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Professor Simon Baron-Cohen Speaks

22 Apr

Professor Simon Baron-Cohen of Cambridge University’s autism research team wrote a piece for New Scientist recently about media distortion:

WHEN media reports state that scientist X of Y university has discovered that A is linked to B, we ought to be able to trust them. Sadly, as many researchers know, we can’t.

He talks about the Observer debacle of 2007 and how that paper made a total hash of leaked data. At the time Baron-Cohen said:

The draft report, he says, “is as accurate as jottings in a notebook”

The big furore was that the paper was working on prevalence rates and mentioned a few rates of autism from 1 in 58 to 1 in 200. Guess which one the Observer decided was the more newsworthy? Baron-Cohen again:

Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers.

So it was really a total non-story. Some scientists were working on a paper about prevalence and had some unadjusted figures. At that point, someone in the team decided to leak the unadjusted report to the press who swallowed it hook, line and sinker.

Fast forward to last month and the Daily Mail runs a story:

Researchers now believe as many as one in 60 children has some form of the condition.

Up and down the blogosphere at the more credulous blogs and news pages the 1 in 60 figure is touted about. Indeed, only yesterday on the Age of Autism John Stone was claiming Baron-Cohen’s silence about the Daily mail article in his New Scientist piece as proof definite that the 1 in 60 figure was accurate:

The most significant thing about Simon Baron-Cohen’s recent New Scientist grouse about media irresponsibility and science (HERE) was that he did not mention the publication just a few days earlier in the Daily Mail of his latest – if long delayed – figure for the prevalence of autism in the UK school population of 1 in 60….

Given the importance of this figure – a true rate 66% higher than formerly acknowledged – the long term reticence of Baron-Cohen and the study’s sponsor Autism Speaks UK is dismaying – indeed Science Media Centre and Autism Speaks UK were still apparently trying to deny it to the Mail ahead of publication of the article.* But the silence of all these parties, and most particularly of Baron-Cohen after the Daily Mail article came out suggests that they did not have a leg to stand on.

When John Stone speaks with certainty in his voice, that is a certain clue that something is not as it seems. So I decided to email Professor Baron-Cohen to get his take on the Daily Mail. After a chat about what it meant he obliged me with an exclusive quote:

The Daily Mail was irresponsible in reporting on the results of our study before it was published in a scientific, peer-reviewed journal and where the details of the study are publicly available for scrutiny. The study will be published in the British Journal of Psychiatry on June 1st 2009.

My own opinion based on the discussion we had and that quote is that the paper might not be quite what it appears from the abstract posted at IMFAR. At any rate Professor Baron-Cohen is right that the Daily Mail have – just like the Observer – acted very irresponsibly. So are those that are reporting a UK prevalence of 1 in 60. Irresponsible and very previous.

Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

Who carries the authority?

19 Feb

The recent Omnibus decisions are hoped by some to stem the tide of rabid anti-vaccine beliefs espoused by people who shame the name of autism advocacy. On Salon, Rahul K. Parikh says:

In the case of autism, science and reason have too often failed to reach people. And consequently they have turned to the courts. For those of us who believe in the scientific method, the autism trials have not been necessary. But judges, unlike doctors in their cold white coats, still command a great deal of respect, and so perhaps the court’s recent ruling will sink in and finally persuade parents to regain their confidence in vaccines.

Never happen Rahul, never happen. These same anti-vaxxers have already began spin campaigns not only against the legality of the verdicts but against the three Special Masters themselves. To this group, the Special Masters command no respect whatsoever and neither do their verdicts. Take this piece of rampant stupidity from Barbara Loe Fisher:

The U.S. Court of Claims special masters are hampered from considering evidence which has not yet been published in the medical literature regarding potential associations between vaccines and the development of regressive autism

I don’t see how it is possible to make a dumber statement. What she’s saying is she wanted the Special Masters to look at unpublished science. As is well known, unpublished science is not like an unpublished novel. Unpublished science means its science that has not been put through the rigour of peer review, not had its methods examined to ensure they are transparent and reproducable, not had its conclusions reviewd to see iof they are accurate and not had its data examined to see if it is usable. This unreviewed, unpublished ‘science’ is what got us to this stage in the first place. A ten year multi-million pound, dollar and euro effort to close down bad science.

