Idiots amongst people with A.S. (esp. in support groups)

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First of all, my intentions have been misconstrued, so I'll try to explain. I didn't write what I wrote for anyone's pity, not even my own. (I have to be pretty ruthless about self-pity, it's a waste of energy and gets stomped out pretty much the moment I notice it most of the time. I don't have energy to waste. And pity from other people doesn't solve anything either and is fairly uncomfortable.) What I did write it for, was because these situations can become life or death, and because some people don't understand that. Life and death are more important than my feelings, and more important than the feelings of someone who for some reason feels belittled by my descriptions.

I am sorry I lost my temper though in trying to explain this, I'll explain why later further down towards the bottom.

The truth of sink or swim is that some people after a long struggle swim, and that can be great for those people. The trouble, is that some of them then assume that everyone should be dropped in the water, and that those who drown -- maybe those with just a tiny bit less arm strength -- brought it upon themselves. People who drown don't need pity (their own or anyone else's), or even emotional support of any kind, they need not to drown. (Whether that entails water wings, more gradual swimming lessons, a shallower pool, or in the case of people with aquagenic urticaria -- a potentially life-threatening allergic-like reaction to water -- not to get in the water in the first place.)

I worked long time to learn to type as well as I do, and to learn to communicate as well as I do. I, at my best, type somewhere in the vicinity of 130 words a minute. For some autistic people they will struggle equal amounts, maybe even far more than I will ever have to work in the entire time I type anything, in order to type three letters a minute. Some of them have probably worked longer than I've been alive, and harder than I've ever worked at the same task, to be able to do something a lot slower than I can do it. I don't find this belittling to either me or them, or a sign of lack of determination in them.

Some things I try very hard and never come close to. Some things I try very hard and fall just short of. Some things I try very hard and excel at. Some things I excel at almost without trying. Which things these are, is going to be different than which things they are for some other people. This doesn't bother me, that a person's skill range in any given area is going to be different than another person's. I don't mind the things I am worse at, or the things I am better at, or think it belittles anyone involved.

I am saying this, because there's a misunderstanding often when I say these things. About my motivations in saying them, and about my feelings about these things. I don't feel the usual emotions people have around issues of ability, disability, whatever. I find that sometimes people project either their imaginations of me or their own emotions onto what I talk about, and assume, like my descriptions of parts of my life, that I'm talking about joyless misery and tragedy and things like that, and that's not really the view I have.

I do take life and death stuff very seriously though, not only for myself (not even primarily for myself, at this point, because I'm not having to fight certain battles at the moment) but for other people out there for whom the price of the kind of misunderstanding in this thread is far higher, and yes on a life and death level, than it is for me right now.

So in the interests of education -- and please take it as that -- I'm going to explain why a person capable of logical thinking, and not even necessarily in any particular emotional distress, who has quite a large store of willpower, may still not be able to get to food when it's in front of them and they're starving. This is real stuff, it's not exaggerated, what I've experienced is not even the most extreme version of what I'm going to talk about. I know autistic people who can't volitionally reach up and scratch their noses, ever, and I usually can.

I don't need your sympathy from this, but someone else may well need your understanding -- not your warm fuzzy emotional understanding, but your understanding that they're in danger and may not be as lucky as I was. So, please take this as educational information, if you really want to know.

At any rate, it goes something like this (this is going to be oversimplified, I don't have all night):

Most people look at their surroundings and they see things a particular way. Like, a person with a different brain looking through my eyes would see, a computer monitor, sitting on a desk, with words on it, that they would proceed to read at least a few of without thinking much about it, etc.

Most people don't even have to think to know where their body is. It's just a given, and when they want to do something, they can pretty much get up and do it. If they cannot get up and do it, it's because they don't feel like it, or are afraid to, or other emotional reasons. If they do move in a particular direction, or do a particular thing, it's mostly because they decided they wanted to and then did it, except that's so automatic that they don't even notice they're doing it.

And, in feeling their body, most people can identify sensations like hunger, thirst, the need to use the toilet, etc, and of course since everything else works more (or less, but not so much less it becomes impossible) standardly, they'll be able to do all that.

Most people also can hold thoughts in their head while doing all these things without the thoughts disappearing or getting jumbled.

Some people have some amount of difficulty with one or more of these things, but not so much that a serious amount of effort -- sometimes over a long period of time -- will not eventually let them do at least the basics in life.

I don't have the most amount of difficulty possible with these things, but I tend to have more difficulty with these things than most people in the support groups I was discussing do. (Although I have more ability at these kinds of things than the worst of my records claim that I do.)

So...

Before I put forth much effort, I don't see much of anything. If I put forth some effort, I see shapes and colors and patterns, but I don't see "monitor" and "words" and stuff. More effort, and I resolve the existence of such things, and even more effort, and I can read the words and stuff as something other than "gee, there's words there".

And similar levels of basicness go with all the rest of these things, including formulating particular ideas about the world and what needs to be done in it.

