About Participatory Research with Autistic People
❓What is Participation |
❓What is Coproduction |
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❝ Participatory research is a research to action approach that emphasizes direct engagement of local priorities and perspectives❞— Vaughn and Jacquez, 2020 Participatory research involves working with autistic people, rather than just studying them. It aims to share power more equally in the research process, either by including people as part of the research team (as we did in this project), or by finding creative ways to involve participants more fully, such as using photovoice. |
❝ Coproduction is based on the sharing of information and shared decision making between the service users and providers❞— Realpe & Wallace, 2010 |
❓Why is it important to promote participatory approaches with the autistic community in research
📖 Historical background to participation in research for autistic people
Historically, disciplines such as medicine and psychiatry have often seen autistic people as a "problem to be fixed" through treatment or intervention. This deficit focused way of thinking made it seem like autistic people could not take part equally in research or service development.
For a long time, autism research was led by non-autistic people, which caused a gap between what research focused on and what really matters to autistic individuals.
A lack of reasonable adjustments are barriers for full inclusion for autistic people. In addition to this, researchers were usually seen as the experts, while autistic participants were treated as subjects, not equal partners.
In recent years there has been a shift in thinking with some excellent examples of research projects which have meaningfully engaged with autistic people.
For more information on the historical background to participation of autistic people, please see a video by one of the Participatory Group members, Laura, who is studying for a PhD in the area;
What are the benefits of taking a participatory approach in research?
By doing with rather than to, participatory research with the autistic community has numerous benefits:
| 📌 | Helps shape research that reflects the real priorities of autistic people |
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| 🌍 | Results that can be applied in real world settings to ensure inclusive, effective and efficient support for autistic people |
| 📝 | Ensures that information sheets/consent forms/research questions/methods are accessible |
| 🧠 | Challenges stereotypes and avoids bias |
| 🌱 | Clear benefits for participants and the wider community such as empowerment and increased confidence, increased skills, training and employability |
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Recruitment of participants can be effectively targeted at community networks, potentially boosting participant numbers |