News-Record of Maplewood, New Jersey

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Thursday April 17, 2008

WE NEED TO FACE AUTISM HEAD-ON

Therese Ojibway

Fourteen years ago, I began offering my personal perspective on autism for Autism Awareness Month each April. Back then, 1 in 10,000 children were affected by autism. Today, autism spectrum disorder affects on in 96 children in New Jersey. If these statistics carry forward through the next decade, no family in New Jersey-or across America-will be left untouched by autism.

Autism awareness has certainly grown; it seems to make headlines every week. Someone said to me, “Autism is the new “˜in’ thing. Everyone wants to say their child is autistic.”

Nothing could be further from the truth.

There is nothing glamorous about it. The reason that so many children are saying their children have autism is simply because they do! No one knows what causes autism or how to prevent it. So, the numbers continue to rise. Some good news is that early intervention for young children with autism is now more widely available and can lead to positive outcomes. However, the availability of services decreases the older kids get.

Autistic spectrum is a continuum of brain disorders that can cause difficulties in social interaction, communication and behavior and ranges from mild to severe. Those individuals on the “high” end of the spectrum have communication and social skills that are mildly affected and can usually have fairly normal lives, whereas many on the severe end never learn to speak or to care for themselves.

My son lies somewhere in the middle of the autistic spectrum; he can read and write and he can do some things teens his age typically do – roller blade, ride a bike and make his own snacks. But he also does some things other kids typically don’t do: gallop down the aisle during a church service or let out a startling whoop in a restaurant, for instance. He has some functional speech, but he cannot converse.

How does he feel? What does he dream about? What does he think? These questions haunt me. It’s not that he’s a sullen 17-year-old who doesn’t want to tell me things; he cannot express thoughts and feelings. He can say, “I love you.” He learned that by rote. But that much I know already. Our love for each other is an unspoken fact.

It is also a fact that he is growing up and I’m growing older. Hardly a day goes by that I don’t worry about what will happen when I’m no longer around. While research into the treatment of autism is crucial for our society, so, too, is providing lifelong supports. Service for disabled adults are few and far between and individuals with autism have a normal life expectancy. One in 96 children will become one in 96 adults. We need to become more aware of this stark reality and act now to create services that will allow them to participate in and contribute to our communities to the best of their abilities. We all benefit by being  a compassionate and inclusive society.

Therese Ojibway is a program coordinator for autistic children

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