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The Autistic scream "We're still here!"

by JohnBigJohn on April 2, 2013   |  FacebooktwitterTumblr

Five years ago I wrote the following piece while blogging on MySpace. Yikes..MySpace....I'm still on some serious antibiotics because of that place.

Anyway, this is what I wrote for World Autism Awareness Day in 2008. I wrote it from a very scared and hurt place. It is all just as relevant today as it was back then.

"No Matter What"

I am afraid.

I am afraid of autism.

It is scarier than a drunken bear armed with a shotgun

who has a desire to watch me dance.

Did you know that autism "steals" one child every twenty minutes?

That is a bunch of kids every day….why does it need so many?

Many of these children were considered to be functioning normally…

And then one day….

They just stop…

They stop talking.

They stop looking at you.

They stop smiling.

They stop being a part of the world.

They seem like they are gone…


Every twenty minutes a parent has their heart broken.

They cry.

They scream.

They grieve that their child may never…

Say "I love you"

Get invited to a birthday party.

Score the winning touchdown.

Become Prom Queen.

Get married.

This is what scares me the most about autism.

That I will grieve the loss of my son…

While he is still here.

While he is fighting to get out of the well he is trapped in.

He does not need my bouts of self-pity.

He needs my hand in his as we walk the maze together.

I am afraid that someday autism will rob me of my hope.

That is it’s only real power.

I no longer hope for a cure for his autism.

Instead I hope a cure for my arrogant need for him to be "typical".

There is no cure for him.

For that I am grateful.

If he were no longer autistic then he would no longer be


I realize now that my "war" with autism

Was fought not to force my son to join my world.

Rather it was waged for me to get a permanent Visa…

And join his.

Autism will touch more families tomorrow

It is relentless

The rates will go up.

The cause of autism will always be violently argued.

Someday you may have someone close to you diagnosed with it.

Don’t be like me.

Don’t grieve.

The child is still there under all of the murky water.

They are just waiting for you.

They are waiting for you to jump down in the well with them.

To celebrate

Their life.

Their hopes.

Their autism.

More than anything the only thing they want is for you to

To hold there hand and say.

"I am here.

No matter what"


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