Autism: Kids put at risk
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.
Last year, the National Institutes of Health halted a controversial government-funded study of chelation before a single child with autism was treated. Researchers at Cornell University and UC Santa Cruz had found that rats without lead poisoning showed signs of cognitive damage after being treated with a chelator.
Doctors associated with the autism recovery movement often say they know that more research is needed but that children need help now.
“We can’t wait for 10 or 20 years,” pediatrician Dr. Elizabeth Mumper, medical coordinator for the Autism Research Institute (the nonprofit parent organization of Defeat Autism Now), testified in a special federal court.
Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement: It’s as if their child has jumped off a pier. Science hasn’t proved that throwing a life preserver will save the child, but they have a duty to try, right?
Critics say that’s the wrong way to think about it.
“How do they know the life preserver is made of cork and not lead?” said Richard Mailman, a neuropharmacologist at Penn State University. “However desperate you are, you don’t want to throw your child a lead life preserver.”
“Dangerous experimentation” is how pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics, describes use of these unproven therapies.
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.
But clinicians and others in the recovery movement readily offer treatments and hope.
More than 1,000 parents have contacted the Autism Research Institute to say their children have recovered or nearly recovered from autism, Jane Johnson, executive director of Defeat Autism Now, wrote in an e-mail.
“It is growing by word of mouth,” Johnson said of the movement. Johnson and Teri Arranga, director of Autism One, another group in the recovery movement, said solid science supports their approach; Arranga sent a list of hundreds of studies.
But the science cited by the recovery movement was extensively reviewed by some of the world’s top scientists in a unique venue known as vaccine court, formed by the government to address claims from people who think vaccines caused them harm.
The scientists who testified sharply criticized the research behind alternative treatments, using words like “careless” and “misleading.” They found no proven value in many specific therapies for autism, such as sauna treatments, chelation and ingestion of worm eggs.
“So much of what’s said doesn’t make scientific sense,” testified Dr. Robert Rust, a chaired professor of neurology at University of Virginia.
“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.
His wife declined to be interviewed but has said in court documents that she believes the boy’s many alternative therapies benefited him. She argued that her son’s treatment must continue on a regular basis.
Rossignol declined to be interviewed for this story. Usman’s practice, True Health Medical Center, said it would not comment on a specific case, citing office policy and laws designed to protect patient privacy.
“We base our treatment protocols on the lab results, parent reports and physical examination of our patients -- nothing out of the ordinary in the practice of medicine,” Usman wrote in a separate e-mail. “I am deeply troubled by any suggestion that the medical profession should not treat the medical problems these children clearly face.”
Both family practice doctors are stars of Defeat Autism Now, having trained thousands of clinicians, according to Johnson. They are listed on the group’s online clinician registry, a first stop for many parents of children with autism seeking alternative treatment.
To be listed, doctors need only attend a 13-hour seminar held by the Autism Research Institute, sign a statement saying they agree with the group’s philosophy and pay a $250 annual fee.
Johnson said that doctors linked to her group mostly focus on diet and vitamins. Yet a recent clinician seminar held in Dallas covered many highly technical specialties: immune problems, digestive issues, methylation abnormalities, mitochondrial dysfunction and detoxification.
As long as doctors continue to attend seminars every two years, they can remain listed. As of this month, 350 physicians, naturopaths, chiropractors, nurses and others were listed on the Defeat Autism Now U.S. registry for state-licensed healthcare providers.
Many sell supplements to patients, which most practitioners consider a serious conflict of interest. Of 300 U.S. Defeat Autism Now clinicians who answered a question about supplement sales for the registry, 80% indicated they sold the products to patients. Some even sold proprietary formulas.
“This is one of the most . . . grave violations of our code of conduct, codes and ethics,” Rust, the neurologist, testified in vaccine court.
A disclaimer on the registry site states that the Autism Research Institute does not “guarantee competence, skill, knowledge, or experience” of those listed.
One physician on the registry was Dr. Roy Kerry of Pennsylvania. In 2005, a 5-year-old with autism had a heart attack and died while being intravenously chelated in his office, according to court records.
Less than a year later, Kerry was added to the registry. In 2008 he voluntarily surrendered his medical license pending criminal charges of involuntary manslaughter in connection with the boy’s death, according to the Pennsylvania Board of Medicine.
Those charges were dropped, but in July the state board suspended his license for six months, with 2 1/2 years of probation, state records show.
Kerry’s lawyer, Al Augustine of Chicago, said there was no proof chelation killed the child and that Kerry agreed to the suspension to avoid the cost and emotional hardship of contesting it.
Defeat Autism Now continued to list the doctor until Nov. 5, a day after the Tribune inquired about his inclusion.
Johnson said the group had already planned to drop him because he had not filled out paperwork on his medical license.