« Quel programme ? Qui sait le mieux ? Quelle voix ? » Co-créer une feuille de route de recherche technologique avec des parties prenantes de l’autisme

Titre original en anglais : ‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

Parsons, S., Yuill, N., Good, J., & Brosnan, M. (2019). ‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders. Disability & Society, 35(2), 201-234. https://doi.org/10.1080/09687599.2019.1624152

Date de publication: 19/06/2019 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais

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Résumé

Les technologies jouent des rôles essentiels dans l’apprentissage et la participation des personnes autistes, et pourtant elles ont principalement été conceptualisées selon un modèle médical du handicap. Dans cette revue des parties prenantes, les commentaires de 240 participants issus d’une série de séminaires de deux ans consacrée à l’autisme et à la technologie ont été analysés afin de co-construire une compréhension de la manière dont la recherche pourrait se développer de façon plus inclusive. Notre analyse socioculturelle montre que les parties prenantes étaient très positives quant aux rôles que les technologies peuvent jouer dans de nombreux domaines de la vie, mais que ces technologies doivent être développées et évaluées en fonction des besoins et des préférences des personnes autistes et de leurs familles. Nous proposons un cadre social commun inclusif pour la recherche, fondé sur les thèmes centraux de l’inclusion sociale, des perspectives, ainsi que de la participation et de l’agentivité. Un tel cadre exige que le domaine reconnaisse que certaines pratiques actuelles sont excluantes et qu’un engagement en faveur de l’action est nécessaire afin d’apporter des changements positifs.

Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

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