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Autism and Mental Illness

10 May

So, the family have been away for four days on holiday – our first ever holiday! A very, very good time was had by all 🙂

But in the meantime it seems like the Autism News Juggernaut hasn’t even slightly slowed. I came back to a deluge of emails on subjects touching on autism but one really caught my eye.

This is the story about autism being linked to mental illness:

Parents of autistic children are twice as likely to have had psychiatric illness, researchers have discovered…A child’s risk of autism was 70% greater if one parent was diagnosed with a mental illness, and twice as high as average if both parents had psychiatric disorders, according to a report in the Pediatrics journal. The finding suggests autism and psychiatric problems may sometimes have a common cause and genetic link.

I’m trying to get ahold of this paper to read for myself but its totally unsurprising to me that this should be the case. As some of you know I have manic depression (bipolar as its known in the US) for which I have been receiving treatment for approaching 30 years. I have long suspected that there is an overreaching link between many flavours of mental difference – a hypothesis, born out in the scientific work of David Porteous who has been involved in pioneering science regarding mental illness and DISC 1 mutations. Long term readers of this blog may know that DISC 1 has a high association with autism too.

Indeed, last year, David Porteous gave a fascinating talk at last years MDF Conference in which he talked about the DISC1 connection to manic depression and included ASD amongst the constellation of ‘mental disorders’ that have some kind of interrelationship.

So, this news was no surprise to me at all. Yet to some others it seemed as if it was a slap in the face. A comment from a reader who saw this item reported at CBC said:

So what is being implied here? That mental illness in parents is an indicator /cause of autism in off-spring, or autism in children causes mental illness for their parents? On behalf of parents of autistic children I feel offended by this type of garbage research…

Which is a frankly bizarre way to look at this study. The study itself seems to be saying only what is presented in its abstract.:

This large population study supports the potential for familial aggregation of psychiatric conditions that may provide leads for future investigations of heritable forms of autism.

Its step one. Nothing about _cause_ has been discussed as far as I can tell from reading the abstract. Does that make it ‘garbage research’? Hardly.

Age of Autism Excels Itself

4 May

It’s my opinion that the blog Age of Autism has not ever once published a post that has contributed anything to the sum of human knowledge in a general sense, nor has it ever published a post that is designed to actually help autistic people live their lives.

However, every once in awhile, it publishes a post that is so monumentally stupid that I literally think the worse of myself for wasting time reading it. And here I am actually blogging about one. Sigh.

Such a post appeared today. It is entitled ‘CDC triggers measles outbreak’. The author of this post, ex-UPI journo Dan Olmsted says:

I’m starting to think we should rename the CDC the Centers for Disease Contagion. You’ve all seen the news that there are suddenly more measles cases in the United States and the CDC is blaming it in part on the increasing reluctance of parents to vaccinate their kids.

But it’s the CDC’s fault, and no other. Getting the “measles shot” means getting the MMR, and the MMR is “the autism shot” in the minds of many, many parents.

So, let me get this straight. It is the CDC’s fault that measles is making a return across the US? I see.

Its not, for example, the fault of the non-vaccinating upper-middle class soccer-mommies and daddies, for example:

Of the 64 people infected by the measles virus, only 1 had documentation of prior vaccination. Among the other 63 case-patients were 14 infants who were too young to be vaccinated. Many of the cases among US children occurred in children whose parents claimed exemption from vaccination due to religious or personal beliefs, or in children too young to be vaccinated.

Hell, no. _That_ couldn’t be the issue, right? Its obviously the CDC’s fault. Damn them for providing the vaccines and a schedule that has led to serious measles epidemics being held at bay in the US and the UK prior to the last 10 years of utter complacency and idiocy.

And why is Dan Olmsted happy to blame the CDC?

Let me tell you one reason why I’m not shy or circumspect about squarely blaming the CDC for this — because Jon Poling, Hannah’s dad, predicted something like this, or much worse, just a few week ago

And as we all know:

Dr, Poling is the real deal, educated at Johns Hopkins, devoted both to his daughter and his patients, tempered by reality. He’s mild-mannered. He’s mainstream. He’s credible.

Riiiiight. This is the same Jon Poling who was recently described by his co-authors as ‘muddying the waters’. The same Jon Poling who’s wife has been a subscriber to the vaccine hypothesis since at least 2001. The same Jon Poling who knowingly uses incorrect epidemiology.

I’m afraid that Jon Poling is right now in the process of extricating himself from the mainstream. And also from any concept of credibility. His refusal to approve access to information that would provide more accuracy to public statements members of his clique have made about the situation is testament to a man who is not governed by any reality other than a desire to push a pre-conceived agenda.

