They (parents) know the treatments (that are) shown to work. They don't know the path to get there —Mirella Peterson
SALT LAKE CITY — In Utah, one in 47 children has autism, the highest rate among 14 communities nationwide, according to a newly released study.
The results from 2008 data, released Thursday, found autism rates jumped 157 percent in Utah from 2002 to 2008. Meanwhile, the prevalence of autism increased 78 percent nationwide over the same time period, according to the U.S. Centers for Disease Control and Prevention study.
Nationally, an estimated 1 in 88 U.S. children has autism, an all-time high, the study found. The findings were released Thursday during a briefing at Valley Mental Health's Carmen B. Pingree Center.
Mirella Peterson, a mother of three sons, one of whom has been diagnosed with an autism spectrum disorder or ASD, said study results are a clarion call to policymakers and elected officials.
"We also need to see a simultaneous increase in access to treatment," said Peterson, president of the Utah Autism Coalition.
While medical research has not determined the cause of autism, Peterson said there are a number of proven, evidence-based treatments to help children with ASD diagnoses, which are developmental disorders characterized by impairments in social interaction, communication and/or repetitive, restricted and stereotyped patterns of behavior.
"They (parents) know the treatments (that are) shown to work. They don't know the path to get there," she said.
Judith Pinborough-Zimmerman, the study's Utah principal investigator and assistant professor of psychiatry at the University of Utah, said more research is needed to understand the growing prevalence of autism spectrum disorders in Utah and nationwide.
According to the study, the disorder occurs in Utah boys at a rate of nearly three times that of Utah girls. The study also found significantly higher autism rates among white Utah children when compared to non-white children, among whom the rate is 1 in 154. For white children, the rate is 1 in 25.
"Regardless of the reasons for the changes reported in this study, increases of this magnitude will have a significant long-term impact on our communities and families. As researchers, we are continuing to work with our local and national partners to find answers," Pinborough-Zimmerman said.
For Christine Passey of Salt Lake, whose daughter Skylynn has been diagnosed with autism, said "the only honest answer" to solving the problem of accessing treatment is an insurance mandate for the coverage of autism services. Twenty nine states have established the requirement, she said.
While some services are available through schools or community programs, most Utah families are left to make significant financial sacrifices to pay for services out of pocket.
It is not unusual, Passey said, to meet parents who have sold homes or cars to free up resources for autism services.
"I can't tell you how many times I've cried myself to sleep thinking about this. There are these services, if we could get to them, would probably change her life," Passey said.
But her family is middle class. Insurance won't pay for autism services and they don't qualify for Medicaid. Because her preschool-age daughter Skylynn has an autism diagnosis, their insurance company has even rejected claims for routine well-child visits on occasion.
In September 2011, Skylynn finally moved up the waiting list at the Pingree Center, where her communication skills have progressed to the point that she can verbalize her "wants."
With prompting, she can say, "I want a cupcake, please," Passey said.
It was a huge milestone for the 4-year-old, Passey said. "It's amazing to know what she wants."
As for study findings, Passey said when she heard the latest statistics — particularly the sharp uptick in the estimated rates of autism, "I just wanted to cry for the families when they got the diagnosis. When you first get this diagnosis it's devastating."
David Patton, executive director of the Utah Department of Health, said he is well aware of the frustrations that families feel. However, the new numbers should help to inform the debate and guide the public response.
"We hope the updated numbers will help communities to better plan for the supports and services families will need. And we'll keep working with our partners to search for risk factors for ASDs, as well as treatments and therapies to help these children achieve their full potential," he said.
Peter Nicholas, director of the Pingree Center, said he's "scared" by the new numbers released Thursday. There are now 150-200 children on the waiting list for the center's preschool program.
Statistics are one thing, Passey said. The bottom line is, "unless Skylynn gets the services she needs, she will live with us forever," she said.
Passey said she will stand by her daughter in any event, but she wants her to have the services that help her reach her potential.
"I want her to live whatever her dreams are."