A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

Media Response to the Observer and Autism

The Observer’s recent scare story on autism has at least two good points.

1. They have taken such a beating that it is unlikely that they will publish another PR story for Wakefield for a long time to come.
2. I have discovered a lot of interesting blogs which support rational discourse and look forward to reading them on a regular basis.

Then there are the bad points. Most of the press ran with the story without questioning its veracity. Very few have picked up on the faults in the Observer story. This is the best I could find when doing a google news search on the terms Observer and Autism.

Press Round Up on the Observer, Wakefield, MMR and Autism

The Observer’s 8 July front page, featuring the claim of a one-in-58 risk of autism from the MMR jab, has prompted its sister paper, ‘The Guardian’, to run a meticulous debunking of the story in its Bad Science column. Its author, Goldacre, suggests the media that peddle such untruths should be “in the dock, alongside [Dr Andrew] Wakefield”. Despite the kicking, morale remains high at ‘The Observer’. Many of its own journalists thought the story deserved a good trashing.

The Independent July 22nd 2007

Whatever you think about Andrew Wakefield, the real villains of the MMR scandal are the media. Just one week before his GMC hearing, yet another factless “MMR causes autism” news story appeared: and even though it ran on the front page of our very own Observer, I am dismantling it on this page. We’re all grown-ups around here.

[…]

Nothing has changed, and this scare will never be allowed to die. If we had the right regulatory structures, almost every section of the media would be in the dock, alongside Wakefield.

Dr Ben Goldacre in The Guardian July 18 2007

New fears over big surge in autism’; ‘I told the truth all along, says doctor at the heart of autism row’. Headlines in last week’s Observer (8 July) provide a media boost for Dr Andrew Wakefield as he faces charges of professional misconduct at the UK General Medical Council (GMC) over the conduct of the research that first suggested a link between the MMR vaccine and autism in 1998.  [read on]

Dr Michael Fitzpatrick in Spiked Online July 17th 2007

What the Blogs say about the Observer and Autism

These are the most recent blogs (last seven days) courtesy of Google that add something new to the debate. Lots of others either linked to or repeated Ben Goldacre’s excellent rebuttals in his badscience blog or to Mike Fitzpatrick’s equally trenchant piece in Spiked Online.

A couple of weeks ago The Observer (UK ‘quality’ Sunday paper) printed an article claiming an as yet unpublished study shows a dramatic rise in the prevalence of autism. They also managed to crowbar in the MMR vaccine as well just to raise the general levels of hysteria. [ read on ]

This Sunday The Observer nearly apologizes for its disgraceful front page report on Autism a fortnight ago. But they still don’t get it. [ read on ] I wrote this one 🙂

The Observer deserves sackcloth and ashes for its autism, MMR coverage. The British Medical Journal (BMJ) embarrassed itself by uncritically reproducing that 1 in 58 figure but at least it had the good grace to take a piece by Dr Ben Goldacre that criticised the media coverage of this issue. [ read on ]

It’s one thing to get a story wrong. Everyone does that – I’ve certainly done a couple of howlers in my time. It’s quite another to, on being informed of your howler, try and cover it up. And, it appears, this is exactly what The Observer is doing after it’s truly appaling MMR/autism front story from last weekend. [ read on ]

This article and its subsequent coverage in the other press has set back public understanding of this subject by several years and unreasonably made the public question science even more, ironically when it is proper science that is the only way to truth in this, rather than the mumbo-jumbo “science” practised by Wakefield. [ read on ]

The main issue is that the Observer misinterpreted the results of this unpublished research. The paper claimed the research showed an increase in the prevalence of autism. Based on this misinterpretation it then blamed the supposed increase on the MMR vaccination, saying that two of the seven authors of the report privately thought the MMR jab might be partly to blame for the alleged rise in autism. [read on ]

Last week I blogged about the, now infamous, MMR  piece by Dennis Campbell in the Observer. Campbell’s piece contained this.

