Wednesday, February 2, 2011

Community: I don't think it means what you think it means

I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.

I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.

Guys, I think this is a problem.

For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."

But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.

I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.

If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.

It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.


  1. "This is really bad news."

    You have a genius for understatement.

    Proponents of cultural genocide speaking for autistic people is bad news?

    Um, yeah.

  2. Just discovered your blog, and this post just made me stim and go "YES YES YES".

    Because this is something that I have been annoyed with for years now. And I continue to see it. Over and over.

  3. Yay! I'm glad to hear that I induced excited stimming.

    I'm always relieved when someone else has noticed and been bothered by something that's bothering me.

  4. Hi Zoe, thanks for stopping by. I'm going to answer here and on your blog just to make sure you get my response.

    Yes, I do think Matthew understands analogies better. He often tries to make them himself, but never have they been this sophisticated and right on. It was really cool to witness. He makes me so proud.

    As for the autism now production I am starting to question some of the choices made. First, and I know this is something we don't exactly agree on, they are rolling out a lot of people that really don't know a ton about autism. What I mean by that is that most researchers are so far behind what the parents, families and adult autistics know. The subject of autism seems to be so taboo, and certainly the idea that autism is a medical condition seems very upsetting to many. I find it interesting that many autism parents have been saying environmental factors have played a part, and only until recently have we been told fat out that we are completely wrong. We were told it was psychological, for sure, no question about it. Then it became genetic, for sure, no question about it. Now it is genetic with a little environment for good measure. Basically they don't know, they are afraid the parents could be right, but now thaws children are out in the open and aren't going away.

    Next, you are correct, they aren't talking to adult autistics that could shed some light on what it is like to be autistic. What it really is like to live with autism. What insights autistics have. I personally want to thank you for opening my eyes to that neglected "piece of the puzzle". (sorry, couldn't help adding that, it was just right there, you know). As a parent of a child that couldn't express himself, I still have that position sometimes. I want to protect him and sometimes I forget that he has a say in his life too.

    I too felt frustrated with the description of what autism is. Because there is no test, and because many children with autism can't explain what is going on, doctors often roll out their hypothesis as fact. When in reality anyone that is not autistic can not fulling understand what it means to be is just impossible. I always want more insight into how Matthew may possibly think or see the world. But of course he doesn't see or think exactly like anyone else, autistic or not.

    And I can see how offensive the idea that autistics aren't as "human" as others is. That is absurd. Matthew is extremely empathetic, love and caring. Just last night his father found him praying to God to help his brother that has a cold. He felt bad for his brother and wanted God to come down and cure him, it made him feel horrible that Nico was sick.

    Sorry, I'm rambling. Autism is so different from anything I have ever experienced before. I'm no expert. I'm just a mom that loves her children and wants to give them the best I can. Thanks for helping to educate me, Zoe.