Building Bridges: creating partnerships between autistic and research communities
This project was carried out in response to concerns voiced by autistic adults and family members that they did not feel engaged in research and thought that researchers were not working on issues that were important to them.
The project aimed to increase involvement of the autism community in the lifecycle of research and to develop routes for the autistic community to have meaningful input into the nature and direction of autism research. To achieve this, we ran a series of workshops in November 2015 and August 2016 with 30 autistics adults and parents of autistic children.
The workshops consisted of presentations from academics and autistic adults, discussion groups and interactive activities. We used questionnaires, focus groups and an online poll to gather opinions from the participants.
The project was funded by the Wellcome Trust Institutional Strategic Support Fund.
Overall, participants felt that there was a lack of accessible information relating to research opportunities and research findings and they felt they were unable to influence autism research.
“I just feel really simple things, if we're aiming to build bridges, how can you possibly find out about those sorts of materials because they're only available, all that information is only available to you [researchers…] There is very much that sense that we don't have access to any of this information or any of the resources or decisions. That makes me feel very excluded at times and I think that everyone else is saying similar things”
However, most participants thought that research was relevant to them and it was important for the autism and research communities to work together. Participants argued strongly that research goals should be pursued together as equals, with autistic people allowed to shape ideas.
“From my own point of view, I do feel that research should not simply be undertaken from the perspective of experts who have some kind of vaulted higher position from which they can examine the rest of the world. And I feel that that's an incredibly important reason why I'm participating.”
The group identified practical advice for improving involvement in studies, including better recruitment approaches (e.g. clearer and more accessible information about studies), access considerations and recommendations for running study visits. They also highlighted that involvement in research provides a level of support such as the opportunity to talk about autism and to find out about the latest developments.
“...just conversations around things relating to autism, I find that really interesting, because I don't like to always talk about autism all the time to most of my neurotypical friends, and I don't want to sound like I'm obsessed with it, but I find it really interesting, so it's nice to have those conversations.”
These findings have been used to create guidelines for researchers and have been written into a paper, co-authored by members of the autism community from the workshops.