In this KET Forum, host Kelsey Starks explores the autism spectrum with doctors, therapists, and those affected by the neuro-difference to help viewers understand how individuals with autism learn and interact with the world around them.
Here are five takeaways from the Forum:
1) Tools for Diagnosing Autism Continue to Evolve
According to the U.S. Centers for Disease Control and Prevention, an estimated one in every 36 children is diagnosed with autism spectrum disorder (ASD) as of 2020, a number that has steadily increased from one in 150 in 2000. The CDC’s definition of autism is a developmental disability that can cause significant social, communication, and behavioral challenges. These challenges can manifest in a broad range of actions.
“Autism is defined as having difficulties with social interactions as well as social communication,” says Dr. Gregory Barnes, a board-certified pediatric neurologist and director of Norton Children’s Autism Center in Louisville. “Along with that is the appearance of so-called repetitive behaviors… and you also see, often times difficulties with sensory stimuli.”
Barnes says about 70 percent of the increase in autism diagnoses can be attributed to heightened awareness of the condition and more diagnostic tools to identify it. The remaining 30 percent, according to studies, is caused by what he calls “non-genetic factors.” Barnes says researchers are continuing to study potential causes of autism, including parental exposure to environmental contaminants.
According to Barnes, the traditional method for diagnosing autism is largely based on observing a child’s behavior, along with input from psychologists, pediatricians, speech therapists, and other personnel. He says some researchers, including a team at the Norton Children’s Autism Center, are exploring more objective methods of diagnosis such as brain imaging tests. “But all of those are not ready for prime time yet, they’ve not been tested in the real world,” he adds.
Dr. Marisa Toomey, a board-certified developmental-behavioral pediatrician from UK HealthCare/Kentucky Children’s Hospital in Lexington, says there is no standard autism diagnostic test that fits every patient. Instead, she first talks with parents about their child’s behavior and what concerns them, and then she meets and plays with the child. During this encounter, Toomey makes detailed notes about how the child interacts with her, other people, and objects.
“What I am looking for is a child to tell me, through their own way, how it is that they’re thinking and they’re feeling,” Toomey says. This communication can be verbal or non-verbal, and there are several attributes that Toomey will watch for during the play date that can help her arrive at a diagnosis.
In terms of social skills, Toomey tracks whether the child responds when his or her name is called, shares interests with family members, makes little or no eye contact, lacks variety in facial expressions, and uses gestures such as waving or pointing.
There are also some behavioral traits that may indicate autism, Toomey says. These include repetitive motor behaviors such as flapping hands or rocking their bodies; repeating words or phrases; becoming upset by changes in an established orders or routines; having intense, obsessive interests that consume a majority of each day; being overly focused on a single part of a larger object; and having unusual reactions to smells, tastes, and sounds.
2) Early Intervention Is Critical
When James Vaughan was an infant, he was active and energetic. But as he began to develop communication skills, his parents noticed that James did not point and instead would guide their hands to the object he wanted. He would also not respond “yes” or “no” when asked direct questions.
“That expressive language piece was the first sign that we saw that something was not exactly typical with James’ development,” Mary Vaughan says of her son. Soon after, when James entered preschool in Louisville, he started occupational therapy (OT) and speech therapy. While in kindergarten, James was diagnosed with autism.
Since then, the Vaughans have utilized more resources and programs, including behavioral therapy, to assist James as he matured into adolescence. Today, James is a thriving 16-year-old, and his family members have learned to better understand his unique way of thinking and communicating as they offer unyielding support.
“You have to be his advocate,” says James’ father, Kris Vaughan. “A lot of times, kids can’t explain themselves, and you have to be the one to pump them up and be a voice. … You have to have a whole conglomerate of things to help them, and those practitioners we went to did that – the speech, the OT, and when he transitioned into behavioral therapy.”
In Kentucky, there is a statewide early intervention system, First Steps, that provides assistance to families with children with developmental disabilities up to age 3. It’s a valuable resource for children that may approach learning and expressing themselves differently than their peers but have just as much potential.
