A growing body of research indicates that there are disparities based on race and ethnicity in health care overall. This is also true in the field of autism.
In our series, Seeing Things Differently: Autism Spectrum Disorder, we look at the persistent two-year gap between the time most children can reliably be diagnosed with ASD and the time they generally are. But research shows additional delays for children of color.
According to one study by Dr. David Mandell of the University of Pennsylvania’s Perelman School of Medicine, “there is as much as a year to year-and-a-half difference in the age at which black children are diagnosed versus when white children are diagnosed.”
Since the average age of diagnosis is 4, this would suggest that the average child of color is diagnosed closer to 6. And because research shows that delays in diagnosis limit how well children do, this would mean that children of color often have worse outcomes overall.
Dr. Katharine Zuckerman of Oregon Health & Science University said compared to white kids, children who are racial and ethnic minorities are less likely to be diagnosed with autism at all.
“They are more likely to be misdiagnosed or diagnosed with another condition when in fact they actually have autism,” she said. “Also, when they’re diagnosed they are more likely to have a severe presentation.”
Researchers are currently sorting through why this happens. They say one important point of focus is the parent-doctor relationship, given that families of color report being less satisfied with their care.
Lisa Wilson is the mother of two children with ASD. She realized her pediatrician had noticed concerns about her younger daughter but never shared them with her.
“I was kinda thrown aback,” she said. “Cause I'm like, 'We have been with you for so long, if you had those concerns, why wouldn't you have said something to me a couple of months ago?' I was a little bit furious with her about that. So, I did end up leaving.”
Mandell offered several reasons for this additional delay in autism diagnosis for children of color.
“The way parents talk about autism differs,” he said, “so that black families may use different language than white families in describing their child’s symptoms. And the way parents talk about these disorders may trigger different responses in the clinician.”
Another possibility has to do with continuity of care -- the idea that your child sees the same doctor over and over. At a time when practices are larger, children may be spending less time with the same doctor. That disruption may affect the ability of the doctor to identify developmental disorders like autism.
And Mandell offered a third possibility that needs further study -- which children do physicians think of, when they think of ASD?
“Physicians hold rational, but wrong probabilities in their head of whether a child has autism,” he said. “So they may think that autism is more common among white children than black children. And black children may exhibit some of the symptoms of autism, but the doctor thinks, ‘Oh, it’s a low probability that they have autism. They might have something else.’”
And these racial and ethnic disparities are found in families across the economic spectrum whose children are at risk for ASD, said Zuckerman
“Parents of color, even those who are middle-income or upper-income are less likely to be diagnosed with autism compared to white parents of similar socio-economic status”
Variations in community awareness as well as stigma may also play a role, she suggested, especially when English proficiency is a factor.
“If you talk to a middle-class white person they probably have a lot of awareness of autism,” Zuckerman said. “They hear about autism all the time, on TV, it's in all the media. But in fact a lot of families from minority communities have never heard of it.”
In addition, Mandell said it’s important not to overlook less obvious factors.
“Clearly, there’s implicit bias that is playing a role in whether the clinician thinks about autism as a possibility and elicits information that would help them make that diagnosis,” he said.
Mandell and Zuckerman recommend that parents speak up – voice their concerns about possible ASD to the pediatrician. They say pediatricians must listen to the concerns of parents and take action to address them. And since some parents may not voice their concerns, pediatricians must also screen, said Zuckerman.
“Only a minority of pediatricians are screening children for autism, which the American Academy of Pediatrics recommends,” she said.
Just as with disparities in health care overall, the racial and ethnic disparities in ASD reflect complex broader issues. And there’s urgency in early care, said Mandell.
“If we can address these disparities it means we’re reducing the age of diagnosis and increasing care overall and we will reduce the cost to our society as a whole,” he said.
The U.S. is becoming more diverse, and ASDs, more common.
Mandell and Zuckerman say given all of the factors leading to delay in identification, screening is in many ways the great equalizer, identifying children who may otherwise be missed. They agree that parents need to feel empowered to keep pushing until they get their children’s needs met, because the earlier children are identified and connected to services, the better their outcomes will be.