"I Want Normal Kids"

Your written conclusion – While stories about murder may terrify us, they do not reflect who we are as individuals or as a community…

Nicely said.

After reading the above article, read this one. It warms the heart It’s a mother talking about her daughter lying to fit in and she’s conflicted because she wants her to learn to be social yet she thinks that the honesty and innocence that comes with autism is it’s own kind of gift. Made me cry…happy tears though lol!

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.bellaonline.com%2Farticles%2Fart67389.asp&h=5a7e4

The good news is that it happened in Texas and with any luck, unlike Andrea Yates who drowned her five babies, this bitch will go to her death courtesy of the Texas Justice system.

That’s a very moving sentence. Kim Stagliano is indeed a gifted and compassionate writer. Thank you Lisa for drawing our attention to this moving piece about the struggles Kim Stagliano goes through .

Yes, ANB, that’s the part of Kim’s article I was referring to, and not her long and heartfelt reflection on the emotional stress of raising three daughters with special needs.

Once again, you are intentionally misunderstanding what I’m writing about, presumably in an attempt to start an argument about something… maybe capital punishment?!

Lisa

Once again you are presuming wrong.

ANB, I appreciate your perspectives on topics, particularly when they are on point and not directed against individuals.

Perhaps you have something specific to say about the topic of the blog post which, as is often the case, focuses not on controversy but on support and hope. Perhaps, in fact, you would like to share specific ideas for where and how parents can find support or respite? That, as I think you know, is the focus here.

Lisa

Two dead, mother next to her twelve year old autistic son. These are the things that are going to be heard more and more often as the numbers of affected families grow. Not everyone can handle the tragedy of autism, and some have more, the comorbidity of autism placed on their neurologically weakened children that are already suffering fragile x,downs, cerebral palsy. No one can say what their own snapping point could be, let alone guess at another’s. We talk so nicely about therapies, special movies, diets, not so much about the big bruise from being head butted while watching tv. We compare kids who are mainstreamed to a non verbal child in diapers and expect everyone to gain something from our exchanges. No I don’t want to see this mother executed, I don’t know from what the media allows to be thrown at us, how sick she may be. I would however, love to see the pharm ceo’s that “KNOW” and continue to damage our kids executed, and others involved prosecuted, they’ve inflicted this on our kids , it would be a proper “eye for an eye”.
In the meantime we have to face that autism reduces longevity, and stop thinking of it as better than whooping cough and measles, or varicella and polio, none of these diseases caused so much morbidity , and if we knew the actual numbers we may find it produces more mortality, not the instant type seen in infectious disease, but over the shortened lifespan. How many 65 yr old autistic men do we know? I don’t know why the actuaries won’t release this information, yet they won’t cover most autistic children, they do have stats.

@barbaraj,

When you write “I would however, love to see the pharm ceo’s that “KNOW” and continue to damage our kids executed, and others involved prosecuted, they’ve inflicted this on our kids , it would be a proper ‘eye for an eye’,” you close off the possibility of rational discourse. Let’s say you’re correct in the assumption that vaccines cause autism (no reputable, verified research says so, but never mind that for now), you honestly believe it’s been perpetrated deliberately and that the CEOS should be killed?

There’s a reason people back away from folks with the kind of inflammatory rhetoric you’ve provided in your post.

The issues raised in this article are so important — dealing with feelings (guilt, anger, anxiety, fatigue, etc.) finding help and suport, finding balance, carving out some time for our own needs and health… There are no easy answers, but balance is important for sure, and setting priorities, figuring out what is most important and what can fall by the wayside, not stressing out too much about others’ expectations of us.

Here is a good article about the importance of moms taking care of themselves. (Of course dads need to take care of themselves too!)
http://www.sokhop.com/moms-need-to-take-care-of-themselves-too-207#more-207What

It’s important for someone at the end of their rope to reach out. There is a lot of support available these days in various groups, since autism is so common now. Unfortunately this common-ness also means more competition for services, yet some school districts and government agencies provide resources for support, counseling. And some employers have Employee Assistance programs. There are resources, though sometimes hard to find just the right match.

For me, exercise is what keeps me sane. It’s wonderful in so many ways.

I’m not a bit sorry. We have allowed poison for profit to become the way we do business in this country. No one is answerable to anyone but the stock holder, children are collateral damage in a grand scheme of power and money and no one should be held accountable? That way of thinking is how we got here.
If I knew I had a poison apple and gave it to my child I would be a murderer. If these corporations knowingly gave my child the poison apple what would they be? We’ve seen the perp walk in high finance, I’m hoping to see the same with pharms.

ANB, I appreciate your perspectives on topics, particularly when they are on point and not directed against individuals.

How was my comment directed at individuals? You pointed to a clunky, adjective-laden, self serving, hypocritical post at AoA as a “moving” example of how parents struggle with their children, and we’re supposed to ignore the lead paragraph? Are we supposed to forget that your moving, thoughtful writer once sprinkled an industrial waste treatment chemical on her kids’ Corn Flakes in a misguided effort to treat their autism? And then later wrote that their is no excuse for putting children in danger? Or is that too off topic?

The focus of your post is easily inferred from your headline: “I want normal kids”. What we really want is the perfect child we imagined, the embodiment of all of our hopes and dreams. When that didn’t work out, we grieve the death of that perfect child. It’s a painful, messy process, despite Kubler Ross’s best effort to order the stages.

Now by your rules we should all ignore my first paragraph, and only comment on the second.

Thanks for another thought provoking blog. I wanted you to know that I mentioned you in my blog posting for next week and thought you might want to take a look. It will be posted by Wednesday, August 4. I appreciate your great work! Dr.K.

