AUT about Autism (#159)

“You know, Kristina,” my mom said, “one day we were in the parking lot of Costco and we found a women staring at the magnet on our car. And she told us that her grandson has autism and she just wanted to do something.” The black car is again an autism awareness billboard as proclaimed by the puzzle ribbon magnet on its left side (good thing we went to the car wash yesterday).

Car magnets and bumper stickers, wristbands and totebags all bearing that one word that has changed and become our lives–AUTISM–are small ways of saying what needs to be said. It is certainly good that more and more people are “aware” of autism but we need to go beyond mere “awareness.” We need to change the world so that people understand what autism is, so that the world is made safe for autism; so that autism is not a bad word with negative connotations.

When Charlie was six, he was in a self-contained public school autism classroom in a K-2 elementary school in our town. The children (seven in all) ranged in age from five to seven years old and the sign on the door said “primary autistic.”

“That’s not right,” said another mother to me as we waited for our kids one September day in 2003. “They shouldn’t have the word ‘autism’ on the door.”

“But that’s what they have, I mean, I’m always just saying, Charlie has autism,” I replied.

“They shouldn’t label the kids like that. I’m talking to the principal,” was the response. A few days later, the “primary autistic” sign was gone and Charlie’s room was ever after known by his teacher’s name.

The difference of calling Charlie’s classroom “primary autistic” or by the name of his teacher was largely symbolic. The kids in the school knew Charlie was “different” and in the “special” classroom. He and the other kids sat at one table in the lunchroom with five aides standing over them and entered and exited the school building via a different door. When, last February, I told another women “my son has autism” in the Toys ‘R’ Us parking lot, the words came out of my mouth as an instinctive response, drilled into me after six years of saying it and “he’s disabled,” “he has special needs,” “it’s autism.” We taped a homemade I Love Someone With Autism sign to the green car’s back window for Autism Awareness Month 2003.
Today at the mall–packed and smelling of the holidays–I twice proclaimed my son has autism. “Stand up. Put your foot back,” an exasperated clerk in the children’s shoe store was saying as Charlie slumped in a chair, his foot sort of in the proper place. “Is everything okay?” a security guard asked as Charlie, upset that we were not getting lunch at an overcrowded Johnny Rocket’s, ran in a circle and squealed. I said my phrase and smiled and stationed myself peacefully beside Charlie and his agitation passed. (And we went to the drive-thru line at McDonald’s.)

We need to be AUT about autism 24/7. Because autism is Charlie, Charlie has autism, Charlie is the boy we love and do and would do anything for, and it is not a problem.
As we stopped for a red light on the way home from Charlie’s (very good) verbal behavior session, two women in an adjoining car were turning their heads to look at this serious guy with the fleece hat pulled low over his forehead; Charlie was returning their looks with great eye contact and unabashed seriousness. (The puzzle magnet was on the other side of my car.)

So keep an eye out for us. We’ll be bringing Autismland to you, courtesy of the black car and Charlie with those big brown eyes.

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