Insights from the bowels of the autism archive
Parenting a son with severe autism over two decades generates a very large volume of paperwork. Furthermore, I suspect our stack of paper is larger than most because we wrote letters of complaint and had subsequent correspondence about almost all the official taxpayer-funded professional services we encountered (and there have been a lot of those).
Writing the Autism Tribune has prompted me to reopen our autism archive and the contents have been shocking. I can feel my blood pressure going up just holding the letters. Re-reading them brings back a visceral feeling of trauma.
However, the documents also turn out to be a fantastic resource for telling the story of one family who were forced to live with severe autism in England in the early years of the twentieth century. The documents capture what happened to their son as he regressed into autism. The correspondence reveals their anguish at what happened, their frustration with the official failure to recognise what was wrong, and the absence of any proper response.
I plan to share some of these exchanges in the next set of posts.
For today, I want to share the most unusual exchange in the archive.
Less than a year after our son was diagnosed with severe autism with the chronic bowel problems that Andrew Wakefield and colleagues documented in their research and about which I have written before, the National Health Service (NHS) ran a public information campaign where we lived in north London. The local news magazine published by Haringey Council ran the following advert:
It told us: ‘MMR is safe. Measles isn’t.’
It urged residents to ‘catch up’ on the MMR jabs that might have been missed ‘following the scare over a now-discredited research study.’
Red rags to the bulls in our house, this propaganda campaign promoted us to write back to the state. We sent a robustly-worded letter to the Secretary of State for Children, Schools and Families (Mr Ed Balls), the Secretary of State for Health (Mr Alan Johnson), the speaker of the House of Commons (Mr John Bercow), the Chief Executive of Haringey NHS (Ms Tracey Baldwin) and the Councillor looking after the interests of children and young people at the Local Authority (Councillor Lorna Reith).
In relation to the advertising campaign, we highlighted the lie at the heart of their message. The research findings published by Andrew Wakefield and colleagues still stand: children with severe autism have much higher rates of gastrointestinal problems than neurotypical children; and this still needs further investigation, explanation and treatment. Other research backs this up, including a recent systematic review of 44 good quality studies published by a team based at King’s in London (front page below).
Written back in January 2009, our letter to the powers-that-be put it like this:
“[Rather than looking after our children] it would seem that the only priority for the NHS is to ensure that the maximum number of children are vaccinated with the MMR. Yesterday, we received an advertisement in the Local Authority magazine (Haringey) telling us that the MMR is safe and that Dr Wakefield’s research into the link between MMR and autism has been discredited. This is not strictly true. Dr Wakefield’s research was exploring the link between bowel disease and autism (and there is a clear link in the case of our son and many others) and when taking biopsies from the small intestine, he found the measles virus strain that is used in the vaccine. These research findings have not been discredited. They have not been followed up. There is now no research being done into these issues in the UK. Our gastroenterologist has not been able to explain the chronic constipation suffered by our son, nor will he discuss the link to autism. We are left having to manage the treatment ourselves.
It is dangerous for the NHS to carry on vaccinating without following up Dr Wakefield’s research and doing more to find out what causes the bowel disease in children like ours. Moreover, when you look at the small print that accompanies the vaccines used on our children there are a number of clauses that highlight the potential risks (including family history of immune dysfunction, allergies and periods of illness) that are never mentioned in publicity or consultations with health professionals. Children need to be treated with more care, and even if the vaccines are not the chief trigger for regressive autism, we need to fund proper research to find out what is behind the condition and the routes to effective treatment. At present, the lack of research means that the MMR and other vaccines are potentially risky for a sub-section of the population and the NHS has to be clear about this. Every doctor knows that there are inevitably side-effects arising from any medical intervention. To claim otherwise, is to evade the truth. Ultimately, this approach will alienate parents from medical services and the advice given by professionals.”
The two-page official response from the Department of Health (DoH) told us that in June 2007, the National Institute for Health and Clinical Excellence (NICE) had been instructed to “develop a clinical guideline in relation to the initial recognition, referral and diagnosis of autistic spectrum disorders in children and adolescents.” The subsequent guideline, published in 2009, has been featured for its failings on the Autism Tribune before and it will no doubt reappear again in the future!
The DoH letter went on to summarise the funding being made available for research before ending with the words:
“It is important to emphasise that despite the extensive independent research into the safety of the MMR vaccination, no credible scientific evidence linking MMR and autism has been found.”
There’s a surprise!
Our letter also generated an unexpected response from a mystery person called Dr Elliman a ‘Consultant in Community Child Health’, presumably working for the NHS in Haringey although there was no address on the letter and no explanation for how our letter was passed on to him. In an early manifestation of the kind of information warfare honed during the Covid pandemic, Dr Elliman was obviously being paid to manage the ‘misinformation’ (codeword for inconvenient truth) being shared in the wake of the Wakefield research.
He challenged our assertion that there were potential medical treatments that could help children with autism (such as diet) as well as the potential link between the MMR vaccine and autism and bowel problems.
He advised “caution before taking up an unproven therapy as some of them may have potential side effects. Dietary therapies can result in deficiencies … and medical treatments can have their own side effects. It is for this reason that they are not supported on the NHS.”
In regard to the link between the MMR and autism and bowel disease, he reported that the authors of the Lancet paper had changed their minds: “most of the authors then, and subsequently, pointed out that they did not say they had shown a link. They have said that, now, there is overwhelming evidence of no link and are fully in support of using the combined MMR vaccine as opposed to the unproven schedule of using the separate measles, mumps and rubella vaccines a year apart as suggested by Dr Wakefield … Unfortunately, we still don’t know what causes autism though like many conditions it is probably a combination of a genetic susceptibility and an environmental trigger.”
He then closed by sending us a copy of an article he and a colleague had published setting out the ‘facts’ in this case (front page below). He also advised us to read the books ‘False Prophets’ by Professor Paul Offit and ‘MMR and Autism: What parents need to know’ by Michael Fitzpatrick.
Few letters can have revealed so many of the problems faced by children and their parents in the autism wars.
A mystery doctor is paid to send letters to parents who have seen their precious child regress into severe autism and chronic bowel problems. He tells those parents not to experiment with dangerous interventions like diet as there are potential side effects from all possible treatments (although presumably there are no side effects from vaccines?!) He then pedals the lie that the Lancet paper asserted a ‘link between the MMR, autism and bowel problems’ when all along, the paper advocated more research to explore the potential connections. The team identified ileocolonic lymphonodular hyperplasia in the gut of the autistic children they investigated, and argued that this needed explanation and treatment.
Dr Elliman might not have read the Lancet paper to the end, but it finishes with the words:
“We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.” (Wakefield et al, 1998, p.641)
Furthermore, given that autism might well be caused by a combination of a ‘genetic susceptibility and an environmental trigger’ (as Dr Elliman puts it), this could well include an underlying Maternal Immune Activation (my atopic allergies) and the ‘trigger’ of a vaccine.
In March 2005, our son had the GSK Priorix MMR vaccine which contains:
Live attenuated measles, mumps, and rubella viruses. It comes as a powder and a solvent for injection, and after reconstitution, each 0.5 ml dose contains not less than 103.0 CCID50 of the Schwarz measles virus, 103.7 CCID50 of the RIT 4385 mumps virus, and 103.0 CCID50 of the Wistar RA 27/3 rubella virus.
Active ingredients:
Measles virus: The Schwarz strain, produced in chick embryo cells.
Mumps virus: The RIT 4385 strain (derived from the Jeryl Lynn strain), also produced in chick embryo cells.
Rubella virus: The Wistar RA 27/3 strain, produced in human diploid cells (MRC-5).
Other ingredients (excipients):
Trace amount of neomycin: A residual from the manufacturing process.
Sorbitol: 9 mg per dose.
Para-aminobenzoic acid: 6.5 nanograms per dose.
Phenylalanine: 334 micrograms per dose.
Powder: Amino acids, lactose (anhydrous), mannitol, sorbitol, medium 199.
Solvent: Water for injections.
[Important Note: The measles and mumps components of the vaccine are produced in chick embryo cell culture, which means they may contain traces of egg protein.]
Our son also had a ‘catch up’ Meningitis C vaccination on the same day as his MMR, adding aluminium (among other things) to the environmental trigger that could have pushed his immune system over the edge.
You might think this is more of a risk than removing a glass of milk from his diet!
