My Autism

Note: I wrote this post after spending the day with my 12-year old son, Jack, at an amusement park. It is based on things he says and does all the time.

I had him read it before I posted and he reminded me the woman’s shirt was really more red than pink.

This week me and my family went to an amusement park. It’s the kind that has water slides and roller coasters. My mom and dad surprised us in the morning by saying Hey we’re going to an amusement park get in the car!

It was very crowded and hot.

It was loud.

A lot of people think someone like me—someone with autism—wouldn’t like a surprise trip to an amusement park. But I don’t always mind surprises.

When people think of autism, a bunch of words pop into their brain like bubbles—words like rigid and speech delay and deregulation and perseverative behavior.

But see, autism is very, very different for every boy and girl and man and woman who has it. In fact, there are probably more kinds of autism then there are bright, twinkly stars in the dusky summer sky.

This is mine.

I am serious.

I am thoughtful.

I am anxious.

I am funny.

I am rigid but I can be flexible.

I once didn’t talk but now I do.

I am all the time changing.

As soon as we got to the water park, the first thing we went on was the log flume ride. It had little boats that looked like real logs but they weren’t. They were fake logs.

We waited in line for a long time and I stayed busy looking at my bug bites that I got the night before from sitting on our front porch. A woman in a pink shirt who looked a little old was trying to get out of one of the log cars. Her leg was stuck. We all waited and watched and everything got very quiet.

All at once she fell out of the log car and tripped. She landed on her knees with her hands out in front of her. She looked up at all of us in the line and she smiled strange smile and tried to laugh.

“Oh! Look at me!” She said weird-like. A few people waiting on the line laughed a little too.

As soon as she got up and walked away slowly, I turned to my dad.

“Why is that. For funny. That is not. For funny.”

He said, “I know, buddy. It isn’t.”

What he really wanted to tell me was how some people laugh when they feel nervous-hurt-scared-unsure. But he didn’t know how to explain it.

I never laugh when I feel nervous-hurt-scared-unsure. I just mostly scream loudly.

I ask a lot about our schedule at home. I like to know what we’re having for dinner, and what we’re doing on Thursday afternoon, and whether or not we have to go to Hannaford’s.

I have the kind of autism that makes me put my fingers to my ear every time my mother says let’s play it by ear, okay Jack? 

Playing it by ear is dumb. Everyone knows you can’t play your ear.

I am still swearing sometimes.

I do not understand why f^%$ is a bad word but chicken is not. This makes no sense to me. A word is a word is a word. I want to know who is in charge of making words bad or good. I asked my mother this but she didn’t give me an answer. She just smiled her funny smile.

I don’t really know, Jack-a-boo.

I see the world inside out and upside down. It makes me consider things the way they really, justly are. They make me know the truth.

This is my autism.

A lot of times it looks like I am not interested in what is going on around me. I disappear. I kind of stare with an empty look on my face and I listen to talking in my mind. Sometimes, I even talk back.

But I am in here. I hear everything, and I see it all.

This is my autism.

I regret it.

I say this a lot. I say I regret my autism—as if it’s a movie I took out by accident from Redbox or the time I ordered chicken fingers in a restaurant but they brought me a cheeseburger instead.

But my regret, it’s like a small child tugging on my sleeve all day long. It whispers in my ear and begs for my attention.

I’m not going back to public school this year.

I am very, very mad about all of this. I bring it up a lot of times a day to remind my mother.

I AM going to public school!

I want to say it so then maybe it comes true, and I can go back to school that I know, the one where my big brother Joey went last year.

This is my autism.

Sometimes I make bad decisions.

Like when I kicked my teacher.

And I screamed mean words.

And I said I hated her.

I felt very badly after I did all those things. But in the very minute they were happening, the world was bright and loud and scary and I felt like a train going full-speed clattering down the track. I could not change my direction.

My mom says we did the best we could.

She says I have to forgive myself.

She says it is time to try something new.

She says to imagine my autism like a square. It has perfect sharp edges and long, straight lines.

Squares are awesome.

They are important.

Squares are delicious Sicilian pizza in New York City and windows that let in bright yellow sunlight and colorful gift boxes with surprises when you open them.

The earth, however, is round like a big circle. And circles are good too.

They are the sun and the moon and chubby baby faces. They are pancakes, and the wheels on our car, and plump, fresh tomatoes out of my grandma’s garden.

She said it is time now to try and make my edges a little bit softer—more smooth-like. It is time quiet the child and ease my regret and find peace in my own self. It is time to figure out where I fit in the world of circles.

But at the end of the day, I can be any old shape I want, because this is my autism. It is mine alone–just for me. I can make it however I want.

Something else happened at the amusement park the other day.

We were standing near a ride called Untamed. It was a roller coaster that went straight up and straight back down again. I thought I wanted to ride it and I got in line and then I watched it go straight up in the air while all the people riding it screamed. I changed my mind.

There was a boy with a red hat on and he was with his mom and his dad. He was next to the measuring stick thing that tells you if you are tall enough to go on the ride or not. He was standing on his tip-tip-toes to try and reach the line.

“He is. Not for tall enough!” I shouted.

The mom looked at him reaching on his toes and she laughed out loud and said, “Jacob, that boy is right! You’re not quite there yet.”

I looked fast-ly back at my mother and I smiled a little smile to her face.

I was right.

I never feel right.

I feel bossy rigid rude hard square not easy round and I can’t find the good words only the wrong ones. I am the bubble in people’s brains when they think of autism.

This time, standing under the hot-hot sun next to a boy with a red hat, I was right.

I hear all you say.

I’ve heard all you said.

I am in here.

Come and find me.