After her daughter Jodie was diagnosed with autism, Alison Singer went online, searching desperately for anything that looked like it might help her little girl.
She tried gluten-free and casein-free diets and supplements. She sprinkled something called DMG on her daughter’s French toast. She even heard from a doctor who suggested buying a giant electromagnet that could reorganize ions in the brain.
“Parents are very vulnerable when their children are diagnosed. They want to do anything and everything to help their children, and they fall prey to these charlatans peddling the ‘cure du jour,’” said Singer, who lives in Scarsdale, N.Y.
Singer’s experience illustrates the frustration that often drives parents of autistic children to alternative treatments — including a controversial regimen by a Maryland doctor whose license was suspended recently by the Maryland Board of Physicians. That doctor, Mark Geier, injects some patients with Lupron, a drug approved for use in treating prostate cancer in men and endometriosis in women.
Geier sought Wednesday to have his license reinstated, but the board declined after a hearing that was closed to the public. His lawyer, Joseph A. Schwartz III, framed the situation as a “difference of opinion,” with “just as many doctors on our side.” Schwartz also said the parents of Geier’s patients have signed affidavits calling the charges “a bunch of baloney.”
“All we can say now is this stuff works. You can call it a crazy therapy, but it works,” Schwartz said about Lupron.
Many parents are desperate to find something — anything — that works.
Families participating in a database at the Kennedy Krieger Institute in Baltimore — the largest autism database in the world — report using 381 different treatments. On average, families use five treatments simultaneously and spend $500 a month on them. A few use dozens, and the record is 56.
The problem, autism experts say, is that mainstream medicine has been very slow to identify the causes of autism and to identify effective medical or behavioral therapies. Among those now regarded as supported by randomized, controlled scientific studies are the Applied Behavior Analysis and Early Achievements Program used at Kennedy Krieger; certain speech, language and occupational therapies, and melatonin therapy.
“There is sort of an old adage in medicine that says: ‘When there are no good treatments for a disorder, or a disease, there’s a proliferation of treatments,’” said Dr. Paul Law, director of Kennedy Krieger’s Interactive Autism Network and the father of an 18-year-old with autism. The database has more than 38,000 participants from all 50 states.
Law said it’s “impractical and probably wrong to tell families not to do anything that’s not evidence-based. But it is important to encourage families to have a rational approach to the things they try … so you don’t wind up on 20-some interventions.”
Long before Jeff Sell had heard of Geier, his 16-year-old twin sons, Ben and Joe, were diagnosed with autism, high testosterone levels and early, or “precocious,” puberty.
“I come from a school where, if it’s not going to do any harm to my sons, by God I’m going to try it,” he said. His sons were never patients of Dr. Geier’s, and never received Lupron. But like many parents of autistic kids, Sell was left on his own to try to find a treatment that worked.
Sell, now vice president for public policy and general counsel for the Autism Society in Bethesda, said parents’ frustration in trying to find effective therapies is understandable.
“There are moments that you just want to treasure, and then gut-wrenching times when your child doesn’t sleep for three days and is on the bed screaming and holding his stomach in pain and finger-painting with poop. It’s all-consuming. And that leads to: ‘Whatever I can find to help my child cope and get through the day, I’m going to try it.’”
Geier used injections of Lupron, which suppresses testosterone production, at a network of clinics in Maryland and several other states. Geier and his son, David, claim that testosterone is elevated in autistic children and worsens the vaccine-related mercury toxicity they blame for autism.
In suspending Mark Geier’s medical license two weeks ago, the Board of Physicians issued a report alleging that he put children at risk. The board said he improperly diagnosed patients, failed to fully inform parents of the treatment dangers and misrepresented his credentials — all charges he denied.
On Wednesday, after the board hearing, Geier and his attorney said they will appeal the suspension. Schwartz said Geier has become a target because of his outspokenness on the link between mercury in vaccines and autism, which has been widely discredited by mainstream medicine.
Geier, who offers the therapy in the Rockville and Owings Mills offices under the name Genetic Counselors of Maryland, said of the charges, “I’m angry, but I’m also sad. I don’t want my patients to have to go to institutions when this therapy works.”
Liane Kupferberg Carter is a freelance writer in Westchester, N.Y., who works for the New York-based Autism Science Foundation. When her younger son was diagnosed, there was little information available to guide parents — her only reference points for autism were the movie “Rain Man” and a couple of characters in TV shows.
She and her husband consulted a nutritionist and engaged in more mainstream treatments such as speech, occupational and behavioral therapies, auditory and vision training. They heard about other families trying hyperbaric chambers, IV immune globulin infusions and mercury chelation. Some parents took their children to China for stem cell infusions.
At one point, she and her husband saw a doctor who tested their son for a “stealth virus” that he said was almost impossible to detect. He wanted to treat the boy with ganciclovir, an antiviral drug used to fight infections in people with compromised immune systems. They said no after learning he’d used the drug on only one other child.
“There’s a sense of desperation, that for every treatment out there that you consider and don’t do, what if that was the one thing that would make a difference?” she said. “There’s a lot of guilt, a feeling there’s something you haven’t tried.”
Singer, co-founder and president of Autism Science Foundation, which supports research-based therapies relying on rigorous scientific standards, said some parents offer glowing testimonials about alternative treatments, often falsely billed as “cures.”
But once they are subjected to testing, “We see a placebo effect of 20, even 50 percent, which is huge.” The improvements may be the result of normal growth and development, she said.
“Anyone who has an intervention they believe is efficacious should be pounding on the door at the [National Institutes of Health] begging them to do a clinical trial,” Singer said. “They shouldn’t be saying, ‘We don’t want to waste time [with studies].’”.
Teri Chason, 35, of Parkville, considered a gluten- and casein-free diet for her daughter Addie when she was diagnosed with autism-related developmental delays. She even bought the cookbooks.
But in the end, she and her husband decided to stick with science-based therapies provided by the Baltimore County infants and toddler program, and by Kennedy Krieger’s Early Achievement Program.
“My husband and I are very conservative in our thinking,” she said. “If something is backed up by science … or if something comes highly recommended, we tend to do things like that. … We knew [at Kennedy Krieger] we were dealing with the best of the best. We put our faith in that, and we have no regrets.”
Addie is now in a regular second-grade class in Baltimore County.
Law said data from the IAN project is helping researchers identify the most widely used non-evidence-based therapies so they can be subjected to scientific testing. Those proven to be effective can then be promoted, while parents can stop wasting time and money on those shown to be ineffective or dangerous.
But unlike childhood cancer, in which 95 percent of the patients are enrolled in studies, Law said, only 10 percent of children with autism are registered with IAN or are part of research studies.
“That’s really not very good at all,” he said. And it’s not because it’s a rare disorder. Incidence studies have continually increased estimates of autism’s frequency in the population.
“Because of the complexity of the disorder, we need everybody to be engaged in finding the answers,” Law said. “We all need to come together and support the research process, or we’ll never have the answer, or it will take much longer.”
Interactive Autism Network
Participating families: More than 38,000
Total treatments they’re using: 381
Average: 5 per family
Average spending per family: $500 a month
Most commonly used therapies: prescription medicines, speech and language therapy, occupational therapy, applied behavior analysis and other behavior-based therapies, sensory ‘ntegration therapies, casein/dairy-free and gluten-free diets.
For more on the Interactive Autism Network at Kennedy Krieger Institute, visit: kennedykrieger.org