So how does she and people like her get away with saying such things? *Just because they can* . Because people believe extremes and people believe celebrities. People believe bloggers and people believe those who have shared (or think they have) experiences. I’m not saying its right but its true. If anyone genuinely believes this ruling will shut the door on these people they’re wrong. For confirmation of that you need look no further than Rolf Hazlehurt, father of one of the kids who made up the three test cases from the Autism Omnibus.

If we win, we keep going.
If we lose, we keep going.
If we win, the going will be easier.
If we lose, the going will be more difficult.
However, the Court rules, we will keep going.

You have to understand. This is not about scientific truth – or even truth at all – to these people. Its about winning and its about pushing their antivaccine beliefs as fast and far as they can. Even as they claim to not be anti-vaccine they write emails to others clearly showing they are. One of these emails will come to light very soon I believe. Expect to see very familiar names on it.

To these people science has no authority. Doctors have no authority. The Special Masters have no authority. The only people who have authority – real authority – can probably be counted on the fingers of one hand. David Kirby. Jenny McCarthy. Maybe Dan Olmsted. If one of these people were to bow to the obvious and say so publicly then we might have a very different scenario. But they won’t. They have too much invested in esposuing the anti-vaccine line.

Mainstream media have a lot to apologise for also. The red tops, the broadsheets and all those hundreds of little bitty TV channels all over the US that gave the anti-vaxxers airtime in the name of impartiality and allowed them to scare away facts and reason, they need to reverse that policy.

But more than that, scientists and doctors need to get online and blog, get on Twitter and use them. Talk to people in their own language. Screw decorum. Ask people who’ve been using their blogs to support vaccines for _years_ what to do and how to do it. People like Oracand Ben Goldacre are prime examples.

This needs to happen because we’ve already lost one generation of kids to their loony parents. The loony parents who only recognise the authority of celebs, authors and each other in nests of email lists and blogs. If we want to give up another generation to the reach of the internet then keep on keeping on and hope that Rahul K. Parikh is right. But he’s not.

Kirby blows another irony meter

11 Feb

I need to find a source for militaryp-spec irony meters.

David Kirby has posted a piece on the Brian Deer investigation of Dr. Andrew Wakefield.

Here’s the comment that blew the irony meter:

Imagine if a US journalist sued a doctor for libel or misconduct, and then went to the NY Times and asked to be hired as a freelancer to cover the trial that they themselves had instigated in the first place. It wouldn’t happen.

So, David, you wrote “Evidence of Harm”, massively fanning the flames of the mercury causation theory.

You are now blogging on the Age of Autism blog.

Are you paid for that effort?

I haven’t seen a lot of non-vaccine/autism bylines for you in the past few years. So, if AoA is paying you, it would be a sizable fraction of your “journalist” salary.

If so, couldn’t it be well argued that you created your own “journalist” job?

Ironic, eh?

Ah well…as long as we are discussing Mr. Kirby, here is another of his comments:

In his writing, Deer claimed that Wakefield had made up results about severe MMR reactions in the children just days after receiving the shots, had ignored signs of autism in some kids before they received their MMR vaccine, and changed lab reports on the gut biopsies – among other alleged infractions that have been covered in the two year trial in London of Wakefield et al.

The accusations printed in the Sunday Times are, frankly, outlandish. And they are false.

Hmmm, false? Do you have the facts to back that up? Have you seen the medical records that Mr. Deer has reported on? It seems highly unlikely to this observer.

Let’s look at some of Mr. Deer’s claims:

Supposedly, Dr. Wakefield found measles RNA in the guts of his subjects. From Mr. Deer’s report, the father of child 11 from the Lancet study has stated that he had no fewer than 3 separate tests for measles RNA from the same gut biopsies that Wakefield tested. Three negative results.

Dr. Wakefield claimed that the children were developing normally before the MMR. According to the Deer article, another child from the original 12’s story:

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism.

