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Frustration

20 Apr

One of the most frustrating things about blogging the unfolding vaccine>mitochondria>autism hypothesis is that a lot of the doctors who are experts in the field of mitochondria don’t want to publicly comment. A lot of them feel quite rightly that there is a certain element who are not the most balanced of individuals and they don’t really want to expose themselves to these people. That I can definitely empathise with.

However it does, as one of them has admitted themselves, leave the field wide open to (and I quote directly from one of these doctors):

….legions of mountebanks eager to pad their retirement funds at the expense of desperate parents…

So when a very well respected mitochondria researcher says the following all I can do is post it and not attribute it and hope that it can be read and believed. Of course, the fact it appears on this blog will no doubt cause some to dismiss it entirely but I would urge them not to do so. Please remember that kids with mitochondrial issues are a whole new ball game. Talking their parents out of vaccinating them could very well kill them.

…..I do not know of any evidence connecting mercury and mitochondrial disease. There is no evidence connecting vaccination with mitochondrial diseases: certainly vaccinations do not cause mitochondrial diseases. Whether they may act as transient stressors, like intercurrent URIs do, remains to be determined. Clearly, energy-challenged children with mitochondrial diseases need to be protected from potentially deadly infections through vaccination.

Please don’t vaccinate

18 Apr

After all, whats the death of a baby from a vaccine preventable illness huh?

The baby was 9 months old, his birth weight was 8 lbs 5 ounces. At six months he weighed just shy of 20 pounds. Today he weighed 15 pounds – he was a skeleton and he was dying.

Mom had brought him in after treatment by his naturopath had failed. Constant coughing had made it impossible for him to take in adequate nutrition and starvation, coupled with a raging bacterial pneumonia were conspiring to shortly end his very short life.

We worked feverishly. Intubation, IV boluses, major antibiotics, vasopressors. All futile.

At 9:03 pm, after 30 minutes of cardiopulmonary resuscitation we pronounced him dead.

This boy had pertussis. His mother choose not to vaccinate him. I won’t enter that debate. Anyone who has ever watched a child die or become permanently disabled from a preventable illness supports vaccination.

A naturopath a mother who elected not to vaccinate and decreasing herd immunity – what could go wrong there? Lets hope there’s no other people as *fucking stupid* as to go around blathering about not vaccinating, using naturopaths instead of doctors and insinuating that vaccine preventable diseases are nothing and vastly preferable to something like…oh I dunno….autism for example.

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.

Wakefield Admits Fabrication

17 Apr

Here:

The doctor whose study triggered a collapse in public confidence in the combined measles, mumps, and rubella (MMR) vaccine told a disciplinary panel last week that he made up details of his son’s birthday party—at which he took blood samples from several children—when giving a speech in California.

……

Last week the GMC panel saw video footage of a speech Dr Wakefield gave in 1999 at a meeting of parents of autistic children called by the Mind Institute of the University of California, Davis, where he jokingly described children fainting and vomiting after giving blood.

“Two children fainted, one threw up over his mother,” he told his laughing audience in the clip. “People said to me, you can’t do that— children won’t come back to your birthday parties. I said we live in a market economy; next year they’ll want £10.”

But Dr Wakefield told the GMC panel that he had made up these details to amuse his listeners. “It was the end of a long and rather exacting talk for the parents, and it was an attempt to introduce a little bit of levity,” he said. “It was a quip, just a story. The way these stories are told, if the audience responds you tend to respond back.
So the story was told. But it had no bearing on the truth at all.”

“Clearly, if it has caused any distress then I am extremely sorry for that,” said Dr Wakefield. “That wasn’t my intention.” He added that he had been “naive” to think he could take the samples without the permission of an ethics committee.

So – the first confirmation from Wakefield himself what a lot of us suspected – Wakefield makes stuff up.

Why? What possible reason could he have for making up such a thing? Is it to make himself the centre of attention? To become the darling raconteur? God knows that some Americans think that Brits are all witty mini Oscar Wilde’s (I am living proof we’re not). Did he feel obliged to play up to that image?

Or is he lying now to escape censure for what he actually _did_ do?

Who can know? Its all getting a bit tacky.

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.

Anti-vaccination and autism

16 Apr

I need to reproduce this comment from Amy Tuteur, MD on Autism News Beat. Its perfect.

“How does Dr. Tuteur explain parents who fully vaccinated and trusted the vaccination policy and then became disenchanted with it only after seeing their children seriously injured?”

Disenchantment is not the standard. The scientific evidence is the standard. It is not as though this hasn’t been studied. The purported link between vaccines and autism has been studied extensively and repeatedly. The scientific evidence indicates no difference in the incidence of autism between those who are vaccinated and those who are not. There is also no difference in the incidence of autism between those who received vaccines containing thimerosal and those who did not.

We’ve looked and the link simply isn’t there. That’s not surprising when you consider that the classic descriptions of the onset of autism, elucidated long before the use of multiple vaccines, is exactly the same as the onset of autism today. Vaccines do not increase the incidence of autism. Thimerosal does not increase the incidence of autism. The natural history of autism has not changed since the introduction of vaccines. It cannot be any clearer than that.

