Roxanne Reedy never thought her son would look at her again. Since autism began taking Sean Reedy away from her at age 1, halting speech and many normal behaviors, Roxanne said she never expected an end to his pacing and screaming, his smearing of feces in their Scottsdale home or his episodes in the corner, dragging his head against the wall.
Then Sean, now 7, began treatment 3 1 /2 years ago to remove heavy metals from his body, a process called chelation therapy. Within days, Roxanne said his tantrums stopped, he played with toys instead of hiding in a corner and once again, he was looking at his mother.
"We are just so thrilled and so hopeful," Roxanne said. "How can a kid go from screaming in a corner to wanting to play tag, using words and looking at us again? It was amazing."
Such stories of dramatic turnarounds in autistic children have fueled the use of chelation, a controversial therapy that has sharply divided the traditional and alternative medical communities, as well as different families coping with the devastating impact autism has on their children.
"When you have someone in the medical community tell you to love (your autistic child) and prepare to institutionalize him, you have to look somewhere else or give up hope," said Cynthia Macluskie, who had her autistic son begin alternative therapies including chelation after he showed no improvement from traditional behavioral therapies. "No matter what’s going on, you have to find answers, and if the traditional medical community can’t give them to you, you have to look somewhere else."
But it is unclear if the answers to treating autism lie in chelation therapy.
Some researchers and medical doctors said there have not been enough studies of chelation to determine if the therapy works in autistic patients, or if it is safe.
The therapy strips toxic and essential metals from the body, requiring close monitoring and supplements to restore needed metals like zinc and copper.
"It is still an unproven treatment. . . . We have to be careful," said Dr. Raun Melmed, a Scottsdale developmental pediatrician and medical director of the Southwest Autism Research and Resource Center.
"The risks are really unknown because (chelation) has never been studied in a systematic fashion," he said.
With Arizona State University’s support, James Adams, an engineering professor, is trying to answer the unknowns about chelation with a study he plans to begin in the next few weeks, which will test whether the off-label use of the chelating agent DMSA, a chemical compound approved by the U.S. Food and Drug Administration for lead poisoning treatment, benefits autistic children.
"This will be the first treatment study ever done with this medication," Adams said. "Once completed, it will be ground-breaking."
Adams said that if his study finds that chelation using DMSA reduces or perhaps erases the debilitating affects of autism in children, the results — if accepted and replicated in the scientific community — could prove that mercury plays a significant role in autism.
Autism’s cause remains unknown and there is no cure. An estimated one in every 166 children is affected by autism, cases of which are being diagnosed 10 percent to 17 percent more each year, according to the U.S. Department of Education and other federal agencies.
The disorder is marked by a wide range of symptoms that can include lifelong difficulties with communication, social interaction, sensory sensitivities and repetitive behaviors.
Researchers suspect that autism is influenced by both genetic and environmental factors. Some children, they believe, are genetically predisposed to autism, which could be triggered by something they are exposed to in their environment.
In the autistic community, some people believe that trigger is mercury from dental fillings, certain types of seafood and especially childhood vaccinations — which until several years ago contained mercury from the preservative thimerosal.
They point to symptoms of mercury toxicity that resemble those of autism, including sensory, neurological, immune, motor and behavioral dysfunctions. They also point to the timing of autism’s onset, usually within the first few years of life, when vaccinations are given.
Heather Butcher of Mesa said she can see in her son’s baby pictures the sudden change that occurred when autism began to appear at about 15 months old.
Before that time, the camera captured Joshua brighteyed, laughing and interested in other people. Then suddenly, all the photos show a boy distant from other people, with eyes glazed over.
"I do suspect (vaccines) are what contributed to Joshua’s autism," she said. "If it didn’t cause it, it was a trigger or a catalyst."
But the results of epidemiological studies on mercury, vaccinations and autism are mixed, and medical providers said there is no strong scientific evidence linking vaccines, whether they contain mercury or not, to autism.
Support for therapies to remove mercury from autistic children comes primarily from anecdotal evidence, which does not prove chelation’s efficacy or safety, Melmed said.
Butcher said that despite her beliefs about vaccinations and autism, she is reluctant to put her son through chelation therapy until there is more research proving it is worthwhile.
"We had considered it, but I am worried about safety, honestly," she said. "When I read about it, I wasn’t sure the benefits outweighed the risks. Up to this point, it’s all been anecdotal."
Several years ago, medical providers learned a lesson from secretin, an injected hormone that parents said was improving the lives of their autistic children. When the medication was tested, however, researchers could not find enough scientific proof of its effectiveness to recommend secretin as a treatment, Melmed said.
More research is needed into chelation therapy, said Melmed, whose practice includes a significant number of autistic children.
Although he does not recommend chelation to his patients, many of them are undergoing the therapy, and don’t seem to have the wonderful results that other parents talk about, he said.
"It’s one example of the many possible treatments for autism, and certainly we need to keep looking because it’s a devastating disease. Parents are desperate," Melmed said. "Many children are receiving (chelation) and we owe it to them to determine its safety, its efficacy and whether it should be used," he said.
Adams said his inspiration for research into mercury and autism is his autistic daughter, Kim. By age 5, she was nonverbal. Now 12 years old and in the sixth grade, Kim has made considerable progress, although she functions at a third-grade level.
Kim received chelation, but its impact on her autism was limited, Adams said, because she didn’t start until she was age 9, when the treatment was becoming better known.
"It’s my daughter’s condition that drives me in what I do," he said.
Because better results have been reported when children start chelation at a younger age, Adams said his threemonth study will involve children ages 3 to 9.
ASU’s institutional review board for human subjects has approved the double-blind trial, he said. Next week, Adams will begin recruiting 80 autistic children, half of whom will receive DMSA, the other half a placebo.
To address safety concerns that chelation strips the body of not only toxic metals, but essential metals, participants will be required to take a vitamin supplement, Adams said.
Participants also will be monitored for decreases in liver function and blood cells, a risk reported in 1 percent to 2 percent of patients who stayed on DMSA for 19 days straight, he said.
Once taken off the compound, the patients’ liver and blood cell readings returned to normal. This study, however, will keep children on DMSA for three-day intervals separated by 11 days off the medication, Adams said.
Children will be evaluated before and after their treatment by parents, teachers and in a one-hour assessment between the child and a clinician who will use the Autism Diagnostic Observation Schedule, the medical community’s gold standard in assessing the severity of autism, Adams said.
A comparison of the evaluations, combined with urine tests of excreted mercury, should tell researchers what impact DMSA may be having on the children’s autism, he said.
Adams, a professor of chemical and materials engineering, has been criticized for lacking a medical and clinical background for autism studies — a criticism he freely accepts, but is working to overcome with the help of medical research professionals.
"I would love it if people more qualified than me would do these studies," he said. "I’m just an engineer who sees a huge question out there."