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anbuend
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04 Apr 2010, 5:01 pm

Lots of people who can't walk either don't want a cure, are indifferent to a cure, or don't place cure particularly high on their priority lists. Everyone who has a medicalized condition that makes them bump up against the assumptions of the medical model has to confront this question at some point. It's not like autistics invented this concept. 

http://www.ushmm.org/museum/publicprogr ... notpopup=y

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JOHNSON: I have no interest at all in a cure for my disease. And there again the community is by no means monolithic. Christopher Reeve really and truly cared deeply about cure. He was sincere. Nobody was forcing him to do the work that he did. And that's legitimate. That came from his experience. But to me, my disability is -- I mean, it is part of my DNA. It's in every -- every -- would you say "molecule" of me? I don't know enough about the biology. But I mean, you know, at the tiniest level, the disability is part of who I am and, you know I really have no interest in changing that. It seems to me much more interesting to figure out what to do with this kind of body and this kind of life. Now when my mother got breast cancer, I was very glad that there were some good treatments for her. And maybe that doesn't make sense, but maybe it does. I don't know. Does that make sense?


That's a quote from Harriet McBryde Johnson on the topic of cure. She had a severe neuromuscular disease and used a powerchair to get around, and could not transfer herself out of it. And she really meant what she said and so do lots of other disabled people whether using wheelchairs or not. 

I want a cure for some things I have, I don't want a cure for others, and I'm indifferent to still others.  It's a very personal choice even though it's one that's often driven by various conceptions of disability. But which things I am which way about are not necessarily something someone with standard values about disability can guess. I don't really give a crap whether I walk or crawl or use a wheelchair or whatever. Bipedalism just doesn't hold some kind of magical sway over me that makes me prefer it.  Neither does speech. 

And even if I had things taken away from me that I do care about (and that's already happened) I can handle it. Because the main thing that matters to me can't be taken away by a condition even if my memory was wiped by a massive stroke and I died tomorrow.

So basically even if it's obvious to you that walking is automatically preferable, it's not obvious to lots of people who can't walk. Because the preferability of walking is a subjective matter, not an objective one.  


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Francis
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04 Apr 2010, 10:19 pm

There are certainly parts of AS that I'd like to be cured from.



-Joshua-
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05 Apr 2010, 1:34 am

Sometimes I feel that the cons of AS greatly outweigh the pros of it in regards to the bigger picture. It's true that "life is what you make of it", but I can't help but wonder how much different (or the same) I would be if I didn't have it. The endless number of questions and possibilities we have in life become unbearable to consider if I try to apply to much detail to them. For that reason I try to avoid asking myself this question and simply play cards with the hand I was dealt.

To give a direct answer though, if I was presented with two choices: NT or AS, I can't say it would be an easy decision.



BokeKaeru
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05 Apr 2010, 1:36 am

I will second the fact that not everyone with a physical handicap or other condition necessarily wants to be "cured," and that you can want to be rid of one condition but not others. I have Asperger's, a cleft lip, only 6 teeth, chronic ear infections, corneal scarring (which makes me very light sensitive) and regular stomach problems. I'd be glad to be rid of the latter three in a second. However, while the first three are things that most people are so stuck on "fixing" about me, for me they are just part of who I am. None of them are at all similar to having cancer - the major difference, of course, being that cancer is deadly, whereas these conditions are not. The major difference between the first three conditions I listed and the last three is that most of the problems caused by the latter are actually problems that inherently bother me, whereas the former three have caused me problems mostly due to societal stigma and prejudice. If ever there's an option, I'd much rather choose to fix society than to change who I am.

If a cure became available, I would want the decision to be left to autistic people ONLY on an individual basis. They're the people who will have to live with the outcome either way, after all. Also, I'd be worried that if a cure became available, it would be constructively mandated, because services and accommodations for autistic people would shrink to being nonexistent. After all, people would see no reason to accommodate others if there was a cure available. This is why I am unnerved by the very existence of a cure, and believe that, were one ever to be invented, autistic people on all parts of the spectrum should be heavily involved in pushing for regulation of its implementation and the effects thereof.

