Interview with Roy Richard Grinker: author of Unstrange Minds: Remapping the World of Autism

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There are many myths and much pseudoscience surrounding the diseases now called autism. Some have to do with vaccines, as the pieces by Steven Novella and Richard Judelsohn discuss in this special section. Other myths include the long-discredited practice of facilitated communication, in which "facilitators" help illiterate autistic children type out words and sentences--as well as occasional unfounded accusations of abuse. Yet many myths and questions remain, especially related to the prevalence and underlying diagnosis of autism.

In a new book on autism, Roy Richard Grinker (a professor of anthropology at George Washington University and himself the parent of an autistic daughter) examines the disease from a social and anthropological perspective. Here is an interview based on his book Unstrange Minds: Remapping the Worm of Autism.

How did you first become interested in the subject of autism?

I wear two hats. I am an anthropologist and the father of a child with autism. So, as autism awareness grew, more and more people said, "So you're an anthropologist, what does autism look like in other cultures? Is the prevalence the same as it is here? What do people do about it?" I wrote Unstrange Minds so that people can see that autism is universal and that autism awareness is increasing everywhere in the world. But the most important reason for writing the book--though this was not my original intention--was to tell the world a simple message: the increase in autism diagnoses is not a crisis but rather evidence that we're finally beginning to address a kind of human difference that has for too long been misunderstood, misdiagnosed, and mismanaged. More than six decades after autism was first described by Leo Kanner, we're finally getting it right, and counting it right.

Why do you challenge the idea that autism is an epidemic?

Because so many Americans and Europeans are in a panic that there is a true epidemic, and that if there is an epidemic there must be some new, identifiable cause out there somewhere to be found and eradicated. I thought I could articulate some of the cultural and scientific reasons behind the increase in rates and give a positive message: the higher rates are due to positive changes in the way we understand and treat neurological and psychiatric disorders.

If autism is not an epidemic, how did it come to be viewed as one?

Autism became viewed as an epidemic for the same reason there have been fears of epidemics of other illnesses: there is a dramatic increase in prevalence. But prevalence is just the number of cases counted at a particular point in time and is not evidence of true increases in a disease. The same happened with melanoma and prostate cancer. There were huge increases in prevalence in those diseases, because they were being diagnosed so much more (skin cancer, due to increased awareness and more biopsies of early stage cancers; prostate cancer because of the invention of the PSA blood test, as opposed to the painful method of inserting a tool through the tip of the penis all the way to the prostate). It really is confusing to see diagnosis rates of three or four in ten thousand twenty years ago change to rates of 1 in 150. On the surface it sounds frightening.

So it's the public's lack of understanding about the methodology?

I think scientists have not done a good job of explaining to the public that comparing these rates is like comparing apples and oranges. The rates in, say, 1980, were derived using a narrow definition of autism and using administrative statistics (mostly numbers of kids enrolled in programs under the category of "autism") at a time when autism was not a popular diagnosis. Today's rates are derived using a very broad definition of autism (people from the severely mentally retarded to people who marry and hold jobs and may even be college professors) and using reliable and valid measurements that have only recently been developed.

In Korea, where I'm doing an epidemiological study, we cannot even try to use administrative statistics, because autism is unpopular as a diagnosis. If you used the enrollment figures, you'd think autism was almost nonexistent in Korea. Yet, we're finding rates not out of line with the rest of the world. Second, the increased awareness has meant that people see autism more--the decreased stigma has helped too, since people don't hide their kids anymore. So it feels like an epidemic. But a feeling is different from science.

So what accounts for the apparent increase in the prevalence of autism?

They are described carefully in my book: new epidemiological methods yield many more cases; a much larger number of people are being diagnosed with autism today because autism is a spectrum that can include the profoundly mentally retarded person but also a brilliant scientist; more and more physicians are giving the diagnosis and then kids are being coded in the school system with autism (some epidemiologists who do records-based research then rely on the school records for their who were once called or schizophrenic or a host of are now being with autism. There is no sin: factor among all of these that trumps the others, but I think the least understood is the change in epidemiological methods.