Isaac had trouble maintaining eye contact, rarely responded to his name and had an extremely limited vocabulary for a 3-year-old.
Baltimore researcher Dr. Paul Law and his wife knew their son was not like other children his age.
Sunday marked the first anniversary of his online autism database, the Interactive Autism Network (IAN).
Law developed the networking site at Baltimore City?s Kennedy Krieger Institute to help connect parents and researchers looking for answers.
People affected by autism “are very aware that the answers aren?t out there. They understand the value of research more than families with other disorders that are better understood might,” said Law, Krieger?s director of Medical Informatics.
IAN connects 21,000 family members and has assisted in 60 research projects focusing on autism spectrum disorders.
One of those parents is Ruth Huffman, the mother of two autistic boys who follows autism research closely.
“I like the Web site, because it?s all-encompassing,” Huffman said.
“It?s got information if you?ve got a child that?s newly diagnosed, as well as a lot of different topics, like problem behaviors.
“Sometimes, I feel like I?m the only parent that has a child that bangs their head on the floor.”
She said the connection to researchers and the broad community base gives the sense that parents can influence research or suggest topics for investigation.
“I really feel like they are including the parents perspective,” she said.
“We?re with them 24/7.”
The Centers for Disease Control and Prevention has noted a rising incidence of autism: One in 150 children will develop some degree of autistic behavior.
Symptoms include difficulty communicating and interacting with others as well as repetitive, obsessive behaviors and rigid adherence to routines.
Law expects the IAN network to continue to grow and begin offering connections between families and their doctors to help manage treatment.
“Within 18 days of launch, we became the largest collection of individuals and information that was available to researchers,” Law said.
To protect patient privacy, information from trials is not disseminated on IAN.
Researchers submit details of the population they are looking for, and Law?s team sends a mass e-mail to families that fit the description, giving them an opportunity to contact the researchers.
“We never reveal any information to researchers,” Law said.
“We serve as a middle man.”
