Infiltrating the AutismOne Conference

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!

THE CONFERENCE

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.

JENNY MCCARTHY

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.

OTHER TALKS

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.

ANDREW WAKEFIELD

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.

Avatar of Smashley
Ashley Hamer (aka Smashley) lives in Chicago where she plays jazz saxophone, writes stuff, and does a lot of skeptickin'. She is currently recovering from being raised in the wooiest city in California and then living in Megachurch Texas, USA. Her tenor saxophone's name is Ladybird.

51 Comments

  1. Avatar of robofish

    Most of this is the same old stupidity, but this line was genuinely disturbing:
    “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!””

    Yikes. I guess there are some parts of America that really haven’t changed since the Jim Crow days… memo to Mr Deer, stay the hell away!

  2. Avatar of Elyse

    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.

    Vaccines cause vomiting, impulse control issues, and seizures and are bad.

    Cutting gluten from your diet causes vomiting, impulse control issues and seizures and are good.

    Got it.

    Also, Jenny made me cry and I wasn’t even there.

    Thanks, ladies, for going taking the time to attend this and working so hard to write it up!

    Also, thanks for not getting arrested!

  3. Avatar of Jamie

    Thanks for giving me an extra 2in! This is why we’re friends. =)

  4. Avatar of rbarnette123

    People love paying $25.00for a Celebrity to reaffirm their unscientific and completely stupid “beliefs”. The most dangerous thing about Autism is the Pharmaceutical industry and the prescriptions that “Doctors” (read: Quacks) throw at these children and that their stupid, lazy parents shove down their throats so they don’t have to do real parenting. Parents need to feel better about their “below average” child so they go to the Dr. for a “professional” evaluation that concludes in the positive diagnosis for ASD/ADD/ADHD and there we go, the Quack gets paid, the insurance company pays out and Big Pharma gets paid. It’s what makes the world go round, really. It’s really a wonder that our Health System is falling behind. I just can’t see why that is. We need a new model for health coverage based on treatment outcomes and not profit motive. We need to look at what South Korea, India and other leading countries are doing; they are progressive, adaptable, efficient, cost-effective and, bottom line, provide better patient care for less money.

  5. Avatar of Todd W.

    Nice write-up. Would have been interesting to see what the rest of the conference had (esp. the MMS promotional talk), though I fear it would have been utterly depressing. Anyone want to be that your names are now on a blacklist for future conferences?

  6. Avatar of JHSC

    I could not even finish reading this. I’m on the autism spectrum and these people frustrate and annoy me to no end.

    I did NOT get this way from a stupid fucking vaccine. You CANNOT change my complex set of symptoms by changing my fucking diet.

    Ugh.

    • Avatar of punchdrunk

      “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.”

      We’re just not committed enough to suffering to be cured.

      Fuck her. She’s torturing her son and trying to convince people to torture their children. Physically and psychologically. She’d rather we die than be autistic.

  7. Avatar of Buzz Parsec

    Ashley and Katie, thank you both for subjecting yourselves to this event, even if it didn’t produce the fun and drama of last year’s.

    I wonder if Wakefield honestly believes he can win his SLAPP against Brian Deer and the BMJ and ultimately get reinstated? Last year when I saw him speak at Brandeis, he was much more in the “Poor Poor Pitiful Me” mode.

    Did he talk at all about toxins or “regression”? These were two closely coupled points and seemed to be one of his core arguments in his Brandeis talk, but he was very unclear about it. I couldn’t tell if by “regression” he meant cases where children were developing normally, but then at the onset of autism lost skills they had previously developed, or if he meant that the autism symptoms regress as the child ages. He said regression is much more common during the recent great increase in autism cases. Which ever he meant (or a mishmash of both), he claimed it proved the toxins hypothesis. If he discussed this, did he make any more sense this time? It’s hard to dispute a claim that is so ambiguous!

    BTW, Janet Levitan was also there, feeding him a meatball in the Q&A, which he fouled off.

    • Avatar of Smashley

      He did talk about regression, and he did define it as a child developing normally, then losing skills. He didn’t use the term “toxin” all that much, if I recall; he was much more specific in citing mercury, PCV1 & 2, etc.

      Also, You just made me picture Janet Levatin spoon-feeding a sauce-covered meatball into Andrew Wakefield’s mouth. Buhhh.

  8. Avatar of AutismNewsBeat

    Great job! Did they give you an AutismOne tote bag?

