Beyond the Walls

Brittanie and Adrian Doaks and their 2-year-old son, Kingston, sat in front of a computer in their hometown of Jackson, Tennessee, for a videoconference that connected them with a pediatric psychologist and autism specialist two hours away in Nashville. They were hoping for answers.

Kingston, extremely active from 9 months old, was advanced physically, but his verbal abilities lagged. At age 2, he had only three words in his vocabulary — momma, daddy and ball. Initially, he was diagnosed with a speech delay, but there were other concerns as well. He had difficulty sleeping, and engaging with his peers was a challenge for him. While he showed great affection toward his parents, siblings and grandmother, he was often socially withdrawn and would become very agitated around strangers.

“We felt like something else was going on with Kingston, but we didn’t want to think that it was autism,” Brittanie said. “He’s extremely affectionate and we always got good feedback on his behavior from his teachers at day care.”

The Doakses decided to pursue an autism evaluation for their son. Following the screening, Kingston, who has since turned 3, was diagnosed with autism spectrum disorder (ASD).

ASD is an umbrella term that encompasses several different neurodevelopmental disorders. According to the U.S. Centers for Disease Control and Prevention (CDC), ASD impacts one in 68 children.

“You’re never prepared for the initial shock of receiving news like this,” Brittanie said. “As a parent, you want things to be easy for your kids and you want great things for them, so hearing there’s something that’s going to make his life more challenging just knocked the wind out of me. But then, Dr. (Jeffrey) Hine (who did the evaluation) said something I’ll never forget. He said, ‘Kingston’s diagnosis doesn’t change who he is, and he’s no different than who he was when he walked in this room. He’s just going to learn a bit differently.’”

Currently, in many parts of Tennessee, there are not enough local providers to conduct autism evaluations and diagnoses for young children. As is often the case, the Doaks family was referred to the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD).

For more than two decades, TRIAD professionals have had a close partnership with the Department of Pediatrics and the Division of Developmental Medicine at Monroe Carell Jr. Children’s Hospital at Vanderbilt and have been providing evaluations for families when there are early concerns for autism.

Over that same interval, the demand for such evaluations has increased dramatically as community and provider knowledge about autism has expanded. Yet, in many parts of the country, the demand for services is so great that families often wait more than six to 12 months for an evaluation by specialists.

To meet this tremendous need in Tennessee, the Vanderbilt Kennedy Center (VKC) and Children’s Hospital have been building their capacity in communities throughout the region and creating outreach services to ensure that children receive evaluations, an autism diagnosis if appropriate and services in a timely manner.

“When early intervention is the key, can you imagine what it must be like to be told to wait months or a year for answers and help?” said Zachary Warren, PhD, associate professor of Pediatrics, Psychiatry and Behavioral Sciences and Special Education and executive director of TRIAD.

“We may not have all the answers or solutions we’d like to have for parents and children with autism, but there are some places where, if we think beyond the walls, we can truly make a difference for the kids we care for.”

Telehealth initiatives, which use telecommunications technologies to support long-distance clinical healthcare and health-related education, are part of that beyond-the-walls strategy. Additionally, TRIAD is providing training for educators in schools and equipping local organizations with the tools to better meet the needs of these children and families.

“With the prevalence of autism on the rise, the need for early identification and treatment of young children with ASD represents a pressing public health and clinical care challenge,” Warren said.

“Evidence demonstrates that very young children with ASD receiving early behavioral intervention services demonstrate substantial gains in functioning. Although early diagnosis of ASD is possible in the first years of life, children from traditionally underserved communities are often not identified until much later ages. Using telehealth to diagnose and treat autism has enabled TRIAD to reach families quickly and in their own backyards, rather than requiring them to travel long distances.”

 

Diagnosing via telehealth

The Doaks family is one of 70 families who have worked with TRIAD via telehealth since the inception of this program in 2016.

Their journey began around his first birthday, when Kingston had only said “momma,” causing concern for Brittanie and her husband, Adrian, who both work in the education field. The couple expressed concerns about their son’s development to his pediatrician, who initially thought that Kingston’s history of ear infections could have caused some hearing impairment.

Kingston got ear tubes to help with his infections and also started speech therapy. But still his vocabulary remained limited, and he began working with Tennessee’s Early Intervention System (TEIS), a voluntary educational program for families with children through age 2 with disabilities or developmental delays.

Through working with TEIS, the Doakses were told that if autism was suspected, they needed to pursue an evaluation as soon as possible.

Instead of driving two hours from their home for an on-site evaluation in Nashville, the Doakses were able to go to Children’s Hospital’s specialty clinic at Ayers Children’s Medical Center in Jackson, Tennessee. Ayers Children’s is part of the Vanderbilt Health Affiliated Network, a physician-led network of doctors, regional health systems and other healthcare providers focused on improving the health of communities in the region.

They met in the Jackson clinic with Mary Fleck, MEd, BCBA, a TRIAD educational consultant based in the area, and an autism specialist based at Vanderbilt joined them remotely for Kingston’s evaluation.

