One of many forms that aspification takes in the autistic community, is a denial of the existence of autistic people who don’t fit the stereotype. The stereotype varies, but it’s there. This denial can come in many different forms.
One form I have seen is the response I’ve seen to me and to Sue Rubin. The two of us by the way agree on very little related to autism (I think we roughly agree on the communication issue, and the aversives issue, though), her notion that the attitudes of people like us are monolithic is a myth that promotes aspification in itself. Some people have stated outright that they don’t like her or me representing autism because we look too weird. We’re not normal-looking enough.
Plus, we actually talk about difficulties (some of them related to being autistic), that a lot of autistic people don’t want to handle the existence of. It upsets the idea that autism is basically, being a bit socially awkward and geeky.
Now, of course, her opinions do contribute to the aspification thing, from another side, ironically enough. She has stated that high-functioning people (her categorization scheme here) don’t want a cure, and low-functioning people do want a cure. She lists off a bunch of traits that she thinks create this dividing line (by her list, I’m on the same side of it that she is). And in this way she contributes to the idea that anyone who speaks out against the idea of curing autism, is in the category she calls high-functioning. Which in turn further allows the online autistic community — as well as most people in general — to basically assume that anyone who opposes a cure has a certain set of traits until proven otherwise. Aspification all over.
I’m also well-acquainted with the weird little trick pulled in some autistic communities, wherein people like me are trotted out as examples of “the non-speaking auties who agree with us,” but they at the same time totally ignore the realities of our daily lives, because they find this distasteful. They’re ready to say we’re part of their organizations, their values, etc, when it suits them to say so, but not willing to incorporate some aspects of our lives into how they think about autistic people’s fate in the world.
I’m well-acquainted in fact with being one particular community’s token non-speaking autie at times, while the day-to-day realities of lives like mine are barely acknowledged.
There was one conversation in which I discussed the state I ended up in while in an apartment with no assistance. That was, I could not coordinate perception and movement and all that very well, and ended up often sitting in my own pee, barely able to do a part of one thing in one day (with constant auditory prompting for each miniscule body movement), doing a lot of screaming and head-banging, barely moving anywhere, and certainly not cooking or eating or drinking water much, even if the food was very close by. I’d stated this as fact — it’s not a bid for pity, it’s describing my day-to-day life at one point. I had been describing this in conjunction with talking about going to an “autism support group” where I was told that all these things were, in fact, easy, and that I should “just do them”. I had been, in fact, trying to illustrate the disconnect between auties who can do certain things and auties who can’t do them, or can only do them with great difficulty. I want to emphasize, again, that I was not looking for pity, or sympathy, or any of that other crap, I was simply trying to describe how my days went at a certain point, and why I didn’t find certain “support groups” all that useful when those were my practical problems.
In response to these descriptions, one person (I’m not sure whether male or female on any of these, so pardon if I get people’s gender wrong) compared what happened to me, to an attempted suicide, and tried to say that I was in fact deliberately slowly killing myself by “refusing” to eat. He said that if I could type, then I could go through the much more complex process of making myself food. He said that in reality my problem was self-hatred: It is, apparently, self-hatred, to describe what you have trouble doing.
Another person insisted that I simply did not have enough willpower, and that the proper solution would have been apparently to let me starve until I figured out how to cook. (When in reality, it works the other way around: I can only learn if I’m eating enough, neglect is not remotely useful to me.) He said that regardless of how much I was attempting to do this stuff every day, that I was really obviously just giving up on myself and wallowing in self-pity. (So apparently spending my entire waking hours trying to do these things, is giving up. Yeah. Right.)
So I wrote the following response (remember, again, my motivations are to illustrate, not to evoke pity):
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. Wink )
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 retarded” — 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. Wink
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.
This illustrates, though, the total disconnect that exists in this community. There are people who can do all these things, some with lots of effort, some with very little effort, and assume that anyone who cannot do them isn’t trying, is depressed, is self-hating, etc.
Note that I’m not talking about opinions here, again. I’m just talking about lives. Some opinions (including, IMO, some of Sue Rubin’s, such as where she talks about having nearly the worst possible combination of genes) really do stem from self-hatred. But simply having trouble doing something in a certain way is not self-hatred, nor is acknowledging what you have trouble doing.
