Left Brain/Right Brain

AOL Health interviews Jeanette O’Donnell

2010-03-12T00:18:02Z

America Online (AOL) has a series of articles on autism recently added to their site. They have 5 articles, including one on Jeanette O’Donnell. Ms. O’Donnell is very active online with her blog What are they thinking? and commenting as mom26children.

Ms. O’Donnel describes herself as:

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.

The article, Caring for—and Blogging About—Her Five Autistic Children

I’ve always liked reading her posts and her comments. She’s a straight shooter, she doesn’t hold back, and she stays friendly.

Here is a section from the AOL piece (but take the time to go and read it)

O’Donnell:... But you still haven’t asked the question.

AOL: What is the question?

O’Donnell: People ask why I had six when I knew the first was autistic. First, the doctor told us there was no chance that a second kid would have it, so we didn’t know. But I want the people who question them to meet them. And I want them to tell me which one shouldn’t be here. Every one of my kids belongs. They are here for a reason. I don’t know what it is, but there’s a reason. Well, actually, I do know the reason.

O’Donnell: What’s the reason?

O’Donnel: So I could be their mama, that’s why they’re here! It’s very selfish. No, the truth is: They’re gonna teach the world a lot.

The Boston Globe defends the Judge Rotenberg Center

2010-03-12T01:18:50Z

The United States Department of Justice has opened an investigation on the Judge Rotenberg Center. The investigation is to determine whether certain methods of the JRC violate the Americans with Disabilities Act (ADA).

An Op-ed piece in the Boston Globe defended the JRC

Shocking truths
The Rotenberg Center’s methods are undoubtedly unorthodox. But they work.
by Lawrence Harmon

You can read the article at the Boston Globe site. Here is the final paragraph:

THE JUDGE Rotenberg Center in Canton, which stands alone in its use of painful skin shocks to eradicate self-mutilation and sudden assault, is a storehouse of ethical and medical dilemmas. But it’s no shock – and no shame – that the parents of some autistic and mentally retarded children embrace this controversial school.

There are some very impassioned comments after the article. I won’t quote the JRC parents who posted without permission, but I would encourage you to read the comments.

One comment is by Nancy Weiss, who worked with the coalition of disability advocacy groups that filed the complaint against JRC is below:

The Judge Rotenberg Center likes to make the point that there are no other options for people with severe, dangerous behaviors, however not only are there people just like the people at the Judge Rotenberg Center who are being supported humanely and effectively all over the United States; there are people who were at the Judge Rotenberg Center who are doing wonderfully with positive behavior supports in community settings across the country. These are people who JRC warned would never make it outside of their center, people they said would need to be hooked to the shock devices for life, people who were moved in spite of the Judge Rotenberg Center’s dire warnings that they would be violent and dangerous. As I said to Mr. Harmon in a lengthy conversation prior to his writing his column, logic tells us that the 193 people at JRC can’t be the only people in the country with behaviors this severe. I’m sorry he didn’t take me up on the contacts I provided him so he could learn how people with behaviors just as severe are supported successfully without resorting to painful methods.

The Judge Rotenberg Center would like visitors to believe that painful electric shocks are used only infrequently and only for the kinds of extreme behaviors Harmon lists in his article: eye gouging, head banging and the like – but a New York State report found students as young as nine years old subjected to sudden, painful, repeated electric shocks for such harmless behaviors as “refusing to follow staff directions”, “failing to maintain a neat appearance”, “stopping work for more than ten seconds”, “getting out of seat”. “interrupting others”, “nagging”, “swearing”, “whispering” and “slouching in chair”, and “moving conversation away from staff..” The Boston Globe itself reported on the testimony of former employees who spoke about a student who received as many as 350 shocks in one day, a figure the Globe reported was confirmed by the school. That Globe article reported a former employee to testify, “the shock is more painful than described by school officials. I got hit accidentally on my thumb and I had a tingling up to my elbow, on the inner part of my arm, I would say for four hours. I was saying I can’t believe these kids can do this. My hand was shaking. I wanted to go home, that’s how bad it was.”1

The director of the Judge Rotenberg Center testified at a Massachusetts legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was strapped to a board and subjected to an average of one shock every 16 seconds.2 A 2007 New York Times article notes, “a former teacher from the school …said he had seen children scream and writhe on the floor from the shock.” The Times article also speaks to how painful the shocks are, “Technically, the lowest shock given by Rotenberg is roughly twice what pain researchers have said is tolerable for most humans, said James Eason, a professor of biomedical engineering at Washington and Lee University”.3 And, even more frightening, all of the statements above were made before JRC came out with its newest shock device – the GED-4 which, according to a 2006 Boston Globe article, “deliver(s) 45 milliampere shocks—4 1/2 times stronger than the standard shocks” According to that article, ”Greg Miller, a former teacher’s assistant for more than three years, said one boy with autism was shocked by the higher-powered device so often that he had ‘burn scabs all over his torso, legs, and arms,’ forcing nurses to remove the electrodes for weeks so that his skin could heal”

Just a bee sting, used only occasionally in the most extreme circumstances? Harmon may have bought this but the facts don’t support it.

Harmon seems to think that these practices are OK because they are approved by parents and a probate judge. Let’s be clear that the Judge Rotenberg Center is a lucrative business. On their 2008 IRS forms (the most recent ones publicly available) JRC reported $390,301 in compensation for their Director. The Center was so beholding to the Judge who approved all the aversive procedures for their students that when he died, they re-named their facility in his honor. The facility used to be called the Behavior Research Institute but advocates would ask, “where’s the research?” Yes, the courts approve these practices, but one wonders how much they know about humane, effective alternatives.

And, in terms of parents approving the electric shock? Just ask parents like Evelyn Nicholson. In 2006, The Boston Globe reported that, “Evelyn Nicholson initially approved the shocks, but said she changed her mind as her son became more desperate, complaining that the shocks knocked him to the floor. Previously, she said, ‘I was advised that the shock . . . felt like a small pinch,’ and that the devices were rarely used.” Nicholson, like numbers of parents, when they found out what was being done to their sons and daughters, told JRC that they did not have their permission to use painful procedures on their kids and were told that if permission for the shock was not given they could come and take their son or daughter home. Parents giving permission? Not with any element of the free will that the term ‘permission’ usually implies.

Harmon speaks of other schools – schools he was told kids like these might be at if not for the Judge Rotenberg Center; schools where these kinds of students would instead be subjected to mechanical restraints. That might make a reader think that the Judge Rotenberg Center doesn’t use these restrictive techniques. The New York State investigational report on JRC states, “With mechanical movement limitation the student is strapped into/onto some form of physical apparatus. For example, a four-point platform board designed specifically for this purpose; or a helmet with thick padding and narrow facial grid that reduces sensory stimuli to the ears and eyes. Another form of mechanical restraint occurs when the student is in a five-point restraint in a chair. Students may be restrained for extensive periods of time (e.g., hours or intermittently for days) when restraint is used as a punishing consequence. Many students are required to carry their own “restraint bag” in which the restraint straps are contained.”4 The same report notes, “Some of these students were observed to be fully restrained in restraint chairs and wearing movement limiting helmets. One student left the school building in full restraint (hands and feet restrained with Velcro straps in a restraint chair), clearly agitated and upset, and returned the following morning carried to the conference room fully restrained in what appeared to be the same chair.”5

When I spoke to Mr. Harmon he seemed particularly swayed by the video called “Before and After” that almost every visitor sees. A 2007 Mother Jones article described the “before” footage shot in 1977, “An 11-year-old girl named Caroline arrives at the school strapped down onto a stretcher, her head encased in a helmet. In the next shot, free from restraints, she crouches down and tries to smash her helmeted head against the floor.” The Mother Jones reporter goes on to say, “Considering how compelling the “After” footage is, I am surprised to learn that five of the six children featured in it are still here. ‘This is Caroline,’ one of my escorts says an hour or two later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. ‘Blow me a kiss, Caroline,’ Israel says. She doesn’t respond.”

