Why are people here so against a cure for those who need it?

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DVCal
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07 Apr 2013, 3:12 pm

McAnulty wrote:
Who are you to judge what thoughts are important or not? IQ doesn't determine someone's worth, value, or right to exist.


Noo, I wasn't saying they don't have a right to live, all of them have a right to live. I just want those on the lower end to have a better life.



CaptainTrips222
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07 Apr 2013, 3:18 pm

johnrobison wrote:
The majority of people with autism are able to live independent lives as adults


Maybe if they collect disability, or have somebody advocating for them so they don't get terminated constantly.



DVCal
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07 Apr 2013, 3:20 pm

I wasn't aware most or even a 1/3 of those on spectrum live as independent adults, even with help.

I always was under the impression most were stuck in their own mind unable to do the most simple thing. Perhaps this thinking is wrong.



McAnulty
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07 Apr 2013, 3:21 pm

Okay, but IQ isn't always correlated with happiness. I've read research that people on the spectrum with higher IQ's are often more depressed than those with low IQ's, because they're more aware and concerned with how they're different.
I think when it comes to cure talk, most people who are higher functioning don't want to feel that they need to be fixed. They want to be accepted for who they are, which they have every right to be. I think they're thinking of their situation, which is very different from a person who eats their own feces.
I've seen many people with very low IQ's who are happier than people tend to assume they must be.



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07 Apr 2013, 3:21 pm

DVCal wrote:
So many people on the spectrum suffer terribly, they have no ability to communicate. Many of them lack any meaningful cognitive function, they just sit around making noises, rocking, playing with their hands, just existing, not actually living. How can you oppose a cure that would help these people.


How do you know these people lack any meaningful cognitive function? Many who do learn to communicate make it clear that they do in fact have meaningful cognitive function. They have thoughts, feelings, opinions, convictions, hopes, dreams, just like everyone else. Just because you do not see them communicating these things does not mean they do not exist.

I'm not even saying anything for or against a cure, but wondering how you can make such proclamations about people?

Quoting IQ scores is irrelevant. If you have someone who cannot communicate in a relatively typical fashion, they're not going to score high on an IQ test because of their receptive and expressive communication impairments. Odds are the rates of actual intellectual impairment among autistics is exaggerated because of this.



DVCal
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07 Apr 2013, 3:28 pm

Verdandi wrote:
DVCal wrote:
So many people on the spectrum suffer terribly, they have no ability to communicate. Many of them lack any meaningful cognitive function, they just sit around making noises, rocking, playing with their hands, just existing, not actually living. How can you oppose a cure that would help these people.


How do you know these people lack any meaningful cognitive function? Many who do learn to communicate make it clear that they do in fact have meaningful cognitive function. They have thoughts, feelings, opinions, convictions, hopes, dreams, just like everyone else. Just because you do not see them communicating these things does not mean they do not exist.

I'm not even saying anything for or against a cure, but wondering how you can make such proclamations about people?

Quoting IQ scores is irrelevant. If you have someone who cannot communicate in a relatively typical fashion, they're not going to score high on an IQ test because of their receptive and expressive communication impairments. Odds are the rates of actual intellectual impairment among autistics is exaggerated because of this.


It is my impression if that someone with meaningful cognitive function wouldn't sit around all day rocking, flapping hands, making noises, and what not. Maybe I am wrong, and maybe they do have meaningful cognitive function.



Verdandi
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07 Apr 2013, 3:30 pm

DVCal wrote:
It is my impression if that someone with meaningful cognitive function wouldn't sit around all day rocking, flapping hands, making noises, and what not. Maybe I am wrong, and maybe they do have meaningful cognitive function.


Yes, you are wrong.

Here's an example of someone who was assumed to lack meaningful cognitive function, who defied expectations once she was able to communicate:

[youtube]http://www.youtube.com/watch?v=vNZVV4Ciccg[/youtube]



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07 Apr 2013, 3:32 pm

Valkyrie2012 wrote:
DVCal wrote:
The_Walrus wrote:
DVCal wrote:
androbot2084 wrote:
Yes geniuses need a cure.


Most people on the spectrum are not geniuses, most pee and sh** everywhere, and play with their own feces.

Isn't intelligence on the autistic spectrum distributed using the same bell curve as for NTs?

I have met people from all over the spectrum, and none played with their faeces.

I think some people are opposed to a cure because they are afraid they would be forced, either physically or by other means such as the withdrawal of support, to take the cure.


No it isn't, most on the spectrum have very little cognitive function, and have very low IQ. I am talking 20 to 30 IQ points total. Sad really.


Sorry - but I think you are doing a black and white thinking number in this thread. No matter what anyone says you are going to come back pushing only your view.

