LEXINGTON, Ky. (March 8, 2017) — Amy Hall celebrated her son’s first haircut appointment and the moment her daughter permitted a hug. For parents of children with autism spectrum disorders, even small gestures and slight behavioral changes count as developmental breakthroughs.
Hall’s son Jacob, who was diagnosed with an autism spectrum disorder at age 2, once spiraled into emotional outbursts when anyone tried to touch his hair. Hall and behavioral therapists at the Highlands Center for Autism in Prestonsburg, Kentucky, rehearsed Jacob’s first visit to the barbershop. Every day for several weeks, Jacob practiced getting his hair washed in a bathtub at the school. He took a field trip to the barbershop and climbed into the barber’s chair. He even had the chance to inspect the barber’s combs and shears before the big day.
Maggie, Hall's second child, was diagnosed with an autism disorder at 19 months. She went through a stage avoiding touch, even embraces from her parents. Early intervention and repetitive behavioral training helped Maggie overcome her fear and warm up to cuddling with her parents.
“I think of how difficult some of those months were for us, and how far they’ve come,” Hall said.
After Jacob was diagnosed in 2011, Hall applied for a scholarship at the Highlands Center for Autism in Prestonsburg, Kentucky, the only developmental learning program east of Louisville in Kentucky based on Applied Behavioral Analysis (ABA). ABA is a scientifically proven method for teaching children basic and complex communication skills, social skills and other skills needed for an independent life. Upon receiving a scholarship in December, Hall relocated with the children to Floyd County, moving in with her in-laws, while her husband remained in Lexington to continue his work. Less than two years later, Maggie received a scholarship to enter the program. In addition to spending the weekdays apart from her husband, Hall drove her children three hours both ways to Cincinnati for appointments with a pediatric developmental-behavioral specialist. Managing her two children’s complex medical and developmental needs became a lot easier when Dr. Daniel Larrow, a pediatric developmental-behavioral specialist at UK HealthCare, introduced a telemedicine clinic for families and patients at the Highlands Center.
“Having Dr. Larrow there was so convenient,” Hall said. “The kids are comfortable and they are in a familiar setting. He could very clearly see some of the behaviors and concerns that we were experiencing.”
Larrow, a Kentucky Children’s Hospital pediatrician who specializes in developmental-behavioral pediatrics, first observed the Hall children’s behavioral challenges through a computer monitor at the Kentucky Clinic. The live telemedicine consultation provided a comfortable introduction to Larrow and KCH family support specialist and patient navigator Melanie Tyner-Wilson, a mother of an adult child with an autism spectrum disorder. The online meetings allow Larrow to gather information about a child’s history and developmental barriers and recommend further testing at the center, if needed, before examining the children in-person. He and Tyner-Wilson travel to Prestonsburg once a month to provide clinical consultations with established families whose children attend the Highlands Center, as well as other children and their families from Eastern Kentucky. During the on-site consultation, Larrow observes behavior and offers medical recommendations. He focuses attention to environmental modifications proven effective in helping children overcome behavioral barriers.
“The treatment for autism and other neurodevelopmental disorders is mostly specialized instruction, the teaching of specific skills that should be present but that aren’t, or to replace bad behavior with more acceptable behavior,” Larrow said. “A lot of times the parents don’t know how to access it or find this specialized therapy, or how to get insurance to pay for it.”
Larrow came to Kentucky Children’s Hospital in 2013 after working for an organization that operated three developmental schools for autistic children in rural Vermont. A proponent of early behavioral intervention, Larrow urges families he sees in clinic to integrate consistent behavioral learning into their children’s daily lives. Based on current recommendations, preschool-age children should receive more than 25 hours a week of intensive, individualized year-round instruction to maximize progress in behavioral development. However, often children receive only one hour of language or occupational therapy a week.
