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

I am a mediocre hammered dulcimer player. I’m not horrible, but I’m not that great either. One time, I was in downtown Santa Cruz, and I saw Michael Masley playing. The hammered dulcimer is a stringed instrument that’s normally played by striking the strings with two hammers, one in each hand. Michael Masley plays it by strapping hammers to all of his fingers, including ones that can strike, bow, or pluck depending on how you use them. I stopped to gawk. Eventually, I told him, “I play. But not like that.” He stopped playing and let me look at his hammers.

I wish I could play like Michael Masley. I often imagine myself playing like Michael Masley. But I’m not Michael Masley, or anywhere in his league in terms of talent, and I know that even with practice I’m unlikely to be able to play well with ten hammers instead of two.

This doesn’t bother me too much. Nor does it make me different from all the people who wish they were like Michael Jordan and know they’re never going to do more than shoot hoops in the driveway or watch basketball on TV or imagine basketball games. Most people in the world have things they wish they could do and couldn’t, even with lots of training and practice, do. Most people in the world dream in this way, and most know that it’s a dream, and know how to incorporate bits of it into their lives and go on with their lives without being miserable because they don’t match their dream.

I’ve noticed something, though.

Most non-disabled people understand how I feel about Michael Masley. They don’t feel sorry for me, they don’t expect me to make myself miserable trying to be him, or anything like that. They understand that I enjoy playing, even if I can’t do it the way he does. And they would also understand if I had absolutely zero interest in his kind of expertise, or in the hammered dulcimer at all. I know very few people who even play it or want to play it. And some people even regard it, or at least some of the kinds of music I play on it, as sort of embarrassing. They regard my attitude towards Michael Masley’s talent, as well as other people’s total indifference to that kind of talent, or that kind of instrument even, as mature and responsible.

My biggest forms of recreation used to be long-distance walking, riding my bike, and climbing things, especially but not limited to trees. I had excellent endurance and the kind of ability to climb and balance on things that some autistic people are famous for. I enjoyed sitting up in trees. I enjoyed walking on fences. I enjoyed exploring and mapping things out as far as I could go.

These days, I can’t walk even as far as the average person can. I’ve lost many of the motor skills that gave me the not-even-think-about-it climbing ability that I used to have. In fact, a lot of the time I can’t move at all. And riding bikes is outright dangerous.

This is what people seem to feel sorry for me about. But I don’t regard it as any different than Michael Masley. Yeah, it’d be nice to do things that used to be my main source of entertainment, but I can’t, and I don’t feel too bad about not being able to.

I said that they call my attitude to Michael Masley, when they have any reason to call it anything at all, mature and responsible. And they don’t even have occasion to call it that, really, because it’s expected that most people will at some point reach that level of maturity and responsibility.

But what do they call my attitude towards long walks and bike rides and climbing stuff?

They call it giving up.

They call it irresponsible.

They call it wanting to be an invalid.

They call it throwing my life away.

They encourage me to make my life utterly miserable until I can do these things, rather than doing the things I can do, learning the things I can learn, and so forth. I’m supposed to, instead of living my life, sit around waiting and mourning something that I don’t really see a need to mourn in the first place. If I did that about not being Michael Masley, I’m sure someone would tell me I’m being ridiculous. But because I’m disabled, not doing that is regarded as ridiculous. It’s expected that I should yearn to be “normal” above all else, and perhaps yearn to die if I can’t be that. That this attitude would be truly immature and irresponsible seems lost on most non-disabled people I encounter, and even some disabled ones.

I may fantasize about things like climbing trees. But then there are some other things I don’t fantasize about at all.

I don’t have any particular desire to be able to speak with my mouth.

I don’t have any particular desire to walk. And this despite the fact that I can and do walk some of the time. And even the rest of the time, when I can’t walk, I don’t miss it.

The more I learn about what biased cognitive scientists regard as “higher-order” thought, the more I’m actually glad that research is showing that it’s “optional” for me at best. (Not that there’s anything wrong with the fact that some people are designed to use it constantly. But I don’t want to be them any more than they seem to want to be me.)

I would fight anyone who tried to make me non-autistic.

People call all this, downright sick. They imagine that what ranges from lack of particular desire to do something, to outright hope that I’ll never do it, must have some deep and unhealthy subconscious motivation. I somehow never really see people who are indifferent or averse to learning hammered dulcimer skills (that they may or may not be able to learn) being treated in this way. But I’ve gotten hate mail and even death threats for my views on these things.

I don’t believe, by the way, that things just are how they’re supposed to be. That if I can’t get my wheelchair into a shop, I should just accept it. That if I’m treated with disrespect, I should just accept it. That if I am (or anyone else is for that matter) viewed as non-communicative rather than just non-speaking, I should just accept it. That if there’s something about myself that I can and should change, I should just accept it. That if there’s something I want to do, and is within my reach, but will take a lot of struggle, but is important enough that I really have some considered desire to do it, that I should just give up on it. And I’m not saying that being autistic (or any of the other things I am) is merely a lifestyle choice.

But neither should I accept being told in so many ways that I should be living my entire life as an interminable, nasty, miserable, no-holds-barred fight against my own body and brain. I should not accept that people view that kind of struggle as heroic, because it’s not. It’s not only self-destructive, it’s also destructive towards other people who are expected to take on that level of self-destruction as an inspirational example.

Someone wrote to me recently, imagining that much of my life is stolen or wasted or something. And I thought about how differently I viewed my life than she did. I didn’t even know how to put it into words. I still don’t.

I’m just continually amazed that people think happiness depends on certain particular abilities, and that those of us without them not only have no merit in the way we function in our own way, but should strive miserably and endlessly to be this one kind of person that we’re not. Many of the people who believe this might think twice if they had to live in a world controlled by people who thought that playing the hammered dulcimer was the most important skill in the world, that everyone should make themselves utterly miserable striving for.

Tags: music disability michaelmasley dulcimer nonspeech training hierarchies