Raising Joshua

Parents bet on an improbable cure for one of childhood's most mysterious plagues.

Autism Scott Shoemaker Angela Shoemaker Joshua Shoemaker
Joshua was the second son, ushered into the world with all the hope and promise of the first. He would be the middle child, just like his dad. Destined to play football with his big brother, protect his little sister.

But almost immediately, there were signs of trouble. He had constant diarrhea and rashes all over. He was allergic to corn, tomatoes, and seemingly everything in his mother's milk. At six months, he was spinning himself at high speeds in his baby saucer. By the time he was a year old, he was walking on tiptoes and flapping his hands like a pigeon with broken wings.

A year later, he still wasn't talking. He wouldn't say Mommy or turn around even when his dad shouted his name. Instead, he stared off into space or laughed at nothing, as if he were amused by ghosts. Each month was more discouraging than the last. Instead of growing up, he seemed to be standing still. At three, he couldn't drink from a cup or hold a fork or catch a ball. He could neither point nor wave.

"It was devastating," remembers his dad, Scott Shoemaker. "He was getting to the point where he was just kind of dropping out of our world completely."

It was not a calamity Scott and his wife, Angela, were willing to swallow. They are a power duo -- blond, driven, relentlessly polite, as if the prom queen had married her favorite football player. Their three children were born exactly two and a half years apart, each christened with names that start with "J." Having a toddler who vomited more than he talked wasn't part of the plan.

So even when they heard the doctors' words, they weren't inclined to believe. "I almost chuckled," Shoemaker says of the day his son was diagnosed with autism.

Joshua's only shot at improvement, the doctors said, was behavioral therapy that costs upward of $60,000 a year -- and the waiting list was a year long. Even if Joshua made it through, there was no guarantee he would ever be normal.

Until his son got sick, Scott Shoemaker's knowledge of autism was limited to Rain Man. But when he and his wife sought guidance in cyberspace, they discovered a dizzying new world.

The conventional medical websites -- the Centers for Disease Control and the Cleveland Clinic -- say that autism is a confounding disability. The disorder affects the brain, making it harder for children to learn, grow, play, and communicate. Each case is different, but for some kids, even using the bathroom or giving a hug comes with a struggle.

Some, like renowned animal scientist Temple Grandin, have hidden talents, while others will be lucky to get a job at the mall. Many will rely on government checks for the rest of their lives, and the most severe cases end up in group homes. There is no cure, and the disorder's causes are still largely a mystery. Everything from genes to environmental toxins has been blamed for the condition, which is estimated to affect 1 in every 166 children.

But surf a little more, and you'll find an entirely different explanation. In recent years, a small army of parents and doctors have latched onto the theory that autism is caused by mercury poisoning -- specifically, the mercury preservative found in some childhood vaccines. In small kids, mercury can cause many of the same symptoms that autism is known for: extreme shyness, tantrums, attention problems, poor language skills.

Mainstream studies have dismissed this claim, yet its supporters are convinced that the feds and the drug companies are covering up the poisoning of children. Like the holistic crowd, they distrust the words of Big Pharma and the health-care industry, believing that greed supersedes devotion to what's right. If the government admitted that vaccines were hurting babies, public-health campaigns around the world would be turned upside down, the cost of lawsuits insurmountable.

So the mercury crowd has developed its own science, testimonials, and damning paper trail to back its claims.

It's not hard to see why parents believe. When your child suffers, you're eager to find someone to blame. Mercury poisoning is a much easier explanation to swallow than a mysterious disability arising from the netherworld of the gene pool.

Besides, if a boy's brain has been altered by chemicals rather than by genes, he can be cured.

Dr. Phillip DeMio knows this desperation well. His only child was a "beautiful, healthy baby" until he received his 18-month vaccines, which included Hepatitis B. Suddenly, the boy was constipated and had trouble paying attention. He stopped talking, would eat only half a Pop-Tart a day, and screamed through the night. DeMio, an ER doctor who had treated scores of sick babies, could do nothing to help him.

One of autism's cruel tricks is that it strikes boys more often than girls. In this way, it attacks something deep and vulnerable in a father's soul: his chance to raise a son. Even when DeMio discusses the dry elements of science -- biology, chemistry, the reasoning of cells and blood -- his anguish blankets everything. He leans forward, lips twisting, body tense with outrage.

"They murder the family," he says of the disorders. "They murder the finances of the family." And it's all caused by the mercury in common childhood vaccines, he believes.

Other doctors didn't see it that way. They told DeMio that his son had a mental disorder and that he would just have to cope. But DeMio knew better. He had worked with metal-poisoned patients. He knew what mercury could do to a kid's brain.

So he took matters into his own hands. Four years ago, he left the safety of Cleveland's hospitals and dedicated himself to the crusade. From his tiny office in Seven Hills, he now prescribes the creams and pills that have become the Holy Grail for his son, as well as Joshua Shoemaker and hundreds of other patients.

As he talks, he takes out a syringe and squeezes a sulfur-scented cream onto his wrists, rubbing vigorously. A few minutes later, he reports that he can taste the medicine working.

