‘Don’t Call 911’: In Private, Fake Autism Experts Gave Dangerous Advice

‘Don’t Call 911’: In Private, Fake Autism Experts Gave Dangerous Advice

“He’s struggling with something but can’t express,” the father wrote. “Crying non-stop.”

It was October 11, 2020, and someone who said he was the father of an autistic child had been consulting people he apparently believed to be medical experts for the past five months.

The person said he was looking for help for a two and a half year old toddler who had been diagnosed with autism spectrum disorder (ASD). The man, whom we’ll call JS—the initials of the pseudonym he used online—had joined a private Telegram group run by Kerri Rivera, a self-proclaimed autism expert who has long promoted a dangerous chemical treatment called chlorine dioxide that she falsely claims can “cure” autism as well as cancer. People join the group looking for medical advice for both themselves and their children.

According to records showing months of past activity provided to VICE News by a member, Rivera’s private group looks in many ways like a worst-case scenario. It shows what can happen when dangerously bogus health advice is dispensed to a group of frantic, desperate parents in a self-reinforcing environment, safely hidden from public view. JS’s child was in crisis, according to what he told the group, and he was being buffeted with increasingly confusing, contradictory and dangerous advice.

Over the course of the weekend, the child’s concerning symptoms had mounted into an emergency, JS said. He reported to the group that the boy began experiencing muscle stiffness and had been crying inconsolably. He uploaded photos that he said showed the child’s feet stiffening.

JS was promptly deluged with advice from other group members: give the child magnesium, electrolytes, call Rivera, “don’t panic.” As JS posted photos of the child’s stiff limbs, two people began to urge him to go to urgent care or the emergency room. “Don’t fuck around,” one of them urged.

But another member of the group stepped in, authoritatively. “Don’t call 911 please,” a person using the name “M Rob” wrote.

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JS’s child was experiencing a “die-off reaction,” M Rob wrote. This is a term used by people promoting faux autism cures. They falsely claim that “a die-off,” which can involve extreme physical discomfort, is a normal response to toxins leaving the body. “Need coconut water.”

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“Are you [JS]’s kids’ doctor?” another group member demanded. “Have you seen the kid! Have you performed a clinical assessment?”

There is no evidence that M Rob had seen the child in person or was in a position to offer him informed medical advice. But JS likely would have been predisposed to listen to M Rob, who had, over the past few months, become an increasingly central voice in the group. A look at months of chat records from the group shows two things: Rivera offering her brand of dangerous advice to a devoted audience willing to do whatever she recommended, and a group of parents convincing themselves that they’d acquired enough medical expertise to advise each other, even in apparent emergency situations.

M Rob, the person who urged JS not to call 911, identified himself as a father of a child with autism; he implied that he had a background in science or medicine. He frequently dispensed medical advice and treatment instructions, and group members began to sometimes pose their questions to “Kerri/M Rob.” It’s an indicator of how persuasive those group members can be with one another; the people in the group seemed to forget that they had little information about who M Rob is or what his qualifications might be.

M Rob also seemed to have other agendas. Over time, mixed with his medical advice, he began making increasingly lurid, conspiratorial, and utterly false claims about vaccines, especially a potential coronavirus vaccine, which he called “evil.”

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The structure of the group itself—along with the nature of Rivera’s advice, and M Rob’s increasing authority—all combined to create the recipe for a potentially serious crisis, now that a child appeared to be truly in danger.

It’s important to be clear about what we know, and what we don’t, about the events that seem to have transpired in Rivera’s private Telegram group. Rivera recommends that parents sign up for Telegram using an alias, and the group appears to only be accessible with an invitation from an administrator.

An account with the username “Support” is clearly Rivera herself, often instructing people to email her at her main email address.

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People in the group frequently, albeit unconvincingly, refer to their children as “pets,” seemingly to avoid putting in writing that they’re trying untested medical regimens on them. (The group is littered with references to “cats,” “dogs,” and “hedgehogs”, as well as emojis of the same. Instead of “chlorine dioxide,” group members sometimes use an emoji of a CD.) Group members also occasionally confirm outright that they use the word “pet” to mean a child, since new group members are often confused by the attempts at subterfuge.

