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Listening to parents at AutismOne

May 29th, 2010 · 14 Comments · Serious overreach


The anti-vaccine movement frequently complains that the medical establishment doesn’t spend enough time listening to parents. Sometimes the news and entertainment media take the bait.

“It is impossible to overlook the larger and direct dangers inherent in (Jenny McCarthy’s) position on vaccines,” wrote Karl Taro Greenfeld in Time Magazine last winter. “Yet it is equally difficult to ignore the emotional core of what she is saying: Listen to parents. If doctors won’t, then McCarthy will.”



14 responses so far ↓

  • 1 Mike Stanton // May 30, 2010 at 1:45 am

    They are displaying a siege mentality as well they might. First the Omnibus decisions, now Wakefield at the GMC, and a media that is finally asking questions of them rather than uncritically “listening to the parents.”

  • 2 KWombles // May 30, 2010 at 5:17 am

    It makes the AoA’s refusal to allow contrary opinions on their site look open-minded; they’ve not closed the site to only vetted and approved eyes (that would no doubt hurt their revenue).

    It does seem clear, though, that if you can in any way be identified as anything other than a gullible, in-full-compliance-with-the-vaccine-theory parent that you won’t be welcome at Autism One.

  • 3 Broken Link // May 30, 2010 at 6:32 am

    ANB, there’s something totally ironic at AoA today, entitled “Katie Wright: And Autism Mom Goes to IMFAR”. Of course, her main theme is how IMFAR and the researchers are not listening to parents. But she also describes what she sees as the difference between conferences such as AutismOne and IMFAR.

    Here’s what she says about a DAN! conference:

    When a lecture ends at a DAN! Conference it is a free for all to the microphone. One hears the sounds of chairs being overturned, feet getting accidentally stepped on, bustling pads of papers filled with questions being extricated from folders and so on. After a sometimes exhaustive Q & A period the lecturer is inevitably followed out of the room by a dozen people wanting more information. I always thought that is how it should be! People are incredibly engaged and have many questions to ask. There is no sparing of feelings and that is OK, believe me these parents and presenters are tough, they can dish it out and take it as well.

    And here’s what she says happens at IMFAR:

    When a lecture ended at IMFAR only a couple of people walked to the microphone. The questions were gentle and complimentary. So try to imagine what happened when Lyn Redwood and I took to the mic after the Susan Hyman presentation to ask some not so gentle and not complimentary questions. More on that later.

    See, Katie, that’s the difference between civility, respect, openness and eagerness to learn on one part, and a mob reaction to being whipped up in an echo chamber, where true dissent is not allowed.

  • 4 codeman38 // May 30, 2010 at 9:08 am

    @Broken Link: Personally, it strikes me how much more autistic-friendly AoA’s description of IMFAR is compared to DAN!…

  • 5 Liz Ditz // May 30, 2010 at 10:06 am

    It seems to me that the AutismOne organization made a tremendous PR blunder by allowing the California Department of Public Health staffer and Ullberg to register and then evicting them. From a reputational point of view, it would have been far better to refuse their registrations.

    I wonder what the payoff was for accepting the registrations then evicting them? Some sort of theater for the attendees? See, we protect your safety by removing these dangerous dissidents! . I don’t know.

  • 6 David N. Brown // Jun 1, 2010 at 10:41 am

    Ejecting people could serve to reinforce paranoia among anti-vaxxers. Then again, it could also serve as a means to discourage dissent by fellow “anti-vaxxers”. In any event, I suspect it will have made a poor impression even on many who favor anti-vax views.

    Somewhat offtrack, but does anyone have an idea how many people were at AutOne?

  • 7 Graphictruth // Jun 1, 2010 at 5:48 pm

    When you make it clear that nothing less than uncritical, positive coverage is what is required to gain a press pass – the reputable press will not be bothered to attend.

    By the way, publicly embarrassing a state employee? In a political machine town like Chicago? Brilliant.

  • 8 kara-noel // Jun 5, 2010 at 12:42 pm

    I’m popping around blogs because my niece was just diagnosed with AS (at 12).
    So interesting about the kicking out of the conference… you are right if they can’t listen nothing will be resolved!

  • 9 Julie // Jun 18, 2010 at 5:44 am

    I am a bio-med mom with a girl with the dual diagnosis of down syndrome and autism, and I attended one day of the conference. When I read about this situation on your blog, I thought, “Great. What happened, and why were these guys kicked out. It makes us look bad.” But one of the regular volunteers explained that last year, there were reporters being very disruptive and harrassing the lecuturers. They only attended the biomed sessions and were not there to present a favorable side to things, it was bad. This year was a reaction to that, to protect the attendees and guarantee that that would not happen again.
    I understand that you think we don’t want to be heard, but we do. At least all of those who I speak with do. And just so you know, biomed DOES work. Even my daughter’s teachers and therapists have said that the drastic difference in her HAD to be from the supplements and special diet that we implemented in her. It may not have a double blind, placebo controlled study behind it, but it works.

  • 10 autblog // Jun 19, 2010 at 8:10 pm

    Julie, are you saying that a reporter was expelled from AutOne last year (2009)?

  • 11 Julie // Jul 4, 2010 at 8:12 pm

    No, not that I am aware of. Just press harrassing speakers and being disruptive during some of the talks.

  • 12 autblog // Jul 5, 2010 at 7:20 am

    Can you give examples? Or are you just repeating hearsay? I’d not heard that reporters were intentionally harassing and disrupting speakers. You’re talking about the 2009 conference, right?

  • 13 Chris // Jul 6, 2010 at 7:38 pm

    You might be interested in this opinion of Ms. Arranga.

  • 14 autblog // Jul 10, 2010 at 3:40 pm

    Very interesting. Teri Arranga is, apparently, a liar.

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