Leo Rosa's nutritionist recommends he take cod liver oil to balance out his diet. (Lesley McClurg/KQED)
A huge majority of parents who have a child with autism have tried some sort of unorthodox treatment to alleviate core symptoms and improve skills like communication or social behavior. A 2015 study found 88 percent of parents (1,084 respondents) had tried some form of complementary or alternative medicine for their child.
The treatments range from special diets and supplements — two of the most frequently tried interventions — to music or animal therapy. But parents have little guidance from medical science, because the evidence for alternatives is thin, if it exists at all.
That said, there is some evidence suggesting children may benefit from simple treatments like vitamin B12, omega-3 fatty acids, and vitamin D, says UCSF psychiatrist Dr. Robert Hendren, who specializes in autism. Hendren's studies of small patient populations have found these supplements produced some positive results in improving social behavior and reducing hyperactivity.
“It’s not quite like they’re cured, that they no longer have any evidence of ever having had autism," says Dr. Hendren. "But certainly people do a lot better.”
Autism can lead to chronic issues like intestinal inflammation and anxiety. Hendren says supplements can improve a child's overall health. When the immune system is stronger, a child has more resources to handle stress; this, in turn, may reduce tantrums or self-injuries.
Alternatives Don't Work for Everyone
I didn’t have to look far to find a family who had experimented with alternative therapies. In fact, a colleague of mine at KQED has a 15-year-old son with autism, named Leo Rosa.
When Leo was diagnosed as a toddler, his mother, Shannon Des Roches Rosa, was heartbroken, but after reading fervently about the disorder she learned a cure might be possible through a nontraditional approach.
Shannon saw a doctor who specializes in integrative medicine, and says he told her that treating Leo’s disorder was a matter of boosting his immune system and cleansing his body.
The doctor tested his blood, allergies, urine, hair and saliva.
"The tests came back and said that he was allergic to everything," Shannon exclaims, "from, like, chocolate to milk to dairy to asparagus — all these really weird things!"
A yeast overgrowth was also identified. So the doctor prescribed numerous supplements and restricted sugar, dairy, gluten and soy in Leo's diet.
Shannon created a color-coded Excel chart to keep track of the pills, shots and creams.
Then the doctor added Bioset to the mix — a combination of acupressure, plus muscle testing for the immune system. In muscle testing, practitioners often ask patients to extend their arm and resist downward pressure. The practitioner uses the level of resistance to check energy blockages, test the function of organs or uncover nutritional deficiencies.
Shannon was not convinced.
"It’s like laying hands on you," says Shannon. "What rational person could ever think that could be useful? It’s like getting your aura read."
Shannon says she wasn't seeing any improvement in Leo's condition, but the doctor told her not to worry because the treatments were preparation for the final step, chelation, a detox therapy intended to remove heavy metals from the body.
But the Rosas were skeptical about the idea, after digging around on the internet and learning about potential dangers from the process. So they decided to draw the line on alternative treatments.
What Does Research Say?
The Food and Drug Administration now warns that chelation products sold over the counter can lead to serious mineral deficiencies by stripping the body of crucial elements, which can "cause serious harm, including dehydration, kidney failure, and death."
As for dietary changes and nutritional supplements, it's difficult to study them. Trials are often too short to track dietary changes adequately; blind studies are often challenging to conduct; and the research doesn’t offer the reward of a patent.
Dr. Hendren has led a handful of studies on popular options, including methyl B12, omega-3 fatty acids, and vitamin D, all of which he may prescribe based on slightly positive data and witnessing patient improvement in his practice. He's also reviewed the science on more than 90 alternative therapies.
"But I would caution people about saying, 'Well, if a little bit is good, then why don't you take a walloping dose and maybe that would be better,'" Dr. Hendren says.
He's continuing to look at alternative treatments, including three current studies on pancreatic digestive enzymes; vasopressin (a neurohormone similar to oxytocin); and sulforaphane (concentrated broccoli extract).
The supplement with the most evidence to support its use is the natural hormone melatonin.
People with autism often struggle with insomnia and melatonin helps patients sleep better, which seems to improve their social interactions, says Dr. Hendren.
“Their eyes seemed clearer, their face or interactions seemed brighter," he says. "They looked at me or at others as though they were just fully realizing that those people were there.”
What About Dietary Changes?
One of the most popular things parents try is eliminating gluten or casein from their child's diet. Gluten is found in wheat, barley and rye; casein is in dairy products.
Dr. Hendren says he doesn’t generally suggest special diets because there is insufficient evidence to demonstrate a clear benefit.
"I would try and encourage people to stay within the range of things that have been studied and are within the range of things that are known and effective," says Hendren.
If parents are interested in going gluten or dairy free, he suggests they work with a nutrition expert.
Restricting Leo Rosa's diet was a costly experiment that turned into a nightmare, says his mother, Shannon.
"He still ate, but he wasn’t happy about it," she says. "He was such a little sad, hollowed-eyed Oliver Twist-looking dude at this time. It was so sad."
Shannon Des Roches Rosa is no longer experimenting with Leo’s diet. In fact, she says she'd like to go back to the moment Leo was diagnosed and give herself advice.
“Your son is a great kid," she says. "He’s going to be okay. Don't think about trying to turn him into someone he isn’t.”
Shannon says the real miracle cure is acceptance and love.
Editor's Note: This post has been updated to reflect that autism is a disorder, not a disease.
Get the best of KQED's science coverage in your inbox weekly.