And here we have perhaps the most important point that Mr. Harmon missed. If these methods worked – if their inhumanity was justified by their success, you wouldn’t have students still there after 33 years. You wouldn’t need to continually develop devices that deliver a stronger and stronger shock or methods to spread the electrodes so the electrical current passes through more flesh for the purpose of assuring greater and greater amounts of pain. Positive behavioral approaches are proven to have more staying power; they give people tools that they can use for life and they help them to change dangerous behaviors in ways that value, enhance, and include people rather than through the use of methods that are coercive, controlling, and inhumane. While the “after” portion of the tape Mr. Harmon watched might have seemed compelling, did he ask why, if these methods worked, people are still there 33 years later, still hooked up to the devices that are touted as being so effective?

I’m sorry Harmon was taken in, as so many casual visitors before him have been. It’s easy to spend a few hours and accept what you’re being told at face value. It’s easy when you’re under deadline to buy into the belief that no alternatives exist. Mr. Harmon said he feels that the concerns of the 31 disability organizations that signed the letter that motivated the Department of Justice investigation seem “too pat.” I hope it is clear that these organizations did not take lightly the decision to sign this letter. These groups represent the major, mainstream developmental disability organizations in the country including the American Association on Intellectual and Developmental Disabilities, The Arc of the United States, Easter Seals, United Cerebral Palsy and 27 others which together represent the most respected researchers in the country.

No one should be deluded into thinking that Mr. Harmon’s visit to the Judge Rotenberg Center told the whole story. The Judge Rotenberg Center has a business to run; they are not going to tell a reporter that humane options exist, but the several hundred thousand professionals and advocates represented by the 31 disability organizations that called for the Department of Justice investigation, know full well that they do. And because they do, this treatment of our most vulnerable citizens should not be tolerated by a society grounded in a commitment to the ethical treatment of all people.

Nancy Weiss

March, 2010

I would make a simple statement: the Judge Rotenberg Center is paid with over $50M of taxpayer money. Why shouldn’t the taxpayers spend a little more money (and a little more than the few hours Mr. Harmon spent) to insure that the Center is within the laws? For all it’s clients. All the time.

1 people like this post.

1 commnent(s) for this post:

Monica says:
2010-03-12 13:35:24 That is sickening to read. I don't understand how anyone who knows what is done can think it is even remotely in the vicinity of being okay. Anyone.

AOL Health interviews Dora Raymaker

2010-03-12T05:20:05Z

AOL Health as a series of articles on autism. One, well worth your time to read, is by Dora Raymaker. The piece is Living with Autism, as Ms. Raymaker is an adult autistic.

I first became aware of Ms. Raymaker when she was blogging on Change.org. She is a member of the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) and the Autistic Self Advocacy Network (ASAN).

The interview is well worth the time, take the time to go and check it out. Here is a snippet:

AOL Health: So, how does autism affect your life?

DR: This question has never made much sense to me. There is no part of my daily life that is not affected by my developmental disability. At the same time, I am a complete person, and more things than just my developmental disability color my experiences. I can’t separate out the integrated parts of me. How does not having a developmental disability affect the life of someone who does not have one? How can that question be answered?

1 people like this post.

Barbara Loe Fisher’s lawsuit against Paul Offit dismissed

2010-03-12T06:41:35Z

If you recall, last October Wired Magazine had an article: An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All. Barbara Loe Fisher of the self-named National Vaccine Information Center took issue with a section of that article and sued Dr. Paul Offit. The complaint is here.

Ms. Fisher was suing Dr. Offit, Amy Wallace (who wrote the story for Wired) and Conde Nast Publishing (who publish Wired).

For background, you can read Respectful Insolence Suppression of speech through legal intimidation, anti-vaccine edition: Barbara Loe Fisher sues Dr. Paul Offit, Amy Wallace, and Condé Nast for libel, as well as One possible reason why Barbara Loe Fisher chose to sue Paul Offit in Virginia?

Autism News Beats “Barbara Loe Fisher: “Not a person to be believed””

SkepticBlog (Steve Novella) Another Libel Suit – This Time Against Paul Offit ,

And Terra Sigillata’s Paul Offit, Amy Wallace, and Conde Nast being sued by anti-vaccinationist

The complaint centers around this section of the Wired story:

Paul Offit has a slightly nasal voice and a forceful delivery that conspire to make him sound remarkably like Hawkeye Pierce, the cantankerous doctor played by Alan Alda on the TV series M*A*S*H. As a young man, Offit was a big fan of the show (though he felt then, and does now, that Hawkeye was “much cooler than me”). Offit is quick-witted, funny, and—despite a generally mild-mannered mien—sometimes so assertive as to seem brash. “Scientists, bound only by reason, are society’s true anarchists,” he has written—and he clearly sees himself as one. “Kaflooey theories” make him crazy, especially if they catch on. Fisher, who has long been the media’s go-to interview for what some in the autism arena call “parents rights,” makes him particularly nuts, as in “You just want to scream.” The reason? “She lies,” he says flatly.

“Barbara Loe Fisher inflames people against me. And wrongly. I’m in this for the same reason she is. I care about kids. Does she think Merck is paying me to speak about vaccines? Is that the logic?” he asks, exasperated. (Merck is doing no such thing). But when it comes to mandating vaccinations, Offit says, Fisher is right about him: He is an adamant supporter.

Ms. Fisher argued:

“If defendants are correct, Plaintiff Fisher is not a person to be believed and because her stock and trade is information and opinion derived from it, she has no business worthy of acceptance and use, honesty being the foundation of every such reliance.”

The court’s decision is online.

The decision is quite clear. Ms. Fisher has no case against Dr. Offit, Amy Wallace or Conde Nast.

In this case, the article’s quotation of Defendant Offit’s comment that Plaintiff “lies” cannot reasonably be understood to suggest, as the Complaint alleges, that Plaintiff is “a person lacking honesty and integrity . . . [who should be] shunned or excluded by those who seek information and opinion upon which to rely.” Rather, the context of the remark – in a lengthy article describing an emotional and highly charged debate about an important public issue over which Defendant Offit and Plaintiff have diametrically opposed views – plainly signals to readers that plainly signals to readers that they should expect emphatic language on both sides and should accordingly understand that the magazine is merely reporting Defendant Offit’s personal opinion of Ms. Arthur’s [Barbara Loe Fisher’s] views.

In my opinion, this case was an attempt to shut Dr. Offit up, restrict his right to free speech by forcing him into costly litigation. In my opinion, the key section of the Wired article was this paragraph:

[Dr. Offit], meanwhile, still rises every morning at 4 am and heads to his small, tidy study in a spare bedroom. Every morning, he spends a couple of hours working on what will be his sixth book, a history of the anti-vaccine movement. Offit gets excited when he talks about it.

I wish Dr. Offit well in his next book. I thank him for standing up for free speech. In my view, Barbara Loe Fisher and the organizations that ally with her are very dependent on the very right that Dr. Offit just defended. They have the ability to voice opinions which are in direct contradiction to established science. I would think they would cherish the first amendment to the U.S. Constitution.

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

6 people like this post.

6 commnent(s) for this post:

Joseph says:
2010-03-11 01:37:47 I hope the judge gives Ms. Fisher a lesson on why you are not supposed to abuse the legal system with the intent of hindering someone's participation in a debate.
isles says:
2010-03-11 01:43:06 I add my thanks, and will be first in line to buy a copy of his next book. If Dr. Offit's "history of the anti-vaccine movement" is as fearless as his other books, it should make quite the kerfuffle!
storkdok says:
2010-03-11 03:01:24 It was totally a SLAPP suit. My favorite part of the decision is the plaintiff's own words "causing her to appear 'odious, infamous, and ridiculous." She did that herself! My second most favorite part in the dismissal of complaint for "failure to state a claim" was about "the importance of 'evaluating complaints early in the process'...as a way to deal with 'the recognized problems created by 'strike suits' and the high cost of frivolous litigation.'" I will have to arm wrestle isles for the first copy of Dr. Offit's next book!
Clay says:
2010-03-11 05:23:05 Let's hope his "History of the Anti-Vaccination Movement" has the effect of burying it! Sure, AoA will complain, but it would be like the muffled screams coming from a 6 feet deep coffin. Someone yelling,"My son is my science!" will barely be heard.
Kathleen Seidel says:
2010-03-11 18:09:43 For me, the real kicker comes at the end, where Judge Hilton basically says, "Sure, I know you'd like to find yourself another place to strut your stuff, but no way in hell is that going to happen in my courtroom." “...[I]n the context of the Wired article, the statement “she lies” lacks the probably false content that is required to support a defamation action. Not only Plaintiff's claim of the statement's falsity invite an open-ended inquiry into Plaintiff's veracity, but it also threatens to ensnare the Court in the thorny and extremely contentious debate over the perceived risks of certain vaccines, their theoretical association with certain diseases or syndromes, and, at bottom, which side of this debate has 'truth” on their side. That is hardly the sort of issue that would be subject to verification based upon a “core of objective evidence.” ”The same prospect of litigation over unresolved – and perhaps unresolvable – scientific arguments was among the reasons that the accusation of lying in Faltas were deemed to be nonactionable. ”Plaintiff may wish to defend in Court the credibility of her conclusions about the danger of vaccines, the validity of the evidence she offers in support of those theories, and the policy choices that flow from those views – as well as her own credibility for advancing those positions. These, however, are academic questions that are not the sort of thing that courts or juries resolve in the context of a defamation action...”

