4:20am December 5, 2011

➸ everything's your choice, sid.: rantsquotesandtruth: everything’s your choice, sid.:...

rantsquotesandtruth:

everything’s your choice, sid.: rantsquotesandtruth: everything’s your choice, sid.:…

rantsquotesandtruth:

everything’s your choice, sid.: rantsquotesandtruth: everything’s your choice, sid.: Excerpt from the…

wakeup—-sid:

rantsquotesandtruth:

Sorry I don’t know who said what, really confusing, I’m replying to the person who said that they know autistic people who can control their behavior, therefore autistic people can control our behavior in general.

I find this insistence that autistic people can control our behavior really strange. And that is pretty close to the only thing in this conversation I’m interested in talking about. So here goes:

The real answer is that some autistic people can control their behavior. And the degree to which such people can control our behavior ranges from almost nothing to virtually everything. It also varies which of our behavior we can control, and in what ways. The consequences of controlling our behavior are a whole topic in itself.

There’s a saying that’s become really cliche, but it’s true: When you’ve met one autistic person, you’ve met one autistic person. Our abilities and limitations vary wildly. Not just from the cliche-but-inaccurate scale of low functioning to high functioning. Any of us can have just about any combination of abilities and limitations, although some combinations are more common than others.

This is much like cerebral palsy. Some can walk and others can’t. Some have additional learning disabilities and others don’t. Some have athetoid and some have spastic. There are many dimensions they can vary on just as autistic people can. It’s just as inaccurate to say that you know lots of people with CP who can walk and talk, therefore people with CP can all walk and talk. It’s the same with autism: Some people can control behavior and some can’t, we are not all one way on this.

What happens when I run into my limitations is much more… I guess stark is the word… than a lot of autistic people I’ve met. I have virtually no wiggle room.

By stark I mean any combination of the following can happen:

- I become unable to move at all.
- I go into a state where I am unable to control movement at all, but lots of automatic so-called “stimming” movements happen without my intent or permission.
- My senses blank out entirely.
- Idea-based thought blanks out entirely and at best the only thing resembling thought is the bare processing of sensory information.
- At worst all thought as most people understand it blanks out and I’m left with something I can’t even describe.
- I just “disappear” – I don’t know what else to call it, when it happens I either have no experience at all, or such minimal experience I can’t even explain it.

My entire life and the way I function revolves around preventing most of these experiences, which can often take ages to recover from. These things are like hitting a wall. Sometimes it’s possible to control which one will happen. But it’s impossible to control the fact that at least one will happen, once certain events occur.

There’s this idea floating around that autism = behavior, or else that autistic behavior serves no purpose and can be eliminated with no harm done to the autistic person. But research seems to be showing that autistic behavior is simply an outgrowth of differences in motor control/movement, sensory/perceptual differences, and differences in cognition(*).

You’re also wrong that Tourette’s tics are uncontrollable and autistic “stims” aren’t. Both have a wide variety of severity, and autistic people’s “stims” have a very wide variety of reasons. A person with mild Tourette’s will find it easier to hold in tics in public than I find it to hold in “stims”. (It used to be easier for me. Extremely long story. I have a condition that means many sensory and motor aspects of autism have amplified over the years instead of “improving”.) Lots of autistic people have written eloquently about exactly how hard they have to fight stimming just to be able to type, let alone actually get rid of the stimming. Stimming and tics are different, but the difference isn’t necessarily about how voluntary they are, it’s more of a qualitative thing. (Stimming and stimming are different, too, because it’s a word that covers a wide variety of actions that happen for a wide variety of reasons.)

I’ve literally been in situations, stimming-wise, where I was physically ill, and my body was rocking so hard that I was becoming nauseated and vomiting, and my body hurt all over, and I still couldn’t stop rocking. I suspect things like this are also behind some of my repetitive strain injuries and widespread joint pain. I also used to (prior to a shift in physical abilities that prevented it from happening as often) literally run around the house bodyslamming walls, jumping on and off the furniture, making weird noises in my throat, and flinging my hands and arms all over the place, until I got completely out of breath, had asthma attacks, and still couldn’t stop until I finally fell down from exhaustion (if I couldn’t get someone to help me lie down and get under a weighted blanket). Not that stimming is automatically bad, but if I could have prevented these things in these situations by preventing stimming I would have. The thing with running around until one collapses can actually be quite dangerous, but that doesn’t make autistic people with that problem able to control it more than a minimal amount.

