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By Mark Blaxill
A recent episode of the popular television show CSI:NY made the entertainment news headlines with a novel plot concept. In a clever (and probably lucrative) cross-promotion with the online game called Second Life, the show’s writers devised a story line in which a conflict between characters in the so-called “virtual world” of Second Life spilled over into the real world resulting in a sequence of murders and high speed chases that criss-crossed back and forth between the virtual world of Second Life and the real world of downtown Manhattan. As a fictional murder-mystery about a virtual world, it was fun to watch (I confess to being a CSI junkie myself). But the plot line stuck in my head for a different reason; in their ever-voracious search for catchy plotlines, the episode had an eerie air of prophecy about it. The main point was this: out of control game players in the virtual world killed real people. After a point, their fantasy life was no longer a game. It crossed the line into irresponsible behavior.
The rapid evolution of the Internet has created a host of fascinating, exhilarating and occasionally despicable new things. The Age of Autism is a blog and we’re proud to be a part of a new phenomenon called the blogosphere. The blogosphere is, by and large, a dynamic and democratizing force. Most of the time, bloggers are just another form of chat room, but in their most advanced form, blogs have introduced a new and vital form of journalistic competition to traditional news outlets. Competitive news blogs were reviled at first -- the audacity of Matt Drudge to talk about oral sex as if it were news! --but they have now become a force to be reckoned with. The best of these new journalists take the content of the traditional newspaper and remix it with far lower overhead and far greater speed: lots of opinion, a great deal more diversity of voices, a looser style and — in the best blogs -- some plain old-fashioned investigative reporting, too.
But as one might expect with any new form of cultural expression, there’s a bizarre variant of the blogosphere out there. It’s a strange hybrid: it looks like a regular low end blog, based almost entirely on opinion, a dressed up version of the typical online discussion groups and chat rooms. But upon closer inspection, it’s a mutant of a specific kind, one that more closely resembles Second Life than a chat room: in other words, it’s a game masquerading as real life. Like an online virtual world, its participants are not real people, they are avatars: a game player’s visual representation in the virtual world. Most of the time, avatars don’t reveal their real world identity and play their game as a real person hiding behind a mask. In a disturbing way, this new hybrid has found its way into the debates and controversies around autism science
Like the game players in Second Life, in the autism world avatars often carry colorful names. There are “oracles” and “divas,” cartoon characters and doo-wop song references. Invariably they are aggressive and, with unfortunate frequency, they carry their games into the real world. Indeed, many of these avatars want to enter directly into the scientific controversies surrounding autism and mix things up. Often connected with the so-called “neurodiversity” movement, many of these game players seem to define themselves by their own “autism” (although they seem plenty verbal and show a skill for shading the truth that our autistic kids would find many levels beyond their capacity to deceive). But unlike people that engage in the blogosphere using their real names and identities, these avatars all have one thing in common.
Most of us have learned the old saying, “If you don’t have something nice to say, don’t say it.” Of course, few ever live by that motto, and frankly the world needs people to debate and disagree, and sometimes that happens in ways that are just plain disagreeable. But when real people make the choice to express criticism or anger, they are constrained in their choices by the knowledge that their personal lives and reputations stand behind their words. If they make errors, or overstep the norms of civil society, their real world lives can suffer. When they ask to be heard and respected in a debate, their words are subject to the filtering we always apply when evaluating a comment from a real person. Is this person a reliable witness? Do they have a personal interest in a given outcome? Have they made valuable past contributions? In short, is this person a serious contributor or a wacko?
Without the normal constraints and filters that apply to real life, even when it plays out over the Internet, the nature and quality of the discourse degrades. In a very real and noxious way, we’re seeing this degradation playing out in the autism world. I propose a name for the mutant child of the blogosphere, the one that’s populated by cowardly avatars with no real life against which others can calibrate their contributions. Let’s call it what it is, not the blogosphere, but the wackosphere.
I’ll come back to the wackosphere in a moment. As AOA readers know, we’ve spent some time here covering the recent work by Cathy DeSoto and Robert Hitlan (MC Desoto and RT Hitlan. “Blood levels of mercury are related to diagnosis of autism: a reanalysis of an important data set.” Journal of Child Neurology. November, 2007) in revealing a statistical error in plain sight in the work of researchers from the University of Hong Kong. I described the highlights of the original paper by Patrick Ip (the first author), Virginia Wong (the corresponding author) and their colleagues previously (P Ip V Wong et al. “Mercury exposure in children with autistic spectrum disorder: case-control study.” Journal of Child Neurology, November 2004). But after reading the more detailed discussion by DeSoto at her Web site (click HERE), I found myself both impressed by DeSoto’s careful work and concerned by what she has been forced to cope with. So I decided to go back and dig a little deeper into the Ip et al paper (for a detailed discussion of the errors in the paper click HERE). In the process, I developed an even greater appreciation for both the depth of the errors that Ip and Wong made and the importance of DeSoto and Hitlan’s efforts in exposing those errors.
