NYTimes OpEd: Disorder Out of Chaos

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February 10, 2010

OP-ED CONTRIBUTOR

Disorder Out of Chaos

By ROY RICHARD GRINKER

Washington

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 “ 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<http://journals.lww.com/jaacap/Abstract/2009/02000/Social_Communica\

tion_Competence_and_Functional.6.aspx>

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.<http://archpsyc.ama-assn.org/cgi/content/full/60/5/524> 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.”

Roy Grinker, a professor of anthropology at Washington

University, is the author of “Unstrange Minds: Remapping the World of

Autism.”

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President

The Autistic Self Advocacy Network

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