Everything I Learned While Getting Kicked out of America's Biggest Anti-Vaccine Conference
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Illustration: Jim Cooke, photo: Shutterstock
It seemed virtually inevitable that I would be thrown out of AutismOne, a yearly conference that has been accused of being a hive of anti-vaccine sentiments, bad science, scaremongering and worthless products. The conference has, after all, ejected several science bloggers who have previously attended, as well as a Chicago Tribune journalist, a filmmaker, and a representative from the California Department of Public Health. Also, I did not have a press pass.
I will spare you the suspense: I was thrown out of AutismOne. Specifically, I was politely taken out of a lecture by an ex-police officer working security, stripped of my attendee badge, and accused, wrongly and at some length, of working with a journalist for NBC. They also gave me my money back.
“We don’t want you to do a hacked-up job,” explained the ex-police officer, guiding me hastily towards the exit.
In truth, and this has been the case for a long time, AutismOne doesn’t want journalists to do any job at all. It isn’t like most scientific conferences—designed to publicize new information—but a place for people in an often secretive world to catch up with one another. There’s a generalized distrust of the media from most of the speakers and many of the attendees, a conviction that the press can never be trusted to accurately report on vaccines and their purported connection to autism and other disorders.
There’s a reason for that: the connection between vaccines and autism is one that doesn’t actually exist. Despite its claim to be a scientific conference, for decades, it’s been a place where baseless medical treatments are promoted and discredited “experts” are given a warm welcome.
Maybe that’s why I felt a healthy dose of déjà vu. In my brief time at the conference—and while watching hours of livestream videos after I was asked to leave—I encountered many of the same fringe characters and claims I’ve seen at other conspiratorially-inclined conferences around the country.
These include Andrew Wakefield, the one-time gastroenterologist who was the lead author on a now-retracted study suggesting a link between the MMR vaccine and autism. Wakefield’s license to practice has been revoked and his name is mud in mainstream medicine, but he’s a yearly speaker at AutismOne. Mark Geier was there too, another former doctor whose license to practice was suspended or revoked in every state where he’d been certified after he and his son David—who is not a doctor— began treating children with autism with Lupron, a drug used for chemical castration in sex offenders. Kerri Rivera, a woman who infamously promoted the claim that autism-causing parasites can be defeated using an industrial bleach product called “Miracle Mineral Solution,” or MMS, stayed away this year; since 2015, following an investigation by the state attorney general, she has agreed not to promote MMS in Illinois. One person, the osteopathic physician and anti-vaccine celebrity speaker Sherri Tenpenny, delivered a speech I’d heard almost word for word years before, while floating through Mexico on a cruise for conspiracy theorists.
Yet for all its repetition, AutismOne is a useful place to visit. I got a glimpse at the priorities of vaccine skeptics in America, and the ways they’re discussing (and downplaying) a global surge in measles.
A lot has changed, though, since the last time I’ve heard Tenpenny speak. Her message feels less fringe now that there’s clear evidence that the anti-vaccine movement is remaking the world. Well-organized anti-vax groups are a part of what’s led to a global uptick in the resurgence of measles, something UNICEF has identified as a dire threat to children. (It’s not just anti-vax groups, of course; in their report, UNICEF said the problem globally lies with “poor health infrastructure, civil strife, low community awareness, complacency” as well as what they call “vaccine hesitancy.”)
Over the last decade or so, even as it was thoroughly discredited in the worlds of mainstream medicine and science, the movement has started to behave in a more global and organized way: building a campaign to win hearts and minds, and shift legislation. One of the newer currents I saw at the conference, pushing its way insistently to shore, is something I’d call An All-Encompassing Theory of Perpetual Sickness. There’s a push to try to convince an ever-growing number of people that they—not just their children—are sick too. And where there is sickness and disorder, there is, of course, a boundless potential for profit.
That should disturb us, because AutismOne—and the anti-vaccine world as a whole—works remarkably well as an engine for radicalization. Parents are brought in with a genuine concern for their children’s health, and a desperation to find answers, and are met with a variety of new and increasingly wild claims about the medical establishment, the government, and, ultimately, the secret rulers of the world.
