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

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Williams, G., Ellis, R., Holloway, W., Caemawr, S., Craine, M., Williams, K., & Grant, A. (2024). ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production. Autism, 29(9), 2205-2215. https://doi.org/10.1177/13623613241253014

Publication date: 17 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
7
Publication authors identified as autistic
7 / 7 (100.0%)
  1. Gemma Williams *
  2. Rebecca Ellis *
  3. Willow Holloway *
  4. Selena Caemawr *
  1. Monique Craine *
  2. Kathryn Williams *
  3. Aimee Grant *

Abstract

This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings – involving four Autistic community leader members and three Autistic researchers – was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member ‘field’ notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider- only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production. Lay Abstract 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
32
Total cited references integrated for this publication.
Cited references with an identified autistic author
15 / 32 (46.9%)
Cited author occurrences identified as autistic
64 / 118 (54.2%)
Among occurrences linked to AutiHub author records: 64 / 103 (62.1%). Distinct cited authors identified as autistic: 48 / 99 (48.5%).
Cited author occurrences linked to AutiHub author records
103 / 118 (87.3%)
Distinct linked cited authors: 84 / 99 (84.8%)
Linked cited-author occurrences not identified as autistic
39 / 103 (37.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 39 / 118 (33.1%). Distinct linked cited authors not identified as autistic: 36 / 84 (42.9%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (1) · DataCite: not found (1)
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