Culture

Life Lessons from Parenting on the Autistic Spectrum

The human brain is a complex system. Over millions of years of evolution, we’ve developed a fairly narrow range of normal behavior despite all possible outcomes. There are many different ways for a brain to work outside of the paramaters of normal behavior. There are many less ways for it to work within the paramaters of normal behavior. The fact that the overwhelming majority of us are within specs is a credit to the vast, complex biological system that we humans are.

When things go wrong with the brain, sometimes there’s an acute, isolated issue that either can or can’t be fixed. When they are discovered the outcomes are somewhat predictable. When fixable, they are fixed. When not, arrangements for the consequences are made.

Sometimes, the problem is more obscure. Things aren’t clear. The root cause is in question or completely invisible. For the 1 in 68 children diagnosed with autism, this is very often, even usually, the case. Autism is, after all, not really an ailment. Its a description of symptoms that, once scaled to a level of disability, warrant a diagnosis.

The cause is immaterial to that diagnosis.

We now know things about the impact the environment has on child development. We understand the role that the immune system can play in dealing with things. Our guts feed our brains and therefore develop them over time. We see this in rare diseases where the inability to metabolize proteins leads to severe impairment and death.

But we don’t know what causes autism. And we don’t know how to cure it.

We do know that sometimes it’s cured. And we know the types of activities and environmental characteristics that correlate to higher instances of a cure. But nothing is certain. It’s within this insight that the great metaphor of life that is autism is found for me.

My 11 year old, diagnosed with Autism a month before his third birthday, takes a dozen dietary supplements a day.  He attends hours of therapy—neurostimulation, neuro-feedback, applied behavioral analysis, music therapy, chiropractic therapy, speech therapy—every week.

It costs a small fortune in time and money to do it. And he is not cured.

The lesson of life and autism is one of regret. Or better yet, a lack thereof. I don’t and likely never will know what impact what we do for my son has on his life. Even if he wakes up tomorrow cured, I’ll never know if it were simply natural development or all that we’ve done. I do know, that based on all the latest information, we’re doing the things that yield him the best opportunity to succeed within the bounds of the resources we have available.

The notion that it could all be for nothing, and that one day we may look back at it and wonder aloud to ourselves what else, besides try to help our son, could we have done with the resources we once had, is not one I spend much time on.

It has been my experience in a life surrounded by people who have accomplished great things in vague and ambiguous worlds, that those who make a difference in anything— society, government, science, industry, other—don’t either.

Categories: Culture

Tagged as: