Infiltrating the AutismOne Conference
On Saturday, May 26, Women Thinking Free board members Ashley Hamer (also a contributor to Mad Art Lab) and Katie Hovany attended the AutismOne Conference in their local Chicago. This was the very same conference that had called three security guards and four armed police officers to escort the 5’2″ Jamie Bernstein out of their event a year earlier. Luckily, this year’s event went down without incident, and Ashley and Katie’s skeptical spy team was able to get some good intel.
In the post that follows, Ashley’s reporting is in normal text and Katie’s reporting is in bold text. Enjoy!
My welcome to the AutismOne conference was confusing. When I got out of my car, the first thing I saw was an SUV whose rear window was scrawled with the words “autismone.org – EFF PHARMA.” Immediately, there was an uneasy feeling in my stomach — these guys were surely going to smell me out as a skeptic and grab hold of their pitchforks. At the registration desk, my mind was filling with ways to avoid a stealthily thrown hypodermic needle when I saw a familiar meme — there on the desk, next to the pamphlets about how to heal your kid of autism by putting his head in an oxygen balloon, was the charming face of Ryan Gosling telling me, “Hey girl, I love the way you wear your AutismOne name tag…so don’t forget it!” At least they had a sense of humor.
We attended AutismOne on Saturday, though keep in mind that our $25 admission covered five days of talks. Like at any conference, the outer areas were filled with vendor booths and tables. This was dominated by what this community terms “biomedical” treatments, like supplements, special diet items (gluten-free and casein-free, of course), and, oh yeah, hyperbaric oxygen chambers.
I met up with Katie and we took our seats in the main ballroom to wait for Jenny McCarthy’s keynote. In the interim, they played a public service announcement from a guy named Dr. H.M. “Skip” Kingston. Dr. Kingston began with the facepalmiest of questions: “Did you know dietary supplements aren’t regulated by the FDA?” He then went on to explain all of the toxins he had found in various supplements, and expounded upon the project he was working on to purify these formulas. This sounded like he was doing noble work, but he also used the word “toxin.” Coin flip.
After a brief announcement from a purported vaccine-safety attorney named Bob Reeves (not to be confused with Robert Reeves, who is, amusingly, working to sue companies for chelation-related injuries) to say that “the claim that mercury doesn’t cause autism is a lie,” Jenny McCarthy took the stage. When she began to speak, I was immediately struck by how down-to-earth and personable she was. Here was the woman that the skeptic community had made out to be a vile, stupid, conniving witch, and all she made me want to do was tell her all about my problems. Except that my problems mostly had to do with her existence, so I didn’t figure that was a good plan.
A few examples: she cursed like a sailor (“How many new people? Good for you, good for fucking you,” and “How many husbands? You guys are definitely getting laid tonight”). A lot of what she said seemed to focus on letting the parents know that she’s been where they are: things like “It’s okay to be annoyed by your friends’ typical children,” would probably make me break down in tears if I had an autistic child.
She was so proud of everyone for “knowing the basics” so that she didn’t have to explain basic terms like “gluten” anymore, and introduced her medical expert, a physician who went by the name of “Dr. Dan.” She explained that after a diagnosis, mothers either become victims (and are bathed in sympathy) or become warriors. Then more banter between Jenny and Dr. Dan ensued, as well as Jenny’s description of her silent contempt for mothers gloating about their neurotypical children. Overall, she was very charming and relatable, if super raunchy. This is the woman who picked her nose on Singled Out, after all.
If you were to ignore the therapies she was recommending and simply take her talk in the context of its batshit surroundings, she is a very effective leader of that movement. Her personality sort of reminded me of Elyse’s, even. As I told Elyse later, they’re both down to earth, funny, and love to talk about their children’s poop. Rather than standing up as an untouchable expert on everything, they both let their humanity show and get their point across by being genuine and approachable. There is no question that antivaxxers know what they’re doing.
As far as the crazy, though, it was definitely there in spades. She suggested that the moms get tested for food allergies. “Turns out I have more than sixty,” she said. “Now I’m gluten-free, casein-free, and I’m getting chelated.” When she made her son Evan go gluten-free, he beat her up repeatedly, vomited regularly, and at one point went catatonic…or, in her words, “He went through a crazy period…but that’s how you know it’s working.” She now says her son has been officially un-diagnosed of autism, though at points during her talk she mentioned recent events involving him having seizures, going into cardiac arrest, and experiencing a temporary coma.
When Jenny revealed that she had gotten allergy tested and was “the most toxic person ever” (cue joke from Dr. Dan) and that she had started chelation therapy (both dangerous and unnecessary for most people, naturally), she used this as an example of how moms should take care of themselves the same way they do for their ASD children. Apparently, it’s important to try one therapy at a time and “the best tool you can ever rely on is your instinct.” Ah, yes. The famous mommy instinct.
