9:21am April 27, 2012

Can we

Just do away with the idea of “high functioning” vs. “low functioning” autism?

I mean, really, what good does it do us to separate between the two and then have allistic parents say we couldn’t possibly understand what it’s like to have a kid with autism, because using the internet must mean that we’re high functioning? Or it brings out the Aspie elitists among us who think that having Asperger’s or High Functioning Autism is the next level of evolution?

Can we just… treat people as individuals?

I mean, I realize the educational system is fucked up. But IEPs (individualized education plans) do at least start out with a good basis — it’s individualized to each kid. Even if that doesn’t work out like it should, the idea behind it is fairly sound. Consider the needs of every autistic person and meet those needs, working around any societal expectation that exists because society doesn’t yet accept autistic people as it should.

I don’t know, maybe I’m just rambling, but I’d love other people’s thoughts on this, too.

I’m just sick of the “I have high functioning autism” statements — like, why define it that way?

I know I’ve been guilty of doing so in some ways by identifying the fact that my daughter is nonverbal vs. my son and I, who both have Asperger’s diagnoses.

I know that there’s still a huge stigma against low-functioning autistic people. Those who fall into that category are seen in a way very similar to those who have intellectual disabilities, which in society is a ~~bit~~ lot not good (for both communities).

Eh, don’t mind me…. my brain is just too full of things and I had to write this out.

I’d like to do away with it too. But aside from political reasons (as in obnoxious power relations with nonautistic people), my motives are also very, very personal.

I’m tired of watching people pigeonhole me into one or the other based on whatever thing about me they notice first. If they think I’m HFA then they refuse to believe all the things I can’t do. If they think I’m LFA then they refuse to believe all the things I can do. If they see me as one then they realize a bunch of my skills don’t fit their idea, then they start acting like I’m faking either my abilities or my deficits.

People also expect me to have the same abilities all the time. With the same results when my abilities inevitably shift around.

Besides all that. I have had a group of people in my life that I have a great deal in common with in terms of autism. They span every diagnostic category ever invented to divide us up. This tells me the divisions are bullshit. If the divisions were real, then I could count on being consistently being put in the same category as people I resemble greatly, and in different categories from people I don’t resemble at all. That isn’t happening therefore the categories are bullshit.

Not just for me either. I’ve observed hundreds of autistic people and been able to see who most resembles who else. For the most part that proves the categories bullshit.

This is such an emotional topic for me that it makes my fingers hard to control when I type. It makes me want to shut down and go away and not talk about it. It’s so hard to convince people that their “obvious reality” is just a mirage caused by minds where direct observation is taking a backseat to conceptual thought. That goes for many autistic people too.

The part that makes it the hardest to type this. The people – mostly nonautistic parents, some autistic people. Who say things like. “It’s so obvious that (person x) is nothing like my daughter. Anyone who is honest can tell just by looking that autism needs to be divided up into categories like this.”

No. No It is joy obvious at all. You’re looking at surface characteristics through a bunch of distorting lenses and mirrors.

There are many types of autistic people. The best way to tell which is which, if you’re not equipped to see it directly, is which people find it the easiest to interact with and understand each other. And the types are not always hard and fast boundaries. It’s more like a vast multi-dimensional space with one dimension for each characteristic.

The most important characteristics are not about who looks like each other to the average nonautistic parent, or to anyone else whose brain is that heavily affected by how most people see things. It’s in our perceptual, cognitive, and motor traits lying far below the surface. What looks like a huge difference on the surface can often be just the tiniest difference in underlying traits, or the same underlying traits being expressed in a slightly different way. Two people who look the same on the surface can have virtually nothing in common.

I’m probably better than average at looking beneath the surfaces in things like this. Backed up by the feedback of people I’ve sought out as “like me” and people I’ve introduced to each other as “like each other”. I can’t see these things on purpose but I know when I’ve seen them and I’m pretty accurate when I do.

And I can’t see functioning levels. No seriously. I can’t see them at all. It took me a long time to understand other people do see them. The reason I don’t see them isn’t a deficiency on my part, either. It’s that I don’t have a problem most people have.

I do see people’s abilities quite often though. I see things that stay the same, things that change, things that differ from other things. And I have learned how people see functioning levels. They take a small number of surface traits. Maybe between one and five. And based on the first few they see, they make a really crappy guess about their other abilities. And when they say it’s totally obvious that two people are utterly different, they’re doing the same damn thing all over again.

I’m sick and tired of having to repeat this over and over to people who don’t give a shit. Who have all kinds of motives both known to themselves and not, to keep things exactly how they are. But the damage these ideas do to autistic people is uncountable. Because everything up to our lives can depend on an accurate assessment of our abilities. And functioning levels always get in the way.

That said not all motives for getting rid of functioning levels is great either. The autistic equivalent of “not like my child” is “just like your child”, even in situations where it’s extremely clear in the areas in question that the two people are different, at times when that difference really matters.

That doesn’t mean don’t fight against not like my child, it just means that in certain specific situations – not all by any means – the autistic person is oversimplifying just as much or more than the nonautistic parent is. If I see one more autistic person think that all nonspeaking children will be able to type if you just hand them a keyboard. Or that any given issue will just be solvable magically by whatever worked for that autistic person. It pisses me off. Life isn’t that simple and autism sure ain’t. And some such people want to remove functioning levels not to increase accuracy, but to make us sound more homogenous than we are.

In reality yes there are going to be tons of variations within that multidimensional space that autism represents. And not all of us are able to understand each other. I think that rather than talking about hard and fast categories, it will be centered around each person. Like if you talk about “my type of autism”, you’re talking about everyone a certain distance from me in any direction. Or anyone easy for me to understand or relate to, to a specific degree. Then if we are going to talk about another “type”, it will be centering around another person. Sometimes there will be tons of overlap and other times you’ll find clusters with almost no overlap with other types. But when I think of types of autistic people, that’s how I perceive them. Functioning level has no place in such a way of seeing things. And it makes me doubt that any category system could capture the similarities and differences properly.

So I want to eliminate functioning level and other official categories, because then you can see where the real similarities and differences lie. Rather than pretending that there’s LFA and HFA and AS and so on. And I’m going to disagree with people whose main reason for disliking functioning level is a desire to make us all seem like we are more or less alike. Or who want to do it because it makes it easier to oversimplify things, to pretend that there aren’t all kinds of variations both innately and how we get treated.

(Because while I refuse to say I’m low functioning, or that anyone is. I will say I’m treated as low functioning at this time of my life, and that makes my life different from people treated otherwise.)

So, yeah. Want to get rid of it for tons of reasons, only some of which I wrote about. And not everyone who wants to get rid of it wants to for the same reasons as anyone else wanting to get rid of it. Getting rid of functioning levels means you’re getting rid of a crappy system that keeps your mind from seeing what’s right in front of you. But it requires a lot of thinking and discerning and stuff, rather than imagining a single category means we all get mashed together. It just means that your mind is now free of all the misleading categories, to make judgements of its own. And while distinctions may be fluid and changing and unusual compared to how people think they should work, they still can add up to important differences (in experience of the world, or in how we get treated) to stay aware of.

Oh and a lot of this isn’t in response to you in particular, it’s just in response to stuff I’ve seen some people do. Not even anywhere close to a majority of autistic people, just enough to get on my nerves at times.

Notes: