Autism News Beat

An evidence-based resource for journalists

Autism News Beat header image 2

Expelled 2.0

May 29th, 2011 · 54 Comments · Miseducation, Serious overreach

 

After sitting through two very boring presentations at this year’s Autism One conference, it was apparent to my colleague and I that writing about the annual anti-vaccine trade fair would be a challenge bordering on pointlessness. What could we say that hasn’t been said before?

An hour later we were standing in the lobby of the Westin Lombard, surrounded  by four policeman, three hotel security guards, and a growing crowd of curious parents. And then were kicked out, for no serious reason. For me, it was deja vu all over again.

We arrived in Lombard, a Chicago suburb of 42,000, at 10 am, after a 30 minute drive from Hyde Park. That’s where my friend and colleague, Jamie Bernstein lives. She’s a graduate student at the University of Chicago and VP of Women Thinking Free, and blogs at Hug Me I’m Vaccinated. This was Jamie’s first AutOne conference, and she wasn’t sure what to expect.

We walked down narrow hallways packed with exhibitor tables before heading to the Grand Ballroom for the disgraced UK gastroenterologist Andrew Wakefield’s 10 am talk on Münchausen Syndrome by Proxy. When he walked to the podium, the magical sparks from his boyish grin, amplified by two giant flat screens, convinced 1,000 grateful parents to leap to their feet and applaud the man whose fraudulent 1998 Lancet article resuscitated the modern anti-vaccine movement. Wakers, as he is known, spent the next hour sharing the sad tale of corrupt doctors, clueless social workers, and the brave parents of five autistic children in a case Wakefield calls “The Arizona 5.” The story first surfaced last fall, when Wakefield promised a giant December rally to focus the nation’s attention on the anti-vaccine movement’s “Rosa Park’s moment.” The rally fizzled,  Rosa’s bus route stopped short of Crazy Town, and the Arizona 5 slipped down the memory hole.

Chicken Tenders, Pizza, and ThinQ® Energy Drink still life by Jamie Bernstein

While Wakefield spoke, the efficient and polite Westin staff set up folding tables with white linen and gleaming metal trays of chicken strips and pizza, with a frozen dessert treat, coconut milk and a fruity energy drink in a solid metal container that could safely store nuclear waste.  The chicken strips had a faint, chemical aftertaste that reminded me of novocaine, and my fudgesicle tasted like wheat germ. But the coconut milk, served in a juicebox, was delicious. So far, lunch was the big story. I started to look at my watch.

Jenny hit her mark at 11:45, all curls and smiles. She told a touching story about Evan’s love of escalators,  and long hours spent at the local mall, just your average single mom and her special needs child. Then she introduced her friend and spiritual guru Katie Byron, a silver-hair matron with a penchant for long pauses and thousand-yard stares which she used to great effect as she plumbed our deepest fears. She started by walking her audience through a questionnaire that read like a Mad Lib for the terminally melancholy. Examples:  I am ______  with _______ because _____________ .   I want _____ to _________ . She invited audience members to read their Mad Libs aloud while McCarthy held a mic, Phil Donohue style, which made me think Byron was auditioning for her own Oprah Network talk show. My suspicion was soon confirmed when Byron invited an audience member to sit with her on a generic talk show set – two comfortable chairs facing one another, every word streamed live on the internet. For two mind-numbing hours. This was McCarthy’s keynote address: a visit with her shrink, who isn’t a doctor but wants to play one on TV. The grand ballroom was emptying fast. When the session had mercifully ended, half the seats were vacated.

McCarthy made one more appearance to thank everyone for coming, and to introduce a familiar 20-minute video which homologously recombined into the movement’s tinikered DNA about three conferences ago. Jenny on Oprah, Jenny on Dr. Oz, Jenny on Good Morning America, Jenny leading her angry mob in another grand ballroom.

We decided it was time for a cup of coffee, and walked to a nearby Starbucks where Jamie and I talked about what we had seen. Jenny made no mention of vaccines, and one parent whose Mad Lib read “I am angry with the pharmaceutical companies because they hurt our children” was talked down from her ledge by Katie Byron. Was this Jenny’s way of distancing herself from the craziness? Did we just witness the first step of McCarthy’s 12-step career recovery process? Jamie was skeptical, but that comes with the territory when you are a Woman Thinking Free. Still, I saw no clear theme to this year’s conference. Just speculation and finger pointing, which I can’t do without paying royalties to Generation Rescue.

We finished our lattes and walked back to the Westin. It was raining, and we probably looked pathetic when we reached the lobby a few minutes later. I felt bored and anxious, more eager to get back home than to revisit the vendor tables. We were on time for a talk on “Cannabis and Autism”, but Jamie and I thought that was just too depressing. If we waited 90 minutes we could catch Mark Blaxill and Dan Olmsted talking about their anti-vaccine book which rocketed to number five million on the Amazon sales charts. Did we want to do that? The thought of killing time in the gauzy, bordello-themed Generation Rescue salon did not appeal to either of us.

As we entered the l0bby I saw two women staring at us with a look of low-grade panic on their faces. I knew right away we had been spotted. Obviously a “be on the lookout” had been issue for two heretics. The women quickly turned and walked to the registration desk, where an animated conversation ensued. The women looked at us, then looked quickly away.

