In Wakefield’s wake, in perpetuum

The Autism Tribune is now 10 posts down with a subscriber list of 50 and it feels like the time to get personal.

I get an anxiety-related pain at the base of my stomach thinking about what I want to cover today. It happened twenty years ago, this month. It was late in the day, after work, on Thursday 10^th March 2005. Our beloved son was just 18 months old, and it was the day that his life – and ours – changed forever.

My husband and I had been scared about getting our children vaccinated. Our daughter was born on 7th October 1998, the year that Dr Andrew Wakefield and 11 colleagues published their now infamous paper identifying a new bowel disorder in 12 children with autism. Their paper published in the Lancet ended 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).*

The paper included parental testimony that the onset of bowel problems and autistic regression was linked to receipt of the vaccination for Measles Mumps and Rubella (MMR). The paper further included references to previous research about the established association between rubella and encephalitis (brain inflammation) in children following both natural and vaccine-delivered infection. The authors sensibly advocated ‘further investigations’ which should have been done.

A press conference was held at the Royal Free Hospital in February 1998 to publicise the research, and it was here that the media got hold of the story. When asked about the potential association between autism and the MMR, Wakefield advocated using single shots until the safety of the combined jab was fully checked out.

This triggered a media storm about the safety of vaccination in general, and the MMR in particular. It was impossible to ignore. Given that I had severe allergies as a child and our daughter was born with eczema on her eyelids that became an all-over body condition until we took wheat out of her diet, we were highly concerned. We sensibly avoided the MMR in her case, fearing what it would do to an already sensitive child.

Our son was born five years later, on 13^th October 2003. He was a tiny baby who cried much more than he should have done, from birth. However, there was no early eczema, and we stupidly thought he was more robust than our daughter had been. We delayed each of his early vaccines allowing him to have the combined Diphtheria, Tetanus, Pertussis and Polio jabs at 3, 5 and 14 months (rather than 2, 3 and 4 months as the NHS schedule required). We also refused the new vaccine for Meningitis C that had just been added to the schedule and was supposed to be given three times in the first year of his life.

However, times had changed since our daughter was small. When our son was due for his MMR, the media were engaged in a full-throated pro-vaccination campaign. I remember watching a documentary on television, fronted by a journalist called Brian Deer, who tore into Wakefield. Deer stared down the camera and into our hearts, telling us that Wakefield was a charlatan. He told us that the science was corrupt and that the Lancet paper was rubbish. Broadcast on Thursday 18 November 2004, the Channel 4 Dispatches programme was called MMR: What they didn’t tell you. It told us that there was no ambiguity and the vaccine was safe.

Not surprisingly, my husband and I started to think we had been overly paranoid. We started to succumb to the endless propaganda about the virtue of vaccines. We felt we had been selfish worrying about our own children rather than the collective good. I remember wondering how we’d feel if our son or daughter passed measles on to a vulnerable child at the playgroup or school. I began to think that there was no way the state could possibly oversee a process that disabled our kids in the way that Wakefield implied. Just as we saw during the Covid pandemic on a scale unimaginable twenty years ago, the media played on our anxiety urging us to ‘do the right thing’.

And this is why, four months after watching that documentary, on Thursday 10 March 2005, I found myself in the mis-named Claremont Road ‘Health’ Centre located on the Romford Road in east London. After much prompting from their end, I had agreed to come in for an appointment to see the practice nurse with our son. He was just 18 months old. She gave him the MMR as agreed. She then suggested adding one of the three missing vaccinations for Meningitis C as well. I was feeling anxious and weak, and had cleared fully surrendered to the great NHS. To my shame, I agreed. I remember walking home afterwards, wondering how I could have been so cavalier, so trusting that this was the right thing to do. Injecting three live attenuated viruses and associated adjuvant into a small child was terrifying enough but the nurse wilfully added another. Even then, subconsciously, I think I knew this decision would haunt me for the rest of my life. I kept the vaccine insert for his dose of Priorix (the MMR vaccine manufactured by Glaxo Smith Kline (GSK)) tucked into the little red book (oh irony) that documented his ‘health’ records, and I still have it at home.

At some point during the days that followed that fateful appointment, and I don’t have the exact date when it happened, our son came back from his childminders’ house and collapsed on my knee. I was sitting in the garden so it must have been a warm spring day. He had a burning temperature and came out in a rash. We put him upstairs in his cot to sleep and borrowed a fan to help him cool down.

Interestingly, we never even thought to go to the doctors. We also failed to connect the fever to the vaccinations he’d had. The nurse had not mentioned looking out for side effects days later, and the illness came a good while after the jabs. At the time, he appeared to recover, and we went back to the daily routine.

But nothing was routine after that viral infection. In subtle ways, everything changed. Our son started to develop a series of strange behaviours that in hindsight were all evidence that something was going very badly awry. He started walking on tiptoes and we’d laugh about him being a ballet dancer. He developed severe anxiety about very odd things like his Grandparents’ clock and a weathervane that included an iron horse on the top. He started to develop eczema on his eyelids, arms and legs. He also began to have crippling constipation that would overflow into diarrhoea and would require several changed nappies, baths and new clothes every day. He also used to wake up every night screaming in pain and distress.

This did drive us back to the health service and we spent weeks waiting to see specialist doctors at allergy and gastro-intestinal clinics. None of them addressed the root causes of the health concerns that were clearly immune related. None of them made any connection to autism. And most importantly, none of them advised against any further vaccinations, despite the evidence of immune dysfunction in his skin, bowel and behaviour.