    McCarthy is trying to distance herself from the anti-vaccine crazy, but it’s not going to work as long as she is president of Generation Rescue, a headlines at anti-vax conferences. Wakefield has to know he has zero chance of winning his libel suit. For him it’s all about playing the victim from here on.

    • Avatar of katiehov

      haha, oooh yes we got tote bags. and free coconut milk ice cream.

      and yes i felt kinda bad for jenny. she looked sorta like she was straight off the playboy shoot and all dry and bleached out, not like she looked in the video she showed. and she kept hinting at alcoholism. i wonder how much cognitive dissonance she has.

      what’s she going to talk about on her nbc show if she’s distancing herself from antivax?

      and buzz, yes, he mentioned some 17 year old who regressed at that age, but not from a vaccine, but from having measles or some actual illness. which, like, totally proves his theories.

  9. Avatar of Sullivan

    One thing–was that “Dr Dan” or “Dr. Jerry”? I seem to recall Jerry Kartzinel was her off-camera person.

    “When she began to speak, I was immediately struck by how down-to-earth and personable she was”

    Funny–I get turned off immediately by the “Don’t be one of those victims” schtick she pulls. Things like that make be suspicious. I found it ironic how she claimed, “some moms like the attention…” at the same time as Andrew Wakefield’s “munchausen syndrome” book was just released.

    “Now I’m gluten-free, casein-free, and I’m getting chelated.” –Jenny McCarthy

    I guess the Ben and Jerry’s was for someone else
    http://lockerz.com/s/175045906

    And the pizza was a prop
    http://lockerz.com/s/174491050

    And she went to the GFCF Taco Bell
    https://twitter.com/JennyMcCarthy/status/192822700148928512

    Someone posted more pictures and tweets, but I can’t find them without more effort than I care to do.

    “Parents who haven’t believed the mainstream view have turned out to be right every time.”–Andrew Wakefield

    Right. Like that whole mercury thing. And how chelation for two years recovers kids. And that bleach enema thing. And that Lupron thing. And, of course, that whole, MMR thing.

    And this is where we see that Mr. Wakefield’s integrity is seriously diminished. He not only won’t speak out against the obviously wrong and sometimes harmful practices that surround him, he embraces them.

    ” He ended the talk with some more crowing, this time about bringing Brian Deer to Texas.”

    Well, if Mr. Wakefield ends up paying for those trips (that whole Anti-SLAPP thing), he may be doing a little less crowing.

    “He also mentioned that (long withdrawn) primate study…”

    I believe that study resurfaced in a different journal.

    • Avatar of katiehov

      it wasn’t dr. jerry, i think it was dan rossignol. he just kept sticking to talking about omega 3s and melatonin.

    • Avatar of Elyse

      Awww… and thanks to you, Sullivan, I learned that Jenny McCarthy blocked me on Twitter.

      I guess I did something important?

  10. Avatar of Anne S

    Thanks for doing this, Ashley and Katie.

  11. Avatar of katiehov

    it was more or less my pleasure! except when i felt like stabbing myself in the face, of course.

  12. Avatar of Grand Lunar

    Excellent work!

    One part stands out to me:

    “Thomas Borody covered the exciting new field of fecal transplants, which he claimed cured everything from autism to multiple sclerosis.”

    Fecal transplants? Does this mean what it sounds like?

    People like Wakefield seem to have already entered in this field.

    • Avatar of AutismNewsBeat

      Yes, it’s what it sounds like. You find a donor to poop into a bag, then you put it in a blender, and inject the mess into a nasal-gastric tube. The bio-meddlers are totally into it.

      Is that why McJenny sells blenders?

    • Avatar of Chris_H

      Or you can collect the poo, let it ferment for a while, put it into pastry bag, and then insert like it was an enema. See:
      http://lbrbblog.wordpress.com/2010/12/09/bring-the-crazy-fecal-transplant/

      • Avatar of Elyse

        Yeah, when I mention this in one of my talks, I always warn people about how awful it is… then give them “it gets worse” warnings… because it’s probably one of the most disgusting things I’ve ever heard.

        It breaks my heart that these parents are so fixated on a cure that they can’t just not stick someone else’s fermented shit up their kid’s ass. When you’re at that point, holding a bucket you shit in weeks ago, that you let ferment in the garage, and you’re scooping it out to inject it into your kid, you really have to look at yourself and say, “Maybe I need to just love my kid the way he is. This is fucked up. This is not how you love your kid.”