“We been spotted,” I said to Jamie, as we continued to walk toward the exhibit areas at the back of the lobby. We stopped near a hyperbaric oxygen tank display. I wondered if it mattered to anyone that a recent paper co-authored by Wakefield found no benefit from HBO for the symptoms of autism. So little of what I had seen and heard made sense.

Then Jamie took her 35mm SLR digital camera out of her handbag and snapped a picture of an HBO poster. Seconds later the conference organizer, Teri Arranga, walked up to us. She was all business. “There is no photography allowed here,” she said. To prove her point, Teri sent a volunteer to bring back one of the many signs posted throughout the area that said “No video or audio recording allowed.”

Jamie pointed out, politely and correctly, that a 35mm camera which only takes still pictures is not a video or audio recorder. No problem: Arranga had a sign for that too, and sent her volunteer to fetch it. We were soon joined by two hotel security guards, then four uniformed Lombard police officers. The “no still cameras allowed sign” was never produced, but it didn’t matter. After much scurrying about and conferring with persons unseen, a visibly upset Arranga had made her decision – we had to go.

Why?

Arranga had an answer for that – the registration rules posted on the AutismOne website, which she read verbatim in a quavering voice.  First, Autism One had the right to deny registration to anyone for any reason. I had registered in March, paid my $25 with a credit care, and received confirmation via email. Jaime was also pre-registered, and had a name badge ready at the registration desk that morning. The second part said that the conference organizers could ask someone to leave if their conduct interfered with the other attendees.  “How is our conduct interfering,” I asked Arranga. She had no answer.

We were warned that if we returned we’d be charged with trespassing, then were led, Dead Man Walking style, to the front door. On the way out we passed David Geier, accused by the Maryland Board of Physicians of practicing medicine without a license. He was standing behind the ASD Centers table, expressionless. One day the police will come for him, I thought. But not today.

Share

Tags:

54 responses so far ↓

  • 1 Sharon // May 29, 2011 at 3:24 pm

    MY hats off to you both. I cannot understand the perspective of the organisers. If they genuinely believe the crap theyre peddling why would they care that you are there?
    Interesting point about Jenny not making references to Vaccines too.

  • 2 Jamie // May 29, 2011 at 3:46 pm

    Hug Me! is not exactly a blog, but close enough! It was fun hanging out with you yesterday, Ken, even if it got us kicked out! Adventure!!

  • 3 susie // May 29, 2011 at 4:43 pm

    I’m glad they kicked you out. Go spew your negativity somewhere else. Who wants you there anyway. Lie and let live . Reading this makes me so angry. It’s so disrespectful to the parents , speakers and organizers of this event. Why would you even go if you hate AO/GR so much? I haven’t read up on you, but DO YOU OR YOUR PARTNER have a kid with autism? Also, this was NOT any kind of freaky anti vax rally. It was people learning how to help their kids. And, in the movie Jenny made..she repeatedly said she was NOT anti vaccine. Glad you were kicked out..since it’s all about ELIMINATING toxins.
    For what it’s worth..this is just my 2nd year there. I have a child on the spectrum who was born that way and was and still is vaccinated. I was so happy to learn of this organization AND my son’s health has improved as a result of me attending this conference last year. There is so much more to it than Dr. Wakefield and Canibis, but if that’s what you FOOLS wish to focus on go ahead.

  • 4 jre // May 29, 2011 at 4:50 pm

    Well done!
    Two comments:

    If you have not yet noticed that your “Chicken Tenders, Pizza, and ThinQ® Energy Drink” appears to be an immunized bear looking for a hug, you need to get your pareidolia checked.

    At this year’s TAM, there will be a workshop on “Promoting and Defending Scientific Medicine.” I plan to be there because I need to learn some positive skills in this arena, and don’t think I yet possess the stunning and admirable guts you displayed by walking into the anti-vax lion’s den.

  • 5 Liz Ditz // May 29, 2011 at 4:57 pm

    Susie’s comment had an amusing typo:

    Lie and let live

    Yes, the presentations at AutismOne had a great deal of misrepresentation of fact.

    Susie, I feel pity for you if you cannot tell the difference between “hate” and honest objective evaluation of testable statements or assertions of falsehoods.

  • 6 susie // May 29, 2011 at 5:21 pm

    Oh..liz…you know what i mean..Live and Let live.

    Liz, No need to pity me. I just think it’s rude to attend this conference and create negativity.

    We are all there to find something positive. So , I meant LIVE and LET LIVE.

    I notice you only looked for the negative things..like a typo..and didn’t notice any of my positive statements about what I have gained from AO.

  • 7 Chris // May 29, 2011 at 5:41 pm

    susie, what specifically did you observe them doing that created “negativity”? Be specific.

  • 8 jre // May 29, 2011 at 5:44 pm

    My comment and Susie’s crossed in the mail, or I would have remarked on it. I’d pose the following questions to Susie or anyone with a similar viewpoint who’d like to answer:

    As you know, there are organizations that promote autism research but feel that the question of whether vaccines cause autism has been pretty well settled in the negative. If some well-known person with differing views — J.B. Handley, say — were to show up at a conference sponsored by such an organization and do nothing special, just be there and talk with people, would you expect him to be chucked out? If he were chucked out, would you be glad?

    If the pro- and the anti-vaccine community differ sharply, each in its tolerance of differing views within its own tent, does that suggest anything about how confident each community feels about the solidity of its case?

