Action For Autism

In the blogosphere

The latest issue of Communication, the members magazine of the National Autistic Society is out and it includes this article by me. To read the rest of the magazine you really need to join the NAS here or here for overseas membership. and to any NAS members who have come here from the magazine article, Welcome!

In the blogosphere

Blogs are online diaries or journals. Of course the content varies enormously. But there are usually a few issues that are being widely discussed in the blogosphere. President  Obama’s economic package includes extra funding for scientific research including $60 million for autism research. This is discussed by Virginia Hughes on her blog.  Hughes is an accomplished science writer who often contributes articles to the Simons Foundation Blog.  ”A social campaigning site in the USA, http://www.change.org/ hosts an autism blog http://autism.change.org/ The writers are veteran autism blogger and parent Kristina Chew and autistic adult Dora Raymaker.

Of course, the big news in America has been the verdict in the vaccine court that there is no connection between MMR and autism. There is very little neutral ground on this issue. Those who believe that vaccines do cause autism will find support for their views on the Age of Autism If, like me you discount any connection between vaccines and autism, you will prefer Left Brain Right Brain.

For a more dispassionate view I often turn to neuroscientist, Steve Novella’s blog. See this example  for his take on a recent study of hyperbaric oxygen therapy for autism. Steve also collaborates with a number of scientists and clinicians on a blog called Science Based Medicine which often discusses autism research. Even when it is not autism specific it is often relevant as with this discussion on conflicts of interests in research. 

But the real attraction of blogs is writing them. Anyone can write one and publish it on the web. You do not need any programming skills, just the ability to type and something to say. Other people can read your blog and leave comments and every time you post a new article it moves to the top of your page. So blogs are always changing to show what is uppermost in people’s minds. Some of my favourites are written by parents or people on the spectrum.

Sharon is a parent in Northern Ireland who writes about life, family, autism and home education at the Family Voyage.

Casdok’s blog is about her non-verbal adult son and their struggles to obtain decent provision in England.

For an autistic view on life one example is NAS board member Larry Arnold’s blog 

And finally there is you. Most of the autism blogs are based in America. But the NAS membership is as well informed and opinionated as any autism constituency here or abroad. We do not always agree but our discussions are always invigorating. I wish that more of you would start blogging and that the NAS could find a way of linking us together like the autism hub.   Perhaps the next issue of Communication could include a guide to writing on the web to help get people started.  And it is not just about blogging. I am just finding my feet on Face Book and now somebody wants to follow me on Twitter!

 

 

May 29th, 2009 Posted by Mike | Communication, National Autistic Society | 6 comments

A Broken Trust: Lessons from the Vaccine–Autism War

11 years after Andrew Wakefield launched the MMR/Autism Hoax at a press conference to publicize his paper in the Lancet vaccination rates in the UK have yet to recover and measles is once more endemic in the UK. We had 1348 cases last year compared to 56 cases in 1998. In the USA MMR coverage remains high but measles is making a comeback courtesy of anti-vaccine enclaves amongst the “worried well” who regard autism as a more serious threat than the infectious diseases that, thanks to vaccines, they have never experienced. In the USA 25 percent of adults believe there is a connection between vaccines and autism. They are more likely to blame thimerosal, a mercury based preservative that used to be widely used in childhood vaccines, (but was never in the MMR triple vaccine) and other alleged pollutants that exercise Green Our Vaccines campaigners.

This situation persists despite the fact that Wakefield’s hypothesis is thoroughly discredited. The overwhelming opinion among scientists and doctors, backed by numerous scientific studies, is that there is no evidence of a connection between MMR and autism. A similar situation pertains with regard to thimerosal containing vaccines (TCVs). Moreover it is now 7 years since all routine childhood vaccines in the USA became thimerosal free. The growth of autism has not abated. This alone suggests that vaccines are not responsible.

Liza Gross discusses the reasons for this in an article published today by PLoS Biology, an open access journal, freely available online. In the article, entitled “A Broken Trust: Lessons from the Vaccine–Autism Wars,” Gross draws on the work of medical anthropologist Sharon Kaufman in an effort to understand

how the idea of a vaccine–autism link continued to gain cultural currency even as science dismissed it.

It is interesting to note both the similarities and the differences between the British and American responses. In the USA the authorities invoked the precautionary principle to remove thimerosal from childhood vaccines. The American Association of Pediatrics (AAP) issued a statement to reassure the public that

This merely served to convince a section of the public that there must be something wrong based upon the nostrum that there is no smoke without fire. In the UK health officials took an opposite stance in relation to MMR, refusing Wakefield’s call for the MMR vaccine to be split into separate shots because there was no evidence to support his claims. Rather than reassure the public, this tough stance was presented as evidence of yet further government intransigence in the face of a potential health disaster and is best understood in the context of the contemporaneous controversy over mad cow disease and the threat posed to humans from contaminated beef.

Kaufman argues that the hold which these narratives exert on the public consciousness goes a long way to explaining why the subsequent efforts by authorities both in the UK and the USA to marshal and present a wealth of scientific evidence has failed to seriously dent public perceptions. 

Gross talked to Paul Offit, who correctly pointed out the need to bridge the gap between public and scientific perceptions of risk. But public understanding has always lagged behind science. The difference today is that public trust in science has been eroded. And the technological revolution that is the World Wide Web means that anyone can go online and find competing voices that are just as “sciency” as the experts we used to rely on. But these online health gurus make their living by being persuasive, not necessarily by being right.
What they have is a story with more narrative power than the strictly factual accounts of their scientific gainsayers. Offit understands this. It is why he has turned down requests to appear on any show with Jenny McCarthy, who uses her celebrity status to promote the anti-vaccine message.

‘‘Every story has a hero, victim, and villain,’’ he explains. ‘‘McCarthy is the hero, her child is the victim—and that leaves one role for you.’’

Gross ends with Rachel Casiday, a medical anthropologist in the UK who believes that the answer is for scientists to counter attack with narratives of their own.

Casiday suggests providing an alternative, science-based explanation or relating emotionally compelling tales about counter-risk—such as helplessly watching a young child die of a vaccine-preventable disease—in the same narrative format.

My only criticism of this article is that it can be seen as perpetuating a myth, a narrative if you like, about science being beyond most people. We rely, not upon our understanding, but upon the expert status of others in order to guide our actions. When experts are competing for our attention it is those with the most compelling narratives who prevail. Therefore the real experts need to beef up their image and their presentation skills and beat the self-styled experts and lifestyle gurus at their own game. 

There is another story that needs to be told. The anti-vaccine movement did not emerge without challenge. The real experts may have missed the signs and failed to counter the contrarians until it was almost too late. But a number of parents of autistic children together with autistic self advocates have been meeting the challenge of the anti-vaccine movement online on email lists, in newsgroups, blogs and the latest social networking sites.

We do not think of autism in terms of epidemics and public health disasters. We want help to deal with the consequences of autism rather than its alleged causes. We believe that social models of disabilty have at least as much to say about autism as medical models. We need to celebrate and encourage autistic strengths while acknowledging the very real difficulties that face autistic people and their families. 

