Participatory Autism Research: A Pilot Study Exploring Autistic People’s Experiences
This study aims to learn about the experiences and perspectives of autistic people of participatory autism research, an approach to research that involves autistic people as more than subjects. This may help identify new or better ways to engage with autistic people in research.
If you would like to take part or have questions, please contact Jackie Ryan at J.G.Ryan@sms.ed.ac.uk
Why are we doing this project?
We want to understand the experiences of autistic people in participatory autism research which could lead to new or better ways for researchers to engage with autistic people in research.
We hope to reduce researcher reluctance to engage with the autistic community.
Who is involved?
Jackie Ryan is an autistic PhD student from the University of Alberta in Edmonton, Canada, whose research interest is self-determination for autistic people and enhancing self-determination through participatory autism research. She is also mum to a young adult son on the spectrum. Collaborative research can ensure that the research is relevant to the autistic community and improves quality of life.
Kabie Brook is an autistic master’s student who is interested in professionals’ views of autistic parenting. They are the chairperson of ARGH.
Jackie Ryan
Email: J.G.Ryan@sms.ed.ac.uk
Kabie Brook
Sue Fletcher-Watson
The online focus group discussion board will be open for one week from June 28 to July 4, 2020.
You can answer the questions and respond to other people’s answers at anytime during the week. The total amount of time this should take you is between 1 and 2 hours spread over the week.
Jackie and Kabie will be on the discussion board throughout the week to moderate the discussion.
These are the focus group questions:
- What do you think about participatory autism research?
- What are the barriers to participatory autism research?
- What has worked well in the past?
- How could participatory autism research be supported in the future?
- What do you wish autism researchers knew about being autistic?
- How would you like to be involved in autism research?
For more information email Jackie Ryan: J.G.Ryan@sms.ed.ac.uk.
You can also email Sue: Sue.Fletcher-Watson@ed.ac.uk
This is where we will share the results from the focus group.