But it gets more interesting. Most people can get a little weird if they don't eat, drink, or sleep enough for a bit. If I don't eat, drink, or sleep enough for a bit, then the amount of effort it takes to do any of these things ("these things" being throwing together the building blocks of perception, reflexive thought, and action) increases greatly. So then I'm putting more effort out for less return, which makes me less able to do the eating, drinking, and sleeping stuff, which in turn makes my effort worth even less in terms of action. It's like watching economic inflation happen within the course of three days or less, only instead of the value of the dollar dropping, it's the value of some unit of effort.

This, of course, happens to even totally non-disabled people, too, but it happens much more slowly. In my case it's helped along not only by the fact that I'm autistic but by the fact that lacking regular meals/water/sleep/etc are my main seizure and migraine triggers.

Now, the seizures were complex-partial seizures. That means that among other things I can carry out a purposeful-looking activity during a seizure, but I won't remember it afterwards, and the activity will have something seriously screwy with it. It's some kind of automatic movement, so it can be, my body will just walk up and open a door and walk back in the house and sit down, and then I'll regain consciousness, but I'll be more confused than usual and pretty much fall asleep no matter how awake I was previously. Or sometimes it's just sitting there staring.

So that's another part of many days we're talking about there, that were being eaten up by seizures and subsequent sleep. (And if the seizures got out of control there were at times about ten minutes worth of them, or so I'm told by people who were there. And after something like that I needed serious reorienting, on the order of another half hour of repetition by someone else, just to remember my own name.)

And those are triggered in me mostly by lack of adequate food or lack of adequate sleep. (They're also well-controlled by seizure meds at this point, but at the time I also didn't have adequate healthcare.)

Then there was just the standard stuff.

Yeah, technically food was just across the room. But in order to even conceptualize the need to go across the room to get it, there's a lot of things you have to know.

You have to be able to understand that something you can't see (because it's in a cupboard or refrigerator, or even just behind you) is still there. That's at times an enormous leap of abstraction for me. (I eventually left packages of rice cakes and peanut butter lying around the house in strategic locations.)

You have to be able to identify the food, whatever it is, now that it's lying around, as food.

You have to understand what the purpose of food is.

You have to understand the sensation of hunger as more than just an uncomfortable but totally inexplicable sensation, and you also have to be able to feel the sensation of hunger. (At that point I had untreated severe neuropathic pain, so my entire body felt like it was burning all the time. Hunger doesn't always show up against that particularly well. I had no idea I was in pain, I thought this was just another inexplicable sensation that had always been there.)

You have to, in fact, connect the sensation of hunger to the need for food, and connect the concept of food to the stuff that's in the house that you may not at that point be able to see (or identify, if you do see it).

And that's all just to conceptualize the need to go over and grab the food, and this doesn't get into how you ended up with the food in your house to begin with, or understood what food you needed to get, and it's assuming a food that doesn't require any cooking (which I didn't always have on hand -- my biggest supply of food was a giant tub of rice and a giant tub of lentils).

Now you've decided you're going to grab the food. Then what?

You have to notice that you're attached to a body that will be able to grab it for you.

You have to know which parts of that body are going to do the grabbing.

You have to figure out how to send a signal from your brain to these parts. And you can only really move one at a time. By one, that's, like, one. (Or else you can rely on automatic movements, but that's a different matter.)

So you're ground control in your brain sending message to spaceship finger. Only, a lot of the time, there's going to be static in the air or other interference, and before you know what's going on, your finger either won't move, or will move the other way.

Or else, you have to start from a bit of you that's already moving automatically, and then work your way down to the bit that you need to move. So, if your finger is twitching, you latch onto that. You work your way, literally inch by inch, up your arm and other parts of your body.

But now you've got this shoulder, and that's what you're trying to move, that you've got sort of banging up and down but you can't get it to go side to side.

So you start working on side to side and the up and down part stops working.

And then, if you ever get the whole arm going where you want it to go, you have to calculate a bunch of stuff about where exactly you need to put the arm in order to push down so that you can stand up.

And then you push up, and instead of just standing, you end up running around the house in circles on autopilot, and literally bashing into walls in the process. (This is an automatic movement -- you started it with a voluntary movement but then the autopilot movements got control.)

At which point you forget exactly what you were trying to do to begin with, so you run around for awhile being confused and getting out of breath and such.

You realize somewhere along the line that you're hungry, and that entire first set of things I described plays out all over again, only at this point you're running around the house because that's what your body is doing on autopilot while you're thinking.

You realize the first thing you're going to need to do is stop.

It takes awhile for the signal to get to your body, but when it gets there, it really gets there. You're now kind of stuck in one position.

So now it's back to moving one bit of your body, then another, then another. And when I call this an inch by inch process, and a gradual one, this is again no exaggeration.

You do this in various bits and pieces, and you're kind of alternating between not moving much at all, and starting a voluntary movement only to have it transform itself into a repetitive and involuntary movement, or else a strung-together bunch of automatic movements that you attempt to ride closer and closer to your destination.

Meanwhile, all the focus on moving your body both drives out all your other thoughts (including what you were doing to begin with) and any focus on the sensation of hunger that would otherwise make returning to those thoughts a more rapid thing (provided the sensation could be deciphered).

