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MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science

6 Sep

In a commentary for the Mayo Clinic Proceedings, Gregory A. Poland, MD writes about MMR and autism. In case you don’t get the idea of his stance from the title of the article, MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science, it starts out with a quote:

Nothing is more terrible than to see ignorance in action.

Johann Wolfgang von Goethe

I’m sure people will counter that they are very “smart” and “well educated” and, therefore, not ignorant when they promote the MMR/autism notion. Is it ignorance, willful ignorance, bias, dishonesty, some mix or something else entirely that is behind the perpetuation of the idea? I don’t know. On a very real level, it doesn’t matter. What matters is the fact that the MMR hypothesis was wrong and that those who continue to promote it are causing a very real danger to society.

That said, here are Dr. Poland’s views in the introduction to his paper:

It is a truism that acting in one’s perceived self-interest is not always in one’s self-interest. Perhaps nowhere is this truer in contemporary public health than for the issue of the measles-mumps-rubella (MMR) immunization and persistent fears about a possible connection with autism. Although each of these 3 diseases had been controlled in the United States with the widespread use of the MMR vaccine, in the past decade those gains have been slipping. Even though the United States has had fewer than 50 measles cases per year during the past decade (mostly imported from other countries), 156 cases have already been identified in the first 6 months of 2011. 1 European countries such as England, Wales, Italy, France, Spain, and Germany are also experiencing substantial increases in measles outbreaks.

Why should we be concerned? Measles is the most transmissible human disease known. Even with modern medical care, approximately 1 of every 3000 infected persons die, and many more are hospitalized or otherwise harmed as a result. Population coverage (herd immunity) needs to be in excess of 96% to prevent outbreaks. In addition, measles is a disease for which eradication is both possible and planned, a goal that obviously cannot be met given current vaccine coverage levels.

This predictable sequence of falling coverage levels, followed by outbreaks of disease, has occurred because of decreased public confidence in the safety of the MMR vaccine. In large part, this has resulted from incorrect assertions that the vaccine plays a role in the development of autism, an idea promoted by Andrew Wakefield. No credible scientific evidence, however, supports the claim that the MMR vaccine causes autism, and indeed, national medical authorities and scientific professional societies have unanimously …

This article is commentary (i.e. not a research article), but there are some good points and questions made:

Why in the face of nearly 2 dozen studies and every scientific committee rejecting such an MMR-autism connection does this myth persist?

As expected, he notes the celebrity aspect of the vaccine-causation notion. He also discusses the recent paper in the PACE Law Review.

Under “Moving Forward”, Dr. Poland writes:

At some point, a point I believe we have well passed, the small group of people who claim such connections, who have no new or credible data, and for which their assumptions and hypotheses have been discredited must simply be ignored by scientists and the public and, most importantly, by the media, no matter how passionate their beliefs to the contrary. Such individuals are denialists at best, and dangerous at worst. Unfortunately, the media has given celebrities who comment on an autism-MMR link far more attention than they deserve, and the public, unfamiliar with the background science, has confused celebrity status with authority. Such a phenomenon has not been lost on those wishing to continue the discussion. As an example, J. Hanlon, cofounder of Generation Rescue (an organization that advocates for an autism-MMR vaccine link) commented, in regard to the finding that both Andrew Wakefield and his assertion of a connection between autism and MMR vaccine had been discredited, that to those who believe vaccines cause autism “Andrew Wakefield was Nelson Mandela and Jesus Christ all wrapped in one.”

Prediction: we will hear all about how this commentary is obviously worthless because the author didn’t correctly cite J.B. Handley. If you are wondering what I mean, read again, Mr. Handley is referred to as J. Hanlon. I wish the author hadn’t made that mistake as such small errors are exploited in exactly this way. But, at the same time, this puts some perspective on the situation regarding Mr. Handley. He is a well known name in a very small community. He has become one of the go-to people for comments critical of vaccination (as in the Jesus Christ/Nelson Mandella article).

Prediction 2: Dr. Poland’s article will be called an attempt at censorship (see the conclusion below). Probably with no sense of irony by the same people who recently stated that Autism Speaks should “Shut up, shut down and go away.”