Now that the “ex-vaccine movement,” as they prefer to call themselves, is growing into something much larger, there sometimes seems to be no limit to their distrust, and no event—no outbreak, no scientific study—that can pull them back.
Dedicated, professional anti-vaccine activists are a static group, a cast of characters well known to both one another and their enemies, circulating wearily around the same conference circuit in the same hotel ballrooms for decades. AutismOne was held this year at the end of May, as it usually is, at the Loews Chicago O’Hare Hotel in Rosemont, Illinois, a resolutely bland chain hotel a few miles from the airport.
In many ways, it was business as usual. The first conference on the supposed risks of vaccines was held in 1997 by an organization with the anodyne name of the National Vaccine Information Center. Some of the presenters who appeared there are still pushing some version of their dubious ideas, and many of them do so through AutismOne, an organization which was founded in 1998 by a man named Ed Arranga. (Arranga didn’t respond to an email from Jezebel requesting comment.) Ed, who has a son with autism, soon married a woman named Teri, an AutismOne volunteer who also has a son with autism.
Over the next 16 years, the couple’s passion project would become a nexus and a meeting point. For several years, AutismOne partnered with Jenny McCarthy and Generation Rescue, and McCarthy was often a keynote speaker. (The two organizations seem to have suffered some kind of apparent falling out; McCarthy stopped attending and Generation Rescue has not been mentioned at AutismOne in several years.) The other aspects of AutismOne—a radio show, an attempted blog network—have been more or less eclipsed by the conference, which was first held in 2003 at Loyola University, and which has quickly become the most important aspect of the organization.
I waited in line to check in behind a petite woman wearing a blue shirt. “THERE’S NO SUCH THING AS A SAFE VACCINE,” the back read. An enormous needle glinted underneath.
This year, as AutismOne got underway, the hotel thrummed with excitement and tension, as more and more people poured through the double doors into the building. Enormous signs posted in the lobby and along every corridor leading to the conference rooms warned against audio recording, video recording, or interviewing. I waited in line to check in behind a petite woman wearing a blue shirt. THERE’S NO SUCH THING AS A SAFE VACCINE, the back read. An enormous needle glinted underneath.
Though I’ve spent years covering the anti-vaccine movement, I’ve never attended AutismOne, and I was eager to go. But I also knew that their rules for the media were exceedingly strict. In order to receive a press pass, AutismOne requires reporters to jump through a few hoops that seem designed to make sure they are ideologically aligned with the conference organizers. Journalists wishing to attend must “provide a letter of request from the media outlet,” per their website, along with “six previous professionally published work samples relevant to the topic to be covered, how the information is to be documented (e.g., taking notes, interviews, video recording, audio recording, photography) and specific details on how and where the material will be utilized.”
I didn’t think that my “professionally published work samples” would be the kind that AutismOne would like, but I also didn’t intend to invade the privacy of parents attending the conference. So I followed AutismOne’s rules for those without a press pass: I didn’t do any audio or video recording. All of the interviews I ended up conducting were outside the conference itself, with people who’d been told my name, knew that I was a journalist, and knew that my own personal belief is that vaccines are overwhelmingly safe and effective. (One woman pulled up my Twitter profile in front of me and scrolled through it, occasionally doing some light chastisting, before deciding to continue talking to me.)
I also knew that my time at AutismOne was likely to be brief. Ken Reibel, a blogger who critically covered the anti-vaccine world for years, was previously ejected from the conference back in 2008 and again in 2011, when he attended with a science blogger named Jamie Bernstein, who was also kicked out. A former Chicago Tribune reporter named Trine Tsouderos confirmed to me that she was asked to leave in 2009, while in the midst of reporting on a series about discredited and often dangerous autism treatments. A filmmaker named Lars Ullberg, then at work on a documentary about vaccines, told me he was asked to leave in 2010, even after explicitly getting permission to attend.
Reibel, the former blogger, told me that he was driven to write about the conferences due to his son Christopher, 23, who has autism.“It infuriates me,” he told me via email. “The whole autism cure movement can only exist by demonizing people like Christopher.”
