Jamie Bernstein, my bad ass ninja friend and VP/Skeptical Ninja of the Women Thinking Free Foundation, attended the Autism One conference this weekend. She went in hoping to gain information on what the anti-vaccine movement is up to, excitedly/dreading talks from Andrew Wakefield and Jenny McCarthy… she went out at the hands of three security guards and four police officers. And she was kind enough to blog it for all of us… it’s not only an amazing story, but it’s also the very first Skepchick-Friendly Atheist Blog Crossover Event!

Autism One, Part One
By Jamie Bernstein


When I learned that AutismOne, an organization that subscribes heavily to the belief that vaccines are a cause of autism, had its annual conference every year in the Chicago suburbs, I knew I had to go. Although the conference is about autism, it also tends to have a focus on vaccines and brings in many of the top names in the anti-vaccine movement. As Vice President of the Women Thinking Free Foundation, I often do pro-immunization advocacy work with our Hug Me! I’m Vaccinated! campaign, so gaining a better understanding of the anti-vaccine movement is always helpful.

I paid and registered three months prior to the event under my real name. It was approved with no problem. As the day grew closer, I began talking with my friend Ken Reibel over email and we agreed to go together. He has a son with autism, writes for Autism News Beat, and was interviewed on the Penn & Teller: Bullshit! episode about vaccines.

Even when we got to the event, there was no problem getting our registration packets and badges. I had heard that AutismOne had a history of kicking out reporters and other pro-vaccine advocates — rumor had it they ejected a Chicago Tribune reporter only a day before — but I figured if I stayed under the radar, I’d be fine. I wasn’t planning to do anything that would bring attention to myself. It was their event, after all, and I wanted to be respectful of that.

Ken and I spent the first hour or so walking through each of the exhibition rooms, which was basically like a giant woo-Autism trade-show with booths selling strange autism therapies, homeopathy, gluten-free snacks and make-up (because there’s a widespread, unproven belief that using gluten-free products will cure autism), and even “magic” berries. Around 11:00a, Ken and I entered the main ballroom to hear some talks.

The first speaker was Andrew Wakefield, of unethical, science-fraud fame. He got a standing ovation from the 1500 or so audience members before he even began to speak. His talk was on the Arizona Five. If you haven’t heard of them… you’re not alone. But Wakefield and AutismOne seem to be the only ones who think the story is important.

According to Wakefield, there is a family in Arizona where the parents believe all five of their children have autism. They have taken their children to many doctors who have subjected them to a variety of tests. The doctors concluded that there is nothing wrong with the children and that the parents either made the whole autism story up or may have Münchausen syndrome by proxy, meaning that they have a psychiatric issue that causes them to believe their children have autism when they don’t. Because subjecting children to medical testing for a disease for which there is no evidence is dangerous, these children have all been taken from their parents and put into foster care until it can be determined it is safe for them to return to their family. Wakefield said this is a conspiracy (a word he used multiple times) because, supposedly, there is a way for doctors to make money by taking children away from their parents and putting them in foster care.

Of course, getting this story from Wakefield’s talk was difficult as it was convoluted and filled with technical, medical jargon. It seemed written more for an audience of physicians than a room full of parents.

Once Wakefield was done, it was time for lunch, which consisted of all gluten-free, allergen-free, everything-that-tastes-good-free pizza, chicken strips, and ice cream. Even the ice cream managed to taste like cardboard and the pizza was downright inedible.

Finally, it was time for the Keynote Speaker: Jenny McCarthy. Like Wakefield, she received a standing ovation before she even began her talk. Jenny started out great. She’s a compelling speaker and started with a cute, adorable, touching story about how her autistic son Evan likes to ride escalators, so she takes him to the mall often just to ride the escalator up and down. She also talked about her frustration with having an autistic son and how she has learned to accept it.

Less than 10 minutes into her speech, she turned the mic over to Byron Katie, a self-help guru that promotes a program she calls “The Work.” Byron Katie asked the audience members to fill out a worksheet in which they had to describe someone they’re angry or frustrated with. She then called select audience members on stage to read their answers and would respond by turning their statements back on them.

Here are some actual examples from the conference (note: since audio-recordings were not allowed and I couldn’t write fast enough, it is paraphrased):

Parent: I’m angry with my husband because he does not accept me as a whole package.
Katie: Does your husband not accept you, or do you not accept your husband?

Parent: I’m frustrated with my son because he always puts himself down.
Katie: Does he always put himself down or do you always put him down?

