"When I was taking classes, autism was this little paragraph in a book. not a chapter, not a whole book, it was a little paragraph." Debbie Keremes is sitting in her crowded office at the Autism Center at Sacred Heart Children’s Hospital off Bayou Boulevard in Pensacola. She is the manager of the facility as well as a Board Certified Behavior Analyst.
"Applied behavior analysis is the scientific study of behavior. And it's not a new field, but because insurance covers it now and people are more aware, as that increases, you know, as people become more aware of that and how to use those skills, then we can be more effective across the board".
For school age children with autism or other qualifying special needs, the local school district must create an IEP: Individualized Education Plan. Implementation of that plan is monitored and adjusted as needed. At the Autism Center, they try work with the school system to go further for their clients.
Keremes says, "We work with the school district, we don't try to have two separate things going on."
Jennifer Findley, another Behavior Analyst at the Autism Center, explains, "I would say that our biggest addition or difference between the school is that we have the ability to incorporate the parents into what we're doing."
She has a unique point of view about the topic because she is also a parent of a child with autism. She says parents usually have to wait until they come home to find out what their child has been doing in school. "They're part of the IEP process, but they're not part of the day to day operations of the school. So the parents can come to [The Autism Center] and be part of the therapy. They're invited to be in the session with us. We're teaching them the skills of how to work with their kid outside of school and outside of the clinic setting."
And she says parents learning those techniques and being involved with their child’s program not only helps their family life, but can also improve the child’s performance in school. Findley became a Behavior Analyst after seeing how the discipline helped her son. "I learned about what ABA was, got my son in care and fell in love with it. It increased his communication and reduced his problem behaviors and I said 'yep, I'm changing my entire career, that's what I'm doing'".
A few years ago many more families were given access to the center when health insurance companies began to cover Advanced Behavior Analysis. Findley says that was a turning point as both an analyst and a parent. "I would say it's only been five years or so that insurance has been covering ABA. And every year it's more that are being covered, and that's been a huge turning point. So it's a lot more readily available out there, especially since Medicaid started covering it for families."
That increased access means there is a need for more people trained in ABA. The Autism Center has always had a waiting list for service, and Debbie Keremes says training is one of the most important services they offer. "This is a pretty stressful field. It's pretty hard working with kids who can have some challenging behaviors [so] it's not for everybody. There is a lot of turnover and training needs that are always going on."
Keremes says the center does training for both parents and professionals in Advanced Behavior Analysis. "We have trained hundreds and hundreds of people to assist working in the classrooms or paraprofessionals or speech and language pathologists, occupational therapists...so again getting everyone the training that they need and keeping everyone on the same page is what's really critical for success."
But the main focus of the center remains the children and their families. Keremes and Findley both say that when parents first find out their child has autism it can be overwhelming. They hope to make the center a one stop shop for the available services.
"It's very confusing" says Keremes, "where do I go for a diagnosis , then I have to go somewhere else for treatment and I'm supposed to go to speech and occupational therapy in one location and Applied Behavior Analysis at another location and who is Autism Pensacola and how does this all fit together and we have CARD in our office which is the center for Autism and Related Disabilities [which] is state funded and there is overlap with all of them!" They say coordination of services is one of the center's priorities so they can be a place where parents can go and get information about all of the available services in the region. Findley says burnout is another big problem for families. "I felt that way too, and if t was a relief when I actually came to a place where they were able to educate me and teach me and I didn't feel quite so overwhelmed."
The Autism Center at Sacred Heart Children’s Hospital works in collaboration teachers, physicians, therapists and family members…and partners locally with the University of West Florida, CARD, the Center for Autism and Related Disorders, Autism Pensacola, Early Steps and the local school districts.