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.

---

Black and white is for cookies only

The blogosphere is a war zone, the players are autism parents vs. autistic adults, and you have to pick a side.

You can either believe that disabled people are burdens and tragedies or you can believe that disabled people are capable of living happy and fulfilling lives. You can acknowledge and accept the difficulties that autism parents live with every day or you can believe that struggling with autism means that you don't actually love your child. You can't mourn the tragic death of George Hodgins and feel sympathy for his mother at the same time; you just can't. This is a black and white battle and you need to choose which side you're on.

"You're not like my child. You can write. And have a job. And friends."

"You're abusing your child by giving him/her ABA."

"You're a fake autistic/a fraud/a poseur/the enemy of me and my child."

"Grieving because your child is autistic makes you selfish and is not okay."

I'm sorry, but that's fucking bullshit, and I refuse to participate in it. I will not pick a side, because none of this is black and white. There may be extremists on either side of any issue but as like most issues, the majority of us lie in the middle; in the grey area.

Here in the grey area, I know that my experience with autism isn't the same as your experience with autism, but that doesn't mean that my experience is less valid than yours, or that yours is less valid than mine. It just means they're different, and while I have not walked in your shoes, I can still be sympathetic to your feelings; and I expect the same from you in return.

That doesn't just apply to me, of course; that's for all of us. And of course this war didn't start recently, it's been waging for years; but until and unless we all... all of us.... come to terms with these facts, this war will never end. And what good is it doing for our kids? For the adults? For the adults that our kids will be some day?

My friend Rhiannon, who blogs at Unhandicapping the Disabled Life (and who is so much better with words than I am) says: "You can address those with disabilities as entities of value in and of themselves, and for themselves, or you can address them as if their value only exists as contextualized by the part they play in the lives and world of others around them. In either case, there is the issue of how you make those judgements. Do you judge a person, a life, and a place in the world only by its disadvantages, or only by its advantages? Do you judge things for what they are, or in contrast to what they might otherwise have been? Or, perhaps, can we be as realistic about the life of someone with disabilities as we can about any other life, and accept an honest dialogue that reflects the totality of the human experience. That is, after all, what everyone involved in this debate IS.... a human being. It doesn't matter if we're talking about a teacher, aid, therapist, doctor, parent, sibling, or anyone else in the support system (or lack thereof) that, directly or indirectly, is involved in the life of someone with Autism.... even that stranger in line at the store. The fact is, we're all human, and we're all in this together. Not for better OR worse, for better AND worse."

I added the emphasis on that last part because it perfectly sums up what I'm (lamely) trying to say. This "black and white war" does no good for anybody involved, and so I'm staying in the grey area. It's here that I get to both sympathize with my autism mom friends whose experiences have been so much harder than mine, and who tell me that it really is like a battlezone sometimes, and I can learn from my autistic friends who have made my life, and my son's life, so much better just for having known them. I'm lucky that I get both sides and if you're insisting on staying just on one, I feel sorry for you.

The world isn't black and white, and yours shouldn't be, either.

---