Of course we wrote back to Dr Elliman in April 2009 and included the following words, just in case he didn’t know:
“Children with autism suffer from bowel disease (which is very well documented, see reference list below), allergies, eating problems, anxiety, sleep difficulties and metabolic disorders – all of which are related to the function of the body including the mind. While behavioural therapies may be helpful (although there is little evidence that they are being provided on the scale required – if at all), there is also a clear need for ongoing medical support.
Were the NHS to deploy more resources to supporting our children and finding out what causes autism, it would be easier for us to bear the constant efforts that are made to defend the MMR and other vaccines. As long as we don’t know what causes autism – and what is behind the terrifying increase in the incidence of the condition – we cannot be certain about the cause. There is clearly a growing body of research – most of it done outside the UK – that highlights the medical issues outlined above. There is a link to the immune system (hence the problem with the bowel, food and allergies) and there may be some children with immune dysfunction that affects their response to the vaccines. As long as the NHS, MRC and other funding bodies don’t support research into finding out what is going on, we cannot be certain about the link (or otherwise) to vaccines. If it was your child who was suffering I don’t think you would be so certain. Or at the very least, you would campaign for more funding to find out what is wrong with your child. Once our son was diagnosed and we realised the clear link to his bowel disease, we expected to find a queue of research scientists and medical experts wanting to study our child. How wrong we were. There is currently no research being conducted into the links between immune dysfunction, bowel disease and autism in the UK. This is a disgrace.
I hope you will have a look at some of the references listed below and the fuller presentation of the latest medical research and knowledge about autism that is found in B. Jepson MD Changing the Course of Autism: A scientific approach for parents and physicians (Sentient Publications, 2007). Dr Jepson is a medically-trained Doctor whose own children have autism, forcing him to rethink the received wisdom about the condition.”
Spot the academic but the letter ended with the following references that explore the relationship between bowel disease and autism:
Balzola, F et al. (2005) Autistic enterocolitis. Gastroenterology, 128, suppl 2: A-303.
Finegold, S.M. et al. (2002) Gastrointestinal microflora studies in late-onset autism. Clin Infect Dis 1, 35 (suppl 1): S6-S16.
Horvath, K. and Perman, J.A. (2002) Autistic disorder and gastrointestinal disease. Curr Opin Pediatr, 14, 5: 583-7.
Valcenti-McDermott, M et al. (2006) Frequency of gastrointestinal symptoms in children with ASDs and association with family history of autoimmune disease. Jnl Dev Behav Pediatr, 27, 2 (suppl): S128-36.
We ended with the words: “There are many more papers now outlining the clear link between immune dysfunction, bowel disease (including colitis and abnormal gut flora) and the effectiveness of diet in children. Please see the full reference list in Jepson, cited above.”
This was written 16 years ago.
There is now a veritable mountain of research evidence.
There are also many more children who have regressed into autism alongside chronic bowel problems.
They belong to thousands of families who are doubly-traumatised by their experiences of autism and the official reaction to autism.
Anyone who was serious about ‘following the science’ would do just that. They would look at the evidence in our children, listen to our experiences and do good quality research, just as Wakefield and his colleagues were doing. Taking an a priori decision that the ‘MMR is good and a gluten and dairy-free diet is bad’ is the epitome of bad science. Writing to parents you have never met to tell them they are wrong about their experiences is a shocking thing to do. Presumably, the money was good.
Best wishes to all!
Jane... Thanks for sharing your story with the world. It is vitally important that families do exactly what you have done... Expose the on-going lying and manipulation that governments in the West, in particular, engage in.Sadly, those who control we-the-peasants care nothing for autistic folks. The most important thing for them is to continue their poisoning of the planet in pursuit of eugenics goals, depopulation, and above all criminal profits. People seem to be awakening after the COVID debacle, but nothing much has changed with regards to governmental policy anywhere here in the West. The 5 Eyes are especially committed to democide of their own populations.
Until the day comes when some of the guilty are literally arrested, tried, and executed in the public square there will be no end to this.
Because of a medical condition, our son was never to have more than one live virus at a time. However, we had to fight to stop doctors giving him MMR, as several clearly didn't understand the implications and just dismissed us as stupid parents trying to prevent them damaging him further.
I'm grateful to be able to say that we won, but that was with vigilance and other doctors on our side. Your fight is so much harder as is sounds like almost the whole medical profession is ganging up against you.