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

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den Houting, J., 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
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
5
Publication authors identified as autistic
4 / 5 (80.0%)
  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

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 02:38.

Cited references
48
With a DOI
42
Without a DOI, from raw bibliography text
6
23 / 48 (47.9%) cited references include at least one author identified as autistic.
References with data to complete
4 / 48 (8.3%)
References with detected author names
45 / 48 (93.8%)
Without detected author names
3
Without a structured title
4
Without a stable identifier
5
References with raw author names still to review
0
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
197
From DOI or external metadata
197
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
144 / 197 (73.1%) names are linked to an author already present in AutiHub. 53 / 197 (26.9%) names are not yet linked.
Names linked to a person identified as autistic
64 / 197 (32.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 64 / 144 (44.4%). Distinct people identified as autistic: 47 / 161 (29.2%).
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