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Autism vs features of autism

14 Mar

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

– HHS

If one has the right set of “features” of autism, one has autism……Hannah Poling has autism — as defined in every book, in every library, in every university in the world. Dr. Parikh’s insistence otherwise is perplexing.

– David Kirby, to EoH group in response to Dr. Parikh’s article in Salon.

Its a massively ambiguous point. Do ‘features of autism’ equate to a _diagnosis_ of autism? David Kirby and some commenter’s to this site say ‘yes’. I personally think ‘no’.

But I think we need to be clear here. In this particular case, Hannah Poling can still be autistic but the HHS are arguing (in my opinion) that the features listed as those being aggravated/caused by vaccines do not add up to enough by themselves to give a diagnosis of autism.

To illustrate this idea, I went through the symptoms given by Dr Zimmerman that he put forward as being vaccine aggravated in a previous post (green = hit with DSM (IV), red = miss):

1) Loss of previously acquired language
2) Eye Contact
3) Relatedness
4) disruption in CHILD’s sleep patterns,
5) Persistent screaming
6) Arching
7) the development of pica to foreign objects,
8) loose stools
9) CHILD watched the fluorescent lights repeatedly during the examination

So, three of the symptoms given by Dr Zimmerman as being vaccine aggravated can be matched with the DSM (IV). This is way below what is needed for a diagnosis of autism.

But, we cannot discount the idea that she _could be_ autistic. To me, it seems likely that here is an autistic child who has her vaccines and who presents with nine symptoms following those vaccines, three of which tally with DSM (IV) criteria.

This presents two questions. First, is there a difference made by autism diagnosticians about autistic features vs a diagnosis of autism?

The best way to answer this is to ask autism diagnosticians. I wrote to some autism diagnosticians. They asked to remain anonymous, which I have to respect. The email I sent in essence asked them if they thought that:

a) ‘with features of autism spectrum disorder’ is directly equivalent to a diagnosis of autism?
b) ‘with features of autism spectrum disorder’ means that some elements of the DSM (IV) are present but not enough to diagnose autism?
c) ‘with features of autism spectrum disorder’ means that some elements of the DSM (IV) are present but not enough to diagnose ASD?
d) ‘with features of autism spectrum disorder’ means something else entirely?

The responses I got back stated that b) was most likely, maybe c) .

So according to these autism diagnosticians, some elements of the DSM (IV) are present but not enough to diagnose autism, or possibly ASD. This tallies with my own personal opinion.

The second question is; did Hannah Poling present with any diagnosable symptoms of autism _before_ her vaccines? Sadly, it seems we will never accurately know the answer to this question. The Poling’s will say no of course. David Kirby et al will say no of course.

I will remember the Cedillo’s however, who testified that their daughter (who they claimed was made autistic by vaccines) showed no symptoms of autism before her vaccines were administered. However, when home movies of their daughter taken before her vaccines were shown to several diagnosticians, they testified that she was indeed exhibiting symptoms of autism prior to vaccine administration. The Cedillo’s didn’t lie. Its simply not possible to remain clinically objective about one’s own child. Even for an employee of Johns Hopkins, it is not possible to remain objective about one’s own child.

That doesn’t mean Hannah Poling _did_ exhibit symptoms of autism prior to vaccines of course. It simply means that we need to be skeptical of the claim that she didn’t.

Is Hannah Poling autistic? Could be. Seems likely.

Did the vaccines cause the nine symptoms Dr Zimmerman found? HHS ‘concede’ they did.

Do the fact that three of those nine symptoms tally with the DSM (IV) mean that the vaccines are the cause of her autism? No, thats not logical.

Hannah Poling – Fine Points of the Law

11 Mar

The person answering the questions below is someone very familiar with the Vaccine Courts. I agreed to respect their privacy by not naming them but for ease of reference I’ll refer to them as Legal Larry.

David Kirby says:

In this case, HHS agreed to pay out compensation and there was no need to go to a hearing. The Polings could not reject the compensation agreement and insist on a hearing if they wanted to. This was supposed to be a test case. But the government did not want this to go to a hearing, not the Polings. But the family had no choice. Someone please correct me if I am wrong, but when you apply for VICP compensation, and you receive it, it’s pretty much take-it-or-leave-it at that point, very much unlike a regular civil lawsuit that might get a settlement “offer.”

