News! I’m back at uni this year starting a Master of Autism and Neurodivergent Studies. This degree will take me a few years part-time and it’s entirely online, with all lectures and tutorials via Zoom. I managed all the new portals and platforms and registrations OK, and my first tute started really well. But then it veered horribly off the rails.
The lecturer was describing models of disability: the charity model, the social model and so on. When he asked us to share in the text-chat some of the ways that disabled people are ‘othered’ in society, I made a terrible mistake.
‘Inspiration porn?’ I offered in the chat. I watched the lecturer do a double take before he said ‘I’m just going to delete this comment from Rachael. It’s highly inappropriate.’ He paused, momentarily lost for words, and then cleared his throat. ‘Moving on.’
‘Inspiration porn’ is a term coined by the brilliant late activist Stella Young. It describes the common trope in which disabled people are objectified and pitied. ‘You are so amazing! I could never!’ It sets people with disabilities apart, inferring ‘exceptionalism’ onto them. It’s a patronising position. But not, it seems, as common an idea as I had thought.
As I stared with horror from my little Zoom thumbnail, I realised that the tutor thought I was referring to actual porn. And, somehow worse, offering it as a question, like I wasn’t sure? How are disabled people treated differently? Maybe in porn? I sent my tutor a private message attaching Stella Youngs famous Ted talk, and made sure, next session, to fade very carefully into the background.
You can watch Stella’s TED talk here:
Other than that the course is -so far - fascinating. I love feeling my think-machinery creaking into gear, and it’s also the first time I’ve tried to study since my ADHD diagnosis, which I think of as the moment I received the correct operating manual for my brain.
I’ve been reading about ‘mythology’ in the field of psychology, and thinking about Robert Kennedy Junior: host of a brain-worm, lover of dead-bear pranks and now head of the largest, most powerful governmental Health Department in the free world. RFK’s aim is to ‘Make America Healthy Again’, but his approach involves suspicion, if not outright hostility, towards science in general and vaccination in particular.
In this moment, the idea of myth-making as it applies to health science feels particularly important. When America sneezes, after all, the germs float over the the rest of the globe. I thought I’d dig a little today into the long-debunked, yet mysteriously sticky myth about the link between vaccines and autism.
Oh, we love a myth, humans. We are meaning-making machines, and we love to tell ourselves stories that explain the confusing bits of life. The thing about myths is that over time, regardless of their connection to reality, myths can root, take hold and become ‘truths’.
Autism has long been subject to this kind of myth-making. The idea that its roots lay in cold ‘refrigerator mothers’, for example, stuck around for decades. (Get in the bin, Bruno Bettelheim.) But the most famous autism myth is that it can be caused by the MMR, or the Measles, Mumps, and Rubella vaccine, which is given to children in late toddlerhood to - very effectively - inoculate them against these infections.
In the late 90’s a doctor called Andrew Wakefield published a paper in medical journal The Lancet in which he claimed that apparently ‘normally developing’ children were presenting with symptoms shortly after they had received the MMR. It was catchy and simple, and people loved it. Politicians got on board! The press got on board! Celebrities got on board!
It wasn’t until 2005 that an investigative journalist exposed the many flaws in Wakefield’s sloppy methodology. The Lancet retracted the article, Wakefield was told to get in the bin by the British Medical Association, and since then, literally dozens of research studies have conformed that there is no connection between the epidemiology of autism and the biological effects of the MMR vax.
Still, it persists. So why is the myth so sticky?
A good, sticky myth - what researchers Lilienfeld and team called a ‘cognitive illusion’ that fools the mind rather than the eye - has to hit a few targets that they call ‘errors in thinking’. It should have good ‘word of mouth’, which relies on catchy phrases or soundbites (the Twitter effect) and address the ‘desire for easy answers and quick fixes’ - particularly likely in situations where problems are tricky or frightening. It makes use of ‘selective perception and memory’, when we zone in on ideas that support our beliefs and filter out ideas that contradict them, and it can be shaped by ‘misleading film and TV portrayals’, and helped along by ‘exaggerating kernels of truth’: since our belief has at least some connection to fact, it can seem legitimate.
