(This piece appears in the recently published Anthology of Disability Literature)
Recently, my 12-year-old Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once.
The cashier might have stroked Alex’s head out of understanding the kind of life Alex is likely to have. Of course I wish she’d felt comfortable yelling at him, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store, comfortable in the way somebody might be yelling at Alex’s typically developing 9-year-old brother Ned.
They don’t yell at Alex in the pizza place, either. I take him there in the fragile hope that he’ll eat the cheese off a slice or two while he’s out of the house so Ned can get his English tutoring. Alex and I often take the table way in the back, and the first few times I did this I was scared he would bolt while I got the pizza. “We’ll keep an eye on him, buddy,” the guy behind the counter said.
Alex has received his share of looks – more outside of New York City (they positively stared in the Massachusetts malls), perhaps because people are used to seeing just about anything in New York and passing by without what appears to be an obvious thought. When Alex was still a baby on oxygen, some kids on a Queens sidewalk did ask, “What happened to that guy!?” That was nice; Alex was emerging from a year in the hospital, and it was good to think he’d ceased to be patient and had finally become some “guy” on a sidewalk.
People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too! Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I want to live to see him get that. I call that my Hopeful Outlook.
–Jeff Stimpson
Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism
How Quick We Are to Judge
I think it’s safe to say that if not all, then very close to all, parents of Autistic children have had to endure the comments, looks and judgments from others while our child throws him/herself into a fit of rage, screams at the top of their lungs and/or starts to get violent. It can happen at the most opportune times such as at restaurants, grocery stores, play centres and well, really, anywhere.
We have all had that moment where we look at the person judging us and debated within ourselves whether or not they warrant an explanation or if we’ll just leave it be and not give them the time of day. It’s hard enough to deal with all by itself without the mumblings, judgements… comments.
Something happened to me just yesterday, which actually had nothing to do with Autism but it really made it very very clear just how quick we are to judge.
My wife frequents a message board with other moms where one lady had just recently lost her child and that mother had asked that anyone who may be going to be a beach, to write the child’s name in the sand and take a picture. It just so happened that we were going to the beach so this was certainly something we could do for her.
We had a great day and prepared to leave but realized that we had forgotten to take the picture so I raced back to the water’s edge and wrote the boy’s name and proceeded to get pictures. But I wanted pictures that captured the moment so I took angles which would capture the water as well, even the other side of the lake, while still being able to read the name.
As I tried for a few angles, I could hear some teenagers in the water swimming and one of them said “uhmm.. why is that guy taking pictures of the water?” to which another replied “I can think of one reason… ‘fruit loop!'”
I dismissed it, no big deal really but after a few more pictures, their attention turned back to me again. “Seriously, what is wrong with that guy?”
Finally, one of them, bless him, said “Uhmm… why don’t you just ask him?”
Well now, there’s a novel thought! I mean, truly brilliant if I must say. If you don’t know why a person is doing something, why not ask?? Hm… nah, that doesn’t make any sense… and so they continue… “He’s just weird!”
So at this point, I spoke up, kind of changing the story a bit as it was none of their business about a poor lady’s loss “Actually, a little boy is very sick and all he asked for was to have someone write his name in the sand on a beach and show him in a picture, ok?”
As I turned and walked away, all I could hear “awww… that’s so sweet” and “oh my God, I feel so bad” and “that’s such a nice thing to do!”
I made sure to leave the name in the sand because it was right where they’d be coming out of the water. They’ll still judge the next person they deem ‘weird’ but maybe, just maybe, they’ll remember back to the day when they called some guy a fruit loop for doing something they didn’t immediately know the purpose of.
As for you… the next time you see a child acting out, being seemingly total out of control, remember that that is exactly what Autism does to a child… remember that, at this point, 1 in 110 children have Autism. How many children are in your city? And most of all, remember… maybe that parent is to blame because maybe the child is not Autistic, but how bad will you feel if it turns out that the parent is on the edge of a cliff emotionally already because of just how hard it is to raise an Autistic child and your judgment, your hateful glance, your comments that you should really keep to yourself…. what if that’s what pushes that parent over the edge?
Don’t roll your eyes, it can happen. It does happen. If you knew that you were going to be told after that that child lost their parent, and are now having to deal with their Autism on their own… would you still be so willing to make that judgment?