Desafios e resiliência: o impacto na qualidade de vida das mães de filhos com transtorno do espectro autista

Abstract

Given that Autism Spectrum Disorder (ASD) causes significant changes in family dynamics—particularly in the routines of mothers, who often shoulder the bulk of caregiving responsibilities—this study aimed to evaluate the emotional, social, and economic impacts associated with caring for children with ASD and the resulting effects on maternal quality of life. This was an observational, descriptive, cross-sectional study involving 37 mothers of children with ASD enrolled at the Municipal Center for Specialized Educational Assistance for Autism in Cacoal, Rondônia. Data were collected using a structured questionnaire comprising 29 objective questions and one open-ended question. The results showed that 75.7% of the mothers felt constantly overwhelmed by caregiving routines, and 78.4% reported having no time for themselves. This lack of time also affected self-care, as 75.7% did not engage in physical activity. Regarding mental health, 73.0% were not receiving psychological care, yet feelings of sadness were present in the majority of participants. Sleep quality was rated as fair or poor by 81.0% of the mothers. Social and economic impacts were also observed: 75.7% reported facing prejudice related to their children's condition; 94.6% stated they had avoided certain environments due to exhaustion or fear of prejudice; and 86.5% faced financial difficulties in covering treatment costs. Despite these challenges, 91.9% perceived an improvement in their quality of life after their children began therapy. The study concluded that caring for children with ASD significantly affects maternal quality of life, involving physical and emotional strain, reduced self-care, and social isolation. The findings reinforce the importance of expanding support networks and psychological support, as well as implementing measures that incorporate mothers' needs into the care provided to families of children with ASD.