The (in)visible support network: mutual aid, cooperation, and collaboration among parents of children on the autism spectrum

Abstract

The article addresses the issue of informal support networks, mutual cooperation, and collaboration established by parents of children on the autism spectrum. In the face of the increasing prevalence of autism diagnoses – and the accompanying psychological, social, and organizational burdens – parents often experience elevated levels of stress, loneliness, and parental burnout. In response to these challenges, they create spontaneous peer-based networks of mutual assistance, grounded in solidarity, reciprocity, and shared resources. The article explores two main theoretical frameworks for understanding this phenomenon: the concept of self-help/mutual-help groups and J.S. Coleman’s theory of social capital, emphasizing the roles of trust, reciprocity, and community cohesion. Such support may take emotional, informational, and practical forms, and can also lead to collective advocacy, educational initiatives, and integrative activities. The article describes the most salient manifestations of these parental practices, highlighting their potential for fostering a sense of community, mitigating social isolation, and enhancing parental agency. The need for further empirical research is underscored, particularly with regard to the scope and impact of these self-help strategies on the quality of life and psychological well-being of parents of autistic children. The article also draws attention to the complementary role of these informal networks in relation to formal support systems, as well as their potential to reduce the social marginalization of families with a member on the autism spectrum.