Tag Archives: cure

Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Filed under opinion, that's not helping

Cure vs. Treatment

Image by the fabulous explodingdog.

A few weeks ago I got a very interesting comment on one of my blog posts.

“I just stumbled across your site. I have a 5 year old with autism who was diagnosed when he was 4. I mean no disrespect, but I find the “anti-cure” mentality to be quite common among aspies. Everyone’s autism journey is different. If we had sat back and done nothing for our son, he would still be non verbal, completely unable to make friends. No he is super talkative and loves other kids. He still struggles, but wanting him to overcome as much as he can, “cure” him, if you will, is not a negative or horrible thing to do. I could go on and on about how much brighter his future looks, but it will really hurts to see so many high functioning ASDers look down upon those of us who are trying to help our kids. He will never be “typical,” but that doesn’t mean we shouldn’t try and give him the best shot at life. I wish you the best.”

Now, I have seen a few hints around of this concept some people seem to have – that not being in favor of a “cure” mentality must mean not being in favor of treatment at all – but it’s the first time I ran into it personally. I figured it deserves a blog post of its own.

First, though, I want to make it VERY clear. I am, in fact, completely in favor of therapy, OT, treatment, accommodation, and anything else that might help a person on the spectrum. I am very much against “sitting back and doing nothing” and I view it as very important to give people on the spectrum, regardless of age, as much help as they need. I myself have been in therapy specifically for my aspergers, and the only reason I am not still doing therapy is due to some financial issues. Once they get straightened out, I fully intend to start it back up again.

Ok, with that out of the way, I am going to ramble away a bit here about cure vs. treatment and my thoughts on the matter. First of all, I see “cure” and “treatment” as two entirely different things. Treatment/therapy is, to me, about learning to get around or mitigate the difficulties that ASDs have, while also learning what one’s strengths are and how to use them to the best of one’s ability. I view it as very important for treatment to include both. Cure, on the other hand, is about getting rid of the ASD entirely. As I’ve mentioned before, I see my Aspergers as being both a strength and a weakness – yes, it does give me many challenges, but it also gives me awesome things as well. “Curing” me of it would involve the loss of those strengths and interesting things that make me who I am. The thought of it is abhorrent.

I do, however, sometimes find myself wondering how my life would have been if I had grown up in a time when Aspergers was known, if I had been diagnosed as a child and gotten the early intervention that I see so many people talking about. I actually rather envy children now, and am glad that they are going to have a kind of help that I was never able to have, while at the same time I hope that their therapy isn’t simply a way to force them to be normal.

Which is to say, I do not think treatment should be used as a way to normalize an aspie or autistic person. For instance, hand flapping. It doesn’t hurt anyone, and there is no good reason to force a person to not do that anymore. Trying to make “quiet hands” is just a way to make us look normal, and I am offended by that. Focusing on real issues, on the other hand, like sensory problems and social stories etc, is something I find useful and good and wish I had had as a child.

Much of this also comes from how I conceptualize my Aspergers. While it does not solely define me – any more than oxygen solely defines water – it does permeate me. It is there in all my aspects of self, making me who I am. You cannot take it out of me and leave me whole any more than you can take the oxygen out of water and have it stay water. Again, to be totally clear, I am not trying to say that autism does not cause problems. It does. I have definitely struggled with those problems throughout my life. It is that it is not ONLY a series of problems stuck on to me. It’s a huge aspect of who I am.

Now, something else I need to make clear – not everyone on the spectrum views themselves the way I view myself. I cannot, and do not, speak for everyone. I speak for myself, and hope that maybe a few people find value in what I say. For instance, in this video Carly Fleischmann’s father says that Carly (a teenage autistic girl who cannot speak but can type) sees herself as “a normal child locked in a body that does things that she has no control over.” (6:50) (I have looked for a source directly from Carly, but have yet to find one. That said, I have not read her book, so it’s quite possible one exists)

I am not much like Carly. She struggles with more things in different ways and to greater degrees than I do. That said, I have never, ever, felt like I was a normal person trapped behind or within something that was keeping me different. I felt different all the way through. It is something I have struggled with, mourned for, and vainly tried to change – it’s honestly only fairly recently that I have been working to celebrate who and what I am, despite my challenges. However, that feeling of being different definitely informs my view of being on the spectrum, my view of myself, and my view of what a “cure” would really mean.

Among the many things autistic children are helped with, I find myself really hoping there is also an aspect of self-acceptance there as well. Of knowing that it isn’t all about being normal, but about being who you are in the very best way you can. I can see no way to accept and rejoice in myself if I see my Aspergers as a sickness or disease that needs to be cured, because it is too much a part of me. It would mean *I* am a sickness or disease that needs to be cured. I am a person, challenges, abilities, and all. So yes, please help me. But don’t get rid of me.

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Miracle Mineral Solution

So there’s a new health quackery making the rounds.  Maybe you’ve heard of it – Miracle Mineral Solution, or MMS.

It has been touted as a cure for all sorts of things (“AIDS, hepatitis A,B and C, malaria, herpes, TB, most cancer and many more of mankind’s worse diseases”) but now AutismOne has helped them add a new thing to the list – autism.

To put it simply, MMS is bleach.  Industrial bleach that they are telling you to administer orally, or bathe in, or put in your eyes or ears, or administer as an enema to your autistic child in order to “cure” them.  They claim that because MMS has disinfectant properties and the same chemicals can be used to disinfect water, it can also somehow eliminate pathogens from your body and cure you of what ails you, whatever that happens to be.  Or cure your autistic child – and perpetuating this on children is far worse than doing it to yourself (which is really quite bad enough).

To put it less simply, it’s a 28% sodium chlorite solution which the user is supposed to activate by mixing it with something acidic like orange juice or vinegar.  Once that is done, it causes a chemical reaction changing the sodium chlorite to chlorine dioxide.  Chlorine dioxide is an industrial bleaching agent.

Not surprisingly, use of this stuff tends to cause vomiting and diarrhea.  What probably should be surprising but isn’t is that proponents of MMS claim that vomiting and diarrhea are signs that it’s working.  Other people have gone over the scientific aspects of its problems far better than I could, so I simply invite you to read what they have written if you are curious – though admittedly, I would hope that “bleach enema” would be enough for anyone to stay away from the stuff.

Also, if you are interested, there is a petition on change.org urging a ban on MMS as a curative agent (it obviously still has industrial uses).

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Filed under rant