Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives

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Weiss, J. A., Modica, P. T., Gallant, C., Roudbarani, F., Weaver, C., Bouma, A., Goldsmith, L., Leef, J., & Lunsky, Y. (2025). Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives. Health Research Policy and Systems, 23(1), 140-140. https://doi.org/10.1186/s12961-025-01403-y

Publication date: 23 Oct 2025 Added to AutiHub: 9 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Jonathan A. Weiss
  2. Paula Tablon Modica
  3. Caitlyn Gallant
  4. Flora Roudbarani
  5. Courtney Weaver
  1. Aaron Bouma *
  2. Lianne Goldsmith
  3. Jonathan Leef
  4. Yona Lunsky

Abstract

BACKGROUND: Autistic adults experience disproportionately high rates of mental health challenges and encounter substantial barriers to care. While initiatives aimed at improving mental health literacy (MHL) offer one strategy for addressing these disparities, the processes through which such initiatives are co-produced with autistic adults and caregivers remain underexplored. Co-production - the collaborative development of resources or knowledge between researchers and community members - can enhance the relevance, authenticity, and impact of health initiatives. The central aim of this study was to understand how autistic adults and caregivers experienced their involvement in the co-production of an applied health research initiative. To inform future initiatives, there is a need to understand stakeholder experiences of the co-production process. METHODS: This study examined the experiences of stakeholders engaged in the co-production of a Canadian MHL resource for autistic adults and their families. Although the context of the project focused on MHL, the central aim was to understand how autistic adults and caregivers experienced their involvement in the co-production process. Semi-structured interviews were conducted with 24 autistic adults and caregivers who served as advisors in the Autism Mental Health Literacy Project (AM-HeLP). A reflexive thematic analysis approach was used to identify key experiential themes related to their involvement. RESULTS: A thematic analysis identified four main stakeholder experience themes: (1) the elements of co-production, (2) the collaboration process, (3) insights gained and (4) emotional impact of involvement. CONCLUSIONS: These findings highlight the critical importance of intentional, inclusive and trauma-informed co-production practices in applied health research. They offer practical guidance for researchers, service providers and policymakers seeking to authentically engage autistic adults and families in the development of health-related resources. Supporting equitable partnerships with autistic adults and caregivers is essential to advancing responsive and person-centred health policy and practice.

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Cited references
72
With a DOI
63
Without a DOI, from raw bibliography text
9
7 / 72 (9.7%) cited references include at least one author identified as autistic.
References with data to complete
9 / 72 (12.5%)
References with detected author names
66 / 72 (91.7%)
Without detected author names
6
Without a structured title
9
Without a stable identifier
9
References with raw author names still to review
6
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
337
From DOI or external metadata
337
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
10
131 / 337 (38.9%) names are linked to an author already present in AutiHub. 206 / 337 (61.1%) names are not yet linked.
Names linked to a person identified as autistic
25 / 337 (7.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 25 / 131 (19.1%). Distinct people identified as autistic: 23 / 308 (7.5%).
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