Long ago, I watched a young man create an elaborate ‘cat’s cradle’. It involved perhaps a half kilometre of twine, stretched from cupboard door to cupboard door, rendering the kitchen unusable during its construction. It was breathtakingly beautiful in its appearance, an anachnidal grand design, and required the foresight and mathematical skills of a chess player to reach its successful conclusion.
From the other side of this web, the young man’s Mother explained to me that this creation was re-made every single day. Every night she would carefully unwind it, roll up the twine in readiness for the new dawn – and finally be able to access her kitchen again. She cooked at night, whilst her son slept; a microwave lived in the garage, to reheat the meals for her family.
She wasn’t complaining, merely explaining why we were separated thus.
You are unlikely to have met her; she and many, too many, others like her have no time to attend the Mother and Baby groups, nor spend time in the golf club. They never get down to the local pub; they have no time for social gatherings.
They are the unseen, the unheard. The full time companions to the army of young people who arrived home from the maternity wards full of vigour, lusty of lung, demanding of attention, but who are now condemned to a lifetime of suspicion and mistrust from the general public due to their unusual thought patterns and ways of relating to the world.
They are the autistic children of Britain. Neither medically nor physically – albeit that some have additional problems – requiring of professional care, merely oceans of patience, quiet understanding, perseverance and protection. Those who have grown to adulthood require an additional talent – that of strength. It is no mean feat to persuade a strapping six foot son to bed or away from danger of which he is unaware.
The young woman I was talking to, had hope though, there was, she told me, a Doctor, a Dr Andrew Wakefield, who had apparently discovered evidence that their was a link between the triple vaccine (MMR), bowel disease, and the autistic condition of her child. Her son had been developing ‘normally’ – for want of a better term – until he had been immunised. He was part of the horrific increase – from 1 in 2000 when the MMR vaccine was introduced in 1987 to an incredible 1 in 64 children denoted autistic in the UK today.
She was hoping to join a group bringing action against the government for the damage she believed was caused by the MMR vaccine. The result she hoped would be worth more than money, which was not her objective – she wanted Dr Wakefield to be funded to do more research. If there was a provable cause, there might be a cure.
‘Cure’ is an dangerous word in the world of autism – there is a strong body of opinion which rejects any notion that autism requires ‘curing’, it is a ‘difference’ an ‘otherness’ which only represents a problem to those of us not so blessed, and we have no business trying to cure ‘differences’.
That is an ideological viewpoint that I am only prepared to accept from those who also walk in that young Mother’s shoes. If you do walk in her shoes, and that is your viewpoint – then respect, I salute you. However, I also have profound respect for her desire for her son to take an easier path through life and be able to live amongst and communicate with the majority of the population without the heavy burden of ‘otherness’.
The main stream media took up the cause of Dr Wakefield. First he was a hero, a popular story line for them to run; then the forces of establishment came down on him. There was visible panic amongst the medical hierarchy – measles was on the increase in areas of the country that had taken heed of Dr Wakefield and refused the government immunisation programme. Despite his initial paper being peer reviewed by 13 co-authors, and merely calling for ‘further research’ into a possible link, the BMC removed the license to practice from Dr Wakefield and Professor Walker-Smith on the grounds that there was a flaw in the paperwork for ethical approval of his studies.
None of the parents involved in that study made a complaint to the GMC, the only submission was from Brian Deer, a journalist for the Sunday Times, who has written several disparaging articles regarding Dr Wakefield. Today the British Medical Journal proudly trumpets Brian Deer as author of its leading article which now claims that the entire affair was a ‘deliberate fraud’ on the part of Dr Wakefield. A cry which the main stream media have taken up with alacrity, turning 180 degrees from their original stance. Houston, we have a new headline!
I have no idea of the cost of those GMC hearings, or of the research that went into discrediting Dr Wakefield, or of the cost of lost hours of training and experience in removing those two Doctors from practising. I do know that if a fraction of that money had been spent on discovering why 1 in 64 children is now blessed with autism, rather than in discrediting a call for more research into a possible causal link – that young woman facing the rest of her life watching a fine young man create cat’s cradles all day would have been much better served.
