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.