Fear and loathing in autism research

Kevin Leitch (blogger and father of an autistic child) was interviewed for a Nature Neuroscience editorial titled, Silencing debate over autism. The editorial addressed the effect of harassment from the mercury malicia (a malicious subset of the mercury parents) have directed at scientists and other interested parties. On his blog Kevin elaborated a bit more on what some of these malicious people have done:

I know of four scientists whom I have exchanged emails with who have been targeted by this same extreme group and who had:

1) Threats of property damage made against their homes and property
2) Threats of physical violence made against them
3) Been the victims of concerted email and telephone harassment campaigns to the point where security services have had to get involved
4) Had their associations with entities that merely sound like Pharma organisations misrepresented
5) Been accused, on no basis at all, of fraud

These scientists are staggered that merely performing accurate science has led them to having to (in three cases I know of) inform Campus Police of the places they work at of their movements in order to remain safe.

The editorial made the observation that over time, as the evidence against a link between thimerosal and autism has grown, the viciousness of those who believe in an autism epidemic caused by vaccines containing thimerosal has likewise increased. Perhaps with Lenny Schafer, editor of the "Schafer Autism" Report and moderator of the EoHarm Yahoo! group, taking the lead, many parents of autistic kids (his readership) are continually reminded how evil certain agencies of the United States Government (and elsewhere) are. Individuals associated with these agencies are singled out as super-evil, and following such a branding by people like Lenny Schafer, one can expect that this now supposedly super-evil person will be attacked in some way by the malicia. The National Autism Association engaged in one of these brandings of Dr. Paul Shattuck when his paper was published that examined some of the evidence that the mercury parents use for their autism epidemic rhetoric. Actually, what the NAA did was more like slander. Dr. Shattuck got a considerable level of ugliness directed at him by the malicia apart from what was done publicly.

Frequently, what happens is that someone posts to an Internet group or board some reference to new research that tends to discount their (dead, taxidermied and moldering) pet hypothesis. Next, a couple of the more extreme mercury parents begin metaphorically ripping their garments, and pulling out handfuls of hair. Then, questions such as "How dare they do this to our kids?" are posted, perhaps in all capital letters with lots of exclamation points, and then they start casting aspersions on the scientists that performed the research. The aspersions always include some reference to the scientist being a fraud and on the take. Sometimes it goes further with someone digging up and posting some (not necessarily true) personal information about the scientist.

This newly uncovered information (e.g., Dr. Z drives a Mercury Marquis once owned by a CDC official, and listens to The Mercury Blues on his brushed-aluminum iPod.) gives them more reason to hate that scientist. Personal details like a phone number, e-mail or street address of the scientist might be posted with some encouragement for people to contact that scientist and tell him or her what they think. Sometimes members of the group report back that they called or emailed so-and-so and said thus-and-such.

This is particularly true if the hated person person is a newspaper reporter who has reported on them unfavorably. Sometimes a mercury parent will share plans (it looks like joking, but it's hard to tell) to go to the targeted person's home and do something like put an anti-vaccine bumper sticker on the person's car. Occasionally, the rage is such that the parents say things that sound like death threats, such as JB Handley's sending an email to a woman and ending it with, "May god have mercy on your soul." This one is from 2006.

--- In EOHarm@y----groups.com, "bradfordhandley"
wrote:

Here's my valentine from this morning, you can reach her at:

[woman's name] @ [organization name] . org (without the spaces):

From: J.B. Handley
Sent: Tuesday, April 11, 2006 10:49 AM
To: '[woman's name]@...'; '[second woman's name]@...'
Subject: From Generation Rescue and PutChildrenFirst

Hi [woman's name]:

It was a pleasure to read in the LA Times that you are actually a
front for the CDC.

You are spending your time advocating to inject a potent neurotoxin
in tiny babies. As I said before, and I think you need now more than
ever, may God have mercy on your soul.

J.B. Handley
Co-Founder
Generation Rescue

Jenny W. recently posted a comment to the EoHarm group that implied she would like to see someone die, because she was upset that someone dared think that PCB's could cause autism (anything displacing mercury from public attention is not allowed). She was probably just saying that "someones [sic] 'bout to die" in a non-literal way, likely she was just blowing off steam, but she sure was angry.

In one interesting twist on this, a fave scientist of the mercury crowd called an autistic advocate on the phone at her home (uninvited) and offered to come visit her to set her straight about the autism-mercury connection. The advocate told the scientist, "No thanks."

