E
very two weeks, Alex Chinitz swallows the strangest of brews: fruit juice with 20 to 30 larvae of Hymenolepis diminuta mixed in. That fancy Latin word is the name of a helminth — a tapeworm, to be precise — that can grow to 30 centimeters.The larvae Alex drinks are not visible, nor can he taste them. They are encased in tiny cysts, and under a microscope, they look like seeds — only with eyespots and tails. By the time they reach Alex’s mouth, they have already passed through several other organisms: The adult parasites lay eggs in rats’ intestines; the rats excrete the eggs; beetles eat the rats’ feces; and inside the beetles, the eggs hatch into larvae. After Alex swallows them, the larvae swim around in the lumen of his gut and die about 10 to 14 days later.
Alex, 25, is autistic and nonverbal, so he cannot tell us what he thinks of this concoction. But his mother, Judy Chinitz, gives it full credit for having eased some of Alex’s autism traits.
In fact, this drink is only the latest in a series of ‘helminth therapies’ she has tried. “It was affordable, and the side-effect profile is minimal to none,” Chinitz says. She helps run a company in the United Kingdom, Biome Restoration, that distributes the larval cysts to thousands of customers worldwide. Regulations in the U.K. prevent company officials from asking their customers how they are using the product. But, as many online forums attest, scores of people are turning to worms such as these to treat autoimmune conditions, severe allergies, digestive complaints, mood disorders — and autism.
Chinitz came to this unusual treatment after years of seeking relief for her son. When Alex was a child, his chronic inflammatory bowel disease (IBD) was so debilitating that he was dependent on steroids to keep it in check; he took six different medications at one point. He often isolated himself, preferring to sit alone in his sensory swing than to spend time with others.
Improvement in his gut health came when Alex was nearly 10, after his mother changed his diet, cutting out grains and processed sugars. But she was intrigued to see whether helminths might have an even greater effect.
She first read about ‘helminth therapy’ in 1999, when Alex was 5, in a news article. “It still hangs in a frame above my desk,” she says. But it took her years to figure out how to procure the worms. Helminths are not exactly stocked in pharmacies, and their manufacture, distribution and importation is illegal in the United States. Eventually, though, when Alex was 13, she found a Thai supplier, now called Tanawisa. She spent $6,000 on a six-month supply of Trichuris suis ova — eggs of whipworms that typically live in pigs — and took a risk having them shipped to her home in New York.
Alex began ingesting about 2,500 invisible eggs in a small drink every two weeks. About 14 weeks later, Chinitz says, she noticed that her son no longer wanted to be by himself. It was like a “happy pill,” she says. “He was responding so beautifully to it, I went into a panic because I couldn’t afford to keep it up.” And so began their journey with helminths.
Despite her conviction, there’s no proof that these treatments work. A colonoscopy has shown that Alex’s IBD is in remission, Chinitz says, but there’s no evidence of any change to his brain; as for his behavior, he may have felt more social after ingesting the whipworm eggs simply because his stomach hurt less. Anecdotally at least, his story resonates with many others who report relief from some autism traits after helminth therapy. In a 2017 survey of physicians monitoring 700 helminth users, more than half of the users have autism and the majority have had a favorable response, says William Parker, a researcher at Duke University in Durham, North Carolina, who led the survey. “The helminths are definitely helping some of the kids.”
Proponents of the approach offer this as a biological rationale: Treatments that shake up the balance of organisms in the gut are known to affect the brain. Almost 20 years ago, for example, researchers noticed that antibiotics could bring about short-lived improvements in autistic children who had lost their language abilities and social skills. I take parasitic worms for my ulcerative colitis, a form of IBD. A regular influx of hookworms seems to keep my disease in remission, but I previously tried Trichuris suis to no effect.
The idea of helminth therapy leans heavily on the ‘old friends’ hypothesis: Through most of our evolutionary history, we humans have shared our bodies with a host of bacteria, viruses and parasites; exposure to these organisms primed our immune system and kept it humming, like a finely tuned instrument. Now, however — thanks to modern hygiene, the widespread use of antibiotics and, to some extent, pollutants — we live without that same microbial mix. And as a result, or so the theory goes, our immune system can go haywire, leading to autoimmune disorders, allergies and some brain conditions. Autism isn’t typically thought of as an immune condition, but there is evidence that immune dysregulation and inflammation play a role in some cases.
Research on the microbiome — the collection of microbes that live in and on the body — is still in its infancy, says Mauro Costa-Mattioli, professor of neuroscience at Baylor College of Medicine in Houston, Texas. Just the idea that microbes could influence the brain was “unthinkable a few years ago,” he says. The pace of research has accelerated over the past few years, but microbe-based medicines are not yet in sight.
Still, many parents and clinicians are not waiting. A growing number are experimenting with specialized diets, probiotics, stool transplants and parasites, trying to game the gut to address core autism traits. About 19 percent of physicians surveyed in 2009 said they recommend probiotics to the autistic people they treat. An unpublished survey of 100 people found 2 adults trying stool transplants at home for autism.
These unregulated therapies can be costly and unpredictable — and they pose significant, even life-threatening, risks. Home-grown stool transplants and parasites, for example, can introduce deadly infections. This month, the U.S. Food and Drug Administration issued a safety alert about fecal transplants after two recipients contracted an antibiotic-resistant infection and one of them died.
Given the public’s interest in these therapies, researchers should “speed up the process, as far as investigating and understanding why,” says Chiazotam Ekekezie, who led the survey of 100 people when she was chief medical resident at Rhode Island Hospital at Brown University. “Rather than [have] people taking it into their own hands, maybe we can standardize it and make access equitable and safe.”