By Joe Lawlor
Portland Press Herald/TNS
January 8, 2019
WESTBROOK, Maine — Ethan Datsis examined what appeared to be a watch, turning it over a few times before agreeing to have a health professional attach it to his wrist. He seemed to forget about it while anticipating a spaghetti dinner, one of his favorite meals.
Ethan, 17, who has autism and is nonverbal and is staying temporarily at Spring Harbor Hospital in Westbrook, is part of a $3.1 million national study headed up by MaineHealth that will research how wearable technology could help children with autism and their families.
The three-year study that started last fall will track 200 children and their families in Maine, Rhode Island and Pennsylvania. The goal is to see whether the devices can predict aggressive episodes, alerting caretakers such as nurses, aides and parents. If the caretakers receive warnings, they can try to calm down or divert the attention of the children, avoiding assaults or self-injury.
Dr. Matthew Siegel — director of developmental disorders for Maine Behavioral Healthcare, which is part of MaineHealth, the parent company of Maine Medical Center — said the devices, which utilize technology similar to a Fitbit or an Apple watch but are more complex, have great potential.
A pilot study by Maine Behavioral Healthcare in 2017 with 20 children with autism showed that the devices could predict with 74 percent accuracy whether a child would have an aggressive episode within 60 seconds.
“We’re trying to use objective physiological signals,” Siegel said. “If it really works well, that will be exciting and will be another tool in the toolkit for parents and caregivers for the autistic. There’s so much more we need to learn to be able to predict with greater accuracy.”
The device tracks a person’s heart rate, blood pressure, motion and the electrodermal system, which detects perspiration. Combining those four measures, the device can learn to predict when an individual is becoming anxious and can alert caregivers with a simple signal. “Green” would signal that all is well, “yellow” a warning and “red” an indication that the child is likely to become aggressive.
For a nonverbal individual like Ethan, who lives in York and is on the severe end of the autism spectrum, the key is to slowly introduce the device until he can wear it most waking hours without wanting to take it off.
Ethan’s parents, Ellen and Kurt Datsis, said the device could be a “game changer” for their family. Just having a minute to use the techniques they’ve learned to calm Ethan down when he becomes anxious — such as diverting him to something he likes, encouraging him to take deep breaths or dimming the lights — would help prevent aggressive episodes from happening.
“Right now, it’s as quick as flipping a light switch. We don’t know when it’s coming,” Kurt Datsis said. Ethan can be genial and laid-back one moment and then attack his parents or try to hurt himself a few seconds later.
“He’s always had a difficult time identifying his own emotions, and I can’t identify his emotions for him. The anxiety will stay inside him and be building inside him, and we won’t know it,” Ellen Datsis said. “If we can learn what would make him go from green to yellow to red, that would be big.”
His parents said they believe Ethan’s anxiety is rooted in a surgery he needed at MassGeneral Hospital for Children in Boston to reverse a gastrointestinal disorder that made it difficult for him to eat. He often got nauseated and vomited before doctors performed the surgery in July 2017 to correct an annular pancreas, a condition in which the pancreas wraps around the upper part of the small intestine, causing blockages.
“It’s like he’s having PTSD, but because he’s nonverbal he can’t tell anyone about it,” his father said.
While the surgery was successful, any time Ethan has even slight abdominal pains or gets nauseated, he associates that feeling with the anxiety that something serious is wrong with him and that he would need surgery again, Kurt Datsis said. That anxiety has led to behavioral problems at home, and for their safety they had Ethan hospitalized last month.
Siegel said when children with autism become anxious it triggers the “fight or flight” response, which exists in all humans. People with autism have few coping mechanisms, so they lash out or injure themselves, Siegel said.
Siegel said the techniques caregivers learn now are essentially reactive, and while they can help, they often don’t lead to improved quality of life for the child or the family.
“What we do now is good but not good enough,” Siegel said. “If we go from 20 aggressions per week to 10 aggressions per week, that’s good, but it doesn’t really change the family dynamic much if I still can’t predict when those 10 aggressions are going to happen.”
The unpredictability of outbursts can prevent families from doing things that other families do, such as attending a game or a concert, or even day-to-day activities like going to the grocery store.
The research is funded by the Simons Foundation of New York and the Nancy Lurie Marks Family Foundation of Massachusetts, and will include research partners at Brown University and Northeastern University. It will follow children in three states so that different populations are studied.
Matthew Goodwin, associate professor of health sciences at Northeastern, said the idea has been around for a long time, but there was no way to implement it. Research from seven years ago that Goodwin was a part of at Massachusetts Institute of Technology led to the wearable technology that now makes it possible to detect complex physiological changes.
“Both Dr. Siegel and I independently came to the same conclusion 20 years ago, that these were not ‘bad kids,’ but that anxiety was triggering their fight or flight response and they had no way to cope with it,” Goodwin said. “It’s taken the technology 20 years to catch up.”
There are many issues to work on, he said, including limiting false positives. “We don’t want this device to cry wolf. We don’t want it to give false alerts to people.”
And he said they don’t know how well it could help children who are on the higher-functioning end of the spectrum, although it holds promise for them as well.
“How well will the algorithm work for people who have far fewer episodes, and much less frequently engage in these types of behaviors? We don’t know,” Goodwin said.
The research on autism is in such an early stage that effective therapies for it will likely not be available to families for many years, he said. But he said the wearable technology has the potential to be a practical help for families in the not-too-distant future, although it’s difficult to predict when it would be available even if the research succeeds in developing an effective device.
“My goal, more than anything,” Goodwin said, “is I want someday for people to be able say, ‘My life is better because of this thing.'”