OBJECTIVE. Our objective was to identify perceived barriers and strategies to improve primary care encounters, as reported by adults with autism spectrum disorder (ASD), caregivers of adults with ASD, and primary care providers (PCPs) treating adults with ASD.METHOD. As part of a larger mixed-methods design, adults with ASD, caregivers, and PCPs (N = 78) in Los Angeles and Philadelphia completed surveys examining barriers to care and strategies to improve care.
RESULTS.Multiple barriers to 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 indicated that those used were helpful during care. Expert PCPs reported using strategies more frequently than novice PCPs. All respondent groups endorsed that strategies had the potential to improve care in the future for adults with ASD.
CONCLUSION.Opportunities exist for occupational therapy collaboration in primary health care and primary care education to improve care for adults with ASD.P rimary care is envisioned as a patient-centered, medical-home model that provides first-contact care, continuity of care over time, and coordination with other integral parts of the health system (American Academy of Family Physicians, 2019). It exemplifies a patient-centered culture that values the patient's needs above all else and considers the entire patient versus a single attribute of the patient's health (Bodenheimer & Pham, 2010;Starfield et al., 2005). A strong primary care system is associated with improved population health outcomes, greater access to health care services, higher patient satisfaction, and reduced health care spending (Atun, 2004).Disparities in health status exist, however, between people with and without disabilities. Adults with disability have reported fair or poor health significantly more than adults without disability (40% vs. 10%, respectively; Centers for Disease Control and Prevention, 2008). Consistent with current disability research, adults with autism spectrum disorder (ASD) have greater unmet physical and mental health care needs, higher use of the emergency department, and lower use of preventive services than adults without ASD (Nicolaidis et al., 2013).Few studies have documented the challenges that adults with ASD encounter within primary care. Reported barriers include strained patient-provider communication, an overstimulating clinical physical environment, ASD-related stigma, incorrect assumptions about the patient's level of functioning, and a lack of ASD-specific education for the provider