  13. Avatar of sheviper

    Fantastic article! You guys obviously have more self-control than I do. Good job making a disturbing, kinda tragic topic quite funny, I like your writing styles :)! I’m currently doing research on probiotics & babies(which sounds woo-y, but bacteria colonises our skin&gut etc and things we do/eat/antibiotics/born through vagina or not etc affect our microbiome!). Most commercial probiotics are probably a waste of money though…
    Anyway– I have come across a paper or two on MS + gut bacteria. You cant CURE MS through fecal transplants but there is some weak evidence about the role of gut bacteria has on the development of your immune system. As your immune system is stimulated by bacteria that it interacts with, there is biological plausibility that certain gut microfloras could be associated with MS. So if you lacked microbial stimulation/got the wrong sort of stimulation, this could lead to abnormal functioning of your immune cells (which is what MS is, immune cells attacking the coating of nerve cells). Because of this, other autoimmune conditions such as Type 1 diabetes have also been linked to gut microflora (as has obesity, irritable bowel conditions etc- we don’t know too much about all the bacteria we have as many cant be cultured in labs yet with our current tech- although the human microbiome and the use of genetic seq is changing all this quite rapidly. I think all of the studies are a bit too early to tell what exactly is going on and whether there is cause/effect or another cofounder/just associated. Cranks take the smallest grain of science and manage to build a sandcastle out of it…Really annoys me.

  14. Avatar of CanadaLes

    I am hip-deep into some real woo as the mom of an autistic boy, who was diagnosed in December. My moms of kids with autism support group is a really good group of women who help me navigate the local system and red tape, and make sense of, and deal with, some behavioral issues, etc. By holy crap, the woo can be unnerving! I am non-confrontational by nature, and so far no one is advocating (or using) anything truly harmful (other than non-vaccinating, which happens everywhere). I think my head would explode if I attended an Autismone conference. Thank you so much for attending and reporting on this. I am still “the new girl” in the group, but at some point the woo might be too much and I will have to say something. Articles like this can only help my arguments be stronger, so thank you again!

    • Avatar of Janet Edghill

      Aloha, CanadaLes–please don’t take this entertaining article as anything close to scientific. I don’t know how old your child is, but the sooner you get treatment, the better–whether it’s medical, biomedical or ABA. Good luck!

  15. Avatar of katiehov

    yes, definitely, there is all sorts of interesting stuff emerging with the flora/gut-brain connection, no doubt about that! but yes, the sandcastle analogy is spot on.

    oh and luc montagnier was at 11:30 on friday, sadly i could not have missed work to see that, hopefully there is video somewhere.

  16. Avatar of skedasticity

    I do not at all agree with anti-vax or anything of the sort. I do however have a problem with people insinuating that a gluten free diet is woo. I get severe allergic reactions from gluten and have to avoid it at all costs because if I do not my intestines literally liquefy and try and exit my body post haste. I would never wish this issue on anyone as there is gluten hidden in so many products that it can make social eating a minefield.

    I am in online groups dedicated to Gluten Free diets and there is a ton of WOO to sift through. I don’t think a lot of people understand just how frustrating it is to have a medical issue and have doctors be unwilling or unable to help you. I can understand why there is so much woo around when people feel like they need answers and none are available. I could have easily gone with the woo and decided to go to a homeopathic “doctor” who would charge me money to do “muscle testing” for food allergies. It pisses me off to no end that people are being ripped off by these so-called homeopathic doctors because the real medical community has really not stepped up for people with these issues. I have to hold my tongue so as not to upset the people in my group so I can truly sympathize with anyone who has to deal with woo groups.

    I just wanted to make sure that people know that not everyone on a gluten free diet is doing it for shits and giggles nor are we all crazy woo freaks. It is possible to be a Gluten Free Skeptic!

    • Avatar of Otoki

      They’re not saying that gluten-free is woo. They’re saying going gluten-free to cure ASD is woo.

      • Avatar of Elyse

        No one is recommending that anyone allergic to wheat gluten eat wheat. Just that, as a general rule, gluten isn’t a bad thing. In the same way peanuts and penicillin aren’t bat things that generally need to be avoided or that will fix your problems if you avoid them.

        Unless your problem is anaphylaxis… then, avoid.

