Autism cases, one by one

Couple assemble database to aid research for cure

March 16, 2008|By Rona Marech | Rona Marech,Sun reporter

Paul Law grew up in what is now the Democratic Republic of Congo and always dreamed of returning one day, following in the footsteps of two generations of lay missionaries before him who built bridges and hospitals and cared for the sick. He envisioned earning a medical degree and moving back to Africa with his wife, Kiely, who is also a doctor, to treat patients.

But when the Laws' eldest child, Isaac, got a diagnosis of autism on his third birthday, their well-laid plans began to shift. Now they are undertaking a different kind of quest: to add every family with an autistic child to a vast computer database they've created to help researchers find a cure.

Since the Interactive Autism Network was launched more than a year ago by the Kennedy Krieger Institute in Baltimore, 21,000 families have completed online questionnaires about themselves and autism, a developmental disorder that varies in its expression but significantly affects communication, social interactions and other behaviors. Scientists studying other diseases or disorders have created registries, but IAN is by far the largest database of its kind.

The Laws hope that the project accelerates research by linking willing participants with autism researchers and enabling scientists to use the data to find trends or explore hypotheses.

"My parents were always on a mission, so it would be really odd for me not to have a mission too," said Paul Law, 38. "I've got to have a mission, or I don't feel right."

The project has already borne fruit. Reports based on the ever-expanding data are routinely published online. For example, IAN researchers have found that the parents of autistic children have a high rate of depression - an area they are now exploring further. Researchers have also used the site to recruit participants for more than 60 studies about such topics as brain development in infants, stress in parents and the efficacy of various medications.

"I don't think I could have dreamed how successful they would be in such a brief period of time," said Helen Tager-Flusberg, a professor at the Boston University School of Medicine. "It's been enormously successful in terms of interesting families."

Finding families for autism studies can be challenging because even parents who are enthusiastic don't necessarily have the time or will to participate because of the stress in their lives, Tager-Flusberg said. She has been linked to about 25 families through IAN, and has cited IAN reports in a recently completed book chapter and article.

According to the Centers for Disease Control and Prevention, one in every 150 children born in this country has autism or a closely related disorder. Interest in studying autism has blossomed in the past five years or so, said Dr. Gary Goldstein, the president and chief executive of Kennedy Krieger, which specializes in children's developmental disabilities.

"We now know it's much more common than once thought, and there's enormous interest in finding the cause and treatments and learning more about the actual spectrum of problems these families face," he said.

The project has eight full-time staff members including Paul Law, the director, and Kiely Law, the research director. Her husband is the visionary, says Kiely Law, 36, and she steps in to get things done when he over-commits himself. Autism Speaks, an advocacy and research organization, has given the project $6.5 million for its first three years, funding that the Laws hope will be extended.

The Web site also serves as an online meeting place where parents and others can learn about the latest autism research and compare their responses to questions on such topics as treatment or school placement.

"When your child is diagnosed with autism - and I have two - you feel so helpless. There's no cure. No one knows for sure where it came from," said Jenny Maloni, 37, of Mount Airy. "You want to help your child but don't know which way to turn. This is a way of being part of the solution. ... It's just genius, really."

She often wonders what the affected children and families have in common. "If we can figure that out in the future, we can change lives," she said.

At the time of Isaac's diagnosis, public awareness of autism was low, and the pace of research was frustratingly slow, Paul Law said. He remembers one lecture on autism in medical school. Kiely Law read everything she could on the subject but found that little was known about the disorder. "Something needed to be done. I couldn't find the answers on my own," she said.

On a recent afternoon, the Laws sat at their dining room table in a Baltimore County subdivision near the city's Mount Washington neighborhood and talked about their history and work.

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