Making the future together: shaping autism research through meaningful participation

Sue Fletcher-Watson*, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R. Parr, Elizabeth Pellicano

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review

    88 Citations (Scopus)
    334 Downloads (Pure)

    Abstract

    Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

    Original languageEnglish
    Pages (from-to)943-953
    Number of pages11
    JournalAutism
    Volume23
    Issue number4
    Early online date10 Aug 2018
    DOIs
    Publication statusPublished - 1 May 2019

    Bibliographical note

    Copyright the Author(s) 2019. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

    Keywords

    • autism
    • community
    • disability rights
    • involvement
    • methods
    • participatory research

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