Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
For young adults and adults with autism, the outcomes related to independence, social relationships, employment status, and living arrangements have been poor. This session will share research using PhotoVoice to explore the lived experience of young adults with autism in a community-based independent-living residence. Challenges and opportunities for independence as seen through photos and reflections on the OT role will be shared.
Primary Author and Speaker: Paula J. Thompson-Costello
Additional Authors and Speakers: Mackenzie Traub, Eleanor Sweeney, Mallory Schrier, and Hannah R. Dau
PURPOSE & RATIONALE: The purpose of this research study was to gather perspectives of young adults with ASD through photos regarding the benefits of their community-based independent living group home in supporting their quality of life. The majority of adults with Autism Spectrum Disorder (ASD) experience poor functional outcomes related to independence, social relationships, employment status, and living arrangements (Gray et al, 2014). Despite the increased availability of evidence-based interventions provided by occupational therapy and legislation to support services for the school-aged population, the majority of young adults and adults with ASD remain dependent upon family or support services (Levy & Perry, 2011), even among higher functioning adults living in independent or semi-independent situations (Howlin, Moss, Savage, & Rutter, 2013). Despite the prevalence of dependence, there is a reported desire for independence (Cheak-Zamora, Teti, Maurer-Batjer, & Halloran, 2016). This mismatch between reality and desire highlights how the majority of research on ASD focuses on other people's accounts of the disorder, with much less evidence reporting the perspective of those living with ASD (DePape & Lindsay, 2016). Research reporting the firsthand experience of those with autism is increasing, but there is still a need to focus on the lived experience of adolescents transitioning from high school to post-secondary education and employment (DePape & Lindsay, 2016) so that occupational therapists can facilitate more positive outcomes.
METHODS: A phenomenological qualitative research design was used for this study. Photovoice, a participatory method that uses images and discussion to advocate for change (Wang & Burris, 1997) was combined with interviews to gather data on the meaning of the photos for the participants. Six-step thematic analysis (Braun & Clarke, 2016) was performed to determine recurring patterns of themes among the participants' photos. Convenience sampling was used to recruit eight individuals all participating in one community-based residential program. Inclusion criteria were residents of the program, diagnosis of ASD, over age 18 years, and able to use a device to take pictures. Exclusion criteria was being less than 18 years old.
RESULTS: Thematic analysis revealed four main themes that contributed to the participants' positive quality of life and lived experiences. These themes are connection, self-concept, the value of health, and meaningful routines. Participants felt supported by connections to friends, coworkers, and family. They valued health through participation in occupations that were active, happened in nature, and were often spent with others. They expressed their identity through occupations that were often creative and found productivity and meaning in routines such as work and regularly occurring social situations.
CONCLUSIONS: These results highlight the value of gaining first-hand experiences of individuals with ASD. The resulting themes indicate people with ASD value active participation and occupational engagement as contributing to their quality of life and independent living the same as their neurotypical peers. OTs should advocate for individuals with ASD to use their voices to share their desires, values, and perspectives to seek the same quality of independent living as their peers. OTs can advocate for policy changes to accept the self-reports of people with ASD for major decisions related to services and programming. This data analysis helps us understand what individuals with ASD identify as positive supports to independent living and how OTs can use this information to better facilitate more positive outcomes for this population
References
Cheak-Zamora, NC, Teti, M., Maurer-Batjer, A., & Halloran D. (2016). Snapshots of growing up: Youth with autism explore adulthood through photovoice. Journal of Developmental Behavioral Pediatrics, 37(6), 433-441. https://doi.org/10.1097/DBP.0000000000000313
DePape, A., & Lindsay, S. (2016). Lived experiences from the perspective of individuals with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 31, 60-71. https://doi.org/10.1177/1088357615587504.
Gray, K.M., Keating, C.M., Taffe, J.R., Bereton, A.V., Einfeld, S.L., Reardon, T.C., & Tonge, B.J. (2014). Adult outcomes in autism: Community inclusion and living skills. Journal of Autism and Developmental Disorders, 44, 3006-3015. https://doi.org/10.1007/s10803-014-2159-x
Krutt, H., Dyer, L., Arora, A., Rollman, J., & Jozkowski, A.C. (2018). Photovoice is a feasible method of program evaluation at a center serving adults with autism. https://doi.org/10.1016/j.evalprogplan.2018.02.003