Legal Larry says:

….I have seen the misunderstanding circulating. It appears to flow from an unfamiliarity with litigation. Vaccine litigation under this program really is no different than traditional litigation. Simple example: you accuse me of breaking your fence; I contest. You sue me since I disagree with your charge. As plaintiff, you have the burden of providing sufficient evidence for your case to proceed. You provide pictures of my tractor after rolling into your fence. I review those pictures and say “you are right.” I CONCEDE my liability to you. No trial is necessary, there is nothing to try. You have to accept my concession, or drop your claim against me (logically you cannot contest my concession without contesting the very basis for your filing your claim). Now, we have to resolve the damages. You ask for $1000, but after reviewing the damages I offer you $200. If you accept my offer (or we negotiate a different amount,say $500) we have SETTLED the case and it ends. If you reject my offer and we can’t agree on another number, the case proceeds to trial and the court will determine the amount. Apply the above to the Polling matter. *People are using concession and settlement synonomously and thus incorrectly*. I hope this helps.

Legal Larry was asked:

when you state ” If you reject my offer and we can’t agree on another number, the case proceeds to trial and the court will determine the amount. ” does “proceeds to trial” mean that it goes through the full trial procedure or does it mean that the awards phase is determined at trial?”

To which Legal Larry answered:

….just the awards phase, the concession eliminates the issue of liability – I conceded that I damaged your fence.

So, from that exchange we can see that David Kirby is half right. Within the context of the Omnibus, the Polings could not reject the ‘concession’. However, they could have rejected the settlement offer and gone on to a trial procedure to determine the final award. We can also see that concession and settlement are not the same thing at all.

But now we get to some murkier ground (who knew the autism community would have to become lay-person briefs as well as lay-person scientists eh?) because the fact is that the Poling’s could easily have rejected the whole damn thing. Sullivan on GM/WM did some work on this:

Now, what happens if they decline? They can file in Civil court.

Why does that matter? Well, consider the fire and brimstone from David Kirby:

Someone please correct me if I am wrong, but when you apply for VICP compensation, and you receive it, it’s pretty much take-it-or-leave-it at that point, very much unlike a regular civil lawsuit that might get a settlement “offer.”

I think you may be wrong Mr Kirby. They could’ve left it and gone for a Civil court action.

The Polings could not reject the compensation agreement and insist on a hearing if they wanted to.

Yes, they could have, See above.

And if anyone asks you why the family attorneys agreed to settle the Poling case, tell them they don’t know the first thing about Vaccine Court.

The issue is, I think that because people such as myself are suspiciously asking why the Poling’s agreed to the concession at all if they felt they had such a water-tight case. If they’re right then this case could’ve been the very first court case to ever establish vaccines are complicit in autism. The argument Kirby is putting forward is not correct. *The Poling’s could have rejected the claim and fought their case in trial* .

Why didn’t they?

Now let me be absolutely honest. If I was them, neither would I. Civil Courts require a scientific standard of proof. The Vaccine Court does not. In other words, the Poling claim in a Civil Court would’ve rested on _science_ .

I’ll be even more honest, I am happy to think of Hannah Poling have enough money to take care of her her whole life. This is one of the ethical conundrums of the Omnibus hearings for me. If it were up to me I’d like to see all 4,800 kids get enough money to assure their futures.

But is this the right way? The Poling’s could easily have rejected the ‘concession’ and gone to a Civil Court. They have elected not to. Over the last week there has been lots of breathless talk about fat ladies singing but by agreeing to the ‘concession’ that is absolutely the last thing the Poling’s have helped bring about. They have agreed to a statement that states that their daughter’s autism was not caused by vaccines. If they think it does, they should have gone to a Civil Court.

Again, I ask, why didn’t they?

Evidence of Misinformation

7 Mar

This entry is once again guest blogged by SL. I’d like to thank SL once again for providing clarity on a massively complex issue.

I’m going to try and break down some of Kirby’s most confusing points he makes with regard to autism and mitochondrial disease. He is misleading, irresponsibly selling falsehoods and half-truths as fact. As Jon has pointed out on LB/RB, his math is way off at times. I’ve spent hours reviewing scientific studies, and hopefully can further clear up any confusion Kirby may have created.

Evidence of Misinformation # 1

Mitochondrial disorders are now thought to be the most common disease associated with ASD.

