Immune to the evidence
Four years after alleging a link between MMR and autism, Dr Andrew Wakefield has failed to persuade a single reputable authority. So why do so many still listen to him?
Dr Andrew Wakefield defends his case against the measles, mumps and rubella (MMR) vaccine on the grounds that he ‘trusts and believes’ parents who are convinced that MMR caused their children’s autism (1). As a parent of an autistic son, I know that we are the last people who should be regarded as a reliable source of scientific information about this condition.
It is a devastating experience to discover that your child is autistic. You feel a combination of shock, grief, anger and anxiety, fluctuating in intensity over many months. Your sense of desperation gets worse as you find out that the condition is lifelong and that there is little understanding of what causes it and less of any effective treatment for it. In this state of distress, you will cling to any explanation or any offer of a cure. It can provide some comfort to have something or somebody to blame.
Parents of autistic children are vulnerable to plausible scientists claiming to have discovered new theories of what causes autism and to purveyors of miracle cures, such as secretin, dimethylglycine, and diverse diets, vitamins and mineral supplements. In the flourishing world of websites, organisations and magazines advancing pseudo-scientific theories and promoting quack remedies, Dr Wakefield has become a hero. The fact that a wide range of diagnostic tests and treatments are promoted with the best of intentions does not alleviate the damage they may cause: the inevitable disappointment of inflated hopes, and the cost imposed on families whose resources are already stretched in coping with their autistic child or children.
As parents, we look to medical and scientific experts to provide some answers to our questions about autism. It is important that doctors listen to their patients and their families, but that is only the starting point of medical practice – not, as Dr Wakefield seems to believe, also its end point. In a recent interview, Dr Wakefield is quoted as saying that ‘everything I know about autism, I know from listening to parents’ (2). If this statement is true it implies that his knowledge of autism is very limited indeed; if it is not true, which seems more likely, then it is simply patronising and insincere.
Listening is necessary, but not sufficient. Patients expect their doctors also to bring to bear the results of examination and investigation, clinical experience and research, a whole body of knowledge and expertise. We expect more of scientists involved in research as well as clinical practice: we expect them to stand back from our highly subjective and emotionally burdened engagement with the problems of autism to pursue objective, dispassionate inquiries.
Intuition sometimes provides clues worth pursuing in the course of clinical and scientific investigation. More often, it does not. If intuition were a reliable guide then we could all follow our feelings and hunches, and science would be superfluous. Science is counterintuitive: it reveals that the evidence of our emotions, and indeed of our senses, is often misleading.
For example, intuition suggests that, when one event follows another, as the diagnosis of autism (often when a child is around 18 months old) does the MMR jab (usually given between 12 and 15 months), then the one may have caused the other. However, science tells us that association does not prove causation and a vast amount of scientific research around the world has failed to reveal any link between MMR and autism. Though 500million doses of MMR have been given worldwide over the past 20 years, the scare about autism is confined to the UK.
Dr Wakefield presents himself as an advocate for people with autism and their families, heroically championing our cause against the medical and political establishments. Though he is widely regarded as an expert on autism, he has only taken an interest in this area over the past five years. Whereas most researchers on autism are psychiatrists, psychologists or paediatricians, Dr Wakefield is qualified as a surgeon. Until the early 1990s he was engaged in research into small bowel transplantation in Canada, when he returned to London and switched to gastroenterology and the study of inflammatory bowel disease.
His first work in this area claimed to have established a link between measles and Crohn’s disease – a link that extensive further researches have failed to confirm (3). Dr Wakefield then noticed that several parents were bringing autistic children to his clinic at London’s Royal Free Hospital for help with their digestive problems. He soon discovered that some of them were convinced that their children’s problems were the result of the MMR vaccine and he shifted his focus to study the gastrointestinal problems of children with autism.
