My son Henry helped me write this post. Over the course of the last week, I asked him all kinds of questions about his brother Jack and his autism.
I listened to him talk about his memories and his experiences and his feelings, and I tried to piece it all together and paint the complicated, messy portrait that is brotherhood.
My name is Henry. I am eight years old.
I’m in third grade, and I like drawing, and Legos, and Star Wars.
Spaghetti and meatballs are my favorite food because I’m Italian.
My favorite place to visit is New York City. It glows all up at night and becomes beautiful. Also because I’m a Yankee fan.
There are five kids in my family, and I am the youngest. Being the youngest is the worst. I’m always last for everything. Everyone in my family has a nickname–they call Joseph Joey, and John is Jack. Charles is Charlie, and Rose is Rosie, or Rose-a-pose.
I don’t have a nickname, so I changed my name to a new name. I am now Hendrixon. I write it on all my papers at school. I like the way it sounds.
He loves the movie Pirates of the Caribbean and his music. If he could, he would play his music every hour of the day, but usually my mom tells him he has to shut it off so she can think straight.
He bakes cakes a lot, and makes us all popcorn at night with a lot of butter for when we watch America’s Got Talent. We all sit together and watch it except Jack never does, he just makes the popcorn and then he goes to another room by himself. He likes to be alone, I think.
He doesn’t talk much, but when he does, he sounds a little like a robot. I don’t know how to explain it, except to say his voice doesn’t go higher or lower. Unless he’s screaming. Then it gets really high and loud and oh boy, you don’t want to be here for that.
He is the smartest person I know.
He’s not really like me. He’s not really like anyone.
I’ve known about Jack’s autism before I had the words to say it. When I was little I remember trying to look for clues about him, like they do on Scooby Doo. I watched the way he moved and how he took medicine at night and I listened to what my mother said to other people.
This is my son, Jack. He has autism.
Autism means a lot of things for Jack. It means you have to talk slowly to him so he can catch what you are trying to say.
It means he doesn’t sleep too well. I know this because we share a room. We have two sets of bunk beds, and I’m on the top of one and he’s on the bottom of the other. Sometimes I hear him in the middle of the night. He talks to himself and he moves around a lot.
And he’s afraid of stuff. For a while he was afraid of dogs, and then he was afraid it was too cold outside and he would freeze. Now he’s afraid of being alone upstairs in our house. My father says it’s because he has very bad anxiety.
One time I saw a man who had autism. We were at a wedding. I knew because of the way he walked and how he looked around the room fast, like something might jump out at him because Jack does the same thing.
His name was Josh.
Josh was there with his brother, and his name was Eric.
I never saw a grown-up man with autism before. It made me think about how Jack will be a man one day too.
The wedding was very fun. We took a plane to get there, and after the bride and groom got married we danced, and there was cake and lots of soda we could drink. You just walked right up to the lady behind the bar and order whatever you wanted and it was all free. I ordered sweet tea one time and a Shirley Temple another time.
When it got late, I sat on my mom’s lap. I don’t do that very much anymore because I’m big now, not a baby. She was talking quietly to the man Eric. In between their talking I asked him a question that had been in my head all night.
Did you and Josh fight when you were kids?
He smiled slowly and he leaned in close to me and he answered.
Yes, Henry. We sure did.
I was glad to hear that because Jack and I fight sometimes. I always feel bad but I can’t help it because he makes me so mad, like how he plays the radio in our room at night and I’m trying to fall asleep.
Next I told Eric that I do not care for Jack’s autism, but if someone makes fun of him I will punch them right out on the floor. He smiled again.
Don’t worry. You’ll teach your friends how to understand him.
Then he told me a story about how, when he and Josh were little boys, their mother would put pieces of melon on everyone’s plates while she was cooking dinner. And Josh, well, he would just grab the melon off of one of the plates and sit right down on the floor and eat it.
I guess he was very hungry and he couldn’t wait for dinner. That happens to me too.
Jack doesn’t like melon. The only fruit he likes is applesauce.
I think when you have autism your brain is probably a different shape than everyone else’s, and the wires that connect it to your body are on a different path or road than ours. That’s why Jack jumps around like he isn’t in charge of his own arms and legs.
It’s why he repeats the same sentences over again from movies and songs. We say he is scripting when he does this.
Sometimes he can get a little crazy, like if we go somewhere crowded, or there’s a loud noise that he didn’t expect. He will scream and stomp his feet and flap his hands around his ears like there are a lot of bees buzzing around him.
I get scared when he acts like that. My mother said he is deregulated and if we all stay calm then he will calm down too. It doesn’t always work though.
The day after the wedding we had to go home. We were all tired. I thought many times about what Eric said about his brother Josh.
On the way home Jack and I sat next to each other on the plane. And once we got into the air, I told him one thing. I said Jack. You are a very good brother.
He didn’t say anything back to me, he just looked down at the floor. But that’s okay. I know he heard me.
I don’t like melon either.