I have never thought to myself ‘gee I want normal kids’. I am quite thrilled with what I got. My youngest is autistic with LD’s across teh board ,ADHD and a few other challenges, my daughter is in advanced classes and is still bored and my oldest cant figure out how to be a sheeple… They are great kids! I have never ever encouraged my children to be normal.
As to Kim Stagliano and Age of Autism, I am unsure how hatred and fear equals ‘moving’.

ANB, Lisa’s comments to you are exactly right. You just love to jump on the opportunity to criticize anyone from AoA. And Sirenity, Kim’s article did not express hatred and fear.

You’re getting warmer, Twyla. It’s not just AoA that I keep an eye on – it’s vaccine rejectionism in general, and sloppy commentary that overlooks the danger that movement poses. And Sirenity is spot on – there’s nothing “moving” about a blog post that calls for the execution of a person who has yet to stand trial. As for executing drug company execs based on a fever dream, well, maybe Lisa can explain that one.

Oh, and you forgot to mention that you are also against treating vaccine injuries.

But that’s not what Lisa’s article is about. This is an article about dealing with the stresses of parenting, and dealing with our child not being “normal”.

The article in A of A that I was referring to is, essentially, about Kim’s children – all of whom have special needs – and about the difficulty she has had in managing her own emotions around the challenges she’s faced.

My point was that if someone like Kim, who is tightly tied to a large community and is very well informed about available services and supports, has a tough time… it’s very easy to understand how others can have a much tougher time.

This particular post was not about the question of whether or how the Texas mother should or should not be punished for her actions. Obviously that’s an important topic, but I don’t know enough about the details of the crime or about Texas law to comment.

Another point: I carefully defined “normal” so as to make it clear what I am talking about. I am NOT talking about “children who act just like their typical peers” but rather, to quote myself, children “who can talk, laugh, play, learn, run, make friends, excel, discover and grow.” Perhaps this is not what you want for your kids, but if such is the case I am surprised.

Lisa

You were “moved” by a post at a fringe anti-vaccine website that calls for the execution of a woman who has yet to stand trial, because you thought that once you get to the second paragraph, the writer did a “moving” job describing how hard it is to have children. You can do better. That’s my point.

And Twyla, you forgot to mention you have jettisoned science and reasoning in favor of guerrilla marketing and fuzzy group think.

And you keep talking about “science” without actually citing any science. You simply use perjorative terms such as “fringe anti-vaccine website” and “guerrilla marketing and fuzzy group think”. No scientific information or reasoning there — just slurs.

And, again, the point of this article is that sometimes parents of kids with autism are dealing with extremely stressful situations — how do we deal with this? Whether it is having a child with extreme behaviors, medical issues, sleeplessness (very difficult!), or accepting that our child is not who we expected or who our peers/family/neighbors expected (easy to say that this shouldn’t be so difficult, but it may take working through our own dumb emotions), or helping a relatively high functioning child overcome anxiety, social issues, etc., or worrying about our child’s future if s/he cannot fend for him/herself after we are gone, or figuring out which treatments/therapies are appropriate and how to pay for them or get them funded and come up with the time needed — all of this can be very challenging.

It is terribly sad to read of parents killing themselves and/or their children. As Lisa said, this does not reflect who parents generally are. And this does sometimes happen with parents of children who are not autistic. One of the relevant questions is, how do we deal with our stress so that we don’t get to such a point of hopelessness?

To be fair, calling a piece ‘moving’ doesn’t always imply agreement.

I’m sure a piece on child abuse from the perspective of the abuser would be ‘moving’, but not in the same way as a piece from one of their victims.

However, I agree with ANB that the whole content of a piece – not just the bits we like – should be used when describing the contents of a piece.

Lisas’ mistake could have been avoided by accurately describing Kims’ piece, and not just the bits she liked.

Personally, I find the story of her slamming her daughter into a garage rather disturbing, not moving. I can only assume it was a one off, and not a regular strategy.

The comments on the AoA piece are rather informative and interesting. It’s amazing how many people are willing to blame it on vaccines. Even a minority of comments that have been allowed to remain have a uncomfortable racial and classist undertone.

I’m sure you’ll agree that this should be the end of this line of discussion, and that we should get back to the main discussion.

I really do need to comment on Barbara J’s statement about pharma “knowing” that they are poisoning our children, etc., and that they deserve execution.

Clearly, BarbaraJ, you honestly believe that our pharmaceutical industry and medical community is made up largely of super-villains whose intent is to inject their own and others’ children with poisons in order to build a vast pile of cash.

As with all conspiracy theories, this notion is impossible to DISprove. It is, however, very, very, very unlikely.

Until and unless individual members of the pharma community are legally brought to trial for attempted or actual crimes and found guilty, we have no good reason to ask for anything like execution!

Re Kim’s piece, I’ve already told you why I found it moving – if surprising. I’ve also told you which sections I specficially found moving and why.

Kim, like Alison Singer, has put herself out there on the line by sharing some of her most negative feelings.

Neither Kim nor Alison took any action that would injure their children. Instead, both women chose – in very different ways – to become active in advocating and working for their children’s futures.

Of course, Kim and Alison disagree vehemently with one another about autism’s causes and appropriate treatments. But in this one way I believe they have something in common – and I admire their willingness to share the “dark side” so that others can see that it’s possible to plumb the depths and come out the other side.

One reason I picked this out is that I don’t have the perspective these women have. Yes, I have a child on the spectrum, but no – I haven’t lived with frightening symptoms that make me wonder if my child will be able to continue to live with me. In addition, I have been fortunate to have avoided serious depression or anxiety relative to my child’s diagnosis.

In the past, people have criticized me for not writing enough about “low functioning” autism. These women have and do.

