Wednesday, March 28, 2012

Autism awareness begins at home

Once again, this year, on April 2, World Autism Day, Bud and I will be swapping out the soft-glow energy efficient light bulb in the entryway of our house for a bright blue bulb, as we join with other households - and with the Empire State Building, Rockefeller Center, Niagara Falls, the Sydney Opera House, the Hungarian Parliament Building, and many other public venues worldwide - in the Light It Up Blue campaign, sponsored by Autism Speaks and directed at shining the spotlight on autism.

I know that this is a campaign that makes some eyes roll - Is this really activism?  In what way is it really spreading meaningful awareness or making a tangible difference in the lives of people with autism?  Isn't it just a campaign that makes people feel like they're doing something good, without actually prompting them to do something good?

Last year, I engaged in some dialogues about the relative merit of the campaign.  This year, though, our blue light feels a lot more personal than political.  And I'll tell you why.

Bud knows he has autism.  A couple of years ago, as I was preparing an autism presentation for his classmates, my mind kept coming back to the disability rights philosophy "Nothing about us without us."  I knew that it would not be helpful to Bud or to his classmates for him to be part of the presentation, and yet, I also knew that it was not fair to give them information about him that he didn't have about himself.  I'd never hesitated to use the word "autism" in front of him, but I'd also never talked to him directly about it.

And so, before I met with his classmates, I sat down to talk with Bud about autism.  As you might imagine, Bud's not an analogy kind of guy, so I steered clear of any mention of toasters or hairdryers.  Instead, I tried to keep my explanation clear, direct, and on point.  I told him that people have brains that work in different ways, and that the way his brain works has a name:  autism.  I told him that autism makes some things harder for him than they are for other kids, and it makes some things easier for him than for other kids.  He acknowledged that he'd heard me - I think he said "oh" - but he didn't seem particularly interested.

"Can you think of some things that are really, really hard for you, Bud?" I asked.

And without missing a beat, he responded, "Change is hard."

"That's exactly right, Bud," I said.  "Change IS hard, and sometimes it's a lot harder for you than it is for other kids.  And that's because of autism."

"Oh," he said again.

"And can you think of some things that are really easy for you?" I asked.

"Computers," he answered.

"That's right, " I said.  "Computers are easier for you than for other kids because of your brain's autism.  And you know how you can say all the words to TV shows?"

"Yeah."

"Most other kids can't do that."

"They CAN'T?"

"Nope.  But it's easy for you because of autism."

"Oh.  Cool."

Bud asked if I had autism, too, and I explained that I didn't.  We talked about other people we know who don't have autism and other people we know who do.  And that was about that.  Bud's world was not rocked, but he did have a new word to carry with him.

From that point on, I'd bring it up from time to time.  If he was struggling with something, I'd help him take a step back by explaining that it was his autism that made it difficult for him.  Once, when we were at the mall, we heard a child making loud but cheerful vocalizations that were echoing through the aisles. 

"Why does she keep doing that?" Bud asked.

"She likes to do that, Bud," I answered.  "You know how you like to say the words from Teletubbies?"

"Yes."

"You like to do that because of your autism.  Well, she has something that makes her like to make that noise.  It might be autism or it might be something else.  Everyone is different."

"Oh," he said.  And then, his sensory integration rattled because of the interplay between the other child's reverberating cheerful vocalizations and his own autism, he added "Let's get out of here."  And we did, as I chalked one up for emerging self-advocacy skills.

A short time later, Claire Hughes-Lynch's wonderful book came in the mail.  Bud, always hopeful that any package delivered to the house will include a surprise for him, asked what was inside.

"It's a book, Bud.  It's for me."

"What's the book's name is?" he asked.

"It's called Children With High Functioning Autism."

Bud gasped.  "Like ME???"

"Yes!  Just like you,"  I said, as he skipped away, delighted to be the sort of person that people write books about.

So, over time, "autism" became a familiar concept around our house - though, to be honest, Bud sometimes has a hard time remembering the word itself  ("What is it, again?").  And so, last year seemed like the right time to introduce the concept of Autism Awareness, through the lens of the Light It Up Blue campaign.

I explained it to Bud this way:  People all over the world would light blue light bulbs on the same day, so that everywhere people went, they would see blue light bulbs, and the blue light bulbs would keep reminding them of the same thing:  People with autism are important.

A few days before April 2nd last year, we went together to Home Depot to pick up a bulb.  "Remember, Bud?" I said.  "We'll light up this blue light bulb to remind everyone who sees it that people with autism are important."

And then, it was April 2nd, and as night fell, I went outside to take out our old light bulb so we could light the house up blue.  It was dark enough that the bulb cast an impressive glow, and I called Bud over to see it.

He stood at the front door, pressed his face against the glass, and stared with wonder no less profound than it would have been if he'd been looking at the northern lights or at a sky filled with the flashes of a meteor shower.

I crouched down next to him and stared out the window at our blue-tinged front yard.

"Remember Bud?"  I said.  "Remember what the blue light means?"

"What?" he asked.

I prompted him with the words we'd been using for weeks.  "The blue light reminds everyone who sees it that people with autism are..."

And as he stared out into the blue, he answered softly in a voice that came from a million miles away:  "Awesome."

So, yeah.  We'll be lighting it up blue again this year. 

To remind everyone who sees it that people with autism are important.

And, more importantly, to remind Bud that people with autism are awesome.