“the MMR jab which babies receive at 12 to 15 months, might be partly to blame. Dr. Fiona Scott and Dr. Carol Stott both say it could be a factor in small numbers of children.”

Dr Scott subsequently e-mailed Ben Goldacre. The e-mail contained the serious allegation that some of the stuff in the Observer piece had been “fabricated”. [read on]

A short break from your usual Patrick Holford coverage – courtesy of some more awful mainstream media MMR reporting. It was disappointing to see the Observer running such god-awful autism/MMR stories, but to see the BMJ pick up the Observer’s inaccurate figures (the claim that 1 in 58 children is on the autistic spectrum) is even more disturbing. [read on ]

In the aftermath of the Observer debacle, one of those described in the original piece as being an MMR believer responded in the comment thread of The Guardian readers editor page. Her words are very telling and show, once more, what a shoddy and deliberately misleading piece of work this was. [ read on ]

Speaking of Bad Science and bad reporting and how the two seem to go together so frequently, Ben Goldacre goes after The Observer big time in yesterday’s Bad Science column. The Observer, of course, continued to do its bit on behalf of scientific illiteracy with scare story on 9 July over yet another purported link between the MMR vaccine and the apparent rise in autism in the UK [read on ]

 I’m annoyed with the Observer. I had a nice Holford Watch post mostly written – looking at some particularly odd claims for vitamin C – and was planning on spending the rest of the day relaxing with a newspaper. Then I saw the Observer’s truly dismal (2nd) attempt at an apology for their terrible MMR/Autistic Spectrum Disorder (ASD) coverage. Now I can’t buy myself an Observer, and feel obliged to insert a break in your usual Patrick Holford coverage to write another post on the Observer. [ read on ]

Most significant of all is Fiona Fox’s contribution. Fiona Fox is director of the Science Media Centre and according to her blog, after sending a note to Denis Campbell warning him that she could not defend his piece to angry scientists.

The result was an invitation to meet with him, the readers’ editor and a variety of other Observer news editors at their offices. So, with two leading MMR experts at my side, I went to highlight the concerns.

According to their website

The Science Media Centre is first and foremost a press office for science when science hits the headlines. We provide journalists with what they need in the form and time-frame they need it when science is in the news – whether this be accurate information, a scientist to interview or a feature article.

If you read Fiona Fox’s blog she makes quite plain the help and advice that the SMC offered to the Observer in the aftermath of their diasterous front page story. Judging by their continued weaseling in today’s edition, The Observer is still clinging to the wreckage of its original story despite the advice of the SMC.

As an added irony, when I looked up who funds the SMC  I found the Associated Press (Daily Mail, Mail on Sunday, Evening Standard) DailyExpress, Trinity Mirror (Daily Mirror, Sunday Mirror, Daily Record, the People etc.) and News International (Times, Sunday Times, Sun) all represented. In fact, apart from the Telegraph and the Independent, nearly every national newspaper in the UK supports the SMC except the owners of the Guardian and the Observer.

There has been a lot of discussion recently about how bloggers cannot meet the standards  of professional journalists. Judging from this incident I am not sure that I aspire to the standards of journalists like Denis Campbell. I will end with a modest proposal from Brian Deer in the comments section of Kev’s blog.

My suggestion is that people should write to the Observer and suggest that, since there is still so much confusion about the duty of reporters, and what – on this matter of grave public interest, affecting the safety of children – are a newspaper’s reasonable duties to accuracy, the Observer should join with the complaining readers and refer the matter – jointly and with agreement – to the Press Complaints Commission for adjudication.

See what they say to that!

My letter is in the post. I even put a stamp on the envelope.  If I get a response I will let you know next week.

Cry Shame on the Observer and MMR and Autism

Last Sunday the Observer published a really shoddy piece of journalism about the increase in autism and the possible connection with MMR. I fired off a letter to the editor and persuaded some colleagues to add their signatures. Unfortunately I sent it to the Readers editor and not the Letters editor. Therefore my  letter did not get to stand alongside the epistles of Professors Simon Baron-Cohen and Stephen A Bustin. But it did get to feature in the response of the Readers Editor, printed on the same page.

