Another point of view that anti-cure "Aspies" must

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The_Face_of_Boo
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10 Jul 2010, 4:29 pm

...consider before talking as spokespersons for all autistics.

http://www.wellsphere.com/autism-autism ... der/146553

I agree with this father, you , the super high functioning Aspies , or the very very mild (I wonder how mild can be before reaching NTism?) "autistics" don't have the right to talk in the name of all autistics.



Willard
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10 Jul 2010, 4:50 pm

Its been suggested recently by professionals in the field that the problems that cause some to be low functioning may be a condition separate from the Autism itself. Since many of us have the Autism, but not the low functionality, perhaps the curebies are looking for their miracle in the wrong place.

There may be no 'spectrum' at all, but a form of cognitive retardation only occasionally comorbid with Autism.

Still, its a moot point. If Autism is genetic, then the brain forms in the fetus with a slight deviation from the norm. Once that gray matter is a functioning organ, how exactly are you going to reroute those neural pathways in order to align them with the Neurotypical template? You can't crack the skull open and fix the brain with parts from Radio Shack. You may alter behaviors somewhat with drugs, but that's not a cure and likely to create more side effect problems than it eliminates.

And, if the causes of Autism are genetic, but not caused by the same genetic modifications in every case (as has been suggested), then what sort of 'gene therapy' could be consistently effective?

I think the people anxiously awaiting a magic bullet cure are in for a long wait and a big disappointment. At this point, a cure for Autism is Science Fiction and will remain so as long as the precise causes remain a mystery.

Oh, and BTW, there is no such thing as 'mild Autism' - there are simply different levels of functional ability to cope with it.



Last edited by Willard on 10 Jul 2010, 4:54 pm, edited 1 time in total.

The_Face_of_Boo
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10 Jul 2010, 4:54 pm

Quote:
I think the people anxiously awaiting a magic bullet cure are in for a long wait and a big disappointment. At this point, a cure for Autism is Science Fiction and will remain so as long as the precise causes remain a mystery.


But that wasn't exactly the point of the thread, Willard.



princesseli
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10 Jul 2010, 4:58 pm

I know a lot of people on here are anti-cure but theres nothing wrong with there being a cure available for those whon actually want it. If your autistic and (any level of functioning) and you dont want to be cured then thats good. As long as people arent forcing a cure on you. I agree with that article as in Alex Plank does not speak for all aspies. But technically the parents wanting a cure for there low functioning autistic child cant speak for them either. How do you know your child wants to be cured? It can be really difficult to pinpoint.



SoSayWeAll
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10 Jul 2010, 4:58 pm

I also suspect that some people conflate "cure" with "coping skills."

"Random" comment: remember that doctor I posted about, who ticked me off with his (similar) attitude that because I sought him out and called him that I could not even possibly be on the spectrum? I may not be, but for frak's sake, please determine that based on evidence and not 2 seconds into a phone consult. Well, he also went on at great length about how if it's the ADHD that is at the root of my difficulties that I would need meds to be "cured." Excuse YOU, I'm an adult, and if I don't want to go that route, I don't think I'm defective.

So I very much understand that, and dislike some of the things this woman said, for that reason. First, success does not contradict diagnosis. Second, having a diagnosis does not make you defective.

Learning coping skills is something that I think is a good thing, but I think should be done with appreciation of who a person is. And I will also say medication DOES have a legitimate place for some people even though I say it has no legitimate place in MY life.

So on one side I think there may be a fallacy of conflating "cure" and "coping skills," and on the other side a thought that "diagnosis" means "defective." No wonder it's so hard to reach a common understanding.


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Willard
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10 Jul 2010, 5:01 pm

I saw your point - that one Autistic has no right to discuss the handicap as though they understand it, because we may not have it as bad as someone with LFA.

My point is, yes, we do have that right. The fact that we don't have the intellectual handicap they have doesn't mean our Autism isn't as bad. As I've said many times before, usually to those who don't want to hear it: If you think your Autism is 'mild' either you don't yet realize how completely its affecting you, or you have some condition other than Autism. 'Mild' is an illusion created by effective coping mechanisms.



Apple_in_my_Eye
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10 Jul 2010, 5:05 pm

Some of the people mentioned in that article are Jim Sinclair and Amanda Baggs. IIRC, Jim Sinclair didn't speak until age 12. And I don't think Amanda Baggs fits the stereotypical image of "super high functioning Aspie" that the author is trying to paint, either.

And the argument seems to be "'high functioning' people shouldn't speak for the 'low functioning' people because only parents and 'experts' should be allowed to do that." (i.e. Dr. Lovaas, and perhaps Dr. M. Israel too...)



mechanicalgirl39
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10 Jul 2010, 5:24 pm

Not all anti-cure people are high functioning, or mildly affected.


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10 Jul 2010, 5:28 pm

SoSayWeAll wrote:
I also suspect that some people conflate "cure" with "coping skills."

.


I think that's very common, especially among NT parents of autistic children. I should know because that's where I was when I came to WP a year ago. When I saw people making "let the kids be" anti-cure posts, I thought that I was reading arguments against the occupational therapy, physical therapy and related therapies that my daughter was getting and still gets that teach these skills. I couldn't understand why somebody would want my daughter to not get speech therapy when speech therapy was what made her able to communicate with people. And communication is so important.

A year later I have "cure" disentangled from "coping skills" but it was about 6 months in here before I got that sorted out in my head. This giant misunderstanding based on conflating "cure" and "coping skills" is, I think, a large part of what fuels what often feels like a war between NT parents of autistic children and autistic adults.



mechanicalgirl39
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10 Jul 2010, 5:32 pm

Janissy wrote:
SoSayWeAll wrote:
I also suspect that some people conflate "cure" with "coping skills."

.


I think that's very common, especially among NT parents of autistic children. I should know because that's where I was when I came to WP a year ago. When I saw people making "let the kids be" anti-cure posts, I thought that I was reading arguments against the occupational therapy, physical therapy and related therapies that my daughter was getting and still gets that teach these skills. I couldn't understand why somebody would want my daughter to not get speech therapy when speech therapy was what made her able to communicate with people. And communication is so important.

A year later I have "cure" disentangled from "coping skills" but it was about 6 months in here before I got that sorted out in my head. This giant misunderstanding based on conflating "cure" and "coping skills" is, I think, a large part of what fuels what often feels like a war between NT parents of autistic children and autistic adults.


Good post.

Cure = cutting out the cat's marble eyes and forcing her to be a dog.

Coping skills = letting her keep her feline self, but teaching her to be a pack hunter too.


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TeaEarlGreyHot
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10 Jul 2010, 5:40 pm

I don't think anyone has the right to speak FOR anyone else. Autistic or not.


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buryuntime
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10 Jul 2010, 5:43 pm

I think people with the disorder have more right to speak for it than the parents, who are notorious for doing silly things like depriving their children of vaccines.

EDIT: With that said I wouldn't mind a cure. <_<



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10 Jul 2010, 5:51 pm

Willard wrote:

Oh, and BTW, there is no such thing as 'mild Autism' - there are simply different levels of functional ability to cope with it.


I didn't know that either.

That is a very helpful statement for me.

Having progressed so well, I would love to become NT because I am too far advanced for it not to hurt any more and not yet NT enough for it not to affect me. Ouch.

I don't want anyone talking for me unless they have consulted me in person and know exactly what my point of view is because each aspie is different.



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10 Jul 2010, 5:55 pm

mechanicalgirl39 wrote:
Not all anti-cure people are high functioning, or mildly affected.


Yeah...take it from me. I'm one of the most affected aspies here, and I don't want a cure. I can cope, quite well. I'm working. I have a job. I bring money into the economy.


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Chronos
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10 Jul 2010, 6:00 pm

The_Face_of_Boo wrote:
...consider before talking as spokespersons for all autistics.

http://www.wellsphere.com/autism-autism ... der/146553

I agree with this father, you , the super high functioning Aspies , or the very very mild (I wonder how mild can be before reaching NTism?) "autistics" don't have the right to talk in the name of all autistics.


I have know other individuals with AS, individuals with moderate to high functioning autism, and individuals with PPD-NOS.

All are different. All have different stengths, weaknesses, and perceptions of who they are.

There are individuals who are severely affected and have very limited, if any communication with the world around them, cannot care for themselves, and have profound developmental delays. I do not see anything wrong with searching for a cure or treatment which will better their lives and the lives of those who have to care for them.

There are individuals with less pervasive issues, such as many of those adults with HFA/AS who wish to be able to interact with individuals and form relationships in a more NT fashion, and I have no objection to them seeking treatment or help for that.


However I do have some objections to some perceptions held by parents on what needs to be treated and what doesn't. This centers on very NT parents who are very distressed by their child's personality simply because the child does not "act normal". These are the people who get stressed because their child wants to wear certain clothes, because their child doesn't play with toys the way the parent thinks the toys were meant to be played with, because the child is absolutely fixated with Big Bird and is 10 years old.

The ones who complain "I don't know what to do with little Tommy! He will only wear Sponge Bob shirts!" Like it's some crisis or something.

These people are just think are harassing their children and should be ashamed of themselves for not accepting their childrens' personality.



mechanicalgirl39
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10 Jul 2010, 6:29 pm

Chronos wrote:
The_Face_of_Boo wrote:
...consider before talking as spokespersons for all autistics.

http://www.wellsphere.com/autism-autism ... der/146553

I agree with this father, you , the super high functioning Aspies , or the very very mild (I wonder how mild can be before reaching NTism?) "autistics" don't have the right to talk in the name of all autistics.


I have know other individuals with AS, individuals with moderate to high functioning autism, and individuals with PPD-NOS.

All are different. All have different stengths, weaknesses, and perceptions of who they are.

There are individuals who are severely affected and have very limited, if any communication with the world around them, cannot care for themselves, and have profound developmental delays. I do not see anything wrong with searching for a cure or treatment which will better their lives and the lives of those who have to care for them.

There are individuals with less pervasive issues, such as many of those adults with HFA/AS who wish to be able to interact with individuals and form relationships in a more NT fashion, and I have no objection to them seeking treatment or help for that.


However I do have some objections to some perceptions held by parents on what needs to be treated and what doesn't. This centers on very NT parents who are very distressed by their child's personality simply because the child does not "act normal". These are the people who get stressed because their child wants to wear certain clothes, because their child doesn't play with toys the way the parent thinks the toys were meant to be played with, because the child is absolutely fixated with Big Bird and is 10 years old.

The ones who complain "I don't know what to do with little Tommy! He will only wear Sponge Bob shirts!" Like it's some crisis or something.

These people are just think are harassing their children and should be ashamed of themselves for not accepting their childrens' personality.


Agreed it's their fault they are stressed. Let them get a sense of proportion.


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