A question to certain high-functioning people

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This is my question for anyone who believes that it's okay for them to be autistic but that some specific subset of people (low-functioning or whatever) should be cured. I am not judging this belief. I do not want to discuss this belief. I do not want fifteen million people to jump on this thread and point out that they don't have this belief. All I want to know is-- what's the criterion? The one you lack that means you don't need a cure? Or if there are multiple criteria, what are they?

I would like to be cured but I would be very afraid of what they would have to do to do it. You would have to rewire an autistic brain so it would function properly. Have you ever seen people who were in an accident that involved a coma or a severe head trauma they have to relearn how to walk, talk, feed themselves, and to function properly again. They said it is like starting over again. What would you loose durring this retraining? What would remain?

I would be curious to see how I would change but in no hurry to do it.

Last edited by Todesking on 03 Mar 2011, 1:41 am, edited 2 times in total.

edit.

I think the critera should be simple, do they suffer from it and want to be cured. I dont think anyone should force a cure on them though

I want all autistic people to be understood in a way that is both functional to society and functional for the autistic person's life. There is no need to cure something that creates such beautiful people. We only need to understand the different forms of functioning and the reasons behind them. The only who can decide whether or not a cure is need for a person, is the person themselves who want the cure.

I would considered it a quality of life issue when they are still little and have not been autistic very long. The cure would have to a painless medical procedure for me to even consider it though. But, if they are already adults they are use to being autistic they should be allowed to make the choice themselves. I think if it should be manditory if the child is very low functioning and is an extreme burden to the child's family. It would be like when you fix a child with a facial deformity so they can blend in with society better. No one wants to see a child be an outcast. I would have loved my childhood if someone came along and cured me of my autism it would have given me a chance to be normal and not forced to learn how to adapt my autism to the fit in among the NTs. It would have saved me a lot pain and suffering. But now as an adult with Aspergers who has lived 40 years I would certainly be afraid to change over now. With what I posted before as an expample why.

High functioning kids on the other hand are a different story curing this child's autism you could be getting rid of the next Enistein, Beethoven , or even Bill Gates you could deprive society of the next great thinker or inovator. Its enough to make your head explode trying to figure who do you allow to be autistic or who do you cure?

Todesking, I know I said I didn't want to debate this or anything, but I just can't not make this point: at the ages when you could possibly rewire someone's brain without damage, there's no way you could possibly know whether or not they'd be high-functioning. Temple Grandin didn't talk till she was, what, four? There's a poster on this board (can't remember who) whose parents were told she (?) would definitely never learn anything and end up in an institution, and she (?) is apparently doing fine. Whereas other people regress, looking normalish until a certain age and then burning out at some point between the ages of two and fifty, most of them far later than you'd be able to rewire their brains. How could you ever know at a young enough age?

Thats why I said the whole thing can make your head explode deciding who gets "cured".

Last edited by Todesking on 03 Mar 2011, 2:55 am, edited 1 time in total.

Aspects that pose a significant problem and should be cured.

1. Inability to communicate needs effectively. These are non-verbal individuals who cannot communicate effectively through other means or verbal individuals who cannot use or understand language in an effective manner, and cannot communicate effectively through other means.

2. Inability to feed ones self. These are individuals who cannot prepare meals for themselves without supervision, or need others to literally feed them or aid in feeding them. Many of these individuals would not know to eat when they are hungry or communicate that they are hungry and need to be fed, in a way that the average person would understand.

3. Inability to maintain a reasonable level of hygiene. I'm not talking about the person with AS who can't be bothered to take a shower, I'm talking about people who don't know how to shower or bathe on their own, or can't for some reason, and need someone to prepare the shower or bath for them, and even bathe them.

4. People who cannot look after their own safety. Many autistic individuals are oblivious to situations which present great danger, thus as running into the street or jumping into a river because they like water.

As you can see, this excludes most of the people on this website from those who I consider in need of a cure.

I am basically, anyone with severe delays in basic life skills and who requires dedicated care from other individuals, well into adulthood. The goal of the "cure" would not be to make them NT, but simply address the issues I listed above.

I can communicate sufficiently, I can bathe myself, I know when to eat, what to eat, how to cook what I want to eat, how to find out how to cook it if I don't know how, where to buy the food, etc. I am not oblivious to obvious dangers and I do not need anyone to look after me, as it should be as I have AS, which does not involve a delay in life skills other than socially.

So, I am not in need of a cure for myself. It would be nice to be more socially graceful but I see my shortcomings as the result of a tradeoff which is justified by very strong strong points. My biggest difficulties stem from NT misconceptions about those with AS, and can be applied to those with NVL as well.

Yeah, indeed. I am not one of the people in the OP since I do want a cure for myself. But yeah, it is high time we have a bit more control about our mental functions.

Unless your shortcomings could be addressed without diminishing your strong points, and that conceivably could be the case.

I'm with Chronos on this one.