DeSoto and Hitlan deserve kudos for their careful attention to detail and their respectful diligence in correcting a scientific error. As you might imagine, it’s not a pleasant job to point out the errors of journal article to the journal’s editor, especially when the author in question is a member of the journal’s Editorial Board. But DeSoto and Hitlan have received important peer recognition for their work. Their article was listed, for example, in December 2007 as a “hidden jewel” by the group known as the Faculty of 1000 Biology.
You might ask, what does all this have to do with the wackosphere? Well quite a lot actually, because if you go to DeSoto’s Web site cited above, you quickly see that her entire reason for posting this Web site is to respond to specific critics of her work, almost all of them emanating from the wackosphere. She spends a great deal of time defending her work, and indeed her personal reputation, against the attacks of a single anonymous critic, in other words an avatar. This character has, in fact, launched a full-fledged and vicious attack on DeSoto’s work, her reasoning skills and personal character and has managed to enlist fellow travelers, both avatars and real people to join with him in piling on. He and his buddies get most of their facts wrong, they accuse DeSoto of being non-tenured (she has tenure), they claim that DeSoto’s criticism rests entirely on whether or not a one or another statistical test is correct (it’s a side point), they claim that she’s a “junk scientist” and a laughing stock in serious scientific circles (libelous and untrue, but hey, we’re anonymous so who cares?). More broadly, since they are unconstrained by the rules of real people in fair arguments, they play cheap rhetorical games that grossly distort DeSoto’s arguments (hey, it’s just a game, so why not play just to win?).
DeSoto lays all this out in painstaking (and painful to the responsible reader) detail. But at the very end of her lengthy self-defense, she raises and responds to the most important question of all.
Q. Why are you taking the time to write all of this? Who cares what a blog says?
“Unfortunately, the main bloggers of [censored wackosphere site name] have taken the time to respond to almost all of the other blogs about this article (there are a LOT, dozens at least). The [deleted] "critique" has been quoted all over (today I saw it on a regular news Web site). People who read it will certainly be misled, and I care. Furthermore, I did not want my silence to be taken as any sort of concession that what is being said about our article is rational or correct. … I teach graduate students; I cannot read falsehoods about my own study knowing they are misleading future scientists and not at least try to shed some light on the matter.”
In short, DeSoto feels obligated to spend her own time responding to the bullying of an anonymous coward because the blurring of the boundary between the real world and the wackosphere of autism avatars has real world consequences for her. For a serious and conscientious scientist who has done little more than stand up for quality, indeed who has given true meaning to the spirit of peer review, this is a bizarre form of punishment for the maintenance of high standards.
In a related point, why am I bothering to call attention to this episode anyway? Why not treat bullies and cowards the way they deserve to be treated, by ignoring them? In this case, there are two reasons. At one level, I raise it in order to call attention to the injustice. People like DeSoto deserve support from autism advocates and scientists alike. We need objective and careful analysis of the controversial questions surrounding the role of mercury in autism. Avatar attacks simply waste the time of valuable people like DeSoto and put them at risk of unwarranted damage to their reputation.
More to the point, as modest as this specific example is of the wackosphere affecting real life, unlike the story line on CSI: NY, it’s neither a fictional event nor an isolated incident. In fact, at a deeper level, there’s a widespread pattern of scientific intimidation and censorship underway in autism science that relies on a wide range of attack dogs, from the wackosphere, to mainstream journalists to the leaders of prestigious government agencies and institutions. AOA recently posted a link to the misconduct trial of Dr. Lonergan and her eventual vindication. The Wakefield Inquisition continues as Andrew Wakefield’s reward for listening to autism parents and helping our kids has degraded to the point that its real purpose has been revealed: it’s a heresy trial. And I have personal knowledge of several more serious acts of intimidation and persecution directed at practicing scientists, acts that those scientists have asked me not to make public. At least one of these was initiated by an avatar from the wackosphere.
In short, we need to call out the avatars from the wackosphere what they really are: wackos and cowards. We need to defend some minimum standards for how people are permitted to participate in a public debate. At the top of the list of these standards should be this: if anyone wants to participate in a debate about autism, put your real self on the line: your real name, your actual body of work (if you have any) and your professional accomplishments and reputation. Put the things that really matter -- your family’s future and your personal career prospects — out in public for everyone to see if you want to exercise the privilege of participation in civil society. If you’re willing to do that, then you have a right to be heard. If you’re not, then you should go back to your game and keep playing with yourself. Let serious people do serious work.
This is not a game, it’s serious business. Children’s futures are at stake. Cowards need not apply.
Mark Blaxil is Editor At Large for Age of Autism.