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Owning It

My son is autistic. Thinking those words, writing those words, is somehow painful, but also somehow feels removed from where we actually are. My son is autistic. Saying it is nearly impossible. I find myself saying instead, “My son has an autism spectrum disorder.” This is somehow less daunting, less scary, less intimidating, less real. My son is autistic. He is. 

I don’t know why it is so very difficult to say those words. It’s like admitting this huge failure. I feel I’m letting that statement define him, or me. I struggle. My son is autistic. 

It is Autism Awareness Month. April now belongs to us as November does for Prematurity Awareness. I see the pictures of buildings and bridges lit up blue. They’re pretty. I see the Facebook profile photos changed to reflect a family in this world. We belong to this world. I need to own it. But it is a struggle. My son is autistic. 

I cry because he deserves the same attention we give to our former preemie as far as awareness and advocacy. Yet I find myself hesitant. I do not know why. I am proud of him. I am not ashamed of him. He is simply as amazing as his born-too-soon brother. But I can’t seem to take the step beyond dealing with it in our own familial world. I can’t seem to make myself take the stage the way I do when I speak about prematurity. I wonder if that’s because I don’t know his ending. I know Ry has succeeded beyond all expectations, beaten all the odds. We know his “outcome.” I do not know E’s outcome. Maybe that is what is holding me back. 

My son is autistic. I find myself qualifying that statement in my brain, even as I type the words. He is “on the spectrum”. Officially, PDD-NOS. But he is autistic. I will own it,  eventually. Maybe that will happen when I’ve reached the point autism doesn’t own me.

One thought on “Owning It

  1. I know what you mean. My son will start doing something strange and I’ll redirect him and everything will be all right for another few minutes. Then it starts again. Sometimes, when we’re out in public, I have to say, “My son is autistic.” People recognize the word but most don’t really understand what it means. They answer with vague smiles or a step backward.

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