"Quem pariu Mateus que o balance?": um estudo sobre sobre as experiências do cuidado nas maternagens de mães negras de crianças com transtorno do espectro do autismo

Abstract

This master's dissertation aimed to investigate the forms of mothering of black women with children diagnosed with Autism Spectrum Disorder (ASD), focusing on the perspective of care. Through a qualitative investigation, we sought to understand how black women, mothers of children with ASD, experience the care of their children, as well as how they perceive the offer of care in the field of Public Policies. A survey of ethnographic inspiration was carried out in the waiting room of the Parents and Friends Association of the Exceptionals (APAE), upon prior contact and consent with the institution. From this contact, the path of some of these mothers in search of treatmentin the institution, living in a neighboring municipality was accompanied by the researcher. Then, four of them were invited to participate in the study, through interviews. These interviews were conducted based on a semidirected script, with an average duration of fifty minutes. The analysis of the data found was based on the concept of intersectionality and content analysis of the interviews. Eight categories of care were found, namely: surveillance, satisfaction of basic needs, monitoring andtransportation, education, responsibility, support, assistance and mediation. The analysis of the materials showed that mothers are the main caregivers of their children, being responsible for the care in all the categories raised. There are also some findings such as familialism and intergenerational character of care, instead of public policies such as assisted housing, financial aid for, vulnerable families and absence of care for those who care and, more, the maternal protagonism in public policies of income transfer that overload women from the point of view of their responsibility for health monitoring andschool attendance, for example. Other important data pointed to a permanent concern about the future of children, especially when they grow up, as well as a permanent need for surveillance and the search for the offer of care that can improve social skills, often overlooked by parents. On the other hand, there was also an ability to recognize and value in children other ways of existing and the willingness to follow and learn from them, in line with the values of the current that defends human neurodiversity.