People with autism connect with the world through repetitive behaviors. I mean, we all do, right? None of us want to live in a town where red light means stop on Tuesday and go on Wednesday. I think.
But people with autism take repetition to the nth degree. One of the the behaviors that led to our son Joey’s diagnosis was a daily pattern of running around the house, clockwise, pausing to touch certain objects in sequence along the way. That’s a game a neurotypical kid might create, of course, but then a typical kid would lose interest and create a different game without having to be coaxed out of it by a therapeutic intervention.
One of Joey’s current repetitive behaviors is turning off our house’s outside lights. It’s almost like he’s adopted a daily chore, which would be nice, except we can’t figure out the timing. It’s irregular and sometimes inconvenient. Why he’s even aware of those lights is a mystery, since they don’t glow into the window or anything. But he’s taken to turning them off, sometimes while waiting for his morning bus, sometimes when he gets up to get a drink at night, sometimes in a cantankerous little gesture just after we’ve turned them on.
Joey’s repetitive behaviors create repetitive behaviors in his caregivers. Now my wife and I have to check the light switch every time we go by at night.
Today is Saturday, and the whole family engages in a big repetitive behavior based on Joey’s imposed pattern of glazed doughnut with chocolate milk. It means I have to get up earlier than I want, including on bitter winter days; the dog expects a car ride to the market; Melissa has to go on seizure watch while I’m out, during which the cat nags her for a brushing. This pattern, almost down to a minute by minute precision, has been in place for years. All because Joey is happy with his doughnut and “off” – possibly to the point of a seizure – for the rest of the day if it doesn’t show up.
When I got back from the market, I knew that Joey was awake. How? Not because there was a light on in his bedroom window, but because the lights in the driveway were off.
These repetitive behaviors can infest the care giving family in a couple of ways. Obviously, they can become a grind. Or, they can become cute and sentimental, preserving the feeling of caring for a child long past childhood. This can create a void when the person with autism moves out, as Joey might at any time.
Then you have husband, wife, cat and dog all staring at one another wondering what to do. Care giving can create some patterns of relationship, but it can also make those a facade ready to collapse when the person receiving care leaves the pattern.
Care giving is a consuming, sacrificial act of love. But we have to be careful not to dramatize it or sentimentalize it, because it can take over too much of reality like some kind of idol.
One of the ways I resist that is to have my own @^%*#@$ repetitive patterns that aren’t tied to care giving. I read during my lunch hour at work, for example. This week, I got something worth sharing. Hope it helps where you are:
We fill in the center with something or someone and ask it to be the fulfillment of all our desires. We attempt to quench our thirst for the infinite with something finite. When this happens, we terribly distort whatever it is we are asking to be our god. No one, and nothing, can bear that responsibility and so we begin to squeeze the life out of our loves. And we die, too, because we need the nourishment only God can give. A lesser god means a lesser self. (John Welch, O. Carm., The Carmelite Way)