] Spirit lander. She knows I am
interested in space. I talked too much. I wish I could stop talking
around her. It is a problem."
Perhaps. But that particular problem has nothing to do with autism or
shadow syndromes.
That's a guy thing.
On Monday: Most people know the stereotype image of a hyper child pumped
full of Ritalin, but few of us know about the millions of adults who
have symptoms of a mild "shadow" of ADD, which affects their
personality. They don't seem sick or even unusual. They are often
emergency room doctors, stockbrokers and pilots -- smart people who need
stimulation to keep their noisy, whirring brains feeling good.
C National Post 2004
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