Examining Primary Care Experiences for Adults with Autism Spectrum Disorder

Background: Primary care is associated with positive outcomes for society, including improved access to health care services, health outcomes, and cost savings. However, few studies have documented the experiences of adults with autism spectrum disorder (ASD) in the primary care system. Of those, adults with ASD report multiple challenges with the receipt of primary care, decreased satisfaction, and increased unmet physical and mental healthcare needs. As adults with ASD represent a growing segment of society, the number who require primary care is expected to increase over the next decade. Consequently, there is a pressing need to improve the quality of primary health care for adults with ASD with empirically validated, client-centered strategies and tools.

Objectives: To identify perceived barriers and strategies to facilitate successful primary healthcare encounters for adults with ASD, as reported by adults with ASD, caregivers of adults with ASD, and primary care providers (PCPs) treating adults with ASD. These findings will identify potential areas to address obstacles to the provision of successful primary healthcare services for adults with ASD.

Methods: As part of a larger mixed methods design, adults with ASD (n=34), caregivers of adults with ASD (n=31), and PCPs treating adults with ASD (n=13) completed surveys. Survey topics included barriers to care as well as strategies previously utilized by the adult with ASD, caregiver, or PCP; the success of those strategies; and the potential of those strategies to improve care in the future. Participants were primarily located in Los Angeles, CA and Philadelphia, PA; this dual location enabled the collection of information from two underserved minority populations, Latinos and African Americans. For descriptive purposes, frequencies and percentages were calculated for all survey items.

Results: Multiple barriers to primary care were reported by adults with ASD and caregivers, including communication and sensory challenges. Adults with ASD and caregivers reported minimal use of strategies during primary care visits, but that those used were helpful to improve care (e.g., social story, environmental adaptations, practice visits). Expert PCPs reported utilizing strategies more frequently than novice PCPs. All consumer and provider respondent groups endorsed that multiple strategies had the potential to improve care in the future for adults with ASD (e.g., list of patient needs, visual schedule, environmental adaptations).

Conclusions: Adults with ASD experience challenges in the access to and provision of primary care, but believe multiple strategies have the potential to improve this care. These findings help identify priorities for intervention development in order to improve patient-centered care for this population.