Another point of view that anti-cure "Aspies" must

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Do you honestly think this is a perspective we haven't heard before, and that somehow learning that there are autistic people who have trouble doing certain things will magically make us decide that a cure is a wonderful thing after all?

*yawn*

It seems like every so often someone comes on here and presents this point of view to us.

There's a lot they don't understand.

Whether a person wants a cure or not is not linked to severity of impairment in any area at all. It's linked to how the person sees the world, how they see themselves, how they view disability.

The disability rights movement that began rejecting cures as the ultimate goal was founded in part by people who drove powerchairs, needed help with every physical aspect of life, and in many cases had a reduced lifespan. Some of them wanted a cure but they began the idea that disabled people could reject cures if we wanted to, regardless of what impairment they had or how severe it was.

Personally I think cure is a personal choice. But unlike some people, I'm aware that the choice can have as much to do with how far a person has internalized a medical view of disability, rather than how much or how little a person is capable of doing. So sometimes it's less a choice than a matter of perspectives that are forced onto disabled people without us even always being aware of it.

So my view is very different from the "rah rah we don't want a cure because we don't really have any significant impairments" crap that people spew sometimes. Almost as different from that as it is from the idea of a cure in the first place. The problem is that first off, people are not normally exposed to the sort of point of view I have (since most people are only exposed to the status quo), and second off, even if people have been exposed to my point of view, it's much harder to argue against than the "autistic people don't need a cure because we can all get on just fine without a cure and without services" thing. So open mouth, insert strawman. Yay.

Also, the person who said that people who get classified as low functioning just have an additional cognitive issue is dead wrong. At least, if that is true, it is far from universal. Not that there'd be anything wrong with having an additional cognitive issue (and many people with mental retardation don't want to be cured, which would be a shock to some people here too given how much they value their precious IQ scores). But it's just not true. I co-presented recently with a boy who had a tested IQ in either the severe or profound range, because at the time he was tested he had incredibly unclear speech (sounds like squealing to the untrained ear) and no other communication system. He is still just as autistic now as he was then, and reads as "low functioning" to people, and still has a problem doing a lot of things, but now he types on an iPod and makes movies on his laptop that have been shown at film festivals, and has graduated high school at the age of 13. Clearly that wasn't the issue. The reality is that the divisions of high and low functioning are not actually accurate even on a scientific level (our presentation was about the science and ethics and history of rating autistic people from low to high -- two of us were autistic people who have at times been referred to as low functioning, and one was a scientist who has done a lot of important critiques of standard studies of autism). So there's really not a "type" of people who get classified as low functioning, it's based on a small number of superficial traits, rather than a view of the person's whole abilities.

Additionally, learning to do things is not the same as having a cure. The boy learned to type and he is not cured. I learned to nearly stop self-injuring (which at one point in my life happened almost constantly and in a severe manner) and I am not cured. People confuse the two and they're not the same at all: You can hope for an improvement in some particular area without hoping for a cure. It is possible. Really.

Additionally, because I have an autism-related condition that ensures that my ability to do things usually considered "independent" (a topic for another post) has gotten gradually lesser every year. I have a vested interest in finding ways to improve autistic people's lives even if we can't do all these things that people believe are essential for happiness. I also have a vested interest in making the world a better place for people who can't measure up to the standard of "high functioning" (whatever that standard is, of course, changes daily). But beyond my vested interest it just seems like the right thing to focus on. Because focusing on finding cures for everything only tends to benefit one kind of disabled person at a time. Finding ways to make the world less oppressive to disabled people helps all of us. I'm more interested in helping all of us than I am in either being an elitist who believes that disabled people are lesser or tragic, or an elitist who believes that some of us are better than others. I want to work to make the world better for all of us because any other course of action seems to miss the point entirely. There will always be disabled people and there will never be cures for us all. I have no patience for people who search for a cure so their kid won't be in an institution but fail to do anything at all to stop institutions from existing. If you stop institutions from existing and replace them with something better then nobody has to deal with them whether they are cured or not. (There is nothing good in institutions that can't be done without them.)

But nobody really addresses things from this viewpoint. They just go "Well that's obviously not true because..." and then they state some tired disability stereotype. Because "obvious" to most people is the status quo. On the other hand I have no interest in preserving the status quo because the status quo mostly benefits people who are nondisabled, white, male, straight, cisgendered, and rich or upper middle class. Most of the people I know aren't many of those things, some aren't any of them. The people I care about have a right to exist in the world and that means changing the status quo, not defending it. But every argument I hear on the order of "You shouldn't oppose cures because..." ends with some reassertion of the status quo, in the belief that this will somehow convince people who have long gone beyond the regular stock opinion that nearly everyone has about disability.

