What should autism research focus upon? Community views and priorities from the United Kingdom
The last few decades have witnessed a dramatic increase in the recorded prevalence of autism. The significant rise in recorded prevalence means that the need for a better understanding of autism and for evidence-based practice has never been greater. In 2010 alone, federal and private foundation funding for autism research in the US exceeded US$400 million. The expressed hope is that the surge in investment in autism research might lead to translational benefits that will, in time, enhance the life chances of autistic1 people and their families. The aim of this study was to ascertain the UK autism community’s views and priorities for autism research. The study used a combination of qualitative and quantitative methods with four main groups of stakeholders, including autistic adults, their family members, practitioners and researchers. The results suggest that there is a large discrepancy between the research priorities identified by participants and the current UK research portfolio. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.
The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. 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. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.
Special Issue Article:
Elizabeth Pellicano, Adam Dinsmore, and Tony Charman
What should autism research focus upon? Community views and priorities from the United Kingdom Autism 1362361314529627, first published on April 30, 2014 doi:10.1177/1362361314529627