U.S. Supreme Court to hear vaccine-autism case

2010-03-12T05:59:01Z

The Supreme Court of the United States (SCOTUS) has agreed to take on a vaccine injury case. SCOTUS is an appeals court, i.e. they only hear cases that have been already heard in other courts and this case is no different, having been heard in Vaccine Court and at least one appeals court. SCOTUS only hears a fraction of the cases that are submitted, choosing cases that set important precedents to help define U.S. laws. It is also worth noting that SCOTUS tends to decide on issues involving interpretation of law. In this case, they are not going to decide whether the child in question was injured, but, ratehr, the Court is to decide if a vaccine manufacturer can be sued directly. The question posed by the family in their petition is:

Section 22(b)(1) of the National Childhood Vaccine Injury Act of 1986 [“the Act”] expressly preempts certain design defect claims against vaccine manufacturers “if the injury or death resulted from side effects that were unavoidable even though the vaccine was properly prepared and was accompanied by proper directions and warnings.” 42 U.S.C. § 300aa-22(b)(1). A-104.

The Question Presented is

Whether the Third Circuit erred in holding that, contrary to its plain text and the decisions of this Court and others, Section 22(b)(1) preempts all vaccine design defect claims, whether the vaccine’s side effects were unavoidable or not?

As noted above, the case was heard previously in the Third Circuit Court of Appeals. The plaintiffs (family) lost in that case:

We hold that the plaintiffs design defect claims are expressly preempted by the Vaccine Act. We also conclude that the plaintiffs have failed to establish either a manufacturing defect or a warning defect claim under the Vaccine Act. For the reasons discussed above, we will affirm the District Court’s grant of summary judgment in favor of Wyeth.

In other words, they were not able to prove that the had the right to bring a “design defect” claim at all, and they failed to prove if there was a manufacturing defect or a warning defect.

The SCOTUS docket is online. I found it interesting that the self-named “National Vaccine Information Center” has filed a “friend of the court” brief, with Jim Moody listed as the attorney. Mr. Moody is on the board for SafeMinds, a group active in promoting the notion that mercury causes autism, and has been active in the public relations effort to support Dr. Andrew Wakefield.

The paragraph of the Vaccine Act covering this is partially quoted in the question posed to SCOTUS above. This is from § 300aa–22. Standards of responsibility

(b) Unavoidable adverse side effects; warnings
(1) No vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death associated with the administration of a vaccine after October 1, 1988, if the injury or death resulted from side effects that were unavoidable even though the vaccine was properly prepared and was accompanied by proper directions and warnings.
(2) For purposes of paragraph (1), a vaccine shall be presumed to be accompanied by proper directions and warnings if the vaccine manufacturer shows that it complied in all material respects with all requirements under the Federal Food, Drug, and Cosmetic Act [21 U.S.C. 301 et seq.] and section 262 of this title (including regulations issued under such provisions) applicable to the vaccine and related to vaccine-related injury or death for which the civil action was brought unless the plaintiff shows—
(A) that the manufacturer engaged in the conduct set forth in subparagraph (A) or (B) of section 300aa–23 (d)(2) of this title, or
(B) by clear and convincing evidence that the manufacturer failed to exercise due care notwithstanding its compliance with such Act and section (and regulations issued under such provisions).

I often read comments by parents claiming that vaccine manufacturers have zero liability. This is not accurate, as noted below (and referenced in the quote above):

(2) If in such an action the manufacturer shows that it complied, in all material respects, with all requirements under the Federal Food, Drug, and Cosmetic Act [21 U.S.C. 301 et seq.] and this chapter applicable to the vaccine and related to the vaccine injury or death with respect to which the action was brought, the manufacturer shall not be held liable for punitive damages unless the manufacturer engaged in—
(A) fraud or intentional and wrongful withholding of information from the Secretary during any phase of a proceeding for approval of the vaccine under section 262 of this title,
(B) intentional and wrongful withholding of information relating to the safety or efficacy of the vaccine after its approval, or
(C) other criminal or illegal activity relating to the safety and effectiveness of vaccines,

which activity related to the vaccine-related injury or death for which the civil action was brought.

In other words, if there is really the corruption many parent groups claim, the vaccine manufacturers are liable for lawsuits. But, this is a diversion as the present case before SCOTUS is not about this. As noted above, they are trying to define the question of whether the Vaccine Act precludes suits for design defect claims.

They had argued (and lost) in previous cases that the vaccine was “negligently designed because the defendant knew of a safer alternative and failed to produce it”.

As noted in a recent post by Mary Holland at the Age of Autism blog:

A three judge panel of the Third Circuit unanimously decided in March 2009 that petitioner Hannah Bruesewitz did not have the right to sue vaccine manufacturer Wyeth, Inc. to assert that its vaccine design was unsafe. [See Bruesewitz-Decision] Hannah was born in October, 1991, and received her third DPT shot on schedule on April 1, 1992. Shortly thereafter she developed “residual seizure disorder,” recognized as a Table Injury at the time, meaning that causation was presumed. “Residual seizure disorder” was deleted from the Table just one month before she filed her case. Finally, on December 20, 2002, more than ten years later, Vaccine Court categorically rejected her claim. This hardly complies with Congress’ promise in the 1986 NCVIA that awards be “made to vaccine-injured persons quickly, easily, and with certainty and generosity.” The Bruesewitz family argues that the safer acellular DTaP vaccine was long available by the time Hannah received the DPT and suffered seizures, and that her vaccine injury was avoidable had the manufacturer used this demonstrably safer vaccine design.

There is a lot of history involved in the above paragraph. Let’s start with the fact that the NCVIA (National Childhood Vaccine Injury Act) was put into place largely because of a number of claims filed about the safety of the older, whole cell, DPT vaccine. “Whole-cell” means that the pertussis vaccine component (the “P” in DPT) was made from whole pertussis bacteria which were killed. The concept of the pertussis vaccine, and the DPT vaccine in particular, as being dangerous is largely due to a study in 1981, Pertussis immunisation and serious acute neurological illness in children. That study claimed, “A significance association was shown between serious neurological illness and pertussis vaccine, though cases were few and most children recovered completely.”

Another study (in 1981) showed a significant number of temporary adverse reactions, Nature and Rates of Adverse Reactions Associated with DTP and DT Immunizations in Infants and Children.

Given Ms. Holland’s statement above (and similar statements I have read recently by others), one might assume that the removal of seizure disorders from the Table Injuries was somewhat arbitrary. This is not the case. Between the time of the 1981 study and 1995 (when seizure disorders were removed from the Table), numerous studies were performed which showed no link between DTP and seizures or other neurological injuries. One large study, published in 1994 (shortly before the Table injury was removed) is Risk of serious acute neurological illness after immunization with diphtheria-tetanus-pertussis vaccine. A population-based case-control study. They found no increased risk due to DTP in about 380,000 doses given. A more recent study (2001) The risk of seizures after receipt of whole-cell pertussis or measles, mumps, and rubella vaccine, concluded “There are significantly elevated risks of febrile seizures on the day of receipt of DTP vaccine and 8 to 14 days after the receipt of MMR vaccine, but these risks do not appear to be associated with any long-term, adverse consequences.”