Through many years working with children on the autism spectrum, Larrow adopted a practice philosophy emphasizing control and conditioning of the environment to prompt positive behavioral development. Larrow’s approach likens children on the autism spectrum to orchids as opposed to dandelions, or their normally developing counterparts. While most children are developmentally conditioned to adapt to their environment, children with an autism spectrum disorder, like fickle orchids, are not adaptable and need a special environment, or “greenhouse.” The orchid theory holds that children on the autism spectrum can flourish when their environment is best suited to their developmental and learning abilities. As orchids, these children must also be taught to function in the "dandelion world."
“If you can figure out the right greenhouse for an orchid, they can thrive and potentially excel,” Larrow said. “If they are not in the right environment, they don’t do well.”
But ensuring autistic children are situated in environments that foster growth and development demands an extra effort for families living in rural areas. Practicing in rural Vermont and Kentucky, Larrow has observed a scarcity of resources and intensive, day-to-day therapy available to children with an autism diagnosis. But the Highlands Center in Prestonsburg, championed by the community, is one exception. Families travel from across the region and out of state seeking ABA therapy for their children at the Highlands Center. With the Highlands Center partnership, Larrow is able to hear parent concerns and offer therapeutic recommendations through the telemedicine clinic as well as conduct a more thorough assessment on his monthly in-person visits. This system of care also allows Larrow and Melanie to seek local treatment options.
Tyner-Wilson assists Larrow by counseling parents through the daily challenges, frustrations and uncertainties of raising a child with an autism diagnosis. Larrow and Tyner-Wilson talk to parents about constructive responses to behavioral problems, such as how to get a child to sleep at night, responding to aggressive outbursts or pacifying a child during a sensory overload. They help parents distinguish between normal challenging childhood behavior and behavior attributed to a neurodevelopmental disorder. Tyner-Wilson said forming a supportive network of peers, medical providers, counselors, therapists, and teachers around families can empower them to persevere through behavioral struggles and celebrate their child’s developmental breakthroughs. Connecting with other caregivers through a support group either in person, online or through social media can decrease the feelings of isolation that so frequently occurs.
“It’s a unique journey that each caregiver travels as each child can be so different,” Tyner-Wilson said. “If you have met one child with autism, you have met one child with autism. Each child has his or her own specific strengths and challenges to discover. It can be an invisible disability.”
Tyner-Wilson said Larrow’s orchid metaphor transforms how parents think about their child’s disorder. Larrow encourages caregivers to immerse their children in nurturing learning environments with consistent practices, adjusting the child’s environment to find a formula that promotes positive development. Tyner-Wilson and Larrow instruct families to adopt techniques, exercises and responses to behavior that will produce future results.
“When you hear him call their child an orchid, you can see a change in their faces as it’s a potential positive for them,” Tyner-Wilson said. “Your child has these needs and has challenging behaviors, and, yes, they need special support, but with the right greenhouse, the child can become an opportunity, not a problem.”
Ashley Ratliff, director of the Highlands Clinic, said the telemedicine arrangement with Dr. Larrow provides families with a level of clinical expertise that isn’t accessible in rural areas. Their availability eliminates the burden of travel for families already struggling to find resources and opportunities to foster behavioral development.
“They are providing a service in this area that prevents families from having to drive all the way to Lexington or farther away,” Ratliff said. “When you talk about long-distance transportation with a child with autism, it can be very difficult for parents to manage. Dr. Larrow and Melanie are providing a necessary service in this area, and I think the arrangement is a win-win.”
Amy Hall can attest to the advantages of adjusting the environments to accommodate her children’s behavioral challenges. After making significant progress at the Highlands Center, the family returned to Lexington in 2015. Both children see Larrow at the Kentucky Clinic and receive routine behavioral therapy at separate programs in Lexington. Jacob recently completed his first season playing on a Miracle League baseball team and Maggie, who will begin kindergarten this fall, participates in the Chance to Dance program. Amy Hall believes early intervention and consistency in therapeutic approaches led to significant developmental progress for her children.
“We recognize our life is not typical, not normal, but we feel like in a lot of ways we get to celebrate more,” Hall said. “We get more happiness out of little things we would have taken for granted.”
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