autism speaks = traditional while wrong planet = liberal

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Sweetleaf
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09 Sep 2012, 1:14 pm

InThisTogether wrote:
InThisTogether wrote:
Do you think they do? Some of the parents that I know who are big into Autism Speaks couldn't care less about what a group of Aspies say because they see Aspies as not having anything relevant to say.


I should make sure I am being clear: not everyone who supports Autism Speaks is this way. I was simply trying to point out that I don't imagine that many people who strongly identify with Autism Speaks have any desire to come here to read what is said.

I should also point out that I am definitely NOT one of these people.

Sweetleaf wrote:
And also what gives you the idea that everyone who opposes this form of cure is 'advantages'?


I'm sorry, I don't think I understand what your question is? Except for those cases in which I think someone is physically ill from some kind of environmental toxicity which results in autistic symptoms, I don't think a "cure" is possible, and I don't think it has any advantages.


I wasn't responding to you with that....I was responding to Dalurker


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dalurker
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09 Sep 2012, 5:15 pm

Sweetleaf wrote:
Its not simply because we're born with it I say that....its more because it is a difference in neurology and genetics that makes us significantly different from neurotypicals. Its not like a terrible disease someone is born with, it doesn't really get worse on its on or put one at risk of death its more a way of being.

"Difference" in neurology? There are many autistics who lack basic skills, who can't communicate effectively, who have expressive and receptive language impairments. Some have executive functioning, short-term memory, attention problems. Some subsets have visual/spatial and motor impairments. Many can't drive or run errands on their own. Some have low IQs, difficulty learning, and can't drive. Some autistics who wander have ended up drowning. There is risk of death. This is not a "way of being". Not for the large majority of the spectrum.
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So I suppose I don't see what good trying to change it would do......other then attempt to make autistics neurotypical in the hopes it would improve their quality of life. Even so if someone wants to be cured they should have the choice if there is a cure availible but I would never agree with doing it to someone without their consent.

It's like you're not acknowledging what I've been saying. You keep mentioning ideas like turning them into neurotypicals, and scariness of cure. You haven't been talking of actual realities that go on day to day. I don't get why you keep bringing up this idea of consent vs. force. Treatments are seldom forced and who wouldn't want a cure if they needed it? Some want to eliminate the terrible impairments that many autistics have so they can live independently based on their own choices, and not have to be supervised and cared for by others, through administering to them access to many abilities that others have hoarded for themselves, and you make them out to be the heavy.



InThisTogether
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09 Sep 2012, 7:31 pm

I think one of the main problems with this type of discussion is that people tend to lump all autistics into one group as if they are a homogenous set. They are not. Unfortunately, for the masses, autism is either a disease that needs to be "cured" or it is not. People have a hard time as conceptualizing it as both. This is very unfortunate for people who ought to be prized the way they are and not expected to conform to "normal" ways of being. Not all autism is the same. Some likely can't be "cured" because there is nothing "wrong" with them. They are simply different. Some possibly can be cured because something happened that "made" them autistic. Until we can reliably parcel out which is which, it is going to be very difficult for the people on the "neurodiversity" side to have any agreement with the "curbie" side. The truth is, I think that one day we will find out that both sides are right, because there are at least two different "things" that we currently call autism.


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CuriousKitten
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10 Sep 2012, 11:01 am

InThisTogether wrote:
zette wrote:
CuriousKitten wrote:
Autism Speaks = scared NT parents

Wrong Planet = Aspies and Auties themselves.


Could we amend this to:

Wrong Planet = Aspies and Auties themselves + enlightened NT parents

I think most of the NT parents here are mainly interested in helping their children navigate the world rather than focused on finding a magic cure. Talking to adults with ASD helps us a lot, and I'd like to think that we can sometimes be helpful in interpreting the NT world in return.


^^ yes ^^


I stand corrected! :-)


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Sweetleaf
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10 Sep 2012, 12:43 pm

dalurker wrote:
Sweetleaf wrote:
Its not simply because we're born with it I say that....its more because it is a difference in neurology and genetics that makes us significantly different from neurotypicals. Its not like a terrible disease someone is born with, it doesn't really get worse on its on or put one at risk of death its more a way of being.

