I am only on the fringes of autism communities, but even from way out here I can see that they have some serious problems. In this case, I am speaking specifically in terms of rifts. Huge, gaping chasms between different groups that only appear to be growing. There is tension and anger and hurt between autistic adults, parents of autistic children, various “experts” in the autism field, and sometimes even allistic friends of autistic people. These rifts are volatile enough to have driven at least one autistic blogger right out of autism communities entirely. These problems, and the ways many of us (including all the groups here) seem to be dealing with these rifts is really not helping.
Also, I am not immune. I have my own lines in the sand and I feel hurt and angry and frustrated when I see people cross them. I often feel alienated by parents and by experts and by people who are, in theory, supposed to be on my side – because we are all supposed to be on the same side, aren’t we? But it’s just not working that way. I want this post to be about the divisions themselves and my hope of reaching out and narrowing them, even if by a little bit, and I’m hoping my own hurts won’t impact this goal too much. However, I cannot guarantee that I will be able to keep them out.
Lately I have been talking to a friend of mine about erased and invisible I often feel. After writing Erasure, it came up that, despite so many of us making so much noise, we simply were not heard by much of the general public. People happily went on their way with no idea of what had happened with attitudes about Asperger’s and Adam Lanza. We tried to make our voices heard, but the general public was simply not listening. And I feel frustrated about this and I don’t know how to fix it.
I think that lots of people in the greater autism community feel this way. I doubt that I am the only blogger who feels like I am mostly shouting into the wind, and I have gathered that many parents feel the same way. It feels combative – that we have to fight the “experts” spreading hurtful and damaging information, we have to fight schools that don’t want to give accommodations, we have to fight employers, we have to fight misinformation, we have to keep on fighting and keep on shouting in order to be heard at all.
Only instead of this common frustration being a point of unification, it seems to be a point furthering the divisions, especially between parents of autistic children and adults on the spectrum. It’s like we think all the chairs at the table are filled, and there’s only one chair left, so only one group can have it. Autistic people often feel frustrated at being silenced, at how often people will talk about us without even considering talking to us, and we are trying so hard to be heard. Yet when I see autistic people say “we need to be included in the conversation too, please stop shutting us out” I often see parents reply “stop trying to exclude parents from the conversation! we need to speak for our children!”
It baffles me. Including autistic voices should not automatically mean excluding the voices of parents, so why do people take it that way? Ultimately, I think it comes down to the chair analogy. I think part of it is that feeling that there is only room for one more chair, and parents, understandably, want it for themselves. No one wants to be silenced. Also, I would not be surprised if there are autistic adults who *are* saying that parents should not be heard – and even that, I think, is about the chairs. If there’s only one chair left, it shouldn’t be surprising that autistic people want it, and believe that we have more of a right to it than parents or other groups, since we are the ones actually on the spectrum. And it doesn’t help that there are parents out there who explicitly state that we should not be allowed a voice at all. That we are either too disabled to contribute, or not sufficiently disabled to count.
This is a HUGE problem. In the end, we all want the same thing. We want the lives of people on the spectrum to be better. We want our futures to include opportunities, we don’t want to be told that we have no chance at happiness or friendships or relationships or whatever else. Yet instead of working together so we can all be heard, we turn against each other and yell our rage and our fear and our feelings of utter helplessness as though it’s each other’s fault.
And if I am utterly honest, I am sure that some of this comes down to the fact that a bunch of people with a social learning disorder are trying to build communities. I certainly don’t know how to build a community. I barely even know how to be IN a community. It’s awkward and it’s difficult and we’re making mistakes along the way.
Personally, I like the idea of building community. I think we have a better chance of being heard, of not being erased, if we can find a way to make noise together. And I think it would be even better if instead of fighting each other for the last chair left, we fought together to have more chairs so that we can ALL be heard. So that we ALL get to have a voice.