Autism: the 64 billion dollar a year question for Simon Baron-Cohen, Ben Goldacre, Fiona Fox and Autism Speaks UK.
By John Stone
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 (HERE ). These figures had been hanging around unpublished 2004.
Students of these matters may recall the unpleasant events which preceded the commencement the GMC hearing against the Royal Free doctors (HERE) in July 2007. An article authored by Denis Campbell had appeared in the Observer (the Sunday sister newspaper to the Guardian) which reported that Baron-Cohen had detected a 1 in 58 autism rate in an unpublished study. The article also reported that two of the study’s co-authors, Dr Carol Stott and Dr Fiona Scott, remain concerned that figures could have been partly contributed to by MMR (later Dr Scott denied saying this).
The article led to a furore. The head of the industry lobby organisation, Science Media Centre, Fiona Fox (a former denier of the Rwandan holocaust HERE ) led an institutional attack on the article which she herself documented in a blog post ‘Why we need the best journalists on public stories’:
“One of the challenges for the Science Media Centre (SMC) was what to do about it. We were set up in the wake of media furores over issues like MMR and we know that poor journalism on public health is our territory. However we also know that the SMC philosophy (the media will 'do' science better when scientists 'do' media better) was a reaction against the culture of complaint within science which often saw top scientists complaining privately about coverage rather than pro-actively engaging with the story.
“With this in mind, the SMC reacted to the article primarily by coordinating a joint media statement by 14 institutions involved with child health and vaccination to back the safety of the jab which we issued to coincide with the GMC hearing. However I did also send a note to Denis Campbell, the journalist who wrote the article and a friendly contact of ours, to make sure he knew that the SMC was unable to defend the piece to the angry scientists who were contacting us. 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...” (HERE)
Fox’s blog is testament the level of organisation behind the defence of the MMR, but also the language is chilling - as if it was the job of SMC to decide what gets printed, and who gets protected. Another document which can be downloaded from the web is an article by Ellen Raphael which credits SMC and Sense About Science with changing the course of public opinion in the debate over MMR (HERE ), and the early history of these bodies was recalled George Monbiot in his 2003 Guardian article ‘Invasion of the entryists: How did a cultish political network become the public face of the scientific establishment?’ (HERE )
The Campbell article also led to a war at Guardian newspapers, in which Guardian journalist and Institute of Psychiatry doctor Ben Goldacre led the attack on the Observer, which was eventually to contribute to the dismissal of the editor, Roger Alton (HERE ). In his article ‘The MMR story that wasn’t’ (HERE ) Goldacre wrote:
“First, it claimed that the 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." Prof Cohen is clear: this is inaccurate and scaremongering.”
Baron-Cohen, himself, responded to the article in a letter to the Observer (HERE ):
“The research is based on a study of Cambridgeshire children, which ran for five years. It has not yet come out with a definitive figure on the prevalence of autism and it is therefore irresponsible to single out one figure.
“The best estimate of the prevalence of autism is the 1 per cent figure published in the Lancet in 2006.”
Yet, only a few months later, in the relative privacy of an academic conference, Baron-Cohen was to unveil what looks suspiciously like a rounded version of the 1 in 58 figure (HERE ):
“Conclusions: The prevalence estimate of known cases of ASC, using different methods of ascertainment converges around 1%. The ratio of known to unknown cases means that for every three known cases there are another two unknown cases. This has implications for planning diagnostic, social and health services.”
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.
It is a simple observation for those of us who battle for services that those who hold back on such crucial information (and have done so for years on end) are not genuine friends of our children. When I first started to probe these issues back in 2000 I quickly discovered that the projects to deny there was a rise in autism and to deny that there was a connection between vaccine and autism were intimately linked by the UK Department of Health and Medical Research Council. There is a fundamental question, why - if there is no link between public health policy and the rise in autism - are Baron-Cohen, Goldacre and Fox & co so coy about the new figures?
*Fiona Fox forwarded to journalist Sue Reid an email from Hilary Gilfoy CEO of Autism Speaks UK, where she clearly confuses some simple points:-
Hi Sue, Not sure if this is useful but thought it may be...........from Hilary Gilfoy at Autism Speaks (she is CEO there)
I don't know if it helps, but I have been having another look at the abstract and I can't see where the figure of 5:3 for diagnosed:undiagnosed cases comes from in this particular study. If you look at the parent questionnaire based studies, there were 41 known diagnoses out of 3373 returned questionnaires. By following up on the parental reports in the same 3373 questionnaires another 11 cases weregiven a research diagnosis. So the ratio of diagnosed to previously undiagnosed was 41:11 - and not 5:3.
John Stone, based in London, is a Contributing Editor to Age of Autism.