I appreciate this post. I've seen this differing uses of the word "cure", and mostly when I've commented, since I'm pretty much talking to aspies/autistics, not parents of autistic children, I'm usually always saying something like "hey, they mean something different from when they talk about a cure". Like, calling for the people actually reading to show understanding. So, I appreciate you as a parent giving your perspective, and saying that you now get that cure and coping skills are different.

Good point Willard, I hadn't thought of that. Last I heard, researchers looking for an autistic gene have been saying that there is not one single autistic gene, but several. Which is kind of like saying that you can choose to damage any number of parts in your car's engine in order to make it not run right.



Well, yes and no. Aspergers is a "Social Learning Disorder". Therefore, everyone is born socially inept, but NT's quickly learn social skills, while aspies do not. During the first 5 years of life, the brain possesses radical learning abilities. So yes, if the autistic genes are discovered and a gene therapy is perfected, the cause of the learning disability can be cured while it can still make a difference, but if it is applied to someone over 5 years old, it may have limited usefulness.

What I don't like are the people trying to push snake oil cures for autism. Youtube is full of idiot parents claiming to have cured their kids autism with B12 shots, gluten free diets, pulling out their teeth with mercury fillings and other such nonsense. I will never say that it would be impossible to cure AS, but if B12 cured their kid's "autism", more than likely, they never really had autism at all, just a B12 deficiency that mimicked autistic symptoms.

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Last edited by Mysty on 10 Jul 2010, 8:07 pm, edited 1 time in total.

Well I still don't think there should be a cure for autism.Even for the low-functionning kids.Again there's always another option.Beside,if there's a cure for autism, what tell you that it will only be used on low-functionnings?People might well decide to eliminate all form of autism because they are completly misinformed by the propaganda of Autism speaks.Plus,every children has the right to live,its not because your kid isn't like you want that it's not an human being anymore,he still have the right to live as much as you do.And seeing the governement view along with the one of the majority of the population toward autism,it wouldn't surprise me that they pass a law forcing us to be aborted or cured...

So this is my opinion on curing autism...

As far as the anti-cure folks, they pretty much exist everywhere. In the gay crowd, you'll see the same thing. Some gays say that they are just fine the way they are and don't want to be "cured". While others would welcome a cure because they despise being gay.

I personally want to be cured of AS if it would ever be possible. I have serious doubts as to whether it would actually benefit me though due to my age.

I have to wonder about all the no-cure folks. The disadvantages of autism is vast. As Willard pointed out, our intelligence is probably not related to our autism and if cured, we would still be smart, just then we would also be able to have a few friends and do other NT things. I'm guessing that the no-cure folks may have been told by their parents and teachers that "You ARE normal just different" - which is a load of politically correct bull.

I really hope you realize being gay is nowhere near the same thing as having a neurological impairment.

The line is wavier than you'd think. Not because being gay has to be neurological. But because who is and isn't disabled is decided by the powerful in society, and for a long time (and still in some places) being gay was considered an impairment in being straight. It was treated by psychiatry. Just as left-handedness used to be considered essentially a combination of physical and learning impairment. And in those times and places, gay and left-handed people are disabled because who is disabled is determined by who faces ableist oppression, not by some sort of objective guidelines, and not by who is and isn't "defective" or somesuch.

Note that I'm a lesbian, and I far from agree with pathologizing being gay. But there's nothing special about being gay, that differentiates it from other differences that people are pathologized and disabled (dis-enabled, see social model definition of disability for one that is similar to how I use it) for. What happens is that various human differences are considered pathological, and which ones are considered pathological and which aren't, changes depending on society, culture, and time period. And being considered pathological, and treated in such a way, is part of what defines who is considered disabled at any given time. Having six fingers means you're disabled in some cultures even though it doesn't in modern mainstream Western culture. Even though it doesn't necessarily result in what we in Western culture would call impairment, and can even cause advantages relative to five-fingered people. But in many parts of Western culture and other cultures, having prominent facial "disfigurement" is considered the same as being disabled even when it causes none of what people (if they thought about it) would consider impairment.

So it's not that there's this category of "these things are objectively impairments" and "these things are not". It's more like there's a category of "things that are medicalized/pathologized and that mean that you will experience certain particular kinds of oppression for," and "things you don't". And which things are in which category (and which things are regarded as causing impairment) varies a lot across time and culture.

Thank you, anbuend. I'm so sick of the "I don't want a cure because I'm high-functioning/not disabled" argument. It's got nothing to do with that. It's got to do with the fact that disability is almost always judged to be a bad thing; that the presence of disability is considered to be an indication that your number one goal should be the removal of disability; and that people have forgotten that human rights apply to everyone, no matter how disabled they are.

Take the typical mild-AS/autism case--the person who doesn't need outside help, and just takes more effort to do things that NTs can do. That person is impaired compared to NTs. If you judge impairment to be bad, then all you're saying is, "I don't need a cure because I'm less impaired than [stereotypical low-functioning label]." But you're still seen as more impaired than the norm, and that means that your argument's automatically invalid to anybody who holds the position that impairment is bad.

