scrapbook

Out of Darkness

A Family's Desperate Effort to Save Their Boys From a Life of Isolation

April 22 — Marc and Sophia Augier were overjoyed when their dream of a big family quickly became a reality five years ago with the birth of son Marcel and little more than a year later, twin boys Christophe and Henri.

Their lives, in the suburbs of Cleveland, seemed to be a normal and happy blur, as they went about the business of raising three young boys.

So, Marc and Sophia didn't know what to think when, at age 2, Marcel suddenly started behaving strangely. The boy who seemed to be developing normally, who was starting to talk, suddenly stopped talking, stopped responding to his parents.

At times, he would shake his hands in front of his face. Awake in the middle of the night, he wouldn't sleep. Sophia says he was "humming, talking to himself, bouncing off the walls."

Soon Marcel stopped making eye contact. He stopped pointing. He even seemed oblivious to Christmas presents. On a trip to Seaworld, "He wasn't even overwhelmed," she said. "He just floated through the day."

Concerned, they took him to the pediatrician, and then to a neurologist, where Marcel underwent a battery of intensive tests. The result was devastating. Marcel was diagnosed with autism, a complex developmental brain disorder that can leave a child isolated, completely unable to connect to the outside world.

The Augiers were stunned and heartsick. Soon, it got even worse. The odds were astronomical, but the doctor said Christophe and Henri were autistic too. And Sophia was pregnant with her fourth child.

It would not be easy to take care of three disabled sons. The boys couldn't tell their parents when they were hungry, tired or scared. They would be frustrated by their inability to communicate, and threw tantrums constantly.

Their children threatened with lives of dependence and isolation, the Augiers didn't know what to do. But they didn't give up. They decided to start a desperate journey against incredible emotional, financial and personal odds to save their sons.

On the Cutting Edge

It turned out that the Augiers were living near one of world's leading hospitals, Ohio's Cleveland Clinic — which was starting an autism center for children.

But the center had no program for toddlers. So the Augiers cleaned out their basement, and with the center's help, hired and trained a team of 12 tutors to implement a round-the-clock intensive therapy called applied behavior analysis, or ABA.

ABA is a form of behavior modification: Children are given one simple command at a time. For Marcel, it began with "come sit."

The command is repeated to them hour after hour, day after day, until they do it. Then they are rewarded with praise, or a snack or a toy, until they can eventually do it on their own.

"It's a constant effort on our part to open their world. Every day, every hour, every minute," Sophia said.

The hope is to break though to autistic children, training them to learn and, in theory, rewiring their young brains, said Leslie Sinclair, who runs the Cleveland Clinic Center for Autism.

ABA is a widely accepted treatment for young children with autism, and is used at centers and schools around the country. But some say ABA is too rigid. It is never easy: a child can bite, slap and scratch. The therapists can seem unsympathetic.

But Sinclair says the program is effective. "It's really firm and neutral," she said. "We don't really allow our children not to respond. And there are certain things we don't want our children to engage in because it's not productive."

ABA, especially when introduced early, can show results, and is accepted among many researchers as the most effective treatment for autism. But ABA doesn't rescue every child.

About 30 percent show real progress, but the Augiers believe the odds are with them. After a year of home therapy, their boys were enrolled in the Cleveland Clinic's new toddler center.

‘Sheer Delight’

In June 2001, the Augiers' fourth child was born. To their relief, she did not show any signs of autism.

And more good news: After several months, the ABA gamble seemed to be paying off. The Augiers could see real progress for their sons — not just basic skills, but real connections.

Marcel — who could not speak — could now form full sentences. Christophe was learning to read. Henri, the most severely impaired, could finally make eye contact.

The developments were "sheer delight," Sophia said. "When you see them coming back to you, it fuels the fire to keep going." The Augiers still use ABA at home, and every moment with the boys is an opportunity to reinforce what they have learned.

But ABA is expensive. Tuition at the Cleveland Clinic's autism center is $56,000 per child, about $170,000 a year for all three Augier boys. Neither insurance nor the government paid for it.

Marc lost his job in the recession, so the Augiers have been forced to spend their life savings — $500,000 so far. They had borrowed from friends and family, but say they can't keep going back.

So, with Marcel nearing kindergarten age, the Augiers faced a new challenge: They would have to ask their local school district for help, or face the fear of losing this lifeline to their children.

A National Debate

By law, public schools have to provide a free and appropriate education for developmentally disabled kids, and the local public school does have a program for autistic children.

But it doesn't have to be the intensive year-round ABA that the Augiers receive for their children. The Augiers are currently negotiating with the district to try to come up with a suitable plan for their boys. They met with district officials this week, and are scheduled to meet again next month.

Attorney Sue Hastings, who represents the Augiers' school district in Chagrin Falls, Ohio, says she understands how parents who have seen their children flourish with a certain program might feel when they are not able to continue with it.

"But school districts are not charged with providing the 'best' that money can buy," she said. "They don't have the resources to fix the problem."

The Augiers have become part of a heated national debate. With autism dramatically on the rise — one in every 166 children is now diagnosed with autism — the issue of who pays for treatment and education is increasingly important. There are no national standards, and funding varies from state to state, district to district.

An autism diagnosis is already devastating for families, Sinclair said. "Now they have to go from one place to another trying to find where can I get the services and how can I get them funded. And time is ticking away."

Fingers Crossed

ABA experts say that when children start therapy young and get 40 hours a week without interruption, they have the greatest chance of living normal lives.

Even over a two-week Christmas break, Sophia said, she could see a regression in her boys.

There is a long waiting list for the Cleveland Clinic's autism center — and for places like it around the country — so for now, the Augiers feel lucky to be there. For now, they continue with ABA therapy at home and at school, and cherish each small victory. Their best hope for their boys: "full recovery," said Marc.

There was one piece of good news for the the Augiers recently: Marc got a job in finance.

Posted by thinkum at April 22, 2004 08:40 PM