"Difference" in neurology? There are many autistics who lack basic skills, who can't communicate effectively, who have expressive and receptive language impairments. Some have executive functioning, short-term memory, attention problems. Some subsets have visual/spatial and motor impairments. Many can't drive or run errands on their own. Some have low IQs, difficulty learning, and can't drive. Some autistics who wander have ended up drowning. There is risk of death. This is not a "way of being". Not for the large majority of the spectrum.
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I already know all of that, it does not negate the fact that autism is a neurological difference.....and I myself struggle with a lot of those issues I can't drive and depending on how I feel determines if I can go out and run errands or anything, that does not mean trying to cure me of my autism would be the best approach, and I certainly would not be ok with genetic or neurological modifications I'd prefer to just function to the best of my ability with the issues I have. Just because other people think I should want to function like a neurotypical does not mean I am obligated to feel that way. I find that a positive enivronment helps a lot so I don't see why you find it so hard to fathom that there may be others that struggle with autism and would prefer that approach. And why is it always those with the disorder that are 'wrong' because society says so? You can not decide what is best for everyone and you seem to have it in your head that your the authority on what people with autism should want and strive for and any who disagree are simply irrational.

And what I meant by no risk of death is the disorder itself does not cause death, as in autism is not a deadly disease that someone will die of. I am not saying everyone with autism is fine to be on their own or anything like that....just that I am not sure the risks involved with genetic and neurological modifications would be worth the end benefit. So I think it is important they have the consent of the individual who they want to cure.


So I suppose I don't see what good trying to change it would do......other then attempt to make autistics neurotypical in the hopes it would improve their quality of life. Even so if someone wants to be cured they should have the choice if there is a cure availible but I would never agree with doing it to someone without their consent.

It's like you're not acknowledging what I've been saying. You keep mentioning ideas like turning them into neurotypicals, and scariness of cure. You haven't been talking of actual realities that go on day to day. I don't get why you keep bringing up this idea of consent vs. force. Treatments are seldom forced and who wouldn't want a cure if they needed it? Some want to eliminate the terrible impairments that many autistics have so they can live independently based on their own choices, and not have to be supervised and cared for by others, through administering to them access to many abilities that others have hoarded for themselves, and you make them out to be the heavy.


You said yourself they would attempt to replace 'faulty' genes with better genes...which kind of indicates changing someones genetics in an attempt to make them neurotypical. I mean if by curing autism you don't mean making someone neurotypical what would the cure make them? And yeah I find that sort of thing scary, not much I can do about how something makes me feel the idea of having my genetics and neurology messed with by people is disturbing to me.

Also I keep bringing up consent vs force because I think its important if one is to undergo an invasive gene altering treatment like that, that they agree..........and its not something like some parent forcing their child to undergo dangerous 'therapy' just to make them more 'tolerable.' And see you say treatments are seldom forced and then ask who wouldn't want a cure if they 'needed' it. Well who are you or anyone else but that individual and maybe those closest to them to decide if they need a cure, and/or if it is the best option for that specific individual based on various factors. Having autsim does not make one 'needing' of a cure...if someone with autism does feel that way though then they should have every right to a cure. Just ignoring possible issues that could arise for the sake of being ok with a cure is not the way my brain works.

And its great some people want to eliminate all these impairments, but they need to take into consideration how the people with the impairments feel about it that is all I am saying, to ignore them in the name of making their lives better seems counter productory to me.

And what skills are these that people horde for themselves, its not as though humans have the ability to trade strengths and weaknesses...You cannot really resent someone for having more abilities than someone else anymore than you should resent someone for having less abilities than someone else.


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10 Sep 2012, 3:26 pm

I always thought Autism speaks = Magnetos inner circle while Wrong planet=The Xavier Institute!!


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dalurker
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10 Sep 2012, 5:24 pm

Sweetleaf wrote:
I already know all of that, it does not negate the fact that autism is a neurological difference.....

So anything that is technically a neurological difference is necessary and sacrosanct, no matter what the effects of it are?

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You can not decide what is best for everyone and you seem to have it in your head that your the authority on what people with autism should want and strive for and any who disagree are simply irrational.

I'm not going to acknowledge the opposite of reality to avoid seeming like a mean jerk. I don't think that so many autistics are for some reason obliged to suffer, or that we should have to define our lives around that suffering. If you have these ideas, it wouldn't be a problem if you didn't bolster this campaign against cure. It's not like the actual organizations that deal with this issue haven't responded to some of this rhetoric.

Quote:
And what I meant by no risk of death is the disorder itself does not cause death, as in autism is not a deadly disease that someone will die of. I am not saying everyone with autism is fine to be on their own or anything like that....just that I am not sure the risks involved with genetic and neurological modifications would be worth the end benefit. So I think it is important they have the consent of the individual who they want to cure.

If someone's particular form of the condition contributed to their death, it should be noted.

Quote:
You said yourself they would attempt to replace 'faulty' genes with better genes...which kind of indicates changing someones genetics in an attempt to make them neurotypical. I mean if by curing autism you don't mean making someone neurotypical what would the cure make them?

