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Area families struggle to help children diagnosed with autism

Longview News-Journal - 4/2/2017

Bella Lopez says her son Matthew was just like any other child when he was a baby.

"I kept telling myself he would talk," Lopez said. "When he was 2, I took him to a pediatrician, and she said he would talk when he was ready."

Matthew was officially diagnosed with autism spectrum disorder in May, several days after his fourth birthday. He has nonverbal, low-functioning autism, which means he has severe difficulty communicating with others and cannot formulate words.

"As a mother, I was crushed," Lopez said. "There is no cure and no one knows what causes it. I immediately blamed myself. Was it something I ate while pregnant? Was it something I gave him when he was a baby? It was extremely hard."

April is National Autism Awareness Month. According to data released in 2014 by the Centers for Disease Control and Prevention, one in 68 children have autism spectrum disorder in the United States.

A 2014 CDC National Health Interview Survey suggests one in 45 children, ages 3 to 17, have been diagnosed with autism spectrum disorder, which is higher than the official governmental estimate.

"He's very sensitive to sounds and tastes," Lopez said. "He doesn't seek interaction with others. But if he is mad about something, he'll go and he'll pinch you as hard as he can."

Lopez said Matthew has learned how to communicate by pulling on her hands or beckoning toward things he wants.

"If he wants you to lay on the bed, he'll pull you to the room and he'll push you down onto the bed," she said. "If he wants something, most of the time, if he can, he will bring it to you."

One of the hardest parts about raising a child with autism is how much of a toll it takes on her other two children, Lopez said.

"We have two other boys, ages 9 and 6," Lopez said. "I know I give more attention to Matt, and I know they notice that."

Lopez said she thinks Matthew has made significant progress since starting at South Ward Elementary School in August.

"He loves his teacher," Lopez said. "They have him in a routine to where he knows what he's doing, where he's going."

The school provides speech therapy and occupational therapy to children with autism. Lopez said that has greatly helped their family since their insurance does not cover other therapy services.

"We were doing it last year at home," Lopez said. "But our insurance doesn't cover it. So we can't do that anymore."

Lindsay Birchfield, a board certified behavioral analyst and regional director for Behavioral Innovations, said the biggest barrier to serving other populations is insurance.

"Insurance has put some very specific guidelines in place," Birchfield said. "Which can be difficult because sometimes a family has a child who would very much benefit from ABA services."

Behavioral Innovations is a statewide provider of Applied Behavioral Analysis services to families of children with autism and other developmental disorders throughout Texas and parts of Oklahoma.

Behavioral Innovations works with patients at treatment centers, at home and at local schools to provide ABA services to children with autism.

ABA examines the interactions between people and their environment to determine the effects that environment has on a person's behavior, according to the Behavioral Innovations website.

"It's a therapy that really emphasizes the principles of how people learn," Birchfield said. "We spend hours of time observing and interacting with the child, then we come up with a very specified treatment plan to address that child's skill deficits, ultimately hoping to produce meaningful changes that's going to allow that child to have the most successful life."

Birchfield said even though autism spectrum disorder can be diagnosed as early as 2, most children are not diagnosed early enough.

"We still have a trend of clients who are not coming to us until they're 4 or 5 or even older," she said. "And that's several years of missed opportunities to be working with them. ... The earlier you can identify the symptoms and put a treatment in place to make improvements, the better outcome you're going to have."

Symptoms of autism include repetitive or ritualistic behavior, communication and social skills deficits, and other abnormal behaviors that might result from communication delay.

"So they have difficulty interacting with others, picking up on social cues, building meaningful relationships," Birchfield said. "For some kids, that means they have no ability to vocalize. We have some kids that are very high-functioning who may be able to have conversations, but they have difficulty picking up on some non-verbal cues and some more social aspects of language."

Birchfield said one common symptom of autism is abnormal repetitive behaviors, such as rocking back and forth, children flapping their hands and repeating certain sounds of phrases.

Birchfield said part of ABA therapy is figuring out the reason behind such behaviors.

"They're doing this behavior for a reason," she said. "It's our job to figure out what's the function, the purpose of this behavior, and then teach them a better way. A lot of what we do is teaching the child to learn other skills."

But not all families can afford ABA services. The Lopez family is one of many in the area whose health insurance does not cover autism therapy.

"If we could afford other therapies, we would do whatever we could," said Chris Lopez, Matthew's father.

Vera Turney, another Longview mother of a child with autism, said she and her husband have looked into ABA services but have gone through a lengthy process with their insurance company to get the therapy covered.

"A lot of people think that if you have a child with special needs, they automatically get benefits, that they automatically get Medicaid or assistance from the government," Turney said. "No, for us, we don't get any type of assistance whatsoever, because even if a child does have a disability, it's still based on the parents' income."

Turney's 5-year-old son Langston is under-sensitized, which means he seeks sensory input and stimulation.

"He loves traveling, he loves going shopping, he loves being out and about," Turney said. "He really wants to try to be social and he wants to be involved with his peers, but as far as social interaction goes, he has no social skills whatsoever."

Turney said while raising a child with autism is hard, Langston has brought so much joy to her family.

"You almost go through a grieving process when your child gets diagnosed because you realize your child's not going to have the life you thought they would have," Turney said. "But by no means does that mean it is not a good life."

Turney said other families should know they are not alone, and suggested getting involved with the newly formed Longview support group Living in the Puzzle. The group meets at 7 p.m. the third Tuesday of every month at Motion Church, 110 Triple Creek Circle, Suite 30, in Longview. All families are welcome.

The Arc of Gregg County, an advocacy group founded in Longview in 1960, works with individuals with intellectual, developmental and other disabilities in the community to promote education and provide support to individuals and their families.

The organization provides day habilitation services and various resources for individuals with disabilities and their families. For information, visit www.arcofgreggco.org.

"There's so many different things you can do to help them," Bella Lopez said.

Bella Lopez said Matthew is no less of a person, just different from others.

"Matt can spin around without getting dizzy," she said. "Matt can watch videos on YouTube and fast forward to the exact part he wants to watch. Matt's legs are extremely toned due to his love of jumping."

Chris Lopez said their goal is to see Matthew live a "normal life" one day.

"To be able to do everything we do," he said. "That would be wonderful."

For information, visit www.autism-society.org.

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