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mcewen said in November 29th, 2006 at 17:04

Probably best not to get into the conundrum of PDD[NOS] I wonder what percentage they consist of?
BEst wishes

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ballastexistenz said in November 29th, 2006 at 17:56

This has nothing to do with diagnoses and everything to do with stereotyping. Whether someone is “PDD-NOS” or not according to a set of diagnostic criteria isn’t as much a conundrum, as much as totally irrelevant to this.

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anon. said in November 29th, 2006 at 19:10

At some point you need a wider audience. The new incarnation of the CBS Evening News, now with Katie Couric, has an almost daily segment of something entitled “Free Speech” that’s an A/V version of Newsweek magazine’s “My Turn.” Explanations like this might set education forward by orders of magnitutde. Speak just like in your videos.

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Yarrow^Amorpha said in November 29th, 2006 at 22:19

The “if she REALLY wants to do it, she’ll LEARN if she’s given no help and forced to do it all herself” was used on us repeatedly with regards to school, and… didn’t help much. Like, they thought the first time we flunked an assignment and didn’t have anything done by the due date, we’d “learn from the consequences of our actions,” etc, etc, and everything would be okay from there. Except that it, uh, wasn’t, and every assignment started turning into a repeat of that initial one. (Then they start in with the “well, you must really have *wanted* to fail…”)

We haven’t had it so much with the food and so forth, but the general, basic, ideas as described are familiar to us: seeing shapes in the fridge but ones that don’t connect in our brain to the concept of “food,” or register for us as something which can be cooked and turned into something edible; or for some of us, not recognizing that uncomfortable sensation in stomach means get up and put food in it.

We had a pretty lengthy conversation about this today with someone else. The high-functioning aspie stereotype of socially awkward computer geeks and absent-minded professors seems to be invoked by a lot of people talking about why autistic people going to university is good. But *only* those who fit the stereotype. Everyone who doesn’t fit it is therefore conveniently erased, dumped into the category of those assumed to be too “low-functioning” to be there in the first place. And, well, you know, there are Places For Those People, they’re not our problem.

Part of the reason the stereotype of “we’re all super intelligent and don’t need any help and don’t look that different from you” grates on us is our background of being labeled “gifted.” The stereotypes there are pretty much analagous– you’re assumed to be socially awkward, naturally proficient in every academic area but especially science and computers, act like a “little professor,” etc, etc. And our experience with gifted education is that the attitude there is very much “sink or swim.” If you sink, oh well, you’re not gifted enough for our program, you’re someone else’s problem. That, or you get people’s attempts to psychoanalyze the reason for your “underachieving” shoved down your throat. (”You must be: acting out because of family problems/jealous of your brother/trying to spite your parents/afraid of success/etc etc…”)

…so, yeah. Often felt varying degrees of the “get out of my movement, you’ll spoil the model minority image we want to have, people should see us and not you” pressures ourselves, from those who were invested in the aspie stereotype. There were some people who apparently interpreted us as somehow trying to be purposely obnoxious, when they started talking up Aspie Virtues and we butted in to say that, actually, those stereotypes really didn’t apply to us, and we didn’t actually have all the skills and abilities they were attributing to “high-functioning” types. Like we were trying to purposely sabotage their movement, or something. (Well, actually, I think that if your movement only applies to people with certain abilities and who look almost-normal in the right ways, it doesn’t deserve to succeed anyway.)

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ballastexistenz said in November 30th, 2006 at 1:06

John Best, when I wrote “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.”, I was referring in part to people like you.

Just because you have your own ends to use the fact that aspification exists for, doesn’t mean I will ever agree with those ends, which is why I stick to where I am. I want a wider version of what much of the autistic community already offers some people — just one suited to more autistics than just that small bunch — I don’t remotely want what you’re after.

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zilari said in November 30th, 2006 at 1:55

Not the best language tonight but the ideas will hopefully come through.

Years ago, there was a kind of person designated as “autistic”. Such people were often assumed to be non-persons. Horrible things were written about autistics. Autistics were put in institutions, treated like “eternal children” or monsters.

Then in the 1990s, Asperger’s was put into the diagnostic criteria. Subsequently, there was a kind of backlash against the idea that someone who was in any way autistic was “broken”. This was a good thing of course but it seems to have gone wrong somewhere along the way — in the sense that “not broken” was exaggerated in some cases to “doesn’t need any help or accomodations”.