I am on the spectrum and I have a very low IQ (that equal to an ape!) - I have never, will never play with my own feces. I am considered high functioning even with said low IQ. Yes, people on the other end of the spectrum have been known to do this. There are reasons for it - but I won't go into that. If they do not have the ability to function at a level that they know they have issues.. who is that cure for? Them or the people who give them the life time of care and support and clean up? Maybe in their world they are not smearing feces but creating art with an organic substance they created? How are you to know what they are doing? They can't tell you.

So again - who is the cure for? In my eyes - not for me but for those around me. I say no thanks. I accept me just as I am - warts and all.

Very low IQ? Some people are just very bad at taking tests, even IQ tests, but are obviously very intelligent irl.



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07 Apr 2013, 3:41 pm

Some people wrap up their identity in Asperger's. The idea of a cure threatens them.

It's completely understandable. I don't think there's much to worry about. I think the way the DSM is supposed to work is that it's very subjective in terms of functioning. You could be aspie as hell and not qualify for a diagnosis simply because it does not impair your ability to live your life as you want to live it. Perhaps, if things like a cure become more of a reality, it will be more important to emphasize this aspect of PDD's.

If it's good for you, why cure it? Nobody is going to force this to happen. If it's bad for you, you can cure it. But I think even a so-called "cure" would change much less about a person than most people think.

I am a Narcissist, so I have to be cured.



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07 Apr 2013, 3:44 pm

I don't think a "cure" is possible. Treatment for certain symptoms and accommodation for disabilities, yes. A cure? No.

In which case, looking for a cure is wasting money that could actually be used to help autistic people.



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07 Apr 2013, 3:46 pm

Tyri0n wrote:
If it's good for you, why cure it? Nobody is going to force this to happen. If it's bad for you, you can cure it. But I think even a so-called "cure" would change much less about a person than most people think.


I do not want a cure and I do not wrap up any part of my identity in "Asperger's." If anything, I think it is the wrong diagnosis and do not identify with the terminology.

I think the reasons are more nuanced than just feeling like one's identity is threatened. Being autistic impacts how one thinks and perceives and possibly on a rather fundamental level. If you take me and remove the autism, then I am going to be quite different. I do like who I am, and I do not see why I should become another person with different thoughts and perceptions to meet someone else's definition of "healthy."



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07 Apr 2013, 4:01 pm

DVCal wrote:

It is my impression if that someone with meaningful cognitive function wouldn't sit around all day rocking, flapping hands, making noises, and what not. Maybe I am wrong, and maybe they do have meaningful cognitive function.


I think it is good that you asked this question because it has allowed you an opportunity to expand your perceptions. A lot of people have uninformed perceptions. The wise thing is to remain open to the possibility of changing your thinking if you encounter ideas or evidence that are contrary to your current beliefs.

What I find...dangerous...about the assumption that people with lower functioning autism need "curing" is that it is only that...an assumption. Once when I was younger, I volunteered to go to a basketball tournament with kids who played wheelchair basketball. I was to be the assistant to one of the young girls. I had the most awesome time and was really impressed with the kids (they were high schoolers and I was 19, so the age difference wasn't that great). At one point, I must have been staring at one of the guys with a sad look on my face. He told me not to feel bad for him. That he had no idea what it was like to walk, run, or jump, and that he was 100% happy the way he was. He said that he actually thought he was probably happier than most of his friends who could walk. It made me realize how judgmental I was being. I assumed that being able to walk was better than not being able to walk in a way that made the quality of my life better than his. My face actually turns red as I type this because I can't believe I ever held that ignorant of a belief. Who was I to judge his happiness and quality of life based on my own yard stick? That is as backwards as automatically assuming my life is better because I am white or live in America. Says who?


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07 Apr 2013, 4:04 pm

Valkyrie2012 wrote:
So again - who is the cure for? In my eyes - not for me but for those around me. I say no thanks. I accept me just as I am - warts and all.


This is a really important statement here.



Tyri0n
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07 Apr 2013, 4:05 pm

Verdandi wrote:
Tyri0n wrote:
If it's good for you, why cure it? Nobody is going to force this to happen. If it's bad for you, you can cure it. But I think even a so-called "cure" would change much less about a person than most people think.


I do not want a cure and I do not wrap up any part of my identity in "Asperger's." If anything, I think it is the wrong diagnosis and do not identify with the terminology.

I think the reasons are more nuanced than just feeling like one's identity is threatened. Being autistic impacts how one thinks and perceives and possibly on a rather fundamental level. If you take me and remove the autism, then I am going to be quite different. I do like who I am, and I do not see why I should become another person with different thoughts and perceptions to meet someone else's definition of "healthy."


I don't think Einstein needed a cure. Nor do many other autistic people. I don't think a cure in the sense that we usually understand it is even possible.

I do think, however, that stem cell treatment could improve executive functioning/cognitive functioning and communication skills, as well as anxiety/depression. That's about all it would change, particularly in adulthood. I don't think it would change anything about you, really. So it wouldn't be a cure in the traditional sense.



