Note: Below is an article that ran in The Washington Post this weekend. You may or may not approve of Ellenby's language choices. Or what she says about her son. I was surprised to see a mainstream article that talks about the violence and danger that can come with autism behaviors. I haven't dug into the comments yet. I'm sure she's taking a drubbing from all sides, as I did when I wrote for WaPo. Have you been able to explain the COVID shutdown to your loved one with autism? If you are an adult with autism, how have you processed the changes?
My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?
Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.
The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.
But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.
And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.
Whitney Ellenby is the author of “Autism Uncensored: Pulling Back the Curtain,” founder of the charitable venture Autism Ambassadors and a former Justice Department disability rights attorney.