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"Where Do We Go from Here?" Identifying the Top 10 Priorities to Prevent Suicide in Partnership with Autistic People.

Panel Presentation
Friday, May 3, 2019: 3:55 PM
Room: 518 (Palais des congres de Montreal)
J. Adams, Flow Observatorium, Portsmouth, United Kingdom
Background: Traditionally, priorities for future research were not decided by those affected by research, which resulted in a lack of research relevant to the day to day lives of autistic people. To address this, partnerships between autistic people and their allies are being developed, to ensure that autistic people have a strong voice in the direction of future research. One example of this new form of partnership, is INSAR’s 2019 policy brief, which aims to identify the top 10 research and policy priorities to prevent suicide in partnership with autistic people and their allies.

Objectives: To provide a reflection, as an autistic person with lived experience, on the development of participatory research, the process of the INSAR policy brief, and the top 10 priorities identified in partnership with autistic people.

Methods: First, a summit, with equal representation of autistic, researcher, charity and service provider perspectives, discussed and identified a range of research and policy priorities to prevent suicide in autism. Second, an online survey, with equal weighted representation of autistic, researcher, charity, service provider and policy maker perspectives, prioritised and refined this longer list of priorities for discussion at a 2-day meeting. Third, the INSAR policy brief meeting brought together equal representation of these groups to identify the top 10 research and policy priorities to prevent suicide in autistic people.

Results: The top 10 priorities for future research and policy will be identified and discussed at the INSAR policy brief meeting, on the 4th and 5th April 2019, prior to presentation in this panel at the INSAR 2019 meeting. I shall reflect on the overall process and findings, as an autistic person with lived experience of the issues at hand.

Conclusions: Research which positively affects the lives of autistic people can only be achieved in close partnership between autistic people and their allies. It is important that we learn from examples of participatory working, such as this INSAR policy brief, to ensure that autistic people have a strong voice in the direction of future international research and public policy. This will help ensure that autism research and policy initiatives are useful to autistic people.