Respectful Insolence

Fear and loathing and vaccines

As hard as it is for me to believe when I look back at it, I’ve been writing about the antivaccine movement now for more than seven years here on this blog and combatting it online for at least a decade now. I like to think that over the years my response has evolved somewhat. Back in the beginning, I used to be a bit more—shall we say?—insolent in dealing with antivaccinationists. It’s an easy thing to do because so much of what antivaccinationists write and say is just so darned idiotic. Indeed, even today, I still have a tendency to slip back into my old ways when an antivaccinationist makes a particularly brain dead argument, as Dr. Julian Whitaker did a couple of months ago at FreedomFest and then dug himself in even deeper trying to respond to criticism. Still, these days I tend not to let it rip quite as often or as intensely as I used to. I like to think that part of the reason is that, even at my advanced age, I’ve matured slightly, but it’s also likely that part of it comes from a realization that I need to distinguish more between the real antivaccinationists, the ones spreading the pseudoscience and misinformation, and the vaccine-afraid or vaccine-averse parents who haven’t quite fully drunk the Kool Aid yet and can still be reached.

Although I realize that I can never, ever reach them and that if I ever were to reach one of them it would be a minor miracle, I still wonder sometimes about the motivation of antivaccinationists. Why are they so passionately against vaccines? Why do they, against all reason, science, and evidence, have such an unshakeable belief that vaccines are harmful? To understand this, I’ve learned to listen to the parents themselves as they tell us their reasons on antivaccine blogs, and two of them have done just that (albeit somewhat unwittingly) on two of the looniest antivaccine blogs on the planet. First up, on that wretched hive of scum and quackery, Age of Autism, Cathy Jameson ties herself into metaphorical knots over her inability to forgive her child’s doctor for the wrong she perceives that he’s done her, namely making her child autistic with vaccines. Meanwhile, over at the companion antivaccine blog of AoA, Tninking Moms’ Revolution, BK blames herself for her child’s autism. Combining these posts, one can see in these two mothers intense anger, a need to blame someone for autism, combined with an intense self-loathing and blame for thinking that she caused her child’s autism.

First the anger from Jameson, who asks herself whether she can forgive and “let it all the evils wash away—the guilt, the pain, the anxiety, the despair.” Unfortunately, her thinking is completely unrealistic and fantastical:

Can I truly forget how Ronan’s downward spiral began?

Can I honestly forgive the ills that brought Ronan to where he is (and isn’t) today?
Can I totally look past the medical neglect we discovered only too late?

Can I completely overlook the medical abuse I didn’t recognize?

Can I fully embrace the life-long struggles Ronan may face?

How do I accept all of that?

Here’s what I can accept. I can accept that all of that did happen to my child, but I will not accept that it had to happen.

Of course, vaccines did not cause Ronan’s autism. Scientists might not know yet what does cause autism, but if there’s one thing they do know it’s that it’s almost certainly not vaccines. The science is voluminous, from multiple sources, and overwhelming. Antivaccine activists refuse to accept that for whatever reason, be it that they do indeed need someone to blame or a fear and distrust of medicine.

Let’s also not forget that confusing correlation with causation is natural to human beings. We do it all the time. Moreover, when millions of children receive vaccines during a the time during which autism and autism spectrum disorders are most commonly diagnosed, there will be a large number of children who exhibit their first symptoms of autism sometime around when they receive one vaccine or other. Yes, as hard as it is for human beings to accept, this can be coincidence alone. To demonstrate that it is not, that correlation might imply causation, it’s necessary to do carefully controlled studies of large numbers of children, controlling as well as possible for confounders, to see if vaccination in general or specific vaccines are associated with an increased risk of autism. These studies have been done, and they aren’t. Even so, it’s important to remind skeptics that it’s not necessarily because of stupidity or obstinacy that parents cling to the belief that vaccines cause autism. To a single person looking at a single child, seeing autistic regression in reasonably close temporal proximity to vaccination can appear all the world as though the vaccine(s) caused it. That’s how human beings think. That’s how our brains work. Overcoming how our brains work requires science, but all too often personal experience trumps science.

Human beings also like order. We don’t like it when something “just happens,” as autism does. There must be a reason. Once someone fixates on vaccines as the cause of her child’s autism, it’s very, very difficult to dissuade her, if not impossible, as there are many rewards that come from having a cause. First, it means that there is indeed order in the universe. There is good. There is evil, and that evil is a villain who can be blamed: big pharma, the government, doctors, public health officials. More importantly, there is hope that her “real” child can be “recovered.” It’s a false hope in that none of the quackery the antivaccine movement regularly leads parents to try is an actual cure for autism or even a treatment that provides any detectable benefit. It is, however, hope. Human beings will often defend hope irrationally, no matter how hopeless the situation.

And there is something (and someone) to blame, as Jameson blames her doctor, believing that he owes her and her family an apology for having caused her child’s autism:

I’m sorry you didn’t open your eyes to see the red flags being waved right in front of your face. I’m sorry you weren’t proactive or as concerned as I. I’m sorry you were clueless and that your ignorance failed my child. I’m sorry your medical knowledge of vaccines paled in comparison to mine. I’m sorry you were ignorant of the answers from my endless list of questions. I’m sorry you wasted my time telling me ‘boys will be boys’ and ‘to just wait it out’ when Ronan needed help right away. I’m sorry I didn’t leave your practice and dangerous decisions sooner. I’m sorry I didn’t know as much as I do now. I’m sorry your patients’ parents are still accepting the drivel that comes from your practice about vaccinations, unnecessary and hazardous mind-altering medications and overly-prescribed antibiotics. I’m sorry I have to tear a new one into you now because I should have done it sooner.

This lashing out is very, very common in antivaccine parents. They believe that vaccines caused their child’s autism. It’s a completely erroneous belief, not grounded in any science or evidence, but they really do believe it. Because they believe it, they blame medicine in general but their doctor in particular both for having “taken their child away” and having caused his autism. The result is tirades like this one by Jameson.

Of course, Jameson is reasonable in comparison to the many denizens of AoA. One commenter in particular can’t resist a little argumentum ad Nazi-um:

How many Jews do you think have forgiven Hitler? Where are they?

This same commenter, Willie, uses the informed consent form and the Vaccine Information Sheets that doctors provide when they vaccinate to attack a straw man argument of physicians and medicine:

“No one owes your son any apology except you. Remember that consent form you signed right before your child was vaccinated? YOU signed that paper authorizing the doctor to vaccinate… …The consent form should make parents stop, decline the vaccines, and go home and do some research before signing. The buck stops with the parent who signs that form and therefore is the one responsible when something goes wrong.”

With respect to the consent form discussion and the callus comment above. This comment and argument is incomplete and therefore false and misleading and should be rejected as it assumes facts that are not true i.e. that everyone was offered an informed consent.

This of course is tantamount to letting a killer off on a technicality.

Because giving a child a vaccine is just like being a killer, and an informed consent that doesn’t list every fantastical “risk” that antivaccinationists can dream up in their fevered brains is a “technicality.” Of course, this is nothing more than the concept of “misinformed consent” that antivaccinationists use, both to frighten parents (by demanding that they be “informed” of “risks” that are not risks) and as a weapon to claim that physicians didn’t give them adequate “informed consent.” Of course, there’s no reason that physicians should tell patients or parents about “risks” that science doesn’t support.

On the other hand, Willie’s straw man argument brings us to BK’s post on the Not-So-Thinking Mom’s Devolution on Forgiveness and Stuff. After listing all the evil vaccine-supporters she’s mad at, such as pediatricians, the government, the CDC, Bill Gates, and the like, she reveals whom she is really angry at:

No, the anger that I feel toward “the system” is not my biggest problem. My problem is the one person that I hold the most responsible for my son’s illness: MYSELF. The anger and contempt I feel toward myself is unlike anything I have ever dealt with before. I am not angry at myself because I didn’t know not to vaccinate at the beginning of my son’s life. I am angry because I didn’t see what was happening to him as autism set in and began to take root and grow deeper with each set of shots.

Oh , NOW I can see it. All I have to do is look through my son’s baby pictures. Instead of bringing me joy, they bring me great pain. I see how attentive he was back then, how he looked and smiled at the camera when he was 18 months old (something he lost and still doesn’t do now at age 10), and just how much more “with us” he was. His regression was much slower than a lot of kids; it wasn’t an overnight loss of skills, but rather things disappearing rather gradually, and language that just would not progress at all, even though he said his first words at around 10 months old. It wasn’t until he was five years old that his behaviors turned violent; he changed from my sweet, compliant little boy to a self-injurer. So, when I look back at his pictures, I see “before self-injury” and “after self-injury,” and I kick myself repeatedly for what I didn’t know then, and how I continued to vaccinate him year after year. Why didn’t I know? How could I be so blind? If I had stopped vaccinating him, he would be so much better by now. Look what I did to him! It’s all MY fault!

And this is arguably the most harmful effect of the antivaccine movement on actual antivaccine parents. As wrong as their beliefs are, as scientifically unsupported their pseudoscience is, as much as we know that vaccines do not cause autism, the belief that they do is a corrosive force that leads to self-anger, guilt, and self-doubt, all due to the false belief that they caused their child’s problems. Imagine it! Think about what it must feel like to believe that you caused your child’s autism. Never mind that it’s not so. It doesn’t matter to the feeling, which is still there and still real because you believe. None of this means that we should in any way respect the pseudoscience that antivaccine parents are peddling. We need to make sure that their delusions do not infect the public at large.

On the other hand, as much time as I spend combatting antivaccine nonsense, even as I’ve been attacked for doing so, I can’t help but feel sorry for women like Cathy Jameson, whose antivaccine beliefs lead her to be angry at the world; BK, whose self-hatred appears to be truly pathological because she believes she caused her child’s autism; or Kent Heckenlively, whose belief that vaccines caused his daughter’s autism has led him to take her to one quack after another. They are miserable people whose misery would be greatly alleviated if they could just find a way to accept science and get on with their lives. As it is now, they aren’t doing themselves or their children any good. They certainly aren’t doing public health any good.

