National Autism Project – Funders Forum

Our meeting for funders of autism research was held on 25th October. We had extended invitations to a broad range of funding agencies, charitable trusts and foundations, whether they had a track record of funding autism research or not, in the hope that they might become interested in contributing to this grossly underfunded area. This was not an entirely successful gambit, but we were pleased to welcome representatives from nine other organisations: the Association of Medical Royal Colleges, the Autism Alliance, Autistica, Caudwell Children, the Medical Research Council, MQ, the National Autistic Society, the Wellcome Trust and Young Epilepsy. The meeting was chaired by Elizabeth Vallance (chair of the NAP Strategy Board) who welcomed everyone and explained why we had convened the meeting and what we hoped to get from the discussion. Ian Ragan (Director of NAP) presented an overview of the project and its policy and research recommendations; James Cusack (Research Director of Autistica) described the charity’s priorities and its new research network, Discover ; Professor Emily Simonoff (Institute of Psychiatry) gave an overview of strengths and weaknesses in UK autism research; and finally, Claire Fitzgerald (Autism Spectrum Connections Cymru) gave an autistic person’s perspective of autism research.

The other participants were invited to present brief descriptions of their organisations, and speak about how they decide on priorities for research funding. These talks set the scene for a lively discussion. There was much emphasis on the large gaps in information about autism and autistic people. Some of these, such as the lack of precise numbers on prevalence or the demand for social services, are not so much topics for research as for the need to establish better information gathering systems. Such information could itself become the subject of research into, for example, how genetic and other data could be used to predict life trajectories for autistic people and to select the most appropriate educational or other interventions to maximise their quality of life. The need for co-production in any such activity was repeatedly stressed. Finding the right balance between basic research on the biological basis of autism and research on educational or social issues is not easy, especially when major funders favour the responsive mode i.e. they prefer to fund the best quality applications rather than allocate funding to specific areas. Much of the social research examined in the NAP report “The Autism Dividend” fell short of the highest standards, and ideas were put forward for how to remedy this so that even responsive mode funding could redress the balance towards topics of immediate relevance to the needs of the autistic community. Autistica’s approach is to encourage better quality applications in these needed areas while funders might consider pump priming to encourage more applications. However, we should not see autism research as a zero sum game in which balance is achieved by robbing Peter to pay Paul. There is a crying need to increase research funding overall as we and many others have highlighted. The issue is therefore to raise awareness at the highest level so that autism research is awarded the same level of priority as e.g. cancer and dementia research.

Ian Ragan
October 2017

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