Prediction 3: People will still refuse to see how strange the “Nelson Mandela and Jesus Christ” comment read to the majority of readers. OK, I am predicting the past here, but I expect this to go forward too. Dr. Poland didn’t pick this quote to place Andrew Wakefield in good light.

That all said, I agree with Dr. Poland. It is well past time for the MMR story to be set aside. Just because there are adherents to the idea doesn’t mean that news organizations need to give it false balance.

Dr. Poland concludes his article with a simple summary: the MMR/autism question has been investigated closely and no link is found. The decision to forgo immunization based on this fear is not without danger. Those who promote the MMR/autism link in the face of all the evidence are not working for the public good:

For anyone adhering to the scientific model of discovery, experimentation, and evidence, the trial is over and the jury back—there is no known scientific association between receipt of MMR vaccine and the subsequent development of autism. Making the decision to not immunize children with the MMR vaccine because of fear of such an association —rather than credible scientific evidence—places children and others at great risk as current measles outbreaks in the United States and Europe illustrate. Vaccine nihilists who continue to claim such associations are simply wrong, and they pedal an agenda other than for the public good. At this point, the antivaccine groups and conspiracy proponents promoting such an association should be ignored, much as thinking people simply ignore those who continue to insist that the earth is flat or that the US moon landing in 1969 did not really occur

He concludes simply but strongly:

There is no law against being foolish, nor any vaccine against ignorance; however, in the meantime the health of millions of children in the United States and worldwide is being placed at unnecessary and real risk through continued deliberate misinformation and discredited unscientific beliefs, and that should be a crime.

Why are some autism groups silent on the Combating Autism Reauthorization Act?

29 May

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.

PaulOffit.com, a tempest in a teapot

28 May

A month or so back, I stepped forward to state that I, Matt Carey, have been posting as Sullivan here on Left Brain/Right Brain. Mr. J.B. Handley of the Age of Autism blog and Generation Rescue had made a commitment to transfer the domain pauloffit.com and to stop commenting on Dr. Offit should it be demonstrated that Sullivan was not Bonnie Offit, wife of Paul Offit.

The domain was not transferred until yesterday. In the time that has transpired, tempers have raised. The last comment in the string below should be taken as a sign of the frustration level and not as an opening for critique, in my opinion. I considered leaving it out for that reason.

I generally do not like to post emails. However, as Mr. Handley has already posted some of these exchanges, I feel that it is appropriate to post the full exchange at this time. Here are the emails which I have found in my inbox. If any are missing, I feel sure that will be brought to my attention and I will add them. I do not have access to the emails or other communications between Mr. Handley or his agent and the domain registration company register.com. I can’t tell if the request to email Dr. Offit was made or not. I can’t tell if register.com bungled the communication. I just don’t have that data.

At one place on the web (at least) I commented that Mr. Handley emailed me first. That he did not do. He made the offer to complete the deal on his blog.

April 29:

Matt:I’ll take care of it early next week, thanks for the guidance.

On a separate note, I wanted to ask you to submit to an interview via email for publication at AoA. I will generate the questions, you answer them, and I publish them in totality without editorializing. The topics will exclusively cover the science of autism, known and unknown, and include prevalence, vaccines, and medical issues.

My reason for asking is that you are really the first well-educated parent (although Harvey Mudd is no Stanford 🙂 I have encountered on the other side of this topic who doesn’t seem to be a nut job (Kevin Leitch, Autism Diva, etc.).

I honestly do not understand how you have looked at the same published research I have looked at and concluded that vaccines have been exonerated from causing a majority of today’s autism. I really, truly do believe that the large-scale epidemiological studies that are constantly cited as “proof” are garbage, have yet to ask the right questions, and are typically managed to produce a previously determined outcome. I believe Allison ISnger and Paul Offit consistently and knowingly misrepresent what has been studied in public statements, and it really drives me nuts.

