In 2010, The Lancet finally withdrew Andrew Wakefield’s infamous 1998 paper claiming that there was a link between vaccines and autism, but the damage had already been done. He’d set off a tidal wave of people refusing vaccines on the grounds that they caused autism, claiming that their children had been ‘damaged’ by vaccines, and pressuring the larger community to stop vaccinating, creating utter panic among parents. And frustration among paediatricians, public health workers, and other people on the front lines, as well as among autistic adults who were unimpressed with yet another spurt of commentary about the horrors of autism.
Thanks to numerous papers since Wakefield’s 1998 contribution to the field, the supposed link between vaccines and autism has been decisively disproved. Vaccines are generally recognised as safe, with an extremely small risk of complications among a very small percentage of the population. While there are certain cases in which children should not be vaccinated, those cases are assessed on an individual basis and under the guidance of a paediatrician; no paediatrician wants to make a child sick, and thus would never suggest an inappropriate vaccine schedule for a child at risk.
Yet, the belief not only that vaccines are dangerous but that they cause autism continues to persist. Part of the reason for that, of course, is the extremely high profile given to the bogus idea and the bad science before it was formally refuted and retracted; major celebrities hopped on the bus, and widespread campaigns warned parents of the perils of vaccinating. Thus, it’s not too surprising that many people have internalised the idea that vaccines are bad, and that they should avoid them if they don’t want to ‘give’ their children autism.
But there’s something else at play here too, and it has its roots in ableism and the strong desire firstly to identify autism as something wrong and abnormal, and secondly as something ’caused’ by something, rather than a natural occurrence. Because if autism has a cause, then it can have a cure, and as prominent anti-autism organisation Autism Speaks is fond of reminding us, our goal as a society should be the elimination of autism (and, of course, autistic people, because a society without autism has no autistics). Many people deeply want a cure for autism, and thus the first impressions created by the Wakefield piece have reinforced the idea that a cure is possible, leaving many people clinging to the idea that vaccines must be involved even though all the science strongly argues against it.
Many people strive for an explanation for autism. Members of the general public certainly do, as do parents of autistic children who think of autism as something bad because they’ve been acculturated to do so, taught to view autism as a tragedy rather than a fact of life. Many of these people interact with autistics on a regular basis but aren’t even aware of it, and aren’t aware of the huge range of autistic experiences and the quality of life experienced by autistic people from all along the spectrum. The uniform view of autism is as a monster that eats children (autistic adults do not exist), turning them into silent hulks incapable of interacting with the world around them except through violent outbursts.
There is no consideration of the fact that perhaps it is not autism that does this, but the treatment of autistic people, no exploration of the emotions and brain pathways and ways of being that create the fabric of life for autistic people. There is no attempt to reach out and establish communication on the terms of the autistic person, rather than society. Autistics are viewed as empty shells with nothing inside except illness and disease, like rotten eggs that must be handled carefully so they don’t crack open and get their stinking entrails all over the kitchen.
Socially, there is a strong resistance to accepting neurodiversity, right down to pushing self-advocates out of public life, trying to shut down autistics speaking, or selectively picking which autistics are allowed to represent. The neat, tidy, articulate, clean autistics who are good at passing for neurotypical are embraced as models of good autism, while those who don’t fit within these narrow confines—nonverbal autistics, autistics who refuse to play nice—are stuck in a corner to sit quietly while the adults are talking, because what they represent is something alien and terrifying, the idea that it is possible to be autistic and not be a tragedy, without having to front as something you are not.
The insistence on clinging to the search for a ’cause’ of autism is, as I’ve said before, troubling, because it implies the need for a cure. This kind of research doesn’t take place in a value-neutral environment where the goal is simply to learn more about people and their brains and how everything works. It takes place in an environment where autism is effectively a crime, and to be autistic is to be something bad and terrible and wrong that needs to be fixed.
If this kind of research contributed to a greater acceptance of neurodiversity and an embracing of the reality that human minds are tremendously variable and it’s all rather exciting, really, I might be more supportive of it. I’d love to be able to educate people about how different brains work in their own different ways, and distinct ways of being are not wrong or right, they just are, and autism is one way of being, and that’s all right. But I deeply fear these campaigns, and I look at the repercussions of things like Wakefield’s awful paper, and all I can think of is that soon there will be a new fad to ‘explain’ autism, more bad science to keep fighting, while we’re still fighting for our lives and basic inclusion in society, the right to exist as we are, rather than to conform or lock ourselves away so we don’t scare the horses.