AFP author--Day 4

Thanks a lot..

Today, Dr. Offit said: "Scientists actually believe in truth. It make take weeks or months or years to get to that truth, and one may never get to it, but I think we believe that it's there."

"Then you will know the truth, and the truth will set you free." I am thankful for the scientists out there who are seeking truth. Through their seeking truth, we will all be set free from these debates, from the array of alternative biomedical remedies to presumably curable conditions and from the "doctors" who administer these "cures." For those who do not seek truth: "The recipe for perpetual ignorance is a very simple and effective one: be satisfied with your opinions and content with your knowledge" (Hubbard). In Dr. Offit, we have a scientist who has taken off the lab coat and modestly grabbed the pen of an investigative journalist to break the silence of those scientists who have difficulty taking "the skills required to perform good science, write scientific papers, and present data in front of a scientific audience" and communicate the process and data involved in science and "reduce such complex issues" to be communicated to the average individual. Thank you, Dr. Offit, for Autism's False Prophets. Thank you for taking time to speak to us all in this book club. I am just sorry you have had to take time from finding such scientific truth to substantiate the truth that has already been uncovered about the causes of autism.

Thanks especially for the explanation about autoimmunity and autism. I've had numerous conversations by parents who speak of their children having "low immunity" and therefore being "more susceptible to reacting to a vaccine," but I'm not sure on what they were basing those claims (and not sure if they know either).

A commenter who is anti-vaccine once left a comment on my blog saying that s/he was glad when I wrote about vaccines; was just glad to see the issue out there and preoccupying people. One of the dangers of responding to a lot of the writing (veering on propaganda) about vaccines in the media is that I find that scientists, and myself and others who don't believe there is a link between vaccines and autism, are often placed in a reactive position. We often end up taking a kind of defiant posture and issuing a lot of "no, that's not the case" and "no that is not so." I've tried to make it a point that every time I mention vaccines, I also mention my own main concerns about autism research and for the needs of autistic individuals. I know when I write about vaccines that people are going to read it so why not get my own agenda out there at the same time.

Thank you for acknowledging that the 1 in 10,000 figure is a myth.

First I should quickly give where I'm coming from on this topic.
I am an independent computational biologist, a freelance scientist as it were. (All non-tenured research-only scientists are freelancers in many ways as they survive off research grants, but I am not formally associated with one institution as they usually are.) I have considered doing some science communication work between contracts and have tried to investigate some the issues involved, hence my interest in the comments here.

Dr. Offit commented "The skills required to perform good science, write scientific papers, and present data in front of a scientific audience are different from those required to describe science to a reporter or reduce complex issues to sound bites on television. And standing in front of a national television audience is not a natural act. Also, to bastardize Dickens, the media is an ass."

The more I look at the issues involved, the more I agree! On the negative side, a loss of specialist positions from media organisations seems to be one issue. (You get the impression of a "race to the bottom" between the media barons.) On the positive side, it clearly takes time to learn and practice presenting or writing for a general audience, time active researchers will rarely have.

The approach needed seems to conflict with scientists' approach to their own work. In particular, science requires dealing with a lot of complexity including uncertainities and confounding issues, things the public understandably rarely want to know about. Making broad statements can often mean to overlook minor issues. Likewise, simplifying invariably involves approximating to at least some degree. Certainly there is a need to discard concern for the formally correct "there is in principle a 0.07% chance that we might be wrong" type of thing! These run counter to a scientists "natural" desire for accuracy.

I'm not suggesting that scientists need to lie order to work with the media, but rather that conveying complex subjects simply seems to require more practice and thought that might seem obvious from a passing glance. At least that's my current thinking.

kristina: You are right I think, and you have a good point about taking a defensive stance. I would add that to speak out positively, as opposed to defensively, requires that you have a deep, broad and confident knowledge of the subject at hand off the top of your head and be personable enough to push your case forward.

I have to admit were money made available up-front to write a book, I'd be keen, but with money up-front so would so many others! Would one way forward would be to make a number of grants available for scientists to communicate directly to the public on important issues of the day?

