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Parents Look to Unproven Therapies to Solve Autism


Parents of autistic children are forever seeking treatments that might provide improvement for a condition with no known cure. Though they may turn to therapies that carry the stamp of mainstream medicine, they also turn to therapies that are alternative and unproven.

It's understandable, says Dr. Ricki Robinson, a La Canada Flintridge pediatrician who specializes in autism. Not all kids respond well to behavioral interventions, and parents are loath to put all their eggs in one basket.

"If you were the parent of a child with autism, you would be doing it too," she says.

Robinson makes sure parents know the facts by giving them a book listing mainstream and alternative treatments and by discussing possible risks and benefits.

Some specialists, though, worry that parents may inadvertently do their children harm. They are concerned, for instance, about chelation therapy, in which children are treated with chemicals that help remove certain metals from the body. The theory is that autism might be triggered from exposure to mercury, once used in the preparation of certain vaccines. Experts are also concerned about treatment of autistic children with antibiotics, which might add to the problem of antibiotic-resistant bacteria developing from overuse of the antibiotics.

Betty-Jo Freeman, professor of medical psychology at UCLA, says she's perplexed about the use of a hormone, secretin, in the treatment of autistic children. There's no good evidence that it helps, she says. "You wouldn't give your child a psychotropic drug without some evidence, I hope," she says. "Why would you give your child pig hormone?"

Secretin is one of the best-known alternative treatments for autism. Not only pigs but also people make the hormone, which has a natural job in our guts. It has been approved by the Food and Drug Administration to test whether people have properly functioning pancreases, but is also being given to autistic children. The theory is that the intestinal disturbances many autistic children appear to have may cause brain function to go awry--and that secretin helps set things right again.

Some parents report miraculous improvements from secretin treatment, but scientific studies are not encouraging, says Dr. Adrian Sandler, medical director of the Olson Huff Center for Child Development in Asheville, N.C.

For instance, a study by Sandler and others published in the New England Journal of Medicine in December 1999 found no difference in children given a single dose of synthetic human secretin or a placebo. Since then, Sandler says, there have been other controlled studies with one or several doses of the hormone.

"All of the studies," he says, "are consistent with showing no treatment effect."

Sandler believes that anecdotal reports of improvement after secretin treatment could come from a parent's expectation of improvement and the fact that parents focus more on their child after treatment. That in itself, he says, can lead to improvements in such things as eye contact.

But Bernard Rimland, father of an autistic son and director of the Autism Research Institute in San Diego, which supports a number of alternative autism treatments, says that secretin therapy is very promising. He says doctors can be blind to improvements they don't want to see.

"These guys have a vested interest in the status quo," he says.

The studies have also been quite small, says Walter Herlihy, president and chief executive of RepliGen Corp. in Needham, Mass., a company that makes secretin. Preliminary results from a larger trial testing several doses of secretin on autistic children who also have gut disturbances should be coming next month, he says.

Until more studies are done on alternative therapies, a parent's best strategy is to take a long, hard look at what's being promised, says Ami Klin, psychologist with the Yale Child Study Center in New Haven, Conn.

"We tell parents, the rule of thumb is that if someone wants to sell you something expensive and it takes a lot of time away from interventions that do work but where nobody promises a cure--be careful."

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