How Online Filter Bubbles Are Making Parents Of Autistic Children Targets For Fake “Cures”
Analysis by BuzzFeed News found that more than half of the most-shared scientific stories about autism published in the last five years promote unevidenced or disproven treatments, or purported causes.
It started simply enough – with suggestions that her child should follow an unremarkable-sounding special diet. “They did these tests: a stool test and a urine test,” Layla (not her real name) tells BuzzFeed News. “I can’t remember where they were from – not the NHS, obviously, but some lab. The results had all these red markers.” The tests, from an alternative medicine practitioner who was recommended by and paid for by a major charity, apparently showed that Layla’s son, an autistic boy who was 3 at the time, had various issues with his gut and his metabolism. “I was shocked,” says Layla. “I didn’t realise – my son had all these deficiencies, these toxins in his system.”
The tests recommended a gluten-, casein-, and dairy-free diet. “It didn’t seem like a really big deal,” says Layla. “I thought, gluten, it’s bread and pasta – it’s not a massive thing.” The practitioner told her to monitor her son’s sleep and behaviour, and to expect improvements in the symptoms of his autism if they followed the diet.
But that’s not all she told Layla. “In the first hour, she told us that there was a lot of science and research that proves that autism is caused by vaccines,” she says. “She said if the child has lots of bugs as a baby, ear infections, and antibiotics, it crashes their immune system. Vaccinations cause them to regress. MMR [the measles, mumps, and rubella vaccine] is the final thing that causes them to regress into autism.”
From there, the practitioner tried to lead Layla and her son down a rabbit hole of weirder, more intrusive supposed treatments for autism. “She asked me to join a forum, a Facebook group,” says Layla. Facebook groups and, in earlier years, internet chat groups have been a vital source of support for parents of autistic children. But they have also been a key recruiting ground for quacks and charlatans, preying on parental desperation.
The group Layla joined recommended “biomedical” treatments – which included gluten-/casein-free diets, but also supplements, vitamin B12 injections, and, alarmingly, “GcMAF” or “Rerum”, a dangerous stem-cell treatment that the Medicines and Healthcare Products Regulatory Agency (MHRA) calls “a significant risk to people’s health”.
Her practitioner also mentioned “chelation” – a potentially dangerous method of using chemicals to remove heavy metals from the bloodstream – and she was aware of another Facebook group pushing “Mineral Miracle Solution” (MMS), a much-hyped cure-all substance that is in fact a form of chlorine-based bleach, often given as an enema.
“Some of [the group members] were doing lots of supplements, going to doctors in the US, being told all this stuff, sometimes for a number of years,” says Layla. “It was overwhelming. It took a while for the penny to drop, but then I realised I couldn’t believe the stuff that was going on. I just started to question it, to question what they were doing.”
Layla’s story is not unusual. Pseudoscientific treatments exist for almost all diseases and conditions, but parents of autistic children seem to be disproportionately targeted by quacks and snake-oil peddlers, according to parents and experts spoken to by BuzzFeed News.
“The targeting of parents who have recently diagnosed children is very insistent,” says Sarah-Jayne Garner, a mother of an autistic son and campaigner for autistic rights, who is herself autistic. “It’s constant. The first thing anyone says to you is ‘Get them on a gluten-free diet.’ It’s not backed up by any kind of serious science, but parents who are new to autism just don’t have the tools and knowledge to assess what’s being presented to them as solutions to what they’re told are their problems.”
There are hundreds of websites and Facebook pages that claim that autism is caused by vaccines, and which promote “cures” – often substances that can be bought via that website. And the stories they share are often hugely viral.
Analysis by BuzzFeed News found that more than half of the most-shared scientific stories about autism published online in the last five years promote unevidenced or disproven treatments, or purported causes.
The 10 most-shared stories that claimed to present scientific information about autism
Data from BuzzSumo, for stories published between 15 August 2012 and 15 August 2017.
