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Age of Autism – Amazon file wisely

8 Sep

We all know the new Age of Autism book is coming soon. Its stocked at Amazon for example where pre-orders for the book have placed the books ranking at the heady heights of the top 100,000.

However, whats most interesting is the cover art that Messers Blaxill and Olmsted have chosen for the Kindle edition of the book. In a refreshing turn of honesty, they selected the below (click for bigger) as the cover art.

You can also see it in situ at Amazon US store.

A brave and refreshingly intellectually honest move by Blaxill and Olmsted, I think you’ll agree.

MMR vaccine damaged man

30 Aug

Jackie Fletcher is well known to many – she routinely insists the MMR jab is dangerous despite reams of evidence to the contrary. However, a panel in the UK has found that her son, Robert, was damaged by the MMR vaccine he was administered.

I nearly didn’t blog about this. Why? Well, this blogs predominant focus is autism and Robert did not and does not have autism. The panel in this case found that the MMR caused seizures and mental retardation. Its difficult therefore to get a ‘hook’ into this story. As Mike Fitzpatrick is quoted as saying in the Daily Mail:

It is a very important principle that parents should be compensated in cases of this kind…

and he’s absolutely right. Thats why the Vaccine Damage Payment Unit exists in the UK.

Like any other form of medical procedure, vaccines are not 100% safe. I can’t recall anyone anywhere ever making that claim. What they _are_ however, is very safe indeed. Robert Fletcher was injured and has been compensated. I might even agree with his mum that the amount is ‘derisory’. Robert will need full time care all of his life and £90,000 ($140,000) is nowhere near enough. However, campaigners uninterested in Robert’s day to day needs say that:

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

‘This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy and not autism, and you have to ask why.

‘Is it because the compensation would be billions?’

I very much doubt that any doctor, anywhere has ever told any recipient anywhere that any vaccine is 100% safe. If they did, they were liars.

However, this payment, far from being ‘evidence that it is not safe’ (a bizarre claim) is more like a recognition that the Vaccine Damage Payment system is working as it should. A man was vaccine damaged and was compensated as a result.

As for the claim that ‘they’ will not look at autism, this is simply incorrect. Robert, does not have autism and therefore it would be impossible in this case to look at autism. I would imagine if someone with autism was adjudged to be damaged by their MMR vaccine, Ms Tommey might have a point. As that has not happened, she does not. This kind of fear-mongering by the likes of Tommey is no doubt why the panel made the clear point:

We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

In particular, it has no relevance to the issue… as to whether there is a link between the MMR vaccine and autism.

And Fletcher goes on to claim:

Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism…

So why should that be? Why is autism apparently ‘excluded’?

Its because the science – both epidemiological and clinical clearly shows that MMR does not cause autism. And that is not the odd paper here and there. We are talking about overwhelming science that shows that the whole autism/MMR connection is simply false and was built up by one man too stupid to admit his clear errors and a mass media keen to build sensation out of this same man’s ego.

Tommey, Fletcher and all others who believe that there’s some kind of conspiracy afoot to block autism from MMR causation cases need to understand the science involved and that unless some new science is forthcoming that establishes MMR as a causative agent in regards to autism then the simple fact of applying for compensation listing the MMR as a cause of their child’s autism is _always_ going to be an immediate strikeout.

Campaigners need to start seeing this event for what it _really_ is – compensation for a vaccine damaged man – and not as what it isn’t – evidence that MMR is inherently unsafe or that theres some mysterious conspiracy to prevent autism from being linked to MMR.

Review of the Introduction of Age of Autism – the book.

23 Aug

So begins the Olmsted/Blaxill upcoming book ‘Age of Autism’.

…instead of taking Kanner’s word for it, [we decided] to learn about these previously anonymous families ourselves. We took clues from his extensive case descriptions and started uncovering the identities of the original families. Time and again, we connected the occupations of the parents to plausible toxic exposures and especially to a new mercury compound first used in the 1930s as a disinfectant for seeds, a treatment for lumber, and a preservative in vaccines. Yes, the parents’ professions were clues— but not to their obsessions or their marriages or their parenting or their genetic oddities; instead, they pointed to a strikingly consistent pattern of familial exposures to the same toxic substance.