The conspiracy theories are a bunch of baloney. In order for there to be a conspiracy, someone must be hiding information. Doctors are vaccinating their children. Vaccine manufacturers are vaccinating their children. Immunologists are vaccinating their children. Who, precisely, is conspiring to keep information from the public and are we really supposed to believe that they would sacrifice their own children just to preserve the conspiracy?

Moreover, it isn’t as though doctors, immunologist and vaccine manufacturers are denying that vaccines have risks. It is well known that vaccines can and will cause small numbers of deaths and cases of brain damage. We have set up a compensation system precisely because we know about and acknowledge these risks. If doctors, immunologists and vaccine manufacturers are forthcoming about the risk of DEATH, isn’t it a bit absurd to suggest that they would hide the risk of autism?

One thing is certain, vaccine rejectionists do not understand immunology. Immunology is extremely complicated, so it’s not surprising that many people don’t understand it. However, the fact that they don’t understand it tells us nothing about immunology or vaccines, just like the fact that most people do not understand Einstein’s theories of general and special relativity tell us nothing about whether they are true.

Autism is a very serious problem. To the extent that we waste time, money, attention and effort on something that is not causing autism, we are diverting time, money, attention and effort from finding the real cause for autism. That is the saddest aspect of this incredibly sad situation.

I also recently read ‘Trusting blindly can be the biggest risk of all’: organised resistance to childhood vaccination in the UK which has some fascinating things to say on the anti-vaccine movement and their history. Consider this:

There is a small but fascinating social history literature which looks at the birth of resistance during this period in the form of groups like the Leicester Anti-Vaccination League and critical publications like the Vaccination Inquirer . Several of the accounts demonstrate the successes of organised campaigns which inspired marches of up to 100,000 people, riots, public burning of effigies of Edward Jenner, and the celebration of martyrs (Beck 1960, Porter and Porter 1988, Durbach 2000)…..Other accounts of this period stress the impressive ability of the anti-vaccinators to harness the power of the press (Howard 2003) and the important role of key individuals in pushing forward the movement.

Sounds familiar huh?

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.

A little something for Autism Awareness Month

10 Apr

 The invitation for the birthday party arrived a couple of weeks before the date. I use the couple of days before the party to try and explain things to Tom. We watch  an episode of Something Special where Tom gets a refresher course on birthday cakes and Happy Birthday and Bullet gets a refresher course on ensuring that if you are going to watch a dvd to death, don’t pick a beloved one that can only be got via mail order. I ask Tom what his friend likes to play with . He pauses and then announces.

 “W bread and Tom bread!”

  I am tempted to buy a loaf of Warburtons, but decide it probably wouldn’t go down well as a good present for a five year old.

  After rejecting musical instruments (too noisy), baby toys (too patronising perhaps), drawing things (what if he has motor difficulties) and playdough I opt for a set of toy kitchen scales. Upon getting home and trying to wrap it I realise it wasn’t the greatest idea to pick something that is almost impossible to cover with ease. The difficulties involved in the logistics of this are solved by passing it to my husband to sort out. I am secretly gratified when he returns it to me with a small tear at the top, “because it wouldn’t wrap well.”

 We arrive at the village hall where the party is about ten minutes before it was due to start, thanks to traffic being worse than we anticipated. I kiss Jacob goodbye, asking his dad to take him somewhere nice whilst the party is going on and I then walk with Tom into the room. He is very quiet and stands stock still, not moving. The mother of the birthday lad steps forward to greet us.

 “Tom” I say and sign “say “hello”

 He looks towards the fire extinguisher (I will be compelled to read the instructions and manufacturing information on this extinguisher later) and addresses an “ErHeh” to that. The mother smiles at him. Then there is a flurry of movement and a small lad comes racing up.

 “Oh!” he announces happily. “Here is Tom! I been waiting for Tom and now he’s here!”

 Tom appears to ignore him. I ask him to say “hello” to the lad and get no response. I point out the balloons (much loved by Tom) and step back.

 Five minutes later he has picked up a balloon and is running round following the birthday lad, the pair of them giggling and racing round the room. There is no conversation, no set games, just two little boys who like each other and want to run as fast as they can. When Musical Bumps is announced Tom sees this as another opportunity to run round and likes that part so much he keeps running long after the music has stopped and all the other children have sat down.

 A few days later we are in town. As we walk up the street Tom pulls in one direction.

“A go a number 20!” he announces. This is what he calls the shopping centre. “A number 4!”

 “Ok” I tell him “We shall go to the shopping centre. We shall go in the lift.”

 He is quiet for a minute and then announces.

 “A balloon! A W candle a Tom balloon!”

 The party, it seems, was a great success.

Doing the right thing

9 Apr

David Kirby and Dan Olmsted that is. Kudos to them. See Orac’s blog for details.

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