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Chris71
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14 Nov 2012, 10:32 am

MrXxx, I am with you all the way on this thread.

I totally respect people who wish to remain the way they are.
However that does not give them the right to enforce (or speak in a tone which suggests they would rejoice in the enforcement of) continued suffering of others who may be on the spectrum and could really benefit from some hypothetical future medication to relieve them from some of the worst aspects for that individual being on the spectrum.

Imagine if a hypothetical future medication were to become available that merely improves sensory intensity issues.
Then the authorities remove the license for it, so nobody can ever take a trial of it or attempt to feel the benefits, because a select community of anti-curebies have protested loudly enough to get it banned under the cause of "we don't need to be cured".

Also there is no reason to spin the subject of autistic research, into forced medication or forced personality changes. They are completely separate subjects.

A politically brainwashed child in North Korea would not imagine living in Western countries because their perception that they are evil and would never want to be 'forced' to see the rest of the World because they have already concluded that the rest of the World is evil. Only when they see the real World are they able to make a well educated judgement of where they would really like to be. Surely the same thing applies to people on the spectrum?



Last edited by Chris71 on 14 Nov 2012, 10:36 am, edited 1 time in total.

MrXxx
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14 Nov 2012, 10:33 am

^^^^Great points!^^^^

I think the fear of a "cure" stems from the thinking "If there is a cure, someone may force it on me. Therefore, I don't want there to be a cure."

But if we live in a society that CAN forced a cure on anyone unwillingly, then we really have a much bigger problem than the fact that a cure exists. And that is a different problem that isn't preventable by stopping the search for a cure.

The existence of a cure does not mean that everyone who has autism will be forcibly cured.

The problem I have with that "logic" is that while it uses the argument that if a cure exists, we may all be forced to submit to it, and that is bad, the same line of "logic" then concludes that there should be no cure. And that is contradictory. First, if we are forced to submit to a cure, we are being submitted to a totalitarian ideal of some kind. Second, if we then use that as "reason" for no cure to be sought for anyone, then we ourselves are promoting the same kind of totalitarian thinking in reverse. In essence, what we would be saying is that because WE don't want to be cured, NOBODY should be. And that, in itself, is a form of totalitarian thinking.

Rather than insisting there should be no cure, we ought to be promoting the idea that we all should have the CHOICE. And that means we ought to bugger out of whether others want to seek a cure, and instead work toward the ideal that if there is a cure found, those who WANT it ought to have it, and those who don't can choose not to.

Another thing I think is being missed by those who insist there should be no cure, is a bit more subtle. The fear of a cure, I think, comes from the fact that we don't yet understand exactly WHAT autism is, much less what causes it. Add to that the complication that most of us function fairly well with it, and don't know what effects a "cure" might have on us, and many of us want nothing to do with a cure.

But here's what I think is being missed. In order to solve any problem, we have to understand the problem. In order to "cure" anything, we have to understand what we're curing. To cure autism, we have to know what causes it first. And there could be many different causes, and therefore there could be many different cures. That being said, some cures may not work for some people. If any cure(s) is/are found, curing any individual's autism isn't likely to be as simple as "Here. Take this pill."

The thing is, for there to be a cure or even a number of cures, science has to understand autism far better than it now does before that can happen. So it's not as if suddenly there will be this pill, or this injection, or operation that will suddenly eradicate autism altogether, even though we don't understand what the heck it is or what causes it.

We HAVE to understand it far better than we do now before that can happen. If we come to a full enough understanding of it to actually come up with some cures, or "a cure," we should by then also understand that not everyone needs to be cured.

But to simply think in a way that excludes those who may want and need a cure is, to me, purely selfish.


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Chris71
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14 Nov 2012, 10:49 am

"In order to solve any problem, we have to understand the problem."

Yes of course. On some threads on WP, the mere mention of research into understanding autism without mentioning anything about medication or treatments, is enough to get some regular members to chant their anti-cureby killer instinct.

Another thing; what if a medication were to become available that reliably relieves specific sensory issues that are known to be preventing some people on the spectrum from getting a job, issues that are keeping them on disability benefits.
Then that person refuses to take that medication. Should they still be allowed to claim disability benefits?



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14 Nov 2012, 11:11 am

Chris71 wrote:
Then that person refuses to take that medication. Should they still be allowed to claim disability benefits?


Fair question, but one problem with it.

I don't know that anyone on disability is currently being made to take any medications under the threat of losing benefits.

If you can provide some examples, there is room for discussion.