Comments

  1. #1 Chris
    Neither here nor there...
    September 19, 2012

    Ugh, these people are disgusting.

    My son’s seizures first occurred when he was a newborn. Because of this he was only given the DT vaccine, with protection from pertussis removed, at a time when there was a pertussis outbreak in our county. Thank you, Barbara Loe Fisher!

    Then as a toddler he got a severe gastrointestinal illness that caused more seizures (probably rotavirus, for which there is now a vaccine). He is permanently disabled with a severe speech/language disorders. He has tics and stimming behaviors that are similar to those with autism. Except he was first seen by a neurologist before the DSM IV… who saw he sunny disposition and declared he was not autistic.

    These people hate me. And I am not very fond of them. They have siphoned scarce bits of public research funds to their “vaccines cause autism” goose chase, and away from services that would help my son. They don’t really care.

    Some have even suggested that my son deserved his fate as part of the “fittest to survive from Darwin.” A very warped form of eugenics. Though the question is always if the child is harmed by vaccines, how would they survive the actual disease?

    I have asked them many times which vaccines cause more seizures than the actual diseases. I do request that they provide the title, journal and date of the PubMed indexed papers that support their statements that the vaccines are more dangerous than the actual diseases: yet they refuse to answer.

    One person actually accused me of asking the “WRONG” question. Yeah, right. It is just one they cannot answer without admitting they had no argument.

    And it is one of many questions those folks will not answer.

  2. #2 Anj
    September 19, 2012

    I read the AoA piece earlier. It was depressing to see someone who expends so much energy in anger and lashing out.

    However, I know some parents of special needs parents and have never met anyone like her. She’s part of a very small demographic. It’s a relief to know most parents are not like her.

    I think she represents a portion of the antivaxx demographic which could be characterized as not so much Ideological Antivaxxers whose antivaxx stand is part of a larger ideology distrustful of The Industrial _______-Complex Establishment, but as a They Done Me Wrong, personal insult antivaxxer. The ideological antivaxxers don’t need to have a “vaccine injured” child or know a family who claims to have one. For them, the claim that Big Pharma damages children for profit is enough. It fits in neatly to their ideology.

    For a stellar example of the larger ideology, Thinking Moms Revolution posted this:
    http://thinkingmomsrevolution.com/christianity-and-the-false-god-of-modern-medicine/

    (I don’t think this is at all typical of most Christians, however, it shows how you can use religion to excuse and justify your own opinions. At least one person said the comments were purged of dissenting opinions.)

  3. #3 Anj
    September 19, 2012

    Addition:

    The Done Me Wrong antivaxxers would likely have never joined that club without having had personal experience with autism disorders. (Or disorders that are NOT autism. Some of the most severe cases of Angry Parent I’ve seen involve children with disorders which don’t seem to fit into the ASD.)

    Ideological Antivaxxers don’t need a personal experience to “know” that Vaxx ‘R Bad. They use the stories of Done Me Wrong antivaxxers to support their beliefs.

  4. #4 Renate
    September 19, 2012

    I start to wonder how these people would react if their child died in a car-crash. Would they blame the car manufacturers, or would they start a war against cars?

  5. #5 Renate
    September 19, 2012

    For a stellar example of the larger ideology, Thinking Moms Revolution posted this:
    http://thinkingmomsrevolution.com/christianity-and-the-false-god-of-modern-medicine/

    So god wants most of us to die at an early age?

  6. #6 Anj
    September 19, 2012

    @Renate,

    HER God apparently does.

    It certainly makes me wonder about her and her God.

    (Evolution is a harsh mistress.)

  7. #7 Grant
    September 19, 2012

    [off-topic]

    A while back Orac wrote a piece about the death of Jasmine Renata being ‘used’ to attack Gardasil:

    http://scienceblogs.com/insolence/2012/08/09/a-sad-premature-death-cynically-used-by-antivaccinationists-to-attack-gardasil/

    One of the key expert witnesses in that was Dr. Lee, who claimed he could detect HPV DNA bound to the aluminium adjuvant in the child’s samples. On 30th August this paper was published in J. Inorg. Biochem. in which he claims (from the abstract):

    “Medical practitioners in nine countries submitted samples of Gardasil® (Merck & Co.) to be tested for the presence of human papillomavirus (HPV) DNA because they suspected that residual recombinant HPV DNA left in the vaccine might have been a contributing factor leading to some of the unexplained post-vaccination side effects. A total of 16 packages of Gardasil® were received from Australia, Bulgaria, France, India, New Zealand, Poland, Russia, Spain and the United States. A nested polymerase chain reaction (PCR) method using the MY09/MY11 degenerate primers for initial amplification and the GP5/GP6-based nested PCR primers for the second amplification was used to prepare the template for direct automated cycle DNA sequencing of a hypervariable segment of the HPV L1 gene which is used for manufacturing of the HPV L1 capsid protein by a DNA recombinant technology in vaccine production. Detection of HPV DNA and HPV genotyping of all positive samples were finally validated by BLAST (Basic Local Alignment Search Tool) analysis of a 45-60 bases sequence of the computer-generated electropherogram. The results showed that all 16 Gardasil® samples, each with a different lot number, contained fragments of HPV-11 DNA, or HPV-18 DNA, or a DNA fragment mixture from both genotypes. The detected HPV DNA was found to be firmly bound to the insoluble, proteinase-resistant fraction, presumably of amorphous aluminum hydroxyphosphate sulfate (AAHS) nanoparticles used as adjuvant. The clinical significance of these residual HPV DNA fragments bound to a particulate mineral-based adjuvant is uncertain after intramuscular injection, and requires further investigation for vaccination safety.”

    http://www.sciencedirect.com/science/article/pii/S016201341200267X?v=s5

    I’d welcome any comments on the method, etc. Obviously this is on samples of the vaccine rather than from tissue samples (as in the case for the coroner’s inquest), but it’d still be useful to hear other’s views.

  8. #8 al kimeea
    September 19, 2012

    So, who will you blame when you don’t vaccinate your child and God gives them measles and it kills the poor wee bairn, as it does 15 times an hour everyday?

    I left that at the Thoughtless Moms Christian post. How long will it thrive?

  9. #9 reasonablehank
    Australia
    September 19, 2012

    Comment left on the AVN Facebook page, under this very Jameson article:
    “I forgive myself as i was very naive but I hate THEM as they know and are still hurting other children and families and are covering it up…the SCUMS!”
    http://www.facebook.com/avn.living.wisdom/posts/270741119704088

  10. #10 Thomas
    September 19, 2012

    So many of the disease-promoters miss the good old days, when children like mine were locked away where the ‘nice’ people wouldn’t have to see them.

  11. #11 Broken Link
    September 19, 2012

    And then there are the anti-vaxxers that disappear. What has happened to our old friend J. B. Handley? He’s gone terribly silent. He’s still listed as on the board of Generation Rescue, but he’s stopped speaking out, blogging on AoA and has not appeared in the media for a long time. One wonders, one really does, about his younger child. In his case, he really believed the quacks and spoke with confidence about recovering his son. The fact that he’s so silent says volumes about how that worked out.

  12. #12 dingo199
    September 19, 2012

    I came across a response to Cathy somewhere, or did I imagine it?

    Dear Cathy,
    I know you are a parent who wants and hopes for the best for your child. Despite what you think, so do I, and everything I have ever done for Ronan has been with his best medical interests in mind.

    I know you think that his descent into autism was caused by vaccines I gave him, and that you will always believe this, despite the “evidence” being entirely circumstantial, and that there is really no valid scientific proof to backup your notion that vaccines cause autism.

    You are right, I do know more than you about medicine. I see thousands of kids, providing help, support and medical care to the best of my clinical ability. Of course I can’t know everything. But because I disregard the panoply of poor “research” that masquerades as “evidence” implicating vaccines in all manner of human ills, that does not make me “proud”, “greedy” or “lazy”.

    I totally get it that you are hurting and unable to accept the hand that fate dealt you. I know you need something or someone to blame. By focussing on me you don’t need to endure the pain of thinking about other things that might have been different, and it helps divert blame from elsewhere and erases all self-doubt.

    I know you probably think that everything you read about evil vaccines on Age of Autism and similar websites is truly factual, but it isn’t, and the sooner you take a large step back from them and concentrate your energies on things that will help you and Ronan get through the tough times you have, the better.

    I don’t need to seek your forgiveness, because I have done nothing wrong. I would of course feel devastated should a rare vaccine reaction cause permanent disability to anyone, especially a young and healthy child. But if doctors practised medicine on the basis that we never did anything to help people unless it was shown to be 100% safe, then medicine would never have progressed beyond the days of casting spells and throwing bones. As always, I do what I know will be good for my patients, and I cannot deny tens of thousands of children the real benefits of vaccines on the basis that one of them might be harmed.

    As a parent you can only think of Ronan, but I have to selflessly think of all children, not just in my practice, but throughout my entire community. If someone “doesn’t get the big picture”, it is surely you. I presume you are one of those parents who would comfortably go to sleep at night knowing your own child was safe, yet caring little for the hurt and devastation that others might be suffering. I am not like that, and I can’t do that.

    I’m sorry you have shown yourself to be so clueless and ignorant about health, disease, and the real risks facing children. I am sorry you are so poor at risk analysis and decision making. I am sorry you have foisted your ignorant views on other vulnerable and susceptible parents through antivaccine websites, making my job and that of all caring doctors much harder, and making the world a far more dangerous place for everyone’s child.

    I’m sorry your think you know so much about science, medicine and vaccines when you don’t. I am sorry you so triumphantly display the arrogance of your ignorance. I’m sorry I wasted my time trying to explain things to you when your mind was so closed to reason, when I could have been helping others instead.

    One more thing, Cathy. I can’t accept that despite what you have been told and shown, you will still promote something that will injure countless other children. Only when you consider yourself as part of a living, breathing co-existing and interdependent community, and not some unit living in isolation from everyone else will you be able to move on. Maybe one day you will come to realise how you have helped destroy the lives of others who depended upon you and your actions, but somehow I doubt it.