Autism Diva sat across a table from Rick Rollens last year as Rollens accused a reputable scientist of being on the take, because that scientist had written things that tended to discount Rollens' (dead) pet hypothesis of THE EPIDEMIC OF AUTISM. The scientist in question was not in the room and so couldn't defend him or herself. The research that offended Rollens was performed not only by the scientist that Rollens hated, but also by another scientist whose name was also on the paper that upset Rollens. Autism Diva was appalled at the shallowness of the accusation coming from Rollens, and appalled that certain employees of the MIND Institute who were observing this outrage had not corrected Rollens in any way. Autism Diva responded by asking Rollens if the paper's second author was likewise in Lilly's "pocket." Rollens didn't answer.

The rage rolling off of "founding father" Rick Rollens was palpable. Autism Diva was the only person in the room who had taken a firm stand against the epidemic hype, so one might think that Rollens' rage was directed only at Autism Diva.

The researchers at the MIND Institute who were in the room at the time are apparently used to seeing this kind of intimidation tactic in action and didn't blink. One might think that they are afraid to cross the founding fathers, even.

Personalities are interesting things, a strong personality is hard to stand up to, even if the personality is all bark and the person is not likely to bite. This kind of intimidation is not ever supposed to be part of science, but it sure is in the middle of autism science, and not just in the hallowed halls of the UC Davis MIND Institute.

Autism Diva doesn't know what the answer to this problem is. It would be good if some of those who have been whipping up the fury of the multitudes of parents for a few years now would call off their dogs. The heavy haters among the mercury parents, people such as: Rick Rollens, Lenny Schafer, Mark Blaxill, Lyn Redwood, Sallie Bernard, Wendy Fournier, Rita Shreffler and JB Handley, and all those who continue to promote an autism epidemic with vaguely nefarious causes, for example, Lee Grossman, president of ASA, need to be responsible for what their enraging words incite people to do. But these individuals either truly believe that there is a giant conspiracy to destroy their very lives by harming their children, or possibly in the case of Lee Grossman, might be afraid to take a stand against the ones who do believe in the conspiracy, knowing that taking a stand against the hysteria might cost an organization some donor dollars. Lee Grossman puts Autism Diva in mind of former Governor of Alabama, George Wallace, who spoke like a racist, and harmed Black people with his racist rhetoric, but secretly was less racist than he seemed, perhaps. It is said that he used his image as a racist sort of guy just to get votes.

It would also be good if Autism Speaks (which employs scientists) would quit supporting the epidemic idea with their incendiary Public (dis)Service Ads and quit supporting the notion of an epidemic caused by nefarious forces by way of recommending parents read the recent Discover magazine article that hyped the mercury-autism idiocy. They can quit recommending DAN! intravenous chelationists for autism treatment in their "expert find" pages. They could clarify that parents should not ever be trusting mail order laboratories for "heavy metal" urine or hair analysis because of how untrustworthy those lab tests are.

It would be good if the NIH would quit funding quackery based studies like the one on chelation of non-poisoned autistic children Susan Swedo is trying to revive. Likewise they can rescind approval of the minocycline study that Susan Swedo is recruiting for where the kids will get two spinal taps and 6 months of an antibiotic that has some nasty side effects (pdf), plus vitamin B6.

Swedo has been quoted as saying, that she knows that the minocycline could turn the kid's teeth brown, but that if it cures their autism that would be worth it. So how do they get the kids to agree to the spinal taps? The kids must agree and sign a paper saying they agree if they are old enough. What do the parents do? Tell the kids that they (the kids) or their autism is so hideously awful that they (the kids) really need to endure this risky (and painful) procedure plus risk the drug side effects for a (very remote, probably nil) chance to make the child "normal"? Based on what? On someone's unproven idea that the autistic kids' brains might be inflamed and that this drug might decrease the inflammation... and then what? Then the kid gets to be normal? Really? And whatever dignity the child loses in this experiment is negligible, right? Right, Dr. Swedo?

There's plenty of fear and loathing to go around when it comes to autism research. Real scientists are afraid to contradict the mercury parents because their families may get hurt, and yet some faux scientists, even those who work for the Feds are not afraid to induce innocent children to loathe themselves or to expose these small children to needless experimentation.



Autism Diva
fed-up