Autism is a mystery, not a medical conspiracy Gerald DeGroot

http://scotlandonsunday.scotsman.com/opinion.cfm?id=237982004
THE knives are out for Andrew Wakefield, the doctor who linked autism to the MMR vaccine. Over the last few weeks, various reports have indicated serious flaws in his research. News has also emerged that he received (but did not disclose) £55,000 from a legal aid project set up to look for links between the vaccine and the disorder. Richard Horton, editor of The Lancet, admitted that his journal would not have published Wakefield’s paper in February 1998 had it known about his conflict of interest. Stated simply, for the last six years parents have been tortured by a myth.

With Wakefield discredited, the government now hopes that a line can be drawn under this sorry episode. But I suspect that we have not seen its end. Wakefield will emerge as a martyred hero, a brave and lonely warrior waging battle against the conspiratorial medical profession. The pain he has inflicted on parents of autistic children will continue.

In contrast to Wakefield, I intend to declare an interest at the outset. My son Josh is autistic. Like most children, he was given the MMR vaccine at around 18 months. Shortly afterwards, he began exhibiting the first signs of what we now identify as autistic behaviour. The link between these two events is tempting, but, for reasons of sanity, I have resisted it.

In the vast majority of cases, autism manifests itself at around two years, or, in other words, just after the MMR is administered. This coincidence inspired Wakefield’s study. In 1998, his team reviewed reports of children with bowel disease and autistic symptoms. Their research led them to conclude that the MMR shot caused developmental regression, in some cases within 24 hours of vaccination.

Needless to say, these ‘findings’ sent shock waves through the medical profession and, at a stroke, undermined the vaccination programme followed by most countries. Worried parents withdrew their children from the MMR regime. In this country, 91% of children received the vaccination before Wakefield’s report. Coverage now stands at 79%, leading to fears that epidemics of measles, mumps and rubella will result.

The flaws in Wakefield’s research are huge. His sample consisted of just 12 children, all of whom displayed autistic symptoms. In other words, there was no control group of healthy children for comparison. The way the children were selected also seems suspicious. In nine cases, the parents or paediatrician speculated that the MMR vaccine had contributed to behavioural problems. So they were already disposed to the idea of a connection. These children were referred to Wakefield, rather than being a random sample of autistic children. Furthermore, in four cases, the symptoms of autism pre-dated the administration of the vaccine.

As far as I’m concerned, these flaws are sufficient to reject Wakefield and to conclude that I did not endanger my son’s well-being by agreeing to the MMR. Some parents, however, feel that the slightest indication of a link is sufficient to decline the vaccination, even at the risk of exposure to measles, mumps or rubella, which have potentially more catastrophic consequences than autism.

To maintain suspicion requires not only ignoring the flaws in Wakefield’s research, but also turning a blind eye to the large number of studies which show no causal link. The conclusions of these studies are remarkably similar: all show that, during the period under investigation, the incidence of autism has increased dramatically, while the level of MMR vaccination has remained virtually constant. If there were a link, one would expect the shape of the MMR level of immunisation curve to be very similar to the autism case numbers, which it is not. In the most comprehensive research, all children born in Denmark between January 1991 and December 1998 were studied. Of 537,303 children, 440,655 received the MMR shot, while 96,648 did not. Researchers found no difference in the incidence of autism between the two groups.
‘Trust is often the only lifeline to sanity’


Some parents are nevertheless inclined to trust Wakefield’s skewed sample of 12 rather than the conclusions drawn from studying hundreds of thousands of children around the world. The stubborn persistence of the MMR myth implies a belief that the medical profession is riddled with corruption and that doctors in many different countries have conspired in the forced administration of a vaccine which is dangerous. Organising a conspiracy of such proportion seems mind-boggling, especially since the precise purpose of doing so is unclear. As far as I can tell, doctors have nothing to gain from administering the MMR, other than the noble one of protecting the population from dreadful diseases.

The MMR myth is, I think, a symptom of our compensation culture. There was a time when we accepted that some ailments had neither cause nor cure. We labelled them ‘acts of God’. These mysterious diseases were part of life’s lottery. But, over the last century, the advancement of medicine has meant that many medical conundrums have been solved. This advancement has, in one way, been to the detriment of the medical profession. People nowadays believe that all ailments should have explanation and cure. When they do not, the doctors are blamed, and compensation is sought.

We live in a time of strange irony: although the quality of medical care has never been higher, trust in the medical profession has never been lower. This lack of trust is dangerous, not just to our physical health, but also to our mental well-being. There are few things more emotionally corrosive than being confronted with a serious illness and not trusting one’s doctor. Having been in a room while doctors struggled to keep my child alive, I can vouch for the fact that trust is often the only lifeline to sanity.

Granted, the MMR/autism episode was not handled well. The NHS and the government, for instance, failed to explain properly why a system of phased injections is not an adequate alternative. While this might seem attractive to individuals, applied across the country it would mean multiplying the number of doctor visits by three, which would overwhelm NHS resources. More importantly, it would mean that, while waiting for the series of injections to be completed, children would be vulnerable to dangerous diseases, thus increasing the risk of an epidemic. According to the Center for Disease Control, if phased injections were instituted in the US, four million children would be exposed to rubella for an additional six to 12 months.

Autism is a mysterious condition. It arrives virtually without warning, utterly transforming a seemingly normal child. In its worst cases, effective therapy is severely limited. The child’s detachment exacerbates the parents’ feeling of helplessness. In such situations, it is understandable that parents should seek an explanation, in a vain attempt at closure. But explanation of the condition, whether based on solid science or suspicious myth, does not change the child.

I don’t know why my son is autistic. I suspect it has something to do with his mysterious genes. For now, I find the idea of a mystery much more comforting than the possibility of a conspiracy. With a little trust, we might be able to put this sorry tale behind us, and instead of pouring energy and money into finding a culprit we can instead direct resources toward finding a cure. http://scotlandonsunday.scotsman.com/opinion.cfm?id=237982004