That's a great observation.
When I think about conversations I've had with people who have autism or autistic Canadians—well, autistic people from around the world—there are a couple of things that come up. There are many things that come up, but the conversation is around the inclusion piece, and then there's a conversation around autonomy.
The autonomy question is always tricky for me, because it's difficult to imagine Jaden being fully autonomous, because Jaden doesn't understand danger. My son is very significantly affected. He's non-speaking. There's terminology that gets tricky for people, non-verbal, non-speaking, whatever terminology you use. Some people would say non-verbal. He's verbal with “ba ba ba ba ba”, and when he's doing that, oftentimes it sounds silly, but I'll look him in the eyes, and I'll go, “ba ba ba”, and he'll go, “ba ba ba ba ba ba”. It's the most engaged he ever is with me on a personal level. I don't know what we're talking about, but he does, and it means something that we're having that conversation.
Autonomy for Jaden.... What I've been really challenged by self-advocates on is that I walk away from those conversations, and my first instinct is to say, “Well, Jaden can't be fully autonomous”. I get a little bit defensive as a Dad, I think, in a sense. When I walk away from it, I think that he could be so much more autonomous than he is. We can give him more choice in what it is that he wants to do. We need to learn to be patient with him.
With Jaden—he's shorter than I am—I'll get down to his level. If he's sitting down, I'll sit down beside him and try to get down to his level. I have to read his skin tone, his facial expressions and his eyes when he's talking to me. Sometimes if he's nervous, he'll shake, but he'll never tell me how he's feeling. That's a really abstract communication. We really have to spend the time to really try to understand and be patient with him.
One of the challenges with him is that we almost always, in our impatience, decide for him or try to guess what it is that he wants when, oftentimes, if we just wait on him a little bit, he'll type it into his phone, or he'll point to something. There are times when he is trying to tell us something, and he goes, “ba ba ba ba ba”, and we're just too busy trying to move on with things, get in the car, whatever it is, and race away, and you realize that he's telling you that you forgot your iPhone back there. He noticed it, and he goes, “ba ba ba ba ba”, and you're discounting what it is that he's saying, and he has something he's trying to say.
We just need more patience, and as we learn to communicate with Jaden, we learn how to better communicate with everybody else around us, too. We become better for what we learn in that process. These are things that I've learned from listening to self-advocates, listening to autistic Canadians talk about what life is like and listening to autistic people from around the world who way too often are not listened to, even as we've been having conversations over the years on what to do to help people with autism. We haven't listened to people with autism as we're having those conversations.