Reactions to the Schechter and Grether vaccine/autism study on Mothering.com

I've pointed out before how MotheringDotCom and its associated discussion forums are supportive havens for the worst antivaccinationists, HIV/AIDS denialists, and anti-amalgam wingnuts, which is one reason why I do not recommend them for any parent as a source of health information. So, out of curiosity, before I move on to other topics tomorrow, I was curious what the reaction on the MDC discussion boards was to the study by Schechter and Grether yesterday that provided strong evidence against a link between the mercury in thimerosal-containing vaccines (TCVs) and autism/autism spectrum disorders.

Not surprisingly, there was quite the buzz in which the stupid really does burn, but surprisingly there were a couple of voices of reason as well.

First, we have the introduction of the article, complete with the usual conspiracy-mongering by a poster named daisymommy:

Of course I don't believe they're correct. I just wish Hillary was around to look at who it was that did the study, their methodology, etc. Because obviously something is wrong here. Am I remembering correctly, that the Department of Public Health who did the study is a FDA/government funded agency? Which would explain everything right there.

I'm not sure what, if anything, Hillary Clinton has to do with any of this, but it's nice to see the usual blanket dismissal of a study whose results you don't like if the government had anything to do with it. Now, amazingly, here's the voice of reason:

I think the thimerosal argument has been very well canvased both in recent studies and through the ongoing trials. Personally, I don't see a link and it is becoming a less viable theory as time goes on. Eventually we will get the study funded by congress in front of us and the results of the trials...I think by then the need for a new theory will become clear.

But I could be wrong, but the preponderance of the evidence so far does not seem to say so.

It's an understatement, of course, to say that the evidence "does not seem" to support a link, but give her credit for trying. I just hope she isn't banned as a "pro-vaccine" type under the rules of the forums:

MotheringDotCommune is a community forum geared toward parents interested in Natural Family Living. On the issues of vaccinations we believe in informed consent. This means we look at both sides of the vaccine issue. However, one of our objectives, and for which members and guests come to our forum, is to bring to light the information that is not mainstream and readily available.

Recently, we have seen several members join MDC who seem to have an agenda to promote vaccinations. Though Mothering does not take a pro or anti stand on vaccinations, we will not host threads on the merits of mandatory vaccine, or a purely pro vaccination view point as this is not conducive to the learning process.

We will be contacting several members to discuss their sincerity on MDC. In the meantime, we are asking our members not to quote from this notice or address members within a thread as this is strictly prohibited. Instead, contact a forum moderator or administrator if you are concerned about a post and we will take appropriate action if need be.

"Not conducive to the learning process"? More like not conducive to woo-friendly board contributors maintaining their little bubble of mutually supportive antivaccination wingnuttery. Nasty skeptics pointing out that the evidence does not support the idea of "vaccine injury" as a cause for autism are like that. They tend not to abide such foolishness and like to pop that protective little bubble.

Perhaps the dumbest statement that I saw came from someone using the 'nym anewmama:

I always feel that if the evidence is so clear that vaccines are not contributing either in a primary or secondary way to autism, then there should be some evidence pointing towards what is creating the epidemic of autism. It makes NO sense to me that they are so easily ruled out. If their study IS in fact so thorough and so scientific, then there should be in the end something to point towards what is causing it other than just a the blanket statements such as "the definition has changed, more are diagnosed with autism, better diagnostic tools." Even if that IS the case, this still doesn't explain why there is so much autism. Why teachers are finding it so much harder to teach and help their students. There is clearly a rise that goes beyond just definitions.

No, there is not "clearly" a rise that goes beyond definitions. There may be, but it's far from clear. Also, "other evidence" does point towards what is creating the "epidemic" (which is not an epidemic) of autism. Just because anewmama is ignorant of the other evidence pointing towards primarily genetic causes of autism does not mean that it doesn't exist. It does, and she should take the time to educate herself before spouting off so ignorantly.

If you want an example of the arrogance of ignorance, the MotheringDotCom forums are for you.

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By Hilary, they are referring to Hilary Butler, author of the self-published piece of science fiction titled "Just a Little Prick." Hilary was such a nut job she actually got banned from MDC.

