Archive | December, 2008

David Kirby didn't look before he leapt

7 Dec

On Wednesday 3rd December, Ginger Taylor sent an email around to a maillist of journalists she maintains contact with saying:

Last spring I wrote to you and told you to be on the look out for the story of Hannah Poling, who was the first child with autism to be paid from the vaccine injury compensation fund. In the months following the Poling story, we found that she was actually at least the tenth child with autism compensated for her vaccine injuries by the government, but only the first to go public. Her case caused a profound shift in the public recognition of vaccination as one of the causes of autism.

I am writing to you today to let you know that tomorrow another story of equally profound weight will be breaking.

Specifically that the Department of Defense now holds the position that autism is one of the adverse reactions to the DTaP vaccine. In addition, The US Armed Forces Institute of Pathology holds that thimerosal is likely a cause of autism and recommends methyl B12 and chelation as the course of treatment for this mercury exposure

This entry is about the DoD story here but I really can’t let the Hannah Poling reference go by without a few notes. Hannah Poling was _not_ the first child with autism to be paid from the Vaccine Injury fund, a story first broken by Kathleen on her blog. And please note that yes, these kids had autism and yes these kids had vaccinations. And thats it. No link was ever made. This is just the same as the Hannah Poling case where no court or HHS employee has stated that Hannah’s autism was caused by her vaccines despite the numerous claims that they have. if anyone ever tells you they they have, ask for them to provide a link. All these cases are once you get right down to it are dressed up cases of correlation being presented as causation.

Anyway.

Following Ginger’s email, the next day found David’s blog post on the Huffington Post asking if the Pentagon was was a voice of reason on autism and vaccines, by which he means – do they think vaccines cause autism.

During the course of the post, he cited this presentation from José A. Centeno of the U.S. Armed Forces Institute of Pathology and specifically referred to Slide 22 which I urge you to download and look at yourself (its a PDF). The slide is headed ‘Thimerosal’ and discusses sources, health effects and treatment. The health effects section states (in its entirety):

– Exposure to Hg in utero and children may cause mild to severe mental retardation and mild to severe motor coordination impairment;
– Autism?
– Dementia?

to which David asks:

My question is: Why does autism appear on a list of health effects on a slide about thimerosal, even if it is followed by a question mark?

To me its obvious: This PDF was created in 2005. . Some mainstream researchers still thought it was a slight possibility that thiomersal was involved I guess. Its further notable that even Centeno knew it was a doubtful link by the placing of a question mark after the word ‘autism’.

Lets also note that these are bullet points on a slide. I imagined the discussion at the time of presentation revolved around the debunking of the thiomersal hypothesis and it seems that was accurate.

I wondered at the time if David had actually spoken to anyone in the US military about this before passing it on to Ginger as a story of ‘profound weight’ and now, after reading David’s update on the post itself, it seems he didn’t:

UPDATE – I recently received a response to my query from Paul Stone, AFIP Public Affairs. He wrote that: “Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.”

Its unfortunate David decided to ‘publish and be damned’ before waiting for a response from Centeno or the AFIP. Its clear that rather than a story of ‘profound weight’ this is something of a non-event. However, as is usually the case, no matter how incorrect it seems to be (and I am sure that this is _far_ from the last that will be heard about this from bloggers eager to get to the accuracy of this mini debacle) it will be quoted again and again and again from anti-vaccine believers who care little for accuracy. This will have an impact on both the well being of autism research and public health. I really hope David does the right thing and simply apologises and retracts the story.

Can Children with Autism Recover? If So, How?

2 Dec

An interesting new study with that very title found its way into my inbox last month. I’ve taken awhile to blog about it whilst I read, re-read, re-re-read, re-re-re-read it (its 23 pages long – 28 with references) and swapped emails with the lead author and approached an understanding of its implications.

Here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome.

Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s a number of issues that I found interesting about this paper. First was the identities of two of the co-authors – Marcel Kinsbourne (testified for the plaintiffs in the Autism Omnibus) and Martha Herbert (testified that mould causes autism – case lost).

