A Fear of Disability (part one): The roots of the anti-vaccine movement

I would like to start this blog by saying that if you’ve not done so already, get your Covid vaccine when the time comes (unless you’ve got some legitimate medical reason not to). My autism of course means I’m very sensitive to certain textures and one of them is needles. I was terrified of having a needle stuck in my arm ahead of the time, to the extent that the nurse had to calm me down. However, if you think this isn’t aiding in your anxiety towards the vaccine, here’s the catch – the jab doesn’t hurt. Like, at all. Despite all the worry its probably the most non-painful vaccine I’ve ever had in my life, which shows that while some anxieties are warranted, others are most certainly not.

This blog post will discuss a very unwarranted and harmful form of vaccine hesitancy indeed. And that is the anti-vaxx movement. While to most reasonable people the fringe mobs protesting the vaccine are ridiculous, as an autistic person I have a particular grudge against the anti-vaccine movement. Anti-vaxxers have not historically constituted a large, vocal or influential minority of the population. That is until one man re-launched the anti-vaccine movement for the 21’st century – Andrew Wakefield. I hesitate to mention his name as any attention given to this person is not deserved and I certainly will not be validating him with the title ‘Doctor’.

Still, its necessary to mention him for the purposes of showing how ableism lurks at the heart of the anti-vaxx movement and stating the point that how we talk about vaccines underlies our attitude towards the vulnerable. Its important to bear in mind that if you don’t want to get the vaccine because of some toxic rumor that you’ve heard online, you are not just failing to protect yourself, you are failing to protect people more vulnerable to this virus than you are. Whatsmore, if you want to get back to normal but aren’t prepared to aid in that by getting your jab, bear in mind that there are people on the spectrum and with other disabilities who have been isolated for over a year due to not being able to access the appropriate support. Even though everyone is offered this vaccine on a voluntary basis, for most it is a uniquely privileged position to even consider not getting the jab. It is for the sake of other peoples safety and wellbeing, as well as yourself, that immunisation is available to you. The vaccine rollout will allow us to live our lives again but as that happens, be thankful to all the people who have got the vaccine so you could resume “normal” life, including those who weren’t so often afforded the privilege of freedom before the pandemic!

With all that in mind, I would like to delve deeper into the origins of the anti-vaxx movement and in doing so examine the myths and rumors about autism which made Wakefield’s views initially appeal to so many. If you’re reading this and worried that you thought “maybe there’s something to what he says” at the time, I’m not angry – when almost the entire media is broadcasting the views of a man who has been certified an expert, I can’t blame anyone for being initially curious. All I’ll say is I hope you know better now, and I hope this blog can teach you some more about attitudes towards autistic people.

Fake Science and ‘Fraud’…

Returning to Wakefield’s now retracted Lancet-published study claiming that the MMR vaccine causes autism, many may see this as a medical faux-pas. However, a look into the circumstances surrounding the study speak of a process that was drenched in misinformation. An investigation from the British General Medical Council found that Wakefield failed to disclose that he had filed a patent for a competing vaccine, 6 months before his study was released. More than that, he was receiving money from a lawyer – Richard Barr – representing parents who believed thier child had been harmed by the jab. He wanted to prove that vaccines damaged children by causing autism but seen as there was no evidence for this, he paid Wakefield to find some. A letter sent from Barr to Wakefield reads “The prime objective is to produce unassailable evidence as to convince a court that the vaccines are dangerous”.

In the first line of the studies findings it says that “Onset of behavioral symptoms was associated by the parents with measles mumps and rubella vaccination in eight of 12 children”. There’s two problems standing out here. One is the very small sample size this is drawing from and the second is the line ‘by the parents’ – anyone can be made to associate anyone with anything if you look hard enough. If you develop a cold you’ll probably try and think of where you were yesterday that could have caused you to be infected. You’re less likely to remember people coughing near you three weeks ago. And this is a common problem in autism material – a lot of autism resources you will find online, especially that which views autism in a negative way, tends to be aimed at distressed parents. That is the case with bloggers who write about how to deal with an autistic child and its also the case for people who try and sell pseudoscientific cures. My argument is that this study weaponized parents uncertainty by getting them to associate the child’s autism with the MMR vaccine as a cover for proper scientific analysis, or investigation.