This can continue for hours.

Any time a seizure happens, you can lose a few more hours in some combination of disorientation and sleep.

You start ending up with other problems, too. Like, after you are hungry enough, the world starts looking even more distorted, and occasionally seems to tilt sideways on you, and you fall over. And then you have to figure out how to get yourself off the floor, once you figure out that you fell over and figure out what a floor is and all that kind of thing. At which point, again, you're going to be forgetting you're hungry, and again, whole initial process repeats.

There are almost no photos of me during this time period (because I was very isolated), but people who've seen them say I looked anorexic. Except, I wasn't anorexic, I was just capable of getting lost from one end of a room to another and of forgetting about what hunger was and stuff like that. I had no shortage of hunger, or even willpower, but in order to act on all that willpower, you have to have a place to aim it, and you have to be able to remember what you're trying to do. I could remember exactly what I was trying to do, as long as I didn't move or start thinking about anything else.

And there was that whole jumble of understanding what's going on, and then understanding what to do about it, and then understanding what to do about it with the specifics of body movement, and then prodding my body into that kind of movement, that got very disorienting after awhile, and did often end up with prolonged shutdown and seizures and so forth.

And the less food you have, the less energy your brain has to think with. And since most of my problems were thinking problems (or more specifically "thinking of all these things at once problems", is a shorthand way of putting it), this just meant things got worse and worse, until I was at the point of serious perceptual distortion and physical collapse and so forth. (These things will happen even to a non-disabled person who is malnourished enough, it's just easier to bring about in someone who's already having trouble with some kinds of thinking.) (Oh, and also, I had two enormous bins of dried food that needed cooking, that were my main food items, so most food was more complicated than the rice cake scenario.)

So, what often happened, was I had a choice. I could spend all day doing this sort of thing, to get some food to eat.

Or I could spend all day doing this sort of thing, to get some water.

Or I could spend all day doing this sort of thing, to use the bathroom.

In the real world, it was of course a blend of the three, changing a lot of the time, and leaving none of them done entirely properly. Focusing on eating meant I didn't have that energy to focus on toilet stuff or water stuff. And same with focusing on any of those things.

And in the real world there were even more factors than what I have described. My mind encounters walking across a visual barrier almost as if it's trying to walk through a wall, it's very difficult and uses more effort up. The more cluttered and chaotic my place became, the harder it was to move around.

I did in fact crawl around a good deal (especially when I couldn't stand without falling over), but even crawling takes a good deal of effort. And walking was an automatic movement, so sometimes I would get interrupted in a standing-up movement to go run around the room until I could throw the brakes on. (Sometimes the only way to throw on the brakes was to fall over and then crawl, actually.)

This was not a particularly healthy way to live, but I lived that way for quite some time, during which it just got more and more difficult because I had less and less food and such. I had kind of barely enough to live on and not enough to sustain a brain very well.

So put the support group into that scenario, and it entailed attempting (badly) to explain what was going on, not being understood and/or fully believed, and hearing advice that was -- yes, sometimes well-intentioned, but often just as incredulous and confused as some of the people here, and even when it was well-intentioned, it was not particularly practical or was already being implemented.

It was a couple hours drive each way, and an hour of being around overloading people giving advice that was (whether meant to be or not) not very practical, and also of a very support-group mentality which seems to mean not a lot of practical support but loads of words of emotional support (I wasn't looking for emotional validation -- then or now, I might add -- I was mostly looking for food and ways to reliably get food).

So that meant five hours of overload and unfamiliar surroundings, and a few hours recovery time, in a day when it could take me upwards of six hours to get a few bites of food, and none of the advice I was being given there was useful enough to take all that time out for it. And there wasn't a lot of food there. Or ways to get food. (Did I mention, food. )

So it just wasn't worth it. Pure cost-benefit analysis. It's sort of like someone who works long shifts every day of the week (to be able to barely afford rent and food in the cheapest ways they can find), and who barely has enough time left over to eat and sleep, being expected to go to a support group about their situation. Even if the support group were totally excellent -- and few are that amazingly excellent -- they could lose their job, and their home, and their food, if they kept going. There are people in the world who honestly are unaware that some people's work situation looks like that, but the work situation remains the same whether others notice it or not.

I was dealing with a situation where my equivalent to that "work situation" was working nonstop (while aware enough to do so) at getting things so that I could get the bare minimum of survival needs done, and they might not have even sustained me much longer than they did.

For what it's worth, I'm in a much better situation now, and I'm capable of what seems like a lot more:

I can go to the refrigerator most of the time when I try to.

I can go to the bathroom much of the time when I try to, and in the right location.

I can often use a microwave to warm up a meal, and then eat it.

I'm still working on the water.

I can do all of these in the same day most of the time, and I can even have a fair amount of energy left over for writing.

There are a few reasons for this.

One is that I live in an apartment where the floors are almost totally uniform. I do not have to cross lines anymore to get where I am going, and my body no longer has to push as if pushing through walls.

Another is that my neuropathic pain, seizures, and gastritis, and tons of other things, are more or less successfully treated, and so are the recurrent urinary tract infections I used to have when in that pretty bad living situation, and the cold urticaria is totally gone. (These were treated as a result of both later gaining access to better medical care, and also the fact that I figured out much more both about communication and about how to feel certain things in my body than I knew at the time.)

Another is that in the course of all that medical stuff, I finally (and very easily, it turned out) got prescribed a wheelchair for the motor problems I had. This means that I only have to move a few portions of my body in order to get anywhere, instead of having to coordinate them all at once and balance at the same time. It also means that the visual barriers are less of an issue even when they are there.

And, I have an apartment that is accessible to wheelchairs now, so I can move around it. (I used to have a wheelchair but still couldn't get around my apartment in it so it was kind of useless indoors.)

And I have a significant amount of help doing the basics, which frees me up to do other things as well, and means that I don't run into the vicious cycle of only being able to do bits of one thing, which means losing nutrients, which in turn means being able to do less, which means losing even more nutrients, etc. (Trust me, there's only so much a brain can run on limited nutrition.)

This all means that I am a lot more active now, and a lot more capable of a lot more things, although not infinitely so. It should be noted that the amazing gains in my ability include being able to open the refrigerator, microwave things, and use the toilet. Complex cooking skills are still pretty far out of reach.

And if you take away even one or two of the things I mentioned that have changed, then it goes back almost exactly how it was before. I truly do work to maximum sustainable capacity though, it just looks like less because it accomplishes less outwardly.

I hope that explains things, and I certainly am not trying to belittle someone else by this, any more than I am belittled by people who assure me that they are working as hard as they know how to type a few letters a minute and still can't dress themselves. But to them, as to me, this becomes a life and death matter when it is not taken seriously. That is why I have gone to quite a lot of trouble to explain it in detail to people who have been confused by it. If I have gotten somewhat short-tempered, it's because I care about people whose lives depend on people understanding that intelligence does not mean ability to grab food when they need it, and two of my best friends in the world have nearly died over misunderstandings like this, one of whom is still in many ways at risk of all this.

Although I do wonder if people here had really been at that conference I was at recently would have answered a lot of people's questions. I look and move (by most people's stereotypes) like someone who would not be expected to read or write one word, let alone this, let alone cook, etc. (Even when I was trying my hardest to pass, and thinking myself successful, I was surprised when people referred to me as looking "low functioning" or "severely mentally ret*d" -- their words, not mine.) My appearance tends to startle people who've read my writing almost as much as my writing startles people who've only looked at my appearance.

In all seriousness, I probably look like that because of how little of my body I can move voluntarily at once (as well as the things my body does involuntarily), and that lack of volitional movement (as well as thought, perception, etc, which are all tied together) is why I have had so much trouble doing things like getting food. The only reason I startle people is probably because they oddly associate that level of perceptual/motor weirdness with lack of thinking (even the degree of laziness mistakenly ascribed to me on this thread can't cause the kind of appearance I have, so my appearance is too unusual for lack of effort) -- all the thinking and effort and so forth doesn't make the perceptual/motor weirdness go away.

I am highly pragmatic too (someone said they were too pragmatic to end up in a situation like this, which I assume means they have a more obedient body as well), which is why I found much of the discussion perplexing: Ignoring the fact that my body works like this would be one of the least pragmatic things to do in this situation, and I learned that one through trial and error.

What I dont understand is that you've already explained to us that you've improved your capabilities (and its not simply because of better nutricion and such) and yet you dont think you can improve any further?

That just doesnt jive.

I don't think I ever said that I can't improve any further, just that I do hit actual limits and that at any given time I might not be able to do something. I said that maybe 30 years down the road, sure, I could learn certain things -- possibly, it's not guaranteed.

If you took me right now and set me back in the apartment I was in at the time, though, and with the exact same kind and level of supports as I had then, you would not see much difference. My "improvement" as you call it, isn't wholly caused by nutrition and stuff, but without adequate nutrition, environmental modifications, seizure meds, etc, most of the skills I've gained are not going to be accessible to me because I'm going to go right back to square one when it comes to perceiving the world and moving my body and so forth. I may have those new skills in the back of my mind ready to come out when I have the mental capacity to use them, but very few of them are going to show up while I am in that particular kind of survival situation, because I'm not going to have that kind of capacity.

It's sort of like, if you take a person who's got no arms or legs, and you give them a wheelchair, a wheelchair-accessible home, a Hoyer lift, mouth controls on everything, personal assistance services, etc, they're going to look very very skilled. And they're going to be able to probably learn a bunch more skills, and do all the everyday things people do throughout life.

If you take away the wheelchair, put them in a wheelchair-inaccessible apartment, take away the mouthsticks and the environmental controls and stuff, and they're going to be in roughly the same position I would be in the equivalent situation. They might be able to, with a lot of effort, wriggle over to some kinds of food and do something about it, but they're not going to be able to reach the sink to get water, get in and out of bed or onto the toilet, etc. And they're going to be totally focused on that, and nothing else, and most skills they do have are not going to be all that useful in a position where they have no means of using them.

