Black children with autism spectrum disorder (ASD) were diagnosed an average of more than three years after their parents expressed concerns about their development, a new study found.
“These delays are believed to play a significant role in an even more serious health disparity which involves the proportion of children with autism who additionally are affected by intellectual disability (ID),” author John N. Constantino, M.D., director of the Intellectual and Developmental Disabilities Research Center at Washington University, said in a video abstract.
The AAP recommends developmental screenings at 9, 18 and 30 months and screening for autism at ages 18 and 24 months. Researchers analyzed data on 584 Black children with autism enrolled in an autism research network at one of four sites and found that on average, children were diagnosed at 65 months, according to “Timing of the Diagnosis of Autism in African American Children,” (Constantino JN, et al. Pediatrics. Aug. 24, 2020, https://doi.org/10.1542/peds.2019-3629).
After parents expressed concerns about their child’s language, development or behavior, it typically took more than three years before being diagnosed with autism, despite almost all of the families having some form of insurance.
About 36% reported a significant wait time to see a professional, 42% saw multiple professionals and 14% saw at least six professionals before being diagnosed, according to the study.
Authors said the delays could mean these children are diagnosed too late for early interventions and could contribute to high rates of intellectual disability, which was diagnosed in about 35% of the children. The data showed no link between the children’s IQ scores and their family income, mother’s education, preterm birth or the IQ of their parents/siblings.
Delays also may explain the disparities between Black and White children, authors said. Data from the Centers for Disease Control and Prevention found 47% of Black children with autism had an intellectual disability compared to 27% of White children. In that study, Black children with autism had their first evaluation and diagnosis several months later than White children, and the disparity was especially prominent among those with an intellectual disability.
“With these findings, we highlight a pressing need to determine whether broad implementation of timely diagnosis, when coupled with high-quality early intervention, would reduce the proportion of (Black) children with autism and comorbid ID,” authors of the Pediatrics study wrote.
Authors of a related commentary said the findings suggest structural racism played a role in the inequities and must be addressed.
“The work to eliminate inequities in ASD diagnosis is hard and complex,” they wrote, “but addressing structural drivers of inequity, such as racism, and associated barriers to equitable care, including workforce capacity and diversity, as well as timely access to diagnostic services is critical to making any meaningful change a reality.”