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  These figures had been hanging around unpublished 2004.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(the Sunday sister newspaper to the Guardian) which reported that Baron-Cohen had detected a 1 in 58 autism rate in an unpublished study.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?

xxxxxxxxxxxxxx

*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)
Cheers
Fiona

Hi again!
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.
Hilary

John Stone, based in London, is a Contributing Editor to Age of Autism.

 

Comments

[David Greer/with Aspergers]

Thanks Michael And gatorra / mark & cliff

ONE WORD I CAN SAY that sums up all of our comments are about. Is What my suport person
Gave me two day That Word

WAS - ''Eugenics'''
Look it up on/in the encyclopedia.
I had too!
And thanks for veary bright peopel with comments you gies have brains and respect..

[David Greer/with Aspergers]

My suport person seid Im
Geting respect from this (web blog)
Thanks for the Respect....
Not alould to talk about the Aids pamdemic and Red Cross!
or holly cost (spelling funny) this sight might be cloased down like two others had been. I don't want that to happen to this one .I dont understand Emotion sorry!
If I do just rember Im olny giving you stuff From an Autistic prospective Not disciplines to think one way to how- open my mind to subjects.Do know About
cure for Controlling the Population this is called Bio-warfear even that
skips generation past on to woman Then moves in to other parts of the wourld .
Look at/// oh sorry..But Dr Gabriel Stewart, a specialist in chelation therapy for adults, who tells me he tries to dissuade parents from giving their autistic children intravenous infusions ‘not because it’s dangerous, but because it isn’t effective in clearing mercury from the blood’. Consequently, Archie was not suitable for treatment I will just say I had low zink in my daite and was heigh in mecury ..And did not speek till I was 7..And I think the Autism Dna skipy in 5 to 9 Depending on ratio of men an woman maybe peopel are living in parts that sartistics can't reach!.Aspergers syndrome individuals in jobs that involve architecture or design. Not only is their visual learning superior but their learning memory is more intact than other ways of remembering things. Aspergers individuals can create elaborate visual images of things as complex as computer programs and musical pieces and then can fill in the rest of their knowledge around that like I will (EX)What city has the heights air polution oh its the city with more houses -in 1986 ther was a new rule clean flow fires olny in the new city that ruel was applyed was the biggest!!.you prolby dont under stand me sience or the way I explaine ..I did an air study at 10 and still to day thinks the science peopel got it wrong . Do you think this is wrong!I do go by Most autistics, in fact, do not want to be cured because they've already accepted autism as part of their personality, identity and lifestyle
The wourld smarters person has An IQ of 260 + HE is Autistic just rember That..
from David rs greer / Aspergers love you peopel...

[Alison Davis]

John, regarding your response to "Michael"-
Here is some useful information about the Department of Education autism numbers(used in the "1 in 67" article).

As early as January 2008: The CDC has conceded that DOE figures may have been under estimated

How many children with ASDs are being served through public special education programs?
In 2006, 224,594 children ages 6-21 and 35,111 children ages 3-5 were served under the “autism” classification for special education services[2]. Not all children with an ASD receive special education services under the classification of “autism,” so the education data underestimate the actual prevalence of ASDs. For more information about children served through public education programs, go to the IDEA data website.

http://www.cdc.gov/ncbddd/autism/faq_prevalence.htm

[Alison Davis]

Thank you, John, for continuing to highlight and publicly ask questions to which our children deserve answers.

[John Stone]

Michael

The US CDC figure 1 in 150 is way out of date.

https://sites.google.com/site/angelawarnerproject/Home/when-1-in-150-is-really-1-in-67

Presently, the UK schedule has 24 vaccines not even by 2 but by 13 months, and in places like Hackney and SE London which had target campaign infants may have had a second dose of MMR by 14 months bringing the total up to 27.

http://www.immunisation.nhs.uk/Immunisation_Schedule

But that is not admittedly the cohort under discussion. These would mostly have had DPT, Polio, Hib three times over by 4 months, MMR at 13-15 months - later ones Meningitis C as well. There are significant anomalies as well. Use of single vaccines in the 90s would have led to much greater mercury exposure for some infants, and also NHS record keeping was so chaotic that many infants got duplicate doses of vaccines.