Well, it took some digging, but I found where Mr. Kirby came up with this one-liner. You will find a similar (yet, not really what he says) statement in here:

A minority of cases of autism has been associated with several different organic conditions, including bioenergetic metabolism deficiency. In a population-based study, we screened associated medical conditions in a group of 120 children with autism (current age range 11y 5mo to 14y 4mo, mean age 12y 11mo [SD 9.6mo], male:female ratio 2.9:1). Children were diagnosed using Diagnostic and Statistical Manual of Mental Disorders criteria, the Autism Diagnostic Interview – Revised, and the Childhood Autism Rating Scale; 76% were diagnosed with typical autism and 24% with atypical autism. Cognitive functional level was assessed with the Griffiths scale and the Wechsler Intelligence Scale for Children and was in the normal range in 17%. Epilepsy was present in 19 patients. Plasma lactate levels were measured in 69 patients, and in 14 we found hyperlactacidemia. Five of 11 patients studied were classified with definite mitochondrial respiratory chain disorder, suggesting that this might be one of the most common disorders associated with autism (5 of 69; 7.2%) and warranting further investigation.

That last line sounds vaguely familiar right? Except, Kirby sold it as truth. Whereas in the study, it is presented as a thesis to be proved later on. A suggestion, a possible link, warranting further investigations. That’s much different from Kirby’s statement of fact, that mito *IS* the most common disease associated with ASD. Also, this study presents us with a figure of 7.2%, we’ll need this number later on.

Now, perhaps I’m wrong here. Maybe Kirby is getting his information elsewhere. So, then, what are his sources? Does a study exist which compares children with autism or autistic features who also have mito vs. those who also have other genetic disorders? How do those numbers compare? With the myriad of genetic disorders, I’d be highly interested in this. There’s a reason why so little is known about mito: it is a RARE disease. Has Kirby seen additional studies? Can he offer us large numbers of autistic children, being shown to have mitochondrial disorder too? No, he has one court case that he is referencing. He is using made-up figures and for some reason, fantasizes about autistic children having a mitochondrial disease.

I did find a few actual studies that I can reference. And, none state that mitochondrial disease is the most common disease associated with autism. I wonder about the Autism Genome Project Consortium’s study study with the strong link to Chromosome 11. Or the review by the Autism Research Unit UK, pointing to gastrointestinal problems, viral illnesses, and genetic disorders as factors in autism.

This study shows that “several metabolic defects have been associated with autistic symptoms with a rate higher than that found in the general population.” This essentially argues the opposite of what Kirby states. There are more autistic symptoms seen in some people with metabolic disorders than compared to the rest of the population. If I have Group A (General Population) and Group B (persons with metabolic disorders), according to this study, Group B will have more more people with autistic symptoms. This does not say that within a group of autistic individuals, metabolic disorders are most prevalent. Also, the study says “autistic symptoms” which is not the same as autism. Children with gastrointestinal dysfunction, seizures, etc. associated with a metabolic disorder could very likely appear to have “autistic symptoms.”

Another factor to consider is proper diagnosis (ruling out autistic features being secondary to a disease, vs. being true autism), and that any child presenting with autism or autistic features, should be screened properly. It is reasonable to rule out certain genetic and psychological disorders, such as those mentioned here. Equally important, with regard to mitochondrial disorders, is how samples are taken and tested. If someone unfamiliar with mitochondrial diseases, or a lab is improperly equipped, you may get inaccurate results. Also, because someone has “markers” for a disorder, that does not mean they definitively have that disorder or disease. In the majority of cases, an autistic child does not have a primary disorder, such as mito.

Evidence of Misinformation #2:

Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.

Again, Kirby uses the same language to try and make his point. The words “some” and “other” should be the first red flags you see. What journal articles? What “other analyses” can be cited? It would be so very helpful if he would document where he gets the 10-20% figure from. This would be of great help, and would further this discussion. If he has real sources, scientific studies, any type of evidence of this, share it. I am not entirely against the idea that 10-20% of autistic individuals who have had a true regression, also have mitochondrial disease. I said it in a previous post – if a child has a well-documented, real regression, other things should be looked into (like mito, genetic disorders, etc.).

Remember that 7.2%? That is the only figure I was able to find in regards to the prevalence of mitochondrial disease in children diagnosed with autism. It is from the study I have posted above. 7.2% seems rather high, and certainly many more studies would need to be done to come to a more accurate figure. Another concern is the methods in which these children were diagnosed (i.e. tissue biopsy). Regardless, 20% is quite a jump from a documented 7.2%.

