A world coming alive

As you descend the shadowy wooden staircase in the Petzoldts' concrete basement, you wouldn't know a colorful wonderland is just a few paces away.

Open the door at the steps' end and you enter a world where darkness and negativity stop at the threshold. A curious painted fox peeks around a tree. What was once a drab sewer pipe has been magically transformed into a tree branch. And Michelle Crosnoe's smiling face and cheery voice brighten the room like no fluorescent light ever could.

This is Ben Petzoldt's applied behavior analysis therapy room, a radiant, warm space where the world around Ben comes alive with each praise.

This room symbolizes Roger and Dena Petzoldt's last resort, an expensive attempt to unscramble their son's mental puzzle pieces.

One common misconception is that autism can't be treated. As late as the 1970s, autistic children were sent to institutions. But the many success stories over the years shattered that theory. In most cases, autistic children can be taught how to communicate, but every child and every approach is different. And treatment and therapy always come at a price -- a $90 billion annual price in the United States, according to the Autism Society of America.

Therapists face many challenges when treating autistic children. The challenge isn't just getting the child to learn but teaching him how to learn.

For many autistic children, language and communication are the ultimate barriers between them and the world around them. Some can understand what a person is telling them, but they can't say a word. Or a child may know that a chair is something to sit on, but he might not be able to make the connection between the word and the object.

Therapists' jobs are made even more difficult when you consider that autistic children are notorious for short attention spans.

Expensive, controversial

Applied behavior analysis, or ABA, is the most expensive of all the common therapies used to treat autism. Perhaps for that very reason, ABA is also the most controversial. Many believe it's the best program going, while some say it is abused when used as the only form of treatment.

Those who endorse ABA point to a study that shows 50 percent of the autistic children who participated in comprehensive preschool programs were mainstreamed into traditional elementary classrooms. Early intervention, all autism experts agree, is important in getting autistic children on the right track and reducing long-term costs.

Critics of ABA, including many public school officials and special education teachers, say ABA, as many parents interpret it, is based on the same basic psychology tools taught in college. Many say ABA "techniques" should be incorporated into larger programs. Critics also say there are different schools of thought within the ABA camp, where a handful of ABA experts promote their programs while putting down others.

Regardless of the viewpoint, two things are certain:

ABA is one of many therapies or techniques used to treat autism.

Because of the expense involved, parents often choose ABA when nothing else works.

Dr. Judith Miles, the director of the Autism Center and Clinic at the University of Missouri School of Medicine, said she'd put every autistic child in ABA if she could, but the problem is finding trained ABA therapists and the money to pay for them.

ABA is broadly interpreted to mean intense, one-on-one therapy, but how much therapy is actually needed varies based on a child's need and a parent's pocketbook.

For Ben, 7, ABA has worked well. Unfortunately for the Petzoldts, he didn't start the program until he was 5 years old.

The Petzoldts first put their affectionate son in Jackson's Early Childhood preschool program, but Ben's test scores did not improve in that environment, where one teacher was assigned to 11 or 12 special-needs students.

When it came time for kindergarten, the school district would not offer ABA nor a personal aide, even though Ben has no sense of fear and a tendency to walk off by himself. The Petzoldts decided not to legally challenge the school district as other parents have done in districts statewide. Instead, they followed a neurologist's advice, pulled him out of the public schools and with financial help from the Cape Bible Chapel, family and friends, they tried the expensive ABA approach, which typically costs around $30,000 per year.

Grueling but satisfying

Because of the expense and many school districts' rejection of the idea that ABA is a cure-all, the Petzoldt family is one of few families in Southeast Missouri using the program.

Basically, ABA teaches children how to learn through repetition and an overdose of positive reinforcement. Every positive response is praised.

Michelle Crosnoe, who is also Ben's aunt, is one of a handful of ABA-trained therapists who provide 30 hours of ABA per week in Ben's room.

