With Us All Along?


Anthropologist Sees Autism Epidemic Through Controversial Lens

The autism “epidemic” may actually be a good thing. That’s the startling and optimistic conclusion offered by world-renowned anthropologist Roy Richard Grinker, the father of a 15-year-old daughter with autism, in the new book “Unstrange Minds: Remapping the World of Autism.”

An epidemic, according to the Encyclopedia of Public Health, is “an occurrence of cases of a disease in excess of usual expectations for a particular population.” By that definition, it would certainly seem that we’re in the midst of an epidemic of autism. In 1992, according to the U.S. Centers for Disease Control and Prevention (CDC) and the National Center for Health Statistics, 15,580 cases of autism had been diagnosed in the United States. By 2003, there were more than 300,000 diagnosed cases. That’s an overall diagnosis increase of more than 800 percent over 10 years. Today, the CDC estimates that 1 out of every 166 people in the United States has autism.

“When my daughter, Isabel, was diagnosed, I felt like autism was an epidemic too,” said Grinker, director of the Institute for Ethnographic Research at George Washington University. “We were in a childbirth class with six other couples, and two of us have children on the autism spectrum. My first reaction was, ‘Wow, is there something in the water?’ It does look like a crisis. But the increase in the prevalence of autism is not necessarily a crisis. I think it’s an achievement.”

How can this “epidemic” possibly be viewed as anything but deeply alarming? It’s simple, Grinker says: These cases of autism have been with us all along. It’s only very recently that people with autism have been better identified, correctly diagnosed, and given appropriate services for their needs—and accurately counted.

“We have rates of autism that are 1 in 166. Maybe we’re doing something right. Counting cases correctly, seeing the autism spectrum properly, becoming aware of what is and isn’t autism. That’s why we’re seeing all these cases, not because there’s some environmental factor out there stalking us,” Grinker said.

Dissecting the Increase “Unstrange Minds” examines half a dozen epidemiological and cultural factors that, Grinker argues, account for the skyrocketing increase in autism diagnoses over the past decade. No one factor necessarily accounts for all of these “new” autism cases, he said, but taken together, they may well explain an enormous number of them. These factors include:

Giving the condition a name: Although psychiatrist Leo Kanner first described what he called “early infantile autism” in a published paper in 1943, the U.S. Department of Education had no classification for autism until 1991. Just one year later, the spike in diagnosed autism cases began. Traumatic brain injury was added to the department’s list the same year, and has increased by 5,000 percent among school-age children since then. “To my knowledge, no one is suggesting that there is an epidemic of traumatic brain injury,” Grinker said. Prior to the 1990s, he added, many children on the autism spectrum were likely diagnosed as mentally retarded or having other developmental disabilities.

Increased awareness and services: When Grinker’s daughter was diagnosed in 1994, there were few services available to children with autism. Indeed, she was originally classified as having “multiple disabilities” because her school had classrooms for children with that code, and nothing for kids with autism. Today, there are entire schools and classrooms within schools devoted to providing services for children with autism—along with a proliferation of advocacy and research organizations, such as the National Alliance for Autism Research, Autism Speaks, and Cure Autism Now. Parents of children with autism, who demanded the services their children needed and educated their communities, have revolutionized the way in which educators and the medical profession look at autism.

Earlier diagnosis: In the past, it often took several years and multiple consultations with different specialists before children with autism were correctly diagnosed. Today, children are diagnosed with autism as early as age 2, and even earlier. From 1992 to 1999, the National Center for Health Statistics figures for autism diagnoses only included young people ages 6 to 22, but beginning in 2000, children age 3 and up were added, more than doubling the numbers.

“The bottom line is that reported autism prevalence has increased, but the real prevalence has probably remained stable,” Grinker wrote. “Given how much more rigorous and sensitive the methods are today than just a decade or two ago, we should probably believe the newer, higher rates and question the older ones. But this does not mean that autism, as a disease, is more widespread. We see it differently. We see it more. And if we were to take our methods and go back to a time in the 1950s when autism was said to occur in only 3 in 10,000 live births, we’d find much more autism than anyone at the time thought existed.”

It’s a controversial conclusion. Thousands of gallons of ink have been spilled in the debate over the causes of autism, as well as how the complex interplay of genes that appear to confer an added risk for the disorder—scientists now believe there may be four to six major genes involved, and as many as 20 to 30 others that might contribute to a lesser degree—is affected by environmental factors, such as the mercury found in vaccines.

