Demographics of who does/doesn't want a cure

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Do I want a cure for myself or a cure available to the public? Two very different things. For myself, no. But I can't see any harm in making it available for those who do have problems that they wish and need go away. I'm voting as though you meant the latter.

One of the things I've come across while reading autistic bloggers is how the ability to communicate is used against autistic people. Like, if you're high functioning, you're not really autistic enough, and if you can communicate, you're not really low functioning (one of the many reasons functioning labels are not particularly relevant). I am also not sure that such a person who is completely incapable of communication exists. I suspect that such people who are perceived as "incapable of communication" may not have access to the resources and support necessary to communicate (such as facilitated or augmented communication). I am not saying you're making this argument. Rather, this argument is frequently made by NTs to autistic people to shut them up, especially when it comes to self advocacy.

The italicized phrase bothers me as well. I don't think that disabled people should need to give something to society in exchange for being supported by it. This would generally cut many of the people who most need assistance off of that assistance. I also don't think most people in general provide anything to society, so I do not think that there should be an increased burden on disabled people, you know? I consider it the decent and humane thing to provide people with the resources and support they need to survive and thrive.

Last edited by Verdandi on 31 Dec 2010, 8:30 am, edited 1 time in total.

I am not against a cure in principle. I, personally, do not wish to be cured.

ruveyn

I voted pro-cure but I don't like the terms used. I don't want everybody to be cured, I just want to be.

So I spend 60 odd years learning how to survive moderately well in the world, I should get cured and learn all over to be maybe my brother? Forget it.

There is no such thing as a person who cannot communicate in any form. There is no such thing as a person who gives nothing back to the world. Many of the evils of the world come from believing these two things even exist. It's cruel and dehumanizing, there is no pretty way to describe the destruction such views of others causes. As to those who argue that I have something to contribute that others do not, there is very strong language I wish I could use to you on this forum. I will have to simply say that you don't understand my contribution to the world if you think I have one and others have none. And that until you change your views of other disabled people you are creating the hell many of us (yes including me for I am treated just the same in most of my life as those you would separate me from) have to live in. 

Why do you think I come to this forum. To selfishly prove that I alone have a voice?  No it's largely to show that everyone has a voice and everyone has a value, period. Everyone contributes. Everyone.  Until you get that, you are unwittingly helping some of the greatest cruelty and evil that exists in the world. I will not allow you to so easily separate me from the people you would like to separate me from. You're just flat out wrong and it insults and degrades me as much as anyone else (how else do you think I've had to live with even in recent years having my cognitive skills described as nothing, this experience puts me in with those you similarly describe whether you or I want it or not, we share too similar oppression and degradation to be so easily divided by people just because some of us manage to speak out -- and since many of my impairments are progressive I may not even be able to do that after awhile). 

Anyway both of you could stand to watch this video I made based on a combination of my experiences and others. It's my favorite of my videos despite it not being the one that went viral. Because this one cuts to the heart of that experience and what it really means. (The other one was based heavily on this one.) So if you want a clue as to what it's like being treated like a nobody who can't communicate or contribute please watch it and maybe you'll see what I mean when I say it's cruel and terrible. I'm more serious about this than about nearly anything else I say here. And I completely resist being given conditional personhood that's denied to others just because right now I can communicate some specific things. I am trying to pave the way for others not cross over to the other side.

[youtube]http://www.youtube.com/watch?v=4c5_3wqZ3Lk[/youtube]

My AS is a part of my personality. It causes some problems and it's not always easy to live with it, but on the other hand, I get some benefits like the ability to retreat to my inner world when I feel the need to be alone. Without AS my life might be less complicated, but my personality would be a different one. Thus, I don't feel like I need to be "cured". (Not to mention that the word "cure" implies that AS is some kind of disability or illness.)

On the other hand, I am all for therapies and other measures that help people handle the symptoms of their ASD better. While I don't regard ASD as a disability, I know that sometimes people need a little help to get along better with others or even with themselves. But I wouldn't call that a cure; it's more like a rehabilitation programm that helps people find a way to deal with things they'd find difficult to handle on their own.

High-functioning...I voted for anti-cure, but I don't feel that's completely accurate. Personally, I don't need a cure, and more importantly, I don't WANT a cure. Sure, life would be easier if I understood social interaction better, but I really do feel that AS is part of who I am. I don't feel that getting rid of my AS would make me a better person, and that is the only reason I an think of to change who I am. I can (and have) change negative things about myself without a cure. So what if my brain is wired a little differently from the norm -- I rather like being different!

However, I am by no means against the existence of a cure, were such a thing available. I take anti-depressants and they make my life much easier to handle. I would hate to be denied my medication, so I would never deny someone with AS medication that would make the AS go away if they wanted that. AS makes some people miserable, and I don't think anyone should have to suffer that way if there's another option. So I'm not anti-cure, should a cure be found; I just don't want it myself. I'm just fine the way I am.

Yeah, I know, it really gets me annoyed when people tell me, "Oh, you can type, you can even talk, you don't know what it's Really Like to be autistic," when actually most autistic people can talk. And not just a simple majority--closer to "almost everybody", to some degree, and that doesn't even go into the group who are using symbols and pictures instead of speech, which is pretty significant too. You get this really annoying idea where they'll say, "Well, if you can talk, you don't really know what it's like to be autistic, so you don't have any say in what we say about autistics. And if you can't talk, then we've got to speak for you, so you still don't get any say in it." It's a stupid catch-22 and they need to stop making these assumptions.

