A study comparing vaccinated and unvaccinated kids is coming…and SafeMinds is concerned

10 Jul

If a discussion of autism goes on long enough in the online parent community, the question of vaccines will almost certainly come up. (I’ll note that in real life it rarely, almost never, comes up). If the vaccine topic takes over the discussion, one is very likely to hear the call for a “vaxed/unvaxed” study: a comparison of health outcomes for kids who were vaccinated compared to kids who were not vaccinated.

There are at least three such studies in the works. Two are being funded by groups antagonistic to vaccines. The self-named “National Vaccine Information Center” is funding a project at George Mason University. Said study is, I believe, run by someone from NVIC. Generation Rescue is funding a project at Jackson State University, “Researching into the causes of autism”. In previous years, Generation Rescue was funding Jackson State for a project “vaccination status and health outcomes among homeschool children in the United States”, which is likely the same project just with a different name. Perhaps that’s the same study that the founder of “Focus Autism” is complaining about here. Either way, there are two, maybe more, vaccinated/unvaccinated studies that have been underway for a few years, funded by groups generally antagonistic towards vaccines.

As an aside–in online discussions, the people calling for a vaxed/unvaxed study are connected to Generation Rescue and NVIC. And yet they act like no one is doing such a study.

Back to the topic at hand: there is another vaccinated/unvaccinated study in the works. A large study. In discussions at an IACC meeting this year, Tom Insel responded to a statement about a vaccinated vs. unvaccinated study:

Dr. Insel: So I might add, we have just done that study looking at, in this case, tens of thousands of children in a large health care system — younger siblings, many of whom did not vaccinated. So we could, whether you like it or not, compare what the risks are, both the risk for autism and the risks for medical consequences for not being vaccinated versus being vaccinated in children who have presumably some genetic risk because they’re young sibs.

And those data are submitted for peer review. We should — maybe by July we’d be able to have that presented here. So I’ll be happy to, since we’ve funded that through, be happy to ask the authors to come and talk to us about the results.

That statement was in April. We just had the July IACC meeting but the results were not presented. The study is in the works, though. At the time Dr. Insel made that statement it struck me that this study was likely a part of a project by the Lewin Group. The Lewin Group presented at the IACC in early 2013. That project has not yet been published, but the results presented last year were very interesting, so I’ll take some time to go through those results here. Keep in mind that it’s possible the upcoming vaccinated/unvaccinated study is not by the Lewin Group.

The Lewin Group study population was large and included a large cohort of siblings of ASD kids:

lewin1

When I read or hear “comorbid conditions” discussed by advocacy groups or parents, they are almost always those conditions which those groups feel are part of their “vaccines cause autism” picture. Gastrointestinal complaints–falsely linked by Andrew Wakefield to the MMR vaccine and autism. Mitochondrial/metabolic disorders, brought to prominence by a famous vaccine court case.

Yes, in this study metabolic dysfunction and gastronintestinal/nutritional conditions are about 4.5 times more common in ASD kids. About 20% of kids are in the gastronintestinal/nutritional conditions group (I wonder how that breaks down into GI and nutritional as separate groups). About 5% have metabolic conditions.

But what if I were to tell you that these are not the most common comorbid conditions in ASD children (and ASD adults are yet another story)? Not by a long shot.

lewin2

About 70% of ASD kids have neurological disorders. About 70% have mental health conditions.

70%. 24 times higher than the general population for each condition.

You just don’t hear that from groups promoting vaccine causation. Groups like SafeMinds. Which brings us back to the vaccinated/unvaccinated study SafeMinds is concerned about. SafeMinds is preparing its readers for the vaccinated/unvaccinated study. Although they’ve been calling for this study for a long time, a fact they remind us of this fact in their article: The NIH is slated to release the results of a study on autism in vaccinated, partially vaccinated, and non-vaccinated children. Here’s what you need to know BEFORE it comes out.

