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Autism treatments may put kids at risk

Autism treatments may put kids at risk

By Ilene

For anyone who knows children with autism, you might find this fascinating.

MED-AUTISM

I’ve seen some of this first-hand in my own search of information on autism. Some of the various treatments are worrisome on several levels. (Others are just expensive.) The results from plentiful arrays of lab tests are questionable, but used to show "chemical imbalances," which then are said to require treatment. I would question whether the results are accurate, but even more to the point, whether there is any need to "treat" these questionable lab results.

Assuming some of the measures are accurate, the studies haven’t been done to assess what the results mean. The information provided is correlational information, which is not cause and effect, and certainly does not translate further to prescribing safe, effective therapies — the gap is unbelievably enormous, but routinely crossed over with hope, and a long list of supplements to buy.

After questionable lab test results are used to give diagnoses and recommend untested, unproven treatment regimens, another cause for concern is that the "treatments" are similarly untested.  So for example, even if a biochemical measure of a chemical in the blood was accurate (a generous assumption), there have been no double blind studies to show that the particular measure is in fact a problem, let alone a reason to engage in the proposed "treatment." There are no credible studies to show the treatment is effective. It could actually be harmful. The "studies" cited seem to be long lists of case reports, correlations found by blood tests (with no proven meaning), coupled with semi-scientific, semi-logical theories. The semi-scientific aspect of the process gives parents a false sense of understanding what they’re being told, because it may make sense. They don’t have the background to know what they don’t and can’t know.

In medical science, a logical theory and a viable treatment option are not even close. Case reports and theories are NOT adequate scientific studies.  They can be wrong, twisted, manipulated, made-up, self-serving reports used to promote untested treatments by appealing to the parents’ hopes, preying on desperation, and promising to empower them to help their children. Sadly, this is how I would characterize many alternative biomedical treatments for autism at this time.

Autism: Kids put at risk

By Trine Tsouderos and Patricia Callahan, LA Times

Desperate parents try alternative therapies that aren’t based in science and may hurt kids, an investigation finds.

James Coman’s son has an unusual skill. The 7-year-old, his father says, can swallow six pills at once.

Diagnosed with autism as a toddler, he had been placed on an intense regimen of supplements and medications aimed at treating the disorder. He was injected with vitamin B12 and received intravenous infusions of a drug used to leach mercury and other metals from the body. He took megadoses of vitamin C, a hormone and a drug that suppresses testosterone.

This complex regimen — documented in court records as part of a bitter custody battle over the Chicago boy between Coman, who opposes the therapies, and his wife — may sound unusual, but it isn’t.

Thousands of U.S. children undergo these therapies and more at the urging of physicians who say they can successfully treat, or "recover," children with autism, a disorder most doctors and scientists say they cannot yet explain or cure.

After reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on flawed, preliminary or misconstrued scientific research.

Lab tests used to justify therapies are often misleading and misinterpreted. And though some parents fervently believe their children have benefited, the investigation found a trail of disappointing results from the few clinical trials conducted to evaluate the treatments objectively.

Studies show that up to three-quarters of families with children with autism try alternative treatments. Doctors, many linked to the influential group Defeat Autism Now, promote the therapies online, in books and at conferences.

The investigation found children undergoing day-long infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful…

One in 100 U.S. children is diagnosed with autism spectrum disorder by age 8, according to the U.S. Centers for Disease Control and Prevention. Though behavioral therapies can help, there are no cures for the disorder, which is characterized by communication problems, difficulties interacting socially and rigid, repetitive behavior…

"There [are] no published studies which would suggest that [they] would change the course of autism," testified Dr. Eric Fombonne, head of the division of child psychiatry at McGill University in Montreal and a prominent autism expert.

James Coman says he is so concerned about the possible long-term effects of his son’s treatments, including chelation, that he has filed complaints with state medical boards against the boy’s two Defeat Autism Now doctors, Dr. Anjum Usman of Naperville, Ill., and Dr. Daniel Rossignol of Melbourne, Fla.

"I worry very much," Coman said as his son played nearby with his younger brother and a neighbor’s children. Coman said he thinks his son, now a playful, funny and outgoing 7-year-old, would have progressed developmentally without any medical treatments…

More here.>>

Photo:  Jim Coman, right, hugs his 7-year-old son (not to be identified by name), who has been diagnosed with autism, at their Chicago, Illinois home, July 18, 2009. Coman claims his wife spent tens of thousands of dollars without his knowledge in alternative therapies to cure their son of autism. (Chris Sweda/Chicago Tribune/MCT) Photo via Newscom.