Autism's Many Meanings : A child's
culture will affect how he's treated
January 7, 2007
By Nancy Shute
 Roy
Richard Grinker knows autism all too well; his daughter Isabel, now
15, was diagnosed with the developmental disorder when she was 2
years old. As a professor of anthropology at George Washington
University, he wondered how culture influences our perception of
autism-which impairs a child's communication and ability to
interact-and has traveled the world to find out. His new book,
Unstrange Minds: Remapping the World of Autism (Basic Books),
reveals his discoveries abroad and at home.
Is autism universal?
It seems to be. We don't know much
about the prevalence, but we do know it exists everywhere, and in
every culture. We needed to start looking at autism in other places,
if only to find out if there were certain environments where people
did better.
The number of people diagnosed has
increased greatly in recent years. You think that's because we're
doing a better job of counting, not because there's a sudden
epidemic. Why is that?
The concern about the "epidemic" of
autism is all about the methods we use to count. Twenty years ago,
we didn't even diagnose autism as a separate disorder; it was a
symptom of childhood schizophrenia. Autism also wasn't used to
describe someone who had a seizure disorder, for example. We know
that about 25 percent of people with autism have a seizure disorder.
And today we're diagnosing autism among people with even very mild
symptoms. When my daughter was diagnosed in 1994, it was a strange
and rare disorder. Now, 13 years later, it's familiar and common.
How has that change affected
your family?
There are some people who would say
that the use of the term autistic to refer to such a wide range of
people impoverishes the term. But speaking as a father, the
expansion of the term is wonderful, because my daughter is not
treated as an alien who should be institutionalized. If you go to
India or South Korea and see how many people with autism are hidden
away, you see how far we've come.
Indeed, you tell heartbreaking
stories of parents who feel that they can't admit they have an
autistic child.
A mother in South Korea is willing
to say she's a bad mother rather than admit that there's a
developmental disorder in the family. Parents there are afraid that
the marriage prospects for their other children will be diminished;
evidence of a biological or genetic abnormality is enough to
frighten most families away. Parents also worry that their
apartments will lose value if people know someone with autism lives
there. As a result, children are often kept out of school and day
care, and hidden from neighbors.
It sounds as if parents are often
pretty much on their own in trying to get help.
In India, someone with autism is
usually called mentally retarded or, if not that, mad. A
pediatrician might not even be aware of the word autism. It really
forces the parents to become experts. I saw mothers come from two
hours away each morning to the only school for autistic children in
New Delhi.
In raising these children, they
were going against the most basic expectations of the society; the
typical 6-year-old is very much guided by his grandmothers. These
mothers rose to the challenge and said, I don't think the extended
family is the right way to do it. The parents were just amazing.
Even though attitudes in the United
States have improved, it's still not easy raising an autistic child.
You describe an incident in which a school principal dragged Isabel
out of the cafeteria because she wasn't acting "normal."
You never know what kind of person
you're going to encounter. Every time Isabel enters into a situation
and you have people who want her to be exactly like everyone else,
we know we'll get that phone call. You really do always have to
fight for your kid.
Is it getting easier for Isabel?
The older she gets, the easier it
is for her to monitor herself and to understand if she's reading
social cues and doing something appropriate or inappropriate. One of
the things I always emphasize is how much progress people with
autism can make as they grow up. They can live independently and
sometimes get married. People find ways to adapt. They get better.
Isabel doesn't feel excluded or
marginalized. She's in a special-ed program, but it's within a
regular high school. She plays cello in the orchestra; she was in
the winter concert the other day. These little moments to me are
victories. You learn to appreciate the small things.
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