Awareness by others eases autism's burden

Posted: April 01, 2004

Many parents feel that the most beautiful thing about their child is a wide imagination. Whether he or she is pretending to be a cowboy, firefighter or superhero, when parents watch their child at play they realize that the potential is unlimited.

Just imagine how you would feel if your child were suddenly shut off from that vast land of dreams and possibilities and simply retreated into his own world of solitary confinement. That's not imagination; that's the reality for parents of children with autism.

And a harsh reality it is. Autism is a devastating brain disability that typically appears before the child is 3 and affects his or her ability to communicate and function socially. This disease knows no social, economic or cultural boundaries.

Autism was not well understood until the 1990s. The U.S. Department of Education recorded a nationwide increase of nearly 120 percent in the number of students identified as autistic from the 1992-93 to the 1996-97 school years. The number of autistic children reported in New Jersey rose from 1,042 in 1994 to 3,984 in 2001, according to the New Jersey Department of Education.

The autistic child often shows no sign of the disorder at birth and appears to progress normally until some drastic changes begin. Then there is little resemblance remaining of the child the parents once knew.

Children with autism may process and respond to stimulation in different ways. They have difficulty in expressing their needs. They may gesture instead of speaking; they may repeat words or phrases instead of speaking normally and then act out tantrums because of their inability to communicate.

The child may also make no eye contact, become obsessed in an activity for hours, and hurt themselves. It is safe to say a diagnosis of autism completely changes the parents' lives, too.

My friends Judy and Russell Baji have a son, Ryan, who is autistic. Five years ago, at the age of 3 months, Ryan was found to have cancer. The Bajis survived a very difficult time and are happy to report that Ryan is an official cancer survivor.

But as Ryan grew, he developed a speech delay and behavioral problems. His parents took him to a neurologist, who diagnosed autism.

Ryan is a bright, happy boy whose world revolves around Thomas the Tank Engine. He enjoys playing Gameboy and computer games and frolicking outside.

Ryan uses the Picture Exchange Communication System to communicate with his family. The system was developed to teach children to exchange a picture for something they want. Ryan hands his parents a picture, and they try to teach him to pronounce his request.

Ryan and other autistic children need constant close supervision. He has no sense of the harm that could come to him as a result of his actions. His future is definitely unknown.

The parents of autistic children also face their own personal dilemmas. They need to remember that they are not bad parents, and that their children are not wild, uncontrollable brats, as some people assume. There are forces at work that are far beyond a parent's control. Some of the parents' friends may not be able to cope with the child's behavior, causing the family to become isolated.

These parents must put aside their broken dreams and deal with the situation. Love is never a question, and their parental bonds grow stronger than ever. But the autistic child needs a lot of outside help. The typical child with autism will require $4 million in lifetime supervision and care.

There is no known cause for autism, and research continues. The National Alliance for Autism Research is trying to find out why so many children are developing this disease, and it is searching for a cure.

April is Autism Awareness Month. We're well aware that parents of autistic children, such as Russ and Judy, are a special breed, but they still need your support. With your awareness of autism, and a lot of love and determination, there will still be hope for a brighter future for children like Ryan.

Let's give them back their imagination.

Bob Holt writes from Mantua.

Autism Fund-Raiser

The National Alliance for Autism Research is sponsoring Walk F.A.R. (Family and Friends for Autism Research) to raise money. The team of Ryan's Hope, among many others, will be at Cooper River Park in Pennsauken at 9 a.m. June 12. For more information about a

walk in your area or donations, visit www.autismwalk.org.

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