Date Presented 04/06/19
Adults with autism experience significant health disparities, including higher rates of chronic disease, less access to health services, and younger mortality rates. In this research project, we used qualitative methods to interview adults with autism, their caregivers, and their healthcare providers to develop an understanding of why these health disparities occur and to guide future intervention work.
Primary Author and Speaker: Jaclyn Schwartz
Contributing Authors: Jeanette Alam, Elena Cotayo, Sofia Espinosa, Dominique Grossman, Patricia Herdocia, Veronica Hernandez, Berline Lherisson, Karen Lopez, Jennifer Mejia, Cati Rodriguez, Melissa Rodriguez, Jessica Torres
PURPOSE: Adults with Autism Spectrum Disorder (ASD) have significantly higher rates of psychiatric disorders, immune disorders, gastrointestinal disorders, sleep disorders, seizures, obesity, heart disease, and diabetes (Croen et al., 2015). Further, they are far less likely to access health care services than people without disabilities. Subsequently, adults with developmental disabilities have poorer health and a decreased life expectancy when compared to the general adult population (Mouridsen et al., 2008). We sought to answer the question “why do adults with ASD have poor health outcomes?” Information from this study will be used to inform future intervention work.
DESIGN: Using a qualitative grounded theory approach, the research team sought to develop a theory describing the factors affecting the health of adults with ASD. To participate in this study individuals were required to be an adult with ASD (with cognitive capacity to consent into the study), a caregiver of an adult with ASD (of any severity level), or a health care provider currently serving adults with ASD (of any severity level). Participants were recruited through social media groups, health clinics, and word of mouth.
METHOD: Adults with ASD, caregivers, and health care providers engaged in a semi-structured interview regarding barriers and facilitators to quality care. Interviews were audio recorded and transcribed verbatim. Trained research assistants completed constant comparative analysis (consisting of open, axial, and selective coding) using QSR International's NVivo 11 Software. To ensure reliability and validity, we triangulated the findings across participant groups and key resources, we engaged in member checking, held weekly lab meetings to discuss coding, and evaluated inter-rated reliability between coders.
RESULTS: Three adults with ASD, 8 caregivers, and 4 health care providers participated in the study. Data analyses revealed four themes.
Theme 1: Time - Adults with ASD, caregivers, and providers indicated that there was insufficient time during clinical visits to address the adult’s needs in an accessible way. Adults with ASD and caregivers also reported limited time to engage in self-management activities.
Theme 2: Communication – Adults with ASD and caregivers reported dissatisfaction with providers quality of communication. Adults with ASD further reported issues around privacy from their parents when working with health care providers on delicate topics.
Theme 3: Resources – Adults with ASD, caregivers, and providers reported lack of funding for the full scope of services needed. Some adults with ASD lacked insurance and were unable to attain any services.
Theme 4: Self-management – Data from all participant groups suggested that adults with ASD were not engaging in self-management behaviors with adequate performance quality and consistency needed to prevent chronic conditions.
CONCLUSION: The existing literature suggests that adults with ASD have worse health outcomes than their peers but fails describe why these differences occur. Findings from this study presents a theoretical model that indicates that health of adults with autism is affected by time, communication, resources, and self-management. The impact of this work suggests that therapeutic intervention targeted to communication and self-management skills and policy intervention targeted at resources and duration of services may improve health of adults with autism. Further research is warranted. Occupational therapy professionals are well positioned develop, test, and implement health management interventions for adults with autism with the long-term goal of improving overall well-being.
References
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814-823.
Krahn, G. L., & Fox, M. H. (2014). Health disparities of adults with intellectual disabilities: what do we know? What do we do?. Journal of Applied Research in Intellectual Disabilities, 27(5), 431-446.
Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: an update. Autism, 12(4), 403-414.
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of general internal medicine, 28(6), 761-769.
