EDITED TO ADD: Holy crap my memory can be bad. I already responded to this, and yet I then responded to it again not knowing I'd responded to it. Now I feel really stupid. Disregard this if you want.
dyingofpoetry wrote:
I am completely against any individual deciding who is and isn't autistic, unless that person is a doctor and has performed testing. It can be quite hurtful to accuse anyone of pretending. Autistic people are all different, just as all NTs are different. We have different beliefs, attitudes, personalities, etc. Even if people do fake to fit into, say, this online community, I would still welcome them; I'd appreciate their interested and need to feel a part of something.
Are we some elite, private club or a group of individuals who should support one another?
Totally agreed. The focus on finding pretenders does more harm than actual pretenders would do. (Not that I love the idea of people pretending, but having been the focus of a witch-hunt in that vein, considering that I
have to have autism services in order to survive, it's really really cruel to make that accusation of someone.)
I'm even more alarmed that it's about the fact that they act differently in one situation than another. There is an entire subset of autistic people whose abilities shift day to day, minute to minute, second to second, year to year, whatever. This is how we deal with having limited ability to have all of them at one time, we end up having each of them some of the time. One of the most hideous situations possible (and I speak from experience) is being in a situation where one of your abilities you normally are thought to have has shut down entirely, and other people expect you to have it and blame you for not having it, leading you to wish really hard that you could do it, leading to more shutdown because of the intensity of your frustrated trying to do better, leading to more accusations of doing this on purpose, etc. It is
hell. I would never ever put anyone else through that hell just because I didn't
understand what it's like to have a variant of autism where your abilities aren't stable. And if you (the original poster) knew the level of anxiety it can cause a person whose abilities shift all the time, you probably wouldn't be taking this guy as seriously as you seem to be. Because there's little more anxiety-provoking for someone like us, than to know that you will lose an ability, and know that you will be judged for this, and know that there's not a single thing you can do to stop that ability from going away.
Here's a post I used to explain this sort of difference to people:
http://ballastexistenz.autistics.org/?p=496
I'll reproduce the post here so you don't have to follow the link if you don't want to.
Begin quote.
I was just having a conversation about a difference I’ve observed between various autistic people. I want to note, before I describe it, that it’s not some kind of cut and dried division, nor is it scientific. It’s just an observation I’ve made. It’s not even a matter of “types of autism” necessarily, because a person can function in both ways at different times in their life, or bits of both at once. But I notice that some of my friends and family are primarily one way, and some are primarily another.
And be aware that when I’m talking about abilities, below, I’m talking about surface-level stuff. I’m not talking about the deeper neurological/cognitive sorts of abilities, which might be both stable and very much similar in all groups of people described, for all I know.
Basically…
Some people seem to have very stable abilities. If there’s things they can’t do, they just can’t do them. And if there’s things they can do, they always can do them.
Other people seem to experience a lot of change and fluctuation. They might be able to do something one moment and not the next, and they might always have various abilities moving out of the way to make room for whichever one is being used.
And I thought of an analogy to this, or rather elaborated on one of my old ones. Think of elevation as ability in any particular area.
Some people seem to have started off at a certain low elevation in this particular area. Then as they got older, they hiked up the slope. At the top of the slope was a nice, large flat area where they could find a place to live very easily on a long-term basis.
Other people seem to have started off at the same low elevation, but what’s in front of us look more like cliffs. We can get very adept at climbing those cliffs, but when we are, there is nothing else we could possibly be paying attention to, since too much is going to dealing with this cliff face. When we reach the same elevation as the other person, we are hanging onto a cliff face with our hands and feet. There is no possible way we could stay there. We might even be able to reach much higher elevations than the other person — the cliff seems to not have a top, from our perspective — but we will eventually have to either climb down voluntarily, or fall down involuntarily, back to our original level.
Some people might actually find a top to their cliff eventually, and thus be able to remain stably at that ability even if it took a lot more effort and falling down than someone else took to get to that point. Other people won’t find that, and will end up having to deal with cliff faces all the time.
And there is a definite difference, even in two people doing the exact same thing, between one person standing on flat ground at a certain elevation, and another person hanging off a cliff at the same elevation. They might be doing the same thing, and at the same elevation, but they’re getting at it in very different ways, and only one of them will be able to sustain what they are doing for very long. There are all kinds of things this analogy can’t get across — particularly the complexity of having skills shift around all over the place while you’re climbing those cliffs — but I hope that is one of them.
This difference between ways of doing things seems to exist within all so-called “levels of functioning” and other ways of trying to divide autism into little parts. Both sorts of people, and all combinations and variations of those ways that skills can work, seem to exist among people with all ability labels. I do suspect that some of what gets called ‘regression’ is actually just that someone was cliff-climbing and fell back down to the ground, rather than that the person was not autistic until they ‘regressed’.
