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Posted by Sylvia on Sunday, January 11, 2004 (10:19:47)
The Saint Paul Pioneer Press 11/01/2004
By Maja Beckstorm
April and Eric Schnell refer to their son's life up to age 3 as the dark years. After birth, Tim was sickly. As a toddler, he rarely smiled and didn't return his parents' affection. At age 3, he spoke only 20 words.
But mostly, Tim cried. He cried and gagged when he touched gravel or grass or any rough surface. He cried when the phone rang, prompting the Schnells to switch off the ringer for good. He shrieked during haircuts. At night, his parents took turns checking into a motel or sleeping on the living room couch with earplugs.
At a certain point, April recalled, "It just hit me, there is something really, really wrong."
By age 3½, Tim had been diagnosed with autism. The neurological disorder is characterized by a need for routine, an obsession with patterns or numbers and difficulty communicating and picking up on the nuances of social interaction.
Tim is one of the 5,900 Minnesotans under age 21 who has been diagnosed with an autism spectrum disorder, a term describing autism and related disorders such as Aspergers.
In recent years, the number of children on the spectrum has shot up alarmingly. In Minnesota in 2002, the rate of autism in 6- to 11-year-old children was 17 times what it was a decade earlier.
Epidemiologists suspect the jump is the result of a broadened definition, better diagnosis and greater public awareness. But they admit there might simply be more autistic children than there used to be.
While the cause of autism remains a mystery, its symptoms can be alleviated with intensive early treatment. The Schnells are among a growing number of parents who have tried conventional therapies and also have embraced unproven, experimental methods. They have spent thousands of dollars and countless hours seeking help for their son.
The Schnells are among the lucky ones. Tim has, miraculously, his parents say, improved. At age 7, he's a curious, lively first-grader with intense brown eyes and a playful smile. His latest report card showed he's keeping up with his peers and doing especially well in language arts.
This is the path his family took.
THE DARK YEARS
When April Schnell looks back at Tim's first years, she now recognizes all the warning signs of autism. But at the time, she tried to convince herself that her first-born child was colicky or developing slowly. Deep down, she dreaded that she was doing something wrong.
At their Early Childhood Family Education class, Tim cried hysterically whenever April left the room. When the parents and children were together, he retreated to a corner to play with the same Fisher-Price parking garage week after week. The class instructor told April that she thought the family's nanny might be abusing him.
As a toddler, Tim was uninterested in other children. On a rare play date at a playground, he spent the entire time fussing with a garbage can lid. At a pool party, he was only interested in opening and closing the gate.
Like other parents with autistic children, the Schnells felt isolated.
"Other parents don't get it," April said. "They say, 'Oh I had a bad day, too.' And you'll think, 'No, you can't say that being a mother has been the worst experience of your life.' "
Eric Schnell agreed.
"There is this intensity of experience that is really hard to describe," he said. "When your kid is screaming nonstop, you're torn between this incredible love for this child who you created and then made the promise to take care of … and, well … loathing. I mean just like you've been invaded."
THE EVALUATION
A turning point came just after Tim turned 2. Eric and April baby-sat for a friend and saw how glaring Tim's delays were compared with the other child. Eric scheduled an evaluation. Tim scored in the lowest 1 percent.
"It was crushing," Eric said.
The Schnells were referred to the Special Children's Center in Hudson, Wis., where Tim was diagnosed with sensory integration dysfunction, a condition that often accompanies autism and is characterized by either extreme sensitivity or a seeming numbness to touch, movement, sights or sounds.
The diagnosis explained some of Tim's odd behavior. He was so sensitive to noise that he once woke with a start to the sound of an icicle dripping on the pavement below his window. He was so sensitive to visual stimulation that he screamed when his parents turned on the colored Christmas lights.
Tim started speech therapy, physical therapy and occupational therapy six hours a week, a regimen that lasted four years. To improve his sense of gravity, therapists coaxed him onto trampolines. To desensitize his skin, he played in plastic tubs filled with rice or noodles. Eric and April were taught to brush his entire body with a firm-bristled brush.
Eric felt relief. Relief that they finally had some answers. Relief that they weren't crazy. That they weren't alone. And that Tim's problems weren't as severe as those of other children they met.
