Parents turn to alternative autism treatments
Tuesday, January 06, 2004 (21:16:46)

Posted by Sylvia

San Mateo County Times 05/01/2004

By Melissa Schorr

IT was the day care center workers who first noticed the problem with Kaleb.

At the Jewish Community Center in Palo Alto a child's piercing scream filled the air. The other children rushed over, concerned and alarmed. Their classmate sobbed indignantly: Someone had stepped on her hand.

Only Kaleb, nearly 3, was unfazed. He continued to sit by himself, as usual, preoccupied with carefully lining up toy cars in a pin-straight row.

Until then, his parents, Karla and Adam Levermore-Rich of Palo Alto, hadn't noticed anything was wrong. As first-time parents, busy holding down full-time jobs in the high-tech arena, they had figured Kaleb's lack of verbal skills was due to confusion over having a Spanish-speaking nanny and English-speaking parents.

A teacher gently suggested Kaleb should be examined by the Children's Health Council, a non-profit diagnostic center for children with disabilities in the South Bay. Doctors took note of Kaleb's failure to respond when his parents left the room, his lack of pain when hot coffee spilled on his hand and his unsettling habit of piecing together puzzles picture-side down.

After a month of tests, Kaleb and his family finally received the devastating diagnosis: moderate to severe autism. At first, it was "almost a relief," Karla recalls. "I felt, now, I know what's going on, now I have something to work with."

But within days, the reality of Kaleb's prospects sunk in. Karla had kept a journal for Kaleb throughout her pregnancy, hoping he would read it someday as an adult. Now, she realized, he might never read it, or worse, would feel no emotion if he did. "I started crying," she recalls. "I thought, his future has been taken away."

A diagnosis of autism can be a parent's worst nightmare come to life. A once happy, babbling baby turns, seemingly overnight, into a mute and aloof toddler who will thrash his head against the wall for stimulation, but cringe from a mother's loving touch.

Once blamed on "cold" mothering, autism is now understood to be a neurological development disorder with a genetic basis that runs along a spectrum from mildly impaired to severely handicapped.

But where parents once accepted the prognosis as a lost cause, many are now holding out for the tantalizing possibility of recovery, either through new approaches in standard medical care or the sweeping promises made by alternative therapies.

"I like the word recovery better than cure," says Karla. "Autism never goes away, you can't make their brains the way other people's brains are. But you can help them cope in the world."

The brain teaser currently stumping experts is why more and more children are being diagnosed with autism. The rate of cases nationally has skyrocketed from one in 2,500 children in the 1970s to 1 in 250 children today, and is diagnosed more commonly in boys than girls. Most experts believe this is a true rise in incidence, rather than just an increase in diagnoses due to better awareness.

California now provides state-funded services to 23,000 autistic kids, twice the number from only five years ago. Of those entering one of the state's 21 regional centers which provide services for kids with developmental disabilities, 40 percent have autism, up from 2 percent in previous decades.

"What we have is an epidemic of autism," declares Jim Burton, director of the Regional Center of Oakland. "You have families looking for answers. No one is giving them any."

Theories abound for the increase, but researchers' best guess is that autism is a genetic disorder being triggered by something relatively new in our environment. What that may be is a mystery.

The most hotly-contested theory has blamed a series of vaccinations for measles, mumps and rubella given to young children that contain mercury, a known toxin. But those accusations have been subdued -- although not totally quashed -- by recent epidemiological studies negating the link.

"The bottom line is if somebody asked me, give me your best guess what causes autism, at this point, I don't even have a lousy guess," admits David G. Amaral, research director of the MIND Institute at the University of California, Davis, a center devoted to autism research. "There are so many plausible reasons, it's frightening."

If the cause for autism is still unknown, a cure is even more elusive. Drugs often prescribed, such as Prozac or Ritalin, only treat the symptoms, such as anxiety or hyperactivity, rather than provide true salvation.

In November, the federal government announced plans for a full-scale attack, devoting funds to earlier screening and better treatments, with a goal of seeing fewer cases within a decade.

Only official treatment

Currently, the only intervention given the official stamp of approval from the medical community is a kind of behavioral therapy known as early intervention or applied behavior analysis (ABA).

First described by Dr. O. Ivar Lovaas of the University of California, Los Angeles, in a landmark study in 1987, nearly half the autistic children who received the therapy were able to be mainstreamed into a "normal" first and second grade class.

Replicating this outcome has become the holy grail for researchers and parents. "Our doctor said, get thee to an ABA program," Karla recalls. "They said it's the only technique proven to be effective." During the training drills, which can require as many as 40 hours a week, a therapist or parent repeatedly requests the child to behave correctly and rewards them with something the child fancies, like a sweet.

Karla was dubious at first, comparing the treatment to obedience training a puppy. But after finding the right therapy, Kaleb quickly turned the corner. "The day he started, he learned a dozen words," Karla recalls. "It was a positive experience." Karla has become a staunch advocate, running an ABA training group in the Bay Area for Parents Helping Parents, an autism support group based in Santa Clara.

