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Abstract

In France, the participation of families, then formed into associations, was initially militant, in response to the lack of listening to their voices, to accusations from the medical profession and to the invisibility of autism. They emerged in the wake of generalist associations fighting for the inclusion of people with disabilities. Throughout the four decades, they worked to recognize the specificity of autism and the nodal role of families, victims of medical and institutional violence. They thus moved to a structured militant participation that largely contributed to the construction of a public policy on autism and the recognition of the expertise of families. The more institutional participation within the organizations created following their actions made it possible to establish a national strategy in France that today addresses neurodevelopmental disorders more globally by including autism.