Annie Campbell says a state-funded autism preschool changed her son's life. At age 6, Jackson can now speak in sentences, throws fewer temper tantrums and can handle eating in restaurants.
But the school, Giant Steps in Orem, could close at the end of the year or even earlier, along with three others in Salt Lake City, Ogden and rural Utah that collectively teach 200 children. The $1.9 million program -- and others that help Utah's autistic children -- have been targeted for cuts, as lawmakers try to slice $400 million from this year's state budget and $800 million from next year's figures.
Utah has one of the highest rates of autism in the country, with 1 in 133 children affected. Other services at risk include private school scholarships and a state autism registry.
Gov. Jon Huntsman Jr. proposes a smaller cut, which would preserve the preschools for another year.
If the preschools are axed, autistic youngsters would still get services through special-education preschools at public schools, which cannot turn children away. But Campbell and others say those schools, with more students and fewer instructors, aren't as good.
She transferred Jackson from a public school to Giant Steps as soon as she could. He now splits time between a mainstream first grade and an autism unit. Now her daughter, Lucie, 4, is enrolled at Giant Steps and she is "horrified" at the prospect of closing it.
The public school preschool "didn't have high expectations of the kids," Campbell said. If her son had stayed, "the best we could have sought for him is working at McDonald's. He's highly intelligent. He should go to college."
With a waiting list of 228 children, as of the summer, the four preschools also provide mental-health services to students and train families. The state says about half the children are able to enroll in traditional classrooms by first grade. Students gain an average of 16 months of language, cognition and social skills in nine months of school.
"It's really going to impact lives in a really dramatic way if these services aren't available to them," said Chris Kupfer, a special-education specialist for the Southwest Educational Development Center, which provides preschool autism services to six rural school districts.
Kupfer said the districts, except Washington, do not provide other autism services. They won't have the money to make up the cuts, he said.
"If these programs don't exist here, parents and families are faced with two alternatives: relocating or going without the services that are really necessary and appropriate for them," he said.
Parents and teachers have an ally in Sen. Howard Stephenson, R-Draper, who sponsored the original bill funding the preschools and calls the proposed cut "penny-wise and pound-foolish."
The Autism Society of America estimates that early diagnosis and intervention can reduce by two-thirds the $5 million lifetime care costs for one child with autism.
Despite the dire budget, Stephenson plans to run his bill requiring private insurers to cover proven autism therapy, which can cost up to $50,000 a year. Fiscal analysts are assessing the cost to premium payers.
"We're determined to make this happen," he said. "These children can't wait."
Cheryl Smith has been urging parents to call lawmakers to preserve autism programs, including Carson Smith scholarships, named after her autistic son. Lawmakers could cut up to 100 scholarships, out of about 500, to save $375,000.
"These kind of programs mean the difference between success and defeat, getting our child to enter our world," Smith said.
Legislative fiscal analysts have targeted the Utah Registry of Autism as an "optional cut" that would save $150,000 a year.
Originally funded by the federal government and preserved by the Legislature last year, it established that Utah has the third-highest rate of autism in 14 sites studied by the Centers for Disease Control and Prevention.
The registry aims to continue screening medical and educational records of 4-, 6- and 8-year-olds for autism and other developmental delays. It's matching those records with others to find possible causes of autism.
"If you don't know who the kids are, you can't look at potential causes," said Judith Zimmerman, the registry's coordinator.
Researchers are currently studying a possible link with air pollution. And a study slated for the May issue of Pediatrics found a limited connection between breech presentation at birth and autism, said author and child psychiatrist Deborah Bilder. Some children with autism may have neuromuscular abnormalities that also prevent them from entering the birth canal headfirst, she said.
Carmen B. Pingree Center for Children with Autism, Salt Lake City
Giant Steps, Orem
Northern Utah Autism Program, Ogden
Southwest Educational Development Center, Millard, Beaver, Garfield, Kane, Iron and Washington counties.