As Autism Rates Rise, A Colorado Mom And CU Boulder Researcher Seek Answers
Joaquin Garcia is a big, strong 6-year-old boy who loves sports.
"He plays everything," said his mom, Herminia Garcia. "I have him playing basketball. He loves football. He loves tossing that ball, he's really good with his arm. He's doing a little bit of soccer."
But when Joaquin was a toddler, Garcia said he couldn't control his physical movements. Joaquin didn't know how to push his toy car. He wouldn't make eye contact when she spoke to him. Joaquin was emotional and aggressive.
Garcia, who has an older son, said a red flag went up when Joaquin didn't hit the same milestones.
"I just started seeing he wasn't talking. He wasn't, you know, doing stuff that other kids would do," she said. "He should've been going potty, potty training and that type of stuff."
At first Garcia just thought she had a bad kid who wouldn't listen. Then a nurse suggested Joaquin be tested for autism which Garcia did through the Jeffco School District. He was diagnosed with autism spectrum disorder (ASD) and referred to Firefly Autism in Denver for treatment.
Firefly Autism provides a range of services including early onsite intervention and home and community-based programs. Joaquin is enrolled in Firefly's early childhood program. The full-day, one-on-one therapy works to identify and bridge developmental gaps.
"When he first came to us, he was kind of like a bull in a china shop. (Joaquin) had a difficulty coordinating with his peers," said Ken Winn, Firefly's chief clinical officer. "So, we work a lot with group dynamics and social skills within a group."
Joaquin is Mexican and black, and one of a growing number of children of color to be diagnosed with ASD.
In 2018 the Centers for Disease Control and Prevention estimated about one in 59 children have ASD. That's an increase from one in 68 children identified in the previous estimate released two years earlier.
The findings were based on data from 11 U.S. communities in 2014. They are part of the CDC's Autism and Developmental Disabilities Monitoring Network — or ADDM — which tracks the prevalence of the disorder in 8-year-olds every two years.
The CDC said in a press release that the increase could be due in part to improved diagnosis in black and Hispanic children. Their autism prevalence rates were catching up with those found in white children.
This conclusion led Cynthia Nevison, a research scientist at the University of Colorado Boulder specializing in earth and environmental science and climate science to take a closer look at the data. She's one of the co-authors of a recent study published in the Journal of Autism and Development Disorders.
While studying autism doesn't fall into Nevison's daily work, over the past decade she's conducted pro bono research focused on quantifying time trends in autism.
Her interest in the developmental disability started about 12 years ago when she was expecting her first son. Nevison read an article about autism rates in boys and became concerned.
"Today a pregnant woman has something like a one in 25 chance or a 4% chance that her son will develop autism," she said. "Yet our public health agencies are telling her, they don't really know why this is happening, that there's no practical advice they can give her to prevent it. The best she can aim for it is early diagnosis."
The public has accepted the better and expanded diagnosis narrative but, Nevison countered, it's contradicted by government data.
The study used data from 2018 and older CDC reports and 18 years of annual data from the Individuals with Disabilities Education Act (IDEA) which tracks 3 to 5-year-olds in each state. A main contribution of the study Nevison said, was extracting and organizing the data so that it could be visualized and analyzed.
The conclusions confirmed the results of previous studies that showed an increase in ASD rates in children of color. But Nevison also found rates among Hispanics are also rising rapidly and if the trend continues, they will soon surpass white children. Conversely, rates for black children have caught up with and passed their white counterparts.
"The important thing to note there is that poses a serious challenge to this idea that there's this natural genetic level in the population," Nevison said. "Because if blacks are actually surpassing the rates of whites that suggests that there are environmental factors at play to which blacks are more vulnerable."
The study doesn't pinpoint exact environmental factors that could've impacted autism rates in children of color. Nevison believes more research needs to be done.
The question was posed to Winn at Firefly Autism. He's worked in the field for over 30 years and said he's seen a steady increase in ASD rates but, in the past, it was mainly diagnosed in white children.
"But we've seen over the years that spread into communities of color," Winn said. "I don't believe there's anything specific to those communities that is indicative of that change in prevalence. I think it's about awareness and de-stigmatizing the diagnosis of autism."
This viewpoint is also shared by the Autism Society of Colorado. In a written statement, the organization pointed to other studies that found Hispanic and black children receive a diagnosis of ASD later in life and are more likely to be misdiagnosed first compared to their white counterparts. These disparities are caused by several factors including language barriers, cultural factors and ASD identification practices that are often standardized with white monolingual children.
Both Firefly Autism and the Autism Society of Colorado said early detection is key. They offer outreach programs to help parents learn how to detect the signs of ASD. The earlier the diagnosis, Winn said, the earlier a child can receive treatment.
Garcia didn't know anything about autism before her son, Joaquin was diagnosed. But she's seen developmental progress since he started coming to Firefly Autism a couple years ago. The goal is for Joaquin to transition back to a regular school one day.
"I started seeing lots of changes in Joaquin," Garcia said. "He started listening, he started following direction, he started knowing how to play with his toys, playing with peers."