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Thursday, August 31, 2017

How Online Filter Bubbles are Making Parents of Autistic Children Targets for Fake “Cures”

From Buzzfeed

August 28, 2017

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

Story Type Shares
  • MIT Researcher: Glyphosate Herbicide will Cause Half of All Children to Have Autism by 2025 849K. UNEVIDENCED.
  • Study Of 95,727 Kids Re-Confirms That MMR Vaccine Not Linked To Autism 625K. EVIDENCED.
  • Courts quietly confirm MMR Vaccine causes Autism 514K. UNEVIDENCED.
  • The Amish Don't Get Autism, But they Also Don't Vaccinate 434K. UNEVIDENCED.
  • The results of the latest study about vaccines and autism are in, and they're not surprising 306K. EVIDENCED.
  • Autism's Gut-Brain Connection 282K. EVIDENCED.
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 U.S. 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 U.S. site, has repeatedly linked autism with vaccines and promoted unscientific treatments, such as chelation, GcMAF, and MMSSafeMinds, 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 vaccineautism 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.

Fears that vaccines, such as MMR, caused autism led to
a dangerous drop in vaccination levels in the UK.

“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.”

Bernard Rimland (second from right). On the right is Kerri Rivera,
author of Healing the Symptoms Known as Autism, an advocate
for the use of chlorine dioxide treatments to cure autism.

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.”

Andrew Wakefield arrives at the GMC hearing where he was found guilty
of gross misconduct and struck off the medical register.

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.”

Parents are often told to put their autistic children on gluten-,
casein- and dairy-free diets to "treat" the condition.

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.

Pediatric Integrative Medicine - American Academy of Pediatrics Clinical Report

From the American Academy of Pediatrics

By Hilary McClafferty, Sunita Vohra, Michelle Bailey, Melanie Brown, Anna Esparham, Dana Gerstbacher, Brenda Golianu, Anna-Kaisa Niemi, Erica Sibinga and Joy Weydert
August, 2017


The American Academy of Pediatrics is dedicated to optimizing the well-being of children and advancing family-centered health care.

Related to this mission, the American Academy of Pediatrics recognizes the increasing use of complementary and integrative therapies for children and the subsequent need to provide reliable information and high-quality clinical resources to support pediatricians.

This Clinical Report serves as an update to the original 2008 statement on complementary medicine. The range of complementary therapies is both extensive and diverse. Therefore, in-depth discussion of each therapy or product is beyond the scope of this report.

Read the complete AAP report HERE.

Instead, our intentions are to define terms; describe epidemiology of use; outline common types of complementary therapies; review medicolegal, ethical, and research implications; review education and training for select providers of complementary therapies; provide educational resources; and suggest communication strategies for discussing complementary therapies with patients and families.

  • AAP — American Academy of Pediatric
  • ACIMH — Academic Consortium for Integrative Medicine and Health
  • ADHD — attention-deficit/hyperactivity disorder
  • CAM — complementary and alternative medicine
  • DO — Doctor of Osteopathic Medicine
  • DSHEA — Dietary Supplements Health and Education Act
  • FDA — Food and Drug Administration
  • IBS — irritable bowel syndrome
  • NCCIH — National Center for Complementary and Integrative Health
  • NHIS — National Health Interview Survey
  • NIH — National Institutes of Health
  • OMT — osteopathic manipulative treatment
  • RCT — randomized controlled trial
  • TCM — traditional Chinese medicine

The National Center for Complementary and Integrative Health (NCCIH) of the National Institutes of Health (NIH) (1) defines complementary therapies as evidence-based health care approaches developed outside of conventional Western medicine that are used in conjunction with conventional care.

Examples of complementary care include the use of acupuncture to treat migraine headache (2) and clinical hypnosis to improve symptoms of irritable bowel syndrome (IBS). (3)

The term integrative health describes the blending of complementary and conventional therapies by the practitioner to include all appropriate therapies in a patient-centered and evidence-informed fashion. In an integrative approach, evidence-based complementary therapies may be used as primary treatments or used in combination with conventional therapies.