  • 9 Liz Ditz // May 29, 2011 at 5:55 pm

    Dear Susie,

    I am glad for you and for him that your child’s health and well-being have improved over the past two years. But I have a question for you: how do you know the changes are due to your attendance at AutismOne?

    I have another question for you: Mark Geier MD and his son are facing serious, well-substantiated charges of medical malpractice, practicing medicine wiothout a license, and other charges. Mark Geier’s medical privileges have been suspended in two states. Can you defend their appearance (presumably compensated by the organizers) and their continued promotion of the lupron protocol at AutismOne?

  • 10 Shannon // May 29, 2011 at 6:09 pm

    Classic cult behavior.
    http://www.orange-papers.org/orange-cult_q0.html#cq_personal_attacks

    Many of this year’s IMFAR attendees have disagreed with each other vociferously and publicly. Yes respect for the right to present, view, & discuss research and information was the rule. I suppose that rule doesn’t apply when indoctrination and its accompanying dollars are at risk.

    I will say that I was heartened to see many agenda-free and genuinely helpful sessions at Autism One, e.g., Stephen Shore, John Elder Robison, and Brian R. King.

  • 11 susie // May 29, 2011 at 6:30 pm

    jre- But why did these 2 attend? They didn’t attend to talk to people. Thy tweeted negatively and trashed it in blog posts. If they came and were respectful, then no problem.

    Liz- Thank you for the kind words and for asking for proof to back up my claims about AO/GR. I hope this won’t be too long of an explanation.
    I know b/c right after AO last year, we went to the pediatrician for a camp physical and the dr. noted that his growth chart had dropped down to the 2% percentile ( from 5%th). The dr. was going to have us get a bone scan. Since I had just learned about GF/CF and some of the biological issues ASD kids have. I asked the dr. to give us an order for food issue tests ( iGg) and glandular tests. He called me a few days later and told me his TTG numbers were off the charts, indicating the autoimmune disease..celiac disease. An upper endoscopy confirmed it. He’s off gluten for almost one year. I credit last years AO conf. for “guiding” me to that information. Yes, my Dr. would have mentioned it…AFTER the bone scan came back. I wanted to find out right away though and was able to b/c of what I learned at AO. I didn’t know he had celiac b/c his only symptoms were stunted growth..due to malabsorbtion b/c of the damaged small intestine. He’s always been smaller and is picky..so we didn’t notice the non growth. He has gotten stronger and healthier everyday. I also saw a great speaker there last year who is an incredible social worker. We have seen him weekly for the past year. Working with him has been the greatest therapy we’ve had yet. He works with us as a family and has helped us understand our son better and helped my son learn to advocate for himself and other positive milestones.
    Sorry to ramble, I just wanted to point out some of the positives in my AO/GR experience.

    To address the Geier question- I to admit that I am not up on their story, didn’t know they were @ the conference or about them. I was there the entire time..but missed them. I guess their talk wasn’t something of interest to me. I attended so many amazing talks like..”How to Succeed in the real world with an ASD”, “Exercise and Autism”, “Autism and the Law”, “Picky Eaters” ,” How parents can make a difference for their Child With Autism”,”Sensory Integration” “”Occupational Therapy” and yes..some on supplements , the digestive disorders and mitrocondrial issues…to name some. There were 150 speakers..so I didn’t catch them all.
    I guess we will agree or disagree.
    Liz and JRE- Thank you for not being confrontational. :)

  • 12 susie // May 29, 2011 at 6:38 pm

    I meant agree to disagree….pardon typos.
    Long week with all those anti vax rallies :) …kidding
    Chris- if not negative-why where they there?
    Shannon, YES! Great presenters! Brian was who I was referring to above! Saw Steven Shore there last year too! He was great.
    Shannon- I’m not up on IMFAR, were there parents there? Looking for ways to help their kids?

  • 13 Shannon // May 29, 2011 at 6:58 pm

    Susie, yes — I was one of those parents. My reports from IMFAR are here:

    http://thinkingautismguide.blogspot.com/search/label/IMFAR

    I especially enjoyed talking with Mary Beth Cull from Columbia’s Light on Literacy project, and her work on teaching reading to non-verbal kids. Amazing stuff.

  • 14 Chris // May 29, 2011 at 7:12 pm

    susie:

    Chris- if not negative-why where they there?

    To observe. Now please tell us exactly what they did that was disruptive. Did they shout at a presenter they disagreed with like someone did to one of the Mythbusters because he did not like their moon hoax presentation? Did they ask too many long questions that did not permit other people to ask questions?

  • 15 jre // May 29, 2011 at 8:01 pm

    Susie – I am pleased and a bit reassured that you do not feel I was not confrontational. Since I got this far, let me press the point.

    If (for example) J.B. Handley were to attend (for example) IMFAR, and behaved with exactly the same amount of respect or disrespect as Ken and Jamie did at this event, would you expect him to be ejected? And if he were ejected, would that, in your view, be OK?

  • 16 susie // May 29, 2011 at 8:13 pm

    Shannon- For the record, I support AS also. They’ve been outstanding in the area of awareness.
    Wow..that’s an amazing conference!!
    And I thought I had conflicts at AO! So many great topics. Thanks for the reports from conference. I see they have varied topics too…medical, science, education, therapies, etc. Hopefully the divide between all the organizations will get narrower.

