The story about United Airlines asking a family and their teenage daughter to leave the plane was all over the news last week. Some people described it as a new low for the autism community.
I’ve read so much about it that I really don’t have anything to add, except this: it scares the heck out of me. It scares me because it could easily, easily happen to our family.
I can picture Jack getting agitated on a plane over something I didn’t see coming; maybe he forgot his Chapstick or his headphones aren’t working or a little kid is kicking his seat from behind.
I’d probably flag down the attendant and ask for another bag of pretzels to distract him or a new set of headphones or suggest maybe he switch seats so he doesn’t make anyone else uncomfortable.
And he or she might look confused for a second, and then I might tilt my head towards my son and shrug and smile apologetically, “He has autism. Just need some headphones to avoid a huge meltdown.”
I read a lot of comments about the need for special training—autism training—so flight attendants and restaurant personnel and librarians and people in the post office know what to expect when they deal with a person on the spectrum.
When I read this, two things ran through my head almost simultaneously.
First I thought, really? Training, for autism? Is this population of people really so unusual and scary and exclusive that the world needs special instructions about how to interact and understand them?
At the exact same time I thought, what a fantastic idea! I would definitely buy a manual for autism, because I really need to learn more about it. Some days it feels so unusual and scary and exclusive that I don’t understand it at all.
Then I wondered who would write it. Someone who actually has autism, like Jack?
It made me giggle to think of my 11-year old son standing at the head of a long table in a conference room, conducting training and addressing the attendees with his trademark opening line, “Okay, okay, okay.”
“Okay. Okay. This is a OREO. Be QUIET. You are all talking for me TOO MUCH.”
Or maybe a mother, like myself? Sure, I have some experience with the spectrum disorder, since I have been living alongside of it for over a decade now. I started to put some notes together, and they looked like this:
In the name of research, and maybe for a little bit of my own amusement, I asked Jack about it.
“Jack, if there was one thing you’d want people to know about your autism, what would it be?”
“Okay, okay, okay. What is your favorite fast food restaurant.”
“Yeah, I already answered that for you. What should we tell people about autism?”
(Opens bag of animal crackers.)
(Thoughtfully puts six in his mouth.)
“What should we tell people?”
(Long, painful pause.)
“About for what.”
“JACK! AUTISM! What would you like people to know about your autism?”
(Another pause. I tap my pencil impatiently.)
“I am just. For a person. Stop it. The pencil sound.”
Maybe a doctor would be best suited for the task, someone who sees the full variation and scope of the spectrum disorder on a regular basis. But I think even researchers would have a hard time quantifying the autism population.
“Persons with autism spectrum disorder often don’t like bright light, but some don’t mind it.
For some, loud noises cause extreme distress.
Persons with autism may have trouble with wet food, such as yogurt. Some eat nothing but yogurt.”
It’s like trying to squash the universe onto the head of a pin. It doesn’t fit. You can’t begin to contain it all or describe it all or even understand it all.
In my mind, I picture a triangle. I am at one corner, Jack at the second, and the rest of the world—cashiers and teachers and flight attendants and doctors—crowd into the third.
Everyone has a side when it comes to autism, but how do you know who has the right angle?
Or maybe the triangle is more of a pyramid, with thick, heavy walls that block the view and the sound. Jack can’t see or hear the world and they can’t see or hear him and I am trapped somewhere in the middle, waving my hands for a new set of headphones.
Unless I’m scanning for a typo, I never re-read any of my work. It makes me cringe the same way looking in the mirror when I’m trying on a bathing suit makes me cringe, so I just glance quickly for anything glaringly hideous and walk away.
Last week a few media outlets reposted this piece I wrote about travel and autism, so I forced myself to look it over and make sure there weren’t any extra commas or missing words. And I saw this line:
Every day, I fight for his place in this world. And every day, I fight for your place in his world.
When I re-read this, I realized I am not in the middle of the pyramid. Rather, I am standing on top. I am trying to get each side to peer around the heavy bricks—to know each other and like each other, and if nothing else, respect each other.
This weekend we went to see Disney’s Cinderella. As I’ve mentioned before, Jack is all about anything with Disney and fairy tales, and he couldn’t wait to see the latest movie.
Saturday morning he was up by 6:00 am checking the movie schedules, even though he’d checked them at least three dozen times the day before.
“Cinderella. At 4:20. We will to go.”
For the entire day his emotional pendulum swung wildly between distress and euphoria; threatening to hit his 6-year old brother Henry with a ball one minute, stimming and writing out the snacks we should buy the next.
“This day,” he announced to the girl behind the ticket counter when we walked into the theater, “is my dream come true.” She stared at him blankly.
He led us to the very first seat in the very front row, the ones you have to crane your neck so you can see the whole screen. As soon as the movie started, he never moved except to pop his candy in his mouth.
But he shouted. He talked, he cheered, and when the prince slid the glass slipper on Cinderella’s foot, he stood up and clapped. He was all at once rude and happy and disruptive.
Maybe the United Airlines situation wasn’t a new low for the autism community. In fact, maybe it’s a high. After all, we’re talking about autism. We’re discussing it. We’re trying to soften the corners of the pyramid so it may look more like a circle.
I watched Jack take a long mouthful of his drink, with his eyes fixed on Cinderella in her blue ball gown, and I thought of the perfect introduction to my autism training manual.
“Once upon a time, a boy named Jack was born with something called autism.
He is one in eighty-eight people affected with this disorder.
Or is it one in sixty-five?
Or maybe one in fifty-two.
He is one of many.
Although we refer to it as a disorder, it really isn’t. It’s more of a condition, or a way of living.
Research demonstrates that people with autism share some common characteristics: sensory processing issues and restrictions in social interactions and rigid, repetitive behavior.
But that is about all they share. After that, they are as different as snowflakes in winter.
Jack may seem scary and unpredictable. His movements are sudden and abrupt, and his voice can sound too loud for the room.
But this boy, he is surrounded by people. And his people would never, ever let him hurt or bother or disrupt other people. In fact, his people spend an enormous amount of time planning and talking and forecasting to try and anticipate every side of the triangle.
He longs to see faraway lands—to ride on planes and sit on trains and swim in the ocean–and his people want him to see these things, to know life and love and travel.
In many ways, he is just like you. He is just like me. He is frustrated by change and he likes his food to be fast. He wants M&M’s with his movie, and the glass slipper on the right foot. He wants a happy ending that is full of promise and hope.
He is, in his own words, just for a person. And if you can remember that, well, that’s probably all the autism training you’ll ever need.”