You can still be “not broken” and need accomodations. You can still be “not broken” and require alternate means of communication. In short, being Not Broken doesn’t mean the same thing as, “can do everything in the typical way”.

It saddens me that there is any kind of divide between people who for all intents and purposes should be allies. Though one thing that anyone observing the various debates going on will certainly realize is that autistics are most definitely still subject to “human nature”. We’re not automatically “above” conflict and disagreement by virtue of being autistic. All of us come from different contexts and different life experiences. And though we might be more likely to communicate effectively with each other than with nonautistic people, there’s nothing magical about being autistic that makes you able to understand the nuances of every other autistic person in the universe.

For a long time, it seems that the same kind of stereotype has been able to dominate the “autistics who communicate online” arena. What I’m seeing more and more of is people coming out of the proverbial woodwork who do not fit the stereotype. And this seems to be confusing some people, and I really hope something good comes of it in the long run. It very well might, because one thing about stereotypes is that if they are unrealistic they will eventually come crumbling down. Reality is insistent like that.

Personally I do fit some aspects of the “aspie geek” stereotype. I do have particular interests in science and computers and was considered “gifted” as a child (though my experience in the school gifted program revealed that it really wasn’t much different from regular school in terms of the social and functional environment — I didn’t magically start “fitting in” just because I was stuck with kids who supposedly had standardized test scores similar to mine).

However…there are other things. There have always been other things. I really do often feel like I have more in common with the people labeled as “low functioning” some of the time — and I’ve looked that way enough of the time such that people around me have gotten worried. When I read about people struggling with things like head-banging…and being given neuroleptics…and having trouble figuring out how to perform supposedly “basic” tasks…this hits home for me far more than do stories about “worrying that nobody likes me” or “not knowing how to ask people out on dates” or other similar “awkwardness” stereotypes.

Yes, I was awkward growing up but not just in the sense that I would point out things nobody was supposed to be noticing. At age 11 I was still scripting movie lines at people rather than “greeting” them in a supposedly appropriate manner. I didn’t know how to wash or brush my own hair until I was painstakingly taught as an adolescent. I was chronically dehydrated for about 5 years when I was figuring out how to live on my own (to an extent; I’ve generally had one or more roommates) because I did not know how to tell that I was thirsty. My weight dropped to double-digits at one poin,t and according to one person who knew me, I looked “gray”.

I also have sensory differences that are not “mild” by any stretch of the imagination. My visual perception is such that overcomplicated rooms end up looking like a kaliedoscope of polygons and pixels until I am able to hone in on one detailed thing at a time and gradually build up something like a coherent image. When going to a new place for the first time I have to read all the text in the room, locate the electrical outlets with my eyes, determine all the light sources, examine the doorknobs and handles, etc.; only then will I have a sense of where the walls and floors are. Walking into a grocery store, particularly an unfamiliar one, probably looks to me like a Disneyland parade through prism lenses would look to most other people.

I thought everyone saw the world like this for a long time, and I still can’t imagine it being any different. I am not exactly sure what it looks like to other people when I am acclimating to a new place, but I have been told I sometimes look “disoriented” and I also cannot generally answer questions when trying to assess new stimuli. Around puberty, people in my school (students and teachers alike) started accusing me of being on drugs; one teacher even called my parents in for a conference because he thought I looked “spacy” and “asked weird questions”.

My hearing is very acute, particularly for certain pitches but I have trouble distinguishing voices if more than one other person is talking. It has been less than 2 years since I learned to figure out when I was getting too hot.

As a child I used to have long meltdowns and periods of obvious discomfort in which I had no way to tell anyone what was wrong, since I didn’t know how to identify sensations. For years I remember having what seemed like two “modes”: fine and uncomfortable. The “uncomfortable” could be anything from being hot to having a headache to being hungry, but none of them registered in any localized manner.

With the help of an observant partner, I’ve been able to learn to identify things like heat and headaches (for years I was convinced that I “didn’t get headaches” when it was really that I didn’t know how to tell when it was my head that was hurting or even what that kind of physical pain actually registered like).

My basic life needs and such are now fairly well managed (I have help with some of them). I do have a job, and I have interests that I engage in. This blog by no means summarizes my entire life. I don’t talk constantly about my difficulties in other contexts (particularly online) mainly because they’re just not relevant to the discussions, however, when I see people saying things like…well, “people like you aren’t REALLY disabled but those ones who can’t talk should just be aborted” I cannot help but think there is a big problem. It’s disappointing because in some cases it’s as if I start to think, “Yay, these people accept me!” but then they go on to start devaluing someone who is actually more like me than they probably realize without knowing me in person.