Dr. Wakefield claimed that the 12 study subjects were presented sequentially to his hospital, indicating that they were randomly selected. And, yet, none of them were in the Royal Free Hospital’s catchment area–or even the greater London area. That’s one fact that doesn’t take access to the GMC’s records. And it demonstrates a clear non-random nature to the subject choice.

How about the report by Dr. Wakefield that the subjects had regressions shortly after their MMR shot? Again, from Mr. Deer’s article:

This was Child Two, an eight-year-old boy from Peter-borough, Cambridgeshire, diagnosed with regressive autism, which, according to the Lancet paper, started “two weeks” after his jab.

However, this child’s medical records, backed by numerous specialist assessments, said his problems began three to five months later.

A pretty major disconnect between Dr. Wakefield’s story and the medical records.

How about the measles-in-the-gut theory? Dr. Chadwick, working in Dr. Wakefield’s own hospital, testified in the Omnibus proceeding that he told Dr. Wakefield pre-publication that the PCR data directly contradicted the results Dr. Wakefield was publishing. Dr. Wakefield knew when he published that there were good data that showed he was incorrect. How did you sweep that under the rug, Mr. Kirby?

Did Dr. Wakefield fabricate results or is there another reason why he got a lot of very important facts wrong? I don’t know, but I do agree with Dr. Fitzpatrick who asked why Dr. Wakefield’s papers have not been retracted. They should be.

(And I thought Dierdre Imus wrote the worst blog post of the day!)

post-publication note: Dr. Mike Fitzpatrick has written an excellent article on Dr. Wakefield’s studies, including the recent information from Mr. Deer.

Fitzpatrick on the recent Wakefield news

11 Feb

Dr. Michael Fitzpatrick has written the article I wish I could have done–

The MMR scare: from foolishness to fraud?

For anyone looking to understand the timeline and the important questions raised by the Brian Deer investigations, this is a must read.

Dr. Fitzpatrick asks a very important question one must consider–if there is such a big disconnect between what the Wakefield papers report and the actual histories of the children (and the disconnects seem to be very significant), shouldn’t the journals print retractions?

Following Brian Deer’s 2004 revelations about Dr Wakefield’s conflicts of interest arising from undisclosed legal aid funding, 10 of his Lancet co-authors retracted the suggestion of a link between MMR and autism (while upholding the paper’s claim to have identified a distinctive form of bowel inflammation in autistic children). It is now clear that, given the selection bias confirmed by Deer – quite apart from his other allegations – it is not possible to make such a claim on the basis of the Lancet cases. Surely it is now time for the authors to withdraw this paper in its entirety? Perhaps the editor of the Lancet – together with those of the other journals involved – could submit Deer’s allegations to some sort of tribunal, perhaps arranged by the Medical Research Council. For 10 years the world of science has witnessed Dr Wakefield’s foolishness; now it has to ask: has he crossed the line into fraud?

Another good source on the Wakefield studies is in Paul Offit’s book “Autism’s False Prophets“.

You may recall that someone has YouTube’d Autism’s False Prophets. Yes, Story Time with Darwin. If you have problems reading or just want to listen in to the sections on Dr. Wakefield, give “Story Time” a try.

There are a LOT of blogs discussing this. I Speak of Dreams is keeping a running list.

Picking a couple–Respectful Insolence has Why am I not surprised? It looks as though Andrew Wakefield probably falsified his data.

Bad Astronomy has Did the founder of the antivax movement fake autism-vaccine link?

It is worth noting that Dr. Wakefield published a statement of his own as In his desperation, Deer gets it wrong once again.

Dr. Wakefield is in a strange position, since the GMC hearings are still ongoing to determine whether his methods warrant disciplinary action. That said, Dr. Wakefield’s statement responds to a letter that Brian Deer sent prior to publication. It is unclear if this response was sent to Mr. Deer before publication, or if any response was made pre-publication. That said, I wonder why Dr. Wakefield didn’t respond to the specific information from the children’s records which contradicts the story presented in Dr. Wakefield’s papers. What Dr. Wakefield does do is offload responsibility to others–other authors and the parents.