In contrast, alternative therapies are not evidence-based, are used in place of conventional care, and are not covered in this report.

Interest in the field of pediatric integrative medicine is driven by a number of factors, including the prevalence of use in children living with chronic illness, (4,5) the desire to reduce frequency and duration of pediatric prescription medication use, and the need for more effective approaches to preventive health in children. (6,7)

To date, consumer interest in and use of complementary therapies has outpaced training options in pediatric integrative medicine, leaving pediatricians with a desire for more training and familiarity with resources. (8)

For example, a 2012 survey of academic pediatric training programs revealed that only 16 of 143 programs reported having an integrative me (dicine program. (8) National initiatives to introduce pediatric integrative medicine into conventional pediatric residency training include programs such as the Pediatric Integrative Medicine in Residency program through the University of Arizona, initiated in 2012. (9)

Other teaching initiatives are underway through the American Academy of Pediatrics (AAP) Section on Integrative Medicine and through academic institutions affiliated with the Academic Consortium for Integrative Medicine and Health (ACIMH), a prestigious organization of more than 65 medical schools that offer integrative medicine research, education, and clinical initiatives (eg, Harvard, Yale, Duke, Stanford). (10)

This Clinical Report serves as an update to the original 2008 statement on complementary medicine. (11)

Download the complete report HERE (PDF; 23 pages).

Wednesday, August 30, 2017

Obama-Era School Snack Rules Slow to Change Student Eating Habits

From Education Week

By Evie Blad
August 24, 2017

While the Healthy, Hunger-Free Kids Act of 2010’s nutrition standards for school meals gobbled up headlines, a lesser known set of regulations created by the law is also bringing dramatic changes to the foods schools offer to students.

The “smart snacks in schools” rules set first-of-their-kind standards for the types of foods schools participating in the National School Lunch Program sell throughout the school day, even foods sold outside the lunchroom. Those rules set limits for items sold in vending machines, a la carte lines, and in-school fundraisers.

Advocates for those rules—which remain in place even as the Trump administration acted to loosen other school lunch requirements—say it may take time to determine their effect on students’ eating habits.

Researchers at Virginia Tech University surveyed the school eating habits of 6th graders at a cluster of Appalachian middle schools before and after the smart snacks rules took effect in 2014-15. They uncovered no significant changes in what students ate at school.

That’s despite the rules’ requirements that grain-based products must be at least 50 percent whole-grain. Other products must have fruit, vegetable, dairy, or protein as a first ingredient. Fewer than 35 percent of calories must be from fat, and the rules limit sodium, sugar, caffeine, and total calories.

Each state may set the number of fundraisers that schools can exempt from the nutritional standards each year.

Quiz: Which School Snacks Meet New Federal Rules?

Under the federal "Smart Snack" rules that took effect in 2014, snacks sold in schools must fall within the new federal limits on calories, salt, caffeine, and fat content. Can you guess which snacks made the cut?

Changing Habits?

It will take time to change the way students think about eating, rather than just shifting the food options that are made available to them, said Georgianna Mann, an assistant professor of nutrition and hospitality management at Virginia Tech who co-authored the study.

“I think [the smart snacks rules] are a good idea in theory,” she said. “But what I think they are really lacking is the focus on changing habits rather than shaving off a few calories at school.”

Mann listed a few reasons why students may have reported few changes in their eating patterns: Schools took some time to change the foods they offered, students brought snacks from home, and school fundraisers took advantage of state waivers from the rules to sell unhealthy foods.

She also cited “lookalike snacks” produced by savvy food companies with packaging that looks exactly like their original products, though the ingredients had been modified to comply with the rules.

Students may have eaten those foods without realizing it, skewing the survey results, and missing an opportunity to be more deliberate about changing what they eat both in and out of school, Mann said.

