Anything to reach Ryan

To scientists, it's quackery. But to a Clearwater family with an autistic child, a controversial treatment plan is their best shot at a normal life

St. Petersburg Times/June 22, 2004
By Kim Cross

Clearwater -- Kitty Young nods at two ragged holes in the drywall, one the size of a young boy's head.

"See over there?" she says, sipping coffee in her kitchen. "That's great."

The holes in the drywall are great because there are only two. "Our last house had holes all over the place," she says.

Ryan, Kitty's son, is autistic. He used to throw several violent tantrums a day, covering his mother and himself in bruises. Sometimes he'd put his head through the wall. He learned to tap first, to avoid the studs.

Today, at 13, Ryan is a different boy. When neighbors stop by, he rushes to greet them. He can't always say hello, but he meets their eyes instead of sitting obliviously on the floor, lost inside his head. When a visitor comes, he might thrust a pen into her hand and say, "Sword fight?" so she'll draw a picture of a duel.

He has learned the rudiments of reading and writing, though his spidery letters tumble off the page. Mostly he parrots what other people say but sometimes will utter a word or two of his own.

Kitty and her husband, Randy, attribute Ryan's progress to a controversial treatment program they began three years ago. Developed by the Institutes for the Achievement of Human Potential in Philadelphia, the regimen includes more than 40 hours a week of treatments administered at home by parents. Followers call it the Doman program, after its creator, Glenn Doman.

During one treatment, called "patterning," Ryan lies prone and passive on a table while others move his arms and legs in a way that is supposed to stimulate brain activity.

Mainstream researchers years ago dismissed the Doman program as pseudoscience, saying it is ineffective and potentially detrimental to families because it is all-consuming. But the Youngs say it has helped Ryan more than anything else they have tried.

"Before, everything we did, we got this," Kitty says, holding her hands a foot apart. Then she stretches her arms as wide as she can, like an angler describing a legendary catch. "His improvement in the past three years is like this."

Now the Youngs want to step up Ryan's hands-on treatment. But Ryan's parents and younger sister are no longer able to administer the physically demanding therapy by themselves. Ryan has grown so tall and heavy that it takes five adults to "pattern" him.

To complete his program with the intensity they believe will make him "normal," the Youngs need a hand. One hundred and twenty six hands, to be exact, to get them through each week.

Ryan, a normal baby, was 2 when he stopped moving, stopped talking, stopped responding. He no longer seemed aware of the world around him. He was diagnosed with autism. Doctors said they don't know the cause and there is no cure.

"We didn't believe that," Kitty says. There had to be something, she believed, and she was going to find it. "I would do anything. Anything but drugs."

Despite the recurrent, violent tantrums, the Youngs refused to put Ryan on medications that would only sedate him, treating the symptoms but not the disease. They tried modifying his diet, a widely accepted treatment for autism, and saw minor gains. They tried 18 months of speech therapy and occupational therapy. Again they saw only "an inch" of improvement.

Disenchanted with the medical establishment, the Youngs looked to alternative medicine for a cure.

Randy's mother paid $3,000 for intravenous doses of secretin, a digestive hormone that was said to improve behavior and language. Ryan screamed at the needles but seemed to improve. Kitty says Ryan's doctor later took him off the hormone. (Later research showed that secretin is no more effective than a placebo, according to the National Alliance for Autism Research.)

When Ryan was 10, someone recommended a book called What to Do About Your Brain-Injured Child by physical therapist Glenn Doman. To Kitty, it was full of explanations that "just made sense."

The book, first published in 1974 and now in its second edition, described autism, Down's syndrome, cerebral palsy, epilepsy and other conditions as treatable brain injuries. Doman wrote that his rigorous treatments would stimulate and "(organize) the hurt brain so it might perform its own functions." The Youngs flew to the Doman institutes in Philadelphia, founded in 1955, for the first in a series of lectures. They estimate they will have spent almost $10,000 on tuition, travel and lodging once they've attended all nine.

Kitty had already quit her job in finance at the Church of Scientology to devote herself to Ryan's care. Randy says he works from home as a freelance home designer. The family moved to Clearwater from Miami two years ago.

When talking about the future, the Youngs often use the phrase "when Ryan is well." They believe the Doman program will make him a normal boy.

"For $10,000 or less," Kitty says, "I can totally fix my kid."

The Young household revolves around the program.

"Honey, I have to mask you," Kitty says as she fits a small plastic mask over Ryan's nose and mouth. It has a straw at the end so he can get a little air, but mostly he takes in his own recycled breath as the bag balloons and shrinks. He plays pinball on the family PC until his mother removes the mask. Or until he hears the timer and rips it off.

