Participatory autism research: Early career and established researchers’ views and experiences
Authors: Pickard Hannah , Pellicano Elizabeth , den Houting Jacquiline , Crane Laura 
Published: June 2021

Despite more autism research taking place than ever before, there is a disconnect between the current landscape of autism research and what autistic people and their allies want from research. While participatory research has been proposed as a potential solution, we know little about how researchers (particularly, early career researchers) employ this approach. We interviewed 25 researchers (14 early career and 11 established researchers) about their views and experiences of participatory autism research. Through reflexive thematic analysis of interview and focus group data, we identified three themes. First, our participants emphasised the flexible nature of participatory research, and the many forms it can take; yet noted that this flexibility could cause confusion. Second, our participants highlighted the importance of building relationships with research partners, while commenting on the challenges around effective communication and working with diverse groups of people who may have limited research experience. Finally, participants described the challenges of working within academic environments that are not conducive to participatory research (e.g. due to limited time, funding and support). We discuss these issues with regard to changes required at both an individual and systemic level, ensuring that efforts are made to meaningfully involve autistic people and their allies in all stages of the research process.

Lay abstract

‘Participatory autism research’ refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or ‘themes’ discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not ‘count’ as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research.