Some people are so far locked into an idea that autistics are a certain way that they can’t even fathom the existence of the rest of us. So they find ways to write us off. We’re depressed, self-hating, experiencing co-morbid conditions, not really communicating, whatever, they find some way not to see that our way of being autistic is a way of being autistic as well.
People who think that if autistics just don’t hate ourselves, and don’t get depressed, and don’t have any “co-morbid” conditions, we’ll all be just fine, are not really working for the cause of autistic people. They’re creating an aspified autistic community that does both themselves and the rest of us an immense disservice.
Not seriously taking us into account, will undermine their credibility with anyone who actually knows one of the people they want to erase. It will drive away a lot of us who are like me in various ways. I’m stubborn as hell and that’s why I’ve stayed. I know people who’ve left this community for other communities where people at least acknowledged their existence, even if those other communities were into cure or other bad stuff. These are nice people who were not initially into the whole cure mess, but who got driven off by the whole aspification mentality. Then they themselves perpetuate that mentality by saying that the only anti-cure people are the aspified kind, and the destructive cycle goes on and on.
If you talk about not wanting to cure autistic people, but not actually wanting to provide any assistance to autistic people who need it, you’re not getting very far. If you want to just turn us all loose in the world with no extra assistance, a lot of us aren’t going to buy your line of reasoning. If you work so hard to prove how all autistics are “functional” like you (however you’re defining “functional”), and that our only problem is a lack of motivation or willpower, or the existence of other conditions (that are “bad”, unlike yours), you’re not going to win a lot of friends, we’re going to go off elsewhere, we’re (at least most of us) not going to support your movement.
Except for those of us who actually try to break into these places and carve a place for ourselves and those like us. But the fact that we are trying to break into these places that are mostly reserved for others (and this “we” is anyone who’s shunted off to the side by the mainstream of the autistic community, be that disability-wise, economics-wise, education-wise, or anything else) doesn’t mean we are lending our seal of approval to everything that these communities do to people like us.
It doesn’t mean, by the way, that every single one of us who claims this is going on, has a whole picture of what’s going on either — and some contribute to the whole aspification thing themselves — but you’d do well to at least attempt to listen to us. I know people who use the aspification in this community to justify torture and imprisonment for “low functioning” autistics — that’s not right, that’s not okay, not remotely. But don’t pretend aspification doesn’t exist, just because some of the people who mention it and make use of it are really crappy and misguided. Aspification weakens your standpoint, it does not strengthen it in the least bit.
It may be invisible to a lot of you when you use IQ levels as an insult, when you call people retarded or crazy (or any of a number of clinical terms related to same) as a way of dismissing them, when you go “We’re not like that” as if “that” is a bad thing, when you say that all these horrible things are bad for you but good for us. It might be totally fine with you to claim that some kinds of autistics are just plain not good enough for you, that you’re better than us, that you deserve to be seen in the company of people other than people like us. You may not even notice when you say these things day to day, but it’s sure not invisible to those of us on the wrong end of all this.
There are so many different ways of denying the existence of those of us who aren’t as convenient to certain narrow-minded versions of autistic “advocacy”. But as I said, aspification weakens the entire community, and people (including those of us who don’t fit the aspie stereotype all that well, because we can have our own versions of aspification among ourselves) would do well to make serious efforts to avoid it.
One good way to avoid it is to learn about the lives of autistic people that differ significantly from your own, and then not try to erase those people (no matter what kind of people they are) out of existence, and then try to apply your principles to the existence of all of us. No, this doesn’t mean you’ll suddenly want to cure us, that’s not what I mean. But you might get more of an idea of the more complex way a world will need to look in order for things to work out for all of us.
For instance, I may not have a job, but I have made a point of finding out about the various forms employment discrimination take. I wish more people who don’t need a particular form of assistance would still find out about it, rather than attempting to claim that nobody needs it. I wish more people who do need a particular form of assistance would find out about the lives of autistic people who may not need that form of assistance, but might need some totally different form. It’s really hard to take someone seriously as an advocate when they make generalizations that just plain don’t make sense.
