Disorder Out of Chaos

• Sign in to Recommend
• Twitter
• Sign In to E-Mail
  
• Print
• ShareClose
  • Linkedin
  • Digg
  • Facebook
  • Mixx
  • MySpace
  • Yahoo! Buzz
  • Permalink
  • 
    

Washington

Skip to next paragraph

Enlarge This Image

Na Kim

Related

Health Guide: Asperger Syndrome

IF you ask my daughter, Isabel, what autism means to her, she won’t say that it is a condition marked by impaired social communication and repetitive behaviors. She
will say that her autism makes her a good artist, helps her to relate
to animals and gives her perfect pitch.

The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal
with profound cognitive disabilities, while others are accomplished
professionals.

Many people with milder symptoms of autism have, for the past 20 years or so, received a diagnosis of Asperger’s disorder. Some autistic adults call themselves “Aspies” to celebrate
their talents and differences. And many parents have embraced the label
because they have found it less stigmatizing, and so it has eased their
sense of loss.

This may soon change, however. The American Psychiatric Association, with its release this week of proposed revisions to its authoritative Diagnostic and Statistical Manual of
Mental Disorders, is recommending that Asperger’s be dropped. If this
revision is adopted, the condition will be folded into the category of
“autism spectrum disorder,” which will no longer contain any categories
for distinct subtypes of autism like Asperger’s and “pervasive
developmental disorder not otherwise specified” (a category for
children with some traits of autism but not enough to warrant a
diagnosis).

The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding
autism as one condition that runs along a spectrum.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis
became more common, it broadened the public understanding of autism as
a spectrum. It helped previously undiagnosed adults to understand their
years of feeling unconnected to others, but without bestowing what was
considered the stigma of autism. And it helped educators justify
providing services for children who, in the past, might have been
unappreciated or even bullied because of their differences, but
received no help from teachers.

It’s no longer a secret that people with autism can have careers and meaningful social relationships. Witness the spate of recent movies, from HBO’s “Temple
Grandin,” about a woman with autism who became an animal scientist
famed for her designs of humane slaughterhouses, to “Mary and Max,” an
animated feature about a friendship between a 44-year-old man with
Asperger’s and an 8-year-old girl.

But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic
disorder. Indeed, in the current diagnostic manual, a child who has
good language acquisition and intelligence qualifies as autistic if, in
addition to having restricted interests and problems with social
interactions, he has just one of the following symptoms, which are
common among children with Asperger’s: difficulty conversing, an
inability to engage in make-believe play or repetitive or unusual use
of language. Even the best available diagnostic instruments cannot
clearly distinguish between Asperger’s and autistic disorder.

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high
functioning.” Likewise, people with autism who are described as “low
functioning,” including those without language, can have the kinds of
intelligence and hidden abilities that are associated with Asperger’s —
in art, music and engineering, for example — and can communicate if
given assistance.

Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with
autism often exhibit isolated autistic traits.
With autism, as with many medical diagnoses — like hypertension and
obesity — the boundary lines are drawn as much by culture as by nature.
Dividing up the workings of the mind is not as neat and orderly as
categorizing species.

The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with
autism. When Isabel was 3, she had all the symptoms of autistic
disorder, but if she walked into a doctor’s office today as a new
patient — a chatty, quirky high school senior — she would more likely
be given a diagnosis of Asperger’s disorder. Narrow diagnostic
categories do not help us understand the way a person will develop over
time.

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in
her high school health class. “My name is Isabel,” she said, “and my
strength is that I have autism.”