Tuesday, January 02, 2007

A families struggle with Autism Spectrum Disorder

Jan 2, 2007

Mike Burke used to tell people he hadn't had a decent night's sleep in 10 years.
They thought he was kidding.
He didn't tell them about his failing health, his falling income or his wife's nervous breakdown. He didn't talk about being choked by his young son as he drove down the highway or cleaning up after the boy following yet another out-of-control outburst at 2 o'clock in the morning -- or simply trying to comfort a child who couldn't be comforted.
He didn't say much about the living hell his home had become as he and his wife, Pam, tried to raise a child with severe autism.
"It was horrible," said Burke, who works as an investment adviser. "We just tried to stick it out."
However, the sleepless nights and unending days finally wore them down. Eventually, the Burkes, who live in Henrico County, did what years before would have seemed unthinkable to them: They placed their only child, Ryan, in a youth group home shortly after his 16th birthday in 2003. It was a terrible heartbreak and a major relief.
"As much as we love him," said Pam Burke, "I couldn't do it anymore.
"It was like, Can't somebody just do something to help? We had to have a break. We wouldn't have made it; we were running on empty. It came down to survival."
The Burkes' bleak story provides a glimpse into the lives of families raising children with the most serious cases of autism and other mental disorders. It is a story that often goes untold because of a fierce sense of privacy or even embarrassment by those living it and a lack of awareness by others.
"People don't really want to think and talk about this stuff," said Mike Burke.
The Burkes' situation is an acute example, but they are far from alone. Dr. Carol Schall, director of the Virginia Autism Resource Center, said an estimated "10 to 20 percent of families with autism" have a child with extreme needs in the range of Ryan's.
"Those families really, really struggle," said Schall. "That's the minority, but it's a bigger minority than people think."
An increasing number of families could face circumstances similar to the Burkes' in the coming years as the prevalence of autism continues to grow. According to the Centers for Disease Control and Prevention, of the estimated 4 million children born in the United States every year, approximately 24,000 will eventually be diagnosed with an Autism Spectrum Disorder. The number of children diagnosed with autism continues to rise at a rate of 10 percent to 17 percent per year, according to the Autism Society of America.
Autism is a complex developmental disability that is the result of a neurological disorder. It affects the normal functioning of the brain in the areas of social interaction and communication skills, according to the Autism Society of America. As a "spectrum" disorder, it affects each individual differently and at varying degrees.
A major problem for families of children with autism is a shortage of support services and a disjointed system that makes it difficult for those seeking help to figure out what's available, said Bradford Hulcher, information and referral specialist for the Autism Society of America, Central Virginia chapter.
"Families lose jobs, split up, give their kids up," said Hulcher. "All kinds of horrible things happen because supports aren't in place for families."
Hulcher has a son with autism. Sam, 16, has made remarkable strides over the years and now attends school and participates in numerous social activities. Having Sam in her life, she said, has been "the greatest gift I have ever known." However, she works with families with children on the more severe end of the spectrum and fully understands how they "truly are just living day to day."
As for the Burkes, she said, "They obviously have tremendous devotion to their child and to each other to have survived what they have."
A Richmond-area woman who has walked in the Burkes' shoes knows all about devotion and survival. She also has a son with severe autism, and her family experienced similar episodes with him.
"He'd put his hand through the window when he was upset," said the woman, who asked that her name not be published. "There was a time he pulled me up a flight of stairs by my hair. There were times when my husband and I and our other child locked ourselves in our bedroom. We could hear him smashing things downstairs. We were scared of him, but at the same time we really loved him."
Her family wound up getting support and services, through state and federal funding, but even that wasn't enough. The family finally made the difficult decision to put the boy in a group home, where he's doing well. He comes home for occasional visits.
"When you're living it, you're under so much incredible stress that you look back on it and wonder, How in the world did we make it?" she said.
The Burkes know the feeling.
They knew early on that Ryan was different. He had trouble sleeping -- he would often cry and scream through the night -- and experienced frequent ear problems. He didn't socialize well with other kids and he was slow in developing his verbal skills. By the time he was 4, he'd been diagnosed with autism.
As he grew bigger and stronger, he became more violent and destructive. Eventually, the Burkes, to eliminate the temptation to break things, furnished their bare-walled home with little more than a couch, a table and a single lamp.
In public, Ryan would throw horrible fits and act inappropriately, so the Burkes stopped going out. At home, he would do the same, but at least he wasn't on public display. Ryan, who speaks little, couldn't communicate with his parents -- "It was heart-wrenching to know he was trapped inside that body," said his mother -- and they couldn't even hug him because he was overly sensitive to touch, a common characteristic of autism.
"It was like having your hands tied behind your back," said Pam Burke.
The Burkes saw numerous doctors, traveled to other states, tried experimental procedures, did seemingly everything they could. Nothing changed. Ryan was always a threat to wander off; he almost never slept more than a few hours at a time. His outbursts continued, and he required attention 24 hours a day. He attended special education classes, an after-school program and, on occasion, there was respite care, but otherwise the Burkes were on their own. They found it almost impossible to find anyone capable or willing to take Ryan for even an hour or two.
They felt very alone.
When people would suggest placing Ryan in a group home, the Burkes were defensive, viewing that option as "a scary thing to think about," said Pam Burke.
But it came to the point where the Burkes viewed placement as their only "salvation."
It's been more than three years since Ryan went to live in a group home a few miles from where his parents live. He seems to be doing well and enjoying living with other kids, his parents said. He seems more at peace.
Ryan comes home for weekly visits. He and his parents usually watch TV or just hang around the house. They eat pizza for dinner.
Why did the Burkes decide to make public a private, often painful period of their lives? They described the process as therapeutic. They also hope it might help other families going through the same thing and that it might enlighten those who've never experienced such heartache.
"If you know of a family, don't be shy about asking to help them out," said Pam Burke. "Pick up [the child]. Take them to the park for a couple of hours. Anything would help."
Ryan may live in the youth group home until he turns 22, when he will have to move to an adult home. Mike Burke still doesn't sleep well.
"It's been almost four years," he said, "but I still wake up in the night."
Contact staff writer Bill Lohmann at or (804) 649-6639.