Parents are treasure troves of observational information, whether they’re watching how the behavior of their kids changes based on what they eat or how much they sleep. For parents of children with autism, this type of information can be invaluable to clinicians and researchers alike. But, according to assistant professor Matthew Goodwin, there is a difference between knowing that your child’s behavior changes when he eats certain foods, for instance, and knowing how often this occurs or how intense the behavioral changes can be. Goodwin said that information would be an important factor in determining whether those foods really are correlated to his behavior and, if so, what to do about it.
For that sort of information, said Goodwin, a parent’s watchful eye is simply not enough. To answer those questions, he needs quantitative data.
A leader in the emerging field of personal health informatics, Goodwin recently received a $1 million grant from the Simons Foundation Autism Research Initiative to turn parents into para-professionals, allowing them to collect research-grade data via easy-to-use, non-disruptive computer systems in the home.
Over the course of two years, Goodwin and his colleagues at the Georgia Institute of Technology will work with families in the Simons Foundations’ Variation in Individuals Project, or VIP. The project aims to connect genetic mutations likely associated with autism and other neurodevelopmental disorders with clinical and behavioral patient profiles.
With input from the VIP families, the researchers hope to first identify the most important types of behaviors to collect, then determine the best sensing systems to use. They will then deploy the system—first in the researchers’ own homes with their own families, and then with 10 families with children with autism in Boston, Atlanta, and Providence, R.I. After that, they will repeat the process with 10 families in New York, Florida, and Los Angeles, gradually increasing the distance between families and researchers, and thus the amount of support the researchers will be able to provide.
The second year will be devoted to data analysis, Goodwin said. Through the use of cameras, audio recorders, and physiological sensors worn and operated by parents, the system will track a number of conditions, he said, including sleep, seizures, anxiety, sociability, language use, motor-muscle tone, and body temperature. In addition, the researchers will be looking at general affect and deviations from a child’s typical behavior.
The researchers have previously demonstrated that they can track these states through the use of digital devices, but, said Goodwin, “This is the first time we’re going to do this with a total lay person.”
While the data collected will provide important information for researchers attempting to connect behaviors to genetic, physiological, and environmental factors, it will also provide a valuable tool for families themselves. Clinicians can use the data to monitor the efficacy of various treatments and changes in an individual’s condition over time.
Early diagnosis and treatment have been linked to improved patient outcomes, Goodwin said. But often, because of the complexity of the diagnostic protocol, cases go unnoticed or underappreciated for years. By providing a low-impact, easy-to-use system directly to parents and caregivers, he hopes to one day change that.