ATLANTA—Racial differences in parents’ reports of concerns about their child’s development to healthcare providers may contribute to delayed diagnosis of autism spectrum disorder (ASD) in black children, according to a study led by Georgia State University.
The study found that compared to white parents, black parents reported significantly fewer concerns related to symptoms of ASD in their children with the disorder. Black parents were less likely than white parents to report concerns about two ASD symptoms – social deficits and restricted and repetitive behaviors. The findings are published in the journal Autism.
Many parents begin reporting concerns about ASD during the child’s first two years of life, and on average, children are diagnosed with ASD around their fourth birthday. However, black children are diagnosed with ASD at older ages than white children and children of other races. They are also nearly twice as likely as children of other races to be misdiagnosed with disruptive behavior disorders before receiving an ASD diagnosis.
Few studies have explored potential reasons for the racial disparity in ASD diagnosis, though some researchers have suggested unequal access to healthcare and clinician prejudice as explanations. Another possibility is that black parents may report concerns to healthcare providers in ways that de-emphasize ASD symptoms and focus on disruptive behaviors, which may hinder providers from adequately considering ASD. This study offered insight into delayed ASD diagnosis in black children by examining whether the concerns parents reported to providers about their child’s development prior to diagnosis differed based on a parent’s race.
Previous studies have found parents’ characteristics influence their reports of concerns about their child’s development. For instance, parents of lower socioeconomic status (SES) reported fewer concerns about their child’s development than parents of higher SES. Also, parents of boys reported concerns about their child’s development later than parents of girls.
Race may also influence parents’ reports of concerns about their child’s development. Studies of other neurodevelopmental disorders, such as ADHD, have found that black parents tend to underreport their children’s ADHD symptoms and interpret ADHD symptoms as disruptive behavior. This phenomenon may also extend to ASD.
Participants in this study were 174 toddlers from metro Atlanta and Connecticut, ages 18- to 40-months, and their parents. The children were screened for autism spectrum disorder risk, and those who screened positive were invited to a free diagnostic evaluation. Before the evaluation, their parents completed questions soliciting concerns about their child’s behavior and development. Their responses were grouped into 10 categories of concerns, which were classified as either autism concerns (including speech/communication, social and restricted and repetitive behavior concerns) or non-autism concerns (including motor, general development and disruptive behavior concerns).
The researchers found black parents reported fewer autism concerns than white parents. Race did not affect parent report of non-autism concerns, suggesting that the effect was specific to concerns about symptoms of ASD. Race did not influence parents’ reports of disruptive behavior concerns.
Race significantly affected how parents reported concerns about their children’s social deficits and restricted and repetitive behaviors. Compared to black parents, white parents were 2.61 times more likely to report a social concern and 4.12 times more likely to report a concern about restricted and repetitive behaviors.
The findings have important clinical implications. Lower reporting of autism concerns by black parents may affect healthcare providers’ abilities to identify children who need further screening or evaluation.
“Reduced reporting of ASD symptoms may contribute to missed or delayed diagnosis in black children, since healthcare providers often rely on parent report about typical behavior,” said Meghan Rose Donohue, a co-author of the study and Ph.D. candidate in clinical psychology at Georgia State.
Co-authors of the study also include Dr. Amber W. Childs of Yale University; Megan Richards, of Indiana University; and Dr. Diana Robins, formerly of Georgia State and now at Drexel University. The study was actually first conceptualized as Dr. Childs’ undergraduate honors thesis at Georgia State.
The study is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Maternal and Child Health Bureau, a U.S. Department of Education student-initiated research grant, the National Alliance of Autism Research and a National Institute of Mental Health predoctoral fellowship.
To read the study, visit https://journals.sagepub.com/doi/full/10.1177/1362361317722030.