The analysis used data from BuzzSumo, a company that tracks social sharing across multiple platforms including Facebook and Twitter, to find the most shared webpages about autism over the past five years. It then manually extracted the top 50 that claimed to present scientific or medical information about autism, such as reports on research or stories that claimed to focus on causes, or “cures”.
Those that primarily promoted a disproven or unevidenced theory about autism (for example, ones that advocated for links with vaccines or glyphosate fertiliser, or which advanced pseudoscientific cures) were classified as “unevidenced”, while those that provided an approach based on good-quality research or objective reporting were classified as “evidenced”. The categorisation erred on the side of caution, putting ambiguous or speculative articles into the “evidenced” bracket.
It found that more than half (28 out of 50, or 56%) of the most shared stories published between August 2012 and August 2017, including both of the top two, were unevidenced. Between them, the unevidenced stories were shared 6.3 million times, compared with around 4.5 million for the evidence-based stories. The top story, “Courts quietly confirm MMR vaccine causes autism”, was shared almost a million times and appears twice on the list from two different sites. As this Forbes story from 2013 explains, it is false.
Of the top 10 most shared stories, five were unevidenced.
Other unevidenced stories claim that Amish people don’t “get autism” and don’t vaccinate (again, false: They do vaccinate, and they are diagnosed with autism, albeit both at lower rates), and that the use of a particular agricultural weedkiller will lead to 50% of children being autistic by 2025. (There’s no evidence linking the weedkiller to autism, and the 50% figure is a crude extrapolation of the upward trend in the autism rate, which is probably due to improved detection and changes to diagnosis.) Another claims that the US Centers for Disease Control has committed “fraud” to cover up a “340% risk of autism”, which appears to have been based on a study in the journal Translational Neurodegeneration that has since been retracted over a conflict of interest and questionable methods. These same stories, and a few other similar ones, appear over and over again, on different sites, in the list of “most shared”.
These stories are often shared via Facebook groups. The Facebook group “AutismCD” advocates the use of an MMS-like bleach product called chlorine dioxide or CD. Another Facebook page, Healing The Symptoms Known As Autism, promotes the sale of a book of the same name, which in turn promotes a clinic in South America that treats autistic children using CD. BuzzFeed News has written in the past about Autism Mothers, a UK-based Facebook group whose users discuss various alternative treatments and link to websites selling MMS and GcMAF.
Outside Facebook, there are major websites that promote false or misleading claims. Natural News, a big US site, has repeatedly linked autism with vaccines and promoted unscientific treatments, such as chelation, GcMAF, and MMS. SafeMinds, a site “focused on identifying the environmental factors” behind autism, has likewise repeatedly linked vaccines and autism. Generation Rescue, a site set up by the US celebrity and anti-vaccination campaigner Jenny McCarthy, has also promoted both vaccine–autism links and treatments including chelation and gluten-/casein-free diets.
Parents inside these bubbles can find themselves being swept along by the flood of possible treatments. A writer on the anti-pseudoscience blog Left Brain Right Brain infiltrated several such groups in the early 2000s and found the story of a mother who had subjected her 7-year-old son to 49 different treatments, including chelation, hyperbaric oxygen therapy, and various gluten- and casein-free diets, over a period of several years.
This isn’t an academic concern. Some of these treatments can be dangerous – there have been deaths linked to both MMS and chelation, and medical practitioners have been struck off for prescribing them. Earlier this month, a doctor was accused of treating autistic children with chelation. Police are investigating a Cheshire woman who apparently gave her son “bleach enemas”, using MMS or chlorine dioxide, because she believed his autism was caused by parasites; it is alleged that these enemas have damaged the lining of her child’s gut. There’s a blog called One Drop at a Time that documents “the CD journey of a child with autism”, in sometimes unsettling detail.