Regarding "everybody can communicate"--yes, everybody can. I would caution you, though, not to think of communication as only symbolic communication of the sort you might get with FC, PECS, or some other communication device. Communication is far more basic than that. It's giggling when something is beautiful, whimpering when you're hurt, snuggling up to someone you love. There's lots of things that non-verbal, non-language-using, non-symbol-using autistics will do that other people can learn to understand--and that's communication. An idea gets from Brain A to Brain B. Simple as that.

One of the problems with facilitated communication is exactly this: People assume that if you're not using symbols, then you can't communicate, so they force you into using symbols even if you haven't got the ability to use them; and then they put words in your mouth--unwittingly, in many cases--because they're not willing to look at what you do to understand what you're thinking. People who use FC are in a huge danger of becoming unable to communicate entirely because their communication comes mostly or completely from the facilitator; so their other communication is ignored in favor of the text that doesn't actually come from them thanks to the pro-symbol bias of the people around them. If a person uses FC, their facilitator needs to be absolutely blinded to the conversation going on around them and to the keyboard itself. I'm talking blindfold, noise-canceling headphones, whatever works. If the communication is real, then the facilitator needs to butt out and let the person do the talking. And if it's not real, then stopping the facilitator from hearing the conversation or seeing the keyboard will reveal that fact. The problem with FC isn't so much that "It's not real communication" (in many--probably most--cases, it isn't); it's that when people assume you are communicating with symbols, they ignore all the other communication you are already using through your behavior and your non-speech vocalization. And that cuts you off completely from being able to get any of your own thoughts across at all.

First if by "both of you" you also meant me because I said something about not requiring people to contribute to get assistance as well as a comment on communication - I am sorry I made my point poorly on that. I do know everyone does contribute but it seems to me a lot of contributions are simply ignored or devalued because they are not the kind of things that are enshrined in society. I've spent a few years struggling with my family's assumption that I don't contribute anything because I have been unable to work (and their lack of awareness of other things I've done), and I just don't believe that adding such a requirement to assistance would help because someone would always fall through the cracks despite their needs.

If I gave the impression that I thought anyone is unable to communicate, I am sorry about that as well. I was trying to say that I do not believe that such a category of autistic person exists, or needs to be defended by others in the way Ariela stated.



I have seen this video! And your viral video. They made an impact then, one I tried to communicate this morning with my first reply.

Last edited by Verdandi on 31 Dec 2010, 6:12 pm, edited 1 time in total.

Yes, thank you. I should have said those things, but AC/FC is something I'm a bit interested in, so I tend to focus on it. But yes to the nonverbal communication.



Yes, this all makes sense. I have come across accounts by autistic people who have gone from FC to AC to perhaps verbal communication who suggested that while the FC wasn't perfect it helped, which tells me it can be at least partially valid, but it's still got problematic elements? You are totally right that the interpreter needs to be removed as much as possible from the process.

He only lived 51 days. I watched his struggle for survival at Shands Hospital in Florida. Whatever a Child's disability is, I can't imagine a Parent not wishing for a cure that would allow their child to experience the world with no disability. Most of the time this wish does not match the reality of nature or the capabilities of medical technology.

When I was young many people told me I was different and much of the time it was not very kind in nature. I spent my early life proving to myself and to everyone else that I was okay. When I convinced myself that I was okay, it didn't matter what others thought. When my child was born, I felt partially responsible for his disabilities, as I think many parents do that have disabled children. Most of the time it is not a rational thought, but the memories from my youth came back, like a warning I ignored, that I was not meant to reproduce.

I came to value my life even more. My child never had the opportunity to adapt in life. His life would always have meaning, if it made me a better person. Every person on this website is a valuable person, but my perception is that many struggle with the value of their existence. For the people that feel okay as they are, this is probably as good as it gets for anyone, AS or NT.

If Autism is a neurological, hardwired condition of the brain, it is no more likely to be cured than many other neurological conditions that receive research funding marketed under the best case scenario of a cure. For the Autistic People and their families that struggle with Autism, "the hope" in a hope for a cure may be part of what keeps them going. I wouldn't want to take that away from them.

pensieve, maybe sunglasses would be helpful. Also, maybe an air filter would make it better when you're at home. And maybe AIT for your auditory issues, with the caveat that it's a lot of time and money and isn't permanent. But it does work wonders.

Ariela, as others have said, I disagree that such a category truly exists. Some people may come closer to it than others. Some people appear to fit in this category to the right (wrong?) kinds of people.

anbuend, I'm not arguing that there is anyone worthless, merely people for whom it would be difficult to point to specific examples of "this person did this thing that measurably improved this other person's life in this way." And that the logistics of how to care for people who need it could use a lot of thought. Not to say that it shouldn't be done, but the how is a hugely sticky question. Also, what viral video? I didn't know one of your videos had gone viral.

aghogday, I keep wanting to say some stuff, but I suck at grief so I'll just keep my mouth shut so my foot can't enter.

Anbuend's video that went viral:

[youtube]http://www.youtube.com/watch?v=JnylM1hI2jc[/youtube]

Oh, that one. That's a good one.

Verdandi -- didn't mean you. Meant two other people (can never remember names on places like this) who talked about people "not contributing" as contrasted to me (who is only seen as contributing in a sense of the word that already isn't how most people use it, so it seems like.. if these people didn't know me or know of me I'd be lumped into the same group of people but since they do know me or know of me I'm not, things like that). I oddly don't have as much trouble with people who say nobody contributes, since at least that doesn't discriminate quite so much.