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ozmom
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12 May 2011, 5:09 am

Boy, all of you have great points and are great writers. You should all get together and write a book. Tell people what you want and what research you would like. Tell about your visions of the future - what you want out of life. Try to avoid blame and hate (though a history of abuses should be included, just not the focus). There is a lot of great stuff on this site, but most NTs and policy makers and school personnel etc never see it or come visit here. Maybe you all could even do a wrong planet book mostly from forum material...? Anyway, it is an idea.



ci
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12 May 2011, 10:48 am

BokeKaeru wrote:
I specifically pointed out the wording I found to be condescending - the "you'll understand as time goes on" language, which is very patronizing. I would have still disagreed with your point if you had left that out, but I could at least have dealt with it purely on the merits of your statement rather than feeling bothered by its form as well.

Unfortunately, aversive behavioral modification still exists and is used on people with developmental disabilities in both public and private institutional settings. Restraint and seclusion are used and misused, often coercively, on people with autism in public schools as well as residential facilities all the time. I live in a state where there is a facility that uses contingent electric shock as a form of punishment on people with developmental and psychiatric disabilities - the Judge Rotenberg Center, in case you're interested - and has for the past two decades. (Efforts at banning) abusive forms of behavioral modification is my special interest, and I've worked at several legal organizations that are trying to limit or ban such practices. The problem is anything but one of the past, and I can provide you with sources on that as needed.

Normalization should be a choice, but often is not, especially for people who don't have full legal capacity and/or are placed in institutional settings where other people make key decisions about their lives and well-beings. Even if all people confronted with the choice as to whether to accept a hypothetical cure for autism were adults with full legal capacity, there are still societal pressures and stigmas that would force many people's hands. That's what needs to change, so that the choice to (not) be autistic would truly be a free one if a cure was discovered.


It's not patronizing. There are several ways to interpret the statement autism way of thinking. It's as if because I have autism I'd have to think a certain way or others. Although it depends on context an autism way of thinking in how it has been expressed to me seems to have been used to imply people with autism view certain issues the same way as if to agree because my and others brains are a certain way. Or another context I've come across is the autism way of thinking means only certain ways of understanding the world which has been proven least to me as a fallacy. It's annoying to me how people assume at times I think a certain way when I do not.

Yes I've heard of that center. Last night I tried to find a video that I've seen before on the YouTube. I wanted people to vote on the video and comment. An individual of the age of 3 - 6 with self-injury behavior would not stop self-injury unless the parents put on an electric device. The behavior stopped and I think the device removed over a period of time. The electric shock was only enough to prompt the individual as a distraction.

When it comes to normalization you will find advocacy against it in the anti-cure movement. It's really hard to understand how to make everyone happy. If becoming more normal is insulting to begin with then offering normalization would also be insulting. I suppose different states are different from one another. Also the institutionalization there is a whole law about there here called the Lanterman Act and it's primary premise is to get people out of those settings and into community supports. The department of Justice on the federal level does sue states for not doing similarly.


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BokeKaeru
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12 May 2011, 10:34 pm

You seem to not be getting the point. "You'll realize as time goes on" sounds a LOT like you'll telling me like I'll understand something too complex for my wee little brain when I'm older and wiser (like you, I assume the implication is), when I very much do understand right now and have before you pointed it out earlier in the discussion that not all autistic people think the same way and am still anti-cure. That's why it's patronizing - you're treating my viewpoint like it's the result of not only being unaware, but being presently unable to understand something, whereas I have figured it in and still believe what I do even with that knowledge. Maybe that wasn't the implication, but I rarely, if ever, hear people talking that way unless they're implying that the person they're talking to is somehow not only ignorant but immature as well.

I'm not going to derail this thread with the details of how absolutely non-benign the treatment at the JRC and other behavioral modification facilities are, because I could go on forever. However, here's one of the reports on the JRC's practices by an outside governmental agency that explains how they actually use electric shock and other aversives: http://boston.com/news/daily/15/school_report.pdf.

The problem with normalization is that it emphasizes the wrong thing at times, and it takes the emphasis away from learning to function one's best as oneself if doing so would seem strange to other people. The anti-institutionalization measures are a good start, and hopefully eventually the focus will truly shift towards inclusion and acceptance - acceptance of us as ourselves, not what we could be if we changed ourselves.



ci
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12 May 2011, 10:43 pm

BokeKaeru wrote:
You seem to not be getting the point. "You'll realize as time goes on" sounds a LOT like you'll telling me like I'll understand something too complex for my wee little brain when I'm older and wiser (like you, I assume the implication is), when I very much do understand right now and have before you pointed it out earlier in the discussion that not all autistic people think the same way and am still anti-cure. That's why it's patronizing - you're treating my viewpoint like it's the result of not only being unaware, but being presently unable to understand something, whereas I have figured it in and still believe what I do even with that knowledge. Maybe that wasn't the implication, but I rarely, if ever, hear people talking that way unless they're implying that the person they're talking to is somehow not only ignorant but immature as well.

