Ending the ‘Wakefield Winter’ and just asking ‘why?’
Next week, on Wednesday 29th January 2025, the United States’ Senate Committee on Finance will hold a confirmation hearing for Robert F. Kennedy Junior to lead the Department of Health and Human Services (HHS). If his role is agreed at the committee, the decision will be put to the full Senate and if he secures a majority of the votes, Kennedy will be able to influence the regulation of food, medicine and health practices, research and policy. The Department has a budget of $1.7 trillion, a staff of 83,000 and responsibility for the insurance organisations (Medicare and Medicaid) that provide health care for many Americans. Kennedy has been nominated to deliver his vision to Make America Healthy Again (MAHA), addressing the terrifying rates of chronic ill-health across the population. There is no doubt that the ripple effects will reach across the Atlantic and percolate debate in the rest of the world. It’s an exciting time for our growing community at The Autism Tribune.
Unusually, Kennedy is a politician who has been willing to listen to parents reporting their experiences of living with children who have severe autism. He has been prepared to ask questions about the causes of the condition, and the possible links to vaccines, food and chemicals. He knows the numbers have been going up exponentially and something needs to be done. If he secures his new role, he can prioritise funding for research to understand what has happened, including the thorny issue of the safety of vaccines. Just asking ‘why?’ will be a wonderful thing.
When our son was regressing into autism, in his second year of life (2005), we spent increasing amounts of time visiting our General Practitioner (GP, the family doctor in the UK) with worsening health complaints that needed referral to specialists. We sat in many hospital corridors waiting to see consultant allergists, gastro-enterologists and neuro-development specialists. Early on, we thought we were dealing with allergy and bowel complaints and only in the fourth year, did we join the dots and realise that these were related to his collapsing neurological development and function. We had no idea that severe autism was coming our way. No-one warned us that the early-onset allergies and bowel problems were associated with autism and if we had made the connections earlier, we would have refused any more vaccines that might have caused further decline. Indeed, The Autism Tribune has been conceived to alert our own children to the potential signs and dangers associated with vaccinating their kids, so we save the next generation from what happened to us.
However, for us at time, the most striking thing about the three years between our son’s decline and his eventual diagnosis was that NONE of the highly trained consultants expressed any interest in WHY these symptoms were happening, nor the connections between them. We came to realise that the medical profession were glorified technicians, identifying a set of symptoms, typing those into the machine for a diagnostic label and then dispensing medicine accordingly. We got a label, and at best a bag of pills and potions, but no insight into WHY this was happening. Indeed, if you asked such an impertinent question, you were advised strongly against it. More than once my GP was informed in writing that ‘Mum has been spending too much time on the internet, looking for connections that don’t really exist’. On other occasions, the question would prompt the doctor’s head to be bowed as they were no longer willing to look you straight in the eye; they had no response to the question of ‘why?’
This has always troubled me deeply. We all know that the medical students are the ones who pass all their exams and come top of the class, and once at medical school, it is the best students who become the consultants. Tax-paying citizens invest a great deal in their education, and we invest even more in the National Health Service (NHS) that is designed to deliver health care to all on the basis of need, but this investment is failing to deliver anything like health for our kids. When your child is regressing into a life-long neurological disorder like severe autism, your needs could hardly be greater, and it is then that you realise the doctors – even the specialist autism doctors – have nothing to say.
We were amazed to find that the doctors who diagnose severe autism – a lifelong disability that now affects at least 1 in 50 children in many parts of the world – are unwilling and even afraid to simply ask ‘why?’ The doctor we saw at a neurodevelopment clinic in North London in 2007 gave us a piece of paper securing a diagnosis of ‘severe autism’ and advised us to claim benefits and talk to his school about specialist help. There was nothing more they could or would do.
Our experience is the product of a top-down system of decision making that controls what doctors can do; it is a model where the doctor is a technician, acting in response to a protocol set out by machine and driven by the medicines licensed for use. However, the silence that we experience has been further enforced by the ‘Wakefield winter’ that continues to overshadow any public debate about the health of our kids.
It is now almost 30 years since Dr Andrew Wakefield and colleagues started to explore the unusual bowel disorders they were seeing in children with autism who were being referred to their paediatric gastroenterology clinic at the Royal Free Hospital in North London. In a peer-reviewed paper published in the prestigious journal, the Lancet, in 1998, they reported that some of the parents of these children associated the onset of bowel problems and subsequent autism diagnosis with the MMR vaccine given between 12 and 18 months, suggesting that this needed further research. We all know what happened next as Wakefield was pursued relentlessly, his medical licence revoked, his name discredited and his work undermined.
This ‘Wakefield Winter’ has had a profoundly chilling effect on any doctors who might want to ask ‘why?’ Akin to a nuclear winter that leaves everything dead in its wake, the vilification of Wakefield put a firm stop to anyone asking questions about the causes and incidence of autism. Indeed, it opened the door to its opposite. Rather than careful investigation into the causes of what is a devasting, lifelong disability that is affecting ever-greater numbers of children and families, with implications for the rest of society who pay for the services, benefits and loss of earnings involved, we have been encouraged to celebrate neurodiversity. The official narrative is that autism is ‘just one of those things’; we are better at spotting it and much kinder to those who are different, many of whom have gifts that bring benefits to them and us all. Asking ‘why?’ is not something to be done in polite society and it smacks of a parent who can’t face their own fate. If you were a doctor who asked ‘why?’ or raised any concerns, you would likely be hauled off to have your licence revoked, so it is little wonder that no NHS doctor has ever properly investigated what is wrong with our son.
In other neurological conditions – Alzheimer’s, Parkinsons, Multiple Sclerosis and Epilepsy – there is at least an attempt to investigate the trajectory of the condition, the impact on the patient and family, and to recognise that there are treatments that might help reduce the speed of onset and severity of symptoms. Indeed, children with severe autism have many overlapping symptoms with these other neurological complaints – failure in communication, orientation and short-term memory, odd physical movements and poor sensory processing, and similar ‘co-morbid’ conditions such as poor bowel function and allergies. However, the label of autism means none of this is properly investigated. The NHS dispatches us to the benefit office and the social services team for them to pick up the bill. There are no routine brain scans, blood tests, immunological panels or gastro-intestinal investigations. The doctors appear uninterested and us parents are left in the dark.
Next week could be the dawn of a new age when parents like us, and all the people who have been quietly trying to look at the problem without drawing attention to themselves, can come out in the light. The nomination of RFK Jnr has already changed the conversation and emboldened me to speak out. We need to join forces to seize the moment for change.
RFK Jnr’s nomination has opened up the chance of a new enlightenment and us parents need to be heard. The Autism Tribune will follow developments, willing him on. We need him to start asking ‘why?’ wherever it leads.