“Amor que dói”: a experiência de sentido (perejivanie) de mães de crianças autistas à luz da teoria histórico-cultural

Abstract

The first studies on autism were marked by the blaming of mothers. Although research has advanced and displaced mothers from this position of responsibility, care for the child’s needs continues to be primarily assigned to women, generating relevant implications for the field of mental health. Rooted in Historical-Cultural Theory, which understands the human being based on their material, historical, and dialectical reality—mediated by the other, who provides affections, emotions, language, and consciousness of self and of the world—this research is based on the contributions of Vygotsky, one of the main representatives of this theoretical approach. The author developed the concept of perejivanie (lived experience) as a unit of analysis of the subject, which describes the dynamics between the singularity of meaning attribution to life events, the relation with the environment, and psychic constitution. In light of this theoretical framework, we sought to understand the perejivanie (lived experience) of two mothers, Mônica and Rachel, whose children were diagnosed with Autism Spectrum Disorder. This is a qualitative and exploratory study that used semi-structured interviews as a data collection method. Data analysis followed the proposal for the formation and interpretation of Meaning Cores. Three cores were identified: motherhood as a meaning of life; the woman beyond being a mother; and the mother–child relationship—love and fear in an exclusionary society. The results indicate that the participants are often reduced to a single identity as “atypical mothers,” which may limit their ability to see themselves as women beyond motherhood and their children’s diagnosis. This situation does not arise solely from the diagnosis but, above all, from the broader process of social exclusion that affects both the children and their mothers.