Some of us have a professional as well as a personal involvement in autism. But most of us do not. That has not stopped us from grappling with the science in order to marry the narrative of our lives or our children’s lives to the scientific evidence in order to create new stories. If the professionals would take heed of our stories they would be better placed to challenge the pity party mentality of those who would demonize both science and autism to the detriment of both. And, who knows, perhaps together we can create positive outcomes for our narratives. 

May 26th, 2009 Posted by Mike | journalism, science, vaccines | 6 comments

Chicago Tribune takes on Geiers’ junk science

Three years ago I wrote a post, Evidence of Pharm, which began, 

When scandalous events come to light the local community are always agreed. “We had no idea.” “He was such a pillar of the community.” “They babysat our children.” “They always gave generously to charity.” Etc.

So how will the good people of Silver Spring, Maryland, USA react when some of their own are finally exposed for using bad science to perform medical experiments on helpless children by pretending they have a cure for autism and persuading the parents to claim back the cost from their medical insurance?

It would be nice if they could read it first in the local press. So I am copying this to the editors of the:

Silver Spring Gazette: jgrbach@gazette.net
Silver Spring Voice: bond@takoma.com
Montgomery County Sentinel: editor-mc@thesentinel.com

All that follows is already in the public domain. All I have done is provide a summary. The editors can check it themselves or email me with any queries about sources.

The editors did not respond and the family firm of Mark and David Geier continued to perpetrate medical malpractice on children from their home in Silver Spring, Maryland, USA. I wonder if these editors will respond to recent reports in the Chigago Tribune under the headlines, ‘Miracle drug’ called junk science and Physician team’s crusade shows cracks. The Chicago Tribune has done a great job, no doubt benefitting from the detailed research into the Geier’s activities published by Kathleen Seidel on her Neurodiversity blog. They have also unearthed some real gems themselves.

David Geier told the Chicago Tribune that leading autism specialist, Simon Baron-Cohen, supported ther use of Lupron to treat autism. Baron-Cohen told reporters that

“The idea of using it (Lupron) with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,”

When

Four of the world’s top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.

Mark Geier responded by saying

that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

Lupron is a powerful drug that blocks the production of sex hormones. The Geiers use it on autistic children at ten times the dose used to treat the legitimate but rare condition of precocious puberty. It is also used to treat prostate cancer and to chemically castrate sex offenders. The long term effects on healthy children are unknown but are unlikely to be good. Its use on autistic children has no scientific backing. It is untested. It has no known therapeutic benefits and the potential for harm.

While Lupron might not have a significant impact on very young children — beyond the discomfort of daily injections — they said continuing treatment into the teen years is another matter. Lupron would put puberty on hold for those children.

A teenage boy “becomes a kid again,” said Dr. Alan Rogol, a pediatric endocrinologist at Riley Hospital for Children in Indianapolis. “He stops making testosterone. They don’t grow as well. It is not good for their bones. They would come to a dead stop.”

Meanwhile the Geiers continue to open clinics across the USA offering this “treatment” and are welcome speakers at fringe autism conferences. The lack of regulation for so-called alternative (aka quack) therapists in the USA makes it unlikley that the authorities will clamp down on their business. But the high cost of treatment is often borne by patients’ medical insurance. This has led one recent convert to the Geier’s Lupron treatment, Mayer Eisenstein, to have second thoughts.

Eisenstein said he would not treat teenagers with Lupron, citing insurance difficulties. “It is easy to explain a 4- to 5-year-old with high testosterone [to an insurer]. It falls under precocious puberty,” he said. “But with an 11-, 12-year-old, it becomes a big fight.”

Eisenstein has visibily cooled towards the Geiers during interviews with the Chicago Tribune over the last few days. The Tribune’s interest has unearthed some unsavoury aspects of his own medical practice which he doubtless would have preferred not to see featured in their pages under the headlines, Autism doctor: Troubling record trails doctor treating autism and Dr. Peter Rosi places blame on some parents for their babies’ deaths

Let us hope that the credit crunched insurance industry will do what the regulatory authorities have so far singularly failed to do. Their refusal to underwrite the Geiers’ junk protocol would protect children as well as their balance sheets. Meanwhile I hope that the Chicago Tribune’s reports will at last provoke the authorities into taking action to end the Geiers’ reckless endangerment of children.

One thing it will provoke is a frenzy of denial and accusations from the usual suspects over at Fromage of Autism (Yes. They are that cheesy) and the rest of the biomeddlesome autism fringe. But there is plenty of support for the Chicago Tribune as well. Here are a few to be going on with.

Left Brain Right Brain 
autism.change.org 
Photon in the Darkness
Respectful Insolence 
Mindless Mommy 
Neurologica
Chicago Moms 

Finally, do take the time to email the reporters at the Chicago Tribune and thank them for bringing this outrage to a wider audience.

pcallahan@tribune.com 

ttsouderos@tribune.com 

May 22nd, 2009 Posted by Mike | Lupron, Quackery, journalism | 3 comments

Autistic skill or social deficit?

Research from the Yale University Child Study Center provides further evidence that autistic children view the world in markedly different ways than their non autistic peers. They were specifically looking at differences in attention to biological movement. According to the announcement by the National Institute of Health, who helped fund the study:

The researchers borrowed a technique from the video game industry, called motion capture. They then reduced the movements to only points of light at each joint in the body, like animated constellations. These cartoons played normally — upright and forward — on one half of the screen, but upside-down and in reverse on the other half. The inverted presentation engages different brain circuits and is known to disrupt perception of biological motion in young children. The normal soundtrack of the actor’s voice, recorded when the animations were made, accompanied the presentations.

You can view some of these animations in the New Scientist report on line 

Yale recruited a sample of autistic toddlers and two control groups - normally developing toddlers matched for age and non-verbal intelligence and developmentally delayed toddlers matched for age and verbal intelligence. Then they showed them the animations and measured their attention to the biological and non biological animations.

Virginia Hughes, writing for the Simons Foundation Autism Research Initiative, tell us that

the toddlers with autism showed no preference for the upright figure when watching the peek-a-boo animations, looking at it 50.7 percent of the time, compared with 58.9 percent of the time for the developmentally delayed group and 62.7 percent for typical controls.

When watching the pat-a-cake animations, however, the autism group looked at the upright figure 65.9 percent of the time, significantly more than at the inverted figure. The pattern for the two control groups remained the same.

Not surprisingly non-autistic children showed a preference for cartoons played normally. Autistic children seemed not to have a preference, except for the pat-a-cake animation. The study team realized that this was because the movement of the dots of light synchronized with the clapping sound in the sound track. So they looked for less obvious audiovisual synchronies (AVS) in the other four animations. The AVS was less powerful in these other four animations than in the pat-a-cake example but still they found

“Audio-visual synchronies accounted for about 90 percent of the preferred viewing patterns of toddlers with ASD and none of unaffected toddlers,” said Jones. “Typically-developing children focused instead on the most socially relevant information.”