Lisa

I do believe some “do know”. I compare it to McNeil, they “knew” they loosed a defective product on the market, instead of calling for a recall “immediately”, they set out to do a small recall of their own, buying up tylenol and motrim from retail sites, and bringing it back into the lab to determine how much contained bacteria, “unknown to us metal fragments”, fungicides (often fungicides are mercury based). By “taking care of business” in a mob sort of way, they allowed these products to be marketed for two years after they KNEW. Yes, they are now turned over to the FDA’s criminal investigation division. The CEO KNEW..however..the workers..doctors..scientists..were not aware..they were just following orders. …benadryl..tylenol…motrin…are likely in all of our cabinets..and sitting there to poison our kids because someone didn’t want the stock values to go down by sounding an alert!I choose not to believe in conspiracies, I just look at what’s going on, and sadly it’s going on. When a product kills or maims, and a corporation has that information , and they don’t correct the problem because of coporate interests , yes, I believe they should be prosecuted as individuals , this should not fall under some weak product liability law slapping a fine or two.
In the case of gardasil, 17 young women lost their lives in the original trials, and they were removed as “not related”. Many others were injured, this is how we allow the pharms to do business. Were they young women? or were they 15 yr old girls? Their deaths were just coincidental ..yep!
I do not appreciate being considered anti vaccine, if my child were bitten by a wild animal. knowing the downside of rabies vaccine, I would still go for it. I believe vaccines are amazing tools in keeping us healthy, but far too many have no purpose other than shifting around age of disease, and they are causing a lot of unnecessary damage.

In the case of gardasil, 17 young women lost their lives in the original trials, and they were removed as “not related”.

This is simply not true. The fact that you are spreading such falsehoods clearly identifies you as anti-vaccine.

I don’t know enough about gardasil to comment on it, but I will say that the term “anti-vaccine” is problematic.

If I understand correctly, the argument isn’t about whether or not vaccines, as a medical concept, are a good idea. I believe we are all in agreement that protecting people against disease is a good idea.

It also seems clear that we are all in favor of having the safest vaccines and pharmaceuticals possible. We also agree that vaccines, like just about everything else, are not completely harmless to everyone. Some people have bad reactions.

That said, however, we ARE in disagreement about certain other issues. For example, there’s plenty of controversy over HOW safe vaccines are, what the side effects might really be, how likely side effects are, and to what degree those side effects are acceptable given the obviously huge advantage of having a population that’s resistant to major and potentially lethal diseases.

Lisa

ANB the fact that you continue to dispute the research of others without providing one decent source to hold up your opinion is getting tiresome. It’s not only that you dispute evidence and science, you make it personal by calling others liars. I would like you to address your concerns with my findings with something a little more substantial then..saying I’m spreading falsehoods..dig up some science that doesn’t have a pharm letterhead and share.

and..btw..I don’t suggest scapegoats..often when I read the dealings in China I suspect the corporations that marketed the product should be held more responsible..but someone is always made to pay when money trumps health.
http://www.timesonline.co.uk/tol/news/world/asia/article6929374.ece

I don’t know enough about Gardasil to comment on it, but I will say that the term “anti-vaccine” is problematic.

Stories about Gardasil killing teenage girls are based largely on VAERS reports. The last time I checked, there were approximately 20 confirmed deaths reported “after” a Gardasil shot. Some of those deaths occurred as long as six months after the vaccine was administered. The causes of death varied: cardiac arrest, stroke, diabetes, respiratory disease, and even a drug overdose. The rate of death for each cause is statistically similar to a population of teenage girls before 2006. In other words, there is no reason to believe that Gardasil kills teenage girls. It would be extraordinary, even miraculous, if nobody ever died within six months of a Gardasil shot, given that some 24 million doses have been administered since the summer of 2006.

What else to call a person who ignores evidence, and spreads demonstrable falsehoods in order to scare people about vaccines? Certainly not pro-vaccine.

You do have a way of putting on the twist to your benefit. Why don’t we throw out VAERS cases altogether, as “silly” as they are. Gardasil is dangerous, I was not talking about the Vaers cases, I was speaking to the pharmaceuticals ignoring the deaths of seventeen girls during the trials. The numbers you applied to make your point were clearly not a part of this. Surely we all know vaccines are never guilty, surely it was just a coincidence that most died within hours and days, yet you chose to focus on one that died six months later. You have no difficulty spreading falsehoods and negating evidence. It really makes no difference to me what you think about the vaccines or the vaccine programs, they will eventually be exposed for what they are. I have to deal with the damage, and really would have liked to have seen it stop, but with those protecting it like the “cash cow” it is, it will take a very long time. Is it wayward thinking, is it money, does some alliance pay your bills, is it sponsorship, ego?? I can’t believe it’s a sincere belief for one to find these vaccines harmless. I can understand being on the fence, waiting for more information , that is the less dangerous route to take and not really wrong..but to crusade for something that is so hidden in secrecy and drowned in money and deny the possibility that immense harm is being done..is a hmmm.

I’ve seen no evidence of “immense harm” from vaccines, although I’m not sure what you mean. Do you think that the risk of vaccines outweighs the benefits? Or are you confusing vaccine court decisions with findings of scientific fact? There’s no credible evidence that vaccines cause autism, so I’m not sure what “immense harm” you are seeing.

What is so dangerous about Gardasil? The vaccine uses a single protein. There’s no live virus, whole cells, anti-freeze, ether, fresh-ground pig fetus of whatever scary made up ingredient AoA is pushing this week. Just because you call Gardasil “dangerous” doesn’t make it so.

