Researchers call for changes to how autism research is conducted
A new report outlines recommendations for building bridges between the autistic community and the research community.
A shift of research culture is required to ease perceived tensions between the autistic community and the biomedical research community, according to a new report by authors collaborating on AIMS-2-TRIALS, one of the world’s largest autism research programmes that aims to improve outcomes for autistic people.
Emily Jones, Professor of Translational Neurodevelopment at Birkbeck and contributing author to the report, said: “There is controversy surrounding contemporary autism research, with the autism community citing concern about how autism research is conducted.
“The perceived gap between the perspectives of the autistic community and the research community raises the risk of the research not being useful to the community it aims to help, and the halting of scientific progress. We are at a critical juncture, which led to the development of this report.”
Sarah Douglas, autistic research advisor, said “Being a co-author and equal creative partner in this Bridge-Building paper writing team has been a great experience of genuinely collaborative co-production. It has been a space in which I have felt heard and was able to hear others as we worked together to explore and suggest a better future for autism research that genuinely makes life better for autistic people and their families."
The report, Bridge-building between communities: Imagining the future of biomedical autism research, outlines a series of recommendations for researchers to improve engagement and trust among autistic communities. The report strongly recommends researchers work more closely with autistic people who have a diverse range of autistic characteristics and support needs. Researchers should also include autistic people’s perspectives in the development of the research design and protocol, and continue to consult with them throughout the research process. To achieve these recommendations, the authors call for support in training researchers, alongside dedicated funding and resources.
Authors of the report include experts from Birkbeck, King’s College London, University of Cambridge, Brighton and Sussex Medical School, University of Manchester, South London and Maudsley NHS Foundation Trust, Université Paris Cité, Trinity College Dublin, University of Toronto and the Community Health Centre Domzale, Slovenia. This research received funding from the Innovative Medicines Initiative 2 Joint Undertaking.