Universitaire, militant ou défenseur ? En colère, enchevêtré et émergent : une réflexion critique sur la production de connaissances sur l'autisme

Titre original en anglais : Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production

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Botha, M. (2021). Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production. Frontiers in Psychology, 12, 727542-727542. https://doi.org/10.3389/fpsyg.2021.727542

Date de publication: 28/09/2021 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
1
Auteur·ices de la publication identifié·es comme autistes
1 / 1 (100,0 %)
  1. Monique Botha *

Résumé

La recherche sur l'autisme s'est intéressée aux recherches dirigées par des personnes autistes et aux recherches participatives, mais la question de savoir si ce domaine est accueillant à l'implication des personnes autistes a été peu discutée. Bien que l'accent mis sur les recherches participatives et/ou dirigées par des personnes autistes soit très bienvenu, une conversation plus large devrait également avoir lieu sur la manière dont les personnes autistes sont traitées dans le processus de création des connaissances. À ce titre, je présente une réflexion critique sur mes expériences du milieu universitaire en tant que personne autiste menant des recherches sur l'autisme. Je commence par me demander si je suis universitaire, militant ou défenseur, avant de discuter de mon parcours dans le milieu universitaire et de mon exposition à des récits déshumanisants, objectivants et violents de l'autisme. Je souligne comment la construction de l'objectivité a conduit à ne pas remettre en question la validité de ces récits déshumanisants de l'autisme, qui sont considérés comme « scientifiquement solides » en vertu de leur « objectivité » perçue. En outre, je discute de la manière dont l'idée d'objectivité est utilisée pour marginaliser l'expertise autiste de façons fallacieuses, en particulier lorsque ces connaissances remettent en cause le statu quo. Bien qu'ils prétendent être exempts de valeurs, ces récits déshumanisants de l'autisme incarnent des valeurs sociales et culturelles, sans aucune transparence ni reconnaissance. Je discute ensuite de la manière dont ces récits et théories déshumanisants, enchevêtrés dans les valeurs, se répercutent dans la vie des personnes autistes et deviennent des moyens de nous constituer. Après cela, je discute de la rationalité de la colère que ressentent les personnes autistes lorsqu'elles rencontrent ces récits et, plutôt que d'exhorter les personnes à se distancier de ces émotions, je discute de la valeur du « leaning-in » en tant qu'acte radical de dissidence face à la violence fondée sur la recherche. Je lance ensuite un appel à l'action exhortant toutes les personnes qui écrivent ou parlent de l'autisme à s'engager de manière réflexive dans l'examen de la façon dont leurs valeurs façonnent leur compréhension et leur construction des personnes autistes. Enfin, je conclus en répondant à ma question initiale : j'ai émergé comme défenseur, militant et universitaire. Pour moi, appartenir à la communauté autiste, reconnaître notre marginalisation et reconnaître nos souffrances au sein de la société signifie que l'espoir d'un avenir meilleur et juste a toujours sous-tendu, et sous-tendra toujours, mon travail.

There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as "scientifically-sound" by virtue of their perceived "objectivity." Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories-entangled in values-reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of "leaning-in" as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

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
105
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
12 / 105 (11,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
16 / 331 (4,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 16 / 89 (18,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 11 / 291 (3,8 %).
Occurrences citées rattachées à la base AutiHub
89 / 331 (26,9 %)
Auteurices cité·es distinct·es rattaché·es : 59 / 291 (20,3 %)
Occurrences rattachées, non identifiées comme autistes
73 / 89 (82,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 73 / 331 (22,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 48 / 59 (81,4 %).
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