“The Wakefield Witchhunt” - Melanie Phillips - The Spectator - Friday, 21st March 2008
A couple of days ago, yet another story appeared claiming that fresh research had shown that there was no link between the MMR vaccination and autism. This new research was said to have shown that, contrary to the claims made by Dr Andrew Wakefield, the surgeon at the centre of the MMR scare, there was no relationship between gut problems and autism, the core of his concerns. It also claimed that the discovery furthermore damaged the related theory that a gluten-free diet could help children with autism.
This must be a first, even when judged by the standards of accuracy previously set by newspaper columnist, Melanie Phillips. Every statement of fact in her opening paragraph is wrong! The ”fresh research” makes no mention of MMR apart from acknowledging a potential conflict of interest because one of the authors, John March “has previously acted as an expert witness for the litigants in the MMR litigation case conducted by Alexander Harris against three MMR vaccine manufacturers, which involved urinary analysis of both litigants and non-litigant controls using MALDI-TOF mass spectrometry. He has an autistic child who was not part of this legal case.”
The next sentence is very telling, “was said to have shown that…” Was said by whom? Has Ms Phillips actually read the research in question or is she relying on her feed from LexisNexis? If she had read the research paper she would know that it makes no claims regarding the purported link between gut issues and autism. Neither does it question the efficacy of the gluten and casein free diet. The authors are careful not to dismiss the diet. Instead they call for more research into it. NHS Choices gets it right.
Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the ’leaky gut theory‘. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.
Ms Phillips is on firmer ground when quoting directly from the press release
“Dr Hilary Cass, from Great Ormond Street, said: ‘It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten-free diet which as yet lacks an evidence base.’
But then she puts her foot in it by adding her own commentary
This particular observation is a telling indication that this study bears little relation to reality. For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.
All together now, for the benefit of Ms Phillips: The plural of anecdote is not data! Testimonials from parents need to be backed up by solid data from properly conducted research. We are awaiting the outcome of a couple of studies that may provide that evidence base.
Second, despite the way this was presented in the media this is not a new piece of research at all. It is instead a recycled version of a study by Baird G. et al, published in the Archive of Diseases in Childhood on February 5 and reported in the press around that time.
Oh dear! Where on earth did she get that idea? Baird G. et al did take advantage of an earlier study [Baird G, Simonoff E, Pickles A, et al. "Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)" Lancet 2006; 368:210–15.] for their study of “Measles vaccination and antibody response in autism spectrum disorders.” But this has nothing to do with Dr Cass.
Dr Cass recruited children “from two tertiary referral centres specialising in autistic spectrum disorders whilst controls were recruited from and mainstream primary and secondary schools in the same geographical area. 65 boys with autism mean age 7:4 years (5-11) and 158 control boys mean age 7:8 years (4:2-11)”
Dr Baird used “A community sample of vaccinated children aged 10–12 years in the UK with ASD (n=98) and two control groups of similar age, one with special educational needs but no ASD (n=52) and one typically developing group (n=90), were tested for measles virus and antibody response to measles in the serum.”
So Dr Cass “recycled” this study using different researchers, different children, different research aims and methods, and different funding bodies. The two studies are totally unrelated. Nevertheless Ms Phillips goes on to cite Wakefield’s response to Baird et al and a letter by John Stone in response to Baird et al as if they apply to Cass et al! Not that this mattters to Ms Phillips. Nowhere does she discuss the content of either Baird’s or Cass’s research or evaluate the hefty quotations from Wakefield and Stone. (They total 1100 words in an article of 2000 words. I wonder if she is paid per column inch.) No. This is just another way to reiterate the myth of the martyrdom of Andrew Wakefield at the GMC.
No stone is being left unturned by the medico-political establishment and its creatures in the media to ensure that this doctor is destroyed.
Ms Phillips, like David Kirby, has pretensions of impartiality.