But April was losing hope. The worst moment came one day at the clinic. Tim was hysterical, and to calm and control him, April had to lie on top of him. Lying there, she said she realized that from the minute she woke up in the morning until she closed her eyes at night, her life was held hostage by her damaged son.
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THE DIAGNOSIS
The Schnells stuck with therapy, despite seeing little change in Tim. Then, about six months into his regimen, the center's director mentioned that other families had seen improvements after removing dairy products from their children's diets. So, the Schnells tried that.
A couple days later, for the first time in his life, Tim slept through the night. He was 3 years old. Like many children with autism, Tim had suffered from gastrointestinal problems. Those, too, cleared up.
"Suddenly he became more verbal," said April. "And, he was willing to take more risks."
That was the good news. But also around that time, Tim received his formal diagnosis of autism. Though the Schnells had begun to suspect it, actually hearing it was devastating.
The word autism conjures up images of "Rain Man" or a child rocking in a corner. The stereotypes only sometimes match reality. While a fundamental difficulty in communicating lies at the heart of the disorder, autistic behaviors vary widely. One child might have a huge vocabulary while another might not speak at all. One might be mentally retarded while another might be brilliant.
Estimates of its prevalence range from 1 in 160 to 1 in 500. It is four times more prevalent in boys. Until the 1960s, it was thought to be caused by detached and uncaring "refrigerator" mothers.
Today, experts believe it is linked to defective genes. Some theorize that environmental factors, such as pollution or the mercury used in the production of childhood vaccines, can trigger autism in susceptible children. A recent study in the New England Journal of Medicine found no link to childhood vaccines, but many, including the Schnells, suspect they play some role.
Amid the swirl of competing theories, desperate parents swap anecdotes about the children who somehow get better. They cite studies about the benefits of intensive behavior-modification therapy and talk about the severely autistic child who, after treatment, entered mainstream kindergarten. There are books written by parents who have pursued unorthodox treatments and gotten results.
THE TREATMENTS
Those stories rekindled hope in April Schnell. By now, the couple had a second son, Matthew. Tim was almost 5, and April had quit her job to manage and research his treatment. She was especially intrigued by stories of children who improved after radically changing their diets and starting vitamin therapies.
First, she and Eric had to overcome their misgivings about trying treatments not endorsed by the medical establishment.
"It's scary," said April. "You feel you're going against the mainstream. If this really works, why isn't this more well known? I asked my pediatrician to look over this stuff to see if she saw any red flags. She said, 'I can't tell you to do this or not to do this.'
"You wonder, are we playing God here? Is our son a chemistry lab? What if we did some harm to him?"
Eric was even more skeptical and still is.
"We've had to think long and hard about our roles as parents," said Eric. "On the one hand, it is our responsibility to try everything we can to help our child. On the other hand, we didn't want to keep viewing our son as a project, as a thing that is broken and needs fixing.
"I mean, there comes a point when you just have to love your son, however he is."
The first step was relatively easy, at least ethically. April and Eric moved the entire family to a dairy-free, wheat-free and soy-free diet. In place of cow's milk, they used milk made from potato starch. They amassed recipes for meals like tapioca flour waffles. They pored over labels and called food manufacturers, tossing out things like their favorite pepperoni that contained trace amounts of wheat.
Then, they learned about a Chicago clinic that specializes in treating behavioral disorders, such as autism and ADHD, by trying to restore the body's chemical balance.
The nonprofit Pfeiffer Treatment Center made news in 2001, when founder and director Bill Walsh reported at the American Psychiatric Association's meeting that autism might be linked to a defective protein called metallothionein, which plays a crucial role in helping the body purge toxic metals, such as mercury and lead.
The Schnells had Tim's blood, urine and hair evaluated. Like other autistic children, he tested high for copper and toxic metals and low in zinc, calcium, magnesium and a range of vitamins.
They put him on supplements. They also started him on something called a metallothionein promoter, a cocktail of 14 amino acids, vitamins and minerals designed to enhance the body's ability to create its own metallothionein protein.
Walsh's theory remains unproven and isn't widely accepted by the medical establishment. But some autism experts see hope in his research and results. More than 1,500 children have been treated with the promoter, and a preliminary study of the first 50 patients found that nine out of 10 who stuck with the treatment showed improvement.
