When I decided to make this site I wasn’t entirely sure if I wanted to blog or not. It always struck me as a bit vain. After a bit thought, I came to the conclusion that writing articles for Nerditorial, often as a way to learn more on various topics, is fun but submitting them for publication, as if my opinions might mean something to any other human being, exceeds the hubris of the average blogger.
So, then, what should my first post be? Days have passed since giving myself the green light to blog. I’ve had a few ideas, some good, some…um…just, “um,” really. Today something happened. Kathryn Bjornstad, of Illinois, posting on Facebook, expressed so much of what people with autism feel about the anti-vaccine movement, which has been responsible for making autism a diagnosis some parents have come to see as a life sentence for their offspring and themselves. Her words are so close to my own feelings though I could never express them as wonderfully as she has done, so with her permission, I’ve posted them here.
My son who’ll I’ll call Pwdin (a term of endearment meaning pudding) is severely autistic. He was, to quote Lady GaGa, born that way. I would say I have some characteristics indicative of the broader autistic phenotype, I’m a BAP-Mammy! There are, of course, deficits that for Pwd’s sake I wish I could remediate, such as his inability to attend to language. The world is a dangerous place for curious, active toddlers but for one who doesn’t recognise his own name or understand the urgency in a tone of voice it is more dangerous still. I’d quite like it if he stopped taking his winky out in public too but beyond that, I wouldn’t change a thing.
The comments that followed Kathryn’s post on the Jenny McCarthy Body Countpage attest to the strength of feeling of individuals who are themselves autistic, parents of children with autism and those who aren’t directly affected by autism but are also deeply concerned by the liberties the anti-vaxers take with science, their children’s health and the health of the communities in which they live.
Thursday, 18 August 2011 at 17:07
Kathryn Bjørnstad: @XXXXXXXX, there has never been a case of autism related to vaccines. Ever. The three people you say had their babies get autism from vaccines have no scientific proof the babies’ autism was caused by vaccines. If they did actually change within a few days or weeks, you’d expect a doctor to note that in charts and you’d expect them to prove their cases. Historically when something is discovered to be harmful and cause things like diabetes or cancer or developmental disabilities, you see the substances are banned or restricted (like DDT and Agent Orange), come with strong warnings on the labels (like alcohol and cigarettes), or have a doctor-backed campaign begging people not to use them like fattening food). You don’t see a whole lot of doctors and scientists begging people to smoke and eat food that’s bad for them, because they don’t want to advise people to be unhealthy. I assure you, as an autistic person I am extremely invested in researching the antivax community. I’ve studied a whole hell of a lot of evidence that didn’t come from my doctor. I have read the Lancet paper written by the former Dr. Wakefield who abused children with the same disorder I have. I’ve followed his case. I’ve followed information about all of the major figures in the antivax movement. I’ve read what they wrote. They have never been able to convince me to believe in a global conspiracy where evil doctors give people unnecessary shots knowing that it’s making people ill. They’ve never been able to convince me that the shots are unnecessary, or that they make more than a tiny fraction of people ill.
I’ve read stories about severe vaccine reactions and I know a couple people who have had reactions to vaccines. I know people who have become seriously ill from vaccine-preventable illnesses. I have seen what these diseases do to a healthy baby, and believe me, you are not more likely to get measles from a vaccine than in the community if you live in Africa, where children die every day from the measles. When I look at things written by antivaxers I see they have absolutely no proof, only a lot of conspiracy theories and speculation. Many of these people are so ignorant about science that they don’t understand how vaccines work or how the progression of science and cancer occur. Saying your friend got diabetes from a vaccine because she happened to get vaccinated some time before her diagnosis is like saying her hair turned gray because she stubbed her toe that morning. One thing has nothing to do with the other, and it sounds extraordinarily silly to suggest otherwise.
As for autism, it is typically noticed at an age where most children are developing social skills. This happens between the ages of one year and two years, so doesn’t it make sense that it happens then? It even happens in children who aren’t vaccinated. And it’s not so much a matter of it being triggered so much as it just becomes noticeable that something is “wrong” about that time. Autistic people are also known to spontaneously lose skills. I know an autistic woman who didn’t speak until she was a teenager, spoke for about two years, and then lost her speech again. She blogs and communicates by text-to-speech programs. I personally experienced a change in my abilities when I started puberty. It’s frankly not that unusual for an autistic person to suddenly fall behind, but it doesn’t mean they’re just becoming autistic. Meanwhile, Jenny McCarthy uses my condition to frighten people out of their health and into buying her craptastic books. The antivaxers, in addition to being wrong and in addition to causing a resurgence of vaccine preventable illnesses in the US, have also made the world a worse place to be autistic. They have convinced people that being autistic is worse than being dead, that autism is the biggest tragedy in the world, that autism tears apart marriages (despite evidence to the contrary) and that autistic people are mere shells of human beings. I’m sorry but I really don’t appreciate that. I don’t appreciate seeing people like me blamed for their parents’ issues by virtue of being autistic. I sure as hell don’t think it’s better to be dead than to be autistic, and that kind of thinking has led to the murders of many autistic children. I reject the tragedy model of disability and I object to any characterization of autistic people as broken, useless, unwanted, or unhuman in anyway. Our lives still have value, and there is no reason antivaxers should feel the need to downplay our humanity in order to explain that autistic people have different needs than neurotypicals. But when a parent murders an autistic child, Age of Autism defends them in a way they would never defend the murderers of neurotypical children. In conclusion, the antivax community is dangerous to public health, ableist, and prone to bizarre reasoning and leaps of logic that Evil Knievel couldn’t make. I really see no reason to abandon science, logic, and my own health for that.