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JS, the panicked parent, didn’t provide much information about himself, though he did give a wealth of detail about his child’s symptoms. (VICE News has not been able to identify him or reach out to him for comment.) He appeared to be speaking English as a second language, and seemed to live either in India or the United States; he made references to picking up products at Home Depot, an American company, but asked other parents in the group where to order a chlorine dioxide kit that would deliver to India.

Since all the people in the group are instructed to use aliases, and not to use those aliases to post to other groups, there’s no absolute proof that “JS” is a real person, or that he truly had a child who experienced a medical emergency. As ever, people on the Internet are not always who they say they are, and without supporting evidence, we only have what people in the group told one another. What’s real, though, is strong evidence of Rivera consistently offering dangerous advice.

Chat logs from the group were exported from Telegram and provided to VICE News by a member of the group who was concerned about what was going on there. The person was able to prove to us that they were a member of the group, filming themselves logging into it on their computer screen, then scrolling through the chat as we watched.  Additionally, soon after we reached out to Rivera for comment, she returned to the group and announced “There’s a troll in here,” her term for journalists or activists who join her groups to observe what’s going on in them.

An emergency like the one JS claimed he experienced was, in some ways, all but inevitable. As Business Insider reported in April, Telegram groups have been thriving as a site for bogus cures for autism, specifically chlorine dioxide, a treatment so dangerous that its proponents have been chased off virtually every other platform. (Chlorine dioxide or sodium chlorite are both potent chemicals that, when prepared correctly, can be used as a bleaching agent. The FDA has been warning consumers since 2010 not to ingest, inject or use an enema of these products, which are marketed under a variety of names, most commonly “CD” or “Miracle Mineral Solution.”)  BI also reported that the chlorine dioxide groups were soon touting CD as a purported “cure” for COVID-19, which it is not. Rivera herself openly celebrated when Donald Trump made comments suggesting that household disinfectants could possibly be injected to cure COVID-19.

“Our time has come!” she exulted on Telegram.

Rivera is not a medical doctor; her road to this highly particular spotlight has been winding. A Chicago native and reportedly a former real estate agent, she was based for several years in Puerto Vallarta, Mexico, where she ran a supposed clinic called Autism O2  and began promoting chlorine dioxide as a “cure” for the disorder. The Illinois Attorney General launched an investigation into her claims, which resulted in her agreeing not to sell some of her products in the state, to date the strongest regulatory action that’s been taken against her, short of some stern letters from the Food and Drug Administration. (Activists tracking her activities believe she’s now living in Germany, which she has not confirmed.)

Rivera has since gained worldwide notoriety, as well as a strong seam of devotion among desperate parents who believe she’s their only hope. Groups promoting her purported bleach cures on Facebook used to have thousands of members before undercover activists and public pressure forced the company to shut them down and have her book pulled from Amazon; the book, Healing the Symptoms Known as Autism, is a cornerstone text in the world of experts and parents who falsely claim autism can be cured.

“My book was removed by Amazon and my Facebook support groups were deleted by Facebook, and YouTube has removed my videos,” she wrote in a post on her website.

Throughout it all, though, she’s busily promoted her questionable claims and products through a company called KetoKerri, on her own website, and, increasingly, on Telegram.  KetoKerri itself doesn’t sell chlorine dioxide; Rivera recommends purchasing it through a company that says it is based in Florida. But that doesn’t mean she doesn’t routinely promote it; in a warning letter the FDA sent to Rivera and KetoKerri in September the agency wrote, “While reviewing your websites, we noticed that you recommend drinking a mixture of chlorine dioxide and water for the prevention and treatment of COVID-19, among other diseases. Chlorine dioxide is not safe or effective for preventing or treating COVID-19 when ingested. Moreover, ingesting this dangerous product can cause serious adverse health consequences and even death.”

In a supposed “disclaimer” on her website, Rivera strongly suggests she’s being censored for promoting an effective alternative treatment.  “Censorship is real and pervasive when you are doing something outside of the mainstream,” she writes. “The government authorities and big tech companies say they are engaging in this censorship in order to protect the public from ‘misrepresentation of results’ and ‘unproven’ products or protocols. I don’t have any desire to misrepresent results or claim something is proven when it’s not. I believe in being honest and also working within the legal system.”

