Autism Vox

What’s in a definition?: The “A” word and the “R” word

by Kristina Chew, PhD on January 3rd, 2007

When “autism” is the subject, a lot of words can become charged with meanings beyond those usually attributed to them, as evinced in the responses to David Kirby’s use of terms like “high functioning,” “low functioning,” and “the neurodiverse” (or the “ND,” which initials I had previously associated with a certain institution of higher education.)

Today, January 3rd, an autism mom inveighs against this “movement” and goes head-to-head with David Kirby in elaborately detailing her “crappy or, rather, crap-filled, life” (I described one such messy episode in Charlie’s and my life here). Yesterday, in the January 2nd Huffington Post, Kirby goes so far as to redefine a word—”autism,” the “A” word—to not include children who (he claims) have been poisoned by various environmental factors. Kirby mock-seriously coins a new term (“Environmentally-acquired Neuroimmune Disorder” or “E.N.D.”—Joseph offers a look at this “new syndrome“) for children who do not have “autism” (understood as a spectrum including adults with Asperger’s).

Names—words—language—-mean a lot when the “A” word, and words associated with it, are under discussion. When told on the playground that “sticks and stone could break your bones,” did you ever retort “but names will never hurt me”?

“Retard” was one word I used to hear on the playground; it is a word that I have not heard so much of late (though what do I know: I don’t spend so much time on playgrounds these days; Charlie is almost ten years old and is not interested). I guess “retard” is a word that would have once been used to describe Charlie: Just today I read that the Connecticut Department of Mental Retardation is removing the word “retardation” from its name. Today’s Hartford Courant notes that “retardation” was the term preferred by advocates back in 1959 when the department was a small branch of Connecticut’s Department of Mental Health. The call for the name change was initiated by a self-advocacy group, People First; Connecticut had been one of 13 states in the US that used the term “mental retardation” in the title of an agency. The new name will be the Department of Development Services.

Not everyone in Connecticut is in favor of the name change, though. Some who disagree charge that “any change in the title of the state agency could diminish awareness of the disability” among the public and among politicians, while others feel that, as the “Department of Development Services,” those currently diagnosed as mentally retarded may receive fewer services because of a broadening of the population to be served by the newly renamed Department.

How you define “autism” can have a real impact on the services that a person can receive. Autism is specifically defined as a “neurobiological” disorder in a new law that New York Governor George Pataki signed last month. In a post last week, What Do You Say Autism Is?, I quoted from the December 2006 New York State Developmental Disabilities Planning Council, which noted that “this definition is important because some health insurance companies have claimed that autism is a mental health disorder and therefore not covered.” Anecdotally, I have heard of parents whose child was given a diagnosis of PDD-NOS or “mild autism” because this term seemed less harsh; I have also heard of parents whose child has a formal diagnosis of PDD-NOS and who have sought to have this changed to “autism,” which is considered a more “serious” diagnosis, and to provide a child with more services. And then there is the argument (presented in the forthcoming Unstrange Minds)—there are the statistics—that more children are being diagnosed than ever today because we are better at counting cases of autism; at diagnosing autism.

Kirby’s suggestion—however seriously he means it or not—that autism be redefined only attests to his limited understanding of autism and, especially, to how autistic children can change and learn through education and as they grow up into teenagers, into adults. We do not need to redefine what “autism” is, especially at a time when we understand it better than ever—rather than quibbling over words, we need to work to provide the best education and services for the people, the autistic children and adults, who are here with us today.

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POSTED IN: Adulthood, Diagnosis, Disability Rights, Education, Environment, Legislation, Medicine, Politics, Psychiatry, Psychology, Stereotypes