Parent: I’m angry with the pharmaceutical companies for hurting my son.
Katie: Did the pharmaceutical companies hurt your son or did you hurt my son?

She would then force them to repeat the opposite of their original statement.

  • “I don’t accept my husband as a whole package.”
  • “I always put my son down.”
  • “I hurt my son.”

Seriously. She forced people to say these things and then told them they had to change their thoughts accordingly. Her whole point was that any time you are angry or frustrated at someone/something else, you actually caused those things to happen because of your thoughts. Therefore you can’t change it without taking responsibility. It’s basically a blame-the-victim mentality — If anything bad happens to you, it’s your fault.

I took some time during Byron’s presentation to fill out my version of the worksheet (click to enlarge).

Once Byron Katie was finished, Jenny McCarthy came back out to thank her. Then, instead of giving her own talk, which I was expecting since she was keynote speaker, she left the stage and played a video of herself talking about her journey with the autism community.

Let me repeat that. She played a video of her talk instead of actually giving it, even though she was there as the keynote speaker.

TO BE CONTINUED (now)… at Friendly Atheist

I’d like to say that I am super proud of Jamie for having the courage to attend this event, and for her composure and grace under fire. I am honored than I can call Jamie and Ken my friends. Thank you, both of you, for doing the work you do, and for taking the risks you take.

Elyse

Elyse

Elyse MoFo Anders is the bad ass behind forming the Women Thinking, inc and the superhero who launched the Hug Me! I'm Vaccinated campaign as well as podcaster emeritus, writer, slacktivist extraordinaire, cancer survivor and sometimes runs marathons for charity. You probably think she's awesome so you follow her on twitter.

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23 Comments

  1. Avatar of krelnik
    May 30, 2011 at 9:49 am —

    Has anyone been able to find any solid information on this Wakefield claim about the Arizona family? The only substantial actual info on what happened is this video in which Wakefield interviews family members:

    http://autismfile.com/the-arizona-5-interview-special/

    The town in Arizona is not identified. The only family member interviewed is the aunt of the children, and she faces away from the camera. (The other interviewee is an autism activist who has met the family, she also faces away from the camera).

    My question: if these kids were taken away from the family and put in foster care, would there not be a public record of this? Have they not sued to get their kids back? There would be a public record of this. I can’t find any of this.

    All I can find are autism sites repeating the same claims from the same handful of posts about this at autismfile and age of autism.

    I’m wondering if this family actually exists. If they do in fact exist, I wonder if they might be selling Wakefield a bill of goods about their story, which he is now reselling to the rest of the autism crowd.

    Can anyone find anything more on this? I’d love to know some facts of the case that haven’t been filtered through Wakefield.

    • Avatar of lizditz
      May 30, 2011 at 11:48 am —

      Krelnick several people, myself included, went looking for evidence of the “Arizona 5″ family at the time AutFile was doing a fundraiser (I think it was last fall).

      No news reports, the Arizona Child Protection Services Department wouldn’t comment, and …. the fundraiser fizzled.

      My working hypothesis is that there is a family of 5 children who have been placed in foster care, but instead of being heroic figures, Mom & Dad are too obviously mentally unbalanced to make great Martyrs for the Cause. Not necessarily MBP, but not acting in the children’s best interest.

    • Avatar of dmbeaster
      June 11, 2011 at 12:19 pm —

      Child custody cases are usually confidential. I do not know the practice in Arizona, but they are not public unless the persons in the proceeding waive confidentiality.

  2. Avatar of Dalek Lama
    May 30, 2011 at 10:02 am —

    Thanks Jamie! Great report. I’m off to Hemant site for the rest.
    But has anyone else noticed the pareidolia in Jamie’s lunch? It’s Pedobear!

    • Avatar of Buzz Parsec
      May 30, 2011 at 10:25 am —

      Actually, I thought it was a teddy bear first, and it took me a while to figure out it was actually a piece of pizza. Still not sure about the lower part (legs of the bear.) Maybe some deep-fried chicken nuggets?

      • Avatar of weatherwax
        May 30, 2011 at 7:32 pm —

        This may well be the most horrible part of the whole story, but I suspect that’s the ice cream.

