‘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 had publicly identified as autistic. [Learn more about this mention]

- 49% of authors cited in the bibliography of this resource have publicly identified as autistic (50 out of 102 authors).
- 63% of references cited in this resource contain at least one author who has publicly identified as autistic (17 out of 27 references).

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Summary/Presentation

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.

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  • S. Cassidy, S. Cassidy, K. Gould, E. Townsend, M. Pelton, A. Robertson, J. Rodgers (2019). "Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample". Journal of Autism and Developmental Disorders 50. doi:10.1007/s10803-019-04323-3

  • B. A. Israel, A. J. Schulz, E. A. Parker, A. B. Becker (2001). "Community-based participatory research: Principles, rationale and policy recommendations." Successful Models of Community-Based Participatory Research, 14(2), doi:10.1177/109019810102800209

  • H. Kara (2017). "Identity and power in co-produced activist research". Qualitative Research 17. doi:10.1177/1468794117696033

  • A. Lorde (2007). "Sister outsider: Essays and speeches by Audre Lorde." Crossing Press, Random House. (Original work published 1984)

  • C. Michael (2021). "Is Being Othered a Co-Occurring Condition of Autism?". Autism in adulthood : challenges and management doi:10.1089/aut.2021.0019

  • D. Milton*, B. Heasman, E. Sheppard (2018). "Double empathy." In F. Volkmar (Ed.), Encyclopedia of autism spectrum disorders (pp. 1–8). Springer.

  • A. Navani, R. Florisson, M. Wilkes (2023). "The disability gap: Insecure work in the UK." The Work Foundation at Lancaster University.

  • C. Naylor (2023). "Much better set up to do my best work. What does ‘neurodiversity-affirming practice’ mean to the autistic community?" [Unpublished DAppPsych thesis]. University of Nottingham. (Source)

  • C. Nicolaidis, D. Raymaker* (2015). "Community based participatory research with communities defined by race, ethnicity, and disability: Translating theory to practice." In H. Bradbury (Ed.), The SAGE handbook of action research (pp. 167–178). Sage.

  • E. Pellicano (2020). "Commentary: Broadening the research remit of participatory methods in autism science - a commentary on Happé and Frith (2020).". Journal of child psychology and psychiatry, and allied disciplines doi:10.1111/jcpp.13212

  • D. Raymaker* (2017). "Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy". Action Research 15. doi:10.1177/1476750316636669

  • D. Rose, J. Kalathil (2019). "Power, Privilege and Knowledge: the Untenable Promise of Co-production in Mental 'Health'". Frontiers in Sociology 4. doi:10.3389/fsoc.2019.00057

  • N. Walker* (2019). "Transformative somatic practices and autistic potentials: An autoethnographic exploration", [Doctoral dissertation, California Institute of Integral Studies]. (Source)

  • G. Williams*, R. Ellis*, H. Axbey, A. Grant* (in press). "Autistic, hysteric: Inequity in the United Kingdom’s healthcare for autistic people with wombs." In D. Milton (Ed.), The double empathy problem reader. Pavilion Publishing.

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