  13. #13 herr doktor bimler
    September 19, 2012

    On 30th August this paper was published in J. Inorg. Biochem.

    Ah, that journal again. The editor seems to have a fondness for this line of research.

    So this is the result of the research that (according to the SaneVax court filing) Lee couldn’t do because his ex-employers were not allowing him to go on using their laboratory for his private business? Still not seeing anything about negative controls. Dr Lee knows beyond doubt that his special mixture of low-temperature polymerase PCR can never produce false positives, so he sees no reason to *test* it with targets that are known *not* to contain HPV DNA.

  14. #14 Sean Jungian
    September 19, 2012

    Thank you for this post. You very succinctly lay out some things I’ve observed over and over but have been unable to articulate as well as you have. Understand, I believe the anitvaccination “movement” to be incredibly dangerous and misguided. However, as a parent myself – and even just as a human being – I have some compassion for these parents, and I do strive to understand at least partially, “What makes them do this?”

    It is easy to get so frustrated with this seeming obstinacy that I throw my hands up and ascribe the behavior to idiocy and willful ignorance. I read the two posts you mention earlier, and my first reaction (as it often is) was irritation – “How entitled can these women be? Who promised them the ‘right’ to a healthy child?” – and disgust at the martyr complex “C’mon, we all have burdens to bear, why is yours so much more incredibly difficult?” But I think you really nailed many of the reasons and motivations behind the irrational behavior.

    I cannot even imagine how I would cope if I were in that situation. I do not have a special-needs child and even so I still feel guilty sometimes for only being a “good-enough” parent and not a “perfect” one. It is oh-so-easy for me to sit back and very rationally judge these parents, yet I am not living the life they are living.

    While I feel compassionate towards these parents, and I do want to understand why they think and believe as they do, I still cannot condone the very real dangers that result from their misguided needs to assign blame, assuage their guilt, and satisfy their need for hope. Wring your hands all you like at the unfairness of it all, commiserate all you need, but stop your very dangerous dissemination of emotionally-based pseudo-science, which results in very real and damaging consequences for everyone.

  15. #15 Grant
    September 19, 2012

    herr doktor bimler,

    Regards “Lee couldn’t do because his ex-employers were not allowing him to go on using their laboratory” –

    Note the address on the paper and the date of last revision. What was the date the hospital prevented his access to the lab?

    “Still not seeing anything about negative controls.” – I take it you’ve read the paper, then?

  16. #16 Tsu Dho Nimh
    September 19, 2012

    Moreover, when millions of children receive vaccines during a the time during which autism and autism spectrum disorders are most commonly diagnosed, there will be a large number of children who exhibit their first symptoms of autism sometime around when they receive one vaccine or other.

    It used to be blamed on teething.

  17. #17 Sean Jungian
    September 19, 2012

    @Renate – interesting post. This looks like another example of searching for patterns and meaning in a random world. False dichotomy (it’s either the Christian God or Man, folks, you have no in-between, and no works of God through Man). I see she’s also using the good ol’ King James Version (here’s another group of cranks for you, btw – KJV-only-ers).

  18. #18 elburto
    September 19, 2012

    Hmm. It’s the first (and last) time I’ve ever actually clicked through to an AoA post. Are racial slurs, homophobia and Godwinning always so prevalent and unchallenged over there?

    I feel dirty now.

    Sin Hang Lee seems to be operating along the lines of Judy Mikowitz, PCRing the shit out of samples until he gets the result he wants. She’s been (finally) proven wrong, and will have to admit to her legion of AoA-like twoo-believers that XMRV was lab contamination: well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/

    There are already cries of “Cover up!” from the usual sources.

    Just as with the anti-vax crowd, some people just cannot ever bear to admit they might have been wrong.

  19. #19 elburto
    September 19, 2012

    Hmm. It’s the first (and last) time I’ve ever actually clicked through to an AoA post. Are racial slurs, homophobia and Godwinning always so prevalent and unchallenged over there?

    I feel dirty now.

    Sin Hang Lee seems to be operating along the lines of Judy Mikowitz, PCRing the hell out of samples until he gets the result he wants. She’s been (finally) proven wrong, and will have to admit to her legion of AoA-like twoo-believers that XMRV was lab contamination: well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/

    There are already cries of “Cover up!” from the usual sources.

  20. #20 Denice Walter
    September 19, 2012

    I view these two blogs as amateur efforts at group therapy. Unfortunately, rather than rewarding realistic thought they do the converse, re-inforcing unscientific ideas about ASDs and perhaps, life in general. Most of the principals involved participate in facebook as well. Spreading the gospel.

    Without naming names ( to protect the guilty), it should be noted that amongst regular contributors to AoA, TMR and the Canary cage are several (save me!) psychologists, therapists, social workers and teachers. Thus, these are not poor, un-educated, mis-guided ( mostly) women from the backwoods or outback- which makes what they are doing all the more despicable: they understand how to affect others’ attitudes effectively and proselytise in more sophisticated ways than does the average person.

    I wonder if they ever question their own choice in accepting a system of so-called thought ( ‘autism is caused by vaccines’) that is unbelievably far beyond the outskirts of the mainstream SB information.. and reason itself. To agree with this idea, you have to also accept the auxilliary suppositions that *somehow* the Truth was suppressed, which then hurtles you into conspiracy territory.

    Like our web woo-meisters ( who never met a conspiracy they didn’t like), they suffer a belief that large swaths of society- professional organisations, pharmaceutical companies, universities, governmental agencies and the media, worldwide- are irrevocably and intrinsically corrupt.
    These two concepts work hand-in-glove: the conspiracy explains why the brilliant and totally correct hypothesis is NOT part of scientific consensus and widely understood throughout society.

    So what’s a sceptic to do? Hopefully, we can counter their mis-information and downright lies, illustrating how unreliable they are as an informational source. HOWEVER, not all people make decisions based on the quality of information: emotional content and attractiveness of the messenger is very important to many- ” Oh look! These moms are *so* much like me and they are really cool!”

    I can’t understand how the coolness or hip-ness factor ever became a facet of woo and alt med.. how hip can it be to follow leaders who don’t know what they’re talking about?
    Keeping your finger on the pulse of the latest stupid idea to darken the doors of rationality?

  21. #21 Anj
    September 19, 2012

    @elburto,

    I’ve seen a lot tolerated over there – except pointing out that the assertions that their conspiracy theories are based on have no evidence to support them.

    I think it was Orac that listed the number of things that the Autism Epidemic(tm) has been compared to. I remember the list included natural disasters, actual epidemics (except H1N1 because that was all hype) and man made disasters such as war and genocide.

    You can tell the fringe sites by what they tolerate from their supporters, especially since most fringe sites are moderated. Gotta keep the dissent out!

  22. #22 dingo199
    September 19, 2012

    “Thinking” Moms Revolution:

    That means that Satan is often hiding in things that appear to be good. Things like tasty food, “life-saving” vaccines, and “healing” medicines.

    “Thinking”?
    That’s what they call it?

  23. #23 Denice Walter
    September 19, 2012

    Correction:
    … emotional content and attractiveness of the messenger ARE very important to many…

  24. #24 Science Mom
    http://justthevax.blogspot.com/
    September 19, 2012

    I’d welcome any comments on the method, etc. Obviously this is on samples of the vaccine rather than from tissue samples (as in the case for the coroner’s inquest), but it’d still be useful to hear other’s views.

    @ Grant, I haven’t read the entire paper but a couple of points stick out to me. First, the use of degenerate primers is done when casting a wide net. It’s a good starting point when you are not sure of what you are looking for and the primers are usually designed for a conserved region of a genome but that also means that many organisms can have that nucleotide sequence.

    Next, the size of the amplicon is rather suspicious for pcr/nested pcr; it’s very small and again, can contain a region that is not unique to your target organism. It’s something you would see more with real-time pcr. I have to question the author’s use of standard pcr without quantitative pcr which would also reveal how much DNA was present as that is relevant to the question of if that artifact was even significant. Then of course there is the matter of proper controls that others have observed. There is simply no justification for running your samples without them.

  25. #25 AllieP
    September 19, 2012

    My heart breaks for these mothers, and for the way they’ve latched on to a philosophy that will not do any good for their children. There are good therapies available for ASD children, and there would be more if more research and funding were funneled toward those efforts instead of yet another study beating the dead horse.

    I understand that their anger and frustration needs a place to vent, though I dearly wish they’d vent in a less harmful manner.

    If the mother in the post was let down by her doctor, it was during the “boys will be boys” talk. If her child was showing signs, the doctor was not right to dismiss them. My pediatrician is all about early intervention and OT, etc for children displaying autistic signs.

  26. #26 Vasha
    September 19, 2012

    I love the bit where K.R. says that the Holy Spirit tells her which things she reads to believe or not, and says that someone else also said they heard God and God told them that vaccines were okay — K.R. concludes that OBVIOUSLY that other person didn’t really hear God, was only confirming what they wanted to think. Really, that could never happen to K.R.!

  27. #27 JGC
    September 19, 2012

    I’m sorry your medical knowledge of vaccines paled in comparison to mine.

    After all, you only were accepted to and graduated medical school, completed a year of supervised residency, remain up-to-date with your yearly CME requirements, ect.

    I’ve been googling the interwebs…

  28. #28 lilady
    September 19, 2012

    I have to go offline for a bit…and will be back to add some of my own comments about being the parent of a multiply-handicapped son who had pronounced autistic-like behaviors.

    Let me preface this comment about the *secondary gain* that these anti-vaccine parents derive. Certainly all the editors at AoA and all the regular and *guest* journalists derive *secondary gain*, as does J.B. Handley, Jenny McCarthy and the grande dame of the anti-vaccine movement Barbara Loe Fisher.