With hindsight, these were massive red flags about the state of his health. We should have known – from my medical history, our daughter’s allergies, our son’s small size and chronic colic from birth, not to mention his ongoing allergy, bowel and behavioural problems – that something was desperately wrong. However, at that time, we didn’t know ANYONE who had autism. We had no idea that the immune problems were associated with neurological damage and possible autism. What’s more, no-one in the medical system spotted the obvious signs.

The medical practice that we were then using in North London called him in for his MMR booster in the third year of his life. We were exhausted by then. We should have known better. We should never have believed anything we were told. I don’t even remember why we said yes, but he and his sister had the booster on Wednesday 14 March 2007, when he was 3 and a half. From then on, he dropped off a cliff. He lost almost all the skills he had hung on to against all the odds. We secured an emergency diagnosis of what was obviously severe autism at a neurodevelopment clinic in North London in February 2008, when he was 4 and a half. By that time, his bowel had stopped working altogether and we really thought he would die.

Like thousands of other parents before and since, we learned the hardest way possible that Wakefield and his colleagues were right. It now seems obvious that vaccination can cause autism; our son is a textbook case of what can go wrong. It is also apparent that these effects are cumulative as vaccinated women are giving birth to babies who are relentlessly vaccinated, compounding the problem with each generation.

When it happened to us, autism was still relatively rare. We knew no-one with the condition. In 2008, our son was one of just two children with a diagnosis at his mainstream primary school that educated hundreds of kids. Today, we know that every primary school has many children with autism and the system can’t cope with demand. The rates have escalated dramatically and where we have good data, as for Northern Ireland, it was as high as 1 in 20 school-age children in 2023.** To their shame, the NHS, British Medical Association, National Autistic Society and government have no national database tracking these trends. They continue to peddle a long out-of-date incidence rate of 1 in 100 and there is a politics to denying the crisis as well as its cause.

Our family has lived in Wakefield’s wake for the past twenty years. Dr Wakefield bravely warned us about the potential risks of the MMR and everything he said has come true. Our son had the MMR twice. He developed a severe bowel disorder and regressed into autism. No one asked to examine what went wrong or explain what had happened to him. The campaign to silence Wakefield took precedence over the health of our kids. It’s hard to believe but it’s true.

This has obviously made it very hard for medical researchers to carry on exploring the connections between the bowel and autism. In the wake of the witch hunt of Wakefield there is a genuine fear that the General Medical Council and the media will carry on doing the same. Thankfully, however, there has been a slow trickle of research papers looking at the inflammation found in the gastrointestinal system of children with autism. The brilliant Arthur Krigsman and Stephen Walker recently published a summary review of this work reinforcing and advancing the findings made by Wakefield and colleagues more than two decades ago. Their paper ends by advocating for the treatment of children like ours and many children with autism are being given this treatment in other countries where the politics of autism is less poisoned than in the UK.

Over the past twenty years we have witnessed Wakefield’s wake in perpetuum. It is the story that never dies. It is the zombie public health debate that is regularly wheeled out and never put to bed. Despite the growing evidence, some of it heard in legal proceedings, the propaganda campaign continues to assert that vaccines are safe and effective, always, for everyone. Increasing numbers of us know that this is not true. There are a growing numbers of parents who are following the science, writing books and newsletters on Substack, as well as running campaigns. Reading Tracy Slepcevic on Warrior Mom, Anne Dachel or J.B Handley who has also written a brilliant book gives me hope for the next generation.

There is also remarkable change now happening following the appointment of RF Kennedy Junior to lead the Department of Health and Human Services (HHS) in the United States of America. He has promised to establish transparent ‘gold standard’ research that can calmly look at the facts. If vaccines are causing autism and/or a host of other psycho-neuro-immunological problems, then we have to pause and rethink, however hard that might be.

Whenever people ask me what causes autism, or what happened to our son, I tell them an abbreviated version of the words you’ve just read. Some look shocked, others smirk as they file you away as a conspiracy theorist, but most don’t say anything at all. I understand this only too well. The consequences of thinking this way are too hard to bear. It makes your head hurt. It means recognising the extent to which our health system is making us sick. It means recognising the conspiracy to silence people who try to speak out. It means recognising the degree to which we are all compromised in unwittingly agreeing to poison our own precious children as well as ourselves.

I still feel deep shame and guilt for allowing our son to be harmed. I have a cold anger about what the health establishment and their backers in government and the media have done to us. I also understand why people prefer to carry on in ignorance rather than listening to ‘misinformed’ people like me.

However, this story is coming for everyone. There is no escape. There are growing numbers of children with a host of immune and neurological problems and rising numbers of adults with autoimmune diseases. The fall-out from the Covid pandemic has increased the awareness that something is wrong.

The Autism Tribune was launched to share our story, build connections to people who want to put things right, and to tell the next generation before it’s too late. It makes me feel better to be able to tell you what happened to us, and I hope you will pass this on to other people who might be ready to listen. Just as Wakefield’s wake will continue in perpetuum until the truth is acknowledged, us parents need to keep speaking out until we reverse the decline in health and happiness of the next generation. It is our (rest of) life’s work.

* RETRACTED (but still available online): Wakefield, AJ et al. (1998) Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The Lancet, Volume 351, Issue 9,103, 637 – 641.

** https://www.health-ni.gov.uk/news/publication-prevalence-autism-including-aspergers-syndrome-school-age-children-northern-ireland-annual-report-2023