Recently, Autism Spectrum News spoke with anthropologist and author Roy Richard Grinker, PhD about his fascinating research on autism in other cultures and his thoughts about the view that there is an epidemic of autism. Dr. Grinker is Professor of Anthropology and the Human Sciences at the George Washington University and editor-in-chief of The Anthropological Quarterly.
Q: How did you get interested in studying autism in other cultures?
A: Because I am both an anthropologist and the father of a girl with autism, friends started asking me impossible questions. “So what’s the prevalence of autism in Tahiti?” “How do the Pygmy hunter-gatherers of Africa treat autism?” Despite the growth of autism awareness in the world – there are autism societies in 92 different countries – we still know little about autism across cultures. Although most researchers expect that the onset and core symptoms of autism spectrum disorders are uniform across cultures, this is really just an assumption. We do not even have reliable estimates of autism prevalence for any country in Africa, South America, Latin America, or Asia (with the exception of Japan). I decided to travel to a range of different countries and find out what was happening there. Those trips form the basis for my book, Unstrange Minds.
Q: In what countries have you looked at developmental disabilities, and autism in particular?
A: I’ve been to India, South Africa, South Korea, and the Democratic Republic of Congo. In these countries, autism is becoming a more popular diagnosis for kids who used to have other diagnoses, like “brain disorder” or “madness.” Some of this change is due to a decrease in stigma, a decrease for which Americans are, to some extent, responsible. American charities have played a big role in changing how people throughout the world think about people with language and social deficits. In South Africa, a Zulu witch doctor diagnosed a boy with autism. He had learned about autism from the Internet.
Q: You’ve been traveling to Korea often. What’s happening there?
A: Korea is both fascinating and sad. Because Koreans understand how large a role genetics plays in autism, parents are afraid of what an autism diagnosis would mean to their families. The lineage would be tainted; the others in the family might have a hard time getting married. For who, they ask, would want to marry into a defective family? In Korea, unfortunately, most people think that “genetic” always means “familial” or “hereditary,” which, of course, it doesn’t (de novo mutations probably play a significant role in autism spectrum disorders). But Korean parents, especially moms, insist that the child’s developmental problems are their fault, that they are just bad parents. The doctor gives therapy to the mother more often than to the child, since what we would see as “autism” is diagnosed as Reactive Attachment Disorder (RAD), which is glossed in Korean as “lack of love.” RAD is sometimes diagnosed in the U.S. too, but usually only when there’s clear evidence of pathological caretaking.
Q: The Korean doctors believe this too?
A: Yes, the diagnosis makes sense to many Korean physicians, and they know the parents are more likely to accept it. First, parents and doctors think autism is extremely rare. Second, there’s something the parent can do; she can learn how to interact with her child. Third, Koreans think genetic disorders can’t be cured, but a lack of love can be changed with better parenting skills. Fourth, the diagnosis helps explain a belief in Korea that the rapid social changes, especially working moms, are having a negative effect on children’s brain development. If we do see an increase in autism diagnosis, or have reliable estimates of autism prevalence that exceed local expectations, things may change for the better, just as it did in the U.S. But for the time being, “Reactive Attachment Disorder” is a common diagnosis for kids you or I would think have autism.
Q: Can you explain what you mean by “better”? Higher prevalence can be a good thing?
A: Higher prevalence can mean that more people are getting identified. It doesn’t always mean there’s more of a disease. Prostate cancer rates, for instance, soared after the first blood test for the prostate specific antigen was developed in the late 1970s. Before that time, doctors could only screen for prostate cancer by doing a biopsy of the prostate, and so they usually screened only those people who already had symptoms. With more diagnoses came treatment of early stage cancers that never would have been diagnosed before. The cases entered into the pool of people with the disease, and so we saw higher prevalence rates but not necessarily a true increase in incidence. The same is true with autism. More kinds of cases are today called “autism,” more mild cases are called “autism,” and it’s diagnosed earlier than ever. This has had a positive impact because of increased awareness, and increased intervention at very early ages.
Q: Is this why you challenge the view that there is an epidemic of autism?
A: I challenge the idea of an epidemic because there are no data to support a claim of an epidemic. Epidemics are not necessarily defined by higher prevalence rates. Take Fetal Alcohol Syndrome, for example, which increased dramatically during the 1970s and looked like an epidemic. That’s because FAS didn’t exist before that time. It didn’t exist because the classification had not been established, and once it was established, physicians started making the diagnosis more and more. But FAS wasn’t really new. No one could possibly argue that pregnant women started drinking only in the mid-1970s.
