Autism spectrum disorder and complex healthcare needs: The role of healthcare experiences

Background: Parents of children with an autism diagnosis frequently described the excessive costs and inordinate amount of time associated with coordinating autism - specific treatments. These ongoing sources of stress have adverse effects on parents' personal wellbeing. Findings suggest that the systems of care aimed at improving outcomes for children with autism may, in fact, negatively affect their parents. Further research is necessary to evaluate the degree to which system - level variables affect the relationship between autism severity and parental wellbeing. Method: The sample included 1711 parents of children with a current ASD diagnosis who participated in the 2017 National Survey of Children's Health. ASD complexity was estimated as a latent variable consisting of four observed scores; ASD severity and the frequency of co - occurring medical, developmental, and emotional/behavioral conditions using a Confirmatory Factor Analysis. Healthcare experiences (i.e., Care Coordination, Family - Centered Care, Shared Decision - Making) were analyzed as mediators using structural equation modeling to evaluate the degree to which each variable explained the relationship between ASD complexity and parent outcomes. Results: Care coordination mediated the relationship between ASD complexity and parental outcomes. Family - centered care significantly predicted parent stress and health, however, it was not a mediator of the relationship between ASD complexity and parent outcomes. Shared decision - making was a mediator of parent health, but not parent stress. Conclusions: The results of this study indicate healthcare experiences significantly influence parental wellbeing and are an important consideration among parents of children with complex ASD.