If you don't dump the idea that impairment is intrinsically bad, then you're playing right into their hands. You see a non-verbal guy as worse off than you. The biased NTs see you as worse off than them. If you think the non-verbal guy needs a cure, then the NT from his perspective will think you need a cure--by the exact same argument you're using to say the non-verbal guy needs one--except that the biased NT is in the majority and can use society's pre-established attitudes about disability to force you to get "treatment". The only difference between you and the non-verbal guy you're looking down your nose at is that he's more vulnerable because they feel more justified in drugging him and dragging him to the mental ward.

Universal human rights are universal, and they include the right not to have your brain messed with and your way of thinking and processing information judged to be unacceptable.

I say this to the author of that article:

You may say Alex Plank doesn't speak for your child. But do you? How do you know that he wants to be cured? If he does, it's only because you've told him to. If you loved him, you could accept him for who he is, rather than viewing him as a problem to be fixed with drugs. Furthermore, you say he can't be autistic because of the things he has achieved, and how he has learned to cope. So what you're really saying is that if you're autistic, you can never achieve anything?

Anbuend wrote:

Do you teach somewhere? Everything you've written in this thread is so brilliant and thought provoking.... I don't have anything to add.

Just want to give you props... and thank you for the words of wisdom.

I'm exhausted and it's very late here, but I'd like to try to form my thoughts on this as coherently as possible.

Well, even if it's considered to be a disability to have six fingers, doesn't mean that it actually is one. Someone with six fingers can still do all of the required daily tasks. They can still communicate with others. They can live without any assistance. People with social impairment cannot, because we need to communicate and exchange between each other in order to survive. A human being cannot do everything on their own. While it's true that back in the farming age, someone could theoretically grow their own food and have a place to live without having to communicate with anyone, with the increased amount of people living on Earth today, the majority of the population in developed countries lives in urban centres where communication is inevitable in order to survive.
A better example of the relativity of disability would be learning disabilities. If one were not required to master the written word in order to obtain the educational status necessary to get a decent job, there would be no such thing as dyslexia.

The article mentioned in the OP is what had inspired me to make this thread: http://www.wrongplanet.net/postp2900614 ... t=#2900614
I do disagree with how it says that only the most NT-like autistics oppose a cure, as I've seen a severely autistic person here post about strongly opposing a cure. However, it raises an interesting question about the level of impairment beyond which one should be considered to have a disability. While I was at Autreat, I've met a couple of people who apparently have been diagnosed with Asperger's, but their communication skills (as well as processing skills) seemed to be completely unimpaired. I saw them more as gifted as opposed to autistic. And while they may possess a few autistic-like traits, I am convinced that they are NOT fully on the spectrum.

I could careless about the lack of eye contact and under standing of social cues I just want to be able to touch someone and to be touched by someone without feeling extreme anxiety. I do not want to die alone. I do not care if the cure comes along when I am 50 or 60 as long as it comes before I am too old to love or be loved.

Sometimes communication isn't the most strongly affected. Sometimes it presents more as sensory-integration problems, special interests, need for routine, executive dysfunction, lack of social reciprocity... There are more symptoms than just odd language. Plus--the impression you got of "giftedness"? Most likely comes from their use of very precise language to cover for impairment in non-verbal and connotative language. Lots of Aspies compensate that way; I'm one of them. You're falling into the HF/LF stereotype--assuming that if someone "looks unimpaired", they actually are. But all you can see of them is what they're doing right then--not how they cope all day; how they cope at home, how quickly they get tired out or overloaded, how they handle stress... For all you know, they are going home after being utterly stressed out by the required socialization, and lining up paper clips in neat rows for four hours afterward just so their brains will get back in gear and they can remember that they haven't eaten all day and really should get dinner.

Disability is defined by society. We don't call it disability when an elderly person is unable to run because of arthritis--but we do call it disability when someone who is in their twenties has those exact same traits. That is because society is set up in a way that allows those traits in elderly people, but not in twenty-somethings. (Both people are "impaired"; only the twenty-something is "disabled"--at least in most societies.) Disability is basically a gap between what you can do and what people expect that someone of your age, sex, and social position should be able to do. If they don't expect you to be able to do it, then there will be parts of society that are set up to accommodate that inability. For example, most people cannot fix their own toilets; so society provides an accommodation in the form of specialized workers called "plumbers" who can do this task for you.

So true. I sometimes get so nervous before a "required" socialization that I can't eat anything all day. But instead of lining up paper clips after that, I usually go to an online library and download books in alphabetical order (without really intending to read them) and make backups of them.

NTs have even less right to talk in the name of absolutely any autistics, let alone the low-functioning ones.