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by Polly Tommey
I am getting seriously worried about the "politics" of autism here in the UK.
The Autism File exists to provide help and support to parents, professionals, and caregivers in understanding autism better by bringing informed articles and opinions on the condition from all over the world and enabling them to then make up their minds about whether this advice will help their families and their children. We have done this for over 10 years and our readers’ feedback supports our continuing to do this.
However, over the past few months, and for reasons I cannot yet understand, a number of people and organizations have evidently decided that they should be determining the editorial policy of our magazine . . . .
Specifically, I have been "warned" not to print any more articles written by Dr. Andrew Wakefield (he wrote for the first time in the last issue); I was also warned not to invite him to speak at our conference. Separately, some organizations have warned me that they will not have anything to do with me if I continue to support and publish papers by him. Some advertisers tell me they have to stop working with us as they are "under pressure" to pull out, and a number of celebrities, high earning individuals, journalists, scientists, practitioners, and people who want to contribute to the magazine or to our campaigns say that it’s more than their job’s worth to be associated with the work of this man more than their job’s worth to even listen to what he has to say. All of them say that they can’t support The Autism File if The Autism File appears to support Dr. Wakefield.
In the first case, very recently, I met with a senior representative of a leading autism organization. We met, at his request, not at his office, but at a café in London. He told me that he was aware that at our recent UK conference, I had introduced Dr. Wakefield and had openly declared my support for his research to continue. This, it seems, had presented his organization with a serious problem. The message I was very clearly given at this meeting was that if The Autism File magazine continued to publish Dr. Wakefield’s work, if I continued to support him publicly, and if I allowed him to speak at our conferences, then they could not work with either me or The Autism File. He also reminded me, very pointedly, that they worked closely with the Department of Health and were the decision makers regarding many important issues relating to autism . . . .
In the second case, some time ago I interviewed a notable academic from the UK autism community, and I invited him to join our scientific advisory board. He was keen but stated he could only do so if certain existing members – specifically including Andrew Wakefield – were removed from it. He then bluntly warned me that if The Autism File continued to support Dr. Wakefield it would be "shut down." Despite his standing and expertise, his concern was such that ultimately he chose not to even write for our magazine because, he said, “it is too controversial,” and, given that he is funded by the government, he felt that if he did, then his funding would be at risk.
So, why do these people feel so strongly about this? Why is there such fear? Their reason, apparently, is that Dr. Wakefield is "discredited."
“Discredited by whom?” I asked the man
from the autism organization at the café.
“He just is . . . everyone knows that,” came
the reply. OK, so he doesn’t know. And this
type of presumptive and unchallenged answer
comes from all quarters.
Let’s just look at the facts here:
There are two main sources behind the idea that Dr. Wakefield is "discredited." One is a freelance journalist, Brian Deer; the second is the editor of The Lancet, Dr. Richard Horton. Between them, these two men sowed the seed of the "discredited" myth over a few days many years ago in February 2004. The full story will be made public in the near future, having already been presented in evidence to the UK’s General Medical Council. However, as far as anyone being "discredited" is concerned, it goes as follows.
In the days leading up to Deer’s initial "revelations" about Andrew Wakefield and others in The Sunday Times in February 2004, a meeting took place between Deer and Horton in which Deer made a number of claims. These all centered on a paper written by Dr. Wakefield and colleagues, which was published in The Lancet in 1998. In the now notorious paper, Wakefield et al. had reported on a possibly novel form of bowel disease, with autistic-like developmental regression, in 12 children referred to the gastrointestinal department of London’s Royal Free Hospital. Eight of the children, according to their parents or general practitioner, had the onset of developmental regression soon after their MMR vaccine.
Despite what is usually inaccurately reported in summary, the paper actually concluded that: "We did not prove an association between measles, mumps and rubella vaccine and the syndrome described … further investigations are needed to examine this syndrome and its possible relation to the vaccine."
In the February 2004 meeting, the major issues of relevance to Dr. Horton were three specific claims made by Deer. First, he claimed that The Lancet study was funded by Legal Aid money. Second, he claimed that the children reported in The Lancet were sourced by lawyers. Third, and perhaps most crucially, Deer claimed that Dr. Wakefield had hidden his involvement with Dawbarns, the firm of lawyers involved in the MMR litigation, from The Lancet and Dr. Horton.
On hearing these claims from Deer, Horton was apparently horrified, and within hours of the meeting he stated publically that the 1998 paper was "fatally flawed." He further claimed that had The Lancet been aware of Wakefield’s involvement with Dawbarns at that time the paper would never have been published. This statement about the "fatally flawed" paper was, therefore, the seed of the "discredited" myth that prevails and is clearly influencing many more people today.