(emphasis authors, inserts mine)

This is the paragraph that sets the authors hypothesis out. When we look at it carefully, we can see exactly what its purpose is – its purpose is to fit a set of preconceived ideas that revolve around one central disproven hypothesis – that mercury in vaccines (thiomersal/thimerosal) causes autism.

I haven’t yet read the rest of the book but I’m pretty sure what I’m going to find. To talk about that now would just be conjecture however, so lets stick to what we have here.

According to Olmsted and Blaxill, syphilis treatment, hysteria, mental illness and a variety of modern illnesses are all caused by mercury. I’m very much looking forward to reading this section too. Olmsted & Blaxill use Pink disease (a definite form of mercury poisoning which looks nothing like autism to ‘justify’ the inclusion of these illnesses in the Introduction.

Blaxill and Omsted detail how they went on to meet “Donald T.” one of Kanner’s original cases:

By any mea sure, he has fared astonishingly well. President of his college fraternity and later the Forest Kiwanis Club, a pillar of his Presbyterian church, he had a long career at the local bank, plays a competitive game of golf, and regularly travels the world. We learned how “Donald T.” went from being the first unmistakable case of autism to the first unmistakable case of recovery.

So on one hand we have the doom and gloom of Pink disease (a foreshadow of autism according to Blaxill & Olmsted) which killed hundreds and then actual autism which doesn’t seem that bad. I’ll be very interested to see how Blaxill & Olmsted narrate Donald T.’s ‘recovery’…or could it have been that Donald T. was in fact one of the first cases of autism who also either moved ‘off the spectrum’ (as a certain percentage of autistic people do) or…y’know…he simply progressed as he got older. My guess is that Blaxill & Olmsted will reveal that Donald T. had some kind of miraculous exposure to a chelating agent or multi vitamins or some form of extreme biomed. Lets see.

The whole Introduction is about 6,000 words long. I can’t possibly attempt to review the whole thing and I won’t attempt to review the whole book either. These are the sections of the Intro that caught my eye particularly. Maybe others who have access to the Intro will tackle more. One thing you can be sure of, LBRB will be here to catch and expose the errors.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Meet Roy Richard Grinker

22 May

I had a neat opportunity here at IMFAR. Last night, as I was standing on the long escalator that traverses 3 floors from the IMFAR convention area to the lobby below, I glanced backwards to peek at the person behind me who was having a pretty animated conversation on a cell phone. His name tag read, “Roy Grinker”.

He noticed the glance (which was probably more like a bit of a stare, not too inconspicuous I suppose), and politely paused his conversation long enough for me to interrupt, introduce myself, and invite him to coffee this morning. He accepted.

Most LBRB readers will know Dr. Grinker as the author of “Unstrange Minds” and as a professor of anthropology and human sciences at The George Washington University. He continues to conduct autism research, and he has a role (that we’ll learn a little more about in a minute) at IMFAR too.

He arrives to coffee right on time, and is every bit as friendly as he appears in the pictures that often accompany articles about him online. He sits down to chat with me, and LBRB readers, so…

Meet Roy Richard Grinker, PhD

LBRB: Is it correct to say that your interest in autism research is with epidemiology?

RRG: Yes, my focus has been on epidemiology, but also on doing qualitative research on how culture influences the prevalence and recognition and management of developmental disabilities.

LBRB: Tell us a little more about what you mean by how culture influences those things. Is that willingness to diagnose, etc.?

RRG: Well, we don’t know very much, right now, about autism in other places in the world. It’s, at this point, an assumption that the onset, the core symptoms, and the course is universal. We don’t know, because we don’t have data from other cultures. For example, let alone phenotypes, we don’t have prevalence data for any country in the entire continent of Africa, any country in South America, any country in Asia other than Japan (that includes south Asia), and basically, in the international realm of autism research, it’s wide open.

LBRB: So what specifically brings you to IMFAR?