Just a quick note: this post and the previous post from Dr Offit have not been tagged for the archives using the "Austism's False Prophet" tag - this will affect people using that tag to search for related posts in the archives. Could this tag be retrospectively added to the post, please?

I think it's very interesting that the comments seem to have slowed up. Maybe it's just the weekend. However, it's probably a very good thing, since it seems that the usual anti-vax-pro-safe-vax contingent has not continued to attempt to argue in this forum. I guess they prefer fora with less well-informed posters, or perhaps they are giving up. I would think that they'd imagine they were tough enough to take on Dr. Offit in a public forum, but maybe not.

jypsy - thanks for the message. I know it's like playing whack-a-mole to try to get that statistic retired, but we keep trying. . . .

The CDC regularly puts out information that is meant to motivate Joe Average to... stop smoking, eat green leafy vegetables, wash hands after using toilet, exercise... the media picks up on stuff like, "this is the beginning of the flu season" and "MRSA infections are a problem in this place and that."

I don't know, but I suppose some other agencies do that. Universities put out press releases, "Our own Professor Janges from our Photozoology department has discovered..."

So it's not like there aren't people who have been trying to translate science and put it into the public's hands. It's not as if there is no expertise out there. As far as I know the NYT is still doing it's Science Times section, which I haven't looked at lately, but was really interesting when I perused it when I was taking a "writing in science" course at UCD.

http://www.nytimes.com/pages/science/

But I guess it comes down to, maybe the NYT is the only paper left that is doing science some kind of justice, and the University press offices aren't doing enough.

I had a professor who is considered THE go to guy for the press to talk to about pheromones and humans (there aren't any, basically). He said that journalists would contact him and expect them to verify this or that about human pheromones (there's a cologne that men can use to attract women and vice versa - it's a fraud). He'd tell them that there were no human pheromones or that there is no human receptor for them, and they'd ignore what he said. I guess they thought he'd give them a different story. He said that one of the most common science misconceptions worldwide is that if women are put together for a sufficient time their periods will coincide... actually, no they don't. What he found was that no one had analyzed the data with the right statistics. Every periodical thing will synch with another periodical thing, periodically, then they go out of synch again... like, duh. Anyway, he said nothing seems to be making this false science "fact" go away.

I think that the CDC and NIMH etc were not cynical enough and not watching out for ambulance chasers who were more than willing to take what the spokespeople and experts there and twist it DELIBERATELY to these particularly scummy lawyers own ends.

So lawyers like the ones named in Dr. Offit's book, and my "favorites" the law firm of Waters & Kraus, just ran out to the media hauling these women, some of whom looked good on camera and who could sob on cue (Offscreen: Cue the waterworks Lyndelle! Great, great... now the heaving chest...Gooood. Now work the word "scalding" into a description of diarrhea that your son had. Yeah sweety, I know he didn't really have scalding diarrhea, but work with me Lyndelle... that's right honey... dab the corners of your eyes and look pleadingly at the camera and say, "My baayybbeee, they huuurt my baaaaybeee! It was the vac-cckk-v-vv-vacckseens!" Make sure you get the hiccup thing in there...)

So much of this media mess was cold-bloodedly staged. Not that there weren't crazed tin-foil hat wearing conspiracy theorists in the middle of all of it who would glady give their own interviews, but the lawyers in charge of the media blitz weren't looking for the cat-collector-grandma to speak to the reporters about her grandson who was practically killed by them vaccines, and then there were the black helicopters, hovering, day and night, night and day, and Bill Gates, he's one of the Illuminati, you know.

The CDC and NIMH just let the litigant parents right in the front door and gave them all kinds of access to the director of this and the director of that. It never should have happened, no matter how big and doe-like Lyndelle Redwood's eyes are and no matter how sad and vulnerable she looks when her bottom lip trembles and she dabs the corners of her eyes with a white hanky.