Lines like “he received a dose of the MMR vaccine…the day after which his mother described a striking deterioration in his behaviour that she did link with the immunization” speak of a deeply opinion led process, based off a preexisting bias towards wanting to ‘blame’ something for the autism. The study also details how long the parents noticed autism symptoms after the jab. Unsurprisingly, it’s days, single weeks and even hours. I daresay that some of those parents were looking for autism in thier children more closely considering the hysteria surrounding Wakefield’s report. I bring this up because when you hear the ‘first symptoms’ of autism being mentioned, bear in mind that its from someone’s perspective and not a way to measure how long someone has had autism or where the autism came from. Typically, signs of autism become noticeable at around twelve to eighteen months. However, if you want to blame external factors for causing autism, playing around with parents perception of time and what they remember in order to get them to blame what is in the case of the MMR vaccine, a coincidental event, can be persuasive. Another parent in the study blames thier child’s autism on an ear infection and you don’t hear that being debated or considered legitimate.

The study even admits at the end that it dosent prove that there is a connection between the MMR jab and autism, but the sheer existence of the study mixed with the speculation that the jabs ‘might’ cause autism was enough for Wakefield. By admitting that he hadn’t claimed to prove anything, he could then speculate wildly. For example, each of the children in the study appeared to have non specific bowel disorders. Wakefield takes this collection of vague disorders and concludes “We have identified a chronic enterocolitis (inflammation of the bowels) in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after the measles mumps and rubella vaccine. Further investigations are needed”. To clarify, these uncertain, deeply speculative theories are his conclusions! If the kids each had different bowel disorders than there wouldn’t be a clear link to the vaccine but if they each had a new, novel bowel disorder, Andrew Wakefield could argue that they were all caused by the same thing. He even went as far as to sack two separate doctors who ruled out colitis in over half of the children before writing in his report that 11 of the 12 children had similar inflammation. In effect, he ignored everyone on his team who disagreed with him and decided by himself to invent a new gut disorder that causes autism!

What the evidence said…

Content Warning: Abuse, Medical Procedures

In investigating Wakefield’s work, the journalist Brian Deer – who obtained the medical records after Wakefield himself tried to sue the journalist, only to have the judge rule that the records were evidence in the case – showed the parent of patient 11 what the study said about their child. In a correspondence with Deer the parent noted that

“The Lancet article indicates that autisitc symptoms started at 15 months, a week after the MMR vaccine, which is completely inaccurate…the bottom line is, if my son is indeed patient 11, then the Lancet article made a false assertion that his symptoms set in immediately after the MMR in service of some attorney’s efforts to prove ‘causation’ that apparently drove this research”

Parent of Patient 11

He wasn’t the only parent who was lied to. For the study to be legally useful there needed to be something of a clear link between autism and the vaccine. According to the medical records, most of the parents never said that thier child starting showing signs of autism within the time period of 14 days after they vaccinated, despite the study claiming that they did. Most of the symptoms either started far too late to be useful in the lawsuit or far too soon. Wakefield changed the allegations of the parents so the paper said what he needed it to say. This is despite his constant assertions that he was ‘listening to the parents’ and representing their interests. Furthermore, all of the children in the study had obviously been diagnosed with autism, right? Well, no, actually. Child seven was never diagnosed with autism. Child 12 had also never been given an autism diagnoses. If this sounds absurd to you, rest assured, I was also shocked to find out that some of the people alleged to be autistic, in a study claiming to show a link between vaccines and autism, weren’t ever given a diagnoses! That said, I hope you can realise the depth of Wakefield’s lies in this in that nearly everything surrounding his study was either fabricated or exaggerated, just so he could make money from the innate ableism of a small group of parents and in doing so spread this prejudice far and wide.

Somehow though, for as angry as all of that makes me, the lies weren’t the most infuriating part of his study. In his efforts to link autism and bowel disorders, each child went through a range of dangerous procedures designed – he told their parents – to find that link. The children spent a week at the hospital during which time they were given laxatives’ and sedated as well as being given colonoscopies, having needles injected between the bones of their spine and having wires run through their head. On the consent hand-out Wakefield provided for parents, none of the risks of any of the procedures are mentioned. As a result, one five year old autistic boy was given a colonoscopy that caused his bowel to be perforated in 12 places during the procedure, resulting in lifelong disabilities that require full time care. Another child’s lumbar puncture went incredibly badly, meaning he had to be rushed to a different hospital for treatment. These children were subjected to incredibly risky and invasive procedures for no reason other than satisfying a now disgraced ex-doctor’s need to appear credible which he needed to sustain a profit motive. If you’re supporting Wakefield you’re not only supporting someone who is ‘in my opinion’ a lying conman, but someone who ‘might have‘ been guilty of child abuse. In another harrowing and creepy story which Wakefield used to tell himself, at his son’s birthday party he lined up all the other kids and offered them five pounds each for samples of their blood, so he could compare the blood of ‘normal’ children with that of those he claimed had ‘autistic enterocolitis’. Let that be testament to this man’s trustworthiness, or lack thereof.