Rules Not Universally Embraced

Thirty-eight states and many districts have regulations on school snacks and vending machines that predate the federal rule, said Stephanie Scarmo, an officer with the Kids’ Safe and Healthful Foods Project, a collaboration between The Pew Charitable Trusts and the Robert Wood Johnson Foundation.

While it may take some time to gauge the effects of the federal smart snacks policy, previous research has demonstrated positive effects of those existing efforts, she said.

For example, a study of state rules in Massachusetts found that, as students purchased fewer snacks, participation in school lunch programs increased.

An analysis of existing research on foods available for sale at schools completed by the Kids’ Safe and Healthful Foods Project when the U.S. Department of Agriculture drafted the federal snacks rule suggested stronger school snack standards could help turn the tide on growing childhood obesity.

“The increase in child weight observed between 1988 and 2002 may have been prevented by an average reduction of 110–165 calories per day,” that analysis said.

Schools can more effectively change students’ habits by creating a local wellness plan that incorporates input from parents and community members, said Jill Turley, the national nutrition advisor with the Alliance for a Healthier Generation. That input might help shape “celebration policies” that replace classroom snacks with fun activities, she said.

And some schools have incorporated healthy eating into classroom work, such as assigning graphic design students to make advertisements for healthy vending machine options. Others have held student taste tests of snacks before restocking vending machines.

The rules haven’t been welcomed by all. The School Nutrition Association, which represents school nutrition workers, pushed Congress to relax the rules on what can be served in a la carte lines, claiming they were too strict.

A few high schools made headlines when they opted out of the school lunch program rather than comply with the rules. Without favorable on-campus options, students would take advantage of open-lunch policies to eat elsewhere, they said.

And some conservative policymakers at the state and national levels criticized rules that cover fundraisers and bake sales as federal overreach, even though those rules allow for state-level waivers.

In 2015, Texas Commissioner of Agriculture Sid Miller declared “cupcake amnesty” and said that “the Texas Department of Agriculture has abolished all rules and guidelines that would stop a parent from bringing cupcakes, cookies or snacks to school.”

Some other states granted broad waivers for fundraisers, covering virtually every day of the school year with an exemption.

Advocates for the snack rules say they represent an important culture shift, even though it may take schools some time to adjust.

“The biggest thing is that it helps to send that consistent message to kids throughout the school day…” Turley said. “If [students] go to the vending machine and have all of these unhealthy options, it sends an inconsistent message.”


How Students' Brains Are in Danger on the Field

August 14, 2017

Research makes clear the drastic effects of head injuries on young athletes, and advocates are asking states and schools to do more.

When Olivia Hayward was smacked to the ground during an especially scrappy soccer game, she didn’t worry about her head. It was her wrist that seemed off. A 90-pound high-school freshman playing varsity ball, Hayward routinely drew the attention of sturdier players on the opposing side. “I got knocked around a lot in every game,” she said. Hayward hauled herself up off the muddy field, played until the end of the match, and went directly to a hospital, where x-rays indeed revealed a broken wrist.

Three days later, her head started to throb. Light bothered her eyes, and nausea killed her appetite. The athletic trainer at school insisted that she take the concussion test, the regular protocol after a blow to the head; like all athletes, she had taken the test for a baseline read at the start of the school year.

This time, Hayward struggled to follow the shapes and colors flashing across the screen. “I failed!” she recalled. A doctor surmised that when Hayward snapped her head back, she’d suffered whiplash, which had concussed her brain. This was her second concussion.

She spent a fortnight “in sleep mode” and skipped school entirely for three weeks, relying on her parents to read aloud her text and email messages. She eased back into school, starting with one class a day, and sought extra help from teachers who in turn eliminated petty assignments and extended deadlines on missed tests and projects.

Her mother warned that one more concussion would rule out any future sports that involved using the head. “This was really scary for me, because sports are a big part of my life,” she said. Hayward had been playing soccer since she was 6.

As any harried modern parent can attest, sports occupy daily life for scads of teenagers: Nearly 8 million boys and girls played on a high-school team during the 2016-17 school year. And for many, especially those who compete in high-impact sports like football and soccer, concussions are a persistent worry. Findings from a recent study out of Boston University, the largest of its kind, surely will add to that concern.

