Meet the new boss, same as the old boss

8 Apr

I got email from Ginger Taylor today. She’d read one of my posts on the ongoing Poling/HHS scenario.

I wanted to make sure you had see this from the VICP table.

It is part of the description of what vaccine induced encephalopathy is:

(1) A significant change in mental status that is not medication related; specifically a confusional state, or a delirium, or a psychosis;
(2) A significantly decreased level of consciousness, which is independent of a seizure and cannot be attributed to the effects of medication; and
(3) A seizure associated with loss of consciousness.

(D) A “significantly decreased level of consciousness” is indicated by the presence of at least one of the following clinical signs for at least 24 hours or greater (see paragraphs (2)(I)(A) and (2)(I)(B) of this section for applicable timeframes):

(1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things).

As a matter of fact, I _had_ seen the table. Why Ginger wanted me to read it again I’m not sure. It doesn’t add anything new to the list of symptoms that both the HHS document and the Case Report document and thus we’re still no nearer a diagnosis of autism.

Anyway, after that she carried on:

That is an exact description of what most of us observed in our children when they regressed. When I went into my peds office with my son hanging limp in my arms and not responding to external stimuli, with absent eye contact, and dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines, he should have diagnosed him with encephalopathy. A medical condition, that my medical doctor was charged with diagnosing.

But pediatricians are not taught to look for vaccine injury. Only autism. Because no one is responsible for autism. So instead he sent him to a speech therapist and a psychologist that diagnosed him under a DSM IV code of autism. He passed the buck because if he had done his diagnostic job correctly, he would have indited himself and the vaccine program.

And my doctor was a good doctor. He was not a shlub.

He would’ve indicted the vaccine program for what? Indicating a known vaccine injury was present? Huh?

This to me is the crux of the title of my post – meet the old boss, same as the old boss. People such as Ginger are not interested in _autism_ . They are not interested in being advocates for _autism_ . What they want is either a recognition that their docs screwed up and diagnosed their kids with the wrong thing (this is fine by me. The sooner these people are off the autism communities back the better) or for autism itself to be redefined to meet their own children’s symptoms. This is not fine with me.

This is nothing new. Way back in 2001, Bernard et al published Autism: A Novel Form of Mercury Poisoning which attempted the same ‘trick’ as is being attempted here – redefine autism to meet your own beliefs rather than see if what you believe fits the already established facts. As we have all been witness to, time has not been kind to the thiomersal hypotheses. Neither has it been kind to the MMR hypotheses.

Anyway, Ginger carried on:

Things are changing VERY quickly Kevin. The atmosphere here is much different than from what i understand is happening in the UK. Major networks are not ready to report on it yet, but they are listening to us now. Calling and asking questions even. Main stream docs were talking to me about integrating DAN methods into their practices before the AAP’s announcement last week. All of the sudden parents are getting their phone calls returned very quickly from sources that have blown them off for a long time. And I can’t keep up with my email.

I thought this would be a decade or more of fighting all this, but it looks to be more like the cascade of events when the Soviet Union fell. It is gaining speed. The Polings were the first major crack in the dam and now huge chunks are coming out faster and faster.

Kirby was right, the debate is over.

I had a quick grin at the sheer arrogance of comparing the autism/vaccine hypotheses to the collapse of communism in the old Soviet block but really, this again is nothing new. If I had a pound for every time someone had posted on here that ‘this is it, its all over’ I’d be richer by a fair few pounds. Of course, they always come to nothing.

The devil is in the details. And in the science. Mito connections to autism are nothing new. Attempts to ‘talk up’ and muddy the wide picture whilst failing to look at the details are nothing new. The media talking to people is hardly anything new (I had an interview myself recently and have had several in the past). Attempting to twist autism away from what is already known about it into something new to make it fit into yet another set of beliefs is not new.

I’ll say it again as I have before. Its a very exciting time for the media and bloggers as we have lots of cool stuff to talk about. However, none of that stuff is new science. And when it comes to vaccines causing autism that’s what is needed. Science.

