Thursday, June 14, 2007

ARROGANCE AND ASSIMILATION, PART 1

Illustration courtesy of Lenny Schafer.

There are names that elicit a visceral reaction at their mere mention. Autism Speaks has now claimed that distinction. It has come close to its goal of uniting the autism world; it is equally despised in both the neurodiversity community and the biomedical communities.

I used to refer to AS as the “Pac Man” of autism organizations, wandering around chewing and devouring all that strayed into their path. A more apt characterization has come from Lenny Schafer (see illustration), who has likened AS to the fictional Borg. For those who are not Star Trek fans, the Borg are a race that falls somewhere between carbon-based life forms and machines. They roam the universe as a collective, “assimilating” everything and everyone they come upon. If anyone dares to object to assimilation, the Borg arrogantly inform the objector that “resistance is futile.”

And that has been the story of AS, assimilating NAAR and CAN, and telling the rest of us that “resistance is futile.” We should simply get with the program and toe the AS line.

Bob and Suzanne Wright started AS after their grandchild, Christian Hildebrand, was diagnosed as being autistic. To give them credit, it was a positive step when one considers that people of power ⎯ as the Wrights certainly are ⎯ often go to great lengths to hide away autistic family members rather than publicly acknowledge their loved one.

Recently, though, the Wrights seem more inclined to put a little distance between themselves loved ones: specifically their daughter, Katie Wright (the mother of, and the one who lives with and cares for Christian every day). Although she is always careful to make it clear that she is not a spokesperson for AS, Katie and Christian are in many ways the faces of the organization. This is what Bob and Suzanne Wright had to say in that regard lately:
Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.

Autism Speaks is committed to finding the causes of and a cure for autism. We are proud of our scientifically based research programs, including those established by NAAR and CAN, and will continue to pursue them. The members of our scientific advisory teams have impeccable credentials and we fully support them. There is no question that genetics plays the leading role in autism and that environmental triggers are key issues for many children. These areas, as well as biomedical treatments, need huge research support.

Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter’s statement.

Interestingly enough, the sentence about loving their daughter was not part of the statement when it was first posted to the AS site, but was added later.

What prompted the statement was a two-hour interview Katie gave to David Kirby, which was videotaped and released by F.A.I.R. Autism Media (a 30-minute version is available for viewing here). In the interview, Katie referred to both of her parents as “courageous,” and she expressed unabashed pride in them. There’s absolutely no reason to believe that there is any lack of love between Katie and her parents, so the terse disavowal emanating through AS is rooted elsewhere.

Just as she has done in other appearances, including her recent Oprah appearance, Katie made clear her belief that Christian’s regression into autism ⎯ and her vivid description makes clear that Christian regressed into and was not born with his autism ⎯ was triggered by vaccinations. And she goes further by describing the progress Christian has made after biomedical interventions, and also by praising controversial figures like Dr. Andrew Wakefield. That’s going just a little too far for some in the AS camp even when it is made clear that those opinions are not expressed on behalf of the organization.

In her interview, Katie hinted that the shameful emphasis on genetic research to the near exclusion of environmental research by AS thus far is solely due to the ongoing influence of the NAAR board, resulting from the merger between those organizations (i.e., the assimilation of NAAR by AS). But is she perhaps being a little naïve about her parent’s views.

Recently, Bob Wright gave an interview to TV Week, commemorating his recent retirement as the head of NBC, and at the end of the session, he was joined by Suzanne so that the two could discuss their involvement with AS:
TVWeek: Is it a problem where throwing enough money at it will help us find out why this is happening so much, as well as helping these kids to live a life that’s more independent?

Bob Wright: Well there’s no question that money plays a good role here.

Suzanne Wright: Oh sure, look what it did for breast cancer and AIDS.

Bob Wright: You have to throw a lot of money at this. There is money that’s been invested here in genetic work, and I think most people who follow autism scientifically would suggest that genes have a great deal to do with both the cause and the cure. The theory is if you can identify the genes then you’re closer to being able to do something about them. ... But that’s also a very, very expensive process. And it takes a long time. And so it doesn’t create the kind of hope for parents who currently have [autistic] children. And our [job is to] balance that ⎯ we have to try to help parents with children right now, but we have to help the community by zeroing in on the cause, and that’s where genetic work becomes critical.

Suzanne Wright: I believe there’s a cause, there's a genetic predisposition, but I believe there's an environmental factor going on here that’s putting these kids over the top.