I’d also like to note that at my own version of ‘ground level’ in many areas, there is a lot of stuff that’s invisible to people way high up in the air from my perspective (including me, on my climbs up here). Not all of it is bad stuff. There are abilities down here that don’t exist so much once you start climbing, and that I rely on as my more reliable abilities, that exist without too much effort or forcing. So climbing high in one area can mean leaving other things behind on the ground. And even people who climb cliffs to get to where most people start out, have actual abilities that do stay the same at some basic level on the ground. They’re just not usually considered to be that. (And people who mostly live up high but happen to walk by a cliff and fall onto lower ground, have a very different experience of this than those of us who live on lower ground but climb up onto the cliffs. Even if both sets of people look identical in some contexts.)
I hope I haven’t by now stretched this metaphor to its breaking point, but I figured it might be useful, and I’ve seen this difference create a lot of confusion between different autistic people before. (And I don’t think it’s limited to autistic people, I’m just talking about autistic people because that’s the conversation I was having that got me into this.)
End quote.
Because of this, I don't have single ability levels in any given area. I have ranges. Sometimes the top can be much higher than the average person and the bottom may be much lower. Such that someone with stable abilities who has, say, crappy writing abilities, could look at my writing right now and say that it's quite competent. And yet, there are times when I not only cannot write at all, but cannot conceive of language as ever having existed, nor conceive of the idea-based thoughts that are behind language. So that person would be mistaken to think that I'm consistently either better or worse at it than them.
Some of the areas where my abilities fluctuate the most noticeably:
Language comprehension. My abilities in that area start out about as low as you can get: No language, no clue language exists, no clue language could exist, no symbols, no categories, no idea-based thought. As high as I can get is... complicated? It simulates normal comprehension, but it involves a great deal of strain, and rather than being as simple as just tying language to ideas, it's more like learning the probabilities that some words go with some concrete situations, learning them as groups of words, and understanding them in that sense. But anyway it can either look normal (or close to it) or be nonexistent. And I grew up using a lot of tricks that I can still use to simulate language comprehension without actually having any, by observing basically everything
but the language. To see a post I wrote detailing every single level (just about) my language comprehension can exist on, click on
What I mean by beneath words.
The effect of language comprehension on all my other abilities, for that matter, is to drop out as many nonverbal-based abilities as possible for the duration of the time I am understanding language. It drains that many resources. When I drop off the language cliff, which happens the moment I stop actively holding on, then those abilities generally come back unless I'm deep into language overload. So shifts in this one ability can also cause shifts in my other abilities.
Sensory-based understanding of the world. This is basically my native mode of understanding the world, and as such I am very good at it. I basically perceive the world as shape/color/tone/timbre/texture/rhythm/movement/etc. rather than as "here is a table and here is a desk and here is a chair". Sensory data instead of categories. Patterns instead of ideas. I work extremely well in this and can use it to simulate abilities that aren't actually there (so to an outside observer, those abilities could seem to disappear the moment there's a gap in my act, rather than the person recognizing they were never there in the first place). At any rate, this ability is nearly always there at a very high level of ability. But it can drop down to a certain degree (and therefore all abilities associated with it do) if I'm trying to process language, or trying to work in the realm of ideas. (To understand more about this, or at least what I hope says more about this, see
Distance Underthought. Sorry to keep throwing you at my blog but most of my writing is there and it's hard to repeat myself.
Idea-based thinking. I can do somewhat good at this in short bursts. But it always falls apart quickly and I go back to that sensory understanding of the world.
Using language. I can do anywhere from long elaborate posts like this, to nothing. Additionally, my language abilities can fluctuate in various ways. So one day I might be typing like this, another day I might be using only abbreviated language with lots of words dropped out, another day I might be using single words with long spaces between them, another day nothing. And there are other directions that fluctuation can take that are more about quality rather than quantity. (And in fact when I write really long things that in itself can be a sign of a language problem whereas on a better language day I might write things more concisely.)
Using social signals with facial expression and body language in typical ways. Normally I am not good at this at all but can use some simple gestures and such. Sometimes though I am even worse at it and don't appear to respond to anyone at all in ways they understand. (An autistic person with configuration similar to mine may understand me even then though.)
"Stimming". As in, rocking and flapping and all that. This has varied a great deal throughout my life. For a lot of my life I could either be stimming constantly or almost entirely motionless but not a lot in between. These days I still stim but not as often because I have a movement disorder that is finally beginning to effect even the only-semi-voluntary movements that are stimming. But I can still range from stimming a lot to barely moving, I just tend far more towards the barely moving side of things these days. But I've been accused of all kinds of things just for stimming sometimes and not others, or stimming in different ways in different situations, it makes no sense to me. It all depends on both the situation I'm in and on how my body is doing that day.
