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Life Out of Sync: Asperger Syndrome
High-functioning autism. People with this disorder
don't get the joke, or most other interpersonal cues that
society takes for granted. They have difficulty with
communication and social skills, and can become preoccupied with
one narrow subject. But they are typically bright and often
excel in math, science and high-tech. Unrecognized and untreated
until recently, the disorder is now the focus of research,
classes and hope.
by Seattle Times Staff, July 23, 2003
For more articles like this
visit
https://www.bridges4kids.org.
Ashton Smith
knew he didn't fit in.
The 16-year-old Mountlake Terrace boy couldn't make friends. The
jokes, camaraderie and easy conversation typical of teenagers
were beyond his grasp. The social cues that guide most people
through the world were as impenetrable to him as a concrete
wall.
The problems are typical for people like Smith, who suffer from
Asperger syndrome, a neurological malady that dooms many of its
victims to a lonely life and dead-end jobs despite
higher-than-average intelligence.
In Smith's case, the condition, a form of autism, may have been
a factor in his death earlier this month.
More than five weeks after his mother reported him missing, the
boy's body was discovered in the woods near their apartment. He
was shot once in the head by a handgun that lay at his side.
(See related story.)
Though police haven't determined whether the death was suicide
or homicide, Smith's parents said he had been depressed and had
tried to kill himself once before.
"I hope this will bring to light how isolated these kids are and
how misunderstood," said Helen Powell, who runs the Asperger
Support Network in Seattle. "Their world can look pretty bleak."
Threats of suicide are very common, even among youngsters, said
Powell, whose 17-year-old son has Asperger syndrome. "I've heard
it from 4- and 5-year-olds."
Until nine years ago, the disorder went unrecognized, and kids
who had it were simply labeled "weird."
"When the diagnosis became official in 1994, schools finally had
a place to put that 'weird' kid they'd been diagnosing with ADD
(attention-deficit disorder) or whatever," said Mary Meyer,
whose daughter has Asperger and who heads the adult chapter of
the Asperger Syndrome Education Network in Northern New Jersey,
where she lives.
An estimated one out of every 1,000 people suffers from the
syndrome, named for the Austrian pediatrician who first
described it in 1944. Much progress has been made in identifying
children with the disorder, but there remain thousands of adults
who were never correctly diagnosed.
Meyer's 28-year-old daughter, Susan, saw psychiatrists from the
age of 5 but was only given a name for her problem when she was
in college. By that time, the young woman was seriously
depressed.
Every week now, Susan Meyer attends a social-skills group at
West Bergen Mental Healthcare in Ridgewood, N.J.
Karen Roe started the Seattle Asperger Syndrome Education and
Support Group five years ago after struggling with the condition
herself and watching her son, now 11, face the same social
awkwardness that set her apart from others.
"I always felt like I didn't belong on the same planet," she
said.
Roe, who became a counselor specializing in Asperger, offers an
intensive training program called "The Gift of Gab" to help
teens and adults learn how to converse more easily and read
other people's body language and moods.
People with Asperger are often particularly competent in
high-tech fields. In 2001, Wired magazine ran an article
suggesting that the couplings of technologically brilliant but
socially inept people may be to blame for huge increases in the
number of children with Asperger syndrome and autism in areas
such as California's Silicon Valley.
Roe says her training program is particularly useful for people
who hold jobs at Boeing, Microsoft and other Northwest
technology companies.
"They can often get the job," she said, "but it's hard for them
to hold it because of their difficulty with communication and
social skills."
Movies with no sound
Dr. Jeanne Marron, clinical director for Asperger services at
West Bergen, said the above-average intelligence of most of her
clients makes it possible to teach them how to read and react to
social cues, an instinctive skill they lack.
For example, she shows them movies with the sound turned down,
guiding them to examine the changes in people's expressions
during emotional scenes. "One study showed that people in the
(Asperger) spectrum only focused on the mouth, whereas most
people scan the eyes and the entire face," Marron said. "We get
them to do this."
Susan Meyer said this training has helped her "become better at
dealing with people who are angry or have different opinions
than I do."
Researchers at the University of Washington's Autism Center are
investigating whether it's possible to "switch on" brain regions
involved in recognizing faces and reading expressions, which
generally show very little activity in people with Asperger. In
the project, which is just getting started, children are
repeatedly shown photographs and coached on what to look for,
said center director Geraldine Dawson, co-author of "A Parent's
Guide to Asperger Syndrome and High-Functioning Autism." Later,
their brains will be scanned again to see if activity levels
have increased.
