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    Attitudes of the autism community to early autism research

    Fletcher-Watson, S. and Apicella, F. and Auyeung, B. and Beranova, S. and Bonnet-Brilhault, F. and Canal-Bedia, R. and Charman, T. and Chericoni, N. and Conceição, I. and Davies, Kim and Farroni, T. and Gomot, M. and Jones, Emily J.H. and Kaale, A. and Kapica, K. and Kawa, R. and Kylliäinen, A. and Larsen, K. (2017) Attitudes of the autism community to early autism research. Autism 21 (1), pp. 61-74. ISSN 1362-3613.

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    Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as: use of ‘at-risk’ language; communicating study findings to parents; and the future perspective of enrolled infants when they reach adulthood. The current study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism, and practitioners in health and education settings across eleven European countries. Survey respondents (n=2317) were positively disposed towards early autism research and there was significant overlap in their priorities for the field, and preferred language to describe infant research participants. However there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.


    Item Type: Article
    Keyword(s) / Subject(s): Autism spectrum disorder, development, infancy, public engagement, ethics
    School: Birkbeck Faculties and Schools > Faculty of Science > School of Psychological Sciences
    Research Centres and Institutes: Brain and Cognitive Development, Centre for (CBCD)
    Depositing User: Users 3467 not found.
    Date Deposited: 15 Mar 2016 15:25
    Last Modified: 02 Aug 2023 17:21


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