I'm not much different than that, it's just a cognitive rather than a physical thing. Take away all the surrounding circumstances that allow me both to gain new skills and display skills I already had, and I'm not going to be able to do a lot of things that I can do right now, including any skills I've gained. There were a number of skills that I had gained previously that had become almost totally dormant in the survival situation I found myself in, and of course came back as soon as I had survival needs adequately taken care of.

There was a situation in which, to give one example, I was able to almost totally use the toilet without ever going anywhere else. People who believe in certain kinds of skill development at all costs might think this to be wonderful, but it meant that there was actually very little else that I was doing. The moment I am doing something else, that skill goes partially away. The moment I am responsible for trying to use several skills at once in ways that are totally impossible for me, all of it goes completely away.

I read a book once by an autistic woman (of the sort who struggles to type a few letters a minute, if you're wondering) who was constantly praised for the "improvement" she'd had in her behavior when someone changed her school. But the problem, she said, was that people expected that this was something she had done, and that would carry over to all environments. In reality, the new school was just an environment that made it easier to behave. The old school had been too overloading and patronizing for her.

Many of my "gained skills" are like that -- they are only there in certain environments, and circumstances, and if you change the circumstances, they're gone. I may work hard for them -- in fact I work hard all the time -- but hard work is not all there is to any of this, for anyone. The supports I need in order to be able to do my best are far more unusual than the supports a non-disabled person needs, but if you took away the supports a non-disabled person has (and all of them have supports, that are often invisible to them until they go away) they would start looking pretty non-functional.

But most of what you're doing, it seems, in response to my posts, is coming up with the worst interpretations of my character that you can put on them (I'm not entirely sure why, it might not be intentional), and also the most simplistic views of my life as you can. This all started with me saying that the advice I got at a support group was pretty useless given what my actual abilities were. Somehow you read far more into that statement than was ever there, and assumed me to be some kind of defeatist who gave up before I started (if that was true I would have not lived on my own for years with inadequate support and inadequate nutrition etc). When I tried to explain why that was not the case, you accused me of self-pity and wanting pity and belittling you. When I tried to explain what my actual motivations and abilities were, you're now claiming I'm contradictory just because I haven't managed to tell you every detail of my life story. I'm not totally sure what you want out of this conversation, but one thing I really am right now is sleep-deprived.

Maybe it would be better for you if you just actually assumed that I am telling the truth and that I am not trying to be insulting, not having any ulterior motivies or defeatism or hiding things from myself etc., and that any apparent contradiction you see is due to my not being able to write every nuance and detail of my life and worldview. These would all be true assumptions.

I'm sure if you spoke to someone who knew me, they'd verify all the information I've given. Just because you don't totally understand it doesn't mean it's not true. Read the book "Autism and the Myth of the Person Alone" (edited by Doug Biklen) and you will see a lot of people who have similar skill patterns to me (sometimes better at a few things than I am, sometimes not as good at a few things as I am) and then after reading that maybe you will understand better what I'm talking about when I say that yes I've improved in several ways (by both your sort of standards and mine) but I haven't acquired such massive capacities as to be capable of the things you've assumed I'm capable of. And those are facts without value judgements on them.

Im not assuming that since (as an example) you can juggle and ride a unicycle you can juggle while riding that unicycle.

Im just saying that if your situation has improved to the point where you have the time and energy to dedicate to learning to do without the support why arent you?

A couple things.

One: Because, for reasons already explained, that's simply not how it works.

Two: Because "learning to do without the support" is not my main goal in life, any more than most non-disabled people's main goal in life is learning to be a hermit survivalist and live off the land totally on their own (although some choose to do so), or most people with no arms or legs's goal in life is to regrow their limbs (and to in the process ignore all other parts of personal development).

There are lots and lots of skills I want to learn, that are well within my grasp with a lot of effort. I focus on those skills, and on the everyday sorts of personal development that most people focus on. I'm shaped a little differently (cognitively), but it all adds up to the same thing -- everyone has things they work very hard on, and things that by necessity they do not or cannot work on. There are important things I can do in the world, I know roughly where my place in the world is at the moment, and I know what I need to do before I can even think about the sort of skills you're talking about (and I'm nowhere near there yet). I also know that putting huge amounts of effort into it, given my learning style, will actually hinder anything that may (or may not) happen in that area. Either way I will know I've done my best at what I really need to do, and what really matters.

Dave Hingsburger once wrote about how in developmental disability fields, a ton of energy is wasted on teaching adults who find learning to do things very difficult, skills that will not improve their quality of life at all. He said, if you find learning difficult, focus on what's important to learn in life. That is what I do, I find learning skills very difficult and I focus on the ones that matter. I don't need to give an exact accounting to you of what those are, because I know which ones matter. Rest assured that I, like most people, work hard on what I know matters in life, and have my priorities pretty well straight (facing death over and over makes those priorities very clear).