Q: Then how are epidemics defined?
A: By higher incidence rates. Prevalence is the proportion of cases in a certain population at a certain time. But incidence is the rate of new cases over time. And the fact is that we do not know the incidence of autism, and the fact that we don’t know is understandable. To determine incidence you need to determine disease onset, and the emergence of ASD in early childhood is insidious. Of the few studies that have examined incidence, the date of first diagnosis is usually used as a proxy for onset of the disorder and that’s a serious limitation, especially since age of diagnosis varies so much.
Q: What do we know about the reasons for the changes in prevalence?
A: We may not have data to suggest a rise in incidence, but there are data that suggest there are many factors behind the changing prevalence, all acting together. Prevalence was affected by more aggressive epidemiological studies using better screening and diagnostic tools; the criteria broadened to include a whole spectrum of autism; studies began to count as “autism” cases that, in the past, would have been excluded, namely, autistic symptoms caused by an identifiable medical cause. Diagnosis was affected by the broadening of the criteria, earlier diagnosis, later diagnosis (teens and adults), diagnostic substitution (in which autism replaces a previous diagnosis), and the addition of an autism code in 1992 in the American public schools, which led to many more autism classifications.
Q: You’ve interviewed a lot of doctors. Is there any disagreement among them about what is and is not an ASD?
A: It’s important to remember that the criteria and diagnostic guidelines for autism are made by consensus of experts, not by a laboratory test. Autism is whatever scientists decide it is at a particular moment in medical history. Having said that, the biggest disagreement I’ve seen is between researchers and clinicians. Researchers are pretty strict, but clinicians do what’s best for the child, even if it means making a diagnosis a researcher would disagree with. Judith Rapoport, Chief of Child Psychiatry at the National Institute of Mental Health (NIMH), told me she’d “call a kid a zebra” if it got him the services he needed and deserved.
Q: How has autism awareness had an impact on your daughter Isabel?
A: Autism awareness has made so much difference for Isabel, and I’m sure for other kids. When Isabel was younger, I’d get so nervous calling a dance or music instructor for Isabel, or a summer camp, because people thought of autism not as a spectrum but as a single thing. The classic image was of someone completely unreachable and nonverbal. I knew they’d respond by saying, “Autism. . . well, we don’t really have the ability to deal with that here.” These days, I still get nervous, but not as much. Recently, I contacted a volunteer coordinator at a zoo to find out if Isabel could participate. When I said she was autistic, the coordinator, “That’s ok. We should meet and figure something out.” I was stunned. This would not have happened 10 or 15 years ago. So she ended up working at the zoo, and I think she did better at her job than a non-autistic person would have!
Q: What did she do?
A: She was in charge of making sure the 5-year-old campers didn’t get lost on their tours around the zoo. I was skeptical of her ability to do this, but Isabel loves collections. She has Thomas the Tank Engine trains, American Girls dolls, Pokemon, Disney characters. Nothing ever gets lost from those collections, and she treated the kids in the same way. They were probably never safer.
Q: So what is next for you?
A: Right now, I’m finishing up the data collection in South Korea for my study of autism prevalence. The work is funded by Autism Speaks and my co-investigators are Young-Shin Kim (Yale), Yun-Joo Koh (Korean Institute of Child Social Development), Eric Fombonne (McGill), and Bennett Leventhal (Illinois). I hope we will report our finds of autism prevalence in South Korea by the spring of 2009, and though I cannot say what we found, I can say that the prevalence will be higher than Koreans expect.
Roy Richard Grinker, PhD is Professor of Anthropology and the Human Sciences at the George Washington University and editor-in-chief of The Anthropological Quarterly. The author of Unstrange Minds: Remapping the World of Autism (NY: Basic Books, 2007) he is currently completing a prevalence study of autism spectrum disorders in Seoul, South Korea, funded by Autism Speaks. In December, 2008 Library Journal selected Unstrange Minds as one of the “30 Best Books” of 2007, and it received the 2008 Ken Award from the National Alliance on Mental Illness for “Outstanding Literary Contribution to a Better Understanding of Mental Illness.”