Building Bridges between the Autism and Research Communities: Opinions from People with a Lived Experience of Autism

Background: Recent work has highlighted that there is a disconnect between the autistic and research communities (Pellicano, Dinsmore & Charman, 2014ab). There is a concern that this is harming trust, leading to the reduced involvement of autistic people in research and skewing research priorities. It has also been suggested that research is failing to impact the everyday lives of the majority of autistic people.

Objectives: In the present study, we sought the opinions and experiences of the autism community about research in an attempt to improve mutual understanding and identify how the academic and autism communities could work together better.

Methods: The project involved a collaboration between Autism@Manchester, an interdisciplinary network including academics from several research fields and Salfordautism, an autism support organisation that is led and run by autistic people. We organised 3 x 2 hour workshops with autistic adults and the parents of autistic children (n = 30). The workshops included (1) introducing the group to different types of research (2) focus groups exploring experiences of research, barriers to research participation and possible solutions (3) possibilities for future partnerships. Here we outline the focus group results, analysed using thematic network analysis.

Results: Three overarching themes were identified in analysis of the focus group discussions. The first theme explored motivations for taking part in research. Participants highlighted a desire to learn about themselves and improve society’s understanding of autism. Research participation was highlighted as a valuable form of post-diagnostic support. However, participants expressed a desire to shape research goals, moving beyond passive participation. The second theme explored ways of equalising power relations between participants and researchers. Participants criticised a failure to share research outcomes quickly and in accessible forms. Forums for discussing research findings were highlighted as crucial for building bridges. In the third theme, practical advice for involving the autistic community in research was considered. Participants expressed a broad desire for more participation and suggested linking research networks to reduce the work in finding out about opportunities to participate. Ways to improve accessibility and the dissemination of research information were also addressed. Several ongoing challenges to greater involvement of the autism community in research were also identified including lack of institutional support and the different ways in which autistic and non-autistic people express themselves.

Conclusions: There was a strong positive view about research with participants understanding and supporting its value. Our focus group analysis showed that engagement was necessary throughout the research process. From study design to implementation, dissemination and discussions moving forward, the autism community suggested opportunities for facilitating participation and increasing partnership. These findings have been written into guidelines aimed to support autism researchers to build stronger partnerships with the autism community for successful research in future.