Tokenism and The Real Cost of Writing About Autism

I’ve provided you with your token autistic. I’ve been complicit in this, I know that. In an attempt to raise awareness (whatever that means), I’ve sold you a picture of autism. It’s one picture, it’s our picture and for what it’s worth, it’s been as real as we can manage. You can watch and love her (from afar) and it allows you to feel charitable in a sense. You and your good heart can find pleasure in cheering on her successes and mourning her failures. I don’t mean that to sound like an attack in any way. I feel the same way you do. I let inspiration porn warm the cockles of my heart and I dutifully share on social media as if it makes me worthy in some way.

However, because my little girl is real, and so is her autism, I find myself reflecting, often, on whether writing about her offers her anything more than a really good-looking fan club. (You see how I’m trying to win you back after basically insinuating that you feel morally superior because you enjoy following the adventures of  a small blonde autistic girl.)

Why am I selling you autism? More importantly, why are you buying it?

Before I attempt to answer, I’d like to describe for you, the last two days. The school year has ended and now that I get to play stay-at-home mom for a summer, I’m in charge or driving Miss Kate to her summer camp. After a terrible experience last summer, where we thought foolishly that Kate could manage the unstructured day at home with me and her sister, we decided, though very expensive, a summer camp would be in everyone’s best interest.

Kate spent eight months having her father drive her to school. Two days ago, I took over the driving, and rather than school, the drop off is her summer camp. Though she adores her camp, the two major changes in her morning routine have upset her to the point of extreme tantrums each morning. Her older sister and friend watch as I wrestle her into clothes and carry her to the van. She fights and screams and no sooner have we turned the corner out of our subdivision does she stop crying and accept her fate. Three minutes more and she completely forgets our fight and spots a deer on the side of the road. “Mama, that deer is probably called King of Bones.” she said, with no explanation and a little smile on her tear-stained face.

She doesn't mean to be difficult. She really doesn't. 

To get to the point, here I am, again, telling you about her confusion, her ‘bad’ behavior and our somewhat futile attempts to ease her through these brutal and confusing transitions.

If you’re a regular follower you might expect another story soon, but a funny, heart-warming anecdote this time. Something to make you smile and give you faith that autism or Kate’s autism, in any sense, isn’t so terrible after all. And I’ll likely provide that, all the while wondering if I am doing her any justice at all. Is this all bullshit? Am I costing my little girl her privacy, her right to grow up and have some mystery about her childhood? 

Sure, Kate is a ham. In fact, she adores to hear of how I share her stories with you. Is that the aggressively social symptom of her autism or does she really enjoy sharing her world? How can I know?

I just really don’t want to get this wrong. You know? I don't want to cost that little girl more than has already been taken from her. 

I’ve decided, I guess, that, for now, sharing is helping her, and me, and most of all you. I have to tell myself that you’ll be more patient, more understanding, more involved when it comes to autism in your own life. I have to believe that Kate's adult life will be made easier by the advocating we do now. And, I have to believe that that is enough.

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