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AOL Health interviews Jeanette O’Donnell

12 Mar

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

12 Mar

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.

AOL Health interviews Dora Raymaker

12 Mar

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?

Barbara Loe Fisher’s lawsuit against Paul Offit dismissed

11 Mar

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.

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

11 Mar

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.

New LBRB Feature

10 Mar

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 https://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

10 Mar

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.

An open letter to Jenny McCarthy

9 Mar

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.

Lawsuit against alternative medical practitioners Usman and Rossignal

5 Mar

A lawsuit has been filed in Chicago claiming that a child has been harmed by the treatments prescribed by Dr. Dan Rossignol and Dr. Anju Usman.

This is being reported in a story, Father of 7-year-old autistic boy says treatment harmed son. (also now on the Chicago Tribune’s website)

Doctor’s Data has also been named:

Coman also alleged that Doctor’s Data Inc., the St. Charles laboratory that performed the tests Usman and Rossignol used to justify these treatments, was negligent for using an “improper method” of testing.

We here at LeftBrainRightBrain have commented many times about the concept of “challenge” testing to “prove” heavy metal toxicity.

The suit spotlights a test often used to diagnose metal poisoning in children with autism. To conduct the test, doctors give children a chelation drug that forces the body to let go of some of the metals that exist in everyone – healthy or sick – in trace amounts. Those metals show up in urine, which is sent to a lab for screening.

In the case of Coman’s son, Doctor’s Data then compared those drug-provoked results to a reference range calculated for people who had never been given a chelation drug. Based on this apples-to-oranges comparison, Coman’s son was found to have elevated levels of lead, aluminum, tin and mercury – some with results Doctor’s Data listed in the “90% range of metal contamination,” according to the lawsuit.

According to the story, there are no comments from Doctor’s Data, Dr. Rossignol’s office nor Dr. Usman’s office.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

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