An anti-vaxxer in my local Autism parent FB group posted about the latest CDC stats (suggesting an increase in childhood ASD diagnosis over previous years, up to perhaps 1 in 59, or thereabouts) . She describes it as a public health emergency, basically trying to rally an Angry-Mom revolution to force the government to take the Autism “epidemic” seriously.
On the surface, I agree that more research is necessary. We still have a lot to learn about Autism, biologically speaking, and we have a looooong way to go in terms of changing the social and systemic paradigms that make it harder for people on the Spectrum to navigate their lives.
I have a problem with words like “emergency” and “epidemic”, though. For one thing, they portray these rising statistics as an Autism outbreak—something happening more frequently—rather than a product of how we count. Our awareness of Autism is increasing, we’re looking for it more closely and more broadly, thus we’re finding it. That doesn’t mean it wasn’t always there.
My kid, for example. Extremely verbal, academically above-average, restricted interests (video games & spongebob, at the time) mainstream enough to be shrugged off as normal, absence of obvious stimming behaviors (at the time). It took almost eight years to get an appropriate diagnosis even in the midst of all this increasing awareness (2013), and still it was a battle to get all the “experts” on the same page. A generation ago, he would have been overlooked, diagnosed with something else, or not at all. “Bright but unpleasant” maybe. And he would have been worse off for it, I have no doubt.
But my bigger issue with the “epidemic/emergency” narrative is that it’s flat-out insulting. Even when the alarmist moms leave mention of vaccines out of their rallying-cry, they’re still pushing this notion that Autism is a disease, a horrible thing that crops up and eats people (read: through vaccines) and must be stopped. They talk about how much suffering Autistic people endure because of their Autism, they talk about what a drain Autism represents on public resources—the costs to educate, medicate and maintain them.
As a mother of a person with Autism I can speak for exactly one person with Autism (and that only a step removed, and in translation), but the suffering that my son and our family have experienced firsthand is not caused by Autism. His (and our) suffering comes from misunderstandings; it comes from prejudice and a dearth of resources and opportunities, things which result in the marginalization of an otherwise healthy and happy person who happens to be different from his peers.
Likewise, when these alarmists bemoan the “astronomical costs” of Autism to our communities, our schools, what they’re really saying is that we should protect the status quo—that cookie cutter approach to education and society at large—rather than invest in new paradigms, new ways to teach and employ and treat and engage, ways that recognize and embrace neurological diversity. They are saying people with Autism are too much trouble, and need to be snuffed out. That’s ableism, at best (although I think there’s another word for it)—and yeah. I have a problem with that.
Fabulous, and spot-on, coming from another once-removed parental unit. My daughter is thriving today, to first glance: people wonder what’s the matter with us, but if they spent five minutes chatting with her they’d pick up on the idiosyncrasies.
It’s not a disease, bullseye. Problem is, it’s still advertised as such, even by the well meaning. The anti-vaxxers as debaters, as adults detached from all circumstance, are close to a joke. But as parents… they see Ms. Hargitay on the TV, whose line has come down in the exact SAME ad, from 1 in 165, no now it’s 110, and finally (?) to 1 in 95. So my kid, without anything I can do about it, could have autism better than 1 in 100? Meanwhile, refusing a vaccine, that’s something a parent can DO, it’s an action, and the odds of anyone getting measles or whooping cough is in the same category as being struck by purple lightning. Twice. That’s not a tough choice to make, and we need to stop forcing frightened parents to make that choice.
More autism resources, including seeing it as something other than a plague, would be a start. Right now those parents “know” it’s a disease, and more, a death sentence. We need to stop terrifying them and showing them people like our kids who get along and are doing alright.
As far as I’m aware, vaccines in the US are still a choice; no one is being *forced* to choose one way or another. But I do not believe we should tolerate, socially, the choice *not* to vaccinate just because it’s “something to do [or not do]”. And I find it ironic that “public health emergency” can be a rallying cry for folks who opt not to vaccinate.
In any case, a better dialog and healthier perspective on Autism might be reachable by challenging the thinking that portrays it as a disease/death sentence–and that includes challenging the language. (Commence beating head against brick wall of social media discourse, amiright?)