xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Let's talk some more about cookies

Saturday, March 31, 2012

Let's talk some more about cookies

Recently I have found myself (voluntarily) in the middle of cyber arguments taking place between autism parents and autistic self advocates. These discussions are always so full of emotion and pain, rarely does anybody come away from them with a good feeling.

I'm bothered by this. I really am. If you've read anything I've commented on recently and you've taken issue with things that I've said, this may come as a surprise to you, but the truth is that I don't like it. I don't like this divisiveness. I don't like that we're split into 2 separate groups. I don't like that we fight with each other; that we don't or can't understand each other.

I like to say that I have an over-developed sense of empathy; I'm not just really good at seeing the issues from all points of view, I sometimes trip myself up trying to explain things because I try to say things in a way that everybody will be okay with. That doesn't always work, I know, and often I'm having to backpedal my words. Oftentimes a lot of what I say ends up not making sense or I simply don't explain myself well enough, and when that happens I just quit the whole thing and I leave feeling frustrated. Good thing I have this blog, right??

I asked my sister-friend Dawn for help when I was writing this. I'm not a writer and I was having trouble with the words, and she's always been awesome about helping me with these things. She said "Maybe the 'problem' is that you are expressing YOUR feelings--which are neurotypical--in an autistic world. You will always be on the outside, no matter how hard you advocate, no matter how hard you empathize. It's like the role of the Jewish activists in the civil rights movement. As much as they wanted to help, it wasn’t REALLY about them, and they were never 100% accepted into the movement. And this stage of your growth--why the comments and arguments bug you-- is because you are beginning to understand that." I think she's right.

I am now 7+ years into this autism journey and I've come a long way in that time. That by no means makes me a veteran, but I'm through the beginning stages. I've done my grieving; yes, I grieved. I grieved, and I raged (oh yes. I raged), and I was filled with pure terror for weeks and months at a time. I had days of extreme "self pitying" lows, extreme "worrying about my kid" lows, extreme panic about the future, and all those goddamn what ifs and what ifs and what ifs again. Why did this happen? What did I do wrong? Is this my fault??? I ate tuna when I was pregnant. He got all of his shots. What should I have done differently? Why did this happen to him? To me?

But I'm past that now, and am firmly entrenched in acceptance, education, and support. When I come to these discussions, I do it not from my own place of emotion, but from remembering what that place was like, and being able to have a clear head and (attempt to) articulate what that feels like.

In the interest of full disclosure, my personal experience with autism, particularly the past 3-4 years, has not been all that difficult. My son is an absolute joy. We do not experience any of the behavioral issues that other parents face, at this point he has very few sensory issues that affect his daily life (I'm not talking about school, that's a whole other ball game) he is not rigid, he is not inflexible, he deals with change very easily. He's got tons of quirks and stims, and his expressive language skills cause him, and me, a great deal of difficulty and frustration, but that's okay; we deal with things as they come and we all love each other very much.

At the most I can be accused of worrying too much, which I completely accept. I know that he is very sensitive to my moods and I know that I worry too goddamn much. I know that I project my own fears about his happiness and well being onto him and that he doesn't care about these things nearly as much as I do. I also know that my overprotectiveness is not beneficial to his emotional well being, and I try hard to keep it to myself.

So, there's my full disclosure. Hopefully this will help people better understand where I'm coming from, because what I want is to create some productive discussion between us all. I want to fix this. I'm not nearly self centered enough to think that I and my itty bitty blog can actually change the public discourse, but I do think that I can offer a place where these discussions can happen, and so I'm going to try. There shouldn't be two different groups fighting each other: we should be one group, working together.

I keep going back to the guest post that Rachel Cohen-Rottenberg wrote for me a year ago, called We Are Not the Enemy. In it she says "I am not your enemy. I am your ally, and I am your child's ally. Now and always." So, I guess I'm writing this now to tell the autistic people who are reading this that I, too, am not your enemy. I am not afraid of autism; I do not hate autism, and I can help bridge the gap between our two groups. I want to learn from you, and I want to stand beside you as you fight for your rights. You are my child's future and I want to help you as you make the world a better place for yourselves; and for him.