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SALT LAKE CITY — Graduating from high school can be momentous for any teenager, but for many with special needs, specifically autism, the milestone is called "the cliff" for a reason.
"It's what parents call that time when their special-needs kids age out of school, leaving all the supportive services families have come to rely on," said Julia Hood, director at the Carmen B. Pingree Autism Center of Learning.
The uprooting used to happen at the end of elementary school, Hood said, but available services and resources have come a long way.
"And there's still a long way to go," she said, adding that the long-term plan is to provide services for people with autism "from birth to death."
Pingree soon will open an expansion to assist more adolescents with autism — tripling enrollment to serve up to 30 students ages 13 to 18.
The step is a big one for Carson Smith, who has spent his entire educational life at the school.
"This is like their high school," said Carson's mother, Cheryl Smith, for whom the new annex is named. "They don't want to be with little kids. They want to be with kids their own age and doing things kids their age do."
The research-based individual interventions provided at Pingree have made a difference for many students who have successfully transitioned to traditional neighborhood schools, but especially for Carson.
Now 18, Carson said his first word around age 10 while he was participating in a school activity. The entire school celebrated the milestone.
"I don't know where I'd be without them," Smith said, fighting back tears. She expects her son, who is severely affected by autism, will be at Pingree "until they have to kick him out."
But she's working with the school, which is a service of Valley Behavioral Health, to further expand support services for families dealing with autism well into adulthood.
"I don't want him making macaroni necklaces. I want him working on stuff that will help him in his life," she said.
Smith isn't a stranger to activism, having pushed for the Carson Smith Scholarship that now serves hundreds of families with special-needs children throughout the state. She also manages a support group of Utah moms with kids who have autism.
"I get the passion from my kid. He's the fire in my belly," she said. "He can't speak for himself, so I feel I need to speak for him."
It all began out of "sheer desperation," Smith said, as Carson, who was diagnosed around age 3, was "one of the lucky ones" to be selected for the Pingree school. But "there was no way we'd be able to afford the tuition," she said.
"Everybody deserves the best shot at the best quality of life," Smith said, adding that every mother's worry is how their kids will fare when she is no longer living and able to care for them.
This is where she believes the prevocational skills taught in the adolescent program at Pingree will come in handy.
"The more independence skills that I give him, the better off he's going to be when I'm gone," Smith said. "If he can make his own bed, change his own clothes and wipe his own bum, I feel like he'll be OK."
And the kids have been asking for a high school experience for a long time, including a request for lockers in their new classrooms to make it more authentic.
The facility houses three classrooms, complete with out-of-sight observation areas for parents and researchers to check in on occasion. But it also has a washer and dryer, a vocational room to finish folding and hanging laundry, as well as implement other skills, and a kitchen where students can prepare their own meals. It also has a room with a couch and a television, where participants in the program can better learn to interact.
"Teenagers with autism don't hang out the way other individuals do," Hood said. "They often struggle with social relationships."
The expansion, built with a one-time appropriation of $500,000 from Utah lawmakers, aims to give these teens new opportunities.
"Things a lot of us take for granted, many of them have yet to learn and do for themselves," Hood said.
The Pingree school accepts applications twice a year and carefully screens kids based on their need for intensive intervention and treatment for autism and associated disorders. School staff aims to help children be successful in the "least restrictive setting as possible," Hood said, and students are transitioned to public schools as soon as they are capable.
Children with autism need peer interactions and peer role models as much as any kid, Hood said, and they can only get that in a public school setting. Transitioning them when appropriate also helps the children become less reliant on the higher levels of services provided at Pingree.
"We want to set them up to be successful in a real-world setting or any setting they would encounter," Hood said, adding that staff is always happy to hear students are doing well outside of the specialized treatment center.
Carson, however, "is not one of those kids who is going to make it in public schools," his mother said.
"He's 98 percent teddy bear and 2 percent tiger. You just don't know when you're going to get the tiger," Smith said, adding that her son has topped 300 pounds and has other health issues that make his case very complicated.
Doctors have suggested institutionalizing him, but she knows he's capable of more.
"He's made us all better people," Smith said, adding that she knows her son is smart and will continue learning throughout his life.
At any given time, Pingree educates about 80 preschoolers. The numbers dwindle as kids get what they need and move on. The school has about 30 kindergartners and even fewer in the older grades.
Until now, the program has allowed for 10 adolescents, but the need in the community has always been greater, as the school has a continuous wait list of up to 200 students of all ages.
The trouble is, after high school, people with autism end up living with their parents or grandparents, and their quality of life decreases dramatically. Not many are able to secure jobs or anything that keeps their interest, leading them to become isolated and alone.
"Families don't know what to do," Hood said.
Giving them the daily living skills they need, as well as exposure to many of life's circumstances — the center also partners with Utah's Hogle Zoo, which allows adolescent students to learn and volunteer at animal exhibits — will hopefully give them a better chance at success later in life.
"It's a human right to feel like you're contributing to society," Hood said. "Everyone needs to have that, and while it is different for everybody and varies in intensity, everyone needs it."
