The Denver Autism Wheel

When your NT turns into an advocate

Posted on: September 9, 2010

Advocacy is a permanent condition. It just is. Every parent wants the best for their child, no matter what the conditions of the child, the world, opportunities, or resources…We are parents. We advocate.

What is “advocacy,” anyway? In the purest sense of the word, it means “adding your voice” to something. There are individuals with autism who don’t have speech. That doesn’t mean they don’t have a voice or that they can’t be advocates. Have a look at Amanda Baggs, a low-functioning autistic woman with one of the most articulate arguments for human rights I have ever seen. Here’s the video. If you’ve never seen it, brace yourself. It’s amazing, poignant, beautiful and true.

Individuals with autism sometimes need Typical voices added to theirs, however. I think it’s like speaking through an interpreter. It doesn’t mean the interpreter had the brilliant idea; it doesn’t mean the person with the idea is any more or less because he speaks a different language. The message is the thing. The messenger can be powerful, but it’s the idea that has to get across.

So parents advocate for their kids. And kids roll their eyes and say, “Aw, Mom!” and get embarrassed and kick the dirt with their sneakers. They learn to deal with it, and it’s not like we’re going to stop because they’re embarrassed, right? But sometimes, the best advocacy comes from the side, not from above.

Luke got himself all upset this weekend because he thought a boy he knows was saying mean things about Chris. He was really upset, and I think it was a real testament to his character, first, that his natural instinct was to stick up for his brother, and second, that he was able to explain his predicament to us before anything happened. As it turns out, the boy was talking about something entirely different, a different “Chris,” goodness knows there are enough of them, and different circumstances. No harm, no foul, and Luke felt better knowing there was “no ‘there’ there.”

Enter the Teachable Moment. Imagine being a kid. Your older brother does weird and embarrassing things sometimes. He makes strange noises. He hops up and down. You wish he didn’t, and sometimes it gets in the way of playing a video game or watching a movie, and sometimes you get angry about it. But when it comes right down to it, he’s your brother. Genetically, you guys are almost indistinguishable, you’re so close. You spend most of your time at home with the guy, he’s the one you play with when there aren’t other kids to play with (and sometimes when there are).

Add to that the complication of having a friend point out that your brother is weird. Let’s face it, kids tend to have less patience with weirdness sometimes. When you’re 7, which way do you go: the weird brother you are going to be with your whole life or the friend you want to hang out with because you both like Legos and Star Wars? It’s a tough call, but Luke made the right decision. You stick up for your brother.

Does that mean Luke is going to grow up to be an autism advocate? I wouldn’t hazard a guess. But he just might grow up to be an advocate for his brother and himself. And that’s what really matters. He added his voice in defense of the weird kid who is his brother. He drew a line for himself: “I am here for my brother, even if I have to stand up to my friends.” Way to go, Little Bro.

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