Ed-Dee G. Williams. Courtesy photo.
Ed-Dee G. Williams says that Black youth with autism often struggle to talk about depression and other mental health issues.
So, last year, he created an application to help them discuss their symptoms with teachers and caregivers.
Now he’s received a two-year, $160,000 grant from the Deborah Munroe Noonan Memorial Research Fund to evaluate the feasibility of the training program.
“The goal is for the app to support positive mental health conversations for Black autistic youth,” says Williams, an assistant professor at the Boston College School of Social Work whose research examines the interplay between race and mental illness. “When they get done using it, I want them to feel more comfortable talking about depression, have a better understanding of depression, and be more inclined to talk about their symptoms.”
Williams is one of a small handful of people this year to receive a grant from the Noonan Fund, which supports research in Greater Boston to improve the quality of life for children with disabilities.
His intervention, created in collaboration with a software company called SIMmersion, uses video and speech recognition to make it seem as though users are having live conversations with teachers who are responding to their statements in real-time. In actuality, users are talking to simulations of teachers, played by actors, who have been given scripts to provide a variety of typical but unpredictable reactions to what they say.
At each turn in the conversation, users select a symptom associated with depression, describe that symptom to a video recording of a “teacher,” and then receive feedback based on the response. Each conversation is unique, so users can practice honing their conversational skills until they feel ready to share their stories with adults who can help them.
Williams plans to use his grant from the Noonan Fund to recruit people to test the app, including Black youth with autism, parents, and caregivers, as well as social workers, special education teachers, and speech pathologists. He teamed up with several nonprofit organizations and state agencies to help recruit participants, including the Black Autism Coalition and the Massachusetts Rehabilitation Commission.
“The goal is for the app to support positive mental health conversations for Black autistic youth. When they get done using it, I want them to feel more comfortable talking about depression, have a better understanding of depression, and be more inclined to talk about their symptoms.”
All participants will take surveys before and after they use the program, which will enable Williams to evaluate the impact of the intervention. He hopes to capture changes in their knowledge of depression, perceptions of autism, and attitudes toward seeking help for mental health disorders.
Youth will be asked dozens of questions, such as whether it’s true or false that people with depression often speak in rambling and disjointed ways. Parents, caregivers, and other stakeholders will answer similar questions, including some about their overall views on the quality of mental health services available to youth on the autism spectrum.
“Even though youth will be using the app, we still need to know where it should be implemented, how long we should be using it for, and how much support people need to use it,” says Williams, who is conducting this research in collaboration with Winston Kennedy, an assistant professor of physical therapy, human movement, and rehabilitation sciences at Northeastern University. “So getting a three-point perspective, from youth, parents, and stakeholders, will give us a better understanding of how to improve this tool to be the best it can be.”
The researchers intend to make changes to the app based on feedback and publish their findings in peer-reviewed journals. Then, using the power of their preliminary data, they want to apply for funding from the National Institutes of Health to conduct a randomized controlled trial to see whether people who use the app experience better health outcomes than those who do not.
Williams envisions a future in which the training program is commercially available to schools, therapists, and parents, and he hopes to adapt the app to meet the needs of other populations, too.
“My goal is that anyone who wants to improve these kinds of conversational skills will be able to access this tool,” he says.
