Vivências de mães de crianças com transtorno de espectro autista: implicações para a enfermagem

Abstract

Autistic Spectrum Disorder (ASD) is the persistent lack in social communication and social interaction in multiple contexts, including deficits in social mutuality, nonverbal communication behaviors used for social interaction, and ability to develop, maintain, and understand appropriate relationship with other persons around. Present work is a qualitative study with phenomenological approach based on Martin Heidegger's theoreticalphilosophical and methodological framework, carried out in a city placed in Minas Gerais’ Zona da Mata region, with 14 mothers of diagnosed children, who from January to March of 2016 made their statements in meetings mediated by empathy, after the approval of the Ethics Committee of Federal University of Juiz de Fora. From the vague and median comprehension emerged the Units of Meaning: hard to accept the diagnosis and not having the perfect child; The biggest problem is family and society non-acceptance due to lack of information and The coexistence made me learn things that I never imagined to learn, I learned to be human. The elaboration of this thread led to the second methodical moment, the interpretive or hermeneutic understanding. The autistic-mother-been-there starts from the diagnosis facticity, goes through the impropriety on denying or not accepting the disorder and becomes inauthentic, since she ceases of been an individual and becomes the "autistic mother". In everyday care it reveals the talk, the curiosity and the ambiguity. It also uncovers the occupation in dealing with autism, worrying about the child and been-there-with-theothers that becomes deficient. In this moment the anguish emerges. Because is a circular movement, falls again veiling the authenticity achieved as a way of being-there-with the child. The developed research allowed the unveiling of some important meanings pointed out by the philosopher and thinker Martin Heidegger. Relating them to findings of previous research, it is possible to perceive similarities in feelings suffered by mothers of persons with ASD. This research suggests accomplishing new studies with approach directed to nurses and health professionals in order to know their vision about this situation, questions and discussions about how to act and participate side by side with these mothers and families. It is also necessary to rethink public policies to reach this part of population in a more efficient and inclusive way.