But really, the attempt to point the finger elsewhere by Dan Olmsted is nothing more than a childish ‘It wasn’t me! Its not my fault!’ when both logic and morality show quite clearly that if people decide to eschew something that might not only save their kids lives but the lives and/or well-being of the society in which they live then the finger of responsibility can only point in one direction.

Poling vs HHS – Something is definitely beginning to smell

30 Apr

Back in March I wrote a post highlighting my suspicion that we weren’t getting the whole story regarding the Poling’s. They had – at that time – failed to give permission to Dr Andrew Zimmerman to discuss the case, despite the fact that he was deply involved in the treatment abd diagnosis of Hannah Poling. He has still – to the best of my knowledge – not been given permission by the Poling’s to speak.

I also blogged Jon Poling’s own words on the subject of document release:

The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah’s records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

and pointed out the strange incompatability with what the _court_ said:

in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

where it is made crystal clear that the Poling’s had not in fact provided written consent to release their documents.

Further documentation from the courts has now been released which touches on this issue in more detail.

I want to thank M who can choose to name themselves further if they feel like it for helping explain these and for highlighting them in the first place.

The basic gist of this document is that *the Poling’s do not want all the information to be released* despite their oft-repeated claim to the contrary. What information do they not want released – and why?

Respondent points out in the filed Sur-Reply to Petitioners’ Motion for Complete Transparency of Proceedings (R’s Sur-Reply) that while petitioners “did undertake initial steps
necessary to permit discussion of their case before the Special Masters presiding in the Omnibus
Autism Proceeding and before representatives of the Petitioners’ Steering Committee[,] *[i]n fact,
it is respondent who first approached and asked for petitioners’ consent to permit the Secretary of
Health and Human Services to disclose medical information regarding this case* in order for the
Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.”

Now _this_ is a bombshell. It was _not_ the Poling’s who first wanted to release documents, it was HHS. They asked for the Poling’s consent to permit HHS to disclose medical information in order to ‘address innaccurate statements that were being made publicly’.

Well, well.

And there’s more. HHS had also heard aboout the press conference the Poling’s intended to hold:

Having received no response from petitioners, respondent contacted petitioners’ counsel to inquire about the proposed consent form and to “inquire whether press reports were true that petitioners were planning press conference for the following day.” Petitioners’ counsel replied to respondent, and represented during a status conference in this case, that the reports of a planned press conference were not true…….and two days later they held a press conference and appeared in
nationally televised and print interviews discussing the case.

So they lied about the press conference too. Petitioners Counsel is, of course, one Clifford Shoemaker.

What is going on here? Granted there are pre-conditions HHS also wanted placed upon the release of information but why won’t the Poling’s let key medical details that would ‘address innaccurate statements that were being made publicly’ be released right now? Why do they claim that they are asking for complete disclosure when it is clear they are not? Why did their counsel blatantly lie about the press conference?

This is very much an example to me of the ‘muddying of the waters’ that John Shoffner talked about recently.

Mitochondra and vaccines – the science

23 Apr

Dozens of autism cases (and perhaps more) currently filed in so-called Vaccine Court will almost certainly be compensated this year. Why? Because a little girl named Hannah Poling with a supposedly rare mitochondrial condition was recently compensated for her own vaccine injuries, including autism and epilepsy.

But I have personally identified at least a dozen (and there are reports of many more) children with cases in the court who meet the exact same medical criteria as Hannah, and whose cases will almost surely be compensated as well — each time with the attendant media fanfare.

My prediction is that, by Election Day, few Americans will still believe there is absolutely no evidence to link vaccines to at least some cases of regressive autism.

Thus speaks David Kirby in the Huffington Post. On the last point I have no doubt that he is correct. In fact, I’ll take it one step further – few citizens of the world, let alone America ill still believe there is absolutely no evidence to link vaccines to at least some cases of regressive autism.

However, I wish, with all due respect to David, like to highlight the differences in the above statement and the subtitle of his famous book. David talks of linking ‘vaccines to at least some cases of regressive autism’.

That’s quite a tentative statement when compared with the strapline ‘Mercury in Vaccines and the Autism Epidemic’

But that is really a side issue that I simply can’t resist highlighting. The main talking point was – by a strange quirk of irony – also published today as was David’s piece. The irony comes from David’s certainty that the Poling case means something in the greater scheme of vaccines/autism hypotheses. Once again, he makes the claim that her vaccines was a cause of her autism and once again he thinks this has a meaning to the science.

As my regular readers will note I have – with some frustration – been blogging the responses of some Mitochondrial heavy hitters in recent weeks. They don’t want to be unmasked on my blog but perhaps some of them are happier talking to the mainstream media.

