Watering the ‘Autism Therapy Desert’
Each year, one out of every 65 children will be diagnosed with autism, according to Peggy Schaefer Whitby, associate professor of curriculum and instruction in the College of Education and Health Professions. Schaefer Whitby is working to establish centers for rural education in autism and related disabilities to address the unfortunate reality that children in Arkansas tend to be diagnosed later than any other state. Minority children and those living in rural areas are diagnosed even later.
“We are not doing enough to diagnose children in the Delta with autism — especially young African-American children,” Schaefer Whitby said.
Just in Time
While providing clinical consultative services to the Arkansas Autism Partnership, Schaefer Whitby and her staff noticed a geographical discrepancy: children in the southeast part of the state were not accessing the Medicaid Autism Waiver Program that provides intensive services for young children with autism.
Schaefer Whitby already knew there were many barriers to qualify for the waiver program. A child must first receive a diagnosis of autism spectrum disorder and, in the state of Arkansas, that diagnosis must come from
three separate specialists: a psychologist, a speech-language pathologist and a physician. For those who live in and around Helena and other parts of the Delta, the closest providers who can make that diagnosis are in Little Rock. The cost, both in money and time, to make the two-hour trip is often too high for many families.
Compounding this challenge, another requirement of receiving the autism waiver program is that only children between 18 months and 5 years can qualify. So, if parents don’t recognize the symptoms early enough, or can’t afford to make the trip to Little Rock in time, their children might be too old to qualify. The program has only a limited number of openings, so there is a waiting list.
But perhaps the biggest barrier parents face is a lack of knowledge. Rosetta Crawford, clinic director of Kids For the Future, a day center that provides services to preschoolers with developmental delays, says, “A lot of parents here don’t know the avenues to take. ‘What do I do? Where do I go?’ There needs to be an educational phase as well, to educate the community, as well as the parents.”
Camden’s experience bears this out. Starting at age 1, his well-baby check-ups revealed that he wasn’t speaking. At age 2 his caregivers considered the possibility that he might be on the autism spectrum. But the Cravens family had to wait another 15 months for a referral to the appropriate specialists – in Little Rock – who could make an official diagnosis.
However, Cravens says they “were very lucky” because the day he was diagnosed, the family was told that he needed applied behavior analysis (ABA) therapy. Applied behavior analysis is a scientific discipline based on learning and behavior. ABA therapy, or interventions, are used to address core deficits of people on the autism spectrum. It has the strongest evidence base for autism treatment, Schaefer Whitby said.
Included with the ABA curriculum are things like discrete trial training, in which professionals, clinicians and therapists work with children one-on-one to help them reach age-appropriate goals. Some of the children learn pivotal response training, a type of “play” that requires them to practice behaviors they might struggle with. The children also engage in communication training; those who are non-verbal use pictures to communicate. All these trainings use positive reinforcement, like high-fives and cheers, only. Every good effort is rewarded.
Camden’s family was indeed lucky – even if a parent can manage to overcome all these barriers, there simply aren’t enough service providers in the Delta. There are no registered behavior technicians – the paraprofessionals who directly provide behavioral services – or board certified analysts – the health professionals and clinicians who administer, evaluate and supervise behavioral assessments and services – in the area.
Taken together, this creates what Schaefer Whitby calls a “therapy desert” in the Delta. And the cost of not receiving services early can be huge. Kids on the autism spectrum might be mislabeled by the school system and receive a behavior or emotional disorder diagnosis as a service category in special education. When misdiagnoses happen, children with autism do not receive the evidence-based educational interventions that can change the trajectory of the disorder. Without appropriate therapy and accommodations, kids on the spectrum are likely to fall through the cracks in the educational system or never learn the skills they need to live independently.
So Schaefer Whitby decided to find a solution.
Building From Within
Helena seemed to be a good place to start. The Delta town is fairly small and rural, and its population is 68% African American. It is also a very poor community: 41% of the population lives below the poverty line, including 55% of those under the age of 18.
After extensive outreach and community input, including talking to teachers, parents and clergy members, Schaefer Whitby launched the Delta Autism Project.
“The goal of my work is to help people in the Delta to provide services to families and children with autism spectrum disorder, as well as provide support to families who have children with ASD,” she says.
Together, they are building the capacity from within Helena to provide those services in schools and homes.
The next step was to get board certified behavior analysts and registered behavior technicians trained so they could begin providing services as soon as possible. The priority was to find candidates from within Helena.
“We need to be upskilling from the good people in this community,” Schaefer Whitby says. The first challenge was delivering opportunities to the right people, so she and others involved in the project identified three people in the Helena area who had the skills and desire to become board certified behavior analysts.
The master’s-level coursework and the test required to become a board certified behavior analyst are challenging, and the program has a high rate of failure. Students must be supervised by a practicing board certified behavior analyst for at least 1,500 hours, which is expensive and prohibitive for many, Schaefer Whitby says.
So, having gone through the behavior analyst training herself, Schaefer Whitby works with the students one on one and helps prepare them to become effective behavior analysts for children with autism spectrum disorder. She is also providing the required supervision free of charge – on the condition that once the students earn their certifications, they will “pay it forward” and provide supervision to the next class of behavior analyst students.
One of these students is Kashena Ross, an educational childhood specialist who has worked with disabled children for 15 years.
“At first, it was just a job,” she says, “but then it became my work.” She said when they came to her needing someone to train as a behavior analyst who was willing to go back to school, “all fingers were pointing to me.” So she agreed.
It was hard at first, “a whole new world,” but she said there have been many “aha!” moments. The motivation that keeps her going? “I want to work with special-needs kids. I guess it’s my heart.” Ross and others will take their certification exam in May 2020.
Thelma Watson and Jocelyn Washington were two of the 10 chosen for the first class. Watson says the coursework is challenging, but “we’ve grown to love it.”
Washington says, “Knowing they [the children] hit a milestone, that’s the rewarding part.”
When the students earn their board certified behavior analyst and registered behavior technician certifications, the next step is to connect them to children and families needing services so they can begin providing therapy to kids on the spectrum.
Meanwhile, Schaefer Whitby continues to work within the Helena community to collect data about variables that impact families’ access to services. She’s also looking at the role faith-based communities and clergy play in supporting families of children with autism.
Perhaps most importantly, she’s observing the teaching techniques and evaluating what is and is not culturally appropriate. She says almost all autism research has been conducted with children of white, middle-class families and might not be a good fit for other families living in different environmental contexts. She asked, “How should we as professionals look at cultural differences in accessing ABA services and the interventions we use in the natural environment? How do we need to adapt our interventions to meet the context of the families?”
Bess Ginty, a U of A alumna and owner of Kids for the Future, says Schaefer Whitby’s research on the intersection of autism, evidence-based applied behavior analysis interventions and cultural differences for those living in rural America “will revolutionize ABA in this country.”
‘We Live Here’
Back at their home in Elaine, Cravens is thankful for the services Camden is receiving now, but she worries about what will happen when he starts school and gets too old for the autism waiver program. “It’s really crucial to get those [board certified behavor analyst and registered behavior techinician] certifications,” Cravens said, “so that he will be able to continue receiving ABA therapy in school and at home.”
It is for just this reason that Schaefer Whitby and the board certified behavior analyst and registered behavior technician students are encouraging more of their friends and neighbors to go through the program. “We live here,” Cravens said. “We love our town; we love our state. We just want the same services you can get anywhere.”
And with the Autism Delta Project, that looks closer than ever to becoming a reality.