However, the treatment works best on those only mildly impaired. Unlike autism, Hollywood-style, as portrayed in the film "Rain Man," where Dustin Hoffman's character has savant-like mathematics abilities, the vast majority of autistic children suffer from mental retardation. Only a quarter will respond strongly to the treatment.

Many parents, frustrated and desperate when their children don't respond to ABA, are seeking alternative treatments for their children ranging from dietary adjustments to highly unorthodox methods.

"Parents are saying, 'we are not waiting,'" says Elizabeth Horn of San Mateo, mother of Sophia, an 8-year-old girl with autism. "Every day is a day you miss with your kid."

Horn has embarked upon a project documenting autistic kids once deemed hopeless who she says have recovered using alternative therapies. She is filming a documentary she hopes will be aired this summer on PBS-KQED, entitled "Finding the Words," focusing on half a dozen Bay Area children with autism whose parents refused to give up on them.

One of the most popular alternative treatments is known as the Defeat Autism Now! (DAN!) protocol. Developed by a San Diego doctor with an autistic son, the treatment is rooted in observations that many autistic children suffer from severe gastrointestinal ailments and food allergies that could be contributing to their tantrums and inability to connect.

However, one of its tenets blames mercury for autism and recommends detoxifying the body of metals, an unproven and controversial approach known as chelation. "The traditional medical community pooh-poohs these things," says Lynne Mielke, a doctor who recently opened Spectrum Disorders in Pleasanton, the first clinic for autistic children in the East Bay specializing in the DAN! protocol.

"The current standard of care doesn't look at underlying biochemical abnormalities that might contribute to the problems these children have," Mielke says. "I firmly believe what we are doing will be the standard of care in 10 to 20 years -- but that would be too late for children today, such as my son."

Turning from traditional mindset

Mielke, a clinically trained psychiatrist, begrudgingly turned her back on her traditional medical mindset after it proved useless in helping her son Connor, 5, who was diagnosed with autism two years ago. Since she opened the clinic in September, she has cared for some 100 autistic patients.

Some autism researchers are cautiously optimistic about the dietary treatments, which consist of restricted diets and a range of nutritional supplements, while groups such as the American Association of Pediatrics are flatly disapproving.

Aside from this approach, there are even more extreme alternative therapies not condoned by the medical establishment. One form of therapy, which physically restrains the child, can be deadly, while others, such as swimming with dolphins, are prohibitively expensive and unproven.

"I understand why parents are going to want to try all kinds of things," says UC Davis' Amaral. "But we want to take into consideration the risk when trying things that affect the metabolism of children. Some of these could be tried with the best intentions, but the children could be worse off."

But Horn is convinced she's on the right track. Every day, in her sprawling San Mateo home, she opens her kitchen cabinet, dons a protective mask to avoid the fumes and doses Sophia with dozens of supplements based on this protocol, such as B-12, colostrum, GABA, alpha lipoic acid and elderberry.

The supplements aim to remove metals like mercury from Sophia's system, boost her immune system and correct for dietary deficiencies. After three years, however, Sophia began throwing tantrums and screaming during sessions. **She went as far as she could go,** Horn recalls. **She didn't see the relevance, she was bored. **>

The family turned to a private doctor in Maine, who prescribed the complicated mixture of supplements after intensive lab tests. For two years, Sophia has been on a gluten- and casein-free diet, avoiding the proteins in wheat and dairy. She subsists on foods such as corn-based cilantro pizzas and rice milk, which Horn credits for much of her progress.

Thriving as an autistic child

Today, Horn says, Sophia is thriving at the Wings Learning Center, a private school for autistic children in San Mateo. On a recent day after school, Sophia bounces into the room, a wide-eyed child with a bouncing blond ponytail. Rather than shrinking from human contact like many autistic children, Sophia greets her visitor with an unsolicited kiss on the cheek. Upon request, she dances around the room with her nanny, Susana Alcaraz, squealing to express her pleasure.

"I will not give up until she's where she needs to be to have a happy, healthy life," Horn says confidently. "I know one day she and I will have long chats about what it feels like to (have autism)." The Levermore-Rich family followed almost the exact opposite course of treatment for Kaleb.

They tried the gluten-free diet for awhile, but didn't find it was helping. "We didn't see progress to warrant all those treatments," Karla says. Instead, they stuck primarily with ABA therapy, with excellent results.

Today, at age 9, Kaleb has been mainstreamed in a fourth-grade classroom at Palo Verde Elementary School. Above average academically, he has an aide to shadow him and coax him on his still-shaky social skills.

A skinny kid with grayish eyes, prominent ears and only a wisp of lisp, Kaleb matter-of-factly greets a visitor, warmly showing off his hamster, Hermie, his comics and his Harry Potter book. Despite his achievements, Karla concedes that a totally mainstream life for Kaleb is still uncertain. But she, too, remains hopeful.

One day, she heard Kaleb giggling madly to himself. She turned to find him reading a Magic Tree House book, moved to laughter by the pirate's antics. "He got it," she says simply, a mother's relief ringing in her voice. She knew at that moment Kaleb's journal would not be in vain.