Politics of Parent-Run Autism Groups

Even when all the parents running an autism group are good parents of autistic children, are good allies, there is still a very different feel to the group and a very different political structure when it is run by parents than when it is run by Autistic people. Autistic-run groups with parents in them run as Autistic groups, usually (sometimes the parents drag it more towards parent groups,) and parent-run groups with Autistic people in them run as parent groups (the Autistic people tend to get bullied, derailed, and silenced on the few threads they try to run Autistically.)

In an Autistic group, questions are more likely directed as "What worked for you?" as opposed to "What works?" or "What works for your child?" People seem more likely to be talking about stim toys. The focus is more on issues that Autistic adults face, since Autistic-run groups have mostly adults and some teens. Autistic-run groups also tend to have much lower opinions of, well, almost every autism therapy ever invented. Sometimes, the lowered opinion is the awareness that it can be done badly, depending on the goals of the therapy and who is choosing the goals. Sometimes, it is based in knowledge that the whole idea is fundamentally flawed, like for therapies that aim to teach communication or life skills but measure success by compliance.

In a parent-run group, no matter how many people in the group actually are Autistic, questions are usually directed at parents. When Autistic people speak up about their experience, while there are exceptions  there are four main categories of reaction:

1. We are Universal Translators - they assume that what we think might be going on is now exactly what is going on, even if it really isn't. This falls under "walking zoo exhibit", which is the one where people think our sole purpose is explaining our strangeness to the world, often to help translate their children's strangeness. We do have lives, and we are not the same people as your children. We have similar problems (often more similar than you realize, which leads into the next reaction.)
2. Not Like My Child. Basically, the fact that all they are seeing is our typing and the effects of having a much longer life in which to grow up and come up with coping mechanisms (and also the fact that some of us did not get put through the therapies that teach learned helplessness, meaning we are much more able to actually communicate what is going on and what is OK and what is not) comes through and hides the ways in which we are very much like their autistic children, or at least that we were. Autistic people grow up, and we're different as adults than we were as kids. The same holds true for all people, but it often needs to be restated with disabled people.
3. Don't Really Understand Autism because Autism Impairs Judgement. Autism experts do that one on a fairly regular basis. The autism expert from Ibby's Loud Hands Project essay (you should get the anthology if you can, by the way) did that. I thankfully haven't gotten much of this one, but it's a hard one to deal with. It's a catch-22, in many ways, in that people who do this one put every Autistic into either 2 or 3.
4. As If We Didn't Speak. Basically, they keep talking or chatting as if we never said anything. The reason can be 2 or 3, usually, but it's a method of ignoring what we say, of silencing us, and it is one of the hardest to get through to because they often won't even read what we write, simply skipping over it. 

All of these are forms of silencing, though the Universal Translator has usually struck me as the one where you have the most hope of getting education through and helping the kid. It might not do the parents much good, but I am often willing to settle for helping the kids, which I can sometimes do when seen as a Universal Translator. It still silences many of the things that need to be said, though.

It ignores the diversity among Autistic people, and it ignores the fact that we grow up to be more than just translators for the next generation. It ignores our outside lives. It is a form of silencing, and it is one of the more insidious, partially because of the fact that it it harder to see that it is silencing and partially because it is a half loaf that many of us will take in order to help the autistic kids who we are theoretically the translators for.

Those things don't happen so much when Autistic people are in charge. Parents may not be quite as comfortable, but this really isn't about the comfort of allies. Spaces where Autistic people are in charge are important, and spaces where parents are in charge can't be as safe for us. They can't teach parents as much either, but that's not entirely the point. (It's still important, though, because helping the parents understand better often means they can help their kids better.)

I updated this post a bit on January 24, 2014 (may vary by your time zone) and added it to the Down Wit Dat January T-21 Blog Hop. I'm not familiar with the way politics go in groups for other disabilities, but will entirely fail to be surprised if this applies to other disabilities as well.