From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research

Abstract

The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary aim, from an initial need to acquire naturalistic conversation data for my linguistic PhD research investigating a theoretical reframing of autistic language use as ‘different’ rather than ‘deficient’. The desire to make the data collection a meaningful experience for the participants in its own right was central to the research design, and so the Talking Together loneliness project was devised as a way to achieve this. However, it was not until the research was under way that the potential for valuable, immediate impact became apparent. This article reflects on the successes and challenges of the Talking Together pilot as a piece of autistic-led participatory research, and explores how the principles of engaged, participatory research can be applied so as to maximize impact, even where engagement may not be a primary aim. It also explores the ‘participatory’ nature of participatory research where the researcher belongs to the marginalized stakeholder group.