Who benefits from autism research? And to what extent is it participatory and/or emancipatory?: A brief follow-up to Pellicano, Dinsmore and Charman (2014)

Abstract

It was pointed out in a survey of the autism community in the UK that, despite the welcome increase in the amount of research on autism, and the amount of funding provided for autism research, ‘there was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants’ in the survey (PDC study; Pellicano, Dinsmore and Charman, 2014, p. 756). More recently, in an editorial in Autism, Liz Pellicano and various other colleagues, announced a new era for autism research following the recommendation of the US Government’s Interagency Autism Coordinating Committee (IACC) that ‘autism-related research funding in the United States should increase further still, doubling by 2020’. Pellicano et al. (2018) pointed out that the IACC called for more research that directly affects the lived experiences of autistic people. Although the IACC call was not for research in areas prioritised by the autism community, if the call is heard and acted upon there should be a greater focus on what is important to the community. There is no US equivalent of the PDC study, nor a UK equivalent of the US government body’s call for more research of direct benefit to autistic people.