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22 Responses to “Meet the new boss, same as the old boss”

  1. Ivar T April 8, 2008 at 13:40 #

    According to some norwegian parents, who are often very indoctrined into the Leaky Gut theory, their children gets high on milk and bread.

    Yes I have told them about that recent study, and ofcourse it didn’t affect their opinion.

  2. alyric April 8, 2008 at 14:57 #

    I was tempted to leave a comment on Ginger’s latest – the apocalyptic tone was getting to me – but I resisted. The ‘debate is over’, the ‘vaccine court has conceded’ and much more like it. Do you think it might be a case trying to talk this up so that it all magically becomes real, a kind of bison effect – truth trampled under the hooves of hyped inconsequential details. Seems like a marketed delusion to me and aimed squarely at Ginger and Co in the hopes that the parents don’t pull out of the omnibus and the litigation dollar flow to lawyers and experts doesn’t dry up prematurely.

  3. Tera April 8, 2008 at 15:04 #

    Ginger Taylor said:

    When I went into my peds office with my son hanging limp in my arms and not responding to external stimuli, with absent eye contact, and dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines, he should have diagnosed him with encephalopathy.

    He couldn’t have: “encephalopathy” isn’t a diagnosis. It’s just a fancy word for “brain damage” that has the added benefit of sounding Really Scary.

    This reminds me of what the doctors tried to do with Ashley X. They said her diagnosis was “static encephalopathy”–so when people with severe cerebral palsy spoke out about it, people said, “But Ashley’s disability is very different from yours! She has static encephalopathy!” Well, it turns out that “static encephalopathy” is another name for (you guessed it) cerebral palsy.

  4. Joseph April 8, 2008 at 16:12 #

    When I went into my peds office with my son hanging limp in my arms and not responding to external stimuli, with absent eye contact, and dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines, he should have diagnosed him with encephalopathy. A medical condition, that my medical doctor was charged with diagnosing.

    If Ginger’s description is accurate, I’d have to agree with her view that the diagnosis was mistaken. That doesn’t sound like autism. Whether it was caused by vaccines is a different matter, since vaccine injury is so rare that coincidence is more likely to explain any perceived correlation.

    But is this something she’s saying in retrospect or is this something she said from the start? Also, I recall her writing something about her husband being just like her son as a child, but I might be mistaken about that.

  5. brstpathdoc April 8, 2008 at 16:21 #

    Things are changing VERY quickly Kevin. The atmosphere here is much different than from what i understand is happening in the UK.

    I’m not exactly sure what’s changing, unless you count ratcheted up hysteria and silliness. I can promise you that most “mainstream docs” (read: evidence based) I know don’t incorporate DAN methods, nor advocate such. Yes, for full disclosure I am a physician (hopefully not a shlub), but a pathologist, so I’m not exactly a slave to “Big Pharma” (I do take Nexium for reflux…does that count?). I just try to do what’s in my daughter’s best interest. Quackery isn’t.

  6. Amanda April 8, 2008 at 16:31 #

    Additionally, I know the kinds of states that they’re intending to refer to, and autism is not one of them.

    I experienced a loss of skills consistent with common descriptions of autism, but without any states of the sort that they are intending to describe there.

    I’m familiar with the things they are intending to describe, from experience with medical conditions that do result in them. Those medical conditions, and the results, are not autism.

    I do not become appreciably more or less autistic-looking when delirious, for instance. The last time that happened was fairly recent. I did apparently repeatedly throw off my covers and pull them over me again, held onto the bedrails and anything else hard and needed to be pried off of them (okay, grabbing hard objects is something I’ve always done when uncomfortable, so it’s no different than usual except the intensity of the discomfort made me do it even harder), couldn’t stop shaking, alternated crying with hysterical laughter, responded to things that weren’t there, moved all over the bed without realizing that at times I was close to rolling off, and yanked on my catheter (something I’d have been too terrified to do any other time I had it in).