It would make them non-disabled. Sufficiently functioning, I guess.

Quote:
Also I keep bringing up consent vs force because I think its important if one is to undergo an invasive gene altering treatment like that, that they agree..........and its not something like some parent forcing their child to undergo dangerous 'therapy' just to make them more 'tolerable.' And see you say treatments are seldom forced and then ask who wouldn't want a cure if they 'needed' it. Well who are you or anyone else but that individual and maybe those closest to them to decide if they need a cure, and/or if it is the best option for that specific individual based on various factors.

You keep implying mean parents would want this to make the goal seem unwanted and therefore bad. And you assume it would be dangerous, even though you can't prove it will be. And who closest to them should decide? So you don't think it's completely intolerable for someone else besides the individual to decide. Now you have to show they'd really be choosing in their best interest. What various factors could possibly make it beneficial to remain mentally disabled?

Quote:
Having autsim does not make one 'needing' of a cure...if someone with autism does feel that way though then they should have every right to a cure. Just ignoring possible issues that could arise for the sake of being ok with a cure is not the way my brain works.

Making up all of this slander and assumptions against the idea of cure and those who support the goal, while trying to convince others that it often wouldn't be helpful, is not reconcilable with recognizing right to cure.

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And what skills are these that people horde for themselves, its not as though humans have the ability to trade strengths and weaknesses...You cannot really resent someone for having more abilities than someone else anymore than you should resent someone for having less abilities than someone else.

What skills do you think. Not only basic life skills, but skills necessary for educational advancement and career. We're getting a lot closer to getting the ability to transfer strengths. I don't see why one shouldn't resent one for having more abilities. Particularly if they don't want to share them.



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10 Sep 2012, 7:23 pm

dalurker wrote:
Sweetleaf wrote:
I already know all of that, it does not negate the fact that autism is a neurological difference.....

So anything that is technically a neurological difference is necessary and sacrosanct, no matter what the effects of it are?

[b]No but if someone has a neurological difference that is the way it is, not saying they cannot have difficulties because of it. But even so it is not exactly something that can be removed without risk.


Quote:
You can not decide what is best for everyone and you seem to have it in your head that your the authority on what people with autism should want and strive for and any who disagree are simply irrational.

I'm not going to acknowledge the opposite of reality to avoid seeming like a mean jerk. I don't think that so many autistics are for some reason obliged to suffer, or that we should have to define our lives around that suffering. If you have these ideas, it wouldn't be a problem if you didn't bolster this campaign against cure. It's not like the actual organizations that deal with this issue haven't responded to some of this rhetoric.

To me having my genetics and neurology messed with by people and being forced to 'recover' from autism would be suffering to me. When the hell did I say anyone is obligated to suffer or that they have to define their lives around suffering...you're kind of putting a lot of words in my mouth.

And what campaign I am not part of any campaign I just don't think dangerous treatments should be forced on people, I see no harm in that.


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And what I meant by no risk of death is the disorder itself does not cause death, as in autism is not a deadly disease that someone will die of. I am not saying everyone with autism is fine to be on their own or anything like that....just that I am not sure the risks involved with genetic and neurological modifications would be worth the end benefit. So I think it is important they have the consent of the individual who they want to cure. [/b]

If someone's particular form of the condition contributed to their death, it should be noted.

Yes it should, if that was a factor it should certainly be noted....I never said it shouldn't.

Quote:
You said yourself they would attempt to replace 'faulty' genes with better genes...which kind of indicates changing someones genetics in an attempt to make them neurotypical. I mean if by curing autism you don't mean making someone neurotypical what would the cure make them?

It would make them non-disabled. Sufficiently functioning, I guess.

Removing someones autism would make them neurotypical...if you refer to that as sufficiently functioning I guess that works to.

Quote:
Also I keep bringing up consent vs force because I think its important if one is to undergo an invasive gene altering treatment like that, that they agree..........and its not something like some parent forcing their child to undergo dangerous 'therapy' just to make them more 'tolerable.' And see you say treatments are seldom forced and then ask who wouldn't want a cure if they 'needed' it. Well who are you or anyone else but that individual and maybe those closest to them to decide if they need a cure, and/or if it is the best option for that specific individual based on various factors.

You keep implying mean parents would want this to make the goal seem unwanted and therefore bad. And you assume it would be dangerous, even though you can't prove it will be. And who closest to them should decide? So you don't think it's completely intolerable for someone else besides the individual to decide. Now you have to show they'd really be choosing in their best interest. What various factors could possibly make it beneficial to remain mentally disabled?