It might also be good to take a look at the fact that autistics are only a small group of people within a larger world, and the way that all of us connect to that larger world. Learn about how human rights issues play out for people in general. Learn about the things the disability movements (physical, developmental, psych survivor, and otherwise) have already contended with, and don’t turn your nose up at them just because they’ve often turned up their noses at us. (That constant war of noses turning up against each other is one of the big flaws in identity politics — don’t participate.) Look at the bigger picture and our place in it.
At that point it becomes harder to aspify the world.
Ballastexistenz 
we should be optimistic in our own thought regardless of what
other says.if we dont’t have the will power to consume our effort
on our truth thought we will be missing.
u will be always admired
As with any strict doctrine of thought and/or practice, there are many things that traditional psychology and psychiatry cannot explain. Often times these flaws, in a particular practice, go unseen by the ‘experts’ and the novices are taught to discredit any knowledge that conflicts with the strict teachings…and thus potential knowledge gets lost in someone else’s personal truth. In other words, people are extremely close-minded, generally speaking, when they let one belief system or doctrine govern their powers of thought, reason, conclusion, and logic. The experts, with their myth of objectivity, often tell others that their view is incorrect for a reason that basically amounts to the teachings of some college, book, or other traditional education.
Time and time again, it seems as though the ‘experts’ are the ones that are too educated, in the traditional sense, for their own good. Why is it that even the best of theories, belief systems, or doctrines can really only explain about 90% of the great mysteries? Certainly I have my theories on why, but I have no way of being 100% sure. To this day, I still cannot find a straight-ticket way of thinking that explains all that I, and others, experience. Sometimes I cannot explain some of the things that I experience. Even in moments of absolute certainty, I later reflect and find a reason to doubt my previous conclusion. It’s not to say that I am doubtful of myself, but I do try and develop personal truths that seem very accurate to me…and I hope to find more accuracy after gaining more knowledge and reconsidering such views. I’m not so sure that there are any absolutes in this world, universe, life, or otherwise…although saying that there are none at all would be an absolute view in itself.
I could go on and on about the thought that run throughout my mind throughout every hour of every day, but I’ll instead move into how this might relate to you and I. We live in two seemingly different worlds, at least that is what the experts would tell us. I, being what they would consider ‘normal’, cannot fathom in a truly accurate way what it would be like to be autistic. That is the difference between the experts and me: I don’t try and act like I know everything. Judging from your writing, you are very smart…at least in my view. Traditional I.Q. and intelligence tests might say otherwise, but it is my personal view that each person has their own (sort of) reality and thus each person has their own unique thoughts and thought processes. That is why psychology and psychiatry ultimately fail at explaining a lot of things — the strict rules comprised from past experiences and cases cause the experts in these fields to try and apply what was the case with one person unto someone else. I think that the only difference between a psychiatrist and its patient is that one can help the patient, but the psychiatrist is beyond help. In other words, they are the ones that are so caught up in some pathological world that they cannot possibly fathom a different form of thinking other than their own. These people, in my opinion, are dangerous because they will try to strip people of their individuality through extreme force and next thing we know the patient is worse off than they were before being ‘treated’. It seems as though modern medicine, mental health clinics, and public schools are designed to strip people of their outward expression, their creativity, and their individuality. Judging from your story above, I don’t need to tell you that.
I guess the whole point of this is to say that there are ‘normal’ people who think very different in their own light…but they do so in an introspective manner (typically). It is socialization, from what I can tell, that teaches people to not express themselves in full…and I find myself disagreeing with the practice more and more.
People see you as a physical body with a disability and label you with their ‘suiting’ title of “autistic.” It is almost a form of objectifying a person and letting everyone know that that the person is not ‘in’ with the ‘real world’ which some call society. It is my personal view that seemingly abstract and unique ways of thinking are actually forms of progress for the mind. If one hallucinates then they are labeled as crazy…but if one had, or learned, control over such hallucinations then it could be a very useful tool.
I may not know you personally and I may never know you personally, but I do believe that you have a very great potential within you that many others cannot see…for they rely too much on what their conventional sense and experiences tell them. Perception is how most people gain knowledge, and it is a very subjective experience. It is my personal view that objectivity is a myth. In other words, there are only personal truths rather than absolute truths…at least that is what I have seen so far in my 18 years.
