In her funny and moving essay, “A Child Blink,” Janet Kay writes that “in spite of the abundance of literature on the subject, there is no clear road map for communicating with an autistic child.”  It takes time and patience to enter an alternate world, a willingness to suspend judgment.

I’ve been thinking about that lately, about how imperfect words can be, how rigid we’ve become in our civilized state to exclude the growl from what’s considered acceptable vocabulary, to cast aside phrases like “I’m a tiger”  about an exciting gift because it’s not immediately clear what that means.  Janet listens closely so she knows the emotional language of her son Michael. She knows the same phrase could also have meant “he was hungry or angry, or that he’d just bee to the dentists, and his teeth felt clean and sharp.”

Though he counted and read early, Michael didn’t bother telling

us. In fact, he didn’t bother telling us much at all. His earliest

words and phrases came two years too late and were comprised of

clipped consonants, scant vowels, and very little information. The

mantra “A sun my eyes” was first used on sunny days and later for all

days outside. The phrase “A Bonnie” first described our cat, but was

later used to talk of any animal. The surprising words, “Two three,”

were spoken over and over for twenty minutes straight as one-yearold

Michael built a tower out of twenty-three blocks. It was the last

time we would hear him speak for years.

But the truly troubling part of Michael’s disability was always

his nonverbal attempts to communicate: running away, screaming at

close range, throwing things. Once, after hurtling a chair at a preschool

classmate, Michael cried for an hour before he managed to find

words for his remorse. “I didn’t know a chair could break,” he said.

Years later at school, he snuck an extra ravioli from the lunch

line and hid it in the pocket of his pants. At recess, his teacher caught

him trying to bury the evidence. Lacking an appropriate response,

Michael simply growled at his teacher.

We allow ourselves to laugh behind our hands. There is, after

all, a funny misdirection that courses through Michael’s mind. His

actions are as stupefying to us as the consequences of those actions

are to him. Furthermore, the “real world” is just as ridiculous, as Michael

is quick to point out. “Look,” he said recently as we were riding

in the car. “There’s a professional building. The other buildings must

feel so inferior.”

It lightens his load and ours to have so refreshing an outlook.

But there’s still a tragic side to all this. And for Michael, the real

tragedy lies in the diagnosis itself. He’d rather stumble through life

without it. Often he’ll be seen darting through halls at school like

he’s being chased by a gunman. Or sometimes he insists we take a

complex driving route, so that someone who knows him won’t see

him. Perhaps if he moves fast enough around corners, his diagnosis

won’t catch up with him.

After all, what has autism ever done for him? Michael’s been

running from the disabling trappings of his diagnosis for his entire

life. He’d rather have friends, thank you very much, than adults following

him around with clipboards.

(The essay continues in the print version of the book.)

I learn something new each time I read someone’s story. In Janet’s update, the phrase ‘bubble-up boy’ floated from the screen and has stayed with me ever since. She writes:

Sometimes I wonder if “the child” ever blinked.  When he was still living with us, Michael provided constant surveillance, noting everything we said and did almost round-the-clock.  My husband and I would escape him once a day when he was in high school to plan — word-for-word – that night’s dinner conversation in private, going to great lengths to follow Michael’s rules:  “Don’t ask open-ended questions.”  “Better yet, don’t ask questions.”  “Don’t look at him directly.”  “Don’t address him directly.”  “Don’t touch.”  “Don’t compliment.”  “Make a statement with your head turned while you’re standing at the stove.”

Our home was like a bad reality show then.  The cameras were always rolling. The lines were always stilted.  And, in spite of careful scripting and staging, our performances were always abominable.  We could not keep our son from escalating.  We couldn’t get him to eat or sleep.  We couldn’t draw him out.

And so we moved him out.  When Michael was 19, we took him to Target to buy towels and cooking utensils.  We put down a security deposit on a one-bedroom apartment ten miles from home.  We had a pizza delivered to his new digs, and we said our good-byes.

A therapist of Michael’s once told us that our son was a “bubble-up boy,” that left alone, he would eventually rise to the top.  And that’s exactly what he did.  Within the first six months of having his own place, Michael started making good grades at the local community college.  He started making fried rice in his wok.  He started making friends.  And we started making sense of it all.

Michael had always inherently understood the unique world he was born to, and he’d done everything in his power to maintain and protect its boundaries.  When we finally gave him the time and space he needed, Michael started to grow that little world of his until finally it spun into our orbit.

We see Michael two to three times a week now.  And every time, it feels like we’ve hit the fast-forward button.  We blink, and there he is again, standing in front of us straight and tall with a genuine smile on his face.  He tells us about the Italian zombie movie he’s just seen or the new recipe he’s made up – Spaghetti with brown sugar, anyone? And I honestly can’t tell whether I’m getting a glimpse into Michael’s world or he’s finally peering into mine.  Either way, it doesn’t matter.  I’ll stay in this place for as long as I possibly can.

Janet Kay works as a creative director and writer in St. Louis, Missouri. She is at work on her first novel.