Bob Wright: While we believe the genes play a role in this, there’s clearly all sorts of difference in these children. So it’s not like one set of genes, one set of kids. The kids develop this in different periods and have different impacts, which clearly identifies there’s some environmental experience that takes place that sets off some subset in these children. And there has been almost no money spent. And this is very tough scientific work to do. It’s epidemiology and everything. There just hasn't been the motivation on the part of the [National Institutes of Health] or the part of the CDC to be able to do this, much less the funds. And lastly, there is this issue of looking for biomedical markers, which is another way of saying let’s move away from the gene search, let’s look at conditions that we see and let’s look at the children who have these particular conditions, how they differ from other children. ...

Suzanne Wright: Something happened to Christian. Something happened to him.

Bob Wright: We’re on a hunt. We’re going to be on a hunt for biomedical markers, which is not the same as a gene search. ... I think we’re three or four years away from accomplishing quite a lot. That’s what I believe.

Suzanne Wright: And we got a lot accomplished already. We got the Combating Autism Bill passed. It was signed into law. [And on March 20 Sen. Hillary Clinton, D-N.Y., and Sen. Wayne Allard, R-Colo., introduced the Expanding the Promise for Individuals With Autism Act of 2007.] ...

We’ve now merged with every major autism group in the country. So we are the largest. And I was just invited to Qatar by the princess and the amir because she is having a symposium over there for special needs children ... and over there it’s taboo talking about this. And so she’s invited me to come over with the Ad Council because ... her people were most impressed with how broad the Ad Council campaign was over the last year and how much it spread across the country. So ... I'm going over there with the Ad Council and we’re going to give an hour of Power Point presentation. She’s going to let me show my movie. Only three movies are going to be shown and mine’s one of them. ... It's going to be very global, because it’s a global problem.

Mr. Wright clearly implies that environmental research can wait until we’ve found a way to identify what children are specifically at risk. In other words ⎯ and his use of the term “biomedical markers” cannot change this fact ⎯ the focus of AS funding is genetic.

So what’s the problem there? Why can’t the groups who have not yet been assimilated just raise their own funds for environmental and biomedical research? Unfortunately, sources of contributions are not endless, and AS has set itself up as the “only game in town.” The message is clear; assimilate or be irrelevant.

It’s one thing to be an “umbrella.” It’s another to turn off the pumps and let drown those you claim to serve.

Next time, we’ll look at the ruthlessness with which AS attempts to silence any dissenting views.

6 Comments:

Anonymous Robin Nemeth said...

Nice, that ‘turning off the pumps and letting people drown’ metaphor. Heh.

I’ve been told that I’m supposed to feel guilty about handing out information at a recent Autism Speaks benefit concert in downtown Cleveland. The lovely women of AS told me that it was because they’d worked so very hard for their evening out on the town. I can understand why mothers and fathers of autistic children would need a night out once in awhile, but cannot fathom how my standing outside the House of Blues handing out information about thimerosal and autism,in their words, “spoiled their evening”.

Perhaps, I said to myself, they were upset because I was trying to steal their limelight. Perhaps, I said to myself, before they showed up there in front of the HOBs, all dressed to the nines in their shining clothes and being let off by the doors to have the valets park their cars, they put in untold hours of effort in order to raise the money being paid for the concert. (It was a hundred dollars per person, a bit too pricey for me and my husband to have gone inside to enjoy the show.) Perhaps they felt that because of that, they were entitled to feel that they owned the attention for the evening. I’m not sure how owning the attention of onlookers for one evening was going to in any way help autistic children. They’ve owned the media spotlight for decades now and have accomplished nothing, at least not for autistic children.

I was there with my husband, in my ‘autism, it’s no mystery it’s mercury’ tee shirt. I started out handing out flyers outside of the doors, and when I was asked to leave I began handing them out off to the side of the property, hoping to get peoples attention as they came down the sidewalk. When I discovered that everyone was having their cars parked by valets, I went inside and told them that I would continue to hand out flyers directly outside the HOBs doors, and it was public property and I felt that I had the right. Even though they did offer to put my flyers on their table with other information they were handing out at the event, I told them that no, I would prefer to just hand them directly to people outside. I was told by the women in the lobby that they would see if that was ok. Although I wasn’t sure why they felt that they had the right to decide whether or not it would be okay, I waited a few minutes for them to return. No one came back to talk to me though and so after about five or ten minutes, I went back outside. I believe it was at that point that I was told I would be arrested if I didn’t leave.

As God is my witness, I was doing nothing that I could have been justifiably arrested for. I wasn’t accosting anyone. I wasn’t trying to speak to anyone who didn’t want to hear it. I wasn’t in anyone’s way. I was willing to compromise to some extent to appease the lovely ladies of AS so that I might not totally ruin their night out, by standing off to the side of the property, at least at first, and when the owner of the valet service told me that I couldn’t approach people in their cars I agreed to stay off of the street and on the sidewalk. But when they told me I could be arrested simply for handing out flyers on public property, I told them I didn’t think so. A police car came and the officers told me that I had to leave, but I didn’t really think that that was the case, at least not by law. They sent for their supervisor, who was quite nice, and told me that I could stay so long as I kept moving and didn’t try to obstruct anyone from going inside. (I didn’t need to be told not to try to stop anyone from going inside, sheesh, I’m not some rude ape…)

I am not about to feel the least bit guilty about attempting to make use to some extent of the huge amount of media and public attention that follows that organization with cultlike obsession.

