(PS2-50) Behavioral Health & Healthcare Experiences Among Autistic Adults in the All of Us Research Program

Background: One in 45 American adults has a documented autism diagnosis. Autistic people, many of whom identify as part of a larger disability community, represent a substantial proportion of the population that experiences disparate behavioral health outcomes and access to services in the United States. For example, >80% of autistic people have been diagnosed with at least one psychiatric disorder in their lifetimes, underscoring the need for research that aims to reduce these disparities among populations who have historically been underrepresented in behavioral health research. Moreover, there is increasing interest in understanding the impact of adverse life experiences (e.g., stressful events, poor healthcare experiences) and marginalization on behavioral health challenges among autistic adults.

In an effort to rectify these disparities, the goal of the current research study is to examine available behavioral health data among people who identify as autistic within the All of Us (AoU) Research Program. The AoU Research Program is an NIH-funded effort to recruit populations that have been historically underrepresented in biomedical research (e.g., racial/ethnic minorities, LGBTQ+, individuals with disabilities). Specifically, we aimed to evaluate reported behavioral health problems and service use, and to explore whether adverse healthcare experiences were associated with behavioral health outcomes among autistic people.

Methods: Descriptive analyses were used to characterize the behavioral health and healthcare experiences within an identified cohort of autistic individuals. The autistic cohort and the larger AoU sample were compared on key healthcare experiences.

Results: The autism cohort in the AoU Research Program (v.7, N=1231) predominantly identified as White (78%) and cisgender (76%); 47% identified their sexual orientation as heterosexual/straight. The most frequent psychiatric diagnoses included depression (69%), anxiety disorders (65%), ADHD (45%)and PTSD (38%). Moreover, in terms of healthcare experiences, more than 35% of autistic adults reported frequently experiencing healthcare discrimination. Moreover, relative to the larger AoU sample, autistic individuals were 4 times more likely to report frequently experiencing discrimination in healthcare settings relative to non-autistic individuals. The greatest discrepancy in responses between autistic and non-autistic individuals involved situations in which they frequently felt the provider does not listen to them (26% vs. 5%) and acts as if he or she is better than them (15% vs. 3%).

Implications: Preliminary findings from this ongoing study suggest that in addition to having high rates of psychiatric disorders (e.g., depression, anxiety), they experience notably higher levels of discrimination in healthcare settings compared to non-autistic individuals. Additional planned analyses using the AoU database will further explore additional risk and protective factors for autistic adults’ mental health. Future research may contrast findings with additional large autistic and/or comparison samples, ultimately with significant potential for meaningful clinical, research, and policy implications.