After examining the brains of 202 deceased football players, scientists found CTE—chronic traumatic encephalopathy, the degenerative malady thought to be caused by brain trauma—in 87 percent of the brains.

Even the brains of young adults who had only played high-school football showed mild cases of the disease, leading to pronounced changes in behavior, mood, and cognitive function: hopelessness, impulsivity, memory loss, and substance abuse were typical among the afflicted.

Awareness of the dangers concussions pose seems to be growing among high-school parents, players, and coaches, thanks in part to sobering studies such as the latest one from BU. But concrete changes to laws and practices still lag behind the science. This is so partly because there is no overarching body to implement or enforce them, and partly because the culture of some sports, especially football, resists change.

“In many settings, the seriousness of the threat to the health of an athlete, both acute and long-term, from suffering a concussion is not fully appreciated or acted upon by athletes, their teammates, and, in some cases, coaches and parents,” said Robert Graham, the chairman of the Committee on Sports-Related Concussions in Youth for the Institute of Medicine, before a congressional subcommittee in 2014.

“Youth profess that the game and the team are more important than their individual health.”

CTE is thought to be associated with repeated blows to the head that often are beneath the diagnostic standard for concussions. “One single concussion does not appear to be a risk factor for CTE,” said Chris Nowinski, the CEO of the Concussion Legacy Foundation. But a concussion on top of the brain trauma caused by repeated, sub-concussive blows is cause for concern.

“A blow to the head that produces symptoms of concussion probably will count 100 times more than a sub-concussive hit,” said Dr. Robert Cantu, the co-founder and medical director of the Concussion Legacy Foundation. Advocates hope the attention on CTE encourages schools and youth leagues to better address the prevalence of brain trauma among student athletes.

Roughly 300,000 high school athletes suffer from concussions every year. According to recent research conducted at Northwestern University, the number of diagnosed concussions doubled between 2005 and 2015.

Scholars there studied a sample of injury data among high-school athletes in nine sports over that 10-year period, and uncovered some surprising findings: between 2010 and 2015, female soccer players faced an even higher risk of concussion than footballers did; boys baseball and girls volleyball showed the biggest jump in concussion rates; and in all sports played by both sexes, girls experienced greater rates of concussions than their male counterparts playing the same sport.

The rise in reported-concussion rates coincides with the passage of state legislation aimed at curbing brain injuries, as well as a surge of media attention to the problem. More athletes are coming forward to report moderate symptoms, which the American Orthopaedic Society for Sports Medicine suggests “may point to a lower threshold used by healthcare providers in diagnosing concussions in more recent years.”

But that doesn’t mean the head blows are inconsequential. A team of researchers from the Center for Injury Research and Policy that studied concussions among high-school athletes concluded in a 2014 report that the rise in diagnoses resulted from greater awareness among coaches, parents and athletes and not “an overdiagnosis of insignificant hits to the head.”

Some of those hits may be the by-product of year-round, single-sport play that many young athletes engage in, generating more bodily hurts of all kinds. “If you’re seeing more overuse injuries, you’ll probably see more concussions,” Nowinski said.

And, research suggests that concussions are still underreported. An exhaustive 2013 study by the Institute of Medicine on concussions in youth sports summarized the cultural barriers to reporting like this: “Youth profess that the game and the team are more important than their individual health and that they may play through a concussion to avoid letting down their teammates, coaches, schools, and parents.”

Some head injuries, of course, are too ugly to miss. During a scrimmage last August, a running back on the Kearny, New Jersey, high-school football team was knocked out when a linebacker from the opposing team lunged at him and they banged helmets. It wasn’t a proper tackle, said John Kryzanowski, the head coach of the Kearny team, and it didn’t help when his player landed head first.

“We immediately ran out on the field, and so did the trainer,” Kryzanowski said. Paramedics eventually arrived, and the player woke up, but the concussion kept him off the field for three weeks.

