Arundel High School educates a spectrum of teens with autism, in both the functional life skills program and the general education classes. I knew going in that a few of this year's walk participants have autism themselves, and it made me wonder how they might feel about the word 'curing' in TACA's name. Not everyone loves a group that talks about a cure. Now and then, I'm unfriended on Facebook, or a comment reaches my ears that TACA volunteers are off the wall or simply terrible people. That's fine. I can take it. I wanted this audience to understand one of the basic truths of my life: I can advocate for treatments and even cures and still love my child just as she is. The two coexist just fine.
After introducing TACA, saying my thank-yous, and telling them they are the best class ever (as I do every year), this is what I told them:
What do we mean when we talk about curing autism? I'll tell you what it doesn't mean: It doesn't mean taking away the unique gifts some people on the autism spectrum have. Kids with autism are some of the funniest, smartest people I know. Some have gifts in music or in art, or can do cool things that most of us can't. I don't want to take away who they are. But I would love to make it easier for them to sit in a classroom where people are crumpling papers or tapping pens -- all the noises you probably hear in your classes every day -- without wanting to come out of their skins.
But as you've already heard today, autism is a spectrum. I see some people wearing the light blue walk t-shirts. I've also see plenty or darker blue shirts out there. All of those shirts are blue, but they are a lot of different shades of blue. The autism spectrum is like that too. On one end, we have the people with unique talents. In another place on the spectrum are people who have trouble expressing themselves.
Imagine for a minute the last time you were sick. You've probably all had a day this year when you woke up in the morning and didn't feel well. Maybe you had a sore throat, or the flu, or a stomach bug. You wake up in the morning and you know you can't go to school. What's the first thing you do? You come downstairs, tell your mom or dad, 'my throat hurts,' 'my stomach hurts,' 'I have the flu,' 'I have the West Nile virus.'
But what if you can't talk? What if you don't have the skills to express how you're feeling? How will you let people know you're sick? If you have autism, and you can't talk, the adults in your life probably use a lot of picture schedules and checklists to tell you what you need to do every day. Even while you're feeling like you might throw up within the next two minutes, you have someone waving something in your face, telling you it's time to brush your teeth or it's time to do math, when all you want to do is curl up and wait to feel better. Imagine how you might react to that. You might throw that schedule right back at the person who's giving it to you. I know kids who have banged their heads against the wall when they're in pain, or who lie on the floor and cry or scream, because that's what they can think of to do when something is wrong. My daughter can talk, but she's not good at telling me how she's feeling. Sometimes I can't tell that she's sick until she gets upset. That's hard for me to deal with, but a million times harder for her.
As freshmen in high school, you've probably all had a lousy day at school before too. Maybe when you arrive home, you tell one of your parents about this kid who was messing with you, or that teacher who yelled at you. Your parents probably try to find the right words to comfort you, but as a parent, I can tell you that inside they're sad. It hurts them too because they love you.
I can also tell you that if and when my daughter is able to do that with me, inside I'll be cheering. I will try to say and do all the right things to comfort her, but if you hear the sounds of a party coming from Crofton, that will be me. Not because I like seeing my child unhappy (I don't), but because I will know that we have found one of the biggest pieces of our autism puzzle. If she can tell me when something is wrong, my job to keep her safe, healthy, and happy just got a whole lot easier. Those are the things we need to cure.
I'm not trying to create a cookie-cutter child, or the prom queen or the class president. I'll settle for a long conversation. I talk with doctors and specialists and other parents because in the end, I want to talk to my daughter.