I read an article last night that talked about stories that people tell themselves about disability. It said, "Frank asserts that we tell three types of illness narratives. 'Chaos' narratives are characterised by a plot which imagines life never getting better. 'Quest' narratives, by contrast, meet illness head on, accepting it as the beginning of a journey and seeking to use it. Finally, 'restitution' narratives are defined by a plot which, in essence, tells the hearer: 'yesterday I was healthy, today I'm sick, but tomorrow I'll be healthy again.'"

It is possible that you are assuming that because I'm not telling myself your version of a a 'restitution' narrative, then I must be doing a 'chaos' narrative. If so, rest assured this is not the case -- my life is my life, and I don't tend to tell myself a lot of stories about it. I have no particular need to tell myself stories about it, certainly not any of those three. I live my life -- and live it well -- and don't really need to tell stories about it except when I have to do clumsy translations of it into words (and yes they're clumsy and people can then read the common stories into it that are not there, except for the everyday story of a person living their life). But my life is not a story, it's, well, life, and I'm certainly not telling myself any of those particular stories, when I'm off living my life, which I'm certain I'm quite on the right track in. If that makes any sense.

I think the best thing about an online support group like this one is anonymity. You get a wide variety of feedback, but aren't obligated to take anyone's advice. Or justify your decision to not take their advice. Or have anything further to do with people who pressure you to change in ways you're not ready or motivated to.

Well if your happy I guess thats all fine and well.

I just find it hard to believe anyone can be happy having to rely on others to survive.. knowing that if they decided not to come in to work or whatever I may very well die would stress me out to no end.

But then again by necessity Ive always been very self-reliant and wouldnt trade the confidence and peace of mind it gives me for anything.

But to each their own I guess.. still aggrivates me for some reason I dunno but thats my problem not yours.

I probably just see too much of myself and my struggles in you or something and it brings back the anger I used to have for the pity and doubt others would have for me.

I'm actually not all that anonymous (although my gender seems to have been misread in this particular instance), but another good thing is being able to grab people in real life, show them what's on the screen, and have them go "Uh, that doesn't even sound like you or make sense in terms of your life. At all. Why do you read this stuff?"

I guess I've learned that other people's pity and doubt is their problem, not mine. I don't create that pity and doubt by being who I am, they create it in their heads because they have stereotypes of people who look and function the way I do.

I don't actually think there's a self-reliant person on the planet, although survivalist hermit types come the closest. (But even then, all but those who were dumped in the woods as children and managed to survive -- and those are rare -- have relied on other humans to some extent in learning what they know, either directly or indirectly.)

I have a friend who tried to believe she was self-reliant, got really good at believing it, ended up homeless and almost died of starvation because she kept on trying to believe it. In the end she realized she wasn't, right around the same time that she realized there was peace of mind in other circumstances. (And in fact I think peace of mind can be found in all circumstances if you know where to look.)

It's not a physical possibility to turn me into a non-disabled person, so I've also had to find peace of mind elsewhere -- in places other than the survivalist hermit fantasies of my childhood or the I-can-do-hard-work-and-make-it-on-my-own-no-matter-what fantasies of adolescence. I've certainly figured out -- just plain factually -- that humans are by and large an interdependent species and that the only thing that makes the support I get stand out is that it's not planned for in this particular society. (In some others, including the ones some of my relatives grew up in, it was planned for, so with the exact same skills as mine some relatives were considered "independent" whereas I am considered "dependent," just because of the way support was structured. Which is why I know independence is kind of a myth in most cases.)

But, yeah, I think if my being who I am pisses people off, in this respect it's probably their own problem, or their own imaginings about why I am who I am right now.

Yeah thats me.. though Im not the type who actually likes living out in the wilderness Ive simply taught myself the skills necessary that if I were ever put in an emergency situation where civilization wasnt available I wouldnt have to sit around and mewl like a lost lamb like most people.

But more to the point I can walk on my own and live on my own and considering where I started from and what little help I had along the way I think your "baby dropped in the woods and surviving" example pretty much describes how it went.

I had no support or anyone to help only people in denial and never around basically just hoping I would die and they would be rid of me.

Maybe Im one of those rare cases like a person paralyzed from the waist down not giving up and gradually painstakingly regaining full use of their legs or something maybe not I dont know all I know is that I overcame the same problems your dealing with without the benefit of outside help (perhaps thats how I was able to.. I didnt have a choice either that or die or maybe it was fueled by anger who knows).. all Im saying is you shouldnt give up easily if being more "high functioning" is something your interested in because its not impossible.. improbable maybe but not impossible.

Last edited by Fraya on 20 Sep 2006, 2:41 pm, edited 1 time in total.

When I went to my group,everyone there was nice.BUT we had 3 kids that were EXTRMELY loud and annoying.But then again these kids were ages 11-13 and most had problems other than AS.That's still no exuse though.



-SpaceCase

When it comes to gross motor actions, my body runs mostly on autopilot. I'm not a person, so much as I'm a ghost in a biological machine which does the best it can at fulfilling the ghost's will. That probably has something to do with my gross-motor coordination issues.