As a Ph.D. scientist, I think your answers will be thought-provoking. I’d like to ask you pointed questions and let you answer them. Your writing has shown me you aren’t a spin doctor and will answer things like a scientist, not a partisan. Despite my delight in provoking people I consider to be idiots (Orac), I actually do enjoy debating this issue, because my only genuine interest in all this is helping my son. If it really wasn’t the antibiotics and vaccines that got him, I’m wasting a hell of a lot of time and money treating the wrong things.

My request for the interview has nothing to do with Offit’s website, so no conditions here, I just hope you’ll consider the interview for its own sake. There are a lot of extremely smart parents on our side of the table, and I’d like to see the different reactions a thorough and measured interview with an “opposition figure” brings.

Ball is in your court,

JB Handley

On Apr 29, 2011, at 2:36 PM, Matt Carey wrote:Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

Matt Carey

May 2nd:

Are you going to take 5 months to respond again?JB Handley

May 5th:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JBJB Handley

May 13th: I added this comment to the blog post:

He replied that he would “take care of it early next week”That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

May 13th:

Matt:The site was offered to Paul Offit. It was also unlocked. After 3 days, apparently no one had claimed it, at which point anyone could. I can’t make Offit take it, maybe he didn’t so you guys could say I re-traded. Whatever, I did my part. Offit could confirm he received an email offering it to him. Don’t bother writing back, I have conceded I was wrong, and honored my end of the deal, JB

My email to owner of domain:

On Mon, May 2, 2011 at 10:23 PM, JB Handley <[redacted]> wrote:

Hey

– Give the site back to Paul Offit, or at least give him the right to register the domain name. Can you do that?Please email the right to the domain to: offit@email.chop.edu

It’s a long story, but basically I lost a bet. JB

From: [redacted]
To: JB Handley <[redacted]>
Subject: Re: Do you have anytime in the next few days?
Date: May 3, 2011 9:32:08 AM PDT
Hi JB -Step 1 of 3 is done:

The http://www.pauloffit.com site has been updated.

The domain is unlocked and anyone can request a transfer. Once that request is submitted, you’ll get an email at “[redacted]” to confirm that transfer. Additionally, I used Register.com’s transfer process, using the “chop.edu” email address below that you gave me.

– [redacted]

JB Handley

May 14th (comment posted on a few blogs, including here)

Todd:Dr. Offit is lying, as usual. On may 3rd, Dr. Offit received an email from register.com offering the transfer of the site to him. After 72 hours, Dr. Offit had not claimed it and the site was available to anyone to register. The email where the register.com transfer was sent was provided to me by Matt Carey, who directed me here to find it:

I even sent Mr. Carey a note on May 6th advising him of that and offering to interview him for AoA, in the spirit of closing the gap between us, to which he has never responded, here’s the contents of that email:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JB

Someone is lying to you, JB Handley

May 15th:

Matt:Below is completed transfer. I sent Offit first notice on May 3rd, 12 days ago – FUCK YOU for publicly saying I didn’t!!

“After Mr. Handley emailed me I replied that he could transfer the domain directly to the Offits. He never contacted them.”

When I say I am going to do something, I do it.

And, you don’t even have the courtesy to respond to my emails or interview request. Man up,

JB Handley

Begin forwarded message:From: “J.B. Handley” <[redacted]>
Date: May 15, 2011 6:02:29 PM PDT
To: “’[redacted]’” <[redacted]>
Subject: FW: Register.com – Transfer of Registrant is completed

J.B. Handley
——-Original Message——-
From: support@register.com [mailto:support@register.com]
Sent: Sunday, May 15, 2011 1:01 PM
To: J.B. Handley
Subject: Register.com – Transfer of Registrant is completed

Dear Valued Customer,

This email serves as a notification that the Transfer of Registrant for pauloffit.com from JB Handley to Paul Offit has been confirmed and processed successfully. Please note that the services associated with the domain are not transferable when a Transfer of Registrant takes place, any service previously in place for the domain must be repurchased if you wish for it to be reinstated.

If you have any further questions about this process and wish to consult with a Customer Service Representative you can contact us 24 hours a day, 7 days a week, by submitting a request online at http://help.register.com/cgi-bin/register_help.cfg/php/enduser/ask.php or by contacting one of the numbers below.

