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Christelle Durand-Larrieux1, Claire Geindre-Bombrun2
1Association Le Verger de l'Altérité, Saint-Fraigne, France. Doctorante en co-tutelle, EA 7505, Éducation, Éthique, Santé, université de Tours, Tours, France ; Unité de recherche Adaptation, Résilience et Changement, université de Liège, Liège, Belgique.
Abstract:
Autism self-help groups (SHGs) are designed as spaces of empowerment that promote inclusion, citizenship, and, by extension, the mental health of people with autism. The opportunity for self-management by the people concerned opens up strong prospects for (re)building their identity, enabling them to develop multiple skills, assert their autonomy, and become involved in various peer support, social participation, and creative initiatives. However, in practice, self-managed SHGs for autism come up against several obstacles, including a lack of specific support, limited institutional recognition, and the absence of qualitative evaluation of the effects on individual and collective trajectories. Autistic coordinators, who are often in precarious situations, have to take on a host of responsibilities without benefiting from the pooled resources available to traditional medico-social institutions. This reality raises questions about the ability of self-managed SHGs for autism to become genuine, sustainable drivers of public mental health. Beyond these observations, this article proposes to reflect on the role that these SHGs could play as places for health promotion and participatory research in the field of neurodiversity, as part of an approach that respects autistic self-normativity and the principle of health democracy: “nothing for us without us.”.