On the other hand, let's say a drug like that did exist, and would enable you to work. Why would you NOT want to take it? You see, then we're getting into whether an individual wants to be a contributing member of society or not, and that's a whole other can of worms.

I could complicate that even further by asking you a counter question. If there were a medication that produced the desire to work in Autistics, should those who don't want to take it be forced to take it else lose their benefits?

Of course, when it comes to people on public benefits paid for by taxpayers, that opens a whole separate discussion. No matter what the circumstances, each case would have to be looked at on its own merits. But that's nothing new.

Autism doesn't necessarily mean we aren't capable of being stubborn and lazy. It just means there is an alternate explanation for what others see as stubbornness and laziness.

I can't answer the question you asked anymore than you can answer mine, because there are no blanket answers for either of them, and there shouldn't be. Each case will have to be considered individually. Mistakes will be made.

But is that alone reason enough to shut down all research into cures? I don't think so.


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14 Nov 2012, 12:10 pm

Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.



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14 Nov 2012, 12:22 pm

androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but I suppose it's worth asking in this case. Do you have a source for that info?


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Last edited by MrXxx on 14 Nov 2012, 12:31 pm, edited 1 time in total.

Chris71
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14 Nov 2012, 12:27 pm

androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.

Wrong. Just because the larger Neurotypical population would include some dumbwit characters like Beavis and Butthead who could never appreciate HD TV, it does not imply that such characters should form the standard reference for what you consider a Neurotypical person.
Also most NTs I work with are quite appreciative of HD TV and do notice small details, and have logical minds when they want to. They have more choice on what to notice. We don't.



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14 Nov 2012, 12:28 pm

MrXxx wrote:
androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but sometimes but I suppose it's worth asking in this case. Do you have a source for that info?
both donna williams and temple grandin have written books saying just about the same thing.

whether that makes it true or not i dont know,but androbot is certainly not the first stake such a claim


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14 Nov 2012, 12:37 pm

vermontsavant wrote:
MrXxx wrote:
androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but sometimes but I suppose it's worth asking in this case. Do you have a source for that info?
both donna williams and temple grandin have written books saying just about the same thing.

whether that makes it true or not i dont know,but androbot is certainly not the first stake such a claim


Interesting. I wasn't aware of that. Odd though, to me, only because HD actually irritates me due to sensory issues. (getting somewhat off topic here I know but...)

HD, from my perspective, has caused the stress of TV and movie productions to become more about how things look in HD, and less about good story lines and decent writing too. Plus the sharp image actually does annoy me because it's too distracting from the real reason I watch stuff, which is for the stories and content, not the clarity of imagery.


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14 Nov 2012, 1:01 pm

MrXxx wrote:
vermontsavant wrote:
MrXxx wrote:
androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but sometimes but I suppose it's worth asking in this case. Do you have a source for that info?
both donna williams and temple grandin have written books saying just about the same thing.

whether that makes it true or not i dont know,but androbot is certainly not the first stake such a claim


Interesting. I wasn't aware of that. Odd though, to me, only because HD actually irritates me due to sensory issues. (getting somewhat off topic here I know but...)

HD, from my perspective, has caused the stress of TV and movie productions to become more about how things look in HD, and less about good story lines and decent writing too. Plus the sharp image actually does annoy me because it's too distracting from the real reason I watch stuff, which is for the stories and content, not the clarity of imagery.
they did not ever say anything about HD TV.

but they both have written that there autistic sesory differences have helped them do and understand things that NT's cannot.i have never read them say any specifily about HD TV.


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14 Nov 2012, 1:04 pm

vermontsavant wrote:
MrXxx wrote:
vermontsavant wrote:
MrXxx wrote:
androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but sometimes but I suppose it's worth asking in this case. Do you have a source for that info?
both donna williams and temple grandin have written books saying just about the same thing.

whether that makes it true or not i dont know,but androbot is certainly not the first stake such a claim


Interesting. I wasn't aware of that. Odd though, to me, only because HD actually irritates me due to sensory issues. (getting somewhat off topic here I know but...)

HD, from my perspective, has caused the stress of TV and movie productions to become more about how things look in HD, and less about good story lines and decent writing too. Plus the sharp image actually does annoy me because it's too distracting from the real reason I watch stuff, which is for the stories and content, not the clarity of imagery.
they did not ever say anything about HD TV.

but they both have written that there autistic sesory differences have helped them do and understand things that NT's cannot.i have heard read them say any specifily about HD TV.


Ah.

That's why I was wondering if there was a reference for the info. Considering how I've reacted to HD, it would come as a surprise to me if it were true. But if it is true, it would be interesting anyway.


