Family Burdens of Caring for a Child with an Autism Spectrum Disorder

Abstract

Autism Spectrum Disorder (ASD) is a group of complex disorders that affect neurodevelopment, behaviors, and physical health. Caring for individuals with ASD could be emotionally and physically taxing. While understanding of ASD as a disorder and its impact on individuals with ASD has gained momentum, the awareness of the burden on families who care for these individuals is less established. This study evaluates these burdens based on a validated questionnaire. Sixteen parents or caregivers were interviewed on their day-to-day physical, emotional, social, cognitive functioning, communication, worry, and daily activity problems. Data on the child’s age, race, gender, level of functioning, comorbidities, family’s socioeconomic status, parental marital status, and secondary family members’ involvement and support were also collected. This case serial study demonstrated high family burdens in all aspects of functioning in the majority of families participated, especially in those with low levels of functioning, medical or behavioral comorbidity, and familial discourse. Sources of burden were discussed. The investigators hope to provide a basis for further extended studies on family burdens in ASD and other developmental disorders.

Keywords

Autism; Emotional Burnout; Family Burden; Social Isolation