ArticleAutism : the international journal of research and practice2022
Participatory autism research: Early career and established researchers' views and experiences.
Article in Autism : the international journal of research and practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers.
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Who cites it
32 citing papers in PubMed.
- Development of Autism-Inclusive Approaches for Everyday Life in a Participatory Process: From Challenges to Resolutions.Journal of autism and developmental disorders · 2026Article
- Building recurring public and patient involvement in adult autism psychiatry and neurodevelopmental research: lessons from the first year of a patient panel and advisory board.Research involvement and engagement · 2026Article
- "They Really Save Us From Ourselves" : Autism Researchers' Insights on Community Engagement and Ethics.Journal of bioethical inquiry · 2026Article
- Enhancing inclusion of neurodivergent participants in medical research: an intersectional inclusion-by-design approach.Frontiers in medicine · 2026Article
- Diversity of words and words for diversity.Frontiers in psychiatry · 2026Article
- Fair foundations: ensuring epistemic justice in neurodiversity research and practice.Frontiers in psychology · 2026Article
- Understanding the workplace needs of autistic adults in Singapore: insights to inform inclusive AI support.Frontiers in psychiatry · 2026Article
- Targeting everyday decision makers in research: early career researcher and patient and public involvement and engagement collaboration in an AI-in-healthcare project.Research involvement and engagement · 2025Article
- Development of a Self-Report Measure of Prediction in Daily Life: The Prediction-Related Experiences Questionnaire.Journal of autism and developmental disorders · 2025Article
- Integrating Antiracism and Life Course Frameworks in Research with Autistic Minority Transition-Aged Youth and Young Adults.Autism in adulthood · 2025Article
- Reporting community involvement in autism research: Findings from the journal Autism.Autism : the international journal of research and practice · 2025Article
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- What are the autism research priorities of autistic adults in Scotland?Autism : the international journal of research and practice · 2024Article
- Barriers and facilitators to ethical co-production with Autistic people with an eating disorder.Journal of eating disorders · 2024Article
- Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom.Autism in adulthood · 2024Article
- A scoping review of autism research conducted in Central Asia: Knowledge gaps and research priorities.Autism : the international journal of research and practice · 2024Article
- Applied Principles for Inclusive Practice in Neurodevelopmental Research: A Selection and Report of Illustrative Case Studies.Current developmental disorders reports · 2024Review
- 'Building bridges': reflections and recommendations for co-producing health research.Research involvement and engagement · 2023Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
lay abstract'Participatory autism research' refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or 'themes' discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not 'count' as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research.
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