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

This publication is included in the Autistic Autism Scholarship Project. seven authors of this publication are identified as autistic in the project.

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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
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

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.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 07:50.

Cited references
32
With a DOI
24
Without a DOI, from raw bibliography text
7
17 / 32 (53.1%) cited references include at least one author identified as autistic.
References with data to complete
3 / 32 (9.4%)
References with detected author names
30 / 32 (93.8%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
7
References with raw author names still to review
1
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
118
From DOI or external metadata
118
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
105 / 118 (89.0%) names are linked to an author already present in AutiHub. 13 / 118 (11.0%) names are not yet linked.
Names linked to a person identified as autistic
77 / 118 (65.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 77 / 105 (73.3%). Distinct people identified as autistic: 61 / 99 (61.6%).
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    OpenAlex
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    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
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    Crossref OpenAlex OpenCitations
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    Crossref OpenAlex OpenCitations
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    Crossref OpenAlex OpenCitations
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    Type: Other
    Crossref
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    Crossref
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