Where did you read about the 17 fatalities? NVIC? Whale.to? Mercola?

re: reported deaths following HPV vaccines:
http://www.judicialwatch.org/files/documents/2009/vaersdeathsALL_20090616.pdf
http://www.judicialwatch.org/gardasil

CDC report:
http://www.cdc.gov/vaccinesafety/Vaccines/HPV/jama.html The CDC said:
• Of the 12,424 reports of adverse events, 772 (6% of all reports) described serious adverse events, including 32 reports of deaths.
• The 32 death reports were reviewed and there as no common pattern to the deaths that would suggest they were caused by the vaccine. In cases where there was an autopsy, death certificate, or medical records, the cause of death could be explained by factors other than the vaccine. Some causes of death determined to date include diabetes, viral illness, illicit drug use, and heart failure.
• There were two reports of unusual neurological illness (per autopsy, probable variants of Amytrophic Lateral Sclerosis (ALS) often referred to as “Lou Gehrig’s Disease”) that resulted in the death of two young females. There is no current evidence suggesting that the HPV vaccine caused these illnesses, but researchers from several highly regarded academic centers are studying the cases.
• There was increased reporting of syncope and pulmonary emboli (blood clots of the lungs) compared with what has been found for other vaccines given to females of the same age. Of the people who had blood clots 90% had a known risk factor for blood clots, such as taking oral contraceptives (birth control pills). VAERS reports cannot prove the vaccine caused the adverse event in women with these risk factors. However, this finding needs further investigation.

Merck’s statement regarding deaths during trials:
http://www.merck.com/product/usa/pi_circulars/g/gardasil/gardasil_pi.pdf
Deaths in the Entire Study Population
“Across the clinical studies, 37 deaths (GARDASIL N = 18 or 0.1%; placebo N = 19 or 0.1%) were reported in 29,323 (GARDASIL N = 15,706; AAHS control N = 13,023, saline placebo N = 594) individuals (9- through 45-year-old girls and women; and 9- through 26-year-old boys and men). The events reported were consistent with events expected in healthy adolescent and adult populations. The most common cause of death was motor vehicle accident (5 individuals who received GARDASIL and 4 individuals who received AAHS control), followed by drug overdose/suicide (2 individuals who received GARDASIL and 6 individuals who received AAHS control), gun shot wound (1 individual who received GARDASIL and 3 individuals who received AAHS control), and pulmonary embolus/deep vein thrombosis (1 individual who received GARDASIL and 1 individual who received AAHS control). In addition, there were 2 cases of sepsis, 1 case of pancreatic cancer, 1 case of arrhythmia, 1 case of pulmonary tuberculosis, 1 case of hyperthyroidism, 1 case of post-operative pulmonary embolism and acute renal failure, 1 case of traumatic brain injury/cardiac arrest, and 1 case of systemic lupus erythematosus in the group that received GARDASIL; 1 case of asphyxia, 1 case of acute lymphocytic leukemia, 1 case of chemical poisoning, and 1 case of myocardial ischemia in the AAHS control group; and 1 case of medulloblastoma in the saline placebo group.”

Interesting that they don’t separate out the car accidents from the deaths due to medical reasons.

How do the risks of the vaccine compare with the risks of cervical cancer? Here what researcher Diane Harper has to say:
http://www.cbsnews.com/stories/2009/08/19/cbsnews_investigates/main5253431.shtml
“(CBS) Amid questions about the safety of the HPV vaccine Gardasil one of the lead researchers for the Merck drug is speaking out about its risks, benefits and aggressive marketing…”

I did a search of VAERS data:
Found 63 events where Vaccine is HPV or HPV2 or HPV4 and Symptom is Death and Patient Died
Table Report
Age Count Percent
9-12 Years 5 7.94%
12-17 Years 19 30.16%
17-44 Years 24 38.1%
Unknown 15 23.81%
TOTAL 63 100%
http://www.medalerts.org/vaersdb/findfield.php

At any rate, there were 18 reports of deaths during the Gardasil trials, per Merck’s own write-up, and 63 reports of death in the VAERS data. You could argue that this was a small number compaired with the doses distributed, but the lead researcher who developed the vaccine says that the rate of serious adverse events is “on par with the death rate of cervical cancer”. Hmmm – possibly get cervical cancer which is treatable if caught early through regular pap smears, or possibly get struck down as a teenager by death or paralysis or autoimmunity? Tough decision. And most people simply fight off the HPV vaccine without developing cancer.

Lots to consider here, but bottom line — don’t accuse Barbaraj of spreading falsehoods.

Autism is a great playing field for this rhetoric, we are all fearful, we all have the need for answers, and using someone who has talent in any media be it blog,mags,tv, can be a great service to push forward a cause. Sadly not too many scientists have the gift, although it does bring to mind Rachel Carson, however for the most part scientists aren’t public speakers and are unable to exercise any control over media.

You suggest ANB that your choices must be better than mine, by negating science that has been already put into some questionable category by “someone”. I would like something from you, anything scientific, beyond your rhetoric.
I’m not certain how pharms managed to black list scientists yet obviously they have. Their practice of putting together studies and paying those that never touched or read the papers is what should be the concern. ex. Possibly Thorson, never read the paper, never saw the research, ran with the money that was probably his for his “services”.

“A Hann, S Peckham – The International Journal of Health …, 2008 – interscience.wiley.com
… Furthermore, it seems that there has been a significant number of adverse reactions to both
Gardasil and the placebo which have been ‘dismissed’ as ‘unrelated’—these include 17 deaths
and adverse events such as pain and swelling at the injections site and systemic effects … “

Oh ANB how dare you say “made up ingredient” , no one manufactures the truth! Do a little research!! Your local teaching hospital has a wonderful library!

