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.