You might disagree with a lot, or all, of what I have said in my long comment (and I do apologize for its length) but I figure that I should at least offer you a long reading about my thoughts since you offered me, and everyone, one about your thoughts.
Many thanks.
Please try to think you are perfect the way you are and unique in your own way too. It is so sad to find out that the nursing and medical personnel really don’t know everything about the human body and the working of the brain. Check out the website of Barbara Brennan who has a school that teaches about the energy field of the human body beyond the teaching of the medical schools or check for the word Reiki and Chakras on the net and you will find a new way to live!!! Good luck and be happy with yourself.
Veronika
y2khealing at yahoo dot com
I work with autistic children, and am so afraid that I may be doing some unintentional emotional damage to them. I hate the structured way we are told by specialist to teach them. I don’t know if they are right. All I know is that I would go crazy if I had to go to school everyday learning and listening to what we make the our kids learn and listen to.
I try my best sometimes to the dislike of my fellow educators to not stick to the the way “Behavior Specialist” feel people with autism should be treated when they act out. Or to tell you what “I feel” a particular action may mean. This is especially difficult when a student acts out in a aggressive manner. It can be very hard, and frustrating at times. This is only because I care so deeply for my students. I don’t want to tell them how to feel or what to feel. Yet I can only guess and hope I am getting it right. I often tell them that “I am not sure what you are feeling. You are angry is my best guess. I’ll give you a moment. If I am wrong please forgive me.” I walk away and leave them to their thoughts. I hate it when others tell us to respond with “your body is telling me you are angry, and that you need to calm down. Go sit in the consequence corner.” Am I wrong? Are they wrong? I don’t know…….
I do care so much though. This post has helped me understand a little more of what a child may be feeling.
Thank you!
What a great video and great information on your web… Keep it up… I have nephews that are autistic and I found this very iformational.. Thanks for the insight into Autism
Amanda,
I was forwarded a link to your video “In My Language” and I have’t been so moved in a long time. I am an advocate for people with disabilities and have a disability myself. I work for Disability Rights Wisconsin and was wondering if there is anyway I could get a DVD or VHS tape of “In My Language” to use in our trainings. I would pay for it of course. Please let me know.
Thank you and keep on keepin on!
Peter
Hi Amanda,
I just found your website because they showed your video at a SCIP-r training I took this week. I am an employee at Autistic Services International. I was wondering what kind of advice you have for those of us trying to assist the autistic individuals in our communities.
Our training was completely focused on using the “Least Restrictive” techniques. And avoiding intervention at all cost. Everything that we learned in our training went in line with everything I have read on your website.
I thought you should know that there are organizations and people out there who are truly focused on “Independence, Individuality, Inclusion, and Productivity”. Which is what every human being deserves.
I will be working in a residence with 4 “high functioning” Autistic Males in their early twenties. Any insight would be fantastic as I am excited to meet these new people in my life.
Sarah:
I don’t know if Amanda intends to respond to you directly. But in the meantime, you might want to start by following some of the links shared by Ballastexistenz readers at http://ballastexistenz.autistics.org/?p=317#comments — it’s a long comment thread and people left a lot of link ideas (some right here at Ballastexistenz, some elsewhere).
A good one to consider is:
http://ballastexistenz.autistics.org/?p=19
A long post that discusses “do-gooderism” with many links to further essays and discussion — put aside an hour or two to pursue all the working links (a few are now broken, but most still work). Key for any person considering entering any so-called “helping profession” or who already works in one, whether or not you necessarily work with autistic people.
But also check out links provided in the comments thread I point you to above.