Overall I believe we are better in the UK at doing the schedule on schedule, whereas many US parents delay and spread it out, so their children meet educational admission criteria but are not necessarily so bombarded in the early months.

As to Fiona Fox, the question is - given her science media influence - how credible is she? Once she denied the Rwandan massacre, now she has tried tried to sit on our catastrophic autism figures. Has she been just as gullible the second time around?

Michael, how about we do studies comparing autism rates, other neurological disorders, allergies and diabetes in vaccinated and unvaccinated populations, and see what we find out?

[David Greer/with Aspergers]

I see ther is Friction About the MMR thing!David rs Greer with asperges wrights /I'm sad to say!!!
Its starting to Choke up the
Autism Blog sights!>
Many will cling to there Belief Nevethless I know of two peopel who have been paid out from a leanthy cort battel,Becoues of heigh zink levels /in the X6 and how it skips generation and the ratio between mail s and woman brains. Is that interp info extrap info or worked out on sheets of paper?
I do know I ignore what the scientist have to say!. I have done more reading than any of you gies thats becoues I have ASD !
The main point of studies with this how bigger there memory and IQ was .I gess the Goverment just would like smarter peopel!
just not socail ones ..Sound like minoriity of girls are smarter than boys at teen age hood have you generalised that with your sartistics ! I gess your mind blind dont take that comment hardly im just been autistic and direct!hans aspergers is my hero!you gies let me in to this blog we are freinds...

[Clifford G Miller]

"Who needs conspiracy theories when you have proof like this. Nothing "theory" about it.

And Autism Speaks UK were involved in funding Baron Cohen's study, which explains their connection.

They must have had the 1 in 58 figure from long back, [and presumably also drafts of the paper and what has been submitted for the long delayed publication]. And here they are trying to kill the long delayed publication of the figures the day the Daily Mail was going to press with it, just like Fiona Fox did with The Observer in 2007.

You can all make your own minds up about that. With friends like that ....... who can you trust?

It will be interesting to see what is eventually published. Will it have a sentence added to a preamble which does not feature anywhere in the paper like that of the 2005 Cochrane MMR safety review? 'No credible evidence of an involvement of MMR with either autism or Crohn's disease was found. Or will something be done with a little more subtlety

Epidemiology only finds 'associations', not "involvements", so whoever added that sentence to the preamble of the Cochrane MMR review does not look like one of the authors."

[mark h]

Simon's theory boils down to "you mom looks like a man"
science at its best

[Michael]

So let me get this straight. You're admitting that despite the fact that the UK vaccine schedule for kids has over a dozen fewer vaccines than in the U.S. (24 in the U.S. to 11 in the UK by the age of 2), the rate of autism there is greater than in the U.S. (1 in 150 in the U.S.) and yet you're calling that a victory for your position that the greater number of vaccines leads to the greater rate of autism. Come again?

And I have a question. What exactly is "a former denier of the Rwandan holocaust" anyway? Isn't that the same thing as a believer in the Rwandan holocaust?

Oh, one more thing. What does one's beliefs about the Rwandan holocaust have to do with vaccines or autism? Thanks.

[Gatogorra]

We had no internet for most of the day and I knew I was missing something. Excellent report.

Is Simon Baron-Cohen withholding public announcement of the 1/58 figure because

A) The numbers are still going up?

B) He hasn't yet concocted another strange genetic theory of rising prevalence which could account for such a steep hike yet?

C) Someone in power doesn't like the number?

D) All of the above?

Hilary Gilfoy's email is oddly cheerful as she tinkers over the precise rate for the extinction of the species.

I'm pretty stunned by all of this.