2/3 And I thought, wow, weird, but ok, they know this kid, they deal with developmentally disabled kids every day, they know better. And I didn’t think about it much. But then I read what you wrote about understanding, but not being able to respond. And it blew my mind. I thought of that kid, and how maybe asking him would have made perfect sense, because even if he can’t respond, that doesn’t mean he doesn’t get to be asked,
3/3and it doesn’t mean he doesn’t get to at least know what people want to do with his art. Even if he doesn’t have the capacity to voice his opinion about it. Thanks for writing about the way you do and don’t communicate, and explaining that lack of communication doesn’t equal lack of personhood or awareness. I will know that next time something like this happens, and maybe it will make a difference to the DD person it concerns.
Wow I’m seriously happy that people are asking him.
Something that made me cry, later, when I was capable of crying:
Sometimes I’m incapable of showing a single signal that I am aware of anything. Nothing. Not with my eyes, not with anything.
Normally, I’m accustomed to even people who know me, treating me different. At least, their manner of talking to me and their voice changes, they get nervous. At most… I get to learn what they really think of me, because they talk about me as if I’m not even there, including complaining about me in terms that made it 100% clear that they would not say this if they thought I was present there with them.
So I was at AutCom and I’d just given a presentation. It was super-crowded — the AutCom conference, 3 weddings, and a Bar Mitzvah, going on all at once in this hotel. I had a killer migraine and I was overloaded and I’d just gotten through my presentation, which I’d given by lying on the floor writhing because I couldn’t get up. One of those days. When it was over, a bunch of us autistic people (all nonspeaking normally), all went out into the hall in various stages of shutdown. Larry Bissonette was pacing. I was leaning up against a wall and I couldn’t move or even focus my eyes or move my eyes in any way.
I love Sandra Radisch’s writing and I wish I’d had a chance to meet her when either of us was more communicative. But her staff person came up to me to tell me what my presentation meant to her. And she did not bat an eyelash, she did not change her way of speaking to me in the slightest, she talked to me as if she was talking to any random person, even though I had no prayer of even blinking my eyes in response to her at that point.
And that meant more to me than you could believe.
If this child gets talked to respectfully and as if people expect him to understand, then he will understand. He may or may not understand the words. There is no way of telling even whether a very verbal person understands the words. He may understand every word said, or none, or it may vary day to day.
But at minimum, he will understand what it means to be spoken to respectfully — people with receptive language problems tend to do better at picking up on emotional content like that, so if he doesn’t understand the words, he will doubtless understand the intent. And he will begin to expect to be asked. He will expect respect. And when respect is not given, he will react badly. And that is the beginning of self-advocacy for people with very severe communication impairments.
But he will also possibly remember the first time he was ever asked, for the rest of his life. When nobody ever asks — it means the world. It meant the world to me, and I’m nowhere near in the position of being underestimated as thoroughly as this boy is. Talk to him. Include him. Ask him things. Talk even if you expect no response. It will mean something to him. It could mean everything to him.
"lack of communication doesn’t equal lack of personhood or awareness. "
We place so much emphasis on verbal communication that we forget that:
1) loudest does not equal right
2) most articulate/verbose does not equal right
3) there are other ways of communicating
4) which are no less valid
5) if someone has difficulty communicating in a typical or expected way that does not make what she/he wants to communicate invalid or unimportant
6) our lack of capacity to listen/understand does not equal lack of value/importance of the message!!
Listening and awareness are skills that must be practiced and developed as much as talking, and yet we learn so many anti-listening skills. LISTEN.
Yes. And also, if you see others involved in someone’s care write that they “have no communication”, it’s particularly urgent to figure out ways they communicate and document them.
Even if you’re not sure. Even if they’re ambiguous. Document that. Eg “Bob says infrequent and hard to interpret words.” or “Bob waves his hand in response to questions”.
The consequences of being seen as incapable of communication can get really horrible really quickly, so if you’re in a position to counter that, do so.