Also, I'm very unhappy with the mentality of some high-functioning people on the spectrum who would throw the low-functioning community under the bus when it comes to a cure. If we're saying that NTs have no right to decide what's "for our own good" with regards to cure, how can we concede the low-functioning population with any sort of consistency or integrity? This undermines the message of neurodiversity for everyone, regardless of (perceived) functioning level.



Woodpecker
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05 Apr 2010, 3:19 am

What is a cure ? I suspect the 'cure' would be to rid a person of all AS symptoms and make them think like a NT. If we consider the way that the UN (WHO) define perfect health "A state of perfect physical, mental and social wellbeing" then many of us if we flipped from being non-NT to NT would go further down the scale which exists between the perfect state of wellbeing and a state of total unwellbeing.

Whatsherhame wrote:
Becoming "Cured" will NOT solve all of your problems. You'll look people in the eye. You won't flap or rock. You won't bash your head against things. But you'll still be an unemployed, unhappy, uncharismatic goon living in your mother's basement. Doesn't anyone see that autism is so much more then these things?


Many people with autism who are employed use some autism related ability to earn a living. If they lost their autism they might be no longer able to earn a living. As a result their social wellbeing would be decreased if they were "cured".


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Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.


soaring
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05 Apr 2010, 5:05 am

I wold not want to be 'cured', but I can only speak for myself.
There are of course aspects of my personality that make life a lot more challenging and tiring and at times I think about how life would be without these aspects.
But I believe that all aspects of my personality are linked to each other and one would perhaps not be without the other. And I like the way I think, my ability to focus, my obsessions.....
I think that a certain social inability, sensory aspects... might be the price for what I call my gifts as well as facilitating them in some way.
I think that my strengths and weaknesses are leveling each other out to a significant degree.

Although I believe a 'cure' would make my life a lot easier I am absolutely unsure that I would be a happier person.
I don't want to live an 'easy' life, I want to live an interesting life, and that I certainly do, hard at times but sure it is an adventure! The way I percieve the world around me is very interesting to say the least, althoughit often is overwhelming (or overwhelmingly interesting?)
Furthermore I feel like I have a whole universe of thoughts within me where I can go and travel for hours ( although only on my own).
Happieness seems (my own oppinion, nothing more) to be detached from all circumstances. I have seen happy people living in what I for myself would call the most miserable circumstances, although I must admit that were rare cases. So I do not believe in happieness being dependant on anything else than the ability to be happy.

Still, the strongest point for me opposing to be 'cured' would be that I just love the way I think!



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05 Apr 2010, 5:30 am

Well, people want to be cured because they don't like having an ASD. Not everyone thinks it's some magical gift that has been bestowed upon them.
I myself don't want to be cured because it's kind of a scary concept having my whole brain structure completely change. Personally I don't think there ever will be a cure, not until brain translplants are invented anyway. I have nothing against people that do want a cure and that do want treatments, I honestly don't blame them. Like most people on here I don't like charities like Autism Speaks not because they want a cure but because of their scare-mongering methods and making parents of autistic children feel inadequate and ashamed, the fact that they want a cure doesn't bother me it's just the ways in which they chose to spread their message that does.


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French_Lola
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05 Apr 2010, 10:41 am

it's hardly anything magical... the problem I have with the idea of a 'cure' is that this society wants everybody to be the same, and a cure would just be another step towards that end. This society rejects you when you're gay, black, fat, etc. Would you "cure" someone of his "blackness"? I sure as hell know i wouldn't!
Who decides who's "normal" and who should be cured? Don't let this society ruin your life, we are not sick. Whoever can't accept me is welcome to get the heck out of my life.
I understand curing cancer: it hurts and kills. I can understand wanting to walk instead of being stuck in a wheel chair. But none of that has anything to do with ASD. What are we going to "cure" next? fat belly? hair on legs? and why not cure people who don't own a tv? Norms change all the time anyway.