SafeMinds begins their article comes with what I consider a rather ironic graphic:

SafeMindsBlowsAnIronyMeter

Why is this ironic? SafeMinds relies upon poorly done research to support their arguments about vaccines, mercury and autism. For example, their non-peer reviewed Autism: A Novel Form of Mercury Poisoning is one of the papers that first made me question the purported vaccine/autism link. It was never very good and really should be discarded. As another example, if you go the SafeMinds web page
Correlation Between Increases in Autism Prevalence and Introduction of New Vaccines you will find this graph:

california-autism-prevalence

If you think that graph looks old, you’d be correct. It’s at least 10, if not 15 years old. It takes California Department of Developmental Services (CDDS) administrative data, pretends it’s actually autism prevalence, and graphs it against the mercury exposure from infant vaccines during the 1990’s and leads the reader to the idea that mercury exposure and autism are correlated and also related. But they aren’t correlated. That’s what happens when you use a 15 year old graph. California removed thimerosal from infant vaccines, even the flu shots, and also for vaccines for pregnant women. And what happened to the autism rate? It kept going up. Schechter and Grether published this in 2008 in Continuing increases in autism reported to California’s developmental services system: mercury in retrograde. In 2013, I showed that the increase was still going on. But SafeMinds is acting like the last decade didn’t happen. They tell us:

Autism prevalence increased rapidly in the late 1980s. The epidemic increased simultaneously in states across the United States, indicating that U.S. children were exposed to toxins in a consistent manner across the entire country. Due to the high adherence amongst the states to the CDC-recommended vaccination schedule, vaccines typically introduce a new exposure to children simultaneously throughout the country.

For people who actually looked at the CDDS data, we know the idea that autism was rising in the same way in various locations wasn’t true. The whole basis for a universal exposure causing the rise in identified autism was false. It’s one of those facts that made me question the vaccine hypothesis long ago. CDDS data even in 2000 showed autism rates varied wildly across the state of California and the increase was not the same from region to region within the state. Special Ed data (which has major limitations but is likely the data SafeMinds was using to make the above statement) showed large variation from state to state in the number of people getting services under the autism label. There is not and never was data to support the assertion SafeMinds makes above that the rates of autism increased simultaneously across the US.

All this is my long-winded way of saying, I find it more than ironic that SafeMinds wants to warn me about flawed research leading to bad conclusions.

So, let’s ask ourselves: why would SafeMinds be concerned enough about this new vaccinated/unvaccinated study? Well, siblings of autistic kids are (a) more likely to be unvaccinated and (b) more likely to be autistic, like 20 times more likely to be autistic (here and here)

The Lewin group reported that younger siblings were less likely to be vaccinated:

lewin3

In addtion, an unpublished study from 2011 compared vaccination status among ASD kids, their siblings and non-relatives. The authors found:

Instead, because siblings of children with autism were less likely to be vaccinated according to the recommended schedule, both correlations and multiple regressions revealed a significant relationship between higher rates of vaccination and non-ASD behavioral outcomes.

Or, to put it simply, if you look at younger siblings, they get fewer vaccines than the general public and have a higher rate of autism. If correlation is causation, this would mean that vaccines prevent autism. Which, in at least one case, is true. Correlation is not causation, though. The new study will likely find that delaying or forgoing vaccines does not reduce autism risk. And that, in my view, would concern SafeMinds. Enough that they want people prepared in advance for what to them will be “bad” news.


By Matt Carey

I am what I am

3 Jul

I can’t hear this song without thinking about my kid. To me, this song represents the future I hope to make. A world where my kid can be accepted.

If you don’t know the song, it’s from the show La Cage aux Folles. It’s based on a non-musical French film by the same name. You may be more familiar with the more recent American adaptation, The Birdcage.

“I am what I am” is sung by the character Albin. In the story, La Cage aux Folles is a drag club and Albin is the star performer. After a very emotional event challenging the value of his identity, Albin sings this song as a statement that he accepts himself for who he is.

There tends to be a lot of confusion about pride movements. Quite often those who oppose specific pride movements claim that those proclaiming their pride are claiming superiority. That’s not the case at all most of the time and certainly isn’t in this song or in how I see it applying to my child. To me this song is about equality. One can have extraordinary needs and be an equal. One can accept support and be an equal.

I’ve hesitated posting this for a long time. I usually stay away from personal topics. Also, for the literal minded this song may not seem to apply to people who are nonverbal or minimally verbal. The lyrics reference being able to speak, to “say out loud” and the like. I’ll put it simply: if you feel that this song doesn’t apply if one can not physically speak you’ve missed the point. I say that not to tell people they are wrong, but to, well, ask them to see things from a different angle.

It doesn’t get better than George Hearn:

Here are the lyrics.

