Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability

Research indicates that youth with autism spectrum disorder often experience unmet health care needs and receive poorer quality of care. Intellectual disability commonly co-occurs with autism spectrum disorder; however, the nature of unmet health care needs and health care quality in youth with autism spectrum disorder and intellectual disability have not been investigated. As such, this study sought to examine associations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in youth with autism spectrum disorder. Data from this study were acquired from the 2016-2018 National Survey of Children's Health, a nationally distributed caregiver-report questionnaire. Results found that the frequency of unmet mental health care need was significantly higher among children with autism spectrum disorder with co-occurring intellectual disability than those without intellectual disability. Using a structural equation modeling approach, it was found that the total effect of co-occurring intellectual disability on composite health care quality was significant. Investigation of indirect effects indicated that unmet mental health care need mediated the relationship between co-occurring intellectual disability and health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs, and that their unmet mental health care needs may negatively impact their health care quality. Lay abstract The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.