Living An Autistic Life

Because autistic kids "look normal" when they misbehave in public, the hapless parent gets a lot of tongue clucking instead of sympathy or support from observers. At writer's group Wednesday, Caroline told this joke-story-metaphor after another member had read her piece about getting the diagnosis her son was autistic. We all needed the laugh it provided.

"This is a true story. A woman with her autistic son was in a long queue in the post office in Thurso. It was a slow moving line and it had already been a long day and her kid had had it. He could not be comforted, cajoled, bribed, or distracted into compliance. Nor could he be ignored. Others in the line were disapproving in various degrees of restraint. One woman was particularly vocal in her dismay.

Finally, in desperation, the mother picks up her child, tucks him under her arm and shouts at the clucking woman: "My child is autistic!"

"What's art got to do with it? "the disapproving older woman replied."

After a good laugh and comments to the woman whose piece she had bravely read to all of us, I put autism out of mind. The next day, however, I happened to be visiting a new acquaintance whose son, she told me, is autistic.

The reason for my visit led me to see all of her home. It was tidy and sparsely decorated. It seemed as if anything that was hers was relegated to corners or closets. Her son requires open spaces, so she cannot close doors on any of the rooms. Because he is incontinent, the house is full of navy blue plastic wrapped packages of diapers. They are lined up like soldiers across the top of the shelves in the hall, in the back room, in the laundry room, in the pantry.

Her son needs a structure, a schedule, and order. Even before she told me about her son, I had noticed the wrenches lined up exactly in order in the middle of the living room floor. They were arranged from left to right in increasing sizes. There was a distinction also with the plastic and the metal ones as well as the different colors of the plastic ones. Even a casual glance told me they were a talisman, an anchor, an offering to the chaos that needs to be kept at bay. In their arrangement there was an artistry as well as a desperation. I remembered the joke from the night before: What's art got to do with it.

My friend explained simply without any hint of overt sadness, that she lived, of necesity, an autistic life. She has to have a structure. For two hours one evening a week she can go out, but whatever she does has to fit exactly into those 2 hours and not cause any disruption in the other patterns created by her son.

She grew edgy as ourconversation extended beyond the hour my friend and I had promised. "I go out when he is away during the day," she explained. I am meeting someone at 11:30 for lunch: a ham sandwich, always a ham sandwich."

We left with smiles and comments about the weather, but I could not help wondering if the ham sandwich was a ritual choice, a budgetary restriction, or her part of the artistry of an autistic life.