Intellectual Disability

In my LEND studies this year I've heard quite a bit about the history of how, particularly in the United States, people with cognitive issues have been labelled and treated.

"Changeling" was one term, referring to the folklore idea that the human-baby must have been stolen away by supernatural creatures and replaced by one of their goblin-babies.

"Mental defective" was another brutal term, in use within the past century. With IQ tests, we began to categorize people into levels of defect: an IQ of 50-69 got you labelled a "moron", 20-49 was "imbecile," below 20 was "idiot."

Then came the term "mental retardation," intended to be more clinical and less pejorative, and less-pejorative categories of mental retardation as well (based on IQ and still in use today): mild, moderate, severe, profound.

Mental retardation, alas, has morphed into the casually-used yet incredibly cruel "R-word," and a new stew of terminology has been brewing: cognitive issues, intellectual difference, cognitive disability, intellectual disability. Until I started with the LEND course, I'd not been aware how much momentum the term "intellectual disability" has been gathering, but it's quite clearly the what's-next terminology. The American Association on Mental Retardation (AAMR) has become the American Association on Intellectual and Developmental Disabilities (AAIDD). (Even though the URL http://www.aamr.org still works rather than re-directing...)

And now it looks like the U.S. government has the prospect of officially catching up. On Thursday Nov. 19 in the U.S. Senate, Senators Barbara Mikulski (D-MD) and Michael Enzi (R-WY) introduced "Rosa's Law", modeled after recently-passed legislation in Maryland. According to a news release from the Autism Society of America,

this legislation would substitute the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.

I like it. I think it's a good direction.

I have to wonder, though, what's the next "R-word" that will stem from the term "intellectual disabilities." It's discouraging to see perfectly good words turn into pejoratives. "Bus", for example, a mode of transportation. "Short," which might be used to describe a story or a stack of pancakes. Put them together with a taunting tone to the voice, and "She rides the short bus" turns into yet one more episode of pain in our children's world.

It also strikes me that here I am talking about intellectual disability as if it applied to Joy... but what does that really mean? Certainly she'd not score very impressively on an IQ test at this point. But there's an awful lot that IQ tests don't capture, and autism and IQ tests have a particularly problematic relationship, something that I really probably ought to do some more reading about. Just for starters, there are so many stories of people with autism who were written off... and then eventually tapped in to a workable means of communication and began to share their amazing minds with the world. Is the relationship of difference to disability something other with autism than it is with other conditions?

In Friday's LEND seminar, we had a lecture about autism and genetics, in which one of the introductory slides on co-morbidities quoted a rate that 50-75% of autistic children have intellectual disability. Joy's umbrella condition, the linear nevus sebaceous syndrome (LNSS), has a classic triad of symptoms - nevus sebaceous, seizures, and intellectual disability - and her diagnosis was based on that triad.

Ah, so much we don't know...

But at least we can work on choosing the right, neutral/helpful-as-possible words to convey the best of what we think we know.

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This blog will now go on a brief Thanksgiving vacation. May your turkeys (or tofurkeys) be moist and tender, your gatherings uneventful, and your causes for gratitude too numerous to name!

See you next week!