As I have repeatedly said, I have no idea whether Wakefield is correct or not in his concerns about the possible adverse effects of the MMR vaccine on a small sub-set of vaccinated children. Nor do I know whether any of the charges being levelled against him at the GMC has any legs. But I do believe — as I wrote in my series of articles on the subject for the Daily Mail in 2003 here, here and here — that many of the statements made by the Department of Health and medical establishment about the ‘proof’ of the vaccine’s unchallengeable safety are deeply misleading.
Wow! She has no idea about MMR and autism. She has no opinion on Wakefield’s culpability. But she does have an opinion on the stated opinions of the Department of Health and the medical establishment on these very matters. Furthermore, her opinion of the opinions of others on matters on which she has no opinion is the same opinion she had 5 years ago and we can read it “here, here and here.” Meanwhile, back to the present and a few more gems from Ms Phillips.
No-one has ever suggested that the MMR vaccine causes all or most of the incidence of autism. If Wakefield is correct, it is only a small proportion of children whose immune systems may be unable to cope, for whatever reason, which makes them particularly vulnerable to such ill-effects.
No-one? How about the presenter of “Origins of the Autism Epidemic,” Andrew Wakefield. And how small is a small proportion? Researchers like Cass and Baird provide us with data. According to Wakefield:
“We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children.”
“Several thousand children?” We know he had examined 12 children by 1998 There were around 1300 children in the UK class action against MMR that failed. Perhaps he examined them all. Then Wakefield went to work for Jeff Bradstreet, an exorcist in Florida before setting up Thoughtful House in 2005 where Arthur Krigsman scopes every child that walks through the door. If we average it out and say 2 children a day every day, not counting weekends and holidays for 10 years that gives us around 5000 kids with and endoscopic investigation and 4000 turned up positive for enterocolitis and autism. Yeah, whatever. Perhaps Wakefield will publish his data one day and end all the guesswork.
And contrary to the message being pumped out by the medical establishment that the vaccine has been proved to be safe — by studies which are all either flawed, inadequate or irrelevant — the fairest and most accurate thing to say is that the jury is still out.
Vaccines will never be “proved safe” if by this you mean that they will be absolved of all risk. But they are safer than the diseases they protect against. How about it Ms Phillips? Would you like polio or the polio vaccine?
One of the most reprehensible weapons being wielded in the witch-hunt against Wakefield is the claim that anyone who gives any credence whatever to his concerns is responsible for the incidence of measles amongst children whose parents are as a result too frightened to give them the MMR vaccination. There are two obvious points to make in response to this piece of moral blackmail: 1) the whole panic could have been avoided by offering single measles, mumps and rubella jabs rather than the triple MMR, and 2) it is surely just as important as avoiding cases of measles mumps and rubella to avoid causing the kind of catastrophic damage to the brain and gut displayed by the children at the heart of this controversy.
Wrong again! Offering single vaccines is tantamount to admitting that MMR is dangerous. It would have destroyed public confidence in the whole vaccine schedule and take up of the three shots would have been significantly less than the triple shot, always assuming we could source three separate vaccines that had been adequately tested for safety. And regarding point 2), hang on! How do you know that single vaccines would avoid this “kind of catastrophic damage” unless you already had an opinion about the effects of the MMR? Remember? The opinion that Ms Phillips claims not to have?
And there is a further and quite appalling point to note. This whole saga started because parents of such children found that their family doctors were dismissing out of hand their children’s gut and brain problems, accordingly refusing to alleviate their suffering. Now, as a direct result of the animosity towards Wakefield that has been whipped up — and the fear that any doctor who suggests he might be right will similarly find him or herself at the receiving end of the medical establishment’s fist — children exhibiting this combination of gut and brain damage are finding it difficult to obtain treatment.
Yes! Because quacks like Wakefield and their silly media acolytes have made it next to impossible for a doctor to diagnose and treat GI disorders in autistic children without being tarred with the same brush! Thank you Dr. Wakefield. Thank you Ms Phillips.
As the resumption of the GMC hearing draws nearer, one has to ask whether this will serve the cause of truth and justice and the relief of suffering — or is it instead merely a show trial which will bring about the precise opposite?
