D***d if We Do, and D***d if We Don’t
October 2, 2008 by Kristina Chew, PhD
Filed under Health
As the October 1st issue of Scientific American Mind reminds us, words have power. I know this even more whenever I hear my son Charlie speak. He was very, very late to talk and he first didn’t talk at all, but used sign language. Today he speaks in short phrases and sentences, and almost-sentences.
A lot of words get thrown around about autism on the Internet, on blogs and newspaper and media websites and who knows where else. Too often, even most often, it seems that the vast percentage of those words are in the realm of misinformation, as the numerous mentions of notions about what causes autism, from power plants in Texas to the quite infamous hypotheses about vaccines and/or mercury. As Dr. Paul Offit noted on his Science Blogs Book Club post today:
A couple of bloggers praised the book for its tone, that I never appeared to get angry at the false prophets described in the book. The reason for that is that I’m not the father of a child with autism. If I were, I would have been quite angry. Angry because I think that the anti-vaccine forces have taken the autism story hostage. And angry that because of their influence, the media almost never carries stories about the real cause or causes of autism.
“Taken hostage”—-yes, that’s pretty much what has happened to autism discussions. Whether about education, safety concerns, how to get your child to eat more: Too often discussion devolves into “but look at this study” and “but you still can’t say 110% plus that there some vaccine won’t lead to some adverse effect in some child.” It’s an oh-so-endless game of bait and switch and if you, as I do, do not think that vaccines or something in vaccines can be linked to autism, it seems you’re d**ed if you do join in the fray, and doubly d**ed if you don’t.
The saddest thing, or thing that makes one maddest, is that–as Kev blogged today—autism has become a secondary concern in these debates. One has only to read the latest Age of Autism post by David Kirby about the “‘weaknesses and limitations’” of the CDC’s Vaccine Safety Datalink (VSD) to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.
As Dr. Offit has also pointed out in chapter 5 of his recently published book, the information in the VSD needs to be read and interpreted with care; for instance, the VSD lists the diagnoses of children by codes, rather than from “direction information from medical charts” (p. 93). In the VSD (of necessity) it’s a database of information—a child is a code, a diagnosis, with certain features and symptoms; the portrait of a child presented in the VSD (or any database) is an abstraction, a distillation of certain features.
And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say, rather than endless musings about bits of data and numbers and figures?
I know. There’s a feeling of like, “oh yeah, autism, right” tacked on as an afterthought–the only thing distinguishing the discussion from the flat out ant-vax websites.
David Kirby has no stake in this at all, except to keep getting paid and to possibly be trying to scootch out with some kind of journalism career left. If you want to know how long he could keep at it, keep counting the ingredients in a vaccine vial, since Aluminum is up next in the batter’s box.
to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.
Yeah, except for rare occasions, the talking points seem very far away from Eleanor as well.
“autism has become a secondary concern”
Playing devil’s advocate: the anti-vaccine crowd knows how to grab headlines. So…they need to be countered. If people ignore the Kirby’s of the world…they’ll hold court for an even longer period of time and endlessly drown out the more important stories. They’ll grab headlines and continue to do so until someone speaks out against them. So…the back and forth is a diversion from what matters most…but it makes the long-term picture much more hopeful. It’s sort of a necessary evil that hurts in the short-term, but preserves the possibility of a more balanced, relevant discussion down the road.
(to play devil’s opponent: people have autism now, not just in the “long-term”…so the stories should be receiving priority now; frustration ensues.)
some people get a devil on one shoulder, an angel on the other. i pretty sure that I have two little red guys bickering with one another.
“Necessary evil” is a good way to put it. Though for myself, I think it’s necessary to be careful not to be too reactive and to do more than respond to the latest salvos of the the anti-vaccine-ists—to be positive and not only negative.
bickering (of small red guys and others) does have its uses….
So true–it seems as though every time I tell someone new about my son’s diagnosis one of the first questions they ask (if they ask one) is whether or not I think vaccines harmed him. I try to answer patiently, but I have to admit that it’s becoming tiresome–and I am guiltily avoiding an autism walk in my community next weekend because I’m annoyed at the way autism has been portrayed in the media lately.
I was speaking to another colleague at my job about something else and autism came up and he mentioned he has a grand-nephew who’s autistic—-I steeled myself for the vaccine question; was relieved when he started talking about Early Intervention.
Did you hear about or watch the show on Dsicovery Health called Autism x 6? Talk about needing to work on using appropriate language. Ugh.
“And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say…?”
Exactly.
Among autism organizations run mostly by nonautistic people, a few, like AutCom and AANE, understand that, and act upon it.
What needs to happen now is for those of us with the clout (or collective clout) to be heard, to get into the governance of the really big autism organizations, like ASA and Autism Speaks, and steer them firmly in that direction.