Time to stand up against anti-cure

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I wrote about this on my blog.

HERE

As an additional factor, all autistics from the profoundly disabled to the outstandingly gifted are tossed into the same diagnostic bucket. With such diversity, no one-size-fits-all approach will work. The cure folks tend to be myopically fixed on the non-functional group and end up implicitly representing all of us as profoundly disabled. Honestly, I think the cure folks are predominately closed to the concept of diversity within autism.

At some point, asking autistics to be cured is like asking Africans to wash the black off their faces.

well said my friend

Skipping multiple pages of dialogue that surely have already included all these points:

1. The issue isn't people seeking cures for themselves, it is parents seeking cures for their children, without considering whether or not the children would have wanted them, and sending the message to the child that the child is somehow "less" by being ASD (for why would you cure something if it was already perfect?). As we know now, even non-verbal children are often much more aware than parents realize.
2. There also a very real possibility that the only way to "cure" ASD will be prenatal testing and a choice not to give birth; that idea is rightfully frightening to the community. Who wants to discover that parents would rather a child not exist than be like them? Will our world really be better if there are more abortions and less ASD births?
3. Extremism on both sides is inappropriate. Cures and treatments should be available for those who desire and want them, but the message should not be that a person is damaged or sick without them; as if not being ASD is always better than being ASD. Many with ASD are quite happy with who they are, appreciating the gifts ASD brings and not being too upset about the burdens. If you treat the burdens, you are likely to also remove the gifts; they come from the same place; and it is important to understand that balance. That should be someone's individual choice, and it should be respected.
4. However, once treatment and "cure" are available, will society accept someone who chooses not to use them? I think there is a lot of fear that the answer will be no. Already it is very difficult for parents to hold out against medicating their children, and very difficult for a pregnant woman of a certain age to forgo testing for Downs. Along with cures and treatments tends to be momentum requiring their use, when it remains extremely important that we continue to honor ASD as a difference someone should be allowed to retain.
5. I am not in the least opposed to studying the issue and figuring out what is going on, and how to treat it. But the anti-cure voices are extremely important, because without them many of the fears listed above are highly likely to come to pass.

I agree with everything said. And it was very well written

There is nothing wrong with not wanting to have AS or ASD or whatever it's called now. I have it and I wish I didn't have it. It is not a gift, it's a big ole ball and chain attached to my leg that I have to run a marathon with. Now, some people's weight ball is bigger than others so they can't run, but some have one they can run with if they are made to try to. I had to be made to try to, but then again that was before we knew I had it on me and it was in vogue to say "Don't run the marathon! Make them bring you the first place prize just for being here!"

I'm sick, sick, SICK of people who want everything to just fold up and cave in to them. BTW, I'd LOVE the world to do that to me, but you know what? It WONT. It won't for me, for you, for your kid, for their kid, for some mother of 12 who works 5 jobs to feed them in a cardboard house even. It just WONT. We live in REALITY. There are people who don't have our problem out there who can't even survive, so why should we get some kind of special treatment cause we have what we have? We SHOULDNT. You know who might should though? People with incurable cancer or even curable cancer who cant afford treatment. People with things that make them DIE but not right away. That mermaid kid with the legs fused together. Siamese twins even. Ever think about them? Maybe they have a f*****g worse life than you do. Maybe their parents have it worse than you do. Maybe somebody out there has it worse than you do because you can't make small talk or remember to shower or whatever. You aren't about to DIE from this. You have a chance but you choose not to take it because you are so AFRAID that somebody might get UPSET with you and then OMG UPSET YOU!

Yes, I have it too. Yes, I feel the same things you do when faced with that kind of BS. But you know what? I found out that it won't kill me to actually live. You want to give up and live in the basement in a room that's lit by the eerie blue light of computers all day and worry about if your spoon is clean at dinner time, then go for it. But don't expect the world to run to you with open arms. They didn't me and they won't you. Ever. No matter how many people type on the internet or write letters, it won't change s**t. Do those people go out there and interact with others? Like other people? Besides Alex? Who knows. Who knows whats real and what isn't from here anyway.

I would not want my kids to ever go through what I went through learning to just deal with the world. I'd give them shots, pills, whatever I could to help them not do that. And if it bothers Miss Autistic July or whatever that I wouldn't then so the f**k what? Cause there ain't no Miss Autistic July anyway. Me saying I'd want my kids fixed doesn't mean I don't want you, or you, or you, or your kid or your kid, or any f*****g body else, here. It means I'd want my kid not to have to go through what I went through.

OK, here's something. Remember the Great Depression? It was horrible from what I hear and it had an impact on everyone who grew up in it's lives. However they got through it (yes, I know, some didn't) and they tried to instill something in their kids to keep them from having to go through what they went through. Now, was that bad? NO! None of them were saying "poor people shouldn't live" or started some crazy paranoid ass genocide program against the poor. They just tried to keep their kids from GOING THROUGH WHAT THEY WENT THROUGH. Now, NT parents just want want to help and protect their kids they say. But they don't get what the kid is going through. I do. Ya'll do. I ran the f*****g gauntlet and I survived and got stronger and made it. Some of us can. And those who can, should. We should all try. Those who can't should be helped out by those of us who can and did. And we should accept that some can't and help them in whatever way they want to be helped after they try. But you know what? Not a Goddamned one of us is 4F from trying to live the life we could. Trying is all thats important.

