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Utah experts explain why autism appears to be on the rise


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SALT LAKE CITY — New data show that 1 in 45 children in the U.S. is diagnosed with an autism spectrum disorder, a large jump from previous estimates and one that brings Utah closer to the national average.

"It sounds right," said Deborah Bilder, an associate professor of psychiatry at the University of Utah and the medical director of the Neurobehavior HOME program. "One in 45 sounds right to me."

According to the report from the National Center for Health Statistics, housed within the Centers for Disease Control and Prevention, 2.24 percent of children in the U.S. have an autism spectrum disorder.

The new figures seem to show that the prevalence of autism is on the rise, because the center's most recent estimate was 1 in 68 children, or about 1.25 percent, based on 2011-13 data.

But the report's authors and local experts say the jump is likely due to changes in survey methodology and underreporting in previous years.

Increased awareness


Bilder said that after years of surveys reporting sometimes vastly different estimates of the autism prevalence rate, many are stabilizing around a rate of about 2 percent.

Teresa Cardon, director of the Melisa Nellesen Autism Center at Utah Valley University, agreed and pointed out that the new survey methods likely contributed to the large jump in reported autism diagnoses, something the authors of the report also detailed.

The report's findings were culled from detailed surveys of thousands of parents who were asked if their children had ever received a diagnosis of autism.

Previously, the survey included autism spectrum disorder as one option among a checklist of developmental delays.

The new survey asks about autism spectrum disorder in a stand-alone question, before asking about other developmental delays.

(Photo: Aaron Thorup, CDC/NCHS, National Health Interview Survey, 1997–2014. )
(Photo: Aaron Thorup, CDC/NCHS, National Health Interview Survey, 1997–2014. )

Cardon said some researchers suspected parents might have been classifying their child's disorder as a developmental delay rather than autism. The new survey seems to provide evidence for that. While the prevalence of autism spectrum disorder jumped, the prevalence of other developmental delays decreased.

Cardon also added that as people become more aware of autism, the number of autism diagnoses will naturally increase over time.

"Doctors are more aware, families are more aware, communities are more aware. Parents are now feeling a little less stigmatized to say, 'Yes, my child has an autism diagnosis,'" Cardon said. "There's a combination of things that seem to have contributed to the 1 in 45 number being different than in previous years."

The data also aligns Utah, which has alternated with New Jersey in past years as the state with the highest autism rate, closer to the national average.

Autism in Utah

In 2012, the CDC reported that 1 in 47 children in Utah had an autism diagnosis, the highest rate in the country out of 14 states surveyed. Nationally, they reported the rate was 1 in 88 children.

Then an update last year showed that the Utah figures were closer to 1 in 54 children, with a national average of 1 in 68 children.

For Cheryl Smith, past president of the Autism Council of Utah, the procession of reports provokes complex feelings.

Smith, who is raising a 17-year-old son with autism, said she appreciates autism research but often struggles with the onslaught of data, which offer varying and sometimes conflicting theories on what causes autism and how common it is.

"They keep coming out with new data, new studies," Smith said. "'Oh, Utah's not No. 1; now we're No. 2. Now we're No. 3.'"

Smith said her focus isn't on the numbers but on finding resources and services for her son. Programs for older teens or young adults with autism are woefully lacking, according to Smith, even as a "tsunami" of children with autism prepare to age out of school-provided services.

"The trajectory is always up," she said. "We need to focus on what we do about it."

Contributing: Peter Samore

Daphne Chen is a reporter for the Deseret News and Contact her at


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