Aprendizagens do sofrimento de famílias de crianças com transtorno do espectro autista.

Abstract

Learnings from suffering of families of children with Autism Spectrum Disorder (ASD) is the theme of my thesis. The urgences of this research were discussed based on thinkers from the Complexity Paradigm, considering mainly the concept of autopoiesis as an index situated in Cognitive Biology, of Humberto Maturana and Francisco Varela. In this sense, I intended to discuss the complexification process originated by noise, proposed by Henri Atlan, which corresponds to the autopoietic mechanisms of disturbance and invention, comprising assumptions that are connected to organizing vectors such as the becoming, self-organization, invention, the circular process and the complexity. The objective of this research was to investigate the learning process of relatives of children diagnosed with ASD in a way to transform suffering in effective actions towards self-organization and the complexification of self. This study was performed in a quantitative perspective, following the cartography methodology, in which I embraced the “first person” approach, of Francisco Varela, which implies the researcher realizing his/her own experience. The instruments of investigation were set through talking circles and activities performed with six mothers of ASD children, aiming to produce narratives of self, which contributed to map the emergencies of becoming. These were elementary tools for this research in the sense of collaborating to the making of an epistemology from these experiences based on the complexity perspective. Thus, the needs mapped pointed to a concept of cognition as an individual experience, fed back into the collective and inseparable from the process of living in the dynamics of conversations. In this circular process, I understood that the mothers’ learning happened through a path marked by language tangled with emotion, love, and the care about themselves and the others. Therefore, this study reassured me the understanding that studying how the learning of families with children with ASD takes place, regarding the transformation of suffering into effective actions of self-organization and complexification of the self, enables actions and effective autopoietic interactions, promoting other ways of thinking, reconfigurations and self-organizing practices from the suffering. This heralds the perception of life as a search for accomplishments in the sense that human beings are capable of loving and being loved, insofar as they love themselves.