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elan_i
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24 Jan 2008, 2:38 am

Possible reasons and explanations for the rejection of the idea of a cure.

(1) There is, and has never been, a treatment that significantly impacts our core symptoms of autism/Aspergers. (I consider this kind of treatment to be a "major treatment"; and for other treatments that do not impact the core symptoms of autism/Aspergers in a significant way, I'd consider them either "not treatments" or "anecdotal treatments" or "minimal treatments"

(Many with autism and many neurotypicals tend to focus on the issue of a cure for autism, and express differing views about this, though it would seem that one important step before this issue has relevance, and importance, is the issue of a major treatment, and, there has never been a major treatment).

Due to the lack of any treatment that significantly impacts our core symptoms, there has been no basis for many with autism and many neurotypicals to say anything (whether positive or negative) about the issue of a treatment or cure for autism. That is, in the absence of any experience of a treatment that impacts our core symptoms for the better, many find themselves left with the alternative to reject the idea of a major treatment and cure, and reject any efforts directed toward developing a major treatment or cure. The rejection is psychological. The idea of a major treatment and cure is rejected because there has never been any degree of one.

Many persons who have been imprisoned for most of their lives, such as 30-50 years, gradually become dependent on the prison walls, and have no need or interest in leaving, are frightened to do so, and will reject doing so. At first they hate the walls. Then they get used to them. Then they depend on them.

(2) All people with autism and Aspergers have never experienced anything different than autism and Aspergers, and as such, many find they do not have a sufficient basis to accept the idea of a major treatment or cure, nor efforts made in developing both. If, hypothetically, autism was acquired between 10 and 15 years old, then there would be a basis for all with autism and all neurotypicals to say they would like a treatment or cure that restored their prior level of functioning. In addition, since we have never experienced anything different, many with autism and many neurotypicals will reject the ideas of major treatment and cure as things that are aimed to not treat or cure, but rather, change the very nature of autistic people into something different than what they are. That is, they no nothing different than autism, and as such, will consider any treatment to be a threat to their very persons (identity, personality, self, mind, thought, emotion, beliefs, ideas, dreams, desires, goals, abilities, life style, etc).

(3) Lack of courage, and cowardice. Many autistic persons and many neurotypicals, due to some or all of the factors mentioned above, and likely other factors, have at the core a lack of courage to be open to possibility that a major treatment or cure would be beneficial for many or most with autism. Instead, many with autism and many neurotypicals fear the idea of a major treatment or cure, conceiving of them as things that will change their person hood so dramatically that they will cease to be who they once were. A consideration based on intense psychological cowardice and speculation. And a lack of courage to be open to other possibilities.

(4) Anti-social psychological aggression. Many with autism and many neurotypicals will move beyond the ideological rejection of the possibility of a major treatment or cure, to personally demeaning, threatening, mocking, and libeling people and organizations who are devoted to the possibility of autism treatment and/or cure. This conduct arises from the above discussed considerations, and likely others, and seems to be a further psychological step beyond the more passive ideological rejection.

(5) Depraved indifference. It seems reasonable to consider those who refuse to take part in the possibility of major treatment development as people who are engaging in depraved indifference about their own well being, or the well being of their children, etc. A distant speculation: Hypothetically, if a major treatment was developed, and it was rejected by many parents of autistic children on the various bases mentioned above, it would seem reasonable to consider the parents to be committing the crime of depraved indifference to human life. On the other hand, if hypothetically the major treatment caused, as many speculate out of psychological fear, autistic people to radically change in nature as people, to the extent that their former selves, personalities, identities, etc, were no longer present, then it would seem obvious that this major treatment would be rejected with good basis by medicine and those with autism and neurotypicals.

(6) Many speculate, out of pure fear, I'd argue, that any major treatment or cure for autism would, also, remove their personhood, personality, self, etc. This is one conception of a cure for autism, and one clearly psychological in nature, though commonly found in the autism community. Other conceptions: a cure will leave the core personality and self intact, but provide abilities that the autistic person is lacking, and yes this would involve differences in the person, but the person's core personality and self would remain. Analogous to a person with substantial physical limitations: a cure would provide increased physical capacities, and yes the person will no longer be only able to do tasks of nature A, but instead will be able to do tasks of nature B, where the A tasks include those of minimal physical function, and the B tasks include those of more extensive physical function. And yes the person may have no interest in doing the A tasks any longer since the person can now do the B tasks. Say the person has revolved her life around the A tasks for 30 years, and identifies with them very closely, and they are a central part of who she is. Well now the B tasks allow her, her SELF, to do more with who she is, rather than be limited.