In an article in Scientific American, Nikhil Swaminathan (whom I spent a couple of hours chatting to long distance recently) talks to Salvatore DiMauro who is perhaps the ‘heaviest hitter’ of them all when it comes to mitochondrial issues. He says:

the point mutation mentioned in Poling’s case history–published in the Journal of Child Neurology–would imply that both she and her mother carried the genetic variation in all their tissues. So, he says, “you would expect to see the same results” in both the mother and the daughter. But Poling’s mother, Terry, who is an attorney and a registered nurse, is not autistic.

That suggests the genetic defect responsible for Poling’s condition is part of her nuclear DNA, which is separate from the mitochondrial variety, says DiMauro. This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation.

And even more tellingly, John Shoffner who co-authored the case study paper on Hannah Poling had this say:

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. “If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something,” he says, “would you arrest the person sitting right next to them?”

And then there is the killer quote:

Jon Poling, says Shoffner, has been “muddying the waters” with some of his comments. “There is no precedent for that type of thinking and no data for that type of thinking,” Shoffner says.

He’s absolutely right of course.

Jon Poling is in severe danger of becoming the new Andrew Wakefield. If I was going to be presumptuous enough to offer him advice I would urge him to take a step back and consider what he is doing. It is clear that he and his wife have been flirting with the vaccine hypotheses for a number of years. And now already his co-authors are disagreeing with him.

Mitochondria, autism and thimerosal

18 Apr

The whole mitochondria/autism thing is pretty fascinating. A Dr Shoffner presented the results of a study he conducted (‘Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology‘ – its free registration at Medscape to read the whole thing) in which he noted:

a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

The numbers kind of leap out at you don’t they?

Except, we need to remember that this is a heavily skewed population. As SL has pointed out:

I can’t state it enough: this is NOT a random sample of autistic individuals. These are children who were already suspected of having a mitochondrial disorder.

Which is a bit like looking for wet kids at a swimming pool. It doesn’t really tell us anything about autism aetiology. It tells us that some kids who are autistic also have mitochondrial dysfunction. Reading anything concrete into that is just like reading anything concrete into the fact that autism symptoms become clear around the time vaccines are administered – correlation does not equal causation after all.

Dr Shoffner is unavailable right now but I have dropped an email off with him asking if he would be kind enough to make his presentation available. We’ll see.

In the meantime it should be noted that there are other highly respected mitochondrial researchers who are not pleased with the way that Dr’s Poling and Shoffner have conducted themselves. A researcher I am talking with commented:

….more harm than good has been done this time by Shoffner’s and Poling’s whipping up controversy but not providing the hard data that everyone needs….. Therefore, again, I ask that you serve the public good by not trying to ferret out partial data and incomplete statements from me or others, trust that nothing is being hidden by anyone, and wait for the full story to appear in a medical journal……offer assurance to your readers that the true story will be told and that misstatements of the legions of the uninformed and conspiracy mongers who are pursuing their own selfish aims will ultimately be revealed.

Strong words from someone who clearly feels that Shoffner and Poling are doing what they’re doing solely to be controversial.

So that seems to be the state of research regarding a mitochondrial aetiology for autism. Patchy and sensationalist with a clear agenda to serve personal interests.

However, as we all know, there are a group of people who want to take the autism/mito thing one step further and blame vaccines for triggering an occluded mitochondrial dysfunction which in turn causes autism. Its like a minor league domino effect with only three domino’s. Again, it reminds me very much of the early days of the thiomersal/MMR hypotheses – look for a direct cause and when one can’t be found, look for an indirect one and twist, twist, twist until you can argue for one.

Our old friend Ginger Taylor has, for example, been hopping from online newspaper to online newspaper saying in their comments section that:

The debate is over. Our highest health authorities have stated that vaccines are a cause of autism.

When in fact no such statement exists. Ginger is arguing that ‘features of autism’ is the same as a diagnosis of autism. Back in the real world of autism diagnostics, that is not the case.

