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Autism services lacking in Northwest Arkansas

by Alex Golden | May 12, 2019 at 1:05 a.m.
NWA Democrat-Gazette/ANDY SHUPE Ashlee Seay works May 2 with her daughter, Ruby Seay, 7, in a room she and her husband have converted into a therapy room in their Springdale home. Ruby and her twin sister have received an autism diagnosis and receive therapy from their mother to develop communication skills.

Sarah Thomas stopped speaking just shy of turning 2. Her doctor recommended she be evaluated for autism at the Schmieding Developmental Center in Lowell, one of the only clinics in Northwest Arkansas where specialists diagnose the developmental disorder.

"Your doctor has to send a referral to Schmieding. They call you. You fill out this big stack of paperwork, and then they're like, 'OK, it's going to be nine months or so,'" said Riana Thomas, Sarah's mom.

The Schmieding Center is on track to receive 2,000 autism evaluation referrals this year but can only do about 300, said Dr. Mary Ann Scott, the center's section chief. About 40 percent, or 800, of the referrals complete the process to get on Schmieding's wait list. The list is about nine to 15 months long, Scott said.

Insurance typically won't cover all the needed treatment without an official diagnosis.

Local children on the autism spectrum also struggle to get treatment, a problem parents and professionals attribute to a lack of services and professionals in the field. Simultaneously, autism is more commonly diagnosed in children, some as young as 2.

Thomas walked out after a daylong evaluation at Schmieding with her then 3-year-old daughter with an autism diagnosis, a recommendation to get 20-40 hours of applied behavior analysis therapy a week and uncertainty about how to go about getting the therapy or other resources. Her daughter also needed two hours a week each of physical therapy, occupational therapy and speech therapy, Riana Thomas said.

It took nearly a year for Thomas to get her daughter into applied behavior analysis therapy.

Autism spectrum disorder is a developmental disorder that can cause significant social, communication and behavioral challenges, according to the federal Centers for Disease Control and Prevention. People with autism may communicate, interact, behave and learn in different ways. The learning, thinking and problem-solving abilities of people with autism can range from gifted to severely challenged.

NWA Democrat-Gazette/CHARLIE KAIJO Alyssa Trujillo, 7, of Gentry plays May 4 with a baby bird during the Autism Involves Me annual walk at the Benton County Fairgrounds in Bentonville. Autism Involves Me, a Bentonville nonprofit group, held its annual walk to highlight the lack of services for kids with autism.

A lack of services

Applied behavior analysis therapy seeks to break down social behaviors step-by-step and provide reinforcements based on a kid's interests. The goal is for the child to exhibit those behaviors in other settings, said Brandon Sikes, a board certified behavior analyst.

Schmieding cannot do more evaluations because it has a limited number of providers who diagnose autism and an evaluation generally takes a provider's entire work day, Scott said.

Diagnosing autism can be difficult because there's no physical medical test, such as a blood test, to diagnose it, according to the Centers for Disease Control. The diagnosis is based on the child's behavior and development.

Dr. Liz Lorah, a board certified behavior analyst and University of Arkansas professor, said children need to be diagnosed at an early age so they receive services as soon as possible. She said it's much easier to close a six-month speaking delay in a 2-year-old, for example, than a 2½-year gap in a 4-year-old.

"That's not to say it's not possible and people don't do it, but it's going to be a lot harder," she said.

Nonspecialist pediatricians generally refer kids to the Schmieding Center because the diagnosis needs to come from a developmental pediatrician or therapist, she said.

About 60 percent of the kids Schmieding screens for autism are diagnosed with the disorder, Scott said. Others often have intellectual disabilities, anxiety disorders, speech disorders or a strong-willed temperament.

Logan Pratt, co-founder of Autism in Motion Clinics, which has a new clinic in Fayetteville, agreed Arkansas is underserved in applied behavior analysis therapy. While one in 59 children are diagnosed with autism, according to the Centers for Disease Control, the Behavior Analyst Certification Board lists about 80 analysts in Arkansas who can make treatment plans for children. Treatment plans are necessary for therapy.

Pratt said more behavior analysts are needed because children are being diagnosed at a higher rate.

The exact reason for the increased diagnoses is unclear but is likely a combination of better efforts, a broader definition and an increase in the number of people with autism, according to the Centers for Disease Control.


Board certified behavior analysts must have master's degrees and have worked 1,500 hours under the supervision of an analyst, which they usually do as registered behavior technicians, Sikes said.

Technicians work directly with children implementing treatment plans. The technician must have a high school diploma, receive 40 hours of training, and pass a competency exam and a written exam.

A therapy assistant position also exists and requires a bachelor's degree and certification.

Kids with autism need therapy because they aren't learning through natural ways of teaching, he said.

For example, children with autism may not introduce themselves to people. A therapist first has to help them understand why it's important and then give the children something they want in exchange for practicing greeting people a certain number of times.

Unlike behavioral therapists, speech therapists often see children before they have a formal autism diagnosis, said Lynn Center, speech pathologist and co-owner of Northwest Pediatric Therapy in Fayetteville. If toddlers aren't able to say any words by the time they are 1½ years old, pediatricians will usually refer them to a speech pathologist. That can be an early sign of autism, and a speech pathologist may refer kids to the Schmieding Center.

Northwest Pediatric Therapy also provides occupational therapy to children with autism who aren't doing typical daily tasks, such as helping dress or feed themselves, by certain ages, said Lindy Domke, occupational therapist.

Autism is a broad spectrum, and Domke said many people with the disorder are highly intelligent and capable of living independently and working when they reach adulthood.

"That's why therapy is so important for quality of life," Domke said.

