My letter to Autism Speaks about the “autism epidemic”

Last Wednesday, January 17th, Autism Speaks put out a request for emails responding to the question “Is Autism an Epidemic?.” This request followed the publication of two articles outlining an argument for why there is no autism epidemic made in (in the words of Autism Speaks) “a controversial new book.” One article, Is the Autism Epidemic a Myth? appeared on January 12th in Time magazine, the other, Why there’s no autism epidemic, appeared on January 15th in Slate. The “controversial new book” is the just-this-week published Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker.

I emailed a letter to Autism Speaks late on Wednesday afternoon. Late yesterday night(January 22nd), nine responses (out of “dozens of replies” received “in the last few days”) were posted, an excerpt of mine the last one (it is noted “that selected responses may be edited for space, grammer and content”). While the webpage proclaims “Is Autism an Epidemic? Your Emailed Response – Yes, It Is!”, my response (sole among those posted) argues the contrary.

This is the excerpt of my letter posted by Autism Speaks:

I am the parent of a child who has full-blown autism. I believe that there is no epidemic of autism. We don’t need an “autism epidemic” to make a case for why we need the best education and services for autistic children and adults. We need the best education and services for autistic children and adults because they need them, period.

— Kristina Chew, Ph.D.

I have included the full text of my letter below, as this provides a more detailed exposition of why I wrote “I believe that there is no autism epidemic.”

January 18, 2007
To the Editors,

I am the parent of a child who has full-blown autism. I believe that there is no epidemic of autism. The prevalence rate of autism is at its highest ever—-1 in 166, but the prevalence rate is not the same thing as the actual number of persons diagnosed.

In his forthcoming Unstrange Minds: Remapping the World of Autism [now published], Roy Richard Grinker writes that “the prevalence of autism today is a virtue, maybe even a prize” (p. 171). We see so much autism because we know what autism is. We know that to be autistic is not to be schizophrenic or to be mentally retarded, though these conditions can be co-morbid with an autism diagnosis. Though it may sound odd to say this, it is good that we have become so aware of autism. I grew up with many individiuals (some very close to me) who I now realize are autistic. Had we known as much about autism as we do now, I believe that the pain, suffering, and misery that these individuals went through growing up might have not happened.

Because we know so much about autism, many more educational and school programs and services that are specifically designed for autistic children, and that work, have been developed that did not exist in the past. My son—who is minimally verbal, has some self-injurious behaviors, and is just learning to read—attends school in our town. He is in a very specialized classroom with incredibly well-trained teachers, aides, speech therapists, and occupational therapists. This program exists _in our town_ because parents and educators in our town know what autistic children need.

We don’t need an “autism epidemic” to make a case for why we need the best education and services for autistic children and adults.

We need the best education and services for autistic children and adults because they need them, period.

These programs and services need to continue to be supported and, indeed, there need to be more of them as we continue to learn more about autism, about more ways to teach autistic children and support autistic adults. Far from disagreeing with Grinker’s theory about why there is no autism epidemic, parents should read his book, and not only for his fine portrait of his daughter, Isabel. Parents need to read Grinker’s book because we need to understand how far we have come in understanding autism and how, by learning about how autism is perceived and addressed in cultures including India and Korea, how much we have still to learn.

Including that, there is no autism epidemic.

Sincerely,

Kristina Chew, Ph.D.

If one only reads what is posted under my name on the Autism Speaks website, one is not given indication of this, as no ellipsis (…) is included to indicate that my letter has been heavily excerpted. (During many years of teaching writing and composition to college students, I put especial emphasis on being sure that students had a sound grasp of the rules of citation among which is the necessity of indicating that one is quoting only a part of a text by using the ellipsis, which thus alerts the reader that something has been left out.)

Between “I am the parent of a child who has full-blown autism. I believe that there is no epidemic of autism” and “We don’t need an “autism epidemic” to make a case” etc., are two and a half paragraphs that seek to make a perhaps subtle, but illuminating, distinction, namely that, while the prevalence rate of autism is at the highest it has ever been (the familiar “1 in 166″ figure), this is not tantamount to there being an actual epidemic of autism. I thank Autism Speaks for publishing my excerpted letter; it is good to read responses (even if excerpted, for reasons, as noted, of space) from more readers. Of course, I am able to further explain my thoughts about whether or not there is an autism epidemic here, as well as to present the text of my original letter; to explain the ellipsis (though such was not was used on the Autism Speaks website).

I would further note that to describe Prof. Grinker’s book Unstrange Minds in terms only of whether or not there is an epidemic of autism is to consider only one part of a book that is about much more, from his lovingly composed accounts of his daughter Isabel’s life (a taste of which is apparent from the excerpt posted on the Autism Speaks website) to his accounts of how families the whole wide world over understand autism and seek to address their children’s needs. I hope that there will be more discussion of Prof. Grinker’s book, on the topic of the “autism epidemic,” and on “his portrait of the bigger picture of autism around the world and of how parents everywhere have found ways to help their autistic children” (as I wrote in What else can we talk about if there’s no autism epidemic?); on how, whatever your position on the “autism epidemic,” autism has become unstrange.

I thank Autism Speaks for publishing the excerpt from my letter.