With all that in mind, I collected my attendee badge, handed to me without objection by a teenage-looking volunteer, and a big blue canvas swag bag. It contained a litter of promotional items from companies that use AutismOne to market supplements and treatments: Hand sanitizer, a notebook, a puzzle, a litter of fliers. One of them, for a clinic with a locations in Chicago, New York and Los Angeles, advertised hyperbaric oxygen chamber therapy for children with autism, a treatment that isn’t FDA-approved and that the agency says can have profoundly serious side effects, including a risk of paralysis. In the elevator, I ran into a young chiropractor, who told me that she receives continuing education credits for attending the conference, and that chiropractic adjustment could cure seizures.
“Come find me if you have questions!” she told me cheerily as she exited the elevator. I had a few.
I dumped my suitcase in my hotel room and hurried into the conference, where I found myself in a vast blue-tinted hotel ballroom, with gigantic light fixtures that resembled mountainous wadded-up Kleenex and a terrifyingly busy carpet with pointillist patterns which made me constantly hallucinate that ants were crawling just out of my view. Robert Krakow, a personal injury lawyer who focuses on vaccine injury, was just beginning his lecture. In April, Krakow unsuccessfully sued the city to try to stop a mandatory vaccination order in Williamsburg.
Krakow was careful to note that he wasn’t speaking at AutismOne at all, but at a co-occuring event called the HPV Vaccine Education Symposium (which is held, I would note, in the same hotel, and the exact same conference rooms, at the same time as AutismOne. Tax records also show Krakow is an unpaid member of AutismOne’s board).
It wasn’t clear to me why they were so intent on cordoning off the HPV symposium, but the point of it was clear enough: Every lecture and film suggested that Gardasil, the HPV vaccine shot, comes with serious side effects, including death, and that it wasn’t well-studied before it was rushed to market by greedy pharmaceutical companies and a complicit CDC. (The FDA and CDC say that seven deaths following a Gardasil inoculation were reported to VAERS, the Vaccine Adverse Event Reporting System, between 2014 and 2017, when 29 million doses of the vaccine had been administered. The CDC also says there was “no pattern of death occurring with respect to time after vaccination, and there was no consistent vaccine dose number or combination of vaccines given among the reports.” The evidence, the agency says, “did not suggest a causal link between Gardasil and the reported deaths.”)
“Measles, I’m not minimizing it,” he said. “But it didn’t seem like an emergency to us.”
That is, of course, not Krakow’s view. “We’re combating a very well-financed, very sophisticated, very motivated adversary,” he told the crowd. He was convinced that no one would be able to receive justice through the Vaccine Injury Compensation Program, a no-fault federal system designed to compensate families whose children were injured by a vaccine. (It was put in place so that lawsuits wouldn’t make drug manufacturers too paranoid to continue making vaccines, while families whose children had genuine adverse reactions to vaccines could get a measure of justice.)
While he was alarmed by the HPV vaccine, Krakow also found time to discuss his role in the New York measles outbreak, which he found far less serious. “Measles, I’m not minimizing it,” he said. “But it didn’t seem like an emergency to us.”
That was the general party line repeated throughout the HPV lectures, and the conference at large: that vaccines posed more risk than any disease. Luckily, AutismOne is full of purported treatments.
the idea that anyone who’s pro-vaccine is a paid shill of the pharmaceutical industry is common. But RFK, JR. argued that vaccines are the first step in the pharmaceutical industry’s lifelong grip on the lives and health of children.
There were two clusters of lecture halls at either end of the first floor, and both of them opened out in pop-up marketplaces, with booths touting probiotics, genome sequencing, supplements, stem-cell therapies, various kinds of CBD, row after row of lightly tanned men in open-collared suits with no ties and women in business casual hawking their wares. I sipped some unpasteurized apple juice—it tasted like apple juice—and decided to take a pass on the tiny shot glasses of goopy colostrum—the pre-milk substance that’s produced out of the mammary glands of mammals—that were being passed around by the same vendor.
In the elevator, a beaming man handed me a flyer for an “infrared sauna,” a sort of metallic boxy contraption that, when occupied, made everyone look like a baked potato with a human head. “It’s like your grandma’s hugging you,” the man told me. “Or like you’re bathed in divine love. Go in for just 30 seconds. Miracles happen.”