It was all very clever in a sickening sort of way. A group of parents who thought vaccines might cause autism, payed a lawyer to represent them who then payed Wakefield to write those opinions in a study, using the link of ‘enterocolitis’ as a lynchpin to produce the ‘evidence’ the lawyer needed. To reach these findings, Wakefield was prepared to go to extreme and deeply immoral lengths. Perhaps the only thing more vile than that is that his theories still hold sway for a more significant number of people than I care to think on. I will focus on that more in future blog posts but for now, let me introduce the discussion…

A high profile example…

Upon learning that they have an autistic child there a few reactions parents can have – while we hope the condition will be met with acceptance, its likely that there will be a degree of uncertainty that comes with that. Every parent has hopes and ambitions associated with thier child. So upon learning that thier child is different comes uncertainty about thier future, and with that the desire for an explanation for why thier child is this way – something not helped by an unhealthy lack of education about autism, either in the media or in education. Its easy to see how then many could have been convinced by someone offering to explain why autism happens.

Today the anti-vaccination movement weaponizes the lack of public knowledge about infectious diseases and vaccines, combining that with existing fears of imposing governmental powers. A 2016 documentary produced by Wakefield titled ‘Vaxxed: From Cover Up to Catastrophe’ argued that vaccines are a result of a larger government conspiracy to make children ill to sustain a medical-industrial complex. That same year Donald Trump stood on a platform with many other republican party candidates vying to stand in the presidential elections, and stated his view that vaccines caused autism. It’s worth pointing out that his administration presided over an alarming number of measles and mumps outbreaks, driven in part by vaccine hesitancy. This is quite a common trend. Vaccine hesitancy increased after Wakefield’s paper which proves what a powerful tool information, or indeed disinformation, can be in public health.

In 2016, Wakefield was one of four anti-vaccine campaigners who met with Donald Trump. The disgraced doctor turned conspiracy theorist also attended one of his inauguration balls, after he defeated Hillary Clinton in the presidential election. After he entered the White House, Trump is said to have considered appointing another vaccine sceptic, Robert F Kennedy, to head a commission to look into their safety. I am stressing this because vaccine skepticism is often seen as a fringe movement, yet its important to see the idea as having potential to be far more influential and dangerous.

“Despite the fact that his findings were found to be fraudulent, the paper was retracted and that Wakefield was struck-off the medical register for dishonesty, the damage was done. Public confidence in MMR and vaccination has never fully recovered, at least not in developed countries. This was made evident by recent news that the number of measles cases in Europe increased by 400 per cent in 2017, with more than 20,000 cases and 35 needless deaths”

Seth Berkley, Global Alliance for Vaccines and Immunization

Trump’s view might have been driven in part by his business friendship with Bob Wright – former chairman of NBC and founder of ‘Autism Speaks’. Remember what I said about many parents fearing for the future as a result of an autism diagnoses? This is fed into by organizations like Cure Autism Now and Defeat Autism who emphasise the ‘tragedy of disability’. Autism Speaks’ 2015 marketing campaign proudly stated their aim to create a world where “no family has to live with autism” this reinforced to many parents and ASD individuals that eradication of the disorder was the penultimate goal, which set them apart from the many other advocacy organizations. This is a conflict at the heart of disability politics….

An Atypical Perspective…

This discrepancy between people who view autism as something scary to be explained or else cured, and people prepared to accept autism as a positive neurological difference points to the rift at the heart of discussions around the condition: the ‘medicalized’ view that states that autism is an affliction to be treated and cured, and the ‘neurodiversity’ advocates who say that the disabling aspects of autism lie in how society behaves towards us. Many parents were convinced by Wakefield’s deeply medical view of autism, that being that the condition was caused by vaccines. In instilling people with this fear he created a movement that only works to reinforce the factors which cause autistic people to struggle – job market discrimination, inaccessible language, poor mental health funding. He did this, by portraying ASD as a disease and by extension something to be feared. My argument is that as long as this stigma exists you are going to have conspiracy theorists claiming to know what causes autism. If we want to get rid of those ideas we have to get rid of the far tamer yet no less dangerous view that neurodiversity requires and explanation, and deserves to be treated as a problem.

In my next blog post we will look at the media and the role of journalists in discussing autism and vaccines.

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