My son Jack has autism. He is seventeen.
For seventeen years, I have tried to climb inside his mind and understand how he thinks.
I listen to music through his ears.
I watch movies through his eyes.
I attempt to tells his story as if it is my own, because in some ways it is.
Once upon a time, when my son was diagnosed with the big scary all-in-capital-letters Autism Spectrum Disorder, I had to figure out who he was, and who he could be. Then I had to figure out how to explain him to the world.
So, I told everyone he had autism.
I told them how he needs to have dinner at the same time and he can’t wear shirts with tags and he is very smart even though he speaks slowly.
For the longest time, I told people that my son is different, but not less.
After a while I got tired of that explanation. It wasn’t fair to him, you see.
Now I say he is different, and he is equal.
I am determined to spread this message far and wide. I will do this for as long as I have breath in my body and a beat to my heart.
I will not fail him.
He is equal.
Hi. I am Jack. Do you remember me?
You used to come into my classroom and eat lunch with me and some of the other kids. We played games and took turns asking each other questions.
After lunch was over, you left and went back to your own teacher and your own friends and your own day.
I wish I was more like you. I wish I had your easy walk and your fast words and your quick laugh. I wish I could open the door and stroll back out into the hallway.
I know you don’t wish you were more like me. No one does.
No one wants to jump around the room because they can’t keep their bodies still.
No one wants to feel tied so tightly to a schedule that the world might spin right out of control if dinner is five minutes later than usual.
No one wants to take medicine to sleep at night.
No one wants to ride the short bus to school.
No one wants autism.
Autism follows me wherever I go. It is like the PS at the bottom of a letter. When people say my name, they say it like this:
Oh, there’s Jack. (He has autism.)
Here comes Jack. (You know, he has autism.)
There’s this boy Jack at school. (They say he has autism.)
No one ever says, Oh, there’s Jack. He’s good at baking.
Or, I know this kid Jack. He has a great memory.
Or even, There goes Jack. He’s a nice person.
I am, though. I am nice. And I make very good cakes and brownies, and if you tell me when your birthday is, I’ll remember it forever.
Autism is part of me. Yet I am much bigger than this diagnosis. I am an entire person, with goals and dreams and hopes of my own.
I want to be a record producer in Los Angeles.
I hope one day I can drive a car. But right now my mother says we have to wait and see.
You and me are different, but we are equal. We both deserve good things in our lives, like laughter, and love, and music. We both deserve respect. We both want to live happily-ever-after, whatever that may mean for each of us.
Somehow, through a twist of the genetic lottery, your brain got wired one way and my brain got wired another. I need small white pills so I can sleep, and I need kids like you to volunteer to eat lunch with me, so you can model how to make good conversation.
For just one moment, let me out of the room in which I am boxed. Let me walk by your side, free from the shame and confusion and panic that follow me around all day long.
How, you ask? How can you release me from autism’s unyielding parenthesis?
Well, that’s easy.
Don’t assume I am dumb.
Don’t assume I am bad.
Don’t assume I am weird.
Treat me the way you treat everyone else. Do not make me your pet.
Do not share stories about how cute I am, or tell people I am your little friend.
Talk to me. Learn about me. You see, there is a reason for everything I do.
I jump because it feels like there are a thousand ants crawling all over my body. This is called self-stimulation.
I take medicine to quiet the slithering snake that winds around my soul each day. This is called anxiety.
I need my schedule because it makes me feel warm and calm and safe, like I am wrapped in a heavy blanket on the coldest winter day. This is called rigidity.
I ride the short bus because the big bus is too loud with all of the talking and shouting and I get overwhelmed and I start to sweat. This is called sensory overload.
The next time you take a bite of chocolate cake, picture me in my kitchen, mixing up batter and pouring it into pans. This is called awareness.
Tell your friends about me. Tell them how much I long to drive a car and go to college. Tell them I am whole, and good, and right. This is called advocacy.
Our journeys are not the same. I know this. Still, I hope you will walk beside me, shoulder to shoulder.
And if I fall behind, please wait for me.
After all, we are in search of the very same thing—a happily-ever-after of our very own.
This is called different, and equal.