Crosnoe works with Ben six hours a week, six grueling yet wonderfully satisfying hours.

At a therapy session earlier this month, Crosnoe sat on the floor, facing Ben with a yellow toy chair in one hand and a bag of popcorn in the other.

"Sit in a ...," Crosnoe said, letting the sentence hang, a cue for Ben to fill in the blank.

"Chair," Ben responded.

"Good!" Crosnoe's squealing, cheery voice proclaimed. She opened the bag and Ben reached in for a handful.

The exercise is intended to make Ben remember the item he saw and make a connection between the word "chair" and the chair itself. The exercise also reinforced language skills.

"My aunt is ..."

"Michelle."

"Yay! Good job, Ben!"

"Winnie the ..."

"Pooh Bear."

"That's it, smart boy!"

After some time, Crosnoe and Ben moved to motor skills.

Crosnoe held up the Pooh Bear doll.

"Touch him," she said.

Ben touched the doll.

"Thank you! Good job!"

Then Crosnoe clapped and asked Ben to repeat. He did. They touched their noses, they touched their ears. Later, Ben connected dots on a small eraser board, making squares, triangles and circles. They went on and on for hours. Crosnoe's voice and enthusiasm never wavered.

The ABA therapist monitors and documents daily progress.

Daily plans of things to work on are written on the large eraser board in Ben's ABA room. To the right of the board, six colorful posters mark Ben's progress. Every six months or so, Ben is tested. The results of ABA have been remarkable, especially considering the lack of success by other means.

When he started, he couldn't voluntarily make an "O" sound.

Just a few weeks ago, he told his mom that he loved her for the first time. Those results make the time and money worthwhile to the Petzoldts and those who are close to the family.

From zero words to 50

ABA has also proven to be effective for a Patton, Mo., boy named Jedediah Cook, who is receiving ABA through Meadow Heights School District. The school provides 20 hours of ABA at Jedediah's home and 20 hours at the school per week. Jedediah can now sit in a regular class setting for up to an hour at a time -- a shocking improvement to his mother, Carla Statler.

Jedediah, 8, is still low-functioning, but ABA has taught him how to chew and eat solid foods. He now has a vocabulary of about 50 words, compared to zero when he began.

As successful as ABA has been for Ben and Jedediah, it may not be the best approach for all children. Local special-education teachers warn against putting all hopes into one program.

Beth Emmendorfer, director of special education in Jackson, said a student may receive the intense, one-on-one instruction required by ABA part of the time but also participate in group activities with other children.

"Parents say, 'Hey this is working at home, we want to try it,'" Emmendorfer said. "But we want to use a variety of treatments so we can find what's going to be successful."

Cape Girardeau Central High School special-education teacher Debbie Lusk agreed.

Lusk has been working with autistic children since the late 1960s.

She has seen a number of fad therapies come and go. She remembers a time when autistic children were institutionalized; when "bad" mothers were blamed for autism, a disorder once considered rare.

Lusk says ABA is founded on sound principles, that the program has proven effective over time and that it works wonderfully for many children.

But it's not for every child, she says.

"You have to know the child. You have to find out what works. It's everything all together that makes a difference," she said.

As an example, Lusk referred to her former student, Ella Farrow. Ella, now 23, stopped talking at age 2 and did not speak until she was 7. And it was difficult getting her to pay attention. Lusk tried several types of therapy, but the one that worked best was social reading -- reading a story about Ella herself.

"Today, Ella walked straight from the bus to the classroom," the teachers would read. The reinforcement worked and the stories caught Ella's attention. Every day, the teachers would add more to the story. And every day, Ella showed improvement until one day she finally spoke.

"You have to weigh all the factors," Lusk said. "ABA has a concrete foundation, but if it's the only technique you use, you're limiting yourself."

Teachers in Jackson found that the picture exchange communication system and computer therapy worked for a little girl named Amanda Scholl, who lives in Jackson.