In 2010, the Food Standards Agency called MMS an “industrial-strength bleach” and warned against its use; at least one death has been linked to it. CD is a similar substance. NICE, the National Institute for Health and Care Excellence, explicitly warns against the use of special diets or vitamin supplements to treat the “core symptoms” of autism. The MHRA says that GcMAF, which Layla was offered, is dangerous.
“This thing about alternative facts and fake news,” Mike Stanton, another campaigner and a father of an autistic man, tells BuzzFeed News, “we’ve been living it in the autism community for 20 years. People gradually disappear into little bubbles – private email groups, Facebook groups. And then they seek confirmation.”
Dr Michael Fitzpatrick, a retired GP whose autistic son is now 25, says he used to see the effects in his clinic. “I’d come across parents who’d been drawn into it to varying degrees,” he says. “I ran a baby clinic, giving immunisations, and all these nervous parents were coming in. I remember vividly one parent bursting into tears, saying she blamed herself, for giving her child the MMR. And others saying ‘Can I get a prescription for XYZ?’, whatever they’d seen on the internet. Gluten-free diets or whatever.”
Discussion around autism can be seen as an early example of the filter bubbles online, where algorithms and content shared by like-minded people mean that many of us unknowingly see only things that reinforce our existing beliefs, leading us towards a polarised view of the world.
The rise of social media has made it easy for these bubbles to form in recent years. But for parents of autistic children, it started much earlier – before Facebook even existed, and years before it reached its current ubiquity. Parents swapped stories via email and message boards, especially a bunch of sites on the Yahoo Health groups that sprang up in the late 1990s and early 2000s. They included places like as Environment of Harm, a Yahoo group set up to discuss “vaccine damage and mercury poisoning and other environmental toxins as it relates to autism”; GFCFKids, “a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets”; Chelatingkids2, “for parents and/or family members of children with autism who are seeking biomedical intervention”; and Autism-Mercury, focusing on “the increasing incidence of autism [and] the potential link between excessive mercury exposure via thimerosal in infant vaccines”.
At their peak these groups had thousands of users each and thousands of posts a month. These numbers have since dwindled significantly. That is partly, says Fitzpatrick, because the anti-vaccination movement has lost a bit of momentum in the last 10 years – but it’s also because much of the Yahoo groups’ traffic has since moved to Facebook or the wider internet.
In the new groups and sites there are memes that are used to quickly rebuff contradictory ideas. “Anything that goes against it is ‘tobacco science’,” says Stanton. “It’s the drug companies financing the studies that tell you vaccines are safe, and of course they can’t be trusted, because that’s what happened with cigarettes.”
Jonathan Green, a professor of child and adolescent psychology at the University of Manchester, who specialises in autism research, says it’s “oversimplifying” to say that the prevalence of quackery around autism is the fault of the internet, but that there is some truth in the idea. “Like a lot of things currently there’s a culture, amplified by the internet,” he says. “A rebellious, anti-establishment, anti-expert thing around, saying the doctors and establishment don’t get it, it’s all a conspiracy. It’s not specific to autism; it’s even more virulent around chronic fatigue syndrome.”
The origins of this rebellion against the medical and scientific establishment may be understandable. That establishment’s role in the history of autism has not always been glorious and if any group is entitled to distrust scientists and doctors, it’s the parents of autistic children. Parents have been “blamed” for their children’s autism, which was thought to be psychological or even caused by parental neglect, and disbelieved when they disputed this. Parents had to do the spadework themselves to show that autism is a neurological condition.
This confusion and misinformation stretched back years. “The name ‘autism’, from the Greek ‘autos’, self, was coined in the early 20th century, to suggest that a person was locked inside themselves,” says Green. “It’s a misnomer, but it’s stuck.”
In the same period, psychoanalyst Bruno Bettelheim was a key figure in promoting a hugely destructive image of autism: the so-called “refrigerator mother theory”. The idea was that parents of autistic sons and daughters were often cold and unemotional towards their children.
