Autism, a word, please

Dear autism:

We’re going to kick your ass.*

I thought I could be gracious enough to at least let you know. That’s a graciousness, I might add, that you failed to offer when you slithered into our lives almost two years ago.

You like to think you hold all the cards, autism. Momentum, for one. Affecting 1in 110 kids now, you act like a tidal wave, washing over legions of families, sweeping them into an undertow of despair and hopelessness and financial ruin. Then you employ tactics like insurance coverage limitations, exclusions and denials, bureaucratic runaround, conflicting data and tribal-style factionalism within the autism community itself. (See exhibits A, B and C.) Oh, you’re good.

But we’re better. “We” being the families living with autism — the parents, the siblings, the extended family, and, of course, the kids themselves. The people whose love is fierce enough to prevail over all the obstacles in your bag of tricks. A year ago, when interviewed for a story about autism, I lamented that so much of treatment is throwing therapies and services against a wall and seeing what sticks.

Now I’ve learned to think of myself as half a firing squad, equipped with a substantial arsenal: Speech therapy. Occupational therapy. Behavioral therapy. Light therapy. Special education. Mainstream education. Pharmaceuticals. Melatonin. Omega-3s (going through four different formulations before finding a tolerable one.) A jogger trampoline from Play It Again Sports that I believe will be the best $15 I ever spend.

And when we get the payoff — like in the school conference today, when both the classroom teacher and resource room teacher were truly, literally beaming as they talked about our son’s progress this year, and how much they value him as a member of the classroom community — well, autism, as far as I’m concerned, the score’s 40-love. Only in this game, love wins.

* Written in homage to and in solidarity with Jo Ashline.

Delicate drop cap courtesy of Daily Drop Cap.

2 thoughts on “Autism, a word, please

  1. Well said, Cari. We all celebrate those successes. Much gratitude to you for sharing.

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