‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production

Added on 26/06/2024

Type de contenu

Journal article of the type Report ( ; english)

Gemma Williams*, Rebecca Ellis*, Willow Holloway*, Selena Caemawr*, Monique Craine*, Kathryn Williams*, Aimee Grant* , ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production published in the journal "Autism", Preprint, 11 pages , doi:10.1177/13623613241253014

*All co-authors are autistics. [Learn more about this mention]

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In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

For your information:

(1) References in blue are resources listed on our site;

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site;

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic. [Learn more about this mention]

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