I am a biomedical scientist and I agree with you. It bugs me but I just stay out of the sub-forums on health.

On the other hand, MDC is one of the best sites for accurate information on breastfeeding and circumcision.

Overall, there is a lot of wisdom on MDC for new and experienced parents. I would guess that on average, participants are more educated than on many more "mainstream" parenting forums.

I dunno; I've known them to be quite militant on the subject of breastfeeding, to the point where parents who for whatever reason do not have the option of breastfeeding are not made particularly welcome -- let alone given good advice (or indeed any advice) about how to feed a child without breastmilk. Perhaps they've changed since the time I encountered MDC, but I personally wouldn't recommend going there for breastfeeding information.

(BTW, I am a firm advocate of breastfeeding, and am a lactating mother. But militant breastfeeding advocacy bothers me a great deal for its blindness to contrary positions, and to the fact that the world is not as simple as "breast is best, so that's all that's worth discussing".)

By Calli Arcale (not verified) on 08 Jan 2008 #permalink

Amy, some may be educated but several are just downright nasty! [Alegna, for example.] MDC Mamas have reduced motherhood to a competitive sport -- who can breastfeed the longest, who can co-sleep the longest and with the most children per square inch of futon, who is most passionate about anti-vax, who can go without sleep the longest, who is wearing the biggest baby. It is a shame that the extreme voices at MDC can shout anybody down and the mods just back 'em up. There are far more supportive places to find help with breastfeeding. MDC is a great comfort, no doubt, to those who feel like black sheep in a mainstream world. But I would never recommend MDC to a new mom.

MDC makes my head want to explode. And that's just the blinkies.

I'm just busy waiting to see just how many studies like this come out before they believe them. Since there can't possibly be anything else responsible for autism.

It's nice to have woo-friendly contributors buzzing (they look at the ads, no?) But, I wonder whether vaccines fall under "Natural Family Living" (if not, they're taking a position).

I chuckled @ "most children per square inch of futon" above.

I just had my first encounter with a mothering troll. She came to a board FULL of skeptics (its the new Internet Infidels, Rants&Raves), declared vaccines were a fraud and scientists are idiots, but refused to 'debate' any of us.

We had to go to mothering.com to 'debate'... except we would get banned from the site for the above reasons.

Like a damn taunt from SAL Cordova to 'debate' at Uncommon Descent *rolleyes*

ERV said "We had to go to mothering.com to 'debate'... except we would get banned from the site for the above reasons."

I was in a store where the pregnant clerk was told by another customer to check out sMothering.com. I told her to be wary, and the other customer said "it is good to check out all sides of an issue".

About then I just about lost myself to laughter (since several JREF folks had recently been banned from there).

If their study IS in fact so thorough and so scientific, then there should be in the end something to point towards what is causing it other than just a the blanket statements such as "the definition has changed, more are diagnosed with autism, better diagnostic tools." Even if that IS the case, this still doesn't explain why there is so much autism.

Is she actually saying that a study that says that mercury doesn't cause autism should also say what does cause it, or else it's flawed? A wrong answer is better than no answer, I guess, or proving that something is false just isn't enough to disprove it. . .

It's silly of the conspiracists to bring up conflicts of interest and funding when it comes to this particular study. The data is public and has been graphed to death by many bloggers. We were talking about this data well over a year ago. Anybody can get the data and write a rebuttal if they actually could.

Joseph,

I completely agree with you there. I've read your intelligent analysis on the data numerous times. I just read the study myself, and it's pretty public and simple both in the data and the methodology. I was happy to see that they properly used birth rates and/or population rates to calculate prevalence. They even used free software to do the analysis.

As for conflict of interest, I didn't even see one declared. The only COI complaint one might make in a study of open data like this is that the conclusion was inaccurate or reached beyond the data. This did not at all appear to be the case here as I found the wording to be extremely unbiased and well articulated.

Mark Blaxill himself has commented that the study was well done.

One interesting point though. This study certainly indicates that the prevalence continues to grow at a steady rate. That may not be epidemic by Orac's standard, but it certainly is problematic.

There will never be anything to convince the Mothering.com loonies that vaccines do not cause autism. They scream for unvaccinated cohorts without a shred of knowledge of what is required for study designs. No matter how many robust epidemiological studies are done; the raw data would be wasted on these brainless buffoons unless it came with nauseating smilies.

Look at both sides of the vaccine issue? My ass. Any voices of reason get run off by the fascist moderation there headed up by none other than Ms. Mothering herself Peggy O'Mara. A list of her so-called vaccine "expurts" are none other than Barbara Loe Fisher, Sherry Tenpenny, Mary Tocco and "Just took his first sip of the Kool-Aid" Dr. Bob Sears:
http://www.mothering.com/sections/experts/meet_the_experts.html

Does anyone, in their wildest delusions, possibly think that this nutter brigade could read, let alone understand a study that does not support their pseudo-science beliefs that incidentally, need to be regurgitated to them by anti-vax pundits?

Don't even get me started on the infant mortality rate amongst women on MDC attempting unattended births; it resembles that of Uganda. But hey, at least it's natural.

oh, that site is scary - talk about your fanatics...

I was there reading a discussion on something seemingly benign a while ago, and was just stunned by the level of competitiveness, bitchiness and downright nastiness...

By CanadianChick (not verified) on 08 Jan 2008 #permalink

MotheringDotCommune wrote;
"geared toward parents interested in Natural Family Living"

It continues;
"We will be contacting several members to discuss their sincerity on MDC. In the meantime, we are asking our members not to quote from this notice or address members within a thread as this is strictly prohibited."

MotheringDotCommune associates Lowie and Vito should be in contact with you members very soon. You know who you are and we know where you live.
Have a nice day.

Signed,
The supreme Natural Mother

By Uncle Dave (not verified) on 08 Jan 2008 #permalink

The first rule of MDC is - you do not talk about MDC. The second rule of MDC is - you DO NOT talk about MDC.

Does MDC realize that, at inferior conjunction, Earth is as close as 77 million kilometers to the planet Mercury? Can't they do something about that? Why won't anyone protect the children?

"On the other hand, MDC is one of the best sites for accurate information on breastfeeding and circumcision.

Overall, there is a lot of wisdom on MDC for new and experienced parents. I would guess that on average, participants are more educated than on many more "mainstream" parenting forums. "

HAHAHAHAHA. Oh man, I'm guessing you haven't been reading it long - I had that opinion when I first visited, but the more I read, the more insanity I discover. Like, if your one year old isn't interested in breastfeeding, it couldn't possibly because they are weaning - no, you should withhold all solid foods from them and force them back to breastfeeding. Or the advice to withold all solid foods from your baby until they basically tackle you for it and steal it directly from you - that's the only way to tell if they are truly ready. Nevermind that there's not a SHRED of evidence that withholding solids that long is any better or any more natural than introducing solids at 5 or 6 months of age. And god help you if you have a legitimate reason for having to supplement with formula - you'll get some lip service about how you are doing your best, but the underlying message will be clear - you didn't try hard enough to breastfeed.

I am glad they banned Hillary Butler, though. She was a whackjob of the first magnitude - actually, I'd love for someone skeptical to tackle some of her stuff on how massive doses of vitamin C will cure pretty much anything.

I can't even discuss the unattended childbirth stuff without raising my blood pressure in a serious way - and I'm someone who planned and had a natural childbirth with my first, and will probably have a midwife for my second.

As far as how supposedly educated the posters are, no, they really aren't. They're just really good at parroting back the party line. Look at how often the 'Harvard Study' is cited as evidence for how cry-it-out sleep training is bad for babies. Now go find the actual study and see what it really says. Oops, it's not even a real study! It's a press release, and if you hunt around to find the original data, you'll find an unpublished manuscript that doesn't provide ANY evidence for the stuff stated in the press release! If the MDC posters were so educated, they'd have actually bothered to research that much-beloved source. But because the press release fits their nice preconceived notions, they don't bother - and if you happen to point out that the press release is misleading, you will get banned for 'advocating CIO'.

