Wednesday, January 17, 2007

Breaking the Autism Taboo (2) - The Harris Family of North Texas

In a recent post I commented on the fact that those speaking truths about the difficulties faced by many autistic persons and the families and other caregivers who love and care for them are often set upon by internet posters who criticize, mock and ridicule them. But such pressure is not forcing parents of severely autistic children into silence. The Harris's of North Texas have told their story and that of their 16 year old son Colton. It is a haunting tale but one which many parents of severely autistic children are familiar with. Parents of children like Colton Harris do not give up on their children. They continue to love and care for them at great expense to their own health, finances and emotional well being.

I applaud the Harris's for speaking out and telling their story.

"FORT WORTH, Texas - As a little boy, Colton Harris punched his fist through living room walls and bedroom windows.

Sometimes he would twist his pale thin legs like a contortionist. Twice he bent his ankle until it broke.

Now 16, Colton is the size of a man, but with three times the testosterone. Instead of shoving his fist through a wall, he slams his body into it. Just after Thanksgiving, he knocked out the only windowpane in the family's north Fort Worth home that had not been replaced with Plexiglas.

Colton's parents worry as their autistic son grows older, stronger and more aggressive. In five years, Colton will no longer be eligible for special-education services.

The Combating Autism Act signed by President Bush last month authorized $920 million in federal funds over five years to pay for research, education, screening and intervention. Advocates praised leaders for acknowledging autism as a healthcare crisis. Others say there's too much focus on research when services require more immediate attention.

"We also have got to do something for the here and now," said Anna Hundley, executive director of the Autism Treatment Centers, which have offices in Dallas and San Antonio. "It's like cancer; you have to find out the cause, but you have to treat the disease, too."

"Most people's idea of autism comes from the movie `Rain Man,'" said Anne Dachel, a member of the National Autism Association.

But the disorder affects children in different ways. Some can grow up to be fully functioning adults. For example, some children with Asperger syndrome, sometimes dubbed "autism light," can graduate from college, hold jobs and live independently. Others will always be dependant on caregivers.


Nearly bankrupted by the cost of caring for their son, Colton's parents aren't sure what kind of future he faces.

"My greatest fear is that one day we're not going to be here for him," Harris said. "It haunts me day and night." Raising Colton has meant no family vacations, dinners out or even a moment of relaxation.

He is among the 40 percent of autistic children who are nonverbal. He cannot use the toilet by himself.

As a child, Colton typically became aggressive when he was in pain caused by a gastrointestinal disorder common among autistic children. The outbursts became more frequent and aggressive with adolescence.

"It would get so bad that he would dig his teeth into anything or just bang them into stuff," Harris said. "You're thinking, please, God, don't let him break his teeth."

Aggression, aimed at themselves and others, is not uncommon among people with autism, Karni said. But it's often because they become extremely anxious. As they age and get bigger, it becomes more of any issue, she said.

Colton was 14 before doctors diagnosed him with autism.

The family tries to keep the furniture clean and the floors swept, but Colton is tearing apart the house a piece at a time. His parents have learned to set their routines around Colton and to ignore the incoherent sounds coming from his bedroom.

"You try to do your best, but what can you do with a child that is just not there?" Harris said. "This is a 24-hour-a-day, in-your-face-with-no-breaks life."

Yet they refuse to give up.

"He's still your kid, and you love him," said Harris, who will not consider institutionalizing Colton. "My fear is that since he can't speak people will take advantage of him.