The anti-vaxxer movement perpetuates a phobia of autism

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ASPartOfMe
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29 Apr 2019, 11:26 pm

https://www.bupipedream.com/opinions/106579/the-anti-vaxxer-movement-perpetuates-a-phobia-of-autism/

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One of the most popular reasons behind anti-vaccination, its relationship to autism, is influenced by a societal autism phobia and the belief that the disorder is worse than a death-inducing pandemic.

Recently, the revival of vaccine-preventable diseases in the United States has mounted to proportions that haven’t been seen in more than a decade.

Fueled by safety concerns, political and religious beliefs and a substantial amount of misinformation, anti-vaxxers cite a wide range of reasons motivating their decisions not to vaccinate themselves or their children. Arguably the most popular of these is the belief in the connection between vaccination and autism.

As support for the connection between autism and vaccinations retains its societal foothold despite evidence otherwise, it’s clear that the deeper reasoning behind such a stance is simply inscrutable autism phobia. Condemning immunization due to the belief that it’ll completely alter someone’s DNA such that it results in autism is a baffling enough thought on its own. Yet underlining their vaccine condemnation is the condemnation of autism itself. It paints autism as some devastating curse to individuals and society, as the most serious trauma a parent could ever endure. On top of all the stereotypes already associated with autism, now people with autism must also bear the categorization of “vaccine-injured.” All of the resources that went toward investigating whether or not vaccines cause autism took away from the otherwise important direction of research figuring out ways to improve the lives of autistic people and their families. This dehumanizing discourse stands as an obstacle to a powerful embracement of neurodiversity, as well as human diversity in general. It takes the rightful position of autistic people from center stage of the conversation and places them on the back burner in a marginalized position. It further reveals the backward viewpoint that the actuality of a person with autism is worse than a potentially fatal, yet completely preventable, pandemic.


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30 Apr 2019, 4:42 am

Well said.



warrier120
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30 Apr 2019, 9:27 am

That also explains why anti-vaxxers often want to find a cure for autism. I'm guessing that anti-vaxxers tend to think that autism is crippling and that they would rather essentially kill their children then have their children live as cripples. They think it's euthanasia with a good purpose, but it's actually eugenics with a hateful purpose.

IMHO, autism is certainly better than death. Saying otherwise is potentially hateful and implies that autistic people are better off dead than autistic.


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30 Apr 2019, 9:55 am

warrier120 wrote:
... I'm guessing that anti-vaxxers tend to think that autism is crippling and that they would rather essentially kill their children then have their children live as cripples. They think it's euthanasia with a good purpose, but it's actually eugenics with a hateful purpose...

That's because to them we are all ...

... anti-social
... autistic by choice
... emotionless
... gifted / savant
... in need of care for our entire lives
... intellectually impaired
... prone to violence
... sociopathic monsters
... unable to adapt or adjust
... unable to communicate
... uncaring and selfish
... victims of an autism epidemic
... worthless as human beings

None of which is true.



firemonkey
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30 Apr 2019, 10:38 am

US measles cases reach 25 year high .


https://www.bbc.co.uk/news/world-us-canada-48095761



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30 Apr 2019, 10:57 am

Fnord wrote:
warrier120 wrote:
... I'm guessing that anti-vaxxers tend to think that autism is crippling and that they would rather essentially kill their children then have their children live as cripples. They think it's euthanasia with a good purpose, but it's actually eugenics with a hateful purpose...

That's because to them we are all ...

... anti-social
... autistic by choice
... emotionless
... gifted / savant
... in need of care for our entire lives
... intellectually impaired
... prone to violence
... sociopathic monsters
... unable to adapt or adjust
... unable to communicate
... uncaring and selfish
... victims of an autism epidemic
... worthless as human beings

None of which is true.


I would disagree with gifted/savant and autistic by choice.
They think we are ret*ds with no hope for the future except for maybe desperation measures such as bleach enemas, chelation and so on.
They think it was not our choice, that we are "vaccine injured".


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30 Apr 2019, 11:56 am

Fnord wrote:
That's because to them we are all ...

... anti-social
... autistic by choice
... emotionless
... gifted / savant
... in need of care for our entire lives
... intellectually impaired
... prone to violence
... sociopathic monsters
... unable to adapt or adjust
... unable to communicate
... uncaring and selfish
... victims of an autism epidemic
... worthless as human beings

None of which is true.

