Given this conversation the other day, it was a little stunning to see a similar statement in an article that is supposedly about ending bias based on ‘functioning level’. The article is called Calling a Truce in the Spectrum “Wars”, by Michael John Carley. Here is the statement:

The problems people face aren’t lessened or heightened by “placement” on the spectrum. They are just different. Think about it: the higher the functioning level, the more the potential for awareness increases. So, I’m certain that when all the facts are in, the higher suicide rates will line up along the spectrum in a pattern that mirrors functioning level. Severely-affected folks aren’t generally self-aware enough to want to consider suicide.

I have known many autistic people who were considered severely affected and considered suicide. I certainly considered suicide when I was labeled severely affected. I have read things by many autistic people who attempted suicide, albeit sometimes ineptly, while labeled low-functioning and severely mentally retarded and so forth. One of the common reasons was not having our awareness of the world recognized, having it assumed that we were not “self-aware”, and knowing what the future had in store based on other people’s treatment of us.

Some of our suicide attempts are so inept that people don’t realize they’re suicide attempts. Some of my head-banging at a certain point was because I thought if I did that long enough I’d die from it. I have taken small amounts of pills honestly thinking they were enough to kill me. I know of an autistic person, who was labeled low-functioning at the time, who tried to fight taking his migraine meds thinking that maybe the migraines would kill him. Do any of these get classified as suicide attempts? Not really.

Which leads me to the question: How are the suicide rates in autistic people, particularly those without a communication system that others understand, measured?

When an autistic person “wanders off” and dies in traffic or of exposure, or “accidentally” drowns, or any of a number of other unpleasant deaths, how does anyone know this was not deliberate? I mean, it can never be known one way or the other. But why does everyone assume that some of us are simply incapable of even conceiving of suicide, and that they can tell, by sight, which ones we are?

I don’t think a suicide rate will ever be able to be measured, because most such deaths, like many of our actions, will be ruled accidental, not possibly having anything to do with conscious will or decision. And some of them will be accidental, but some of them will be suicide.

I do not say this because I think autism is a good reason to kill yourself. But I would be a fool not to acknowledge how hard society makes it to live a good life and imagine a good future for yourself when you are an autistic person. The pressures are very real. The pressure to see your life as lesser and not worth living is very real too. And it does a disservice to those labeled low-functioning to say that they/we/whoever-is-in-that-category-at-the-moment are going to be automatically less self-aware, less capable of thinking of suicide. (As far as self-awareness goes, it seems independent of ‘functioning level’ as far as I can tell. I also don’t think that full self-awareness leads to suicidality.)

This is not an attempt to engage in the “suffering competitions” that Michael John Carley is writing about. It’s more to say, a lot of ideas about those labeled low-functioning or severe, are not accurate, and being regarded the way Carley regards some people, even though he clearly does so with no malice, is part of what causes some people’s suffering to begin with. I suspect the suicide rates, as well for that matter as the ‘self-awareness’ rates, are similar across the ‘spectrum’, except that some people will be unable to complete suicide due to lack of knowledge of how to do it or lack of control over one’s own actions. When some of us despair, our actions are not considered the result of despair, but merely inexplicable behavior problems, or “accidents,” or other things like that. This does not mean we are any less capable of despair than the next person.

I agree with Carley that we should not be fighting based on “functioning level”. But at the same time, as long as “high functioning” people are going to be misrepresented one way, and “low functioning” people are going to be misrepresented another (that Carley actively engages in), there is going to be unnecessary friction.