Are autism organizations acting in good faith?

19 Jan

As one might imagine, this is a follow up post to Kev’s post, Did the IACC act in bad faith?

Obviously, much damage control is ongoing right now. Some autism organizations were hoping for a document from the U.S. Federal Government indicating that vaccines might be implicated as a causal factor in autism. No surprises there. They managed to get some language and a possible research project into an early approval stage for inclusion in the IACC’s Strategic Plan.

Now, these same autism organizations are crying foul that the vaccine language was removed. Autism Speaks has pulled support for the Plan under the cover story that they are upset at the process–that a “previously voted-on decision” was revisited without “forewarning”.

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December—would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

Bob Wright, founder of Autism Speaks, stated “Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

So, this wasn’t on the agenda, so it is a “surprise tactic” and this is why the process is “tainted”. Somehow, this just didn’t ring true to me when I read it.

Anyone else check the actual agenda? In case you don’t want to click on the link, here it is:

Time Event
8:00 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:05 Brief Introductions of IACC Members
9:10 Review and Decisions: IACC Strategic Plan for ASD Research: Introduction
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:40 Break
10:45 Continuation – Review and Desicisons: IACC Strategic Plan: Budget Recommendations
12:15 Lunch
12:45 Continuation – Review and Decisions: IACC Strategic Plan: Budget Recommendations
1:15 Review and Decisions: IACC Strategic Plan: Finalizing the Plan
2:00 Break
2:10 Open Session for Public Comment
2:30 Closing Comments and Adjournment

What are the main parts of the agenda? “Review and Desicisons: IACC Strategic Plan: Budget Recommendations” and “Review and Decisions: IACC Strategic Plan: Finalizing the Plan”

Pretty broad agenda item there. Definitely broad enough to cover revisiting the vaccine proposals. Not a “surprise tactic”, not something outside the agenda. Just an action that probably saved the Strategic Plan from being voted down.

TACA is stating that the IACC “rescinds vaccine research initiatives”. Makes it sound like there was a hard commitment to the research initiatives. There wasn’t: the Strategic Plan wasn’t finalized. They also play the “it wasn’t on the agenda” card, like Mr. Wright.

SafeMinds is stating that the action by the IACC defies “wishes of its own scientists”. No kidding, they say that. They say that it also defies the wishes of “Congress”. As Kev has already pointed out, where does the Combating Autism Act state that vaccines should be researched? (hint, it doesn’t). I guess a couple of people speaking in a Colloquy are all of Congress? Because, that’s the only place where this vaccine language is included related to the CAA–the Colloquy–a couple of short speeches given after the Act was voted upon. There were also arguments made before the CAA was voted on about vaccines, including a lot of lobbying by these same autism organizations that are now crying “foul!”

That tells this reader one very important fact: Congress specifically did not include vaccine language in the Combating Autism Act. Seriously, we likely wouldn’t have a CAA if the vaccine language was included. They wouldn’t have had the votes to get it passed. But, hey, that doesn’t make a good press release, does it?

SafeMinds has gone so far as to pull its support for the Strategic Plan. If SafeMinds’ very own Lyn Redwood would like to follow the example set by Alison Tepper Singer and resign (in this case, from the IACC), I’ve got a few really good suggestions for who could fill the seat.

But pull it all together: Autism Speaks, TACA, NAA…all these press releases are damage control. OK, that and they are jockeying for position to complain to the new U.S. administration about how they have been “marginalized”. But, are they being truthful? Are they, as supposed representatives of the “Autism Community”, using their position wisely?

Let’s face facts: the Strategic Plan was going to be voted down. The majority of the members didn’t want the vaccine language included. The options were simple: revisit the sections on vaccines now and get the Plan passed or have the Plan go down in flames now and rewrite the sections on vaccines later.

Either way, the vaccine language was going to be out.

Doesn’t make a good press release, though, does it? “We were going to lose anyway, but we want to pretend like they acted improperly”. Somehow I don’t see Generation Rescue, TACA, SafeMinds, or the NAA issuing such a simple, truthful statement.

16 Responses to “Are autism organizations acting in good faith?”

  1. jat January 19, 2009 at 17:03 #

    How “surprise” a tactic could it have been, especially to Bob Wright, when Alison Tepper Singer resigned from Autism Speaks in advance of the meeting, specifically so she would feel free to vote as she wished on this issue? They both knew that it was coming up and that she held a different view from his and from that of Autism Speaks. His statement is, to put it nicely, disingenuous.

  2. K January 19, 2009 at 20:04 #

    I hate to be a conspiracy theorist, but could Singer have just taken a pre-arranged fall for Autism Speaks with full knowledge that Wright would come out against her due to family issues? Does AS currently fund any vaccine research and wasn’t that Katie’s beef that they didn’t but they promised to?