Second was the criteria used to define ‘history of autism’ and also to define ‘current functioning’. Both seemed pretty stringent to me. First ‘history of autism’ (study members were currently aged between 8 – 18 by the way):

By history: (1) The child was diagnosed with an ASD in early childhood (i.e., by age 5) by a specialist (i.e. someone whose practice is at least 50% devoted to autism). (2) There was early language delay (either no words by 18 months or no word combinations by 24 months). (3) Review by one of our team, blind to current group membership, of early reports (age 2–5) and/or videotapes, with diagnostic formulations elided, confirms early ASD.

Second, ‘current functioning’:

By current functioning: (1) The participant does not meet criteria for any Pervasive Developmental Disorder, including PDD-NOS (at least one symptom in social domain plus one additional symptom), which generally means that no social symptom of ASD is present by best clinical judgment. (2) The participant does not meet ASD cutoff on social or communication domain of the Autism Diagnostic Observation Schedule, (3) any special education services the participant receives are to remediate difficulties with attention, organization, or specific academic difficulties and not to address features of autism, (4) the participant is functioning without an individual assistant in a regular education classroom, (5) VIQ, PIQ, and FSIQ are all at 78 or above (1.5 standard deviations below average), (6) Vineland Communication and Socialization Scales are all at 78 or above.

So recovery is indicated by moving from stage 1 to stage 2. I hope others can give their own opinions in the comment section as to how stringent the two criteria are but it seems fairly impressive to me.

So what happened with these kids? How did between 3 – 25% become recovered (by the terms of the study)?

1) Having relativelyhigh intelligence,
2) Having receptive language
3) Displaying verbal and motor imitation
4) Displaying motor developmentbut
5) Earlier age of diagnosis and treatment
6) Having a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified
7) Use of behavioral techniques (there is a section in the paper expressing caution over the veracity of this finding or at least, its my understanding that there is).

Interestingly, overall symptom severity plays no part in recovery and neither does head growth.

The presence of seizures, mental retardation and genetic syndromes are unfavorable signs.

Something else that seems to play no part:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

I was (obviously) particularly interested in this so I asked the author about vaccination status. The reply was:

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that…

Its a fascinating paper, not least to me personally as it indicates once and for all that vaccinated kids can (and do) recover without biomedical interventions, thus indicating the vaccination plays no causative role in autism.

There are no positives to autism

1 Dec

Well you know – except when there are:

As Charlene Sawyer, a bespectacled young woman in jeans and pink Nikes, sings “Danny Boy,” they stand still. They don’t sip their beers or talk among themselves or puff on their cigarettes. They just listen.

Sawyer sings the old Irish ballad like they’ve never heard it before, delivering it in a spine-tingling, operatic style, her specialty.

When she finishes, the crowd fills the bar with applause. Sawyer grins and scoops up her orange notebook of sheet music. She knows she nailed it.

What most of the patrons in the bar don’t know is that Sawyer is autistic.

The Centre for Disabilities this young lady attends describes her as ‘an exceptional talent’. But what is also clear – as the article mentions is that her autism plays more than a passing role in her singing:

Because of her disability, Sawyer will probably never sing in a great performance hall. But if she didn’t have autism, she likely wouldn’t have cultivated her voice to such a degree in the first place. Many high-functioning autistics such as herself nurse obsessions, and Sawyer’s obsession is music.

I’m not so sure this young lady might not ever sing in a ‘great performance hall’. She might have trouble and need help, but I bet she could. What is beyond doubt is the fact that her autism’s insistence of attention to detail and perseverance is what made her voice the beautiful thing it is now.

I’d say from reading the rest of the article that she might have a thing or two to learn about other autistic people but what is beyond doubt that autism has helped make her who she is. Without autism, her gift for singing would’ve been lessened or not be actualised at all.

There are people in this life who will tell you everything about autism is bad, that it contains no positives. Do not trust these people because – as the story Charlene Sawyer shows – they are wrong. Life is never so black and white.

David Kirby on mitochondral autism

1 Dec

Over the last few months David Kirby has been talking about a new paper that would be forthcoming that would postulate a link between autism and vaccines via Mitochondrial disease. He claimed to have some inside knowledge of this due to interviewing one of the co-authors.