HAL_9000
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05 Apr 2010, 10:53 am

French_Lola wrote:
I understand curing cancer: it hurts and kills. I can understand wanting to walk instead of being stuck in a wheel chair. But none of that has anything to do with ASD. What are we going to "cure" next? fat belly? hair on legs? and why not cure people who don't own a tv? Norms change all the time anyway.


Don't give the drug companies any more ideas...



French_Lola
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05 Apr 2010, 10:57 am

drugs companies & i don't get along that much...
just money makers benefiting from people's misery, and poisoning them at the same time, for them to keep needing drugs....



Dakow
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05 Apr 2010, 8:49 pm

I have just realized something. If Asperger's is to be cured, it must not be cured before birth. People must have a choice over whether or not they want it cured. If we were to completely eradicate Asperger's, the amount of amazing discoveries will diminish.

Example:

The internet, computers and electricity were invented by Aspies (At least, that's what some think). If Asperger's never existed, we wouldn't have a lot of the things we have now. Please don't flame me if I said something incorrect or stupid in this post.



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09 Apr 2010, 9:02 pm

jametto wrote:
Because it's a terrible disease that detaches you from reality making you a robot unable to correctly express your emotions.
Because of this people misunderstand you, you end up being all alone not being able to connect with anything emotionally besides on a superficial level.

So what we have left is a lonely individual with his autistic brain fog and zoning out issues. Not my idea of a good life.

Yeah... Autism is awesome.

All you guys do is say it's awesome and it would be boring to be normal? How would you know?

Can you state some positive examples that make autism a good thing for you? Instead of just saying it's good to be different and give no actual reason why it is?

It's insulting.


Most of us don't see all rainbows and unicorns balloons and lollypops when we consider our Autism, jametto, it just feels better to blow smoke up our own er. . :oops: .dresses about it.

None of us know what it is to be 'normal' no more than you know what that is. If we could feel like them enough to know the difference, we wouldn't be us, anyway. :chin:

So, depending on our tastes and predilections we learn ourselves and how we survived and even have joy. Joy is nice but it is ephemeral. :D and everyone on the earth today will be gone in 150 years anyway so what is the permanence of our existence . Being aware of just passing through this physical existence to others in another reality where I won't remember this life, either, looks good to me. I suppose if I only thought that life ended after this body is dead, I would be more stressed out about being born Autistic. However that is just my own way of coping.

your mileage may vary,

Merle


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09 Apr 2010, 9:43 pm

if people want themselves rid of it, good for them
if people dont want themselves to get rid of it good for them


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09 Apr 2010, 10:22 pm

anbuend wrote:
Lots of people who can't walk either don't want a cure, are indifferent to a cure, or don't place cure particularly high on their priority lists. Everyone who has a medicalized condition that makes them bump up against the assumptions of the medical model has to confront this question at some point. It's not like autistics invented this concept. 

That reminds me of Lost when John Locke tells his finance to not put hope in him walking again. She could be waiting around forever for him to walk and it may never happen. That one hit home to me.
The thing with the cure is it is still a way away. Why wait for something that may not even be possible in your lifetime?
Anyway, I even feel apprehensive about trying medications to make my own memory/concentration better because that will change a lot about me. I guess it depends on what I want more: live with these problems but still have my obsessions and talents or make it much easier to work and carry out simple household tasks and eventually become independent?


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09 Apr 2010, 10:47 pm

If the medication's effects are temporary, and you don't react badly to it, I would say it's probably safe to try. I know this because I take Concerta, and it doesn't change me any more than drinking coffee does (actually, the effect is very much like coffee without the jitters). But this is your choice, and if you can handle it relatively easily without meds, it's probably a better idea anyway.


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10 Apr 2010, 12:30 am

Callista wrote:
If the medication's effects are temporary, and you don't react badly to it, I would say it's probably safe to try. I know this because I take Concerta, and it doesn't change me any more than drinking coffee does (actually, the effect is very much like coffee without the jitters). But this is your choice, and if you can handle it relatively easily without meds, it's probably a better idea anyway.

I wouldn't consider meds if I didn't think I needed them, but I guess I'm unsure how much they would help and of side effects. I suppose I can only try.


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