A luta silenciosa das mães de crianças autistas no acesso às redes públicas

Abstract

This experience report addresses the challenges faced by mothers of children with Autism Spectrum Disorder (ASD) when seeking care in public health and education networks in the city of Ji-Paraná. The experience was recorded during visits to a specialized clinic and the Municipal Center for Specialized Educational Care for Autism. The objective is to highlight the bureaucratic barriers, the lack of training of professionals and the humiliating situations experienced by these mothers, who fight daily for rights guaranteed by law.

The methodology used included participant observation and informal interviews with mothers who frequent these spaces in search of adequate care for their children. The reports indicate that, in addition to the difficulty in accessing specialists, there is an alarming lack of emotional support and guidance for mothers, who often face the process alone. The slowness in releasing essential services, such as therapies and medical monitoring, imposes significant physical and psychological strain on families, making the daily lives of these women even more difficult, as they need to balance work, childcare and constant visits to public institutions. The results reveal a system that, in addition to being inefficient, violates basic principles of human dignity, ignoring the impact that this negligence has on the quality of life of children and their mothers. Without adequate support, these women face challenges that could be minimized with more sensitive and effective public policies. Therefore, it is concluded that there is an urgent need to reformulate the services offered, ensuring a more humane and accessible approach for these families.