To test if the autistic toddlers were attending to AVS in preference to biological movement they recruited a fresh set of autistic toddlers and devised two more animations whose AVS was stronger than the unintended AVS in the four animations but less than the powerful AVS of the pat-a-cake animaton. If autistic attention was related to the strength of AVS they should be able to predict the new cohort’s preferred viewing patterns. And they did.

The study provides strong evidence that autistic toddlers do not have a preference for biological movement but are drawn to AVS that are ignored by non autistic peers and are not immediately apparent to research scientists without the assistance of computer analysis. This is potentially both a benefit and a deficit. Elizabeth Moon has written a novel, The Speed of Dark, about autistic adults whose ability to detect patterns and synchronies was valued while their need for accommodations in order to exercise this ability was decried. The novel’s strength derives in part from the author’s ability to exploit the dramatic tension between these two conflicting positions. 

In contrast the present study does not even begin to acknowledge the potential strengths of this talent for detecting synchronies. Instead it focuses entirely on the negative aspects. The authors suggest that because attention to biological movement is such a robust feature, occurring across species and persisting in humans who are blind or cognitively impaired, its apparent absence in autism is enough to explain all the familiar impairments. 

The authors explain it thus

Typically developing human infants preferentially attend to biological motion within the first days of life1. This ability is highly conserved across species2, 3 and is believed to be critical for filial attachment and for detection of predators4. The neural underpinnings of biological motion perception are overlapping with brain regions involved in perception of basic social signals such as facial expression and gaze direction5, and preferential attention to biological motion is seen as a precursor to the capacity for attributing intentions to others6.

There is a problem here. Klin et al argue that autistic subjects do not exhibit preferential attention to biological motion. Then they up the stakes dramatically with their reference to the ability to attend to biological motion. Ability and preference are not the same thing. Then comes another giant leap, suggesting that because of neural overlap with brain areas associated with facial expression and gaze direction, a preference for biological motion is somehow responsible for theory of mind.

So, rather than being an ability, enhanced awareness of audio-visual synchronies is a disability because it comes at the expense of attending to biological motion, which is believed to be critical for bonding with a caregiver, recognizing danger , developing social cognition and acquiring theory of mind.  It may be that Klin et al are right and this skill is critical. But it is a bit of a leap to suggest that this is what their experiment tested for and that it is lacking in autistic children. If it is so highly conserved across species, the fact that it is not evident in autistic subjects in this experiment suggests not that it is absent or weak, rather that it is being overridden by higher brain functions. If it is so basic to survival that snails have it, its lack should present as a catastrophic deficit in humans. It would be interesting to devise an experiment to discover in what circumstances autistic children (and adults for that matter) do exercise a preference for biological movement. If it is so important we should be looking for ways to encourage it that do not diminish the achievements of autistic children in attending to patterns and synchronies in their environment.

Klin’s research is valuable. It is a pity that the commentary on the results overstated its importance and sought to overplay the potential disabling effects for autistic people while failing to acknowledge any potential strengths that might derive from synchronous thinking. Research that adds to our understanding should not need to be dramatized in this way.

Footnote

Morton Ann Gernsbacher has written some trenchant pieces about how preconceptions can influence the interpretation of research results. For example

Using the Deese-Roediger-McDermott “false memory” paradigm, two groups of participants were presented auditorily with lists of semantically related words (e.g., bed, rest, awake, tired, and dream), and later asked to discriminate between words they’d heard and words they hadn’t heard, including words that were semantically associated to words they’d heard (e.g., sleep). As shown in Figure 2, the green group demonstrated significantly better memory discrimination than the purple group; the green group was less likely to falsely recognize words they hadn’t heard, despite the false words’ semantic association with words they’d heard.

The green group’s better memory discrimination was attributed to their mentally representing words “in an aberrant manner,” even though a concurrent — and direct — test of semantic clustering found no differences between the green and purple groups. The green group’s aberrant semantic mental representations was hypothesized to stem from “anatomic abnormalities … or as a result of an as-yet unknown pathology.”

When another research team reported no difference between green- and purple-type participants in either false recall or false recognition, the authors of the study that had observed the green group’s better discrimination interpreted the other study’s lack of a between-group difference to the green group also having “frontal-executive impairment.”

No prizes for guessing that the green group were autistic. In another article she points out that if you are autistic:

having a thicker cortex than someone who is not autistic is considered bad (Hardan et al., 2006) — and having a thinner cortex than someone who is not autistic is also considered bad (Chung et al., 2005; Hadjikhani et al., 2006a, 2006b). Your thicker cortex might be a function of higher fluid intelligence (Dawson et al., 2006; Fjell et al., 2006); your thinner cortex might be a function of better memory retrieval (Sowell et al., 2001). It doesn’t matter: If you’re autistic, having either a thicker or thinner cortex is just considered bad.

May 12th, 2009 Posted by Mike | neuroscience, research | 23 comments

Nothing About Us Without Us

Nothing About Us Without Us 

This familiar slogan from the disability rights movement is being raised increasingly by autistic rights activists.  Autistic people have a history of self-organization in groups like Autism Network International (ANI), Autistic Self Advocacy Network(ASAN), and more recently the London Autism Rights Movement.  While the Internet has made it easier for individuals to connect both locally and on a wider scale autistic people also come together in the physical world. Autreat has seen a regular gathering of autistic people and their allies since it was launched by ANI in 1996 and, for those unable to make the trip to America, a group of autistic people based in the UK launched Autscape in 2005. Alongside these annual events there are numerous local groupings with activities ranging from social gatherings to serious campaigning.

When you combine physical presence with a wired community the results can be impressive.  Two years ago the NYU Child Study Centre launched the now infamous “Ransom Notes” poster campaign. It promoted the idea that autism along with other neurological disorders was kidnapping our children. Bloggers responded with outrage. ASAN stepped in to coordinate the protests. 22 disability organizations from around the world joined the protest and NYU dropped the campaign.

Earlier this year Action for Children ran a TV advertising campaign that presented autism as a monster that trapped children. The blogosphere was again quick to respond. A parent launched a Face Book campaign which soon attracted a thousand followers, one of whom enlisted the support of Tony Attwood, and organized complaints to the Advertising Standards Council. Action for Children stood by their campaign, which nevertheless ended a week ahead of schedule.

Mention of Tony Attwood reminds me that he is at present on the receiving end of a campaign by ASAN who have launched an online petition to express their opposition to his continuing association with Families of Adults Affected by Asperger’s Syndrome (FAAAS) which has moderated its name (it used to be known as Families of Adults Afflicted with Asperger’s Syndrome) if not its stance that wives and children are the victims of men who use their Asperger Syndrome as an excuse for unreasonable behaviour towards their families. 

In this case I am not so certain that public protest is the way forward. It is one thing to use the politics of protest to confront high profile images and messages that damage the public perception of the autistic community. It is quite another to demand that someone change their mind based on public opinion. That requires debate and discussion. I agree with ASAN that Tony Attwood ought to disassociate himself from FAAAS and their use of his name on their website. How we go about it is a question of tactics not principles 

This brings me to my final point. How can autistic self advocates position themselves to influence decisions before they are taken instead of having to protest about the consequences of those decisions taken without them? And, bearing in mind the well documented difficulties that autistic people have navigating the nuanced world of social communication, what can we do to help them? Maybe it is they who can help us. Autistic plain speaking could cut through the doublespeak that bedevils the political process.

