Quality of Life in Autistic Children: Discrepancies Between Self‐ and Caregiver‐Proxy Reports and Associations With Individual Characteristics

Quality of life (QoL) is important for everyone and has been identified as a priority for autistic people. However, studies typically focus on caregiver-proxy-reported QoL and its related individual characteristics, even though self- and caregiver-proxy-reported QoL may differ in autistic children. In 74 autistic children (5.04-10.99 years old, intelligence quotient [IQ] 47-141), we sought to determine the level of agreement between self- and caregiver-proxy-reported QoL and determine if self- and caregiver-proxy-reported QoL are differently related to personal characteristics such as age, IQ, autism features, attention-deficit/hyperactivity disorder (ADHD) features, sleep difficulties, and sensory features. Findings suggested poor inter-rater agreement (ICC = 0.16) between self- and caregiver-proxy-reported QoL. Across both self- and caregiver-proxy reports, sensory features and sleep difficulties related to QoL, but age and IQ did not. We also found an interaction effect of reporter on the relation between QoL and both autism and ADHD features, with these associations driven by caregiver-proxy-reported QoL. These findings emphasize the importance of measuring both self- and caregiver-proxy-reported QoL to provide complementary perspectives. Moreover, these results underscore the importance of understanding a child's sensory features and sleep difficulties, as these two areas were similarly related to both self- and caregiver-proxy-reported QoL.