Also like being blind from birth and for considerable time. The person knows nothing else and has learned to live with it very well. Upon being able to see, the person, at the core, remains the same, yet is now able to do more. In the absence of the current possibility of having her sight restored, would she object to any attempts to do so, or simply be open to hearing about any attempts and awaiting what there may be? If she does object, would it be because others have made her feel inferior that she is blind, or that she feels inferior herself regardless of what others have done? If she does object, maybe she also feels superior being blind, arguing that she experiences the world more directly as she is through her visual imagination, and touch, and hearing, and care of imagination, touch, and hearing. And that the visual world is over valued, and that those who try to cure her are imposing themselves on her, and that any efforts are a waste of money, and that there should be more blind people in the world with her unique auditory, tactile, and imaginative abilities. She'll argue that while she needs assistance, this is irrelevant to her above points.
And maybe upon being cured, she will dislike the cure, because she is shocked by the new ability and it disrupts everything she has known, and she is psychologically averse to it, and will not give it a chance through practice and therapy. Wouldn't this be psychological?



Last edited by elan_i on 26 Jan 2008, 3:42 pm, edited 7 times in total.

tweety_fan
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24 Jan 2008, 3:38 am

autism and aspergers is a part of whom people are and peoples don't like the idea of a treatment that turns them into someone else altogether. a treatment that helps with the negatives like social phobia and difficulties interacting and stuff like that makes sense. but the positives should not be lost, like the unique knowledge possessed by many autistics and the sense of loyalty that they have.



TheMandalore
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24 Jan 2008, 3:47 am

Quote:
Cowardice, fear, closed-mindedness, lack of experience, as basis for the rejection of the idea of a cure.



Cowardice? There is fear yes, because a "cure" would most DEFINITELY mean a change in who I am. To think that it wouldn't is very narrow thinking, the Aspie part of me is what influences most of my beliefs and decisions. Closed-mindedness? Just because I don't want to change ME because some people think I don't fit in well enough? No thanks. Lack of experience? Thats true, I suppose... I've never been an NT, and that might influence my decision, but I'd be a different person than I am if I had that experience.

Quote:
Many persons who have been imprisoned for most of their lives


IMPRISONED?! I've never felt imprisoned, I've been different than most, yes, but no one is the same anyway. I understand some people on the spectrum have had a more trying experience than mine, but the idea that there was something fundamentally wrong with me never even crossed my mind. I found out about aspergers when I was 18, had never considered myself at a disadvantage. When I found out some people did view it as a bad thing, it made me question if there WAS something wrong with me. And you know what? It didn't even take me a full second to laugh it off.

Weighing my advantages against my disadvantages in life, I think I'd come out the same, if not better than most people. And I think most aspies could say the same thing if they really thought about it.

Quote:
. Many with autism and many neurotypicals will move beyond the ideological rejection of the possibility of a major treatment or cure, to personally demeaning, threatening, mocking, and libeling people and organizations who are devoted to the possibility of autism treatment and/or cure.


Do you really think lashing out against something that is telling you that you are "inferior" or "defective" is odd? If they wanted to offer a way for aspies/auties to become an NT, so be it. But when they start calling it a "cure", theres going to be a problem. You can't fix what ain't broke.

Quote:
Hypothetically, if a major treatment was developed, and it was rejected by many parents of autistic children on the various bases mentioned above, it would seem reasonable to consider the parents to be committing the crime of depraved indifference to human life.


The most DISGUSTING statement of them all. You're saying that if a parent loves their child enough to not want to change them, that is a CRIME? Now I can't speak for the more autistic people out there, because like you said, I've never had that experience. But you're posting on a website for people with Aspergers, and I consider your post demeaning and insulting to me, my parents, and every other Aspie out there.


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24 Jan 2008, 5:13 am

This post raises many interesting questions.