NWA Democrat-Gazette/CHARLIE KAIJO Rodney Barnes of Cave Springs holds up Rhett Barnes, 3, during the Autism Involves Me annual walk May 4 at the Benton County Fairgrounds in Bentonville.

On parents' shoulders

Bentonville-based nonprofit group Autism Involves Me is often the first resource parents reach for after their kids are diagnosed, said Paula George, executive director. The organization doesn't provide therapy but walks parents through the process of getting different therapies for their children by making referrals and helping them navigate the insurance system, she said.

Parents' first questions are usually, "What will insurance cover? What resources are out there for my child? What can I do to help them succeed and live a typically normal life?" George said.

Having a child with autism can be a lot of work, and mothers especially often don't work outside the home, Center said.

Lisa Sommer of Bentonville took her son to Washington University in St. Louis in 2005, where he was diagnosed with autism at age 2. Sommer was unable to find applied behavior analysis therapy services in Northwest Arkansas and flew in a specialist from Houston to train her on how she could work with her son. She didn't return to work as domestic violence advocate and grant writer as she had planned.

She said she's often felt as though she was on an island.

Ashlee Seay of Springdale went into the University of Arkansas' applied behavior analysis graduate program after her twin daughters were diagnosed with autism. She has done much of her girls' therapy herself.

A room in Seay's house is devoted to therapy for 7-year-olds Ruby and Lilly. Ruby on a Thursday afternoon pointed to toys she wanted her mom to give her from a shelf. She also has pulled up a chair so she can stand on it and get something she wants, a sign of improved problem-solving skills. The girls will also look their mom in the eye and say "bike" when they're ready to ride their bicycles.

Three years ago, none of those things would have happened, Seay said. She couldn't tell when her children wanted or needed something.

"It's heartbreaking to know that your child needs something and not be able to give it to them," she said.

LaNelle Owens of Rogers said she was in denial for about six months after her son's autism diagnosis at age 2. He would laugh and play and didn't have the extreme outbursts she associated with autism.

"You have to respect your sorrow that you're feeling and you have to take the time to mourn the child you thought you had and then accept the child you were given," Owens said.

She was skeptical of applied behavior analysis therapy until her son called her "Mom" for the first time at age 4.

"After that, I was on board," she said.

Owens is from Denver. Her son waited about three months to get diagnosed and then he was connected to therapists. He went to a preschool where all of the teachers were required to have master's degrees and who pushed him to succeed.

They moved to Arkansas in 2016.

"It all went downhill," Owens said.

She describes getting services for her son in Arkansas as a constant game of chess.

Growing resources

The University of Arkansas' online applied behavior analysis graduate program has grown from five to 17 people and has graduated about 60-70 students since it began in 2013, Lorah said. Lorah moved to Arkansas from Pennsylvania to develop coursework for the program because of the need in Arkansas.

"When I came here, there were 22 in the state, and when I was in Philadelphia, there were more than 22 in my ZIP code," Lorah said.

Not all students in the program live in Arkansas, but many of them do and get their supervision hours working with kids at a clinic on campus. The clinic is free, so the kids don't have to have an official diagnosis required by insurance to cover therapy, Lorah said. The idea is to give students the opportunity to work with kids and also to serve kids who are on wait lists for evaluations and cannot receive applied behavior analysis therapy anywhere else. The clinic only accepts four children at a time.

"These are children who clearly will receive a diagnosis and need something before they turn 5 and finally get it," she said.

Thrive Autism Solutions in Bentonville and Learning & Behavior Solutions in Springdale also provide applied behavior analysis therapy.

Hourly fees at Learning & Behavior Solutions range from $50 to $150, according to its website. A representative from Thrive declined comment.

Schmieding has two neuropsychologists and two pediatric psychologists who can perform evaluations and is planning to add two more staff members who will conduct evaluations. The center will be able to evaluate about 500 children a year, an increase from about 300 children, Scott said.

Fast facts

• Autism costs an average of about $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents. Costs increase with the occurrence of intellectual disability.

• Mothers of children with autism are less likely to work outside the home. On average, they earn 56 percent less than mothers of children with no health limitations and 35 percent less than mothers of children with other disabilities or disorders.

• Boys are four times more likely to be diagnosed with autism than girls.

• Minority groups tend to be diagnosed later and less often.

• On average, medical expenditures for children and adolescents with autism were 4.1 to 6.2 times greater than for those without autism.

Source: Autism Speaks

What is it?

Autism spectrum disorder is a developmental disorder that can cause significant social, communication and behavioral challenges. There is often nothing about how people with autism look that sets them apart from other people, but they may communicate, interact, behave and learn in ways different from most other people. The learning, thinking and problem-solving abilities of people with autism can range from gifted to severely challenged. Some people with autism need a lot of help in their daily lives while others need less.

Source: Centers for Disease Control and Prevention


Children or adults with autism might:

• Not point at objects to show interest.

• Not look at objects when another person points at them.

• Have trouble relating to others or not have an interest in other people.

• Avoid eye contact and want to be alone.

• Have trouble understanding other people’s feelings or talking about their own feelings.

• Prefer not to be held or cuddled.

• Appear to be unaware when people talk to them, but respond to other sounds.

• Be interested in people, but not know how to talk, play or relate to them.

• Repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language.

• Have trouble expressing their needs using typical words or motions.

• Not play “pretend” games such as not pretending to “feed” a doll.

• Repeat actions over and over again.

• Have trouble adapting when a routine changes.

• Have unusual reactions to the way things smell, taste, look, feel or sound.

• Lose skills they once had such as stop saying words they once used.

Source: Centers for Disease Control and Prevention

NW News on 05/12/2019

Print Headline: Autism services lacking in Northwest Arkansas


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