A Systems-Level Model for Improving Care for Autistic Adults

Background and Purpose: Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. Due to limitations in surveillance measures and widespread public misconceptions about autism in adulthood however, the unique healthcare needs of autistic adults are often overlooked. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. In conversation with autistic adults about the challenges they experience in managing their health and interacting with healthcare systems, this study investigates barriers and facilitators to receipt of quality care for autistic adults. These barriers and facilitators are conceptualized through the SEIPS Model of Work System and Patient Safety. This model illustrates how specific work system structures interact with one another to inform healthcare processes and outcomes.

Methods: We conducted a series of one­-on-­one interviews with autistic adults (N=23) in the U.S. Autistic adults were eligible to participate if they: (1) were age 18+; (2) had an administrative, professional, or suspected diagnosis of autism spectrum disorder; and (3) were able to communicate in English. Semi-structured interviews probed experiences with health and healthcare across four domains: (1) health habits; (2) health problems; (3) health services; and (4) autism and aging impact. Data were transcribed and analyzed using conventional content analysis. Themes were identified in the text and aligned with the seven components of the SEIPS model (person, organization, tasks, tools/technology, environment, care processes, and patient outcomes).

Results: Several themes that aligned with components of the SEIPS model were identified from and repeated across the interviews with the autistic adults. Within the organization component for instance, barriers and facilitators that impacted their receipt of care included having informal and formal support, the length and strength of their relationships with healthcare providers, doctors' understanding and experience with autistic adults, as well as state and national healthcare policies and regulations. Many autistic adults noted that lights, noises, smells, and accessibility and layout of healthcare spaces and appointment scheduling systems impacted whether they would engage in work system tasks like visiting a healthcare provider when something is bothering them or accessing preventative care. Participants identified personal challenges they experienced including sensory differences and executive functioning challenges that impacted their ability to communicate and advocate for their healthcare needs.

Conclusions and Implications: Through the SEIPS model, we described the interactions between autistic adults and their healthcare systems to identify points for improvement and intervention. Our model suggests that to improve healthcare outcomes for autistic results, interventions must target both personal factors such as challenges with executive functioning as well as organizational and environmental factors, such as healthcare professionals' training in autism, accessibility of appointment scheduling systems, or the physical accessibility of healthcare spaces. We present an adapted SEIPS model emphasizing the need for the entire healthcare work system, rather than just one structure within it, to be well-designed for optimal performance. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.