Ever since Charlie was diagnosed with autism on July 22, 1999 (though we had known “something was wrong” months before), I have had more conversations than I care to count about “how do you account for the increase?” Why (to roll out the too-familiar figures) is autism being diagnosed in, for example, every 1 in 166 children when, two decades ago, the figure was 1 in 1000? Was it those vaccines—the mercury—”something” in the environment—genetics, simply, what about those studies about engineers in the family—what about eating tuna while one was pregnant? What about those mercury amalgam fillings? What about—what about—what about…….
After exhausting the list of external agents said to cause autism, I would always hear one last reason, offered as a kind of hurried afterthought, lest the person I was talking to not seemed well-enough informed:
“Well, maybe they’re diagnosing it better.”
Somehow, this explanation, often casually offered, grated on my nerves. I am not entirely sure why. Perhaps because the notion that “they’re just diagnosing autism better” opened an abyss of wondering in me: If it had not been 1999, what would “they” have said Charlie had? That he had childhood schizophrenia? That he was “simply” mentally retarded, slow, dim-witted, an “idiot”? Perhaps because there was a certain smugness in the notion that, in the past, we had been in the dark about autism and now, all was clear? Is more autism being diagnosed, is there more autism awareness, because—as my husband, Jim Fisher wrote in Commonweal magazine in 2000, because there is simply more autism?
“…is there really more autism or are we just seeing it more?” asks Roy Richard Grinker in Unstrange Minds: Remapping the World of Autism (p. 9). On October 1st I noted that Grinker’s forthcoming book provides some “real insight” about whether there is “really an increase in autism or …. have [we] expanded and changed our definition of what autism is.” Grinker’s book is a cross-cultural study of autism here in the USA and in Korea, India, South Africa, and many other countries. By seeing autism not as a biological disorder—as a biomedical disorder caused, for instance, by mercury poisoning—but as a global phenomenon, he shows how it is our culture that “affects how we view autism” (p. 11).
Grinker’s professional discipline of cultural anthropology provides a useful framework to understand autism in terms of the “complicated relationship between culture and biology” (p. 13).
Autism, like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it, and all cultures reponse to illness differently. (pp. 11-12)
It is not only—not simply—that “they’re diagnosing it better,” but that we as a culture are seeing autism better. That, instead of naming an individual who talks on and on about the Yankees and medieval heraldry as eccentric, or a minimally verbal 9-year-old child who cannot read and who does not respond to simple commands MR, we see these two individiuals as having certain similar traits—certain impairments in their communicative and social abilities, and certain patterns in their behavior—-that set them both on the autism spectrum.
Grinker further suggests that, although it is “likely” that “autism has existed among humans for at least hundreds of years” (and, me being a Classicist, I wonder if it might have existed for even longer), “until very recently no one thought to create a distinct category for it because our culture—our social, educational, and medical systems—was not ready for it” (p. 13). And while I suppose some might say that we are never “ready” for autism—-that autism is something we do not need to have, and ought indeed to eradicate and cure—-my own sense is that our culture is at least coming into being “ready” for autism. That we are “ready” for the diversity–the neurological and cognitive difference—of autism and of autistic persons.
Thanks, then, to Grinker and Unstrange Minds (which will be published in January of 2007) for helping me to understand how it is not only “they” who are diagnosing autism better, but that “we” are seeing, and understanding, and embracing, autistic persons better today.