    Chris- I didn’t say they were disruptive. I said, “why even go?” I see why tho..to come back to the blogosphere and talk about how bad it was.

    Ok..they are entitled to their opinion I guess. It just seems quite rude and disrespectful. We were just a bunch of concerned parents looking for ways to help our kids. Maybe some people @ AO feel stronger than others ( usually with GOOD reason), but who are we to judge.

    Sounds like noone is backing down. I will let you all be now. I just couldn’t stand by while this great conference was being misrepresented.

  • 17 Chris // May 29, 2011 at 8:23 pm

    It is good that you received a diagnosis of celiac for your son. It is a difficult thing to do, and I know one child who was not diagnosed until her teens (even though her mother also has celiac). (She is not autistic, though she did lug a cooler full of her food on marching band trips)

    By the way, I have attended and even given a talk at a conference specific to my son’s disability. There were the same kind of talks, so AutismOne is not unique in that regard. The big difference was there were no tables of people providing supplements, HBOT treatments, cranialsacral therapy, etc.

    Also, when one parent asked lots of questions about a treatment the Mayo Clinic therapist did not agree with, she was not asked to leave. Instead it was discussed, including the risks, benefits, evidence and costs.

    Susie, here is some information on the Geiers:
    http://neurodiversity.com/weblog/article/217/

    Apparently some of the parents complained, and at least one referring physician. The major problems were the diagnoses of something even when there was no reason indicated by the multiple and expensive tests. Plus they were giving children large doses of a drug that could have serious side effects (yes, it was toxic!).

    Why do you think Autism One does not want that kind of information shared?

  • 18 Liz Ditz // May 29, 2011 at 8:28 pm

    Dear Susie,

    I will amplify what I wrote at LeftBrain/RighBrain,
    since you are also commenting there:

    There are two distinct blogs:

    1. this one, Autism News Beat, (in the old time news phrase) owned and operated by Ken Reibel (the man who was ejected from AutismOne yesterday). and

    2. The other one, LeftBrain/RightBrain, (again, the old time news phrase) owned and operated by Kev Leitch. Kev Leitch is a UK resident and citizen; Sullivan is a US resident and citizen.

    To the best of my knowledge (which is considerable) there are no legal or financial ties between Kev Leitch, Sullivan, or Ken Reibel, or their blogs.

    On the other hand, I do know that Leitch, Sullivan and Reibel are at least pen-pals. How do I know that? Because I am pen pals with all the three aforenamed men.

  • 19 Chris // May 29, 2011 at 8:29 pm

    Susie:

    Chris- I didn’t say they were disruptive. I said, “why even go?” I see why tho..to come back to the blogosphere and talk about how bad it was.

    Actually the feeling we get from Autism One is that they have something to hide. If it is so great, then they should not have to worry about legitimate criticism.

  • 20 susie // May 29, 2011 at 8:34 pm

    JRE— Nope, unless (JB Handy) was trash talking the IMFAR organization..spying…tweeting rude remarks after attending two lectures…I’m sure the people in charge were aware of these ppl..who only saw this conf as an ANTIVAXCON event and didn’t want trouble. Since Shannon just filled me in on IMFAR ( although I remember AS and John Elder R. posting about it now) I don’t know the “climate there”. I know that this group is one of support and concern for our kids heath and future. I didn’t meet any QUACKS. And I didn’t meet one person who brought up my thoughts on vaccinating. So, JRE, I hope I answered that ok.
    There was just so much more to this than ANTIVAX. That was my point.

  • 21 Chris // May 29, 2011 at 8:47 pm

    Do you think it is okay to call out people who try to take advantage of parents with disabled children? If not, why?

    Many years ago on the listserv I participated due to my now adult son’s disability some folks signed on to get our email addresses. Sometimes they would send a message touting their special clinic, or in one instance sent everyone on the list a ad for their very special soap. Do you approve of those kinds of tactics? Would you have complained to the listserv moderator?

    If you saw something similar at Autism One, would you have complained?

    Now, please, read up on the Geiers (see link). Read what the parents who complained said about their experiences. Then come back and tell us if they are practicing caring medicine, especially the son who does not have a medical degree.

    They were at Autism One. Do you think that is a good thing or a bad thing?

  • 22 Chris // May 29, 2011 at 8:49 pm

    tweeting rude remarks after attending two lectures…

    Please link to the tweets that you consider rude.

  • 23 Chris // May 29, 2011 at 8:59 pm

    Are these the rude tweets (http://twitter.com/#!/UAJamie)?

    Oh dear god, Wakefield just got a standing ovation PRIOR to starting his talk.

    Wakefield’s entire speech seems to be a straw-man argument. Why am I not surprised?

    Now he’s showing really graphic medical pictures. He gave no warning and there are children in the audience.

    Wakefield’s talk is really convoluted and full of jargon. Not really sure what his point is.

    Now he’s using the word “conspiracy” in seriousness. Sigh….

    Bwahahahaha Wakefield is accusing OTHER doctors of “gross medical negligence” with no hint of irony.

    Apparently Jenny’s new thing is “the work,” some sort of weird new agey, touchy feely thing.

    Byron Katie just asked if anyone had questions about the worksheet. Tempted to ask if she has any evidence to support her theory

    You should watch now. The new lady is hilarious!

