Researchers from the Vanderbilt Kennedy Center’s (TN IDDRC, UCEDD, LEND) Treatment and Research Institute for Autism Spectrum Disorders (VKC TRIAD) and Meharry Medical College (MMC) are collaborating to better understand the diagnostic experiences of Black or African American families with children with autism spectrum disorder (ASD).
Though it is now possible to identify ASD in children as young as 18 months, African American children with ASD experience significant delays in diagnosis and access to treatment services.
Amy Weitlauf, Ph.D., associate professor of Pediatrics and associate director of research for VKC TRIAD, and Theodora Pinnock, M.D., assistant professor of Pediatrics at MMC and Associate Dean of Student Affairs and Admissions, received a Simons Foundation SPARK Research Match Diversity, Equity, and Inclusion Initiative award. They worked with Alexandra Miceli, BA, TRIAD associate program manager, and Yewande Dada, MHS, MMC medical student, to survey parents of children with diagnoses of ASD who self-identify as Black or African American (including bi- or multi-racial families). More than 400 families completed the Diagnostic Experience Survey, a new instrument designed as part of the ongoing partnership.
The survey includes questions about the diagnostic process, such as the first person to bring up developmental concerns, timing and content of first concerns, and number of professionals seen. Families were asked about what they thought could have impacted the diagnostic process, including race, ethnicity, and whether pediatricians were helpful, as well as what would have made the process easier.
“We wanted to hear directly from families about their diagnostic experiences, about what they wish they would have done differently, and about what the medical system should do to better support parents who are concerned about autism for their children,” said Weitlauf. “Many of the families told us that the concerns they raised about their children were not taken seriously. And many talked about what Dr. Pinnock has been telling us for years—that a Black or African American family might describe developmental concerns differently, or emphasize some symptoms more than others. And when this happens in a visit where there is already potential bias, whether recognized or not, a provider might be more likely to overlook or dismiss those concerns. So, it’s more evidence that in addition to ongoing training in recognizing bias, we also need to think about how we can change the screening process to be more culturally appropriate and welcoming.”
“Our families spoke a lot about the cultural differences that they wished their provider would have known about,” said Pinnock. “Autism is a diagnosis with behaviors that families may or may not understand as part of the disorder, but rather think that the behaviors are specific to their child or culture. We’ve got to be able to sensitively query whether the behaviors are consistent with the disorder. If we as providers can respectfully listen, learn and acknowledge that parental concerns are valuable and valid, not only will we have changed how autism is diagnosed, we also will have changed the doctor-patient relationship in these Black families.”
The team is conducting a qualitative data analysis and, though findings are preliminary, themes and recommendations have emerged. They are related to improving the screening and diagnostic process, the need for culturally competent providers and procedures, parent emotional experiences, the role of broader community supports in understanding and accepting disability, and early symptoms that could be included in screening procedures. The goal of this project is to develop new tools and educational materials that help pediatricians, diagnosticians, and families.
To learn more about ASD identification in Black families, watch the VKC TRIAD and MMC co-sponsored lecture video, Are We Closing the Race/Ethnicity Gap in ASD Identification and Outcome.
To learn more about current prevalence of children in Tennessee with autism spectrum disorder, see triad.vumc.org/autismdata/.