    Here Seth Mnookin, posted about Loe-Fisher’s testimony about her son’s vaccine injury…

    http://blogs.plos.org/thepanicvirus/2012/09/13/the-whole-cell-pertussis-vaccine-media-malpractice-and-the-long-term-effects-of-avoiding-difficult-conversations/

    “At the time, Fisher was a former PR professional who’d become a full-time housewife after she’d given birth to her son Chris four years earlier. When “Vaccine Roulette” aired, it had been more than a year since Chris had started displaying symptoms of what would eventually be diagnosed as a range of developmental disorders. I wrote about Fisher’s reaction to Thompson’s broadcast in my book:

    It wasn’t until she saw Thompson’s broadcast that the pieces fell into place. The reactions that Thompson described—convulsions, loss of affect, permanent brain damage—were, Fisher realized, identical to those experienced by her son. Suddenly, Fisher remembered in meticulous detail what had happened one day eighteen months earlier, when Chris had received the final dose of his DPT vaccine:

    When we got home, Chris seemed quieter than usual. Several hours later I walked into his bedroom to find him sitting in a rocking chair staring straight ahead as if he couldn’t see me standing in the doorway. His face was white and his lips slightly blue, and when I called out his name, his eyes rolled back in his head, his head fell to his shoulder and it was like he had suddenly fallen asleep sitting up. I tried, but could not wake him. When I picked him up, he was like a dead weight and I carried him to his bed, where he stayed without moving for more than six hours, through dinnertime, until I called my Mom, who told me to immediately try to wake him, which I finally did with great difficulty. But he didn’t know where he was, could not speak coherently and couldn’t walk. I had to carry him to the bathroom and he fell asleep again in my arms and then slept for twelve more hours.

    It’s an incredibly moving story, and one that Fisher has told to congressional panels, federal committees, and state legislatures, and at national press conferences for more than twenty-five years. In all that time, she’s almost never been questioned about the specifics of her narrative—and there are parts that, if nothing else, certainly are confounding.~ Fisher, as she told an Institute of Medicine (IOM) Immunization Safety Committee in 2001, is “the daughter of a nurse, the granddaughter of a doctor, and a former writer at a teaching hospital” who viewed herself as “an especially well-educated woman when it came to science and medicine.” How was it that her only response to finding her unresponsive son displaying symptoms associated with heart attacks, strokes, and suffocation was to carry him to bed and leave him alone for six more hours? And if Chris’s reaction to his fourth DPT shot was so severe that it transformed an ebullient boy into a sluggish shell of his former self, why had he been fine after receiving the first three doses?

    Shortly after the formation of Dissatisfied Parents Together, Fisher founded the National Vaccine Information Center. Since then, she’s played an essential role in organizing a movement that’s targeted the press, politicians, and the public in equal measures. The result has been a steady erosion of vaccine requirements and a steady increase in the percent of the population skeptical of vaccine efficacy. ”

    IIRC..Loe Fisher’s son was not diagnosed with autism, at an earlier age (I believe his diagnosis was ADD or ADHD). Is he now diagnosed with autism? The *miracle* of diagnostic substitution.

  29. #29 Narad
    September 19, 2012

    Just cookie-setting, pardon me.

  30. #30 Bridgette
    September 19, 2012

    Don’t sell yourself short on reaching people/parents who are hardcore anti vaxxer’s.

    I used to be hardcore against vaccines. My situation into the anti-vaccine world was different from most people, but in the same vein. My autistic brother died at the young age of 5, of unknown causes, in his sleep. Shortly after that, I got a job at a clinic that spews anti-vaccine philosophy. They told me that the probable cause of both his autism and death was more then likely vaccines. Since I was still in shock and in a search for the cause, I took it all. I was furious with doctors. Furious with most of the medical world. I blamed it all on them. I swore I’d never vaccinate my own future children. I was paid to give out anti-vaccine literature, spout the myths to paying parents, and listen to anti-vaccine lectures. I was ready to blame anything that sounded even remotely plausible in order to soothe my own guilt. (Even though I had absolutely no way of preventing or stopping it)

    Fast forward nearly 10 years, and here I am. My daughter just got her most recent round of shots a few weeks ago. I eventually came across blogs like this one and did my own research. I took more university science courses. My husband is currently in nursing school at WSU, full of more knowledge then me and ready to answer all my questions.

    It took a whole lot of courage to realize that I’ll probably never know the cause of death, but realizing that made me come to more realizations. I had been hiding all my fears behind a lie. Maybe your blog wont reach many, and certainly quite a few will just become offended and put up defenses, but you do reach some.

  31. #31 Anj
    September 19, 2012

    @lilady

    Oh. my.

    If I had seen those signs in my child, I’d be sprinting to the phone with him in my arms to call 911.

    Blue lips? Eyes rolled back? Pallor? Unresponsive?
    “slept” for six hours?
    Was incoherent when she could finally rouse him?
    And then collapsed for twelve MORE hours?

    Words fail, although Mnookin does a great job of detailing the contrasts.

  32. #32 Anj
    September 19, 2012

    @Bridgette,

    I’m so sorry you lost your brother.

  33. #33 Denice Walter
    September 19, 2012

    It never fails to amuse me ( although I might be simultaneouly horrified) when I discover contributors at AoA or at TMR presenting their speculative stylings on physiology:
    Teresa Conrick, a specialist in this trade, has an article ( @ AoA, yesterday) that illustrates her own take on ASDs. Surprise! Hg is involved.

    Professor ( @ TMR, today) an electrical engineer** informs us that the problem lies with groddy, old synapses and dodgy, old, frayed dendrites… like so many aged electrical cords.. which we can of course repair ( with supplements) and re-route. She also provides a close-up glimpse of Son-Rise therapy.
    I almost can comprehend why these women need to believe so much: to justify all of the supplements they purchase and the time they spend in alt med therapies.

    I swear, I’m not making this up!

    ** shades of Simon Baron-Cohen!

  34. #34 Dangerous Bacon
    September 19, 2012

    Haven’t had the urge to look, but I wonder if they’re observing “International Talk Like A Pirate Day” over at AoA.

    “Ye’ll walk the plank yet, Paul Offit, ye scurvy dog! Arrrrr!!!

  35. #35 Alia
    September 19, 2012

    On a side note, something that has bothered me for a while. It’s easier to be pro-vaccine in a country where your vaccines are covered by your insurance or paid for by the state. In my country, only mandatory vaccines are available for free, you need to pay for all the others. With flu vaccine is not a problem, it costs approximately 12$, I’ll gladly pay for it. But hepatitis-B vaccine (free only for children, you need to pay for your boosters) is 30$ a dose (need to get it next year, what a drag), TDaP booster is 60$, chickenpox vaccine is 80$ and anti-HPV vaccine is 120$ a dose. No wonder that over here general attitude towards recommended vaccines is “It’s Big Pharma again, they want to take our money”.

  36. #36 dedicated lurker
    September 19, 2012

    That means that Satan is often hiding in things that appear to be good. Things like tasty food

    Hmm. I wonder if Satan is hiding in any of the food I have at home. Like the chicken cordon bleu. Or the cupcakes. Or hey, maybe Satan’s in the yogurt. Or if he’s uninventive, the barley or the rice.

  37. #37 Jay Chaplin
    University of Washington, Seattle
    September 19, 2012

    @Grant, 6:40 AM

    I cannot tell whether Dr. Lee is either incredibly ignorant or whether he believes everyone else on the planet is ignorant enough to miss blatant misrepresentation. The paper you asked about is impressively bad on all levels: design, execution, interpretation, and basic understanding of the systems.

    In addition to Science Mom’s very valid comments at 9:49 AM, here’s a small list of the glaring problems I found while reading the paper…

    First, even if what he claimed were true, it is not HPV DNA. It would be DNA coding for the HPV L1 proteins of strains 6/11/16/18 codon-biased for yeast and with yeast promoters and initiation sequences. This would not be able to be transcribed or translated in humans. Even if it were… The L1 protein is not an oncogene, the E6 and E7 proteins are. Multiple fail.

    Dr. Lee does not assay for any other HPV genes, there is no way to determine whether what he is looking at is yeast DNA coding for HPV or environmental contaminant actual HPV DNA. I suspect the latter because the HPV L1 sequence he found from strain 18 is of African origin. He does some handwaving later to say that this is a good thing and proves he’s accurate because the sequence used in Gardasil is “related to an African subtype” – as if “related to” same as… We’ve got sequence data here folks, it is easy to see that this is a primary African HPV sequence and not a “related to” African vaccine sequence. This screams environmental contamination, which he did not control for or assay for. This is a serious concern as his positive control showed that he amplified and counted as a positive result as little as one molecule of template. One molecule of contaminant is all it takes to create a false positive folks. He does not specify whether he did this under laminar flow conditions with UV to reduce contaminants but unless he did someone walking down the hallway two months ago could be the source of the results he’s reporting.

    He waves his hands some more about how different DNA can be “stabilized” to different degrees by binding to aluminum. Please read the citations for these, they say the opposite of what he asserts. First, the difference is caused by the chemistry of the aluminum and NOT by the DNA, and specifically is to the phosphate backbone and NOT the bases – there is no mechanism here for distinction between HPV genes based on sequence as he claims. He tries to use this to justify why he sees HPV 11 and 18 sequences but not HPV 6 and 16 sequences. Nope, fail on multiple levels. He sets himself up for this by only using the 45-60 bases he likes best from the sequencing to do the BLAST search. That’s cheating, he should use the whole sequence to BLAST to show accuracy and that there are a low number of PCR-induced mutations.

    This is compounded by the fact that he sees bands with his more restrictive primer sets but not with his less restrictive primer sets… So, by analogy, I can’t observe any women in a population but somehow I can observe redheaded blue-eyed women? This points to a major flaw in his methodology which he sweeps under the rug.

    His assertion about the DNA being tightly bound to the alum is seriously flawed. If you go back to the referenced paper you will see that to extract DNA from the VLPs they had to heat them to 100 degrees C THEN treat them with Proteinase K at 55 degrees – he does not do this, he treats with ProK, separates supe and pellet assuming ProK digests every protein apart (which it doesn’t), THEN separately heats the supe and pellet. Folks, heating the VLPs is the key to disassembling them and getting the DNA out, the ProK treatment just keeps them from reforming. He never actually id the VLP extraction process on the VLP/alum mixture so he can’t say that the DNA was bound to alum – the VLPs were still there and intact.

