Autism spectrum disorders are baffling and heartbreaking. The causes are unknown, but it is likely to be an intersection between genetics and exposure to one or more environmental effects (but not maternal behavior)
There is the whole what-effect-does-vaccination-have-on-autism controvery, which is rife with poor science, poor thinking, and new-age quackery, and which has been explored:
In Deer's film the autism authority Pat Howlin denounced the charlatans (some linked to the Wakefield campaign) who are making money out of vulnerable parents of children with autism by selling extravagantly priced preparations of vitamins and amino acids, colostrum and secretin, and other ingredients of unproven efficacy (and unknown adverse effects).
Making parents feel unwarranted guilt about having given their children MMR has caused widespread distress.
Brian Deer's documentary MMR: What the Doctor Didn't Tell You - shown as part of the Dispatches series on the UK's Channel 4 last night - exposed the sleaze and quackery surrounding the campaign claiming a link between the MMR vaccine and autism.
Dr Andrew Wakefield, the gastroenterologist who first suggested this link in a now-discredited article in the Lancet in 1998, presents himself as a serious scientist committed to the welfare of children with autism. Yet Deer revealed Dr Wakefield's commercial interests in discrediting the MMR vaccine (through a patent for a rival vaccine for measles) and the extent of his collaboration with charlatans who exploit vulnerable parents with offers of unproven treatments, even 'cures', for autism. Many viewers will have been shocked to discover the extent of Dr Wakefield's links with religious fundamentalists and alternative health crackpots in the USA.
Deer's programme forcefully revealed the impact of the MMR scare. The mother of a little girl with autism described how she felt 'incredibly guilty' at the thought that her decision to give her daughter MMR had made her autistic (though she and the girl's father later rejected this specious notion). Another mother described how she had cancelled an appointment for her son to have MMR after becoming confused by conflicting advice from health professionals and the internet (where ill-informed anti-immunisation propaganda, some influenced by Dr Wakefield, is widely available). In Dublin, the parents of a child who died of complications of measles following the recent outbreak there described their heartbreaking experience.
While Dr Wakefield is due shortly to answer charges of professional misconduct before the General Medical Council, Deer's exposure of the junk science at the root of the MMR scare raises questions that go far beyond Wakefield's personal role in the affair. It is not unprecedented for a scientific researcher to become so convinced that he has made a major discovery that he becomes blind to all evidence to the contrary. Enthusiasm and dedication can easily turn to self-delusion and, once scientific rigour is relaxed, error and confusion are almost inevitable. However, the fact that Dr Wakefield's insubstantial and speculative researches came to have a major public impact suggests a failure of the mechanisms of scientific quality control at a number of levels.
The Royal Free Hospital
Deer's documentary included footage from the video produced by the Royal Free Hospital to accompany the notorious press conference at which Dr Wakefield's 1998 Lancet paper was launched.
He drew attention to the roles of senior adult gastroenterologist Roy Pounder, Dr Wakefield's boss, and senior paediatric gastroenterologist John Walker-Smith, who had clinical responsibility for the children who were subjected to invasive and distressing investigations in the course of Dr Wakefields's research. Dr Nick Chadwick, a junior member of the research team at the time, recalled how the fact that, using a validated technique, he had failed to find traces of measles virus, in either gut biopsies or cerebrospinal fluid specimens of the children included in the Lancet study, was ignored by Dr Wakefield and omitted from the published paper. Dr Chadwick described Dr Wakefield as a charismatic team leader who simply dismissed his findings. Were Professors Pounder and Walker-Smith (both now retired, but still active in medical affairs) also captivated by the Wakefield charisma?
As dean of the medical school, Professor Arie Zuckerman authorised the promotional video and presided over the press conference (the medical school was also named on Dr Wakefield's patent applications). It seems that some senior figures were prepared to indulge Dr Wakefield's activities, particularly if these brought a higher media profile to the flagging teaching hospital. (In the event, the resulting bad publicity contributed to the demise of the independent Royal Free medical school, which was subsequently assimilated into the University College consortium.)