That did sound nice, but there was no time; Robert F. Kennedy Jr., this year’s keynote speaker, was about to begin.
Kennedy, too, was scheduled to speak about the supposed dangers of the HPV vaccine. When he entered the blue-tinted ballroom he was greeted with thunderous applause and a standing ovation.
Kennedy’s lecture wasn’t entirely about HPV, as it turned out. He began by touting his credentials as a well-respected environmental activist, which was his career for many years before he began making controversial, widely disputed claims about vaccines and autism, and his family started writing op-eds denouncing him.
“I spent three-and-a-half decades fighting for those rivers and plants against those corporations,” he told the crowd. “They don’t have souls. They’re moneymaking machines.”
None of this was a new argument, exactly; the idea that anyone who’s pro-vaccine, or who reports on vaccines, is a paid shill of the pharmaceutical industry is a common one. But Kennedy went a step further too, arguing that vaccines are merely the first step in the pharmaceutical industry’s lifelong grip on the lives and health of children.
“The industry makes $550 million a year selling EpiPens, Adderall, albuterol, diabetes medication, anti-seizure—80 percent of the profits come from chronic diseases,” he said. “And you’ll find all those diseases listed where?”
“Vaccine inserts!” the crowd roared back in unison. (The anti-vaccine movement frequently misinterprets the package inserts on vaccines and other drugs as an admission that those drugs inevitably cause adverse reactions and serious diseases.)
Kennedy nodded back at them. “There’s a good argument,” he added, “that every kid is injured.”
This accusation seems to be gaining steam in the last few years: the idea that vaccines are merely the first step in setting up children for a lifetime of problems and chronic illness, and that everyone is, in some sense, vaccine-injured. (That argument’s been popping up for a while: In 2016, for instance, Dan Olmsted, the late editor of the influential anti-vaccine website Age of Autism, gave a talk claiming that 50 percent of children in America “have some kind of problem that can reasonably can be attributed to vaccination.”)
Kennedy went on for nearly an hour, a mountain of claims that grew more apocalyptic by the moment, but that ended, skillfully, with a direct appeal to the parents in the audience.
Over the next few minutes Kennedy made some claims I would hear repeated throughout the conference: that vaccines were linked to a generational drop in IQ and a rise in chronic disorders. “CNN reported two days ago that the suicide rate in girls skyrocketed in 2007,” Kennedy claimed. (Actually, the story reported that the suicide rates among both girls and boys began to climb again that year after declining since 1993.) “What else happened in 2007? The Gardasil vaccine.”
Kennedy went on like that for nearly an hour, a mountain of claims that grew more apocalyptic by the moment, but that ended, skillfully, with a direct appeal to the parents in the audience.
“Your kids,” he told them, “Some of them have been so badly damaged I don’t know how you get out of bed in the morning.” Across the room, people murmured in agreement.
“You are the army,” he told them, “and we’ve got to take back our country.”
He stepped down from the stage a moment later and swept out of the room as another standing ovation began.
Robert F. Kennedy Jr. spoke on Thursday, the second day of the conference. I was scheduled to leave AutismOne on Friday afternoon and watch the rest of the conference remotely. It seemed like an interesting time, then, to test whether the conference was still treating journalists the same way it had a decade ago. I tweeted a few things I thought were newsworthy about Kennedy’s speech, and I waited.
About an hour later, I was sitting in a lecture by Stephanie Seneff, a former research scientist at the MIT Computer Science and Artificial Intelligence Laboratory, who, in 2011, started publishing papers claiming that the herbicide glyphosate was causing autism, and that 50% of children would have autism by 2025.
Seneff has attempted to link glyphosate to a host of other ills; one paper she co-authored in 2013 claimed that Roundup, the commercial name for Monsanto’s glyphosate product, could “remarkably explain a great number of the diseases and conditions that are prevalent in the modern industrialized world.” Discover Magazine described the paper as a “mash-up of pseudoscience and gibberish.”
As I was pondering all of that, squinting at Seneff’s slides, I felt a hand on my shoulder and heard someone whispering my name. I turned around to see a man who was obviously security, in a black shirt, khaki pants, and what I thought might be an earpiece, though I didn’t have time to get a good look. I offered to go into the hall with him.