RGG: I came to the meeting this time primarily to meet and talk with people from other countries, where we don’t know much autism. And we have people here from all over the world. The reason that I’m wearing this button…

[He’s wearing a button with the IMFAR name and logo that reads, “DIVERSITY AMBASSADOR”]

…is to be part of IMFAR diversity.

LBRB: International reach?

RRG: International reach. It’s not so much like the American “diversity”, it is international diversity. We reach out to all the different countries, and as an example, there’s one autism researcher here from Nigeria. With this, he knows that I’m interested in meeting him. He can feel comfortable to just walk up and talk to me, or have coffee. There are a lot of people here from other countries who may not know anyone here.

LBRB: So you’re here for that purpose?

RRG: Yes, and to talk with other people at the meeting.

LBRB: Let’s switch gears a little. What about “American diversity”? What’s your take on the science about that, at a meeting like this?

RRG: In terms of diversity, I’m really inspired, inspired because, when a diversity committee meeting was held, there were about sixty people there. Most them are actually in the U.S., working in the U.S., and are interested in the barriers to care, and the obstacles to services within minority communities.

LBRB: That sounds like it could be interesting in and of itself.

RRG: We know that the age of diagnosis for minorities in the United States is significantly higher than the average age of diagnosis for non-minorities, and that means that they’re getting services later.

LBRB: What does the research science say about this?

RRG: Research supports the premise, one, that outcomes are better if interventions are earlier, and two, epidemiologic data supports the findings that African-American and Latino children are diagnosed later, and receive fewer services. There are data (but not published data) that I’m aware of, that show that even Latino children who are insured, don’t always get services as frequently as others. It could be that they were referred, but don’t take advantage of them, or perhaps there are other structural barricades; like they have insurance, but they also have three jobs, or they live far away from the services. We really don’t understand what all the barriers to uptake of care are, in minority populations. One of the projects I’m working on now is an NIMH-funded project to look at early identification of autism in two communities where there are virtually no autism services delivered.

[Dr. Grinker did provide a little more detail about one research project in southwest Florida, among migrant worker families, as well as a project in South Africa, from where he’d recently returned].

LBRB: So these are your real research interests?

RRG: There are three strands to my research. One strand is this work I’m doing in southwest Florida and South Africa. The second strand is the continued work on the prevalence of autism in South Korea, and we hope to report the results soon there, it’s been a long study – nearly thirty thousand children (the denominator in the sample). The third strand is my book writing – I love to write books.

LBRB: Tell us more about “Unstrange Minds”.

RRG: It just came out this week in Portuguese (so it’s available in Portugal and Brazil), and it really means a lot to me to be able to provide a message that people find uplifting. The thing is, that sometimes when people talk about my book, they focus on the argument about epidemic. And I think that’s important, and I spent a lot of time in my book going through the various reasons why autism diagnoses have increased. But, for me the most important part of the book is that it doesn’t present having a child with autism (or relative with autism) as a tragedy, or something that’s horrible and devastating. Rather, it’s a life experience which is distinctive, and can be incredibly rewarding. I take that positive perspective. I’m invited to give talks, occasionally. Sometimes I’ll give a talk somewhere, and I’ll ask why they invited me. Frequently the answer is, “because you’re not angry”. There are plenty of people out there who give public presentations that have to do with their anger – the anger that the community is not answering their questions, the anger that the services aren’t there, anger that their theory of causation isn’t taken seriously. I guess some people just want to hear somebody who’s got a more positive perspective, without being a Pollyanna, and I think that’s what I offered in the book.  To me, that’s the most rewarding thing.

LBRB: Can you give a personal scoop to Left Brain/Right Brain Readers? What do you like to do in your free time? Do you have any hobbies?

RRG: I have two hobbies. Jazz piano – and I’ve played jazz piano since I was very young. I played throughout college and graduate school. I played alumni parties, that sort of stuff. And I actually still work with a really talented guy in Washington, I’m still, you know, “taking lessons”. I started when I was four, I didn’t start jazz at four, but I probably started jazz when I was about 9 or 10. My parents’ apartment building was down the street from a jazz club.

