Social algorithms—how to respond to different social situations and
verbal cues—allow patients with Asperger's to learn conversation and
other social skills cognitively so they can gain an intuitive sense of how to
behave.
As a young child, Jeannette (not her real name) was consumed by Pokemon,
the collectible card game of animated creatures originated in Japan.
It was no mere pastime, but an all-encompassing interest that engaged her
considerable vocabulary to the exclusion of all other age-appropriate
attachments or interests. And it was accompanied by other troubling signs: an
inability to make eye contact with others, to engage with peers in a
reciprocal fashion, and to make friends.
As Jeannette matured, her social isolation deepened, as did the uncommon
and all-consuming nature of her interests. As a teenager she developed an
exhaustive knowledge about everything related to a fast-food chain in the
state where she resides. At an age when conformity to the norm is at a premium
and castigation of those who deviate is most severe, Jeannette inhabits an
island of her own inaccessible
idiosyncrasy.FIG1
Illustration: Tony MacFarlane
As little as 15 years ago, she also may have had difficulty getting a
psychiatric diagnosis that fit. Too verbal and intellectually adept for
autism, she was liable to get a diagnosis of obsessive-compulsive disorder
(OCD), a personality disorder, or even schizophrenia.
Today, Jeannette's primary condition is recognized as Asperger's disorder,
a close relative of autism distinguished by severe and sustained impairment in
social interaction, but without the clinically significant delay in language
acquisition characteristic of autism; also distinctive is the presence of
restrictive, highly idiosyncratic interests.
First introduced in DSM-IV in 1994, Asperger's is still prone to
being overlooked or labeled as something else, according to Daniel Hoover,
Ph.D., director of psychology training at the Menninger Clinic and an
associate professor of psychiatry at Baylor College of Medicine.
As in the case of Jeannette, OCD is often diagnosed; Hoover acknowledged
that Jeanette exhibits some of those features and receives medication for
them. But overlooked before she was diagnosed with Asperger's was the severe
and sustained impairment in social interaction, dating back to her earliest
years, he said.
Hoover and other clinicians who spoke with Psychiatric News said
awareness of Asperger's by general and child psychiatrists has grown steadily
in the last 12 years, providing a diagnostic fit for children and adults whose
lifelong experience has often been most akin to that of the square peg.
“Even a decade ago people had a good understanding about autism, but
these Asperger-y kids fell between the cracks,” said Aradhana Bela Sood,
M.D., M.S.H.A. “They didn't fall neatly into any psychiatric diagnosis,
and they didn't look like they had autism because their language was so well
developed.”
She is chair of the Division of Child and Adolescent Psychiatry at Virginia
Commonwealth University Health Systems and medical director of the Virginia
Treatment Center for Children.
“People knew they were odd, but no one knew what to do with
them,” she said.
“As a clinician in child mental health, it has been a great relief to
have this diagnosis as something you can hang your hat on. [These youngsters]
have tremendous needs that must be met by schools and the medical
community.”
Asperger's was first described in 1944—a year after Leo Kanner
described autism—by Viennese medical student Hans Asperger, who wrote
about a group of boys exhibiting autistic traits but whose language was
precocious.
“These are kids who talk before they walk,” explained Fred
Volkmar, M.D., director of the Yale Child Study Center. “Words are their
lifeline, and from a research perspective that's a critical observation that
captures the difference from autism.”
Volkmar and the Yale Child Study Center have been leaders in research on
and treatment of autistic spectrum disorders.
The Asperger's description went “underground” for several
decades, but during an international field trial of autism conducted by
Volkmar and others in the 1980s, a number of patients consistently surfaced,
across cultures and languages, who matched the definition. From this emerged a
consensus definition for inclusion of Asperger's in DSM-IV in
1994.FIG2
Aradhana Bela Sood, M.D.: “As a clinician in child mental health,
it has been a great relief to have this diagnosis as something you can hang
your hat on.”
Photo courtesy of Aradhana Bela Sood, M.D.
Now, said Volkmar, the criteria are in need of refinement and will likely
be updated in the next edition of DSM. Chief among the difficulties
with the current criteria is dependence upon the absence of criteria
normally present in autism—namely, the lack of delay in acquisition of
language at age 2 or 3—and the stipulation that if autism cannot be
ruled out, it should be the diagnosis of choice.