  • Control of one's own body
  • Informed consent to medical treatment
  • Tolerance of social diversity
  • The right to freedom of expression
  • The science underlying psychiatry

Phrases such as "lack of courage, and cowardice" and "depraved indifference" are hardly going to contribute to productive discussion of these matters.

elan_i wrote:
personally demeaning, threatening, mocking, and libeling people and organizations

Certain forms of expression are protected in law. If someone's rights have been abrogated, surely that is for the courts to decide.



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24 Jan 2008, 5:42 am

Mandalore, I understand your reaction to "imprisonment" - but actually it's not wrong. The key is who is imprisoned - and more importantly by whom. We aren't imprisoned ourselves (as you rightly say), but we can be imprisoned by others who seek to treat up like lephers or some such undesirables. I think that's what the OP was getting at.



lelia
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24 Jan 2008, 7:42 am

I think you had some interesting points, but I think you might have phrased them in less insulting terms. Also, one needs to make distinctions between that which is merely different, and that which is crippling. I think I'm fine though I would like less physical discomfort, but one of my daughters is thoroughly crippled mentally and socially. For her I would like a cure on all levels, but until such becomes available, I would like people to love her as she is. She has a happy life now, but it does require much expensive societal support beyond the expensive societal support all human beings need.



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25 Jan 2008, 4:48 am

I'd like to add in to this discussion that the points raised aren't hitting far from the mark.

If you experienced, and really lived like an NT, you'd probably be with the ones who advocate [i]for[i/] a cure. No one with AS ever experiences what the Neurotypicals experience, what they are like in their minds, because we're different. We can't say for sure that being an NT is as horrible as peope think, or that it would kill us and replace us with someone normal. I think that's paranoia and ignorance, complete balderdash.

If they did make a cure, I'd test it. If I died, I'd die. If I didn't, I wouldn't die. Simple. But I know that until I either died or lived, we would not know whether or not it would be so. I'd rather be an altruist than a facist, a valuable corpse to a worthless coward. But I don't believe that I'll die. In fact, I'd take out a bet that I'd live, and if I lived, I'd make a fair bit of cash, though if I died, I'm sure I wouldn't give a whit about money.

So much has been expressed by people in this thread;

http://www.wrongplanet.net/postt53916.html

On wanting to make all the NTs autistic.

So why is it so right for us to discuss making people, against their will, into autistics, yet be so driven and fanatical against a cure that doesn't even exist? And would autism not destroy who they are? It's an incredible hypocrisy, in my opinion. Becoming like them will kill who we are, no? But then why do you think to do the same to them? Would that not make you the killers you accuse NTs of?

There is no cure.
There is no way to give someone autism.

NTs want to make Autistics not the way they are.
Autistics want to make NTs not the way they are.

How are we any better? How can we justify what we are so dead set against?
We can't. It's hypocritical to put our welfare above their welfare, to call them bigots while mirroring the actions that make us call them bigots in the first place.

I know Aspies who're bigots, completely amoral, using whatever means neccesary to spread "the truth" about Autism. Some call parents nazis, murderers, child-abusers, and worse. Some treat those with severe autism as nuisances, unintelligent, and that they make the Spectrum look bad. Some fight a cure in the name of the spectrum, when they really fight in the name of just one part of it, AS, and compare themselves, adults with AS, against children who have severe autism, and tell them all about the joys of Autism, the joys they have, when they have nowhere near the kinds of problems facing these children.

After long years, I've reached a point where I don't stim except under extreme stress, or unless I let myself. I no longer rock, except when I have a meltdown(which was just a couple of months ago, sadly, I had been doing so well, more than two years). I am, for lack of a better term, better. I've confronted challenges, confronted my AS, and I've come out more capable than I was before. Do I need a cure? No. Do I want a cure? I don't really care. Would I take a cure? To prove to either side what the cure would do, sure. Death of who I am, or not, not too big a price to pay in order to reassure one side, or show the danger of such a cure. Either way, it will be a good thing I do.

Lelia, I understand where you're coming from, and my opinion mirrors yours, I think. I'd like nothing more than a cure for your daughter's problems, but she is a person, a human being like any other, and deserves the same respect as any other person. I don't know her, but then, I don't know a lot of people, and I still believe that everyone deserves that respect, to be accepted for who they are. She needs what she needs, and deserves what she needs.


