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2:11pm June 18, 2013

That thing about communication again

I’m someone who uses aac as my only means of verbal communication, I’d never discourage it.

What I’m actually saying is that some people actually assume that if the autistic person isn’t communicating in language it’s BECAUSE THE PARENT HASN’T TRIED AAC WITH THEM, and has probably never thought of it, with a heaping dose of scorn added for the parent because if the child isn’t communicating in words it must be their fault.

Not that there aren’t parents who haven’t tried it.

Not that there aren’t parents who’ve never thought of it.

Not that there aren’t parents who just don’t care.

But that all of those things and more are the first assumption I see people making any time a parent references their autistic child not speaking, or not typing, and that is a problem. Especially when it’s not delivered as friendly advice, it’s delivered as scorn for the parent being so stupid as to have never thought of it (even if they may have tried everything), as if not having thought of it is stupid, and also as if the parent is possibly intentionally negligent, and a whole lot of other stuff.

That’s what I’m complaining about.

I’m not complaining about the idea of AAC. That would be ridiculous of me considering my own situation.

I’m complaining about the assumption that if an autistic person isn’t doing these things it’s because nothing was tried, and the assumptions about why nothing has been tried, and the assumption that there is no other possible reason that an autistic person might not be able to speak or type or use picture symbols.

That last is a particularly noxious assumption to me when I know so many people who can’t do any of the above. And when I see autistic people actively avoiding thinking of such people. And their active avoidance of thinking of such people shows up really clearly in the responses I’m complaining about. It’s like they don’t want to believe they exist at all ever, so if anyone appears to be like them, it must just be because nobody is trying the right approach with them.

And of course everyone communicates, including people who can’t use any form of speech or text. But that’s not what this post is about. This is about how people like to assume that the people with the most nonstandard communication styles don’t even exist, because its more convenient to them to believe that they’ve simply been willfully neglected than that there are people who really couldn’t do these things no matter what. (Or at this point in their life, at least, couldn’t do these things no matter what, even if they’ll have the skills twenty years later or something.)

And if parents who really are neglecting their kids communication and/or pretending their kids have “no communication at all” try and praise any of my posts on this matter just because they don’t like being chewed out by autistic people, they’ve got another think coming too. It’s just I don’t like everyone assuming a parent is like this the moment they say their child can’t talk or can’t type. Because its also sort of assuming that kids or adults like this don’t exist.

If they say they can’t talk and hear “then let them type, stupid” that’s wrong.

If they say they can’t talk or type and hear “then use picture symbols, stupid” or “then use FC, stupid” or “then work harder, stupid” that’s wrong.

That’s all I’m trying to say. And I’m not saying this because I really want to take the side of any particular group of parents. I’m saying this because I’m trying to take the side of autistic people who are all but forgotten in many circumstances. But who happen to be people I’ve actually known and cared about who really in many situations desperately wanted to communicate, as in the autistic person often tried really hard to use all of these methods, but none of them would work for them. None.

As in. The autistic person tried to type and got gibberish. Tried to hand out picture symbols and only got random ones. Tried to initiate facilitated communication and couldn’t do any better no matter how long anyone worked with them. Tried to speak but could barely say more than a couple words. Could not do the gestures for sign language. Clearly desperately wanted to communicate but could not do any form of symbolic communication offered to them. And then screamed for hours and pulled their hair out and gouged their skin with their fingernails in frustration. THIS ACTUALLY HAPPENS, it’s not just something made up by family members who haven’t tried enough.

(And that’s not to mention autistic people who can’t even get to the point of trying to do all those things and managing gibberish, or trying to do them at all, or moving at all, or understanding those things exist at all, because that happens too. Believe it or not. Even if far more people who are thought of this way, actually could do it, it’s definitely the case that some people can’t. Because some people who previously couldn’t, become able to, and are able to talk about how they once couldn’t. So there are of course some who never become able to.)

Even though there are plenty of family members who haven’t tried enough, or haven’t even known to try enough, who will say similar. But there is an actual thing and it looks very different than what such family members described but it’s hard to say how. It’s just different.

And it’s wrong. Always wrong. To, as your first assumption, say “well obviously you’ve never tried typing,” rather than to ASK SOMEONE whether they’ve tried typing. There’s a huge difference between the two. I can’t explain that either, I’m too tired, but what I’ve been trying to say is that this is the wrong way to go about it, and people responding to me seem to think that I’m saying people shouldn’t try AAC or something, or that it at least needs to be re-emphasized that AAC is important. When I’m the last person in a million years to say it isn’t, given I communicate entirely by typing and sometimes picture symbols and hand gestures. I’d never say don’t try typing, I’m just saying don’t go “they only don’t talk because you haven’t tried typing,” because you don’t know that and should never assume that about another autistic person. (Not because I’m trying to save anyone else’s feelings, but because that’s a bad thing to assume about another autistic person.)