Understanding vs. “Fixing” Autism

This short video is really interesting: Chris Packham on Understanding Autism

The way I see it, if I choose to learn skills to help me reach my goals, that’s great. But, if I let someone go inside my brain and mechanically change how I think, that’s troubling. In the latter, I lose control over my very self. I risk losing my very self. Is that still a “treatment”? Or am I merely being assimilated into a culture that refuses to make room for people who don’t fit a prescribed mold?

The diagnosis process for my then 3-year-old daughter troubled me. Things I saw as talents, they said were symptoms. (E.g., able to solve 50-piece puzzles as a toddler, lining up a hundred colored dinosaurs in a beautiful pattern across the table, quoting long scenes from A&E’s “Pride and Prejudice,” super-great at climbing, great at finding a way around any lock.) As we started treatment (early intervention), I asked whether they were going to take away the things she loved doing, what made her, “her.”

The woman who was going to be with her the most said no, what they were doing was giving her skills she needed to help her make it through this world we live in. The goal was not to change who she was, but to help her learn things so she could be the best “her” she could be.

Around this time, a friend recommended I read “The Speed of Dark” by Elizabeth Moon. It’s a great sci fi story. And, like all great stories, it gives the reader something to ponder. As for me, it helped me think more clearly about autism treatment for my daughter. (I.e., is it a disease that needs to be cured? Is it a defect that needs to be fixed? Is it a really interesting way of interacting with the world, one with more highs and lows than “regular” folks have? Is it a blessing, but one with a huge pack of work attached to it? Something else?)

Hearing the stories of people like Chris Packham and Elizabeth Moon helps me consider the situation with more information– it gives me a view through someone else’s perspective, a short-cut to their hard-earned wisdom.

I know lots of parents have kids on the spectrum that are non-verbal, unable to do self-care, prone to violent outbursts, and bigger than they are. I don’t have any opinion on what another parent needs to do in any specific situation– we’re so different! But I do think there’s a difference between helping a person learn new things to be their best, and fundamentally altering a person to try force them to approximate a cultural ideal.

My weird relationship with sci-fi/fantasy

⋅     Growing up, I spent lots of time in libraries– the ones in my elementary and high schools, and the one a short walk towards the Beltway from my house. In spite of this, I never got a practical idea of what the terms “science fiction” and “fantasy” meant. My view was that “Science Fiction” meant “1,000 Ways to Die in a Technologically Boring Way in Space,” and that “Fantasy” meant “Really Long Fairy Tales that Probably Aren’t As Good As the Real Thing.”
⋅     In sixth grade, I read “The Black Cauldron.” (Thus began my habit of starting a series anywhere. I read “Taran Wanderer” and “The High King” many times before I discovered that there were two other books in the series. I should tell you about meeting Lloyd Alexander…) I don’t know how many times I re-read those books, but I know the school and public librarians personally asked me not to check them out again for a while because other kids wanted to read them.
⋅     At some point in elementary school, I stumbled upon “The Silver Chair.” I thought it was really interesting, especially the part about drinking liquid diamonds (though that part was also annoying because how could you heat a diamond hot enough to melt it without it burning up and how could you drink such a thing and live?). I never learned that this was one book in a series until my husband was talking about how upset he was that they’d reordered the Narnia books. He listed off the order they were supposed to be in.
⋅     “Hmm,” I said. “Is the ‘Silver Chair’ the one where the underground is collapsing and the people say you should stay here and drink diamonds with us?”
⋅     He thought that was probably part of it.
⋅     “I think I’ve read that one. You say it’s part of a series?”
⋅     I can’t seem to remember his exact response, but it sparked a debate that’s lasted 22 years, so far, about whether it’s okay to start a series in the middle. (Remind me to tell you what happened with the Terry Goodkind book sometime. Ha ha ha ha ha.)
⋅     But one year at BYU, they were hosting a science-fiction/fantasy conference. My husband (at that time, boyfriend) is a big Orson Scott Card fan, and Card was signing books at Barnes and Noble (more on that another time). While we were waiting in line, my husband chatted with the other two authors who were signing books. One of them was really kind, really insightful, and really humble to put up with someone like me who’d never heard of her and was trying to figure out who she was without admitting it. My husband bought her book, “The Deed of Paksennarion,” and I read it and loved it. (Yes, that was the moment I met Elizabeth Moon, and yes, I totally botched it.)
⋅     Well, that was when I started reading science fiction and fantasy, qua science fiction and fantasy. Though I spent too long only nibbling at the feast, it’s been delicious.