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ballastexistenz said in November 30th, 2006 at 2:06

I can’t count the number of times that I have been accused of creating a divide that I merely pointed out. Even if I didn’t think the divide should actually be there (as in, the sociological divide excluding a certain kind of people), just pointing out the existence of one was akin to creating it.

Similar to how it used to be very popular in some circles (may still be) for parents in mostly-parent autism groups to point out how “divisive” autistic people were being for pointing out all the ways in which we were not welcome with them. They created a divide (an autie-hostile environment) and then accused any autistic person who had a problem with this, of creating the divide by mentioning its existence.

(Hint: If you’re an organization mostly of non-autistic parents of autistic children, and there is not a large amount of autistic representation, your environment is almost certainly hostile to auties. Or else we’d be there, not in tokenistic ways, but in large numbers.)

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zilari said in November 30th, 2006 at 2:06

Er, when I said “this blog” in the above comment, I meant my own blog, not Amanda’s. In case that wasn’t clear.

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LB said in November 30th, 2006 at 3:01

I find it really surprising - although I shouldn’t I guess - some of the attitudes on some AS forums where there doesn’t even seem to be a grasp that what is being said is in fact insulting. Some want to create this idealized persona of the genius Aspie and it seems like the “retarded” and “crazy” ones get in the way of that objective. Or else if these difficulties are encountered than they are either co-concurring conditions (which is fine because not everyone on the spectrum deals with some of this stuff) but more often the blame is laid on society - instead of perhaps some inherent inclination towards some of these issues. Alot of problems with interaction and bullying and such may exacerbate such things considerably but that is not necessarily cause. I mean it may be for some people as I said, however, this extreme desire to want to separate any MR or MI issues is a trend that I have seen parent groups do also.

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laurentius-rex said in November 30th, 2006 at 7:56

I am just getting totally tired of being misunderstood.

In terms of stereotypes I certainly look more like the super aspie geek type with my sitting on boards and post graduate level studies and I have a fondness for positive imagery because I don’t want to be separated from my achievements. However I would like people to see them not in the light of a performing dog. As I keep trying to point out, these kind of arguments are not exclusive to our “movement” if I dare even call it that considering the contradictions in it. This you see in the disability “movement” in general. My mum made the transition from a “lightly impaired” person to someone who needed total 24hr care due to the aggressiveness of her condition, but she still represented the same “message”. There are within the disability movement those whose invisibility prompts them to avoid the “stigma” of association rather than challenging it. At some point in my own journey within the movement my mum challenged me to decide which side of the divide I was on.

For that reason I cannot define my “disability” totally in terms of Autism because although that is a major part of my cognitive and perceptual makeup, I have other “impairments” too and it makes more sense to be part of a wider movement which does not define one by the impairment, but by the fact that whatever “impairment” one is judged to have (I take issue with the word impairment but use it here to identify what others designate as such) one is treated as less than equal because of it. It is that lack of equality that should drive the solidarity.

There is a lot of false reasoning being used by the aspification camp to justify looking down on the disability movement. The claim that Aspies for Freedom or whatever are part of a civil rights movement is a false one, for anyone who has been part of the disability movement will realise that the disability movement grew from the civil rights movement and learnt from it. It is to deny that any “disability” or “impairment” is also a part of the natural order of things, as unavoidable as being “aspie” is. These Aspies are making a moral judgement that it is somehow “dirty” or “taboo” to identify oneself in such a fashion. Well what would one say if disabled peoples organisations did not want to associate themselves with black people or immigrant minorities because that was beneath them ?

That isn’t to say that prejudices and imbalances don’t exist within disabled peoples organisations, they do and I am against that as well.

I want to be seen positively, however I want my positive traits to be seen as an honest part of me, not as some sort of spin off from being Aspie, White, Anglo Saxon, Protestant or whatever. I am human, I have failures as well, things I can never do. Both my achievements and my failures are set within a context of the society I have grown up in, which has been conditioned by attitudes towards disability, class and gender. I see Aspification as part of the same oppressive machinery that divides and rules.

Labels have there uses and there time spans, I think it is time for the usefulness of the Asperger label to be disregarded, I think in time it may be that Autism will go the same way as well.

I suppose I will do the Haile Selassie thing and say that until the label on a man’s cognition is no more significant than the label on his trousers there’s going to be war.