    None of that resembles autism (except for the bedrail part, which just shows a standard autistic reaction to discomfort rather than a new trait), and none of that resembles the way I looked when I was losing abilities in early childhood.

    Similarly, the lack of eye contact that they are talking about is not the same reason for lack of eye contact that happens in autistic people. These are things where the words could be read (at a real stretch) as meaning the same thing, but the meaning is very different in autism than in an illness or toxic reaction to something. I experienced “decreased or absent response to environment” recently (including no response to painful stimuli at some points and slight response to painful stimuli at others), and it was a result of illness making me too weak to respond. It did not look anything like autism (and autistic and non-autistic people experiencing it would’ve looked identical because it was just complete limpness and there’s only so many ways to be limp).

  7. 666sigma April 8, 2008 at 17:22 #

    I have been reading several of the recent articles/posts with some interest.

    There is no doubt that Kirby is beating the drum. If nothing else, the anti-anti-vaccine crowd should take some comfort that his true view on the subject has been made public – not that there was ever any doubt. He has found what he has always been looking for – a link. In my opinion that link is encephalopathy (and not mitochondrial disorder).

    More importantly, as Kev pointed out previously, the CDC/AAP in the US is losing control over the debate, in part, because the media will sensationalize any (negative) story for ratings. However, the arrogance of the CDC/IOM/AAP in ignoring the cries of tens of thousands of Mothers cannot be dismissed. The President Elect of AAP showed his ignorance/arrogance on Larry King, as well as his ingorance in understanding how some parents might react to his comments.

    It is time to do a vaccinated versus unvaccinated study to determine if there is any correlation whatsoever with vaccines, instead of trying to isolate a specific vaccine or ingredient. To be quite honest, looking at narrow causes was never smart. That’s the equivalent of trying to find which:

    1. brand of cigarettes, or

    2. ingredient in cigarettes

    caused lung cancer!!!

    “Nope, we did not find any connection between lung cancer and smoking Winston’s. Therefore, Winston’s do not cause lung cancer.”

    No true scientist would ever do that kind of study. That’s the type of study done by the powerful elite to confuse the uneducated masses. A true scientist would start with the general and hone in on the specific (if-and-when necessary).

    I think that science has proven that there is a STRONG genetic component to autism. However, I do not believe that autism is 5 PDD’s or even 25. I believe that we have lumped multiple disabilities, disorders and personality types into one category simply because they share some similar traits – no different than cancer. The cause, treatment and long term prognosis are entirely different. It’s time to look at the real science, which shows that there is 100+ genes that contribute to ASD.

    DISCLAIMER: One of my sons, who has been diagnosed both on and (more recently) off the spectrum, received 4 shots with 8 vaccines on the same day at 15 months of age that overlap EXACTLY with the 5 vaccines (save one) given to the Poling girl at 19 months. We literally shit a brick when we read this. I think most parents in our situation would. With 20/20 hindsight, I would spread the vaccinations out. No question.

  8. Joseph April 8, 2008 at 17:29 #

    Well, I apologize in advance to Ginger if this embarrasses her, but I was curious and had to go back and see what it is that I remembered reading, and found some stuff that may require an explanation.

    She does have in fact have a post titled “An Introduction to Chandler: Birth to Diagnosis” where she details her son’s story and mentions both vaccines and her husband’s similarity to her son.

    After Chandler’s diagnosis I went back and watched home videos to find out when things started changing for him. We had a gap in our video’s between my older son’s birthday in September and Halloween. It was clear that he had changed sometime during that time. After watching the videos I checked his shot record and found that Chandler had been vaccinated just before the gap in the video, five weeks before Halloween.

    It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.

    But I didn’t recall reading the part about the shots before, and on a hunch went to check archive.org. If you look at the 11/2006 archive, the (quite important) paragraph about the shots is not there. I’m not sure when it was introduced. I don’t feel like researching it that far (but I am getting screenshots of the paragraph transition in both posts).

