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Guidelines for conducting research studies with the autism community
Emma Gowen1, Rachel Taylor2, Thomas Bleazard1,2,3
1Division of Neuroscience and Experimental Psychology, School of biological Sciences, Faculty of Biology, Medicine and Health Sciences, The University of Manchester.
Autism Policy & Practice
|April 1, 2020
Summary
Researchers developed guidelines to improve autism research by increasing autistic people's involvement. These practical recommendations foster collaboration and ensure research aligns with community needs and priorities.
Area of Science:
- Neuroscience and Behavioral Science
- Community-Based Participatory Research
Background:
- Growing concern from autism communities regarding research misalignment with autistic people's priorities and needs.
- Autistic individuals report limited influence and desire greater involvement in the research process.
Purpose of the Study:
- To generate practical guidelines for autism researchers to enhance involvement, collaboration, and trust with the autism community.
- To promote transparent and participatory approaches in autism research.
Main Methods:
- Focus groups and interviews with 22 autistic adults and 8 parents of autistic children.
- Workshops conducted in collaboration with Autism@Manchester and Salfordautism.
Main Results:
- Development of practical guidelines for researchers, organized into four sections: pre-study, recruitment, study visit, and post-study considerations.
- Recommendations emphasize effective communication and equal partnerships throughout the research pathway.
Conclusions:
- Implementing these guidelines can reduce community dissatisfaction with research.
- The guidelines aim to improve autism research standards by centering the needs and preferences of autistic individuals and their families.
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