JS joined the private group in May 2020, and wrote despairingly several times that his toddler son was having temper tantrums and uncontrollable crying bouts, along with what appeared to be serious stomach pains.

While some parents swear they’re seeing miraculous improvements, after several months of religiously trying to follow Rivera’s recommended treatments, JS had increasingly reported his child wasn’t doing well. After giving the child multiple doses of chlorine dioxide throughout the day, he said, the boy “looks like he is having some pain,” he wrote in June. “Just can’t understand why god created autism. Going to sleep after ending one out our [sic] toughest week,” he added, one night in July.

The father also reported using zeolite, a substance that natural health advocates falsely claim can “detox” the body or remove heavy metals from the bloodstream. (The renowned cancer hospital Sloan Kettering says zeolite has been marketed as a cure for “cancer, diarrhea, autism, herpes and hangover” but that there is “no published human data to support these uses.”)

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In mid-September, JS grew concerned because his son had, he wrote, woken up at night “and was laughing for no reason in the dark.” Rivera instructed JS to “double dose him when he wakes up.”

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(The term “PP” stands for “parasite protocol,” a chlorine dioxide regimen the parents undertake because they believe their children are suffering from parasites, and that their symptoms worsen during the full moon and need to be treated more aggressively.)

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JS worried that “parasites” could be making his child “laugh for no reason.” Rivera responded that the boy likely had candida and that he needed chlorine dioxide, black seed oil and a third supplement which would, she wrote, “kill all pathogens.”

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By late September, JS wrote hopefully that his child sometimes seemed to be making incremental improvements, though he didn’t specify what kind.

“Last new moon we were still alternating between screaming and laughing maniacally,” he wrote. “In between moons we were seeing lots of improvements but a return of symptoms was always just around corner [sic] at next moon. Last night wasn’t perfect, we were up ALL NIGHT. Definitely still obvious moon effects, restless, unable to sleep etc but the improvements we did see during full moon were completely new.”

But by that weekend in October, he’d begun to truly panic. The child had no appetite. “During salt bath my kid is grinding his teeth so hard,” he wrote in a message directed at Rivera. “Am sacred because the sound from teeth grinding is very hard.”

When JS described his child experiencing what looked like a true emergency, that weekend in October, Rivera herself didn’t appear to be online at the time. Instead, M Rob and other group members began trying to coach JS through the crisis on their own, offering conflicting advice.

After telling JS not to call 911, M Rob added that JS’ son had started a new supplement called “Firefighter” recently and might be reacting to the ingredients. “Just get something down,” he instructed.

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As the apparent crisis went on, “I was starting to freak out,” one group member told VICE News; they asked for their name to be kept private to be able to freely discuss what they’d witnessed. This person was the same one who showed us exported chat logs, photos, videos and files from the past several months in the group. They said they decided it would be prudent to save as much information from the group as possible; the day after JS’ apparent crisis, they said, many of his messages appeared to have been deleted.

“Seeing the images—the vomiting, the diarrhea, there’s actually a video from [JS] showing his kid crying,” the person told us. “I didn’t know what to do. If we were able to figure out any information on him, this would’ve been over quickly.” (VICE News has viewed dozens of videos and photos from the group; over the past few months, JS uploaded multiple photos of what look like vomit and fecal matter, as well as photos of his child’s limbs. We’ve also seen a still image from a video he posted, of what appears to be a toddler, lying with his eyes open on his parents’ shoulder with his head against the back of a couch.)

“Firefighter,” the substance M Rob referred to, is one of many supplements marketed by a man named Roby Mitchell, who calls himself Dr. Fitt. Group members make frequent reference to using Dr. Fitt-branded supplements and Rivera recommends some of them as a core part of her “protocol.” That in itself is deeply concerning.  Mitchell was stripped of his medical license in 2005 by the Texas Medical Board for not following a previous probationary order, then ordered again in 2012 to stop holding himself out as a doctor after a bizarre incident where he told a terminal cancer patient she could be “treated” by injecting her blood into the udder of a pregnant cow, then drinking the milk. The patient died before attempting the “treatment,” per the Texas Medical Board, and Mitchell declined to provide a refund to the patient’s family. Mitchell has a long history of making questionable medical claims, particularly around autism: as VICE previously reported, he boasted this spring of using untested ketamine treatments on a six-year-old child to “cure” their autism.

Mitchell now sells a variety of “supplements” and natural health remedies under the Dr. Fitt name. Rivera’s private Telegram group is full of recommendations for some of those products.

“Telegram is a platform where bad people operate,” Fiona O’Leary told VICE News. She’s an activist in Ireland who advocates on behalf of people with autism, and who for the past seven years has called chlorine dioxide treatments abusive and unethical, and called for their promoters to be sanctioned or jailed. O’Leary herself is on the autism spectrum, as are some of her five children, which she says accounts for her fiery urgency. “I want these groups shut down,” she told VICE News. “It’s a personal thing to me now.”

O’Leary has been monitoring Rivera’s Telegram groups for months, and connected VICE News with the group member who gave us the chat logs and other information about the internal workings of the group. O’Leary has been watching in horror as the use of chlorine dioxide has skyrocketed around the world, and says a five-year-old boy in Argentina recently died after being given the substance. (Authorities in the Patagonia region said they were investigating in August whether the boy’s death was related to chlorine dioxide.)

“How can these groups still be allowed to operate?” O’Leary demanded to know.

Telegram did not respond to a request for comment from VICE News. Telegram’s FAQ reads, in response to a question about what to do about “illegal content” on the app, “All Telegram chats and group chats are private amongst their participants. We do not process any requests related to them.” (Chlorine dioxide is not, in itself, illegal; it has antimicrobial properties and poultry farms, for instance, sometimes use it as a sanitizing agent. But that doesn’t make it legal to hold it out as a curative or a medicine that should be taken internally. People who sell chlorine dioxide or falsely market it as a cure for serious diseases like autism and cancer have been criminally charged and convicted in the past. The Food and Drug Administration is particularly cracking down on a Florida institution, the Genesis II Church, which is one of the leading promoters and distributors of chlorine dioxide treatments. Rivera was previously closely aligned with the church’s founder Jim Humble, a former Scientologist who has claimed to be a billion-year-old space god from the Andromeda galaxy and who said he discovered Miracle Mineral Solution in the jungles of South America.)

In her public Telegram groups, Rivera is somewhat restrained about what she’ll recommend to frantic parents, knowing that those groups are viewable to anyone using Telegram, including members of the media and concerned activists, whom Rivera refers to as “trolls.” (In her most active public Telegram group, a “Support” account that is clearly run by either Rivera herself or an assistant, warns users not to respond to anyone who might private message them. “There are trolls,” the account wrote, in a message pinned to the top of the chat. “Answer no one in a private message. They like to destroy families and send in CPS.”)

But in the private group, accessible only to paying customers, JS had been receiving a flurry of bewildering and extremely dangerous advice from Rivera and the other group members, particularly M Rob, who offered particularly copious and authoritative-sounding advice on how to carry out Rivera’s recommended treatments.

The treatments recommended had not been effective, JS wrote that October weekend. “But I want to try more before giving up because this is marathon.”

JS reported to the group that he’d been experimenting with a mixture of many different “cures” promoted there: chlorine dioxide, enemas, mebex (a drug intended to treat intestinal parasites, which many parents falsely believe their autistic children have), and what he called “BSO,” which appears to be “black seed oil,” another treatment promoted by Roby Mitchell. (“Black seed oil has been used since antiquity,” Mitchell writes on his website. ”Black seed oil contains an orchestra of plant chemicals that have a positive effect on the body.”)