I thought his defence of the story was quite weak and fired of another letter to him. Here is my original letter

Dear Sir, We were surprised to read your headline, “New health fears over big surge in autism” (Sunday July 8, 2007) as we are unaware of any recent studies that would support such a claim.  Our surprise turned to concern when we read the subheading, “Questions over triple jab for children.”  Had the Observer discovered evidence of a dramatic increase in autism linked to the MMR vaccine? That was the clear implication of your headlining this on your front page. It was also misleading in the extreme as there was nothing in the article to justify this impression.

The study that forms the basis of the article is unpublished and therefore unread and unavailable for peer review. That means that nobody apart from the authors has access to the methodology or the data that supports the figure of 1 in 58. You name Fiona Scott as one of the researchers who “privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.” If your reporter had spoken to Dr Scott she would have told him what she told the Daily Telegraph (Monday, July 9 2007), that the study had absolutely nothing to do with MMR or causation. “One of the elements of the research was how different methodologies can affect the result. One of the figures was one in 58. The other figures were lower than that. I absolutely do not think that the rise in autism is related to MMR. My own daughter is getting vaccinated with the MMR jab on July 17.”

The other researcher named in support of the MMR connection is Carol Stott. Carol Stott has left the Cambridge Autism Research Centre to work for Andrew Wakefield, the originator of the MMR scare, at his clinic in Texas. Prior to that, she was an advisor to the legal team seeking compensation for parents who believed that MMR caused their child’s autism. She was paid £100,000 for her services. These details, which were omitted from your report, might have helped your readers to draw their own conclusions about Dr Stott’s private belief “that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.”Dr Scott has also categorically denied your claim that lead researcher, Professor Simon Baron-Cohen, “was so concerned by the one in 58 figure that last year he proposed informing public health officials in the county.”

On closer examination every claim in your story proves to be false. This is bad enough in itself. But the potential impact on public health makes it even worse. There is an overwhelming body of evidence that refutes Dr Wakefield’s claim that the MMR vaccine is responsible for a new and preventable form of autism. Much of it was presented at a recent hearing of the case of Michelle Cedillo before the US Court of Federal Claims. Despite their elevated status in the Observer as “leading experts in their field” neither Dr Scott nor Dr Stott were called as witnesses for the claim that MMR was responsible for Michelle Cedillo’s autistic condition.

MMR vaccination rates are beginning to recover in the UK as scientific evidence mounts to allay the natural, albeit erroneous, fears of parents. These fears have been reinforced by irresponsible media reporting that ignores the overwhelming evidence that MMR is safe and does not contribute to autism. Your article helps to stoke those fears. Finally, it has not escaped our notice that this story coincided with your exclusive interview with Andrew Wakefield, the architect of the whole MMR/autism debacle and the subject of a GMC disciplinary hearing that is due to start next week.  In the interests of balance can we look forward to equally prominent coverage of the views of Wakefield’s critics in next Sunday’s edition?

Simon Pritchard in the Observer

The Observer reported last week on a ‘big surge’ in the number of children in Britain with autism and included the claim that the rise might be linked to the use of the MMR vaccine. This caused an immediate outcry within the scientific and medical community. An unpublished report leaked to the paper showed that the number of children in Britain with autism could be as many as one in 58. The document had been the work of seven academics at Cambridge University, two of whom, the paper said, believed privately that the surprisingly high figure ‘could be linked to the controversial MMR vaccine’.

Our story caused considerable controversy. Some said it would stir up alarm on the eve of the General Medical Council’s disciplinary hearing into the case of Dr Andrew Wakefield, who faces charges relating to his conduct during an MMR research project in the 1990s, and, it was suggested, the two ‘dissenters’ quoted in the piece were not ‘leaders in their field’ as claimed by the paper.

Furthermore, both had received payments for expert evidence offered at a now-abandoned court case against MMR manufacturers and one was currently working for a US clinic associated with Dr Wakefield, who had given an exclusive interview in the same issue of the paper to the same reporter.