The role of the Lancet in the MMR affair came under intense scrutiny earlier this year when Deer revealed in The Sunday Times that Dr Wakefield had failed to declare a conflict of interest arising from his receipt of a grant of £10,000 from the legal aid board to investigate some of the same children included in the Lancet paper.
As a result, 10 of the co-authors retracted the suggestion of a link between MMR and the distinctive inflammatory bowel condition they claimed to have identified in 12 children with autism or other developmental disorders. Yet, irrespective of the conflict of interest, the question of why the Lancet published such an insubstantial and speculative paper remains unanswered (even in the recent book on the subject by the Lancet's editor Richard Horton - see MMR: 'A reparation, of sorts'). The failure of the Lancet's peer review process gave legitimacy to Dr Wakefield's campaign against MMR, with damaging consequences for families of children with autism and public health.
The medical establishment
When asked to comment on the product patented by Dr Wakefield for the treatment of children with autism and inflammatory bowel disease (involving measles virus, the white blood cells of mice, and goats' milk), leading gut immunologist Tom Macdonald described the recipe as 'total bollocks' (1). Interviewed by Deer at a recent conference at Oxford, a number of international authorities also shook their heads over the patent, pronouncing it 'strange', and 'very strange'.
But the details of these patents only confirm what was apparent to experts in the field from the outset. A glance at the Lancet paper reveals a reference to the work of Hugh Fudenberg, described by Deer as 'the grandfather of the MMR scare', well known in the USA for the dubious practices exposed in Deer's film. (The paper also includes references to other purveyors of unproven tests and treatments, including Vijendra Singh and Sudhir Gupta in the USA, and Paul Shattock in the UK.)
What is really strange is the fact that it has taken nearly seven years since the publication of the Lancet paper for senior figures in the medical world to state in public what they have been saying in private since the outset. Meanwhile, largely as a result of the Wakefield campaign, the uptake of MMR has gradually declined to a level that makes outbreaks of measles and other diseases likely.
Contrary to the view promoted by the anti-MMR campaign that their champion has been vilified and censored by the medical establishment, the real problem is that leading authorities in the relevant fields have been very reluctant to challenge publicly the baseless claims made by Dr Wakefield and his supporters. In Deer's film, molecular biologist Professor Ian Bruce, an early collaborator with Dr Wakefield, endorsed Dr Chadwick's findings and conceded that he 'should have said something' to deter the MMR scare that resulted from Dr Wakefield's flawed research. Dr Chadwick indicated that, as a junior member of the team, he felt unable to blow the whistle on Dr Wakefield's violation of basic scientific principles.
In Deer's film the autism authority Pat Howlin denounced the charlatans (some linked to the Wakefield campaign) who are making money out of vulnerable parents of children with autism by selling extravagantly priced preparations of vitamins and amino acids, colostrum and secretin, and other ingredients of unproven efficacy (and unknown adverse effects). Though this was a welcome statement, it is striking how late in the day leading figures in the world of autism have emerged to take a public stand in response to the campaign against MMR and its associated abuses.
It seems that the vociferous and well-organised group of parents supporting the Wakefield campaign have effectively intimidated many of the prominent authorities in the field. The consequence of appeasing these parents have been serious, not least for those who have been drawn into the protracted process of litigation, from which they have emerged, inevitably, with nothing. Making parents feel unwarranted guilt about having given their children MMR has caused widespread distress.
If Deer's film reveals the feebleness of many medical authorities in responding to the challenge of Dr Wakefield's junk science, it also offers some vindication for the small group of doctors who have taken a consistent and robust stand in defence of the interests of child health in general and of children with autism in particular. While Dr Wakefield has been lionised in the press and on television, these doctors have been subjected to scurrilous personal abuse, particularly through the internet. They include community paediatricians Brent Taylor, David Elliman and Helen Bedford, vaccine specialists Elizabeth Miller and David Salisbury, and, from the world of autism, Christopher Gillberg and Eric Fombonne.
Brian Deer has gone some way towards redeeming the reputation of the media, which has generally served the public poorly in the MMR controversy.
Dr Michael Fitzpatrick is the author of MMR and Autism: What Parents Need to Know, 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).