What should autism research focus upon? Community views and priorities from the United Kingdom

Abstract

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.

Keywords: autism community; autism research; decision-making; priority setting.

Figure 1.

Pie chart showing the breakdown of UK autism research grant funding between 2007 and 2011 (see Pellicano et al., 2013, for details; also see Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the IACC, 2012). Diagnosis, symptoms and behaviour included projects on diagnostic and screening tools, early signs and biomarkers, subtypes, symptomatology and epidemiology. Biology, brain and cognition included projects on cognition, sensory and motor function, computational science, co-occurring conditions, longitudinal studies, immune/metabolic/molecular pathways, neural systems and neuropathology. Causes included projects on genetic risk factors, environmental risk factors and epigenetics. Treatments and interventions included behavioural and developmental, complementary and alternative, educational, medical, occupational and technology-based interventions and supports. Services included projects on community inclusion programmes, effective service delivery, family well-being and safety, practitioner training and service utilisation and access. Societal issues included projects on the economics of autism, research policy, social, ethical and legal issues, and biographical, sociological and ethnographical work.

Figure 2.

Participants’ priorities for future autism research in the UK: theme and sub-themes.