PRESTONSBURG — Will Kinzer was a "quiet, happy, good baby," said his mother, Moriah Kinzer. He started talking on schedule, eventually saying words like mama, dada, cookie.
Kinzer said she thought it was cute at first when her son rocked himself side-to-side, looking at nothing in particular.
Those are classic autism symptoms.
When a barrage of tests at the Cincinnati Children's Hospital confirmed autism, Kinzer said, it still shocked her. "You feel like you've lost your child. You lose your hopes and dreams for that child," she said.
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Kinzer and her husband Brandon, who live in Allen, immediately sought out parents of other autistic children
They found Greg and Margaret Wilson, of Prestonsburg, whose son, Mitch, 11, is autistic. The families had each decided to pursue Applied Behavior Analysis, an intensive, one-on-one style of therapy that focuses on developing the things that autistic children lose — mimicry, following directions, communication —and stopping interfering behavior — outbursts, hand-flapping, fixating on objects.
Schools using ABA, the Kinzers found, were hours away and had long waiting lists. If they got into a school in North Carolina or Atlanta, would they split up the family?
That's what the Wilsons had done, enrolling Mitch at Summitt Learning Center, a private school in Atlanta, where Margaret and Mitch now live full-time.
The two families began wondering why they couldn't start a school closer to home. They approached Highlands Regional Medical Center, which almost immediately agreed to help and has since invested more than $1 million in developing a school.
Now the Kinzers, Wilsons and other Kentucky families with autistic children have a new dream: the Highlands Center for Autism, which will be the first school in the state to use the intensive ABA method for autistic kids.
Like any private school, it's not a sure thing for success. ABA schools are incredibly expensive, with tuition as high as $100,000 a year because of the high ratio of staff to students. At Highlands, tuition will be about $60,000, said school director and psychologist Shelli Deskins, and enrollment will start with 10 students.
The Highlands Center, scheduled to open in June in a converted apartment house, is modeled on the Cleveland Clinic's Autism Center, one of the leading ABA programs in the country, which started with six children in 2000 and has grown to more than 100 children this year.
"This is an opportunity for Eastern Kentucky to be a leader in something," Margaret Wilson said.
After Will, now 4, was diagnosed as autistic, the Kinzers started him in speech and occupational therapy a couple of hours a week, while they searched and waited. He started to improve, learning to point and communicate a little.
But that improvement was too slow for the Kinzers. They wanted more.
The Wilsons' son, Mitch, was home-schooled and then attended third and part of fourth grade in public school. But the Wilsons thought he needed ABA.
They sold their Prestonsburg home so Mitch and Margaret could move to Atlanta. Greg Wilson, president of First Commonwealth Bank in Prestonsburg, rents an apartment there, where he lives with their daughter, Lizzie, 13. During the week, he's the best ponytail-making dad on the cheerleading squad. The family is together on weekends.
"We decided we would go to the ends of the Earth if we didn't have a dime left," Margaret Wilson said.
The Wilsons say that in public school, where the one-on-one attention and intensive behavior treatment wasn't available, Mitch lost communication skills he had learned in a home school setting, and his behavior interfered with learning.
With ABA, speech therapy and specialized tools like a letter board to spell words, Mitch asks questions and communicates what he wants.
The Kinzers and the Wilsons were not willing to accept that such treatment was not available to their community.
Public school officials say that, as awareness has grown in the last decade, they have come a long way in teaching children with autism. In Kentucky schools, some special education programs incorporate ABA methods. But no method is a "magic bullet" for everyone, said Eddy Wilder, special education coordinator at the Kentucky Valley Educational Cooperative, which helps 15 public school districts, including Floyd County, train teachers, aides and parents.
Wilder said that 112 students among those 15 districts' 38,000 have the primary disability of autism, and the schools' main focus is on the student's education, not on a particular program or on one parent's or doctor's opinion.
"We have to look first at whether the kid can be in a regular classroom," Wilder said. "We guarantee that right."
A classroom goal
In May 2008, the Wilsons and Kinzers approached Highlands, a non-profit hospital in Prestonsburg, and after an exploratory trip to Cleveland the hospital decided to develop a program modeled after the Cleveland Clinic's Center for Autism.
The hospital has committed to fund the school's operation for the first two years, said hospital president Harold Warman. After that, he hopes funding will come through tuition, donations and charitable giving.
Eventually, Warman said, he hopes the school will grow into a diagnostic and community outreach center, giving families a place to go besides Louisville, Huntington or Cincinnati, and providing support and training to public schools.
The school's high cost will likely mean that kids will come from around the country, not just from Kentucky, where the most insurance coverage required of any provider is $500 a month for an autistic child.
Deskins, a clinical psychologist trained at the University of Kentucky and Auburn University, said it is a dream come true for her to be able to build a center from the ground up and to give Eastern Kentucky families access to evidence-based autism intervention. While an undergraduate at UK, she became a believer in ABA's scientific methods.
"I've seen it work," Des kins said.
No child will be turned away based on behavioral problems, Deskins said.
The Highlands school will have a certified teacher, helping create education plans for students. But the school's focus is behavioral, and the school's one-on-one therapists will come from a variety of disciplines — education, behavior analysis, speech pathology — and will be trained at the Cleveland Clinic.
The school's goal, Deskins said, is to move children into a classroom setting.
That is what the Wilsons want. They dream that Mitch — who now gets behavioral therapy at the Summit Center and neuro-developmental and academic education at another Atlanta school, Jacob's Ladder — will attend Highlands and eventually graduate from a public high school in a "regular" classroom.
"He will be an advocate" for other autistic children, Margaret Wilson said.