    Finally, his understanding of the chemistry of aluminum compounds, DNA, and their mixtures is seriously flawed. He keeps referencing Al3+, there is no Al3+ in alum or its breakdown products. The Al in AAHS is tightly bound to hydroxide or phosphate when first made, and when dissolved by the action of organic acids in the extracellular matrix following injection becomes a stable complex of Al and citrate. The papers he cites for Al / DNA interaction largely use soluble Al3+ as their starting point and are irrelevant to his claims. He then bungles his whole section on electrostatic interactions between Al3+ and DNA, including assuming the behavior of the polyphosphate DNA backbone from that of AMP, complete chemistry fail. One of the papers he references does actually report the interaction between DNA and various alum formulations and shows that pretreating the alum mixture with phosphate decreases or eliminates the binding to DNA, oops, that invalidates rather than supports his assertion as the Gardasil AAHS formulation is made with excess phosphate. Finally, he appears to be ignorant of the basic chemistry of DNA. Everyone, the DNA backbone is so stable because it is highly charged – the hydroxyl attack you need to break it is prevented by the large local negative charge of the repeated phosphates. DNA in water in a tube with no di or trivalent metal ions around is stable for decades. Add a whiff of calcium, magnesium, iron, or ALUMINUM and the breakdown rate accelerates more tan ten thousand fold. If what he were claiming was true, that there was DNA bound directly to the alum adjuvant, it would be so unstable as to be gone before he could assay for it. This is basic chemistry folks, controverting this is about as plausible as “dilution makes things stronger”.

    I could go on, but I need to get back to actual research rather than reading fiction.

  38. #38 lilady
    September 19, 2012

    I have little patience for these parents who, in spite of the many years that have elapsed since their childrens’ diagnoses of autism, still are positioning themselves and their autistic children as “victims” of “the man” (the evil CDC, the evil doctors and nurses, the evil immunology researchers, the evil *Big Pharma*, the evil science bloggers and the evil researchers and on, and on).

    There is “Secondary Gain” and notoriety by positioning oneself as the parent of an autistic child. Look at Jenny McCarthy who revived a moribund career as a D-list celeb by claiming Evan was injured by a vaccine. Look at Dr. Jay Gordon, and Dr. Joe Mercola whose pseudoscience provides them with a shot at celebrity, by pandering to credulous parents. Look at all the yellow journalists at AoA, many of them parents who have made the *career* choice to capitalize on their kids autism.

    The moronic parents who support these anti-vaccine organizations label their kids as “train wrecks” who were stolen from them, because they were *damaged by vaccines* That gives them the justification, indeed even the right, to attempt to *treat* or *recover* their kids but shoving bleach up their kids’ bums, by chelating them, by chemically castrating them and by subjected these innocent and defenseless kids to other gawd-awful treatments, such as intrathecal IV stem cell treatments at off-shore clinics.

    By writing pseudoscience articles for the anti-vaccine websites and by commenting on these same websites, these parents derive *secondary gains* by playing the parts of martyrs and continuing the *pity me* shtick to the detriment of their kids.

    What to me is the most outrageous result, is that these dreadful people have dissuaded new parents from getting their babies immunized. Unforgivable and inexcusable.

    Reuben at The Poxes blog has just written an excellent article about these anti-vaxxers:

    http://thepoxesblog.blogspot.com/

  39. #39 lilady
    September 19, 2012

    @ Bridgette: Welcome to Respectful Insolence and thanks for sharing your experiences with us.

    Your mom never wanted you to learn life’s lessons early on. Just like I never wanted my daughter to learn that often life is not fair and that circumstances beyond our control sometimes brings a baby with special needs into our lives. Just remember…

    “Life is what happens to us while we are making other plans”
    -John Lennon

  40. #40 Grant
    September 19, 2012

    @Jay Chaplin,

    Thanks for the detailed thoughts.

  41. #41 herr doktor bimler
    September 19, 2012

    Jay Chaplin @5:41 pm
    The paper you asked about is impressively bad on all levels: design, execution, interpretation, and basic understanding of the systems.

    The crucial part of the paper is (to my mind) the COI declaration:
    This study was commissioned and sponsored by SANEVAX, Inc
    Dr Lee’s partners / employers were quite clear in advance about what they expected him to find, i.e. “Aluminium bad”, “Gardasil bad”.

    SaneVax are already circulating an open letter claiming to have “read the advanced copy of a scientific report authored by Dr. Lee”, as if they stumbled across the research by accident, rather than having *commissioned it*.
    h_tp://lecafpolitiquedecamusdecaf.blogspot.com/2012/09/gardasil-this-letter-requests-copies-of.html

    [they also claim to have “read the news report about Dr. Sin Hang Lee’s testimony delivered to the coronial court in New Zealand”, without noting that they paid for that testimony]

  42. #42 elburto
    September 19, 2012

    Bridgette – sorry for your loss, and again for the fact that dishonest people took advantage of your grief. But welcome to RI!

    lilady – every time I see that story about BLF’s kid I feel ill. I truly hope it didn’t happen like that, because wow, how could someone essentially have her kid unconscious for the better part of a day and do f*** all about it?

    If it is true, it sounds as if the poor lad’s had some sort of cardiac or respiratory issue that’s led to anoxia-induced brain trauma, not autism.

    Jay . thanks for the thorough debunking! I love this place.

  43. #43 lilady
    September 19, 2012

    @ elburto: I’ve never read Babs’ book, but we have Seth Mnookin’s blog which details her actually testimonies in front of various government hearings. She is *bending the truth, somwhat*. If she isn’t *bending the truth, somewhat* then she is truly an example of the worst parenting skills, a mother has ever admitted to.

    She reminds me of a troll who has posted at RI and now inhabits, with her sockies, another science blog. This mother claims her child suffered vaccine-induced encephalitis. That *case of encephalitis* was never diagnosed by a physician, her child was never seen by a physician during the *encephalitis incident* and the mother made the *diagnosis*.

    Babs and her ilk are dangerous reckless people who have made their careers on the backs of their children who have disabling disorders.

  44. #44 Grant
    September 19, 2012

    herr doktor bimler,

    re your last thoughts: “[they also claim to have “read the news report about Dr. Sin Hang Lee’s testimony delivered to the coronial court in New Zealand”, without noting that they paid for that testimony]”

    Just to be clear – do you mean the testimony presented in the coroner’s inquest and do you have evidence that they paid for that testimony, or the testimony was done on SANE Vax’s behest (paid or not). If so, you’d want these to have been formally declared to the coroner. One thing that I was struck by was the speed at which SANE Vax reported Lee’s testimony at the time. (On a related note, I’d also like to be reassured if or not that SANE Vax paid for (or offered a ‘payment in kind’ arrangement) for the tests done on Jasmine Renata’s samples.)

  45. #45 herr doktor bimler
    September 19, 2012

    Just to be clear – do you mean the testimony presented in the coroner’s inquest and do you have evidence that they paid for that testimony, or the testimony was done on SANE Vax’s behest (paid or not).

    That is what I mean.

    Frompovich interviews Erickson of SaneVax:

    “…from what you know of Dr. Lee’s research, can you please share with us what he found after his pathological examination, since he is under contract to SaneVax and you are the owners of the research?”
    “I can discuss it to the best of my ability.”

    http://www.activistpost.com/2012/08/gardasil-vaccine-rdna-introduced-at.html

  46. #46 Narad
    September 19, 2012

    The entirely gratuitous use of the registered-trademark symbol is a nice touch on that Frompovich joint.

  47. #47 JaneW
    Jersey
    September 19, 2012

    I used to try to politely discuss the matter with people over at Mercola’s nuthouse, until the mods kicked me off the site. I think it was the time I politely pointed out that a book written in 1920 probably wasn’t the best source of information about stuff invented after 1920. Anyway, here’s what seemed to work best in reaching the “in betweeners.” No numbers. No data, no facts. They don’t trust it, they have no reason to believe “my” facts over someone else’s. Instead, I told them the truth.

    My grandmother had two older siblings who died as babies, probably from whooping cough. They weren’t born in dire poverty, they were born in England in the 1920s. They were wanted and loved and cared for, they just died, the way babies used to die about one time in three.

    My great-grandparents left England behind, raised four more children, healthy ones, but she never really got over their loss. Sixty years later, she went back to visit her brother, and she asked to see the graves. He told her, “There’s no marker, you won’t be able to find them.” She led him straight to an unremarkable corner and told him, “This is where my children are.”

    The devil can quote scripture, and anyone can toss numbers around. What people want is the Truth.

  48. #48 Narad
    September 19, 2012

    Are racial slurs, homophobia and Godwinning always so prevalent and unchallenged over there?

    Check out today’s “From the Editor.” Commenter “no vac” offers the following:

    Monsanto and drug companies have Nazi Germany origin. Their main goal is to exterminate most Americans and other “undesirable” for Nazis nations. So far they are successful, as >60% of American children have some type of chronic disease, which may and probably will, kill them. That Monsanto criminals will try to denigrate this study, it is to be expected, as they have the same modus operandi as pharma criminals.

    The audience speaks for itself.

  49. #49 herr doktor bimler
    September 19, 2012

    The entirely gratuitous use of the registered-trademark symbol is a nice touch

    Not having looked closely, I had assumed that it was a subliminal advertisement for pretzels.

  50. #50 Narad
    September 19, 2012

    AoA Godwin rewind:

    German people do NOT vaccinate their children, because they know that vaccines are designed to kill and cripple; they know Nazi work on vaccines. All vaccinations are voluntary in Western Europe. Only Americans are forcefully being killed and crippled by vaccines. All major US pharma companies were created with Nazi money by Nazis to destroy Americans and the US. Recent reports show that fertility of young women in US has dramatically declined (most likely due to vaccinations with HPV vaccines). We see massive depopulation and crippling of Americans in making.
    http://www.whale.to/b/nazi_allopathy.html

    Posted by: veritas | November 19, 2011 at 01:58 AM

    You’re right Veritas and I’m glad you see the connection too. Pharmaceuitcal companies have strong historical ties to the Nazis. In fact they are fullfilling the Nazi dream of a master race only in a much more sophisticated way. Now that the Autism Genome Registry is established, I predict we will see an increase in genetic screening using the DNA info collected from our kids. We also see a demand for pre-genetic diagnosis (PGD) of embryos for those parents who want the genetically perfect child. A GATTACA future for sure.