So – what can we do to examine the hypothesis that thimerosal triggers mitochondrial dysfunction which in turn triggers autism? We could search for papers that mention thimerosal and mitochondria. When we do we get:

1: Yel L, Brown LE, Su K, Gollapudi S, Gupta S.
Thimerosal induces neuronal cell apoptosis by causing cytochrome c and apoptosis-inducing factor release from mitochondria.
Int J Mol Med. 2005 Dec;16(6):971-7.
PMID: 16273274 [PubMed – indexed for MEDLINE]

2: Humphrey ML, Cole MP, Pendergrass JC, Kiningham KK.
Mitochondrial mediated thimerosal-induced apoptosis in a human neuroblastoma cell line (SK-N-SH).
Neurotoxicology. 2005 Jun;26(3):407-16.
PMID: 15869795 [PubMed – indexed for MEDLINE]

3: Makani S, Gollapudi S, Yel L, Chiplunkar S, Gupta S.
Biochemical and molecular basis of thimerosal-induced apoptosis in T cells: a major role of mitochondrial pathway.
Genes Immun. 2002 Aug;3(5):270-8.
PMID: 12140745 [PubMed – indexed for MEDLINE]

4: Collin HB, Carroll N.
In vivo effects of thimerosal on the rabbit corneal endothelium: an ultrastructural study.
Am J Optom Physiol Opt. 1987 Feb;64(2):123-30.
PMID: 3826286 [PubMed – indexed for MEDLINE]

5: Collin HB.
Ultrastructural changes to corneal stromal cells due to ophthalmic preservatives.
Acta Ophthalmol (Copenh). 1986 Feb;64(1):72-8.
PMID: 3083641 [PubMed – indexed for MEDLINE]

6: Van Horn DL, Edelhauser HF, Prodanovich G, Eiferman R, Pederson HF.
Effect of the ophthalmic preservative thimerosal on rabbit and human corneal endothelium.
Invest Ophthalmol Vis Sci. 1977 Apr;16(4):273-80.

Of these, studies 4, 5 and 6 are not relevant – they’re talking about eyes. Its studies 1, 2 and 3 on this list that are articulatory relevant to us in our search for papers touching on vaccines>mito>autism. If anyone else finds any, please let me know in the comments section.

Now, these three studies are not supportive of the vaccines>mito connection. Why? They use frankly massive concentrations of thiomersal, way beyond whats contained in a vaccine. A quote from a scientist about these studies:

all of the studies used “non-physiological” concentrations of thimerosal – concentrations that would not be reached even by giving three or four (or even ten or twenty) high-thimerosal-containing vaccines to a low-weight and/or premature infant.

You can kill mitochondria with glutamate (an amino acid found in chicken soup, among other things), salt, oxygen, and a number of other things, if you use ENOUGH of it. The studies are not relevant…..because the concentrations used are so high – by a factor of at least 100.

So we seem to be back to square one. Whilst the evidence for a mitochondrial aetiology for autism is of mixed provenance and yet seems probable at some level, the evidence for thiomersal and autism-related mitochondrial dysfunction is not good.

Vaccines = bad, vitamin supplements = good

17 Apr

A fascinating mini-storm has been quietly bubbling away in the UK over the last couple of months concerning the vitamin and mineral supplement industry. It has a tie in to autism these days as one of the features of the more extreme forms of biomed is an increase – sometime to megadose levels – of vitamin and mineral supplements.

Here’s a video from BBC News yesterday. And if you can’t get the video, here’s the online report.

A review of 67 studies found “no convincing evidence” that antioxidant supplements cut the risk of dying.

Scientists at Copenhagen University said vitamins A and E could interfere with the body’s natural defences.

“Even more, beta-carotene, vitamin A, and vitamin E seem to increase mortality,” according to the review by the respected Cochrane Collaboration.

The report reported a neutral finding for Vitamin C but it already established that mega-doses of Vitamin C:

….can cause nausea, diarrhea, kidney stones and inflammation of the stomach lining (gastritis).

These vitamins and minerals are routinely recommended by extreme biomed practitioners for autistic children. There is no scientific evidence of any kind that they do anything to alleviate any autistic symptoms.

I blogged yesterday about a paper called ‘Trusting blindly can be the biggest risk of all’: organised resistance to childhood vaccination in the UK which whilst fascinating in its own right, makes mention of attitudes towards vaccines as risks ‘of the unknown’.

The Vaccine Critical groups rely heavily on a discourse of unknowns in order to challenge and undermine the rationality of vaccination. For example, a majority of the groups make the argument that we do not know the effects of vaccination because of insufficient safety trials, both pre- and post-licence.

And yet, these same groups are more than happy to ply themselves and their children with supplements that have also had little to no safety trials.

There is a huge cognitive dissonance at work here that is worth a sociological study in its own right. Why is it OK to administer some things with no trials and not others? Another idea that anti-vaccine groups tend to espouse is the idea that because ‘we’re all different’ we need to tailor what we’re given to us individually.

We’ve got to actually make sure that what we’re giving is right for the individual child. The Department of Health are not good at determining whether a child shouldn’t have something. They treat them all as exactly the same (JABS).