Equally serious was the charge from the Science Media Centre that The Observer had conflated two issues: the apparent rise in autism figures and the MMR debate. The leaked document dealt in statistics, but not causes, as the story made clear, and yet the paper had reported the private views of two of its authors, both of whom were experts in autism, but were not vaccinologists.

I put these points to the reporter and to our head of news who began by denying absolutely a further accusation put to me by one correspondent: that there was a deal done to get the story on the front page in return for the exclusive interview.

The head of news said: ‘I believe it was legitimate to include the thoughts of two of the authors of the study. We didn’t conflate the two issues; the issues are already conflated.

‘We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, “Could MMR be a factor?”‘

The document, which is entitled a ‘Final Report’ to the Shirley Foundation, the funding body which paid £300,000 for the research, is dated 15 November 2005 and showed the 1 in 58 figure to be the key headline finding.

The reporter said he knew of the payments made to the academics for the expert report they co-wrote for the court case in 2003.

He maintained that this report bore out what the paper had said: that they both believed that MMR could be a factor in autism emerging in small numbers of children.

He accepted that he should have made that plain in the story, along with the current links to Dr Wakefield. He also agreed that lower, less alarming figures of one in 74 and one in 94 found in the report should also have been in the text.

And the central point, in my view, is that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.

reader@observer.co.uk 

My reply

Dear Sir,

in today’s Observer you responded to criticism of last week’s coverage of autism and MMR by suggesting that, “that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.”

While it may be legitimate for a newspaper to use leaked documents to reveal truths that powerful, vested interests are trying to hide, to apply the same criteria to an unpublished scientific paper is to misunderstand the nature and purpose of academic publication. The authors submit the paper to a suitable academic journal. If it is accepted, the paper’s rationale, methodology and data are all subject to peer review prior to publication. Peer review does not guarantee that the paper is correct. It does indicate that it is a valid piece of research that merits serious discussion. If the subject of the paper is sufficiently newsworthy coverage in the non-specialist press will bring it to the attention of the general public.

This process serves two purposes. It helps to drive science forward by promoting accurate reporting of research and encouraging informed debate within the research community. It also acts to filter out weak or spurious research that might otherwise mislead the public. When scientists choose to circumvent this process and newspapers aid and abet them, both are guilty of subverting the scientific process and potentially creating another unjustified health scare amongst a lay public that will remember the headline long after the details have been forgotten.

As regards accuracy, Professor Baron-Cohen obviously disagrees. See his public statement http://www.admin.cam.ac.uk/news/dp/2007071305 that refers to your report as “inappropriate … premature … alarmist.” Or there is the report in Thursday’s Times http://www.timesonline.co.uk/tol/life_and_style/health/article2060575.ece where the reporter actually spoke to Professor Baron-Cohen before writing the story. Then there his letter, in similar vein in today’s Observer. http://observer.guardian.co.uk/letters/story/0,,2126633,00.html

You claim that it “did not need the introduction of the MMR theory.” The point is that it did revive the connection between MMR and autism. And it is no use to argue, as your news editor did, that, “We didn’t conflate the two issues; the issues are already conflated. ‘We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, “Could MMR be a factor?”” 

Let us be clear. The only people conflating MMR and autism in the minds of the public are the media who continue to publicize the views of a minority of parents and professionals despite the total lack of credible scientific evidence in support of their claim. Your attempt to give a “balanced view” actually lends credence to MMR. Balance implies that both views have equal weight in the scientific community. You should strive for accuracy not balance when reporting on these matters. 

And just how accurate is a report that quotes people without interviewing them; that attributes thoughts and actions to them that are subsequently denied; that, by your reporter’s own admission, omitted facts known to him that should have been made plain in his report? 

And finally, why oh why is today’s letters page headlined, “the big issue: vaccination. Reasons why autism could be on the rise.” Vaccination is only an issue because you make it so. Please stop.