I hope that Wakefield is severely chastised and that we can move on to addressing the real needs of autistic children and adults free from the need to constantly address spurious scare stories about vaccines.
Melanie Phillips writes for the Spectator. It’s editor used to be Boris Johnson, who masked his intellectual prowess with the appearance of dimwitted buffoonery. Ms Phillips is just the opposite.
March 23rd, 2008
Posted by
Mike |
Andrew Wakefield, Autism, MMR, journalism, parents, politics, vaccines |
13 comments
Sunday’s Observer featured one parent’s account of the joy and the difficulty that comes with raising a severely autistic child. “Our struggle to understand David’s secret autistic world” Christopher Stevens and his wife, Nicola have also written a book about their son, A Real Boy, which received this endorsement from NAS president, Jane Asher,
This wonderfully honest book tells us a great deal, not only about autism, but also about the extraordinary tolerance and unselfishness that is born out of unequivocal love. At the same time, it reveals some uncomfortable truths about the struggle it takes to access the rights of those with disabilities in our so-called civilized society.
Today I want to leave aside the family’s personal story in order to respond to Christopher Stevens’ argument that
- Prior to 1944 autism was virtually unknown.
- Autism was still very rare when he was born in 1964. But it has spread rapidly since then.
- The most rapid growth has been in those severely affected, like his son.
- Autism is so distinctive that it is unfeasible to suggest that it was somehow missed by everybody before Kanner. Kanner noticed something new.
- Autism is a twentieth century phenomenon that has grown to epidemic proportions in the 21st century.
HISTORY
Stevens seems unaware of a long history of autism that fills the void between Victor and Kanner when he writes:
Children like David were almost unheard of before Kanner. There’s one account, from Napoleonic France, of a boy found living wild in woods near Toulouse. Like our son, he treated people as tools. When he wanted to ride in a wheelbarrow, he would grab his doctor by the wrist, drag him across the garden, press his fingers around the handles and then climb into the barrow. And there’s a brilliant, beautiful report from 1869 by Mark Twain – he describes a piano recital in San Francisco by Blind Tom, an apparently autistic savant who could barely talk, yet who could imitate any sound, learn three melodies simultaneously and reproduce duets note for note at a single hearing.
Perhaps he is not aware of the paper by Shattock and Waltz who found evidence for autistic disorder in 19th century London based on “case histories from the notes of Dr. William Howship Dickinson at Great Ormond Street Hospital for Children.” Darrold Treffert has also paid tribute to Langdon Downs for identifying autistic children in 1887.
Autistic Disorder, while not named such until 1943, has existed for the same long time as other forms of developmental disorder and mental retardation. It is not a new disorder. In his writings in 1887 Dr. J. Langdon Down did not separate out autistic Disorder from mental retardation, but there was group of patients sufficiently different from his ‘congenital’ and ‘accidental’ forms of mental retardation that he felt compelled to set us a new category-’developmental’ — to describe a group of patients “impossible to include” in his two other categories of mental retardation. As he describes some of the traits and behaviors of some of these persons — “world of their own,” talking in the “third person,” being in a “dreamland,”"echolalia,”"self-contained and self-absorbed,” “automatic and rhythmical movements,” a countenance and “repose of brightness and intelligence,” lack of “physical features” of retardation, “no response in words,” and indeed elements of savant syndrome itself in this special group of persons — those point in the direction of what is now called autistic disorder as being the appropriate classification for some of these individuals whom Dr. Down had classified as mentally retarded.
Stevens also suggests that Kanner coined the term “autistic,” when he writes that:
The idea that one in 100 British children is affected by a mental disability that was almost unknown a generation ago is shocking and many people try to fend it off. ‘Isn’t this all down to better diagnosis?’ they suggest. If they could see my son, blind to danger and deaf to our pleas, they’d realise it wouldn’t take Sigmund Freud to spot there was something odd about this boy. Freud wouldn’t have said David was autistic, though – he was dead by the time the word was coined in the early 1940s.