    Posted by: Sarah | November 19, 2011 at 08:00 AM

    Yah, they have no problem whatever with this.

  51. #51 alison
    September 19, 2012

    The NZ Immunisation Advisory Centre (University of Auckland) has some strong words to say </a)about the 'expert witnesses' in the Renata coronial enquiry.

  52. #52 alison
    September 19, 2012

    Drat, wrong bracket closure! Sorry…

  53. #53 lilady
    September 19, 2012
  54. #54 Christine
    In the public service still
    September 20, 2012

    @Narad:

    Ahhh, whale.to. I’ve been there once, and I honestly thought it was a massive and thoroughly clever hoax. Then I realised it was real. I had to act quickly to stop my head exploding.

  55. #55 lilady
    September 20, 2012

    Christine…warning this site really could make your head explode

    http://rense.com/

    Yup, it’s all there…anti-science, chem trails, NWO, the Bilderberg conspiracies, global warming denialists, 9-11 denialists, the birthers, the Nazi *connections* etc., etc.

  56. #56 dedicated lurker
    September 20, 2012

    Christine, did you see the “dolphins can fly” page? There’s also a page about the Cold War being a hoax. My sister and I made up a conspiracy theory about the Cold War being a hoax on the grounds it was so ridiculous no one could believe it. The only difference in the whale.to version was that they claimed it was politicians, and ours was made up by historians after the fact.

  57. #57 Spectator
    September 20, 2012

    @ elburto
    September 19, 9:12 am

    According to the newspapyrus, Mikovitz has declared that her original XMRV findings were in error, and has repudiated her XMRV theory.
    There’s always a few nuts around, and they’re always noisy. They tend to like the letter X and vaguely science-y sounding things. One can’t fix their delusions, best to distract them with a UFO doll.

  58. #58 Grant
    Should be writing blog posts... (ha)
    September 20, 2012

    lillady, Alison,

    Thanks for the link. There’s some firm slaps about the face in the IMAC commentary, e.g.

    “Using only passive reporting data in the way that Tomljenovic, Shaw and Lee have done suggests they are either deliberately trying to mislead or have very limited understanding of basic epidemiology and vaccine safety surveillance.”

    Then there’s the section titled ‘Scientific credibility of Drs Shaw and Lee’.

    “This repeated failure to use the scientific method to assess the safety of vaccines and aluminium draws the scientific credibility of Dr Chris Shaw into serious question.”

    And so on. Worth others here reading.

    (Personally, I think there is a lot more that could be added but I suspect it’ll partly be that these points are clearer for a general audience – ?)

  59. #59 lilady
    It's the wee hours of the morning here in the USA
    September 20, 2012

    Grant:

    Don’t thank me…Alison found the opinion…I linked to it.

    How about this from the IMAC Commentary?:

    The ‘Experts’

    Scientific credibility of Drs Shaw and Lee
    Dr Shaw has published two pieces of rodent research on the role of aluminium in neurological damage and several reviews (funded by anti-immunisation lobby groups) on the safety of aluminiumadjuvants in vaccines (1, 7-9). These review articles are not original research and simply cite a range of material that appears to support a pre-established position. This is not scientific. There are many articles published that use a systematic approach to evaluating the safety of vaccines and review articles meeting a strict set of criteria for quality that address a particular research or clinical
    question. This repeated failure to use the scientific method to assess the safety of vaccines and aluminium draws the scientific credibility of Dr Chris Shaw into serious question.

    Dr Lee appears not to have been employed by the Milford Hospital in Connecticut since 2010 and he has filed a lawsuit against the hospital claiming wrongful termination (http://sanevax.org/dr-sinhang-lee-a-case-study-in-ethics-dont-pay/). Despite this, his name is still being used in association with Milford hospital (http://www.stuff.co.nz/dominion-post/news/7445193/Foreign-DNA-foundin-teenagers-blood ) . Dr Lee has made some erroneous statements about the Gardasil vaccine and also has a major conflict of interest.

    • Dr Lee claims that the Gardasil vaccine trials demonstrated an increased risk of cervical disease if women were already infected with the virus.

    • Dr Lee therefore recommends a test prior to women receiving HPV vaccine. He offers a service on line (for a USD$50 fee) to test them for evidence of existing HPV infection.
    http://sanevax.org/pre-vac-hpv-testing-2/
    http://www.weeklyblitz.net/949/dr-sin-hang-lee-joins-forces-with-sane-vax-inc-in

    There are two serious issues here.

    • Firstly, the trials did not demonstrate an increased risk of cervical disease in vaccinated women who had pre-existing infection. The fact is there was a cluster of women in a substudy with pre-existing infection who appeared to have an increased risk after vaccination. However on careful examination of that small study and of all the other studies it was found that the vaccinated group had different baseline risk factors such as smoking which probably contributed to this anomaly. Apart from the small sub-group the rest of the trials did not find any increased risk.

    • There is a conflict of interest when Dr Lee profits from the proceeds of the testing he recommends. He is the President and a shareholder in HiFi DNA Tech (http://www.hifidna.com) which provides the tests he recommends. Dr Lee’s criteria for this HPV DNA testing and its use in clinical decision making have been highly criticised by other pathologists (10).

    Hmmm, I wonder which blog had posts that dug up all this information about these two *researchers*?

  60. #60 Krebiozen
    September 20, 2012

    German people do NOT vaccinate their children, because they know that vaccines are designed to kill and cripple; they know Nazi work on vaccines. All vaccinations are voluntary in Western Europe. Only Americans are forcefully being killed and crippled by vaccines.

    Do the people who write this garbage assume that no one is going to take the 30 seconds that it takes on Google to find out they are lying? German people most certainly do vaccinate their children.

    Writing from Western Europe, it’s funny how often I read American nuts claiming that all sorts of wonderful alternative therapies are in routine use in Europe, like ozone, or the Budwig protocol, for example, which comes as news to me. Conversely I often read European nuts and even the mainstream press claiming that America has all these amazing cancer treatments that are denied to us in Europe, Burzynski’s antineoplastons for example. Hopefully not all the patients sent to the US with money donated by kind-hearted strangers were the victims of quacks, but I do wonder. The grass is always greener, I suppose.

    Incidentally, there have been stories in the UK press recently about MMR-damaged children. A closer look reveals that they are about the “rogue” Urabe mumps component, no longer in use in the UK or the US, which did damage some children as it rarely (much more rarely than mumps itself) causes encephalitis. There is no legal aid money for those affected to seek compensation, as it was all spent on a wild-goose chase pursuing the measles component, and mostly ended up in the pockets of lawyers and doctors including, of course, our old friend Andrew Wakefield.

  61. #61 lilady
    September 20, 2012

    Talk about the lowest of dirty tricks.

    Anne Dachel blogged yesterday at AoA disparaging high school kids who filmed a documentary about vaccines. She linked to the local newspaper where she has blitzed the blog with her vile remarks and asked her syncophants to join her on the local newspaper’s comments page, here…

    http://www.nctimes.com/news/local/carlsbad/carlsbad-award-winning-broadcast-class-tackles-documentary-on-vaccines/article_fea569b4-4093-51e8-ab19-45abe06add48.html

    Dachel asked for him and the sycophants obliged here…but I also *helped* her as well. I need some additional help, so consider signing on to the blog (no Facebook account is necessary) and sticking it good to Anne and her colleagues, to defend this high school kids and their excellent documentary.

  62. #62 T.
    September 20, 2012

    About what Narad had quoted: in my country, Italy, vaccines are mandatory. Hepatitis and HPV included.

  63. #63 Christine
    Now in my study talking to the cat
    September 20, 2012

    Err, lilady I won’t be going to check out that site. My study is already messy enough, what with notes about dark ages industry, dress pattern pieces, cables and crap lying about. Adding exploded brain matter just sounds like too much. Aside from which sudden loud noises disturb the cat and that’s just rude.

    And dedicated lurker – maybe I dismissed whale.to too quickly if they have a page about flying dolphins (I hightailed it out of there when I read all their holocaust denial pages). But getting back to the flying dolphins, there’s a Weekly World News story about flying dolphins, so it must be true!

    http://weeklyworldnews.com/headlines/45889/flying-dolphins/

  64. #64 Rebecca Fisher
    That London
    September 20, 2012

    Orac wrote about Whale.To and Scopie’s Law a couple of years ago.

    http://scienceblogs.com/insolence/2008/06/14/the-nuttiness-that-is-whaleto/

  65. #65 Todd W.
    http://harpocratesspeaks.com
    September 20, 2012

    @lilady

    Those students are awesome. As for commenting on the story, I think there’s a place for both countering the misinformation by the dachelbots as well as praising the class for taking on this project.

  66. #66 Darwy
    Røde grøde med fløde
    September 20, 2012

    @Science Mom and others

    With regards to Lee’s work – I stopped when I saw no negative control.

    @Jay Chaplin

    Can I just say how much I love you? Someone else that gets the chemistry of Lee’s fail?

  67. #67 Denice Walter
    September 20, 2012

    I adore how anti-vaxxers will go to any lengths to cast aspersion on vaccines AND to declare victory for their hero:

    John Stone ( today @ AoA) manages to convince himself that recent events in the long and winding saga of AJW are worth cheering about: Zosia Zmietowicz ( BMJ) writes that UCL will not inquire into the Wakefield affair. Stone misses the point that the university DID issue new research standards in response to findings about AJW..

    He calls this a defeat for Dr Godlee and BMJ who had called for a further investigation. Stone wonders why Kmietowicz doesn’t mention the exoneration of Walker-Smith because he believes that Justice Mitting “established with legal force that many of the accusations of Deer,…, were without foundation”. Really? Where was that?

    BMJ also didn’t publish David Lewis’ incredible analysis: Lewis has “won the day” crows Stone.

