Autism Screening and Diagnosis in Children with Congenital Heart Disease

AimThis study determined the prevalence of positive autism screening at 18-30 months of age and autism diagnosis after age 2 years among children with congenital heart disease (CHD). We evaluated sociodemographic, clinical, and medical factors, and subgroups of heart disease associated with autism likelihood and/or diagnosis. MethodsSecondary analysis of data collected from the Stanford site of the California Perinatal Quality Care Collaborative and Lucile Packard Children's Hospital electronic health records. Participants (N = 94) were children born between 2016–2020 with CHD who required surgery before discharge from the neonatal intensive care unit and who had a High Risk Infant Follow-Up (HRIF) visit at 18-30 months of age. Heart disease was classified as cyanotic or acyanotic based on the need for oxygen supplementation. Scores on the Modified Checklist for Autism - Revised/Follow-up (M-CHAT R/F) at HRIF visit and evidence of an autism diagnosis were extracted. We compared sociodemographics, clinical, and medical factors across two heart disease subgroups, positive or negative screens, and autism diagnosis. ResultsThe prevalence of a positive screen was 14.6% and of autism diagnosis 11.7%. When considered independently, length of hospital stay was the only clinical factor that was significantly associated with positive screen results; children with longer stays in hospital had higher likelihood of positive screens. However, when sociodemographic and clinical factors were considered together, no factors were associated with screen results. Performance of the M-CHAT-R/F in relation to an eventual autism diagnosis showed sensitivity of 66% and positive predictive value of 57%.ConclusionIn this sample, children with CHD were more than 3 times more likely to have positive autism screens and to receive the diagnosis of autism than is reported for children in the general population. Early screening for autism is critical in children with CHD to promote early diagnosis and intervention. Future studies should consider other factors in relation to the development of autism in children with CHD to identify strategies for reducing autism prevalence.