Autism study still on hold

Researchers pushing for federal testing of unproven treatment

Associated Press

July 9, 2008

CHICAGO - Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism - a theory never proved and rejected by mainstream science. Mercury hasn't been in childhood vaccines since 2001, except for certain flu shots

But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children, provided the tests are safe.

"So many moms have said, 'It's saved my kids,'" said the institute's director, Dr. Thomas Insel.

For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel told the Associated Press.

The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood. Any study in children would have to exclude those with high levels of lead or mercury, which would require treatment and preclude using a placebo.

One of the drugs used for chelation, DMSA, can cause side effects, including rashes and low white-blood-cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system.

"I don't really know why we have to do this in helpless children," said Ellen Silbergeld of the Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Despite lawsuits and at least one child's death, several thousand autistic children are already believed to be using chelation, their parents not content to wait for a study.

Autism is a spectrum of disorders that hamper a person's ability to communicate and interact with others. Most doctors think that there is no cure.

Conventional treatments are limited to behavioral therapy and a few medications, such as the schizophrenia drug Risperdal, approved to treat irritability.

Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore.

"With a lot of mothers, if they hear about a treatment, they feel like they need to try it," said project director Dr. Paul Law. "Anything that has a chance of benefiting their child, they're willing to give it a shot."

More than 2 percent of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States.

Chelation drugs can be taken in pill form, by rectal suppository and intravenously.