The man introduced himself as Andrew Gammichia, a former Michigan police officer. “I’m doing security. We’ll go ahead and get you a refund,” he told me, without much preamble, guiding me back towards the front of the hotel.
I asked why, and pointed out that I’d been sitting in the lectures, not recording, interviewing, or photographing.
“We’re very protective of the parents here,” Gammichia explained. “We want to make sure you’re not doing a hacked-up job.” He paused and looked over at me, seeming to actually see me for the first time. “Are you working with Brandy?”
“Me being here does not make you unsafe,” I told her.
Getting thrown out wasn’t much of a surprise, but this, admittedly, threw me for a loop. “Brandy” is Brandy Zadrozny, a journalist at NBC who, the day before AutismOne began, had published a story about women who claim to go undercover in Facebook anti-vaccine groups, to find parents who say they’re dosing their children with MMS, and call Child Protective Services on them.
I hadn’t shared Brandy’s story—and have never worked with her, and have only met her once, in passing, on the street—but I had shared a tweet she’d written about AutismOne being livestreamed on YouTube.
“No,” I told Gammichia, who seemed unconvinced.
So was the woman who, a moment later, took my attendee badge, unceremoniously chucked it, and began trying to figure out the process of giving me a refund. She was, as it turned out, Carolyn Gammichia, Andrew’s wife and another former police officer. (Today, the couple is active in autism-related causes and did a presentation at AutismOne this year about how autistic people can safely interact with law enforcement and first responders.)
“Weird that you posted that story about the women in the Facebook groups,” Carolyn told me, disapprovingly, as she punched keys on a laptop, trying to find my conference registration.
“I didn’t write that or post it,” I told her. “You’re confusing me with another journalist.”
“Don’t do anything with my name,” Carolyn responded.
“I’m not agreeing to that,” I told her. “I am taking notes right now. You’re talking to a journalist.” I held up my notebook for emphasis.
“This organization has helped so many people,” she told me, in response. “It’s sad we have to worry as families about being safe.”
“Me being here does not make you unsafe,” I told her.
There was, seemingly, only one way for me to stay in the conference, as Carolyn told me a moment later: “If you want to write a rebuttal [to Zadrozny’s article], you’re welcome to stay.”
That seemed like an odd bargain, especially considering that MMS is seemingly one of the only protocols that’s truly controversial, even in the world of AutismOne. I didn’t understand why a story somehow defending it would win me continued access, but Gammichia, when she realized I was going to continue taking notes, declined to talk further. Instead, I accepted a cash refund and walked directly to the hotel bar. I sat down, stared into space for a moment, texted my editor, and then ordered a glass of wine.
Almost immediately, a man I’d seen before asked how I was liking the conference. I told him I was a journalist and had just been thrown out. He considered that for a moment, then told me he’s a former emergency room doctor who became anti-vaccine after his own son developed autism.
“We’re not anti-vaxxers,” he told me. “We’re ex-vaxxers. If you could prove that there are safe vaccines, we’d take them. But they can’t.”
The man—who asked me not to use his name, so he could freely discuss his son’s medical diagnosis—told me his own, slightly convoluted theory about autism: that it was a “genetic predisposition” that’s been “sitting there for hundreds of years” that was spurred into life by “environmental insults,” starting with vaccines, then factors like glyphosate and electromagnetic fields.
As contorted as I found his ideas, the man seemed composed, sincere, and a little haunted. (When I asked how he dealt with feeling under constant threat from a government and medical establishment he saw as fighting against him, he semi-joked, “I live in Texas and I keep a lot of guns.”) But he was distilling a lot of ideas I’d heard from parents floating around the conference, a window into why they applauded so wildly at Kennedy’s ideas of bought-off politicians and a global conspiracy to sicken their children.
As contorted as I found his ideas, the man seemed composed, sincere, and a little haunted.
These are, after all, a group of parents who are dealing with the effects of a serious and sometimes life-changing condition. Many of them told me they feel abandoned, condescended to, and often ignored by the mainstream medical establishment and or even, more intimately, the doctors who first diagnosed their children. It’s predisposed them to listen to the kind of bad science peddled at AutismOne, and to dismiss anything skeptical or disapproving as fake news. (“If something helps people get better, you’ll see more and more negative news pieces on it,” one mother from Pittsburgh told me.)
