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By
Suzanne Leigh
Ten years ago, Kathy Marshack, a psychologist
in Vancouver, Wash., was unfamiliar with Asperger's
syndrome in adults.
Asperger's is a condition on the spectrum of autism
disorders that most people associate with children
and teens, but Marshack has about 15 patients
who are either adults with Asperger's or are the
spouses or grown children of them.
Marshack, who says her late mother had Asperger's
and her adopted daughter has it, believes the
condition is widely undiagnosed. In many cases,
it doesn't come to light until a spouse or adult
child seeks therapy for depression or poor self-esteem
that results from the coldness and egocentricity
Asperger's adults demonstrate in relationships,
she says.
The number of Asperger's adults, like the diagnosis,
is hard to pin down. Anecdotal growth in their
ranks and a burgeoning online "Aspie"
adult subculture that includes dating sites, advocacy
groups and chat rooms raises the question: Are
we starting to discover generations who escaped
diagnosis? The condition officially wasn't recognized
until 1994, which leads people such as Marshack
to believe doctors are playing catch-up with adult
diagnoses.
Because some Asperger's adults are spouses and
parents and have enduring careers, others suggest
that the diagnostic criteria are being interpreted
too loosely.
"Almost by definition, an Asperger's person
would not form an intimate relationship, get married
and have children," says research scientist
Katherine Tsatsanis of the Yale Developmental
Disabilities Clinic. "They don't form connections.
The desire, the drive and the social knowledge
is lacking."
An explanation for behavior
What is not disputed is the testimony of those
who say their diagnosis helps explain their lives.
When Liane Holliday Willey was diagnosed with
Asperger's at 40, she felt she had been offered
a key that would "unlock the mysteries that
were me."
The Rockford, Mich., married mother of three wrote
of her suspicions that she had the disorder in
her memoir, Pretending to be Normal, published
in 1999. In it she described an "overwhelming
childhood desire to be away from my peers,"
preferring pretend tea parties in which "the
fun came from setting up and arranging things."
The criteria for Asperger's, according to the
Diagnostic and Statistical Manual of Mental Disorders,
the clinicians' diagnostic handbook, are "qualitative
impairments in social interaction," which
may include poor eye-to-eye gaze, failure to develop
relationships and lack of "emotional reciprocity."
The syndrome also is marked by "restricted
repetitive and stereotyped" behavior, such
as inflexible adherence to routine, hand flapping
or twisting and an abnormal preoccupation with
certain interests.
For William Loughman of Berkeley, Calif., a retired
director of a hospital cytogenetics lab and grandfather
of six, reading about Asperger's led to an epiphany
when his conviction that he had the condition
was confirmed by a psychologist three years ago.
Loughman, 74, says that like many people with
Asperger's, he has difficulty making eye contact
and tends to rock back and forth ("stimming"
in Asperger's parlance).
He believes Asperger's explains why he flourished
in the highly structured environment of the U.S.
Army and partially explains why his first wife
of 10 years divorced him. (His second marriage,
which has lasted 40 years, has weathered decades
of turmoil but is now calm, he reports.)
Disparities in diagnoses
Like other conditions on the autism spectrum,
Asperger's is believed to be caused primarily
by errant genes, and it is not typically associated
with low IQ. Although there's no consensus on
prevalence, a study in May's Journal of the American
Academy of Child and Adolescent Psychiatry pins
it at 1 in 400 among 8-year-olds, more often in
boys than girls.
Though professionals use the same diagnostic criteria,
interpretations make for wide disparities in diagnosis.
Ami Klin, head of the Yale Developmental Disabilities
Clinic, says some people may have family members
with autism-spectrum disorders and exhibit features
of Asperger's, such as "social deficits and
a great deal of rigidities," but these traits
are not tantamount to the diagnosable condition.
Forming close friendships and dating run counter
to Asperger's adults' goals, colleague Tsatsanis
says; Klin says he has never known a parent with
Asperger's.
Bryna Siegel, director of the Autism Clinic at
the University of California-San Francisco, concurs
that an Asperger's parent would be rare, and she
knows of just one short-lived marriage. Recently
she does more "un-diagnosing" than diagnosing,
she says.
But Marshack, whose self-published A Sliver in
My Mind: Loving Those With Asperger Syndrome arrives
this year, says experts who say Asperger's adults
don't marry or have children either "have
their heads stuck in the sand" or do not
believe many have learned to compensate for their
deficits.
Diagnosis can offer fresh hope to those who have
been struggling, she says.
Holliday Willey says she fails to understand concern
about overdiagnosis. "The idea that too many
are being diagnosed - so what? I'd rather gather
in more folks than leave one out."
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