Family expectations about autonomy of children with intellectual disabiliteies and autism spectrum disorder

Abstract

The disabled person was under a reductionist, deterministic and simplistic look for a long time, focusing only on the diagnosis. The family’s beliefs about the child with a disability can function both as a protective factor and as a vulnerability factor. This study aimed to relate the adaptation of fathers and mothers to the diagnosis of children with Intellectual Disability (ID) or Autism Spectrum Disorder (ASD) with their expectations about the autonomy of their children. This is a descriptive, comparative qualitative and cross-sectional study. Participants are 352 fathers, mothers or guardians of children diagnosed with ID, ASD, or multiple disabilities, who answered the instruments made available virtually, through the Google Forms platform. Two questionnaires and one scale were used, namely: 1) Sociodemographic questionnaire; 2) Parental Adaptation to Disability Scale (EPAD); and 3) Questionnaire of expectations about autonomy. The results indicate that the perception of
thecurrent level of autonomy and severity of the diagnosis were correlated with theexpectation of future autonomy of the child. In addition, parents of children diagnosed with ASD and multiple disabilities indicated a significantly lower expectation of future autonomy than parents of children with ID. Statistically significant differences were also found between thecurrent perception of autonomy and the child’sform of communication and the child’s gender, despite this, no statistically significant differences were found between gender and the expectation of future autonomy. Taken together, these results indicate that parents’ perception of their child’s current condition considerably affects expectations of children’s development of autonomy.