Beyond Autism Severity: the Role of Medical Providers in Parenting/Caregiver Aggravation

Objectives The present study evaluated the relationship between autism spectrum disorder (ASD) severity and parenting aggravation with caring for their child in the context of additional child mental health concerns, perceptions of family-centered care, and caregiver frustration with accessing services. Methods Participants were 1142 caregivers of children with ASD between the ages of 1 year and 17 years old ( M = 11.06, SD = 4.217) from the 2016 National Survey of Children’s Health. The child sample was primarily male (81.1%) and White (77.1%). Caregivers responded to questions about their child’s diagnostic severity, additional mental health diagnoses, perceptions of family-centered care, frustration with accessing services, and parenting aggravation with caring for their child. Results When controlling for child’s age, the relationship between ASD severity and parenting aggravation with caring for the child was mediated by additional child mental health concerns, perceptions of family-centered care, and frustrations with efforts to get services. Conclusions Increases in ASD severity was associated with more child mental health concerns which, in turn, was associated with lower perceptions of family-centered care. This decrease in perceptions of family-centered care was associated with more caregiver frustration about getting access to services which, in turn, was associated with higher levels of parenting aggravation with the child. Results provide future directions for additional research which could provide aid and support for providers and families of children with ASD.