  3. Avatar of Dalek Lama
    May 30, 2011 at 10:55 am —

    And how lame is it that Byron Katie is ripping off The Secret to make money. Shameless. And people buy into it.
    I was going to link to the Simpsons’ parody of The Secret, but then I found this HuffPo article and I thought, “This is WAY funnier then the Simpsons!”
    http://www.huffingtonpost.com/2009/10/05/the-simpsons-mock-the-sec_n_309240.html

  4. Avatar of thememe
    May 30, 2011 at 10:59 am —

    In my experience there is often some truth to the ‘psychological-projection’-thingie (especially when it comes to personal relationships). But the way Byron Katie applies it here, does’nt seem to very constructive and may only lead to self-blame.
    As got it from her website, The Work just seems to be a watered-down, perverted and misapplied CBT-style-’therapy’, that can be very damaging to people. (Nonetheless it seems to be very popular, especially in the New Age-Subculture)

  5. Avatar of scribe999
    May 30, 2011 at 11:26 am —

    What, does appetizing-looking food cause autism now too?

  6. Avatar of Amy Roth
    May 30, 2011 at 1:06 pm —

    I would like to personally invite any and all of the anti-vaccination proponents to any upcoming skeptical events. We won’t kick you out and we will happily explain science, medicine and critical thinking to you. Join us.

    Facts are not something that need to be hidden. Lies are.

    Thanks for reporting on your experience, Jamie.

  7. Avatar of tmac57
    May 30, 2011 at 1:51 pm —

    Can you imagine anything remotely resembling this incident happening at a Skeptics event? Also antivaxers are notorious for banning dissenting or skeptical comments from their blogs.These people are indeed intellectually dishonest and show that they have something to hide.

  8. Avatar of DrJen
    May 30, 2011 at 2:01 pm —

    And, to be clear about the headline “prosecuted to fullest extent of the law” at this point means their registrations were refunded/rescinded and being given what must be a trespassing warning for the future: that if they come back (after having been ejected), they will be arrested for trespassing…because they didn’t do ANYTHING illegal. If the AutismOne folks try to say that they were trespassing prior to being asked/made to leave, it sounds like they’d be on extremely shaky ground.

    Sorry you didn’t get to see more of the conference, Jamie.

  9. Avatar of punchdrunk
    May 30, 2011 at 7:31 pm —

    This point bears repeating over and over again – you know who you won’t see speaking about autism on these groups’ websites or at their conferences?
    People living with autism. We’re a pawn, voiceless and faceless unless a parent wants to trot out a child who is too young or profoundly affected to speak for themselves.
    Some of these ‘therapies’ are torture – chelation? chemical castration? shock therapies?
    Paternalistic, condescending, bullying fanatics.

    • Avatar of lizditz
      May 30, 2011 at 8:01 pm —

      While I agree that the primary thrust of the AO con was “your child with autism is broken/defective/sick, and there are magic cures that will give you back the perfect child you deserve” — there were at least two adults with autism who gave presentations, Stephen Shore and Brian R. King.

  10. Avatar of BeardofPants
    May 30, 2011 at 7:43 pm —

    You can add anti-vaxers to the list of people I heartily wish would fall off the planet.

  11. Avatar of BonnieBeth
    May 30, 2011 at 8:24 pm —

    Wait, it’s seriously called the “Judge Your Neighbor Worksheet”? And each page is headed “The Work of Byron Katie”?

    Wow. I just… I mean… whatisthisIdonteven

  12. Avatar of Kaa
    June 4, 2011 at 11:50 pm —

    Has AutOne responded to this story anywhere, yet? I’m curious what their media stance would be on this.

  13. Avatar of glowbrain
    June 6, 2011 at 10:03 pm —

    Bad food. Brainwashed people. Bad research presentations. It sounds like you just escaped from Hell. Except the really terrible thing is while Hell isn’t real, this convention certainly was.

  14. Avatar of PlanetaryGear
    June 10, 2011 at 4:36 pm —

    just FYI, my almost completely non-austic son loves to ride the escalators up and down too ;)

  15. Avatar of melodyjane
    June 10, 2011 at 5:36 pm —

    I know this is going to seem like shameless self promotion, but this issue is SO completely frustrating to me. I wrote an article on *actual* research being done to find the cause of Autism, by actual accredited researchers. The most frustrating thing is that this kind of research is making great strides in the identification of a cause and will do more good in finding treatments, and provide more hope than science denial ever has. It is so important to keep up the fight for reason, here is my little contribution if you’re interested; but even if not, know that there are those of us trying to spread facts as well. Perhaps there will be enough of us to drown out the other rhetoric and get these parents and patients hope grounded in reality and not fantasy.

    http://faithlessfeminist.blogspot.com/2011/03/neuron-discovery-possible-new-link-in.html

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