Autism cases, one by one

The Baltimore Sun

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.

Paul Law, who speaks carefully and has an air of perpetual calm, had always been mindful of advice his father gave him: If you're going to return to the Congo, be sure to marry the right woman. He met Kiely while they were in college in Kentucky, and on their first date, he gave her the book his grandmother had written about the family's history in the Congo. She stayed up all night reading it.

Kiely Law, who has the warm, peppy constitution of a pediatrician, grew up in Tennessee and always wanted to return to that state as a doctor to work with its underserved population. But the Congo, she figured, was an underserved region too. She liked the idea of raising a family in a foreign setting.

Later, the couple married and moved to Baltimore to attend medical school at the Johns Hopkins University - where they both received medical and public health degrees - and had four children, including Isaac. Neither was thinking of autism research as a career at first; the disorder chose them, they say.

During his residency, Paul Law created a Web-based collection of data-gathering tools for an autism research organization while his studies in medical informatics, a field in which he has a second master's degree, focused on autism research. Eventually, his vision and that of Kennedy Krieger leaders - who have increasingly made autism central to their work and are pioneers in the field - dovetailed and IAN was born.

As parents of a child with autism, they have a distinctive connection to the project, Kiely Law said. Unlike the many parents who are just learning about autism, "we're old in this," she said. "We've been through it. It's the one area where I think I have some wisdom."

At the same time, other parents join the community and "re-inspire me to keep going," she said. There was a time when she didn't think a cure for autism was a possibility; now she does.

"It's not one disorder, so the cures won't be universally applicable," Paul Law said. "They will come in one at a time over the next years."

In discussing the subject of a cure, the Laws sometimes quote Isaac, who is 14 and attends public school. When he came home one recent afternoon, he joined the conversation. His parents' project, he said, "is pretty much helping people."

Then he pulled out some drawings, including a portrait of himself in a future era when, as he put it, man has evolved into a more advanced race. In the picture, he has a round metal head and robotic arms and fingers and does not have autism, he said.

"When they manage to cure autism, try not to cure too much of it," he said, "because autism might help create more amazing, imaginative minds like mine."

When Isaac disappeared into his bedroom, his father turned, again, to talking about Africa.

He still misses the Congo, he said; he misses eating crickets, days of fishing and hunting, and listening to the village storytellers around the fire. "If you know another language, another culture, it's a part of your soul," he said.

But in some ways, working with autistic people is similar to being part of another culture, he said, and it comes with awesome responsibility. "Of any single person, I'm responsible for speaking on behalf of 21,000 people, taking their stories and influencing government institutions and researchers," he said.

And one day, maybe 10 or 20 years from now, they may yet move to Africa. That's a dream they haven't quite abandoned.

"I keep telling him there's autism in the Congo," Kiely Law said. "I think somehow it will all get linked together."

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