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Photography gives voice to teens participating in autism research

‘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.

The Thompson Center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).

"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.
The Thompson Center team recently published two papers based on their Photovoice research: "Capturing Experiences of Youth with ASD via Photo Exploration: Challenges and Resources Becoming an Adult," in the Journal of Adolescent Research.
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.
* Learn more about the Autism Speaks Autism TreatmentNetwork here.
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* Explore our archive of ATN expert-advice blogs and news stories here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.