Ever since Edward Jenner pioneered vaccination against smallpox in the 1790s, anti-vaccination campaigners have condemned the practice as an unnatural violation of innocent infants that is more likely to cause than prevent harm. These campaigners have never gone away, but given the dramatic successes of immunisation in modern times, until recently they were confined to a fringe of hardline homeopaths and other cranks. The key event that seems to have provoked wider anxieties about vaccination was not the launch of the MMR vaccine in 1988, but the impact of Operation Safeguard in November 1994, when 92 percent of children between the ages of five and 16 received a combined measles and rubella (MR) vaccine.
This campaign was justified by the prediction of a big outbreak of measles – but a widely publicised article questioned the validity of the claim that an epidemic was imminent (4). Whether or not the major ‘Measles Kills’ advertising campaign was justified, within 12 months of Operation Safeguard hundreds of families were claiming that their children had suffered serious adverse effects from the vaccine. A feature article in the UK Sunday Times Magazine in 1995 warned that the vaccine could turn out to be ‘a catastrophic timebomb’. The list of illnesses attributed to the MR jab included ‘severe epilepsy, arthritis, ME, speech and behavioural problems, inflammatory bowel disease, encephalitis, and difficulties with sight and hearing’ (5). It is striking that autism does not appear in the list of conditions blamed on MR (though the article featured a photograph of a youthful Dr ‘Andy’ Wakefield and extensively quotes his, subsequently discredited, work linking measles and Crohn’s disease).
MMR is not the first vaccine to be linked with autism. Bernard Rimland, a veteran American patron of fringe theories and treatments for autism, claims that he began to suspect a link between the DPT (diphtheria, pertussis, tetanus) vaccine and autism ‘as early as in the mid-1960s’ (6).
Rimland quotes a book published in 1985, which suggests a link between the recognition of autism as a condition in the USA in the 1940s and the introduction of the pertussis vaccine a few years earlier (7). Yet in the 1970s, when the DPT was blamed for a number of cases of infant brain damage in Britain (erroneously, as it subsequently turned out) there was no suggestion it might cause autism. (The resulting fall in take-up of the vaccine is estimated to have resulted in ‘at least 70 deaths’ (8).)
By the late 1990s, a number of factors, some specific, some general, contributed to the take-off of the MMR-autism scare (9). We have already noted the growing concerns around MMR exacerbated by the 1994 campaign. Though this campaign targeted older children, anxieties inevitably spread to the 600,000 or so infants who receive MMR every year just after their first birthday. Given the long-recognised trend for around one third of children diagnosed as autistic to appear to be developing normally up to the age of around 18 months when an insidious regression sets in, it was not surprising that this was attributed by some parents to MMR.
There was also a growing awareness of autism and a widespread perception of an increased prevalence of the condition. Though a growing awareness of all sorts of diseases was apparent in the 1990s, the film Rain Man, the books of Oliver Sacks and others and numerous newspaper features stimulated a wider recognition of autism. The controversy about whether the increased prevalence of autism is a real phenomenon or the result of improved diagnosis – and widened diagnostic categories – has produced an interesting polarisation.
A number of internationally respected authorities with long experience in the field – Lorna Wing and Eric Fombonne in Britain, Christopher Gilberg in Sweden – are sceptical and cautious, emphasising the complexities of interpreting the data. On the other hand, Dr Wakefield and his supporters, unencumbered by experience in either autism or epidemiology, were confident that there had been a dramatic increase (a finding congenial to their MMR-autism thesis).
In the course of the 1990s, a growing consciousness of risk was a widely recognised feature of British society. There was heightened sense of vulnerability to all sorts of environmental dangers, from global warming to electromagnetic fields, ionising radiation and diverse toxins and pollutants. Threats to health, particularly to the health of children, became a general preoccupation. The BSE/CJD fiasco, which erupted in 1996, exacerbated a popular loss of confidence in both government and in science. At the very time when anxieties about MMR were intensifying, government reassurances were destined to be ineffective, if not counterproductive. This was the climate in which Dr Wakefield published his first paper suggesting a link between MMR and autism, in April 1998.