“Instead of thinking, Emotionally remote parent has emotionally remote child. Hmm. Genetics? Could be!, they went down the wrong path,” Stanton says. “Bettelheim was particularly obnoxious about it. He talked about ‘parentectomies’, removing the parent from the child.”
Bettelheim was later revealed to be a fraud, using invented data and treating patients who were not in fact autistic, then claiming to have “cured” them of autism. But his ideas left a lasting impact, and a distrust of science around autism. “Parents had to battle against this,” says Stanton. “They had to become ‘warrior parents’, to do their own research, to take on the science and argue that ‘No, our children are not disturbed.’
“And it created a mindset. A psychiatrist told me once: ‘We told them it was refrigerator mothers, and the parents proved us wrong. Now we’re saying that vaccines don’t cause autism, and they’re determined to prove us wrong again.’”
In an example of how complex this history has been, one of the very people who helped to overturn the refrigerator mother theory, Bernie Rimland, became an anti-vaccine advocate. Rimland was an American psychologist and father of an autistic boy, Mike. His 1964 book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, was instrumental in moving mainstream science to treating autism as a physical, neurological condition.
But having forced scientific thinking off one false path, he started down another. “After he’d disposed of refrigerator mother theory, he started looking for biological markers,” says Stanton. “He got hooked into things like gluten-casein intolerances, or special diets and megadoses of vitamins to cure autism.” And, perhaps most damagingly of all, he started believing that autism was linked to vaccines. “There’d been an anti-vaccine movement in the US for a long time,” says Stanton. “They latched on to the warrior parents, and persuaded at least some of them that scientists had always been wrong about autism, and that they were wrong now.”
Specifically, Rimland thought that it was linked to thimerosal, a mercury-containing preservative used in some vaccines. Thimerosal is not and was never used in the MMR vaccine, but that didn’t matter. When the now-disgraced British gastroenterologist Andrew Wakefield’s “fraudulent” 1998 paper was published, falsely linking MMR to autism, Rimland appeared to endorse the fears it raised. Emails apparently from Rimland, published by an anti-vaccine campaigner on the site Age of Autism, link both thimerosal-based vaccines and MMR to autism. “These two vaccine scares are contradictory,” says Fitzpatrick, but it didn’t matter.
Rimland’s conversion appears to have been, at least in part, driven by the early Yahoo chatrooms. According to Age of Autism, a post on one of these groups helped bring him into the anti-vaccination camp.
Rimland gave the vaccine conspiracy, and biomedical approaches to autism, a major boost, especially in the United States. “He was a charismatic figure, one of the founding parents of the US autistic community,” Fitzpatrick says. “When he endorsed the vaccine stuff, promoted all sorts of treatments, because of his status in challenging the refrigerator mother theory it had quite an influence.”
The prevalence of unevidenced stories about autism, and parents’ vulnerability to them, can also be explained by the nature of the condition itself. A diagnosis often hits parents without warning, and leaves them desperate for some control over their children’s lives and their own. That combination can leave parents looking for answers, and looking for solutions, that mainstream medicine is unable to offer.
“One of the curious features about autism is the way it develops,” says Fitzpatrick. “Most autistic children seem to develop perfectly normally until about 15 or 18 months of age.
“That insidious nature lends itself to speculative theories about what causes it and how you might treat it.” Children get several jabs around this age, making the visible onset of autism easy to link to vaccines.
More than that, it can be a profoundly difficult condition for parents. “It’s a very profound and intriguing disability, in the sense of how it impacts on very basic social capacities,” says Green. Other neurological and mental conditions are more “understandable” to neurotypical parents: “If you imagine a kid with ADHD,” says Green, “they’re impulsive, they get into trouble, they have short attention spans.”
“I’m not downplaying ADHD, but the way autism affects social capacity is at a different level. It affects parents profoundly, and raises questions of ‘Why on earth this is happening?’ – it leaves people speculating, in a vacuum.”