Dr Wakefield’s research has been called ‘a cruel hoax’ – the cruellest hoax of all is that no one appears to care what the cause is, so long as it is not the products of Aventis Pasteur, SmithKlineBeecham, or Merck.
SBML is the landlord of the Raccoon Arms. He lives North of Watford and has an eclictic range of interests from Science and Technology to Politics including Woodwork and Genealogy. His political viewpoint has evolved from being a student demonstrator to more liberal views and has now seen the light in Libertarianism.
{ 26 comments }
Have no knowledge or expertise in Autism whatsoever, however recognise the smear and discredit tactics of the powerful.
Science should pit opposing medical views to carry our medical research to find ‘the truth’.
Think of the man who declared that the earth revolved round the sun, not the otherway round. Rich and powerful interests said otherwise. So the sun continued to revolve the earth in the minds of frail men.
Sorry to pull you down a peg on the flat Earth bit. The Earth has been thought to be a sphere even since Plato’s time. It’s only a few religious nuttters who thought that the Earth was flat – mainly based on the idea that Hell was below the Earth and you can’t have that with a sphere.
“Science should pit opposing medical views to carry out ….. research to find ‘the truth’.”
Applies for alleged “Global Warming” too.
Should be ““Science should pit opposing … views…”
“…there is a strong body of opinion which rejects any notion that autism requires ‘curing’, it is a ‘difference’ an ‘otherness’ which only represents a problem to those of us not so blessed, and we have no business trying to cure ‘differences’.”
Sounds very similar to the ‘deaf culture’ philosophy inthe States (and here too, though not to the same degree), which holds that surgical intervention to allow children to heR again should not be carried out.
How this could not be child abuse is beyond me…
Drug companies are totally immoral. My ex-wife was once interviewed for a job with one of the “giants” and was told blatantly that this was no position for a bleeding hearted liberal as the department was in the business of flogging out-of-date drugs repackaged for the third world. She walked out.
The Penguin.
For some reason big pharma is allowed to add mercury to its vaccines in the form of thimerosal. Mercury is well known to cause neurological damage – yet any attempt to investigate this through proper medical research has now been effectively banned. One feels that any interference with the continuing massive profits of the industry will not be tolerated.
It was also interesting that Tony Blair refused to confirm or deny that his child received the triple vaccine – I personally did not feel that this in any way conflicted with the child’s right to privacy.
This is simply not true. There have been multiple in vitro and in vitro studies in multiple countries assessing the relationship of ethyl mercury ( a compound different in make up to Methyl mercury) to child development- not that this matters because there is no ethyl mercury used in vaccines since 2003 and never was in MMR. Some flu vaccines have it now for adults but you just for a thimersol free version.
Nicely written piece. Having personal experience of long-term caring and an awareness of autism & caring for the autistic, it pressed several buttons. The residual scientist in me still found something missing though.
Ben Goldacre covered the topic pretty well from day 1, from a scientific perspective. His MMR tagged items are worth a look, maybe starting with
http://www.badscience.net/2008/08/the-medias-mmr-hoax/#more-772
When I was a child at nursery and primary school age, I was believed to be subnormal by some teachers, and autistic by others. They would often ask my parents if there was something wrong with me.
What didn’t cross their minds was the obvious truth, which I assumed they could see. The reasons I didn’t want to mix, didn’t want to play crap school games, didn’t want to do lessons and was first out of the door at the end of the day, was because I hated school and it was doing me no good. I could already read and write, do any necessary maths for daily life, and I wanted to be at home with my own toys, playing in the garden and mixing with other kids when I, not the school, felt I wanted to play.
Society therefore does, I agree, use destructive labels on many that shouldn’t be labelled, and interfere with its science in many cases where it should not have any business doing so.
My view is that there isn’t a proven link between MMR and Autism. There are too many other variables that could be causing Autism. I’m always aware that causation is not correllation. And a study of 12 children does not translate to the whole world.