In fact the term was coined by Eugen Bleuler, in 1910 when writing about Schizophrenic negativism.
“… schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes [...]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism,”
Bleuler was a contemporary of Freud. Together with Jung they had founded the journal Jahrbuch für psychoanalytische und psychopathologische Forschungen in 1908. Bleuler also gave us “schizophrenia” to describe the condition then known as dementia praecox. He did not believe it was a dementia. Nor did he believe that it was necessarily a disorder of childhood. The irony is that following Kanner’s discovery of “autism” the confusion about the relationship of autism to schizophrenia persisted at least until 1979 when the prestigious Journal of Autism and Childhood Schizophrenia changed its name to The Journal of Autism and Developmental Disorders.
I find it significant that Kanner, publishing in the USA in 1943, and Asperger, publishing in Austria in 1944, independently presented very similar case studies that described their subjects as autistic. Is this really because autism suddenly emerged from nowhere in the middle of the last century? Or was something else happening here?
We have the evidence that autism was identified in the 19th century by Langdon Down, who called it developmental mental retardation. Bleuler coined the term autism in 1910. (It is interesting to note that while Asperger acknowledged Bleuler in his writings Kanner never did, even though he must have been familiar with Bleuler’s work.)
Edit: This is not true. Thank you to Raj for this reference where Kanner does discuss Bleuler’s use of the word, “autism.”
Why the long wait until autism as a developmental disorder of childhood entered the literature?
The twentieth century was also remarkable for another phenomenon. Institutional care, or incarceration, depending on your reading of history, of people with mental health problems grew massively in the first half of the century and then went into an even more dramatic decline. In Unstrange Minds Grinker reports that
Most of these institutions were less than thirty years old, but by 1904, 2 in every thousand Americans lived in one. By mid-century, more than 500,000 Americans lived in mental institutions, more than 3 in every 1,000. [page 37]
Today there are only 2 in 10000 Americans occupying long term mental health care beds. It is not too fanciful to suggest that many of those Americans in the past probably had an autistic spectrum disorder. The UK experience mirrors that of the USA. In 1999, after a significant downsizing of long term hospitals in favour of care in the community, the NAS published research that showed a 2.4% prevalence of confirmed autistic spectrum disorder amongst inmates of secure psychiatric hospitals. The proportion was probably much higher in the past when institutional care was the norm.
Kanner stressed the professional status and educational attainments of the parents in his case studies. Asperger made similar observations. This is hardly surprising. Given the limited availability and the expense of social care at that time, only wealthy, educated people would be in a position to seek out an eminent child psychiatrist like Kanner rather than place their child in a state institution.
The remarkable thing is not that Kanner was seeing so many autistic children where none had existed before, but that he had the insight to grasp the common feature that united these apparently diverse individuals. Just as Down had viewed similar children through the paradigm of his time as developmentaly retarded, by the mid 1940s the time was right for an exceptional mind like Kanner’s to bring new insight to the questions these children raised.
EPIDEMIOLOGY
There are more difficulties when Stevens tackles the thorny issue of epidemiology.
Autism has spread so rapidly during my lifetime that many people are sceptical about the scale of the problem. In 1964, the year I was born, the Society for Autistic Children (now the National Autistic Society) issued an appeal through the Guardian : research suggested that there should be 5,000 people with autism in a British population of 50 million… and it could only find 2,000. Ten years later, it still hadn’t found the full 5,000.
This is a delightful story but it actually undermines Stevens’ argument. If it was so hard to find these very distinctive children 40 years ago are we supposed to believe that they did not exist; that there were actually less than one in 50,000 autistic children between 1964 and 1974? But never mind what research suggested in 1964. In 1966 Lotter carried out definitive research with the first ever epidemiological study of autism (in the English county of Middlesex). Using narrowly defined diagnostic criteria based on Kanner’s case studies, Lotter recorded a prevalence of 4.5 in 10,000. In my opinion, David Stevens would probably have met those criteria, based solely on Christopher Stevens written accounts of his son.