A question from the audience referred to Jenny’s recent Playboy shoot, and how much she was donating to Generation Rescue. She recounted finding a school that would help Evan’s medical and academic issues, but with a $3,000 a week price tag. Luckily for Jenny, she was able to call up Hugh Heffner and take some photos to afford this (not judging, but obviously not a solution that will apply to anyone in the audience). Also, when Evan was first diagnosed, she mentioned that she was able to afford treatments after appearing in a tampon commercial.
This leads to a slightly surprising change Jenny has made to her message. We all know about her appearances on Larry King and Oprah, the rallies in DC, and the constant “Whaat me? I’m not antivaccine, I just want our vaccines greened.” Jenny referred to this as her “ripple effect,” which she is now done with! The ripple effect has worked, and now she is focusing on getting funding for families for the cost of biomedical treatments (up to $80 grand a year)! Surely this has nothing to do with the backlash she’s gotten from spreading misinformation that makes children sick.
Jenny closed with a video that is apparently somewhat outdated (“I know, it has the old stats,” she said). It recounted her story of Evan’s diagnosis and subsequent “cure” a year after. On a side note, some reports suggest that this might not have been the right diagnosis for Evan, but that he may have Landau-Kleffner syndrome, “a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage.”
Once she finished, Katie and I got a breath of woo-free air. In the midst of finding lunch, taking restroom breaks, and simply walking through the exhibition hall, we encountered a lot of parents of autistic children. We both felt for them — they seemed tired and worn out, but hopeful. At one point, I overheard a woman in the ladies’ restroom remark upon how many differing opinions there were at the conference. “I don’t have the training to tell them apart,” she lamented. This gave me cause for optimism. The parents weren’t all true believers, after all — they were simply mothers and fathers who wanted to help their children.
There seemed to be a slightly mixed bag of speakers at AutismOne. Some were obviously anti-vaccine and lost all credibility once they identified as homeopaths, and some seemed like they might have been (halfway?) legitimate researchers or medical professionals whose drinking of the antivax koolaid was a bit more insidious and would come out halfway through the talk.
David L. Lewis, antivax darling who took arms against the bad men who were victimizing poor Andrew Wakefield, spend an hour explaining why other people are wrong and Wakefield is right. Thomas Borody covered the exciting new field of fecal transplants, which he claimed cured everything from autism to multiple sclerosis.
Fecal Microbiota Transplants have been getting lots of attention on science podcasts and other news outlets lately. They seem to have a good deal of promise for people with C. difficile infections and various other GI issues. Borody talked about their documented (?) efficacy for conditions other than autism, including a few things I doubted it really could possibly cure. The way he tied this talk to the subject at hand was that he hoped the future (not yet available) powdered form of intestinal flora would be studied in children with ASD, as the current preferred method of recurrent enemas wouldn’t be viable/ethical for younger patients. I don’t doubt that some of the quacks in this community will not let such scruples stop them from offering this treatment: it’s not as bad as chemical castration, right? This is, of course, keeping in with Generation Recue’s clinging to the brain-gut connection as a pathological cause rather than a comorbidity for ASD. The way they jump on this concept as it gets researched in mainstream medicine (aka, “medicine”) reminds me of alt med people waving their hands and saying “quantum” when all else fails.
We also attended a (sparsely peopled) talk by a pediatric neuropathologist named Manuel Casanova. His research team has studied structures in the cortex called minicolumns. A minicolumn is like an insulated wire with an excitatory core and an inhibitory coating (or “shower curtain,” as they call it).
These are apparently more numerous and dense in individuals with ASD, resulting in fewer connections between different areas of the brain, but far more local short connections. There is proportionately more white (connective) matter and less comparative grey (nerve body) matter, as well as a greater brain volume overall. This is a concept that I believe is somewhat well accepted and established. It results in someone with savant-like talents but deficiencies in things like language and socialization, which require more integration in the brain.
The hand waving part was when he explained that it isn’t known if this is the pathological cause of the condition, or a comorbidity since people with ASD might have less stimuli and experience seizures. In other words, he was saying it still might be caused by the environment/”toxins”/vaccines/etc. and the small minicolumns might be the result and not the cause.
We stumbled into Janet Levatin’s talk, thinking it was a different one about gut issues being “the chicken or the egg,” but stayed anyway once we realized it wasn’t. It was definitely the most blantantly antivaccine/antiscience talk we’d seen all day up to that point.
