Improved diagnostics, treatments increase autism diagnoses in Utah minorities

MAGNA, Utah — A new study showed one in every 40 8-year-olds in Utah had been diagnosed with autism spectrum disorder. For years, research found white children had the highest rates of autism, but, for the first time, diagnoses among historically under-served populations in Utah are now comparable with white children.

Jennifer Lopez knew early on something was different with her now almost-4-year-old son, Kaden Alcantara.

“He didn’t like to play with toys,” she said. “He just wanted to stare at the wall or the TV, blank — no emotions at all.” Kaden often threw tantrums and missed developmental milestones. “Then when he was close to one year, I noticed that he didn’t want to stand up,” she recalled. She addressed her concerns with their pediatrician at Kaden’s regular wellness check-ups. It wasn’t until Kaden was about 18 months old that her doctor suggested he might have autism spectrum disorder.

Lopez said she felt a range of emotions. “Depressing, at the same time angry, and well, all the emotions,” she described.

She says the process of getting to that diagnosis was less than ideal. Her doctor said she needed to wait until Kaden was between 2 to 2.5 years old to take a formal autism evaluation. The wait was painstaking as a worried mom. In the meantime, she turned to Google for more information.

Lopez is transparent about the unique barriers she faces as a Hispanic mother — first a lack of awareness among her community. She wishes she was more familiar with the signs earlier.

She remembers the doctor telling her Kaden may have autism and thinking to herself, “OK. What is that?”

Kaden goes to therapy five days a week for three to four hours at a time– a significant demand on her time given she also works part-time to qualify for health benefits to cover Kaden’s treatment. With no local family support, she admits it’s been hard.

“My husband has to work more hours in order for me to be more at home and take care of my children,” she said.

Despite those challenges, Dr. Debbie Bilder, professor of psychiatry at the Huntsman Mental Health Institute, and Dr. John Taggart Hopkin, presidential endowed chair in Autism Research and Clinical Translation, said the services are getting better. Recent National CDC research shows autism is now being recognized in a more diverse group of children — at least 30% higher among Asian/Pacific Islander, Black, and Hispanic children in 2020 than in 2018.

“In the past, it was primarily children of Non-Hispanic white dissent, yet now we are seeing a broader, more diverse group of children with autism being recognized, being identified and particularly here in Utah, that is among the Latino community,” Bilder concluded based on research from a study of Utah 4-year-olds.

While the national research saw a rise in autism diagnoses among Asian/Pacific Islander and Black children, the data was not statistically significant in Utah because of the low number of affected children.

Bilder credits the increase to better diagnostic tools and treatment services among these populations. “You may worry that your child has autism, but if you cannot access diagnostic services or treatment services, it is unlikely that your child is going to be identified with autism,” she explained. Bilder said Utah has seen a shift in the socioeconomic status of children getting help. “Those kids with the lowest income tier are more likely to be identified,” she said. “We’ve been able to help those most vulnerable children in our community access these needed diagnostic and treatment services.”

“I realize families with less financial abilities still have barriers in getting their child access to the treatment. It’s time-consuming. Their jobs may not be as flexible as other people’s jobs,” she added.

Bilder encourages all parents to be aware of the signs. “It is manifested by children having difficulty with social interaction and communication, as well as having restricted interests or repetitive behaviors or abnormal responses to sensory input,” she explained.

Other signs include not having a social smile by two months of age, not making eye contact, developing language later than expected, or losing social/language ability. Bilder said these factors could impact a child’s ability to become independent.

Over the years, Lopez has learned to manage Kaden’s tantrums and to introduce him to unfamiliar places and people. “The noises, a lot of kids, crowded place — those are things that I need to avoid,” she said.

Though Kaden is nonverbal, Lopez believes her son is showing progress. He now makes eye contact, communicates better, plays with his brother and is starting to show love to his family. “He will look at [his dad] and his smile and sometimes runs to him and give him the kiss,” she said.

Bilder is also encouraged by the growth she sees in patients with the right help. “They’ve learned how to engage, they’ve learned how to manage their emotions when they become overwhelmed so that they can have these relationships with those individuals around them,” she said.

Bilder said legislation passed over the last decade, including Medicaid coverage for autism treatment, has significantly contributed to the increase in diagnoses and access to services among all populations.

Utah received four more years of funding to continue to increase awareness, ensuring parents and providers understand the signs of autism development, the screening and referral processes. This funding will also help the state identify particular communities that may have delayed access to care.

For more information, check out the CDC’s program Learn the Signs. Act Early. and visit the Huntsman Mental Health Institute.