Abstract
Autistic Individuals with or without co-occurring Mental Health Conditions Experience Challenges with Community Participation that can Affect Quality of life. These Challenges Involve, but are not Limited to, Transportation, Finances, Accessibility, Attitude towards Participation, and Infrastructure Issues. COVID-19 Added a new Layer of Community Participation Barriers for all Individuals, Especially Autistic Individuals. The purpose of this study is to understand the perceived community participation barriers and facilitators encountered by autistic individuals during a public health crisis using the Photovoice methodology. The study will compare these perceptions of autistic individuals with and without co-occurring mental health conditions during a public health crisis to determine if any distinctions can be determined. Photovoice, an established qualitative outreach methodology, was the foundation for the methods. Participants completed a narrative answering the question “what is a barrier or facilitator to your community participation?” Data were analyzed using grounded theory. Seventeen autistic participants with a mean age of 23 completed the Photovoice study. Eleven (65%) reported at least one co- occurring mental health condition. Data analysis resulted in two major themes COVID-19 and Transportation; and six subthemes access, safety, technology, leisure, shared experiences, and sensory. Autistic individuals with and without co-occurring mental health conditions chose to identify barriers more than facilitators. Participants without co-occurring mental health conditions viewed COVID-19 as a facilitator almost twice as often as those without. Participants with co-occurring mental health conditions reported transportation more as a barrier than those without. In this study conducted during COVID-19 regulations, autistic individuals identified COVID-19 and transportation as the primary barriers to community participation. COVID-19 was identified as both a barrier and a facilitator. Autistic individuals identified that COVID-19 enabled more on-line participation. Autistic individuals with co-occurring mental health conditions can experience a greater increase in symptoms when daily routines and participation are affected. Disruption and changes in participation for the autistic community during the COVID-19 pandemic can have future implications on this population’s ability to reintroduce themselves into community participation. Identified facilitators; technology, shared experiences, and leisure are useful tools to combat the participation barriers.
Similar content being viewed by others
References
Amaral, D. G., & de Vries, P. J. (2020). COVID-19 and Autism Research: Perspectives from around the Globe. Autism Research, 13(6), 844–869. https://doi.org/10.1002/aur.2329.
Ameis, S. H., & Szatmari, P. (2015). Common psychiatric comorbidities and their assessment. In E. Anagnostou & J. Brian (Eds.), Clinician’s Manual on Autism Spectrum Disorder (pp. 19–32). Springer International Publishing. https://doi.org/10.1007/978-3-319-03056-2_3.
Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Co**, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 61. https://doi.org/10.1186/s13229-020-00365-y.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5 vol.). American Psychiatric Association.
Bennett, A. E., Miller, J. S., Stollon, N., Prasad, R., & Blum, N. J. (2018). Autism spectrum disorder and transition-aged youth. Current Psychiatry Reports, 20(11), 103. https://doi.org/10.1007/s11920-018-0967-y.
Bezyak, J. L., Sabella, S., Hammel, J., McDonald, K., Jones, R. A., & Barton, D. (2020). Community participation and public transportation barriers experienced by people with disabilities. Disability and Rehabilitation, 42(23), 3275–3283. https://doi.org/10.1080/09638288.2019.1590469.
Bishop-Fitzpatrick, L., Smith DaWalt, L., Greenberg, J. S., & Mailick, M. R. (2017). Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder: Recreational activities and quality of life in ASD. Autism Research, 10(5), 973–982. https://doi.org/10.1002/aur.1753.
Brown, S. L., Pearl, A. M., Brusilovskiy, E., Murray, M. J., Townley, G., Edwards, E., & Salzer, M. S. (2022). Examining differences in Community participation in young adults with Autism Spectrum Disorder. Inclusion, 10(3), 213–225. https://doi.org/10.1352/2326-6988-10.3.213.
Cassidy, S. A., Nicolaidis, C., Davies, B., Rosa, S. D. R., Eisenman, D., Onaiwu, M. G., Kapp, S. K., Kripke, C. C., Rodgers, J., & Waisman, T. (2020). An Expert discussion on Autism in the COVID-19 pandemic. Autism in Adulthood, 2(2), 106–117. https://doi.org/10.1089/aut.2020.29013.sjc.
Catalani, C., & Minkler, M. (2010). Photovoice: A review of the Literature in Health and Public Health. Health Education & Behavior, 37(3), 424–451. https://doi.org/10.1177/1090198109342084.
Chan, D. V., Klinger, M. R., Adkisson, K. A., & Klinger, L. G. (2021). Examining environmental predictors of Community participation for adults with Autism Spectrum Disorder Using Geographic Information Systems (GIS). Journal of Autism and Developmental Disorders, 51(7), 2531–2537. https://doi.org/10.1007/s10803-020-04660-8.
