Estimated community prevalence of Autism Spectrum Disorder with and without co-occurring Developmental Coordination Disorder significantly exceeds observed prevalence at two Tarrant County sites offering primary and secondary care.

Background: Autism Spectrum Disorder (ASD) can co-occur with Developmental Coordination Disorder (DCD), and ASD+DCD requires integrated care. Cook Children’s Medical Center (CCMC) and the Child Study Center (CSC) are the most comprehensive options for care in Tarrant County, offering integrated developmental pediatrics and secondary ASD services. Lack of integration between primary and secondary services can lead to discontinuity in care or incomplete diagnosis, or prevent families from entering the pathway to ASD-related services altogether. Objective: Determine whether CCMC and CSC serve a patient population proportional to the estimated prevalence of ASD in Tarrant County. If not, it will highlight a need for more primary care sites with integrated autism services. Hypothesis: The number of patients with ASD, DCD, and ASD+DCD served by CCMC and CSC will be significantly lower than estimated prevalence in Tarrant County. Method: This retrospective study evaluated patients who were 0-21 years old at the time of first chart entry, with a diagnosis of ASD, DCD, or ASD+DCD. We compared the observed patient population of ASD, DCD, and ASD+DCD at CCMC and CSC to the expected Tarrant County population. Results: At current prevalence estimates, the expected population of children in Tarrant County with ASD is 8,078, and with DCD is 37,695. At CCMC, the number of patients since 1994 with ASD was 5,520, with DCD was 424, and with ASD+DCD was 59. At CSC, the number of patients since 1994 with ASD was 1,559, with DCD was 46, and with ASD+DCD was 232. The CCMC EMR contained 32 different diagnostic codes for ASD (e.g., Asperger’s Syndrome, active infantile autism, autistic disorder of childhood onset) and 4 codes for DCD (e.g., dyspraxia, developmental coordination disorder). Conclusions: The observed number of patients served was disproportionate to the estimated population. Other public agencies serve a small, non-overlapping population with ASD, unlikely to make up the difference between the estimated and observed population. There is a clear gap in the number of patients with ASD, DCD, and ASD+DCD served at integrated care sites. Many children may be (1) undiagnosed, (2) diagnosed but not seeking care in an integrated care site, or (3) inaccurately diagnosed. Minority groups are at high risk for misdiagnosis; since 41.6% of the Tarrant County population is Black or Hispanic, health disparities may limit their access to of comprehensive evaluation and care.