[Grinker went on to explain that he was able to spend a little time at that jazz club (back in that day), and although I didn’t take down all of the names, he quickly rattled through a list of jazz greats (such as Dizzy Gillespie) he was able to meet in his youth].

What about hobby number two? He just finished (and finished well in) the Boston Marathon.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Storm in a teacup

15 May

A piece from the Philadelphia Inquirer demonstrates how various vaccine scares begin.

Using powerful new DNA technology, Delwart’s San Francisco team detected fragments of a pig virus in GlaxoSmithKline’s Rotarix, which protects babies from a diarrhea-causing infection. The pig virus is common in pork products and is not known to cause disease in animals or humans.

…

We expected to reassure; we ended up not reassuring,” Delwart, a virologist with the Blood Systems Research Institute, said this week. “We ended up creating quite a bit of a storm.

Yet of course the usual suspects used this total non-entity of a story to further their own anti-vaccine agenda:

This “is an important wake-up call for industry and government,” said Barbara Loe Fisher, president of the National Vaccine Information Center.

How exactly isn’t explained. This is after all a story where a vaccine carries a component that *is not known to cause disease* . Neither the FDA or the European Health Agency said the vaccines containing the component shouldn’t be used. As Paul Offit said:

“You could apply this new technology to things gummed by a 6-month-old – a Cheeto, a piece of apple – and find much worse” microbes than the pig virus, Offit said. “How does it help to find things that are not known to be harmful? It’s like taking thimerosal out of vaccines. Has that made vaccines safer? No.”

Or more dangerous.

We *have* to start getting over our collective heebie-jeebies every time something perfectly safe is found in a vaccine and start realising that the people who are advocating that we _do_ have an attack of the heebie-jeebies are those who have a single item agenda – promoting anti-vaccineism.

Review of Frontline’s The Vaccine War

29 Apr

The Vaccine War has aired. Judging by the responses, one might consider it a success. Pro vaccine groups like Every Child By Two were telling people to watch it. The Autism Science Foundation “highly recommends” watching it. On the other side, the organizations represented by the Age of Autism blog (Generation Rescue, the National Autism Association, SafeMinds, the Autism Research Institute and TACA) are very upset. Jenny McCarthy has gone to the Huffington Post with her side of the story, as has Dr. Jay Gordon, whose entire interview was cut from the program.


An unofficial (and incomplete) transcript is here.

That all said, I both appreciated the program and had my fears realized. In this case, my fears were that people would be given a platform to spread misinformation. And it happened. Jenny McCarthy and others made statements that were, in my view, misinformation. But, I appreciated the fact that Frontline took the time to counter much of the misinformation with actual experts discussing real science.

Frontline describes the show as:

In The Vaccine War, FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools — including Facebook, YouTube and Twitter — and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.

I think the show accomplished this. There was some cost in terms of allowing Generation Rescue’s misinformation message in TV once again. But, this time, this time they are the problem.

If you watch the introductory 2 minutes of this video, you will get some idea of how the show is presented

Parents, both pro vaccine and not, activists, public health workers and researchers like Dr. Offit telling various sides of the story, with the narrator tying it together.

Narrator: Tonight on Frontline: They’re hailed as medicine’s greatest triumph: conquering smallpox, diphtheria, polio and more. But today, some Americans question if all those vaccines are worth the risk.

The show is in four segments. The titles for these segments should, again, give you an idea of the tone of the show.

1. A visit to Ashland, Oregon. In some American communities like this one, parents are hesitating to vaccinate their children, despite their doctor’s advice.

2. Eroding faith in vaccines. Skeptics target Paul Offit, inventor of the rotavirus vaccine. And many parents are wary of vaccines because they no longer see the diseases.

3. Fearing vaccine risks, especially autism.. Vaccine skeptics like celebrity Jenny McCarthy have organized a community of parents concerned about a vaccine-autism link.

4. The science that launched the movement. A British doctors ’98 study theorized that the measles vaccine causes autism. Soon vaccine critics began questioning other additives in vaccines.

