FEARS AND UNCERTAINTIES EXPERIENCED BY CAREGIVERS OF PEOPLE WITH AUTISM SPECTRUM DISORDER (ASD)

Abstract

This study aimed to understand the challenges faced by caregivers of individuals with Autism Spectrum Disorder (ASD), focusing on fears, uncertainties, and coping strategies in the context of fragile support networks and public policies. This is an integrative literature review conducted between February and May 2026, using PubMed, SciELO, and BVS databases, including articles published from 2015 to 2026 in Portuguese, English, and Spanish. A total of 35 studies were selected after applying inclusion and exclusion criteria. The findings indicate that continuous care for individuals with ASD is associated with high levels of stress, emotional burden, anxiety, and reduced quality of life among caregivers, especially mothers. The lack of institutional support and difficulties in accessing services and social benefits further intensify this burden. Coping strategies identified include social support, parent training programs, interventions based on Applied Behavior Analysis (ABA), and the use of assistive technologies. It is concluded that, despite legal advances, significant gaps remain in the implementation of effective public policies.