In the USA the Inter-Agency Autism Coordinating Committee (IACC) that advises federal agencies like the National Institutes for Health (NIH) on priorities for autism research invited members of ASAN onto the committee and took account of their representations. ASAN have also had meetings with the relevant advisors in President Obama’s policy teams.

Things are happening in the UK as well. Parliamentary support for the Autism Bill led to the government setting up an external reference group chaired by National Autistic Society (NAS) chief executive, Mark Lever. The vice chair was autistic adult, Anya Ustaszewski. The input of the autistic adults on the group has helped to shape the public consultation launched by the government that will lead to statutory guidance for local authorities on meeting the needs of adults on the spectrum.

The NAS has come a long way in transforming itself from a parent led group to one that takes autistic adults seriously. A number have been elected to the NAS Council and one serves as a member of the board of trustees. But there is still a lot to do. Even quite able autistic adults can be excluded because they cannot cope with big meetings or face to face negotiations in committees. For others, their difficulties with communication make it hard for them to get their message across. And those with additional learning difficulties are even more disadvantaged. 

The good thing is that autistic people are demanding to be heard. Governments, along with other public bodies and autism charities have declared a willingness to listen. No doubt there will be future improvements to the wired world that will help the process. But people have to be willing to create those opportunities. We could start by taking seriously the slogan with which I began this article.

Nothing About Us Without Us.

May 10th, 2009 Posted by Mike | adults, autism advocacy, politics | 31 comments

It’s different for girls

One of the puzzling things about autism has always been the disparity between the sexes. Boys have always been more susceptible than girls. This is not in itself unusual. There are gender differences affecting a whole range of conditions and, if this New York Times article is correct, men frequently come off worse.

But if boys are more susceptible you might have assumed that as the severity of the condition increase this disparity would become more marked. In fact you would have assumed wrong. According to this source:

The greater severity and lower frequency of autism in females has been cited as evidence for a multifactorial polygenic mode of inheritance with differential loading by sex, which predicts greater severity in the less frequently affected sex.

Greater severity is usually taken to include severe cognitive impairment as well and the greater the degree of cognitive impairment the closer the ratio between boys and girls. But there are problems with this model. David Skuse has argued that the association between cognitive impairment and autism is not because they share a common cause but simply because if you have both conditions you are more likely to be seen by a clinician and get a diagnosis. More able people may be just as autistic but have coping strategies that enable them to avoid a diagnosis. And if girls have better coping strategies than boys they will be disproportionately overrepresented amongst autistic people without cognitive impairment who are missed by the system.

Last week Woman’s Hour broadcast a segment on Asperger syndrome took up this argument and suggested that there may be as many girls as boys on the spectrum. Most of them are not getting a diagnosis because they present in ways that are unfamiliar to clinicians who are used to seeing the condition in boys. The programme is no longer available but Sunday’s Observer carried a two page spread on the same story.

Experts like Judy Gould and Tony Attwood cited by the Observer still believe there is a gender difference but they estimate that it is only 2.5:1. Asperger girls may be more passive than boys. They do not assert their difference or draw attention to themselves. Instead they observe and copy other people’s behaviour. Their special interests may be intense but are also likely to be more socially acceptable; reading fiction, following soaps, celebrity culture – the sort of thing that lots of other girls do – and so they do not stand out.

Conformity comes at a cost. The Observer quotes Tony Attwood’s estimate that 20% of anorexic girls are undiagnosed autistics. Then there is self harm and other evidence of psychological stress. There are important differences between men and women. They need to be understood and respected. But it does not help autistic women if autism is described as an extreme male brain syndrome. The Observer ends by quoting professor David Skuse who believes that:

if we can prove the ratio of boys to girls is as high as many of us suspect, it would be as significant a milestone in this field as the discovery that the condition is on a spectrum.”

 

This post is also appearing on Left Brain Right Brain. You are invited to join the discussion there.

April 14th, 2009 Posted by Mike | epidemiology, news | no comments

OPEN YOUR EYES TO AUTISM - London Rally

There was a protest march in London on Saturday. I am not talking about the tens of thousands who were protesting over the economic recession in advance of Wednesday’s G20 Summit in London. There was another march that day protesting about autism. I did not attend, but from the photos posted online it looks like a few hundred parents, children and their supporters turned up to march from the Embankment to a rally in Trafalgar Square.
The march was called by Open Your Eyes to Autism, “a parent’s initiative” that has strong links with The Autism File. This is a magazine founded by Polly and Jonathon Tommey to promote biological interventions for autism, especially dietary ones. They were the first parents in the UK to try secretin on their child. I once shared a platform with Jonathon Tommey at a conference for health care professionals. Lisa Blakemore-Brown was also there and spoke about the use of Munchausen’s by Proxy to discredit parents who insisted on biomedical treatments for their autistic children. I felt at the time that both had valid insights, but these were insufficient to support the weight of their arguments.
Still, it made for an interesting conference in which medical professionals, attending as part of their continuing professional development, were exposed to the alternative views promoted by Tommey and Blakemore-Brown alongside more orthodox speakers. My contribution was an early attempt to promote the idea that health care professionals can make a positive contribution to the support of autistic people and their families if they start out by accepting the autistic person instead of trying to cure them. You can read it here.
So I was interested to see that despite its biomedical, anti-vaccine sympathies the march on Saturday also welcomed representatives of the London Autistic Rights Movement, including Hub blogger Casdok who attended with her adult son and a placard that read “Acceptance Not Cure.”
This may be because the march seemed to offer something for everybody. Its flyer called for

Improving services for autistic children and adults.
Recognition of the endemic nature of autism worldwide.
Better educational services.
Valid Research to establish cause.
More support for autistic adults.
More help with the transition from child to adult:
Support for Dietary interventions on the NHS.
Recognition of the role of environmental triggers in ASDs.
And much more…

In this the march resembled its larger counterpart on the day. Both were coalitions who could agree upon some issues and disagree about others. The key questions yet to be answered are, “Should we try to build a coalition in which the points of agreement outweigh the points of disagreement? If the divide is too great can we at least maintain a constructive dialogue while pursuing our distinct agendas?” I am open to suggestions on both questions.

March 30th, 2009 Posted by Mike | autism acceptance, autism advocacy, campaigns, politics | 8 comments

Positive autistic outcomes in Utah

I have commented in the past on inflated figures for the costs of autism across the lifespan. These figures are sometimes used to justify calls for mandatory financial coverage of treatments and therapies that are supposed to normalize behaviour. The alternative is an alleged economic meltdown as the putative autism epidemic places an intolerable burden on the economy.

