Do We Need Labels?

The other day I saw an article that said it was time to get rid of the label special needs.

My son has special needs.

His needs are special.

He has a diagnosis, or a label. 

He has a label because he has autism and we had no other way to explain his unusual behavior and speech delay and anxiety.

This isn’t a bad thing.

How can it be a bad thing?

The day he was diagnosed with autism, I was actually relieved. Can you believe it? I was relieved to have a name for the screaming, and the way he traced the floorboards with his finger, and the deep, growing panic beneath my ribcage.

Of course, I was sad. I was scared. I was overwhelmed and uncertain.

But when I zipped up his little blue coat and walked back to the car, I felt relief.

No, that’s not even it.

I felt a tiny opening in my chest, like a flower blooming.

Hope.

Jack is fifteen now.

We have good days and bad days and regular days and hard days.

Sometimes I am sad.

Sometimes I am frustrated. 

Sometimes, I hate the label.

Usually I hate it when I’ve spent the morning filling out forms or making phone calls and the word autism swims before my eyes and I remind myself those six letters are not letters at all.

They are the sail of a boat, billowing in the sunlight. They lead us to dry land.

See, these six letters take us places. They take us to the best doctors in the state and to research facilities and services.

A-U-T-I-S-M

Have you ever played that game where you take a word, and make a bunch of other words out of it?

Autism

Sit

Sat

Mat

Mist

Must

Stim

Mast

Sum

Jack could not sit and the teacher reported he never sat once not even on the mat and he couldn’t calculate a sum during math it’s like he’s lost in the mist he must learn to behave all he does is stim let us hold onto the mast as we sail this most uncertain sea.

I suppose you could argue that a label is bad for his self-esteem.

He knows, that’s the thing. Even before he understood his own diagnosis, he knew he was different.

Without the label, you might think he is rude, or impulsive, or obnoxious.

Weird.

Strange.

Quirky.

Unfriendly, abrupt, loud.

Stupid.

Listen, I catch myself too. I start to feel twitchy and impatient when he’s trying to explain for the hundredth time why we need to make popcorn, and then I take a deep breath in through my nose and I remind myself he has autism.

He is not trying to annoy me, or make me late, or misbehave.

His brain is simply wired differently.

This isn’t a bad thing.

How can it be a bad thing?

There is a light in him. It is brighter than you can imagine.

But you wouldn’t see it if you didn’t know about his autism.

You would overlook it altogether.

A label is just the beginning. After that, the real work begins. I didn’t realize this when I was zipping up his jacket and  buckling his sturdy little body back into the car seat. 

We had the diagnosis.

We saw the specialists.

We scheduled the services.

Yet it wasn’t enough. Something was missing.

I sat with my son in our little boat and watched the white, white sail in the breeze.

Together, we journeyed from appointment to appointment, learning about social stories and sleep strategies and sign language.

And as we bobbed along the waves, I looked up at the orange sun, and I realized I had to build a bridge.

I don’t know anything about bridges. 

I don’t know how they are made, or how long it takes, or what materials I need.

But I do know how to tell a story. 

Jack was off from school yesterday. We decided to brave the cold and the snowflakes, and go out for lunch at the place we usually have lunch when he has no school.

It’s a little restaurant in town, and we always sit at the counter. Jack orders chicken fingers and I get a turkey wrap and I agree he can have soda.

He loves soda.

Every single server knows him. Every single one smiles his way when we sit down, and says, chicken fingers, right Jack? With extra fries?

And he nods back and he rubs his hands together in excitement and he says, yes, the chicken fingers.

While we wait for our food people we know from town come over and to say hello. They lean forward to catch what he has to say. They smile. 

They know. They know about the label.

They know he has autism.

They don’t care.

They love him still.

Or maybe they do care.

But they love him still.

Perhaps—just maybe—they love him because of it.

Do you see? Do you see how I have been explaining him all of these years and people know and people don’t care and they actually light up and smile when they see this boy of mine?

Yesterday, I watched him puff up with pride. I watched his eyes shine. I watched him feel important, if only for a moment.

Please, let him have this.

Let me have this.

Let it be.

Sometimes, all it takes is a label to change the words.

This is Jack.

Jack has autism.

It can be hard for him to sit still.

The other day he sat on a mat for nearly ten minutes.

We let him jump and stim first because his body needs it.

Every day, he holds tightly to the mast. He takes us through the choppy water until the mist clears.

He is greater than the sum of his diagnosis.