Thank you for choosing Register.com.

Note that this last email was sent just yesterday. The previous one was sent Friday. I was at IMFAR then, and have been either at the conference, traveling, or getting caught up at work since.

I can be pedantic and stand by my statement on May 13th: Did Mr. Handley contact Dr. Offit in early May? No. Are there other inconsistencies in the above set of exchanges? Yes. Is there value in stressing that point? No.

Mr. Handley chose a third person, who chose register.com to contact Dr. Offit. Is it possible that Mr. Handley and whoever was running pauloffit.com are not aware of that “unlocked” doesn’t have to mean “available for anyone to register”? There should be a key to effect the transfer. There’s a lot of chance there for the ball to be dropped. Neither Mr. Handley nor myself has access to Paul Offit’s email to confirm what did or did not get through. We can say that Dr. Offit has commented that he was not contacted. Given his interest in obtaining this domain, I don’t see the need to question that he would have acted on an email if it came.

I think many people, myself included, thought that a third person had grabbed the domain and that it was lost. At one point I did try to check on the registration status of the site, and I found that it was not available. If it did stay in Mr. Handley’s (or his agent’s) possession this whole time, it strikes me odd (to say the least) that the site was redesigned given the commitment that Mr. Handley made to stop commenting about Dr. Offit.

Earlier today I participated in a chat session with someone at register.com. I was still a bit confused about everything, so I would ask better questions if I had another opportunity. For one thing, I was under the impression that the site had been transferred to someone other than Mr. Handley (or his agent) and Dr. Offit. Here is that exchange:

Rob A.: Hi, my name is Rob A.. How may I help you?
Matt Carey: I’m looking for information about how register.com transfers domains
Matt Carey: I was involved in a recent transfer. The original owner of the domain set up the transfer by email with your team, who contacted the person to receive the domain. When no response was received by register, the domain was unlocked and someone else took the domain.
Matt Carey: Is this standard practice with Domain? It seems odd that the domain would be just unlocked
Rob A.: Could I get the dom,ain name in question pelase?
Matt Carey: Here is what I was told: the recipient “…received an email from register.com offering the transfer of the site to him. After 72 hours, [the recipient] had not claimed it and the site was available to anyone to register. ”
Matt Carey: pauloffit.com
Rob A.: Thank you
Matt Carey: The domain is now, finally, been transferred to the correct person. But originally, we were told that the domain had been unlocked and transferred to a third party.
Rob A.: I see that the transfer was successful from one account to the other
Rob A.: That may have been send in error as I do not see that in our system
Rob A.: Sorry
Matt Carey: Is it the policy of Register.com to simply unlock a domain after 72 hours?
Rob A.: no.
Matt Carey: Is it possible to tell me if a third party did posses the domain for a short period? Someone other than Mr. Handley (the original owner) and Dr. Offit, the current owner?
Rob A.: Not according to our system
Rob A.: It went from one account to the other
Matt Carey: Thank you very much for your time.
Rob A.: Thank you for visiting Register.com – Don’t just make a website – Make an Impact!
Rob A. has disconnected.

Are Mr. Handley’s statements accurate? No. For one thing, the site was not left open for anyone to register. Is that a lie? Not in my book. Let’s just say that Mr. Handley and his agent didn’t understand how domain registration transfers work. I certainly didn’t a few days ago.

Mr Handley stated on his blog: “I kept a screen shot of the confirmation of emails sent from register.com.” He has not shared those with me.

Mr. Handley is correct that I should have responded to his request for an interview. For that, I do apologize. I could brush it off as being due to Mr. Handley’s demeanor which, frankly, I do not care for. However, that would be blameshifting. Crafting a response was not straightforward as it may seem. I try to keep the exchanges respectful, if sometimes critical. Given that this is overdue, let me post my response here:

Mr. Handley,I appreciate your offer of an interview with your blog. I believe that in my many posts I have made my positions quite clear. It is very difficult to craft a response that would not come across as a slam. Suffice it to say, I would not willingly add my name to the Age of Autism blog. If at some point in the future, the focus of the Age of Autism were to shift to one which actually advances the needs of children like mine, and the adults whom I see as allies, I would be happy to consent to an interview. Until that time, I consider this matter closed.

