Erasing autism

[Prot]

It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been.

http://www.newsweek.com/id/197813/page/1

[milivica]

Yeah it's easy to feel that way if you think curing autism means erasing part of you. It's not like that, it enhances and brings out MORE of you. You are still yourself, but now able to enjoy others and have others enjoy you. You are able to borrow the perspectives of others, and you are understood by others. I understand what he's saying, but he speaks from only one side of the fence...he's imagining an unknown in a frightening and negative way, being erased. That's not what happens, but I understand him feeling that way. I used to hold on tight to my 'precious' aspergers as if it were a tangible part of myself.

[roadracer]

I didnt read the article, only what was posted, but I think this is another one of those people who have aspergers so so so so so slightly, only has a small pinch of it, maybe to the point that a bunch of doctors wouldnt ever give the dx. With there great sucess they have had, great job and great family, they tell everyone why autism should not be cured, but yet are they really thinking about the low functioning folks who dont speak and end up in the crapy group homes... Is this guy really saying that we should leave them alone, because autism should not be cured, NO, he is saying very high functioning people like him self should not be cured, and that he is proud of his autism... Maybe he does not know about functioning, and thinks if all aspergers people are like him, then autism must not be so bad. who knows really
I am not for a cure, but I am also not against it, I would like to do away with a bunch of the things I have trouble with, but would also like to keep other parts of it.
I just hear the same story all the time

[tgrimes]

I think it's just that 'cure' is such a subjective word, in all medical, so everyone needs to make their own philosophy about it, no matter their medical problem. I get what you are saying about 'same story' ... if the part you don't want to lose is not affecting daily functioning, then it is not part of what should be considered 'illness,' it should jsut be considered 'trait' or something.

[Prot]

I think it's just that 'cure' is such a subjective word, in all medical, so everyone needs to make their own philosophy about it, no matter their medical problem. I get what you are saying about 'same story' ... if the part you don't want to lose is not affecting daily functioning, then it is not part of what should be considered 'illness,' it should jsut be considered 'trait' or something.


I think higher functioning people ,whether it be those with an autism spectrum disorder or a psychiatric disorder, can sometimes be oblivious to the difficulties that both can create for those less functional.

If something is not affecting your functioning and you are not unhappy with it then i see no reason to have a 'cure' for it thrust upon one.
However if one's functioning is impaired then it would be advantageous to embrace any cure possible.

Perhaps the issue should be less about cure or non cure but about how to eliminate/reduce that which has an adverse effect whilst maintaining and enhancing that which is beneficial .

[LIZARD]

Perhaps the issue should be less about cure or non cure but about how to eliminate/reduce that which has an adverse effect whilst maintaining and enhancing that which is beneficial .

Bingo, Prot. :)

This is what I think, too, and I think my son does as well. He has repeatedly said he doesn't want his autism cured; he's actually proud of it. The only thing that isn't "even" with the rest of his development is his expressive language. If we could just boost that, I think his life could be so much easier.


LIZARD :)

[Aspigander]

I would like to do away with a bunch of the things I have trouble with, but would also like to keep other parts of it.

If you don't mind me asking, what parts of it would you like to keep?

I'm asking because I think I feel similar, some things I'd love to get rid of, but some things I'd like to keep, and I'm not sure if the things I want to keep have to do with my neurology, or if they're actually things that have to do with my personality.

[Aspigander]

Here's the problem I have with the word cure. It kind of comes from Mili's explanation of ASD as being a void or lack of communication within the brain, not the addition of something bad that has to be gotten rid of.

Cancer, for example, is something bad in the body. It's not a lack of something that causes problems, it is the problem. It is the ADDITION of something bad that causes the person to have issues. Therefore, one would like to see it cured or gotten rid of. If you could get rid of it (cure it), there's no more problems caused by it.

Autism/Asperger's, at least as I've understood Mili to explain it (and which makes the most sense to me) is it's not something that you have but something that you *don't* have. People might say that they 'have' autism/asperger's, but from my understanding is that what is actually going on is they *don't* have certain neurological communication within the brain, and that's what causes the problems, and that is what is referred to as ASD.

So if you think of a cure as getting rid of something, there's not really anything to get rid of (except all the problems brought on by the lack of neurological communication within the brain). If you try to just get rid of those problems by teaching the person with ASD how to act normal, it's just going to cause more frustration because the person has to learn it all and just robotically go through their lives. In the long run that's not curing (getting rid of) the problems that is suppressing them. And I can certainly see why someone would have a cure aversion if they were expected to learn to behave neurotypically without *being* NT.

If we could figure out a way to fill the gap (increase the neurological communication within the brain), that might go much farther than treating it like a disease that someone *has* that needs to be gotten rid of.

Mili, am I making any sense here?

Basically, you cannot get rid of (cure) something that's not there.

[milivica]

WOW!

Caps, bold, and big font to ya AspieG. Yes, I would agree with everything you said. You really really better get that The RDI Book. I think you're going to understand it very very well. I'm floored, you've really heard the core concepts of what I've said! (And what Peg has said much less verbosely - she's such a nonverbose show off)

[Nikabee]

OMGosh... you nailed it! I've been trying to describe it to others, but I couldn't come up with the right description. (I'm gonna steal that idea for use later, ok?) :D

I'm not fond of the word "cure" myself because it (to me) implies that there is something 'wrong.' I don't see anything 'wrong' about my son and I resent other people implying that. He is my son and I love him just as he is... as God made him. But if I can give him the tools or aids to make his life more comfortable, successful and happy - I want to do that. It won't change 'who he is' any more than giving my niece glasses to correct her eyesight will change 'who she is.' It just improves the quality of life.