The question before the Supreme Court is not whether the vaccine causes an injury. But, it would seem that the plaintiffs might be able to argue that the DTP vaccine resulted in more short-term adverse effects, but not that the science supports the idea that seizure disorders were caused by the vaccine.

Vaccine injury cases must be first heard in the special “Vaccine Court”. This case is no different. The decision can be found on the Vaccine Court’s website. The girl, Hannah, started having seizures after her third DPT vaccination. These progressed to a very serious seizure disorder, including times of status epilepticus (a continual state of seizures).

On April 14, 1992, Dr. Ira Bergman, a pediatric neurologist, wrote that she was entirely well until April 1, 1992 when she went for her third DPT and HiB which were given at 10:00 a.m. She did well until 12:30 p.m. when she suddenly began screaming and had a stiffening spell of her arms and legs that lasted for less than one minute. She was mildly groggy afterwards and, then, within a few minutes, was back to normal.

Her parents argued that Hannah suffered an acute encephalopathy (which is a table injury), with their expert witness defining it as ““any disease of the brain.” The Court, however, recognizes a different definition, where brain function must be depressed for a significant time. In other words, even though Hannah suffered seizures, the fact that she appeared normal, even happy, between the seizures was taken as evidence that the seizures were not the result of an acute encephalopathy.

The statement by Ms. Holland above notes the long delay between when the vaccine was administered and when the hearing was held (10 years). This is, of course, not acceptable. However, it is worth noting that it appears that the family’s attoney (Mr. Clifford Shoemaker) was not prepared when the first

1) April 1992, the third dose of DPT was administered
2) April 1995, the family filed with the vaccine court.
3) July 2001, the hearing is scheduled (for late August)
4) August 2001, the hearing is postponed at Mr Shoemaker’s request
5) February 2002, the trial was postponed again at Mr Shoemakers request
6) March 2002, the one of the family’s expert witnesses withdraws and another is unavailable to testify on the specified date. The Special Master (judge) allows the family another extension.
7) July 2002, the hearing is held. The family is requested to submit some medical information.
8) November 2002 (there appears to be a typo of 2001 here), the final reports are submitted by the Government (HHS).
9) December 2002, the claim is denied.

Could the system have been more efficient? Yes. That includes the family’s attorney and expert witnesses.

While we are talking about the expert witnesses, I realized as I read this decision that there were familiar parts. First, one regular expert witness, Dr. Marcel Kinsbourne was supposed to testify for the family. He “chose to withdraw” from the case. Another regular expert witness to the vaccine court, Dr. Mark Geier was also involved. Dr. Geier’s “expert” report left something to be desired.

First, his second report has obvious mistakes:

Petitioners filed Dr. Geier’s second affidavit, dated August 28, 2001. P. Ex. 22. In it, Dr. Geier confuses Hannah’s case with someone else’s because he refers to her death and subsequent autopsy. Hannah is still alive. Based on a meta-analysis from the Institute of Medicine (IOM), Dr. Geier concludes that DPT caused her purported encephalopathy. He also refers to the VAERS reports regarding arthritic symptoms and hepatitis and rubella vaccines. (Hannah does not have arthritic symptoms; hepatitis and rubella vaccines are not at issue here.)

His fourth report has some odd statements, including using a movie as a reference (yes, a movie):

Petitioners filed Dr. Geier’s fourth report, dated March 22, 2002. P. Ex. 33. Here, inter alia, he discusses the movie “A Beautiful Mind” as evidence that DPT can cause afebrile seizures because the lead character was administered insulin in order to cause him to have afebrile seizures which was hoped to be a cure of his schizophrenia. Dr. Geier thinks DPT lowered Hannah’s blood sugar, causing afebrile seizures.

Why use a movie? I can’t be certain, but from what I’ve heard, there is no scientific evidence that pertussis vaccines (either DPT or DTaP) can reduce blood sugar.

Dr. Geier’s testimony was not convincing:

Regarding Dr. Geier, the specialist in genetics and forensic medicine, his affidavits and report are not credible. First, being a board-certified geneticist and forensic medicine specialist does not qualify him to diagnose neurological diseases and offer an opinion as to how doctors who do specialize in neurology define “encephalopathy.” Dr. MacDonald’s testimony about the definition of acute encephalopathy is more credible than Dr. Geier’s and is well-supported in the medical literature. Hannah did not have acute encephalopathy.

Beyond that, the facts were not convincing. As noted above, the fact that between seizures Hannah appeared normal was evidence against an acute encephalopathy.

The family’s counsel also argued a “non-table” encephalopathy. However, this argument also did not prevail. The girl’s EEG’s did not indicate an encephalopathy, and the seizure activity in the EEG’s did not appear unusual for someone with epilepsy.

I do not know if the arguments the family would put forth would be different in civil court, but it doesn’t seem likely that the arguments they made in vaccine court (which has rules

Back to the present case in front of the Supreme Court (SCOTUS). Why would the Court hear this case? The Vaccine Act is a major piece of legislation. Whenever the U.S. Government (or any sovereign power) alloys itself to be sued (which is what the Act does), it is a big deal. But, this case actually involves what happens outside of the vaccine court. This affects the vaccine program, a major piece of the American public health program. The government extended protection to vaccine manufacturers by taking on liability itself. The question is how far does this protection go? A recent case (2008) from an appeals court in Georgia stated that people could sue the vaccine manufacturers for a “design defect”, contrary to the decision from Colorado that is the basis for this SCOTUS case. We have two different appeals courts with two different decisions on a very important piece of legislation. In addition, the Obama administration, through the Department of Justice, filed a “friend of the court” brief in regards to the Georgia case. The administration would like to see the “design defect” question answered before the Omnibus Autism Proceeding completes and thousands of families look to the civil courts for their next step. The Georgia case was withdrawn by the family, but the DoJ requested that the Supreme Court take on the Bruesewitz case in order to answer this question. This is perfect territory for the Supreme Court. They won’t decide if any child was injured, but they will clarify the definition of a key piece of legislation.

This case isn’t specifically about the question of vaccines causing autism. The Bruesewitz case, as argued in vaccine court, involves a seizure disorder. The impact for the many families who may be denied claims in the Omnibus Autism Proceeding is obvious: if the Supreme Court allows “design defect” claims, this will open a window for these families to sue in civil court.

1 people like this post.

New LBRB Feature

2010-03-10T13:26:04Z

Never one to rest easy when a new technology becaome popular, I wanted to find a way to harness Twitter to make it appealing to LBRB readers. I think I have now. If you go to http://leftbrainrightbrain.co.uk/tweets/ you’ll see a live updating list of the latest tweets from and about a selection of Tweeters including myself, Liz Ditz, Orac and others. Just leave the page open it’ll update itself as these individuals tweet. If it become popular enough I’ll port it into its own site.

If you tweet about autism and/or science that discusses autism then please contact me and I’ll add you to the list of contributors.

NIH to study recovered autistics

2010-03-10T00:32:52Z

A clinical trial has been started to study and compare autistics (children to young adults) who have “remitted” autism. These are people who would be called “recovered” by the autism parent community.

The trial can be found on clinicaltrials.gov The purpose of the trial is given as:

Autism is defined as a lifelong pervasive developmental disability, as such, symptom recovery is considered rare. Reports by Lovaas and McEachin, Smith & Lovaas and more recently by Cohen, Amerine-Dickens, & Smith, Smith Groen et al. and Sutera Pandey et al suggest that intensive behavioral intervention programs during preschool years may result in improvement to the point where some children no longer meet criteria for autism by the time they reach school age. Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers. The goal of the current research is to characterize the behavioral and biological profiles of children with autism who show significant symptom reduction such that they no longer meet criteria for autism (Remitted Autism [REM-AUT]) and to contrast them with a group of children who continue to meet criteria for autism (AUT) and to typically developing (TD) group of children. Examining whether neurobiological and neurobehavioral symptoms commonly reported in autism are as frequent and severe in children who have responded to treatment is an important first step in determining what factors may contribute to symptom remission in autism. In addition, understanding how children with remitted autism compare to typically developing children will help us better understand whether symptom improvement is through remediation (normalization of function) or compensation (achieving the same behavioral/adaptive outcome but through an alternative process)

Three groups will be compared: “remitted autism” (REM-AUT), “autism” (AUTISM) and “typically developing” (TD).