Now there is a fine statement of contradictions, because I say “man” as did Selassie and of course designer jeans are of significance so I am just playing around with words again in the hope that people see the subtext in that whatever you say someone will take a different meaning from it. The problem is when one label sets you in opposition to another persons label because you have swallowed all of societies hand me down crap that goes with it.

Aspification is a social learning process, learning to take ones designated place in society, learning to be not one thing, but another, but still not at the top of societies ordering from perfection down to unworthy of living. Those who take the Aspification path are not a liberation movement they are a reflection of societies normalising values.

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Ettina said in November 30th, 2006 at 19:44

I remember reading a book Making History about the gay rights movement. At one point they were talking about how some gay people, who argued that they were ‘just like everyone else except for what they did in bed’, were upset that some ‘queens’ had shown up at this one protest, because they were too ‘gay-looking’ for the people who wanted to say gays weren’t really that different.
I think there’s a lot of that in the autistic movement too, even though many HFA types (including myself) emphasize that we’re different. I used to think it was like you’d measure all sorts of skills on some scale, and if the two people balanced out overall they were both OK. So for example if you have someone who’s strong but not smart and someone who’s smart but not strong, they’re just as good, but someone who’s not smart or strong is only as good as them if you can find some other talent to make up for it.
Another thing is that often people think that help only comes in one form. For example, I’ve read stuff by crazy people who say they shouldn’t be put in mental hospitals, they should be left alone, and I think “what about the people who aren’t fine on their own, with the same supports everyone else gets and just having their weirdness accepted?” I think people like that need help, but not the kind of ‘help’ the psychiatric system is providing.

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n. said in December 1st, 2006 at 11:21

Someone, maybe Larry, mentioned racial/cultural groups and civil rights in another posts’ comment. It reminds me of the curious situation when we talk about immigration in the Spanish classes, and I just want the students to realize that Mexicans and other immigrants are real people, and that even people here illegally have human rights and stuff like that. The students who actually know some Hispanics and other immigrants personally (maybe at work or in their neighborhood or at church) pretty much universally respect them as people, and maybe even appreciate aspects of their culture. So there really is this huge effect from just getting to know people that are different from you.

I have found the same thing in my own de-aspification process, if I can call it that. At a certain point I started reading the experiences and perceptions of people, like AB and Droopy, who could be labelled LF and trying to understand about their lives… and, I like to think, even relating with you guys as equals (although we have had very different experiences and you know a lot of stuff I had no idea about and I am often scrambling like crazy to fathom what in the world you are describing). My whole concept of the meaning of autism has been turned upside-down or inside-out. And I very very much appreciate this.

AB, I think you were saying in chat that wanting to understand about other people’s lives is “a useful curiosity”, and I am happy to have “caught” that particular curiosity. And there’s one very personal thing that I have mentioned here before: I won’t be afraid of combining my and my husband’s autistic genes. I still fear having a baby (because of my own ineptness), but I don’t fear that baby being autistic.

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n. said in December 1st, 2006 at 11:22

PS: Sorry, Larry. It was in this post, in the comment just above. Silly me for trying to read 3 posts at once in different windows!

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elmindreda said in December 1st, 2006 at 21:48

Very good advice, and very much what I’m trying to live by, most especially since I’m starting to get invitations to give presentations/lectures/wossname on autism for psychiatrists and soon perhaps institution staff. I’m worried that I’ll start turning into a self-narrating zoo exhibit, and I wish someone with firsthand knowledge of the inside of institutions got to speak in my place, but I’m doing my best to raise issues beyond those relevant to me, and hopefully I’m doing more good than harm.

I wish I had specific questions to ask people with more knowledge, but the questions I have are more along the lines “is the structure in my head somewhat correct”, and I don’t think I can ask those in less than a few dozen pages. Perhaps when I get my new keyboard I’ll give it a try.

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resonanteye said in December 26th, 2006 at 20:44

If I had seen that post all I could have said would be:
“where do you live? I’m coming (or sending another member of this group, or finding a way for someone) to cook for you.”

That the people offering this kind of real everyday support understand that you may not be able to communicate with them in person or deal with them at that time, that tyou didn’t need an insititution, but that you needed to eat and at the time couldn’t manage it -well, in this group, we all know how that can be. The fact that you were given so many opinions and so little actual on-the-spot support really, really sucks.

