Our Story of Autism

What can I tell you that you don’t already know?

When you love someone with autism, your life is automatically different.

You notice how fast people talk, the way we shout and laugh and sneeze and, in general, make a whole lot of racket all the time.

Yet at the same time, our culture is built upon a series of subtle, non-verbal cues—head nodding at the stop sign, two-finger waves in the middle of road construction, the shoulder lift in the grocery store.

You realize airport security is a hard place to navigate.

The world is simply not made for an individual who has sensory processing issues, or language delays, or trouble reading social cues. And that’s just the practical side of it all.

When you love someone with autism, your heart can break and soar and shatter all in the space of a breath.

You discover a new normal, and it doesn’t necessarily include trophies, or diplomas, or great big weddings in a banquet hall.

Oh, we know all the clichés—God only gives you what you can handle—stuff like that. In fact, those saying can feel like a knife in our side at times.

When you love someone with autism, you make room at the dinner table, around the Christmas tree, and in the seat next to you on the flight to Disney. You make room for the random objects they’ve suddenly become attached to and drag around wherever you go, and the ceaseless white noise about the weather, or the barrage of facts about the Rainforest.

You always remember the day. The day a doctor officially named the reason your child was lining all those stupid trains up in a row on the rug and insisted the giant stuffed pig he won at a fair had to travel on vacation.

Even if you knew it was coming, even if you expected it the whole entire time, you still feel like someone punched you right in the stomach.

Because you always hope, right? You always hope the red flags that have been staring you in the face since day one are nothing more than you overreacting. I mean, every child develops on his or her own timeline, right?

Right? 

Right.

No babbling.

No eye contact.

No cooing, or patty-caking, or potty-training.

We know weird stuff—the path the moon takes as it journeys to fullness, the exact shelf in the pharmacy for Melatonin, and which jars of spaghetti sauce have the least amount of lumps.

When you love someone with autism, you understand just how arbitrary social norms can be.

I mean, why do we shake hands?

Why do women wear lipstick?

Or say hello at the beginning of a phone call?

The truth is, raising a child with autism is not so different from raising a child without autism.

You watch.

You worry.

You wonder if he should eat more salad and maybe watch less television.

It’s not so different. Except for the timeline.

Timeline timeline timeline we are running out of time there is no time.

You wish for a crystal ball to see where he is in first grade, in middle school, as an adult.

Where will he work?

Who will he be?

You know there is no such thing as fair.

It’s not fair that your neighbor down the street has a teenage son who hits home run after home run on the ball field, while your 15-year sits home alone every Friday night, organizing stacks of DVD’s.

Fair has left the building. Fair has no place in the business of autism.

When you love someone with autism, your marriage becomes a little more complicated.

See, instead of negotiating the whole he should finish more of his dinner turns into a screaming match about who can’t read a label on a jar and bought the marinara with chunky bits of tomato.

It is a marriage on steroids.

It is a marriage balanced on the precipice of a high, slippery cliff—one that feels as though it could dissolve over something as meaningless as spaghetti for dinner.

Autism might break you.

It should break you.

Don’t let it break you.

I love someone with autism.

His name is Jack.

I have a new normal.

There are things I can’t handle.

If I could do it over again, I would.

I am running out of time.

His favorite dinner is fettuccine alfredo with extra butter mixed into the noodles. He washes it down with a large glass of root beer.

Take that in for a second. Go ahead, imagine all the cholesterol, and the sugar, and the calories. Everyone knows soda is bad for your teeth.

The food thing is real, you guys. I struggle every day with the small voice inside my brain nagging at me how he should eat healthier, and perhaps even exercise.

I mean, am I responsible for his cholesterol and his teeth cleanings and his fitness for the rest of my life?

Why, yes. Yes, I am.

Then there is the other side of my brain, the part that likes to remind me he has so little joy in life. He loves food. Soda makes him happy. He isn’t overweight. 

Hypothetically speaking, is it better to live a shorter life to the fullest, or live into your nineties never ordering the fettuccine?

I know, I know. Balance. 

Let’s just say my son Jack is not a person inclined towards balance.

When he’s hungry, he is so starving he might die.

When he’s full, he can never eat another bite for the rest of his life.

What is my responsibility here?

Perhaps it is time to understand the things that make me happy do not necessarily make him happy.

He does not care one whit about swinging a bat during the third inning.

He wants good food and a lot of it and some days, the fight is more than I can manage.

He’s pretty good about brushing his teeth, I will say that.

The thing is, everyone has a story.

This is ours.

It is a story of a boy and pasta and arguments and fear and clarity.

Mistakes.

Forgiveness.

Hope.

I offer it to you.

Upturned palm and open heart, I offer it all to you, so you may see yourself in these words.

Do you?

Do you see me?

Do you see him?

Do you see yourself?

I will tell you our story, even if I don’t know the ending.