Making the future together: Shaping autism research through meaningful participation

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them

Autistic perspectives on the future of clinical autism research

The Lancet Commission on the Future of Care and Clinical Research in Autism recently published their recommendations for what should be done in the next 5 years to address the current needs of autistic individuals and families. Although the Commission includes many prominent clinicians and researchers from around the world, as well as some autistic advocates and parents of autistic people, there have been widespread expressions of dissatisfaction among autistic people and communities regarding these recommendations. We, the Global Autistic Task Force on Autism Research are a group of autistic professionals and representatives of organizations run by and for autistic people. We are autistic clinicians, therapists, educators and researchers, parents, and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of color, autistic people from the Global South and Asia, autistic women, and autistic people belonging to gender minorities. Despite aiming at bringing together different stakeholders, representation within the Lancet Commission was limited in these respects. We hope to bring more voices to the discourse. We previously wrote an open letter to the Commission to draw attention to our main concerns. In this editorial, we offer a more detailed discussion of the Commission's report, as well as our own recommendations for future directions in autism research and care

Autistic perspectives on the future of clinical autism research

There have been widespread expressions of dissatisfaction among autistic people and communities regarding the recommendations of the Lancet Commission on the future of care and clinical research in autism.1 The authors of this article discussed the Commission’s report and some wider issues related to autism research in general as a committee of autistic people, the Global Autistic Task Force on Autism Research, comprising autistic professionals and representatives of organisations run by and for autistic people, focusing on advocacy, service provision, education and participatory research. The Commission has been addressed in an open letter that drew attention to some of the points also discussed in this article