Roadmap to strengthen autistic co-production and co-leadership in autism research
We worked with autistic people and research stakeholders to identify the barriers to meaningful research partnerships and develop a roadmap for change.
What we did
As part of the National Autism Strategy knowledge translation and research foundations work, we used a co-design process to explore how autistic co-production and co-leadership can become a more consistent and sustainable part of autism research. We combined a literature and environmental scan with co-design workshops, interviews and survey validation involving autistic people, researchers, funding bodies, universities and other research stakeholders.
Together, this work informed the development of a roadmap outlining practical actions to strengthen autistic participation, leadership and decision-making across the research system.
What we found
Despite growing commitment to co-production and co-leadership in autism research, autistic people continue to report barriers to leadership, limited influence and experiences of tokenism. Researchers also face funding, institutional and cultural barriers that make meaningful collaboration difficult to achieve.
We found that the barriers and enablers to autistic co-production and co-leadership operate across four areas: funding; knowledge, education and information; culture and systems; and connections and partnerships. The report provides 14 recommendations for universities and research institutions; funding bodies; government; researchers and research teams; Human Research Ethics Committees (HRECs); journals; and community members, families and community organisations.
Why this matters
Research is more relevant, ethical and impactful when autistic people are genuine partners and leaders throughout the research process. Yet co-production is often treated as optional, rather than being embedded and supported across the research system.
These findings highlighted the need for coordinated, system-wide action rather than project-by-project solutions. This roadmap provides practical recommendations to help stakeholders move the sector from commitment to consistent implementation.
Project team
Hayley Clapham, Liv Gatfield and Cheryl Mangan.
