ArticleFrontiers in psychology2022
From ivory tower to inclusion: Stakeholders' experiences of community engagement in Australian autism research.
Article in Frontiers in psychology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- 'They Even Have the Capacity, but the Places Aren't Prepared to Receive Them': Community Environment and Participation of Autistic Children in a Family-Engaged Research Analysis.Autism research : official journal of the International Society for Autism Research · 2026Observational
- Diversity of words and words for diversity.Frontiers in psychiatry · 2026Article
- "...Fallen through the cracks...": A Co-Produced Qualitative Exploration of Autistic Student Experiences at an Irish Higher Education Institution.Autism in adulthood · 2025Article
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Reporting community involvement in autism research: Findings from the journal Autism.Autism : the international journal of research and practice · 2025Article
- Oxytocin in autism: Rethinking treatment and research through a neurodivergent perspective.Psychoneuroendocrinology · 2025Article
- Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review.Journal of eating disorders · 2024Review
- Redesigning an Autism Evidence-Based Practice Adoption and Decision-Making Implementation Toolkit for Middle and High Schools.School mental health · 2024Article
- Barriers to healthcare for Australian autistic adults.Autism : the international journal of research and practice · 2024Article
- Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?Autism in adulthood · 2023Article
- 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children.Autism & developmental language impairmentsArticle
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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