This summer, due to an electrical service upgrade, my house was without power on an intermittent basis. Sometimes it was off for only 30 minutes; sometimes most of the day. Sometimes the power company would send a letter telling us to plan for no power on a certain day, and I would scramble to figure out alternate ways for me to work, blow dry my hair, and make coffee—the three most important items in my day, at least in terms of electrical use—and then the power would remain on. The following week the power would shut off without warning for ten or fifteen minutes. Just enough time to mess up my clocks and computer network. For someone who works at home, this was profoundly annoying.
For Katie, it was something more.
Kids on the spectrum have a profound need for structure and predictability. You would too if your world was as out of control as it is for the average autistic child. Sensory dysregulation means that something as commonplace as a ticking clock can send a child into a tailspin. When their bodies refuse to cooperate, autistic kids compensate by asserting control over their environment. This works to an extent, but as we all know, real life is rarely predictable.
In our house this summer, it was even less predictable than usual.
Katie did pretty well, all things considered. But the first few times she came home from summer school and we couldn’t make toast, she was upset. Not huge tantrum upset, but annoyed. She assumed I, as the mommy, could fix this problem, and when it became clear that I couldn’t, she grew concerned. But then the power would come back on and the problem would be forgotten—until the next time.
For years I have prided myself that despite her many challenges, Katie transitions well, particularly for a child on the spectrum. Give her a verbal warning five or ten minutes in advance and she is usually good to go. She has never been the kid who insists I drive the exact same way to school or the store. In fact, she thrives on variety and enjoys trying new things. I don’t think there is produce at the farmer’s market that Katie hasn’t tried.
But now along with the separation anxiety I discussed a few weeks ago (read it here), a subtle rigidity is creeping in. She may still refuse to eat leftovers, but my morning shower routine must remain the same, including playing the same CD. When we drive in the car, not only does she want the same CD, but the same favorite song played over and over. Admittedly I probably taught her to do this because there were a few songs I listened to over and over during my divorce, songs that seemed to say what I didn’t have the words to say during that chaotic and grief-filled time. And who knows? Maybe it’s the same for Katie. I don’t mind indulging her musical fixations, but her insistence that I must buy pizza every time we visit CostCo? Not so much.
My instincts tell me that this rigidity is tied to the anxiety, that Katie is asserting control over what she can to make up for the things that she can’t. But this is a slippery slope for an autistic child. Too much rigidity is problematic.
After several conversations with Katie’s in-home therapists, we have decided to try and “break” some of this rigidity before it becomes worse. Juan and I, who will bear the brunt of Katie’s behavior as we implement this plan, are less than thrilled. But we know it’s necessary to give Katie (and me) a more functional life. So we are stoically preparing. As we do, I’m reminded of a young soldier I saw interviewed on CNN in the first days of the Iraq War. He said, “I know the only way home is through Baghdad.” Those words have stuck with me, and right now, it’s true for us too. The only way is through Baghdad.
And once there, it might be a long trip home.
Until next time,
Cynthia Patton