I'm not going to derail this thread with the details of how absolutely non-benign the treatment at the JRC and other behavioral modification facilities are, because I could go on forever. However, here's one of the reports on the JRC's practices by an outside governmental agency that explains how they actually use electric shock and other aversives: http://boston.com/news/daily/15/school_report.pdf.

The problem with normalization is that it emphasizes the wrong thing at times, and it takes the emphasis away from learning to function one's best as oneself if doing so would seem strange to other people. The anti-institutionalization measures are a good start, and hopefully eventually the focus will truly shift towards inclusion and acceptance - acceptance of us as ourselves, not what we could be if we changed ourselves.


I think it's common knowledge that science is still figure out autism and I have yet to find one person with autism that really has an autism way of thinking. What your doing is playing the victim of my statement by warping what I'm saying, inventing into it and constructing a mode of interpretation to win side arguments. It's not a mutual exchange of information for constructive result because your claiming I'm somehow superior to you simply because I have a different way of thinking and you are the victim of my thinking. By doing so you hope to pressure me into a point of view that you hold when I'm simply making it very clear people with autism have many different views and ways of thinking. I am tired of the aspie perspective assumption others portray as if I should or do think a certain way and most people with autism do not know about it.

---

Treating the other items as separate normalization is under law a protected right either way. Societal attitudes don't tend to least from my perspective demand a person with a developmental disability become normal. The idea however that an individual is not capable and cannot do a job because we / they are not responsible or determined enough is a noticeable stereotype but is not universal. The worse kind of assumption is that people with developmental disabilities and including autism do not want to work and should not because that's what benefits are for.

I am not sure why your bringing up electric shock. Lanterman Act guide specifically states no one can force someone with a developmental disability to experience that. Why don't you start a topic about that subject.

I do think for myself and I'd only expect that you do as well.


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HDLMatchette
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23 Apr 2014, 2:49 pm

the problem with "cure" is that it usually implies something is a sickness, and to say "cure autism" means to get rid of it all. when you teach someone to talk, you don't call that curing, but apparently, people call it one when they teach us how to talk.



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23 Apr 2014, 3:07 pm

The reason I don't like the idea of a cure, is because cure implies getting rid of the disorder....which would mean somehow turning an autistic brain into a neurotypical brain....which for one sounds quite dangerous and for two doesn't seem like something that will be possible any time in the near future. So essentially I feel resources could be better used for treatments that can help people with autism(not treatments that force them to act normal and promote the idea any autistic behavior/trait is 'wrong') and what sort of accommodations in society might help.

If there is a treatment that can help non-verbal autistic people learn to express themselves verbally, I'd be all for that....or if there is something that can reduce the intensity of sensory sensitivities then I certainly wouldn't want someone to be denied access to that. But to effectively cure autism they'd probably have to do some very dangerous complex brain surgery or screw around with genetics and things that could be very dangerous and not worth the risk just to have a normal functioning brain.


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23 Apr 2014, 3:13 pm

ci wrote:
Simply not true all the time. A child has the right to be free from harm. A parent has the responsibility to seek the best interest for the child. If you determine not being able to speak, not being able to function well in certain environments and so on as simply a way of being you are right. However does a child that experiences hardship deserve to wait until he or she has the competency at an early age to determine this for him or herself for social and political reasons. Tell me specifically in what ways is a child abused, has their rights removed and or suffers as a result of treatment advancements and the treatments themselves.


Well there are some treatments that are harmful, or sometimes incompetent mental health professionals might mis-use certain treatments, so there are actually a lot of situations where a child might suffer abuse in the name of 'treatment'. A couple years ago there was some supposed 'cure' that involved forcing the child to ingest small amounts of bleach to get rid of the digestive bacteria causing the autism or some stupid crap like that....then people using this treatment wondered why their child had constant digestive issues and was in pain or acting out....well you try being forced to ingest toxins in the attempt of being cured. So yeah it is a good idea to be very well informed on various treatments and the risks they carry or if its even a valid treatment in the first place.


