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Making the future together: Shaping autism research through meaningful participation
Sue Fletcher-Watson1, Jon Adams2, Kabie Brook3
11 The University of Edinburgh, UK.
Autism : the International Journal of Research and Practice
|August 11, 2018
Summary
Participatory autism research, co-produced by autistic and non-autistic individuals, offers a framework for impactful collaboration. This approach aims to improve research relevance and outcomes for autistic people.
Area of Science:
- Autism Research
- Community-Based Participatory Research
Background:
- Autism research faces challenges with implementation and community satisfaction.
- Participatory methods offer a solution by involving communities in research goals.
Purpose of the Study:
- To develop a framework for participatory autism research.
- To identify key elements for building a community of practice in this field.
Main Methods:
- A UK seminar series co-produced by autistic and non-autistic individuals with diverse expertise.
- Identification of five core topics for collaborative research.
Main Results:
- Five key topics emerged: Respect, Authenticity, Assumptions, Infrastructure, and Empathy.
- Examples were provided to inspire new participatory practices.
Conclusions:
- There is a strong need for enhanced participatory research skills within the autism research community.
- Increased autistic leadership and partnership in research are crucial for improved outcomes.
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