[…] http://ballastexistenz.autistics.org/?page_id=258 […]
As a developmental therapist/early intervention educator who works extensively with spectrum differences, I deeply honor and respect what you have to say. It takes tremendous courage and beauty of the pen beyond decription. I have only this to add. Until us so-called “neurotypicals” learn the art of humaness and compassion and in the process become more empathically receptive, meeting, understanding and exchanging different ways of seeing/being/feeling the world and in that process lay down the gauntlet of stereotypical demands for wholesale compliance under the embarassing and simplistic banner, for example, of “school readiness” we will continue to perpetuate horrors in the name of “objectivity.” In that deplorable displayed lack of “theory of mind” (empathy – or properly functioning mirror neurons) we will continue to enslave others not only on the BROAD BAND of NEUROTYPICAL differences but ourselves of which we are but an ephemeral glimmer. Neil Samuels
I feel incredibly moved by your courage and the truth in your article. Although I have no direct link to a person living with autism, I feel a kind of kinship, as a trauma survivor; I do not understand the changes in perception and the neurological overload that I seem to experience on a daily basis–and have no real vocabulary to speak about it. No one seems to understand what I am experiencing. I feel drawn to reading and learning more about people with autism, because I feel like I can relate to something about or I can learn something about what is happening for me. I can empathize with the difficulty of living with perceptual difference in a world that is so intolerant of difference and so lacking in understanding. If you know of any resources you can recommend to me I am trying to learn more about differences in interpreting neurological stimuli.
Amanda,
I think you’re amazing and courageous. Thank you for some insight into what having autism means for you. I am a speech language pathologist and all I know is that every person with autism is different just like every person without it. I hope your days of being threatened are over. If I can ever help, don’t hesitate to ask.
Threats happen. And so do people who insist that they know what I am or was thinking or experiencing better than I do. But I’ve actually gotten used to both of those things. The people doing them have unwittingly done me a favor by desensitizing me to this kind of cruelty. Sort of like what Donna Williams said at one point, that I quoted in this post:
In response to be_led_by_reason ‘s comment…
I too deal with diffucult situations like you described… I don’t work at a school but I know someone witth autism pretty well – I help their mom take care of them while shes at work and when their angry I don’t know what to do….. they get very violent towards me(other people) and they break things …. I have had bruises up and down my arms from this and when people ask where i got them…… I don’t know too many other autistic kids like this and I dont know what is going to happen if this conttinues into adulthood for this young one… they are so sweet 99% of the time but that 1% the angry, mad, frustrated part is just plain awful. I wish I had the answers to how to make this particular behavior stop completely……how can an autistic person learn to channell their anger in a different manner cause this is about the only thing that I don’t think is acceptable…….for anyone to do…..
To “Me”: Obviously I don’t know the child you work with so it’s hard for me to conjecture. And I also should hasten to clarify that I’m no expert in autism, nor am I autistic. But just based on my readings: how certain are you that this is anger you’re seeing versus something else that could be misinterpreted as anger? For example, “melt downs” can often be mistaken for anger but have nothing to do with it. What looks like an angry tantrum could sometimes be an instinctive or involuntary reaction to being totally overwhelmed with just too much stimulation to deal with. (Remember that some autistic people are hyperacustic, for example, which means they hear more sharply and clearly than other people–so a noise that you barely even notice can be very aggravating for them. Ditto, for some autistic people, with visual stimulation including light and tactile sensations.)
You may want to click on “meltdowns” under “categories” to explore some of what Amanda has said on that topic. Also try exploring other blogs by autistic bloggers to see what they say on the same topic.
Of course, autistic children do sometimes tantrum just like any other child. But it can be important to try to distinguish which it is. Because if its actually overstimulation, then strategies such as a quiet room with dimmer light, clothes with no itchy tags, etc might help.
I just wanted to say that I think you are a truly amazing, special person. I am going to college to try and become a special needs teacher. I want to change the way things are for special needs children. I don’t think there is anything that any person, can’t do. You are only just at the begining of proving how wrong the worldis with it’s “gray area” & stereotypical viewpoint of what special needs people can or can’t do. Thanks for being you! If you have any advice at all for me I would be grateful.
Amanda, I don’t want to sound trite, but your existence has inspired me. My son Salvador, who just turned 3, has been diagnosed ASD. He does not speak yet. After much research into the autistic condition, I have concluded that NT could also be considered a spectrum disorder; not much orderly about us. I have read various websites with your commentary indicating how you cannot possibly have insight into every autistic person’s mind, but I still have to inquire out of the love for my son.
I never want to be imposing or domineering on my young son, and now I cannot help but think that too much speech, OT and PT can be imposing despite our best intentions. The truth is that we are not connecting with our son completely, and we want to have a consistent two-way communication in order to know we are doing right by him. I just want him to enjoy himself. I accept he is on his own path, and I don’t want to inhibit his growth.
He shows great affection for us, so that is a sign he feels loved and doesn’t have any dissent toward us.
Do you recall your early years and how you first established intentional communication with other humans? As you have stated that you are consistently interacting with your environment, and I am sure there are many subtleties that we must learn from our son, but what would be a strong indicator that his actions are intentional communication and not just a reaction to the stimuli in the environment? Also, how did you learn to read? Was it in a traditional setting?
I know I have asked a lot, so any response would be greatly appreciated.
I learned to read by being hyperlexic, which basically (in my case) means that I learned to decode words early in life but had trouble with receptive language, both written and oral.
I learned how intentional communication worked by going through the motions of language. At first, I didn’t even understand a lot of the sentences I had learned to repeat. As I got older, more and more comprehension and actual communication crept in to both speech and writing, although it was never 100% or even close to it. My experience was a lot like a couple of the other people who read this blog, the ones who talk about speech being seen as a puzzle.
I gradually got to close to 100% communication in my expressive language (although I’m not sure I’ll ever get all the way there with receptive, at least not in any immediate sense), and I actually think that the losses I began to experience in speech again after awhile (with, for instance, cutting out rarely when I was 12, often enough to be in accommodations letters by age 15, and pretty much constantly by some point in my early twenties) were possibly my brain making more room for the sort of comprehension that is necessary for fuller communication. When I spoke, I found it very hard to understand just about anything, because speech took up so many resources and was so painful and taxing on both physical and cognitive levels. Speech obscured my thoughts and personality more than it revealed them.
Basically, a whole lot of things I went through the motions of for ages before anything sank in, which could be quite confusing to people on the outside watching.
These experiences are mine, though, and I’d recommend reading Please don’t take me as typical as well as a lot of other stuff here. You’ll get a lot more details on the particulars by reading through my blog.
And I might be very much unlike your son. I feel very uncomfortable when giving advice about people I’ve never met, because while some things are probably common to all autistic people, our expression of those things is so varied that we can even appear opposite in many areas (like me and my brother, both autistic, almost polar opposite in some areas).
Also, if you want, I can point you at books and other writing by autistic people. If you tell me a topic you’re interested in reading about, I’ll see about recommending books, and I’m sure other people here would be happy to as well. This is because describing autism, while it happens on my site, isn’t always the main focus, but many autistic people have dedicated entire books and websites to that topic. I know most of the books because I’ve been collecting them in an attempt to catalog them (although I’ve been missing out on most of the recent ones). And if you give a topic, I can probably find some autistic person who’s discussed it in depth. And of course you can read through my blog, because I write about a lot of these things in more depth, and many of my readers are autistic or otherwise neurologically unusual and we all go back and forth about our experiences on here a lot.
One big difference can be, for instance, a lot of autistic people are almost the opposite of how I developed, with trouble with both expressive and receptive language, but in their case there’s more trouble with expressive than receptive. I’ve got more with receptive than expressive, which is common in hyperlexic autistic people, but not all of us are hyperlexic. Another difference is what Donna Williams describes as the difference between “taming dysfunctional language” and just having language develop more slowly. I had the “dysfunctional language” problem more than just the slowness problem when it came to expressive language, and even in writing there’s some serious language-wrestling to do because of that at times. But many autistic people develop language in a typical order, just slower than usual.
Working with Severely Handicapped students at the state school has been an enormous adventure for me. I have developed rapport with many just because I have approached their spirit rather than their mind or body. Amanda, you have a lovely, brave spirit. Thank you for speaking out.
I’ve just stumbled across you and I was so blindsided by your video about your language I was compelled to come here and comment on your blog. I have a child, a daughter, two years old and “normal.” She displays no indications of any cognitive or developmental disability (i.e., I am not writing you for advice). I was bowled over by what you are communicating because life as a small child is quite the same as being under the types of control that you describe. Her feelings are just as valid as mine, and yet sometimes I treat her as though she were a doll – denying her, telling her No, just picking her up and putting her elsewhere if she is somewhere I don’t want her to be, making her put her toys in a certain area of the house and not allowing her into other areas of the house.
Granted, it is my job as her mother to keep her safe until such time as she learns how to keep herself safe. But why are we, as parents, so conditioned to say No, to arbitrarily impose limits, to not allow what we don’t “feel like” allowing, out of some feeling of inconvenience to us?