Recent research suggests that adult outcomes do not necessarily match this doom-laden scenario. A study from the University of Utah has looked at what happened to young people from an earlier study now they are all adults. They followed up 41 of the original 241 autistic Utahns. All had a measured IQ in childhood that was greater than 70. According to the press release

For the follow-up study, the researchers assessed the participants’ overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual’s overall social outcome was assigned to one of five categories: very good, good, fair, poor, and very poor:

• Very good meant the person held paid employment without extra support to perform job duties, had important social relationships, and a high independence in daily life.
• Good indicated the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.
• Fair reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities but no particular friends.
• Poor showed the need for a high level of support, such as a residential living facility and planned daily activities for people developmental disabilities. Those in this category had no friends outside their residential living arrangements.
• Very poor meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

The original study, published in 1989, used DSM III diagnostic criteria. DSM III used very narrow criteria based on Kanner’s descriptions of autism and excluded many of those who would qualify for a diagnosis of autistic disorder using modern DSM IV criteria along with all those who currently meet DSM IV criteria for PDD-NOS and Aspergers disorder. So, even though the follow up looked at outcomes amongst the most able subjects of the original study (those with IQ >70), it is reasonable to surmise that all would be regarded by today’s standards as severely autistic.

Yet nearly half of them enjoy good or very good outcomes, requiring very little support. If the researchers had followed up the entire cohort, including the two thirds with an IQ < 70, no doubt there would be many more with a poor or very poor social outcome. However most people identified with autism today are at least as able as the subjects of the present study. So how did they achieve such positive outcomes in Utah?

My thanks to Dora Raymaker at autism.change.org for linking to a possible explanation. I had forgotten that Utah is home to the Church of Latter Day Saints (LDS). LDS culture is supposed to be inclusive of people with disabilities and fosters close knit communities with supports that bridge the generation gap. This is not to say that there is no downside to being autistic in Utah. According to the Salt Lake Tribune

Still, about half of the adults in the study are on Medicaid, live with their parents and need a lot of help from family or social service agencies with jobs, relationships and personal care. A sizeable number have had trouble with the law or have other medical disorders, from anxiety and depression to trouble sleeping.

And in another story the same reporter writes of a family where an adult son is still dependent on elderly parents.

At ages 68 and 62, Carl and Valerie Jensen have asked another son to care for their youngest when they die.

The Jensen family are the son’s main source of social contact, along with a group of friends he made in special education classes in high school. The social support he once had through his LDS ward is largely gone now that his peers have moved on and married.

Despite these caveats it does seem that if society can be organized in an autism friendly way then autistic people can live fulfilling lives without bringing the economy crashing down. We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure.

March 24th, 2009 Posted by Mike | adults, autism acceptance, research | 5 comments

Autism Omnibus: MMR - the evidence.

Throughout the entire Autism Omnibus Proceedings (OAP) the decision about whether or not vaccine strain measles virus had caused autism depended on a simple, verifiable fact. Could the petitioners show that vaccine strain measles virus had persisted in the bodies of autistic children? Special Master Hastings who heard the initial test case of Michelle Cedillo devotes 45 pages of his Decision to reviewing the evidence for this. (pages 40 -85)

Specifically, the petitioners’ primary expert concerning the causation of autism,  Dr. Marcel Kinsbourne, made it clear that his opinion in any individual case would depend upon the existence of a reliable laboratory finding of persisting vaccine-strain measles virus in the body of the individual in question. (Tr. 1180A, 1183A, 1196A.) Similarly, the petitioners’ primary expert concerning the causation of chronic gastrointestinal dysfunction, Dr. Arthur Krigsman, also specified that his opinion in any individual case would depend upon the existence of such a reliable laboratory finding of persisting vaccine-strain measles virus in the individual. (Tr. 531-33A, 538A.)

A Reliable Test for Persistent Measles Infection?

A logical consequence of this is that petitioners would have an interest in establishing the reliability and validity of the testing carried out by Professor O’Leary’s team at the Unigenetics Laboratory in Ireland on biological samples taken from Michelle Cedillo and other autistic chidren. Equally, the respondent would wish to challenge its reliability and validity. In addition to the testing carried out for the purpose of litigation the O’Leary lab had also carried out testing for research that was peer reviewed and published in academic journals. Of particular relevance was the paper by Uhlmann et al (2002) in which O’Leary’s team utilized the same PCR techniques that were used to test Michelle Cedillo’s sample.

In order to find measles RNA in the tissue samples they had to use a technique known as polymerase chain reaction (PCR). In PCR testing you use a primer that is known to react with your target material to amplify the target material, in this case measles RNA. But you have to perform additional tests to ensure that your primer is identifying measles RNA and only measles RNA. You have to determine that your primer is specific to the task and that there are no false positives.

When D’Souza et al (2006) tested autistic children’s blood for measles RNA using the same methodology as described in the Uhlmann paper they found lots of measles. They found it in the autistic children and the non-autistic controls. So they performed additional tests which filtered out most of the false positives. Then they carried out a “gold standard” test known as sequencing which eliminated all seven of the nine remaining samples which were able to be successfully sequenced. They concluded that none of their samples contained measles virus. They also concluded that the Uhlmann study was equally unlikely to have detected measles RNA because the primer was not specific enough to distinguish measles RNA from human DNA.

There is an obvious problem with applying the D’Souza findings to the Uhlmann study and by extension, to the reliability of the O’Leary lab in relation to Michelle Cedillo. De Souza found measles in nearly all their samples. If O’Leary was similarly unreliable why didn’t they find measles in their non-autistic control group?

Three expert witnesses for the respondent: Drs. Bustin, Rima and McDonald- offered a possible explanation. All agreed that procedures at O’Leary’s lab were error prone and liable to contamination and false positives. Dr. Bustin and Dr Rima also found evidence of alterations to laboratory records which, according to the testimony of Dr Bustin, were certainly improper and perhaps fraudulent. There were other problems.

For example, sometimes the guidelines of the testing equipment manufacturers were not followed, which could erroneously make negative results appear to be positive results and disregard for accepted procedures that seemed calculated to deliberately generate false findings of measles virus in some cases.

This led Special Master Hastings to note that

Dr. Bustin’s testimony suggested the possibility that the Unigenetics personnel might have been deliberately using incorrect settings on their testing machine, in order to generate “positive” results that might support the MMR/autism causation theory. (Tr. 2009-11A.)

Dr McDonald stopped short of alleging deliberate fraud but concluded that

I have had the opportunity to examine the majority of those so-called positive in cell-PCR slides and discovered worrying discrepancies between the methodologies reported in the Uhlmann et al paper and what was actually done in the lab. The technique is completely unreliable with an unacceptably high experimental failure rate, many of the control sections were destroyed during the processing, the wrong technical controls were being used, and the claims of positivity or negativity were subjective and spurious. In cell-PCR does not detect measles virus in the lymphoid tissue of children with autism.

In the face of detailed and damning testimony like this the assertions of the petitioners’ witnesses that they were satisfied with the reliability of the testing carried out at the O’Leary lab were not persuasive.