    To be clear, I’m not necessarily accusing Ginger of deliberately deceiving. But this in-retrospect change-of-mind of some parents of autistic children is a documented phenomenon. For example, Lingam et al. (2003) surveyed parents about regression and found that, post-Wakefield, parents changed their recollection about the timing of regression relative to MMR vaccination.

  9. HCN April 8, 2008 at 17:50 #

    Definition of “static encephalopathy”:

    Neurology speak for “we know something is wrong… but we really don’t know what it is, but it is not changing”.

    This was how it was explained to me by the office of my kid’s neurologist when I read the first report.

  10. grenouille April 8, 2008 at 20:22 #

    HCN,

    My child (who is doing great btw) also has an official diagnosis of static encephalopathy. He has mild to moderate hypotonia and the usual gross motor delays that go along with it.

    I was told the same thing you were by both a neurologist and a dev. ped.

  11. Ms. Clark April 9, 2008 at 01:00 #

    This is shocking. Ginger Taylor’s words:

    “It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.”

    I felt kind of sickened by it.

    I guess the only way to resolve this is to say that Scott also has vaccine induced encephalopathy? Or rather is it that Ginger, changes explanations for her son’s condition and her husband’s condition like she changes her socks?

  12. Leila April 9, 2008 at 04:21 #

    Oh my God, Joseph, great catch. Back in 2005 she didn’t even mention vaccines or the boy being sick and limp.

    Talk about brainwashing.

  13. jypsy April 9, 2008 at 22:13 #

    That paragraph isn’t Ginger’s only added vaccine mention in that post.

  14. donewithbiomed April 10, 2008 at 00:05 #

    Oh my, Ging, encephalopathy is so ten years ago. It was used when in the very beginning of biomed to get insurance to cover certain treatments. The health care provider who years ago gave that diagnosis to my family member, I now would not recommend anyone seeing.

  15. Schwartz April 10, 2008 at 02:18 #

    It’s interesting how everyone interprets a change in opinion. The methodology of science itself relies on the fact that as new information comes to light, the assumptions and hindsight analysis will change.

    This is especially true in any profession which deals with longer term analysis. During a crisis, it is very difficult to evaluate the real causes of problems for a variety of reasons. That is why we keep good records, and record personal impressions as they occur. As more and more information becomes known, records can be referenced, and new conclusions drawn.

    Why is this such a shock?

  16. Ross April 10, 2008 at 04:20 #

    So Ginger just happened to forget about mentioning all of her son’s symptoms of “encephalopathy” in writing the original post? Ginger reported extensive observations about her son’s behavior in social situations, response to sensory input, and other signs of autism. These behaviors obviously were very stressful to her, yet she still managed to include them in the original post. She didn’t mention anything remotely related to her later story. I guess those symptoms really made a big impression. That’s not changing the analysis. That’s changing her story.

    I do historical research, and most historians give more weight to first-hand accounts given closer to the time of the actual event. Soldiers will write that it was a sunny day on the day of a particular battle in their diaries, and then forty years later say that it was raining terribly the entire time when they’re telling stories around the campfire. Psychology has continually proven that memory is highly suggestible. It makes no sense that reading pseudo-scientific reports about vaccinations would make Ginger remember symptoms she previously didn’t mention once, at least not with any accuracy. Schwartz, will you go to any lengths to spin information to fit the vaccine causation hypothesis?

    New conclusions about the “cause” of observations are not necessarily more accurate in the realm of personal anecdote. At the time while this was happening, Ginger noticed the similarities between her husband and her son. There are suggestions from both her husband and mother-in-law that this was indeed the case. The story says she didn’t even necessarily conceive of her son’s behavior as a definite “crisis” at first because of these similarities. Did all of that just go away when she latched onto the vaccine hypothesis?

    Really, the fact that someone would actually try to rationalize this kind of a change is unbelievable. I can’t help but wonder how her husband feels about all this.

