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Sharing Messy Stories or When Autism got Tweetable 


Sharing Messy Stories or When Autism got Tweetable 

This summer there were at least three posts about children with autism that went viral.  I wrote about one in my monthly post on The Gloria Sirens, and how it reminded me of The One Question You Should Ask Yourself in the Middle of a Breakdown.

The posts were the kind of messy victory stories that I love — that adorable little boy in his cowboy suit breaking through to his first words.  The Universal Studios meltdown and deep breathing. I wondered how I would have handled our messiest stories if there was Twitter and Instagram back in the dark ages of the beginning of this millennia. 

When Henry was about five, we were in our Starbucks with a group of senior citizens. Henry was flapping a green straw — it was always a green straw which is why we were always in Starbucks. A tall, lanky gentleman with glasses got up from the group’s conversation to point at Henry and ask me, “Is that autism?  Is that what he has?”  

“Yes, how did you know?” I said. 

“I saw it on Diane Sawyer.” 

In that moment, I was no longer alone. I know it’s hard to believe but 20 years ago, it was unusual to see someone with autism. Collectively, we didn’t go out a lot. If you did see a parent braving the grocery store you probably wouldn’t have known what the deal was with that kid.

Other toddlers and pre-k kids had mousse in their hair and little khaki shorts with plaid shirts tucked in. Henry wore pull-on shorts and a t-shirt with marks on the neckline from where he chewed it. He had a scab on top of his nose from obsessively flicking his fingernail across the skin. I had the hollowed out eyes of someone always searching — for the next treatment, the next cure, his other shoe.  

We weren’t cute.  We weren’t victorious.  It wasn’t adorable.  It was filled with poop.  No, really. Some children with autism smear their feces. Henry was one of the some who did — on the walls of his room, on the keyboard of the desktop computer, into the CD rom drive. If you’re too young to picture a CD rom drive, imagine cleaning poop out of the port to your iPhone. 

Social media is filled with our sizzle reels while our blooper reels remain hidden from likes. So much of my early childhood parenting was more blooper reel than sizzle. I’m guessing that’s still the case for most families. But I’m hopeful that all of our stories will be more and more tweetable. That we’ll share the messiness in our lives along with the wins.  It makes those victories, and those meltdowns, richer for us all.