The Word

I have a little hang up about the word “autistic.” I think it’s because when I was growing up, it was one of those words that was whispered. “He’s autistic.”

There was a definite cultural tendency to feel sorry for people dealing with autism. And I guess that makes sense, considering it was depicted in my limited exposure, through the media, to be a condition that resulted in a child with no response to anything, that would stare out the window all day long and never share their thoughts.

I’m not a fan of the newborn phase of child-rearing. I’m selfish that way. I don’t like giving and giving and not getting much in return. As a mom, I thrive on the smiles, and laughter and hugs and kisses and listening to my kid’s amazing thoughts as they develop and become more layered. The real fun starts for me at about 2 ½. The idea of a child that I had to do everything for and I got no response from really does sound like one of the hardest things I could dream of, personally. I assumed that autism was like having a newborn that never developed. So, autism, I wanted no part of.

Whenever we go out of town and there’s an opportunity to hit up a Trader Joe’s, we do it, because there isn’t one here in Maine…yet. No more than a few months ago, we were stocking up on our sourdough bread and sea salt pita chips on the way home from our weekend getaway to Rhode Island, letting the boys each use the little mini shopping carts and take the items we wanted off the shelves themselves. The woman in front of me at the checkout saw Nathan and Joey with their little “buggies,” as these East Coasters call them, and had a big smile on her face.

“They’re so cute,” she said to me. “Just adorable!”

“Thank you so much!” I said. “They keep me busy!”

“I’ll bet!” she said and turned back around.

I could see her trying to decide whether or not to keep talking to me, but she was compelled.

“I have a son, too. He’s 8.” She said.

“Oh, then you know!” I said, as Joey tried to grab 10 chocolate bars off the shelf and Nathan practically crashed into an 80-year-old woman with his cart because he couldn’t stand still.

“Well, my son’s autistic,” she said. “He doesn’t really talk much. He’s in a special school, but, we haven’t seen much improvement yet.”

“Oh, I’m sorry to hear that,” I said, feeling so lucky, and thinking that pity was the right response.

She went on to tell me that they’d tried everything – various therapies, diet, etc – to no avail so far. She seemed somewhat exasperated, and at the time I took her to be looking at me with envy, with my two, active, talkative, “normal” boys.

I remember feeling so incredibly fortunate that I didn’t have to deal with autism in my boys. Autism. That dirty word. That thing that poor Sylvester Stallone had to deal with. All that fame and money, and Rocky still had to go home to an autistic son that wouldn’t run up to him and give him a hug and a kiss at the door. Poor Rocky.

But now, in light of finding out that Nathan is on the spectrum, I reflect back to that day at Trader Joe’s, and I don’t think that that woman was looking for pity, or looking at me with envy. She appreciated the liveliness of my boys, and perhaps looked forward to a day when the interventions she was exploring would bring her son to a more interactive place. But no doubt, she was glad to have her son, glad to be alive. She wasn’t melancholy or brooding. She was talkative and engaging. I just heard autism and my pity button was pushed.

So, I’m chalking this up to one of many lessons I’m sure I’m going to be learning in the years to come. Maybe there’s some people that want pity when life deals them cards that aren’t what they expected, that could be, arguably, “worse” or “harder” then what they were hoping for. But I’m not one of those people and I shouldn’t assume that others feel that way either. When someone tells me their child has x, y or z, I don’t want to go into a mode of feeling sorry for them, automatically, unless they’re bawling or saying it’s the worst thing that’s ever happened to them. Autism, and any number of conditions, disorders and illnesses that kids can have, are not bad words to be whispered.

And anyway, I live in New England. If I wanted to volunteer this information to everyone I meet, half of them would think I was saying my son’s a really good painter or something. “He’s autistic? Oh, my grandson has an exhibit at the college aut gallery. Aren’t you proud of your little autist, deeyah?”

Yes, I am.