For me, it's like this. Suppose I'm in the bedroom, and I am thirsty. I think about wanting the pop in the kitchen, and my body just automatically gets up to go get it. I don't think about my weight shifting from foot to foot, my arms swinging, putting one foot in front of the other, or any of that stuff... my body just does it.

If I did not, I think the most primitive parts of the brain would eventually override everything before I died of thirst and move the body to the location of drink, unscrew the cap, and chug the bottle, whether I willed it or no. It is very attached to its existence... probably because it somehow "knows" that when I leave it for the last time, it's going to rot.

Given that you know the English language, it's clear you've had exposure to the work of other people, and, even if not directly or not noticing it, benefited from other people a good deal, even if you did not learn from them in the traditional fashion. The children I am talking about don't develop language even if they do survive, because they're flat-out not exposed to people past early childhood. They don't use an economic system maintained by other people, they don't work at jobs that require other people in order for them to work, they don't live in places built by other people, pay other people for things like food and Internet access or get Internet access on their own... you and everyone else who uses English and the Internet and holds a job, is clearly roughly (a little more or a little less, of course) as dependent on other people as most people are, which is actually a huge amount. It's just not considered dependence in this particular society -- but it's as much dependence as anything else.

Nobody living in a society can claim full or even most of the credit for their life no matter how long they've had to "go it alone" -- that "alone" just means without a few particular supports, anyone who's considered a functional member of society is constantly benefiting from the support of others whether they think about it or not. That doesn't mean that people don't have to work hard, but hard work is always only part of the story.

Similarly, when someone's got a spinal cord injury, whether or not they recover leg function has very little to do with how hard they work. (Anyone who's been through rehab can tell you that.) It has to do with the degree and kind of injury they have. Contrary to popular belief, there are many kinds and levels of spinal cord injury that can make someone paraplegic, and many paraplegics can move their legs -- not because they're special or worked harder than the others, but because of the exact nature of the way and place that the cord was hurt. Have a different sort of injury, and no matter how hard you work you'll never walk, period.

But it's interesting that you'd use that as an analogy. You and I did not start with the exact same set of abilities, or after being dumped into the world with no help I'd be in the same place as you by now. There's nothing wrong with this -- but it seems like you want to claim more credit than you can for what you've done. In reality, no matter who you are, or what you've done, you can only claim partial credit. You have to start with a certain level of abilities (even if they're dormant) to do what you've done.

Other people die trying to do what you've done, and not for lack of trying. You may have come close, but you survived. I survived things that others did not, and it's not because I'm a stronger person or worked harder or that they just gave up, that would be an incredibly arrogant presumption on my part. We all worked hard, some of us made it and some of us didn't. Sometimes one of us had an innate ability that others didn't. Sometimes one of us had some accident of birth -- the right background, the right appearance, the right skin color -- that gave us even a slight advantage at a crucial point. Sometimes one of us was in the right place at the right time, and somebody else was in the wrong place at the wrong time. Hard work, sure, is crucial to a lot of things, but it's not the whole story. Anyone who thinks it's the whole story has a lot of learning about the world to do. Good people, strong people, hard-working people, die, all the time, for reasons beyond their control. Our control goes only so far.

I know that, while keeping a total iron grip on that control, and while working really hard to the point where you're always near the breaking point, it's really tempting to claim credit for everything and assume those who did not accomplish as much were simply not trying as hard or not forced to try as hard as you were. But it's not true. If hard work were all it took, believe me, I would be employed by now and all that. If I had avoided the help of others, I would be dead by now -- and I know several of the things that would have (just purely physiologically) done it over the years, they're not things that bend to the human will.

And I know that you want to claim credit for a lot of things, and certainly you're part of the credit, but even the most determined person in the world only has partial credit for anything in their life. I know you might come back at me with details, but I am intimately familiar with the mythology you're telling yourself (or at least this board), and I know that people who subscribe to that kind of mythology, and who persist in the "I did it all on my own" myth (and it's not limited to disabled people, I've heard people who went from poor to rich who tell themselves the same story and are always quite oblivious), always have narrow views of what support constitutes, and what help constitutes. An orphan dumped on the streets in the middle of civilization is still benefiting significantly from everyone in that civilization. Anyone who has a job is dependent on others for more things than I could even list.

I could tell -- and could make a case for, in the eyes of the oblivious-to-some-supports -- a similar story. I could talk of making it against the odds when all that was predicted for my future was permanent institutionalization and my functioning level was literally written down as zero, of going it on my own for a long time just to escape an awful system, of proving everyone wrong, of being a very strong-willed person who needed nobody's help, and so forth. But that kind of story is always -- always -- spin-doctored, even if not consciously. I am sure there are people in the world who would eat that story up, it's a very popular story. Even the fact that you are telling the particular story you told, with the analogies you have given, says how much you rely on others, because it's a very particular and popular way of constructing stories about certain kinds of people's lives. A person independent of society would not have the cultural background to create that particular story. I'm not saying you're deliberately doing this, but to tell or believe that particular way of thinking about the world shows a strong dependence on a very particular and popular cultural myth.