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14 Nov 2012, 1:15 pm

MrXxx wrote:
vermontsavant wrote:
MrXxx wrote:
vermontsavant wrote:
MrXxx wrote:
androbot2084 wrote:
Without autistic sensory intensity issues we would have no high definition television technology because neurotypicals are satisfied with mediocrity as far as sensory experiences go.


Ooookaay. :?:

I hate when other people do this sometimes, but sometimes but I suppose it's worth asking in this case. Do you have a source for that info?
both donna williams and temple grandin have written books saying just about the same thing.

whether that makes it true or not i dont know,but androbot is certainly not the first stake such a claim


Interesting. I wasn't aware of that. Odd though, to me, only because HD actually irritates me due to sensory issues. (getting somewhat off topic here I know but...)

HD, from my perspective, has caused the stress of TV and movie productions to become more about how things look in HD, and less about good story lines and decent writing too. Plus the sharp image actually does annoy me because it's too distracting from the real reason I watch stuff, which is for the stories and content, not the clarity of imagery.
they did not ever say anything about HD TV.

but they both have written that there autistic sesory differences have helped them do and understand things that NT's cannot.i have heard read them say any specifily about HD TV.


Ah.

That's why I was wondering if there was a reference for the info. Considering how I've reacted to HD, it would come as a surprise to me if it were true. But if it is true, it would be interesting anyway.
i never meant to respond that specificly to hd tv.but books like "autism and sensing the unlost instinct" by donna williams and several of temple grandins books show how autistic ability to sense things differently can help us understand things other cant

for example temple grandin credits her autism with helping her understand cattle behavior and has helped her revolutionize cattle ranching in colorado and wyoming


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14 Nov 2012, 1:29 pm

Temple Grandin has criticized the old analog televisions because these televisions create annoying stroboscopic flicker as a result of interlace scanning technology. It was the geeks of the computer industry that championed progressive scanning technology to eliminate this annoying flicker but the neurotypicals in the television industry continue to champion scrambled interlace scanning calling this abomination "Full High Definition 1080i". Autistics insist that only 720p can be considered high definition and are persecuted because of that belief.



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15 Nov 2012, 8:28 am

dalurker wrote:
fluffypinkyellow wrote:
Aspertastic424 wrote:
Ok, I just need to start off by saying I have aspergers syndrome. I know I will get a lot of flack for this topic, but it is something I kind of believe.

My father and I had kind of an argument about this.

My mom is getting a degree in autism special education, and we have a little autitistic boy come over to our house for reading help. Unlike children with aspergers he seems fundamentally "locked in his own little world."

I have no problem with diversity. Its just I couldnt help but thinking as I watched him sort of sing to himself and repeat the questions he was asked, would he be better off if he was cured?

You might say there is nothing to cure. I just think it would be good if severely autistic kids like him had autism removed. That way they would be able to communicate, and have their lives far more open to them than they are now. If their autism was removed they could have a choice of learning or not, of being able to speak well and communicate with others, and choose to form friendships.

I know aspergers has its upsides. But severe autism seems not to, like it just condemns people who have it to be dependent for the rest of their lives and never be able to over come their difficulties to actually understand the world around them. My heart was filled with sorrow and frustration for the little child, not rejection.

Can anyone relate to what I am saying? Or am I bad for thinking it?


You're not a bad person for having these thoughts. I tend to lean towards focusing on wanting to change the society we grow up in so that autistic people can be better understood and that they can eventually live independent lives in jobs that play to their strengths. But I recognise that it can be very frustrating having autism. My form is mild and I still find it exhausting and horrible to try understanding people sometimes.

In general, I think in some ways it has become harder to be an autistic person in modern western cultures. In the last 50 or so years, we have developed this sort of very social extrovert culture, where everyone is expected to be friendly, chatty, and extroverted, and if someone isn't, it's seen as something "wrong". If you look at job vacancies, they all want an "outgoing team player". They all want someone who wants "something different every day", and who "loves chatting with new people". I've never seen a job ad asking for a quiet/thoughtful/inwards-focused person, although this type of personality is no less valuable. If someone is naturally more reserved, people become suspicious of them. People who simply tend to be quieter are continually told to "get out of your shell".

So I think to some extent it's society that makes being autistic harder. In some Asian cultures, quietness is seen as important in an environment and people tend to live more private lives. Whereas in a lot of Western cultures, we have this idea that everything should be partyish. As a culture, we've really lost a lot of our appreciation for quiet personal contemplation, and that's a real shame. I think if this boy you describe was growing up in a culture that wasn't so focused on social skills, a culture where job opportunities were tailored towards introverted people, and where people were able to support him to find and capitalise on his strengths, he could grow up to live an independent adult life as he is. I think a lot of severely autistic people could find fulfilment working with animals, working in research, editing papers or working online.