Your video reminded me (I say reminded because this is something I’ve been working on already, to respect my daughter’s autonomy and her desire to put nonfood items in her mouth to taste them, to roll in puddles to feel the texture of mud, to bang things against metal to get the satisfaction of a clanging sound, or a vibration, or to do whatever else she wants to do in order to get a whole-person sense of her world) . . . your video reminded me to step back, to allow my daughter to learn and to interact with the world how she wants to, not by some arbitrary set of rules I follow because I was raised by people who followed them because their parents raised them to follow them.
What we do as “traditional” parents raising “traditional” children is to squelch every ounce of discovery and creativity out of them in favor of the dubious goal of interacting with society in a “normal” and “acceptable” way. Why can’t our children taste a pen? Why can’t they rub their face in a book until they really, really know what a book feels like on their face?
So I suppose I’m really just writing to say you inspired me to redouble my efforts to be a parent who makes it possible for her daughter to meaningfully interact with the world, in every way possible.
I had not come across the terms ‘expressive language’ and ‘receptive language’ until I read them on this blog, and in other writings by autistic people. I didn’t see those terms when I studied for a degree in linguistics in the early 1990s.
Having looked in the indexes of several books on language and linguistics, the only definitions of expressive and receptive language I found are: 1) Expressive language as any use of language which shows or affect’s a person’s emotions. It is also called emotive language. 2) The expressive power of language: its ability to convey meaning. 3) As describing a specific language impairment (SLI). Aphasia is commonly classified into expressive and receptive types. Expressive aphasia is also called Broca’s Aphasia. An Encyclopedia Dictionary of Language and Linguistics defines it as “characterized by effortful speech, with problems of word finding and disruption to the grammatical system.” A feature of Landau-Kleffner syndrome is impairment in expressive and receptive language. But otherwise than used in 1) and 2) above, I have not seen the terms expressive language and receptive language used outside SLI.
Besides the communicative and comprehension functions of language, there are its artistic and aesthetic aspects. Such as the beat and rhythm of poetry; listening to words, not for understanding, but for the beauty of their sound whether spoken, chanted or sung; the shape of letters in different alphabets; artistic arrangement of words on a page; calligraphy.
My receptive language is better than my expressive language.
Philip: It’s not surprising that there isn’t much information about the distinction between expressive and receptive language other than in a context of impairment, because people “normally” learn both together. Most people would have trouble even imagining having one without the other.
Young children before they speak have a very large receptive language and their expressive spoken language starts growing as they mature…Dogs and most other pets of course do not have the physical ability to speak our language but can have very large receptive languages..Both very young children and pets without the ability to speak are still able to communicate with body language…We just have to be willing to listen and learn what they mean.
I enjoyed reading Phillip’s reference to the artistic and asthetic aspects of language..We have
a family member and a new friend who have a way of
pulling archaic words off dusty shelves and flinging them headlong into everyday conversation..It is such a treat to hear these words once again. Some people too have such melodious voices I don’t think it would matter too much what they read…It would be a delight to listen…Tolkien’s readings affect me like this..
Yes, when I use the terms expressive and receptive language, I mean something like this:
Expressive language: Language used in speech, writing, sign, etc. (The language we use, rather than the language we take in.)
Receptive language: Language comprehension of speech or writing.
As far as sheer quantity and type of words go, I have always (when able to speak/type at all) been able to use far more of them than I could comprehend, and I can remember in fact using words without knowing that words had meaning at all, let alone what the words were.
As far as the ability to take my thoughts and form words by them, I have had more trouble with that. That’s always been hit-or-miss at best and non-existent at worst, and it’s changed a lot over time. Adulthood is the only time it’s really solidified into mostly being things I meant, other times have been various percentages in different directions.
In The Lord of the Rings there are poems, songs and other passages in Quenya and Sindarin and other languages of Middle-Earth. They can be enjoyed without knowing their meaning. But, of course, the works from which Tolkien took LOTR were written in Westron, or the common language of Middle-Earth, which was remarkably similar to English.
Musical notation is a form of language. Expressive language in music is the ability to play a musical instrument or to sing. Receptive language is the ability to read music. There have been musicians, such as Jimi Hendrix, who couldn’t read music. I can read Western musical notation but can’t play a musical instrument. Between the ages of 12 and 14 I had piano lessons and could play a few simple piano compositions. My mother was a talented piano player.