'Ca-ticka-ticka-ticka'

Amanda's special-education teacher two years ago, Shelly Stone, said ABA probably wouldn't have worked for Amanda because she would get frustrated when asked to repeat words.

When Stone first met Amanda, the little girl would flap her hands and repeat the sound "Ca-ticka-ticka-ticka" over and over. The hands and sounds were visual and auditory self-stimulation releases typical with autistic children.

Now, Amanda is quite the drama queen who likes to act out movie scenes in front of the mirror. She still occasionally reverts to old stimulation habits but not often.

The picture exchange system is a program where everything is labeled and the child begins communicating by pointing to what she wants. The children also learn to associate words with objects.

This led Stone and Amanda to computer therapy, where Amanda's improvement took off. Amanda enjoyed playing a computer program, using touch-screen monitors purchased by the Jackson School District. A little bunny clapped every time Amanda got the right answer. The bunny walked off the screen after every incorrect answer.

Another type of popular therapy is music therapy.

Bryan and Jaime Noack have noticed that their autistic daughter, Alexis, loves music, particularly children singing. Alexis began music therapy this month, a year after the Noacks were put on a waiting list at Judevine, an autism service organization.

Kelly Pujol is the only music therapist in Southeast Missouri. She works part time and sees 12 clients with almost that many waiting for the opportunity to receive her services.

At Alexis' first session, the 6-year-old paid attention for an unusual amount of time, approximately 10 minutes, playing with chimes. Pujol sang gentle songs about Alexis while the girl strummed the silver, pencil-thin cylinders.

"I think we're going to have to buy one of those," Bryan Noack said, smiling, while watching his daughter play.

Alexis cooed, perhaps even hummed, to some of the music stimulation. Alexis doesn't play with toys at home, but she seemed to have a good time poking keyboard keys and listening to Pujol sing.

Unless the music is too much of a sensory overload for a particular child, Pujol said, music therapy almost always works because music is processed partially in the brain stem, bypassing neurons.

"If you get to the brain stem, that's what's important," she said.

Pujol said music is not just used as positive reinforcement. It also helps the autistic children begin to make the logical connection necessary to understand the purpose and meaning of language.

The auditory integration training program aims at doing the same thing. AIT is a sound and music technique developed in Europe more than 30 years ago. It is aimed at children particularly sensitive to sounds; those who tune out noises and have short attention spans.

A machine plays high- and low-frequency sounds through headphones for two half-hour sessions for 10 straight days.

According to the Autism Research Institute, data suggests that the technique works in many cases. Many parents have noticed an increased attention span in their children as well as improved social and academic skills.

Dr. Aaron Andrews says chiropractic neurology is another option available for autistic patients.

Andrews, Cape Girardeau's only chiropractic neurologist, said he has not yet treated autistic children, but he has helped children with attention deficit disorder.

"I try to find the part of the brain that is not working and try to find new pathways and allow other parts of the brain to compensate," Andrews said. "To build those parts up, I might play subtle music in one ear or try to stimulate one part of the brain."

Mixed and matched

The list of therapies and techniques used to help autistic children is virtually endless. All of the individual therapies can be mixed and matched in an overall program to supplement the traditional forms of therapy like speech, physical and occupational therapy.

Perhaps the most important way to help an autistic child is to allow him to integrate with other children.

Dr. David Crowe, a Cape Girardeau orthodontist, said a Circle of Friends concept was perhaps the most important element in his son Taylor's upbringing. Taylor, who at one time stopped talking and threw fits every half-hour, is now an adult living with friends and taking art classes in California.

The Crowes and special-education teachers sought normally developing peers to befriend Taylor to help him develop socially.

"We wanted to surround him and challenge him with friendship," Crowe said. "We wouldn't allow him to isolate himself.

"I think that taught him how to be a kid."

Staff writer Callie Clark contributed to this report.

bmiller@semissourian.com

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