[Fwd: Snake Oil Treatments for Autism]

[Guest guest]

Snake-oil treatments for autism exploit desperate families; spotting

the frauds

http://www.poconorecord.com/apps/pbcs.dll/article?AID=/20071223/NEWS/712230324/-\

1/NEWS01

By Dan Berrett

Pocono Record Writer

December 23, 2007

In 1882, a product called the electric flesh brush, which had

magnetized iron rods in its handle, promised cures for a host of

maladies: malaria, paralysis, indigestion and even liver and kidney

trouble.

An advertisement at the time boasted a testimonial from the sister of

Liza Land , whose chronic rheumatism was cured by the brush

after traditional medicine failed.

The story of her recovery & mdash; and the product's seemingly

limitless applications & mdash; may seem unbelievable to modern eyes.

But, in a sense, we remain equally believing today. That is according

to a historical analogy developed by Dr. Coplan, a

neuropediatrician in Rosemont who shared his hypothesis with staff

and families at Colonial Intermediate Unit 20 during the fall.

Families dealing with autism are especially vulnerable.

Autism, a group of developmental disabilities marked by difficulty

with social interactions and communication, affects one in 150

children. The ability of people with autism to think and learn vary

widely, as do their behaviors.

" They're looking for people who can offer them hope, " Coplan said of

the families. " They want to go somewhere where someone can offer the

promise of a cure. "

The Centers for Disease Control and Prevention says flatly that there

is no cure for autism. Intensive and early behavioral, verbal and

communication therapies tend to have the most success, doctors say.

And in most cases, some degree of improvement tends to occur over

time.

But the promise of a wholesale cure can still easily be found on book

shelves, at the pharmacy and online.

Some say to strip your child's diet of gluten and casein, which are

proteins found in wheat and milk, respectively. Pull heavy metals

from the blood, a practice called chelation. Soak a child in clay

baths, ask them to swallow amino acid capsules or take breaths in a

hyperbaric oxygen chamber.

As many as one-third of children with autism may have tried these

treatments. And several families will see benefits. But up to 10

percent of the treatments are considered dangerous, according to the

CDC.

A clinical report from the American Academy of Pediatrics, of which

Coplan is a fellow, recognizes this yearning, even while it remains

skeptical.

" It's important for pediatricians to maintain open communication and

continue to work with these families even if there is disagreement

about treatment choices, " Dr. Myers, author of the report,

wrote. " At the same time, it's also important to critically evaluate

the scientific evidence of effectiveness and risk of harm. "

While Coplan was careful not to cite any specific treatment by name,

he warned parents to be watchful for certain traits that many have in

common with one another & mdash; and with the electric flesh brush:

Our product will never hurt, only help: Quite often, a treatment's

backers will promise that their cure only helps, and cannot possibly

harm the user. Scientifically tested medical treatments do not make

the same claim.

Endless applications: Does the product claim to cure a range of

illnesses or syndromes? Are they equally adept at fixing metabolic,

respiratory, circulatory, neurological and bone problems? Can they

cure diseases and genetic disorders alike? " If something sounds too

good to be true, it usually is, " Coplan warned.

Reliance on testimonials: Just like Liza Land 's sister, be

wary if anecdotes and testimonials from interested individuals are

the only real evidence for the treatment.

" Ask yourself this: Who else besides the people who are buying and

selling this therapy are advocating it? " Coplan asked. " Is there

anyone who hasn't bought or sold it who is pitching it? "

Testimonials are naturally biased. Those who think the treatment

helped them will come forward, while those who were left bitterly

disappointed will move on.

" You're looking at a very selective subset, " Coplan said. " You have

no way of knowing if it's 1 percent of the sample or representative. "

Lack of scientific study: The best scientific evidence is a

controlled experiment. That means two sample groups of people with

similar mixes of age, gender and socio-economic factors. One gets the

treatment, the other does not. Study them before and after treatment

is administered. Do the results of the two groups differ? Is this

difference statistically higher than what would occur through simple

chance?

Expectation bias: Sometimes, faith and hope that a treatment must

work can deceive the patient or parent into seeing benefits where

none actually exist. Expectation bias sets in & mdash; we see what we

expect to see.

Coplan cited his own work as a researcher during the development of

secretin, a pancreatic hormone that was rumored to cure autism. The

researchers gave one group secretin and the other salt water, without

telling parents whose children received which treatment. Coplan asked

the parents which one they thought their child received.

" The parents' guesses were no better than tossing a coin, " he said.

" If they were blind to what their kid was getting, they couldn't

tell. "

Those who provide the treatment are lone wolves: " People who are

heavily invested in something that is a quack therapy style

themselves as underdogs of the conventional medical establishment, "

Coplan said. " They almost revel in the role of being oppressed

underdogs. "

The lone wolf argument is premised on certain assumptions, as summed

up by Harvey Young in his book, " The Toadstool Millionaires: A

Social History of Patent Medicines in America before Federal

Regulation. "

" Doctors & mdash; at least some of them & mdash; did not want to cure

people. They got more profit from keeping the patient sick, " Young

wrote. " (T)hey were blind to the one dazzling new discovery that was

destined to end forever the pain and suffering of disease. "

For all his warnings, Coplan & mdash; and the CDC, for that matter

& mdash; do not dispute that individual children may sometimes benefit

from some alternative treatments. But their lack of medical proof

should be a warning sign.

There are also what he called opportunity costs. " Every hour and

dollar you spend on X are hours and dollars you're not spending

somewhere else, " he said.

The final piece is guilt, he said. While parents may gravitate toward

whoever is going to offer them hope, what happens when that miraculous

cure never materializes?

" If the kid doesn't get better, " Coplan said, " the parents get

blamed. "