From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

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Houting, J. d., Higgins, J. M., Isaacs, K., Mahony, J., & Pellicano, E. (2022). From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research. Frontiers in Psychology, 13, 876990-876990. https://doi.org/10.3389/fpsyg.2022.876990

Publication date: 25 Aug 2022 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
5
Publication authors identified as autistic
3 / 5 (60.0%)
  1. Jacquiline den Houting *
  2. Julianne M. Higgins *
  3. Kathy Isaacs *
  4. Joanne Mahony
  5. Elizabeth Pellicano

Abstract

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an "ivory tower," disconnected from community members' lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members' roles tended toward tokenism. Third, our participants spoke of the need to "bridge the gap" between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as "the way of the future." Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.

Bibliography cited by this reference

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Cited references
48
Total cited references integrated for this publication.
Cited references with an identified autistic author
20 / 48 (41.7%)
Cited author occurrences identified as autistic
47 / 197 (23.9%)
Among occurrences linked to AutiHub author records: 47 / 138 (34.1%). Distinct cited authors identified as autistic: 33 / 161 (20.5%).
Cited author occurrences linked to AutiHub author records
138 / 197 (70.1%)
Distinct linked cited authors: 106 / 161 (65.8%)
Linked cited-author occurrences not identified as autistic
91 / 138 (65.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 91 / 197 (46.2%). Distinct linked cited authors not identified as autistic: 73 / 106 (68.9%).
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