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23 Apr 2014, 4:56 pm

The irony with curbies anti curbies debate is that the "cure" may just be some form of hormone therapies that may just simply make people that are LFA more HFA. Something that I think both sides could be happy with,



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23 Apr 2014, 7:27 pm

Stoek wrote:
The irony with curbies anti curbies debate is that the "cure" may just be some form of hormone therapies that may just simply make people that are LFA more HFA. Something that I think both sides could be happy with,

why? am fine being self, why shoud we automaticaly be turned into something we are not to satisfy other peoples belief we are suffering and need cruely awakening to a world and society we have never been a part in?
we are who we are,the only tragedy to our autism is that people see us as costly burdens on the high level of support we all need,no one shoud mess with nature and any possible future curing shoud be only ever decided by someone who has the mental capacity to make the decision for themselves and that woud only be covering the high functioning spectrum-not us, we cant even get general anaesthetics or more/new medications without a multi disciplinary team getting together and making a legaly binding 'best interest decision',the possibility of a future cure certainly wont work in the UK thankfuly.

we need a lot more funding for supporting the autistics who really need it,parents need to be taught to take advantage of outside help instead of doing it by themselves and building a mental image that LFA is equal to suffering, having a very good specialist support team behind us is part of what gives some of us a good quality of life.


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23 Apr 2014, 8:37 pm

Maybe I am oblivious to this but why a cure? What is society going to cure? To me a cure is for someone suffering from say a disease like cancer, heart problems, etc. To me something like Autism isn't something that is cured. It is the way you are born and your brain is wired. It is what makes you who you are. The whole concept of a cure totally eludes me in this context. To me a cure is something that is used for a sickness. I don't consider Autism a sickness. Perhaps my thinking is too black/white but I just don't see something like a cure being applicable. Cure me from being me? It makes no sense to me at all. :?



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23 Apr 2014, 10:37 pm

My biggest problem with the cure people is they portray us as helpless, hopeless, and pathetic unless we get a cure. Autism probably has many causes and aggravators - I believe there are certainly things that can be done for some symptoms, but many of us like the way we are. I don't want a cure and I don't want to be represented as needing a cure.



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24 Apr 2014, 4:02 am

you go to other parts of the world and you don't really see as many curists as america has.



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24 Apr 2014, 9:24 am

I don't believe in a "cure." I believe in an alleviation of plainly negative symptoms, especially those which hurt selves and others.



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24 Apr 2014, 9:45 am

exactly. to help autistic kids not to hurt themselves is not curing them, it's just teaching them. a "Cure" would be to get rid of everything there is about autism, both good and bad.



Teyverus
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24 Apr 2014, 10:26 am

Cis, I understand the argument you are presenting. I believe the problem you are facing is you are defining "cure" by its little used definition, which the medical field has had confusion before. The definition you wish to use has actually switched to the phrase "clinical cure." That means treatments to alleviate symptoms. Theyare using the classical medical definition meaning to remove the cause of underlying symptoms. You may wish to double check words and wordings before you use them, as I have come into habit of doing.

As for your actual post, to assume Cure or Anti-Cure is against treatment to alleviate symptoms is moronic. It seems to me both sides are attaching their prejudice of the other side to everything they say. As an advocate, I would assume you have noticed this, and would have tried to separate yourself and those to which you speak from that unneeded baggage.

Once you've done that, you should notice the other side may have a point to how they believe. Your demonized Anti-Cure people may be afraid to have things like pre-natal testing for the simple fact it WILL be used to abort autistics. You yourself have said it is possible even if that is not what the test is supposed to be used for. To make a compelling argument, you must find a way to address this, not just washing your hands of it. I'd advise looking into Down Syndrome; they have a pre-natal test, and 67% of fetuses are aborted due to the knowledge the test brings. Research into how this is not nearer to 100%. You may find your answer there.

And lastly, it doesn't matter how neutral you choose your words (which they really are not), by dismissing others' opinions you are adding that emotional baggage to your carefully crafted words. Try at the very least acknowledging that you paid attention to the other person's opinion as opposed to just skimming over it as it is not yours, thus it is unimportant.

To recap:
1. Be very careful of your wording.
2. Bothering to learn the other side of your beliefs will not only teach you more about your own side, but help you argue your point.
3. Understand that you cannot change anyone's opinion if they don't wish it to be changed.



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24 Apr 2014, 12:19 pm

TeaEarlGreyHot wrote:
I would much rather see more effective therapies developed to help individuals with ASD cope with day to day life.


Me too. I totally agree.