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, Ky., 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.
Hall credits much of her children’s progress to an intervention spearheaded by UK pediatrician Dr. Daniel Larrow. Through an innovative telemedicine clinic, Larrow and his team at the Kentucky Children’s Hospital give kids like Jacob and Maggie access to the specialized care they need, no matter where they live. Larrow meets with patients and their families via a live telemedicine consultation and offers advice and guidance for overcoming behavioral challenges.
“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.”
Removing barriers to clinical expertise
After Jacob was diagnosed in 2011, Hall had applied for a scholarship at the Highlands Center, the only developmental learning program east of Louisville in the state 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.
After Jacob received the scholarship, Hall had 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 had to drive her children three hours both ways to Cincinnati for appointments with a pediatric developmental-behavioral specialist.
It wasn’t until Larrow introduced the telemedicine clinic in partnership with the Highlands Center that things became easier, Hall said.
Larrow, who specializes in developmental-behavioral pediatrics, first observed the Hall children’s behavioral challenges through a computer monitor at the Kentucky Clinic. The telemedicine consultation provided the Hall family 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.
“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.”
Building a ‘greenhouse’
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.Through many years working with children on the autism spectrum, Larrow adopted a practice philosophy emphasizing control and conditioning of the environment to promote 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.”
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.
“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.”
‘Happiness out of little things’
Ashley Ratliff, director of the Highlands Clinic, said the telemedicine arrangement with 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.”
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.
“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.”
- Using state-of-the-art techniques and testing, the team at UK Developmental & Behavioral Pediatrics provides comprehensive treatment for kids with developmental concerns. Learn more about our clinic.
- For parents of a child with autism spectrum disorder, having a strong support system can make a world of difference. Check out these autism spectrum disorder support resources for families.