Shooting the messenger

Although the petitioners had failed to provide any evidence for persistent measles virus they still defended the hypothesis by criticizing those studies like D’Souza that called the hypothesis into question. This has been a common feature of both the Omnibus proceedings and the wider debate about vaccines and autism. The vaccine blamers seem to operate on the totally unscientific basis that once they have presented a plausible hypothesis it is up to their critics to provide proof positive that the hypothesis is false and any perceived flaws in these critics’ arguments are assumed to strengthen the hypothesis. I am sure there is a name for this sort of logical fallacy. The only thing that can strengthen a hypothesis is data.

Nevertheless, Dr Hepner for the petitioners

stated that the failure of the Afzal and D’Souza studies to replicate the findings of the Uhlmann study was probably due to two factors. First, in those Afzal and D’Souza studies, the authors tested certain blood cells of the children, not intestinal tissue as did the authors of the Uhlmann article. Second, the Afzal and D’Souza studies tested autistic children, but not autistic children with gastrointestinal dysfunction as was the case with the Uhlmann testing. (Ex. 63, pp. 4-5; Tr. 629A-31A.)

I am not a scientist. But it seems self evident to me that if measles virus is persisting in the gut of autistic children and infecting their brains it would be remarkable if it was not also found in their blood. And D’Souza did carry out a further study on intestinal material with similar results. Furthermore the architect of the MMR/autism hypothesis, Andrew Wakefield, took part in a study that used PCR to detect measles RNA in the blood of autistic children.

Kawashima H, Mori T, Kashiwagi Y, et al. Detection and sequencing of measles virus from peripheral mononuclear cells from patients with inflammatory bowel disease and autism. Dig Dis Sci 2000;45:723–9.

The second criticism, that other researchers have not tested autistic children with GI dysfunction and this explains their failure to detect measles in the children, misses the point that D’Souza did find measles when he used the same techniques as the O’Leary team but these were false positives. Where is the data to support the petitioners’ case? It is not enough to query the studies that contradict your hypothesis. You need some positive evidence as well. The best that Dr Hepner could do, apart from defending the Uhlmann study, was to point to research of her own that has still not been published so we only have her word for it.

Finally, Dr. Hepner pointed to a study that is currently in progress, conducted by herself and several others, to which I will refer as the “Walker study.” She stated that the “preliminary data” from that study “present another step in support” of the proposition that the measles virus persists in the intestinal tissue of autistic children. (Ex. 63, p. 5; Tr. 634A-35A.)

Absence of Evidence

The petitioners not only failed to provide any reliable evidence for persistent measles infection. They also neglected to provide any evidence that the measles they thought they had detected was vaccine strain measles. This surprising omission drew this comment from Special Master Hastings.

The petitioners in this case, of course, need to demonstrate not only that Michelle Cedillo and other autistic children have persisting measles virus in their bodies, but that such persisting measles virus is vaccine-strain measles virus, i.e., derived from an MMR vaccination rather than from the natural, “wild” form of measles virus. The Uhlmann article, however, does not even purport to show that the measles virus, which was claimed to have been found in the children’s biopsies, was vaccine-strain measles virus. Similarly, the specific Unigenetics test of Michelle Cedillo’s tissue purported to identify only measles virus, not vaccine-strain measles virus.

The fact that the petitioners were unable to provide any evidence that vaccine strain measles virus had persisted in Michelle Cedillo or any other child for that matter left them trying to argue that the hypothetical possibility that MMR could cause autism was more probable than not. (The fifty percent plus a feather argument)

Hypothesis versus data

Case reports often suggest a hypothesis that has the power to explain novel situations. Autism emerged from case studies published contemporaneously but independently by Kanner in the USA and Asperger in Austria. But many hypotheses are generated in science and only those that are supported by data from systematic investigations will prosper. The MMR/autism hypothesis has been around for at least ten years since Wakefield’s paper in the Lancet. Unfortunately for the petitioners, most of the data has piled up against the hypothesis, as was evident from the proceedings in the Vaccine Court.

Vaccines have not always been with us and many parts of the world still do not have adequate supplies. So the obvious question is, “In the absence of vaccines does wild strain measles virus cause autism?” The answer is no. Measles virus can persist in the body and it has been known to infect the brain, often with fatal consequences. But there is no evidence that it has ever caused autism.

Perhaps the vaccine strain, because it is weaker than the wild strain, could cause autism instead of killing you. It could enter the brain, cause an inflammatory reaction and the resulting brain damage could cause autism. Perhaps. But the argument is very weak. Inflammation is associated with some cases of autism. Measles can cause inflammation. But it is quite a stretch to speculate on that basis that vaccine strain measles infection causes an inflammation that leads to autism. Special Master Hastings actually described the petitioners’ theory as speculative and dismissed it because of expert testimony like this on page 89 of Cedillo.

• This “is not biologically plausible.” - Dr Griffin.
• It would require a “new biology.” - Dr Ward.
• It “does not follow any [known] biologic model of a measles infection of the brain” - Dr Wiznitzer.
• “We understand especially what measles virus may or may not do within the nervous system,” and that knowledge is incompatible with the theory that the persisting measles virus would cause autism. - Dr Rust.

Rectifying an anomaly

And that is it really. A biologically implausible theory with no factual evidence to support it was allowed to drag on for seven years. The costs must run into millions of dollars. The real cost is in the damage this case has done to confidence in vaccines.  Vaccine preventable diieases are making a comeback and measles is leading the way.  There is also the cost to the families who believed this theory and, in addition to the legal expense that many will have incurred, there are the medical costs of  the remedies sold to them by the same quack doctors who promoted the theory in the first place.

I am also struck by a curious anomaly. The petitioners’ case has always stressed that it is persistent vaccine strain measles virus that is causing autism. Because they thought they were detecting measles RNA in children many years after their vaccination they argued that it was the persistence that led to autism. This suggests a chronic, debilitating effect rather than an acute episode leading to immediate regression. Yet the petitioners argued for just such an acute episode within days of the vaccination in the case of Michelle Cedillo.

If that was the case there was no need to prove the persistence of measles virus. It did not need to persist in order to have the stated effect within the time frame as described by Dr Kinsbourne. Readers may recall that for years prior to joining the Omnibus Proceedings, the Cedillo family and their principle expert witness, Dr Kinsbourne, believed that Michelle had suffered a table injury. That is, she had suffered a recognized injury as a result of MMR vaccination. It is quite feasible that such a claim would have been accepted and Michelle would have won a settlement.

I see no way to rectify this particular anomaly in Michelle’s favour. But I do hope that when they decide on costs, the special masters take into account the quality of legal work and the standard of the expert testimony offered and match the payments accordingly. My next post on the Omnibus will look at some of these so-called experts, notably Krigsman and Bradstreet, in more detail.

March 11th, 2009 Posted by Mike | MMR, autism Omnibus, science, vaccines | 6 comments

RFK, Autism and the Vaccine Court

The Kennedy name still resonates with liberals and democrats around the world. So when Robert Kennedy weighed in on the vaccine-autism controversy with his article Deadly Immunity a lot of people took notice. Unfortunately for RFK some of them actually took the trouble to read the Simpsonwood transcript on which he based his tale of conspiracies and cover-ups and discovered that he had systematically distorted it in order to make it seem that it said the exact opposite of what it really said.