And what makes parents more desperate, says Fitzpatrick, is that they often feel like they have no way of helping their child at all. “If you bring your autistic child to your GP and say you’ve got a problem, the GP will say ‘We don’t know what causes it and we can’t treat it.’ That’s very hard to live with,” says Fitzpatrick.
“So if someone comes up to you and says ‘Your GP is useless. I know what causes it,’ or ‘take these tablets’, or ‘swim with dolphins’, or whatever, then at least you’ve got something.”
He thinks that’s why dietary plans are so popular among parents of autistic children. “It gives you a feeling of control, and that’s exactly what the child denies you, because they’re so difficult to manage,” he says. “The one thing about having an autistic child is that you feel so impotent. Nothing seems to work; doing anything ordinary is so difficult.
“At least you can say ‘I’ll follow this diet, avoid these foods, have these foods, give these supplements.’ It’s very specific. It’s a programme that involves a lot of parental effort, and parents welcome that.”
A complicating factor in all of this is that autism is heritable – an autistic child is quite likely to have autistic parents. “This is generalising massively, but when autistic people find a problem, they try to fix it,” says Garner. “It’s how we’re wired, it’s one of our strengths.
“But when you’re told your child isn’t going to develop according to the norms and they’ll suffer and struggle, you desperately look around for any solutions.” Parents who struggled socially at school themselves – and especially those who haven’t yet realised that they are autistic – “can become terrified when our children don’t behave in ways that are accepted by other parents, at parties or in the playground,” she says.
The situation isn’t helped, Garner says, by an obsessive focus in the education system on milestones. “I’m an English teacher,” she says. “Any teacher will tell you that there’s a ridiculous focus on children meeting externally prescribed markers, so that school budgets are maintained and teachers are rewarded. Autistic children will fall outside those markers, often substantially. So the education system fails our autistic kids, and isolates them, and creates that terror and fear.”
Any scared parent would be vulnerable to charlatans selling quick fixes for their children’s problems, but it’s even more the case for autistic parents, says Garner. “We can be articulate, but we are vulnerable, we have social deficits, so we are rich pickings,” she says.
“Rich” is the word. The industries that have sprung up around so-called autism cures are lucrative – another reason why people have swooped in to take advantage of parents’ desperation.
“A lot of it is market incentives,” says Green. In 2015, 10,000 vials of GcMAF were seized by the MHRA from a site in Cambridgeshire. AutismCD has 8,600 members; the website that sells MMS itself claims to have treated 75,000 people for several conditions (not just autism) in Africa alone. Dozens of books offering dietary and medical “cures” for autism are available on Amazon. Garner told BuzzFeed News that people she knew had been offered autism-treating foot baths at £2,600 a go. The mother in the Yahoo groups infiltrated by Left Brain Right Brain in the early 2000s was spending around $3,000 (£2,300) a month on her child’s treatments, to no effect.
And most important of all, there are devastating, human consequences when autistic people are subjected to these treatments, which are often intrusive or even dangerous, and have no good scientific evidence for benefit. One autistic woman, who wished to remain anonymous for fear of online retribution from anti-vaccination campaigners and would only speak to BuzzFeed News via an intermediary, said that she had been subjected to cold baths – a procedure known as “packing” – and bleach enemas. “Some enemas were with castor oil and diluted bleach,” she said. “Bleach burns, and has a pungent odour. The enemas were once a week and I would run to get away as I couldn’t tolerate it. They’d hold me down. The enemas were very painful and had awful stuff that hurt. It made you shit a metre of poo.”
She was also forced to eat MMS: “My foster parents used to soak my food in it. They said it was to purify my insides.” Her experience is not uncommon: Garner says that she knows practitioners who offer MMS or chlorine dioxide enemas for their children.
She told BuzzFeed News that being told she needed to be cured made her feel “awful – like I’m somehow not worthy or good enough to be treated as equal by so-called ‘normals’.”