5. What epidemiological studies reveal. No link is found between autism and the MMR shot or thimerosal. And the British doctor’s ’98 study is discredited, but critics demand more studies.

6. Vaccines, what’s at stake. The debate goes beyond the medical risks-benefits: it involves parents’ rights to make choices v. the needs of the community.

In the first segment, they interview a pro-vaccine mother in Ashland. She notes that if there is an outbreak, the response may get contentious. It may get ugly.

Beyond the direct human cost, one of my worries: how much blowback will there be to the autism communities? How much blame will be applied and what will it cost?

As part of the introduction, The Vaccine War discusses the story of Desiree Jennings. She was a Washington Redskins cheerleader who claimed dystonia as an adverse reaction to her vaccine. Her story broke out not through the TV news show that covered her story, but through YouTube. Jenny McCarthy is quoted about how Generation Rescue took Ms. Jennings to see Dr. Rashid Buttar and how chelation and HBOT cured her.

What makes the Desiree Jennings story even more interesting is the possibility that the vaccine-injury/dystonia story may not be real. As noted on LeftBrainRightBrain, Ms. Jennings was later followed by cameras from a TV program and shown to be driving and walking normally.

The possibility that Generation Rescue is using the story even though it may not be true was probed by Frontline. Here is a part of an interview from Frontline with one of Generation Rescue’s founders:

[Frontline]Talk about the viral spread of an image over the Internet, like [Redskins cheerleader] Desiree Jennings’ flu shot story, for example.

It’s remarkably powerful what an image or an idea can do in today’s day and age, and for a group of parents who feel completely outmatched — because think for a moment about who our enemy is; our enemies are the largest pharmaceutical companies on the planet, making billions of dollars in net profit a year — you’d think that we could never compete with that. But an idea can transmit itself powerfully and very cheaply for millions to see.

So in the case of Desiree, here you have an image of this beautiful woman who’s been severely disabled that literally tens of millions of people view overnight, and imagine the chilling effect that has on a flu vaccine that she attributes as the cause of her condition. It’s remarkably powerful.

[Frontline] Does it matter whether it’s true or not?

Truth always bears out in the end, so I’m a firm believer in that. Are there moments in time where truth is exaggerated or expanded? Absolutely. But truth bears out in the end. …

Perhaps I missed it, but it appears to this reader that Frontline’s question was completely dodged. Does it matter whether the Desiree Jennings story is true or not? I think so. But what seems important to Generation Rescue is not the truth of the story, but the fact that it is a gripping narrative that sells their message.

The Vaccine War has a rather large cast, if I may call them that. Parents both pro and anti vaccine, a writer from Ashland who is anti-vaccine, Paul Offit, bioethicist (and polio survivor) Arthur Caplan, Jenny McCarthy, Anthony S. Fauci (immunologist from NIAID), Cynthia Cristofani (pediatric intensivist), Alvaro and Myrian Fontan (a family who almost lost their daughter to whooping cough) and J.B. Handley, Barbara Loe Fisher–plus more.

In some ways, “The Vaccine War” takes the same approach that Dr. Offit uses in books like “Autism’s False Prophets”. Let the skeptics make their points, ask their questions, then respond. Sometimes this is quite jarring.It is tough to sit back and listen to someone spread information and wait for the response.

The Vaccine War is well researched. Even though people like Jenny McCarthy got some air time for their ideas, they are quite upset about the Frontline episode.

Perhaps I am the only one who will find this ironic. In response to this episode, one which discusses how groups like Generation Rescue use social networking on the internet to get their message out, they are taking to social networking. Twitter, blogging…

As noted above Jenny McCarthy and Dr. Jay Gordon have taken to the Huffington Post to respond to the show. the Age of Autism is being very critical. They are attempting to “poll mob” the Frontline website. (humorous aside–they haven’t figured out that the survey doesn’t record their answers. It only shows you how your responses compare to the actual survey.)

If you have friends, family who are wondering about the vaccine/autism “controversy”, this is a good show to refer them to. It gives both sides. It allows people like Jenny McCarthy to give her viewpoint–and it gives the response.

