In recent years, huge advances have been made to increase autism awareness and diagnosis. But these advances have also highlighted a disparity: The Centers for Disease Control and Prevention (CDC) reports that white children are more likely to be diagnosed with autism spectrum disorder (ASD) than Black or Hispanic children. This isn't because white children are more likely to have autism, but rather because white children often have increased access to autism screening and care.
This disparity in autism diagnosis is especially worrying because early diagnosis—by age two—is so important to help children succeed.
“When children are diagnosed early and have access to intensive treatment, they have better language and cognitive outcomes,” says Tisa Johnson-Hooper, M.D., medical director of the Henry Ford Center for Autism and Developmental Disabilities. “Among those who are diagnosed with autism, we’re seeing a greater proportion of African American children carrying the burden of co-occurring intellectual disabilities. Late diagnosis and intervention certainly can contribute to this alarming statistic. When autism isn’t addressed during the preschool years, we forgo the chance to intervene at the most critical time, when the brain is the most adaptable.”
How To Decrease Disparities In Autism Diagnosis
The good news? When compared to previous years, racial disparities in autism diagnosis have already started to decrease. But there is still work to be done. “I do think it’s important to tout the progress we’ve made,” says Dr. Johnson-Hooper. “But we also have to stop to see who has been left behind and why. How can we level the playing field for all children with access to screening, diagnosis, treatment and quality of care?”
Here, Dr. Johnson-Hooper shares what can be done to ensure all children have the ASD screening and treatment they need.
1. Know that signs of autism can be seen at a young age. Symptoms of ASD can often be seen by 18 months or younger; by age 2, a definitive diagnosis can be made. The CDC has laid out developmental milestones that your child should reach at specific age ranges. (For example: showing facial expressions like happy, sad, angry and surprised by 9 months of age, or using gestures—like waving goodbye—by 12 months of age.) You can view the entire list here. If you are worried your child is not meeting certain milestones, talk to your pediatrician who may recommend autism screening.
2. Be sensitive when discussing autism screening. “Autism can mean something different to people based upon their religion or culture,” says Dr. Johnson-Hooper. “Doctors should be keenly aware that when addressing autism, there may be a stigma this child will have to endure within their community. If possible, it’s a good idea to ask people within that community what the best way would be to have that conversation.”
And sometimes, parents might attribute signs of autism to cultural differences. "They might think developmental differences are due to the fact that they don't have a large extended family around them,” says Dr. Johnson-Hooper. “While this is a reasonable justification, it’s not the case. Or they might say it’s because they’re raising a bilingual child. But being exposed to a bilingual family isn't a detriment—it's actually a huge benefit for your child."
3. Understand—and overcome—inherent biases. It has been shown that symptoms of autism in Black boys are more likely to be seen as behavioral issues. “Sometimes I think providers need to do a better job listening to parents,” says Dr. Johnson-Hooper. “For people of color, studies show their concerns are often not acted upon. There are unconscious biases providers may have. These biases impact a provider’s judgement and decision to refer for autism diagnosis.”
4. Implement universal screenings and increase access to care. Beyond racial disparities, there are also socioeconomic and geographic disparities in autism diagnosis. “In Michigan, for example, most of the diagnostic centers are on the east side of the state. Those who live in the western and northern parts of the state must travel extensively for care,” says Dr. Johnson-Hooper. “And then you have to think: what does this mean for our Indigenous population? We need better access to diagnostic and therapy services—and all providers should follow the screening recommendation for autism at 18 and 24 months for children.”
5. Diversify research. “Historically, autism research has included a greater proportion of white boys to inform how symptoms of autism are characterized,” says Dr. Johnson-Hooper. “This means girls are left behind because they may express their symptoms differently than boys. We need to diversify autism research so that no child’s symptoms are overlooked.”
For more information on the Henry Ford Center for Autism and Developmental Disabilities, call 313-972-9009 or visit henryford.com/services/autism.
Dr. Tisa Johnson-Hooper is a board-certified pediatrician and serves as the medical director of the Henry Ford Center for Autism and Developmental Disabilities. She sees patients at Henry Ford Medical Center—New Center One in Detroit.
