Racial, economic disparities skew New Jersey data on autism, intellectual disability | Spectrum
Black children are significantly more likely than white children to be identified as having autism with intellectual disability, according to data from New Jersey published today in Pediatrics. Autism with intellectual disability is also more commonly identified among children from poorer areas of the state than among those from wealthier areas, the study shows.
Racial and ethnic disparities in autism diagnoses have declined across the United States over the past 20 years. And prevalence gaps among white, Black and Hispanic children in New Jersey have historically been fairly small, according to data from 2014 and 2018. But the new analysis, which looked at data collected there from 2000 to 2016, reveals that significant racial, ethnic and socioeconomic disparities persist in the identification of intellectual disability among autistic children.
“We didn’t expect the level of disparities that we saw,” says study investigator Josephine Shenouda, program manager and epidemiologist at Rutgers New Jersey Medical School in Newark.
Universal autism screening could go a long way toward bridging these gulfs, which likely reflect inequalities in access to a diagnosis rather than true differences in prevalence, Shenouda and others say.
The work does not clarify what drives the demographic disparities, says Andres Roman-Urrestarazu, director of studies in psychology and behavioral science at the University of Cambridge in England, who was not involved in the study. The data come from the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network, which relies on children’s educational and clinical records but lacks information on their insurance status, and thus give only part of the picture, Roman-Urrestarazu says. “Knowing how the U.S. health-care system works, it’s kind of an important thing, as much as ethnicity is a crucial factor to consider. That’s my main criticism.”
The new study dug specifically into the prevalence of autism with and without intellectual disability among 8-year-old children in four New Jersey counties, which account for about a quarter of the state’s 8-year-olds. Together, these counties have consistently shown a higher autism prevalence than most of the other 10 ADDM sites around the country, and the region is highly diverse. Examining county-level data offers valuable insights into who is being identified and when, says David Mandell, professor of psychiatry at the University of Pennsylvania in Philadelphia, who was not involved in the study.
Of the 29,470 children included in the analysis, researchers identified 1,505 who have autism with, and 2,764 who have autism without, intellectual disability.
Autism without intellectual disability was 30 percent less likely to be identified in non-Hispanic Black children compared with non-Hispanic white children, Shenouda’s team found. And it was about 60 percent as likely among children who live in less affluent areas compared with those in wealthier areas.
Because public-school funding is tied to property taxes, children from poorer areas attend poorly funded schools, where their developmental concerns are less likely to be correctly identified, Mandell says. Systemic racism may influence how health-care and educational professionals view minority children, too, he says. “We’ve got a lot of data and a long history showing that for Black kids who have developmental disabilities, those developmental disabilities are often missed or misdiagnosed.” Autistic Black children tend to need to be more severely affected to receive the same attention as autistic white children, he says.
Overall, about 1 in 42 white children has autism without intellectual disability, the study suggests. That number is 1 in 82 for Black children. If the figure for white children can be considered close to the actual prevalence, then officials are likely missing about half of Black children with autism, Mandell says.
Over the 16-year study period, autism prevalence in New Jersey went from about 1 in 104 children in 2000 to about 1 in 31 as of 2016. The prevalence of autism without intellectual disability increased by a factor of five, whereas that for autism plus intellectual disability only doubled. These disparate growth rates could be due to better recognition of autistic children who have average or above-average intellectual abilities, Shenouda says.
The differences are not due to the 2013 change in diagnostic criteria for autism, because the team used the same case definition throughout the entire study period, Shenouda says, and many of the children identified had not been formally diagnosed.
Outside the U.S, a similar pattern has emerged, with a higher proportion of new diagnoses being on the less severely affected end of the spectrum, according to a 2017 study of children in Australia. Based on the four New Jersey counties’ racial and economic diversity, Shenouda and her colleagues suspect the region’s numbers are more representative of the U.S. picture overall than other ADDM study sites are, suggesting that the New Jersey site may predict future national trends.
Across all demographic categories, children do not seem to receive the early screenings recommended by the American Academy of Pediatrics at 18 and 24 months, Shenouda says. But even when children are screened, most do not receive the recommended follow-ups, past research has shown.
One obstacle, Shenouda says, is that many underserved families obtain their routine health care through Federally Qualified Health Centers, which adhere to a different set of screening guidelines: These publicly funded clinics provide care regardless of a person’s ability to pay, but they follow the U.S. Preventive Services Task Force’s recommendation against universal screening.
“If I were to think of something that could help children be identified and have the greatest impact for underserved communities, it would be to follow that recommendation and use effective screeners at 18 and 24 months,” she says.
Cite this article: https://doi.org/10.53053/HKAG7622