What gets Dr. Matthew Siegel (above) - a psychiatrist at Spring Harbor Hospital - out of bed every day and excited for his work with autistic children is his drive to unlock the mysteries of the disorder. But it's also what makes his job extremely challenging.
"We really don't have a good understanding of things as basic as, what is really different - what is really going on at the genetic level - between an individual who can speak, and an individual who cannot?" Siegel says. "And as basic as that sounds, we do not have a good understanding of that."
Siegel works in a special unit of Spring Harbor Hospital that is devoted exclusively to autism and developmental disabilities. Kids are admitted when they're dealing with severe emotional and behavioral problems, and they typically stay for 30 to 40 days.
"There are only 9 units like this in the whole country, that we know of," Siegel says, "and Maine happens to have one of them," - positioning Spring Harbor well, says Siegel, for research.
Though he and researchers at the Maine Medical Center Research Institute are spearheading the study, they're partnering with six of the other hospitals to gather data on severely autistic kids who are admitted for treatment: "Their emotional state, their intelligence, their communication ability, their mental health - so whether they have anxiety or depression, ecetera," Siegel says.
Researchers will also take blood samples to gather genetic data. Just as doctors and researchers hope this information will begin to explain the differences in the autism spectrum, educators are also eager to learn more about autistic children, says Jan Breton, the state director of special services in the Department of Education.
"Sometimes we have children in schools with very significant needs," Breton says, "and teachers and paraprofessionals who are needing more support, in terms of how to deal with the behaviors, the communication problems."
Breton says there are more than 2,600 school-aged children with autism in Maine. Dr. Matthew Siegel says there are no hard numbers on how many of those cases are severe, but he says generally, about a quarter of autistic kids don't develop functional language, and 30 to 45 percent have an intellectual disability. He hopes the two-year grant is just the beginning of what will become a long-term research project, benefiting anyone with autism.
"Our ultimate goal is to not only characterize them, but then understand the population well enough that we could actually begin to do treatment trials ourselves," reaching a point where that treatment - whether it's behavioral, pharmacological, or something else - is driven by the known biology of autism.
The research begins in February.
Photo: Patty Wight