And yet, once again, we seem to have non-individualised plans (such as the so called Yasko diet, or the GFCF diet or the recommendation to take huge doses of mineral supplements) when it comes to biomed. Why is it OK for one set of treatments and not others?

I think there is more going on here than the authors of the ‘Trusting blindly…’ paper realise. I genuinely believe that for some people it really is a pathological hatred of vaccines . There is no rhyme or reason for it but I’m sure it is there.

An Open Letter To The Poling’s

12 Apr

Dear Poling family,

Let me first start by saying that your little girl is beautiful. I am father to two girls (as well as one boy, young man now actually) so I know how great it is to have such wonderful little people around.

I read Jon Poling’s commentary in the AJC and I have to say that I was very disappointed by the level of accuracy in the piece. For example, he says:

On Nov. 9, 2007, HHS medical experts conceded through the Department of Justice that Hannah’s autism was triggered by nine childhood vaccinations administered when she was 19 months of age…

Now I have taken a keen interest in your families case since it became clear what the situation was. I _think_ I have read most of the newspaper reports available online as well as (more importantly) the HHS document itself and (even more importantly) the case study co-authored by Andrew Zimmerman and Jon Poling.

Nowhere, I repeat, nowhere, have I seen anyone from either the HHS, CDC, US Government, or even the Zimmerman/Poling case study say that ‘Hannah’s autism was triggered by nine childhood vaccinations’.

I have seen David Kirby refer to this several times. I have heard lots of people refer to these statements as if they are true and now I hear you doing it too.

But where is this concession?

In what legal, scientific or medical document does it state unequivocally that ‘Hannah’s autism was triggered by nine childhood vaccinations’?

You are a family on the cusp of storm. You need to take more care with your statements. People all over the world are listening. The *fact* as of right now is that no one has conceded ‘Hannah’s autism was triggered by nine childhood vaccinations’. Simply stating it as if it were true does not make it true.

The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah’s records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

Now this confuses me on two levels. Firstly, Special Masters have already said that:

….in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

It sounds to me like Dr Poling is trying to turn something around onto the HHS without justification. Maybe your legal team haven’t told you about this news. I understand they’re very busy of late.

The second part of Dr Poling’s statement that confuses me is the allusion to the records being released ‘to those representing the almost 5, 000 other autistic children’.

I thought that you wanted your documents to be made entirely public? Are you now saying you only want the legal teams of the other omnibus lawyers to have access to them?

I would also like to draw your attention to the email I sent to Terry Poling on March 5th asking why the Poling family had not cleared Dr Andrew Zimmerman from speaking publicly about the case. Does the Poling fmaily have any intention of lifting that embargo any time soon?

Dr Poling goes on:

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as “rare.” In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

This is very disingenuous Dr Poling. I am not sure if you are purposefully distorting the truth or simply not as knowledgeable as you think. In point of fact the figure of 7.2% is from a 2005 study ‘Mitochondrial dysfunction in autism spectrum disorders: a population-based study‘. This is _not_ (as you state) ‘the only population-based study of its kind’. It was in fact a precursor to a _second_ follow up study by the same lead researcher correcting his own data.

This second study (published October 2007) is called ‘Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical characterization, and medical conditions’.

This study declares a 4.1% figure. It is disingenuous in the extreme to refer to old science when newer, more accurate science exists on the subject (and by the same author no less!).

Further, as far as I can tell, the figure of 20% has but one source – a non published summary for attendees of a 2003 LADDERS conference in Boston, USA. Therefore it has not been subject to any kind of peer review. That’s not to say the figure is wrong, merely that it hasn’t been verified or undergone any kind of the usual scientific checks and balances a published piece of work must undertake to ensure quality. This is not ’emerging science’ Dr Poling. Its a set of program notes.

Further, as I understand it from talking to people involved in all three of these different items, the percentages you talk about are expressed percentages _of regressive autism only_ . Now I might have that wrong but I’m pretty sure that’s what was communicated to me.

Taking this into account, when Dr Poling states that:

In fact, mitochondrial dysfunction may be the most common medical condition associated with autism..

and he goes on to suggest population numbers between 10,000 (1%) , 72,000 (7.2%) and 200,000 (20%) of the autistic population he estimates at one million in the US, he is incorrect.

However, if I have understood what is said to me then we need to look at regressive autism numbers only, which are estimated to account for 25%-30% of autistic people. Therefore we are looking at not 7.2% or 20% (one is incorrect, one is not scientifically justified) of one million. We are actually looking at 4.1% (the only scientifically valid number) of between 25 – 30% of one million. Lets take the upper figure of 30%. This gives us a population of 300,000 for regressive autism. Applying the 4.1% estimate we can see that – at best and only if this data is all correct – mitochondrial autism may affect about 13,000 autistic people – 1.3%. If we took the lower range of 25% for regressive autism, we barely get over 1% (10,250).