    Somehow I see a much different picture than John does. I think that the future ( especially after the dismissal of AJW’s suit in Texas) appears grim. John is trying to scrape together whatever he can to create a brighter scenario for his readers. As they say….” If life gives you lemons, make lemonade”… however, the drink he has created seems more a concoction to make you forget and dream sweeter outcomes than what is currently at hand. Probably has an opiate in it to kill the pain. ( metaphorical opiate)

    -btw- I have interacted with Mr Stone and surprisingly, he was rather remarkably civil to me despite my obviously clashing views to his own. Will wonders ever cease?

  68. #68 Mu
    September 20, 2012

    I’m still trying to figure out the Nazi connection for Monsanto. Seems it was always an US company, which is now owned by Pfizer, another US company, which was famous for making penicillin for US soldiers during the war. Anybody know the six degrees of KB that get that connection?

  69. #69 lilady
    September 20, 2012

    Mu…I dunno…but I bet Jake Crosby could *bring it on home* for you, with less than six hundred degrees of separation.

  70. #70 Narad
    September 20, 2012

    Anybody know the six degrees of KB that get that connection?

    The aspartame version is America First Committee -> G.D. Searle directors -> Monsanto, with all kinds of aimless MK-ULTRA, Manhattan Project, Jonestown, etc., sprinkles on it. There’s also a Codex Alimentarius/fluoridation one that it’s far too early for me to try drinking my head around.

  71. #71 elburto
    September 20, 2012

    @Narad – Wow. Just… wow. I’m not going to give my actual response as it would make the profanity filter implode.

    @Spectator – Don’t you know, St Judy Mouskowitz is being forced to retract it, by teh BiG pHARMa!!!!!!11

    Sadly, I was banned from said forum before I copied the rant. I bet that particular take on it’s easy to find all over the interweb though.

  72. #72 Heliantus
    September 20, 2012

    @ Mu

    I’m still trying to figure out the Nazi connection for Monsanto.

    Come on, Pfizer, it’s German-sounding. Ergo, it’s Nazi.
    /silly mode

    Frankly, it’s stunning. Here in Europe, Monsanto is seen as the quintessential evil US corporation. Arrogant, greedy and reckless, yes, but Nazi? That’s a label I was unaware of.
    It may be the Fox News effect: anyone not on your side is a commie/ a fascist / a renegade / an apostate (strike out the irrelevant answers)

    OK, full OT mode:
    I suppose Mansanto came recently in the spotlight because of a recent publication about the effect of GMO maize on rats (preceded by a big press conference)?
    It’s funny, it’s just starting to gather momentum in the mainstream news, but apparently it’s already a known topic in anti-vax forums.

    For the curious, this paper on GMO food could be found here.
    I’m not sure what to make out of it. The sample size (10 rats per group) seems a bit low for statistical relevance. But I don’t know enough about the topic to make a sound judgement.
    I also wish the journalists and critics from my country would have linked to the paper, instead of going for sensationalism and half-quotes (and this goes for both sides of the debate).

  73. #73 Grant
    September 20, 2012

    Alison, lillady, etc.

    The local media is carrying it too:

    http://www.stuff.co.nz/national/health/7709965/Cervical-cancer-vaccine-link-to-death-disputed

    Lillady, you wrote “Hmmm, I wonder which blog had posts that dug up all this information about these two *researchers*?” — or, who is passing things from here on? (In addition I dug up the odd bit myself, posted as comments in my blog, and others here at RI and on their own blogs have done likewise. herr doktor bimler has a blog post on this up, for example, in his usual very eclectic style – look for the ‘riddled’ blog on blogspot.)

  74. #74 Roger Kulp
    September 20, 2012

    Moreover, when millions of children receive vaccines during a the time during which autism and autism spectrum disorders are most commonly diagnosed, there will be a large number of children who exhibit their first symptoms of autism sometime around when they receive one vaccine or other. Yes, as hard as it is for human beings to accept, this can be coincidence alone. To demonstrate that it is not, that correlation might imply causation, it’s necessary to do carefully controlled studies of large numbers of children, controlling as well as possible for confounders, to see if vaccination in general or specific vaccines are associated with an increased risk of autism.

    I keep wanting to go back to the point that children who are prone to autistic regression,will regress sooner or later any way,and a good,old fashioned naturally produced fever will do the job just as nicely,thank you.But so many of these diseases have been so well controlled by vaccines in the population at large,vaccines are often the first exposure children get.

    I am proof not only of this,but what researchers have only learned in the last couple of years,about autism being noticeable in the first year.

    I am one of those who was diagnosed with autism,after the DSM-IV came out.I have explained this here before.I have a psychiatric diagnosis history similar to this man’s son has.I am a few years younger,though.I had all sorts of developmental,learning disability,diagnoses,and a ridiculous number medical issues,like a lot of the kids parents at AoA go on about.I know lilady talks about autism as a “diagnosis du jour”,and there are far too many who are barely on the spectrum,who are not obviously autistic.who should not be diagnosed.When I was diagnosed,as an adult,I was considered worse than Asperger’s,but not quite classic autism.I would have been in the more severe category,had I been evaluated as a child.

    When I was six months old,I had acute meningitis,with pulmonary complications,most likely pneumonia.Something now vaccine preventable.I was in the hospital almost two months.I was one of the last patients in this hospital to be put in an iron lung.

    My mother always told me,I came out of the hospital a different baby than I went in.I had lost eye contact,I lost ability to grasp objects,did not do social playing,and the head banging started fairly soon thereafter.A lifelong pattern of regression,gains,regression started.One that only ended after I started on high dose leucovorin in the last couple of years.

  75. #75 lilady
    September 20, 2012

    Narad…Heliantus…Mu: I proclaim myself as the reigning queen of the Kevin Bacon Six Degree of Separation Game- (Jake Crosby Rules)

    Alex Cranberg is Jake’s mother’s brother. He is a Regent on the University of Texas Board of Regents http://www.texastribune.org/texas-education/higher-education/controversial-ut-regent-hopes-to-push-reset-button/

    I found Kevin Bacon at the University of Texas-Austin http://www.utexas.edu/lbj/directory/faculty/bacon-kevin

    How’s that for Bob’s your uncle or Alex’s your uncle?

  76. #76 lilady
    Where it is still September 20th
    September 20, 2012

    @ Grant…What a delicious article…I’m just delighted with the *publicity* these two *scientists/researchers* have garnered for themselves.

  77. #77 herr doktor bimler
    September 20, 2012

    The local media is carrying it too
    Also relevant in the NZ news — a biography of Swee Tan (the surgeon who rebuilt a skull for the woman whose scalp cancer had been ignored by her iridologist).

  78. #78 Grant
    September 21, 2012

    herr doktor bimler,

    Ah, she’s finished her book. I can remember the media covered her setting out to write it.

    I like this: “I thought it would take about three weeks, the whole process, but it’s actually been over a year.”

    and the excerpt they quoted:

    “Imagine you are a child, born in a small Malaysian village, to a poor family. You are one of 14 children. Your mother never went to school and your father only attended school up until the age of 10. You love your mum and dad, but you don’t want to be poor like them, with few opportunities. You want to become a doctor, but people around you say, ‘You can’t be a doctor. Look at your hands. They’re rough and dirty.’ This doesn’t stop you. It just makes your dream even stronger.”

    I might give it wider airing on my blog over the weekend.

  79. #79 dusonfnp
    September 21, 2012

    I had a strange one earlier this week. One family does not vaccinate because vaccines are created through the use of animals. Not animal testing, which they apparently have no trouble with, but through the use of animal blood, and, I quote, “the life of an animal is in its blood.” The whole family has a myriad of psychiatric issues; the closest one to normal is the fully vaccinated 10-year-old boy who is unrelated to the rest of the kids, who are all unrelated to either mother or father; it’s an unusual situation. I was able to get them to agree to Tdap for the 10year old girl who had a pretty good leg laceration from her bicycle. I’m hoping that they’ll now bring in the rest of the kids for that one, at least.

  80. #80 Grant
    September 22, 2012

    Speaking of fear and vaccines, the top page of the New Zealand Herald website currently has a sidebar title, Swine Flu Vaccine Dangers (my italics). This links to a story about a possible link to narcolepsy.

    http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=10835762

    Needless to say, I’ll be tracking that down later. This idea isn’t new, so I presume something new has prompted the media to pop out with it now. (It’s also reminded me that Northern Finnish people have especially high rates of myotonia. Associative memories…)

  81. #81 Renate
    September 22, 2012

    @Grant
    That case in Finland was in the news as well. I think in the end it turned out to be a side effect of the swine flu.

  82. #82 Narad
    September 22, 2012

    One family does not vaccinate because vaccines are created through the use of animals.

    If it’s really hinged on blood, it would seem that they’d need some sort of system to tell when the Unclean passes into the space before the Clean. When does this version of treif go away? Blood is spilled.

  83. #83 Grant
    September 22, 2012

    Renate,

    In the TV news in NZ, or somewhere else?

    I’ve found it’s probably because a couple of reports were issued. This blog has already covered it:

    http://afludiary.blogspot.co.nz/2012/09/ecdc-report-narcolepsy-in-association.html

  84. #84 Alain
    September 22, 2012

    offtopic:

    @ Roger Kulp, could you email me with your story at alain.toussaint@securivm.ca

    you seem to keep wanting to tell your story and I’ll be receptive to it, just email me.

    Alain

  85. #85 Renate
    September 22, 2012

    Grant,

    No, it was in the Netherlands. There was a big coverage on the flu vaccine on television, but when it turned out to have nothing to do with the vaccin, it was mentioned as some aside.
    Don’t trust media-coverage if it is about medical issues. Mostly they tend to be very alarming, especially if it is about medicine.

  86. #86 Anj
    September 23, 2012

    Apologies, can’t find the commenter who was talking about blogs being like “online group therapy” – only without the trained moderator.

    Checked Age of Autism and this post made me realize just how important a trained moderator is to productive group therapy, IRL or online.

