I take it for granted how easy it is for me to communicate in the world around me. Our kids don't have that. —Julia Hood, Carmen B. Pingree Autism Center of Learning
SALT LAKE CITY — One in 54 Utah kids has autism — the second highest prevalence in the nation — and 1 in 4 cannot or will not speak.
"A lot of our kids cannot communicate basic wants or needs," said Julia Hood, director of the Carmen B. Pingree Autism Center of Learning, a specialty service of Valley Behavioral Health that serves children with autism across the Wasatch Front up to age 17.
"If they have a stomach ache or a headache, they can't tell you. Sometimes they'll act out behaviorally," she said, adding that some parents don't experience their child's first word until well into the elementary education years, which is a long time to go without knowing how that child feels.
Now the school that has a waiting list of 200 children hopes to increase its ability to help more children and soon provide an in-home treatment service where parents can learn how to provide help to their autistic children.
"They struggle to communicate and understand the nonverbal cues we use as a majority of our communication," Hood said, adding that she's been told, "it is so frustrating to not understand social norms and not be understood, but appear 'normal' (on the outside)."
Autism spectrum disorders affect a person's ability to effectively interact and communicate in social situations, and are also manifest through repetitive, restrictive and stereotyped behaviors and interests. The neurodevelopmental disorder presents differently in each child who is diagnosed, making the individual treatment that the Pingree Center offers imperative.
And the school hopes to make that crucial interventional education even more impactful by placing an iPad, equipped with various and specific learning applications, in each of its 160 students' hands.
The lofty but potentially life-changing campaign has amassed more than $12,600, but it needs almost six times that to help children and their families, school officials said.
Pingree needs $75,000 to supply more than a hundred additional devices and protective, indestructible cases, and other technologies to its students.
"Even if they're verbal and maybe appear to be able to communicate better, they really struggle to communicate effectively," Hood said.
The Pingree Center employs a ratio of staff, including five teachers, assistants and aides, to every 10 students to give children more individual support. It focuses on individual learning styles to provide interventional treatment called applied behavioral analysis, a proven method of providing autistic children with the skills they need to progress.
The younger it is applied, the better the outcomes can be, according to research on the method.
Most children are diagnosed with the disorder between the ages of 2 and 4 — a critical developmental time period during which social, behavioral and educational skills are learned. While autism is a lifelong disorder, Hood said intervention is most effective when it is done before age 6.
Children with autism who don't have access to the beneficial treatment can still make gains, but their progress is slower and may not have the same long-term effects, such as higher intelligence quotients, higher language functioning and better adaptability.
Many of the children served at the Pingree Autism Center transition to traditional schools without major problems. Some require ongoing support, smaller classes or special education within Utah's public school system.
Additional programs, including private and charter school options, are available in the state, but Pingree remains the most popular option for parents, some of whom don't necessarily enjoy seeing their kids transition to traditional schools because they witness so much progress at the Pingree Center, Hood said.
Parents of children on the waiting list are given a list of resources they can pursue prior to admission at the center, as well as preschool options available through the public school districts throughout the state. Pingree also hosts parent education nights that provide information and training to parents of autistic children, to help them better deal with the issues they might face.
Hood said she hopes the in-home program is available this fall to help more children develop the skills they need to succeed.
"The gains you see are priceless," she said. "It's what makes everything we do so worth it."
The intensive intervention provided at Pingree, Hood added, propels even quicker results.
"Seeing a child go from being completely nonverbal to speaking is life-changing," she said. "It's huge."
Research involving autism is ongoing and Hood said a lot of it, including the narrowing down of genetic susceptibility and possible environmental triggers, is promising. The research, however, is costly, as well.
"They are getting closer to identifying possible causes and that helps to build more effective intervention principles," Hood said.
April is nationally recognized as Autism Awareness month, and Hood hopes Utah communities will reach out to the Pingree Autism Center, located at 780 Guardsman Way in Salt Lake City, with donations to help treat and educate more Utah children with autism spectrum disorder. The school is also hosting various events throughout the month to increase awareness of the disorder and how it can be treated.
"I take it for granted how easy it is for me to communicate in the world around me," Hood said. "Our kids don't have that."
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