And if we could try without the ball and chain around our leg, it would be great. Those who want to make the ball and chain their excuse and who want to shackle the rest of the world to us because we can't run that fast just give us a bad name. I'll gladly job behind the rest of the runners, either way I still finish the race.

what you have to understand is that just because you're on the spectrum doesn't equal people mistreating you. if you went through a hard time, it was just as likely people not treating you right.

and that if you get "rid" of your autism, your problems don't magically go away.

Autism isn't a disease, though. Without it, we would probably be completely different people. It's literally part of what makes us who we are.

I support a "cure" or treatment for the more disabling effects of autism, especially low functioning. However, I would only support that if it was known that taking away the "bad" parts didn't mess up the "good parts", and/or the person receiving treatment wanted it. I do recognize some people do NOT see this as a gift, and it's valid. Sometimes, there is way too much optimism for such a varied and individual "issue".

The problem I have is that people have been trying to cure things like mental illness for a long time. It took decades of torturing all of those poor people to get modern psych meds, and even then, they are often misused to chemically restrain people. Even today, there are some people that would like to bring back certain messed up "treatments" that don't work and just torture the vulnerable. I take issue with the idea of superiority of a certain people, and the willingness to hurt someone to get to the magical "normal" place that doesn't exist. Make no mistake, there are plenty of unethical doctors and scientists out there.

I have this radical idea that we should try accepting people. The idea that parents would want a child to have a horrible disease rather than autism sickens me. I see this everywhere. While she is a pretty bad person, my own mother asked about my husband and I, and told me we shouldn't have biological children because of the potential of autism. I don't feel great when people want to eradicate me. Essentially, the people who advocate cures want to rewire my brain and make me a "normal", compliant, completely different version of myself.

Yes.. by the dictionary definition of disease... it IS, in fact, a disease... stating that it is not does not change the definition.

I wrote about this topic HERE

Why would somebody want a cure? There are much more benefits with special treatment. (Sarcasm)



Seriously: A cure for sensory disintegration will have more pros than cons. A "cure" for improving socialization is not ethical and should not be the priority.

A cure might not be a pharmacologic agent: an electronic "sensory filter" is more realistic in the short term.

Considering that some manifestations of autism are not a disability implies that they should not have any type of support (besides the "typical"support).

You put my thoughts into words!

Thank you

In the medical world, a lot of doctors differentiate a disorder from a disease. Although it's true there is no "rule" about it, doctors often refer to something as a "disorder" when it's a malfunctioning with your own body. In not so kind words, autism would be considered a "flaw" in your body functioning. In this case, it would be brain functioning.

If you want to get technical, the CDC considers autism a "disorder". Yet, based upon the dictionary, you could label autism as a "disease". OK, so why don't we? I read your link. Even being objective, the problem is how people view disease vs disorder. When you say the word disease, what words often come to mind?

Contagious
Abnormal
Wrong
Cure

As accurate as those words may be for some medical problems, those tend to be emotionally charged words that induce panic in the general public. By calling something a disorder, you still acknowledge the validity of the problem, but have less expectations of it. Sure, there are plenty of medical conditions that don't have cures (at least at this moment), yet the word "disease" leads people to assume there is a cure. By calling something a disorder, especially psychological and/or neurological problems, we change the expectations that people afflicted with them need to be cured of their problem, and work on minimizing symptoms instead. This also happens with certain diseases that can't be cured (or even ones that can be cured). The goal of medicine is often to reduce and/or relieve symptoms. Yet, the public still does not understand this.

There is also the issue of how a disease is TREATED in the medical community. The label of disease often means getting treated with pharmaceuticals as opposed to other, more helpful steps. By labeling something as a disorder, it can often mean the difference between just getting a few pills vs getting social skills classes.

Again, this comes down to how people view disease. To them, disease=cure. A disease "must" be able to be helped with pharmaceuticals according to a rather large number of humans. This is why labeling something like depression as a disease makes people want to treat it with anti-depressants first instead of talking to the person as a human and listening to them.

Last edited by bleh12345 on 28 Apr 2014, 6:26 pm, edited 2 times in total.

neobluex, you touch upon another issue: ethics. While scientists can and will invent a lot of different items and treatments, we have to keep in mind ethical considerations. Science by itself is not bad or good. However, that science can be applied in very bad ways. For example, an ethical scientist would not study how trauma effects the brains of children by purposely inflicting the trauma. As easy as it may seem to set up those experiments, they are highly unethical.

I believe, in the context of autism, use of the term "disease" has been obsoleted by "disorder." In this case, progress is reflected in the choice of preferred terminology.