I intend to be at the next local AS event, which is a walkathon at Jacobs field, only this time I’ve gotten word that a few others who think more along the lines that I do, when it comes to the causes of autism, will be there too. I will be there with my thimerosal flyers, and this time, if they threaten to have me arrested, I will be armed with my ‘whorehouse’ flyers,

http://www.wideopenwest.com/~r_nemeth/autism_speaks_whorehouse.htm

which, this time, I will bring out from under the seat of my car. Do I care if I’m seen as hysterical or fringe or looney or obsessed, because of them? Hell no. I’m sure that I am going to be portrayed that way anyway by all of those who get money by helping to convince the public that all that the government is saying about autism (“it’s genetic, it’s not vaccines, nothing to see here folks, move along now…”) is true, no matter what I do or don’t do, so long as I have the audacity to question their organization and the public health authorities by saying the taboo word ‘thimerosal’.

Suzanne Wright spoke about how it’s taboo in Qatar to speak about autism. That’s pretty funny. And ironic. I would suggest that she try to speak about thimerosal in just about any politically oriented internet chatroom, either left or right leaning, and see what happens, if she believes that we, as Americans have the right to feel superior for our openmindedness. Go ahead, try it. Stick to the facts, be polite no matter how rude and even mean they are to you, don’t focus on it and nothing else because you want to understand that this is hard to swallow and you don’t want to bash peoples’ delicate sensibilities too hard over the head with it. Try it and see what happens.

They may own the television news coverage, and they may own the radio and most of the major newspapers and most of the internet chatrooms. and they may even own AS, but the pharmaceutical companies don’t own the sidewalks, at least not yet.


Robin Nemeth

6/16/07, 7:24 AM  
Blogger LIVSPARENTS said...

So, you have a God given right to yell "fire" in a crowded movie house, huh Robin? Even though management has shown you the smell you smelled was just burnt popcorn; you insist that 'where there's smoke there's fire' and that all this smoke couldn't possibly have come from the popcorn?

The reason that the thimeresol crowd is attacked is because they are diverting precious attention away from the issue of autism in favor of a simplistic, all emcompassing theory of autism everything. When you have people making outrageous statements like 90% autism is vaccine related and chelation is the only way to 'save' those poison by it, the movement not only loses credibility but can cause real harm. Not only do you have the obvious 'downtick' of vaccinations because of the unfounded panic and baseless accusations toward vaccines in general; you also create manic parents of autistic children that insist on doing nothing but chelation for their children. They miss out on countless opportunities to help their children out in other ways in their quest to quickly remove the poison from their children.

If this is what you consider a rude attack, then so be it. But, if you'd like to see REAL fanatacism just try yelling 'genetics' in a crowded EoHarm Chatroom...

6/16/07, 6:13 PM  
Blogger Wade Rankin said...

The "yelling fire" analogy usually refers to going beyond the limits of free speech. Standing on a public sidewalk, wearing a shirt with a message and handing out literature is obviously well within the realm of protected speech; you're way off base with your criticism of Robin.

Moreover, Bill, you're missing the point here. That point is the arrogance of an organization that looks upon itself as the sole voice of the autism community, yet doing all in its power to silence anyone who disagrees -- whether that disagreement is over causes and treatment or is over the portrayal of autistics in its fundraising videos.

6/16/07, 10:53 PM  
Blogger LIVSPARENTS said...

The complaint is made that the position of thimeresol causation is shouted down and treated with distain. I would put forth making these accusation can result in dangerous consequenses. I have no qualms with exercising free speech, but don't expect to be met with quiet acceptance...

As far as AS goes, at least we have a cohesive (and LOUD) voice that we did not have 2 years ago. i repeat what I said somewhere else a few days ago about the apparent isolation of AS, alienating BOTH sides. A good comprimise usually leaves BOTH side angry. Autism Speaks still has a way to go, but I still will work with them to help refine the message...

6/17/07, 10:17 AM  
Anonymous Anonymous said...

So how come Baxter's dad couldn't help out with Robin Nemeth's situation at HOB? He's some kind of head honcho with that company, isn't he?

6/24/07, 7:52 PM  
Blogger Wade Rankin said...

Oh my, a little anonymous arrogance.

6/24/07, 8:03 PM  

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