Yes they very well could...also to me its kind of common sense that trying to change someones neurology and genetics would likely be dangerous I don't know for sure but it seems pretty obvious. What makes you so sure it wouldn't be dangerous? you have no proof of that. And yes I think if someone else besides the individual decides without the individuals imput that would be a bad thing...its not up to someone else to decide what someone wants done to their neurology and genetics. Also it would be a risk vs. benefit thing it would have to be determined if its worth the risk.

Quote:
Having autsim does not make one 'needing' of a cure...if someone with autism does feel that way though then they should have every right to a cure. Just ignoring possible issues that could arise for the sake of being ok with a cure is not the way my brain works.

Making up all of this slander and assumptions against the idea of cure and those who support the goal, while trying to convince others that it often wouldn't be helpful, is not reconcilable with recognizing right to cure.

What slander have I made up? and those aren't assumptions that is my opinion.

Quote:
And what skills are these that people horde for themselves, its not as though humans have the ability to trade strengths and weaknesses...You cannot really resent someone for having more abilities than someone else anymore than you should resent someone for having less abilities than someone else.

What skills do you think. Not only basic life skills, but skills necessary for educational advancement and career. We're getting a lot closer to getting the ability to transfer strengths. I don't see why one shouldn't resent one for having more abilities. Particularly if they don't want to share them.


Huh? and how the hell are people going to share their abilities.....I'm bloody through with this I don't have any of the skills you speak of, and I certainly do not expect people to be able share their abilities with me. How would they do it, just because two people can trade jeans does not mean they can trade genes. But I'm the irrational one here.


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10 Sep 2012, 7:33 pm

I do not subscribe to the " Lets bash Autism speaks" dogma that seems to be prevalent in our Asperger community. I wonder how many of you have met or seen the severely autistic or more traditional Kanner version of Autism? We seem to forget in our community that Autism Speaks is searching for a cure for those who can't even wipe their own butts, who can't eat without assistance, etc. I work for my states DHS and I doubt many of you have any experience with how it impacts families and the financial system in general. Yes, its ok to preach neurodiversity for those of us on the Higher end of the spectrum but the reality is that as we try to teach people that autism is not just the severe we do have to put this in perspective..not everyone with an ASD is like us, either.



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10 Sep 2012, 8:58 pm

Sweetleaf wrote:
No but if someone has a neurological difference that is the way it is, not saying they cannot have difficulties because of it. But even so it is not exactly something that can be removed without risk.

So what it's the way it is? That is a justification for nothing. The difficulties are not bearable. Period. There is no risk in removing it.

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When the hell did I say anyone is obligated to suffer or that they have to define their lives around suffering...you're kind of putting a lot of words in my mouth.

And what campaign I am not part of any campaign I just don't think dangerous treatments should be forced on people, I see no harm in that.

What am I supposed to conclude from what you say? You acknowledge that there are impairments with suffering resulting, but are saying the basis of those impairments must not be altered. You obviously were influenced by those who claimed cure is bad. Why are you assuming well-studied and proven treatments would be dangerous?

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Yes it should, if that was a factor it should certainly be noted....I never said it shouldn't.

Then please acknowledge that conditions that come with the risk, are themselves risky.


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Yes they very well could...also to me its kind of common sense that trying to change someones neurology and genetics would likely be dangerous I don't know for sure but it seems pretty obvious. What makes you so sure it wouldn't be dangerous? you have no proof of that. And yes I think if someone else besides the individual decides without the individuals imput that would be a bad thing...its not up to someone else to decide what someone wants done to their neurology and genetics. Also it would be a risk vs. benefit thing it would have to be determined if its worth the risk.

Common sense doesn't exist. Lots of invasive complex medical procedures are done safely due to research and established protocols. They have highly skilled professionals to devise such treatments who are knowledgeable of the effects of what they deal with.

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What slander have I made up? and those aren't assumptions that is my opinion.

You accuse others of wanting to force it on those who supposedly don't want it, and that it will be administered even if it's dangerous.

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Huh? and how the hell are people going to share their abilities.....I'm bloody through with this I don't have any of the skills you speak of, and I certainly do not expect people to be able share their abilities with me. How would they do it, just because two people can trade jeans does not mean they can trade genes. But I'm the irrational one here.


Study others' brains in comparison to others with less aptitudes. Then conclude what aspects of the nervous system, including underlying genetic variation, determine certain aptitudes. Then come up with techniques to alter someone else's brain so they will have the features that enable those aptitudes. I'm not talking of a trade. I'm talking of a redistribution to spread around the beneficial/necessary variations to others, so it evens out.