I don’t care if you ever “learn” a single “lesson”. I care enough about all autistics to want you to eat when you have to. Simple as that. And why you’re having trouble or how you resolve the difficulties isn’t my business, necessarily, but it is my concern. I can learn a lot from you, and have been in the same position many times. Therefore helping you is helping myself- I wish there was more actual help we could give to each other, as a group, on a very practical basis.

I’d make you anything you could eat. I am lucky enough to be safe, if not excellent, at cooking. Now if anyone wants to do some laundry, I can give you directions to my house. ;)

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Melody said in May 21st, 2008 at 3:48

Some people seem resistant to grasping that autism doesn’t have to be JUST a difference or JUST a disability, but can be both. A lot of times the people who aren’t disabled - or who are but can pass - and so avoid the label for the stigma but in fact add to it.

I have wondered idly for some time how people would classify me if they saw videos of me doing stuff on YouTube. There’d probably be a wide range, as well as a fair amount of “she can do X, so clearly she’s faking her inability to do Y” which I have got a lot in my life, and is something I am quite familiar (unfortunately) is not unique an experience to me.

I personally refer to you (too frequently I suppose), though mainly I just think that your ideas and how you express them, often it’s exactly the thing I think ought to be representative of an autistic rights movement. That, and I have trouble remembering what names refer to what people, and most bloggers I’ve read don’t have videos of themselves on YouTube.

I also don’t relate much to the socially awkward part of the “aspie stereotype”. I have much more notably stims, and movement, difficult to initiate and the like, but can do socialization. I’m too tired now. Should sleep.

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Ettina said in December 10th, 2008 at 22:29

“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.)”

I know a teenage girl with Rett Syndrome who seems to have that issue. If she’s standing, she’s walking. The only way she can stand and not walk is if I hold her in place. If I want her to stay in one spot, I have to prompt her to sit down.

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meep said in December 11th, 2008 at 15:38

I am considered high functioning because I have a graduate degree, job and friends. But it’s so hard to get people to understand that I do have issues with eating, some of the same ones you mentioned in your post. I have learned to eat a small amount of food upon entering home from work and then scheduling dinner on my cell phone at a later time, otherwise I will enter this vicious food cycle.It works some of the time, but not when I am overloaded or get distraced by other tasks. I have never been able to feel hunger, I just know if I don’t eat I will experience headaches, nausea, and dizzyness.The expert I talked to told me I was becoming anorexic and that I should just start eating and then everything would be fine.If I wait too long to eat, my brain starts to dissociate and I can’t get my body to do anything because I can’t really connect to it anymore. I have sat on the floor in front of the refrigerator for hours because I could not get my body to perform the actions neccessary to get food out of the fridge 5 feet away.I have gone without food for several days in this way. And that’s just eating, staying hydrated is even more difficult.For me there is a relatively easy solution to this, I need someone to eat with me. The only time in my life I was able to eat regularly was when I had a job with a scheduled lunch break and a roommate with OCD who ate dinner at the exact same time every night and didn’t mind me doing the same. I wasn’t able to initiate the action but I could mimic her, I could smell her food cooking as a cue, I could ask her “what was I doing” and she could tell me that I was getting out pasta or something so I wouldn’t end up in the living room vacuuming. But I am regularly told by those I look to for help that I am fine and I’m just looking for a label so I can try to be different or to blame my moral failings on. I’m tired of this stereotype, it hurts everyone it is associated with.

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David Harmon (again) said in January 7th, 2009 at 7:20

As I’ve said elsewhere, I’m much closer to that “Aspie” stereotype than I am to Amanda’s situation. Even so, (re-)reading this article, I’m struck yet again by how many of Amanda’s issues, and those of some of the commenters (here it’s zilari, and now meep) resemble mine in type, though much less severe.

And even at my “level”, I’ve been hit with that crapola about “learning the consequences of my actions” stuff too. Part of that is I didn’t get diagnosed on the autistic spectrum until I was almost 40, about three years ago… but, I’ve always seen a notable lack of interest as to why I might have had problems doing whatever, much less help in solving the problems.

I don’t think the Aspie label is really useless, but I do agree it’s not half as well-defined as many people (especially some Aspies) think! It’s more like a broad horizontal stripe across the middle of the “autistic spectrum”. Given how poorly mapped the spectrum is, that’s at least some sort of reference point, but it’s still just lines on a map — and as always, “the map is not the terrain”.

I do kinda wish I had someone to help me along in daily stuff, but (cost aside) I’d feel bad about “tying up” a decent aide, when some folks need that help to survive! (And I wish I had local friends like resonanteye!)

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