The Doman organization says the exercise funnels more oxygen to Ryan's injured brain. When the mask comes off, Kitty restarts the timer for a five-minute break between maskings.

Ryan wears the mask 40 times a day.

Even outside play is sometimes part of the treatment. Kitty has promised her 11-year-old daughter, Marina, money toward her Girl Scout camping trip if she will teach her brother how to "brachiate." That means swinging across a "brachiation ladder," wooden monkey bars that Randy built. If Ryan learns to skip a bar by stretching wide, it will help him "build a better chest," according to the Doman program, allowing his lungs to expand, getting more oxygen to the brain.

Marina, a healthy, intelligent girl who takes tap dancing lessons and hapkido, a type of martial arts, swings across the bars with ease.

When it's Ryan's turn, he stutters across, giggling and grinning and gasping. His eyes light up, and for a few moments he is joyful, lucid, present.

Later, cuddled up on the couch, Kitty reads Ryan a book about phases of the moon. His eyes appear to follow the words. Sometimes his lips move. Ryan loves Dr. Seuss and will sometimes recite entire pages from Marvin K. Mooney, Will You Please Go Now, his mother says. But the longest sentence of his own tends to be, "Papa John's thin crust pizza, please," a request that's off his diet.

Kitty spends much of each day trying to get Ryan to eat his vegetables, part of the strict diet recommended by the Doman program. (To help identify possible allergens and promote balanced nutrition, he is not to eat the same food twice in a four-day period.) But Ryan, a picky eater, hates vegetables.

Today, a single crown of broccoli stands between him and his reward: a trip to Super Target.

Ryan picks up the broccoli, studies it, makes a face that tells Kitty he knows what he must do.

"Try it," Kitty says.

"Try it," Ryan says.

Ryan returns the broccoli to its lonely bowl and reaches for the hamburger patty instead. Kitty waits him out. When Ryan sticks to his diet, she says, he doesn't have mood swings. His skin tone looks healthy, and his eyes get brighter. And he's starting to like healthy foods, like carrots.

"A year ago, I never thought this was possible," Kitty says. "Every new vegetable costs me a trip to Super Target and a new toy. But I don't care. It's worth it."

Every day after dinner, a small crowd gathers at 1444 Orange St. They come to help the Youngs perform the physical therapy treatment that is the cornerstone of the Doman program.

"Okay, Ryan, it's time for patterning," Randy says one evening as five adults gather around a table in Ryan's room.

Ryan lies on the padded table face-down, as if getting ready for a long massage. Kitty cradles her son's head in her hands. Randy sprinkles cornstarch under Ryan's knees so they won't rub and hurt. The volunteers - neighbors and friends who have pledged 15 minutes of their time one day a week - position themselves around the table.

"Okay," Randy says, pressing the timer. "Go."

The five adults move Ryan's arms and legs so that he looks like he's crawling. Kitty turns his head gently from side to side. His limbs slide across the cornstarch in smooth synchronicity, and the table goes whump whump whump.

Ryan simply lies there, limp and apparently content to be the center of attention. Sometimes he "helps," and Kitty has to tell him to relax.

When the timer starts beeping to signal five minutes, Ryan hops off the table for a break. When it beeps again, he returns, climbing up obediently for a final session.

The "patterners" usually linger for a while when they're done, finishing conversations they started around the table. Some, like the Youngs, are Scientologists. Others are neighbors and sympathetic parents. To Kitty, they are the truest of friends.

"My entire social life is the people who come and pattern," she says.

She plies them with her cookies, cakes and brownies. She offers to babysit, bake birthday cakes and reciprocate any way she can.

Yet there are too few volunteers to get Ryan through a full week of patterning. Kitty has exhausted herself and her possibilities in the search for more help.

She tried papering the neighborhood three times with letters politely explaining her situation. She visited five churches, posted bulletins at the YMCA and even went to the fire station seeking help. But only a handful of people came - mostly friends and neighbors.

"It's not that hard," Kitty says. "I don't see why people won't do it."

The driving concept behind the Doman program is that we must learn to crawl before we can walk.

Children should never skip a stage of development, such as crawling, because doing so could stall their functioning at higher stages. When children like Ryan can walk and run - but not necessarily crawl - they must be "patterned," a way of teaching the brain what it has missed. During that process, the theory goes, inactive parts of the brain suddenly light up with neurological activity, growing stronger with use.

"Think of patterning as a kind of closed-brain surgery," says Janet Doman, Glenn Doman's daughter, who now runs the organization. Like the Youngs, Doman is a member of the Church of Scientology, though she says there is no connection between the organization and the church. "Without having to take a kid in the OR and crack his skull, we can actually access the subcortical area of the brain to teach him how to crawl."