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SleepyDragon
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25 Jan 2008, 5:54 am

I self-identified, and was later diagnosed, as a person with AS after I turned fifty. Believe me, I did my damndest to be the best little neurotypical I could be for a full half-century, and it was no Sunday-school picnic, I can tell you. Don't anybody EVER DARE!! ! to presume to lecture me about whether I lack courage or not.

It's lucky I still have a sense of humour. :)



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25 Jan 2008, 6:23 am

I'm sitting here in a sedated stupor wondering when the fudge they'll make some drug that dampens sensory overload/environmental sensitivity without knocking the individual out; I swear, this will take away many of the really, really negative symptoms of autism (apart from executive dysfunction).

Then we'll all be quirky and eccentric like the "lucky" ones.



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25 Jan 2008, 6:36 am

SleepyDragon wrote:
I self-identified, and was later diagnosed, as a person with AS after I turned fifty. Believe me, I did my damndest to be the best little neurotypical I could be for a full half-century, and it was no Sunday-school picnic, I can tell you. Don't anybody EVER DARE!! ! to presume to lecture me about whether I lack courage or not.

It's lucky I still have a sense of humour. :)



yup, sleeps,

[apart from more doubt as to actual as][[...]]
[just entering/ed dianostic process] [[tragically amusing]]

insert:
[unconsciously][without understanding why not successfully]
& [[does that explain why so tired&cold]],
"I did my damndest to be the best little neurotypical I could be"


100%, in same somanyorevenless words; full- :heart: edly

& add one: it took the same time to discover PRIDE





btw:
self-identified is excellently put [said grumps condascendingly]

ps: insert is a nice person in my book
MIND THE GAP / INSERT THE COMMA
[no, doesn't work]
mind the gap / insert the comma
[better...]


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25 Jan 2008, 6:46 am

OK, andhow many NT people are willing to have a pair of bionic eyes or ears installed?

Maybe there IS some cowardice, but it is INFORMED cowardice! That is called INTELLIGENCE, RISK AVERSION based on REWARD/RISK ratio, etc....

I ALSO won't jump off a cliff to see I can fly! Give me a pair of wings that can glide on flat ground, and MAYBE I'll try!

Frankly though, my hyper sensitivities aren't THAT hyper. EVERYONE should head them! If they did, people would be more polite, things would get done faster, there would be fewer diseases, etc....

My mental problems are easily hidden, and compensated for by areas where I LACK problems others have!

My physical problems are easily hidden, rarely needed, and compensated for by mental strengths.

So WHY should I undergo treatment to maybe lose what I have to gain basically just a social improvement?

AGAIN, reward/risk!

Joeker,

Your name is APPROPRIATE, I'll give you THAT!



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25 Jan 2008, 8:12 am

My computer's hard drive is a mess right now.
Run away from the cure? topic

I need a cure for my computer's problems more than I need a cure for what "ails" me.

People living on the Autism Spectrum are not broken. Cures are not heroic, they have no meaning. :roll:

Interesting post, if only to remeind us of who we are. :)


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25 Jan 2008, 11:08 am

I'm not opposed to the idea of a cure. I'm opposed to the idea that everything about me is somehow broken and that my life is made up of endless suffering. Both of these things are untrue.


Quote:
Many persons who have been imprisoned for most of their lives, such as 30-50 years, gradually become dependent on the prison walls, and have no need or interest in leaving, are frightened to do so, and will reject doing so. At first they hate the walls. Then they get used to them. Then they depend on them.


I am not imprisoned by my AS. I see the analogy that you are trying to make, but in my case it does not work.
My depressive and anxious tendencies imprison me far more. I'd give them up in a heartbeat.




Quote:
(2) All people with autism and Aspergers have never experienced anything different than autism and Aspergers, and as such, many find they do not have a sufficient basis to accept the idea of a major treatment or cure, nor efforts made in developing both. If, hypothetically, autism was acquired between 10 and 15 years old, then there would be a basis for all with autism and all neurotypicals to say they would like a treatment or cure that restored their prior level of functioning. In addition, since we have never experienced anything different, many with autism and many neurotypicals will reject the ideas of major treatment and cure as things that are aimed to not treat or cure, but rather, change the very nature of autistic people into something different than what they are. That is, they no nothing different than autism, and as such, will consider any treatment to be a threat to their very persons (identity, personality, self, mind, thought, emotion, beliefs, ideas, dreams, desires, goals, abilities, life style, etc).