Let’s fast forward to the GMC hearing, which has been investigating these claims for nearly three years. What do we find?
First, it has been demonstrated beyond doubt that The Lancet study was not funded by Legal Aid. Not one penny of Legal Aid money was used for the study. Second, it has been shown that the children in the study were not sourced by lawyers. None of the children reported in The Lancet study were involved in any legal action at the time of their referral to the Royal Free Hospital. Third, we now know that The Lancet had been told, in communications between Dawbarns and Horton, about Dr. Wakefield’s involvement with them in April 1997. So, they knew. A whole year before the paper was published, they knew.
There are many other aspects to this convoluted and exhausting story, but the idea of Dr. Wakefield’s being discredited comes straight from this inaccurate exchange in 2004 between two journalists, one an academic, the other one not.
So, back to my friend from the well-known national autism organization.
He evidently believes Dr. Wakefield will be struck off by the GMC and has drawn his own conclusions rather too soon. Now, either he has some privileged access to a decision that hasn’t yet been made (which is a worrying thought) or he is making his own assumptions without access to the evidence.
The fact that he was badly informed and willing to prejudge a situation about which he clearly knew very little comes as no great surprise. But for me, finding out that this is the position taken by a major and influential autism organization is more concerning. Of most fundamental importance, however, is that the future of our magazine was being threatened as a result. And that is, frankly, stunning.
As a journalist trying to understand the politics of autism, bigger questions have to be answered:
• Why is it so important that Dr.
Wakefield is seen to be discredited?
• Whom is it important to?
• Who stands to gain from this?
• Who will lose out if the truth is revealed?
• What is it that people are so frightened of?
• What is it they don’t want us to know?
At around the time of World Autism Awareness Day this year, I appeared with a colleague on the Wright Stuff television chat show on Channel 5. Before going on air, the host Matthew Wright joined us in the "green room" and said that he had been told by the show’s lawyers that if Dr. Wakefield’s name was mentioned, he had to say that Wakefield was "discredited." We questioned why, but Matthew said that he had no choice these were his lawyers’ instructions . . . .
When I was on GMTV they said pretty much the same thing, and we have all read the same in many newspapers.
Again I have to ask: Discredited by whom? And why?
This is my take on the whole thing: Billy, my son, had a bad reaction to the MMR vaccine, a reaction that I know caused irreversible damage. I owe it to him and the many other parents who have children like my son to support research into vaccine safety and into the possible association between some vaccines for some children and some forms of autism. Surely, research into vaccines and their possible side effects is something that should be ongoing anyway?
But why the warnings? And why can others write but not Dr. Wakefield?
Our "blogger friends" seem to be prime movers as they consistently join in enthusiastically in perpetuating the "discredited" theory. There are about 5 or 6 of them (pretending to number about 20 or 30), and they obviously don’t like me (to put it mildly). I have never met them (at least never under the names they use in the blogosphere), and they certainly don’t know me. But they love to blog about the fact that I am "anti-vaccination" and a "Wakefield supporter."
Sadly, if I really was anti-vaccination, Billy might be outside playing football with his friends as I’m writing this. But he’s not. He lives away from home now in an environment where his needs can be met, needs he would never have had if his mother had been "anti-vaccination."
There is no doubt in my mind that certain children are simply not OK to receive several vaccinations at the same time. Some children, some babies, some toddlers are simply unable to cope. Some may need a different vaccination schedule. For some, it might always be unsafe. A safer vaccination schedule would increase uptake in the healthy population, protecting those for whom vaccination is more dangerous. So, why are we not allowed to support research into this? How do we know which children are OK and which are not?
Toby (my youngest) has received no vaccinations. I won’t risk it. He also happens to be the only one of my children who has never had antibiotics and has never seen a doctor, apart from the time he got a large cut falling off a bike.
So, is Dr. Wakefield a threat because he is presenting research evidence that vaccination does cause damage to some individuals? If he isn’t producing further evidence, then why is everyone so desperate to stop him or anyone reporting this? It just doesn’t make sense.
I don’t think that vaccination causes all autism. Far from it. There are different types of autism and different causes. Here at The Autism File we discuss and print reports on all perspectives. That’s part of what the magazine is about, asking the questions and discussing the answers.
Some time ago my only certainty was that something happened to Billy after his MMR jab. Then over the years I heard enough from other families to know that Billy wasn’t the only one this happened to. I am now more certain than ever that there is more to this than I had ever imagined.
So, why the block on vaccination research? Why are threats being given to so many to not bring this subject up? Just give me one good reason why I should not print Dr. Wakefield’s articles . . . .
Discredited? I ask you again: how and by whom?
Polly Tommey is Editor in Chief of The Autism File magazine.