The absence of an autism epidemic

When GW professor Roy Richard Grinker’s two-year-old daughter Isabel was diagnosed with autism in 1994, he knew it would affect the rest of their lives. But he didn’t anticipate how much this personal situation would impact his professional life.

While a diagnosis for young Isabel’s symptoms – which typically include having problems with social interaction, communication and the brain’s cognitive function – was relieving, Grinker said he and his wife’s poor understanding of autism was unsettling.

“We felt very isolated and alone because we didn’t know anyone with this disorder,” said Grinker, who teaches anthropology, human sciences and international affairs at GW. “As time went on, people started to ask me questions about it and I looked at the literature and found we knew very little about autism outside of North America and the United Kingdom.”

So Grinker, true to his nature as a social anthropologist, became determined over the years to find out more. He traveled the globe – from South Korea to South Africa to India – to study autistic people in each country and compare the disability’s influence across regions. He compiled personal stories and cross-cultural findings into his fifth published book called, “Unstrange Minds: Remapping the World of Autism,” on sale Monday.

“Over the past 10 years there’s been a big transformation for what autism is seen as. I realized that cultural background, even in the United States, is significant,” he said. “Often it’s culture that changes science.”

Grinker saw this firsthand when he met the Khumalo family, from the Zulu tribe in South Africa, who didn’t know what to do about their six-year-old son who had stopped talking, avoided all eye contact and made strange hand movements.

Finally, his parents Suzanna and Golden Khumalo took him to a local witchdoctor, expecting goat sacrifices, expulsion of evil and an ancient tribal diagnosis, and after two days the witchdoctor had the answer – it was autism. Now, the family knows more than can be imagined about the disability that affects their son, Grinker said.

“They didn’t have a computer or Internet access, but one day Suzanna told me there were 166 children with autism in South Africa. When I asked where that figure came from, she said there must have been a study – she found out it was from Brick Township, N.J.,” he said. “To hear that from someone is amazing.”

Grinker also saw the cultural effects of autism elsewhere – in France autism was considered a form of psychosis up until a couple of years ago, whereas in the U.S. it stopped being classified that way in 1980.

“It has to do with the culture of psychology,” he said, explaining France’s reluctance to consider autism a disability. “It came about because parents in France demanded change.”

And what Grinker developed from his cross-cultural research is a unique (and sometimes controversial) theory: what is often referred to as an “autism epidemic” because of the high jump in people diagnosed with the disability in the past decade is not an epidemic at all. Instead, it’s just more focused and defined detection because of cultural influences.

According to the Autism Society of America, autism diagnoses in the U.S. grew by 173 percent in the 1990s and it’s labeled the “fastest-growing developmental disability.” Grinker, though, has another idea for this upshot in the numbers.

“One can have an increase in prevalence, or number of people with a particular diagnosis, without an actual increase in the illness,” Grinker said. “Many of these people would never have had a diagnosis before. They would have been called weird, unnormal and not given the right type of attention they needed.”

And Grinker’s book explains this belief, along with his personal anecdotes. He said there is an overall optimistic and encouraging tone behind his findings.

“In the midst of all this language about panic and disorder I really do think I have something positive to say,” he said. “We have made great strides and advances. There are more people doing research than ever before.”

Grinker said he did the bulk of the writing for the book between 2004 and 2005 when he took a year off of teaching at GW because he received a fellowship. But the year and his book took an unexpected twist pretty quickly.

“Just as my year off was starting my wife was diagnosed with breast cancer. She had to go through surgery and chemo and radiation and I think writing the book while dealing with a family crisis made me appreciate just what I had and it made me appreciate how far my daughter has come,” he said. “Farther than doctors said she would when she was two.”

Today, Grinker’s daughter Isabel is 15 years old. Over the past decade, autism has seeped into most aspects of his life – his research findings come up in the courses he teaches and one graduate class even focuses on it.

“I envy the person whose kid is diagnosed with autism today because they won’t have to go through what I went through,” he said. “It’s a better time than ever to be autistic because you’re not strange anymore. They are not like everybody else but they are not bizarre.” n

The Hatchet has disabled comments on our website. Learn more.