O processo de luto e as transformações cotidianas vivenciadas pelas famílias após a descoberta do diagnóstico de transtorno do espectro autista (TEA)

Abstract

The literature indicates that families of children with Autism Spectrum Disorder (ASD) experience a process of symbolic mourning and significant daily transformations after discovering the diagnosis, going through ruptures similar to concrete mourning. However, this topic has been little investigated, despite the popularization of the subject of autism. Thus, the objective of the present study was to understand the process of mourning and the daily transformations experienced by parents/guardians of children with ASD, after discovering the diagnosis. In addition, we intended to identify what it was like for the families to receive this diagnosis; what changes occurred in their daily lives after the discovery; and what factors may have contributed to or hindered the experience of this process. To this end, this is an exploratory, descriptive study with a qualitative approach, carried out with parents/guardians of children diagnosed with ASD, based on snowball sampling. The data were collected through an online interview, conducted on the Google Meet online platform, and analyzed using categorical analysis. The results showed that there were significant changes in the families' daily lives, directly impacting interpersonal relationships, leisure activities, support networks, among others. Furthermore, it is noted that the grieving process is not linear and is unique to each family, given that many are still experiencing this grief and others say they do not feel directly affected. It is hoped that this study can contribute to a better understanding of the reality experienced by parents/guardians of children with ASD in order to favor the construction of strategies and policies that aim to create and expand the support network and informational support for these families when they discover the diagnosis.