Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation, ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

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Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity—the idea that we should understand and accept autistic people as a group that thinks differently from the majority—has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.

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On a Facebook page entitled ‘Fan photos from Age of Autism’ you will find this (click for bigger):

Lets not kid around here, this is a direct threat of violence towards people carrying ‘syringes’ i.e. people who might want to vaccinate children. I have no idea if Jenny McCarthy has any knowledge of this photo but its clear from the title ‘fan photos from the Age of Autism, that Age of Autism clearly do.

Lets also be clear about the utterly anti-vaccine message of this image. The editors continually describe themselves as ‘pro-vaccine safety’. Let me suggest to them that creating a picture of Jenny McCarthy threatening people carrying syringes in a medical setting isn’t pro-vaccine safety. Its anti-vaccine pure and simple.

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As I blogged recently, Paul Offit was a guest on a US show called The Colbert report. Whilst emailing him about his appearance he mentioned the following:

Of interest, one of the show’s staff said that xe had been called by Jenny McCarthy (which I assumed meant Jenny McCarthy’s handlers), who told xyr not to mention Jenny’s name because Jenny no longer speaks out against vaccines . [Jenny’s handler was told] that Colbert wouldn’t mention her name but I was welcome to. The opening came when Colbert said he hadn’t heard about the science. But I didn’t mention McCarthy.

My, my. I wonder if anyone has told the founder members of Generation Rescue this little factoid? And what use to them is a Jenny McCarthy that won;t spout off about vaccines at the drop of an opinion?

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One of the defenses of Andrew Wakefield is that his paper doesn’t actually claim to have proven that MMR and autism are linked. You can find it in the interviews, you can find it on the Generation Rescue (Jenny McCarthy’s autism organization) website:

The mainstream media is in a frenzy over a new “study” claiming that Andrew Wakefield’s 1998 Lancet paper was fraudulent. For years, the media has mischaracterized Wakefield’s work as implicating the MMR vaccine in the autism epidemic. This was never true, as Wakefield himself wrote in the conclusion to his paper:

“We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described.”

You can find it in Jenny McCarthy’s blog post on the Huffington Post:

Is that the whole story? Dr. Andrew Wakefield’s study of 12 children with autism actually looked at bowel disease, not vaccines. The study’s conclusion stated, “We did not prove an association between measles, mumps and rubella vaccine and the syndrome described [autism].”

And, they are correct. The paper does state that. And it is correct, the study did not prove any link. Which leaves us with the question: how could the press have made such a mistake as to think that the paper supported a link?

For starters, from Andrew Wakefield himself.

From the video that his employer at the time, the Royal Free Hospital put out:

DR ANDREW WAKEFIELD: I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

He called for a suspension of the MMR vaccine at the time. Pretty strong message to send to parents.

In addition, as Jenny McCarthy tries to distance Andrew Wakefield from linking MMR and autism, let’s take a look at her own website, Generation Rescue dot com. They claim that the number one paper that supports the idea that a trigger of inflammation and the current resultant behaviors is the Wakefield 1998 study in The Lancet:

Children with neurological disorders are often suffering from severe gastrointestinal distress and inflammation. A trigger of this inflammation and the resultant behaviors is the MMR vaccine.

We cite four published studies that support this position:

Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children
Lancet 1998 Feb 28 Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, [University Department of Medicine, Royal Free Hospital and School of Medicine, London, UK]

Not surprisingly, the exact same text is included on the “14 studies” website, a site set up by Generation Rescue.

So, according to Generation Rescue, the Lancet article supports the position that the MMR is a trigger, even though the article itself says it doesn’t prove a link.

Generation Rescue and Jenny McCarthy have spent years putting the notion of a link between MMR and autism into the public’s mind. They have relied, heavily, upon the Lancet paper to make this assertion. And now they blame the media for propagating this idea?

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As late as just a few months ago, The Autism Research Institute (ARI), promoted their upcoming Fall 2010 Defeat Autism Now! conference in a monthly newsletter. Note the name of the conference:

“Fall 2010 ARI/Defeat Autism Now! Conference”
http://www.ariconference.com/enews/enewsletter_201010.html

Now look at ARI’s promotion of their Spring 2011 conference.