Lotter’s research showed that there should have been 22,500 people like David in 1964, not 5,000. And the NAS, who were probably best equipped to find autistic people, could not find a fraction of them, even after ten years of searching. I can believe that. Autism is not that obvious if you do not know what you are looking for. And it is easily misdiagnosed if you are looking for something else.
In Cumbria, where I teach, there were no known cases of autism in the entire county in 1983. Yet I can think of at least 5 children in the special school where I taught in 1983, who would have met the criteria if they had been tested. The NAS has a new campaign about autistic adults called I exist. It reports that in Cumbria the number of autistic adults known to the authorities increased by 60% between 2003 and 2006. It is reasonable to expect that a lot of these adults would have been undiagnosed children back in 1983.
Stevens goes on to argue:
Today, the society estimates there are 525,000 people with autism. American figures suggest that, among the autistic population, the proportion of severely affected people, such as my son, is four times higher than it was 20 years ago. In other words, autism is spreading like an epidemic and the worst cases are multiplying even faster.
It is important to remember that those 525,000 people are not all like David. They are not the children that Lotter was finding in 1966. In 1978 Lorna Wing, a psychiatrist who was also the mother of an autistic child and a founding member of the NAS, along with a psychologist called Judith Gould, (who, 20 years later, was to diagnose my 12 year old son with Aspergers Syndrome) went looking for Lotter’s 22,500. If we are to be strictly accurate they actually went looking for the proportion of those 22,500 in special education in Camberwell in Middlesex and found them all. But for every Kanner autistic child they found there were another 3 who were clearly autistic but did not fit the precise criteria devised by Lotter. These other children all had what Wing and Gould described as “the triad of impairments.”
When Wing and Gould published their research in 1979 autism was not even included in the diagnostic manuals of the time. Kanner’s autism was included in 1980 (DSM III). Wing’s autism (the triad of impairments) had to wait until 1987 (DSM III revised). In 1994 DSM IV finally included Aspergers Syndrome. Again, it was Wing who introduced this to the English speaking world.
CONCLUSION
- Autistics like David have been recognized since Kanner’s seminal paper in 1944. Acording to Lotter in 1966 they number between 4 and 5 in 10,000. They were clearly around in Victorian times when they were seen as a subset of the mentally retarded and not as a distinct diagnostic entity.
- In 1979 Wing and Gould confirmed Lotter’s finding and added another 16 in 10,000 who were clearly autistic but did not match the precise criteria used by Lotter.
- Subsequently Wing expanded the autistic spectrum by incorporating high functioning individuals of the Asperger type. Along with less specific diagnostic categories like atypical autism and pervasive developmental disorder - not otherwise specified (PDD-NOS) this added to the numbers by another 80 in 10,000 to give us the current 1% with an autistic spectrum disorder.
So Stevens is mistaken when he argues that:
Better diagnosis is simply a side-effect of the autism epidemic: we recognise it more easily now, because there’s so much more of it about.
The four fold increase in severe autism that happened in the UK thirty years ago (not the USA twenty years ago as Stevens stated) was the result of redefining our ideas about the nature of autism. It is not better diagnosis. It is different diagnosis.
I am aware that this blog post may seem a disproportionate response to another parent who was just expressing a personal opinion in the course of a newspaper article. But the Observer is widely regarded as a quality national newspaper in the UK. The last time they published a feaure on autism it had to be withdrawn on legal advice on account of the inaccuracies and misrepresentations it contained. Nevertheless the most pernicious of these inaccuracies - that leading UK researchers had found that there were now one in 58 children with autism - continues to circulate on the internet as a statement of fact. I offer this as an explanation and not an apology for my reasons for taking another autism dad to task in such detail. Christopher Stevens has written an insightful and honest account of raising David that deserves wide circulation. But his misleading ideas about the history and epidemiology of autism deserve to be challenged in equal measure.
March 21st, 2008
Posted by
Mike |
Autism, Autism epidemiology, National Autistic Society, Uncategorized, autism parents, journalism |
24 comments