    “We are filled with more than just righteous indignation but every desire to right wrongs that have become all consuming. ”

    http://www.ageofautism.com/2012/09/old-wounds-and-righteous-indignation.html#more

    I’m filing this under “If I ever start talking like this, PLEASE get me professional help.”.

    I’ve definitely been frustrated caring for my special needs child. I’ve certainly been envious of people who don’t have to expend the time and energy I do in order to do mundane things like taking a child to the store. I don’t see how obsessing about what everyone else is doing, or not doing will help us.

    Occasionally, I post something on FB about special needs life but only after struggling with how to present it so people can relate to it. “Righteous indignation” appeals to so few, if I want support from more than a few, I need a different approach.

    …[ponders]…
    I don’t I’ve ever used righteous indignation yet. I’ve thought about it a few times, but we’ve managed to resolve situations without it.

  87. #87 Denice Walter
    September 23, 2012

    @ Anj:

    I was the person who refers to AoA and TMR as naive group therapy. And yes, I have had education/ training/ experience in counselling/ therapy as well as in experimental psych ( and a few other things). Hang on. I have quite a few thoughts on the issue: let me first do my errand.

  88. #88 Denice Walter
    September 23, 2012

    @ Anj:

    I’ll try to do this WITHOUT writing a 3000 word article.

    Basically group therapy is a place to learn new skills/ ways of problem solving/ new information and to discuss emotional conflict/ issues, led by a trained person.. hopefully, more realistic, less mal-adaptive views will be assimilated and ‘tried out’ in a safe environment. You hear about others’ experiences and get feedback on your own position. People are encouraged by the group in their exploration and nastiness is discouraged.
    I would hope.

    Parents of kids with disabilities may face isolation because their kids attend different schools/ classes, may not have as many social activities or clubs to join and there is always the possibility of real stigma. Often they feel stress because of added responsibilities ( the kids require more assistance) and worries about the future.

    Instead of talking about ASDs, I’ll refer to ANY health/ developmental/ psychological problem being the main focus of the group ( it could be hiv. cancer, overweight, shyness, SMI, substance abuse- what-have-you)- for self or a family member The approach can be either SB or not: if it IS SB, we have to use information that has been researched and applied to people: so not only is the method subject to rules ( how to conduct a group) but so is the material discussed.

    When people do this ON THEIR OWN the rules may be imaginative creations by the principals. I read AoA and TMR and find that contributors and commenters use these outlets as a group to deal with their own problems, air their frustrations, find social connections and LEARN- unfortunately- new forms of woo to “recover’ their child. The group reinforces UNrealistic beliefs ( vaccines cause autism; AJW has the truth) and encourages highly emotional responses to the imagined ‘injury’. It seems as if they are having a contest to see who is the most martyred parent and who has the most venom and hatred to spew.

    Although real therapies for the children are discussed, most times it’ll be the newest woo in town ( supplements,homeopathy, CEASE, diets, chelation, bleach et al). In addition, more realistic views may be censored or drowned out. I imagine that like web woo-meisters’ facebook and other social media, visitors are alienated from SBM, aggressive speech is rewarded and a grandiose view of one’s self as a “researcher’, “scientist” or ‘revolutionary’ is par for the course. “We know more than doctors” is a common statement at these blogs. People may use their affiliation with the group as a social outlet as we have seen their conferences become party central for a few days.

    Leaders of these groups enjoy social power, become role models and perhaps may earn money when they write a book or sell a product. Thus, the followers become leaders on a smaller scale. Teaching newbies how to Dunning-Kruger their way to fame and fortune.. at least in their fevered imaginations.

  89. #89 Narad
    September 23, 2012

    I’m filing this under “If I ever start talking like this, PLEASE get me professional help.”

    Ms. Jameson also takes the time to wage all-out war on irony meters in that piece:

    But, when our children are looked as experiments, collateral or dollar signs for someone else’s gain I believe parents are allowed to feel every range of emotion which includes searing, painful and unwavering anger.

  90. #90 Narad
    September 23, 2012

    Oh, boy, and Anne Daschel descends into frank megalomania in the comments.

  91. #91 Narad
    September 23, 2012

    ^ “Dachel,” of course. Her online-commenting version of “dine and dash” seems to have leaked into my spelling in this regard.

  92. #92 Denice Walter
    September 23, 2012

    Jameson speaks about anger, rage, fury and being “consumed by emotions”.The material I survey fans the flames and adds fuel to fires already burning.

    She hints at the unrealistic surge of grandiosity which engulfs her : she is out to warn others so that they can avoid the ‘damage’ that ‘destroyed’ these children. She, like woo-meisters and even the cherished AJW, fancies herself to be a saviour.

    People who have kids with ASDs may suffer a loss of self-esteem- falsely believing that they did something wrong ( vaccinating) or that they somehow don’t ‘measure up’ – they need ot cast aspersion outward onto their ‘tormenters’ ( the child destroyers) to feel righteous. To raise yourself from the depths takes aggressive speech and actions: they feel better by lashing out.
    It’s easier to castigate your *bete noire* instead of dealing rationally with a very difficult situation. The only experts they consult are from their own hive of stinging hornets.

    I wonder what would happen if they ever targetted their vitriol on the true source of all their woes- the guy who stirred up the entire hornet’s nest in the FIRST PLACE.
    -btw- his initials aren’t BD or DG.

  93. #93 herr doktor bimler
    September 23, 2012

    Occasionally, I post something on FB about special needs life but only after struggling with how to present it so people can relate to it.

    Has anyone seen this documentary series yet?
    http://crookedtimber.org/2012/09/19/louis-theroux-visits-families-with-autism/

  94. #94 Denice Walter
    September 23, 2012

    @ Anj:

    In conclusion, the aims of therapy are often accomplished in RL amongst friends and family who care about us and respect our opinions: we say what bothers us/ worries us / frightens us and ask for ideas to help us along our paths. We do the same in return when they call upon us. There is no need for a moderator if there is mutual affection and respect.

    I have found that if I need assistance or advice, it’s best to just say so: try to explain precisely what you need to know. I would guess that- like any caregiver- you probably would like relief from daily responsibilities, maybe good information about help for a child and above all- time to focus on yourself and/ or your significant relationship- marriage- at least for a short while- here and there.

    If your life is centred on your role as a caregiver, you will probably feel exhausted and cheated – no matter how much you love your child. YOU are part of your responsibilites as well.

    You have sympathetic ears at RI: many people here have or had similar issues; others, like me, have some experience in counselling. Also, we are much more fun that AoA/ TMR and dress better too. Seriously, we rock.

  95. #95 Anj
    September 23, 2012

    @Denice Walter,

    Thanks. I do struggle a bit, but feel that my issues are not huge even though they do affect daily life.

    Friday my son had problems noted on his school report. Our outing was going to be a multi part one, but we went home after the first stop because he couldn’t make Good Choices. It’s the rule I use and honestly, I could see he was not at his best, so the results were not unexpected. His brother had an outing that evening and he was loudly unhappy about having to stay home. And yet, he got his bath and got ready for bed while whining about it.

    Saturday, we set out again. Same rules, make Good Choices and behave well and we keep going. If not, we return home. It was a very successful outing, actually two since we did a morning run and an afternoon run.

    I get a bit tired of everything being a test. A test of my skills at predicting and managing his behavior. A test of his progress of the same. Adjust goals. Adjust expectations. Adjust rewards.

    My biggest problem is remembering to take time to celebrate successes, and not letting the inevitable failures get me down. He’s working on earning a Chuck E. Cheese outing. He needs 5 consecutive days of good behavior reports from school. He’ll get it, I’m sure of it. He’s doing much better this year. It’s just a matter of when.

  96. #96 lilady
    September 23, 2012

    @ herr doktor bimler…I just finished viewing that documentary. My heart goes out to all those parents (and siblings) of autistic kids.

    This article about an autistic man who is employed as a school janitor caught my eye. I was aghast that bullying and taunting of him by students took place. Then I was heartened by the response of the community who understood what precipitated the incident:

    http://newyork.cbslocal.com/2012/09/21/l-i-school-board-decides-fate-of-fired-autistic-janitor/

    Cripes, I despise some of these teens, who use bullying and taunts even amongst their own peers.

  97. #97 lilady
    September 23, 2012

    @ Anj: Welcome aboard. I can only reiterate what Denice Walter has stated. Many of us are parents with…and without children with special needs. Many of us are childless, but we all share our experiences and our knowledge with with each other.

    Actually, the one common thread that binds us to this site is the analysis of science topics that our host Orac serves up with heaping helpings of (respectful) insolence. I’m a relative newbie here; I came here for the science and the insolence and stay posting here for the company of like minded posters.

    Autismum, a science blogger from Wales, who often posts here, posted this…which I think is how we all feel about our groups on the internet:

    http://autismum.com/2012/08/29/you-cant-possibly-know/

    Hang out here and keep on posting…you’ll never find a more congenial group of posters…anywhere. (We also have a lot more fun on this blog, compared to some of the stodgy blogs) :-)

  98. #98 THS
    Not near any wildfires today
    September 24, 2012

    Re the last couple of comments: Is true, and I click in often on account I want to read the latest from some of the posters above on this blog – for example, several of the above.

  99. #99 Antaeus Feldspar
    September 24, 2012

    I wonder what would happen if they ever targetted their vitriol on the true source of all their woes- the guy who stirred up the entire hornet’s nest in the FIRST PLACE.
    -btw- his initials aren’t BD or DG.

    Oh, you’d like us to believe that, wouldn’t you? We all know you’re a shill for Dolce & Gabbana, Denice; you can’t hide the massive evidence that they’re behind the epidemic that’s shortly going to result in more than 100% of children being autistic!!

  100. #100 Denice Walter
    September 24, 2012

    @ Antaeus:

    You are so ENTIRELY wrong. I hate D&G; I only shill for Calvin and Mr Bailey’s project.

  101. #101 dingo199
    September 24, 2012

    Meanwhile, clever people from a great place have developed genetic tests for likelihood of acquiring autism.
    http://www.medicalobserver.com.au/news/australian-researchers-develop-first-genetic-test-for-autism

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