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.
"We want to get as close to 2 years old as possible," Bilder said. "The younger we identify these children, the sooner we can get them into intervention, the more response they're going to get from the intervention, and the better prepared they're going to be for school and all sorts of areas of functioning."
According to the study, less than half of Utah children with autism spectrum disorder were identified by health providers and educators by age 4, although a diagnosis can be made in children as young as 2.
Parents are encouraged to act early and follow their intuition, seeking help from qualified physicians and educators.
"So many alarms set off with my daughter," Walker said.
"She was not making eye contact, not hugging or showing those emotions. She was lining up her toys instead of playing with them. She was not socializing or playing with other kids," Walker said, adding that she only knew the symptoms after having done much research on her own.
Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability. The study found that almost half of children identified with autism spectrum disorder have average or above average intellectual ability (an IQ above 85), compared to a third of children a decade ago.
"Community leaders, health professionals, educators and child care providers should use these data to ensure children with autism spectrum disorders are identified as early as possible and connected to the services they need," said Coleen Boyle, director of the CDC's National Center on Birth Defects and Developmental Disabilities, which oversees publication of the report.
"More needs to be done to identify children with autism sooner," she said. "Early identification is the most powerful tool we have right now to make a difference in the lives of children with autism."
Walker said early diagnoses for her children have helped them progress in unimaginable ways — teaching Elena American Sign Language to communicate in the beginning, and giving Matthew help to learn speaking and crawling, because he suffered some physical setbacks at a very young age.
Elena was also admitted early to a special education preschool, in hopes that it would help. Walker said it has helped "leaps and bounds."
"You can barely tell (Matthew) has an autism spectrum disorder now. His progress has been tremendous," she said, adding that helping both children be successful has been "a long, hard haul."
Walker and her husband decided to focus on the needs of their two kids and not pursue the larger family they had once wanted, but she's grateful. "I really feel like we're on the other side now, that we've gotten through the worst of it."
The biggest hurdle, Walker said, is finding the one thing that helps, which is different for every child.
"Looking back at it now, it was all worth it," she said. "All children are worth it. They are our children and they need us."