What are the autism research priorities of autistic adults in Scotland?

Abstract

Studies investigating autistic community research priorities indicate a mismatch between what autism research focuses on and what autistic people want to see researched. Further, there has not been a research priority-setting exercise specifically with autistic people in Scotland, where there are unique cultural, political, and social contexts. Using a community-based participatory design, we aimed to identify the research priorities of autistic adults living in Scotland. Autistic and non-autistic researchers designed and conducted a survey where 225 autistic adults rated and ranked research topics in order of importance and provided qualitative feedback on issues and questions important to them. The top five research priorities were: mental health/wellbeing, identification and diagnosis of autistic people, support services, knowledge and attitudes towards autistic people, and issues impacting autistic women. There were differences in priorities according to different intersections of identity, and qualitative responses indicated a desire for research to focus on support and understanding. The bottom three priorities concerned genetics, treatments and interventions, and causes. These findings emphasise the need to address the gap between what autism research focuses on and the everyday lives of autistic people.