Fear and loathing and vaccines

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.)

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?

@Renate,

HER God apparently does.

It certainly makes me wonder about her and her God.

(Evolution is a harsh mistress.)

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?

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.

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.

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.

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.

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.

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?

“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?

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.

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.!

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.

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.

@Bridgette,

I’m so sorry you lost your brother.

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!!!

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.

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/

@Jay Chaplin,

Thanks for the detailed thoughts.

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.

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.)

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

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.

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.

Drat, wrong bracket closure! Sorry…

@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.

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.

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 – ?)

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.

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

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

https://www.respectfulinsolence.com/2008/06/14/the-nuttiness-that-is-whaleto/

@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?

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?

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.

@ 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).

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.

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

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.

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…)

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.

offtopic:

@ Roger Kulp, could you email me with your story at [email protected]

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

Alain

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.

@ 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.

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

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.

@ 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.

@ 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.

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.

@ Antaeus:

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