“Early intervention is important because a child’s brain is growing and developing rapidly,” Dr. Toomey says. “And we think that any developmental skills that (the child) is able to access and pick up during those early years are likely to stay within what we call their developmental toolkit. … The earlier you access things like speech and occupational and behavior therapy, the more likely that the skills you gain there will stick with you.”
Dr. Barnes adds that the “developmental toolkit” is open to children for only a limited time as their brains mature. That makes it even more urgent for families to receive an autism diagnosis and then access assistance during a child’s early years.
3) Two Successful Programs Assist Young Learners with Autism
There are many organizations in Kentucky providing services for children and adolescents with autism. The Appalachian Valley Autism Center (AVA) at Pikeville Medical Center uses Applied Behavioral Analysis (ABA) to help children ages 2-12 develop learning and communication skills. It’s the single largest autism center using ABA in the country.
“It’s very fun, it’s very interactive,” says Donovan Blackburn, CEO at the Pikeville Medical Center. “As you walk the halls of the AVA Center, you’ll see smiles on the kids’ faces, (they are) really engaged and really loving what they’re doing.”
The AVA has both part-time and full-time programs and draws children and families from across the region. It currently educates about 90 kids, but Blackburn says that over 500 more are on a waiting list, illustrating the great need for services in Appalachia – and across the entire state.
“Autism is not a disability, and a lot of people think of it as such,” he says. “It’s just a different ability. And what AVA does is it allows (children) to open up their minds and open up their ways of communication and it gives them a voice in a way they haven’t had before.”
In Bowling Green, the Kelly Autism Program at Western Kentucky University offers educational services for children from kindergarten through 12th grade that are on the spectrum. In addition, its Circle of Support program is designed to help WKU students as they face the challenges of college courses and campus life.
“They come here for activities where we’re trying to build different skills,” says Michelle Elkins-Burckhard, director of the Kelly Autism Program. For Circle of Support participants, these activities include time management, setting priorities, writing résumés and holding mock interviews, and other professional traits.
“We always talk about autism awareness, and it’s one thing to be aware, but it’s a whole different thing to be accepting,” Elkins-Burckhard says. “And it’s another level when we take action and go, ‘What can I do to make sure I’m being as supportive and helpful with others?’”
Patrick Elias, a WKU senior in the Circle of Support program, says that it has been invaluable in helping him build communication and social skills that he’ll use as an adult, both in the job market and in his personal life.
“This place has changed me mentally and emotionally – just being here, and having these people help me,” Elias says. “This feels like my secondary home, my family.”
4) Navigating the System to Benefit Children and Adults
If children are diagnosed with autism as infants or toddlers, they should receive assistance to develop early learning, communication, and behavioral skills that can help them as they reach preschool age. Once they enter the public school system, these youngsters are evaluated to assess how their unique approach to learning may affect classroom instruction, says Tanya Sturgill, an autism resource specialist with Fayette County Public Schools.
“Our role is to look at the level of impact that may or may not be there because of that diagnosis,” Sturgill says, “and determining whether a student would need special education services or simply modifications within that classroom setting. That begins at the age of 3, and what’s wonderful now is that most of the 3-year-olds that come to us already have that diagnosis.”
State Rep. Tina Bojanowski (D-Louisville) is the mother of a child with autism and is also an elementary special education teacher. She says Medicaid offers free services to persons with intellectual or developmental disabilities that qualify based on income through two waiver programs designed to help enrollees live as independently as possible. The Michelle P waiver currently has a waiting list of more than 8,000 individuals, while the Supports for Community Living waiver has a waiting list of over 3,000, according to Bojanowski.
Bojanowski says some constituents who received services through the Michelle P waiver while their children were young are now deciding whether to apply for the Supports to Community Living (SCL) waiver. It is designed to help young adults with autism become more integrated in the community as their parents age. But changing waivers may require getting back on a long waiting list. “I think we as a General Assembly need to go back and look at these waivers and see what changes need to happen to support families as they are today,” Bojanowski says.
Former state Rep. Scott Brinkman, who is also the parent of a child with autism, agrees with Bojanowski. Brinkman co-sponsored legislation in 2010 that required private health insurance plans to cover autism diagnoses and services. He later worked on modifying the Medicaid waiver program while serving as secretary of former Gov. Matt Bevin’s executive cabinet. Brinkman says these efforts to address the limited services available to low-income clients through the Medicaid waivers were stalled by the COVID-19 pandemic.
