This is Your Autism
Dear Jack,
As you know, you have autism.
Autism is many things.
It is a delay in communication and the inability to read social cues and obsessive, perseverative behavior.
It is limited interests, and trouble adapting to change in routine, and challenges with sensory processing.
It is anxiety, and uncertainty, and a life lived differently.
No two people with autism are the same.
You have a hard time reading social cues.
You jump around a lot.
You say whatever is on your mind.
You don’t mind if your shirts have tags, but you cannot tolerate the sound of a siren.
This is your autism. No one else in the whole world has it. It’s like a fingerprint, or the echo of your voice.
As hard as I try, I can’t quite capture you on paper.
Every week, I sit at my computer, and I try to describe the way you think, and feel, and act. I write about your glasses, and the unusual cadence of your speech.
Yet it is never adequate enough.
I don’t know how to help people see who you really are.
You love soda, and pancakes, and swimming at the YMCA on Friday afternoons.
You hate the beach.
You have a habit of picking your cuticles, sometimes until they bleed.
Every morning, you take a comb and painstakingly part your hair. You squeeze a dollop of gel into your palm, and you smooth your cowlick into place.
I cannot remember a time when I wasn’t trying to extinguish every single that makes you happy.
I tell you only one soda when we’re out for dinner.
I tell you to hurry up and finish combing your hair.
I tell you to keep your body still.
I never tell you I am proud of you.
I don’t know why.
Sure, I tell you when you’ve done a good job packing your lunch, and I admire your hair.
Why, just the other day I congratulated you for not blurting out that the cashier’s hair looked like a purple eggplant.
Every night before you settle into bed, I remind you that I love you.
But I never tell you I am proud.
Maybe I don’t know how to say it.
I don’t know how to say we are climbing a mountain and it’s cold and it’s lonely and we are alone and we are unsure.
I guess I’ve been trapped in this kind of haze for so long—the tasks of moving a child with autism through the day and keeping our wits about us and making sure it didn’t all come crashing down, that I forgot to consider the bright lights along the way.
Your first sentence.
A job stocking the soda cooler.
The way you squeeze my hand.
Maybe I’m afraid.
I’m afraid if I start to celebrate everything that is good and right and true, we will lose it.
It is tenuous, this progress. It is as fragile and delicate as a newly fallen snowflake.
Autism is anything but linear.
Because we have been here before, you know? We have been here where I thought the worst was behind us, and we were moving forward, only to be fooled again.
I admire you.
I admire the way you wake up in the morning and you get on the bus and you go to your special school. You come back in the afternoon and you shout through the house that you are home, until I come out from my room or my office or the backyard and I say, yes, Jack, I see you.
The next day you do it all over again—the school and the bus and the shouting.
I wish I could be more like you, to be honest.
I wish I could say exactly what I am thinking.
I wish I only ate food that tasted good on my tongue, and fed my spirit.
I wish I had a clear, authentic idea of who I am.
The very things I admire about you are the things I am working hardest to change, and if that doesn’t make your head hurt, I don’t know what will.
I have to do this. I have to do it because, well, I don’t always know why. I guess I have to do it so you have a chance to be everything you can be.
There are no shortcuts in this life of ours.
It’s not easy for you. I know this.
But you make it look possible.
I don’t know how far down the mountain we are, but I do know we’re moving.
My son. Look how far you’ve come.
You are unlike anyone else in this wide, wide world.
I am so very proud of you.