The inclusion criteria are given below. As you can imagine, the criteria are extensive for the “remitted” group.

Remitted Autism (REM-AUT) Group:

1. Diagnosis of autism prior to symptom improvement
1. valid administration of ADI and/or ADOS with accompanying interpretive report yielding an autism diagnosis
OR
2. clinical/developmental evaluation including a detailed review of the child’s history and direct observation of current behavioral functioning resulting in a documented diagnosis of autism by a child developmental specialist experienced with autism spectrum disorders such as a developmental pediatrician, developmental psychologist, child clinical psychologist, or a child psychiatrist
3. measure of cognitive ability from within 1 year of initial autism diagnosis
4. objective measure indicative of prominent autism symptoms using a recognized and standardized assessment of autism symptoms such as the Social Responsiveness Scale (SRS), Childhood Autism Rating Scale (CARS), or the Modified Checklist for Autism in Toddlers (MCHAT) or video tapes of assessments
5. initial diagnosis of autism prior to age 6
AND
6. Medical, educational, treatment record review by PDN branch clinicians to confirm diagnostic impressions including a detailed description of child’s behaviors that support an autism diagnosis
7. The final decision for meeting diagnostic and treatment history inclusion criteria is based on PDN branch staff review of the case
8. Treatment history: all participants must have received adequate treatment intervention for their autism symptoms. Participant medical and treatment records will be carefully reviewed to ascertain their treatment history

2. Current functioning:

a. Parent report and report of at least one professional that child is no longer autistic

3. At screening visit (after meeting initial eligibility), will not meet criteria for autism
1. Must not meet criteria for autism per overall clinical impression based on information collected from administration of the ADOS, current ADI-R symptoms, and other clinical observations made the assessment.
2. Teacher/informant report of autism symptoms (such as results from the SRS) not indicative of autism diagnosis
3. Minimum improvement of symptoms required from group assignment: approximately 2 point CGI severity of illness change (or equivalent) based on PDN impression of change in illness severity from initial diagnosis (estimated based on review of past medical records) and current functioning
OR
4. Current assessment of functional impairment due to autism symptoms using a standardized assessment measure such as the Developmental Disability-Children’s Global Assessment Scale will reflect adequate functioning in all areas and/or a clinically significant improvement in functioning, consistent with common psychiatric treatment definitions for treatment response

4. Able to participate in study procedures.

AUTISM Group:

1. Diagnosis of autism following the same criteria as described above
2. Treatment history: all study participants must have received adequate treatment intervention. Treatment history will be matched to treatment provided to children in the REM-AUT group.
3. Screening visit (after meeting initial eligibility): will meet criteria for autistic disorder using the same diagnostic process described for the REM-AUT group above
4. Matched to REM-AUT group on IQ, age of diagnosis, and treatment history. IQ matching between the AUT and REM-AUT groups will be based on pretreatment estimates of cognitive level obtained from the medical record review.
5. Able to participate in study procedures.

TD Group:

1. IQ matched to a sub-sample of children in the REM-AUT group with normal range intellectual functioning. IQ matching between the TD and REM-AUT groups will be based on current intellectual functioning at the time of study participation.
2. Able to participate in study procedures.

EXCLUSION CRITERIA:

All groups: May not be pregnant or have a known genetic disorder, mitochondrial disease, history of birth trauma, or current uncontrolled seizures

TD Group:

1. Current diagnosis or significant history of pervasive developmental disorder, language delay or disorder (except articulation), attention or learning issues, or major psychiatric condition.
2. Prematurity at birth less than 36 weeks gestation); or birth weight significantly below normal for gestational age (SGA- small for gestational age).

This is a study that should be done, in my opinion. I will note that this study has supposedly been one of the key pieces being sought by multiple parent groups. I will further note that I have not seen any of them mention this study. Quite the opposite, in fact. I see comments occasionally on blogs about how their frustration that such a study is not being performed. Perhaps I missed it, but I am curious why their leadership doesn’t make a big deal out of this.

1 people like this post.

12 commnent(s) for this post:

Corina Becker says:
2010-03-10 01:40:18 Personally, I think it will be very interesting to see the results of this study.
passionlessDrone says:
2010-03-10 02:08:53 Hi Sullivan - In my group of parent friends, I believe there are two children who have lost their diagnosis of autism all together. There may be one or two more that went from autism to PDD-NOS or Aspergers. I will forward them this information. Tragically, I cannot (yet) enroll my son. Upwards and onwards. Thank you for posting this. - pD
Ian MacGregor says:
2010-03-10 03:27:36 PD, as I read the study requirements they also want to look at children who have had similar treatments but remain autistic.
Science Mom says:
2010-03-10 03:36:14 The inclusion criteria read to me that they will accept children that have underwent 'biomed'. Am I correct with that interpretation? In any event, this is an important study and great catch Sullivan.
Laurentius Rex says:
2010-03-10 11:25:58 Whilst interesting perhaps as an essay in the sociology of medicine I am afraid that such a study would fail all the tests of a rigid Popperian science in that like faith it is a study based upon an unverifiable hypothesis. That is to say it is one of Wittgensteins language games in that the notion is predicated upon how one defines autism at any one time, and that recovery is wholly dependent upon refining the categories across an age range. I cannot see, given that there are as yet no bio-markers for autism any wider validity at all. It is essentially like defining recovery from epilepsy by observing people whose epilepsy is controlled by medication. You won't see it, (by the same tokens that even the so called gold standards of autism measure the phenomenon) but it is still there. Heck if I walk into a room, shake hands politely with a physician, fake eye contact, sit down, make my excuses and then depart, you won't have measured autism or anything else unless you apply surmise and pseudo science to come up with your conclusion whatever that might be. Larry

An open letter to Jenny McCarthy

2010-03-09T16:07:01Z

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just too kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for years – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

...

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is afraid of autism recovery Ms McCarthy but I’ll tell you what some of us are afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: who says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like all medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given about the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

...the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

18 people like this post.

19 commnent(s) for this post:

Regan says:
2010-03-09 17:39:33 Jenny McCarthy doesn't even have to set up the study. UConn has a group who is studying such "optimal outcome" cases, and there is an NIMH study right now with an active recruitment. Rather than complain about lack of study - pony up the cases, the researchers are waiting.
Joseph says:
2010-03-09 18:12:05
The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.
Isn't this unusual, considering that parents of autistic children are quite accepting of woo? (e.g. Senel 2005.) That's not easy to reconcile, actually. The first explanation that comes to mind, i.e. that only parents of "severe" children try woo, doesn't really cut it, does it?
isles says:
2010-03-09 18:21:09 Given that antivaccine activism has become Jenny McCarthy's claim to fame, it's curious that she takes swipes at others for having conflicts of interest. How much press would she be getting right now for her acting career alone? This faux-controversy is her bread and butter and I wouldn't expect her to relinquish it if God Himself appeared, rolled his eyes, and explained to her that vaccines.just.don't.cause.autism.
Margaret Romao Toigo says:
2010-03-09 18:26:26 I've read many, many so-called "recovery" stories, in which parents report that their autistic kids learned new skills, or made remarkable progress vis a vis their abilities, behavior and/or cognition. I could tell the very same stories about both my autistic kids, except I have no quack remedies to credit because they learned new skills and made remarkable progress without ever getting any of that stuff.
Bad mommy says:
2010-03-09 19:32:34 I've had to quit reading the HuffPo over crap like this. I removed the link from my computer so I won't be tempted to pop over there and check their latest aggregations from other people. HuffPo had the potential to be a decent media outlet, and then they started up with the woo. I wonder if Arianna Huffington is being paid by the quacks, or if she really does believe this tripe? I can't change the world, but nothing says that I have to provide clicks to drive her ad revenue.