“It’s a challenge, but I do know that there is broad bipartisan support within the General Assembly to start to really aggressively address this waiting list,” Brinkman says. The current biennial budget includes modest increases of 50 slots each for the Michelle P and SCL waivers, he explains. There is also more money devoted to reimbursing providers.
Bojanowski says that based on her extensive research into persons with autism and other developmental differences, a critical point in each individual’s timeline occurs after they leave high school. At that point, many of the supports children and families relied on for years may end, leaving these young adults with an uncertain future. Bojanowski says her own son, who obtained an associate’s degree and now works at Kroger, needed the most help with daily personal management skills, or what she calls executive function. These skills need to be learned and practiced as early as possible.
“There’s a great book called ‘Executive Function in the Classroom’ and I recommend it for parents of children with autism and ADHD. It’s a really great source for tools that will help your children navigate education through post-secondary,” she says.
5) Adults with Autism Lead Productive, Rewarding Lives
LifeWorks at Western Kentucky University is the state’s only living and learning transition program for young adults with autism. David Wheeler, executive director of LifeWorks, says the program accepts persons with low-support needs and is open to those with other neuro-differences aside from autism. Participants must also have a desire to live independently and to build a career.
The transition program includes both in-class and out-of-class learning. “It’s all individualized. We ask applicants, ‘What are your goals? Tell me your top three,’” Wheeler says. “A lot of individuals will talk about financial management, or they want to make friends, or want to find employment. We kind of cover the gamut with them.”
For students Drew Hardison, Joy McAlpine, and Sarah Webb, the LifeWorks program has helped them develop essential skills for living independently. It provides a comfortable, supportive setting for the young adults to practice cooking, managing a budget, maintaining a schedule, and other daily responsibilities.
“We like to focus on employment right away,” says Wheeler. “With some we may be doing job development, or job shadowing, or scheduling an internship. We’ve found that employment, for the people we serve, has been life-changing.”
In 2017, the Families for Effective Autism Treatment (FEAT) organization in Louisville launched the Autism Friendly Business Initiative, which is designed to provide businesses with tools and training that helps them hire employees on the spectrum. Melanie West, executive director of FEAT, says the initiative arose out of an understanding that children with autism will grow up to become adults, and that the gap in support discussed by Rep. Bojanowski keeps far too many of them from realizing their potential.
The Autism Friendly Business Initiative has expanded to other states across the nation, including California, Florida, and Massachusetts. West explains that much of the training is simply educating business owners about autism and recommending modifications to their work environment and workflow that can accommodate their new employees’ needs. For example, some workers may need a quiet space for them to go or sensory objects to calm them if they become excited.
People with autism “want to be contributing citizens just like you and I,” West says. “So we figured out a program designed to break the stigmas and to educate, as that is the key to any fundamental thing in life. So with the education piece, we started out with what autism is and what it is not.”
One individual with autism who has turned his passion into a successful career is Cody Clark, a Louisville magician and motivational speaker. Clark developed a show that mixes magic tricks and advocacy for persons with developmental disabilities, and he’s spread his message of inclusiveness throughout the country.
When Clark was studying theater arts at the University of Louisville and developing his magic routine, he initially avoided mentioning his diagnosis to audiences. But based on advice and support from a mentor as well as his own growing self-confidence, Clark decided to incorporate his autism into a single routine – which eventually became an entire show.
“That’s when I realized that people aren’t actually going to judge me, knowing that I am autistic. They’ll admire me for having the courage to mention it,” he says.
When performing at schools, Clark does two routines. For the general student body, his show educates the audience about autism and other learning differences and also promotes acceptance of persons on the spectrum. His show for special education classes provides information and support for teens who will soon transition into young adulthood.
“A lot of people just assume that everyone is born with these adulthood skills,” he says. “People don’t realize that because of the way people with autism socialize, or the way our nervous system is wired, a lot of that information is not automatically installed in our hard drive. So a lot of those students really appreciate that someone is taking the time to not assume, but instead teach.”