That co-author was Richard Kelley and that paper has indeed been published prompting another excited flurry of posts from David on the Huffington Post. I know it was Richard Kelley as I’ve also been conversing with Dr Kelley via email. Following David’s initial post on the subject several months ago, amongst many other things Dr Kelley expressed:

…furor and frustration that we all feel right now is due to the very poor way in which this has been handled by several people each trying to claim an undeserved 15 minutes of fame.

It was easy to tell that here was a man who was immensely angry but was determined not to discuss any results – possible or actual – until they had gone through the rigour of peer review.

A day or so ago David published a post about this new study but I have to say that in my lowly opinion it left quite a lot unsaid and inflated the significance of what it did say.

David made much of key sentences of this paper (Cherry picking) and really the overall importance of it was a bit sidelined. For example, David says:

[This paper tackles]..The widespread misconception that Hannah’s case was “unique,” and without any bearing on other autism cases…

Whereas, the actual paper states:

Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy. For one of our 25 patients, the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.

That one patient was, of course, Hannah Poling. Now, if there was ever ‘widespread misconception’ that mitochondrial autism was real (which I don’t believe there was) then this paper certainly adds weight to the argument that it exists. However, if David is trying to claim that this paper indicates that autism caused by vaccine fuelled mitochondrial disease is not unique to Hannah Poling then I think he has misunderstood or misread it. One out of twenty-five is pretty much the definition of uniqueness.

David then goes on to claim that this study gives weight to the claim that regressive autism is real. As it happens I agree with that. However, it should be placed in its proper context. David states:

Nearly all of the children in my book regressed into autism – a process that often began almost immediately after receiving multiple vaccinations.

Perhaps that is why the very idea of regressive autism has been cause for derision among many scientists, who insist that the parents were simply too ignorant to “notice” autism symptoms in their children earlier on.

That is, with due respect to David, simplistic and not representative of either data, or testimony. During the Autism Omnibus hearings, Professor Sander Greenland gave testimony (for the petitioners it should be noted) that clearly demonstrated that such scientists as Eric Fombonne clearly accept that regression exists and can possibly account for 28% of autism cases. Thats not exactly science being derisive of parents ideas about regression. However, it must be evaluated on a scientific case-by-case basis. As also testified to during the Autism Omnibus proceedings, parents who thought their child (Michelle Cedillo) had regressed were clearly shown to be in error when video evidence demonstrated obvious indicators of autism prior to vaccination.

However, David suggests that ‘nearly all’ the children in his book were regressive following vaccination. As Greenland showed during testimony. At most, this group of ‘clearly regressive autistics’ (autistic people who allegedly regressed following vaccines) could – at most – account for 6% of all ASD cases. If we take the numbers down to the sort of ‘low functioning only’ cases that I have heard many autism/vaccine believers in then we are down to 2% of all autism cases. This translates to approx 11,200 0 – 21 year olds in America. How this number constitutes an autism epidemic I have no idea.

David goes on:

Most of the children in my book – and Hannah Poling as well – had rather severe physical, biomedical problems associated with their regression. Again, this claim has been met with scorn by many in the medical and science communities, who say that autism is much more of a behavioral/neurological than biomedical condition. Parents and doctors who do try to treat these physical symptoms – with conventional and alternative therapies alike – are singled out for particular damnation by many of these so-called experts.

Firstly, I very much doubt that any parent who is treating a childs illness with conventional therapy has been scorned by anyone. There is however, no epidemiology that associates autism per se with the mainly toxicological and/or gastric issues most biomed parents talk about. The paper states:

Twenty-one patients (84%) had histories of major non-neurological medical problems, most commonly of the gastrointestinal system, with gastroesophageal reflux affecting nine and constipation affecting eight subjects.

The other ‘major non-neurological’ were things already associated with autism or other developmental disorders such as Prader Wili.

Lets also note that none of the symptoms listed by David would be treatable by chelation for example.

This study found 64% had GI dysfunction. This is very high and warrants further study, no doubt about that but…what relation has this to vaccines?