Also controlling stims can result in self injury. I’ve heard that from lots of parents of autistic kids who wish they’d never taught their kids to avoid stimming in public (or at all) – because their kids are now so overstimulated that they slam their heads into walls instead. Autistic people often have similar stories.

For me, even trying unsuccessfully to suppress stimming results in one or more of the “hitting a wall” events (a.k.a. shutdown) very quickly. This is partly because the unusual ways my body sometimes moves, seem to be actually attempts by my body to assist in understanding and regulating sensory input. Even attempting to remove it will result in sensory floodgates opening, and at that point severe shutdown is unavoidable.

So for me, everything I do involves trying to balance between the different kinds of shutdown well enough to function. Functioning here is nothing close to how nonautistic people function, it’s just about getting through the day with the right amount of food and water and stuff, and possibly also communication. I get a lot of help and it’s still hard work. I’m not complaining, it is what it is, I’m just explaining its a lot different than people might expect from my writing at good moments.

(There’s actual research suggesting our adaptive skills aren’t correlated with intellect. But for me even my intellect at one moment isn’t correlated with another. I can go from writing like this to inability to differentiate light and dark on a cognitive level, in no time at all.)

And the interesting thing with trying to function throughout the day is that in order to do my very absolute best, I can’t spare any energy at all trying to look like a nonautistic person. Every scrap of energy has to go into regulating movement, perception, and thinking.

That means my hands will often flutter around without asking me. My face will often not register to a nonautistic person that I’m even aware they exist. I will often have to drop language comprehension entirely, relying on tone and context except when absolutely necessary. I will often need a lot of time “recharging” by sliding into a state where idea-based thought is minimized if not nonexistent (if I don’t do it voluntarily it will happen by force). I will often have to have an object ready to focus on if I go anywhere unfamiliar.

But that means I will be able to react by eating when handed food, react by drinking when handed water, react by swallowing when handed my medications, hopefully avoid urine or bowel incontinence, and avoid too much freezing up when carrying out these activities. I generally do need the physical prompting by being handed the object, but if I am trying to focus on looking normal, I’ll divert so much energy that I’d either need to be fed by hand or skip the meal. Even with all this help, and all my strategies honed over the years, and all the work I put into these things, I still do things like dehydrate bad enough to end up in the emergency room by not getting enough food and water.

A funny thing about controlling behavior too: I used to bash my head into things over and over really hard, and sometimes scream as well. This usually happened during those times when skills were shutting down and I was trying hard to keep them from doing do. I did a lot – a LOT – of work to try and control it. I had minimal success. But now I barely ever do those things.

Is this because I’ve suddenly learned control? No. It’s because the progression of my movement disorder currently prevents certain kinds of movement from happening, at least not easily. I’d love to take credit but I could only take a little, the rest is my body doing what it does. That in itself tells me there are definite involuntary factors making some people’s behavior more controlled than others – things we didn’t choose.

So for me, even if I wanted to pass for normal (I used to want to) survival really has to come first. (And I am always, always functioning at the top of my capacity. That’s just the kind of person I am.) Lots of autistic people are nothing like me in this regard. But lots are, too. There’s plenty of autistic people who can more or less control their behavior. There’s plenty who can’t.

Also, even if I were to control the stimming entirely, I’d still look very abnormal to most people. Looking autistic isn’t just about what we do that others do not do, it’s also about what we don’t do that others do. When not stimming, I still look different enough at this point in my life for people to call me “retarded” or “low functioning” (not terms I like, but people say them) based just on my appearance. I’m told it’s the way my body holds itself, the way I move only the bare minimum body parts to do something unless just the right motion is triggered, the default “blank” way my face looks in between relatively fleeting facial expressions, the way I seem to stare “through” things, lack of standard eye movement for the situation, and a huge amount of other stuff. These things vary by situation but I’m always lacking typical body movements and/or doing atypical ones.

For a person who can only do one thing at a time, and who naturally looks and moves like I currently do, it’s too complicated to try to change every atypical behavior or lack of typical behavior at once. And that’s even if I had the energy, which I’ve already explained in a lot of ways, it just isn’t there to spare when there’s more important things going on. Besides that, there are sensory reasons that I can’t connect to my body in the right ways to cause it to move in ways that look “normal”, and many times I can’t feel it well enough to know if it’s moving in abnormal ways or not moving in normal ways anyway.