Merck uses a very suspect method of comparing vaccinated to the controls in their studies. Note, the “placebo” group is comprised of two separate groups one with aluminum adjuvants the other with saline. The purpose of this seems to allow for combining of placebo groups to show similar side effects. Could it be that they know aluminum is often the cause of such side effects? Take a look and see what you think, a neat way of twisting the science to “work” for them. The seventeen deaths that were discarded were not among the car accidents and gun shot fatalities . There is no one watching and there NEEDS to be.

http://74.125.155.132/scholar?q=cache:Na9pMGT1iyQJ:scholar.google.com/+gardasil+ingredients&hl=en&as_sdt=20000000

@ANB..”what’s so dangerous about gardasil”

One of the “scary (NOT) made up ingredients” is sodium borate. It is an insecticide. No one knows how something that is designed to kill a “bug”, will affect human dna or human cells ,some suspect neurological effects because of it’s mode of action. I don’t believe it should be the right of any parent to have their child injected with this, in another arena it would be considered child endangerment. Google the MSDS, this ingredient has never been studied, outside of lethal dose info. It’s an “unknown”. Perhaps AOA isn’t the bogey man after all!

http://health.nytimes.com/health/guides/poison/sodium-borate-poisoning/overview.html

Hi Lisa,

According to Wiki, 1500 US kids are murdered each year. Among younger kids more than 60% of the victims were murdered by their parents.

So stories like this mother from Texas seem to me to have nothing to do with autism—they are sadly just part of every day life.

To my mind blogging about them only increase apprehension, feelings of being overwhelmed etc in the community. Is there any value in bringing them up?

W&N

Hi Lisa,

Re # 25

I understand your concerns about using terms like “anti-vaccine” or “anti-science” etc.

My 2cents: this is a two-way street.

Pejorative descriptors shouldn’t be used and people have an obligation to be responsible with their postings–especial ones that could influence other parent’s health care decisions.

An example: how to run clinical trials. This topic falls under the study of statistics.

There are millions of people that are qualified statisticians and about zero of them fall into the vaccines cause autism camp.

It is fine if a person wishes to post about clinical trials or criticize a trial, but first they need to have some basic understanding of how trials are run and they should read the trials they are posting about.

If you are going to criticize the use of a placebo in a clinical trial, it is only rational and responsible to first research the correct use of placebos so that one can make an informed, sensible argument.

OTOH, when a person uncritically posts statistical arguments that have been universally rejected by statisticians,

Or posts carefully edited, selective quotes from a paper they don’t seem to have bothered to read,

Or tries to imply that when people die in accidents during a clinical trial, that this demonstrates that the test vaccine is dangerous,

Then I think it is fair to call such a person anti-vaccine/ anti-science because their decision making processes is simply indefensible.

W&N

Hi Lisa,

Re # 21

I think the comments along the lines of “knowing poisoning” etc are inevitable.

I suppose that they reflect (i) a variation of cognitive dissonance, (ii) the fact that we are in the end-stage of the biomedical/vaccines cause autism con. If you ignore the drama and flaming rhetoric, the reality is that we have moved into the legal clean-up of the charlatans.

OSR1 is perfect, perfect in the sense that the basic facts of the story are so clear and entirely typical.

1) OSR1 was obviously, flagrantly illegal
2) It was marketed as completely without toxicity, when in fact more than 2 years ago CTI submitted data to the FDA that demonstrated toxic reactions—some of which were potentially lethal. In simplest terms, the safety claims weren’t truthful.
3) It costs about 2cents per pill to manufacture, but was sold for ~$1.17 per pill. Reportedly millions of pills were sold. The math is obvious.
4) The diagnosistic tests used were completely bogus, and rigged such that no matter what the results were all kids could be diagnosed as needing OSR1.
5) While no one is sharing the economics, the “angels” of the biomed community appear to earn profit margin 100’s or 1000’s or more times greater than standard physicians.
6) They achieved just over 70% purity in the chemical synthesis of OSR1, the almost 30% impurities contains extremely dangerous chemicals. No sane argument can be made that this should be given to people.
7) They lie about the nature course of autism. It is characterized as a development DELAY for good reason. Kids with autism generally get better. They claim that improvement is rare or never occurs and then take credit for the normal development of these kids.
They kept right on selling it–right up to the last possible minute to avoid US marshals arriving at CTI with chains and padlocks.

And the key point: I can’t find any biomed friendly site that has made any—even the most trivial—effort to share the facts with their readers. To the contrary, the unconsciousable actions of CTI have been obscured by these sites and their readers deceived by misinformation.

But then in some sense doesn’t really matter. Between the FDA and patient initiated lawsuits I think this round of con-people will be (for all functional purposes) out of business in the next few years. Then ~ 5years from now we will be discussing a new way to con parents out of their money. I’m guessing bogus stem cell or gene therapies.

W&N

I most often do read the results of the trials, always if they are available. I don’t think the public understands the process, they believe it’s scientific, and don’t want to see the various ways the numbers can be skewed.
I actually laughed outloud when I read the lead scientist’s comments on the Danish study, he made the claim that no one need be concerned about the involvement of Poul Thorson, he just signed his name, never had the opportunity to read the study, let alone compile any of the statistics. There is a problem, today’s science doesn’t deserve our “faith”. I don’t know what more can be done until someone pushes these people into a court room and makes them accountable. Anyone here think it’s good science to continue to “load” adjuvants into a placebo for the control group? If so, I give up.

I posted a comment about HPV vaccines which had a lot of links and so must have gotten hung up in the security. In the meantime, I just want to express my support for Barbaraj.

Maybe someone should address the above considerations from W&N
“7) They lie about the nature course of autism. It is characterized as a development DELAY for good reason. Kids with autism generally get better. ”

and yes ..I do so hope for stem cell research to tackle autism

Thanks Twyla, I’m sure I’m a bit behind in recognizing the facts that scream “bad science”, however it’s become my new passion. It was hard to give up that “faith” as with an old shoe I was comfortable thinking someone was surely watching these drug companies.