The message that this gives the wider autistic community is psychologically painful as well – they are being told that they are “damaged”, a claim that an increasingly large number of autistic people reject. “There's this big movement, especially among the more able, to say ‘I'm not a damaged neurotypical, I'm a functioning autistic person,’” says Stanton. “It’s a movement away from seeing autism as a pathology. There’s a whole world out there of people arguing for autism acceptance, that autistic people have value and aren’t just damaged goods.”
Garner agrees. “It’s not that we don’t see autism as a disability,” she says. “The community is very honest about the fact that we’re disabled. But we don’t need our children being prescribed bleach enemas.”
Stanton says that while autism brings with it real problems, autistic people see it as part of them. That’s why, he says, the community rejects the “person-first language” that is often preferred when talking about people with disabilities: “‘I'm not a person with autism, my autism is part of who I am, it helps to define me, I am autistic,’” he says. He tells a story he heard from a professor: “A young autistic man came into his lab, and the professor asked: ‘If there was a pill for autism, would you take it?’ And the young man said ‘I’d take half the pill.’”
BuzzFeed News spoke to Fiona O’Leary, an autistic woman and anti-pseudoscience campaigner who has five children, two of whom are autistic. She agrees that the suggestion that she and her children were “damaged” was enormously painful. “It hurts us a lot personally,” she says. “I feel outraged, and I fear for the autistic community. I don’t think that people see us as worthwhile.
“My son is 13, he’s autistic, and he’s able to read this stuff. He’s scared. It’s making unnecessary mental health issues for people, adding to the challenges we have – and we do have challenges. The quacks are waging a war on us.”
She says that the rhetoric around the biomedical and anti-vaccine movements makes it sound like “autism will come in the night and change your child in the crib. It hurts when people say these things about your child, and it hurts him too. People don’t think autistic children are aware, but they are. Every day you get a new scar.”
Recently there have been real breakthroughs, scientifically informed breakthroughs, in improving the lives of autistic children and their parents without attempting to “remove” the autism. Green has been involved in the Pre-school Autism Communication Trial, which teaches parents effective ways of interacting with their autistic children, and which has seen significant reductions, persisting for several years, in the severity of some of the more negative symptoms of the condition.
“The basic idea is that it’s altering the social learning environment of the child, and we do that through using the parents as co-therapists,” he says. “Not saying there’s something wrong with the parenting. It was amazingly effective. It doesn’t cure autism, but it helps things get better.” He says there may in future be effective biological treatments as well, and the two would be used together. “It’s unlikely that there will be any miracles,” he says, “but over time, it could be fairly transformative.”
But after all this troubled history, the tide of quackery may be ebbing – at least in Britain. Andrew Wakefield himself has moved to Texas with several other British anti-vaccination campaigners, including the Autism Trust’s Polly Tommey. Internet groups are much less active than they were before: “If you see the JABS forum [a prominent anti-vaccine group], it’s treading water compared to 10 years ago. Tommey couldn’t get much traction here so she went to the States. Lots of the clinics are just operating out of someone’s back room.”
That’s partly, says Garner, because more information is becoming available. “There’s still a lack of good info for parents,” she says. “But we’re now starting to see things like non-speaking autistic people writing about their experiences of the treatments of these quacks. It’s still quite new, and their voices haven’t been amplified in the way that those of the wealthy groups supporting ‘cures’ have.” But it’s a start, she says.
Layla’s son is now 6. After those first few weeks three years ago, he didn’t undergo any more biomedical treatments. “I go to a lot of parent meetings, coffee mornings with parents of autistic children,” she says. “And I don’t think they really know about all this stuff that’s going on on the internet. It’s still going on underground.
“My son goes to a special school. I speak to a lot of parents, a lot of staff, and I don’t know any kids there on a gluten-free diet. He’s doing really well now.”
Additional reporting by Tom Phillips