Secondly, it should be noted that approximately 40% of autism can be accounted for genetically. This already makes it the single largest established cause(s).

Dr Poling goes on to say:

Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker.

This is true. However, prefacing this sentence with the word ‘today’ gives the highly misleading impression that autism has been associated with mitochondrial disorders and/or dysfunctions only since Hannah Poling came into out collective conciousness. This is far from the case. I can find instances in the scientific literature going back to 1986, over 20 years ago discussing mitochondria and autism and a PubMed search for ‘mitochondrial autism’ yields 34 quality papers published over a 20 year period. This is hardly a new thing Dr Poling.

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

I fear that this is projection. You are very close to pushing an anti-vaccine agenda Dr Poling and indeed Terry Poling was active an the Yahoo Group ‘Recovered Kids’ from at least Summer 2001 where she says things like:

Really, the only way to obliterate a disease is to vaccinate everybody – or at least so “they” say

Sept 2001.

Had I told the hospital staff she was autistic they would not have believed me. The same held true for a (sic) educational consultant who came to evaluate hannah the day before the fever started. She said in her report she saw absolutely no autistic behaviors.

Nov 2001.

She has mitochondrial disease which causes her autism.

March 2004.

I do know docs that speak for drug companies but they cover all the meds for a particular disease in their talks with other docs. If they do not agree that the drug is best for certain conditions on the whole they say so.

Feb 2003.

…it [autism] is a DSM set of symptoms. When the symptoms disappear you cannot say the child still has autism…..

Oct 2001.

So Dr Poling when you try to lay the blame for vaccine preventable injuries increasing at the foot of those agencies assigned to try and stop them reappearing I think that is farcical. To me it is clear that the main responsibility lies with those who shun what are by and large safe safe vaccines on the strength of a hypothesis that is nowhere _close_ to scientific truth. I urge you to read this article and the comments left by readers. Its clear who they see as responsible. For example:

Don’t want to vaccinate your kids? Fine with me. Just don’t send them to school where they then put my kids at risk because of your decision.

You are deluding yourself if you think you can turn responsibility for shunning vaccines back on health agencies Dr Poling.

All in all Dr and nurse Poling I think that your public use of misinformation and erroneous science to make your point will serve you no good in the long run. I also continue to be puzzled by your refusal to ‘ungag’ Andrew Zimmerman. I hope you can start to realise that what has ‘happened’ to Hannah is far from remarkable. Best wishes from one autism parent to another.

Autism and diagnostic substitution

11 Apr

As we all know, one of the planks underpinning the platform of the vaccine/autism hypotheses is the idea of an autism epidemic. This ‘supporting idea’ says that there was a sudden, massive increase in the amount of people with autism. This is as opposed to a sudden massive increase in the amount of people _diagnosed_ as autistic, or even more accurately, a sudden, massive increase in the amount of people _eligible_ to be diagnosed.

This was all in and around 1992 when two things happened. The first thing is that the vaccine schedule was altered. The second thing is that the DSM was altered, widening the criteria and allowing in many more people to collect an autism diagnosis then pre-1992.

The first idea – that there was a de facto increase in the amount of people with autism – is the one favoured by those who think autism is caused by/triggered by vaccines. Personally, I feel that numbers two and three have more validity. But the anti-vaccine people need to have an epidemic in order for the vaccine hypotheses to hold water. No epidemic = no sharp rise = no need for an obscure hypothesis to account for it.

However, as Professor Grinker points out in Unstrange Minds:

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

Unstrange Minds, Page 4

Five big pieces of the awareness puzzle started to come into play. Another one (and yes, I’m stretching this a bit) is what’s called the ‘Rainman‘ phenomenon. This refers to the first real emergence of autism in popular media which purportedly led to many more people becoming aware of autism within their own communities.

As part of Unstrange Minds, Grinker went to Korea and looked at the autism experience there. This is part of what he found:

When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.

Its my opinion that this sort of thing was not too uncommon in the not-too-distant-past of the West. I know from my own experience that offering services for some forms of mental illness are protested against by residents close to the proposed services in the UK. People fear what they don’t understand.

In the case of autism, I think we in the West are past Korea’s point. We are very much more accepting of autism as an existing state and thus people are more prepared to see it and more people _do_ see it. Would you have wanted to take your autistic child out for a walk to the shops if you lived in Korea in the mid-90s? No, me neither. In this country in 2008 I do so with no worries at all.

