Monday, April 4, 2016

Autism Day

I was leaving Ethan's school in a hurry the other evening after parent/teacher conferences when the social worker stopped me.

"I have the video we're going to show the kids tomorrow for Autism Day, if you want to take a quick look at it," she said.

Oops. I'd completely forgotten about Autism Awareness Day. Or Acceptance. Or whatever you want to call it. We'd seen the flyer come home. Apparently all of the elementary schools in town, at the very least, were participating. We were supposed to wear blue.

There are some people who love the idea of an Autism Awareness Day, and others who argue that what we really need is understanding. Since the blue theme and puzzle piece logos stem from Autism Speaks, there's an array of emotions out there, in Autism World. Autism Speaks has not been in too many peoples' good graces, in recent years. I don't know the whole story, but I can say a big part of this stems from the fact that they haven't been too open to having people who actually have autism serve in positions in their organization. And they've spent an awful lot of money on trying to convince people how scary and tragic autism is.

As usual with these matters, I fall somewhere in the middle, and to me, any school event that's going to acknowledge and try to educate people about autism is pretty much a good thing. So sure, we'd send Ethan to school in blue.

But this year was different. This year was the first year Ethan would be going to school knowing and understanding he was one of those people with autism that everyone was talking about.

This made me wonder a little more closely just what was going to be said.

I took a look at the video the next morning before school. It was what you'd expect from a five-minute video trying to explain a very complex condition to children. So-so. I would've loved if they'd just showed kids or adults talking about their autism and what it means for them. Each person is so different. But there was a part about all of the sounds that a person with autism might pick up on that others don't notice, and how distracting that might be, that was good. I felt as if they'd just barely scratched the surface, though.

Still, I realized this really wasn't about how I felt about the whole day, but rather Ethan.

"We're going to be celebrating Autism Awareness Day!" he'd announced. He said he was excited about it. I asked him if he was going to say anything about himself. He thought for a moment. "Nah, I don't think so."

"That's fine," I told him. "You don't have to feel any pressure to talk about yourself." Then I thought about the video. "But Ethan? If you see anything on the video that doesn't sound like your kind of autism, you can speak up about that. You can let people know that not all autism is like that." He said he would.

Ironically on Autism Awareness Day we got thrown a little test -- exactly the type of thing that might throw a kiddo on the spectrum off. We got to school and Ethan realized he forgot his backpack. Even though I told him I'd drive straight home and get it and bring it back, he didn't want to get out of the car at first without it. As the principal stood there trying to help him out of the car, he wouldn't budge.

"We're just having a little issue here because he forgot his backpack," I told her. I'm glad Ethan was able to swallow hard and force himself to jump out of the car, but if he had really melted down, it would have been the perfect example of those small changes in routine that can just set autistic people off. Sometimes others don't understand. Sometimes they need to see autism in action, to see the story from start to finish and realize it's not just about a child being willful or undisciplined.

Twenty minutes later, I'd dropped off the backpack, happy to see all of the little second graders pecking away at their Chrome books, and went about my day.

At 4:15 Ethan bounded off the bus with the biggest smile on his face. "I told the class about my autism!" he announced as he burst through the door. "And you know what, two other kids said they have autism too!! And another one thinks she has it!"

I asked him about the video, if he thought it was okay. He picked right up on the part about hearing sensitivity.

"I can hear really, really well," he said. "Hearing is my superpower." I love how in the video, that was presented as a challenge for people with autism, but he turned it into a benefit.

And then he went off to play video games, and I went to send a thank you email to some of the school staff.

I know they don't get everything right. This autism thing, how to approach it, how to educate without making some people with autism feel terrible about themselves, is not simple.

But I can't thank the school enough for trying.

My son felt special, and he felt as if he was understood.

I can't ask for anything more.

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