    This has turned into a giant self-help forum.

    This is the saddest thing about the movement. These parents are so distraught & they’re preyed upon by those who want their money.

    I know. It makes me angry when people say that these parents are “stupid” and therefore we can just dismiss them.

    Byron Katie’s point seems to be that if you are unhappy with something in your life, it’s all in your head.

    Mine is “I am angry with Jenny McCarthy b/c she convinces parents to not vaccinate, causing rises in infections and deaths”

    Katie Byron just asked a mother “How have you hurt your child?” Why would you ask something horrible like that????

  • 24 Matthew Cline // May 29, 2011 at 9:16 pm

    Spying? Was there something going on at the conference that people were trying to keep secret?

    “Nope, unless (JB Handy) was trash talking the IMFAR organization..spying…tweeting rude remarks after attending two lectures…”

    So, your point of view is that if you’re going to say rude things about a conference organizer and the speakers at a conference, then you shouldn’t go. What about if you read a book and say rude things about the author? Is that something which should be avoided too? Or is the difference being in the physical presence of the speakers?

  • 25 ERV // May 29, 2011 at 9:17 pm

    HA!

  • 26 susie // May 29, 2011 at 9:59 pm

    Okay..I am going to read up on the Geiers in a moment. Thank you for the link, Chris.
    Chris- as a parent of a child w/ special needs, you must understand my desire to explore every option to try to help my kid?
    Please don’t be offended if I don’t come back to reply to all of your comments and I’m not going to the other blog b/c I’ve said my piece and you’ve all said yours.
    Maybe I was a little harsh with my initial comment, but it struck a nerve.
    Like I said before, I got so much out of this conference both this year and last year. That isn’t saying that I follow & exalt the practices of every presenter there.
    I’m feeling really good about the knowledge I gained and would prefer to focus on that right now.
    So, again…let’s just agree to disagree .

  • 27 Lars // May 30, 2011 at 3:46 am

    I was thrown out Of Autism One last year. And I am a serious journalist producing a serious project on the subject there to learn. My ONLY crime was that I openly acknowledged my skeptical bias in support of vaccines to the conference organizers when I applied for permission to cover the event. They INVITED me under the stipulation that I NOT record it – so I didn’t – I just went with an open mind to hear the opinions expressed by all. And they threw me out just the same.

    Its true that the whole movement has been getting a lot of criticism. Its true that almost none of their science can survive even the simplest review process. Its true that many of its medical practitioners are under investigation for misrepresentation and mal-practice. And its true that it is part of a multi-billion dollar industry at least as willing to take advantage of its constituents as established health and insurance industries.

    That’s the truth openly reported in the press. So why are they so afraid to question their work?

    Established medicine constantly questions itself and invites questions from all parties – including the anti-vax movement. Then it enters into debate and research to address those questions and improve. No such process exists at Autism One.

    Its a poor position that can’t stand to be questioned.

    Admit that and you may be able to start from a practical place to find the positive in a conference that avoids science and public debate.

    There are hundreds of good programs to aid children and parents of children with autism – many more than are represented at Autism One. There are thousands of experts and experienced people with good advice and support – many more than are represented at Autism One.

    Autism One may make you feel better, but only in ignorance of the truth and better alternatives. And there are good things to be found at the conference but they are presented as equivalent alongside some of the worst things you can do.

    And one of the worst things you can do is buy into the “magic bullet” theory of autism which points to vaccines as the sole source of autism despite evidence mountains high that disproves it.

    It only makes sense if you deny all of the other, better explanations.

    That’s the only reason to throw people out of your conference based on their beliefs.

  • 28 ERV // May 30, 2011 at 7:15 am

    Maybe I was a little harsh with my initial comment, but it struck a nerve.

    No, by all means. Youre the parent of a disabled child. That means you have a license to be a jackass and insult people whenever someone ‘strikes a nerve’ in you, even though they actually did nothing ‘wrong’. And dont actually apologize for being a jackass either— make sure you add lots of qualifiers so everyone knows you 1) dont actually mean ‘Im sorry’ and 2) will insult other people again, for no reason, whenever you feel like it, especially when you are actually the person in the wrong.

    I mean its not like other people have feelings or anything. You keep on doing whatever you want.

    I didn’t meet any QUACKS.

    Im sure you dont think you did.

    Like I said before, I got so much out of this conference both this year and last year.

    Considering your behavior here, you have to consider the possibility that “you got so much” out of a conference like AutismOne because you are a self-righteous, arrogant jackass, and conferences like AutismOne fuel/confirm/justify your delusions. Other people who are not encumbered by your personal psychological and intellectual ‘quirks’ might find a conference like AutismOne ‘less useful’.

    You all are saints for actually responding to ‘susie’.

  • 29 autblog // May 30, 2011 at 8:07 am

    Susie is typical of the parents who are drawn to AutismOne and similar trade fairs. They are “safe places”, as the organizers themselves put it, for parents to ask questions. Unfortunately the answers are scripted, and usually wrong. That’s why it’s so important for the organizers to control the message.

