Time to stand up against anti-cure

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But how do we go about changing the mentality of 98% of the population? I am an NT and I can only think like an NT. As an NT I may have a bit more mental flexibility in trying to understand or empathize with a person on the spectrum, but even on this board I have a difficult time understanding some of the posters, even after reading and re-reading their posts. My NT logic simply isn't the same as their Aspie logic. As a mater of fact, my NT logic doesn't always click with other NTs when it comes to certain subjects.

NTs are hardwired in their thought processes just as people with Autism are hardwired in their thought processes., so I'm trying to understand what it is that NTs are expected to do to accommodate people on the spectrum.

If the mainstream dialogue about cure was about treatment - speech therapy, social skills classes, motor skills training and all that - I think that most people in both the current "anti-cure" and "pro-cure" factions would be in agreement that this is a good thing. Very few people would be anti-cure if this was the widely-accepted definition of cure. Problem is, this is not how most people are defining cure. That's not what the conflict is actually about. Said conflict didn't start, the definition of cure that sparked it didn't originate, with the anti-cure, autistic pride advocates either. We're reacting. We're reacting to real people out there - and a significant number thereof at that - who are saying that their autistic children, and for that matter all of us and all like us that might exist in the future, should not continue to be as we are, or should never have existed. This isn't politics or propaganda that I'm making up or that has been made up by the autistic self-advocacy community. This is the message of the literature and the videos and the publicity campaigns put out by large organizations like Autism Speaks that effectively set and control the dialogue by virtue of their size and resources that allow them to do so. This is the wishes of many parents of people on the spectrum, expressed both through these organizations and independently. This is, in fact, the widespread, unspoken belief about people with disabilities in general, and not just autistics.

If you want to change the nature of the dialogue, and make it so that what people are calling cure and working towards is not prenatal testing and eugenic abortions, or risky quack treatments, or an elimination of vaccine use, or abusive forms of behavioral modification that force people into a narrow, rigid version of "normalcy," then I'm behind you. But don't blame us that are against the aforementioned measures for making that a difficult task. I wouldn't doubt that most people here and elsewhere calling themselves anti-cure would like nothing better than if all the people advocating for a cure were to use your definition of cure in what they did. You're attacking the problem from the wrong end by lashing out at us for fighting the fight that we've been forced into rather that one that doesn't actually exist.

I think damage is done to those of certain views for seeking attention certain ways. You will realize as time goes on how different people with autism are from one another based on type groups. The autism way of thinking for instances more often then not not exactly true but rather assumption. No one has been forced to be a pride advocate and not all pro-cure are saints. Yet cure comes from the premise many times it would seem of caring and some pride individuals seem to hate on that.

Personally I don't like the concept of pride for the most part.

I've scoured the internet looking at both sides of the cure/anti-cure debate, and I'm not seeing a significant number of people calling for the eradication of people with Autism. What I do see is a lot of alarmist vocabulary on the anti-cure side. I see a lot people using the words genocide, eugenics, extermination, etc... And if there is a voice on the net when it comes to this topic, the anti-cure voice is the loudest of all.

What I see on the cure side, is a lot of venom towards parents who are still vaccinating, and if you aren't doing the gf/cf diet then you don't love your child enough. This group is so cliquish and sanctimonious it's stomach churning.

I can't associate myself with either one of these groups, because they both seem to feel that they can assert their will over other people. If they have a message, the integrity of that message is lost in the vitriolic mudslinging. They can't seem to see past their own personal experience long enough to consider the experiences of others, or they simply can't be bothered trying to identify with another person. After a while it seems like it's not even about the Autism anymore, it seems like it's about the fight, the control, who can shout the loudest. I won't invest in any of that.

I don't react well to someone hitting me over the head with their soapbox. And I definitely don't react well to anyone who tries to tell me what choices I must make with regard to my child's health. I think there are a lot of parents who hang around the fringe for that very reason.

A style of anti-cause awareness such as anti-cure does not supersede in general the overall pursuit to the right of dignity as it may be the case even though remotely that some anti-cure is designed to make pro-dignity look bad. Likewise the right to cure is simply a right and is not superseded by the type of awareness that may be perceived as causing conflict that represents it's right. The bottom line is rights are intact regardless as to leaderships that represent these rights. It is a general rule of thumb that the right to dignity does not supersede the right to the pursuit of treatment research that seeks to enable cure.