In addition to the state-mandated concussion training he has received over the years, Kryzanowski has educated himself on how to limit the injury in football, a sport he has coached for 14 years. He limits the amount of contact players experience during practice, requires the kids to practice their plays by running into soft bags rather than each other, and deploys “hawk tackling” to keep players’ heads out of tackles, among other measures.

Most youth-sports coaches, he suggested, are conscientious about keeping players safe. “I don’t want kids to put their futures in jeopardy,” he said, and “most coaches are afraid of lawsuits.”

“No one is really willing to change football.”

State lawmakers and sports governing bodies have taken some steps to respond to the science on concussions. By 2007, all states and the District of Columbia had passed modest legislation on concussions in youth sports, setting guidelines for when to remove an athlete from play after a suspected concussion, and suggesting when it was safe for the athlete to return. But just 21 states require coaches to be trained to recognize concussion symptoms, and no federal laws are in place that mandate concussion safety in high-school sports.

For its part, the National Federation of State High School Associations (NFHS), which sets standards and guidelines for the disparate sports governing bodies in every state, has come forth with a variety of proposed measures to reduce head injuries in all sports; it created an online concussions course for coaches, and suggested specific changes in how football is practiced and played.

In 2014, the organization went further, convening a special gathering of medical experts, coaches, and “stakeholders” to identify more detailed strategies for reducing head injuries in high-school football; they came up with nine “fundamentals” to minimize dangerous contact. The NFHS has consistently emphasized that its state membership organizations are doing their due diligence to reduce the risk of injury among student athletes.

But the NFHS is a federation, not a governing body like the NCAA, and all of the proposed changes were just recommendations. “We do not have the mandated authority to say ‘you have to do everything that’s in here,’” said Bob Colgate, the director of sports and sports medicine at the NFHS.

Diana Coyne, co-chair of The Parents Concussion Coalition—one of countless grassroots organizations that has sprung up over the last decade to raise concussion awareness and force legislative action—began “poking” the NFHS in 2014 to get tougher on the number of permissible contact practices in football, arguing that the bylaws in all state sports organizations profess allegiance to NFHS rules. Coyne began lobbying to change the concussion laws in Connecticut after her high-school son suffered several head injuries playing football that he didn’t report.

“We’ve pushed them to make it a rule, because states will follow,” she said about the national sports federation. High-school football players are in particular need of protection, she said, because some play both varsity and junior varsity, and offense and defense—or they play every minute of every game, which is never expected of college or professional players. So far, the NFHS has resisted adopting more forceful language, a hesitation Coyne attributes to the culture of the sport. “No one is really willing to change football,” she said.


Some parents of concussed kids go on, like Coyne, to become activists. The majority who don’t are left on their own to manage the uncertain aftermath, including their own fears. Sarah Sangree remembers when her sixth-grade daughter, Annabel, clanged helmets with another ice-hockey player and damaged her head. That evening Sangree panicked, checking on Annabel every few hours to make sure she didn’t die in her sleep. The injury turned out to be mild, and Annabel missed just three days of school.

“As concussions go, we were incredibly lucky,” Sangree said.

One mother whose three children all suffered from concussions in high school stressed how terrifying it can be for parents to think about the damage they can cause to the brain.

She also expressed some regret that she was so willing to put her kids at risk of such a serious injury just so they could play sports.

Coyne believes that states and schools will get serious about preventing concussions in high-school sports when more parents and players start to sue. She thinks that insurance companies also might start to balk at the concussion risk in some sports, and require schools to implement stricter protocols in exchange for coverage.

And, as the science of brain injuries in adolescents advances, the damage caused by sports-related concussions and lesser hits to the head among the young will become too incontrovertible to ignore.

Nowinski thinks that much depends on what people will accept from the federal government. “It might seem odd for the federal government to be regulating sports, but they do regulate children’s-health issues,” he said. “I expect we’ll eventually see something if sports don’t put the health of the player first.”