But believing these things are accurate and having evidence to support that belief are two different things.

Professor Dorothy Bishop of Oxford University led a team to study:

whether some children who previously had other diagnoses are now being diagnosed with autism. We applied contemporary autism diagnostic criteria to adults with a history of developmental language disorder, to discover whether diagnostic substitution has taken place.

The results were eyebrow-raising. In total, 12 (31%) of the participants would’ve been diagnosed as being on the spectrum, of which 8 (21%) would have been diagnosed with ‘classic’ autism.

Bishop et al are quick to point out that:

….it would be rash to conclude that increasing prevalence of autism is entirely explicable in terms of broadening diagnostic criteria

which is very true but it also an inescapable conclusion that, in the words of some of the anti-vaccine believers, these kids were ‘missed’. Or as Bishop et al put it:

….this study provides direct evidence of diagnostic substitution, indicating that many children who were diagnosed with severe language disorders in the 1980s and 1990s displayed behaviours that would be regarded as meriting a diagnosis of ASD according to contemporary criteria. This appears to be a direct result of changing diagnostic criteria from DSM-III through DSM-IIIR and DSM-IV.

One aspect of the study has already caused it to be ignored by the anti-vaccine believers. The fact that Professor Bishop is a Wellcome Research Fellow. I wanted to talk to her about this and find out what that meant. She replied that:

The Wellcome Trust is not involved with manufacture of pharmaceuticals – that’s a common misperception….

And she attached a brief commentary on the subject that is produced by the Trust.

We do not make pharmaceuticals.

The Wellcome Trust is frequently and erroneously thought to be a drugs company, or to have been the charitable arm of a drugs company.

The confusion stems from the fact that from 1936 the label ‘Wellcome’ was shared by two entities, both founded by the same man:

1) the Wellcome pharmaceutical company (confusingly known as the Wellcome Foundation Limited in the UK)
2) the Wellcome Trust.

The Wellcome Trust (the charity) was established by the will of Henry Wellcome to be the sole shareholder of the pharmaceutical company, and to use the profits for charitable aims. Until 1986, the Wellcome Trust was the sole owner of the pharmaceutical company, which generated all of the charity’s income.

In 1986, the first of two share sales created a public limited company, Wellcome plc, which owned the Wellcome pharmaceutical company. The second sale took place in 1992, reducing the Wellcome Trust’s shareholding to around 25 per cent of Wellcome plc. Further asset diversification resulted from the 1995 merger of Wellcome plc with Glaxo plc, creating Glaxo Wellcome plc, which subsequently merged with SmithKline Beecham plc to create GlaxoSmithKline plc.

The Wellcome Trust maintains a small stake in GlaxoSmithKline, as part of a broad portfolio of investments that includes equities, property and other forms of corporate investment. It has always made all of its funding decisions completely independently of the pharmaceutical company.

Professor Bishop is the first to point out the limitations of this study – its small sample size. But this is, as she states, direct evidence of diagnostic substitution and, should the percentages be mirrored elsewhere, somewhere between 20% – 30% of the ‘epidemic’ could in fact be attributed to diagnostic substitution.

The Next Big Autism Bomb?

28 Mar

Over on the Huffington Post, David Kirby has posted about The Next Big Autism Bomb. Its a very long post so take a sammich.

The gist (with apologies to Mr Kirby) of it is that there was a conference call to discuss the autism/mito issues:

On Tuesday, March 11, a conference call was held between vaccine safety officials at the US Centers for Disease Control and Prevention, several leading experts in vaccine safety research, and executives from America’s Health Insurance Plans, (the HMO trade association) to discuss childhood mitochondrial dysfunction and its potential link to autism and vaccines.

The purpose of the call was:

“We need to find out if there is credible evidence, theoretically, to support the idea that childhood mitochondrial dysfunction might regress into autism,” one of the callers reportedly told participants.

To that end, Mr Kirby mentions four studies throughout the rest of his piece. Three are accessible but the fourth is a total mystery. This is unfortunate as it is this fourth one which the majority of his blog post relies upon for its conclusions.

The first three are discussing what the prevalence of mito _within_ autism might be. Kirby states:

CDC officials were made aware of a Portuguese study, published last October, which reported that 7.2% of children with autism had confirmed mitochondrial disorders. The authors also noted that, “a diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders.”

There is a slight point of confusion to clear up here. The figure of 7.2% is from a 2005 study ‘Mitochondrial dysfunction in autism spectrum disorders: a population-based study‘.

The study (by the same author) that Kirby mentions as being published last October is ‘Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical
characterization, and medical conditions‘ declares a 4.1% figure.

