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Last weekend I attended the Autism Trust’s Give Autism a Chance Summit. Billed as an “informative conference,” it actually felt like a Two Minutes Hate about the evils of science and medicine. Speakers harangued the audience about the evils of vaccination–including a bizarre show trial–and pushed snake oil on desperate parents. Some of the speakers touted services based on absurd, unproven theories; others lied shamelessly to the attendees. Although there were some positive messages on display, the conference focused on sowing fear and using it to move product.

Image altered from its original form. Original image credit as linked; licensed under Creative Commons BA-SY 2.0.

Parents of autistic children are reaching out for help.
What they find are people reaching for their wallet.

 

To be clear, the attendees of the conference and a number of the panelists were obviously there with the best of intentions. Some of the speakers worked hard to provide excellent, sensible advice about caring for children on the autism spectrum, such as how to help them use social media responsibly, how to make sure they’re safe at school, and how to make more severely afflicted children comfortable at dental appointments. Others, and numerous parents who came up to speak at an open-mike session, told moving and uplifting stories about their own personal experiences. The heart of the movement is certainly built around giving autistic people and their families support for their difficult journeys.

But rather than give the audience the best science or using a critical eye to weed out the opportunistic hucksters, the conference organizers emphasized the worst parts of the autism and anti-vaccine community. They made their priorities quite clear when they brought in Andrew Wakefield to take charge on stage. Wakefield is the disgraced British researcher who attempted to discredit the MMR vaccine with a fraudulent study, allegedly for his own profit. But the Summit put him on stage before an audience of parents, moderating panels that hawked products and services to them. He brought with him a veritable circus of anti-vaccine advocates and vendors eager to sell their products and services to desperate parents.

I can only summarize a small part of the summit, particularly the speakers who struck me as particularly appalling. One of them was Dr. Arthur Krigsman. Like Wakefield, Krigsman has a checkered past. Like Wakefield, he is a strong believer in an autism-MMR connection. Like Wakefield, he has failed to prove it. Like Wakefield, his failure to prove it has not prevented him pushing the theory. And like Wakefield, regulators have found reason to question his actions.

Krigsman was an expert witness in what are called the Omnibus Proceedings, in which a neutral court examined the evidence and found the evidence for an autism-vaccine link insufficient. The court discussed Krigsman’s background in one of its opinions, starting on page 138. It noted that Krigsman “left [his] hospital’s employ under questionable circumstances,” and that he had admitted that “the hospital restricted his privileges to perform endoscopies (an invasive procedure with some risks) in the belief that Dr. Krigsman was performing medically unwarranted endoscopies on children for research purposes.” He later moved to Texas and began working with Wakefield; the Texas State Board of Medical Examiners fined him “in part because of his ‘falsification’ and ‘attempted concealment’ of a prior disciplinary action by the Florida medical board.” The court further noted that Krigsman listed four “publications” on his c.v., but that only one of them was actually a publication.

Based on its website, Dr. Krigsman’s clinic is apparently still taking patients for a condition he calls autistic enterocolitis. Wakefield proposed that this condition exists; the medical community overall rejects the notion. A separate court ruling observed that “‘autistic enterocolitis” is not recognized as a distinct medical condition,” that “Dr. Krigsman’s testimony about autistic enterocolitis as a diagnostic entity was speculative and unsupported by the weight of the evidence,” and “that Dr. Krigsman’s view that autistic enterocolitis was a new bowel disorder was not recognized by the gastroenterology medical community or medical textbooks.” It found “the evidence supporting the regressive autistic enterocolitis phenotype to be scanty, and Dr. Krigsman’s problems with medical authority and his own ‘resume padding’ did not enhance his credibility.” This is not to say that autistic kids don’t have gut problems, but rather that the medical community apparently doesn’t feel there’s good evidence that a distinct condition such as autistic enterocolitis exists. Dr. Krigsman does not seem to have let these criticisms interfere with his business. The Autism Trust and Andrew Wakefield put him in front of an audience of parents looking for help and told them he was a hero.

