Written By: Mark Osteen
When you’re the parent of a child with severe autism and read those autism recovery stories, you feel that if you were truly a good parent, you’d have “beaten” autism too. But what if you don’t beat it?
You can look for magical explanations. No matter how rational you think you are, when something like autism strikes your family, you cling to superstitions. So I’d sometimes think: I once mocked a mentally disabled boy who lived in my neighborhood. Am I being punished for my insensitivity?
You can point fingers. We did—mostly at ourselves. During one period, my wife, Leslie, convinced herself that a kitchen solvent she’d once used had caused my son Cameron’s autism. She obsessed over it for months, tormented herself, lost sleep—until we realized that Cam’s symptoms had appeared before she’d used the solvent.
Other times she attributed Cam’s disorder to an illness during pregnancy. Again she tortured herself: “Why did I make that trip when I was pregnant? I should have been more careful!” But we have no evidence it had anything to do with Cam’s disorder.
We’ve also wondered if some environmental toxin did it. During Les’s pregnancy we rented our house from a tobacco farmer. Was Cam’s development warped by some toxic pesticide our landlord carried on his clothes?
It’s tempting to blame nasty corporations and their poisons. But it’s likely that autism is at least partly genetic. Scientists have discovered abnormalities on several chromosomes that may cause the disorder, or that may interfere with the ability to metabolize certain chemicals and eventually lead to autism. It’s also probable that autism is not one disorder but many, each produced by a distinct combination of genetics and environment. If so, there’s nothing any parent could have done to prevent it. Yet that’s precisely why such explanations are unsatisfying.
Autism is so nebulous: no tumor invades your child’s body, no visible deformity mars his looks. Blaming yourself gives you an illusion of control: if only I had done more, my child wouldn’t be autistic. What a perverse sense of power guilt gives you! On the other hand, if you can’t blame somebody or something, you feel like a helpless puppet flung around willy-nilly by a malignant or indifferent cosmos. It’s much more satisfying to find a scapegoat, even if it’s yourself.
So we understand why parents wear themselves out on blame crusades, empty their bank accounts pursuing fad therapies, and drive themselves to emotional breakdowns: they’re trying to save their children, or at least to stave off their guilt for not saving them.
It’s only human to ask, “Why us?” I’ve done my share of cursing fate. But blame is a narcotic and, like all addictions, it erects a barrier between you and your loved ones. At first it makes you feel better, then it slowly devours you. Gradually we have come to grips with the most difficult recognition of all: nobody is to blame.
What else can you do? You can accept your child as he or she is. I used to entertain fantasies of an alternate world where Cam was a typical boy. I now realize that such fantasies prevented me from truly seeing and hearing him. What disturbed me most, I finally realized, was my unconscious belief that if Cam was disabled, then I was disabled too. To truly accept your child, you have to accept your own disability—your own inability to change him/her into someone else. Acceptance doesn’t mean you stop helping the person communicate, acquire social skills, and become less rigid. But it is liberating: no longer focused on causes or cures, you are free to celebrate the small victories—a new word learned, a successful trip to Burger King—
that can make life with autism radiant and rewarding.
Acceptance also frees you from the scourge of guilt; it breaks your blame addiction; it tears down that barrier between you and your child. Most important, acceptance lets you love your child again.