THE IMPROVEMENT
In two years, Tim, now 7, has made dramatic progress. The week he went off wheat, he came home from school and told his mother he wanted to show her something. He had never tried to draw her into his world before. He became more affectionate. His language improved. His tantrums subsided.
The Schnells credit not only the Pfeiffer treatment and diet but also Tim's therapies, including 1½ years in a social skills program at Fraser Child and Family Center in Minneapolis. He learned to name feelings, stood inside a hula-hoop to learn about personal space and practiced taking turns in games.
In 2002, Tim had improved so much that he was given a new diagnosis of Aspergers, which has been described by one expert as "having a dash of autism."
"He made some really nice gains," said Pat Pulice, director of Fraser's autism program. "Technically, you don't move from one diagnosis to another. But his language had increased, and his verbal skills were solidly in the average range. What specifically caused the change is hard to say."
Pulice figures about 10 percent of the children in Fraser's autism program are on a diet like Tim's, and she can't venture a guess as to how many might be trying the vitamin and promoter therapy. But she cautioned that not every child shows improvement.
"I've seen cases where it's made a big difference," she said. "But unfortunately there isn't a lot of scientific information about which kids might respond. So, it ends up being the parents' judgment about whether to try it."
It also is expensive. The Schnells say they could not have afforded it without the nearly $60,000 they have received from a state program designed to keep disabled children out of institutional care and that reimburses parents for part of the expense of treatment, respite care and other essentials.
THE CURRENT STATUS
On a recent night, the Schnells gathered around the dinner table for tacos, minus cheese and sour cream. Tim sat across from his 3-year-old brother. He said he wanted to go see the Arthur exhibit at the Children's Museum and instantly provided its closing date. Like many children with Aspergers, he has a remarkable memory and an affinity for facts and numbers.
After he is excused, his voice suddenly squeaks through the intercom in the next room. "Attention!" he calls out. "I got my report card today."
"That's great Timmer," calls out his dad. "How did you do?"
"We'll never see unless we open it," said the disembodied voice.
His parents clear a space on the table to pore over the papers. Tim attends first grade at a Roseville charter school with a large percentage of children with disabilities. His first report card shows average scores and a "satisfactory plus" in language arts.
"There were times when we didn't know if he would talk," said Eric, starting to choke up. "So this is … well … momentous."
He turns to Tim, who is squirming with delight. "You got some pluses, Wow! You must be feeling pretty proud of yourself."
Not all the signs of autism have disappeared. Tim acts young for his age. His favorite cartoons, like "Berenstain Bears," are ones that usually appeal to younger children.
He has a diagnosis of a nonverbal learning disability, which means he has trouble summing things up or recognizing relevant detail. He can recite snatches of dialogue verbatim from television shows, for example, but he can't tell you the plot.
He has motor and coordination difficulties that make it hard for him to write. His need for routine is less but still strong. He takes the same route through McDonald's Playland every time and always lines up his toy cars the same way.
And like other children with an autism spectrum disorder, he has trouble reading social cues. One day last year, he came home from the public school he attended and told his parents he had poked a boy. The boy had said he would put Tim "on the floor." Unable to make sense of the exchange, Tim asked his parents: "Isn't that funny?"
His parents have overheard other children say they don't want to play with Tim or don't like him. It breaks their hearts because they know as he gets older, social interactions will become more difficult.
Inevitably, the Schnells worry about the future.
"Will he be able to support himself?" said Eric. "Will he and his brother keep the relationship they have now? Will he need someone to take care of him when he is older? I want to hope for the best and plan for the worst."
For now, they try to take it one day at a time. And celebrate the son they feel they are getting to know.
"Sometimes, I tell myself he's making up for lost time," said April. "Before, he never came running over to me to say, 'Mama! Mama! Come be with me!' He didn't like to be held or hugged. But now, Tim will come and lie in my bed and take my arm and put it around him. And he'll tell me, 'This feels so good Mama.'
"I don't know how to describe it. It's like being lost in a desert and being handed a cup of water. I didn't know how much I was missing it until he started giving it back."
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