I believe AEIOU had the best of intentions. I really do.
The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.
As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.
I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.
I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.
And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.
The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.
If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.
Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.
Good to see you blogging again. This is my favorite of all the posts I've read regarding Autistics Speaking Day and the Communication Shutdown. Squawk.
Oh thank you! I've got a lot to say the next month or so, hence blogging again. I always did love your posts.
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