Good point, but one could also use this argument to advocate a cure for NT-ness.
Having been Aspie all my life has shaped the way my mind works, the way I see life and all of that long list of things you mention above. I'm at a point where, for the most part, I like how "I" operate, and I've learned (well, mostly) how to work around those parts of "I" that I dislike. Why would I want to change that?

Quote:
3) Lack of courage, and cowardice. Many autistic persons and many neurotypicals, due to some or all of the factors mentioned above, and likely other factors, have at the core a lack of courage to be open to possibility that a major treatment or cure would be beneficial for many or most with autism. Instead, many with autism and many neurotypicals fear the idea of a major treatment or cure, conceiving of them as things that will change their person hood so dramatically that they will cease to be who they once were. A consideration based on intense psychological cowardice and speculation. And a lack of courage to be open to other possibilities.


See my above paragraph.
If I could somehow try a cure for a period of time, I'd do it out of curiosity. If I liked it, I'd keep it.



Quote:
(4) Anti-social psychological aggression. Many with autism and many neurotypicals will move beyond the ideological rejection of the possibility of a major treatment or cure, to personally demeaning, threatening, mocking, and libeling people and organizations who are devoted to the possibility of autism treatment and/or cure. This conduct arises from the above discussed considerations, and likely others, and seems to be a further psychological step beyond the more passive ideological rejection.


No, we are opposed to the ideas that
1. Everyone like us is a horrible burden.
2. It's ok to kill people like us, the only reason not to is because it might hurt another "normal" person.
3. Such organisations are allowed to foist their ideas on us, but if we speak up, they don't have to listen because we are just stupid, broken non-persons.
4. We are somehow not real people.

These, and other views that are just as sickening, are ones that I have seen expressed by many pro-cure organisations. From this, I conclude that the people who write their websites/other sources of information must hate people like me. Why would I align myself with people who hate me?


Quote:
(5) Depraved indifference. It seems reasonable to consider those who refuse to take part in the possibility of major treatment development as people who are engaging in depraved indifference about their own well being, or the well being of their children, etc. A distant speculation: Hypothetically, if a major treatment was developed, and it was rejected by many parents of autistic children on the various bases mentioned above, it would seem reasonable to consider the parents to be committing the crime of depraved indifference to human life. On the other hand, if hypothetically the major treatment caused, as many speculate out of psychological fear, autistic people to radically change in nature as people, to the extent that their former selves, personalities, identities, etc, were no longer present, then it would seem obvious that this major treatment would be rejected with good basis by medicine and those with autism and neurotypicals.


It's not "psychological fear". Autism is wired into the brain, from what I've read it seems it affects numerous areas of the brain, OF COURSE it affects your whole self. Suggesting that a cautious attitude toward a cure is cowardice because "it might not change you" is as ridiculous as suggesting that an NT take permanently mind-altering drugs, then ridiculing them as a coward when they hesitate. There is a difference between cowardice and caution.


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25 Jan 2008, 11:11 am

Joeker wrote:

If you experienced, and really lived like an NT, you'd probably be with the ones who advocate [i]for[i/] a cure.


Why do you say this?


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25 Jan 2008, 11:42 am

If someone is happy with who they are, and isn't hurting anyone, why change them? I don't like the idea of NTing the world, that's narrow-minded and in a frankness showing a great deal of discrimination. Take a look around, the people here vary, some want to be an NT, others don't, and for those who don't, that's their choice and we should respect that completely. For those who do, by all means, find a cure and make them happy. ((though I'm not sure how happy they'd be...)) For those too far down to know the difference, I'd let them have it.

However, the idea of everyone being made neurotypical scares me. First it'll start like that, and then what? Being shy in general is gone, and then being a little awkward, we'd end up in a real life version of A Brave New World

Letpeople be themselfs, that's the only feedom we ever truely have.