Striking Delays in Autism Dx Among African-American Kids

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African-American families with concerns about their children's development have to surmount many obstacles before reaching an autism spectrum disorder (ASD) diagnosis with providers, a study indicated.

Among 584 Black children with ASD, the mean age of diagnosis was 5.4 years, more than 3 years after parents first reported concerns about children's development, reported John Constantino, MD, of Washington University in St. Louis, and colleagues.

More than four in 10 parents (41.6%) said they went to multiple providers before their child was diagnosed, and 14% said they saw at least six doctors before reaching an ASD diagnosis, the group wrote in Pediatrics.


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A Black woman holds her sad looking daughter
African-American families with concerns about their children's development have to surmount many obstacles before reaching an autism spectrum disorder (ASD) diagnosis with providers, a study indicated.

Among 584 Black children with ASD, the mean age of diagnosis was 5.4 years, more than 3 years after parents first reported concerns about children's development, reported John Constantino, MD, of Washington University in St. Louis, and colleagues.

More than four in 10 parents (41.6%) said they went to multiple providers before their child was diagnosed, and 14% said they saw at least six doctors before reaching an ASD diagnosis, the group wrote in Pediatrics.


Delays due to a lack of available professionals or significant wait times were reported in 31.3% and 35.6% of the cases, respectively.

"When families were asked about intervention services, those were generally delayed way beyond the time when developmental therapies are recommended and have the highest level of impact on the outcomes of children," Constantino told MedPage Today. "Developmental therapies are capable of preventing severe cognitive impairment in some children with autism and impact their adaptive functioning outcomes."

In 2016 data from the CDC (not stratified by race/ethnicity), 84% of children with suspected developmental delay were evaluated as toddlers, and the median age of diagnosis was about 3 years.

These findings should serve as a "call to action" to the ASD field, and demonstrate structural racism is a "driver of inequity" among children, commented Sarabeth Broder-Fingert, MD, MPH, of Boston Medical Center, and colleagues, in an accompanying editorial.

"To start, a robust response to issues of workforce capacity for ASD diagnosis is needed," Broder-Fingert and co-authors wrote, adding that just 2% of developmental-behavioral or neurodevelopmental pediatricians are African American.

This study does not report a causal link between racism and delayed diagnosis, but bias likely played a role in some of the findings, according to the editorial. African-American families may have experienced racism on the individual level, with healthcare workers behaving in an implicitly biased or discriminatory way, or on the systematic level, operating within systems that unfairly support white children over Black children.

"This issue may be compounded for AA [African American] families who may be more likely than white families to live in areas with few ASD diagnostic specialists and also be more likely to rely on Medicaid," Broder-Fingert and co-authors wrote.

Some states require high levels of assessment and provider certification to make an ASD diagnosis, which may be contributing to the delay for some families, Constantino said, and without enough services to go around, families are forced to compete for limited resources.

When you hear what some families had to do to get 10-15 hours a week of the kind of developmental therapy that moves the needle on ASD, it was a full-time job," Constantino said. "For those under resourced, stressed, single parents, in minority families, it's not fair. The children end up getting the short end of it."

In addition to diversifying the workforce, Broder-Fingert called for more expansive Medicaid reimbursement rates for ASD, and for removing restrictions on who is qualified to make a diagnosis.

"The work to eliminate inequities in ASD diagnosis is hard and complex, but addressing structural drivers of inequity, such as racism, and associated barriers to equitable care, including workforce capacity and diversity, as well as timely access to diagnostic services is critical to making any meaningful change a reality," they wrote.

The study from Constantino's group involved participants from a diversity component of the Autism Genetics Network, Phase II cohort enrolled across four U.S sites. This group was created because the prior national genetic database of children with ASD included a disproportionately low number of African-American children, Constantino said.

Nearly all of the cohort was insured, whether through private insurance (49.3%), public (45.8%), or other (4.7%). Families had a median household income of $37,000 at the time of their first concerns of developmental delay, and 30.2% of parents had a college degree.

About a third of the group (35.2%) had intellectual disabilities confirmed through laboratory psychometric assessments, and these children tended to be diagnosed earlier than kids without documented intellectual disability.

Intellectual disabilities have been shown to disproportionately affect children of color with ASD, diagnosed in 47% and 27% of Black and white children, respectively.

In the current study, researchers noted a "pronounced disparity" in the proportion of children with intellectual disabilities among Black and white children (44% vs 22%), constituting an "urgent public health concern," Constantino and co-authors wrote.

No socioeconomic or family factors, including children's relative cognition compared to family members, were associated with the time to ASD diagnosis or intellectual disabilities, Constantino reported.

"This impairment of intellectual disability lasts for the entire life of the child and is catastrophic in terms of the effect on their ultimate outcomes and whether they can work and live independently," Constantino said. "We need to show whether or not leveling the playing field will spare them that, and it needs to be done now."

One of eight Black children both enrolled in this study and captured in the 2018 CDC surveillance system were thought to have an intellectual disability, but actually tested within the normal range of nonverbal intelligence in this analysis, the authors noted.

"This raises the possibility that AA children with ASD may be disproportionately assumed to have intellectual disabilities and diagnosed as such without adequate confirmation," Constantino and co-authors wrote.

This study did not include comparator arms of children of other races and ethnicities and therefore did not directly compare African American and white children, which is a limitation, the authors noted.

Constantino acknowledged there might be some unmeasured variables contributing to the disproportionately high rate at which African-American children with ASD experience intellectual disabilities. However, before studying any potential biological differences, African-American children need to start receiving timely ASD diagnoses and equitable access to developmental therapy to see whether the disparity persists beyond that, he said.

"The burden of proof is on our field to show that if you were to level the playing field for diagnosis and access to services, it is not possible to close that gap," Constantino said. "I suspect that if we give these children the opportunity, then they will do significantly better."