Thus far, genetic research has revealed no medical answer to the
disorder, although MRI scans show significant differences in
nerve-cell connections in the brains of people with Asperger
syndrome.
In the meantime, "education and support are the interventions of
choice," said Peter Gerhardt, executive director of
Nassau/Suffolk Services for Autism in New Jersey. "With adults,
it runs the gamut from how to get a job to how to avoid being a
victim of sexual abuse."
Without an ability to understand subtleties in conversation and
body language, it's easy to get taken advantage of, emotionally
and physically.
Gerhardt was formerly at Rutgers' Douglass College, where he
formed a social-skills group that Susan Meyer attended. He
dubbed the group "Aspies With an Attitude."
Bestowing this nickname, said Mary Meyer, "was an incredibly
important way to help them form an identity, a sense of
belonging and self-esteem — even though it's a strange kind of
belonging."
Gerhardt said his mission is to raise awareness about his
patients. "I present their stories at autism conferences, to get
the message out about who they are, and that they are
interesting and should be valued," he said.
Dawson, who directs the UW's center, said she also emphasizes
the positive qualities of Asperger syndrome in her book. Many "Aspies"
possess an amazing capacity for visualization that makes them
well-suited to engineering, architecture and art. And their
ability to memorize staggering amounts of information is a skill
many envy.
"Instead of just focusing on the challenges, we're just as
interested in the unique traits and capabilities," Dawson said.
A virtual birthday party
An online program called KidTalk developed by the University of
Washington and Microsoft aims to relieve the isolation of
youngsters with Asperger by offering a nonthreatening
environment where they can converse by computer. The program
presents social situations, such as a birthday party, then
guides kids through the intricacies of the social interactions
through a chat-room format. A trained therapist "listens in,"
offering private tips and comments to help children interact
more smoothly.
"It can be easier for kids with Asperger to have more intimate
and deep relationships by computer, when they're not overwhelmed
by face-to-face interaction," Dawson said.
Two other vast challenges remain for adult Aspies: employment
and housing.
"James," 46, lives with his widowed father and cannot hold a job
despite his genius IQ. He spends his days in front of the TV and
the computer, reading Old English literature and leaving the
house only for martial-arts classes. His father, "Dave," worries
that when he dies, James will have nowhere to go and no means of
support.
"He can take care of himself, and he can drive, but he doesn't
have economic self-sufficiency and can't plan ahead," Dave said.
With Marron's help, James has been learning how to prepare for
job interviews. Some Aspies also need her help making sure they
have a working atmosphere free of loud noises or flashing
lights. "I think for our higher-functioning people, there is
hope of getting a meaningful job," Marron said.
Susan Meyer longed to become a teacher, but she fears that's not
possible. Instead, after several unfulfilling part-time jobs,
this college graduate is looking into training as a locksmith.
Marron said the health-care center is seeking funding for a
residential program where staff members would check in
regularly, monitoring the budgeting and housekeeping tasks that
often prove difficult for people with Asperger.
"My long-range goal is to help every one of these Aspies have as
productive a life as possible," said Mary Meyer. "So many of
them could make such a wonderful contribution to society."
Characteristics of Asperger syndrome
• Extreme inability to interpret social cues.
• Difficulty understanding other people's feelings.
• Difficulty judging personal space; motor clumsiness.
• Marked impairment in the use of multiple nonverbal behaviors
such as eye gaze, facial expression, body posture and gestures
to regulate social interaction.
• Difficulty in developing age-appropriate peer relationships.
• Hypersensitivity to loud noises, clothing, food textures and
odors.
• Impaired speech and language skills in volume, intonation,
inflection and rhythm; may exhibit "professorial" speaking
style.
• Inflexible or obsessive adherence to routines; repetitive
behaviors.
• Preoccupation with a particular subject to the exclusion of
all others.
• Socially and emotionally inappropriate responses.
• Strong sense of honesty, justice and fairness.
• A desire to be helpful, obedient and accommodating.
• Strong ties to home and family.
• Creativity in several areas of interest.
• Uncompromising principles.
• High personal standards.
• Good organization skills.
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