Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.
The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.
“Lupron is the miracle drug,” said Dr. Mark Geier of Maryland. He and his son developed the “Lupron protocol” for autism and are marketing it across the country, opening eight clinics in six states. But experts say the idea that Lupron can work miracles for children with autism is not grounded in scientific evidence.
Four of the world’s top pediatric endocrinologists say the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.
Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.
“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.
Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children’s hearts and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.
Geier, who is not board certified in any specialty relevant to autism and the use of Lupron -- including pediatrics, endocrinology, psychiatry and neurology -- does not dispute that his protocol amounts to chemical castration.
So far, he and his son David, who has a bachelor’s degree in biology, say they have treated about 300 autistic children and a handful of adults with Lupron; an additional 200 people are being tested.
Several parents whose children are on Lupron assert that it works, saying their children are better-behaved and show cognitive improvement.
“It was an obvious, undeniable result,” said Julie Duffield of Carpentersville, Ill., whose 11-year-old son has autism. “I wish you could see what he was like before.”
Experts said such beliefs are common among parents who try alternative autism treatments. It’s easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.
“It has become a cottage industry of false hope, and false hope is no gift to parents,” said Autism Science Foundation President Alison Singer, whose daughter has autism. “A lot of these therapies have no science behind them. You are using your child as a guinea pig.”
Mainstream science has yet to explain autism, a developmental disorder that impairs the ability to communicate and interact.
In the absence of definitive answers, there has been a proliferation of unproven treatments, including diets that eliminate wheat and dairy, chelation drugs that leach metals out of the body and treatment in hyperbaric oxygen chambers similar to those used for scuba divers with “the bends.”
A vocal minority of people believe vaccines are to blame for autism, though numerous studies have failed to support any of those theories. One of the most persistent puts the blame on thimerosal, a mercury-based preservative once found in some childhood vaccines but now included only in some flu shots or in trace amounts.
The Lupron protocol adds a new twist to the thimerosal theory. According to the Geiers, who filed for at least one patent on their therapy, many autistic children have not only toxic mercury in their system, but also high testosterone that causes early puberty.
The U.S. Food and Drug Administration has approved Lupron to treat “precocious” puberty, an extremely rare disorder that involves finding signs of puberty in very young girls and boys. Lupron is also used to treat prostate cancer in men, to treat endometriosis in women and to chemically castrate sex offenders.
To treat an autistic child, the Geiers order $12,000 worth of lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone- related level falls outside the lab’s reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.
By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting children on Lupron as young as possible. The cost of the Lupron therapy is $5,000 to $6,000 a month.
Specialists in autism, hormones and pharmacology who are familiar with the Geiers’ protocol said it cannot work as they suggest.
The Geiers say mainstream medicine condemns them because of their vocal stance that pediatricians, health officials and drug companies are covering up the link between vaccines and autism.
Tribune reporters Steve Mills, Patricia Callahan and Tim Jones contributed to this report.