For instance the huge amount of VOCs released from air fresheners is ignored but people are extremely concerned about the VOCs let off from paint. There are loads of other new chemicals used in the modern world which could be causing Autism and other health problems. Or it could be due to changes in society. Or it could be due to diagnosis – when it becomes worthwhile to have an Autistic child because you get money from the government then it wouldn’t be surprised to find an increase in the numbers of Autistic children. The rise in dyslexia is possibly due to this reason.
As Ben goldacre’s article states, if the UK is in all a tissy about MMR/Autism why isn’t the rest of the world doing something about it. Only in a few countries,. mainly UK, USA, and Japan has there been a big press scare over it. He also states that there are many health scares like Wakefield such as one in France which thought there was a connection between the hepatitis B vaccine and multiple sclerosis.
That said just because Dr Wakefield’s study was picked on by groups wanting an answer autism and blown out of proportion shouldn’t be blamed on him and have his medical license revoked. His study was small and minor and ignored initially, but after a few years suddenly went viral and became the answer to everything Autism related. It wasn’t even a proper scientific study, only an analysis of their case histories. It didn’t actually look into the whether or not there was proof or not of a link, though Wakefield did do a further study later on DNA from measles appearing in Autisitic children which was widely derided as wrong.
Declaring his study fraudulent has only been done to cover the arses of those in the BMA who backed him initially and don’t want to be exposed for following the line from the campaign groups without thought, and the arses of those in the pharma industry who used the study for their own purposes.
MMR is counter intuitive though isn’t it? How often does the human organism fight more than one virus at a time? I have never heard of anyone getting measles and mumps at the same time. To me it is like feeding cow brains to cows. Cow brains as food for herbivores?
I bitterly regret giving the MMR to Calfy. She developed all sorts of allergies straight afterwards and, weirdly, stopped sweating for four years, which made throwing off a fever a problem. Her best friend developed petit mal afterwards. Another friend’s child became autistic.
It doesn’t even “protect” the children from the diseases itself. Calfy got mumps aged 17. Weirdly, she seemed stronger afterwards. Perhaps we need to have these diseases to form a strong immune system? I fear that we will have more young adults dying from measles complications in the future.
From the minute a baby leaves the sterile womb it is assaulted by thousands of viruses and germs. The MMR is inconsequential to what they deal with every day successfully. The MMR just shows the immune system what the virus would look like – it does not give the child the virus as such. You have also pointed out why it is so important that all children immunised – it is not 100% effective (although the child will get a lesser event of the virus becuase the immune system has already been exposed by the immunisation). If the rate of immunisation drops in the community the virus will move through it and babies too young to be vaccinated and the immunocompromised are at great risk.
I also think the rise in asthma is connected to mass vaccination.
Interesting. I’ve put down the rise in asthma to the increase in cleanliness.
Everything must be cleaned with products that kill 99% of germs now. When you have “How clean is your house” taking a sample and saying “OMG Strep XYZ is in the millions” they are making a scare story out of not much. They don’t say that many strains of Strep are normally found in our guts and are beneficial. They don’t say that many bugs are only dangerous if you are poorly already.
Babies are brought up to be antiseptically clean 24/7. The human body is designed to get bugs when young as it makes them stronger. That does mean that some children die young but that the brutality of evolution – weed out the weak. We have become so scared of losing a single child that we have become cleanliness obsessed to the point where we now get diseases later in life because we weren’t protected when young.
That too could be a factor.
@annaraccoon2010 u seem unwilling to answer my q about mental incapacity?
http://www.ncbi.nlm.nih.gov/pubmed/15877763?dopt=Abstract
Sorry, Anna, no. I have to disagree with you on this one.
I have a dear son, who is 11 years old going on 12. If you do the arithmetic, that means he was due for his MMR vaccine just as the Wakefield story was headlining. So this issue is of deep personal interest to me.
We went through hell during those months. My wife was faced almost daily with other mothers who were united in their abject fear of the MMR vaccine and their determination not to allow this evil poison to be injected into their children. The media maintained their hysteria, asking scientists to prove the lack of an MMR/Autism link and holding up Blair (of all people) as the arbiter of medical fact and scientific probity simply because he had a similar-aged kid. Proof of a non-link being (of course) impossible, the media then latched onto the measured and cautious statements of responsible scientists and used these as “evidence” of a cover-up.