Rivera and Mitchell are mutual fans; he’s written warmly about her on Facebook, and she sells and promotes his products through KetoKerri. In a warning letter the FDA sent to Rivera’s company KetoKerri in September, the agency said that Rivera had been promoting Dr. Fitt’s Black Seed Oil and other supplements made by “Dr. Fitt,” including “Firefighter,” the one that is frequently promoted in the private Telegram group. The products, the FDA wrote, were “unapproved drugs” falsely being held out as cures for COVID-19 and other serious illnesses, and advised her to “review” her site to make sure she corrected the “misleading” claims. The Dr. Fitt products are still for sale on her website, but a page highlighted by the FDA on “Coronavirus prevention and treatment” has been taken down.

In the end, JS wrote, he decided to disregard the advice of M Rob and took his son to the emergency room, where, he reported, his was undergoing a battery of tests. “Doctor says his calcium levels are extremely low and they want us to stay in hospital.”

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“Thanks everyone for all the support,” he added. “He is having IV now and sleeping. I didn’t expect this bad.” The boy had been “sick and not showing interest to eat” for the last 10 days. He also further clarified the extensive mix of unproven treatments he’d been giving to the child.

“I first stopped mebex then stopped BSO as it was aggravating this throwing up then stopped all supplements and reduced CD dosage from 16 doses a day to 8 doses,” he added. “From yesterday just gave him 4 doses a day and two enemas as usual. Last 10 days was bumpy ride he eats good some times and doesn’t eat sometimes. He throwed up 4 times last 10 days. Today was worst. He was very good until 1.00 pm and got severe cramping after after enema.”

He also added that the doctors wanted to give the boy Benadryl and Advil, writing, “Is that good ok, he had dose of CD three hours before.”

M Rob again authoritatively stepped in, approving the use of Advil and Benadryl and adding, “Don’t worry it won’t show up in the blood work.” It’s unknown what happened next, or if JS’ son has recovered.

Rivera did not respond to requests for comment from VICE News. The day after we sent our inquiry, however, she returned to the Telegram and announced “There’s a troll in here.”

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On her website, Rivera has an all-purpose response to members of the media, which reads, in part, “I receive a large number of interview requests from early or stalled career reporters who have no background in health care, medicine or working with autistic children who want to talk with me about “toxic bleach.” To call chlorine dioxide “toxic bleach” is fraud, pure and simple.” She also claims that “a private investigator with military intelligence experience and a career at a three letter agency” investigated reporters who, she claims, “have been the most active in spreading misinformation to the public about what chlorine dioxide is.” She claims, without evidence, that “some of these reporters have been actively coordinating with abusive Internet trolls who have been caught harassing families of children with autism.”

While Rivera wasn’t present during the apparent medical emergency, a few hours later, she logged on. “It sounds like you are very off track,” she told JS, instructing him to contact her. Her advice to JS wasn’t to stop giving the child chlorine dioxide; only to cut the dosage in half.

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A few days later, M Rob—not Rivera—claimed that JS’ son was home and recovering and “taking a break from everything.” He also claimed, without evidence, that the child’s apparent medical emergency wasn’t due to Rivera’s suggested treatments, but due to another medical issue and because, as M Rob put it, “vaccines fucked his GI tract up.”

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“Please troubleshoot all problems with Kerri directly,” M Rob instructed. “This group is now compromised unless we start a new group. Only post general unbaised stuff here for now.”

The day after the medical emergency, according to the person in the private Telegram group, messages from JS began to disappear. “It seemed like either they kicked out [JS] or he himself left. I’m not sure,” the person told VICE News. But Rivera and M Rob were dispensing medical advice as usual, as though nothing in the world had happened. Rivera seemed to reference the incident briefly and implicitly, saying the group was not for anyone whose “pets” were not showing good improvement.

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“It seems that unless your pet is getting better and better, this is not the place for you,” she wrote.

Rivera then pivoted topics quickly, to an appearance she made at a fringe expo in Georgia over the weekend. There, she said, she’d met Del Bigtree, a famed figure in the anti-vaccine world.

The group soon moved on; recently, they were discussing flu shots and vaccines. All of those things, the group agreed, were unacceptably dangerous. So too, they decided, were “trolls” who might see what they were doing, to their children and themselves; they soon began taking steps to lock the group down even further, kick out anyone they suspected of being a troll, and make sure no one could ever stop them.


Source : Anna Merlan Link

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