“Spring 2011 ARI Conference
(formerly known as Defeat Autism Now!)”
http://www.ariconference.com/enews/enewsletter_201011.html

Do you see the difference? It’s pretty hard to miss. What about all those practitioners (physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths, etc.) who want to participate in the “DAN! Physician Training”, you know, become “DAN! Practitioners”? How does one become a DAN! doctor, if Defeat Autism Now! is a former identity?

A quick look at the ARI Conference website answers that right away.

The Autism Research Institute Conference Formerly known as Defeat Autism Now!

The practitioner seminars are still part of the conference. But there’s something potentially newsworthy here too.

As of 12/31/11, ARI will no longer be maintaining a clinician registry (a.k.a “the DAN list”). No new names will be added to the registry in 2011.

Source

You read that correctly – no new names in 2011, and at the end of this year, it’s over. No more list of DAN! Doctors.

According to ARI’s website, one is best served in finding a “talented clinician” by way a support group – local, or you know, out there on the interwebs.

As recently as 10 years ago it was nearly impossible for parents to find clinicians who approached treating patients with autism from a medical point of view, so ARI started keeping a clinician registry (the “DAN list”). We tried a number of measures to ensure that every clinician on our list provided high-quality care, but we are a small non-profit with limited resources. We have determined that those seeking a talented clinician are best served by connecting with support groups—either locally or online—instead of choosing from a list that cannot be vetted.

Source

I’m not sure what they mean by having tried “a number of measures to ensure that every clinician on our list provided high-quality care”. I understand that there were special “clinician training” sessions at DAN! conferences in the past, but as far as I understood it in the past, becoming a listed DAN! practitioner might have required little more than attend a conference, sign a statement pledging to “conduct their practice in accordance with DAN! philosophy”, and ask to be listed. Although I could be wrong, I find it incredibly difficult to believe that there were in fact any significant measures taken by ARI to ensure the provision of high quality care by clinicians on its list. I seem to recall that Roy Kerry was added to ARI’s list of DAN! practitioners in 2006 after the death of Tariq Nadma in 2005.

ARI’s notes and disclaimers for the remaining year of life for the list of DAN! doctors seem pretty careful:

If someone claims to be “DAN-certified,” they’re overstating; neither ARI nor Defeat Autism Now! has ever had a certification program.

The following are practitioners who have asked to be listed as providing Defeat Autism Now!®- based interventions for patients with autism. Most are physicians, others are licensed health-care professionals in related fields.

ARI has no means of certifying the competence nor quality of practice of any practitioner. The lists are provided as a community service. The Autism Research Institute disclaims and does not endorse or support any individual or entity listed; makes no representations, warranties, guarantees or promises on behalf of or for those listed, and assumes no liability nor responsibility for any service or product provided. ARI does not ‘certify’ practitioners or guarantee competence, skill, knowledge, or experience.

Source

So is that it? Is this really the end of DAN! doctors in less than a year? Isn’t there a D-List celebrity with apparent anti-vaccine leanings , who can save (or may have already saved) the day for all the poor physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths who need be available to all those parents who are desperate to recover an “epidemic” of kids from autism, mercury poisoning, or “vaccine-induced” whatever?

Aha! Jenny McCarthy’s Generation Rescue! Where, from the home page, a parent can click on “Find A Doctor” and learn about the NGMD’s.

What’s an NGMD according to Jenny McCarthy’s Generation Rescue?

Answer: According to Jenny McCarthy’s Generation Rescue website, an NGMD is a “New Generation Medical Doctor”, and “These clinicians share Generation Rescue’s ideologies, practices, and philosophies of treating the underlying medical issues of individuals with autism.”

Source

I think this is potentially an interesting development, because in the past, a parent brand-new to an autism diagnosis might have assumed scientific credibility from a movement’s (Defeat Autism Now!) list of practitioners associated with a name like “Autism Research Institute”. If nothing, ARI is a scientific sounding name. I don’t think that’s as likely to be the case for the “NGMD’s”, who could be seen by many as simply associated with a fringe anti-vaccine group promoted by Jenny McCarthy.