Janet Doman says patterning is just a small part of a program that treats the brain through physical, neurological and intellectual stimulation. The maskings and the brachiation ladder are all part of an effort to develop the whole child, intellectually, physically and socially.

The Doman organization, a nonprofit, reported revenues of $4.5-million in 2001 with a net loss of $441,867. Janet Doman estimates it has helped 20,000 children since 1959. Among them are severely retarded, paralyzed or blind children, along with perfectly healthy kids whose parents want to make them smarter.

Most of the children show significant improvement, Janet Doman says. Of the 572 speech-impaired children treated between 1998 and 2003, the organization says, roughly half learned to speak for the first time.

Other children made leaps that seem miraculous. Of 123 children who were blind, 85 percent saw the world for the first time. Of 436 children who were paralyzed, 40 percent learned to crawl, according to the organization.

Doman says the organization's staff would never promise results without seeing a child, and they haven't seen Ryan yet. But has she seen autistic kids fully recover under the program?

"Absolutely."

Considering those claims, the scientific community's response to the Doman program is startling.

"Never heard of that," says Joe Guzzardo, spokesman for the National Alliance of Autism Research.

Has he ever heard of patterning?

"Nope."

Brachiation?

"No."

A conversation with Mike Maloney of the Organization for Autism Research goes much the same way. So does a call to Israel Green-Hopkins, a researcher at the Autism Research Foundation.

Plenty of people in the scientific community are aware of the Doman theories, though.

The American Academy of Pediatrics issued a statement warning parents to beware the false promise of patterning. It says patterning has no special merit, that the claims of its advocates remain unproved and that the demands of the therapy can strain financial resources and harm family relationships.

In 1987, a Pennsylvania woman shot and killed her mentally retarded son, whom she had been trying to help with the Doman regimen. The woman, Irene Bernstein, pleaded no contest to third degree murder and was sentenced to five years' probation. Her lawyers said that she "buckled under the immense stress of therapy."

Dr. Steven Novella, director of general neurology at Yale University School of Medicine, reviewed dozens of studies on patterning for an article he published in Connecticut Skeptic in 1996. The article was reprinted on Quackwatch.com:

"The Doman-Delacato patterning technique is premised on a bankrupt and discarded theory and has failed when tested under controlled conditions," he wrote.

"The research in this area died 30 years ago," Novella says on the phone from his Yale office. "The technique was put to the scientific test, and it was shown to be ineffective."

Novella does not deny that parents who pattern see improvement. But he attributes the improvement to the natural progression of child development.

"Even children who are developmentally delayed or mentally retarded are still developmentally improving," he says, just not on an average curve. "Parents are deceived into thinking the intervention is helping."

As for the maskings, Novella says, "There is absolutely no reason to believe . . . that increased (blood) flow is at all helpful to the brain."

After he published his findings, Novella tried to contact the Doman organization. He says officials declined his request for an interview.

"They've cut themselves off from the scientific community," Novella says. "That's a recipe for being a charlatan."

Janet Doman says, "Any professional who wants to come here is welcome. We're as open as any organization can be."

Dr. Edward Zigler, a professor of medicine and psychology at Yale University, says the Doman organization didn't cooperate with him in his experimental study of patterning in 1978, now considered one of the best of its kind.

"They tried to sue me," Zigler says. "They said only the institute had the right to study this method."

He studied it anyway and found that patterning doesn't work.

"The theory itself that all this is based on is more than suspect," Zigler says. "It's useless."

Presented with some of this information, Kitty and Randy Young decline to read it.

"I don't see what the point would be," Kitty says. "It's not going to change what I believe."

They believe Ryan is getting better, and they're not alone. The patterning volunteers say they wouldn't keep coming if they didn't see results.

"I missed three or four weeks (of patterning)," says Randy's friend Pam Delaney. "The difference in Ryan was huge."

Debbie Witter, a friend, agrees that the therapy "absolutely" works. "It's not a hope."

Dr. Ray C. Wunderlich Jr., a pediatrician in St. Petersburg, visited the Doman institutes throughout the 1960s and '70s. He started the St. Petersburg Institute for the Advancement of Human Potential in 1966, incorporating Doman's philosophy and many of his practices, including patterning, to treat mentally retarded children.

He says he still uses these treatments in his work.

"Almost everybody improves," he says. "They do get better. There's no question about it."

Kitty and Randy are "absolutely certain" Ryan will one day become a normal boy. The alternative, she says, is "too gruesome."

"If I do the entire Doman program and he's not totally fine, I'll go and find something else," she says. "I told myself, I'll quit when he's 40. If he's not totally fine by 40, then I'll quit."