Life On the Event Horizon of Autism

Many years I wrote about my son's diagnosis. Twelve years later it was only in the past few months that I realized my behaviors began to mimic my son’s.

Life on the event horizon of autism

“The biggest danger, that of losing oneself, can pass off in the world as quietly as if it were nothing; every other loss, an arm, a leg, five dollars a week, a wife, etc., is bound to be noticed.”
―Søren Kierkegaard

A diagnosis of autism affects each of us deeply. My own reaction was not apparent, at least to me, for more than a year after the diagnosis.

The diagnosis was not completely unexpected. Something was wrong. The crying and screaming, the meltdowns, the need for sameness in food and routine, the lack of language, could not easily be explained or ignored.

I attempted to deflect the words delivered in a small cubicle on UCLA’s campus. A need to debate, to negotiate with this woman suddenly seemed pointless. Better to leave quickly without breaking into a run.

Like every other parent I was told autism is forever. There are no treatments. Perhaps there will be some improvements, perhaps not. Every Christmas and every birthday might be the same, a child more interested in the wrappings than the gifts.

There were no consultations with earnest teams of specialists to review the best course of action. No mapping of treatments and doctors to see. No four-color, 16-page brochures with smiling doctors and smiling children on the cover inviting you to a leading center where children with autism received the finest in medical care.

If anything the entire autism operation seemed to exist as a cottage industry to the high-tech, gleaming, super-structure of modern medicine. The “uncle” one does not talk about at family functions or in mixed company. There was tawdriness about it and a shame connected to the mention of the word.

Before the “official” diagnosis two young women from one of California’s Regional Centers came and tested my son. Of course they could not share what they thought they announced, their eyes darting around the room. The Word needed to be handed down from nigh on high above. Like a pronouncement from a judge delivering your life sentence. Their task was more as introductory gatekeepers to a Byzantine world of so-called experts and autism-speak, a language existing apart from reality unbothered with trivialities like cause and effect, the mantra “complex neurological disorder” serving as the only ballast on a rudderless ship.

Over the coming months I knew something inside me was changing. I did not know what. It didn’t matter. If my son wanted to play on the computer in the middle of the night or spend hours on the swing, that mattered. Anything that did not deal with the here-now-immediate of helping my son through the moment did not.

A study conducted on the effects of a tornado on residents of Udall, Kansas quotes a woman as saying “My husband and I just got up, jumped out the window and ran. I didn’t know where we were going, but I didn’t care. Any place was better than here. I can tell you this, we’re moving before the next one.”

When a disaster strikes people run to safety. Mobility is survival.

If we want to escape a coming disaster or change the present we plan for the future. Planning is survival.

Alvin Toffler says there are two dimensions of “futureness”– how much and how far. Adaptive individuals seem to be able to project themselves forward just the “right” distance in time, to examine and evaluate alternative courses of action before the need for a final decision, and to make tentative decisions beforehand.

For me, Toffler’s futureness extended to preventing or minimizing the next imminent crisis. The only time was now, making it through the moment without letting any harm come to my boy. Evaluating alternative courses of action extended to weighing the options of turning left at the light instead of right to avoid a traffic jam and potentially incite a meltdown.

Living on the event horizon of autism is where the finite becomes infinite, moments last forever; change is not constant-- sameness is. There is no escape. There is no place to run. There is no possible plan.

Looking for answers brought the same negative results. Listening to “experts” had a cumulative and corrosive effect. I could no longer think in complete thoughts.

Sociologist Benjamin Singer of the University of Western Ontario, whose field is social psychiatry, states, “The future plays an enormous, largely unappreciated part in present behavior.” He asserts each individual carries in themselves not only a picture of the present, but pictures as they wish the future to be. Pictures of the future provide a focus; it is a magnet toward which the individual is drawn; the framework for the present, one might say, is created by the future.

The present is future dependent. Not mine. Afraid to think, hope, dream, or imagine a better tomorrow the immediate became indeterminate. The now was too painful, a present-future did not exist; thoughts ran back on themselves, circular and empty.

A year and more after the diagnosis the steps of handling loss; denial, bargaining, anger, despair, and acceptance was almost complete. Searching the special education section at a local Barnes & Noble, more out of habit than hope, tucked between dead-end tomes dealing with surviving and managing autism, I stumbled on Let Me Hear Your Voice: A Family’s Triumph over Autism and infinity embraced my son.

Autism as absolute finds parallels in mathematics. Less dogmatic, mathematical proofs recognize a single counterexample graciously opens the door for an infinite number of exceptions. Isolated points become part of a universe of possibilities. Infinity is inclusive.

In that moment of redemption gone is the tyranny of absolutism and infinite possibilities open. When one of our children gets better all of our children benefit. We can plan, imagine, run, and help our children. The infinite is ours.