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Wednesday, June 24, 2009

Autism, the Media, and "1 in 58" - the story continues

It was about this time two years ago that my faith in the British media died. It had never been in the best of health, but up until then I believed that the (non-tabloid) newspapers were written by professionals trying to find out and communicate the truth as best they could.

Journalists might be wrong, I thought, but they did their best to ensure that they weren't. And they might have a bad habit of focussing on sensational stories that "sold papers", but such stories would at least be accurate. A career in journalism was something that strongly appealed to me.

What happened on July 8th 2007 was that The Observer printed a front-page article so demented that I’ve never been able to take that newspaper at face value since. And if you can't trust The Observer, which sat on my family's breakfast table every Sunday since before I can remember, you can't trust any of them (at least, I can’t.)

The article was about autism, and it claimed to be a report on a new research study carried out at Cambridge by the famous Professor Simon-Baron-Cohen. The upshot was that Baron-Cohen’s team had found the rate of autism to be 1 in 58 children, much higher than the previous study from a few years earlier, which found a rate of about 1 in 86. Furthermore, The Observer said, two of the team, “world experts” in autism, thought that this “dramatic rise” (i.e. a rise of 50% in a few years!) might be something to do with the much-maligned MMR vaccine.

The original article no longer exists on the Observer’s website, but the WayBack Machine has it.

It was pulled after Ben Goldacre, amongst many others (including Baron-Cohen and even the Government), criticized the piece vociferously and it was, eventually, replaced by an unsatisfactory “clarification”. Goldacre’s take on things was chronicled in a astonishing series of articles (1, 2, 3, 4, et al.) which revealed some horrific journalism, including, amongst much else, attributing opinions to people who didn’t hold them and failing to reveal conflicts of interest. If for some reason you’re not already a Goldacre fan, read those posts, and you’ll see what all of the fuss is about. But you need to know one other thing – he is literally the only journalist in the country who does what he does.

The most damning criticism at the time, however, was that the research in question could not possibly have found an increase in autism rates, let alone a “big surge”, a “dramatic rise”, or an “upward trend”. The new research, quite deliberately, used more extensive assessment criteria than previous studies. It was specifically designed to find the highest possible estimate. So only a fool would try to compare it to other sets of data and see this as evidence of rising rates. Also, even if there had been a real increase, it couldn’t have been because of MMR, because the kids in both studies will have had the MMR vaccine. The oldest kids in the Baird et al study of 9-10 year olds were born in 1991, a few years after MMR was introduced, while the youngest in the Baron-Cohen study were born in 2000, when MMR uptake was, if anything, lower, thanks to the MMR-autism scare.

Now, two years after The Observer’s “scoop”, the research is finally out in the British Journal of Psychiatry: Prevalence of autism-spectrum conditions: UK school-based population study. I’ll be examining this paper in detail in the next post, but here’s what you need to know if you remember the story from 2007:

The paper doesn’t mention the Observer affair but it’s obvious that the authors had the article in mind while they were writing up their results. They repeatedly emphasise that their prevalence estimate cannot be compared to previous ones. They make it very clear (to the point of seeming a bit stilted) that they believe that the apparent rise in prevalence of autism over time is due to better detection and diagnosis, rather than a real “epidemic”. And they do not mention MMR – not that they had any reason to, of course. The highest estimate they arrive at, which they say is probably somewhat too high but close enough, is 1 in 64 children. 1 in 58 doesn’t appear in the paper.

What’s most interesting about the paper is who wrote it. The author list includes Simon Baron-Cohen (obviously) and Fiona Scott. The Observer named Scott as an MMR-autism theorist, something she strongly denied, in 2007. However, fascinatingly, Carol Stott is not an author, although she receives a massive acknowledgement at the end of the paper – “Carol Stott was a member of the research team throughout the main phase of the study and contributed to the coordination and running of the study, data management and data collection. She also made valued contributions to team discussions.” On the basis of this, she clearly had a right to be listed as an author – but wasn’t. We can only assume that she chose not to be, because if the other authors had left her off the list without her permission they would have been guilty of a serious breach of trust.

Carol Stott, you’ll remember, played a role in the Observer autism story. Unlike Fiona Scott, she does (or at least did in 2007) believe that MMR is linked to autism, and she had very close links with Andrew Wakefield as well as displaying a, er, penchant for the scatological in some bizarre emails to journalist Brian Deer. (Goldacre does say he “genuinely warmed to her, and she regrets that many people have fallen into entrenched positions on MMR on both sides” though, so she’s not all bad!)

So, questions remain. How did the preliminary research get leaked in 2007? What happened to make 1 in 58 become 1 in 64? What’s the deal with Stott? We don’t know. But we do know a bit more about autism thanks to this paper, and in the next post I’ll be discussing that.

[BPSDB]

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