“A lot of us live with a lot of guilt for vaccinating our children,” the man told me at the bar. He suggested, again, that we’re living in a world where many more people have hidden vaccine injuries: “Fifty percent of kids live with some kind of chronic illness. They’re gonna develop lupus, allergies, cancer.” He sighed heavily. “They just think they’re safe.”
The morning after I was expelled from AutismOne, I slept late, ate the single worst omelet of my life and flew home. Meanwhile, two of the anti-vaccine movement’s biggest names were taking the stage.
One of them was Del Bigtree, a former producer for a CBS TV show called The Doctors who, a few years ago, teamed up with Andrew Wakefield to produce the anti-vaccine movie Vaxxed and has been remaking himself, very successfully, as a celebrity in the anti-vaccine world.
Bigtree is a talented, if overheated, speaker; at a recent rally in Texas he pinned a yellow star to his own lapel, similar to those used in Nazi Germany to identify Jewish people. “For those Hasidic Jews in New York right now, who never thought this moment would come, I am saying, ‘I stand with you,’” he said at the rally. “How are we going to know if you’re not vaccinated, how are we going to arrest you? Maybe we’ll do it the same way we did the last time.” (After Bigtree’s appearance at AutismOne, he next popped up at an anti-vaccine rally held in Borough Park, Brooklyn for the Haredi community there.)
Bigtree is the son of Jack Groverland, who was the minister at Unity of Boulder for 40 years, and told the AutismOne crowd he himself grew up unvaccinated. (Bigtree told me in an email that his mother’s choice not to vaccinate her children was a spiritual one: “She believes very strongly that our bodies are designed by God to thrive and that good diet and exercise are much more important to developing a strong immune system than being vaccinated.”)
Bigtree told the AutismOne audience he’d spent years fruitlessly trying to get a film made before, as he put it, “I feel like destiny hit me.” He was introduced to Andrew Wakefield through a publicist, he told me later: “I received an unsolicited phone call from a publicist who asked if I knew who Dr. Andy Wakefield was and if I would like to meet him. Like any curious journalist I jumped at the opportunity to question one of the most controversial figures alive in the world today.” He jumped right onto a plane and flew to Austin to watch a rough cut of Vaxxed.
“Suddenly, my life’s journey made sense,” he told the crowd, reverently.
Bigtree’s speech was laden with references to miracles and portents, his conviction that he and Wakefield have come together to put an end to the scourge of vaccines. After he finished his biographical rundown, he turned to the good news, as he saw it.
“This is from the CDC,” he said. “47,700 American children born in 2015 have had no vaccines.” The crowd cheered. “1 in 2 American children is skipping one or more vaccines.” They whistled and applauded.
“I’ve heard people say we’re just a fleck,” Bigtree told them. “But you are not the headlines in the New York Times, the Washington Post, CNN, MSNBC, Fox, because this is a non-issue for them… this is terrifying them.” What’s more, Bigree added, “This vast movement of true anti-vaxxers is growing.”
Directly after him—and similarly dystopic in tone—was Andrew Wakefield, the father of the modern anti-vaccine movement. Wakefield called the measles vaccine “an absolute complete and utter failure.” But what Wakefield meant was not that measles itself was dangerous—that would have been a departure from most of the claims made at the conference—but that “man-made” measles were the problem. Vaccines, he claimed, had created a worsening version of the disease.
“Is this like a supervirus?” a worried mother of unvaccinated children asked Wakefield. (Wakefield responded, in short, that the answer was probably yes. He said, too, that there was “an argument” to be made for “going back to natural measles” as a form of immunity.)
Naturally, after nearly an hour of terrifying medical jargon interspersed with assurances that humanity was on the precipice of disaster, someone in the crowd wanted to know how to help save America. Wakefield smiled.
“We need to make a film,” he said. The room laughed and applauded; a sequel is in the works for Wakefield’s film Vaxxed.
