March 3, 2012

An Education

About a year ago, I wrote a piece called Notice of Eviction. I've been thinking about that piece a lot lately.

Over the past few months (and probably much longer), there have been discussions taking place between people in the "autism community," in this case, mostly parents of children with autism and people who themselves are on the autism spectrum, sometimes referred to as autism self-advocates. I am not going to summarize everything that has been said, though I will provide some links below, some of which contain other links.

It is hard for me, as the parent of a very young child with autism, to wrap my head around these discussions. But I have learned a few things that I want to share here. I do not claim to summarize all of the issues, but just a few that have been salient to me.

  1. It is hurtful to autistic people to say things like "autism sucks." Someone might mean "it sucks that my son has no friends" or "I really hate the fact that my five year old isn't potty-trained." If autism describes the fundamental way in which a person views the world, what we are really saying is we think our kid sucks. And I know I don't mean that, and you know you don't mean that, but do others? Will Moe look back someday and read these words and know what I meant?
  2. Using a term like "cure" can be hurtful. As in the above, the term "cure" implies that autistics have something wrong with them that needs to be fixed. In one piece, Rachel Cohen-Rottenberg compared able-ism to racism. Imagine if I said "I wish my kid weren't black. I would just be so much easier for him." The analogy isn't perfect. Moe, for example, may never be able to live independently, not because of any societal constraints, but because he lacks the judgement and skills to do so. That said, it is a good analogy to use to check my thinking.
  3. It is patronizing to say "children with autism" when you mean "people with autism."
  4. Terms like "grieve" and "mourn," often associated with death, are hurtful. This is a tough one for me. Having lost my only sibling, I know what it means to grieve a death. I also know the profound sadness and loss associated with seeing Moe's skills slip away. I don't want to belittle the process that I or other parents go through. However, I am going to try to focus on my own process of accepting a family that is different than I expected, and try to leave talk of grief behind.
Many people's feelings have been hurt during these discussions. I don't think only one side or another is to blame. One mailing list I am on used the subject "Autism Parents Doing Damage" to inform the group about these discussions. I don't think that is fair to say. A lot of people did damage by being quick to judge, being reactionary or overly-defensive, resorting to name-calling, and not listening to the intentions of others. This is the nature of the Internet.

We aren't always going to agree. You'll notice, for example, that I will be walking in the Bay Area Walk Now for Autism Speaks. Many people do not support that organization, for, among other reasons, their use of "cure" terminology, and lack of autistic people on staff. I respect this, but I find a lot of value in the community aspects of the walk, and do think AS does good research. I think we need to know more about the causes of autism (I suspect there are many), not necessarily to find a cure but so we can be more knowledgeable about which types of therapies will be most helpful to a given person without so much trial and error.

I have flown mostly under the radar in these discussions. No one has come to my blog and called me a bigot. Perhaps I am not smart to point out one of my own "able-ist" pieces here. But as I read Notice of Eviction now, I see how this could be construed not just as me wishing away the challenges that autism has brought, but wishing away the fundamental parts of my son.

I thought about taking the piece down, but I won't do that. It was where I was at the time. I do think it is possible to both simultaneously hate the disability that has brought a lot difficulty to our lives and love the unique perspective he has on the world. Moe is four, doesn't speak or communicate well with pictures or signs, so it is hard for me to know what that perspective is. 

I hope he will learn to share it. And I hope I am capable of hearing it when he does.

For more background on this post, here are some links:
The Evolution of An Apology, Jo Ashline
I'll Take Offense, If You Don't Mind, Rachel Cohen-Rottenberg
This is MY Reality, Sunday Stilwell
Telling Autism to Suck It -- 10 Thoughts, Landon Bryce


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