"Though Mothering does not take a pro or anti stand on vaccinations, we will not host threads on the merits of mandatory vaccine, or a purely pro vaccination view point as this is not conducive to the learning process.

"We will be contacting several members to discuss their sincerity on MDC. In the meantime, we are asking our members not to quote from this notice or address members within a thread as this is strictly prohibited. "

Dang! That's not a parody? Those folks are so far down the rabbit hole, I hope they brought chopsticks.

MDC is not a good place for information about *anything* related to health, including breastfeeding and circumcision. It's not surprising, either... Editor Peggy O'Mara, for example, is on the board of "Alive and Well", Christine Maggione's HIV/AIDS denialist organization - the party line at MDC (if it's not deleted, it's the party line - they're ruthless about taking down posts and whole threads) is that breastfeeding is best EVEN WHEN the mother is HIV positive. And that's not great information.

This particular type of idiocy can be fun to toy with.

Example:

Sodium is a highly reactive metal, which will explode violently if it comes into contact with water. Chlorine was used to kill soldiers in WWI. Any compound containing these elements MUST be dangerous!

or:

Hydrogen is dangerously explosive, and is responsible for the deaths on the Hindenburg. Oxygen is highly reactive, and is responsible for metal failure, and the oxidation and death of human cells. Any compound containing these elements is deadly, and must be banned.

See? Try it out for yourself. Fun for the whole family!

By Rich Stage (not verified) on 09 Jan 2008 #permalink

The Mothering hippies drive me NUTS, and I'm half-hippie myself. If the people who post there are truly considered "well" educated, that's a far better argument for homeschooling than any explicit case those women have made.

I can't find the thread anymore, but some of them are so anti-vax that they don't even want to vaccinate their pets. Someone was looking for a religious exemption so the county wouldn't force her to give her dog a rabies shot. I guess so the dog doesn't get autism? Can't allow heavy metal poisoning to give a dog stereotypies and delayed verbal skills.

One interesting point though. This study certainly indicates that the prevalence continues to grow at a steady rate. That may not be epidemic by Orac's standard, but it certainly is problematic.

Technical correction, Swartz. The study indicates that the administrative prevalence in California continues to grow. That's not as problematic after you see how easily autism is missed even by today's standards.

Sorry, I'm not sure I understood. Are you saying the prevalence is underreported or overreported? I think you're saying underreported, which may account for the difference in absolute prevalence expected by the CDC.

You've studied the data a lot more than I have. Do you think the administrative prevalence growth rate is accurate for the recent past? If so, do you think it correlates to actual prevelance?

Thanks. Schwartz

(if it's not deleted, it's the party line - they're ruthless about taking down posts and whole threads)

They deleted the thread. I was having fun debating a couple of these weirdos, but it appears they would rather get their information from Deirdre Imus than a legitimate medical or scientific source.

By Rich Stage (not verified) on 09 Jan 2008 #permalink

My 5 yr old nephew is being tested for autism next week. I had a conversation with his mom Tuesday night, and I was very shocked to learn that she is buying in to this hype that vaccines have something to do with autism. I have since sent her every link I can find about the genetics of autism and the copies of the studies that say that vaccines are not linked to the disease. She just parrots back all the McCarthyism.....

Are you saying the prevalence is underreported or overreported?

Definitely underreported, compared to say, an exhaustive whole population screening, and this is not surprising. Diagnosed prevalence might never get to the levels of a full screening.

To take an example, when the population of children or adults with mental retardation is screened, about 19% will be found to meet criteria for autism/PDD. Some studies say it's as high as 50%. Contrast with California DDS, where only about 7% of kids with MR are also classified as autistic.

The same is no doubt true about other populations, such as the population with epilepsy and so forth.

I was talking about a 1% prevalence well before that started to become a commonly cited number. I've even mentioned prevalences closer to 2%.

How easily the common sense goes down the drain on that site. I would NEVER send a new parent there. There are other places to learn about exclusive breastfeeding or "alternative" parenting stuff without having to read all the anti-vax, UC birth at all costs type of stuff.