But Grinker believes that although environment may play a role in autism, it’s a small one. “First, if there are identical twins and one has autism, the other one almost always will too, to some degree,” he said. “Second, autism doesn’t seem to afflict people in some environments and not in others. And there is one very good reason to believe that vaccines and mercury are not implicated in autism: Since the mercury-containing preservative in vaccines, thimerosal, was removed from childhood vaccines in 1999 in Canada and Denmark, there has been an increase in autism every year.”

A World Perspective To better understand how we think about and treat autism in the United States, Grinker decided to take a classic anthropologist’s approach: He studied how autism is thought about and treated in other countries. Traveling to India, South Africa and South Korea, he sought out parents of children with autism and organizations serving those children and their families in the hopes of understanding the non-Western perspective on this confounding condition.

“We still know so little about autism outside of non-Western cultures,” Grinker said. “Did it even look the same? Do people with autism have the same symptoms? Do the children and adults look the same? What happens to people with autism in those cultures? Are they better off or worse off than they are here?”

Autism is the same everywhere in the world, Grinker concluded—but the difference is in how cultures respond to it. “There are some places in the world where children with autism don’t seem to be treated very well, and others where they are,” he said. “One of the biggest variables is how much one’s children relate to one’s social status—how much what happens with your children creates stigma or honor for you. So if you live where a child is expected to go to work on your farm and help you out, children with autism can work on the farm and there’s a lot for that child to do, so he can grow up and become integrated into the community. In a society where the only measure of success is whether you go to university, then they’re going to disappoint you.”

Remarkably, autism awareness has penetrated into surprising areas, Grinker found. In Cape Town, South Africa, for instance, when Golden and Suzanna’s son Big Boy stopped talking and began avoiding all eye contact at age 2, his parents were advised to take him to a traditional Zulu healer, a nyanga. They resisted at first, but finally Golden’s parents hired a nyanga on their own, who surprised them with a diagnosis of autism. He didn’t attribute the condition to genetics or an environmental toxin, however, but to punishment by Golden’s ancestors for some transgression.

Just as in the United States, increased awareness of and services for autism in non-Western nations has largely been spurred by the determination and devotion of parents. In Delhi, Merry Barua’s son Neeraj was turned away from the private schools to which most middle-class Indians send their children. He screamed constantly and smeared himself with feces. So Barua built a school for her son instead. The Open Door school now has about 60 students, offers counseling, diagnostic testing and referral, and remains the only school for children with autism in all of Delhi. Barua also directs the Action for Autism National Centre for Advocacy, Research, Rehabilitation and Training. In 1999, she and an army of parents convinced the government of India to recognize autism as a disorder.

But autism is still often misdiagnosed in these countries, Grinker said. In India, he writes, “From the pediatrician’s perspective, giving an autism diagnosis serves little purpose. Since there are no services, schools or treatments available for children with autism, the diagnosis would bring only pain and stigma.”

There, he said, the tendency is to classify children as either normal or mentally retarded—perhaps because physicians believe parents cannot understand autism, but can understand mental retardation. In Korea, on the other hand, children with autism are often diagnosed with Reactive Attachment Disorder—a very different condition from autism, but one that is considered “treatable,” where autism is not.

‘Different Kinds of Minds’ In rural South Korea, Grinker found two children with autism—one a 16-year-old boy, the other a 9-year-old girl—who were well known in their mountainous region and well integrated into the community. The boy delivered messages by bicycle and saw a doctor periodically for medication that calmed his anxiety, while the girl went to a special school for children with mental disabilities. “In these villages, you can find proof of something the World Health Organization has been arguing for years: People with mental disorders do better over time in remote, non-industrial societies than in urban, industrial ones,” Grinker said.

“We don’t want to emulate many aspects of Korean society, in which the effort and energy that one gives to the autistic child is seen as taking away from the child who really has the chance to go to Seoul National University,” he cautioned. “But there are positive models, like what I found in some parts of rural South Korea, South Africa and among the Navajo, where people with autism are not necessarily viewed as abnormal, but just different and in some cases even closer to god.”

Viewing autism in other cultures showed Grinker just how far the United States has come in understanding the disorder. “The great advances that we have made in understanding autism, creating awareness, and making better educational opportunities for people with autism have come about not so much because we’ve learned more about autism, but because our culture has changed,” he said. “We don’t have the same stigma on people with mental differences, and we appreciate multiple intelligences much more. We’ve finally started to extend the concept of ‘diversity’ away from just thinking about it in terms of race and ethnicity, but also to include different kinds of minds.”

This article is the first in a two-part series on autism. The second article, to be published in the May 2007 Medical Section, will focus on the opposing argument that environmental and other factors have contributed to the exploding increase in autism cases and will examine various treatment options.

About the Author

Gina Shaw is the medical writer for The Washington Diplomat.