Participatory research

What is participatory research?

Community-based participatory research (CBPR) means working with autistic and neurodivergent people as equal partners, rather than just studying them. Rooted in the neurodiversity movement’s call for autistic people to be involved in decisions about their lives, it values knowledge from lived experience alongside academic expertise, uses strengths-based perspectives, and recognises all forms of communication. Lay autistic co-researchers contribute at every stage, from shaping research questions to collecting data, interpreting findings, and sharing results.

"In our research, we aim to include neurodivergent community as co-researchers with varying levels of involvement from full co-production to consultation"

Why is it important?

This approach can produce more inclusive research tools, new ways of understanding concepts like autism, and findings that better reflect lived experience. It also acknowledges that people with different neurotypes may experience and interpret the world differently, a mutual gap in understanding sometimes called the double empathy problem. In our work, these principles have practical applications, such as improving experiences for autistic university students and the staff who teach them. The result is research that is ethical, relevant, and impactful, with autistic and neurodivergent voices at its core.

Resources

How to recruit and pay co-researchers

We have co-developed participatory research tools to help other researchers:

Participatory research checklist

Are you are looking for clear guidance to achieve true and meaningful participation throughout each and every step of your research? Download these checklists developed with the autistic community to prepare and evaluate your approach:

How to make decisions as equal partners

To ensure all participants can contribute equally, there is a paper describing in detail a useful method to aid fair decision making processes:

The five-finger decision making process

Academic guidelines on conducting participatory research

The AASPIRE Inclusive Research Toolkit includes sections on participatory research, accessible human subjects research, neurodiversity and disability justice, and the AASPIRE guidelines, including and beyond the papers below:
The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants
Creating accessible survey instruments for use with autistic adults and people with intellectual disability: lessons learned and recommendations
Guidelines for the Creation of Accessible Consent Materials and Procedures: lessons from research with autistic people and people with intellectual disability.

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