Nathan Young

I agree that people can get too involved with the idea that their way is the ONLY way. Some of that probably comes from hope, from placebo effects, from having invested so much time and effort in their way, and from mistakenly thinking all people with autism are alike in their origins.

We can all agree that help - to accept and appreciate and assist people with autism - is a good goal.

The main problem then becomes - is the person with autism unhappy? Many are. There are reasons they have meltdowns, are frustrated and depressed (and not all of that is because of NTs not understanding and not helping). Much has to do with the autism itself - stress, communication difficulties, sensory differences, thinking differences, social problems, etc. Some of this can be helped with therapy, some can't.

The other problem? No one talks about it much - but who will take care of all the people on the spectrum? Whether happy or unhappy, most people with autism are unemployed and live off taxpayers or parents. Many people with autism, children or adults, need 24 hour care and assistance. Who is going to do that and pay for that?

Cures for the problems, great.
Cures to completely prevent autism? That is a different and horribly difficult question.

Yeah, to answer that question you'd have to define autism. If you alleviate the symptoms (mainly social and sensory) to the point where someone no longer qualifies for a diagnosis, what makes them autistic? Logical thinking? It seems to me that aspies who claim to be superior thinkers make some very basic mistakes in their reasoning. Narrow interests coupled with high IQ? NT's can be extremely gifted in a specific area. Does autism give someone an edge?

I know that there are different types of autistic people with different traits and challenges. I'm just not willing to throw so-called "lower functioning" people under the metaphorical bus and say that I and people like me deserve self-determination to choose or reject any hypothetical future cure and they only deserve to have other people decide what's in their best interests. I wouldn't want someone to do that to me, even symbolically and not personally, so I don't see why I should do it to someone else. It would be opportunistic and self-serving to do so. And also, just to let you know, the "you will realize as time goes on" thing is really condescending-sounding. Talk to me as an equal, not a child.

Some of the most harmful things done are those which are done with the best intentions, for someone's own good... people who care, but who can't differentiate what makes them uncomfortable about someone else's existence from what is actually uncomfortable for or alright by that other person. Not only does this cause people to do unnecessary and sometimes harmful things to others, but it also prevents them from being open to suggestions from the very people they're trying to help about what would actually make the situation better (e.g., forcibly exposing autistic children to overstimulating sensory experiences in order to try to desensitize them rather than taking steps to accommodate their sensory issues, or, to give a more extreme example, using aversive behavior modification techniques like contingent electric shock and long term restraint to deal with problematic behaviors instead of trying to address their root causes). This is why autistic (and disability, for that matter) pride exists, as I see it. It's making "normal" people - well-intentioned normal people who as far as they can tell do want the best for autistic people - to recognize that all attitudes that say our lives are inherently less fulfilling and incomplete by comparison to neurotypical lives, even those that are coming from concern rather than hatred, are a large part of the problem facing autistic people, and making them deal with us on our own terms instead of confusing their wants with ours. Autistic people need the help of others as much and sometimes more than neurotypical people do, but when the people providing the care are focusing on how to make us more like everyone else instead of, and at the expense of in some cases, how to help us to effectively live the lives we want to as ourselves, it's not always going to turn out so well for us, and in fact frequently won't.

I wonder why if someone disagrees the person they disagree with is automatically being somehow insulted like considered a child. To me it's a social technique to not argue the point but get ones way simply because they invented an insult that did not exist. Such as if I was to say to you your exaggerating and inventing because you think I am stupid not to know better.

I know you have emotions about what you say. It's just that in social advocacy I try to find a way to instead of accusing society, establishment and so on as the certain foe is to suggest on a more level social ground. The idea of behavioral modification I think was beginning to phase out in the 50's, where I live electric therapy in a program would be deemed abuse more then likely and specific laws protect against such things as well as preserve choice. Where you live and others that complain of alike things perhaps still are more so in the stone ages.

Normalization is often a choice of individuals. Such as the right to be included whereas another individual may choose more rigid circumstances. A cure should be better understood prior to a global assumption of the movement. You'd have to differentiate the good cure and bad cure because cure is a human right.

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.

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.

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.

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.

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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.

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.

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.