For decades, a process called chelation has been used by hospitals to treat kids with lead poisoning. Through pills or an IV, it pulls heavy metals out of the body to reduce the long-term damage to the child. DeMio's cream is supposed to do the same, but more slowly. It's absorbed through the skin, just as nicotine enters a smoker's body through a patch. Once the mercury and other heavy metals come out, the theory goes, autistic kids should improve.

Joshua Shoemaker, his parents say, stopped his compulsive spinning as soon as he started treatment. In a few days, he hugged and kissed his sister. Within five months, he was pointing and talking to the camera on a home video. After a year, he could speak in complete sentences, answer questions, and attend preschool.

His parents began to taste the impossible: a cure.

Though conspiracy theories are usually associated with gullible minds, the Shoemakers have some powerful allies.

Congressman Dan Burton (R-Indiana) recently completed a congressional investigation that supported the link between autism and mercury. Last year, New York Times reporter David Kirby published Evidence of Harm, a book that pushed the CDC into a suspiciously cautious defense of its actions.

Months later, Robert F. Kennedy Jr. detailed the government's alleged coverup in Rolling Stone. He described a secret meeting in which top scientists and health officials discussed a study linking the increase in childhood vaccines to the explosive rise in autism in the last 15 years. Kennedy alleged that Dr. Tom Verstraeten, the CDC scientist who carried out the study, later changed his findings. The government claimed that the original data had been lost.

This is one of the reasons DeMio is angry: He says that Verstraeten should be "prosecuted for atrocities against humanity."

Parents who believe the mercury thesis launched Generation Rescue to spread the word. Another organization, Defeat Autism Now!, is dedicated to "biomedical" treatments, such as creams and vitamins, and eager parents can find scores of doctors all over the country who subscribe to its theories.

Although there are no firm numbers on how many kids are using the treatment, the figure is presumed to be in the thousands.

That includes Lenny Hoover, a six-year-old from Florida, who was able to attend regular kindergarten after chelation treatment. And the Louisiana boy who went from being "nonverbal" to speaking complete sentences, according to his mom. And the 20 patients that a North Carolina doctor says he has helped to recover from autism.

Today, four-year-old Joshua Shoemaker can ride a bike with training wheels and play football with his brother. He smiles and hugs his dad after work. His parents chart his progress in PowerPoint presentations and video clips, which they are eager to share.

They have become evangelists for the cause, speaking of chelation in worshipful tones, like TV housewives selling detergent. They run a support group in Columbus and an online chat group, and they tour the country speaking at conferences. They even did a spot on Dateline. They hand out DeMio's cell-phone number, praise the pharmacy that sells the cream, and urge a reporter to read Evidence of Harm. They far prefer making their new pitch to discussing the past. "It's one of those things you don't want to remember," Scott says of his son's illness.

But there is a downside to their magic bullet. First, there's the cost. Scott Shoemaker estimates that he shells out $250 a month for the cream, while the vitamin supplements -- which Joshua needs to replace essentials flushed out of his body -- run a few hundred to a few thousand dollars more. Granted, it's much less than he'd pay for conventional therapy, but it's not cheap.

Also, the cream is not as innocuous as it appears. When he uses it, Joshua acts as if he has a fever. It can make him tired and grouchy. Sometimes his speech slurs, and he gets spacey. "It's very tough on your body," Dad explains.

At first, the Shoemakers applied the cream every other weekend. Now they use it every weekend. They put it under his arms, on his ankles, on the tops of his feet -- six times a day, sometimes in the middle of the night.

They are amateur scientists now. When Joshua goes to the bathroom, his parents analyze what comes out. Its color, how runny or solid its shape -- everything is a signal of how well the medicine is working. The Shoemakers collect samples every couple of months and send them to DeMio.

Usually, Joshua feels better by the time the school week starts, and that's when his parents see the biggest improvements. His sentences get longer, and he uses bigger words. He'll play more, run up to other kids and introduce himself. And despite the grouchy weekends, the gains seem permanent.

To many supporters, stories like Joshua's are all the proof they need. Alan Israel has staked his livelihood on them.

From his Lee Silsby Compounding Pharmacy in Cleveland Heights, Israel produces the cream that healed Joshua. He claims to serve 1,500 patients all over the world, from Singapore to South Africa. On this October morning, he's bustling around his shop, preparing to leave for a Defeat Autism Now! conference in Seattle, where he will surely meet more customers. Meanwhile, his website is full of the stories that parents yearn to hear.

"Prior to treatment . . . he had been silent for the past 2 years," reads one description of a five-year-old. "After three days of treatment, he told his father that he loves him."

Another three-year-old boy hated the feeling of water on his face. A few days after chelation, he took a 30-minute shower. He started talking more, his vocabulary increased, and "He is now able to dress himself for the first time."

Israel even gave the cream to his grown son, who was having trouble working 40 hours a week. Now he works 60.