By the way I'm not even capable of buying my own food, just bread and milk from the corner shop. Anything more and I have to write a list and get my mum to buy it. I get such bad sensory overload I can't go into supermarkets and if I ever got a job that would be just one of the things I'd struggle with.

Do I want a cure? Well I don't know. How many more years can I take being unemployed and being dependent on my mum. She's struggling too because I'm still there and I can see and feel her frustration. I think that's why I can empathize with parents of autistic children. Sure I don't need anyone to spoon feed me, bathe me and dress me anymore but I'm just as much as a burden on my mum.

It's not about making the kids NT, it's about giving them a chance to lead an independent life. And none of that garbage about how no one is truly independent. Living on your own, working and taking care of yourself and family seems pretty damn independent to me. That's the life I may not ever know.

I do not want a cure for myself. If I were unable to live independently due to autism, I would want a cure for myself. Simple as that.

This is not to say that I think people who cannot live independently should want to be cured or that I want them to be. That is theirs to decide.

I am as high functioning as they come and insist that if you figure out how to fix this that I deserve to be a candidate for that cure as well.

Thank you....

I won't argue with anyone, since that's not what's wanted on this thread. But...

Throughout most of my childhood (including adolescence), I had a combination of severe receptive language delays (inability to understand all or most language), and problems with using expressive language to actually communicate my thoughts, once I could say words at all. I could, after a point, mimic spoken and written language well enough (by memorizing what other people seemed to say in various situations, from watching them and from books, and as I got older I even learned to make things always sound consistent with each other at all costs) that it took a trained professional to tell that I was not communicating or barely communicating.

Occasionally my thoughts and the words I used would somehow line up perfectly, but usually this was not the case. And I was actually unaware of what the problem was. Past a certain age, I knew I was missing something enormous that other people had, but I literally could not tell what it was. (Because I also had a lot of "invisible" but enormous delays in specific cognitive skills.) Also, there was something kind of weird that happened that sometimes made what I said communicative, but not in any typical sort of way. It was like, the set of words that I used, would have some relation to whatever I was perceiving, but no direct relation to anything I was thinking. I once saw a video of an autistic woman who described how as a kid she'd sort of unconsciously sing TV jingles that somehow pertained to her situation, but not in a direct word-for-word and thought-for-thought way, more in a "thematic" way. It was a little like that. This wasn't all the time, but it did happen sometimes.

What really turned me around was when I began meeting other autistic people outside my family (and my family doesn't contain any people close enough to my subtype of autism to make a difference in this regard, despite containing loads of autistic people) around the age of seventeen or eighteen. I began assimilating the language they used in the same way that I had assimilated everyone else's language. But since I was meeting people closer and closer to what I was actually like, this began actually communicating things close to my own thoughts. And when that happened, I began to sort of "wake up" (that's what it felt like, as if some part of me had been "asleep" my whoel life, and I had been merely sleepwalking and sleeptalking in some respects) to what it meant to communicate your real thoughts. And then I began to try to control this process instead of having it happen randomly.

I discovered to my alarm that I had very little control over my speech. I've described it as being like holding the short end of a huge rusty lever, and trying to hit a target across a room with the long end of it. I would sometimes hit the right part of the target, usually not, and often the lever would seem to take off on its own and hit an entirely different target. It was like trying to control something that is actually alive. Which is nearly impossible to do to that degree of precision. Additionally, speech was cutting out entirely for much of the day by the time I started trying this, because of an autism-related movement disorder.

Writing, on the other hand, I could control more easily. Still like trying to control something alive, but that thing that was alive got more and more in rhythm with who I actually was. I was still using the same word-bank I'd always used, but I was more and more using it to actually communicate, rather than to spew out long (I've always been hypergraphic, even when it simply meant copying the words out of books onto pieces of paper) and random stuff that had nothing to do with me and everything to do with what I thought some other person might say, or what was expected of me, or something like that.

It's been a long process, it was never instantaneous and it's not entirely solved now. In the last few years I've finally started to learn to never go on autopilot with someone because I had terrible, life-shattering results with that a few times. (I used to go into autopilot with language when I was either tired or uncertain of the answer. I'd just fall into my old pattern of letting the "living thing" that controlled my language go do its own thing. Doing this at the wrong time after you've really learned to communicate for yourself can be a disaster, especially when communicating with people who are not communicating with you in good faith.) I still do it from time to time, but I'm better at stopping that. I can actually easily just shut off my conscious mind, and my fingers will go on typing stuff that sometimes sounds plausible, and sometimes it sounds like one of those spammer programs on the Internet that splices things together that don't go together.

But all of this is at my best. Throughout a large part of most days, I have no language-based communication at all. Even when I have the ability to type genuine communication, (I just had to go back and erase random crud that resulted from zoning out with my fingers still going -- usually I don't say anything when this happens, I'm saying this just to illustrate this is an ongoing process). So, what I was saying. Even when I have the ability to type genuine communication, my understanding of other people's language still doesn't catch up with my ability to type language. Still. My receptive vocabulary is noticeably smaller than my receptive.

