‘Photovoice’ research method helps teens and young adults with autism to express stresses and comforts in the transition to adulthood
As parents and autism researchers know well, the transition from school to adulthood can present significant challenges for teens who have autism spectrum disorder (ASD). Until recently, research aimed at identifying and addressing these challenges relied primarily on interviews with parents. Gathering firsthand accounts from teens remained difficult.
Now, researchers at the University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders report their successful use of Photovoice
, a creative research method that allows study participants to use photography to identify and share their experiences.
"While we have long known that youth with ASD face challenges transitioning to adulthood, most research has focused only on perspectives of parents or caretakers," says study co-author Nancy Cheak-Zamora. "In order to truly understand the perspective of young people with ASD, who struggle with limited communication and fears, we needed to think outside the box to help them share their stories. Giving them cameras so they could tell their stories through images allowed us to determine what these young adults thought and felt."
Based on this method, the researchers gave cameras to 11 study participants, ages 16 to 25, and asked them to capture the experience of “growing up” – both what they enjoyed and what challenged them. The researchers used the photos to spark a dialogue with each participant. They then analyzed and categorized the teen’s responses to identify themes of importance.
For instance, many of the teenagers took photos that helped them describe the stress around learning new skills, taking on new responsibilities, socializing and the prospect of leaving school and living more independently as an adult. Another emerging theme involved feelings of sadness and loneliness.
On the “what helps me” side, many of the young participants took pictures of animals and talked about how animals were important companions that helped relieve loneliness.
"Youth with ASD struggle with isolation and socializing with peers and family members," Dr. Cheak-Zamora says. "However, they continually try to put themselves out there and be more social and try to make friends. These were evident themes through the photographs taken."
The project’s findings will advance research designed to foster health and independence in young adults who have autism, she adds.
Journal of Developmental and Behavioral Pediatrics.
In addition to Dr. Cheak-Zamora, study co-authors included Michelle Teti, Anna Maurer-Batjer and Donna Halloran, all of the University of Missouri.
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