Things that bear repeating.

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Autistic Conjecture of the Day made a post called It Bares Repeating quoting an article which reads, in part:

Some people with ASD are very bright intellectually, she said. They can be socially isolated but able to take care of themselves. It can be hard for them to keep jobs and friendships.

Others with ASD can have mental retardation. They might not be able to speak, and have difficulty with handling their daily living.

I suppose my reaction to these kinds of things bears repeating too: Not quite.

I still haven’t figured out quite what an intellect is. But I am pretty sure that the assorted ways of thinking that non-autistic people view as intellect, in me, range unpredictably from non-existent to fairly bright and everywhere in between. They’re simply not static traits, or anywhere even close, and judging me by any “level” I appear to be at at any given time, is not going to be accurate at all.

In addition to this, even if I’m at my “brightest”, I can’t speak, and I have lots of difficulty handling my daily living. For that matter, even many autistic people with very good speech and consistently high tested IQs can have lots of difficulty handling their daily living, and many autistic people without much speech and with lower tested IQs can do a lot of daily living tasks.

I’ve often told service providers that trying to equate autistic people’s “functioning” with IQ or related concepts, is like trying to do the same thing with cerebral palsy. Autism and cerebral palsy are not defined or measured by IQ. IQ is not even part of the definition. A person can be classified as severely disabled, with either autism or cerebral palsy, and still be classified as highly intelligent.

By people who do all these classifications this way, of course. Ugh. This is not my own language I am speaking. It gets tiring to add disclaimers saying “This is shorthand. This is bad shorthand from a model of disability I don’t even believe in. Please do not take my words as meaning that I believe a lot of the assumptions that usually go with these words. I don’t know better words.”

But why is this stuff important?

Services for autistic people in many areas have IQ cutoffs because of the mistaken belief that “functioning level” (a problematic concept) and “intellectual level” (another problematic concept) are identical. Even many areas without IQ cutoffs still have unofficial ones, they’re just not likely to okay services to someone who looks “high functioning” to them.

Truly, my father and I have been through Hell and back in trying to fight for my rights. And the fight just never seems to totally end, especially in light of the fact that the State of Colorado has refused to provide me with services for the developmentally disabled. They have declared that I am NOT developmentally disabled because their “experts” found my intelligence levels to be far too high for their standards on tests that I took independently just as recently as November 2000!!! For pity’s sake, I was classified as developmentally disabled in New York – did moving 2000 miles somehow magically change that? So what if my IQ is too high – what about my many deficits and needs for total assistance in the areas of daily living and survival skills as a result of several disabling conditions which are classified as developmental disabilities under federal law???? It seems that one needs to be retarded in this state just to be able to get on waiting lists for necessary services, or is perhaps the system retarded that sets up IQ or lack of it as a measure of developmental disability and need? I have to wonder at the motives of people who challenge either my intelligence or my disabilities… exactly what do they want me to be???? I have already jumped through countless fiery hoops to get to where I am today. I am honestly sick and tired of being treated as a human guinea pig or lab rat … it is a clear violation of my human rights and one that MUST stop NOW!!!! What exactly will I be asked to prove next – that I am actually HUMAN????!!!! YEESH!!!!

That’s a quote from To Have a Voice is to Have a Choice by Sharisa Joy Kochmeister. She has autism, cerebral palsy, and epilepsy, and is regarded by most people as low-functioning. Before learning to type, her IQ was measured as 10. She learned to type (which included some grueling tests of whether it was really her or not) . Her IQ magically became 142, and she magically became viewed as too high-functioning for services, even though, besides typing, things remained very similar in terms of ability.

Nothing will convince her state that she is disabled enough to need services, because these attitudes are perpetuated.

The flipside, of course, is that many autistic people — and people in general — who have a lot of trouble with daily living skills and speech, are thought of as being that way because we don’t really have much if anything inside us at all, and certainly would never be capable of intellectual discussions such as the one I am engaging in right now. (If you ever think of someone as essentially empty inside, try being considered empty for awhile and see how you feel.)

Sharisa Kochmeister and I are not the only two people in the world who encounter these damaging assumptions on a regular basis, from both sides, either underestimated or overestimated but rarely seen for who we are. In fact, most autistic people encounter them. Which is why defining the two “types” of autistic people in that way is quite irresponsible on the part of whoever wrote that article originally. The world of autistic people simply does not work in such a neat and tidy (for non-autistic people, who don’t have to live in the mess that this “tidiness” creates) way.

This, also, bears repeating.

Tags: autism functioninglabels hierarchies services sharisakochmeister nonspeech iq fc

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

3 responses »

  1. Hey – glad you visited my blog. I appreciate your insights into the prejudices and assumptions made in virtually all autism articles out there. Whenever I find something new in the media, even when I agree with certain premises, there is always some sort of generalization with biased language that is offensive. My son is not diseased, and not being able to speak is not a sign of intellectual inferiority. When I first was given the “IQ of 40” speech, I balked. As a teacher, I work with low intellectually functioning kids frequently…and it was obvious to me that his inability to follow directions/imitations – the criteria for this IQ test – were functions of sensory processing, not intelligence.

    The world has a lot to learn when it comes to perceiving instead of projecting. BTW, I have quoted you many times to people I have working with Jakie. You are a great inspiration to me – may my son one day have as great a command of language as you do!

    -Susan

  2. I know I’m replying a year late so Susan probably won’t see this but: there seems to be a problem in general where not all psychologists (SOME but not all) take disabilities sufficiently into account when giving out IQ tests. For example, I have known deaf people who were diagnosed as retarded/low IQ because they couldn’t understand spoken instructions. Admittedly this was often before they were diagnosed as deaf, so the tester didn’t necessarily realize there was a problem. But you would think they would double check for the various types of common disabilities before administering IQ tests. Then, if the kid does have a disability, it should be the psychologist’s responsibility to read up on that disability (the most recent information, not whatever they remember from their training 15 years ago) and investigate how to APPROPRIATELY adapt the testing situation to that disability, or whether IQ tests have even been “normed” for people with that particular disability. (“Norming” means, a study has been done to see whether a particular test is even valid with a particular population of people — for example, if you develop a test with a group of white male middle-class college students, will that test still measure pretty much the same thing in the same way with poor black women in their 40s?) So a deaf kid might need to be referred to a psychologist who can sign, and if they haven’t had much exposure to language yet then maybe they should be given a non-verbal IQ test. Or an autistic child might need … well I don’t know enough to say, but clearly something.

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