Autism's Reach: Father Travels World to Study Child's Disorder

By Robin D. Schatz

March 20 (Bloomberg) -- In 1994, Isabel Grinker was just over 2 years old and barely talked; she flapped her arms occasionally, often didn't respond to her name and made only fleeting eye contact. Her parents, Roy Richard Grinker, a cultural anthropologist, and his wife, Joyce Chung, a psychiatrist, knew something was wrong. Eventually, the doctors diagnosed Isabel with autism, then viewed as a rare mental disorder.

Grinker, a professor at George Washington University, has since learned that autism, now considered to be a spectrum of genetically based disabilities, is actually quite common -- even epidemic by some accounts. It occurs in as many as 1 in 150 live births. In his new book, "Unstrange Minds: Remapping the World of Autism,'' Grinker, 45, travels from the U.S. to South Africa, India and South Korea to see how children like Isabel are being diagnosed and treated. We spoke at Bloomberg's New York headquarters.

Schatz: Is there an autism epidemic in the world right now?

Grinker: I think that these higher rates are the most accurate rates we've ever had. It's really, really tough to compare these rates to older rates, and say that there's been a true increase in autism, because the older rates use different methods to study autism, different methods to count it, different definitions. It would be like comparing apples and oranges. But as one scientist I know says, it's even more like comparing apples and automobiles.

I wish there was a word for epidemic that didn't suggest a true increase in numbers of cases. Yes, we're understanding it better and there are more cases that are documented, but that doesn't necessarily mean there's a true rise.

'Big Spectrum'

Schatz: Please define autism. I know it encompasses quite a range of disorders.

Grinker: It does. In fact, a lot of people are starting to use the plural, autisms, because it is such a big spectrum. There are people on this spectrum of autism from the severely mentally retarded and nonverbal to people who are university professors and living and working among us.

But even though there may be a great difference between people at the different poles, they do share some common features. There are core social deficits, problems communicating, even if the language sounds fine in some ways, people are having a difficult time communicating. Usually, there's severe language delay, often very restricted activities, stereotyped hand movements or arm movements and poor eye contact. These are all of the symptoms my daughter Isabel had when she was diagnosed in 1994.

Road Map

Schatz: As a parent, what did you feel like when you got that diagnosis?

Grinker: I hear a lot of parents tell me that the diagnosis of autism is devastating, and I certainly can understand that. But everybody's experience is different. By the time she was diagnosed, we knew she had problems. We knew she wasn't developing language and that she was unusual. Getting the diagnosis of autism gave us a road map; it gave us a framework. We felt like suddenly we knew how to understand her. And that really decreased our anxiety a lot.

Schatz: Did you find any countries that had a better way of dealing with autism or offered more support services than the U.S.?

Grinker: I think that the best situations that I saw were those in which extended families were involved, because there were so many people around who could take care of their kids. I really think that the decline of the extended family in the United States has meant that we don't have as much community support sometimes, as in other cultures.

Perfect Pitch

Schatz: How rare are savants?

Grinker: They're very rare. Such people have extraordinary skills. But even if you were to look at people like my daughter who you never would call savant, there's a tremendous amount of scatter, and that's one thing we see on the autism spectrum -- huge weaknesses in some areas and huge strengths in others. My daughter has perfect pitch. She's a good cellist. She is very, very visual. And she can do cartoons well. Yet, she has a hard time asking for a drink of water sometimes.

Unstrange Minds'' is published by Basic Books (340 pages, $26.95).

(Robin D. Schatz is an editor for Bloomberg News. The opinions expressed are her own.)

Last Updated: March 20, 2007 00:05

©2006 Roy Richard Grinker