Ah, good old stereotypes. Reminds me of why I don't usually disclose unless I really trust who I'm disclosing to.


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30 Apr 2019, 12:13 pm

I agree with this article.

One trouble is that a lot of us autistic people are pedantic about being right and accurate and not messing around with stupid hypotheticals. So I get a lot of arguments against this like 'but it isn't true in the first place'. But my argument always is -

Even if vaccines caused autism, they'd still be better than not vaccinating as autism is better than measles.



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15 May 2019, 12:38 pm

i can't wait until that movement is over. I think it's vapid.


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15 May 2019, 3:47 pm

CockneyRebel wrote:
i can't wait until that movement is over. I think it's vapid.


I think we can all agree with that! Hearing about this antivax stuff makes my blood boil, and makes me feel sorry for the children who are being raised by these people...


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16 May 2019, 9:01 am

Image
Not sure why an anti-vaxxer would rather have their child die of polio, which can paralyze you, but I just decided to post this meme to make a point that their beliefs are ridiculous.


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16 May 2019, 9:58 am

What about the side effects on the public's perception of science?

"Publicizing ridiculous independent, unpublished scientific hypotheses at the same level as academically-scrutinized published scientific papers confuses the lay audience into thinking that all scientific research is similarly incompetent. In the Information Age, wherein everyone has the same ability to throw something online, not discriminating between "this is something some loonie put online" and "this is a well-researched study reviewed by independent authorities”" leads to all kinds of pseudoscientific nonsense, some of which just plain kills people."

Source: This Artiofab Article (last paragraph).


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17 May 2019, 3:19 am

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20 Jun 2019, 2:05 am

I HAVE AUTISM AND I'M OFFENDED BY THE ANTI-VAX MOVEMENT-Newsweek

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My name is Max and I have Autism Spectrum Disorder (ASD), but that's not my secret. What you'd never guess unless you sat down to talk to me is that the anti-vaccine movement drives me crazy.

A large portion of the ASD community is angered that anti-vaxxers are reducing our lives and experiences to something that should be feared and avoided. We are hurt by the prejudice of anti-vax parents who publicly declare they would prefer potentially deadly diseases for their children over ASD. That's an insult to the ASD community, and it works against our attempts to be accepted as a diverse and meaningful part of any community on our own terms.

And then, of course, there are the facts

In an interview with BusinessInsider, actress Jenny McCarthy told mothers she believed that vaccinations had "triggered" her son's autism. Some mothers listened to her. McCarthy said she looked "at autism like a bus accident, and you don't become cured from a bus accident, but you can recover." She argued that mothers would "take the flu, the measles, over autism any day of the week." But not vaccinating increases the risks of these and other diseases without ever lowering autism rates. According to the CDC (Center for Disease and Control), autism rates jumped from 2000 to 2018, even as thimerosal, the mercury-containing ingredient in vaccines that anti-vaxxers falsely blame for the non-existent correlation between autism and vaccination, was withdrawn from vaccines in 2001. In 2000, autism rates were 1 in 150, while in 2018, autism rates were 1 in 59. Anti-vaxxers constantly ignore these facts simply because they want to believe that autism can be prevented by avoiding vaccinations.

No one wants to harm their children. Parents who don't vaccinate their children are doing so out of love. They think they are protecting them even while they are drastically increasing the risk their children face and raise the chances of harming other unvaccinated children. As a result, the world has seen several Measles and Chickenpox outbreaks in the last ten years.

Even though there is no causal link between autism and vaccinations, I am scared that—due to cognitive bias and misinformation—anti-vaxxer parents are making a choice in favor of deadly diseases over ASD. Anti-vaxx parents don't seem to care how badly these diseases could affect and seriously harm their children because autism has been so vilified in their eyes it's been made to seem worse than those risks. Perhaps this is because they are under the false impression that people with autism will never succeed at anything.