Here are some real numbers regarding mitochondrial disease, as well as autism. From the Cleveland Clinic:

About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

According to The Mitochondrial and Metabolic Disease Center (at UCSD):

Four million children are born in the US each year. This means that 1000 to 4000 children will be born each year with mitochondrial disease. By comparison, about 8000 new cases of childhood cancer are reported each year. Both mitochondrial disease and childhood cancer range in mortality from 1O to 50 percent per year, depending on the specific disease.

Going with the CDC’s 1 in 150 figure and Cleveland Clinic’s 4 million births per year, we can pull some more numbers from Kirby’s 10-20% theory. Currently, there are 1000 – 4000 children born with mito each year, or 0.03-0.10% of all births. Compare that to 26,670 (or 0.67%) estimated number of autistic individuals born in a year. If 10% of autistic children have mito, that means 2,667 additional children would be born with mito. At 15%, you have an extra 4000, at 20% an total of 5,333 more children would be born with mito. The likelihood of mito then increases up to 0.23%. That’s a substantial increase in cases of mitochondrial disease. And they portray autism as an epidemic?

And, speaking of the so-called “Autism crisis,” Kirby’s idea that 10-20% of autistics really have mitochondrial disease changes the rate of autism quite a bit. Autism figures would start to look more like 1 in 187. If indeed, 10-20% of autistics (2,667 – 5,333) truly do end up having mito, what would be the advice to those families with regard to vaccines? Who will be held accountable when families who have mitochondrial disease are devastated to find out how vital those vaccines are to their children?

Is Kirby also aware that in some families with mitochondrial disease, children can be affected to varying degrees? The argument may be that this “autism-mito” group is “less-affected” by the disease. Well, their siblings, including those born in the future, could be born with more severe forms of the disease. People have led countless numbers of families to forgo their vaccinations. What would be suggested when a family who only vaccinated their eldest (autistic) child, has 2 more children, both of which have more severe forms of mitochondrial disease? What would be said if one of those children died after being infected by a disease that could of been prevented had the family been properly vaccinated?

Evidence of Misinformation #3:

Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.

Below is the actual report from the study. This is the study that Dr. Poling also co-authored, interestingly enough. I assume he prompted this study, following his findings with his own child. I assume the girl in the case is in fact, his own daughter [It is – KL](test results are the same).

To determine the frequency of routine laboratory abnormalities in similar patients, we performed a retrospective study including 159 patients with autism (Diagnostic and Statistical Manual of Mental Disorders-IV and Childhood Autism Rating Scale) not previously diagnosed with metabolic disorders and 94 age-matched controls with other neurologic disorders. Aspartate aminotransferase was elevated in 38% of patients with autism compared with 15% of controls (P < .0001). The serum creatine kinase level also was abnormally elevated in 22 (47%) of 47 patients with autism. These data suggest that further metabolic evaluation is indicated in autistic patients and that defects of oxidative phosphorylation might be prevalent. (J Child Neuro 2006;21:170—172; DOI 10.2310/7010.2006.00032).

Kirby leads you to believe that both figures (38 & 47%) come from the same total of participants. It does not. The 38% is from the total of the group of 159. The 47% comes from a smaller group (subset, perhaps?), consisting of 47 patients. Kirby presents this information in such a way, that someone not willing to look at the numbers, would assume that nearly half of the autistic children in this study have mitochondrial disease. This is not the case.

Interesting to note:
Creatine Kinase (CPK) can also be a marker for for heart attack, hypothyroidism, and several other diseases.
Aspartate aminotransferase (AST, previously known as SGOT) is more commonly a marker for liver disease.

Also, these are two of several “markers” found to be abnormal for my daughter. My daughter does *NOT* have mito. It’s quite a leap for anyone to make that abnormal results for these two “markers” qualifies as mitochondrial disease. As in the study at the beginning, this one at the end makes its conclusion using careful words like “suggest,” and “might.”

Sorry, Mr. Kirby, but the dots you try to connect and the holes in many of your statements are potentially misleading. It’s unwise to make false claims, presenting them in a “scientific” or at the very least professional sounding manner. Parents who don’t know any better, have limited time or resources, they read what you have written. They take it as fact, and base very important decisions on what they read from you. I would never want to be responsible for causing pain and suffering via unwarranted, invasive medical testing to numbers of children. I couldn’t look myself in the mirror if my recommendations (to avoid vaccines) proved to be harmful to the very families who were so very “loyal” to me.

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