The reporting of the children in the Lancet paper is an accurate account of the clinical histories as reported to Professor Walker-Smith and his clinical colleagues.

One comment that has been made to a blog is worth paraphrasing here. Dr. Wakefield comments in his response:

Finally, I did not “create” a scare but rather, I responded to a scare that parents brought to my attention.

Perhaps Dr. Wakefield didn’t “create” a scare. But, what he did was throw gasoline on a lit match. To stand back and claim no responsibility for burning down the house is quite disingenuous.

Wakefield

10 Feb

The name alone conjures up strong images for many in the autism communities. If you think vaccines cause autism, he is a hero. For many others, he has brought shame to the greater autism community.

In addition, I know many who think that Andrew Wakefield’s time has come and gone and we should just ignore him now. To those, I apologize, but the recent information is just too important to ignore.

Kev would be able to show the annoyance that Dr. Wakefield’s research has caused many of us in the autism community. It would be a better read than this–a post written by someone who finds the entire affair sad. Too much harm has been caused by what even before today was already pretty obviously bad science. It’s just a sad story that has just gotten sadder.

For those who may not know, Dr. Andrew Wakefield was the lead author on the papers which attempted to link autism to the MMR vaccine. The story is so long and tortuous that it is difficult to know what to include and what to leave out. You know what, if you don’t already know the story–count yourself lucky and skip this post! How’s that for an introduction?

Brian Deer took a closer look than most (all?) journalists at Dr. Wakefield’s story. He exposed the fact that Dr. Wakefield’s patients were litigants claiming MMR caused autism. He also exposed the fact that Dr. Wakefield and some on his team were well paid for their efforts.

It is very likely that Mr. Deer’s investigation is what prompted the General Medical Council (GMC) to investigate Dr. Wakefield’s actions in this research. As part of that investigation, the GMC has collected medical histories of the subjects of Dr. Wakefield’s study. And, Brian Deer has had access to these data, and they don’t match what was presented by Dr. Wakefield’s team.

Before we look at what was said in the papers and what the medical histories actually indicated, let’s look at the introduction from the original Lancet paper:

We saw several children who, after a period of apparent normality, lost acquired skills, including communication. They all had gastrointestinal symptoms, including abdominal pain, diarrhoea, and bloating and, in some cases, food intolerance. We describe the clinical findings, and gastrointestinal features of these children.

Compare that to what’s here’s Brian Deer’s article, MMR doctor Andrew Wakefield fixed data on autism.

Ouch.

Here’s a more thorough article, again by Mr. Deer:

Hidden records show MMR truth
A Sunday Times investigation has found that altered data was behind the decade-long scare over vaccination

As a short sidetrack, Mr. Deer isn’t the only one suggesting that there were problems with the Wakefield studies.

Wakefield claimed (in a separate paper from the original Lancet article) that his team found evidence of persistent measles virus in gut biopsies from the autistic children he saw. In the Omnibus hearing, a member of Wakefield’s team told the story of how the data which clearly disagreed with Wakefield’s conclusions was ignored.

Or, to put it another way, Dr. Chadwick [note correction] told Dr. Wakefield that he (Bustin) had data which directly contradicted the results Wakefield was going to publish. This should have quashed the paper, and, yet, not mention is even made of it by Wakefield et al.

But, back to the Brian Deer report.

Let’s look at a few examples from Mr. Deer’s story. There were 12 children in the original study. Mr. Deer refers to them as child 1 through child 12. Mr. Deer looks at them individually..

Child 11 had a “positive” test for measles RNA by Wakefield’s team. The father had 3–yes 3!–other labs test the same biopsy samples. Result? No sign of measles.

Here’s a bit about child one from Mr. Deer’s story:

In the paper this claim would be adopted, with Wakefield and his team reporting that Child One’s parents said “behavioural symptoms” started “one week” after he received the MMR.

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism.

It’s very tempting to quote example after example, but I’ll just end up copying the entire story. I encourage you to read the story, there are numerous examples of how many of the 12 subjects of Wakefield’s study were not previously normal.

Rather than pick all the examples of discrepancies about development of Wakefield’s subjects, how about the second part of the question: did these kids all show GI problems? Again, there are numerous examples in Mr. Deer’s story. Here’s an excerpt.

