“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

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Jose, C., George-Zwicker, P., Tardif, L., Bouma, A., Pugsley, D., Pugsley, L., Bélanger, M., Gaudet, J., & Robichaud, M. (2020). “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project. Research Involvement and Engagement, 6(1), 58-58. https://doi.org/10.1186/s40900-020-00233-2

Publication date: 27 Sep 2020 Added to AutiHub: 9 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Caroline Jose
  2. Patricia George-Zwicker
  3. Louise Tardif
  4. Aaron Bouma *
  5. Darlene Pugsley
  1. Luke Pugsley
  2. Mathieu Bélanger
  3. Jeffrey Gaudet
  4. Marc Robichaud

Abstract

Abstract Background Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

Bibliography cited by this reference

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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: 12 Sep 2026 07:09.

Cited references
68
With a DOI
44
Without a DOI, from raw bibliography text
24
14 / 68 (20.6%) cited references include at least one author identified as autistic.
References with data to complete
12 / 68 (17.6%)
References with detected author names
58 / 68 (85.3%)
Without detected author names
10
Without a structured title
12
Without a stable identifier
24
References with raw author names still to review
10
References with external metadata lookup issues
0
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
246
From DOI or external metadata
246
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
19
151 / 246 (61.4%) names are linked to an author already present in AutiHub. 95 / 246 (38.6%) names are not yet linked.
Names linked to a person identified as autistic
43 / 246 (17.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 43 / 151 (28.5%). Distinct people identified as autistic: 26 / 182 (14.3%).
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