Barbaraj, not sure i understand your comment. In fact, kids with autism generally do improve, to a greater or lesser degree, with various types and intensities of therapy and support. A small percentage do improve to the degree that they are no longer diagnosable with an autism spectrum disorder.

What is your concern with this statement?

The full quote that Barbara is objecting to is:
“7) They lie about the nature course of autism. It is characterized as a development DELAY for good reason. Kids with autism generally get better. They claim that improvement is rare or never occurs and then take credit for the normal development of these kids.”

It’s not uncommon to hear that when parents receive a diagnosis of autism for their child, they are told some version of “Autism is a lifelong disability. Just take him/her home and love him/her. You will need to consider institutionalization.” Later, if the parent finds medical treatments addressing the core causes of their child’s autism (such as detox, supplements, treatments of immune system and digestive issues) and the child gets a whole lot better, maybe even able to converse and do schoolwork, maybe even losing the diagnosis of autism, the parents are told, “Well, kids with autism often get better. It wasn’t because of those treatments — just a coincidence.” (One of many coincidences, such as kids regressing into autism after vaccines and the rate of autism increasing in tandem with the vaccine schedule expanding.)

W&N’s comment #38 paints a picture that is out of step with reality, where he says those who medically treat autism are charlatans and this way of looking at autism is on the way out. Actually, the biomedical paradigm of autism is here to stay. All the stories of vaccine injury and of recovery with biomedical treatments deserve much more study, not derision.

People with autism may sometimes get better naturally, but without good treatment this is the exception, not the norm. It is wrong to dismiss stories of response to treatment as simply due to natural development.

This is not a simple picture; it’s possible that some people with autism improve naturally, and of course there are bound to be some charlatans. But there are also a whole lot of incredibly intelligent and dedicated practitioners who are helping some people with autism get a lot better. This is the wave of the future, not something that is dying out. If our government were not so terrified of admitting to problems with the vaccine program, government resources would be invested in studying these treatments.

I don’t have time for a protracted arguement with W&N, and I don’t have sufficient expertise to debate the pros and cons of OSR1.

I will add, since W&N’s comment was in response to Barbaraj’s comment, that I agree with Barbaraj that there are pharma executives who know that some children are being harmed, but I certainly don’t call for their execution. The U.S.A. is not like China, where an executive was executed after babies died from contaminated formula.

I don’t think there’s any doubt that many if not most people with autism build skills over time, with or without any particular set of therapies. Many, however, despite improvements and development of new skills, don’t get past the point of moderate to profound challenges.

The question of “how far would Johnny have progressed without X treatment,” though, is very very tough to answer. Was it therapy A, B, or C that made the difference, or was it simply the natural progression of Johnny’s development?

My own son has built a great many skills over the past few years, yet he was homeschooled and the only therapy he’s had is speech (and one session of “social skills” coaching). Would he have progressed further with something else/different? Would he have progressed less impressively? Of course there’s no way to know!

Lisa

Hi Lisa,

Re #44

You make an important point: assuming you don’t have a time-machine. there is no way to know for sure what the impact of any given intervention is for a particular kid.

A very different issue is the ethical obligation to demonstrate the efficacy of an intervention prior to using it on patients.

No one is asking for perfection—100% safe interventions that completely cure 100% of kids. But before selling some treatment, one needs reasonable data to show that it works in some significant portion of kids. In other words, that the benefits out weight the risks.

Unsurprisingly, I can’t find any such data to support the biomed treatments. Nor do any of them seem interested in generating the needed data. It is almost as if they know that the treatments will fail a fair evaluation…

W&N

Hi barbaraj ,

Re #39

I think that all that is left are lawsuits and the psychology of how people avoid facts they don’t like.

You didn’t actually read the 12 Gardasil trials or the Hann paper before commenting on them did you? Why else would you offer deaths that couldn’t possibly have anything to do with the vaccine as evidence of its danger?

Anyway…..

(1) Poul Thorsen—the situation is a matter of public record. There is an investigation into possible missing funds and the investigators have explicitly stated that no specific person has been named. This is just another example of completely immoral character assassination by the biomed community. Despite this misinformation being corrected countless times over many months I can’t find anyone in the biomed community with basic decency to tell the truth.

(2) If it does turn out that Dr. Thorsen is a crook, then still there is no for concern. This garbage inflames lots of rhetoric online, but it is just the con-people praying upon the public’s ignorance of the situation. Great for selling snake-oil, but wilts when examined by qualified people because this argument is just plain stupid.

(3) You can pretend differently forever, but the fact is that these issues have been pushed into US courts (no, not just the vaccine court). The complete scientific fraud of the biomed arguments has been documented, the unethical conduct of their attorneys has been exposed, and the biomed community continues their miss-information campaign and untruthful states that these court cases don’t exist.

(4) And there is very good reason for the courts to be contemptuous of the biomed community. Take the issue of the correct use of placebo controls in clinical trials.

The use of Alu in the Gardasil trials is scientifically 100%, absolutely correct. If you bother to research the issue, the “anti-vaccs” have been misrepresenting the correct use of controls in vaccine trials since at least the late 1990’s. After more than a decade of correcting their miss-information there is nothing left but to question their integrity.

Here is where psychology comes in: no matter how absurd these criticisms of the Gardasil trials, the true believers simple refuse to learn the facts. Which I suppose is why they are marginalized to yelling on the internet….

W&N

Hi Twyla,

Re # 43

I give you the entire biomed community—now can you please give one example where the natural course of autism is correctly described?

Nope? I didn’t think so.

And no, I disagree with your statements about coincidences—I don’t think the key issues are in anyway coincidences.

While you claim: “People with autism may sometimes get better naturally, but without good treatment this is the exception, not the norm.”

