What is it?
Participatory research is an approach to conducting scientific research with direct involvement of those whom it concerns. For example, in autism participatory research scientists team up with adults with autism, parents of autistic children, clinicians, and other stakeholders and members of autism community.
Such collaborations can take many forms and different members can be involved to different degrees. What is important is that the conceptualisation of the research is done with the direct input form the autism community, who inform the researchers about what is important from their perspective to investigate, how to make research autism-friendly, and how to communicate the findings back to the community.
Participatory research in Catalonia/Spain
I am very interested in creating a local (Barcelona/Catalonia/Spain) network of adults with autism, parents of children with autism, and other members of autism community as well as autism researchers with the aim to created a local base for participatory research.
Do you know of any existing groups? Are you interested in creating an autism participatory research group?
Resources to learn more about autism participatory research
Publications in English (selected, there are many more!):
- Keating, 2021: Participatory Autism Research: How Consultation Benefits Everyone
- Pickard et al., 2021: Participatory autism research: Early career and established researchers’ views and experiences
- Greenstein, 2014: Theorising Autism Project – Engaging Autistic People in the Research Process
- Fletcher-Watson, 2018: Making the future together: Shaping autism research through meaningful participation
- Stahmer et al., 2017: Toward a more collaborative research culture: Extending translational science from research to community and back again
- den Houting, 2018: Neurodiversity: An insider’s perspective
- Botha, 2021: Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production
- Vaughn & Jacquez, 2020: Participatory Research Methods – Choice Points in the Research Process
- Francés García et al., 2015: La investigación participativa: métodos y técnicas
Examples of autism participatory research groups and organisations: