25% of young children with autism are undiagnosed

Kate E. Wallis

One-fourth of children aged 8 years or younger with documented signs and symptoms of autism spectrum disorder, or ASD, are not diagnosed, according to a study published in Autism Research.

The findings also suggest underdiagnosis is a particularly large problem among black and Hispanic children, who are less likely to have a diagnosis of intellectual disability. In late December, the AAP updated its clinical recommendations for ASD — emphasizing the importance of early detection and intervention strategies.

“These findings demonstrate that we can do a better job of directly considering an ASD diagnosis in children of color who show signs and symptoms, and referring them for a comprehensive clinical evaluation,” Kate E. Wallis, MD, MPH, attending physician in the division of developmental and behavioral pediatrics at The Children’s Hospital of Philadelphia, told Healio. “It is important to note that there is no diagnostic test for ASD, such as a blood test, that can be deployed universally to identify all children at risk. Screening tests, recommended at pediatric visits at 18 and 24 months, can help identify early signs and symptoms and provide an opportunity to discuss ASD concerns with parents and caregivers.”

Researchers examined medical and education records of 266,000 children aged 8 years or younger for symptoms that met the surveillance definition for an ASD diagnosis. Children were defined as having ASD if behavioral or social deficits or a prior ASD diagnosis was noted in the child’s records.

Among the 4,498 children identified with ASD, 25% had ASD indicators without having an ASD diagnosis. Of the undiagnosed children, 55% were not known to receive ASD services in public school. Factors associated with not having a clinical ASD diagnosis included nonwhite race, older age at first developmental concern, not having an intellectual disability, older age at rst developmental evaluation, special education eligibility other than ASD and a need for fewer supports.

Wallis noted that the most common ASD screening test has a lower accuracy for identifying ASD in nonwhite children.

“Children of color continue to suffer a legacy of underidentification with ASD,” Wallis said. “The factors driving this are varied and may include low recognition and acceptance of ASD by families and communities and poorer access to diagnostic and intervention services. Professionals in health care and schools can do a better job of identifying ASD concerns in children of color, raising concerns about ASD with families, referring children for evaluation and intervention when concerns are raised and demystifying ASD to decrease the stigma associated with the diagnosis.” – by Eamon Dreisbach

Reference:

Hyman SL, et al. Pediatrics. 2019;doi:10.1542/peds.2019-3447.

Wiggins LD, et al. Autism Res. 2019;doi:10.1002/aur.2255.

Disclosures: The authors report no relevant financial disclosures.