Matt Carey

To respond to the obvious criticism: I have still not responded to Mr. Handley by email. I leave it up to you, the reader, to tell me if you would respond to the emails of the tone above. I feel quite comfortable with my decision.

This response by Mr. Handley puts a major damper on the optimism I felt coming from IMFAR. I spent a lot of time with people, a few of whom are on “the other side of the fence”. It was very refreshing to sit down with people, disagree and still feel kinship for those people. There was at least one person whom I wish I had approached and spoken to, if only to express the fact that I hold that person in high regard, even though we have disagreed. But, on the whole, I came away with something I didn’t expect: a sense of hope. It isn’t about people agreeing. It’s about people of differing opinions working as allies. It is also about accepting the science. Accepting the facts as they come in. It’s also about not causing harm to the autism communities and to public health.

Note: this article originally ran on May 17th. In our transition to a new hosting service, the post was lost. I’ve copied it over from the Google Cache version.

Four Somali children die of measles

5 May

Dr. Abdirahman D. Mohamed, the chief of staff at Axis Medical Center in Minneapolis, said last month he knew of four unvaccinated Somali children who had died from measles.

Source

This appalling news comes hot on the heels of anti-vaxxer conspiracy theorist Andrew Wakefield’s visit to the Somali community in the US to promote his fraudulent anti-MMR ‘studies’. Generation Rescue has also attended to the Somali community in Minneapolis.

Antivaccine groups have noticed. In November, J. B. Handley…wrote an open letter to “Courageous Somali Parents.”

He warned them not to trust the state health department and suggested they slow down their children’s shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

All these people and groups should now reap the harvest of what they have sown. Death. Preventable death.

An apology to Mr. J.B. Handley

29 Apr

As Kev points out I chose this week to out myself. The title for my talk at IMFAR has been posted online and it was time. As part of Kev’s post, he noted that Mr. Handley made some commitments on condition that I step forward. I doubted that Mr. Handley would make good on his commitments, even going so far as to write that I didn’t think he had the integrity to do so. For those comments I offer a sincere apology. I was wrong.

On important point to make here. It wasn’t JB Handley or a regular of the Age of Autism who outed me. It was former members of the autism hub blogs in the comments for the “Bonnie Offit” piece by Mr. Handley.

On the other hand, one person with whom I have disagreed over the years figured out my name long before any of this “Bonnie Offit” mess. Rather than out me, that person emailed me with the information of how I was exposing myself. It is that person’s integrity that is the biggest lesson I have learned from these events.

Note, 5-12-2011:

Mr. Handley had made two clear commitments. (1) that he would hand over control of the domain “pauloffit.com” and (2) that he would cease his discussions against Dr. Offit. I emailed Mr. Handley:

Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

He replied that he would “take care of it early next week”

That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

Sullivan outs himself

27 Apr

Back in 2010, Age of Autism’s Inspector Clouseau, summed up the following about Sullivan:

1) Female
2) American
3) A doctor or scientist
4) Not the parent of an autistic child.
5) Is actually Paul Offit’s wife Bonnie.

And followed up with this promise:

If you can produce a dad with a child with autism with a remarkable grasp of the medical and scientific literature who blogs under the name Sullivan, a man who has an inordinate grasp of the details of your husband’s patents, lawsuits, published studies, and web habits, I will make sure that the pauloffit.com website is given to you and your husband for good.

In fact, if you can produce this father, I promise to never, ever publicly write about or utter the name “Paul Offit” again.

As blogged by Sullivan, he will be attending IMFAR as a contributor:

I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.

The abstract in question is:

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey. M. J. Carey

M.J. Carey, of course being LB/RB’s own Matt Carey.

So, now we turn back to JB Handley – are you ready to both hand over both the domain and your word to never mention in word or speech the name Paul Offit again JB?

People can’t change?

22 Apr

Today, JB Handley, founder of Generation Rescue became the latest person at Age of Autism to abuse a man with a psychiatric disorder.