They neglected to mention things parents might want to know before putting their kids in his care, such as the fact that a hospital “restricted his privileges to perform endoscopies (an invasive procedure with some risks) in the belief that Dr. Krigsman was performing medically unwarranted endoscopies on children for research purposes.” Instead, they gave him a platform to speak about why parents should let him perform endoscopies on their autistic children.

I’m not a doctor, and I can’t say that his advice was wrong or dangerous. (He goes into some of those reasons starting around 35:30.) Another panelist acknowledged (around 58 minutes in) that many doctors do not feel such procedures are necessary. That’s hardly surprising. Dr. Krigsman’s website includes a FAQ discussing “autistic enterocolitis” but neither poses nor answers the fundamental question: does it even exist? Outside of Wakefield and Krigsman’s coterie, the answer appears to be no.

It's never really free.

It’s never really free.

 

Krigsman obviously understands that many parents of autistic children might have trouble paying for his endoscopies. He and the other speakers explained some ways parents can work an insurance company to get coverage for his services and what to do if their carrier refuses. He also asked attendees to donate money to pay for the procedure. Given his background, I’m dubious that Dr. Krigsman’s advice was based on good, solid science. But I think it’s quite likely that he found new patients at the conference, and that the experience will enrich Dr. Krigsman.

Another panelist told parents that autism needs to be “reversed,” not “managed,” and that Western medicine is flawed because it doesn’t focus on that. Conveniently he was sitting in the same panel as Dr. Kendall Stewart, who had his very own vendor stall selling autism-themed supplements. If you missed the conference, and you have more money than you’d like, you can buy his wares online as well. Their catalog sells an “Autism Starter Kit” for nearly $200 (“$11 in savings!”).

 

Stewart isn’t as notorious as Krigsman or Wakefield, but he has made and failed to prove his own extravagant, self-serving claims. Interviewed for a 2013 article on the business of purporting to treat autism, Stewart claimed to have treated thousands of kids. But he couldn’t give any plausible explanation why he hasn’t performed evidence-based studies to demonstrate that his expensive treatments work. He suggested his methods were just too controversial to publish. I can’t find any indication that he’s ever tried. And what would be in it for him? The data might not support his claims. If he never tries to publish, he never runs that risk.

If a doctor charges you a lot of money for it, it must be medicine, right?

If a doctor charges you a lot of money for it, it must be medicine, right?

 

Although Dr. Stewart told parents that other doctors aren’t sophisticated enough to understand the issues of autistic children, at 1:24, he demonstrated an alarmingly high threshold for nonsense. When asked for advice on helping autistic children and their parents get restful sleep at night, he suggested EM radiation from wireless routers could be keeping them awake (at 1:36). Of course he did not offer any scientific support for the absurdunfounded idea that humans can detect such low-power radiation, consciously or unconsciously. But the Summit gave him a stage to peddle this nonsense—and expensive pills, powders and potions—to parents of autistic children.

The Summit’s preaching reached a fever pitch, predictably, during the Vaccines panel. (The panel starts about 2 hours and 40 minutes into that video,and continues into the next video at that site.) Two panelists, a plaintiff and his attorney who had failed to convince the vaccine court that their case had merit, complained at length that one of the government’s experts gave conflicting expert reports. Their presentation was naturally very one-sided, relying heavily on a document leaked from a closed case file and presented out-of-context without critical evaluation or discussion. Wakefield nevertheless called for blood, demanding that the government lawyers be punished for inconveniencing the anti-vaccine movement. He conducted a straw poll of the audience asking whether two specific Department of Justice attorneys should “stand trial on charges of fraudulent misrepresentation and obstruction of justice.” When he called for the attendees to cry out their support of his bizarre demands, it revealed the heart of the anti-vaccine movement: it relies on fear and confusion, and abhors the calm deliberation of courts and scientists.