The most striking change of opinion came in the case of Child Three, a six-year-old from Huyton, Merseyside. He was reported in the journal to be suffering from regressive autism and bowel disease: specifically “acute and chronic nonspecific colitis”. The boy’s hospital discharge summary, however, said there was nothing untoward in his biopsy.

A Royal Free consultant pathologist questioned a draft text of the paper. “I was somewhat concerned with the use of the word ‘colitis’,” Susan Davies, a co-author, told the ongoing GMC inquiry into the ethics of how the children were treated, in September 2007.

“I was concerned that what we had seen in these children was relatively minor.”

Not only are there problems in the reported information and the records, one of the co-authors is indicating that the paper overplayed the data they had.

Sorry, but this all just makes me more sad. Sometimes bad science can be, well a little funny. Sometimes just annoying. This is just really sad.

“A Sunday Times investigation has found that altered data was behind the decade-long scare over vaccination”

What more can be said?

(note: I edited this shortly after publishing it. The substance was not changed)

The Great Autism Rip-off

1 Jun

I had to pinch myself to check I was actually awake and not dreaming when this landed in my inbox this morning.

This is a truly excellent piece of journalism on autism and the growing CAM (Complimentary and Alternative Medicine) industry (Small Pharma?) that surrounds it. And its in the Daily Mail.

I can imagine many people choking on their cornflakes this morning. A little JAB of reality.

In this burgeoning market, private doctors and clinics have sprung up across the UK claiming they can treat or even ‘reverse’ the disorder.

Recent research published in the Journal Of Developmental And Behavioural Paediatrics found that a third of parents of autistic children have tried unproven ‘alternative’ treatments.

Worryingly, the study claims one in ten has used what the experts class as ‘a potentially harmful approach’.

I’d personally say the figures were a little lower than that now. As MMR fear in the UK has tapered off, parents turning to CAM has (I think) dropped off. One only has to take a look at the slackening number of posters on the various anti-vaccine pro-CAM autism websites such as JABS to see this in action.

Parent to four autistic children, Jacqui Jackson explained how many of us try something silly before coming to our senses:

‘I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn’t work.

‘Autism is seen by some people as big business.

‘I meet parents who want a cure and spend money in the hope they’ll have a normal child. I try to warn them that there is no evidence any of these things work, but they’ll often go ahead.’

I hold my hands up and admit we tried a bit of quackery – fad diets and even homeopathy (its all on this blog somewhere) – because we didn’t know any better basically.

In his exposé the Mail reporter claimed to have an autistic child so he could ask some CAM autism practitioners over here what to try:

During my investigation, I was recommended expensive tests, vitamin supplements and special diets, ointments, suppositories and injections to ‘flush out toxic heavy metals’, bizarre-sounding high-pressure oxygen chambers and intravenous infusions of hormones – and told in each case that they could bring about a complete recovery from autism.

Yet medical experts say there is no evidence to support their claims, and in fact many of the treatments I was offered were potentially harmful, and even possibly fatal.

The experience left me disturbed at the lack of regulation surrounding these practices.

Its nice to hear someone from the mainstream media stating what some of us have been stating for the last few years!

The report mentioned how:

This week, new legislation aimed at protecting consumers from ‘rogue traders’ came into force, prohibiting businesses from making ‘false claims’ that a product is able to cure illness.

Its about time. Hopefully, some of these CAM artists will be investigated under the auspices of this new law.

The reporter went to see a few DAN! registered UK docs. The experience wasn’t pretty. One made outlandish claims for Secretin but didn’t ask for any medical records. One pushed chelation and never mentioned Tariq Nadama. Another said the reporter would have to commit to a year of rubbing in a skin cream chelator of dubiouis eficacy. Dr Lorene Amet failed to disclose that she wasn’t actually a doctor of medicine (its not uncommon for DAN! ‘doctors’ to not actually be doctors).

Its a highly revealing piece of a grubby, grasping little world that preys on the parents of autistic people. Thanks are due to the Mail for reporting on this so accurately and thoroughly.