My Son, Ben

My Son, Ben

William C. Kashatus
Philadelphia Inquirer
April 15, 2011

Ben is a mischievous 10-year-old with a contagious smile. When he’s happy, he spontaneously skips around the house. He can also be disarmingly affectionate, offering a big hug after stirring up trouble with his older brothers.

But Ben can be difficult to understand, speaking only in sentence fragments. He’s shy outside the family. And his frustration with crowded places can lead to a “meltdown.”

In case you haven’t already guessed, Ben is among as many as 1.5 million Americans with autism-spectrum disorders, a population that has risen in recent years to one in every 110 births. Ben is also my youngest son, and, like other parents of autistic children, I worry about the lack of awareness of the disorder among the public and policymakers. April, which is National Autism Awareness Month, gives others a chance to learn more about it and those who struggle with it.

Autism is a complex developmental disability with no known cause. It usually appears during the first three years of life, often as a limited ability to communicate and interact with others, although it affects different individuals differently.

My son was diagnosed with autism when he was 3. Because of his eccentric behavior, he is shunned by other children and even many adults. Some simply don’t know how to relate to Ben, so they don’t try. Others make an effort out of sympathy. Still others admit to a “there but for the grace of God” perspective.

None of these people understands that Ben’s autism doesn’t define him; it’s only part of him. His interests include model trains, computer games, rock-and-roll, and the Phillies. And like other autistic children, he doesn’t want sympathy or alienation. He simply wants to be treated like any other 10-year-old kid.

I used to believe Ben’s condition was punishment for some injustice I committed earlier in life. I envied other fathers who had “normal” sons who could play competitive sports. And I wished Ben was like other children and had friends his own age. But as my son has grown older, I’ve come to believe he is a gift. His feelings are expressed more passionately than other children’s. He is free of pretense. And he loves his family unconditionally.

At the same time, I realize there will be great financial demands on the family as Ben makes the transition into adulthood. According to the Autism Society of America, the lifetime cost of caring for a person with autism ranges from $3.5 million to $5 million, including health insurance, uncovered medical expenses, educational and therapeutic services, and caregiver costs.

Gov. Corbett’s recent budget proposal slashes funding for autism services from $35 million to $29 million, which will have severe repercussions for families that rely on the state to offset the enormous costs of the medical and educational services they need.

I believe Ben and other autistic children came into this world to teach the rest of us about the truly important things in life – hope, patience, and love. Let’s honor their examples by doing a bit more to understand and help them.