UCLA

Autism research offers many direct benefits to participants, and the conclusions from studies are often integrated into evidence-based policy and practice within healthcare and education systems. For decades, autism research has vastly underrepresented the experiences of minoritized racial and ethnic groups. Without representation in research, diagnostic tools and therapeutic interventions may not address the specific needs and strengths of diverse populations. Ultimately, this gap perpetuates health, economic, and educational disparities for populations who face “double vulnerability” due to the intersection of marginalized race and disability status. Underrepresentation of minoritized populations can be understood using the Social-Ecological Model (SEM), which characterizes influences on health behavior into policy, community, organizational, interpersonal, and individual levels. This project utilized the SEM to evaluate the underrepresentation of Black, Hispanic, Asian, American Indian, and Pacific Islanders in autism research. First, autism research enrollment was examined through the lens of the SEM. Second, participant enrollment at the University of California, Los Angeles’s Center for Autism Research and Treatment (UCLA CART) was assessed using annual enrollment reports. Third, solutions to address under-enrollment of minoritized racial and ethnic groups at UCLA CART were identified using the SEM. Promising and evidence-based solutions include: community engagement, patient navigation intervention, improved research design and recruitment methods, culturally-adapted intervention, and standardized data reporting.