On that occasion he was promoting the idea that the miniscule amounts of mercury that used to be found in early childhood vaccines could cause autism. He is back again with another article promoting the vaccine autism connection. This time he has the US Court of Federal Claims (aka the Vaccine Court) in his sights.

RFK operates from a simple set of premises.

• The Vaccine Court exists to protect the vaccine program and vaccine makers.
  
• It employs a draconian armory of weapons deployable against plaintiffs intent on proving the causal connection between vaccines and autism.
• The standard of proof in the OAP is impossibly high.
• The CDC has actively, openly and systematically suppressed and defunded epidemiological studies that might establish a causal link. So the special masters in the vaccine court have to find for the government because of insufficient evidence.
  
• It’s Tobacco all over again only now it is the government and big pharma instead of the tobacco companies who are the villains. He even calls the studies that contradict his meanderings “tobacco science.”
  

Every one of his premises is wrong.  If it was just the case that  RFK does not know what he is talking about it would be a simple matter to educate him. But, just as with Simpsonwood, he has studied the evidence and twisted it to match his agenda.

RFK on the CDC

Let us start with his most outrageous accusations against the CDC, that they are actively suppressing research and funding junk science to protect the vaccine programme. He offers no evidence at all for this claim. He does not cite a single study that has been thwarted or quote from a single disgruntled whistleblower. The CDC funding comes from the federal budget and is subject to scrutiny and oversight by the Appropriations Committee. This year they are gently chided for spending so much time on autism research and reminded that cerebral palsy is in danger of being neglected.

The Committee is pleased with CDC’s progress in autism and developmental disabilities surveillance and is encouraged to learn of the launch of the largest ever epidemiologic study of potential causes of autism spectrum disorders. The Committee encourages CDC to build upon these successes and to also focus on the development of surveillance and research activities focused on cerebral palsy, another priority public health concern. (Page 110)

This will not please RFK. He wants vaccine studies not epidemiology. But that is being taken care of. The Appropriations Committee again.

ITEM
Autism and vaccines — The Committee continues to be aware of concerns about reports of a possible association between the measles component of the measles-mumps-rubella vaccine and a subset of autism termed autistic entercolitis. There have been presentations at medical meetings by researchers presenting data showing the presence of measles RNA in inflamed intestines of children with autism. The Committee continues its interest in this issue and encourages the interagency coordinating committee to continue to give serious attention to these reports. The Committee is aware that research is underway, supported by NIH, and encourages NIH to expedite this research. (Page 168-169)

RFK objects to epidemiological studies because they are supposed to be too crude to pick up the tiny numbers of vaccine susceptible figures. What we need instead are case control studies. Never mind that we are also supposed to believe that there is a vaccine induced autism epidemic affecting tens of thouands of children. Never mind that it was epidemiological studies that nailed tobacco as a cause of cancer and later nailed passive smoking while the tobacco industry relied on case control studies and dubious lab tests. So much for “tobacco science.”

Never mind. There was a case control study done recently. Two of the researchers had been witnesses for the families in the MMR litigation in the USA UK. The lead researcher, Mady Hornig had authored a study on mercury that was used by the petitioners in the Autism Omnibus. Another member of the research team Ian Lipkin explained how “the autism/parent advocacy community” had been involved in the design of the study to “ensure that all issues were being addressed.” The study was condemned by the autism/parent advocacy community when the results turned out to be

“inconsistent with a causal role for MMR vaccine as a trigger or exacerbator of either GI difficulties or autism [...] The work reported here eliminates the remaining support for the hypothesis that autism with GI complaints is related to MMR vaccine exposure. We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism.”

Of course the fact that some of the funding and participants came from the CDC and the NIH was enough to invalidate the study in the eyes of true believers who judge research by its results, regardless of the merits of its methodology.

Vaccine Court

The same holds true of RFK’s opinion of the Vaccine Court. When Special Master Abell finds in favour of Bailey Banks it is “a remarkably clear and eloquent decision.” When three special masters find against the  test cases in the Autism Omnibus they are guilty of a “sweeping ruling.” Later he berates the special masters for placing undue reliance on medical records which are (allegedly) “often inaccurate.” But Bailey Banks won his case because in his“remarkably clear and eloquent decision.” Special Master Abell repeatedly cited Bailey’s medical records as corroborating his claim. RFK is not above citing medical records in evidence. Here for example.

Medical records associated with these proceedings clearly tell the tale. In perhaps hundreds of these cases, the children have all the classic symptoms of regressive autism;

Medical records, like case control studies it seems, are only inaccurate when they fail to confirm your prejudices. Unlike RFK who is consistently inaccurate.

• RFK: Although the vaccine court is mandated to fairly serve the victims of vaccine injuries, their primary purpose and raison d’etre is to protect the vaccine program and vaccine makers.
• FACT: The VICP was established to ensure an adequate supply of vaccines, stabilize vaccine costs, and establish and maintain an accessible and efficient forum for individuals found to be injured by certain vaccines. The VICP is a no-fault alternative to the traditional tort system for resolving vaccine injury claims that provides compensation to people found to be injured by certain vaccines. The U. S. Court of Federal Claims decides who will be paid.
• RFK: Damages are capped; awards for pain and suffering are strictly limited and punitive damages banned altogether.
  
• FACT: Awards to the estate in a vaccine-related death are limited to $250,000 plus attorney’s fees and costs. Awards to individuals with an injury judged to be vaccine-related have averaged $1,022,699. There is no limitation on the amount of an award in a vaccine-related injury. However, the law does contain certain restrictions. Eg a $250,000 cap on pain and suffering. And how can you have punitive damages in a no fault compensation scheme?
  
• RFK Plaintiffs, in contrast, must fund the up front costs for experts on their own.
• FACT: If certain minimal requirements are met, the VICP will pay your lawyer’s fees and other legal costs related to your claim, whether or not you are paid for a vaccine injury or death. The VICP will not pay the fees of petitioners representing themselves, but will pay their legal costs, whether or not the claim is paid as long as certain minimal requirements are met. In effect, lawyers meet the up front costs of expert witnesses and bill the court at the end of the hearing.
• RFK: Worst of all — plaintiffs have no right to discovery either against the pharmaceutical industry or the government.
• FACT:
  (1) Scope in General. Unless otherwise limited by court order, the scope of discovery is as follows: Parties may obtain discovery regarding any nonprivileged matter that is relevant to any party’s claim or defense—including the existence, description, nature, custody, condition, and location of any documents or other tangible things and the identity and location of persons who know of any discoverable matter. For good cause, the court may order discovery of any matter relevant to the subject matter involved in the action. Relevant information need not be admissible at the trial if the discovery appears reasonably calculated to lead to the discovery of admissible evidence. All discovery is subject to the limitations imposed by RCFC 26(b)(2)(C).