Hoover pointed out that while Asperger's patients do not lack vocabulary or
speech production and are often precocious in this area, they have trouble
fitting language into context and lack other skills requiring intuition of
social context.FIG3
Fred Volkmar, M.D.: “Words are their lifeline, and from a research
perspective that's a critical observation that captures the difference from
autism.”
Photo courtesy of Fred Volkmar, M.D.
“They may have a variety of language weaknesses as toddlers including
delayed onset of speech, rattling on in tangential ways, and speech
articulation problems,” he said. “But they are of a different
quality than those found in high-functioning autism, such as mutism or very
severe deficits in vocabulary.”
Clinicians say a patient's history of language acquisition is difficult
enough to ascertain when a patient first presents at the age of 10 or 12, let
alone as an adult.
“When you see these kids in the clinic, it feels somewhat artificial
to make a distinction just because they had an early language delay,”
said Kathleen McKenna, M.D., director of the Psychosis and Special Diagnostics
Center at Children's Memorial Hospital in Chicago.
“If they had a language delay at age 3 or 4, I am forced by
DSM to call it autism, and if they didn't and have a normal IQ, to
call it Asperger's. That's not a problem because those who have the language
delay often continue to have signs of autism. And often, the more severe cases
end up being called autism and the less severe cases are Asperger's. But not
always, and it can seem arbitrary eight or nine years down the road. If the
family is overwhelmed, the least of their concerns is remembering exactly when
the child first uttered single words and phrases.”
Confusion over diagnosis, combined with a relative paucity of research, has
resulted in extremely wide-ranging estimates of prevalence of
Asperger's—between 3 and 48 per 10,000, said Volkmar.
Nonetheless, as Hoover said, “there are real differences [between
Asperger's and autism], and they need to be better spelled out.”
So what should clinicians look for? “In making the diagnosis,
clinicians should look for three bell-ringer traits,” Hoover said.“
These are impaired social interactions, especially difficulty with
social reciprocity; idiosyncratic interests or activities; and odd,
mechanical, or socially inappropriate speech patterns.”
As with Jeannette, treatment may involve medication of secondary symptoms
such as obsessive-compulsive tendencies or attention-deficit problems;
antidepressants, anxiolytics, or atypical antipsychotic medications may be
useful.
Social-skills training targeted at teaching specific, often rudimentary
social rules and protocols is the other component of treatment. Social
algorithms—how to respond to different social situations and verbal
cues—allow patients with Asperger's to learn conversation and other
social skills cognitively so they can approximate an intuitive sense of how to
behave.
“In contrast to autism, you want to use the verbal capacities of
Asperger's patients as a pathway to treatment,” Volkmar said.
The long-term prognosis is not necessarily bleak; the intensity of interest
and volume of knowledge that patients may bring to idiosyncratic subjects can
make them highly valued workers as adults. Along a continuum the symptoms of
Asperger's can at some point “fade to normal,” and there are those
in the community of people with autism-spectrum disorders who resist being
labeled as disordered. But McKenna said that for young people, especially
teenagers, the “different-ness” they experience can be
traumatic.
She described her nephew, a child with Asperger's, who has developed a
voluminous knowledge of Civil War facts and trivia. Others, like Jeannette,
develop interests that are far less accessible to others—the mechanics
and design of gasoline pumps and deep fat fryers, train schedules, and
telephone pole insulators.
“Even when these kids don't meet criteria for depression, they are
very much at risk for demoralization,” McKenna said. “In middle
school especially they can experience self-hatred and anger as they try to
make friends and find more and more that people aren't interested in their
favorite topics and aren't patient with their social awkwardness.
“So there is a place in treatment for supportive therapy and
psychoeducation,” she said. “Sometimes I will give them things to
read about Asperger's, and they are incredibly relieved to know there is a
disorder and that other people have it and have found a way to lead happy
lives.”
Information about Asperger's and links to other information sites
can be accessed at<www.autism.fm>,
maintained by the Yale Child Study Center. ▪