Shouldn’t we celebrate that Mr. Mnookin claims to be sober? Sure we should. Beating a heroin addiction is a laudable outcome. That being said, I sure wouldn’t hire Mr. Mnookin in one of my companies, let him watch my kids, or go to him for parenting advice. He was a garden-variety junkie who stole money from friends and family, sorry.

Give with one hand, take with the other.

I don;t ever seem to recall such vitriol for another former heroin addict. In fact, for _this_ former heroin addict, JB Handley said:

I wept when I read RFK Jr’s piece yesterday on the Huffington Post…

As far as I can tell, the only difference between Mnookin and Kennedy is that Mnookin is man enough to discuss his addiction up front and personal.

JB Handley and his ilk idolise Kennedy because he’s on their side. If Seth Mnookin had written a very different book, you can bet that his former addiction wouldn’t count for a damn thing. I wonder if JB would hire Kennedy, let him watch his kids or go to him for parenting advice? Because according to JB’s standards, Kennedy is just another garden variety junkie.

I believe both Mnookin and Kennedy deserve credit for fighting a fight that JB Handley can neither envisage nor learn from. What neither of these two men deserve is to be judged on their past. I look forward to reading an AoA article on Seth that describes what is wrong with his writings rather than what he used to do as a young man.

Reconsidering the Nature of Autism

8 Apr

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”.

Somali community start to fight back against Andrew Wakefield and Generation Rescue

26 Mar

Taken from http://www.startribune.com/lifestyle/health/118686794.html

Hodan Hassan of Minneapolis understands why some parents are afraid to have their children vaccinated. Until recently, she was one of them.

But today, Hassan will be one of the featured speakers at a Somali community forum designed to allay fears about vaccines in the midst of a measles outbreak.

“[I] read about how the world used to be without the immunization program,” said Hassan, who has four children, including a daughter with autism. “This generation doesn’t understand the benefit, and the importance, and how lucky they are having an immunization program in place.”

So far, 11 cases of measles have been confirmed in Hennepin County since February, five in Somali children who had not been vaccinated. Experts say that vaccine rates have dropped in the Somali community, along with other groups, because of unfounded fears of a possible link to autism.

Now, Somali physicians and state health officials have joined forces to counter what they say are widespread misconceptions about vaccine safety, which has left many children vulnerable to preventable diseases. The concern has grown in the last two years, since a Health Department study confirmed that there were an unusually high number of Somali children in the Minneapolis schools’ autism program.

In Hassan’s case, she stopped vaccinating her children after she learned that her daughter, Geni, now 6, had autism. At the time, she said, she was desperate for answers. Medical experts could not explain what caused her daughter’s condition, a severe communication and behavior disorder. But she quickly learned about the autism activists who blame the vaccines, in spite of medical assurances to the contrary. She began reading their books and attending their conferences, she said, and the fear took hold.

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

‘I was shocked’

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. “I was shocked when I found out people used to die [of measles],” she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

“If we could all go back in time, we would have appreciated it,” she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday’s gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn’t believe parents are worried about the measles outbreak.

“They’d rather have them get the measles than deal with the effects of unsafe vaccines,” said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Health officials warn that measles is highly contagious and extremely dangerous. So far, six people have been hospitalized in the current outbreak, most of them young children. All are said to be recovering.

This week, Hassan circulated an e-mail inviting members of the Somali community to tonight’s forum at the Brian Coyle Center in Minneapolis.

“Our community has been misled about MMR causing autism,” she wrote. “Vaccines don’t cause autism and the benefit [outweighs] the risk.” She added: “We are very much against an unlicensed doctor to make our community his scapegoat.”

Perusing the IRS form 990’s for some autism organizations

18 Mar

How big are more outspoken autism organizations? How much do they support research? How much do they pay their executives? This became a big question about a year ago when it became public how much Autism Speaks pays their top people. Since the 2009 form 990 (IRS forms from non-profit organizations) are now public, I thought I’d take a quick look at some of the organizations out there. More importantly, we are in a tough financial time and charities get hit hard in recessions.