PBS Frontline: The Vaccine War

16 Apr

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.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide

Barbara Loe Fisher’s lawsuit against Paul Offit dismissed

11 Mar

If you recall, last October Wired Magazine had an article: An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All. Barbara Loe Fisher of the self-named National Vaccine Information Center took issue with a section of that article and sued Dr. Paul Offit. The complaint is here.

Ms. Fisher was suing Dr. Offit, Amy Wallace (who wrote the story for Wired) and Conde Nast Publishing (who publish Wired).

For background, you can read Respectful Insolence Suppression of speech through legal intimidation, anti-vaccine edition: Barbara Loe Fisher sues Dr. Paul Offit, Amy Wallace, and Condé Nast for libel, as well as One possible reason why Barbara Loe Fisher chose to sue Paul Offit in Virginia?

Autism News Beats “Barbara Loe Fisher: “Not a person to be believed””

SkepticBlog (Steve Novella) Another Libel Suit – This Time Against Paul Offit ,

And Terra Sigillata’s Paul Offit, Amy Wallace, and Conde Nast being sued by anti-vaccinationist

The complaint centers around this section of the Wired story:

Paul Offit has a slightly nasal voice and a forceful delivery that conspire to make him sound remarkably like Hawkeye Pierce, the cantankerous doctor played by Alan Alda on the TV series M*A*S*H. As a young man, Offit was a big fan of the show (though he felt then, and does now, that Hawkeye was “much cooler than me”). Offit is quick-witted, funny, and — despite a generally mild-mannered mien — sometimes so assertive as to seem brash. “Scientists, bound only by reason, are society’s true anarchists,” he has written — and he clearly sees himself as one. “Kaflooey theories” make him crazy, especially if they catch on. Fisher, who has long been the media’s go-to interview for what some in the autism arena call “parents rights,” makes him particularly nuts, as in “You just want to scream.” The reason? “She lies,” he says flatly.

“Barbara Loe Fisher inflames people against me. And wrongly. I’m in this for the same reason she is. I care about kids. Does she think Merck is paying me to speak about vaccines? Is that the logic?” he asks, exasperated. (Merck is doing no such thing). But when it comes to mandating vaccinations, Offit says, Fisher is right about him: He is an adamant supporter.

Ms. Fisher argued:

“If defendants are correct, Plaintiff Fisher is not a person to be believed and because her stock and trade is information and opinion derived from it, she has no business worthy of acceptance and use, honesty being the foundation of every such reliance.”

The court’s decision is online.

The decision is quite clear. Ms. Fisher has no case against Dr. Offit, Amy Wallace or Conde Nast.

In this case, the article’s quotation of Defendant Offit’s comment that Plaintiff “lies” cannot reasonably be understood to suggest, as the Complaint alleges, that Plaintiff is “a person lacking honesty and integrity . . . [who should be] shunned or excluded by those who seek information and opinion upon which to rely.” Rather, the context of the remark – in a lengthy article describing an emotional and highly charged debate about an important public issue over which Defendant Offit and Plaintiff have diametrically opposed views – plainly signals to readers that plainly signals to readers that they should expect emphatic language on both sides and should accordingly understand that the magazine is merely reporting Defendant Offit’s personal opinion of Ms. Arthur’s [Barbara Loe Fisher’s] views.

In my opinion, this case was an attempt to shut Dr. Offit up, restrict his right to free speech by forcing him into costly litigation. In my opinion, the key section of the Wired article was this paragraph:

[Dr. Offit], meanwhile, still rises every morning at 4 am and heads to his small, tidy study in a spare bedroom. Every morning, he spends a couple of hours working on what will be his sixth book, a history of the anti-vaccine movement. Offit gets excited when he talks about it.

I wish Dr. Offit well in his next book. I thank him for standing up for free speech. In my view, Barbara Loe Fisher and the organizations that ally with her are very dependent on the very right that Dr. Offit just defended. They have the ability to voice opinions which are in direct contradiction to established science. I would think they would cherish the first amendment to the U.S. Constitution.

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

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