Dear conference attendee,
In case you didn't know, I'm autistic. You say you have a child who is autistic? Or you work with autistic people? Yes, I know, you call us "people with autism", that's what you've been taught is correct, and I can't blame you if you haven't heard that this is not the preference of most autistic adults. I have a copy of Jim Sinclair's Why I Dislike Person First Language for you. Here you go, no charge. I've printed out lots of copies, along with other information which I fully expect to see lining the trash bins later. A few of you will read it, and that's all I can reasonably hope for.
Oh, you didn't know I was autistic? I wondered, with all that experience between the 600 or so of you, if you might not recognize it. Maybe the way I walk is like your son or the way I stare at the pattern in the carpet is like one of your students. Just in case, though, I wore a shirt with a statement of my identity in very large letters. No, it wouldn't have been considered rude to comment of that. You see, I have some problems initiating conversations. I have a hard time standing up in a group to say, uninvited, that some of the things I'm hearing are missing the mark by a mile. I don't always come across as intelligent or sensitive when speaking, either. Maybe you've noticed this about someone you know, too? Maybe that person can write pretty well, and you don't even know it yet, or maybe she will develop the ability to communicate well in this way. That's something I would think might encourage you.
From what I've seen, you could use some encouraging. And so could I. I'm going through a bit of culture shock right now, though I've been to several of these conferences before. This year is different, mostly because I have spent the past several months communicating with autistic people via the internet, and also with a very small number of autism professionals (N=3) who have supported the idea that my views about my own cognitive and social differences do count for something and are worthy of respect and discussion.
Yesterday, I attended the panel of family members. Where, I wondered, were the autistic members of these families? Why were we not represented by even one voice on this panel of "experts"? Whose needs are being served by this? There were questions which seemed to baffle the parents. They knew a lot about negotiating the IEP process and finding respite workers, but I might have been able to clarify some things about bullying, depression, and friendships for people on the spectrum. Did you think of asking the autistic adult in the room? Yes, I could have spoken up, but I am not likely to do that without being asked. Remember what I said about the trouble initiating?
Can I tell you what this was like for me in a way that might make sense to you? It was much like you were discussing the rights of a racial minority in front of a member of that group, while pretending she wasn't sitting there. I was hearing words like "burden" and "imposition" used about my people by those who are closest to the individuals being discussed.
Maybe the problem is that I seem too "high functioning" to have anything relevant to say. I know some of you think that anyone who drives a car, lives somewhat independently, has a job, goes to college, etc. could not possibly understand what your child or student or client is going through. You may be right. I'm betting, though, that my brain is more like his brain than yours is. I might know something you don't about what it means when he says that line from a movie, always in a certain type of situation. I might have a clue why she seems so angry all of the time.
This is your invitation to ask. If you are reading this because I gave you my card with the name and address of this blog, thank you for visiting. Your comments and questions are welcome here. I will also be at the Provider's Expo later today. The directors of this conference have allowed me a table to recruit subjects for research and to distribute some literature on the rights and concerns of autistic adults. I hope you stop by and talk with me. It may be difficult, yes, I might seem uncomfortable and so might you. That's nothing to worry about, it just means we are trying something different. It might be a good place to start.