Autism Speaks

revenue: $45.5M down from $66.4M
Expenses: $43.6M down from $73.1M
Assets: $10.8M up from 8.9M

30 people listed as officers/directors.
14 people listed with salaries >$100k

Total salaries paid–$16.5M

Program services expenses:
$17,362,551 in research
$10,238,612 in awareness
$814,016 grants to families
$2,276,703 in other program service expenses

ratio of salary to program service expenses $16.5M/$30.7M=0.53

For those who want to know, Geraldine Dawson’s salary is $409,382. Very high, but also not as high as was reported last year. The previous year included many one-time expenses involved with her move to Autism Speaks.

Generation Rescue:

revenue: $641K down from $1,190k
expenses: $843k up from $745K
net assets $213k down from $445k

Salaries:
Stan Kurtz is now listed as “former” president. Salary: $129,167
Candace MacDonald: $100,000 in salary. Listed as president.

They spend about $19k on their website/year
biggest single expense (other than salary) is marketing, at $169k.

they list an expense of $729,340 for “GENERATION RESCUE PROVIDES EDUCATION, MEDICAL ASSISTANCE AND TREATMENT FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS, DIRECTLY IMPROVING THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED”

They spent $23k on research.

ratio of salary to program expenses: 364,686/729,340=0.50

The ratio of salary to program expenses is basically the same as for Autism Speaks.

National Autism Association (NAA)

revenue: $542K down from $595k
expenses: $696k up from $570K
net assets: $62K down from $216

no salaries for organization officers listed

15 people listed as officers/etc. (including Katie Wright, Dierdre Imus)

expenses:
$434k in “building a solid foundation” for the NAA. Public awareness, etc.
$75k in crisis support–direct support to families in case of disasters, deaths, etc.

ratio of salary to program service expenses: 134,511/509,232=0.26

The ratio of salary to program services is much lower than for Generation Rescue or Autism Speaks.

SafeMinds

revenue: $196K down from $24k
expenses: $126k down from $179K
net assets: $187K up from $117k

no salaries for organization officers listed
14 people listed as officers/members

Expenses
$41K in research
$31k in website/PR
$23k for conferences
$15k to the Age of Autism
$29k to Thoughtful house

ratio of salary to program service expenses: 0/96,016=0.0

This is the only group with a zero ratio.

TACA (Talk About Curing Autism)

revenue: $841K up from $780k
expenses: $912k up from $847k
net assets: $477K down from $532k

4 people listed as board members/etc
One compensated, at $44k/year

expenses
$349,565. Meetings/conferences/seminars for parent education
$135,753. Print and electronic publications
$99,472. direct financial support to families

ratio of salary to program service expenses: 320,442/586,12 4=0.55

This is similar to Autism Speaks and Generation Rescue.

Checking a few figures.

First, it was claimed a while back that the National Autism Association had thousands of dues paying members. The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members.

Second, the $15k payment to the Age of Autism intrigued me. Age of Autism portrays itself as an autism organization in advocacy efforts. They are not, however, a charitable organization. The Age of Autism is a limited liability corporation registered to Dan Olmsted. Because of this, financial records are not public. But we can attempt an estimate with public information:

Age of Autism has 4 sponsors listed on their website. (SafeMinds, Generation Rescue, the National Autism Association and TACA). Assuming that all 4 are paying $15k per year, this would mean $60k/year from sponsors. In addition, they received advertising revenue. A link on the top of the Age of Autism blog takes you to where you can see advertising rates. AoA has two types of ads, leaderboard ads (at $10/day) and sidebar ads (varying from $25/week with no image to $250/week for a large ad with picture). They have no leaderboard right now, but 6 sidebar ads. Using an estimate average of $210/week based on the sizes I see (and the fact that this divides easily by 7), that gives $30/day per sidebar. I am assuming that the ads for the books are gratis. If they fill the leaderboard ad, AoA could be getting $190/day from advertisements. 365 days of that gives $69,350. Together with sponsorship, the Age of Autism is bringing in an estimated $129,350 a year. They have to pay for hosting, but they also get donations. They do not specify how the money is distributed.

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