Parents celebrating advancements of past generation in identifying, treating autism

Rex Rattler lived in a nearly wordless world, a place of limited expression. "Yes." "No."

At 3, Rex could barely speak. His mother, Cynthia Brown, a Poplar Bluff, Mo., doctor, blamed herself. She thought she was a bad parent, even though she had enrolled the child in speech and developmental therapy after taking him to several specialists.

At one appointment, Rex was diagnosed with autism.

"It was shock. Disbelief. Fear," Brown said. "I really did not know what autism meant. The only thing I knew about it was from the movie 'Rain Man.' It was hard for me to accept that diagnosis."

Despite the diagnosis, Rex remained communicatively and socially limited, speaking only in simple sentences. His mother grew increasingly concerned. Rex was becoming a young man with little language. She could understand his gestures, his routines, his needs. But she wouldn't always be there. What then?

That's when the miraculous happened, Brown said.

More than a year ago, she took Rex, now 14, to the Southeast Missouri State University Autism Center for Diagnosis and Treatment. It was there after detailed diagnosis that a therapist gave Rex a keyboard device with the hope he would be able to communicate. He did, in full sentences -- nearly immediately.

The first question: What are you wearing?

"He wrote, 'I am wearing a white and green and brown sweater,'" Brown recalled. Then, Rex emphatically noted his favorite food: I love chicken nuggets. "I had never known that," she said.

"I was in tears," Brown said. "I felt a sigh of relief, that Rex would have some level of independence, a way to communicate with the outside world."

Rex is thriving, Brown said, using technology provided through the clinic to expand his language. The technology, Brown said, is helping the teen improve his verbal skills at the same time.

April is National Autism Awareness Month and Brown and parents like her are celebrating the advancements made over the past generation in identifying and treating autism spectrum disorders, knowing that there remains a long way to go.

Arguably the most significant advancement over that time is the medical community's recognition that autism is not a single neurological disorder but a field, a spectrum, of developmental disabilities that can cause significant social, communication and behavioral challenges. They have come to understand that people with autism spectrum disorders handle information in their brain differently than other people.

The numbers have climbed in the early days of diagnosis. The Centers for Disease Control and Prevention estimates that an average of 1 in 110 children, as high as 1 in 80, children in the United States has an autism spectrum disorder. The center estimates about 730,000 individuals between birth and 21 have an autism spectrum disorder. In a 2006 CDC study, Missouri was shown to have one of the highest rates of autism spectrum disorders in the nation, at about 12 out of every 100 children.

"More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis," the CDC said on its website. "We believe the increase in ASD diagnosis is likely due to a combination of these factors."

Dr. David Crowe, of Cape Girardeau, was a parent at the dawn of autism understanding. When his son, Taylor, was diagnosed with autism in 1985 at 3 years old, there were no local support groups and few nationally, and there was one doctor in Cape Girardeau who had one autistic patient. Crowe and his wife were effectively on their own in tracking research, and it was a lonely place to be.

Taylor was a happy, joyful toddler, advanced in speech and development before he shut down. He lost virtually all of his language skills by the time he was 3 1/2.

"One morning we were having breakfast, and Taylor said, 'Daddy, my mouth won't say the words, my mouth won't say the words,' and he started crying," Crowe said. "He was letting us know that's what was happening; we just didn't know what he was saying. Then it was gone."

Taylor couldn't stand being touched, he was impatient, he couldn't communicate and he was frustrated. He cried all the time.

"It's very difficult to put into words what it's like to have your child essentially change overnight, becoming distant, uncomfortable and unhappy after he had been a happy, joyful little child," Crowe said.

But Taylor is a "living, breathing, example of what human potential could do," his father said.

Through meticulous speech therapy work, deep social connections, patience and love, Taylor, who turns 30 this year, is an artist and an author who has traveled the country telling his story, explaining autism spectrum disorders.

"We always felt that happy little boy was locked in there, and we just wanted him back," Crowe said.

The work goes on at Southeast's Autism Center, which includes a suite of services with four providers. There's the Thompson Center, focusing on early interventions, deemed critical in development of children with ASD. Touchpoint Autism Services, providing in-clinic and in-home care over the life span of clients with autism. And the Tailor Institute, founded by Dr. David Crowe and inspired by his son, Taylor, focuses on employment outcomes for the gifted and savant clients, among other initiatives. The institute could lose its $200,000 contract with the state, however, following a Missouri Senate Appropriations committee meeting Tuesday morning aimed at budget cutting. A conference committee will make the final decision. As it stood Tuesday, the House has kept the funding in, while the Senate has it targeted for the budget ax.

Crowe said the funding is the institute's lifeblood, although the hope is to move from state support into an endowment structure.

Southeast's Autism Center opened in January 2010.

"We have one full year under our belts, and already in that short amount of time we have a six-month waiting list for evaluation appointments," said Connie Hebert, director of the autism center. "This was definitely a much-needed service in the region."

Brown said living with her son's autism taught her many things, above all patience and love. She remembers the first time Rex told her he loved her. He was 5.

"I walked into the room and he typed 'I love you' on the screen," she said. "If we hadn't gone through the struggles, I would not have appreciated that special moment."

mkittle@semissourian.com

388-3627

Causes of autism spectrum disorder

There are likely many causes for autism spectrum disorders. There may be many different factors that make a child more likely to have one, including environmental, biologic and genetic factors.

* Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an autism spectrum disorder.

* Children who have a sibling or parent with an autism spectrum disorder are at a higher risk of also having one.

* Autism spectrum disorders tend to occur more often in people who have certain other medical conditions. About 10 percent of children with an autism spectrum disorder have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.

* Some harmful drugs taken during pregnancy have been linked with a higher risk of autism spectrum disorders, for example, the prescription drugs thalidomide and valproic acid.

* The once common belief that poor parenting practices cause autism spectrum disorders is not true.

* There is some evidence that the critical period for developing autism spectrum disorders occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

SOURCE: Centers for Disease Control and Prevention