Vaccine Safety Database

RFK complains that the government is restricting access to the Vaccine safety Database to the detriment of plaintiffs. And so it should. The VSD contains over 7 million medical records. They are held by major private care organizations who have a duty to protect patient confidentiality. The VSD is not and never should be a happy hunting ground for vaccine injury compensation lawyers. Bona fide researchers should have access to the VSD but the antics of a pair of “researchers” who make their living as expert witnesses in vaccine cases has not helped anybody in this respect. As Casewatch reports.

In summary, during the first visit the researchers conducted unapproved analysis on their datasets and on the second visit attempted to carry out unapproved analyses but did not complete this attempt. This analysis, had it been completed, could have increased the risk of a confidentiality breach. Before leaving, the researchers renamed files for removal which were not allowed to be removed. Had it gone undetected, this would have constituted a breach of the rules about confidentiality.

MMR or DTP?

RFK states that

since 1988, the vaccine court has awarded money judgments, often in the millions of dollars, to thirteen hundred and twenty two families whose children suffered brain damage from vaccines. In many of these cases, the government paid out awards following a judicial finding that vaccine injury lead to the child’s autism spectrum disorder. In each of these cases, the plaintiffs’ attorneys made the same tactical decision made by Bailey Bank’s lawyer, electing to opt out of the highly charged Omnibus Autism Proceedings and argue their autism cases in the regular vaccine court. In many other successful cases, attorneys elected to steer clear of the hot button autism issue altogether and seek recovery instead for the underlying brain damage that caused their client’s autism.

The Omnibus was not established until 2002. So I doubt that many of these families opted out of its proceedings. As far as I know there are very few judicial findings that a vaccine injury led to an autism spectrum disorder. Kathleen Seidel found 9 cases which she reported on her Neurodiversity blog. If one looks at the statistics for the VICP it is apparent that there have been two spikes in petitions. The first occurred, reasonably enough in the first three years of the vaccine court and was overwhelmingly concerned with the old style DTP vaccine that was associated with encephalopathy and seizures. According to David Kirby the government sent CBS an email about these 1322 brain damaged children.

Slide 75

Email from HHS to CBS
Here are the numbers of compensable cases for encephalitis / encephalopathy and seizures in our database from October 1, 1988 to March 4, 2008.
Encephalitis/Encephalopathy    611
Seizure Disorders                     711
Total                                     1,322
There’s not much difference in the medical history and outcomes for children that were compensated for “encephalopathy” versus “seizures.”
Those compensated for encephalopathy often had seizures as part of their clinical picture, and vice versa.

How many of these were petitions for vaccine injury by the old DTP that had nothing to do with autism? It does not matter to RFK because he is trying to make the case that hundreds of autism claims have been settled that never mentioned the A word because to do so would bring down the wrath of the special masters upon you. He cites the unseen medical records as “evidence,” claiming that even though autism is not mentioned these records clearly show the pattern of regressive autism.

In fact autism has never been a barrier to claiming a vaccine injury. Bailey Banks attorney is quoted by RFK as saying that he decided not to go with the Omnibus because that would have made it harder to win. That is hardly surprising as in Bailey’s case a single incident of acute disseminated encephalomyelitis (ADEM) was alleged to have caused his problems. The omnibus was arguing for a persistent measles virus in the brain and never mentioned ADEM in any of the three test cases.

JFK’s other source is vaccine injury lawyer Robert Krakow.  But somehow, despite quoting him extensively, RFK never gets round to informing us that Krakow is himself the parent of an autistic child. He was intimately connected with the Omnibus for many years. In fact he was to be the replacement test case for Hannah Poling until he decided that the evidence for mercury causing autism was so weak that he jumped ship and is now pursuing his own claim for a vaccine induced mitochondrial disorder.

As to the alleged hostility of the special masters to autism claims, I am grateful to Anne who commented (no 5) on the Neurodiversity blog cited above as follows;

July 3, 2002 Autism General Order #1. There Chief Special Master Golkiewicz recounted how Cliff Shoemaker and other counsel for petitioners wanted to put the autism claims on hold pending scientific developments that they could use as proof of causation. Although the Special Master agreed to place the cases on hold, he forcefully reminded petitioners and their counsel that “[a]utism cases involving Table Injuries have been compensated under the Program,” and that cases like that should not be held up in the omnibus proceeding:

“One important caveat, however, is drawn to the attention of all petitioners and their counsel! There may be cases involving autistic-like disorders which manifested following an injury defined in the Vaccine Injury Table. That is, a vaccine may have suffered an episode involving a severe acute encephalopathy within 72 hours after a pertussis vaccination (DTP or DTaP), or 5 to 15 days after an MMR vaccination. If so, such an acute encephalopathy and any residual effects thereof would be presumed to be vaccine-caused pursuant to the Vaccine Injury Table. See 42 C.F.R. § 100.3(a) (10-1-97 version of CFR).5 However, this would apply only to cases falling within the current Vaccine Injury Table’s definition of “acute encephalopathy,” in which the vaccinee suffered a sudden, dramatic, and severe change in level of consciousness lasting at least 24 hours. 42 C.F.R. § 100.3(b)(2)(i)(A) and (D). The incident must have been “sufficiently severe so as to require hospitalization,” though actual hospitalization at the time need not have occurred. 42 C.F.R. § 100.3(b)(2)(i). Autism cases involving Table Injuries have been compensated under the Program. If in a particular case there exist medical records demonstrating that such a qualifying “acute encephalopathy” occurred within the appropriate time frame, petitioner or counsel should bring that to the assigned special master’s attention so that, if appropriate, the case can be processed without delay as a Table Injury.

Finally, petitioners should note that even after electing to have their case stayed pending the conclusion of the Omnibus Autism Proceeding, such election is not irrevocable. That is, if at a future time a petitioner determines that his own case should be separated from the Omnibus Autism Proceeding and processed separately, with the petitioner introducing case-specific proof of causation, such petitioner may request that a special master analyze his case. A special master will be assigned and the case will be processed as expeditiously as possible.”

(7/3/02 Autism General Order #1, pp. 6-8.)

So the special masters were inviting plaintiffs to submit claims for table injuries and bypass the Omnibus because they did not want children to suffer unnecessary delay in obtaining compensation, not because they were trying to cover up the alleged vaccine autism connection. Perhaps they remembered the previous spike in vaccine claimants when according to one attorney who spoke to Arthur Allen over a third of all claims had nothing to do with DTP. The government set the evidence barrier low and it was exploited. Predictably the government reacted and removed most of the injuries from DTP from the list that receieved automatic awards - the list of table injuries. And just to show how unworthy is RFK’s appraisal of the special masters as tools of the government here is another quote from Arthur Allen’s book. This time it is the senior special master, Gary Golkiewicz, commenting on the removal of DTP injuries from the table who told Arthur that the government had

“altered the game so that it is clearly in their favor. This group has a vested interest in vaccines being good. It does not take a mental giant to see the unfairness in this.”

So much for special masters as government stooges. I have had enough of RFK. I empathize with the commenter on his article who wrote that he never expected this to be the last piece he ever read by Robert Kennedy. I hope it is the last piece I ever have to read as well.

March 1st, 2009 Posted by Mike | MMR, autism Omnibus, journalism, vaccines | 7 comments