But what his glossy brochures don't mention is the fact that his treatment has never been studied on a large scale. Researchers at the Southwest College of Naturopathic Medicine have started a study of chelation's effect on autistic kids, and the National Institutes of Mental Health recently launched another, but neither is finished.

This doesn't concern Israel, who harbors a robust skepticism for the labored ways of mainstream medicine. "They're always looking for hard medical data," he says. "Studies are very time-consuming."

But it does worry other people. Modern science is based on the idea that treatments must be studied ad nauseam, then reviewed, published, and studied some more. Chelation has broken all the rules.

Begin with the link between autism and vaccines. According to the CDC, "The vast majority of studies, which have involved hundreds of thousands of children in a number of countries, have failed to find any association between exposure to [mercury] in vaccines and autism; that is, they have failed to find any evidence of harm." (As a precaution, however, mercury has been removed from most childhood vaccines.)

And even if you believe that autism is caused by mercury, a cream is unlikely to fix it. According to Dr. Nina Sand-Loud, a pediatrician at Akron Children's Hospital, mercury poisoning is generally permanent. Removing the metals won't reverse the damage, and flushing them out can cause kidney and liver damage.

Even the anecdotal evidence is questionable. Most of the online testimonials are anonymous, and their definition of "success" varies widely. Some supporters, like James Adams, a chemical-engineering professor studying chelation, admit that the treatment didn't work for their kids.

Others are disenchanted. Dr. James Laidler, an anesthesiologist from Oregon, says that he was duped into giving chelation and other alternative treatments to his sons. "I now realize that the thing the 'alternative' practitioners are really selling is hope -- usually false hope -- and hope is a very seductive thing to those who have lost it," he writes in an essay.

Over three decades of working with autistic kids, Leslie Sinclair, director of the Cleveland Clinic's Center for Autism, has seen the fad cures come and go. Parents have used special glasses, vitamins, diets, oxygen chambers, and hormone injections. To her, chelation is just the latest entry in the parade of false hope.

"The science doesn't move fast enough, and our parents and our kids are not willing to wait," she says.

She understands their frustration. The Clinic's program costs $62,000 a year, and the waiting list is long. Kids attend special classes at a center in Shaker Heights for about 30 hours a week, year-round. In preschool, it's one-on-one therapy that teaches basics like drinking from a straw, using the bathroom, playing with toys. The younger children are when they enter the program, the better their chances of later attending a regular school. For older students, the goal is to hold down a job and live independently.

Tuition is rarely covered by insurance, but most students are referred by their public schools, which qualifies them for $21,000 a year in state aid.

The school has been open for six years and has its share of success stories. One mom told Northern Ohio Live that her son was potty-trained and had learned to feed himself, play, and point. According to Sinclair, between 40 and 60 percent of her preschoolers return to regular schools or less specialized programs.

In the preschool classrooms, therapists crouch beside their pint-sized charges, playing with plastic horses, sifting through flash cards and picture books. From every corner, you can hear overly enthusiastic voices trying to instill life's basics: Do you want to read? How old are you? Last name?

It all must be documented on an ever-present chart, including how long it takes a toddler to learn how to eat a fish stick. There are lots of hugs. A few tantrums. An overwhelming sense of patience.

It's a long, tedious process, but according to Sinclair, it's backed by thousands of scientific studies -- precisely the evidence that Israel's cream lacks. And this is what worries her. She's careful not to insult alternative treatments, but she doesn't want autistic kids used as guinea pigs either.

Debbie Ranallo, mother of a seven-year-old autistic boy, is equally cautious. She doesn't believe that her son was poisoned by vaccines; he was simply born this way. So she's used the vitamins and special diets. But she's afraid of the cream. She's heard it can harm the liver and worse. "It is a drug, right? I'm more for the drug-free route."

Try telling that to the Shoemakers. It's possible, after all, that Joshua's recovery was a fluke and would have happened over time, without the cream. They don't care.

"If [the cream] is quackery, then I will be a quack all day if my son is clearly benefiting from it," Scott writes on an autism blog. "If it is a 'placebo,' as some say, then I can attest that it is the most effective placebo around, and I want more of it for my son."

So the Shoemakers spread the word. "Our whole mission is to make sure that parents are aware of this option," Scott says. He cites Joshua's appearance on NBC and promises that if Scene publishes a good article, he'll make sure that it gets national play.

Somewhere in all this, Joshua vanishes. At his uncle's house in Akron, he appears briefly to pose for the camera, smile, and dazzle guests with his towheaded charm. But his mom soon sweeps him away, leaving Dad to deliver the sermon.

One of Shoemaker's favorite stories is about the day he realized the cream was working. He was at his older son's football practice when Joshua joined in, stretching and doing laps. Afterward, Scott thanked the coach for letting his autistic son practice. The man was shocked. He had no idea that Joshua was sick.

"When I saw him playing football, it was like, 'He's gonna be OK,'" Shoemaker remembers.

Now it's a matter of pride. In a world with no cure, the Shoemakers believe they've found the next best thing. As Scott says, "I can't prove that it works, and they can't prove that it doesn't." And shame on anyone who tells them otherwise.

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