Tuesday, July 9, 2013

Autism Diaries: Hell is other people, II

J's just had two big moments celebrating the new heights of maturity to which he occasionally ascends. One was getting an iPhone for his 17th birthday--whereupon he let off a scream of joy the like of which I'd never heard him make. The other was riding public transportation to school all by himself on his last day of 10th grade, equipped with that very same iPhone.

Later that day, thankfully safe and sound at home, he reported that after he switched from the Blue Line to the Orange Line he figured out from the empty platform that he'd just missed the Northbound local, and so immediately crossed over to adjacent platform from which he took the next Northbound express to the stop where he knew it would have caught up with his usual train. Who'd have thunk that the relentlessly inattentive and out-of-control toddler we could barely handle in public in the late 1990s could have turned into such a resourceful and self-possessed teenager by the early 2010s?

But there's a rub. I'm nowhere near ready to let him go to school by himself on a regular basis. This isn't because I don't trust him; it's because I don't trust others.

I've said before that often the hardest thing about having an autistic child isn't the child him or herself, but how other people react. As many families with autism can attest, these others can include friends and members of the extended family who stop inviting you over because they don't want to risk having your autistic child in their house, or who resist making relatively small accommodations that might substantially ease the stress of family reunions and holiday gatherings.

But, on a much more regular basis, "hell is other people" is about perfect strangers. The people who stare or mutter amongst themselves. The people who react histrionically whenever your child bumps against them or charges past them or cuts them off or passes gas or makes weird noises or says something socially inappropriate. The people who zealously scold you or your child even when he's clearly manifesting as "different," and even after you explain he's autistic.

These people, like everyone else, surely talk the talk about how important it is to fully include and show kindness towards people with disabilities. But they would prefer that we families of autism keep our difficult children far away from their personal spaces.

My preferences are different. What I prefer to do is to react histrionically in return--at the same time that I make it a "teachable moment" for J.

"Look at all those people staring at you," I'll say, using lots of expression and making sure everyone concerned can hear me. "You were so loud that they've all turned around to look at you." Or: "Look how angry you made that woman. You need to be really careful not to accidentally touch people. They get really angry when you do that." My words are very much for his benefit: he needs to learn. But so do others.

Sometimes I'm more direct. The other day at the science museum I heard someone scolding him as he exited the Giant Heart.

"You can't cut in front of people like that," she was yelling.

"You shouldn't hold hands and block the way if you're going to walk slowly," J retorted before starting to bolt.

"I'm sorry, he's autistic," I explained. "Let me make him apologize." I grabbed him, steered him back, and made him say he was sorry.

"You shouldn't hold hands if you're going to walk slowly."

"No, say you're sorry."

"I'm sorry."

"Never mind," she kept saying.

But my position was, if you're going to make a big public deal of my son's behavior, I'm going to show up and make a big public deal of an apology. You can't just yell at my son and then march off on a self-righteous high.

The most hellish sort of other person, however, isn't the merely insensitive or intolerant or self-righteous, but the bully who preys on weirdness. And it's that kind of person who makes me not want J go to school by himself on a regular basis. Even though now he rarely even grazes people and only occasionally charges past them, he walks funny, he squirms funny, his posture is often funny. He radiates weirdness. In the eyes of certain types of people--particularly his same-aged peers--he has "kick me" written all over him. Given enough time, one of those groups of school kids who congregate on narrow train platform will notice that he's regularly unaccompanied. And I shudder to think of what they might collectively rally up the gall to do to him--even if he behaves himself perfectly.


lgm said...

It's great living in a first world country, isn't it. The behavior you mentioned has nothing to do with autism, it's the desire to pick a fight with defenseless prey in order to have a guaranteed win.

We haven't been back to the Liberty Science Museum since we were caught in the tunnel leading to the theatre with a religious girls middle school group. They were scream attacking all the preschoolers. (that's the move where they sneak up behind them, scream the ear-piercing scream directly into the target's ear, and then leave smiling like they didn't do a thing.) The gal that attacked my child was a bit suprised to be repriminded; after all her supervising adult was only three steps behind and didn't say a word to any of her students.

C Baker said...

I have to say, as a New Yorker, I find J's original behavior and then his rejoinder to be perfectly correct and sensible. If you don't intend to move at a decent pace, move to the slow lane and walk single file. Don't block traffic, especially at an egress.

Just because autistics sometimes are slower to pick up on social cues doesn't mean we're always the ones in the wrong, and I know from experience and observation that being treated like you ARE always the one in the wrong is killer on your self esteem.