Wednesday, June 20, 2007

ARROGANCE AND ASSIMILATION, PART 2

Truly, one can tell a lot about someone by the company he/she keeps. The same can be said for organizations. The assimilation of NAAR by Autism Speaks was a little surprising to some who thought Bob Wright shared the family vision of an environmental trigger for his grandson’s ASD. Instead, AS not only took on the NAAR organization, but it handed over control over its research efforts to the absorbed NAAR. Clearly, that was an assimilation of the like-minded.

The subsequent assimilation of the inaptly named “Cure Autism Now” organization (CAN) was far less of a surprise. First, CAN seemingly shared the same mindset that we are far away from effective treatments. But more to the point, the run-roughshod-over friend-and-foe-alike political style of the two organizations was too close for them to stay apart.

A glaring example of that mindset occurred when the birds hatched from the Combating Autism Act came home to roost. Congress decided to hold hearings to begin talking about how to appropriate the money that’s authorized by the CAA, but at first it seemed that nobody was really interested in a wide range of opinions.

On Tuesday, April 17th, a Senate hearing entitled “Combating Autism: Undertaking a Coordinated Response” was held. Two separate panels of witnesses were scheduled. The first (surprise, surprise) included Dr. Julie Gerberding, Director of the CDC, and Dr. Thomas Insel, Director of NIMH. The second panel included a doctor involved with video-based behavioral treatments (oh yeah, that’ll work) whose business is partly funded by NIMH, along with two representatives of Autsm Speaks: its founder, Bob Wright, and celebrity spokesperson, Bradley Whitford. Later, a representative from (the non-assimilated as of yet) Autism Society of America (ASA) was invited. In other words, they rounded up the usual suspects.

A couple of days before the hearing, something happened that wasn’t supposed to happen. Word got out that there was going to be a hearing. One of the people who help with CAA Watch, the watchdog effort started by A-CHAMP, heard about it and got the word to the right people. Congressional offices were flooded, and A-CHAMP was given the opportunity to present written testimony.

I have not seen any transcripts yet, nor did I have a chance to watch any of the C-Span coverage, but I understand that Bob Wright may have actually mentioned the “V” word in his testimony and discussed the need to study biomedical interventions, including chelation. Maybe he felt that it would behoove him to look open-minded in front of the relatively open-minded Chairman of the Committee, Senator Harkin. Or maybe he just decided to appear a little more open, knowing that written testimony about non-genetic causes was going to come in (go here for a pdf of Robert Krakow’s written presentation). All we really know is that the official notice of the hearing was released at the very last minute. That’s par for the course. But more disturbing was the fact that Autism Speaks did not see fit to make sure that other organizations ⎯ including those that might view the vaccine controversy a little differently than it does ⎯ got the word.

Autism Speaks has set itself up as the voice of the greater autistic community ⎯ the big tent. Taking on that role carries with it certain responsibilities, including the obligation to ensure that every voice is heard.

Unfortunately, politics of that nature is nothing new to Autism Speaks or to CAN. Passing the CAA was not without a degree of backstabbing. As you may recall, there was a consensus among several organizations regarding the need to pass the bill, and what it should say. When it became clear that some of the Congressional sponsors were not going to tolerate the consensus language, battle lines were drawn. Some of the organizations ⎯ most notably No Mercury and A-CHAMP ⎯ took a principled stand that no bill would be acceptable that failed to acknowledge that there is an open question as to the role that the nation’s vaccine program may have played in the ongoing epidemic.

And what did the exercise of principle get those who stood tall for our children; the phrase that was tossed around by all quarters was that they “walked away” from the table. That was an odd phrasing inasmuch as I don’t believe it is possible to walk away from a table to which you were not welcome.

When it became clear that the Senate HELP Committee was not going to report the consensus bill, Robert Krakow, President of A-CHAMP, circulated an email to representatives of the other groups forming the autism consensus:
The best way to address the vaccine issue is to leave it right in the bill, as we agreed. If the committee can justify a statement in the legislative record including vaccines as “environmental,” I do not understand the objection to leaving it in the bill as we discussed. [Emphasis added.]