  • 30 jre // May 30, 2011 at 9:02 am

    Still and all, I’m guardedly encouraged. The only people I (a) know well and (b) know to be opposed to vaccination are dearly loved family members with whom I have easy, open communication on every other subject. But on this topic, something goes haywire shortly into the conversation and we have to stop.
    Susie, at least, has been willing to stick with it. I guess I’d like to offer this, without hoping for a response (although one is welcome):

    Susie, you have obviously taken a good deal of comfort and encouragement from the community at Autism One. Anyone would value that, and a parent facing daily challenges will value it more than most. It’s a natural human reaction to defend our beliefs against all perceived attacks, but not all natural human reactions are always good or productive. When you feel that your beliefs are under attack, you may be better off taking a step back and seeing if there is something to be learned before counterattacking. A lot of reasonable people look at Autism One and see a closed community, fiercely resistant to any challenge to its core beliefs. There are plenty of gatherings where you would never, ever be thrown out simply for disagreeing, no matter what you tweeted. Any hope for progress in understanding autism lies with open organizations and open minds, not in a little army of true believers.

  • 31 chavisory // May 30, 2011 at 9:05 am

    Why even go, susie? Perhaps to see, understand, and publicize what the Autism One people are saying and promoting from a skeptical perspective. You know, like is supposed to be not just allowed but encouraged in a vibrant, literate democracy. I don’t understand how that’s disrespectful to parents, when actually, it’s done out of deepest concern for how autistic people are treated by both society and medicine.

    We understand your motivation to help your child. But it is NOT disrespectful to you for scientific fraud to be pointed out. It should ring your alarm bells about their intentions if Autism One can’t tolerate a skeptic in their midst.

  • 32 Liz Ditz // May 30, 2011 at 9:32 am

    Jamie Bernstein has filed two reports on her experience at AutismOne

    Skepchick (part I)

    a href=”http://skepchick.org/2011/05/autism-one-conference-skeptics-will-be-prosecuted-to-the-fullest-extent-of-the-law/>http://skepchick.org/2011/05/autism-one-conference-skeptics-will-be-prosecuted-to-the-fullest-extent-of-the-law/

    Friendly Atheist (Part II)

    http://friendlyatheist.com/2011/05/30/how-i-got-kicked-out-of-the-autismone-con-part-2/

  • 33 Booted out of AutismOne at Skeptical Science // May 30, 2011 at 9:47 am

    [...] Journalist Ken Reibel,  who has a son with autism, writes for Autism News Beat, and was interviewed on the Penn & Teller: Bullshit! episode about vaccines, writes about what happened on his blog here [...]

  • 34 Chris // May 30, 2011 at 10:25 am

    Susie:

    Chris- as a parent of a child w/ special needs, you must understand my desire to explore every option to try to help my kid?

    So did I. I took my son to more than one neurologist, several speech therapists and a psychologist. I went to multiple child development programs at the local Children’s Hospital (and used their parent’s resource library). I participated in many hours of IEP (Individual Education Program) meetings at his schools. (oh, I now need to make an appointment with his cardiologist)

    I was also proffered lots of less than helpful suggestions that I should wait see since their cousin’s nephew’s wife’s niece did not start talking until 3, 5, 7, 30 and they are just fine now. (by the way, Einstein was not a late talker, he was talking by the time he was 2.5 years old) I even got that kind of response from the librarian when I was searching for information.

    I checked out every book I could find. The one by Glenn Doman on how to fix my “brain damaged” baby was just a book long advertisement for his institute in Pennsylvania.

    I had people shove articles by Thomas Sowell at me, tell me that his seizures were caused by drinking milk (he was two days old), suggest cranialsacral therapy (which is just a homeopathic head massage), and on and on.

    The difference is that I was able to weigh the risks and the benefits. I also vetted out the medical care providers by asking about them. I did this because there was a local case of a speech therapist charging twice the typical fee and just having her college age daughter work with the kids (sound familiar?).

    There are many good places for parents of autism to find information. If you live near a university, check to see if they have programs (my younger son got language therapy through their speech therapist training program). Also see if there is a program like Baltimore’s Kennedy Krieger Institute, or on the other side of the continent: Autism Center. There should be plenty of good options in between (I bet there is a good program in Chicago!).

    I believe one way to see if some place is legitimate is that they don’t refuse entry to reporters, don’t shy away from criticism and are open to everyone. You might use that as a criteria for any other program you wish to use.

  • 35 Out of Autism « Cubik's Rube // May 30, 2011 at 11:02 am

    [...] more on this from Orac and Ken Reibel [...]

  • 36 Andrew // May 30, 2011 at 11:31 am

    susie – What do you have against the parents of autistic children? Do you make money off cheating them and resent the ones who catch on?
    If you really had a child on the spectrum, you wouldn’t hate the real parents so much.

  • 37 The 21st Floor » Blog Archive » Pseudo-scientists have pseudo-conference // May 30, 2011 at 12:01 pm

    [...] of what happened over on Skepchick (part one) and the Friendly Atheist (part two) and on the Autism News Beat blog. I would strongly encourage you to head over to these blogs and get the full low [...]

  • 38 Matt Carey // May 30, 2011 at 12:37 pm

    “If some well-known person with differing views — J.B. Handley, say — were to show up at a conference sponsored by such an organization and do nothing special, just be there and talk with people, would you expect him to be chucked out? ”

    Happened last year at IMFAR. A person critical of the conference attended and wrote about it for her blog. No big deal.