Update: Dr. Poul Thorsen not missing, NOT suspected in theft

2010-03-09T08:24:48Z

This Saturday, I wrote what is shaping up to be a controversial post, questioning whether a document used by Age of Autism to implicate Dr. Poul Thorsen in the theft of several million dollars was authentic. I must say I did not exactly give this my full attention: I wrote the material in the post only after I spent the majority afternoon writing an epic installment of my fan novel “The Rookie”. But, even with this division of resources, I was quite satisfied I had enough to blow the AoA story out of the water. The next day, helpful commenters sped my work by identifying a source from the Copenhagen Post, so that when Olmsted showed up to complain and even friendly correspondents suggested I take it down or make changes, I simply inserted a page worth of new evidence that the document does not represent what any actual university representative in his right mind would say in a statement to the public. I am currently awaiting the results of inquiries by a correspondent, who is asking the alleged author about it- a drastic step not in evidence at AoA.

Meanwhile, at AoA, a fifth story has appeared on Thorsen, which unlike the four previous ones makes no mention of Thorsen’s alleged disappearance or the missing money. It appears that they are trying to back away from criminal accusations to more prosaic aspersions on his research. I am sure that representatives of Thorsen, his former employer and international law enforcement will be very amused. It is noteworthy that they did in fact never have the slightest basis for these claims. Copenhagen Post did not name a suspect (allowing Ginger Taylor to identify Kreesten Madsen as the suspect before falling in line with Olmsted and AoA by implicating Thorsen), and even the document which I believe to be a forgery makes no more than ham-fisted insinuations against Thorsen in that matter. And, the document said absolutely nothing about Thorsen’s whereabouts being unknown. Any amount of investigation should have shown that he has, in fact, been living a very public life since his reported “disappearance” in ca. March 2009:

His professional biography gives an address for him, indicated to be current as of ca. January 2010.

Poul Thorsen is listed as a member of the American Psychiatric Association’s DSM-5 Development team.

PubMed lists the following papers published by Thorsen since ca. March 2009:A population-based association study of glutamate decarboxylase 1 as a candidate gene for autism.

Buttenschøn HN, Lauritsen MB, El Daoud A, Hollegaard M, Jorgensen M, Tvedegaard K, Hougaard D, Børglum A, Thorsen P, Mors O.

J Neural Transm. 2009 Mar;116(3):381-8. Epub 2009 Jan 13.
First-trimester maternal plasma cytokine levels, pre-pregnancy body mass index, and spontaneous preterm delivery.
Curry AE, Thorsen P, Drews C, Schendel D, Skogstrand K, Flanders WD, Hougaard D, Olsen J, Vogel I. Acta Obstet Gynecol Scand. 2009;88(3):332-42.
Cytokines associated with bronchopulmonary dysplasia or death in extremely low birth weight infants.
Ambalavanan N, Carlo WA, D’Angio CT, McDonald SA, Das A, Schendel D, Thorsen P, Higgins RD; Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network.

Pediatrics. 2009 Apr;123(4):1132-41.
High-throughput genotyping on archived dried blood spot samples.
Hollegaard MV, Grove J, Thorsen P, Nørgaard-Pedersen B, Hougaard DM.

Genet Test Mol Biomarkers. 2009 Apr;13(2):173-9.
Differential patterns of 27 cord blood immune biomarkers across gestational age.
Matoba N, Yu Y, Mestan K, Pearson C, Ortiz K, Porta N, Thorsen P, Skogstrand K, Hougaard DM, Zuckerman B, Wang X.

Pediatrics. 2009 May;123(5):1320-8.
Validation of self-reported data on assisted conception in The Danish National Birth Cohort.
Hvidtjørn D, Grove J, Schendel D, Schieve LA, Ernst E, Olsen J, Thorsen P.

Hum Reprod. 2009 Sep;24(9):2332-40. Epub 2009 May 19.
Circulating relaxin and cervical length in midpregnancy are independently associated with spontaneous preterm birth.
Sandager P, Uldbjerg N, Henriksen TB, Goldsmith LT, Thorsen P, Weiss G, Vogel I.

Am J Obstet Gynecol. 2009 Aug;201(2):169.e1-6. Epub 2009 May 30.
Racial disparity in pathophysiologic pathways of preterm birth based on genetic variants.
Menon R, Pearce B, Velez DR, Merialdi M, Williams SM, Fortunato SJ, Thorsen P.

Reprod Biol Endocrinol. 2009 Jun 15;7:62.
Cord blood biomarkers of the fetal inflammatory response.
Mestan K, Yu Y, Thorsen P, Skogstrand K, Matoba N, Liu X, Kumar R, Hougaard DM, Gupta M, Pearson C, Ortiz K, Bauchner H, Wang X.

J Matern Fetal Neonatal Med. 2009 May;22(5):379-87.
Genome-wide scans using archived neonatal dried blood spot samples.
Hollegaard MV, Grauholm J, Børglum A, Nyegaard M, Nørgaard-Pedersen B, Ørntoft T, Mortensen PB, Wiuf C, Mors O, Didriksen M, Thorsen P, Hougaard DM.

BMC Genomics. 2009 Jul 4;10:297.
Association of family history of autoimmune diseases and autism spectrum disorders.
Atladóttir HO, Pedersen MG, Thorsen P, Mortensen PB, Deleuran B, Eaton WW, Parner ET.

Pediatrics. 2009 Aug;124(2):687-94. Epub 2009 Jul 5.
Prediction of spontaneous preterm delivery in women with preterm labor: analysis of multiple proteins in amniotic and cervical fluids.
Holst RM, Hagberg H, Wennerholm UB, Skogstrand K, Thorsen P, Jacobsson B.

Obstet Gynecol. 2009 Aug;114(2 Pt 1):268-77.
Validity of childhood autism in the Danish Psychiatric Central Register: findings from a cohort sample born 1990-1999.
Lauritsen MB, Jørgensen M, Madsen KM, Lemcke S, Toft S, Grove J, Schendel DE, Thorsen P.

J Autism Dev Disord. 2010 Feb;40(2):139-48. Epub 2009 Sep 1.
Circulating beta chemokine and MMP 9 as markers of oxidative injury in extremely low birth weight infants.
Natarajan G, Shankaran S, McDonald SA, DAS A, Stoll BJ, Higgins RD, Thorsen P, Skogstrand K, Hougaard DM, Carlo WA; NICHD neonatal research network.

Pediatr Res. 2010 Jan;67(1):77-82.
Mid-trimester maternal plasma cytokines and CRP as predictors of spontaneous preterm birth.
Kramer MS, Kahn SR, Platt RW, Genest J, Chen MF, Goulet L, Séguin L, Lydon J, McNamara H, Libman M, Dahhou M, Lamoureux J, Skogstrand K, Thorsen P.

Cytokine. 2010 Jan;49(1):10-4. Epub 2009 Sep 26.
Polymorphisms in the promoter region of relaxin-2 and preterm birth: involvement of relaxin in the etiology of preterm birth.
Vogel I, Hollegaard MV, Hougaard DM, Thorsen P, Grove J.

In Vivo. 2009 Nov-Dec;23(6):1005-9.
Perinatal Systemic Inflammatory Response Syndrome and Retinopathy of Prematurity.
Sood BG, Madan A, Saha S, Schendel D, Thorsen P, Skogstrand K, Hougaard D, Shankaran S, Carlo W; On behalf of the NICHD Neonatal Research Network.

Pediatr Res. 2009 Dec 21.
Lifestyle during pregnancy: neurodevelopmental effects at 5 years of age. The design and implementation of a prospective follow-up study.
Kesmodel US, Underbjerg M, Kilburn TR, Bakketeig L, Mortensen EL, Landrø NI, Schendel D, Bertrand J, Grove J, Ebrahim S, Thorsen P.

Scand J Public Health. 2010 Mar;38(2):208-19
Interrelationship of Cytokines, Hypothalamic-Pituitary-Adrenal Axis Hormones, and Psychosocial Variables in the Prediction of Preterm Birth.
Pearce BD, Grove J, Bonney EA, Bliwise N, Dudley DJ, Schendel DE, Thorsen P.

Gynecol Obstet Invest. 2010 Feb 17;70(1):40-46.

One can reasonably infer that such a prolific volume of papers would be difficult to achieve while keeping one’s whereabouts unknown, or being under even a veiled suspicion of a crime. (Such things can be expected to get around, even if they don’t enter public record!) This also deserves to be noted as a remarkable addition to Olmsted’s already distinguished record of NOT finding things. He did not seem to find autism in Lancaster County, Pennsylvania. He managed not to find the right patent policy and two eligible coinventors when investigating Paul Offit’s Rotateq payments. But surely failing to find a distinguished researcher with 20 publications in the last year alone is a coup to top them all!

