Mães de crianças autistas usuárias dos capsi no Cariri cearense: o que esperar da sala de espera, quando se está esperando?

Abstract

Autism Spectrum Disorder is characterized by alterations in neurodevelopmental functions related to communication, social interactions and behavior. The degree of severity is measured based on the support the individual needs and, in the most serious cases, the person requires care provided by a multidisciplinary team. Caring for an autistic child generally falls to mothers and requires exclusive dedication. Although there is a need for a support network to share tasks, the reality is very different. The CAPSi waiting rooms are full of mothers, accompanying their children to the various consultations and therapies and the reports point to a journey on a solo flight. The objective of this research was to understand the reality of mothers of autistic children in the waiting rooms of CAPSi in Juazeiro do Norte and Barbalha, in Cariri Ceará. This is a descriptive study, with a qualitative approach, with two focus groups, whose participants were selected intentionally. To collect data, conversation circles were held with mothers of autistic children, in both mental health facilities. The conversation circles included guiding questions that addressed topics such as daily dealings with the child, moments of self-care and/or being cared for by someone and what is expected of the waiting room and of themselves while waiting for their children. The data were processed using the discourse analysis method and the statements that were most repeated led to the creation of categories: participation, often alone, in the care of autistic children; the need for self-care; the lack of being cared for by others; the (self) demands on child care and, finally, the waiting room as a place of care. Mothers complain about little time to take care of themselves, they would like to have psychological care and suggest that this care can be reconciled with the time when the children are undergoing their own therapies. It was found that the waiting room is seen as a space with functions other than waiting, as it is where these women (re)get to know each other, exchange experiences and form a peculiar support network between them. There is also the expectation that this environment will offer relaxation and leisure activities to be enjoyed by mothers while they wait for their children.