The fact is that all the way back to Kanner it has been observed that kids with autism often get better. With 70+ years of data—most of which was when there were no “good-treatments”–we can say with absolute certainty that your claim is incorrect.

In short, you have exactly proved my point: you have spent lots of time “learning” from the biomed community and they have misled you.

There is not a shred of evidence that any kid has been helped in anyway by biomed treatment.

There is overwhelming evidence that parents have been deceived by bogus testing, lied to about the nature course of autism, and then tricked into believing that their kids have been helped by treatments when in fact they are just progressing normally.

It is not coincidence that you have been misled about how autism progresses because this is part of the con to separate parents from their money.

It is not a coincidence that the biomed community discourages parents from reading the omnibus where it is demonstrated how biomed community deceives parents into believing that regressions occur after vaccinations when in fact they didn’t.

It is not a coincidence that biomed community asserts that autism has increased in tandem with the vaccine schedule without providing the data since this isn’t true.

You can perform the ostrich maneuver forever if you wish, but it is all about scanning money from parents.

Yes I do agree that until there is an effective treatment for autism, there will be some form of biomed. But I do believe that the current leaders will be sued out of business/be in jail. But I have no doubt that a new round of con-people will gladly take their places.

W&N

Hi Twyla,

I wanted to comment on your posting #19– “fringe anti-vaccine website”

Well of course AoA is criticized; it is clearly doing damage to the autism community.

This damage comes from their failings in terms of competency, integrity, and honest.

You can pretend otherwise if you wish, but they get pretty much everything wrong. If you go back to the initial “letter from the editor” it isn’t just wrong, it fails 3rd grade math. This is sadly par for the course—there is simply no way to honestly defend their arguments.

And YEAH Twyla is a decent person who writes to the editors that a posting suggesting beating in people’s brains with frying pans should be removed—but they didn’t. This is no big surprise; their grossly unethical conduct is obvious.

OTOH, they continue to promote the Hewitson monkey paper. It is hard to understand how anyone could get through middle-school and honestly believe this study, but they seem to…

But wait, someone made a completely reasonable posting that demonstrated that the Hewitson paper is completely bogus (but hey it might make the authors rich!). And what did the AoA editors do? Nothing at first, but once they understood the data they removed the posting.

There is no way around this—AoA editors know the truth and are concealing it.

PS you might want to reconsider your clapping for the DeSoto comments. The science is grossly misrepresented—but then there is no way that anyone qualified in genetics or statistics will ever be allowed on AoA. More to the point, the interview isn’t functionally literate. You can easily see this if you compare the interview with the paper. But will you?

The damage they are doing is very, very clear.

W&N

Yeah, some of those Kanners kids got better, for example: “Donald T. — Case 1 among children diagnosed with autism in the 1930s — showed marked improvement in his autistic symptoms after being treated with gold salts for an attack of juvenile rheumatoid arthritis. That’s according to his brother, who we interviewed earlier this year in the small Mississippi town where he and Donald, now 72, still live.”
http://www.ageofautism.com/2007/12/the-experts-the.html

Sorry, W&N, I don’t have time to respond to all your inaccurate assertions, so I will just say that I totally disagree with just about everything you say, and that AoA is certainly not dishonest, and certainly not damaging the autism community!

Regarding Gardasil, Lisa it would be great if you could pull my Gardasil comment out of the security holding tank (for comments with too many links).

I’m not really concerned about Thorsen , W&N, it appears it’s “rightfully his money” by way of his signing off on a study to promote the safety of thimerosal. A “get it done” payment. Why it was brought up, uncovered, was probably an oops .
Kreesten Meldgaard Madsen, the lead author, said Thorsen played a minor role.

“Dr. Thorsen was not in a position to change or compromise the data,” Madsen wrote. “Dr. Thorsen was part of the review cycle, but never very active in giving input. Dr. Thorsen never had access to the raw data nor the analysis of the data.”

It seems he is paid well for his autograph!

(One of many coincidences, such as kids regressing into autism after vaccines and the rate of autism increasing in tandem with the vaccine schedule expanding.)

The rate of autism did not increase in tandem with the vaccine schedule. This is a demonstrably false statement.

ANB..The statement is true. You have no evidence to suggest otherwise.
Thanks Twyla, I just read your post concerning the deaths surrounding HPV vaccine. Yes, and the fact that the researchers themselves have questioned the value of this vaccine is the most important element IMO. To make claim to a similar number of deaths from this vaccine as compared to cervical cancer deaths is alarming. These children are innocent victims! Again, vaccines have a way of shifting mortality to a different age group. This is not deaths in older women, this is death in children. How can this be a satisfactory comparison.? In my way of thinking, HPV vaccine may well be the “ONE” that brings the pharms down. It was pushed to market with no known value for the vaccinees,it does not cover all hpv variants, leaving nature to “historically noted” select another to perhaps increase in virulance.
W&N I did not say that aluminum isn’t the status quo in trial control “placebo” vaccine, I said it is very suspect as a method, a placebo should have no “action”. It’s a dirty,deceitful method .

oops..left off my “example”..
http://www.ncbi.nlm.nih.gov/pubmed/7468641

Hi barbaraj,

Very kind of you to exactly demonstrate my point about the only thing left to discuss is psychology.

Yes we all noticed that you didn’t answer the question—I gather you didn’t actually read the Gardasil trials or the Hann paper which would explain why you totally misrepresented the facts.

Pretty simple idea here: you can’t make any rational argument on the safety of Gardasil without getting the basic facts correct.

Try reading again, I pointed out that use of Alu in the placebo was 100% scientifically correct

And when you post: “I said it is very suspect as a method, a placebo should have no “action”. It’s a dirty,deceitful method”

You really mean that there is absolutely no way you will ever bother to learn the correct way to use placebos in a trail.