  3. Zach Lassiter January 19, 2009 at 20:25 #

    I picked apart this press release a few days ago on my blog as well and found several holes.

    http://www.aspieweb.net/coup-at-autism-speaks/

  4. Patrick January 20, 2009 at 21:51 #

    Good, maybe all of the jilted tainted advocacy agency’s can now close up, shut up, and make way for some real philanthropists?
    (I know, keep dreaming!)

  5. Sullivan January 21, 2009 at 02:37 #

    Patrick,

    they haven’t even slowed down to catch their breath. GR is already posturing with a “we’ve contacted counsel with our grievances about the IACC”.

    The funny thing–the GR audience buys it. They haven’t put together the obvious: this just means that the congressional investigation that they got started must be stalled or dead. So, now instead of wasting taxpayer money, they are wasting their own money. OK. there is the possibility that they are wasting the money of the law firm. Either way, it doesn’t reflect well on GR.

  6. Harold L Doherty January 21, 2009 at 03:01 #

    Not to disturb the usual self congratulatory back slapping at LB/RB but the very general items listed on the agenda make no mention of reconsideration and voting on a possible reversal of a funding decision made only weeks earlier.

    Autism Speaks has posted a somewhat more substantive analysis of the issue that you might want to consider before staking anymore of your “credibility” on this line of attack.

    See:

    http://www.autismspeaks.org/inthenews/jan_14_2009_iacc_meeting_summary.php

  7. alyric January 21, 2009 at 15:18 #

    Harold

    Apparently reconsideration of objectives is the order of the day according to the language of the document you’ve linked to:

    “IACC also agreed to include language that Lyn Redwood, a public member of the committee, submitted to articulate the urgency of addressing autism. This language is to be reviewed by the Office of Autism Research Coordination and a draft will be circulated before the plan is complete.”

    And they decided no, ultimately.

  8. Joseph January 21, 2009 at 15:58 #

    Not to disturb the usual self congratulatory back slapping at LB/RB…

    Funny, I think there are actually way too many concern trolls here.

  9. alyric January 21, 2009 at 20:47 #

    A concern troll? Must be a new breed. What does it look like?

  10. Another Voice January 22, 2009 at 06:42 #

    It would appear that one of the organizations made it abundantly clear to their employee representative that research directed at linking vaccines to autism had to be in the plan. I think that Autism Speaks, by accepting her resignation, sent the signal that if you don’t support the vaccine causes autism theory you do not belong working for us. That is my view of their response. Coincidentally they are also saying if you don’t support the vaccine causes autism theory you should not be contributing to us.

    The government should learn to question participants prior to appointing them to committees such as this. It isn’t that difficult or unusual to ask candidates if there are predetermined positions that are required to be in the final product in order for them to support it. My response to such a question would be that there must be a strong educational plank and a robust section on adult support. They could then decide if they wanted someone who felt strongly about these issues in the group or not. Someone else could respond that research linking vaccines to autism is a deal breaker for them; again the leadership could evaluate. This dancing around an issue for over a year is a waste of time.

  11. Dwight January 22, 2009 at 15:17 #

    @alyric

    http://en.wikipedia.org/wiki/Troll_(Internet)#Concern_troll

    Not exactly “new”, see reference to WWII espionage. 😉

  12. Dwight January 22, 2009 at 15:18 #

    Hrmmm, looks like the comments script didn’t properly recognize the full URL.

  13. Jim Witte January 22, 2009 at 20:42 #

    > Hrmmm, looks like the comments script didn’t
    > properly recognize the full URL.

    Not having seen the code (is the blog engine for LB/RB OSS?), but I’d suspect it’s a problem in a regex expression for parsing out the URLs, noticing that it stopped on the underscore – which is an unusual but not illegal character. It may also stop on the hatch sign (#) for the anchor. OSX Mail has a similar bug with the hatch sign..

    Jim

    • Kev January 23, 2009 at 00:18 #

      Hi Jim

      Its WordPress but I think the issue is the same. I’ll go bug the support forum (again!)

  14. alyric January 23, 2009 at 02:21 #

    I had to wade through muck to get this – very nasty comments from all sides and far too much testosterone flying around:

    “Gluyas, if your mother had put you in an institution where a wingnut like you belongs, you would not be in the position you are in right now. You would be in a straight jacket without access to a computer or internet connection so you would not constantly be making the complete jackass out of yourself that your moronic behavior is doing”

    Hard to believe that an autist wrote that, but he did, which shows the ‘no standards required’ approach to discussion. And this is the guy who thinks that ND folk are the first to spill hatred; not likely.

  15. alyric January 23, 2009 at 02:42 #

    How do you delete a post? Accidentally put one in the wrong place.

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