What do you think?

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A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%—NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA - maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

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In June, 2008, Jenny McCarthy of Generation Rescue led the “Green Our Vaccines” rally in Washington. The stated reason for the rally was to “Demand Congress take action to Green Our Vaccine Supply while reassessing our current vaccine schedule.”

They weren’t anti-vaccine, they were anti-toxin.

How sincere was this movement?

Consider this question and answer from Jenny McCarthy’s interview for Frontline:

Tell me about “Green Our Vaccines” and what you want to happen.

I don’t think there is a green vaccine. The purpose in our statement of Green Our Vaccines really is: Let’s take a look at our environment. Let’s take a look at some of these toxic ingredients and pull them out. Let’s take a look at a safer schedule. I mean, our motto was “Too many, too soon” with the Green Our Vaccines march. And like I said, it’s not like I’m looking for a Whole Foods version of a shot. We’re looking for just a smarter and safer one in that title of Green Our Vaccines.

Repeated for emphasis—”I don’t think there is a green vaccine”. Sort of vague there. Is she saying there can be no green vaccine? That’s how I read it at first. Considering that Jenny McCarthy considers the active parts of vaccines (bacteria and viruses) to be “toxic” ingredients, I’m not sure if she can believe in a green vaccine.

So, was it really about “too many too soon”, the vaccine schedule? No. It’s still mercury. Consider Generation Rescue’s mission statement from their tax form (dated 2009-11-16). (click to enlarge)

My own rough transcription:

Generation Rescue, inc. has a four point mission. Gather information that exists about mercury toxicity and publicize the truth so parents can make the best decision to help their children heal. 2. Organize doctors to treat the millions of affected children through education and conference sponsorship. Sponsor research to further the understanding between mercury and neurodevelopmental and other health disorders and to help organize the cure for mercury poisoning. 4. Support legislation to ban the use of thimerosal in medicine on a worldwide basis.

The mission statement has nothing about “green vaccines” or “too many too soon” or any of the talking points. Just mercury.

Why bring this up? Is anyone surprised that “Green Our Vaccines” and “Too Many Too Soon” are just slogans?

Well, it is worth bringing up from time to time. Generation Rescue would like you to believe that there has been a big fail by the public health establishment. They would like you to believe that the government has been avoiding looking at “the schedule” and has only looked at “one vaccine and one ingredient”.

Well, one ingredient is exactly what Generation Rescue’s mission is all about.

As long as the tax form is available, take a look. Jenny McCarthy seems to be good for generating new revenue. GR brought in $1,185,255 in 2008. Pretty respectable. That’s up from $424,698 the year before.

Generation Rescue’s expenses went up to. They spent $229,213 fund raising alone. This was part of total expenses totaling $745,238.

Let’s break that down a bit. Of the total expenses, $220,654 went to “MARKETING &AWARENESS COSTS”. Let’s consider that to be part of GR’s mission, spreading the word.

What does that leave? Expenses of $524,584. Or, about 44% of the donations.

Another way to look at it: if you donate a dollar to Generation Rescue, 44 cents goes to overhead.

Of course, one could compare Generation Rescue to Autism Speaks, who takes in $66,000,000 in order to put out $27,000,000 in grants—or about 41 cents on the dollar goes to the mission. Autism Speaks has about $14,000,000 in fund raising expenses and about $18,000,000 in salaries.

Ah, but I am getting off topic.

Generation Rescue has a single mission. The same mission they’ve always had. They appear to expanding to “too many too soon” but, in reality, it is just about mercury.

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I’ve only been able to watch the first few minutes so far, but I wanted to make this available.

(I’ve emailed asking if there is a captioned version)

If you want to read—written interviews:

Jenny McCarthy
She’s an actress, celebrity and activist. Her son was diagnosed with autism following a series of vaccinations, and she’s helped organize a movement of parents concerned about a vaccine-autism link.

Cynthia Cristofani, M.D.
A pediatric intensivist who takes care of children who need critical care, Cristofani decided to start documenting the rare cases of vaccine-preventable illness that turned up in her Portland, Oregon ICU.

