TRANSLATING AUTISM STAKEHOLDERS’ PRIORITIES TO SHAPE RESEARCH AND DISSEMINATE SCIENTISTS’ FINDINGS TO THE AUTISM COMMUNITY AND PUBLIC

Autism spectrum disorder is a neurodevelopmental condition that is being identified in increasing numbers. As of 2022 data released this year, 3.2% of U.S. 8-year-olds at 16 study sites have been identified as having ASD. The causes of autism are complex. While genes are clearly a factor, increasing evidence suggests that nongenetic variables – termed “environmental exposures” – are also contributors to causes of autism and co-occurring conditions that can significantly impact the lives of people with autism and their families. Environmental exposures may be modifiable, holding promise that identifying and communicating them to the public could improve lives. Research priorities in this gene-by-environment (GxE) area have been largely shaped by researchers. However, it is crucially important to involve stakeholders to understand their needs, their priorities, and their views on the best ways to communicate GxE concepts and sensitively share research findings back to the community. As part of the GEARs ACE Network, one aim was to conduct this stakeholder research. In this talk, the authors present qualitative findings from focus groups conducted in four types of stakeholder groups. After developing an interview guide with help from a community advisory board, researchers conducted interviews with four key stakeholder groups: adults with autism; caregivers; medical providers; and adult siblings of people with autism. The guide asked multiple open-ended questions about 1) co-occurring conditions; 2) genetics; 3) environmental factors; and 4) information sources. The research team included a member with autism. Purposeful online sampling was used to recruit participants in the United States. Data were drawn from four 60-to-90-minute sessions that each involved a maximum of six participants. Data were analyzed using a content analysis deductive approach. Across the four groups, a key theme that emerged was the need for immediate support to mitigate the impacts of multiple co-occurring conditions. Many autistic participants expressed a preference to focus on improving specific challenging symptoms/co-occurring conditions, as opposed to fully preventing autism. Participants had a desire for more genetic and environmental research related to current quality of life. Participants expressed interest in genetics but also shared concern about the fraught history of genetic research. Groups varied in their preferred sources of information, as well as what they found trustworthy. Groups noted the importance of disseminating information in a way that does not feed negative perceptions of an autism diagnosis or convey blame on parents regarding modifiable risk factors. Findings inform what questions researchers should address to meet the needs of stakeholders and how those results should be translated back to the community and the public to maximize their impact.