  • 39 Jamie // May 30, 2011 at 6:09 pm

    Dear Susie,

    I honestly really appreciate your comments. I responded to you on the LeftBrain/RightBrain post, but I’ll add a bit of clarification here.

    As to why I went to the AOCon, it is because I am Vice President of an organization in Chicago that runs a pro-immunization campaign. As you probably know, the immunization and autism issues tend to overlap quite a bit. I know that AO and GR do a lot more than just complain about vaccines. However, they happen to be two of the loudest groups against vaccinations. I want to understand this side a little more, so I thought going to the event and listening to speakers would help, even when I disagree with them.

    I know that AO and GR provide what is essentially a giant support group for parents with autism. That part of what they do is good and greatly needed. However, as others have mentioned, they also provide fallacious and sometimes downright dangerous information both on autism therapies that are harmful and provide no proven benefit (such as the Geiers’ Lupron therapy) and by scaring people away from vaccines even when there is no evidence to support a link.

    In my opinion, the downsides in terms of danger to autistic children and increases in infections and deaths from preventable diseases, far outweigh the benefits of the services that AO and GR offer.

    Even so, I went to the conference because I want to understand this better. I want to figure out how we can provide all the good stuff that AO and GR does without all the misinformation.

    I had been planning on attending some talks that I agreed with more, but unfortunately was removed from the conference before I could do so.

    As to trash talking AO and GR in the blogosphere, that mostly has come about due to being kicked out.

    Jamie

    P.S. If you live in Chicago, you are welcome to come to any of our events. We will treat you nicely and you are welcome to state your opinion on any topic, even if it disagrees with us. To find our events, check out the Women Thinking Free Foundation facebook group and the Chicago Skeptics facebook group. I’m serious when I say we would love to have you.

  • 40 Badly Shaved Monkey // May 31, 2011 at 12:49 am

    It looks to me, and is implicit in Jamie’s comment above, that Susie has been the victim of the classic “bait and switch” of the alternative medical world.

    It is unlikely that 100.0% of everything said and done at a conference like Autism One is actually fallacious and fraudulent. The problem is that the little nuggets of half-truth and semi-rational argument drags along in its train the full-spectrum of woo-nonsense. If someone like Susie is able to come away with a net benefit that is by luck not judgement and the organisation relies on the fact that many more are drawn into to the deep fantasy that which comprises a lot of campaigning around autism.

    The test is whether Susie can see how closely she has skirted the rabbit hole and move decisively away from it.

    So, Susie, do you see why rational people might have a problem with the messages given out by Autism One and the company it keeps?

  • 41 Chris // May 31, 2011 at 12:56 am

    note to myself: do not feel bad that you are using a boring ol’ one year old laptop and don’t have an iPhone. Plus that I still think my mobile phone is to use when I am away from home.

  • 42 Prometheus // May 31, 2011 at 11:47 am

    Susie comments in response to a question about being ejected from conferences:

    “Nope, unless (JB Handy) was trash talking the IMFAR organization..spying…tweeting rude remarks after attending two lectures…”

    “Trash talking”? Susie has apparently not been to any scientific or technical conferences before. In those conferences, people are continually “trash-talking” about hypotheses that they don’t feel are adequately supported by the data. In the case of “Autism One”, that would include just about everything apart from the speakers’ names and the clock.

    In my own field, there are people who hold…eccentric hypotheses about various things and they are expected to ask (and be asked) difficult and even confrontational questions. The people expressing doubt are not ejected from the conference because that it why conferences are held – to exchange different ideas and viewpoints.

    If only one viewpoint is allowed, there isn’t much chance for exchange, is there?

    “Tweeting rude remarks”? I don’t do Twitter, but I can only imagine that some of the people fiddling with their cell-phones and i-whatevers at conferences I have attended are Tweeting rude and disparaging comments about what the speakers are presenting. Again, they are not ejected from the conference, even if they fail to silence their cell-phones.

    “Spying”? This is the most amazing accusation of them all. How can someone be “spying” at a conference that is open to the public? From what I could see, you didn’t have to be a member of any group or society to get into the conference – just pay your money and come on in. How could anybody be “spying”?

    As I see it, the behavior of the “Autism One” organisers (who also “ejected” a reporter from the Chicago Tribune both this year and last) is all about “controlling the message”. They realise that their “message” can’t stand up to close (or even casual) scrutiny, so they must exclude anyone who might possibly point out that “the Emperor has no clothes”.

    This behavior is more characteristic of a cult or “secret society” than of a conference. In fact, if this were a Masonic lodge meeting, the emphasis on unity of thought and protecting “secrets” would make more sense.

    The folks who organise and present at “Autism One” like to claim that their positions are supported by science, but their behaviors suggest that even they don’t believe it.

    Prometheus

  • 43 WTFF Newsletter #3 — June 2011 « WTF Is Going On?! // Jun 4, 2011 at 11:36 am

    [...] Ken Reibel’s perspective — Expelled 2.0 [...]

  • 44 Venna // Jun 6, 2011 at 3:23 pm

    @susie – “I was so happy to learn of this organization AND my son’s health has improved as a result of me attending this conference last year.”

