Tag Archives: functioning

How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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Functioning

This is a particular label point that I am still working out. I know there are many people out there who dislike the high/low functioning labels, but I’m not sure if I agree with them or not. I do, however, seem to be gradually leaning in that direction.

At first my opinion of the labels was much like my opinion of most labels – very useful but sometimes used badly or the wrong way, but that’s hardly the label’s fault. Buuuut then I started thinking about it more.

First of all, I wondered where else “high functioning” is applied. The primary other area I saw it being applied was alcoholism, where “high functioning alcoholic” is apparently a way of distinguishing alcoholics who are holding down a job from, basically, winos. Even in that context I saw people occasionally mentioning problems with the label, and how it might make it sound like a high functioning alcoholic doesn’t have problems or isn’t destructive when, in fact, alcoholism hurts everyone, regardless of how well-functioning any given alcoholic happens to be. As labels go, it’s not so great.

So then I got to thinking about what use the labels might actually have. I mean, that does seem to be the central point. Can I find an actual, reliable use for high/low functioning? Even more so, can I find a use that outweighs any potential problems with how the label is used?

I never got past the first question. Part of the problem is that people on the autism spectrum tend to have a rather significant amount of variance in what are usually considered “normal” skills. As such, it is not uncommon for a person to be considered “high functioning” in one place and “low functioning” in another. It simply depends on what the viewer is looking for, which causes the labels to be of questionable meaning. As Emily Willingham puts it, “A good science geek knows that function is often a matter of environment, not a constant measure.”

So what do people mean when they say that someone is high functioning? As it turns out, there is a tumblr asking that very question! How useful. Here are a few of the answers people have given:

I met someone for coffee and he said “You’re the highest-functioning out of all the high-functioning autistics I’ve met.”
All he had seen me do at that point was buy coffee.
http://whatishighfunctioning.tumblr.com/post/13803531667/can-buy-coffee

If you are considered a physically attractive and verbal adult woman, then you automatically having passing privilege (and will be seen as a liar when you say you cannot do things), and you automatically will be considered high-functioning.
http://whatishighfunctioning.tumblr.com/post/12337002312/appeal

I once had my own experience with someone saying to me, “you must be very high functioning.” I was telling them about my recent diagnosis, and they were rather surprised by it. As far as I could tell, what they meant was “oh, I wouldn’t have guessed.” I know they meant it as a compliment, but I found myself very uncomfortable with the comment anyway. The assumption seemed to be that being on the autism spectrum is automatically a bad thing, so it’s nice to temper it with “high functioning.” Though that’s just a guess on my part.

As far as I can tell, both from my own (admittedly limited) experiences and from what I’ve seen other people say on the subject, “high functioning” is mostly about passing. It’s about looking normal. I can pass for normal. All I have to do is only interact with strangers in limited and/or carefully controlled circumstances, never go to parties, and not go out in public if I’m too tired or stressed to make eye contact. In fact, to the average random stranger, I do pass for normal – maybe as a little odd, but most of them wouldn’t guess that I’m an aspie. Of course, I’m aided by the fact that most people, through no fault of their own, have a limited and stereotyped idea of what autistic people “look like.” So because people are not immediately aware of the fact that I am on the autism spectrum, because it does not jump out in anyone’s face right away, that means I am high-functioning. Unfortunately, people also wind up with a number of ideas of what “high-functioning” is supposed to mean. So when they look at me and see “high-functioning” they then assume that I can do all of the other things that they associate with the term – things I cannot necessarily actually do.

Once people get to know me, though, my differences tend to stand out more and more. I can’t always maintain my social face. Sometimes I stim A LOT. Sometimes I get confused by things most people consider obvious. Sometimes I can’t stand to be touched. People who know what Aspergers is like can, and have, guessed that I am on the spectrum. Several times people have been surprised when I failed to live up to what they think “high functioning” is supposed to mean. As such, I am not entirely convinced about this passing thing.

In any case, I went along mostly waffling about my opinion until I stumbled across an article comparing “mild” autistics to “severe” autistics. It really only qualified, at best, as a preliminary study, but the results were interesting. That being, that those who might be considered “high functioning” actually struggled just as much as those who might be considered “low functioning” as adults, in terms of work and relationships. Which, of course, highlights one of the several problems with labelling someone as high functioning – the assumption that since they are so high functioning and all that, they don’t need much in the way of help or resources. That is a dangerous way to think, that clearly needs to be called into question.

There is also the inverse problem. When people see someone and view them as “low functioning” they often assume that the person must not be intelligent or have skills or have anything to contribute or say. Amy Sequenzia definitely has something to say about that harmful assumption.

So overall the label does, unquestioningly, have severe problems. Problems that seem to go beyond simple mis-use, and well into the realm of inherent, unavoidable issues.

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