Meanwhile, Wakefield was everywhere. With respect, he was not “merely calling for ‘further research’ into a possible link”; he was in the media saying there was indeed a link and something should be done. Specifically, he was advising parents not to take the MMR vaccine. Set that against a scientist explaining that Wakefield’s research was not conclusive and that other studies do not report a link and – in the media’s eyes – Wakefield was the winner in every interview.
There was just one flaw in Wakefield’s call to avoid the MMR vaccine; it was rubbish. I only have a first degree in science, but as the media were failing to look at the issue scientifically I decided that I had to. I followed up the sources quoted for every MMR story and realised that they all lead back to just the one small study – something that the media was not making clear at the time. I looked at the scant details of that study that were generally available to non-scientists and realised that it provided no scientific basis whatsoever for reaching a conclusion.
Despite this clear and obvious fact, Wakefield was still up and around everywhere, giving interviews, warning of the dangers of MMR, saying he had scientific proof, and calling for more research funding. I reached four conclusions from my work, without any help from “the establishment”:
1. That there was no evidence of a link between MMR and autism,
2. That there would, in a few years, be a surge in measles, mumps and/or rubella cases, a risk that I assessed as far more serious than the unproven risk of autism,
3. That Wakefield was a charlatan, and
4. That my son was having the MMR vaccine, come what may.
And, in case you are wondering, yes I do know what autism is like. A neighbour has a seriously autistic son, and pretty well every male member of my family has at some point been described as being on the autistic spectrum. But we cope, far better than we would cope with measles.
The story of MMR, autism, and Wakefield is a terrible one, in which there has been great suffering. But I have to say, the suffering has been on the part of the parents whose children Wakefield studied and who Wakefield gave such false hope, the parents whose children developed autism and who were made to feel that they were in some way responsible, and the parents who shunned the vaccine and who saw their children fall ill with a disease for which they (and Wakefield) were responsible.
Right, let us separate a few issues here.
I am no supporter of Wakefield. I have nothing but sympathy for those who were – when you are dealt such a difficult hand in life it is hard not to cling onto any hope.
You say:
“Meanwhile, Wakefield was everywhere. With respect, he was not “merely calling for ‘further research’ into a possible link”; he was in the media saying there was indeed a link and something should be done”.
That is indeed true, and that is partly what I take issue with I said, “The main stream media took up the cause of Dr Wakefield. First he was a hero, a popular story line for them to run; then the forces of establishment came down on him.” – then when they saw that was an unpopular line with the government they ran the other way.
However, the GMC ruling was nothing to do with what he had said in the papers, assuming he was even correctly reported – it was to do with the ethical permission for that original research.
You say – “the suffering has been on the part of the parents whose children Wakefield studied and who Wakefield gave such false hope, the parents whose children developed autism and who were made to feel that they were in some way responsible, and the parents who shunned the vaccine and who saw their children fall ill with a disease for which they (and Wakefield) were responsible.”
And that was precisely the point of my headline – “the cruellest hoax of all”, for they are the people who suffered and are now forgotten.
The papers filled their columns, the advertisers got their hits, the GMC dealt with two doctors who they could prove had conducted shoddy research, Big Pharma breathed a sigh of relief, and the papers got another story – and all the money and all the effort that went into that could have been spent finding out exactly what was going on and why there is such a rise in Autism.
I don’t quite see where we are in disagreement to be honest?
Me neither.
But the problem with the Wakefield/MMR story is that, by now, (especially for newcomers) it’s like the JFK assassination or the Moon Landings – what people believe is now so far entrenched that no amount of new information is going to be accepted, because it comes from ‘the enemy’.
At this point, it’s like the Hatfields and the McCoys – everone’s a’fussin and a’feuding and a’fighting, but no-one quite remembers why, or how it all started in the first place…
Anna, I have to say that on reading your post I took it as a defence of Wakefield, that he was standing up to the Establishment and was squashed because he put profits at risk etc etc. I see at least one reader of my blog did, too, so if there was a mistake there, perhaps it was not on my part.
