Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo

Abstract

This master's dissertation aims to provide a comprehensive description of atypical mothering experiences among mothers of children diagnosed with Autism Spectrum Disorder (ASD), with a specific focus on their encounters with stress and self-stigma. The study is centered within the Brazilian context and employs a mixed-methods approach to explore the intricacies, challenges, and coping strategies adopted by mothers of individuals with ASD, and how these experiences impact their levels of stress and self-stigma.Participants were recruited through targeted outreach on social media platforms related to ASD, utilizing an online survey created with Google Forms®. Initially, an 18-item questionnaire was distributed online through social media channels, targeting mothers of children diagnosed with ASD. Additionally, two structured scales were applied: (a) the Affiliate Stigma Scale and (b) the Parental Stress Scale (EEPa). While these scales had not been standardized, they were adapted and validated for the Brazilian Portuguese context. Subsequently, six mothers were randomly selected from the 398 participants, consisting of three with higher stress levels and three with lower stress levels, as assessed in a previous protocol. Semi-structured interviews, lasting approximately forty minutes on average, were conducted based on a prepared script. Through content analysis of the interviews, nine categories emerged in this study, including overload, health issues, support, identification, concerns, difficulties, isolation, constraints, prejudice, self-stigma, stigma, romanticization, advocacy, coping strategies, access, stress, inequality, and annulment.The results revealed that mothers play a crucial social role in advocating for the rights and appropriate treatment for their children, employing resistance strategies and social engagement. Notably, 79.8% of the interviewed mothers exhibited low levels of stress, suggesting the need for further studies encompassing the dimension of resilience in the context of constant stress. Other significant findings include the identification of 5% of the sample having children who do not attend school, uneven distribution of caregiving responsibilities between fathers and mothers, and the primary source of information being the internet, possibly without the support of formal healthcare teams. The results underscore the close association between experiences of discrimination and stigma and negative emotional consequences related to caring for children with ASD, as well as the social isolation faced by women and families in this situation.