Typing. I mean the physical act, not the language behind it. Normally I touch-type at an extremely high rate of speed. But sometimes, I can only type with one hand, or one finger, or not at all without some degree of prompting to get me started, or not at all period. I can't explain how frustrated I can get when I can't communicate something and someone who normally sees me type very fast growls "Just TYPE it already will you!?" as if I'm withholding that ability on purpose.
Understanding my surroundings in typical terms. By which I mean, knowing what all the objects are categorized as, things like that. Normally I have a fair bit of trouble with this, but can do it with effort. But sometimes the world is just a swirl of sensation and I can do nothing about that. Those times I can actually appear blind and may need to be led places, or appear deaf when someone tries to talk to me and I just hear sounds, etc.
Which leads me to understanding with specific senses. Usually if I'm using one sense, all other senses cut off. I might switch (often involuntary) between senses at any time. So I might seem to be able to see but not to hear, then hear but not see, then feel but not hear or see, etc. And it will take quite a powerful stimulus, if anything, to force me to attend to another sense unless I'm expecting it.
The ability to navigate social niceties. Again, not great at this. But sometimes I do it better than others. And sometimes even when I can communicate in all other ways, I cannot navigate these at all no matter how much I want to.
Level of sensitivity to loud sounds, bright lights, etc. This varies from a fair bit to a whole lot. And again it can be in one sense but not others. Sometimes I actually need to flood myself with sound in order not to be overloaded by a smaller amount of more chaotic sound. It doesn't always make sense but it works. Additionally, even if I am extremely sensitive to a sound, it may be quite hard for me to cover my ears, so I can only do that if I both remember to and am able to, which vary a lot.
Ability to move. This one's complex because there's more than one kind of movement. There's voluntary movement, involuntary movement, several kinds of movement in between the two, and triggered movement. Over time I've had a movement disorder affecting mostly voluntary movement that's progressive. And so I've been clumsy at best with voluntary movement, but could be quite agile with movement triggered by something outside of me, as well as with movement that is not voluntary. (At this point some involuntary movements are affected some of the time.) And anyway, that voluntary/involuntary gap has only widened with time. So if you tell me to get into my wheelchair, I might not be able to. But if you hold a coat hanger above my wheelchair and tell me to grab the coathanger, suddenly I can stand up and from there I can sit in my chair. I use tricks like this to navigate the world. But it does create a seeming inconsistency between graceful and adept movements on the one hand and crappy or nonexistent movements on the other. There's a story of an autistic man with a very severe form of the same movement disorder. He was totally unmoving in a wheelchair for years. Then one day his father fell out of his wheelchair, and that triggered the man to jump up, grab his father, put his father back in his wheelchair, and go back to his own wheelchair. Was he faking all that time? No. That's normal for catatonialike/parkinsonlike movement disorders like the one we both have versions of. Believe me it is hard to explain to people at times when my voluntary movements are affected to the point where I cannot move at all, and yet put a keyboard to trigger typing and I might type quite extensively sometimes, or do something else to trigger a movement and I might do that too, yet be unable to do the simplest movement voluntarily. I range from unable to do voluntary movement at all, to being able to do it, but usually in only simple ways involving the smallest number of body parts possible.
So every single one of these abilities can fluctuate, and every one can affect all the others, and this is only a partial list.
So despite this being a
really really long post (because right now I'm unable to cut down on the flow of words, so this shows some amount of language-exhaustion) the basic idea I'm trying to get across is that this is common, not the most common kind of autistic person, but a common enough feature for autistic people that I find people like me in this regard everywhere. Autistic people with fixed abilities may not understand us, but we are common, and we do not like it when people accuse us of faking just because our abilities are inconsistent, or incomprehensible to others. Really there are too many autistic people willing to sit around and gossip (and that's exactly what's happening here) about whether other people are faking, and too few trying to understand each other with the understanding that we are all different and what makes sense to one person may not to another. The thing about autistic people who fluctuate is that we are very vulnerable to being accused of faking. And that vulnerability can affect our ability to get help when we need it. And that can affect whether we live or die. And that's why I take this kind of thing so seriously and don't think that people should judge others just because they don't understand things like this. Really the entire world is not that interested in being like us that there'd be fakers everywhere. And too often what happens when people meet someone with a nonstandard kind of autism or a kind of autism they just personally are unfamiliar with, is instead of trying to understand the differences, they become suspicious. And that can absolutely ruin the chances of autistic people who aren't the most typical (or stereotypical) kinds, to get help we need, either in support groups or from service agencies or lots of other places. And it makes it so we can't benefit from communities because they are too busy judging us and pushing us out. It's just not right any way you look at it.
_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
25 May 2010, 11:59 am