Also in the last week, a few days before this non-story broke, I received the following email, in the name of someone I care about deeply but have been out of touch with for a while:

How are you doing?I hope you get this on time. Am sorry i did not inform you
about my travelling to United kingdom for a program.I can barely think or
type straight at this moment.Something really terrible is happening to me
right now and I will be needing Your Urgent favour,I hope you come to my
aid.

Yesterday,I had a trip here in Kent dover (UK) for a Seminar. Unfortunately
for me I got Mugged at gun Point on my way to the hotel where i lodged.They
went away With all i have got on me including my wallet where i have all my
cash and credit card and also my cell phone.I wasn’t injured because I
quickly complied.since then i have been without any money, I am even owing
the hotel bills here.Presently my traveling documents are been held down by
the hotel management pending the time i am able to Clear bills.I contacted
the police here and they only asked me to write a statement about the
incident and later reffered me to the embassy.I have spoken to the embassy
here but they are not responding to the matter effectively.I am confused and
so full of panic right now.I do not feel safe here any more. For now,i do
not have a phone where i can be reached.All i have got here is my mail.I
also have limited access to the computer.I will tell you more about my
terrible experience here when i get back home.

I urgently require your financial assistance now.Please I need you to loan
me about (1,250 Pounds) to sort-out my hotel bills and other expenses
incurred so as to get myself back home soon.I Promise to refund your money
immediately i return home.
I will appreciate any amount you can quickly arrange and send to me via
Western Union or Money Gram with the details below…

Please remember to send me full details of the transfer or scanned copy of
the transfer receipt so that i can receive over here without any Further
delay or problem.let me know if you can be of any help Because you are the
only person i can reach at this moment.
I await your Kind response soon.

Kind Regards

I think everyone can see where this is going… This caused me real concern, but I was very skeptical. Everything about this read like a scam or urban legend. It was no surprise to my when I quickly received a followup email warning that it WAS a scam. I know I can’t very well claim it as a major “catch” on my part, but it should serve to illustrate a point: There are times when, even in the absence of complete information, one should be automatically suspicious of a “source”. This email was one example. As far as I’m concerned, the document which forms the sole basis for the accusations against Thorsen is another. Even the citation of one Jorgen Jorgensen, a circumstantial detail I did confirm, was enough to make me skeptical!

What this means for anyone investigating this story is that, even if (as I see NO reason to doubt) they did not know a key document was forged, indeed even if the document is proved authentic, they should never have proceeded the way they did. At the very least, they should have contacted Aarhus University for a statement before posting ANYTHING based upon the document. Instead, they openly aired charges (particularly the claim that Aarhus prohibited Thorsen from working at another university) that would be indefensible even if the document is accepted at face value.

The bottom line is, that even if a butcher doesn’t know where his meat came from, he should know when it stinks. Likewise, anyone who didn’t know the document behind the Thorsen was suspicious at best probably didn’t want to know. In both cases, ignorance is no excuse for distributing unsound goods to the public.

5 people like this post.

26 commnent(s) for this post:

Regan says:
2010-03-09 17:21:18 If this turns out to be fallacious, would there be grounds for libel? This is a sheer question, I really don't know. Right now the situation reminds me of a similar direct-to-the-public claim of a connection of a researcher's conflict of interest to Merck the pharmaceutical giant a few years back. Even a little nominal checking resulted in finding that the actual connection was a small grant from the John Merck Fund, a charitable trust that funds developmental disabilities research. I believe that LB/RB covered that. The question I have is why are these allegations played so fast and loose and disseminated widely in the absence of taking the extra time to exercise some responsibility - is it such "hot news" that there's just no time for some relatively simple fact-checking or corroboration of details to be done (as various fails on details now seem to indicate)? I have some speculations in that direction. When these "news" items hit my spam box, as this one did orginally, I pretty much half expect it to be essentially incorrect.
isles says:
2010-03-09 17:26:18 Sweet Jesus, does this Thorsen ever sleep? Maybe some of those citations are for a different Thorsen P. I can't say I've been following this moment-to-moment - has anyone actually reached out and asked the poor guy what is going on?
Denmark Paper says:
2010-03-09 17:40:21 David, Someone (unnamed, so not necessarily Thorsen) is being investigated, according to the local newspapers. Here's a translation of the original report: http://intertran.tranexp.com/InterTran?from=dan&to=eng&type=url&url=http://stiften.dk/article/20100210/AAS/702109933&Submit=Translate
David N. Brown says:
2010-03-09 18:06:22 "Denmark Paper", I was made aware of that yesterday, and revised my previous post accordingly yesterday. My take is that similarities to the news story further undermine the credibility of the document, especially since a) the story is dated later than the doc and b) does not name the suspect. "Isles", Certainly, we can't at this point be sure all of these are by "the" P Thorsen. The important point is, how can the people claiming he's missing be sure NONE of them are?
Joseph says:
2010-03-09 18:18:51 I completely expect that people have been emailing everyone and their brother to try to find out what's going on. It seems strange that the university would not come out and denounce any forgeries carrying their name. I guess it's possible they are intentionally not saying anything, because of the ongoing investigation.

Is story spread by Age of Autism true?

2010-03-08T08:47:58Z

In the last few days Age of Autism have made not one but two articles alleging that one Dr. Poul Thorsen, author of several studies debunking an autism-vaccine link, a) has disappeared, b) secretly worked for two universities at the same time when he wasn’t supposed to, c) sometime prior to his disappearance stole millions of dollars from former employer Aarhus University and d) faked data against an autism-vaccine link in exchange for money from the CDC/Big Pharma conspiracy. They currently appear to be bogged down by the fact that a) Thorsen has been located and b) other anti-vaxxers say a different doctor stole the money and disappeared. While I have a work in progress to give a thorough necropsy this train wreck, I deem it most important to provide a briefer analysis of just one facet: AoA’s source for this nonsense, a document allegedly released by a representative of Aarhus. (NOTE: I have a report that the link is no longer active! Fortunately, I saved the file on my computer.) On examination, I am satisfied of two things. First, this document is, substantially, a forgery. Second, it is not a single work, but a pastiche of what I believe to be at least three originally independent documents.

Certain portions of it can be excised from the rest, to form a whole which is in no way negative in portraying Thorsen. I offer the following as nothing more or less than a possible form of an original and authentic communication:

Aarhus University has decided to issue this statement in response to a number of requests on the part of CDC Denmark project partners. The Danish Agency for Science, Technology and Innovation (DASTI) has been a grant recipient as part of a cooperative agreement with the US National Center for Birth Defects and Developmental Disabilities, CDC, since 2001. The grant has been administered by Odense University Hospital and Aarhus University (AU) under the direction of Dr. Poul Thorsen. The grant has multiple components and involves collaborators at other institutions in Denmark, including the University of Copenhagen and SSI (Statens Serum Institut). This successful collaboration has resulted in numerous valuable scientific results, and many more are forthcoming.

In March 2009, Dr. Thorsen resigned his faculty position at Aarhus University. Aarhus University wishes to confirm that Dr Poul Thorsen no longer has any connection to Aarhus University, and that Aarhus University will not be able to collaborate with Poul Thorsen in the future. To the extent that other parties collaborating with Aarhus University wish to draw on Poul Thorsen’s expertise, Aarhus University will only accept such collaboration if it has the purpose of securing data or protecting the interests of participating researchers and funding agencies.

Provenance

Several details stand out to me as casting doubt on the authenticity of the document as an “official” statement from a representative of Aarhus University:

As presented at theflucase.com, it is accompanied by external text with numerous errors, most conspicuously: Aarhus is misspelled Aarhaus. An article published in 2003 is dated to 2002, and two authors are indicated instead of seven. “Side 2/2” appears in the body of the text.

The identified author of the document is “Jørgen Jørgensen, Managing Director”. I have been able to verify that this is a real person, currently employed by Aarhus. However, his most current title is “Director of Administration”.

It is also anomalous that “ Jørgen Jørgensen” is the only appearance of non-Anglic figures in the document. This is consistent with the body of the document originating outside of Denmark.

At one point, Thorsen is misspelled “Thomsen”.