There was no panel or discussion analyzing the scientific consensus on vaccines, or discussing the problems with anti-vaccine research such as Wakefield’s. The panelists didn’t talk about how parents can educate themselves and sort good advice from expensive nonsense. I suspect such advice would be contrary to their business interests. Instead, my impression was that many people on stage were there to create a culture of fear—Fear technology! Fear Big Pharma! Fear doctors! Fear GMO foods! Fear vaccines! There was no rational discussion of whether such fear was warranted. Instead, there were speakers and vendors touting goods and services to help parents manage that fear. Supplements, endoscopy, homeopathy, naturopathy, and chiropractic: the market was booming.

Wakefield and his celebrity guests weren’t hawking merchandise. There are no Wakefield-brand tennis shoes or patent-pending MMR-shielding magnetic bracelets. Yet. But he and the other moderators were there to benefit off the backs of their audience nevertheless. The panelists harangued the crowd for hours, reinforcing the message of fear and driving home the point that the world is out to get parents, especially parents of autistic kids. Wakefield, the other moderators, and the celebrity guests presented themselves as brave rebels against the system, and reaped the crowd’s adulation. The washed-up celebrities got treated like A-listers, and Wakefield was once again–for a little while–a serious and respected health care professional. For an exposed fraud, particularly one whose malfeasance has been so dangerous to children, it must have been intoxicating to stand in front of a room full of parents primed to see him as their children’s savior. For that day, in that place, he was free from the shame that follows his name.

He’ll send us the bill.

 

All image credits to their original photographers or rights owners. Hand image altered from original and licensed under Creative Commons BY-SA 2.0. “Electric treatment“, Illustration, and Without Equal images licensed under Creative Commons BY 2.0.

 

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Orac is reporting that a planned Congressional hearing into the National Vaccine Injury Compensation Program has been canceled. This is unambiguously good news; the hearing was probably a political favor being done for anti-vaccine cranks who despise the NVICP. Their hatred for the Program can be confusing, given how much better it is for their position than the alternative.

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This article by Natural News was brought to my attention a few weeks ago. The author (and founder of NN), Mike Adams claims:

“…the group that organizes so-called “TED talks” has been thoroughly hijacked by corporate junk science and now openly rejects any talks about GMOs, food as medicine, or even the subject of how food can help prevent behavioral disorders in children. All these areas of discussion are now red-flagged from being presented on any TED stage. This is openly admitted by TEDx itself in a little-known letter publicly published on December 7, 2012.”

Let’s go through a few of Mr. Adams’ allegations and compare with what the letter actually says. Continue Reading…

“A cousin of my mom’s survived Polio and lived the rest of his life with its effects. He was not expected to live past his teens but made it to his 40s. I am grateful that modern science can protect us from Polio and other diseases and I choose to take advantage of modern science to give my kid better odds of not dying from a preventable disease. I had heard a lot of noise from people claiming vaccines caused Autism, but never saw any clear evidence. It just seemed to me like people really wanted to point to something as the cause and they latched onto vaccines.”–Jennifer

I have been getting into a lot of discussions about whether vaccines are safe in the last few days. I’m not sure if it’s because of a post going viral about a (terrible) Italian court ruling last year (In contrast, American courts side with doctors and scientists on vaccine safety) or Jenny McCarthy’s recent hiring as co-host on “The View”, or simply (as a friend suggested to me today) the fact that a new school year is starting soon and parents are having to provide vaccination records to schools.

“(I got my children vaccinated) because the science supports it and I don’t want my kids to die. And civic reasons. It’s so straightforward.”–Britta

Whatever the reason, this week I’ve been in many conversations with individuals staunchly against vaccinations, parents who are very upset at the idea of unvaccinated children putting their own kids at risk, and parents who are confused and worried and want to know how to make the best decision possible for their children’s safety. I’m writing this for the third group of parents.
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Andrew Wakefield’s fraudulent report that the MMR vaccine causes autism has resulted in a generation of children (~age 10-16) who have a historically low vaccination rate (below 50% in some places). As a result, the rate of measles infection has skyrocketed in Britain:

There have also been outbreaks in the United States, with significant infections so far this year in many places, including Brooklyn and New Jersey.

The good news is that thanks to excellent public health outreach in England, vaccination rates are improving significantly. But I worry that many people still don’t understand the issues. Let me summarize them for you:
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