COLUMBIA, Mo. - An estimated 50,000 American adolescents with autism spectrum disorder (ASD) will turn 18 each year. Past research has indicated that the transition from school to adulthood presents significant challenges to youth with ASD, however, gathering firsthand accounts of these challenges has been limited due to youth's limited participation in research. Now, new studies from the University of Missouri, found that through use of photographs, adolescents with ASD were able to share their accounts of difficulties transitioning out of school, their struggles with socialization and how they use animals as a source of companionship.
"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," said Nancy Cheak-Zamora, as assistant professor in the School of Health Professions and a researcher at the Thompson Center for Autism and Neurodevelopmental Disorders. "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."
Cheak-Zamora, along with Michelle Teti, assistant professor in the School of Health Professions and Anna Maurer-Batjer, a graduate student in the School of Social Work, worked with 11 youth with ASD, between the ages of 16 and 25. Using Photovoice, a flexible research method that allows participants to use images to identify and share their experiences, participants were given cameras and instructions. They were asked to capture their experiences of growing up, both what they enjoyed and what challenged them, through photos. The photos helped promote dialogue with researchers who analyzed and categorized their responses to identify themes.
The images allowed researchers to explore perspectives of youth with ASD. Youth reported feeling stressed about learning new skills, taking on new responsibilities and being able to live as an adult. They also reported feelings of sadness and loneliness, and were much more confident talking about these issues through their photos. Many of the youth in the study took pictures of animals and talked about how animals helped combat feelings of loneliness.
"Youth with ASD struggle with isolation and socializing with peers and family members," Cheak-Zamora said. "However, they continually try to put themselves out there and be more social and trying to make friends. These were evident themes through the photographs taken."
The study, "Capturing Experiences of Youth with ASD via Photo Exploration: Challenges and Resources Becoming an Adult," recently was published in the Journal of Adolescent Research. The study, "Snapshots of Growing Up: Youth with Autism Explore Adulthood through Photovoice," was published in the Journal of Developmental and Behavioral Pediatrics. Initial funding for this research was provided by the Richard Wallace Faculty Incentive Grant Program and the Thompson Center for Autism and Neurodevelopmental Disorders. Photovoice works to build skills with disadvantaged and marginalized communities through photography and digital storytelling. Findings from the project will allow researchers to study health related independence in young adults with ASD.