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Husband, father, grandfather, friend...a few of the roles acquired in 62 years of living.  I keep an upbeat attitude, loving humor and the singular freedom of a perfect laugh.  I don't let curmudgeons ruin my day; that only gives them power over me.  Having experienced death once, I no longer fear it, although I am still frightened by the process of dying.  I love to write because it allows me the freedom to vent those complex feelings that bounce restlessly off the walls of my mind; and express the beauty that can only be found within the human heart.

Wednesday, October 20, 2010

Autism and the Verdict of the Public Jury*

*Johnstown, PA Tribune-Democrat
October 24, 2010
as "No Fault in Autism"

Copyright © 2010 by Ralph Couey

I’m sure you’ve seen one. Maybe at the Galleria, a restaurant, or some other public place. A small child who yells, screams, or maybe collapses into a full-blown melt-down.

Do you remember your thoughts? Frustration, annoyance, judgmentalism. Perhaps you became angry enough to say something warm and supportive, like, “Can’t you control your kid?”

Chances are what you witnessed was not bad parenting or a lack of discipline, but one of a growing number of children afflicted with Autism Spectrum Disorder.

In the last 20 years, occurrence rates for Autism have increased rapidly. The latest round of statistics from the Centers for Disease Control shows that Autism is now the third most common developmental disability. It happens in 1 out of 110 births, more often than MS, Cystic Fibrosis, and childhood cancer, and seems to be increasing by as much as 17% per year.

The Autism Society of America defines Autism as “A neurological disorder that affects the functioning of the brain, impacting development in the areas of social interaction and communication.” Its cause is still a mystery, but growing evidence points to genetic disorders, particularly chromosome abnormalities such as deletion, duplication, and inversion. For a while, there was thought to be a connection to childhood vaccinations, mainly because that was about the age when the symptoms began to appear. However, recent scientific studies have completely discredited the connection.

The three hallmarks of Autism area:

1. Reduced interest in interacting with other people, reduced use of eye contact, and difficulty in understanding the intent of other people.
2. Deficits in verbal and non-verbal communication skills.
3. Repetitive behaviors and obsessive interests.

Other behaviors can be a child who prefers solitary behaviors, seeming to exist in their own little world, or a child who focuses on small details. An Autistic child doesn’t handle change very well, especially to their normal routine. They sometimes will engage in repetitive behaviors, such as rocking or waving hands. They may stack things, or line them up in a row.

There are varying degrees of Autism, from high-functioning to full mental disability.

Like most people, this was all academic to me. But it became very personal when our two grandsons were diagnosed.

It’s always sad when a relative or someone you know is diagnosed with a serious illness. But to see a child so struck ignites our sense of justice. A child, the very definition of innocence, should have a future that includes a long, normal life, not one where they are burdened with a struggle they never asked for.

Its been a tough road for our daughter Nikki and her husband, Danny, made harder by the death of their 5-month-old daughter in April from a serious genetic disorder. Nikki says, though, that raising her two boys is not nearly as hard as having to endure the uninformed and judgmental cruelty of strangers.

Mostly, it’s the looks; the tightened jaws, shaken heads and rolled eyes. But occasionally, someone bold – or incredibly insensitive – will say something, usually cruel. Nikki, to her credit, is very disciplined with her temper, and she’s given up lecturing about Autism to such cretins. Her husband, however, a veteran special ops trooper with the eyes to match, is less reluctant to respond.

Nikki says, “People with so-called normal children will never understand, because they don’t want to understand. I think they’re afraid that this same thing could happen to their kids, and they can’t stand the thought that they may not be perfect.”

The ugliness is so unnecessary. Autism is neither new nor obscure. Anyone with five minutes, web access, and a shred of decency can learn enough to recognize the signs, and perhaps offer sympathy and support rather than prejudice and accusation.

Being human means recognizing the humanity of others in all forms. In this rampant blame-someone-else culture, we must understand that there is no fault in Autism.

Especially the children.
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