In 1998, Dr Wakefield presented 12 cases (nine autistic, one disintegrative psychosis, two possible postviral encephalitis) in which he claimed to have identified a distinctive ‘autistic enterocolitis’. In eight of the cases, the parents linked the onset of symptoms to the MMR jab (10). Two years later he presented a further 48 cases, with similar characteristics (11). Numerous studies have failed to validate either Wakefield’s theory of autistic enterocolitis or its link to MMR – for the most recent see Brent Taylor, et al in the British Medical Journal (12), or Eric Fombonne and Suniti Chakrabarti in the Pediatrics journal (13). Fombonne’s conclusion is unequivocal:
‘[I]t no longer should be possible that investigators who still argue for an MMR-autism link fail to provide precise and replicable clinical and developmental data on their autism samples, thereby maintaining a degree of ambiguity and confusion that is damaging to both the public health and the science.’
Furthermore, Wakefield himself has failed to substantiate any aspect of his hypothesis that MMR or measles itself causes a ‘leaky bowel’ which in turn affects brain function. Instead, in 2001 he published an insubstantial critique of the procedures used to evaluate the introduction of MMR. The research announced on the TV programme Panorama on 3 February claiming to have discovered fragments of measles virus in the guts of children with ‘autistic enterocolitis’ requires further evaluation (14). Nearly four years after publishing his first paper on this issue, Dr Wakefield has failed to persuade a single reputable authority in the world of autism of the validity of his theories.
Having failed to substantiate his theory of autism, Dr Wakefield falls back on his commitment to parents who believe that MMR caused their child’s autism. He seems to relish the role of martyr in which he is now honoured on all the wacky websites. But this posture is self-regarding and self-indulgent. Dr Wakefield invites parents of autistic children to endorse a theory that provides them with an illusory focus for their grief and anger. The problems that this may cause are compounded by ambulance-chasing lawyers who have already amassed more than £1million in legal aid fees through marshalling hundreds of parents in claims for compensation for the alleged injuries resulting from MMR. Such monies would be vastly better spent on serious research into autism – not on further investigation of Dr Wakefield’s theories, as his supporters demand.
This is how the junk science at the root of the MMR-autism link damages the families of children with autism as well as undermining the national immunisation programme, one of the great success stories of modern medicine.
Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).
MMR: immune system as metaphor, by Dr Michael Fitzpatrick
MMR: injection of fear, by Dr Michael Fitzpatrick
MMR: why government reassurances won’t work, by Dr Michael Fitzpatrick
spiked-issue: MMR vaccine
(1) Channel 4 News, 8 February 2002
(2) So what’s not to like about Andrew Wakefield?, Autism Spectrum interview
(3) See Jane Metcalf, Is measles infection associated with Crohn’s disease?, British Medical Journal; 316:166, 17 January 1998
(4) ‘Measles and Deception’, Bulletin of Medical Ethics, 3-9 August, 1994
(5) ‘A Shot in the Dark’, Yvonne Roberts, Sunday Times Magazine, 17 December 1995
(6) See Vaccinations: the overlooked factors, Center for the Study of Autism webpage
(7) DPT: Shot in the Dark, HL Coulter and BL Fisher, Avery Publishing Group, 1991
(8) See MMR vaccination and autism 1998: déjà vu – pertussis and brain damage 1974?, A Nicoll et al, British Medical Journal; 316: 715-6, 7 March 1998
(9) See ‘Health scares and moral panics’ in The Tyranny of Health: doctors and the regulation of lifestyle, Michael Fitzpatrick, Routledge, 2000. Buy this book from Amazon (UK) or Amazon (USA)
(10) ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children’, AJ Wakefield et al, Lancet 1998; 351: 637-641
(11) Americal Journal of Gastroenterology 2000; 95: 2285-2295
(12) Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study, Brent Taylor et al, British Medical Journal 2002
(13) Pediatrics, 108,4, October 2001
(14) The research, by V Uhlmann et al, will be published in the April 2002 issue of Molecular Pathology, but has been published in advance online
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