A gift of knowledge

Tuesday, July 29, 2003

By Anita Srikameswaran, Post-Gazette Staff Writer
 

During his too-short life, Laura and Daniel Walsh helped their son, Jason, live with autism.

Laura and Daniel Walsh with a photograph of their late son, Jason. (John Heller, Post-Gazette)

With the boy's death in May, a month before his 6th birthday, the Mt. Lebanon couple hopes to help researchers learn more about the causes and treatment of autism.

The Walshes donated Jason's brain to the Autism Tissue Program in Princeton, N.J., which makes study samples available to scientists trying to unravel the mysteries of this neurodevelopmental disorder.

The program is an effort of the Autism Society of America Foundation, the National Alliance for Autism Research and the Medical Investigation of Neurodevelopmental Disorders, or M.I.N.D., Institute of the University of California at Davis.

Director Jane Pickett talked about the tissue project at the society's national conference, held earlier this month in Pittsburgh.

Laura Walsh told the audience about Jason and urged families to consider participating.

Up until he was 1 1/2, Jason seemed like most kids his age. He spoke about 10 words, his mother said, including "Dad," "door," "down" and "Barney." He hadn't yet mastered "Mom." He made his family laugh at his antics at the dinner table.

But then everything changed. He rapidly lost words and interest in interacting.

"He had a clear-cut regression," Walsh said. "It seemed like it was overnight."

As a youngster, she had told her mother that she wanted to teach autistic children, and she had written a paper on autism in college.

"It was just a fluke that I ended up having Jason," said Walsh, an at-home mom. "But I knew what [the problem] was."

She told her pediatrician, who referred Jason to specialists at Children's Hospital for an assessment. Because the boy was so young, making the diagnosis wasn't easy. Without one, though, he could not receive intensive early intervention services.

"I don't care what the diagnosis is, just get him help," Walsh pleaded.

Diagnosis and therapy

Doctors ruled that Jason had a non-specific pervasive developmental disorder, which is one of a spectrum of autism conditions. Soon afterward, he was getting behavioral therapy and other services at home. Walsh said that his aides predicted that he would do well because he was coordinated and young enough that he might regain speech.

"We went on for three-and-a-half years until they finally said it really wasn't working," Walsh said. "He would learn skills and forget them like almost overnight."

She also looked into the possibility that Jason had a rare seizure disorder, for which a Chicago specialist recommended trying oral steroid therapy. The boy had been taking the pills, which suppress the immune system, for less than two months when he became very ill.

Emergency room doctors said it was the flu or croup, and that he'd be fine. That March night, Walsh tried to ease Jason's breathing problems by holding his head out of the window and sitting in a steamy bathroom. By morning, she was so worried that she took him to his pediatrician more than an hour before his scheduled appointment, hoping for reassurance. Instead, the boy was rushed back to Children's and admitted into the intensive care unit.

	How it works Read about how the Autism Tissue Program works.

Jason had developed acute respiratory distress syndrome. For the next two months, he needed a machine to breathe. Despite numerous tests and treatments, he didn't improve.

"After a while, it was like we were torturing him," Walsh said. "An autistic child doesn't want to be poked and prodded. The last thing Jason wanted to do was be with a bunch of strangers."

Hearing that he was unlikely to recover, the family stopped taking extraordinary measures to keep him alive. Walsh had wanted to donate her son's organs for transplantation, but other medical issues prevented that. And then another thought popped into her head.

"What can we do for autism?" she wondered. "I had worked so hard to help my son and I know there's a million parents out there doing the same thing."

A doctor searched the Web site of the National Alliance for Autism Research and learned about the tissue program. When Jason died on May 9, the Walshes donated his brain.

Mortality patterns

It was families like the Walshes that got the tissue program going, Pickett said.

Autism is estimated to affect up to 1.5 million Americans, and is four times more common in boys than girls. When the tissue program began in 1998, no one thought that mortality rates were any different among autistic children than in the general population.

"The idea was it would be a fairly passive program," said Pickett, who thought it would be years before much information could be collected and analyzed.

A couple of years after the program began, three autistic children younger than 10 died during the same summer, catching her attention. The cause of death couldn't be determined in some cases. About half of the 57 brains the project has banked so far came from people younger than 16.

In addition, Pickett's 15-year study of 13,000 autistic children in California revealed that there were more deaths than expected among 5- to 10-year-olds, particularly girls. "We don't know what that means, either," she said.

Drowning is probably the most common cause, Pickett added. Children with autism are often fascinated by water.

"The thing I've heard from parents is that their child is a little Houdini who gets out and around and through every latch and lock and into areas that are dangerous," Pickett said. Medication problems and seizure disorders are other possibilities, and the project's scientific advisory board include experts in those areas.

Dr. Nancy Minshew, director of the Center for Autism Research at the University of Pittsburgh School of Medicine, recently joined the board. Her center soon will provide links to the tissue project on its Web site and make more information available.

"Being able to look directly at the brain is one of the most precious scientific tools that we have," she said. Families need to know that brain donation is an opportunity to make "a golden gift to autism," as she put it.

The Walshes believe that without brain tissue to study, scientists might not figure out autism's causes. Without causes, how can they figure out treatments?

"I believe giving Jason's brain will put us one step closer to solving the mystery," Laura Walsh said.

"I believe Jason was sent here for a reason. Perhaps this program was one of the reasons."

(Anita Srikameswaran can be reached at anitas@post-gazette.com or 412-263-3858.)