Coélaboration d'une demande de financement pour la recherche sur l'autisme afin de faciliter une recherche éthique et participative : le projet Autism from Menstruation to Menopause

Titre original en anglais : Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project

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Grant, A., Williams, K., Henry, K., Holloway, W., Nicolaidis, C., Kara, H., & Brown, A. (2024). Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project. In The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies (pp. 61-79). Springer Nature Switzerland. https://doi.org/10.1007/978-3-031-66127-3_4

Date de publication: 01/01/2024 Ajout dans AutiHub: 05/07/2026 Type: Chapitre de livre Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
3 / 7 (42,9 %)
  1. Aimee Grant *
  2. Kathryn Williams *
  3. Karen Henry
  4. Willow Holloway *
  1. Christina Nicolaidis
  2. Helen Kara
  3. Amy Brown

Résumé

Résumé Dans le domaine de la recherche sur l'autisme, de nombreuses études ne parviennent pas à impliquer de manière significative les personnes autistes. Dans ce chapitre, nous rendons compte de la coélaboration d'une demande de financement retenue, dans laquelle nous avons spécifiquement cherché à impliquer des personnes autistes, avec et sans expérience professionnelle pertinente, en tant que partenaires dès le départ et tout au long de la recherche. Cela comprend la manière dont la consultation en ligne d'Aimee auprès de personnes autistes ayant été enceintes a entraîné un changement complet des limites de l'étude, qui est passée de la prise en compte de la maternité uniquement à la santé reproductive tout au long de la vie. Ensuite, nous détaillons les discussions approfondies avec des leaders de la communauté autiste (Kathryn et Willow) et une sage-femme autiste (Karen), qui ont façonné la gouvernance et la conception de la recherche de l'étude avant la soumission. À la suite de cela, nous présentons l'approche de l'étude consistant à utiliser des méthodes de recherche créatives de manière adaptée individuellement, ainsi que la manière dont il s'agit d'une stratégie appropriée et éthique lorsqu'on travaille avec un groupe hétérogène ayant des besoins de communication différents et des préférences quant à la manière dont ses membres souhaitent participer à la recherche. Enfin, nous identifions des facilitateurs susceptibles de permettre aux chercheurs sur l'autisme de coélaborer des demandes de financement pour une recherche éthique et participative. Nous concluons que les approches participatives qui reconnaissent les forces des personnes autistes et placent la communauté autiste au centre sont les plus susceptibles de permettre à la recherche de bénéficier aux personnes autistes.

Abstract Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset and throughout the research. This includes how Aimee’s online consultation with Autistic people who had been pregnant resulted in a complete shift in the study’s boundaries from considering maternity only, to reproductive health across the life course. Next, we detail the in-depth discussions with Autistic community leaders (Kathryn and Willow) and an Autistic midwife (Karen) that shaped the study’s governance and research design prior to submission. Following this, we report the study’s approach to using creative research methods in an individually tailored way, and how this is an appropriate and ethical strategy when working with a heterogeneous group with differing communication needs and preferences for how they would like to take part in research. Finally, we then identify facilitators that may enable Autism researchers to co-develop ethical and participatory research funding applications. We conclude that participatory approaches which acknowledge Autistic strengths and centre the Autistic community have the best likelihood of the research benefitting Autistic people.

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
69
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
27 / 69 (39,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
54 / 270 (20,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 54 / 150 (36,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 20 / 191 (10,5 %).
Occurrences citées rattachées à la base AutiHub
150 / 270 (55,6 %)
Auteurices cité·es distinct·es rattaché·es : 90 / 191 (47,1 %)
Occurrences rattachées, non identifiées comme autistes
96 / 150 (64,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 96 / 270 (35,6 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 70 / 90 (77,8 %).
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