January 2007

GW Professor Rethinks Autism in New Book

By Jamie L. Freedman

It’s a better time than ever to be autistic, says Roy Richard Grinker in his soon-to-be-published book Unstrange Minds: Remapping the World of Autism. A professor of anthropology and director of the Institute for Ethnographic Research at GW, Grinker takes on one of the nation’s hottest topics in the book, written as a tribute to his teenage daughter Isabel, who has autism.

In the past decade, diagnoses of autism have skyrocketed in the United States, capturing national headlines. Some call it a national crisis. Grinker views the news more positively. According to him, the soaring rates of autism are not the sign of an epidemic but rather evidence that we’re finally diagnosing and treating cases correctly.

“A few generations ago, kids with autism spectrum disorders were often labeled mentally retarded, schizophrenic, or just plain weird,” says Grinker. “A child who could pass for close to normal was categorized by some doctors as ‘FLK’ (funny looking kid) and fell through the cracks. A lot of the new cases of autism that we’re seeing fall within this group.”

Improved diagnostic criteria, encompassing a broader range of symptoms, and growing public awareness have spurred the increases—and that’s a positive thing, says Grinker. “There are people who do not like labels, but labels can be positive if they give you a framework for helping people,” he states. “That’s the case here. A child with a diagnosis of autism has access to more services and educational opportunities than ever before.”

Grinker tests his theory far beyond America’s borders—traveling to Korea, India, South Africa, and other parts of the world that have only recently begun to learn about autism to research the topic. He recently received a $120,000 grant from the National Alliance for Autism Research to conduct an epidemiological study of autism rates in Korea. “It’s the first study of its kind ever in Korea, where school and hospital records reflect a very low prevalence of autism,” says Grinker. “On the surface, you’d say, ‘Wow!’ and look at factors like diet and different vaccine regimens to explain the low rates of autism.

“But, if you screen Korean kids for autism using the same diagnostic criteria that we use in this country, you start to see numbers of cases consistent with other parts of the world,” he says. To date, Grinker and his team have screened 32,000 Korean school kids. “We’re finding a lot more cases of autism, and these kids are starting to get attention and services that they didn’t get before.”

Grinker’s research also took him to South Africa, where he met a Zulu family whose autistic son had been diagnosed by a witchdoctor and now attends one of the best schools in Cape Town for autism. “We now have people being trained to identify autism in places that never even had a word for autism,” he says.

Grinker says that his research into how culture affects the way we view autism yielded unexpected benefits for him personally. “I came away with a greater understanding of and appreciation for my daughter,” he says. He cites the example of the Navajos, who attach no stigma to autism. “They simply view their autistic kids as perpetual children who will never leave them. I cherish the idea of being with Isabel forever.”

The book, written for a general audience, doubles as a moving memoir of Isabel’s struggles and personal triumphs. “Isabel has taught me that the unexpected, even the beautiful, can emerge even from the undesirable, like a lotus growing out of the mud, its beauty and purity unsullied by its origin,” Grinker writes.

An award-winning anthropologist specializing in studies of ethnicity and nationalism, Grinker joined GW’s faculty in 1992. Early in his career, he spent two years as a Fulbright scholar living with the Lese farmers and the Pygmies in the Congo. He is the author of four other books, including the widely acclaimed In the Arms of Africa: The Life of Colin M. Turnbull, the story of a former GW professor who was one of the leading anthropologists of the 20th century.

“Unstrange Minds is guided by Turnbull’s belief that anthropology is about much more than going away to distant cultures,” says Grinker. “It’s about coming home and seeing your own world, even your own child, in a new light. It’s about finding that, in the end, the people who can teach you the most might very well be in your own backyard.”

Unstrange Minds will be published by Basic Books on Jan. 22.

Send feedback to: bygeorge@gwu.edu