Optimising recruitment and retention for autistic adults

The aim of this study was to identify motivators and barriers to participation in longitudinal research for adults (both autistic and non-autistic) with the purpose of informing the design of recruitment and retention strategies for future research projects. For researchers, the recruitment and retention of autistic adults poses difficulties; longitudinal studies face particular challenges. To date, factors influencing the recruitment and retention of autistic adults for research have been unexamined in the literature.

The results of the study showed that the motivators, inhibitors and enablers of participation of adults in longitudinal autism spectrum research differed distinctly both between and within each category of participants. While helping others was a key motivator across all categories, participants also sought ‘personal benefit’ from participation. ‘Personal benefit’ differed markedly between categories; for autistic adults, it was interpreted according to their individual preferences and needs. Results indicate that the inconvenience of time and travel required, and insensitivity to an individual’s personal needs and preferences for engaging with the world and others are key inhibitors; maximising choice for all aspects of participant involvement is a vital enabler; and the use of financial and other extrinsic rewards is problematic.