Autism's Many Meanings
A child's culture will affect how he's treated
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.
This story appears in the January 15, 2007 print edition of U.S. News & World Report.