Parents come seeking an answer to a frustrating disorder that left their kids in distress and their families in crisis, and are met with a broader and more amorphous kind of suspicion
AutismOne has a lot of presentations like this, filled with dense medicalese leading to extreme, panic-inducing claims about the approaching end of humanity. The medical terminology itself would be hard for anyone who isn’t a medical professional to adequately parse; I certainly had trouble doing so. But it’s the illusion of evidence that’s important. Multiple parents I spoke to told me they felt that they were getting access to specialized knowledge, insider information, and doctors who could offer them true hope.
Those increasingly wild sentiments are also paired, tantalizingly, with the promise of true recovery. AutismOne is full of presentations from parents, usually mothers, claiming they triumphed over skeptical doctors and unsupportive family members and brought their children out of autism, back from a place they often refer to as “gone.” It’s a journey, AutismOne presenters frequently assure the audience, that they’ll have to undertake alone.
“This isn’t an anti-vaccine conference,” one mother, a frequent attendee told me. She lives in the Detroit metro area, and also asked for anonymity to discuss her son, now a teenager. “These are people trying to get their kid well.”
What this looks like, in the end, is a process of radicalization. Parents come to AutismOne seeking an answer to a frustrating disorder that left their kids in distress and their families in crisis, and are met with something else: a broader and more amorphous kind of suspicion, fear and distrust, a sense that it’s not just their doctors who are against them, but the pharmaceutical industry, the medical industry, journalists, the world.
Because it’s not just vaccines, not anymore. I ran into more and more people claiming they had the MTHFR mutation, an extremely common genetic variant that the anti-vaccine movement increasingly claims is to blame for any number of serious health issues. (The authors of a 2008 paper that first proposed a possible, tentative link between MTHFR and an adverse reaction to the smallpox vaccine wrote a piece earlier this year saying their work has been “misinterpreted and used to inappropriately justify exemption of children from medically indicated vaccines.”) The conference this year was also full of chatter and sales booths touting products to protect from the dangers of 5G cellular network technology. Within this framework, the presence of QAnon celebrities who spoke on a panel moderated by Candyce Estave, AutismOne’s director of online communications, was both bizarre and unsurprising. (QAnon is the rabidly pro-Trump conspiracy theory, that increasingly seeks to tie together seemingly every dark suspicion of the last 50 years. Interestingly, that panel wasn’t posted on AutismOne’s YouTube channel, like all the other lectures, so we don’t know what kind of grand mysteries were revealed within.)
Alongside a fairly wild-eyed set of claims and theories are some very concrete policy goals. AutismOne parents are being encouraged to try as hard as they can, alongside “experts” and lawyers, to influence public policy in their states. At least three sessions this year focused on how to communicate with legislators and effectively lobby them — by downplaying their beliefs about vaccines and focusing instead on the angle of “medical freedom” and choice.
This potent mix is working, and it’s creating lifelong repeat customers. The Detroit metro-area mother of the teenage boy, who’d insisted that AutismOne was “not an anti-vaccine conference,” confided something in me, after we’d been talking for over an hour. She believed, she said, that her son was truly getting better.
After years and years of trying every treatment under the sun and spending six figures on things that weren’t covered by insurance, she wasn’t sure what had helped him, not exactly. She only knew that her son was put into mainstream education when he was in fourth grade, after years of special ed, and as a teen he was blossoming beyond what she could’ve imagine. “He’s a wonderful traveler,” she said. “He wants to be a pilot.”
As her son got older and his health improved, she told me, coming to AutismOne wasn’t about recovery anymore. “It’s more about the community.”
I congratulated her on her son’s progress, and asked, as neutrally as I could, whether she felt like AutismOne was also trying to sell her new products, new diseases, new worries. “You have to be discerning,” she told me. She added, “A lot of us are just doing the best we can. We’re trying to learn. And one thing we’re learning is the limitations of the system. You have to understand just how attacked and defensive so many of us feel.”
And for over a decade, and for seemingly decades to come, AutismOne has been there, and will be there, each and every year, helping parents to “learn.” The conference will continue to take those feelings, those frustrations, and turn them—not neatly, but slowly and inexorably — into a truly useful, profitable, and perpetual kind of suspicion. The kind of suspicion that answers to nothing.