Then there's the stinking scientists who deliberately encouraged some of this stuff because encouraging a belief in the "epidemic" meant money in their pockets. David Amaral knows how to talk to the media. He looks really nice on camera, too, with his pretty blue eyes and all. He encouraged the belief in the thimerosal hypothesis at a time when he could have helped to squash it. I'm not going to forgive him for it, either. Look at the quote from Amaral in this graph.
http://bp2.blogger.com/_5jeYNBVx6WE/RahDbGMQVcI/AAAAAAAAAGA/u9UyPB3MXeA…

I hope everyone understands why I'm angry at some of the scientists who helped to damn autistic babies and children to years of chelation and other dangerous and stressful quackery.

"For many scientists, this [(the journalistic process)] is a very hard process in which to participate."

Clinicians say the same thing.

But participate you must, for if you do not, quackery and pseudoscience will eventually rule public policy and the funding you need to do real science and medicine.

Thank you for writing AFP.

Regarding scientists standing up for good science: I think that scientists have been reluctant to enter the vaccine-autism fray for many reasons.

Would it be possible, to cite your own experience (Prologue) and that of Sarah Parker, Marie McCormick, Kim Strassel, David Salisbury, those at the CDC (Chapter 6, "Mercury Falling", pp. 117-119), and others, that one of the reasons is that there are members of the public who want to end run around scientific results, interviews, and appointments that they don't like by resorting to slander and intimidation tactics?

Attempts at intimidation
LB/RB 3 Aug 2007

For that reason, I especially thank those who choose to do the uncomfortable work in the public arena to counter misinformation.

You wrote:

I've heard a Harvard economist (Bloom) describe the impact of vaccines when they first enter a developing country. He makes the point that family sizes start to get smaller and economies improve. His point being that not only does wealth make health (although you could argue that one in the US) but that health makes wealth.

Can you explain this? How is it the impact of vaccines can cause family sizes to get smaller and economies to improve?

Just trying to understand the premise here, thanks.

Curious, (and this is just a wild, but slightly educated guess) one reason is that there is no pressure to keep making babies to replace the dead babies. If you look back in many genealogy lists you will find families with lots of kids with the same names. The younger children named similarly are named after older dead siblings. For instance, Mary Shelley (who wrote Frankenstein) had two daughters names "Clara"... unfortunately neigther lived past toddlerhood (only one child grew to adulthood out of her five pregnancies).

What I'm wondering is what responsibility and power we as members of our communities can take up? If we see a badly reported science news story, how often do we challenge the editors and writers? I noticed that CNN had a video clip about Jenny McCarthy's claims about vaccines causing her son's autism which is now gone. I'm not sure why it vanished and I don't support censorship of opposing views but I'm wondering if CNN realized how misleading and potentially dangerous for public health it was. Do informed people have a responsibility to challenge misinformation?

A few years ago, I took a microbiology class. The antivaccination misinformation had gotten so bad that our professor told us never to risk our bodies to vaccines. This is someone who was well-educated and who had specialized in microbiology. And the room, full of pre-nursing students, swallowed that opinion whole. I didn't know as much about this issue as I do now, but even then, I was horrified. He could lecture us about herd immunity on one hand and then come out happily against vaccines. Now I wish I had challenged that. I probably wouldn't have changed his mind but maybe other students would have understood that his authority in such mattters should not be considered absolute.

Dear Dr Offit

The ether ate my post from a few days ago, so I will attempt to remember the contents of the epic. As I recall, I had one question and one whinge. First the question. If I have this rightly there are no reputable studies comparing non vaccinated populations and vaccinated populatoins for prevalence of neurological outcomes are there? Somewhere in the book I got the impression that such may exist, but I may have misinterpreted what were references to the studies comparing no thimerosal to thimerosal containing vaccines and the 'natural' experiment the Japanese conducted with the MMR. Grateful if you could clarify such. Not, mind you that I think those studies would necvessarily be decisive. People tend to forget that the whole vaccine schedule stands as its own safetly study and it's a real beaut, looking at the results, so much so in my opinion that most if not all the rare serious side effects of vaccines are coincident with vaccines rather than caused by them. The incidence is just too rare to be so certain that it must be the vaccines.

