A mixed-methods study of autistic and non-autistic community member participation in autism research

Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research’s best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research—research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization. Lay Abstract Participatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers’ attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers’ attitudes toward participatory research, and researchers’ insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees’ views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training.