Delayed assessments of autism in children remain a problem, particularly in Minnesota, that worsened in the first year of the COVID-19 pandemic.
Evaluations of children at age 4 had been increasing from 2017 to 2019 but sharply declined in mid-2020, according to a report Thursday from the Centers for Disease Control and Prevention, which tallied autism rates in the Twin Cities and 10 other U.S. communities. Evaluations increased later that year in most other communities after lockdowns and other COVID-19 restrictions were lifted, but not in Minnesota.
Research over time will tell whether the disruption resulted in delayed diagnoses that affected growth and development of children with autism, said Amy Esler, a University of Minnesota psychologist who co-authored the CDC report.
"What we know from other research ... is that any delay to identify, any delay to intervention, has long-term impacts," she said.
Despite the delays, a companion study found an increase in autism prevalence in 2020. One in 34 8-year-olds in Minnesota had autism based on medical or educational evaluations, according to the CDC report, which is based on data from school districts in Hennepin, Ramsey and Anoka counties.
"Autism really is no longer a low-incidence disability, based on these numbers," said another U co-author, Jennifer Hall-Lande. "If we think of an average third-grade class in Minnesota, it is now likely there will be at least one child with autism in that class."
The CDC group for the first time estimated that more than 1% of female 8-year-olds have autism, though the diagnosis remains four times more likely in males. The increased prevalence isn't necessarily a sign the developmental condition is becoming more common. Diagnoses had been lacking in minority groups, and at least some of the increase reflects better recognition of the disability in those groups.
The 2020 version of the biennial report was the first to estimate a higher prevalence rate of autism in black and Hispanic children in the U.S. compared with white children. Diagnoses historically were more common among children from white middle- and upper-income families with the means to seek evaluations.
Among the sites studied, Minnesota had the highest percentage of children with autism who had only received a special education designation and the lowest percentage with a medical diagnosis.
The median age of a medical diagnosis among the 8-year-olds with autism was 4 years, 11 months in Minnesota. That was 10 months longer than the national median, which is a problem because a diagnosis unlocks services that aren't available with a special education designation, said Ellie Wilson, executive director of the Autism Society of Minnesota.
"We use a diagnosis like a ticket in order to qualify for those service programs," she said.
Even in a non-pandemic year, it takes months to get medically evaluated because of a shortage of providers in Minnesota. The U's autism clinic stopped adding names in 2021 after its waiting list reached 600.
"It is stomach-turning to think of all the kids who are waiting right now for a diagnosis," Esler said.
School closures contributed to the decline in 2020 in school and medical autism evaluations. Children weren't in day-care facilities or schools, where teachers often notice developmental differences among other children and recommend autism screening.
Children with autism also are more likely to have other health conditions that can worsen the risks of severe COVID-19, which might have convinced parents to delay evaluations until a vaccine was available in 2021, said Rebecca Vaurio, a neuropsychologist at Children's Minnesota.
Children's responded after the end of Minnesota's COVID-19 lockdown in spring 2020 by moving its autism clinic to another office to reduce the infection risks for patients. It also tried a remote assessment by which therapists watched on video as children carried out tasks at home. Vaurio said families returned for evaluations in 2021, and she expects that will be reflected when the next CDC report on autism prevalence in 2022 comes out.
Vaurio said she expects racial and gender disparities will continue to even out as well. The diagnostic criteria for autism are oriented toward males, while females develop social skills at earlier ages that could mask their conditions, she said.
"Girls might have just enough social skills to pass for a little bit longer, leading to those later identifications and later designations," she said. "We're also increasing our awareness of what kinds of things autistic girls do."
The pandemic caused more havoc than just disrupting diagnoses, as children with autism struggled to adapt to special education online and didn't have as many support services available, Wilson said. But she stressed that many problems predated the pandemic.
Legislation this session has proposed emergency post-pandemic grants to support autism providers, but Wilson said expansions are needed so more types of providers can conduct autism evaluations and bill health plans.
"The higher the prevalence numbers go up," she said, "the more compelled we should be to draw upon as many resources and solutions as we can."