Mother of son with autism shares her journey for help: Hope 4 Autism expands in Arkansas

For Titus, the signs were there early.

There were signs of severe autism. He did not talk. He has needed a device to communicate better. But has trouble with aggressive behaviors such as hitting and scratching people. His mother broke her wrist trying to stop him from hurting himself.

Titus Bryant, 7, can't tell his mother, Tara Kappler, what is upsetting him. She says she knows it is not her, but the autism that takes control.

She recalls the signs starting when he was 3 years old.

She says therapy was needed early so she has been "hyper-focused," on ABA, or applied behavior analysis therapy to help with his aggression. He could bite, scratch, hit and injure himself.

"Titus as a little boy, 2 and 3 years old, is when we really started noticing behavior problems and I was really concerned because for a little 2 or 3 year old even though it was still easy for me to contain him, he was still a very strong individual," Kappler said. "I was always afraid that, you know, what happened when he was 10 or he was 15 or he outgrows me or even as an adult, what can I do to make sure I don't have to institutionalize this child when he is older and he can stay home and I can be his caregiver."

Caregiving has not been easy. Kappler is a single mom who is a cosmetologist. She can't work from home or full-time or homeschool. She enrolled Titus in kindergarten in the Greenwood School District in 2021. He wouldn't wear a mask before COVID-19 restrictions were lifted, but children with disabilities were exempt.

Getting Titus in a public school plan has been one of her biggest challenges, she said.

As Titus grows, so does his need for therapy. He is currently in therapy 40 hours a week covered by insurance. Meanwhile, the rate of autism also grows.

"Thirty percent of households with an autistic child has an adult who stops working to care for the child," Kappler said. "A big portion of my day is taking him to and from different therapies. How do you get ABA therapy in school districts? That is just not something you see. I think that has set us back a lot."

A team at school formed an individualized education plan, and outside therapists were not always allowed into district programs.

"Insurance has continued to agree to continue to pay for it while he is in school at the school and you have these people who are not professionals in the ABA field saying, 'We don't think he needs that," Kappler said. "Then you find yourself backed up against the wall filing for due process which takes years to get to sometimes. And meanwhile, you have this child who is backtracking when you don't have someone who knows how to follow or think something needs to be followed."

Titus struggled without ABA, she said.

"Titus's behaviors within six weeks started to deteriorate. They were really going downhill. He was banging his head hard. It's a lot worse in a 7 year old than in a 2 or 3 year old. His obsessive-compulsive disorder has gotten worse, too.

"When you are constantly upset you're not getting access to an education."

One day he came home from school with bruises on his back.

"Nobody called me to tell me he had any type of day that day. He just came home and I just found bruises on his back when I picked him up," Kappler said. She was told it happened at his desk with his chair.

"I've been hit and scratched. In December, I was trying to help him from not hurting himself and he broke my wrist."

Titus only weighs about 52 pounds, but "is incredibly strong."

"And I need my hands for him," she said.

Rapid rise

Sunday, April 2, 2023, is recognized by autism advocates as an international Autism Acceptance Day. April is autism acceptance month worldwide. This year, the Center for Disease Control's latest numbers show one in 36 children in the United States are now affected by autism.

In 2005 the rate was 1 in 166. In 2016, the number increased to 1 in 54, the CDC reported. There has yet to be a cause found, or a cure.

Autism is a wide range of developmental differences that include communication and interaction with others. Obsessive or repetitive behaviors are common. Autism in Arkansas is a condition that requires a medical diagnosis. Insurance providers have expanded coverage.

Sheila Barnes, founder and CEO of Hope 4 Autism, is the founding director of the master's degree in applied behavioral analysis offered at Ouachita Baptist University in Arkadelphia. She is working to open clinics in Arkansas and Oklahoma. State law in Arkansas required insurance providers to cover autism in 2011. A similar law was passed in Oklahoma in 2016.

Barnes said she is also working on building an outdoor garden for children.

Titus has had full support from Hope 4 Autism, his mother said,

She has also made progress in understanding her son.

"What is making him so upset? I've been getting the back end of it. It is kind of like a secondary emotion. I'm not actually feeling what he's feeling to have so much stress and being so upset. And that broke my heart for him because he obviously couldn't tell me what is happening."

She has been at Hope 4 Autism for four years. Her early goals were to help Titus attend a school classroom with his peers.

"He went from being non-social, playing by himself, not really making great eye contact with people he didn't know to being so social now. He has so many friends and he is the life of the party all day," Kappler said.

There have been struggles finding insurance coverage for many parents, Kappler said. And early intervention for autism has been a focus as the number of children affected has continued to climb each year, therapy for older children has been harder for many parents.

Insurance is covering more therapy in Arkansas, she said.

"ABA therapy has really picked up in the last four to five years. The state of Arkansas is requiring insurance to cover a portion of it. You're seeing more clinics have popped up.

Barnes posted on Facebook: "We are pleased to share a new resource to families of older children. Bridge ABA is opening a clinic in Poteau, OK. By November 2024, they hope to have clinics in Fort Smith, Alma, Van Buren, Sallisaw, and other communities."

Titus will continue working each day at Hope 4 Autism in Fort Smith.

Kappler said she is thankful for the Hope 4 Autism clinics.

As the weather has warmed outside, Titus has helped start a garden. A flower, herb, and vegetable garden will hopefully, produce vegetables and herbs they have grown to take home, Barnes said.

For more information about Hope 4 Autism email info@Hope4Autism.us.

This article originally appeared on Fort Smith Times Record: Hope 4 Autism helps children in Fort Smith area