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By CLAUDIA WALLIS
Epidemic is a powerful word. It generates bold
headlines, congressional hearings, research dollars
and dramatic, high-stakes hunts for culprits.
It's a word that has lately been attached to autism.
How else to account for the fact that a disorder
that before 1990 was reported to affect just 4.7
out of every 10,000 American children now strikes
60 per 10,000, according to many estimates--the
equivalent of 1 in 166 kids?

But what if there is no epidemic? What if the
apparent explosion in autism numbers is simply
the unforeseen result of shifting definitions,
policy changes and increased awareness among parents,
educators and doctors? That's what George Washington
University anthropologist Roy Richard Grinker
persuasively argues in a new book sure to generate
controversy. In Unstrange Minds: Remapping the
World of Autism, Grinker uses the lens of anthropology
to show how shifting cultural conditions change
the way medical scientists do their work and how
we perceive mental health.
In addition to rising awareness of autism, Grinker
points to these factors:
BROADER DEFINITIONS Each successive edition
of the Diagnostic and Statistical Manual of Mental
Disorders--the bible of mental health--has revised
the criteria for identifying autism in ways that
tend to include more people. Two conditions on
the milder end of the autistic spectrum--Asperger's
syndrome and the awkwardly named PDD-NOS (pervasive
developmental disorder, not otherwise specified)--were
added to the DSM in 1994 and 1987, respectively.
Grinker and others say 50% to 75% of the increase
in diagnoses is coming in these milder categories.
SCHOOL POLICY U.S. schools are required
to report data on kids who receive special-education
services, but autism wasn't added as a category
until the 1991-92 school year. No wonder the numbers
exploded--from 22,445 receiving services for autism
in 1995 to 140,254 in 2004. Grinker points out
that "traumatic brain injury" also became
one of the 13 reportable categories in 1992, and
it had a similar spike.
MORE HELP, LESS STIGMA As services have
become more available for kids with autism, more
parents are seeking a diagnosis they would have
shunned 30 years ago, when psychiatrists still
blamed autism on chilly "refrigerator"
mothers. Doctors are also more willing to apply
the diagnosis to help a patient. "I'll call
a kid a zebra if it will get him the educational
services I think he needs," National Institute
of Mental Health psychiatrist Judith Rapoport
told Grinker.
FINANCIAL INCENTIVES In some states, parents
of children with autism can apply for Medicaid
even if they are not near the poverty line. A
diagnosis of mental retardation doesn't always
offer this advantage.
RELABELING For all the reasons above, many
kids previously given other diagnoses are now
called autistic. University of Wisconsin researcher
Paul Shattuck has found that the number of kids
getting special-ed services for retardation and
learning disabilities declined in 47 states between
1994 and 2003, just as those getting help for
autism was rising. In 44 states, the drop exceeded
the rise in autism.
As convincing as Grinker's analysis seems, arguments
about the apparent epidemic will probably continue.
It's simply impossible to accurately reconstruct
the past incidence of the disorder, given how
radically definitions have changed. Those who
believe the increase is real often focus on the
mysterious paucity of autistic adults. With their
conspicuous symptoms like hand flapping and little
or no language, "I think we would be recognizing
them in institutions," says Dr. Robert Hendren,
executive director of the M.I.N.D. Institute at
the University of California, Davis.
Grinker's answer is that autistic adults are out
there but wearing other labels. "Where are
all the adults with fetal alcohol syndrome?"
he asks. No one over 40 has the condition, thought
to affect up to 1 in 500 kids today, because it
was not recognized until the mid-'70s. "But
no one would say alcoholism among pregnant women
just started," says Grinker.
Grinker, whose 15-year-old daughter is autistic,
concedes that there's something reassuring about
the idea of an epidemic: "Thinking about
any disorder as an epidemic is easier than thinking
about it in terms of multiple causes, shifting
definitions and a scientific reality we are only
just beginning to understand." Besides, if
a disease suddenly spikes, it seems more plausible
that the increase could be reversed--if only we
could find the mysterious environmental trigger.
With autism, though, that hopeful scenario seems
just too simple.
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