title: Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
abstract: There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.
authors.affiliation: Centre for Research in Autism and Education (CRAE), Department of Psychology and Human Development, Institute of Education, University of London, London, United Kingdom.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Pellicano
authors.affiliation: Centre for Research in Autism and Education (CRAE), Department of Psychology and Human Development, Institute of Education, University of London, London, United Kingdom; Wellcome Trust, Strategic Planning & Policy Unit, London, United Kingdom.
authors.forename: Adam
authors.initials: A
authors.lastname: Dinsmore
authors.affiliation: Department of Psychology, King's College London, Institute of Psychiatry, London, United Kingdom.
authors.forename: Tony
authors.initials: T
authors.lastname: Charman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001321:Autistic Disorder; D005190:Family; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D012106:Research; D012108:Research Personnel; D012111:Residence Characteristics; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult