Early identification of children with autism spectrum disorder (ASD) relies heavily on parent reports, but some such screening may not reliably capture the experiences of parents from diverse backgrounds, according to a new study.
Vanderbilt University Medical Center researchers set out to explore why children from Black families wait an average of three-plus years for a diagnosis after parents first share their concerns with doctors, regardless of insurance status.
“One of the main take-aways is that Black and multiracial families want providers to listen to them,” said lead author Amy Weitlauf, Ph.D., an associate professor of pediatrics.
“This is especially true for families in underserved or neglected communities, where it’s difficult to get access to care.”
Using a nationwide database, the researchers from Vanderbilt teamed up with Meharry Medical College researchers for a retrospective survey of 400 Black and multiracial families with young children diagnosed with ASD. They asked each family member about their diagnostic experiences to further understanding of the concerns and experiences of these families – and the potential impact of race and culture. The results were published in the Journal of Autism and Developmental Disorders.
Obstacles to Communication
Most parents surveyed reported being the first to notice something different about their children, usually before the age of 24 months. Many families reported language delays, sensory sensitivities and repetitive body movements.
“How they phrased those concerns did not always align with how providers are trained to screen for ASD,” said Weitlauf. “Providers cannot assume that ASD is not present because it is not mentioned in a direct or recognizable way.”
“One of the main take-aways is Black and multiracial families want providers to listen to them.”
Almost a quarter of families surveyed felt that race negatively impacted their experiences, reporting a lack of knowledge about racial differences or providers who seemed uncomfortable interacting with their children. Black parents reported having their concerns dismissed more often, and ASD symptoms were often ascribed to poor parenting.
Overt racism was also reported, apparently from both unconscious and conscious biases, which parents said played a large role in the delayed diagnosis of their children.
“It may take visits to six different professionals for a Black child to receive an ASD diagnosis,” said co-author Theodora Pinnock, M.D., assistant professor in the Department of Pediatrics at Meharry Medical College.
Some ASD symptoms mimic those of Down syndrome, which can be confusing. Repetitive behavior and atypical behavioral responses may be viewed as impaired social skills or emotional issues, other areas of concern.
“Parents of color don’t necessarily describe their children in terms of their symptoms,” Pinnock said. “If they feel the provider isn’t listening, they may not share important details. The provider has to pick up on the parent’s tone or the diagnosis may be delayed.”
Diagnostic Challenges
Even after diagnosis, Black and multiracial families can still face challenges in accessing quality care.
“Parents need to navigate through school, community, and home, but the respondents said providers often did not offer helpful information,” Pinnock said.
“For a Black child to receive an ASD diagnosis, it may take visits to six different professionals.”
Many Black or multiracial parents lamented a lack of nearby services and therapy centers, especially those that accepted their insurance.
An ASD diagnosis is equally as common in Black and white children, but Black children face greater challenges.
“We are catching Black kids later, possibly with more severe disease, and then we are not providing enough services to support them,” Weitlauf said.
More education is needed, especially in the Black community, to foster earlier ASD diagnoses.
“We need to go to places where people of color are likely to be, such as daycare centers, public health agencies, and churches,” Pinnock said.
The researchers are developing a screening tool aimed at diverse families and medical providers. The joint five-year project would involve both families and providers. “We can do a better job of identifying ASD kids of diverse backgrounds earlier,” Weitlauf said.