  17. Schwartz April 10, 2008 at 06:51 #

    Ross,

    “Schwartz, will you go to any lengths to spin information to fit the vaccine causation hypothesis?”

    I’m not sure how you got that impression from my post? Changing the details or altering recalled items of a particular experience is one thing. Changing an opinion on causation when looking back on an incident with the benefit of more information is a completely different thing.

    I am quite aware of the limitations of memory, especially over longer periods of time. It is changed reasoning I was referring to.

  18. Margaret Romao Toigo April 10, 2008 at 15:41 #

    Talk about brainwashing.

    It happens.

    When my son was officially diagnosed, I decided to work on my Google PhD. In the course of my studies, I ran across numerous personal stories of parents who reported that their children were born “normal,” and hitting all of their milestones, until they got their vaccines and “regressed into autism.”

    After reading many of these anecdotes, like someone suffering from hypochondria reading about diseases and their symptoms, I became convinced that my son was born “normal,” and was later made autistic by vaccines, even though my husband and I had been noticing that something was “off” since the boy was about 3 months old.

    This temporary delusion of mine lead me to look into “alternative” treatments, which became a brief temptation that might not have been so brief if the decision — and the money — was mine and mine alone.

    Then I was foolish enough to believe that I could actually pitch these ideas before my skeptical family members and that they would be as easily convinced as I was. They weren’t.

    I made a fool of myself with my arrogance from ignorance and my emotional rantings and ravings. But when I started getting into the conspiracy theories and it was pointed out to me that I was getting into conspiracy theories, I had an epiphany and realized just how far around the bend I had gone while attending Google U.

    I am still a little embarrassed to admit all of this, but if it makes just one person realize the mental processes under which we can fool ourselves into re-writing our own life histories, and those of our children, it will be well worth that minor discomfort.

  19. Joseph April 10, 2008 at 16:03 #

    Because it doesn’t add up, Swartz. It could be that she changed her mind in hindsight. But quietly altering old posts like that, frankly, looks like planting evidence rather than a change of mind.

    She initially talked about colics and hard times, but this seems like a notable thing to leave out:

    “When I went into my peds office with my son hanging limp in my arms and not responding to external stimuli, with absent eye contact, and dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines”

    As Jypsy notes, the post currently includes another mention about vaccines. In each case, they have been merged into the text to, in my opinion, give the appearance that the text was originally that way.

    “At three weeks old, just three days after being vaccinated, he developed colic, which I have heard is common with ASD children. ”

    vs.

    “At three weeks he developed colic, which I have heard is common with ASD children.”

    This part is also interesting as it relates to causation:

    “He was not worried, and reminded me that his mom kept saying that, “Scott had done that when he was a baby too”, about almost all of Chandler’s quirks. And since Scott was fine (just very, very shy growing up) Chandler would be too.”

    To Ginger’s credit, she did not delete these parts. That would’ve been really bad.

    I think you’re trying to defend the indefensible here, Swartz.

    If I were a parent with a potentially legitimate claim of vaccine injury, I’d be furious at Ginger right now.

  20. Regan April 10, 2008 at 21:41 #

    Margaret,
    Don’t be embarrassed. I find your description to be both interesting and cautionary.

    It’s hearsay, but I have an acquaintance who as time has gone on has become more and more emmeshed in vaccine conspiracy, and coincidentally her emails about her child’s diagnostic symptoms have become more and more extreme, as have her views. It is illuminating to compare those descriptions from 4 years ago to now.

  21. Schwartz April 11, 2008 at 06:25 #

    Joseph,

    Perhaps you are right here, but we never really know one’s intentions or frame of mind. I agree the change you pointed out certainly looks suspicious, but by far not the most egrigious thing I’ve seen on these websites.

  22. Joseph April 11, 2008 at 15:39 #

    I’d like to see an explanation from Ginger in order to form a more substantiated opinion of what happened, but one thing’s for sure, from now own it will be very difficult to take Ginger at her word about anything, especially causation and the purported ongoing “recovery” of her son.

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