What’s in a name: The “Hidden Horde,” TV, and a Diagnosis Called Autism
October 20, 2006 by Kristina Chew, PhD
Filed under Health
Did autism exist before we called it “autism”?
I have been wondering about this after reading yet another article about the “rising rates of autism diagnoses in America’s children” (see Ped Med: Counting on autism counts, October 19), and also because, being a Classicist, I think constantly of the world of the ancient Greeks and Romans. Just as, I constantly think about autism—-with the result that, I would like to find out if autism has always existed, even before we gave it the name “autism.” (See my rather fanciful post, Top 10 Reasons Why Socrates May Have Been Autistic.)
Three things—a book, a blog, and a research study—have spurred my thinking.
Roy Richard Grinker in Unstrange Minds: Remapping the World of Autism (forthcoming early 2007) notes that we now talk about autism and consider it “new” because “…over the past century we’ve described mental disorders more precisely, differentiating one from another, and giving them names” (p. 51)—-because we have a name for “autism.”
Did autism exist “before it had a name”?
Yes …..there were people who, today, we would call autistic; no, in the sense that the concept of autism as a distinct illness didn’t exist and we didn’t see it. We saw epilepsy or schizophrenia, mental retardation or brain dysfunction, but not autism. Autism also exists today without a name. There are still cultures in the world today that do not have a name for autism, or that do not even see as pathological the symptoms we call autistic; there are the so-called “marvelous children” of Senegal, called “Nit-ku-bon,” or the Navaho Indian children with autism in the American Southwest, who are seen simply as perpetual children. (pp. 51-2)
As Grinker writes, we talk about autism—we see and identify a person as having autism—because we know that something called “autism” exists (as defined by the DSM-IV). Autism Diva’s October 19th post is entitled Mark Blaxill and the Hidden Horde, Blaxill being a board member of Safe Minds who “asks the pithy question: if autism has always been here, at the current rate where are all the older autistics? Where’s the ‘hidden horde’?”. Autism Diva notes that
………… lots of them are dead. They died when they were put out of institutions. Or, they died in the institutions when they were kids or maybe as adults. They died in institutions when they were given anti-psychotic drugs and then they inhaled in their own vomit, they died of other side effects of the drugs. They died of just lousy health-care. But some of them survived and are now living on the street, in jails, or in group homes.
Some autistics born pre-1980 were able to “pass” for normal well enough that no one thought to put them in an institution, or they were born into families that couldn’t cope with the idea of giving up their child to an institution.
Autism Diva mentions an over 60-year-old autistic man; she mentions 56-year-old Alan who is featured in a documentary, Without Apology, by his sister, Susan Hamovitch. And if there are many other autistic adults whose names we do not know, this may well be because when they were younger, we did not see autism as we do now. We were not as aware of autism; we did not know that autism is the name for a certain “distinct illness.”
56 and 60 year old autistics would have been born in the 1950s, before the 1970s and 1980s, which is the time that Michael Waldman notes was when “early childhood television viewing probably experienced a gradual increase” (Does Television Cause Autism?; the growth of cable TV is cited, along with the observation that “a number of channels targeted directly at children were introduced in the late 1970s and early 1980s including Nickelodeon (introduced in 1979) and the Disney Channel (introduced in 1983)” (pp. 11-12) ). If it is not from watching TV, how might these adult autistics have become autistic?
Or might they have always been autistic, only by some other name?
Diva’s post hit me in the gut- it was an appalling reminder of how many forgotten & “disappeared” people our own society generates. This post of Estee’s also addresses this issue & the first video there had me in tears. I volunteered at a centre for mentally retarded children during my high school years in the early 1970’s & I am convinced that there were children that I worked with who would now be classified as autistic rather than MR. I can’t wait to read Grinker’s book…
Just discovered your blog. I, too, live in St. Paul and have an autistic son named Charlie. He also has cerebral palsy and other learning disorders. I often tell people that while having Charlie means more tears, we have not missed out on any of the joy of having a child. You clearly feel the same about your Charlie. God bless. I’ll be reading your blog often.
Barb, so great to “meet” you—–we live in New Jersey now but spent two wonderful years in St. Paul. (I used to teach at the University of St. Thomas ; Charlie was diagnosed at the Minneapolis Children’s Hospital.) How olf is your Charlie? It’s tears and joys, yes, and so often all together—
Flagrant self promotion I know, but it may just give you a giggle if you also have a warped sense of humor – check out ‘the dreaded telly’ – http://whitterer-autism.blogspot.com and see if we have any common ground. Cheers.
Barb, Very good to hear from you! How old is your Charlie?
I would be interested to know how many people that have been described as ‘recluse’ or ‘hermit’ were people who just decided that ’society’ was more trouble than it was worth. Best wishes
Sometimes I wonder what might happen if the whole “history of the world” were rewritten with autism in mind.