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State autism-treatment options scarce, but growing

by Alex Golden | May 19, 2019 at 2:19 a.m.

Sarah Thomas stopped speaking just shy of turning 2. Her doctor recommended that 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.

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

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 that are 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

The Schmieding Center is expecting about 2,000 referrals for autism evaluations this year, but it will be able to conduct only about 300, said Dr. Mary Ann Scott, the center's section chief. The center has a limited number of providers who diagnose autism, and an evaluation generally takes a provider's entire workday, Scott said.

About 40%, or 800, of the referrals complete the process to get on Schmieding's wait list. The list is nine to 15 months long, she said.

Autism is most commonly diagnosed in children, and insurance typically won't cover all of the needed treatments until there's been an official diagnosis.

It's also a struggle in Northwest Arkansas to get treatment for children who are on the autism spectrum, a problem that parents and professionals attribute to a lack of services and professionals in the field.

After a daylong evaluation at the Schmieding center, Thomas' daughter, then 3, received an autism diagnosis and a recommendation for 20-40 hours of applied behavior analysis therapy a week. But Thomas didn't know how to go about getting the therapy or access to resources. Her daughter also needed two hours a week each of physical therapy, occupational therapy and speech therapy, 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. The learning, thinking and problem-solving abilities of people with autism can range from gifted to severely challenged.

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

Diagnosing autism can be difficult because there is no medical test, such as a blood test, to detect it, the CDC says. A diagnosis is based on a child's behavior and development.

Dr. Liz Lorah, a board-certified behavior analyst and University of Arkansas, Fayetteville professor, said children need to be diagnosed young because it is much easier to close a six-month speaking delay gap in a 2-year-old, for example, than a 2½-year gap in a 4-year-old.

Nonspecialist pediatricians in Northwest Arkansas generally refer children to the Schmieding center because the diagnosis needs to come from a developmental pediatrician or therapist, she said.

About 60% of the children the Schmieding center screens for autism end up being diagnosed with the disorder, Scott said.

Logan Pratt, co-founder of Autism in Motion Clinics, which has a new clinic in Fayetteville, says the whole state is underserved in applied behavior analysis therapy. One in 59 children is diagnosed with autism, according to the CDC, and the Behavior Analyst Certification Board lists about 80 analysts in Arkansas who can create treatment plans for such children.

Pratt said more children are being diagnosed with the disorder. The exact reason for that increase is unclear but is likely, in part, because of better detection and a broader definition of the disorder, the CDC says.

Autism has a broad spectrum, and occupational therapist Lindy 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.

Bentonville-based nonprofit Autism Involves Me is often the first resource that parents in that area reach for after their children are diagnosed, said Paula George, executive director. The organization walks parents through the process of getting different therapies for their children, 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 of such children often do not work outside the home, said Lynn Center, a speech pathologist and co-owner of Northwest Pediatric Therapy in Fayetteville.

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 to work with her son. She didn't return to work as a domestic violence advocate and grant writer as she had planned.

She said she has often felt as if she's on an island.

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 there, after which he was connected with therapists. He went to a preschool where all of the teachers were required to have master's degrees and who pushed him to succeed.

The family moved to Arkansas in 2016, and at that point "it all went downhill," Owens said.

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

Resources are increasing, however.

For example, UA's online applied behavior analysis graduate program has grown from five people to 17 people and has graduated 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.

A board-certified behavior analyst must have a master's degree and must have worked at least 1,500 hours under the supervision of an analyst, Sikes said.

Not all of the students in UA's program live in Arkansas, but many do and accumulate their required supervision hours working with children at a clinic on campus. The clinic is free, so the children do not have to have the official diagnoses that most insurance companies require to pay for treatments, Lorah said.

The clinic accepts only four children at a time.

The idea is to give students the opportunity to work with children and serve children who are on waiting lists for evaluations and cannot receive applied behavior analysis therapy anywhere else.

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

Metro on 05/19/2019


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