Cheak-Zamora, N. C., Teti, M., & Maurer-Batjer, A. (2018). Capturing experiences of Youth with ASD via Photo Exploration: Challenges and resources becoming an adult. Journal of Adolescent Research, 33(1), 117–145. https://doi.org/10.1177/0743558416653218.
Creswell, J. W., Hanson, W. E., Plano, C., V. L., & Morales, A. (2007). Qualitative research designs: Selection and implementation. The Counseling Psychologist, 35(2), 236–264. https://doi.org/10.1177/0011000006287390.
Croke, L. (2020). Public health emergencies underscore the importance of nurse well-being. AORN Journal, 112(2), https://doi.org/10.1002/aorn.13152.
Dassah, E., Aldersey, H. M., & Norman, K. E. (2017). Photovoice and persons with physical disabilities: A sco** review of the literature. Qualitative Health Research, 27(9), 1412–1422. https://doi.org/10.1177/1049732316687731.
Friedman, C., & Rizzolo, M. C. (2016). The State of Transportation for people with Intellectual and Developmental disabilities in Medicaid Home and Community-Based services 1915(c) waivers. Journal of Disability Policy Studies, 27(3), 168–177. https://doi.org/10.1177/1044207316644413.
Gagne, C., Bowers, A., Bloch, P., Furlong-Norman, K., McNamara, S., & Russinova, Z. (2019). Combating prejudice and discrimination through photovoice empowerment. Boston University Center for Psychiatric Rehabilitation.
Giummarra, M. J., Randjelovic, I., & O’Brien, L. (2022). Interventions for social and community participation for adults with intellectual disability, psychosocial disability or on the autism spectrum: An umbrella systematic review. Frontiers in Rehabilitation Sciences, 3, 935473. https://doi.org/10.3389/fresc.2022.935473.
International statistical classification of diseases and related health problems (10th revision) (2nd ed.) (2005). World Health Organization.
Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819–829. https://doi.org/10.1016/S2215-0366(19)30289-5.
Nicholas, D. B., Hedley, D., Randolph, J. K., Raymaker, D. M., Robertson, S. M., & Vincent, J. (2019). An Expert discussion on employment in Autism. Autism in Adulthood, 1(3), 162–169. https://doi.org/10.1089/aut.2019.29003.djn.
Pellicano, E., & Stears, M. (2020). The hidden inequalities of COVID-19. Autism, 24(6), 1309–1310. https://doi.org/10.1177/1362361320927590.
Ritvo, R. A., Ritvo, E. R., Guthrie, D., Ritvo, M. J., Hufnagel, D. H., McMahon, W., Tonge, B., Mataix-Cols, D., Jassi, A., Attwood, T., & Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-revised (RAADS-R): A scale to assist the diagnosis of Autism Spectrum disorder in adults: An International Validation Study. Journal of Autism and Developmental Disorders, 41(8), 1076–1089. https://doi.org/10.1007/s10803-010-1133-5.
Song, W., Shea, L., Nonnemacher, S. L., Brusilovskiy, E., Townley, G., & Salzer, M. S. (2021). Community participation comparison between adults on the autism spectrum and adults in the General Population. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05059-9.
Thomas, E. C., Snethen, G., O’Shea, A., Suarez, J., Hurford, I., & Salzer, M. S. (2020). An examination of the Community Participation Interests of Young Adults with Serious Mental illnesses. The Journal of Behavioral Health Services & Research, 47(4), 526–543. https://doi.org/10.1007/s11414-019-09678-0.
Tint, A., Maughan, A. L., & Weiss, J. A. (2017). Community participation of youth with intellectual disability and autism spectrum disorder: Participation of youth with ASD. Journal of Intellectual Disability Research, 61(2), 168–180. https://doi.org/10.1111/jir.12311.
Tobin, M. C., Drager, K. D. R., & Richardson, L. F. (2014). A systematic review of social participation for adults with autism spectrum disorders: Support, social functioning, and quality of life. Research in Autism Spectrum Disorders, 8(3), 214–229. https://doi.org/10.1016/j.rasd.2013.12.002.
Wang, C., & Burris, M. A. (1997). Photovoice: Concept, Methodology, and use for Participatory needs Assessment. Health Education & Behavior, 24(3), 369–387. https://doi.org/10.1177/109019819702400309.
Young, J., Lehrer-Stein, J., & National Council on Disability Members and Staff. (2012). &. National disability policy: A progress report. http://www.ncd.gov/progress_reports/Aug202012.
Author information
Authors and Affiliations
Corresponding author
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Davidson, A., Pfeiffer, B. Community Participation Challenges for Young Adults with Autism Spectrum Disorders During COVID-19 A Photovoice Study. Community Ment Health J 60, 60–71 (2024). https://doi.org/10.1007/s10597-023-01199-7
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10597-023-01199-7