Utah autism rate holds steady, is no longer nation's highest

Published: Thursday, March 27 2014 11:05 a.m. MDT

Robert and Margie Walker hold their two children Elena and Matthew, who have autism, in their home in Taylorsville Thursday, March 27, 2014.

Jeffrey D. Allred, Deseret News

SALT LAKE CITY — The rate of autism spectrum disorder in Utah is holding steady, at around 2 percent, a new report says.

The state is no longer leading the nation in prevalence of the developmental disorder, as diagnoses are slightly higher in New Jersey, according to new data from the Autism and Developmental Disabilities Monitoring Project, a program funded by the U.S. Centers for Disease Control and Prevention that releases new numbers every two years.

"The numbers from 2008 are consistent," said Dr. Deborah Bilder, an assistant professor of psychiatry at the University of Utah and one of the principal Utah investigators for the study. "It wasn't a fluke last time. This really is affecting 2 percent of our population."

While the numbers point out the large scope of the issue, drawing attention from lawmakers and other state leaders in charge of planning for future needs, parents of children who have autism take it more personally.

"When we first heard the word 'autism,' we assumed the worst," said Margie Walker, who has two young children on different ends of the autism spectrum. "We assumed our kids would never speak, never play, never have real friends. It was almost like signing a death certificate right then."

But, with early diagnosis and intervention therapies, both Elena, 8, and Matthew, 6, are "doing far better than I ever expected them to be," Walker said.

"Our family is thriving," she said.

Even before the "very obvious" diagnosis for Elena at age 2, and a less-obvious one at age 3 for Matthew, Walker spent a lot of time researching the condition, and putting various therapies into practice.

Each of her children responds differently to different types of treatment, but the goal is much the same as for any child — to help them become well-functioning adults.

Fortunately, Walker said, resources are out there. "It's just getting to them that takes time."

Utah is one of 11 sites involved in the national biennial monitoring program, giving the state an edge in better identifying risk factors and areas for advanced research.

"We now have very accurate information about how this disorder affects our population," Bilder said.

The study, which analyzed educational, medical and treatment records of nearly 24,000 8-year-olds throughout Salt Lake, Davis and Tooele counties, reveals that about 1 in 54 Utah children has been diagnosed on the autism spectrum disorder.

Nationally, the prevalence is 1 in 68 children, according the the CDC report released Thursday. Of the 11 participating sites — including Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Utah and Wisconsin — only New Jersey has a higher prevalence among the participating sites, with 1 in 46 kids diagnosed.

The smallest rate of autism spectrum disorder is in Alabama, where 1 in 175 kids are affected, according to the report.

The CDC study also shows that the disorder is almost five times more common among boys than girls: 1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having autism spectrum disorder than are black or Hispanic children, but the study points out that may be due to a lack of access to diagnostic services among minority communities.

In 2008, Utah had the highest autism spectrum disorder prevalence, with 1 in 47 kids affected. But Bilder said those results are limited because the earlier study included fewer children.

Data also show the average age of diagnosis in the state is around 4 years, 5 months old.

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