Westron wasn’t actually similar to English, he just translated it. To preserve the similarity, he translated Rohirrim (very related to Westron) into Old English.
Of course Westron could not have been any type of English, because the events recorded in LOTR took place thousands of years before Old English existed.
Hi,
discovered you on the website “the Last psychiatrist”describing the unexpressible as you do is an encouragement for me to keep journalling and to stay in the battle.My diagnosis-paranoid schizophrenia.I discovered you,hows that for luck!
best,
bev
Hi-
I’m sure that you must have people commenting like this all the time, but I just wanted to let you know how amazing I think your writing and videos are. I got really interested in so-called ‘radical disability theory’ sort of recently (through trans feminisms, writings on intersex, gender, bodies and embodiment etc.- (I’m just graduating college, my senior project was about transgender and transsexual embodiments). Your work is some of the most compelling and inspiring stuff I’ve encountered, and it definitely makes me want to devote a lot more of my time to thinking about ability (whether ‘academically’ or otherwise..). Anyway, Thanks- looking forward to reading more of your entries.
-Jean-Luc
ps. I totally bought a copy of A Wrinkle and Time the other day to reread- It was great to see that you quoted from that.
[…] offers another description that’s eerily close to what I’ve experienced in her “Why It’s So Hard to Write Directly About My Life”. Her writings have made me feel less crazy overall, seeing someone else who’s gone through […]
A brave and inspiring piece, radical and eloquent. Thank you.
Bright blessings
Thank you so much. Your writing and courage is more beautiful and hope-inspiring than anything I’ve ever read. I hope I can help get your message out there too if I get into health/social research. The truth will set us free.
Thank you :) You made me cry and i wish i could, more often, get from me the very same courage it took you to write this
Love
Thank you so much for sharing and for being brave. I am very glad you wrote it. Though I have never been institutionalized nor am I autistic, I did have an abusive home so I can empathize with many of the things you wrote, even though my situation was so different from yours. Thank you for writting all that you wrote. May you be blessed with all good things.
I need to thank you for writing this. I thought I was the only one with the voices that said, “this didn’t happen to you, because things like that don’t happen” — Even when, obviously, those things had happened, and I had witnesses to them. I don’t have any bold and encouraging statements for you, but thanks for reaching out and letting me know it’s not just me.
This post is stunning. It made me cry. Thank you so much for sharing the undeserved pain of your life with the world. I think people will understand autism a lot better as voices like yours become public.
I want to thank you so much for writing this. I am too austistic and have struggled with this most of my life. Trying to process information, not being able to move my eyes or make appropriate eye contact at the right time. Feeling things at times people can’t explain. Sensory being so off I feel like I’m in pieces. I get scared to look at people because I fee they will see me staring at them and I can’t tell what facial expressions I’m showing to the outside world without looking in a mirror and memorizing that situation with the way I looked then. It’s like living your life in a dream
To continue where I left off. I can totally relate to you on how frustrating it is to be this high functioning with Autism and you are not alone. Were just alone in our own worlds and other people can’t really see it. So many people can tell you look so normal and that you understand it like everyone else but you don’t. You see it from a whole different perspective and feel things differently. It’s not that your seeing things or crazy its the angle in which you see it from a whole different end and like being a sleep when your a wake because of reprocessing old information as your trying to move on. You know when your asleep because you don’t worry when your dreaming and when your awake you worry about every little thing and feeling and what it means. I don’t know if you tried different therapies like supplementation,exercise or some other speech therapies. I know that the supplements that I am on are helping to declutter some of the past information and to process things more clearly but what is so frustrating is that its hard for people from the outside to notice much changes and I sometimes look like I’m getting worse but I know I’m getting better when I can focus on less things and relax with it. I really feel this is what people with severe autism who cant speak are going through and can’t communicate about it.
You just have to keep on fighting on not give up.
[…] In both cases, they are telling you what you should feel, and insisting that you put on a performance to their specifications, on demand. They feel entitled to decide what your reality is, and substitute their own version. They have no right to do that, even when it’s ostensibly for your | own good. […]
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