I also know -- and checked it out with people who've known me a long time, who read this conversation -- that you and I did not start out with the exact same set of abilities. We might have started out with similar experiences, but the fact that you stopped having those experiences and I did not, and the particular things you've lacked understanding of in this thread until explained, and the sort of timespan you gave for your "improvement", says everything about a gap between us. It may be a miniscule gap or a large gap, but it's a gap, and it's not a gap of willpower, and not a gap of one of us being forced to do more by circumstance. (I know too many who, thrown into the same circumstances as either of us, flat-out didn't survive. And I know the exact manner that I have gone to my limits, which by definition shows the most willpower a person can show.)

I hope that the day you find yourself on the other side of that gap in an important situation, you remember all this. I don't necessarily expect you to believe me, but these are facts about the world that nearly everyone slams into at some point or another. Adversity can build character, when it doesn't destroy you, certainly, but the areas of character which it has built in me (which are quite valuable in my place in life) are clearly different from the areas that it built in you.

And the child dropped in the woods didnt go it alone either he learned from watching the animals what is good to eat and what isnt and relied on them being slower than him in order for him to catch and eat them and learned from them where good places to sleep are etc etc.

Believe its all a matter of luck and your just unlucky if it makes you feel better but Im done Im tired of being insulted and lectured by someone and being treated like an evil person for not being impressed with someone for not accomplishing anything.

Its just the way it is.. this isnt elementary school you dont get partial credit for failure.

support groups? no way. i went to groups before and there's no privacy at all wich is why i don't go to them, i supose if everyone there is inflicted with the same thing it would make sence but the ones i went to were absolutley horrible

I don't believe it's all luck, and I didn't say you were evil -- you're yet again reading things into what I wrote, that I did not say. I've been talking to you in good faith, and you've been basically from the beginning projecting all sorts of unpleasantly onto me that's just not there.

This isn't school at all -- life isn't a game where you get "full credit" or "partial credit" or "no credit," or where you pass or fail. I certainly don't need your stamp of approval or your versions of help to get through life, but I think eventually you'll get into a situation where you see some of this from my point of view. May not be now, but most people notice this stuff someday.

And it's not all luck, I didn't even reduce things to luck. I said that trying hard is only one part of what happens to you in the world. Not no part. If a person doesn't try, they don't get anywhere, even if their circumstances are amazingly perfect. But the world is a place with many interacting things going on all the time. It's egocentric for a person to believe that they -- who are only one of those factors -- can control every other factor. Even if they can exert large amounts of influence on some of these factors, other things are beyond their control. Part of life is eventually figuring out that there's some things you can control and some things that are outside your control. It's not a detraction from one person's virtue to admit that they depend on others for some things.

I'll provide an illustration: I'm alive in part because a single person was walking past a certain place at a certain time. I was dying -- would have died in minutes, and this was as the result of an attempted murder -- and this person saved my life. Am I supposed to claim total credit for my survival when I owe this person my life? I certainly fought the people who were attacking me, but I was smaller than they were, and there were more of them than me. They immobilized me and laughed at me for fighting them. And I could fight with the sort of strength that got people wondering if I was on PCP or not -- still no match for seven people. My survival may have partly been due to my delaying the attack by fighting them, so that particular person would walk by right as I was dying and not afterwards. But it was also partly due to the person who walked by. I cannot claim full credit for surviving that, nor can I say that the people that were killed by the same people were weaker of will than I was. That would be false, and it would dishonor their memory.

It's interesting you say I think you're evil. I don't. I just don't think you're superior and I don't think your amazing level of willpower is the only reason you are where you are -- it's one reason, but it's not the only one. This is not something I only apply to you, my successes are not totally my own either, they are partially but there are always other factors.

I also don't think I'm a failure, because I'm not. I do what I'm supposed to do in the world, I work to and past my limits all the time like most people do, and I have a valuable role in society. It may not be a popular role, and it may in fact involve being scorned and treated like a failure, but I know what I'm supposed to be doing and I do it. I succeed at some things and fail at others -- like everyone. A society doesn't work if all its members are doing the same thing, and I have a particular effect on society (along with many others like me) that is just as valuable as the work you do. This isn't just words, it's observations.

You may be "higher functioning" than me in some areas, but I have honed other skills that you haven't. That's life. It doesn't make one of us better than the other. Nobody hones the exact same set of skills -- not everyone even can -- and if we did, we wouldn't have a society. A machine falls apart if you make it entirely out of the same piece, over and over. A society falls apart if everyone has identical skills, because humans are by nature limited and finite creatures and cannot all do everything necessary for a society to run. They have to learn different things and depend on each other to pick up what they themselves don't or cannot.

I will probably never get paid for the skills I have honed during the period where you might view me as having learned pretty much nothing, but there are skills I have honed that don't even have names, that are as vital for the running of a society as the work you do. It would be wrong, in fact, to pay a person for what I do. I will probably not get a lot of credit for it. That's fine, too. But it's still there, whether noticed or unnoticed, loved or hated or indifferent, successful or failing by constantly-shifting standards, my place in society is still right there and I know where it is at any given time.

But I don't say any of this to insult you.