One of the recipients of that email was Craig Snyder, a Board member of CAN, who apparently did not fully comprehend the difference between the buttons on his email browser marked “reply,” “reply all” and “forward.” In any event, Mr. Snyder’s response, which had apparently been intended for Elizabeth Emken of Autism Speaks but wound up going to others as well, was quite telling about where he came down on the question of maintaining unity among the consensus members:
you’ve got to sit on this guy...i think you should start by saying that his questions were discussed in the call he missed and he should inform himself before launching broadsides, then as i said before, i think we need another call

How did all this come about? A few months back, I asked Mr. Krakow (who I consider to be a friend) about it, and a series of emails resulted. With his permission, I have weaved together some of those emails to tell the complete story of Mr. Krakow’s role in the CAA soap opera.
A-CHAMP and other groups were approached by CAN in the late summer of 2005. This was after CAN (Cure Autism Now), AS (Autism Speaks), and ASA (Autism Society of America) had a press conference in April ‘05 announcing the bill. They never consulted us about their bill. They said they had gotten feedback from Congress, that Congress was getting conflicting messages on the bill, and they wanted our support.

I participated in several conference calls ⎯ there were AS representatives and ASA reps too. Most of us expressed our displeasure with the CAA. After several meetings, they came back and started discussions to come up with a bill we could support ⎯ a so-called “consensus” bill. We were surprised by this

So around November ‘05, a consensus bill was produced that looked pretty good. I immediately asked questions as to when it would be introduced and what was the process; and the pattern of getting no answers began in November and December ‘05. I remember calling [Elizabeth Emken] and being given reassurances that the bill would be introduced. But if the bill was not introduced, how real was it? Or was it just a way to organize support for the real bill?

I kept making inquiries throughout November to January about the bill and continued to receive reassurances. On occasion I called the CAN representative and our A-CHAMP Congressional liaison did the same. Then we observed lobbying activities by CAN, AS and ASA. They publicized visits to Congress advocating for the “CAA,” yet the “CAA” in Congress was the original bill, not the consensus proposal. This was obviously disconcerting to me. Precisely what were we advocating?

A series of emails occurred in February 2006. I wanted to be persuaded that the revised consensus bill would be our “highest priority,” and I also wanted to know the status of the bill.

I eventually was persuaded that the bill was worth supporting. A-CHAMP then was the first organization to send out action alerts. In March and April, we generated thousands of emails and faxes in support of the revised bill ⎯ all based on continued representations by CAN that the revised bill was being considered in committee and would be introduced “soon” ⎯ first March, then April. I personally convinced many skeptical parents to support the revised bill. I put my neck on the line by reporting the assurances that this was the bill that would be introduced in the Senate.

Meanwhile we saw more reports of lobbying efforts. We were not included, invited, informed, and in my opinion we were not wanted at those lobbying efforts. I complained to my colleagues about the “process.” We were excluded from the process and had no control. All of our information was second- or third-hand.

In March, David Kirby published a piece on Huffington Post titled “Doctors Against Research,” in which he reported that the American Academy of Pediatrics (“the AAP”) opposed the bill and was lobbying against it. Yet it wasn’t until a couple of months later, when I saw her at Autism One that Elizabeth Emken let me know that she was at the meeting at which the AAP lobbyists revealed their position on the CAA.

In the keynote address at Autism One, I noted the historic nature of the CAA. The autism community came together to support it and reached an historic consensus. What was important was the consensus and the unity, and not the bill itself. For if we were truly unified we could get the bill we really wanted. So if for some reason the consensus bill was altered it was more important that we stay together as a community and come back the next time and get a better bill ⎯ the one we want.

At Elizabeth Emken’s presentation at Autism One, I asked her what happened to the consensus bill. She stated point blank that she knew of no reason why the consensus bill would not be introduced.

In June, we got emails from Elizabeth Emken and others suggesting we should trust Senator Santorum and that the HELP Committee would make a floor statement clarifying that the call for environmental studies included an investigation into the role of thimerosal. It was then that I questioned why the vaccine language couldn’t be left in.

It was a question that got no answer other than a strong rebuke.

And the rest is history. We got a flawed bill, and Autism Speaks cemented its place as the most visible ⎯ and in its own view, the most important ⎯ organization in the autism world.

Let me make it clear that the CAA, itself is not the issue. Nor can an organization be faulted for continuing its support of the CAA. Many of the organizations (e.g., NAA, SafeMinds, TACA, Generation Rescue, and others) that continued to support the bill are great groups with the best intentions and fine records of cooperation. They are worthy of support; Autism Speaks is not.

The point is that there must be room for disagreement among such organizations. There must be a continuing dialog. Autism Speaks, however, does not believe in dialog. They wish to speak, and not listen.

Next time, we'll look at where we are, where we're going, and why this matters even if you don't believe in the vaccine hypothesis.

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