    • Avatar of Siveambrai

      Don’t worry. No one here thinks that it’s an across the board thing. I’m GF myself due to celiac’s and it’s well accepted. Actually if you go into the archives there were two(?) posts about a year ago with a medical doctor discussing a GF diet and what it can actually be used for.

      As a side note: If you have vomiting and seizures as a result of going GF your doing it wrong. Actually if you have that as a result of any dietary changes some shit ain’t right.

  17. Avatar of amm1

    When reading this, I kept thinking of the parents.

    Based on the families I know anything about, I suspect that a lot of the parents who attend have been through hell. Some of the kids are really impaired. Most families don’t have any experience with any sort of non-neurotypical kids, so they are at a complete loss as to how to relate to an ASD kid. They’re likely to get blamed by the people around them for their kid’s “lack of discipline.”

    And the mainstream mental health community is mostly worse than useless. We were lucky to stumble upon a good, caring therapist with training and experience in ASD. But many of the professionals we met with were awful. Frankly, most didn’t seem to see ASD people as human beings at all, and thought they should be trained like a lab rat or a misbehaving dog.

    We’ve known families that had it a lot worse than us. One family had a daughter who, when I first met her at around age 8, evoked the word “Asperger” in my mind. Unfortunately, the mental health professionals diagnosed her with just about everything else, and she suffered all the mistreatment that the mental health profession is capable of.

    So I can understand where the parents come from. Many have kids who are much more impaired than any I’ve known. The medical professionals have in most cases not helped at all. They’re desperate. And people like the AutismOne people are peddling hope.

    It’s just too bad that it’s false hope, with a certain amount of exploitation thrown in.

    • Avatar of punchdrunk

      “Frankly, most didn’t seem to see ASD people as human beings at all, and thought they should be trained like a lab rat or a misbehaving dog.”

      This is part of defining people by their diagnosis. The entire rest of our existence disappears, or only exists in relation to our diagnosis. It’s psychologically brutal.

      I wish there were more supports and therapies available to help parents and families cope. Autistic kids become autistic adults, and families that feel burdened can do real harm to themselves and the loved ones they’re caring for.

      • Avatar of amm1

        This is part of defining people by their diagnosis. The entire rest of our existence disappears, or only exists in relation to our diagnosis. It’s psychologically brutal.

        I guess I tend to see it more as a case of the attitude that “different” is equivalent to “non-human” or incapable of feeling anything. Sort of the way Europeans tended to see (sub-Saharan) Africans as non-sentient animals a century or two ago. Which makes treating them like lab rats OK.

        FWIW, my own limited experience with ASD people is that they feel plenty, but they may not always understand what they’re feeling, or — to put what I’m trying to say in a different way — may not be able to express their feelings in ways that NeuroTypicals (NTs) can understand. BTW, this is something NT children also have to learn, it’s not innate in anyone, but NTs may require less explicit teaching. I’ve learned a lot about NT processes from raising my ASD son.

        • Avatar of punchdrunk

          Yes, I’m an autistic parent of an autistic child. This is intensely personal to me.

    • Avatar of katiehov

      yes, we were definitely feeling for the parents, most of whom looked tired. there were a few kids there, and some were obviously getting over stimulated and not having too good of a time. i can totally understand why they’d want to try something, anything, and how they’d look for any sign that their money is being well-spent.

      jenny had some story about evan laughing at an “abstract” joke on spongebob and that this was evidence that some treatment was working.

      so yes, we tried to have empathy, though some people, like the one who was cheering for brian deer to be lynched, made it difficult at times!

  18. Avatar of lizditz

    Ashley and Katie, thank you so much for (a) going to A1 (b) reporting so fairly.

    I tried to find some parental reports on blogs. Other than the deceptively named “Thinking Mom’s Revolution” blog, not much.

    For those of you who are autistic, or are the parents of autistic children, I’d like to remind you about The Thinking Person’s Guide to Autism (the book and the blog).

    for those of you fitting neither of the previous categories, it needs to be said that not all — in fact, very few– autism parents are in the A1, “autism is vaccine injury” camp. Even parents of children with intense autism reject the vaccine-injury meme.

  19. Avatar of Jesse

    That even poster is terrible, but strangely poetic. They’re reaching out for the sun, but they’re going blind and they’re getting burned.

    These people just scare me.

