More kids in the U.S. are being diagnosed with autism, according to new data analysis from the Centers for Disease Control and Prevention (CDC), and the numbers show the rise is particularly acute among children of color.
The CDC report looked at data from 2020 and found that one in 36 children had been diagnosed, compared to one in 44 during the previous report, which looked at data from 2018. And for the first time, the research found that more Black, Latino, and Asian or Pacific Islander children were diagnosed with autism compared to white children.
Dr. Shafali Jeste, chief of neurology at Children's Hospital Los Angeles and a professor of neurology and pediatrics at USC, told LAist's public affairs show "AirTalk — which airs on 89.3 — that part of the increase in diagnoses can be attributed to better awareness.
“Pediatricians and healthcare providers are being more proactive about providing families with preliminary diagnoses so that children can access services,” Jeste told "AirTalk" host Larry Mantle.
The CDC runs a large program called the Autism and Developmental Disabilities Monitoring Network (ADDM), which goes to 11 sites around the country and examines the health and educational records of more than 200,000 8-year-old children. Jeste says these records reflect improved awareness and stronger healthcare practices that help reach historically underserved groups, specifically Black and Hispanic children.
While there has been progress with early diagnosis, Jeste says there is a huge disparity in the services that these children are provided after they’re diagnosed, like interventions and educational support.
She says the gap is more pronounced in families where English is a second language, which is the case with many of the patients she sees at Children’s Hospital Los Angeles.
We can explain it all day long in medical terms, in educational terms, but if that has no meaning for a family, it's not gonna go anywhere."
Kristina Lopez, an associate professor of social work at Arizona State University, researches disparities in services for Latino children and teenagers with autism. She says the language barrier is just one of the obstacles that can stand between Latino families and the services their children need.
“It isn't really just Spanish that makes [services] available to a family. It's really the culture itself,” Lopez says. “Making sure that the terms aren't just something you put into Google Translate and simply translate from English to Spanish, but making sure that you work with communities, specifically Latino parents that have children with autism, and ask them what they need.”
Lopez says part of her role is listening to what these parents highlight as their biggest needs, and thinking through how to infuse those needs into intervention programs — adding that white, middle class children have benefitted from this approach for a long time.
Lopez says there is a need for more clinicians and service providers, but that they need to be culturally sensitive to the communities they serve by examining their internal biases and being a supportive and intentional listener. For example, Lopez says, Black and Latino families are often stereotyped as not wanting support services for their autistic children, but historically, there has not been enough outreach tailored to these communities in the first place.
One of the goals of outreach services is to provide diagnosis and intervention early in childhood, which can have a large positive impact on children’s development as they get older. In fact, advances in clinical research have been helping with identifying children with autism even in the first year of their lives, especially for children with a genetic link to the disorder. Targeted treatment for genetic causes and universal screening after birth are hot-button issues among parents.
Many families, across backgrounds, can sometimes be resistant to or worried at the idea of their child being labeled.
Lopez says she tries to address this by making the services as transparent as possible. Sometimes this means looping in more of the child’s relatives, like grandparents, uncles and aunts. It also means explaining autism, and the related behaviors, in ways that people can actually understand.
If you don't find that in your first try, then keep looking and ask other parents who they might have found.
“Because we can explain it all day long in medical terms, in educational terms, but if that has no meaning for a family, it's not gonna go anywhere,” Lopez says. “And they’re still not gonna come to services, or invite services into their home.”
Jeste too says that these services should be viewed as a partnership between clinicians and parents, with the parents’ firsthand observations being highlighted.
“I always encourage families to be proactive, partner with a clinician or provider that you trust and that listens to you. And if you don't find that in your first try, then keep looking and ask other parents who they might have found,” Jeste says. “We all, at the end of the day, want to help children. We want to make sure that they are meeting their full potential.”