You seem to not know what severe autism really means. The introvert/extrovert dichotomy doesn't really exist. It does not characterize autism. Deficits in basic communication exist for the the severely autistic. Choosing to be reclusive and liking being reclusive, isn't the same thing as being unable to communicate with others.

Basic communication includes the kind of basic interactions you would have day to day with others. Jobs usually involve many workers who have to communicate with each other to organize the work being done. Communication is needed to exchange necessary information. Wanting to tailor job opportunities for hypothetical "introverts" doesn't prove that such a hypothetical job category can exist and be financially viable. Jobs have to end up resulting in the production of wanted/valuable entities that are therefore marketable. If they don't, such jobs won't last. Severe autistics cannot work in research/editing papers, etc. Those require lots of skills/aptitude, which low-functioning/severe autistics lack.


People with severe autism aren't so much noncommunicative as unable to communicate in mainstream ways. I also think the idea of low functioning is relative, as is the idea of non-communication. This video really illustrates this point to me. In this video, everyone believed that this girl was unable to communicate at all for years. She was thought to be "low functioning" for most of her life until she started communicating through typing:

[youtube]http://www.youtube.com/watch?v=U_GXVzZ0Unk[/youtube]

And yet, if she had lived 200 years ago, she would have been "unable to communicate". I'm confident that there are a lot of other people affected similarly to her, and they are certainly capable of living fulfilled lives, including jobs, given acceptance and the right opportunities. As technology continues to advance, I imagine more and more autistic people previously thought of as low-functioning or uncommunicative will be able to express themselves. The rest of society would do well to expand its definition of communication.



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15 Nov 2012, 8:33 am

fluffypinkyellow wrote:
And yet, if she had lived 200 years ago, she would have been "unable to communicate". I'm confident that there are a lot of other people affected similarly to her, and they are certainly capable of living fulfilled lives, including jobs, given acceptance and the right opportunities. As technology continues to advance, I imagine more and more autistic people previously thought of as low-functioning or uncommunicative will be able to express themselves. The rest of society would do well to expand its definition of communication.


Good points, but...

How would she fair in the midst of a natural disaster, in an emergency situation with no power, and no technology to help her communicate?

The question, in context with this thread, is whether she would want to remain the way she is if a cure were available, or would she choose the cure?

Since she's not here to answer, we'll never know, but it's worth pondering.


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Chris71
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15 Nov 2012, 9:08 am

If there were any medications that were specifically targeted at treating this girl's specific functional challenges (remember, "difficulties" or "challenges" to many people on the spectrum would mean "dealing with Neurotypical people"), then even if she wanted to try out some particular medication really badly, I'm sure there will be hundreds of anti-curebies trying to get that same medication banned.

With some people on the spectrum, the impaired Theory of Mind means they cannot understand what it is like to be for other people, or understand other people's desires from the context of other people's lives and situations. Therefore if a person with a highly impaired Theory of Mind happens to feel good about being on the spectrum, then such a person is more likely to preach an ideology that everyone else on the spectrum should have a similar attitude. That's why usually when someone mentions medical research on WrongPlanet formums, they get their head bitten off by an anti-cureby.

The impaired Theory of Mind also suggests they might not understand how NT people are able to enjoy life outside of the spectrum, doing things like chatting, drinking, sexually-realated mind games, flirting, gossiping, talking about nothing etc.
Some aspies have mentioned NT world as somehow 'toxic' compared to their own orderly structured ways. Although I respect their own views, I might add that the impaired Theory of Mind prevents them to really understand that other NT people can enjoy the very things that they would find sheer hell, as they can only view the NT world from their own perspective.
Maybe that is what scares some aspies to turn nasty on any suggestion of medical research into understanding autism related disorders.

A common reaction I've read from some aspies is to suggest that NTs are incapable of the highly logical thought processes that a particular aspie might pride him/herself on. From the many NT people I have lived and worked with, the NT person has a choice in getting fulfillment from both highly logical thought activities *as well* as other activities that the aspie would find sheer hell. The NT has the choice. The aspie doesn't.

Like the brainwashed North Koreans who love their own dictator, they won't know how good life might be until they really are able to appreciate life outside your own boundaries/borders. The impaired Theory of Mind, is the border.



Last edited by Chris71 on 15 Nov 2012, 9:31 am, edited 2 times in total.