« Je ne suis pas seulement un cobaye » : perceptions académiques et communautaires de la recherche participative sur l’autisme

Titre original en anglais : ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research

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Houting, J. d., Higgins, J. M., Isaacs, K., Mahony, J., & Pellicano, E. (2020). ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research. Autism, 25(1), 148-163. https://doi.org/10.1177/1362361320951696

Date de publication: 27/08/2020 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
3 / 5 (60,0 %)
  1. Jacquiline den Houting *
  2. Julianne M. Higgins *
  3. Kathy Isaacs *
  4. Joanne Mahony
  5. Elizabeth Pellicano

Résumé

Malgré les appels en faveur d’un engagement accru de la communauté dans la recherche sur l’autisme, les données probantes publiées suggèrent que la recherche participative sur l’autisme demeure rare. Cette étude a examiné l’ampleur et la nature de l’engagement communautaire dans des projets de recherche australiens commandés par l’Autism CRC. Les données ont été recueillies au moyen d’une enquête en ligne, comprenant des items quantitatifs sur échelle et des réponses qualitatives en texte libre, qui a été remplie par 64 partenaires universitaires et 15 partenaires communautaires. Les résultats quantitatifs ont indiqué que les parties prenantes de la recherche sur l’autisme en Australie soutiennent largement l’engagement communautaire dans la recherche et ont eu des expériences positives de recherche participative. Ces résultats n’ont toutefois pas été entièrement corroborés par les résultats qualitatifs, qui suggéraient que les participants ne comprenaient pas suffisamment la recherche participative et avaient des attitudes susceptibles d’entraver la réalisation d’une recherche participative réussie. Des problèmes systémiques au sein des contextes de recherche étaient également perçus comme entravant l’engagement communautaire dans la recherche. Tant les partenaires universitaires que les partenaires communautaires bénéficieraient d’une meilleure compréhension des approches de recherche participative, associée à des changements pratiques et épistémologiques au niveau systémique, afin de garantir que le futur engagement communautaire dans la recherche sur l’autisme soit respectueux, équitable et bénéfique pour toutes les parties prenantes. Résumé grand public La recherche participative signifie travailler ensemble avec la communauté concernée par la recherche afin de prendre des décisions concernant cette recherche. La recherche participative est courante dans certains domaines, mais elle demeure rare dans la recherche sur l’autisme. Dans cette étude, nous voulions déterminer ce que les chercheurs australiens sur l’autisme et les membres de la communauté pensent de la recherche participative. Nous avons travaillé avec un groupe consultatif autiste afin de concevoir cette étude, de comprendre les résultats et de rédiger cet article. Nous avons demandé à 127 personnes, travaillant toutes sur des recherches du Cooperative Research Centre for Living with Autism, de remplir une enquête en ligne sur la recherche participative. L’enquête comprenait certaines questions auxquelles il fallait répondre sur des échelles d’évaluation, et d’autres pour lesquelles les participants rédigeaient leurs propres réponses. Soixante-dix-neuf personnes, soit 64 chercheurs et 15 membres de la communauté, ont répondu à la plupart ou à la totalité de l’enquête. Les échelles d’évaluation ont montré que la plupart des participants (82 %) soutenaient un engagement communautaire modéré ou étendu dans la recherche, et que la plupart des participants (72 %) pensaient qu’il devrait y avoir davantage d’engagement communautaire dans la recherche sur l’autisme. En général, les participants ont évalué positivement leurs expériences de recherche participative. À partir des réponses écrites des participants, nous avons dégagé quatre idées principales : (1) la recherche participative est importante, mais difficile ; (2) de nombreuses personnes ne comprennent pas pleinement ce qu’est la recherche participative ; (3) les universitaires et les membres de la communauté ne travaillent pas ensemble en tant qu’égaux ; et (4) les systèmes de recherche ne sont pas conçus pour la recherche participative. Nos résultats suggèrent que les chercheurs sur l’autisme et les membres de la communauté souhaitent mener davantage de recherches participatives, mais qu’ils pourraient avoir besoin de formation, de soutien et de financement pour bien mener une recherche participative.

Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders. Lay abstract Participatory research means working together ( engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants’ own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.

Bibliographie citée par cette référence

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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
59
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 59 (16,9 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
23 / 251 (9,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 23 / 107 (21,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 16 / 212 (7,5 %).
Occurrences citées rattachées à la base AutiHub
107 / 251 (42,6 %)
Auteurices cité·es distinct·es rattaché·es : 82 / 212 (38,7 %)
Occurrences rattachées, non identifiées comme autistes
84 / 107 (78,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 84 / 251 (33,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 66 / 82 (80,5 %).
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