Our Side of Autism’s Story

I read an article about a teenage boy who took a girl with Down Syndrome to the prom. 

The piece talked about how amazing he was—how selfless and kind.

It touched a nerve in me.

At first, I couldn’t quite figure out why. I mean, what this boy did was very nice.

But it didn’t feel nice. It felt weird. It felt as though cloaked within the narrative were seeds of language suggesting a masked benevolence—a self-serving celebration beneath a brittle shell of kindness.

I didn’t always feel this way. Things used to be simpler for me. Once upon a time, I probably would have scanned this same article and not given it another thought.

I don’t have that luxury anymore. See, I have a special-needs son of my own. His name is Jack. He is nineteen. He has autism.

Imagine how it feels to have to actually praise people for spending time with your child. The one you rocked as an infant and spoon-fed applesauce and waved good-bye to on the first day of kindergarten?

Jack was born with autism. He was born with a brain wired for collecting data about movies, and limbs that twitch and dance on their own accord.

He had zero choice in the matter.

He was born different, and he didn’t even know it.

So, what do I want?

It’s hard to say. I mean, like everything that surrounds my complicated child, this issue is, well, complicated.

I know he isn’t easy. He can be difficult to be around at times.

He jumps constantly.

He thinks the government has created a conspiracy theory about Oreos.

He is very rigid and gets very, let’s say, annoyedif he doesn’t have ice cream every night after dinner.

He has no room for small talk. Empty pleasantries are meaningless to him.

He wants to dive right in with you, like a swimmer into the deep blue sea. He wants to know if your grandfather went bald at an early age, or if you have ever marched in a LGBT parade, or how you feel about pit bulls.

In the blink of an eye, with just a few questions, he’ll have you thinking about what it’s like to age, or gender equality, or animal rights.

So, what do I want? I don’t know.

Yes I do.

I want the celebration to stop.

I want people to stop patting themselves on the back for interacting with those who are different. Stop bragging about how your kid eats lunch at school with the girl who has an IEP. Stop using words like little friend. Stop praising one another for simply being good human beings.

Like I said, I didn’t always feel this way. But now I do.

A long time I ago I promised myself I would see Jack for who he is, rather than what he has.

Trust me, this is hard at times. There are days when the lines get blurred. I look at my tall boy with his blue sneakers and all I see is self-stimulation and rigidity and conversations about conspiracy theories.

There is so much I can’t do for him.

I can’t make his autism go away.

I can’t make the State of New Hampshire give him a driver’s license.

I can’t make a company hire him, or a bank give him a mortgage.

But I can make sure he travels through life with dignity and self-respect.

I can make sure this infant I rocked through the night and spoon-fed applesauce even though he spit it right back out and waved to on the first day of kindergarten as the small bus pulled away, knows that he is different, but he is equal.

He is not an act of charity.

He has value.

My son has something to offer. 

You would like him. I know you would.

You would like his slow smile, and the way his face lights up when you tell him your grandfather has a full head of thick, curly hair.

You would like how honest, and real, and pure he is.

You will never meet another person like him in your whole life.

Please, try to see our side of the story.