AUTISM AWARENESS: What is ‘autism’?

I’ve been though different stages with autism.

Phases where I knew what autism was.

Phases where I didn’t know what autism was.

Phases where I knew what the autistic in my life needed most.

Phases where I had no clue.

Phases with gluten and fish oil and probiotics and bee pollen.

Because I knew what autism was.

Phases where I didn’t care and just wanted to sell a kidney so that I could buy us a cabin in the woods away from therapists and doctors and the sliding scale of typicality where we could live off dandelions and chickens in peace.

Because I didn’t know what autism was.

And I didn’t know what to do with not knowing.

Phases where I was desperate and manic and stayed up all hours researching instead of sleeping because there was a new study posted online. (NOTE: correlation is not causation. Google it)

Because I’m always looking for ‘’the’’ answer.

And because sometimes I’ll take any answer.

Because I want to know what autism is.

Because My Boy’s autism comes with some scary stuff:

Self-harm.

“Seizure-like activity.”

Bizarre physical reactions to food.

Aggression.

Lost speech and motor and language skills. Lost potty training. Lost self-care and self-awareness. So much loss and re-gain that it’s like living Groundhog Day over and over and over. ”Didn’t we already learn this?” Because, regression.

And bolting.

Bolting is a thing.

We halter. We have Road IDs on his shoes. Labels in his clothing.

Profiles at the local police and fire stations.

And I’m teaching him to say, “My name is Boy. I am autistic.”

Because he can’t recall my name yet: I’m just Momma.

And he can’t recite my number. And I promise you “I live on Boy Street on the planet Mars” is not correct.

But that isn’t all I teach him.

I teach him more important things.

And I tell him more important things.

I tell him he’s wonderful.

And I love him.

And he’s a miracle.

And he’s awesome.

And somehow, in the jumbled up brilliance that is his mind, all of these things make sense.

No one description of him is mutually exclusive.

He is all of these things:

He is autistic.

He is a miracle.

He is awesome.

So today it doesn’t really matter what autism is.

And it doesn’t really matter what autism isn’t.

Not today.

Because “autism” is just a place we go to sometimes.

Me: What is autism?
Boy: It’s a store we go to sometimes.
Me: It’s a store we go to sometimes?
Boy: (Nods)
Me: Are you autistic?
Boy: (Nods)
Me: Yeah. What does it mean that you are autistic?
Boy: God makes us that way.
Me: And what do you think about that?
Boy: It’s awesome.

#AutismAwarenessAndPizza


#SpectrumMom

One comment

  1. I love this. My two boys with autism are different, as they all are, but I relate to the knowing too much/not knowing enough about autism. Thank you for your writing.

    Liked by 1 person

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