    • Avatar of victoriadashtwenty

      Staring directly at the sun does not make you go blind. We also know that staring at the sun is not an acceptable replacement for eating. Woo is mother nature’s response to the meddling of scientific ethics review boards.

  20. Avatar of thatchick

    Thank you for writing this. I needed to read it. I’m a recent deconvert, a new skeptic, and I have a son with autism. I’ve been studiously avoiding looking at the pseudoscience that I bought into regarding his treatment, but I know that there are some things I have to change. Thanks for the kick in the pants.

  21. Avatar of Madfishmonger

    I have a couple of friends with autistic children, and they (thankfully) haven’t submitted to any of this nonsense. One friend has had her formerly non-verbal, totally disconnected violent child tell her she loves her, start playing with other children and learn to calm herself. She did this through hard work, dedication and never, ever stopping. She brought her daughter to speech therapy and kept up on all her doctor’s recommendations. She’ll never be “cured” of her autism, but she’s functional and for her mother, just hearing the words “I love you mommy” mean the world.

    While I can empathize with a parent wanting a child to be “normal”, you kids are the way they are. To me, this constant desperate seeking for a cure is one of the worst parts. It’s like telling the child they’re not good enough the way they are. I see a difference between wanting to make a child’s life as comfortable and functional as possible (as my friend has done, and as I do at my new job), but doing so with the understanding that autism or other developmental disabilities provide a sort of plateau where there are just going to be some things they’ll never do. And that’s okay. Just as every child isn’t going to be an Olympic runner or neurosurgeon or firefighter because it’s just not suited to them. It just seems to be that people like Jenny McCarthy have this attitude that their kids aren’t “right”, they’re not the way they’re “supposed” to be and they’ll do damned near anything to make them fit this mental ideal.

  22. Avatar of Lin Wessels

    My, my, my such important work you do here. “Infiltrating,” as you were, an autism conference which is open to the public and then giving the pretense to actually care about individuals with autism and those who actually do love and care for them just so you can write garbage and trash talk them. Wow! Kudos (cough!) to you! You are nothing short of amazing. And we are supposed to be unsettled and worried by the parents who attend and the speakers who put it all out there for the entire world to see? Um, yeah…….right. Got a life much?

    • Avatar of Jamie Bernstein

      Hi Lin,

      The AutismOne conference is not open to the public. They can and do reject applications to attend for people who disagree with any tenant of their faith. A friend of ours who has a nephew with autism wanted to go this year but her application to attend was revoked because the has the same last name as a blogger that has written criticisms similar to this post in the past.

      If they recognize anyone at the conference that they think might be there because they disagree with them or any of their presenters, they will remove them. In the past they have removed Chicago Tribune reporters and a blogger who was there on a press pass that he had applied for honestly, because they thought there might be a bad article written about AutismOne.

      Last year I went with a friend whose son has Autism. They recognized my friend as a Autism blogger that has criticized them in the past. Even though we had signed up and paid under our real names and were not causing any disruptions or even talking to anyone but each other, they called the police on us. Seriously. They called the police on us because they knew we probably disagreed with them. Remember, we were not causing any problems or speaking to anyone and were there honestly, but they called the police on us anyways and told the police we were trespassing.

      You can read the story here: http://skepchick.org/2011/05/autism-one-conference-skeptics-will-be-prosecuted-to-the-fullest-extent-of-the-law/

      Going to AutismOne when you disagree with many of their main principles really is an exercise in infiltration. You have to keep your head down, not talk to anyone (or talk to loudly to each other), avoid eye contact with the event organizers, and hope no one recognizes you. You need to carry proof you are a signed up and paid attendee in case they try to get you arrested.

      If you really think anyone can just waltz into AutismOne regardless of beliefs, you’re completely wrong. They go through extensive measures to make sure that the AutismOne conference is a bubble of belief where all heretics are persecuted.

    • Avatar of Elyse

      Yikes… have you had that cough checked out? It could be pertussis.

  23. Avatar of michellemybelle

    So, let me get this straight: someone who has absolutely nothing to do with the autism community felt it necessary to ‘infiltrate’ this conference? Perfect!

    I’m sure everyone commenting on this understands autism. You’ve probably all had to clean smeared shit off the walls, seen your child slam their head into the wall because they cannot communicate their most basic needs, and quite frankly been beaten to hell because their child is melting down.

    Until you live it you will not understand. Period, the end. Don’t try to justify it because you just make yourself appear more ignorant.