The GMC ruling was on the medical ethics issue, which you referred to as a “flaw in the paperwork”. I think that was the comment that send me in the direction it did. The ethics clearance for a medical trial is essential to its scientific status; it ensures that the trial is scientifically valid & useful, and is the permission for the trial organiser to (literally) interfere with the participants, to carry out procedures that are not entirely directed at making them well. It is quintessential. Without it, the doctor is guilty of a conflict of interest, and possibly assault. To operate outside of it is the work of a charlatan.
So the GMC were faced with a straightforwardly provable issue of serious scientific malpractice (not a missing paperwork issue), or a vague and difficult to prove issue of bringing the medical profession into disrespect. I’d say their decision to focus on the ethics issue was spot on, therefore.
That’s one nub of disagreement for us.
The other is, I think, highlighted by your comment “Big Pharma breathed a sigh of relief”. And well they should; there was nothing wrong with their vaccine. Big Pharma had (in this instance, at least) done nothing wrong. Now, I’m not one to bow down before huge interests; I don’t do it on this blog and I don’t do it in real life. But sometimes the big guys are right. Sometimes they are trying to help.
Otherwise, yes we do seem to be in agreement, more than I originally thought.
Patently – I totally identify with your story. I too have an 11 year old son and went through exactly the same rollercoaster of emotions that you describe. In addition I have a 19 year old daughter with Asperger’s which is one of the Autistic spectrum disorders and I have a friend with a severely autistic son and know how terrible it can be.
I should add at this point that I am a medical doctor and consulted several GP friends to seek advice. I also went though all the medical literature that I could lay my hands on.
My GP friends split into two groups – those whose children were older and beyond MMR said go for MMR there’s no problem; the one with a child the same age as mine was more equivocal. In the end we had my son vaccinated with MMR and he is fine.
In the intervening years some of the missing pieces have been filled in with large well conducted clinical studies that have been unable to demonstrate a link between MMR and autism. That is the wasted opportunity cost – just think what might have been achieved if the money had been spent on autism research.
I urge all of you to read the BMJ article and editorial – it’s free at http://www.bmj.com – if only part of what is alleged is true – it is truly shocking
Thanks. My son is fine, too. Well, he’s no more autistic spectrum than I am, which I shall define as “fine”!
I looked at the BMJ article, and am equally shocked. I reached my conclusions about Wakefield at the time, and derive no satisfaction at all from being proved right.
I find it hard to come to any opinion about the Wakefield controversy; in particular, it’s impossible to prove a negative like “there isn’t a link”. The establishment “nothing to see here, move along” raised my suspicions strongly at the time, and Tony Blair’s secretiveness made it worse: did he know something that was being kept from the rest of us? Probably.
But two things bother me.
First, whence comes this enormous rise in the incidence of autistic spectrum disorders? Is it ALL due to better diagnosis? I think not, because in my youth such children were unheard of, and 1 in 64 couldn’t have been hidden away.
Second, why bother with MMR anyway? Again, in my youth we all got measles, an unlucky few got mumps (not very pleasant, but hardly life-threatening) and we made sure that all little girls got rubella, which pre-puberty is so trivial you hardly know you have it. I don’t remember anyone dying. So why the big fuss?
Tony Blair really didn’t help at all, but then I suppose even he is entitled to some privacy. I am pretty sure that the rise in apparent prevalence of ASD is due to greater willingness to look for and diagnose it. In the past some of these children would just have been considered odd or badly behaved – and there are plenty of adults who are odd or badly behaved without ever having had a diagnosis of ASD. With an early diagnosis it is possible to help these children to understand their condition and integrate better into mainstream society – the earlier the better
Measles can be fatal especially in immunocompromised children/adults, so the greater the level of herd immunity the better they can be protected. Mumps is unpleasant and can lead to infertility especially in males and rubella causes birth defects as we all know. Like you I had them all as a child and suffered no long term effects, but not everyone will be so lucky. Incidentally I had measles and chicken pox simultaneously – my younger brothers got them subsequently a week apart due to the difference in incubation periods