Now for the whinge. Kevin said very early in the piece that parents of autistic children are not saints. I'd like to add that they are not always honest either and unfortunately, in wanting to display a proper amount of sympathy for the plight of parents, you have tended to list to the other side of error in demonising the spectrum. It's often a kind of composite autistic mightmare portrayal of autistic children. Autism Speaks has used this strategy as ac fundraiser. How it works is to take the worst characteristics of many autistic children and roll them into this new 'representative autistic child'. It helps if you can also convey that that this child is like that 24/7. To see what i mean, you could try taking the worst character faults of ten or twenty of your friends and acquaintances and roll th4em into one 'representative adult'. Interesting to see what result you'd get. Now, the reason I think you've fallen into this trap is the very inaccurate portrayal of Karen McCarron and her actions. Before Karen murdered her daughter, Katie had been living with her father and her father's parents - up until 10 days before Karen decided that Katie had to go. Her father and grandparents were devastated and please note that they'd had the care of Katie for the prior 18 months and Katie was only three years old. Do ask Kevin for additional clarification. In this case Karen McCarron was the poster parent for 'I do not want this child to exist' and there are many of them. Quite unintentionally, but it is a tribute to the fidelity with which you have reproduced what people have said to you, you have quite accurately pinpointed the fundamentally different views held of their children by Camille Clark and Roy Grinkler on one hand and Peter Hotez on the other. I found it rather telling that Mr Hotez pointed to the career aspirations of his normal child as the inspiration of his autistic child, while Ms Clark and Mr Grinkler point unerringly to the actual characteristics of their autistic children.

It has been pointed out many times by autistic adults that a great deal of misinformation is distributed by rather gullible professionals and authors. This is harmful to autistics.

Dr. Offit:

Many thanks for writing this book; I've been both educated and entertained. I am one of the lucky 50, thank you Columbia University Press. I hope it reaches a wide audience, and I'll do my part with reviews on the better online bookstore sites. I encourage my fellow Scienceblogs readers to do the same.

I have one minor proofreading quibble -- on page 167, you mention "Embrel." It's "Enbrel." I also join those whose view of NCCAM is not as sanguine as yours. Other than that, it's a fine book, suitable for both the scientifically savvy and a lay audience. It must have been difficult to maintain the dispassionate tone when writing about those whose motivations seem less compassionate than greedy, but it's good that you did. That should help sway some of the undecided.

HCN:

Thank you. I was wondering why it is "preferable" for family sizes to be smaller.

Smaller families are less expensive, help the environment by not putting a strain on local resources, and giving birth itself is not without risks, so the more babies a woman has the more chance of complications.

You might want to look at the history and policies of China, and even some historical reading of population booms that required mass emigration (like Ireland after the potato famine, and Scandinavia --- my step-mother's father was one of 18 children, the large families literally made it so there was no land available in their part of Norway).

I'm sorry, I did not realize that this had to be explained. I would suggest you read Jared Diamond's "Collapse" (along with his earlier "Guns, Germs and Steel") books.

I'm interested in what Kristina (#2 above) said about being put in the reactive position. Although it's quite clear now that vaccines do not cause autism, I think our position will be much stronger when we can say with clarity and confidence what does cause autism. Unfortunately, it sounds like the answer is probably complicated (as with multiple sclerosis and Alzheimer's disease), so we may not have a definitive answer anytime soon.

super Thank you. I was wondering why it is "preferable" for family sizes to be smaller evt

okey

Thanks

Regarding scientists standing up for good science: I think that scientists have been reluctant to enter the vaccine-autism fray for many reasons.

Would it be possible, to cite your own experience (Prologue) and that of Sarah Parker, Marie McCormick, Kim Strassel, David Salisbury, those at the CDC (Chapter 6, "Mercury Falling", pp. 117-119), and others, that one of the reasons is that there are members of the public who want to end run around scientific results, interviews, and appointments that they don't like by resorting to slander and intimidation tactics?