The claim that vaccines cause GI dysfunction revolves around the MMR hypothesis – a hypothesis that has taken an absolute battering of late. It has been established in clinical science that the findings of Wakefield et al cannot be replicated and the original findings that indicated a link were based on corrupt data. Of all the various vaccine hypotheses this is by _far_ the weakest.

There is also the fact that the GI Symptoms listed in the study are common amongst a whole range of Mitochondrial diseases and thus its hard to see what particular significance they have to mitochondrial autism.

David goes on:

VACCINES MAY PLAY A ROLE IN AUTISTIC REGRESSION IN SOME CHILDREN WITH MITOCHONDRIAL DYSFUNCTION

“Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy (cellular disorder),” the authors wrote. “For one of our 25 patients [Hannah, who DOES have autism, contrary to claims by Gerberding, Offit et al, who erroneously insisted, without ever meeting the child, that she only had “features” of autism], the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

Maybe not – but one must wonder, then, why medical personnel at HHS’s Vaccine Injury Compensation Program conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”

Inserts are David’s.

Lots of things to cover here. Firstly, David says “VACCINES MAY PLAY A ROLE” whereas the study authors say: “..the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

I think its pretty clear that the study authors are – at best – dubious that vaccines played a role. They are simply saying what the rest of us have always said: correlation does not equal causation.

David once again insists that HHS medical personnel “conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.””

Where?

I asked twice in the comment thread that followed where this HHS document was and if we, the general public, could read for ourselves – and in context – these words. I am not suggesting David is lying at all. However, by his own admission David has been wrong more than once on what were previously firmly held opinions. This is nothing that should be being speculated about. We need to see this document.

Lastly, Gerberding, Offit et al were quite right to use the phrase ‘features of autism’. That is the phrase that both the HHS report and the case study (co-authored Jon Poling) used. Some say it is hair splitting but I don’t believe that saying someone has autism is the same as saying someone has features of autism. I’ve expounded on this before for those interested but suffice it to say I have a similar eye colour to Clive Owen. This doesn’t make me Clive Owen (much to my wife’s disappointment).

David goes on:

When I first reported this story, the researcher I spoke to told me there had been 30 children in the study, and two of them (8%) showed signs of brain injury from vaccines. Of the five children since excluded from the final published review, one must have been the second vaccine-related regression.

I very much think David might have been incorrect about that. I’m reasonably sure that Dr Kelley would not have referred to ‘brain injury from vaccines’. Given that the study he has just put his name to has cast doubt on that idea I don’t think its a valid idea.

There follows a series of what can only be called strawmen- this study didn’t do this, didn’t do that etc. For example:

….we now find out that nine of the children (36%) had so-called “multiple regressions,” and nothing in this review indicates that any attempt was made to determine if vaccines, febrile infections, or some other factors acted as triggers in the subsequent regressive episodes.

But in the sentence immediately before that David says:

Most of the children had regressed following illness-induced fever, the doctor told me.

The answer to the ‘question’ is right there. One regression, two regressions, twelve regressions – the Doctor states that regression followed illness-induced fever. In other words, given that these doctors know what caused the regressions why would it be necessary to look for something else? Something else that the authors have stated fairly clearly they don’t see any evidence for. However, as befits scientists discussing something both fairly new and of large public interest, they are careful:

Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies.

Thats fair enough I think. However I also think its going to be difficult. Sander Greenland made it very clear that detecting the hypothetical ‘clear;y regressive autism’ (i.e. autism caused by vaccines) was going to be next to impossible in large population-based studies, stating the the case amount was so small it would be pretty much undetectable by epidemiology. How to perform the kind of studies necessary to prove/disprove a relationship in such a small amount I have no idea. We’re basically trying to prove that vaccines trigger a mitochondrial cytopathy that leads to autism in – no matter what David thinks – is a pretty small group of people:

28% of people have a regressive form of autism. In 2003 at a LADDERS conference in Boston, Kelley postulated that 20% of regressive autism is due to mitochondrial cytopathies. CDC says that approx 560,000 of autistic people in the US are between 0 – 21. Therefore 28% of 560,000 = 156,800. 20% of 156,000 = 31,360. That’s about 5.6% of autistic children.

Rare? Not sure. Common? Hardly.

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