Fake autism treatments show the lengths parents will go to “cure” their kids It’s not just dangerous. It’s insulting to autistic people like me. Sarah Karchack for Vox

Sarah Kurchak is an autistic writer from Toronto. Her first book, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, comes out in April 2020.
Quote:
Like many autistic people, I don’t handle background noise well. My senses and brain can’t separate it from any other sounds. It’s often just as loud as, if not louder than, what I’m trying to listen to. And the effort it takes to try to handle that issue while focusing often leaves me frustrated and drained.

I’ve been experiencing this a lot lately in regards to information, specifically around news stories that feature some terrible combination of anti-science or pseudoscience and autism panic. Whenever I see a story about a measles outbreak, or a headline like “Fake science led a mom to feed bleach to her autistic sons — and police did nothing to stop her,” I get that same overwhelmed and panicked feeling — and I’m just as incapable of tuning it out.

While there are many reasons parents choose not to vaccinate their children, the American anti-vax movement is fueled in part by privileged white people who have bought into conspiracy theories about the risks of vaccines, one of the most pervasive of which is that vaccines cause autism.

Then there’s another type of story I keep seeing: the largely underground phenomenon of parents using everything from turpentine to urine in an effort to “cure” their children’s autism. NBC News recently published an exposé on the dangerous and all-too-common practice of orally and anally administering bleach-based treatments to autistic children. In March, a UK ad watchdog organization ordered 150 homeopaths to stop claiming that they could cure autism through treatments such as giving children up to 200 times the maximum recommended vitamin C dose. Amazon recently stopped selling books that promote bleach as an autism treatment or cure.

None of this news comes as a surprise to me. I’ve been aware of autism-related vaccine conspiracy theories for as long as I’ve been officially aware that I am autistic.

Still, all of this adds up and contributes to the constant buzzing reminder that people continue to be ignorant and fearful about autism. It’s hurtful on a personal level. To be constantly reminded that a chunk of the world would rather risk public health crises or funnel bleach into their terrified child’s orifices than have or love anyone like you can’t help but weigh a person down. But what really bothers me is that innocent people are being endangered and abused based on what amounts to little more than overly simplistic and alarmist fiction. The autism that terrifies these parents and guardians is as divorced from the realities of autistic life as their methods are from actual science.

When it isn’t being caricatured in shows largely produced by and for non-autistic people, like The Good Doctor and The Big Bang Theory, autism is often characterized as a horrible way to live. We cost too much to raise. We destroy marriages, even though the statistics around our supposed home-wrecking powers were made up. A 2009 commercial for Autism Speaks directed by Oscar winner Alfonso Cuarón claimed that autism makes it “virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.” That particular ad has since been pulled, but the sentiment remains.

If I didn’t have a lifetime of experience with autism, I might be scared by these constant messages of doom too. How can we expect people to react to the possibility of loving and caring for an autistic person in a rational manner when the stories this world tells about us are, themselves, irrational? Our society isn’t going to make any meaningful progress against the anti-vax or snake oil cure movements unless we change the way we talk about autism.

I’m not saying we should give it a shiny PR campaign. Autistic people can face significant challenges as a result of both our neurology and a lack of understanding and acceptance. We — and our care partners, for those who need them — are desperate for better services and more financial and emotional support to help us exist in a world that wasn’t built for people like us. Even the most privileged among us face a suicide rate nine times higher than the general population.

Just because autistic life can be difficult doesn’t mean it’s worse than a death sentence, though. We have bad days, but we good ones and neutral ones too. We are human beings, and our lives have value. We don’t need to prevented or eradicated at all costs; we need better services and better public education than what we have now.

We are people, with all of the complexity of the human experience that entails, not a looming boogeyman. Treating us as such could be a far more powerful weapon against anti-science conspiracy theories than any statistic.


I am glad to see this perspective about the anti vaxx movement starting to appear in the mainstream media.


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21 Jun 2019, 2:02 am

Everything I Learned While Getting Kicked out of America's Biggest Anti-Vaccine Conference

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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.

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 “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.

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.

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.

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.”)

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.

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 heads. “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.”)

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.

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.”

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.

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’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.

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 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.

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.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

It is Autism Acceptance Month

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


alcockell
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Joined: 23 Jan 2007
Age: 53
Gender: Male
Posts: 108
Location: Reading, Berkshire, UK

03 Jul 2019, 9:02 am

This is f*****g terrifying - we were always fighting against Team Bernie Rimland back in the 90s...