Anthony S. Fauci, M.D.
He is an immunologist and the director of the National Institute of Allergy and Infectious Diseases [NIAID].

Alvaro and Myrian Fontan
They watched in anguish as their 40 day-old baby Vanessa—not yet old enough for the pertussis vaccination—fought for her life.

J.B. Handley
A businessman whose son was diagnosed with autism, Handley co-founded with his wife the autism advocacy site Generation Rescue.

Paul Offit, M.D.
Co-developer of a vaccine for rotavirus, the leading cause of severe diarrhea in children, Offit is chief of the infectious diseases division at The Children’s Hospital of Philadelphia.

Robert W. Sears, M.D. A practicing pediatrician, he has developed an alternative vaccine schedule that differs from the CDC’s. Sears is the author of The Vaccine Book: Making the Right Decision for Your Child.

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I first heard that the show Frontline, from the Public Broadcasting Service (PBS), would be doing a show on “The Vaccine Wars” by reading comments posted online by supporters of groups like Generation Rescue. I was somewhat taken aback that they were happy to hear this was coming as Frontline is a very evidence-based show. I couldn’t see it being very supportive of Jenny McCarthy.

Frontline’s website had this to say about the show:

Public health scientists and clinicians tout vaccines as one of the greatest achievements of modern medicine. But for many ordinary Americans vaccines have become controversial. Young parents are concerned at the sheer number of shots—some 26 inoculations for 14 different diseases by age 6—and follow alternative vaccination schedules advocated by gurus like Dr. Robert Sears. Other parents go further. In communities like Ashland, Oregon, up to one-third of parents are choosing not to vaccinate their kids at all. And some advocacy groups, like Generation Rescue, argue that vaccines are no longer a public health miracle but a scourge; they view vaccines as responsible for alarming rises in certain disorders, including ADHD and autism. This is the vaccine war: On one side sits scientific medicine and the public health establishment; on the other a populist coalition of parents, celebrities (like Jenny McCarthy), politicians and activists. It’s a war that increasingly takes place on the Internet with both sides using the latest social media tools, including Facebook and Twitter, to win the hearts and minds of the public.

I guess I am not on the “latest” social media tools, but I am blogging on the topic so I figure I count as a small part of the “war”.

Reading the above I felt that “The Vaccine Wars” was not going to be the Jenny McCarthy friendly show some were expecting. Being put on the side against “scientific medicine” is usually not a good thing. Also, Generation Rescue tries to pitch itself as being “pro safe vaccine” rather than anti vaccine. I doubt they would like to see themselves as being characterized as arguing “that vaccines are no longer a public health miracle but a scourge”. Then again, times may be changing with the founder of Generation Rescue stating:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

That’s hard to fit into a “pro safe vaccine” image.

One way to tell for certain if Generation Rescue and other groups are afraid of upcoming media attention is when they start attacking spokespeople like Paul Offit (chief of infectious diseases at the Children’s Hospital of Philadelphia, and co-inventor of the RotaTeq vaccine against rotavirus). When that happened (recent blog posts on the Age of Autism, resurrecting old, incorrect information) I knew it was likely that “The Vaccine Wars” was not going to be a pro-Jenny program.

As it turns out, a video clip has been added to the Frontline website for “The Vaccine Wars”:

And, guess what, Dr. Offit was interviewed by Frontline for the piece.

The show airs on April 27th, and will be available online then as well.

Perhaps it is time for those who support the vaccine-causation idea to re-evaluate their position. I can’t tell how many times I’ve been told I need to be “open minded” about the subject. Open minded includes being willing to admit that your ideas on vaccines-causing-autism were wrong.

Let’s see—
One of the main proponents of the idea, Dr. Andrew Wakefield, was found to be unethical and dishonest
The two main theories, really the only two theories, have failed (“not even close”) in the courts
The media is moving away from giving the vaccine-causation idea much weight.

Of course, maybe I’m wrong. Maybe FrontLine will finally tell the story the vaccine-causation groups believe. Maybe they will uncover the vast conspiracies that are hiding the truth. Maybe. I doubt it.

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