The reason for this is that the lead author re-examined his data from the 2005 study and adjusted it downwards in the 2007 study. So Kirby is not correct to state that the authors believe that the rate is 7.2%. The latest figure from these authors is 4.1%.

The third study that discusses prevalence is referenced by Kirby as:

They also know that some reports estimate the rate of mitochondrial dysfunction in autism to be 20% or more. And the rate among children with the regressive sub-type of autism is likely higher still.

Kirby links to a web page that is the web interface to a mail list.

Upon searching for this paper I couldn’t find it anywhere. It is not in PubMed or Google Scholar and in fact I can only find three references to it online at all.

It since transpires that this paper is not in fact a paper at all and has not been published anywhere. It is in fact a summary for attendees of a 2003 LADDERS conference in Boston, USA. Therefore it has not been subject to any kind of peer review. That’s not to say the figure is wrong, merely that it hasn’t been verified or undergone any kind of the usual scientific checks and balances a published piece of work must undertake to ensure quality.

Its also been explained to me that the percentage of “mitochondrial autism” reported by any group will vary with the percentage of regressive autism in their ASD population. So it is not true that the summary states a differential between autism and regressive autism. Rather that “mitochondrial autism” exists _within_ regressive autism.

And so we move on to the fourth study.

One doctor reported his findings from a five-year study of children with autism, who also showed clinical markers for impaired cellular energy, due to mild dysfunction of their mitochondria.

The biochemistry of 30 children was studied intensively, and in each case, the results showed the same abnormalities as those found in Hannah Poling, participants said. Each child had moderate elevations or imbalances in the exact same amino acids and liver enzymes as Hannah Poling.

All thirty children also displayed normal, healthy development until about 18-24 months of age, when they quickly regressed into clinically diagnosed autism (and not merely “features of autism”), following some type of unusual trigger, or stress, placed on their immune system.

……….

But what causes the stress? That is a very big question.

Apparently, in only two of the 30 cases, or 6%, could the regression be traced directly and temporally to immunizations, and one of them was Hannah Poling. In the other cases, there was reportedly some type of documented, fever-inducing viral infection that occurred within seven days of the onset of brain injury symptoms.

Mr Kirby makes this study the raison d’etre of the rest of his post.

I have some major concerns about this. Who is this doctor? What is this study? Where is it published? Where can we _read for ourselves_ what this study says? Without wishing to question the honesty with which Mr Kirby is posting, its obvious that – even in this post as I discuss above – errors and misinterpretations have crept in.

Lets be honest here. These are some *major* claims being made. Firstly that all 30 kids in the study regressed into clinically diagnosed autism as opposed to features of autism. All 30? That’s incredible.

Secondly that 6% of the regressions into clinically diagnosed autism are traced directly from immunisations. That’s big. That is about as big as it gets. I would really like to see this study.

I have asked (twice) in the comments section of Mr Kirby’s post to be pointed to this study. So far, no answer has been forthcoming from anybody.

However. I note that Mr Kirby states that one of the 6% is Hannah Poling. If this is so then it is not true to say that:

the…[autistic]…regression…[can]… be traced directly and temporally to immunizations

(insertions mine for clarity).

As I’ve discussed before, none of the listed symptoms attributed to immunisations can accumulate to a diagnosis of autism. So unless we can actually see this study, know who the author, see what checks and balances this paper has undergone, we’re in a bit of a limbo.

Maternal antibodies involved in aetiology of autism(s)

26 Mar

A new study released by John Hopkins indicates that maternal antibodies may play a role in the aetiology of autism:

[a]…possible explanation involves the transfer of reactive antibodies from the mother through the placenta to the fetus.

To investigate the latter, the team measured the antibody-brain reaction in blood samples from 100 mothers with and 100 mothers without a child diagnosed with autism.

Mothers of children with autism had a stronger reactivity or more areas of reactivity between antibodies and brain proteins compared with mothers without an autistic child. The presence of maternal antibodies also correlated with having a child with developmental regression, a primary feature of autism.

Things to note. No one, repeat no one is assigning _blame_ to mothers. I have no doubt there will be an attempt in some quarters to twist this into an attack on the sainthood of autism parents but its really not. Biology is biology. C’est la vie. Nobody in this study had the last name Bettlehiem.

Its a fascinating hypothesis though. Along with the latest cutting edge science that has found a genetic basis in approximately 40% of autism this hypothesis utilises good ideas in a rigorously scientific way. Of course, it may well turn out to be wildly wrong, but its a nice change to see some science that’s not about cure or vaccines but just interesting in and of itself.

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