What should autism research focus upon? Community views and priorities from the United Kingdom.
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.
Institute of Education, University of London, UK University of Western Australia, Australia l.pellicano@ioe.ac.uk.
Elizabeth
E
Pellicano
Institute of Education, University of London, UK Wellcome Trust, London, UK.
Adam
A
Dinsmore
King's College London, Institute of Psychiatry, UK.
Tony
T
Charman
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001321:Autistic Disorder; D002648:Child; D002675:Child, Preschool; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D012106:Research; D012111:Residence Characteristics; D006113:United Kingdom; D055815:Young Adult
autism community; autism research; decision-making; priority setting