    So if I understand what you’re saying, all I have to do is attend one of these conferences and my son’s autism will diminish? Does it work like study by osmosis or do I need to bring him to absorb the ‘positive energies’ in the room? Honestly, all I’ve ever gotten from the anti-vax camp (yes, they are anti vax or they would tell people to continue to vaccinate rather then scaring people into believing vaccines cause autism) is negativity, hate and intolerance to any idea that is different from their own. They don’t accept truth and fact but want truth and fact to mold itself into their belief system. That isn’t how science works, you can’t force something to be real if it just isn’t.

    Another thing is, if you can read and have an average comprehension level, these people were there strictly to observe and gather information and weren’t even talking to anyone. They were ejected, forcibly by armed police just for being there. They didn’t create the negativity, it was thrust upon them by the intolerance of the anti-vax group.

  • 45 Venna // Jun 8, 2011 at 1:35 am

    Need some assistance if I can get it (anti-vaxers need not apply thank you). I’ve been attempting to find info online relating to the ‘actual’ studies of the unvaccinated Amish communities with autism and I’ve heard there was also a study with autism rates between vaxxed and unvaxed in the US (don’t know what it was done or by whom, W&N made mention of it on about autism forum late last week.) If anyone have links to these or knows about them to provide better search strings, Id appreciate it. This is strictly for my own education BTW ;D.

  • 46 Chris // Jun 8, 2011 at 10:40 am

    On the Amish, you can start here:
    http://www.clinicforspecialchildren.org/CSC/Research.html

    I know I have seen some papers on autism and genetics that had “Amish” in a table years ago, but when I put “amish autism genetics” in PubMed I only go two hits:

    Pediatr Neurol. 2009 Apr;40(4):310-3.
    Gene associated with seizures, autism, and hepatomegaly in an Amish girl.
    Jackman C, Horn ND, Molleston JP, Sokol DK.

    Clin Genet. 2011 Jun;79(6):501-6. doi: 10.1111/j.1399-0004.2011.01669.x. Epub 2011 Apr 7.
    Clinical variability of genetic isolates of Cohen syndrome.
    Douzgou S, Petersen M.

    As far as the study of unvax versus vax in the USA, the only one I know about is the Generation Rescue Phone Survey.

  • 47 Liz Ditz // Jun 9, 2011 at 5:53 pm

    Venna, the whole “The Amish don’t vaccinate and they don’t have autism” meme was made up out of whole cloth by Dan Olmsted and repeated and repeated….with fact-like details that cannot be validated.

    See

    http://autism.about.com/b/2008/04/23/do-the-amish-vaccinate-indeed-they-do-and-their-autism-rates-may-be-lower.htm

    http://autism-news-beat.com/archives/29

    http://autism-news-beat.com/archives/580

    As far as the Generation Rescue phone survey that Chris referred to, I direct you to the following blog posts:

    http://scienceblogs.com/insolence/2007/06/fun_with_phone_surveys.php

    http://autismnaturalvariation.blogspot.com/2007/09/simple-selection-bias-model-explains.html

    http://leftbrainrightbrain.co.uk/2007/06/generation-rescue-survey-results/

    http://photoninthedarkness.com/?p=99

    Hope this helps.

  • 48 Rusty Knutson // Jun 14, 2011 at 2:44 pm

    Not helpful at all. A need to be “right” and an unwillingness to look at ALL of the facts. Disappointing. Will not read the author again.

  • 49 Andrew // Jun 14, 2011 at 3:25 pm

    >Not helpful at all. A need to be “right” and an
    >unwillingness to look at ALL of the facts. >Disappointing. Will not read the author again.

    AutismOne is not an article; it’s a convention for frauds and their victims. I agree that it’s disappointing, though.

  • 50 Marsha // Jul 1, 2011 at 4:39 pm

    LOL. Susie did great & the duped & those who work to dupedthem ganged up or her but still, Susie & truth came shining through. Go at it you poor sad excuses for human beings all you want. You fool no one any more & awareness spreads like a good virus. Truth is & will win out no matter how many of you spin the web of deception. Thanks, Susie

  • 51 Andrew // Jul 1, 2011 at 6:49 pm

    Marsha – here is a small hint. One group lets susie post here freely – one group expels anyone who disagrees with them. Which group sounds more like they are duping people? Which group is more afraid of the truth? Which group should be ashamed of themselves?

  • 52 autblog // Jul 2, 2011 at 5:46 am

    Which group is shameless?

  • 53 Prometheus // Jul 5, 2011 at 7:59 am

    Marsha (#49):

    “Truth is & [sic] will win out no matter how many of you spin the web of deception.”

    I guess I’m still wondering how ejecting people (including reporters from the Chicago Tribune) who aren’t making a fuss or disrupting the “meeting” (revival?) is protecting the “truth”.

    It seems more likely that the organisers of AutismOne were concerned that these “unbelievers” would spread their contagion to the faithful. Otherwise, why not let them stay and be “enlightened”?

    I suspect that even the organisers of AutismOne have serious doubts about the “truth” being sold at their conference. Why else would they so zealously protect is from scrutiny by unfriendly eyes?

    Yes, Marsha, “the truth will win out” – but I doubt that it will be the “truth” you are expecting.

    Prometheus

  • 54 Why does Jenny McCarthy need Miss Montana? | Left Brain Right Brain // May 16, 2013 at 8:12 am

    [...] publicly commented on vaccines in four years (it was more like two years, but oh well). Her 2011 AutismOne keynote address barely mentioned vaccines. In her 2012 speech, she was introduced by a [...]

Leave a Comment