A key statement that “Dr Thorsens double Full-time employment was unauthorised by Aarhus University…” contains three typos in rapid succession: “Thorsens” without apostrophe; “Full-time” capitalized unnecessarily, and “unauthorised” instead of “unauthorized”. The last is strictly speaking not an error but a variant spelling, consistent with an English-speaking author from the UK rather than the US. (Note that this would mean the forger is probably NOT a member of AoA!)

Allegations

The claims of wrongdoing currently being aired by AoA and others center upon two extended passages which strike me as tangential to and difficult to harmonize with the rest of the document and with each other. The first and obviously most serious is this: “In investigating the shortfalls associated with the grant, DASTI and Aarhus University became aware of two alleged CDC funding documents as well as a letter regarding funding commitments allegedly written by Randolph B. Williams of CDC’s Procurement Grants Office which was used to secure advances from Aarhus University. Upon investigation by CDC, a suspicion arose that the documents are forgeries. DASTI conducted an internal investigation of the authenticity of the documents and have filed a police report with no specific person named in the filing.” The last comment (italics added) is sufficient to establish that, even if the information is authentic, its presence in the document is not. Assuming that the event happened at all, there is no conceivable point in mentioning it here except to implicate Thorsen. If his ex-employer had had not had enough evidence to do that in a police report, they certainly would not be doing so here, where expressing even well-justified suspicion could easily provide cause for a defamation lawsuit.

The other major charges are that “(I)t has come to the attention of Aarhus University that Dr Thomsen (SIC) has continued to act in such a manner as to create the impression that he still retains a connection to Aarhus University after the termination of his employment by the university… (I)t has come to the attention of Aarhus University that Dr Poul Thorsen has held full-time positions at both Emory University and Aarhus University simultaneously. Dr Thorsens (sic) double Full-time (sic) employment was unauthorised (sic) by Aarhus University, and he engaged in this employment situation despite the express prohibition of Aarhus University.” It is noteworthy that these charges border on the mutually exclusive: On a certain level, emphasizing the “termination” of his employment is going to weaken a claim to illegitimate double employment. It is also striking that, even apart from the multiple typos, the text is quite awkward, with a great deal of redundancy- possible evidence of more lifting from originally separate sources.

The allegation that dual employment went against his contract is perhaps the most improbable aspect of the document. To anyone familiar with science and academia, this will seem counterintuitive at best: Employment at two or more institutions, as adjunct faculty, is pervasive, at Aarhus as it is elsewhere. Normally, it is only treated as an issue if the joint employment creates conflict of interest, eg. Working for two competing companies. The more specific references to “full-time employment” do much to allay suspicion: At the least, this suggests a separate and more complex issue than simply whether he was, and should have been, employed by a second university. But, it is still difficult to reconcile such accusations with the apparently positive tone with which the document closes. Thus, it is once again most probable that, even if we are dealing with a genuine communication, its present here is an interpolation.

The source

Thanks to help from commenters at Left Brain/Right Brain on an earlier draft of this article, I now have strong evidence of something I already suspected: that the allegations against Thorsen are taken from an earlier document which was NOT about him. The following story is apparently the source:

“Aarhus University has confirmed that a former head of research at its North Atlantic Neuro-Epidemiology Alliances department has committed possible fraud totalling up to 10 million kroner against several of the school’s research partners… Jørgen Jørgensen, Aarhus University’s rector, confirmed that police charges have been filed against the former researcher... Numerous applications for funding for the research were apparently signed with forged signatures. The scientist – who is reportedly living and working in Atlanta in the US – resigned from his post last March. But he allegedly continued to pass himself off as the head of the international project, which dealt primarily with research into the possible causes of autism. Aarhus University also claims that the researcher took another permanent position at Emory University in the US while still heading the Danish-based project…”

Many factors argue both against the identification of Thorsen as the suspect, and against the authenticity of the document:

The date of the story, February 11, is later than the internal date of “January 22, 2010” given in the document. If the document can be proven based on the story, it is certainly forged.

The strongest evidence that the document is based on the Feb. 11 story is that the story does refer to the suspect’s simultaneous employment at Aarhus and Emory, but does not state that this was against the rules or wishes of the former. This is consistent with the creator of the document embellishing upon an earlier source.

The story does not identify Thorsen or any other suspect. In contrast to the document, it does indicates that a suspect was identified by the university to the police.

It appears from the story that Aarhus was unwilling to name the suspect to the public, as would be expected in a sensitive and ongoing investigation. This would indicate, as I have said, that even if Aarhus suspected Thorsen of wrongdoing they would not publicly implicate him in the manner that the document does. Therefore, the document is probably forged.

The story does not identify the project in which the alleged fraud was committed. It suggests a project far more recent than the 2003 date of the paper that AoA et al dispute.

According to Thorsen’s professional biography, from 1997-2000, he worked as a “visiting scientist” at a CDC office in Atlanta. However, there is no evidence that he currently lives or works there. Therefore, he does not match the description of the suspect.

His biography reports that he was an “associate professor” at Aarhus, which does not appear consistent with the document’s allegation that he had “full-time employment” at Aarhus.

His biography, which is dated Jan 22, the same date that the document was allegedly composed, indicates that he was employed by Aarhus only through 2008. Therefore, the charge against the suspect of “ continu(ing) to pass himself off as the head of the international project” does not apply to him. Even worse, the document can be proven not to be a response to a claim that Thorsen made about himself at or around the time the document was allegedly written. Even the statement that he resigned in March 2009 does not fit with the dates in his biography, though this could be harmonized simply as a kind of “rounding”.

It can be added that these allegations, dubious as they are factually and contextually, fall far short of the allegations made by AoA and their immediate source. It does not say that Aarhus “`expressly prohibited’ Dr Poul Thorsen from working for a second university, Emory.” It does not say that, “The double role of Thorsen came to light after the university detected a shortfall in funding.” It does not say that “The university had paid out millions of crowns in advance to Thorsen”, or in any way suggest that he misappropriated funds for his personal use. And it certainly does not say that “Thorsen vanished in March 2009”!

And really, what was this supposed to prove? When someone literally or proverbially take the money and run Venezuela, the logical explanation is not “hidden bias in the studies” that will “undermine the scientific case for thiomersal“! It’s greed and maybe sex and/or drugs! Why is it that, for all their outward displays of cynicism, antivaxxers can’t seem to accept that people can be greedy, dishonest bastards without help from Big Pharma?

Last edited by Kevin Leitch to remove all accusations of hoax by anyone person or organisation. LBRB apologises to anyone person or organisation, including Age of Autism who was named in this piece as being perpetrators of a hoax.

3 people like this post.

24 commnent(s) for this post:

Kristjan Wager says:
2010-03-07 09:59:59 It seems strange that it's not possible to locate said document at the university's website. I am looking into the issue, and will post something about my results.
Kristjan Wager says:
2010-03-07 10:26:03 Looking through the document - where is Aarhus misspelled as Aarhaus? Can't seem to locate it. What makes me suspicious is the fact that throughout the document Aarhus Universitet is referred to by its full name, even though the abbreviation (AU) has been mentioned earlier. Also, this document doesn't seem like a document which would be sent out by a Danish university. And why didn't it make the news in Denmark? There are a lot of warning signs on this one. Oh, well - we'll hopefully soon find out.
Laurentius Rex says:
2010-03-07 13:24:25 The Hallmark of a good forgery or hoax is that it is essentially uncheckable. This particular piece of malice could easily be checked by correspondence with the said University, who I hope would wish to instigate criminal proceedings against whoever is perpetrating the fraud as Universities do take there reputations seriously in my experience.
Ken Reibel says:
2010-03-07 15:21:01 Here's a suspicious article from the Copenhagen Post Online, dated Feb. 11, 2010. The money quote:
Jørgen Jørgensen, Aarhus University’s rector, confirmed that police charges have been filed against the former researcher and that it concerns a sum of around 10 million kroner. Numerous applications for funding for the research were apparently signed with forged signatures.
Note that the article doesn't name a suspect.
Ken Reibel says:
2010-03-07 15:42:16 Update: The rector of Aarhus University is Lauritz B. Holm-Nielsen. If I was Danish, and was fabricating a hoax, I'd come up with a better name than Jorgen Jorgenson.