After all with this knowledge, not only would you learn who the villains are, but you would also see how easy it was for them to deceive you with an absolutely absurd criticism.

Also I find your callous disregard for the lies and personal attacks on Dr. Thorsen totally indefensible. Do you simply not care what the truth is?

Finally it is extremely helpful when you argue that autism rates increased in tandem with increasing vaccine schedule. Pretty much everyone on line has Excel. Using Excel and basic math everyone here can prove for themselves that this simply isn’t true.

So are you going to ignore this falsehood too? Or are you willing to prove the facts to yourself?

Of course the real risk you run is learning the scientific and ethical emptiness of the biomed movement. So I am guessing that you will find some excuse not to make a good faith effort to look—it all comes back to psychology.

W&N

“lies and personal attacks on Dr. Thorsen”? Give me a break!
http://www.huffingtonpost.com/robert-f-kennedy-jr/central-figure-in-cdc-vac_b_494303.html

Hi Twyla,

Re #55

Too bad you didn’t pay attention to my posting #46 and say read the actual police/university statements about the issue.

Now I understand that it might be extremely painful for you to realize the gross immorality and dishonest of this anti-vaccs behavior

Still I think that the only moral course for you is to compare your link with the facts of the case and see how blatantly they have lied and how easy it was for them to deceive you.

W&N

W&N – you’re welcome to comment on the topic, but please refrain from commenting on Twyla’s morality (or anyone else’s). Thank you.

Lisa (autism guide)

“W&N – you’re welcome to comment on the topic, but please refrain from commenting on Twyla’s morality (or anyone else’s). Thank you.”

Shouldn’t that go for ANB, too? I’ve seen multiple occassions in this thread alone where he accuses someone of lying, making things up, and accusing them of being anti-vaccine because he is unable to provide evidence to contradict their position. Why is he allowed to post here?

Teacher – you’re right, it should and does go for ANB, and I have raised this issue with him and others before.

HOWEVER!

I am very aware that there are differences of opinion among people in the autism community, and often those differences give rise to strong feelings. Everyone who posts here, so far as I am aware, is posting with a sincere desire to promote truth and to do what is best for children, adults and families living with autism. That goes for ANB, Twyla, you, and everyone else who regularly posts here.

If, at any point, a “troll” appears on this site and starts writing nasty notes just to make trouble, I’ll deal with it. Until then, no one is getting blacklisted!

Lisa

That seems to be an ongoing problem, I know it doesn’t bother me, I can’t speak for Twyla , however, I don’t mind being called an “idiot liar” if that is what it takes to bring these issues forward as well as the truth to the front.
Scientists for the most part, aren’t chosen to speak to the safety or the politics of pharm products, this is done by the hired guns who are paid pr people . I will give it to W&N, his method of pushing his position is strong. However, there is something Twyla has that I find somewhat similar to Rachel Carson, a soft way of presenting science. There is no need to “name call” when presenting facts.
If you’d like to do a math problem W&N , using the reported by the CDC rate increase, take that number, determine the percentage of autistic boys we will have with the birth year 2010. Then using the same statistical increase use birth year 2020. Are you frightened enough yet? It’s time to stop the “legal methods” used to hide the truth. Thimerosal for example used in the processing doesn’t need to be labeled, aluminum does NOT need to be in the control. Combining results of an aluminum group and a saline group to compare safety to the active vaccine may be status quo science but it’s less than honest. BTW I read Mercks study, clearly ,if you read it, you already know W&N that it’s nothing more than a promotion of a product without concern for safety. I say “clearly” because I don’t think you are dishonest or stupid, I think you are looking at this from the viewpoint of one who believes in corporate honesty and maintains a kind of faith.

This Woman is, and probably never was, capable of having “normal” kids. Outside of the fact that this hits the nose on a secret desire of some parents to get rid of their Autistic child, crazy parents do stuff like this to their kids. This is about the Mother who had it in her nature to harm her own children, not about the children, no matter who they were, now we will never know.

Lisa, what is the preferred method of pointing out that someone is spreading falsehoods? May I say that Twyla and BarbJ are “taking liberties with the truth?” What are the identifying characteristics of being anti-vaccine? Or is there simply no such thing as “anti-vaccine”?

ANB, what I said is that each person writing on this blog is sincerely stating what he or she believes to be the truth. I could be wrong; I don’t know any of you personally, so can only assume that each of you is in fact sincere.

When you disagree and point to studies and findings that are in contradiction to what Twyla or Barbaraj are saying, that’s just fine. When you (or anyone) accuse someone else of immoral behavior, it’s not fine.

That’s a simple response – and I intend to keep it simple.

Lisa

From reading ANB’s exchanges here on this board and on several others, it appears as if his prefered method of “disagreement” is to hurl verbal slanders at the person whom he is disagreeing with instead of providing evidence that their views or statements are incorrect. Because someone does not agree with him, then they are anti-vaccine, which is simply ad hominem.

Apparently, he believes that anyone who agrees with him is “pro-vaccine” and anyone who disagrees with him is “anti-vaccine.” Since, in his view, someone who is anti-vaccine is completely irrational and loony, then their ideas and arguments should be dismissed accordingly. This is a type of marginalization that is inherently polarizing, and does not create a friendly environment to discuss anything.

Instead of insulting a person whom he disagrees with, he could say, “I disagree, and here’s why.” Then he can provide evidence of why and how he disagrees. Instead, he calls them a liar and anti-vaccine.

Teacher, since you’ve already gotten my response, I assume this last comment is directed at ANB. And since this thread is becoming personal and antagonistic, I’m going to end comments.

Please feel free to comment ON TOPIC on future blog posts.

Lisa