Cuidando de crianças com o transtorno do espectro autista: perpecepções e sentimentos

Abstract

Studies have pointed out that, in families in general, the mother is the person who spends the most time with the child diagnosed with Autism Spectrum Disorder (ASD), in detriment of other social roles, assuming a greater range of care. Such mothers, when primary caregivers, tend to be at higher risk of crisis and parental stress than parents, or even higher than the mothers of children with other developmental disorders. It is important to highlight the importance of a deeper understanding of the issue of maternal feeling in relation to a child with autism, so that effective strategies of reception and coping are performed with the mothers and families of the child diagnosed with ASD. The general objective of this dissertation was to understand the perception and feelings of mothers and professionals who accompany children with ASD. This dissertation was divided into two studies, both empirical. Study 1 aimed to understand the perception and feelings of the mothers of children with ASD and to identify the internal resources and social supports they use in their daily lives. This is a descriptive and exploratory research with a qualitative approach, which was performed with nine mothers of children with ASD, the number of participants being defined by the theoretical saturation criterion for qualitative research. Semistructured interviews were carried out mediated by an image and a triggering question on the subject. The analysis showed the importance of extending the maternal support network to the challenges of the daily care of an autistic child, signaling that, even with the obstacles experienced, mothers managed to minimize the negative impact of the diagnosis through positive feelings regarding their experiences. Study 2 aimed to understand the perception and feelings of professionals who perform actions with children with ASD. Based on the methodology of a collective case study, we interviewed four professionals who worked on a social project for autistic children. The semi-structured interviews were mediated by an image and a triggering question on the subject. The analysis pointed out the importance of teamwork as a support for the actions carried out and a sensitive look not only at the child, but also at the whole family. Both studies point to the need to expand the support network for family members and professionals who work with autistic children, so that they feel welcomed, valued and empowered in their life contexts. The importance of spaces and social projects that aim at this construction is also something to be highlighted with the conclusions of the studies, since such spaces and projects tend to provide a better quality of life for the autistic children, their families and the professionals involved. It is suggested that future research may carry out longitudinal studies with children and mothers assisted by social projects that support and guide the conduct of ASD.