It was basically a talk about unintended consequences (or ones apparent to her) resulting from medical recommendations handed down to parents and pediatricians. She claimed that the epidemic of peanut allergies is a direct result of peanut oil being used as an adjuvant in vaccines, which started in the ‘80s. Also, the proteins in the Hib vaccine are so similar to peanut proteins in weight and structure that they created sensitivity to peanuts for that population (according to Janet, and–according to a search–no one else really). Adjuvants are “trade secrets,” however, so you can’t see this on the packaging. She mentioned how the “Back to Sleep” campaign in the mid ‘90s meant to reduce infant deaths by SIDS resulted in more plagiocephaly and brachiocephaly, or misshapen heads. She explained that this is a common finding in ASD, but not a cause. Of course, the solution is changing sleep position and going to a chiropractor or osteopath, since of course, nothing bad can result from having someone adjust your baby’s cervical spine and fontanelles.
She then went on to link vaccination to ASD (surprise) and showed cherry picked graphs (“I don’t have the numbers for the last five years”), unproven correlations, and basically went off about “health freedom.” By the time she mentioned that homeopathy is part of her practice, I had to hold myself back from sneering and heckling. This was one of the straight up detached-from-reality talks, and a great preparation for Andrew Wakefield’s keynote address.
Finally, there was the head honcho of them all, Andrew Wakefield. His talk was entitled “The End Game.” Because, as he put it, “we’re in the final quarter of a very long game. Those with mainstream views have one leg in the tar pit and will soon become extinct.” Like McCarthy, he was charming (British accent. Done.) and said things that could only make a parent of autism fall in love with him. He repeatedly stressed that despite what the DSM 5 had to say (“An extraordinary waste of time, the DSM 5,” he snickered), he knew the truth: “Autism is not a psychiatric disorder.” Alongside this mantra, he repeated another trope that autism parents were bound to adore: “Parents who haven’t believed the mainstream view have turned out to be right every time.”
He compared images of a child with “Pink’s Disease” or mercury poisoning and claimed that this was, gosh, just so (superficially at best) similar to the symptoms or facial characteristics of a person with ASD. Also, the grandparents of people who’d had Pink’s were far more likely to have grandchildren (but not children) with ASD than the general population, since they apparently passed on a genetic sensitivity to mercury (1 in 25 vs 1 in 60). Orac summed this study up pretty well: “I’m not even sure they can say that a family history of Pink disease is associated with autism, given that the authors never verified the cases of ASD reported and there isn’t yet a solid estimate of ASD prevalence in Australia. In other words, the study says…nothing!”
One point he continuously drove home was that anecdote is so incredibly powerful (moreso than clinical data, don’t you know). He also mentioned that (long withdrawn) primate study where baby monkeys had delays in sucking behavior after receiving Hepatitis B vaccine, because that is the same as autism, especially with the large sample size of 14. This is true if “the same as” means “grasping at straws.” Also, ASD is a disautonomic disease. Again the brain-gut connection was emphasized (and it also causes Parkinsons!). Also, Staph, Herpes, and Cytomegalovirus all cause ASD, in case you were curious.
He crowed about the porcine circoviruses (PCV1 and PCV2) that were found in the Rotavirus vaccine. PCV1 and 2 are not known to cause disease in humans and did not cause any adverse reactions in children. The vaccines were discontinued until they could be sure to be safe and clear of PCV, but Wakefield didn’t let that stop him from showing a photo of a diseased pig. Everyone knows that if it looks that gross, it must be harmful to humans.
He was incredibly proud of his Lancet paper being “the most infamous paper in the history of medicine” and kept trying to draw parallels between the research it spawned and what happened with HIV/AIDS in immunology. If only AIDS denialists were right, then Wakefield might have a point!
Throughout the talk, he showed slides of yoga poses (for some reason) and many times closed his PowerPoint accidentally. He was very proud of his coauthor, Prof. Walker-Smith’s BMJ exoneration (which unfortunately does not transfer to him and has nothing to do with the Lancet paper being based in reality). He ended the talk with some more crowing, this time about bringing Brian Deer to Texas.
In general, though, I heard nothing new in Wakefield’s talk. Everything he said was simply singing the same antivax hymn: the FDA is out to get us, a bunch of disorders that aren’t autism actually are autism, why will no one hear us, it must be a conspiracy. I don’t use the word “hymn” lightly, though – there were people saying “mm-hmm” under their breaths and raising their hands and standing up to clap just like the most inspirational of church services. (When Wakefield mentioned Brian Deer in Texas, the woman behind me who was cheering on every (distorted/inaccurate) point he’d made clapped and muttered, “Yes, lynching!”) Yes, they still stand behind him after mainstream science proved him a fake. He’s their savior. He’s the one who told them that autism has a cause that’s curable. What’s not to worship?
Image credits: SUV and Ryan Gosling by Ashley, Jenny McCarthy by Steven Depolo, Jenny McCarthy on Oprah from Oprah.com, minicolumn image from Eide Neurolearning Blog, Janet Levatin from janetlevatin.com, Wakefield from The Telegraph, Wakefield with his book from autismone.org.