And unless I turn language comprehension on deliberately (which is not always possible), I don't even hear language. I don't even hear it as if it's a foreign language I don't understand. I just hear sound, and I don't even think to attach that sound to ideas of any kind the way language actually works. I often go through an entire day without understanding a word anyone has said to me, or even knowing that it could be understood, but simply relying on tonality and context to understand what action to take in response. A lot of this is because my default state (how I am without a lot of conscious effort to climb out of it) is no words, no concepts, no ideas, nothing but sensory information and the very concrete patterns formed between sensory information. It's the same reason that my default state includes no identification of objects around me or even their separateness from each other. My mind just doesn't work that way without being kicked into gear, and it's not always possible to kick it into gear.

So I'd say that growing up, I was definitely like this (despite appearances after I learned to fake verbal communication), and now, I am sometimes like this.



I can't prepare meals for myself with or without supervision. Often I can't even get something out of the fridge and microwave it, although I can sometimes do that if someone's already prepared it. I don't usually connect the sensation of hunger to any particular meaning, and I don't usually communicate that I'm hungry either. The other day I nearly got to the point of vomiting from hunger, when nobody was around to feed me. People normally give me meals on a schedule. As far as literally feeding myself goes, I at minimum need someone to hand me the food in order to "start me off" (even putting it near me isn't enough, as it doesn't trigger the action of eating, and an untriggered action is a probably-doesn't-happen action for me), and sometimes also need to literally be fed if I'm having a really bad day when it comes to controlling my body. I even have trouble with the act of swallowing (because of that same autism-related movement disorder), and often sit there with food in my mouth unable to get it to go anywhere. So I'd say I pretty thoroughly meet this one.



I can't bathe on my own and someone comes in to bathe me. At my best, bathing was a lot like speech -- if someone gave me heavy enough prompting (and it took a lot to make it possible for me to cross the boundary between outside and inside the shower), I could get inside the shower, mess around with the soap and water in a totally unproductive and useless way, and get out of the shower, often with whatever soap that managed to get onto me at all, unrinsed. This includes even after supposed ADL training in showering in a mental hospital (yay, stopwatch and clipboard). And I'm nowhere near "at my best" anymore. I also have trouble with other aspects of hygiene that are a lot more serious and pressing than bathing is. So this is another definite yes.



If my idea-mind is in gear, I can be aware that such situations are dangerous. However, this doesn't protect me at all, for a large number of reasons.

This doesn't usually enter into my mind (even if I have ideas in gear) during the actual situation itself. There is nothing about the situation that triggers the idea "this is dangerous" for me. Even though I actually know people who have either yanked me out of traffic, or insisted that I hold their hand when crossing streets, etc. well into adulthood.

I usually don't have ideas in gear at all, or not very well. This not only affects my ability to understand danger. It also affects how I perceive the world around me. Believe it or not, it takes actual ideas ("concrete" abstractions, but still abstractions) to do things such as differentiate objects from each other (including roads, cars, etc.) and to know the identity of each object. To me, a street and all the stuff attached to it is usually just a blur of light and sound that's part of everything else I'm looking at as well.

When I'm outside, the world is even more a blur of light and sound than usual. It's not inside my home, so it's an unfamiliar place, and it can be just a bunch of dancing light and stuff, not even forming coherent shapes. It's really hard for me to rapidly process information outside of very familiar places.

Worse, sometimes I'm actually attracted to sensations that exist either in a dangerous place like the street, or somewhere on the other side. This means I can run out towards them without thinking or understanding what's wrong.

Additionally, I don't always have control over my physical movements. This is less so now that I'm in a powerchair, but when I walked, I would often be (even if totally aware of the dangers) literally unable to stop my legs from taking me into the street or into some other dangerous situation. This is because I not only have trouble initiating movements, I also have trouble stopping them, switching direction, and other things like that. This could be a really bad, and scary, thing.

And I know there were a bunch of other reasons that I listed on a thread I actually created about having problems dealing with traffic, but I can't remember them all.

Don't worry, by the way. I don't go out alone, both for my own safety and other people's (and I can't just impulsively run out like I could in past apartments, since it takes a lot of effort to get out of my building). But I definitely fit into this category.

So apparently I'm not one of the "most" here who don't qualify as having any of these problems, as I either have all of them, or all but one (or all but "half" if you count the fact that I still have these problems a lot of the time when I'm not capable of actively entering language-mode). I'm not going to comment on what I think about that, because the OP has requested that people don't do that on this thread. But I just wanted to describe why a person who seems with-it at least when they post here, can still have problems like these, for anyone who's unaware of things like this. (One among many reasons I post here is actually so that people are actually exposed to people with these issues, instead of just thinking they understand what's going on with us in the abstract. Just recently on another thread someone was surprised that people like me actually post here.)