Suicide and autism ‘severity’

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I recently engaged in a private conversation with someone, where we were discussing various stereotypes of the ‘ends’ of the autistic ‘spectrum’. One thing I brought up was that someone had once told me that only ‘high functioning’ people consider or commit suicide.

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.

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.

11 responses »

  1. This one source I read regarding childhood onset bipolar disorder said bipolar 2 year olds have been known to kill themselves. Now, bipolar kids are said to have a higher rate of giftedness, but even a gifted 2 year old is believed not to have much concept of death. There are different aspects of understanding death and some studies have suggested that preschooler mostly view death in terms of “the person is gone” but don’t view it as irreversible and so forth. But still, the thing about feeling desperate and killing yourself can occur even as a 2 year old.

  2. I read that piece also, and I don’t think that’s what Carley meant at all. Carley was discussing probability, not exstinguishing possibility, when he talked about suicide along the spectrum (also, this was one paragraph out of the article). And I find it so indicative of our historically-embedded fear of success that Carley is such an easy target for our angrier autistics. This man is doing an awful lot for our community.

  3. He was talking about probability, but I think he was wrong about probability. I don’t think people regarded as low-functioning are any less likely to be able to conceptualize suicide than people regarded as high-functioning. In part because I’m aware of the fact that those two labels depend on a small number of characteristics, none of which are awareness.

    Characterizing people who disagree with a particular person (people who may, in fact, disagree in totally different ways from each other, and therefore cannot be easily lumped together) as “angrier” or “afraid of success” is not accurate and only serves to cloud the issues we bring up. Nobody, in my mind, has the right to freedom from disagreement, no matter how much they give to a community.

  4. Pingback: Ballastexistenz » Blog Archive » The “right” to freedom from disagreement.

  5. Mona, sorry, but I think you are quite wrong about “historically-embedded fear of success”, about the goodness or badness of anger, and, for that matter, about what really constitutes anger. You are being cavalierly dismissive of people you term “our angrier autistics”, who have laid the very foundations that Michael John (Carley) stands upon to do what he does — and which he quite freely acknowledges. I think you owe Ballastexistenz, and every autistic you think is “angry”, an apology.

    — Phil Schwarz

  6. What I think reasons for suicide to autistics and aspergers is – it’s more on what we see our future holds. When we think we are not able to get what’s most important to us, we will think of suicide. Each individual may have different reasons. One may by money, hard to get a job, got a job that we get unrecognised, bullied, considered slow, incapable. The others may be relationships, girl/boyfriend, loneliness, feeling easily bullied, cheated, ridiculed, laughed at.

  7. Go Amanda! I hate it when they make a person’s problem (others thinking they’re nto self-aware enough) worse instead of better by thinking that they aren’t self aware so they are trying to prevent them from “accidents” rather than suicides. It dehumanizes person. It’s treats them like an object… not even an animal or any living thing… an object. Inanimate objects have accidents. People have accidents too, but also commit suicide. These people just want to be regarded as people too.

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