Autism Vox

Alternative Normalities

by Kristina Chew, PhD on January 27th, 2008

This is the name of an art exhibit “insight into autism and beyond through the artworks of Donna Williams” in Adelaide (Australia) that runs through the 12th of February. Williams is an artist and author of autobiographical books about her life with autism, textbooks about autism and poetry; you can go here for more information about the exhibition.

“Alternative normalities” fits in with the flow of things around here. A few years ago, I mentioned to a colleague at work (he was older and has no children) that my entire day revolved around one moment, when Charlie’s bus shows up. In passing, I said that I lived on “Charlie time” and I guess I was not successful at conveying how glad I was to be standing on the sidewalk when the bus pulled up, as my colleague and some others smiled, a bit nervously. But living on “Charlie time” is just a way of life—an “alternative normality”—-that I’ve learned over the years of taking care of Charlie, and this was reiterated to me on Friday night.

An old friend of Jim’s was driving to New York from where he lives now, in the South; Jim contacted another mutual friend and made plans to meet one friend, pick up Charlie and me, and then pick up the other friend at the train station. But the one friend who was to take the train did not give Jim his cell phone number and Charlie’s ABA therapists came late because they ended up staying at another child’s house longer than they were scheduled for…..and Charlie got upset because the therapist who usually comes at the end of the week has taken some time off because his wife just had a baby……..Suffice it to say, we were an hour late to pick up the one friend at the train station. Jim took a variety of short cuts and amid the jerking motions of the car, enquiries about how our friend’s daughter was doing, Charlie worrying where one of his gloves was, and Jim worrying about how late we were—and sitting in the right-side backseat of the car—I felt my own stomach churning in a bad way. Maybe this was why I found myself noting a few times, I think our friend can handle waiting at the train, the main thing is that Charlie is comfortable, kind of a lot going on……..

Our friend (very well bundled up) was waiting right outside the train station and we went straight to Charlie’s favorite hamburger place, and Charlie ended up with a double order of fries as we talked about old friends and acquaintances and where they are now. Jim dropped Charlie and me off at home and was heading out the door to drive the one friend who had had the long, cold wait at the train station when both friends realized they did not know where their coats were: The coats were in Charlie’s room and he looked very mournful when he said good bye and shook hands.

“We’ll see more friends soon. We will,” I tried to assure Charlie.

“Friends soon,” said Charlie.

It is a different kind of life we lead from most of our friends and family—an alternative normality—and the more who can walk on the path with us, and ride in the black car, the merrier.

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POSTED IN: Art, Charlisms, Family, Friendship