'Epidemic' of autism: Parents turn to alternative cures as number of cases skyrockets

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http://www.timesstar.com/Stories/0,1413,125%7E1549%7E1870586,00.html

 

'Epidemic' of autism: Parents turn to alternative cures as number of cases

skyrockets

By Melissa Schorr - STAFF WRITER

THE day care center workers 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 lacked verbal skills because

he had a Spanish-speaking nanny and English-speaking parents.

 

 

 

 

 

 

 

 

 

 

 

A teacher gently suggested Kaleb should be examined by the Children's Health

Council, a nonprofit 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 Levermore-Rich 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.

Levermore-Rich 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, 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 now hold 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 Levermore-Rich. " 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 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 because of better

awareness.

California 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.

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, like

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.

" With early intervention treatments, children have been able to go back into the

regular classroom, " says Burton. " It's made significant changes in their lives. "

" Our doctor said, get thee to an ABA program, " Karla Levermore-Rich 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. Levermore-Rich was

dubious at first, comparing the treatment to obedience training for a puppy. But

after finding the right therapy, Kaleb quickly turned the corner.

" The day he started, he learned a dozen words, " Levermore-Rich recalls. " It was

a positive experience. "

Levermore-Rich 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

Hollywood-style autism, 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,

seek 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 KQED, " Finding the Words, "

focusing on half a dozen Bay Area children with autism whose parents refused to

give up on them.

" What's the difference between a child that gets well and one who doesn't? " Horn

asks. " A relentless parent. "

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 about 100 autistic patients.

" Parents don't have to accept the diagnosis and feel like they're doomed

forever, " Mielke says. " There is something they can do. We're not claiming we're

going to cure your child. We do hope we can improve your child. "

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.

" We tweak it to put her back where she was, so then her system has a chance to

kick out stuff that doesn't belong, " she explains. " I think it can't hurt. "

Sophia did receive traditional behavioral therapy after she was diagnosed with

an unspecified form of autism at age 2. Horn and her husband, Zach Nelson, a

Silicon Valley CEO, assembled a team of a dozen therapists who worked intensely

with Sophia for five hours a day at a cost of $4,000 a month. 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 glutin- 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 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 blond ponytail. Rather than

shrinking from human contact like some 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 Levermore-Rich 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, Levermore-Rich 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. You can e-mail Melissa Schorr at

mschorr or call her at (925) 416-4814.

Resources

Children's Health Council: www.chconline.org, (650) 688-3625

Parents Helping Parents: www.php.com, (408) 727-5775

Wings Learning Center: www.wingslearningcenter.org, (650) 342-8753.

California Department of Developmental Services:

www.dds.ca.gov/autism/autism--main.cfm, (916) 654-1690

Developmental Spectrums: www.developmentalspectrums.com, (925) 846-6300

 

 

 

 

 

 

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