Learning About Research: A course for autistic people
This course was intended to educate autistic people who are not researchers about what research is like so that they can be:
- Informed Consumers of research. This means having a better understanding of research that is reported in the media, academic journals, and elsewhere, so people can decide whether the research is important and relevant to them.
- Empowered Participants in research. This means understanding their rights as a participant in a research study, and the responsibilities of the researchers conducting the study.
- Effective Collaborators in research. This means having confidence, knowledge, and skills to work with researchers as an equal and empowered partner.
The course was not intended to prepare people for postgraduate study, or a research career. You can download an outline of the course timetable here.
This course is now completed.
We wanted autistic community members to:
- have the skills to be able to judge if research is relevant for them.
- know their rights as research participants.
- be able to feel confident collaborating in research.
We want researchers to be more competent in collaborating with autistic people, too. We have chosen to start with autistic people. See Sue’s twitter thread for more information here.
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.
Our trainers included:
Training took place at the University of Edinburgh, Kennedy Tower, Morningside Terrace, EH10 5HF.
Kennedy Tower is accessible at the front door and is equipped with an elevator. Here is a link to AccessAble for the Kennedy Tower.
Here is the timetable for the three days.
Here are the PowerPoint presentations as used during the course, mainly for people who attended the course. Early in 2020 we will repackage the presentations in a more user-friendly way for people who want to run the course themselves.
Recruitment and Timelines – see above
Data Management – see above
Ideas, Funding and Research Questions – see above
Research Process – see above
Next Steps – see above
We received a total of 55 responses: 19 identified as autistic and a researcher; 9 identified as autistic; and 27 identified as a researcher but not autistic.
With very few exceptions, our proposed training topics were found to be important or very important to all respondents. There were many suggestions of other topics to be included, some of which were included to create a more robust training course. Some could not be included due to a lack of time within the course.
We also asked about preferred delivery methods. As the course was being designed for autistic people, we especially considered the responses of autistic people. As a result, the delivered course utilized lecture, discussion, case study, individual activities, small group activities, and panel presentations
The project was to create a “nuts and bolts of research” training course for autistic people who wanted to participate in research as more than a participant. We had a short time period to achieve this goal and we knew that it would not be perfect, neither the training, nor the process to create the training. The project is now complete and this blog is about the process and results.
We started by looking at the related literature and connecting with researchers who have developed/delivered similar training. This gave us a broad overview of training topics and what other people thought was important to include. We then developed a draft outline agenda organized by the three themes of Informed Consumer, Empowered Participant, and Effective Collaborator. Our next step was to conduct a survey of autistic people and autism researchers (some respondents were both autistic and autism researchers) to further refine our topics and agenda. The results of the survey can be found here. From the survey results, we created a second draft agenda. This was sent to several autistic researchers for review and a final agenda was created.
Our next step was to identify and invite faculty for each session. We invited several autistic researchers and community members to be faculty and were pleased to have most invitations accepted. We also asked for volunteer faculty from the DART lab team and had four volunteers. This meant that we had a variety of faculty each day of the training and a variety of delivery formats. Faculty members were responsible to create their own content. Sue and I were available to assist.
Finally, our training days arrived. The first day was about becoming and Informed Consumer of research, the second day was about becoming an Empowered Participant in research, and the final day was about being an Effective Collaborator in research. Each day had six attendees; four people attended all three days and the other two participants varied each day. You can find the slides from all days here.
Evaluations of the course were very positive. We did a separate evaluation each day. The first day was very content heavy and some people expressed a bit of trouble absorbing all the new information. The second day was a bit more interactive which was well received in our small group although there was still a lot of information. Our final day was also well received, although it was fast paced. In general, it was felt that having the training a bit more spread out would be beneficial and with shorter sessions.