Sur quoi la recherche sur l’autisme devrait-elle se concentrer ? Points de vue et priorités de la communauté au Royaume-Uni

Titre original en anglais : What should autism research focus upon? Community views and priorities from the United Kingdom

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Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756-770. https://doi.org/10.1177/1362361314529627

Date de publication: 30/04/2014 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
0 / 3 (0,0 %)
  1. Elizabeth Pellicano
  2. Adam Dinsmore
  3. Tony Charman

Résumé

L’augmentation de la prévalence mesurée de l’autisme s’est accompagnée de nombreuses nouvelles recherches et de nouveaux investissements dans la recherche à l’échelle internationale. Cette étude visait à établir si la répartition actuelle du financement de la recherche sur l’autisme au Royaume-Uni correspond aux préoccupations de la communauté de l’autisme. Des entretiens et des groupes de discussion ont été menés avec des adultes autistes, des membres de la famille, des praticiens et des chercheurs afin d’identifier leurs priorités en matière de recherche. Nous avons également recueilli les opinions d’un grand nombre de parties prenantes au moyen d’une enquête en ligne. Il existait un écart manifeste entre la répartition du financement de la recherche sur l’autisme au Royaume-Uni et les priorités exprimées par la majorité des participants. Un consensus général s’est dégagé selon lequel les priorités futures de la recherche sur l’autisme devraient porter sur les domaines qui font une différence dans la vie quotidienne des personnes. Une plus grande implication de la communauté de l’autisme est nécessaire, tant dans l’établissement des priorités que dans la recherche plus largement, afin de garantir que les ressources parviennent là où elles sont le plus nécessaires et peuvent avoir le plus grand 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.

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