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07 Apr 2013, 4:25 pm

InThisTogether wrote:
Many people feel that you cannot parcel out who they are from autism. To "cure" their autism would make who they are cease to exist.

I am not convinced that many people with autism can be "cured" because I do not think they are diseased or ill. I do think that some underlying causes of some forms of what we lump together and call autism can be remedied to some extent. But not all.

My biggest concern/fear that is at least somewhat related to this is identifying genetic markers that could be tested for in utero. The thought that some mother somewhere would abort a child like one of mine fills my heart with despair. My kids are awesome kids and awesome human beings. It would have been a grave error to not allow them life because they are wired differently.

If the mother doesn't think she's capable of raising an autistic child and as a result is prepared to go through an abortion (which is a horrible process), then let her. Being autistic is hard enough with good parents. I used to agree with you, but I'm generally in favour of abortion, so why not be in favour of aborting autistic foetuses?

I like your latest post a lot. I have a friend who is autistic, fairly high functioning but unintelligent. People might think I'm odd when they meet me, but he is obviously disabled. He runs around when everyone else is walking, threatens to feed people to sharks, that sort of thing. For a lot of people he is probably the most disabled non-Downs person they have met. He manages to go to school and achieve reasonable results (on specially designed course, I might add), he can dress, wash and feed himself, he has some understanding of money management, he can hold a conversation (at least by my standards, though it should be said NTs often struggle to communicate with him). You could "cure" him, remove his autism and make him intelligent, but then he'd probably be a lot less happy.

I also know some people who are lower functioning still. The lowest functioning Aspie I know can dress himself and can feed himself with some encouragement, but he struggles to communicate, has extremely repetitive behaviours, and easily experiences sensory overload. The case for "curing" him is initially extremely compelling. Certainly I think curing his sensory issues would be a very good thing. Additionally, I think he understands nearly everything said to him, but he struggles to use more than two consecutive words, so can't explain why he is distressed or what he needs- again, that would be a good thing to "cure". Whether he would then request a cure for his other autistic symptoms, I don't know, but it is dangerous to assume that he would.



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07 Apr 2013, 4:34 pm

The_Walrus wrote:
InThisTogether wrote:
Many people feel that you cannot parcel out who they are from autism. To "cure" their autism would make who they are cease to exist.

I am not convinced that many people with autism can be "cured" because I do not think they are diseased or ill. I do think that some underlying causes of some forms of what we lump together and call autism can be remedied to some extent. But not all.

My biggest concern/fear that is at least somewhat related to this is identifying genetic markers that could be tested for in utero. The thought that some mother somewhere would abort a child like one of mine fills my heart with despair. My kids are awesome kids and awesome human beings. It would have been a grave error to not allow them life because they are wired differently.

If the mother doesn't think she's capable of raising an autistic child and as a result is prepared to go through an abortion (which is a horrible process), then let her. Being autistic is hard enough with good parents. I used to agree with you, but I'm generally in favour of abortion, so why not be in favour of aborting autistic foetuses?

I like your latest post a lot. I have a friend who is autistic, fairly high functioning but unintelligent. People might think I'm odd when they meet me, but he is obviously disabled. He runs around when everyone else is walking, threatens to feed people to sharks, that sort of thing. For a lot of people he is probably the most disabled non-Downs person they have met. He manages to go to school and achieve reasonable results (on specially designed course, I might add), he can dress, wash and feed himself, he has some understanding of money management, he can hold a conversation (at least by my standards, though it should be said NTs often struggle to communicate with him). You could "cure" him, remove his autism and make him intelligent, but then he'd probably be a lot less happy.

I also know some people who are lower functioning still. The lowest functioning Aspie I know can dress himself and can feed himself with some encouragement, but he struggles to communicate, has extremely repetitive behaviours, and easily experiences sensory overload. The case for "curing" him is initially extremely compelling. Certainly I think curing his sensory issues would be a very good thing. Additionally, I think he understands nearly everything said to him, but he struggles to use more than two consecutive words, so can't explain why he is distressed or what he needs- again, that would be a good thing to "cure". Whether he would then request a cure for his other autistic symptoms, I don't know, but it is dangerous to assume that he would.


Not only that, I'd like to point out that, based on these examples, that autism is NOT a coherent disorder. It's a dumping ground for a lot of different, possibly unrelated conditions which probably should be differentiated. Thus, a complete cure is not possible or coherent. You can fix some bad symptoms. That's it. I don't see what's so threatening about fixing a few symptoms here and there.

Especially when you look at it from a structural perspective: what's wrong with repairing a few holes in a person's white matter (what I believe is the cause of autism) and regrowing a few missing neurons?

People act like treating autism fundamentally would involve subtracting something. That's not true. Even the most successful stem cell therapy would only involve adding something: myelin and neural connections.