    I’m a parent. I’m the single mother of a 4 1/2 year old child was diagnosed with severe, low-functioning, non-verbal autism at age 2. What does this mean to those of you with ‘normal’ kids? This means the first time my son rode the bus to school it was on the short bus to Special Ed. It means that he didn’t say ‘momma’ until he was more than 3 years old. It means I had to explain to CPS why he had bruises up and down his arms (he self harmed and would bite himself).

    I went to A1 for the first time in 2011. I went with an open mind; I heard that these people were crazy, but to hell with it…maybe I could learn something. I learned things that would change both of our lives. I met friends who are open minded and supportive. When I came home I changed my son’s diet and within two weeks he was speaking in three word phrases. Let me reiterate this for you: he went from having the clinically diagnosed speech/commucation abilities of a 9 month old infant to speaking relevant three word phrases.

    To a parent of a child with autism, this changed our entire world. To his SLP, this was ground breaking.

    Don’t get me wrong, not every treatment/intervention is right for my son or our family, but there are common sense things that do help. He has gut/intestinal issues, he has since infancy. Changing his diet has helped (not cured) his gut issues. He uses basic supplements that aid in digestion and that are readily available in most stores.

    Before you start talking about how crazy and insane we are, take things at face value. We’re intelligent people who don’t play with our childrens’ health. We research things more than you realize. There were things at at Autism One this year that I will not utilize with my son.

    Instead of bashing us why not support us?

    That makes too much sense. It’s easier to hate what we do not understand.

    • Avatar of Smashley

      I think we’re both coming from the same angle. Nowhere in this post did we call the parents at this conference crazy. In fact, I did say

      …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.

      We’re bashing no one. The fact that you said you do research, and that there were things at A1 that you will not utilize with your son, is exactly what I hope for. We infiltrated the conference not to make fun of people who believe strange things — we went to see what kinds of therapies were being targeted to parents in your position so as to 1) figure out if they were legit 2) find a way to let parents like you know why the BS ones aren’t legit.

      I could never imagine what it’s like to have a child with autism, and I respect what you’ve been through. The hell you’ve experienced is exactly the reason so many parents are easily preyed upon by peddlers of quack medicine — you want a cure for your child, and you’ll stop at nothing to get it. I get that. We just want to help parents find the RIGHT ways to do that.

    • Avatar of Janet Edghill

      Amen, sister! My son, also 4 and a half, went from horrible, nasty chronic diarrhea and the accompanying stomach aches to finally having a normal gut function–using those crazy supplements–enzymes and probiotics. The notion people think I’m harming my son or buy into snake oil for him is simply ludicrous. He also has allergies across all 8 major food groups–I seem to remember a snarky comment about allergy in the post–and he has allergies to nearly 100 foods. Yes, real allergies.

  24. Avatar of Janet Edghill

    Aloha, from Hawaii, Ashley–I enjoyed your piece, even if it was unbelievably one-sided. I doubt you have ever experienced autism first-hand, or you would know it is, in fact, a medical condition–replete with seizures, allergies, auto-immune disorders, and horrific gut issues…I’ve no doubt left things out. The thing about autism is that the mainstream medical community is simply not interested in learning HOW to treat autism. The fact that you refer to biomedical treatments as “quack medicine” tells me you know little to nothing about the severe deficiencies these children suffer from. If you are so inclined, I would be happy to send you studies printed in peer-reviewed medical journals that demonstrate many of the topics you probably heard discussed at the conference (which I did not attend). If you are really interested in learning about autism and not just pitying those of us with autistic kids, I’d be happy to educate you. And FYI–a few years ago, I felt the exact same way as you, but then was lucky enough to find a handful of specialists who taught me about this highly complex condition…if you have doubts that autism is a medical condition that is ignored by mainstream medicine, watch this link: http://www.youtube.com/watch?v=wa4wDqyfIqY It’s only about 3 minutes long.

    Mahalo for your interest in autism…Janet

    • Avatar of rinchan

      Wow you just assumed that everyone here has no experience with autism? I work with children every day with autism and we DO treat children using various therapies and many show tremendous progress. I also have two nephews with borderline autism and severe low functioning autism. They have both made progress with occupational therapy. I also have Aspergers and I have been hurt by supplements, and other alternative therapies that my mother tried to use on me to treat the condition. I never found anything wrong with me so I never understood why she subjected me to all those horrible treatments.

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