Wednesday, May 4, 2011

Talk of a cure

I'm not so eloquent tonight (by the way, I just had this all typed out, and my twerp of a computer deleted it, not to be found with control + z. If it does it again, I'm giving up.). I had Star (MH case manager) for an hour this afternoon. Then, I drove for 45 minutes, including on the highway, down to the Pitt study. Did computer work which boggled my brains. Then sat through a long, boring group, which I mostly spent spinning in my chair. Then drove back home in traffic. So, that, my friends, is how you get "done."

But something's bothering me. I have a secret. I thought maybe you'd want to know.

In my online world (which, I hate to say, is far richer than my "real" world), I am once again faced with a dichotomy in the autism community.

Camp A, mostly parents of so-called "low functioning" children, is all about curing autism.

Camp B, mostly the "Aspies," as I call them, is all about neurodiversity. Some even claim that Asperger's is the next step in human evolution... yeah; no comment there.

I've long preached to each his own, but I have a confession to make: I kind of bristle when talk of a cure comes up.

First of all, I'm not as so-called (I refuse to use such terms without a qualifier of some kind) "high functioning" as a lot of the "don't touch me with your cure" people are who are out there. I have been lurking and posting around Wrongplanet again, and I hate to say it, but there is just no comparison between the lives most of those people describe and the one that I lead.

I mean, I lose my words with almost daily frequency. I rock, even in public. I bang my head, I bite my hands, I have ugly meltdowns. If in a spinny chair, I spin and spin and spin. I stim verbally with my repeated phrases, though oddly enough that is confined to my apartment. At this point, I can't go just about anywhere without my mom or staff. Not even to stop for gas.

And yet, I repeat: Cure ignorance, not autism.

By saying that autism needs to be cured, you are telling me that a very, very fundamental part of who I am needs to be eradicated. And what would be left? You could not cure the autism and expect to have anything left. Kill autism, kill me.

That said, I know I need a lot of help, and I know that that translates into that I cost a lot of money, made even worse because I know that I'm not working... and, well, I struggle with all of that. And that is why I seek treatment, therapy, ABA, community inclusion, all of that good stuff. So that maybe, someday, I will be able to work.

So, yes, by all means, supplement, treat, build, ameliorate... but eradicate? To what end, I ask?

Far be it from me, or from anyone, to tell any parent that his or her child should not be cured. That's not up to me, and I will not tell anyone else what I think they should do. I don't like it one bit when others try to push their beliefs on me, so I'm not about to do it to anyone else.

But me? No thanks. Cure ignorance, not autism.


  1. I don't think it has to be to one extreme or the other, myself. I wouldn't mind improving or curing some of my symptoms, but certainly not all. I'm somewhere in the middle of the cure and no cure camps. And I think it also really depends on the person and what they want, as you have said. Basically I agree with you.

  2. I'm with you. Even on my worst days, I know in my heart that this is something that's impossible to take away from me, and still have me left.

    Some days I wish it were easier. For a lot of kids and families, I wish it were a lot easier.

    But I think people should take a really good look at the law of unintended consequences before they talk about eradicating autism.

  3. I love that : Cure ignorance, not autism. I find myself cringing at the whole "cure autism" thing these days. A LOT of groups out there are throwing that word around and comparing autism to cancer. I hope we move on from that mentality. I want to help my kids (they both have autism), and I have begun to realize that making them feel good about who they are, the way they are (just like you'd do with any child or person) is the best thing I can do for them. It's all about respect and letting people with autism have a voice of their own and grow into who they are supposed to be:) Thanks Lydia!