PORTLAND — What if everyone knew what was coming?
That is the question staff and researchers at Westbrook’s Spring Harbor Hospital, the Maine Medical Center Research Institute and Maine Behavioral Healthcare hope to answer about caring for people with severe autism.
The Simons Foundation of New York, and the Nancy Lurie Marks Family Foundation of Wellesley, Massachusetts, provided a $3.1 million grant to fund the research.
“If it works out, this could be a big step for the field because it is a truly different way of coming at what is a big problem,” Dr. Matthew Siegel of MMCRI said recently.
Siegel, who is also a MBH vice president, is directing a three-year study on whether biosensors can alert of impending “challenging behaviors” in children and adolescents with autism.
Falmouth resident Wendi O’Donovan appreciates the effort.
“I’ve seen people where you did not know it was coming, and these are big, serious behaviors; people can get hurt,” she said.
O’Donovan’s son Ryan, 22, was diagnosed with autism at age 2. As a child, he skied, went swimming, rode bicycles and went on family vacations.
“His world was pretty big until his freshman year in high school and then he could not keep it together as much,” she said. “Now his world is pretty small.”
O’Donovan said she and her husband, Tim, are impressed by Siegel’s dedication to Ryan and other patients.
“We are very grateful we met him,” she said.
Siegel said the study will involve 30 Spring Harbor patients annually on a volunteer basis for three years. As a teenager, Ryan O’Donovan was hospitalized there four times.
The biosensors resemble wristwatches, and would detect changes in physiology signals, including heartbeat, increased sweating or electrodermal activity, which Siegel described as “the little bit of electric current running across your skin.”
Siegel said researchers will work with patients at Spring Harbor, which already has a dedicated unit to care for children with autism and developmental disorders. Over five- or six-day periods the researchers will work to develop algorithms to determine what patterns may exist.
“The idea here is, can we reduce the unpredictability and get ahead of some of these challenging behaviors?” Siegel asked.
The local study is being made in conjunction with studies at children’s hospitals across the country, MBH spokesperson Lindsey Goudreau said. Northeastern University in Boston will help develop algorithms from the studies.
The prototypes tested cost about $1,200 each, but Siegel said the studies will also evaluate devices that would cost about $200.
“It is clear there is a large genetic contribution,” Siegel said of autism, “but beyond that are a lot of questions and no answers about whether there is something in the environment that contributes to it.”
Occurring along a spectrum of severity, it is estimated one in 100 people have autism, although Siegel said it may be closer to one in every 54 in Maine.
O’Donovan said her son is verbal, but that does not always translate into clear language. Some triggers, like sitting in traffic, are predictable.
“A lot of the triggers are things you and I worry about,” she said. “I like to say they don’t have a wick to their candle of patience.”
If the sensors can accurately transmit warnings to digital devices or other media, corrective measures as simple as having the autistic person take calming breaths can be made.
“We can give families back some of their freedom,” Siegel said.
O’Donovan said an alert would allow them to be proactive, using deep breathing, calming words or other small measures to avert frightening and potentially dangerous situations.
“If I knew what was coming, I could have a better toolkit of things to go to,” O’Donovan said. “I could create more teachable moments.”
Dr. Matthew Siegel shows the biosensor researchers are using to study possible warnings of impending “challenging behaviors” in children with severe autism.
Dr. Matthew Siegel: If studies show an experimental biosensor can accurately predict and warn of “challenging behaviors” for people with autism, it will give them and their families more freedom.