My 5 yr old son is autistic and was so before he ever got a vaccination (and being born in Canada at this time his vaccinations were mercury free). I can't even begin to comment on McCarthy-ism (the one with the google PhD ....*sigh*).

It's funny how the one poster insists that a study showing no link between vaccinations and autism is only valid if it shows a link to something else and autism. Like autism has only one cause which should be easily identifiable and then, of course, easily avoided or cured. I wonder what she'd say if someone explained to her that autism is a set of diagnostic criteria...oh forget it, I can't deal with this kind of stupidity today.

When you did your analysis, did you just look in the vaccine forum, or did you also go to the special needs forum? If you went to the SN forum, you will notice a distinct difference in views.

If anything, MDC members give antidotal evidence that you can be non-vaxed, breastfed, natural births, organic or vegan or vegetarian, avoid western medicine and antibiotics and do everything "right" during your pregnancy, birth and the early years of your child, and they STILL have autism.

Unlike typical communities where there is some question if you did something that caused it, there is a significantly high number of people that did exactly what the non-vaxers say to do to avoid autism, and yet, they still have it.

I, unlike many of the PPs, actually like MDC and have been a member for years. There is a lot of great information there, although you do have to sift through some of the extreme stuff and just plain avoid a few of the forums, but as a whole, it is a neat community. The SN forums are great, as are the breastfeeding, diapering (or at least it used to be), homeschooling, gentle discipline, and general chat forum (closed to new posters, but probably the most interesting place there).

I don't agree with everybody there, naturally, and I shake my head in disbelief on occasion, but most people there are just normal people. The crazies just happen to be really prolific writers. Plus, in the last few years, the censorship has become extreme, and ANY voice of dissent or even honest curiousity is met with post deletions, probation, and banning. The result is that the forums often only reflect the views of the extreme and does not really relfect the views of the community as a whole.

Dear gods, their breastfeeding extremism really pisses me off. Both my partner and I are very enthusiastic about the breastfeeding. Unfortunately, with our second (nearly a month old now), things aren't working out so well with it. Because of some anesthetic complications during the c-section, lactation didn't kick in very well at the start. Our son got used to the bottles, which are easier and subsequently he doesn't suck hard enough to get it going much better.

One of the women in her new mommies group was just vile about it. Said women, already had issues, because (gasp) momma had a c-section, when there was a slim possibility of a natural birth (our first son was a c-section, making it far more difficult to have a natural birth subsequently). She has implies that there is just something wrong with my partner, because we are supplementing with formula, though we are now close to fifty-fifty, up from all formula a month ago.

I have seen this sort of thing before, with other women who, for a variety of reasons, supplement with or even feed strictly with formula. The most notable, a sister in law, who went to formula, because her baby had an adverse reaction, assumed to be because of a medication she is on. While I am firm in the belief that breastfeeding is the best thing for most babies, it is not for everyone. While I will admit to having some indignation towards women who don't breastfeed because it's icky, it is not something to be judgmental about. Not every women can do it. Due to the "miracles" of modern science, it is now quite easy to sustain an infant and keep them healthy, even if momma's breasts can't make it happen.

Sorry about the rather OT rant, but I am rather sensitive about this. Momma is thinking about quitting the group because of this one breast fanatic, which would be very unfortunate, as the group has been very helpful. Especially with this being our second child. It has been a great source of other kids who are new older siblings, several of whom are close to him in age.

I agree that MDC is full of some of the craziest people you will ever encounter. However, I prefer it to the other forums I used to frequent, where at least half of the people were letting newborns cry until they vomited, and a good 20% or so (judging from responses to posts) were hitting non-verbal toddlers as a form of discipline. The world is full of stupid people. I have also gotten warnings for breaking the user agreement on other online parenting communities (once for pointing out that paddling was, in essence, hitting a child with a stick- I guess that's a personal attack, though I would argue that it's not as personal as hitting someone with a stick).

The stupid people at MDC just happen to believe weird things for the wrong reasons, as opposed to believing commonplace things for the wrong reasons. And all in all I do think that there is more good advice (and even good spelling) there than at other online parenting sites.

If this makes you want to cry, you are not alone.