Jeffrey Hine, PhD, BCBA, assistant professor of Pediatrics in the Division of Developmental Medicine and one of TRIAD’s licensed psychologists who oversees these telehealth autism evaluations, was on the other end of the camera. He and a local team member from TRIAD led Kingston through a standardized play assessment — the STAT — the Screening Tool for Autism in Toddlers and Young Children — which is an interactive measure developed to screen for autism in children between 24 and 36 months of age.

The assessment involved a series of structured play tests geared explicitly for young children. By playing with things like bubbles and balloons and offering them snacks, clinicians are able to critically evaluate key social communication and play skills that are often areas of concern for young children with autism.

At the end of the screening, the Doaks family received answers from a Vanderbilt expert and an action plan for getting Kingston the help he needs.

TRIAD researchers have documented that this rapid action tele-assessment has helped 85 percent of families get definitive information without having to wait or travel to Vanderbilt. This same research has documented a high level of accuracy of this assessment, with over 75 percent of cases of ASD accurately identified via telehealth.

“We are confident that diagnosis through telemedicine is a valid method of assessment, and if there are concerns raised by the families being served or by the psychologists conducting the assessments, we have the option of bringing in the families for in-person visits,” said Alacia Stainbrook, PhD, BCBA, TRIAD Early Intervention program coordinator and assistant in Pediatrics. “However, satisfaction levels have been high, and we are thrilled to be able to see more families, especially in West Tennessee, where 60 percent of the families we see would not have had the capacity to travel to Nashville for a diagnosis. That means their children likely would have gone unidentified until they entered school.”

 

In-home training and assistance

Following Kingston’s diagnosis, Fleck conducted in-home training and support for the Doaks family once a week for six weeks. She also connected them with educational resources and autism peer groups in order to help Brittanie and Adrian navigate their son’s new diagnosis.

“Mary has been so sweet and willing to help, and having a person like her, especially so soon after the diagnosis, was very comforting,” Brittanie said.

Acquiring an early diagnosis before age 3 enabled Kingston to start public preschool in August and made him eligible for speech therapy and occupational therapy through state programming.

Brittanie says her son has made great strides in the time since his diagnosis. He went from saying only three words at age 2 to being conversational a year later, and he demonstrates a higher level of comfort in social situations. He also loves running, swimming, playing outside and reading books.

“We’ve accomplished so much since his diagnosis, and if we’d had to wait a long time for an evaluation, who knows where we’d be,” Brittanie said. “A lot of parents are looking for an answer, and in our area there is no one who can give that, so you’re very limited to who you can see or where you can go. [The TRIAD telehealth evaluation] was so easy for us and a seamless process.”

The Doaks family has also participated in TRIAD’s Families First Program, which offers free workshops at the Vanderbilt Kennedy Center and via livestream to caregivers of young children newly diagnosed with autism.

The primary goal of Families First is to equip caregivers with practical tools to support their child, provide resources to more easily apply strategy and planning ideas, and give caregivers an opportunity to meet others with similar questions or concerns.

For caregivers outside the Nashville area, Families First workshops can be attended via videoconference technology in Jackson and Chattanooga, Tennessee, and at sites in Alabama, Georgia, Texas and New Mexico. Following the videoconference sessions, TRIAD consultants are on hand at these sites to provide coaching and feedback to caregivers.

 

Support for autism in the community

Beyond autism evaluations, diagnosis and treatment, TRIAD is working to ensure continuity of services for children with autism and their families by offering extensive training in school systems throughout Tennessee.

Through a five-year, $10 million training grant from the Tennessee Department of Education (TDOE), TRIAD and TDOE provide education and training opportunities for school personnel throughout the state.

This TDOE support and 17-year partnership allows TRIAD to provide services to educators serving kindergarten through high school at no direct cost to those educators, their schools or school systems. Further, it allows TRIAD to dramatically increase the number of educational opportunities available to educators.

“This partnership allows us to create innovative programming to support educators across Tennessee as they serve students of varying needs, including those with autism,” said TRIAD Director Pablo Juárez, MEd, BCBA. “Together with the Tennessee Department of Education, we are able to lead the nation in statewide initiatives aimed directly at understanding what ASD means within our own borders, how that compares nationally and how to best approach early intervention and school-based educational and behavioral support for students from Memphis to Mountain City. We’re very proud to be playing this role within Tennessee.”

Through this grant, TRIAD delivers approximately 100 professional development and training opportunities annually to educators through statewide workshops, trainings and partnerships as well as online education.

In addition to school training, TRIAD works with numerous community organizations in the Nashville area to better equip them to serve children with disabilities and their families.

TRIAD consultants train staff within these cultural destinations to promote full inclusion of all children and adults and help them develop research-based supports to increase accessibility, such as hosting inclusive or modified performances or activities. Participating organizations include the Nashville Zoo, the Nashville Ballet, the Nashville Opera, Cheekwood, the Frist Center for the Visual Arts and more.

“Partnerships with those invested in our hospital make sure we’re improving community integration for children with autism,” Warren said. “We feel the Vanderbilt Kennedy Center and Children’s Hospital are leading the way in ensuring that children with autism are well-served not just in their clinical care, but in their schools and community, and we want to make sure that our communities are designed to take care of our families far beyond the walls of our clinics.”

– by Jennifer Wetzel