Date Presented 03/31/2022

Primary care encounters are reported to be challenging for autistic adults and their caregivers. The purpose of this presentation is to identify challenges experienced by this population, as reported by caregivers, as well as strategies to mitigate these difficulties.

Primary Author and Speaker: Leah I. Stein Duker

Additional Authors and Speakers: Elizabeth Goodman

BACKGROUND: Primary care is associated with greater access to healthcare services, improved health outcomes, cost savings, and mitigation of the negative impact of socioeconomic factors on health. Autistic adults experience barriers to utilization and high-quality primary care, reporting heightened stress, decreased satisfaction, and increased unmet physical and mental healthcare needs. The need to minimize existing barriers and identify strategies to facilitate successful healthcare encounters for consumers and primary care providers (PCPs) is increasingly important as autistic adults represent a growing segment of society. Currently, little research exists examining primary healthcare interventions for this population.

PURPOSE: To elucidate the barriers and facilitators to primary care health encounters to inform the development of new or improve existing interventions.

METHOD: As part of a larger mixed methods convergent parallel design study, we conducted interviews with caregivers of autistic adults living in Los Angeles (n = 21) and Philadelphia (n = 11). Caregiver interviews lasted an average of 34 minutes and were transcribed verbatim. Thematic analysis using a grounded theory approach was employed to describe barriers and facilitators to primary care health encounters. This project included a meaningful percentage of underserved and diverse populations, specifically Latino and African American participants.

RESULTS: Sixteen themes or subthemes emerged from the interviews and clustered broadly into two categories - barriers and facilitators to care. Reported barriers to primary care encounters for autistic adults included: (1) communication difficulties that resulted in misunderstandings between patients and PCPs; (2) PCP’s lack of autism-specific knowledge which impeded the receipt of patient-centered care; (3) sensory overstimulation from the physical environment that led to anxiety and emotional dysregulation; and (4) the caregiver burden which described the amplified stress and anxiety due to experiences with navigating the medical system, care coordination, and managing challenging behaviors exhibited by their adult child with autism. Facilitators to improve care included tailored accommodations for autistic adults; these differing strategies were implemented by: (1) PCPs who aimed to improve experience by employing time modifications (e.g., reduction of time in waiting room, increase in one-on-one time with the patient), using alternative equipment, and affording greater autonomy to the autistic adult during medical encounters; (2) caregivers who utilized pre-visit discussions to describe the impending healthcare encounter to the adult with autism, and strategically scheduled appointments to minimize discomfort and anxiety while waiting; and (3) autistic adults who used distraction techniques such as technology (e.g., iPad, phone, television) and targeted strategies to remove noxious sensory stimuli during healthcare encounters (e.g., removal of examination table paper, dimming lights, use of headphones).

CONCLUSION: This study describes perceived barriers to successful care as well as strategies to facilitate positive primary care health encounters for autistic adults, as reported by their caregivers. Findings have the potential to provide a blueprint for the development of client-centered interventions to improve the quality of primary healthcare services for this population.

IMPACT: With their expertise in ASD-related knowledge, advocacy, and examining person-environment fit, OT practitioners should be involved in collaborating to develop autism-specific medical education curricula, continuing education, and the development and testing of interventions to improve the primary healthcare encounters fo.


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