And even for people with lots of adaptive skills and who look much more normal than me, with plenty of energy to spare, and much fewer walls to hit if any… there are still important tradeoffs:

- Do I want to look a person in the eye, or do I want to understand what they are saying?
- Do I want to stim, or do I want to be unable to concentrate on what’s happening around me?
- Do I want to use the normal facial expressions, or do I want to be able to think up what to say to someone?
- Do I want to speak (and/or speak spontaneously), or do I want to communicate?
- Do I want to allow this person to touch me, or do I want to be pain free the rest of the day? (Note: Pain is not just a subjective problem. Sufficient pain levels impair all kinds of systems in the body from the immune system to wound healing. And autistic people can often get severe physical pain from light touch, or any touch at all. Which is suspiciously similar to what happens with damage to various aspects of the sensory nervous system.)

So, to attempt to summarize (I usually suck at summarizing if you can’t tell by my way too rambling writing style):

The fact that some autistic people can control something doesn’t mean we all can. (If that kind of reasoning were right, we’d all be able to talk, too, just because most of us can by adulthood.)

The fact that some autistic people can control something doesn’t mean we all should try to do that or even that they should. We have to prioritize what’s important: Form or function. Looking normal for its own sake is form. Being able to do what’s important for survival, interaction, etc. is function. Often opting for form actively prevents function from taking place. This is why many of us greatly prefer function.

There are many of us (and it’s impossible to tell from writing skill online which we are) where it’s actually dangerous for us to try to look normal. Not only can’t we do it well. But we also crash both hard and fast and completely lose skills most people can’t even imagine not having.

Also I didn’t mention this before. But there’s some people where it seems really obvious that each time we shut down that hard, we permanently (or at least long term) lose some skills. That may be the answer to why I’ve lost so much over the years. It may even be the reason some autistic people (me included) “regress” after we’ve learned a certain number of words in infancy. A lot of autistic people who (like me) are extremely shutdown prone, have described crashing more and more over the years. This can eventually lead to job loss among people previously employed, late speech loss among people who could speak part of the time, loss of basic daily living skills, etc. These things can be catastrophic and even life threatening if they have no support system in place.

So even besides the consideration that people ought to be able to act strange without people pressuring them to do otherwise… there are a lot of really good solid reasons for this not to be a main priority in an autistic person’s life. And some people being able to do it with minimal damage to the rest of their lives, doesn’t mean this is true of all of us. It’s so not true of me it’s not even funny.

So that’s all, aside from my side note/footnote about a different topic. Sorry about the length, I am really bad that way.

(*) BEGIN LENGTHY SIDE NOTE

These differences cause both advantages and disadvantages. (I keep up with the research and have been actively sought out by researchers for collaboration due to my skills in this area. My strengths mostly center on being aware of a very wide variety of direct experience among autistic people, and my ability to see things about us and in the research even if it directly contradicts received wisdom about autism.)

Autistic advantages tend to be things deeply embedded in cognition and perception. They are not so much “being good at history” – they are more likely to be things like decreased susceptibility to certain cognitive biases, increased visual search abilities, independence between thought and perception when the situation calls for it, less susceptibility to false memories, better visual discrimination, etc. Some of these strengths are things that nonautistic people just don’t have, others have overlap. These more “basic” strengths then contribute to things more commonly seen as abilities, such as my ability to see patterns in research that contradict what I’ve been told to expect.

There’s also a theory called Enhanced Perceptual Functioning (see the work of Mottron’s group in Montreal) that actually suggests that our weaknesses exist due to our strengths rather than the other way round. (And that instead of a single core deficit we have a single core strength that all our many and varied patterns of strengths and deficits come from.) I don’t know if they’re right or not but it’s fascinating stuff.

At any rate autistic strengths are more than just something like “we are good at computers”. And even many of the heavily deficit-oriented researchers are forced to acknowledge this. (Others will engage in bizarre attempts to make results showing strengths into something they can explain by deficits even when none of their research points to those deficits. Morton Gernsbacher, former president of the American Psychological Society/Association for Psychological Science, has written a good deal about these biased in research. She also, interestingly enough, once told me that schizophrenia has some cognitive advantages too. At least I think it was her, if it wasn’t it was definitely another researcher.)

I do want to say however that the existence of strengths doesn’t mean we have no deficits. If we didn’t have deficits that nonautistic people don’t tend to have, I would (physical issues aside) be employed, able to speak, able to take care of myself and my household without extensive supports throughout the day, able to have good voluntary control over my body, and a whole lot of other things. But there are definitely things autistic people tend to be good at that nonautistic people aren’t, despite our many disadvantages. Not that this makes us better than anyone, it just… exists.

END LENGTHY SIDE NOTE

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