Our tendency to ‘infer correlation from causation’- to assume that one thing causes the next - is perhaps the most pertinent one in terms of the link between the MMR vaccine and autism. The MMR vax is administered to 12- to 18-month-old children; exactly the age at which the behavioural symptoms of autism often start to become visible. So the error in thinking called ‘post hoc, ergo propter hoc’ reasoning (stay with me) is when we think that because one thing happens first, it causes the second thing.
Hupp and Jewell devised a criteria for a really sticky myth:
A lot of people have heard the myth.
A lot of people currently believe the myth.
The myth sounds true and is believable.
The myth is supported by some professionals (or pseudoscientists).
There is a great deal of scientific evidence to contradict the myth.
Peoples belief in the myth can cause harm and
The myth discourages the use of another scientifically supported practice.
Importantly, these myths cause harm. Widespread myths about the danger of vaccination have directly resulted in lower vax rates and deaths. A child died of measles recently in West Texas in the biggest outbreak the state has seen for thirty years. Even after their child’s death, in a testament to the stickiness of anti-vax mythology, her parents reportedly stated that they still believe in ‘refusing the shot’ because ‘measles are good for the body.’
RFK has called vaccinations ‘criminal medical malpractice’, and in 2024 he was listed as one of the ‘Disinformation Dozen’ by the Center for Countering Digital Hate, who named this group as ‘responsible for almost two-thirds of anti‑vaccine content circulating on social media platforms.’
RFK is emblematic, in some ways, of the growing distrust of research and scientific inquiry, and the ‘wellness to conspiracy theory’ pipeline. It’s not just theoretical. In 2018, two infants in Samoa died in an accident while nurses were preparing the MMR vaccine, after which the Samoan government temporarily suspended the vaccination program. In came RFK, at the time the head of the anti-vaccine non profit organisation Children’s Health Defence (perhaps the cleverest bit of branding since anti-abortion activists snaffled ‘pro-life’). Across the island, the organisation spread false information about vaccination and in response, there was a drastic decline in vaccination rates. The following year, a measles outbreak killed 83 people, including children.
Health promotion projects in support of vaccination don’t tend to work against vaccine-suspicious people. In fact, anti-vaxxers are inclined to interpret research information as being ‘tainted’ with the cash of Big Pharma.
So let’s follow the money for a minute. There’s a lot of cash to be made in monetizing peoples desire for cures and treatments. After Wakefield’s false claims, alternative ‘new age’ treatments for autism began to proliferate. One list included ‘Vitamin A and vitamin B supplements, minerals, antiviral and antifungal drugs, steroids, γ-globulin, plasmapheresis, gluten-free and casein-free diets, hyperbaric oxygen chambers, chelation, aromatherapies, and electromagnetics’ and noted that these ‘made up only a small selection of the competing therapeutic choices’. This paper also described autistic children being treated with injections of Lupron, or leuprolide, a drug approved for the chemical castration of sex offenders and the treatment of precocious puberty, which has serious adverse side effects.
So did RFK stand to gain from his anti-vaccine stance? Tax filings showed that he reportedly made over $20,000 per week as chairman of Children’s Health Defense before stepping away from the non-profit in 2023 to run for president. In Ethics submissions he stated that Skyhorse Publishing had committed to paying ‘$2 to $4 million’ in book advances for two books: one titled ‘Unsettled Science’ and the other ‘A Defense for Israel’. No details on how many Benjamin’s RFK made on the sale of the onesie that got Bernie Sanders so hot under the collar.
For those who think US based stats don’t apply here, the Squiz today linked to news from the Edelman Trust Barometer which stated that ‘the majority of Australians (60-70%) believe they are being lied to by authorities, business leaders, government leaders, and journalists’ and that ‘40% say hostile activism is a legitimate tool to drive change.’
Personally, I only hope that my reference to porn in my first tutorial does not become one of the great myths of my degree. I suspect the incident relates to my ADHD, so I’d like to end by directing people to my favourite scientific slide on the matter:
All the best navigating the post-fact universe this week, comrades.
xRach
Share this post