I am what I am
I am my own special creation
So come take a look
Give me the hook or the ovation

It’s my world that I want to have a little pride in
My world and it’s not a place I have to hide in
Life’s not worth a damn
Till you can say, hey world, I am what I am

I am what I am
I don’t want praise, I don’t want pity
I bang my own drum
Some think it’s noise, I think it’s pretty

And so what if I love each feather and each bangle
Why not try to see things from a different angle
Your life is a sham
Till you can shout out loud, I am what I am

I am what I am
And what I am needs no excuses
I deal my own deck
Sometimes the ace, sometimes the deuces

There’s one life and there’s no return and no deposit
One life so it’s time to open up your closet
Life’s not worth a damn
Till you can say, hey world, I am what I am


By Matt Carey

Comment on “Prenatal and neonatal peripheral blood mercury levels and autism spectrum disorders”

3 Jul

About a decade ago (even longer) there was a question posed as to whether thimerosal (a mercury containing preservative) in vaccines could increase the risk of autism. Many studies have been performed and the answer is no (for example, here).

Even though the question has been approached from multiple angles, research continues. A study out this week takes a look at blood mercury levels in the mother and newborn baby to see if they are correlated with later autism diagnoses in the baby.

California archives blood samples from pregnant mothers and blood spots (cards with a dried spot of blood) from newborns. A team looked at these samples to explore the question: are blood mercury levels in pregnant mothers or newborns correlated with autism.

Short answer: no.

Add this to a MIND Institute study from a few years ago , (Blood mercury concentrations in CHARGE Study children with and without autism) which showed no differences in blood mercury levels between ASD and non ASD preschool children when controlled for diet. And this study from Jamaica again showing no differences. So, while the authors in the recent study suggest a larger study would be valuable, I question whether resources would be wisely spent in that way.

The abstract is below of the new study is below:

Prenatal and neonatal peripheral blood mercury levels and autism spectrum disorders.

BACKGROUND:

Prenatal and early-life exposures to mercury have been hypothesized to be associated with increased risk of autism spectrum disorders (ASDs).

OBJECTIVES:

This study investigated the association between ASDs and levels of total mercury measured in maternal serum from mid-pregnancy and infant blood shortly after birth.

METHODS:

The study sample was drawn from the Early Markers for Autism (EMA) Study. Three groups of children who were born in Orange County, CA in 2000-2001 were identified: children with ASD (n=84), children with intellectual disability or developmental delay (DD) (n=49), and general population controls (GP) (n=159). Maternal serum specimens and newborn bloodspots were retrieved from the California Department of Public Health prenatal and newborn screening specimen archives. Blood mercury levels were measured in maternal serum samples using mass spectrometer and in infant bloodspots with a 213nm laser.

RESULTS:

Maternal serum and infant blood mercury levels were significantly correlated among all study groups (all correlations >0.38, p<0.01). Adjusted logistic regression models showed no significant associations between ASD and log transformed mercury levels in maternal serum samples (ASD vs. GP: OR [95% CI]=0.96 [0.49-1.90]; ASD vs. DD: OR [95% CI]=2.56 [0.89-7.39]). Results for mercury levels in newborn blood samples were similar (ASD vs. GP: OR [95% CI]=1.18 [0.71-1.95]; ASD vs. DD: OR [95% CI]=1.96 [0.75-5.14]).

CONCLUSIONS:

Results indicate that levels of total mercury in serum collected from mothers during mid-pregnancy and from newborn bloodspots were not significantly associated with risk of ASD, though additional studies with greater sample size and covariate measurement are needed.

Copyright © 2014 Elsevier Inc. All rights reserved.


By Matt Carey

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

2 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will have two new members when it meets next week. The press release is below. The new members are Wendy Chung from Simons Foundation and Robert Ring from Autism Speaks. The Simons Foundation is the largest non-governmental funder of autism research and previously had a member on the IACC (Dennis Choi). My understanding is that Mr. Choi took a position working with a foreign government and that conflict required him to resign the IACC. Geri Dawson is still on the IACC and started this session working for Autism Speaks. Ms. Dawson has since left Autism Speaks.

For Immediate Release
July 2, 2014

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.


By Matt Carey

The vaccine-autism notion as a liability

1 Jul

It wasn’t that long ago that my kid was diagnosed and I started on the search for information about autism. At that time the idea of vaccine causation was dominating the discussion, at least in the online world where autism parents were participating. Even mainstream news outlets seemed to think that getting a “balance” viewpoint from a parent espousing vaccine causation was necessary. Over the past near-decade the discussion landscape has changed a great deal. Sure, a small group of parent-activists (and non-parents using autism as a tool to attack vaccines) still present a vocal minority telling us about how vaccines cause autism. But for the most part the discussion has moved on from vaccines.

To use a simple example: a few years ago Jenny used the idea of vaccines causing autism as a springboard back into the public’s eye. These days, she’s quiet and even trying to distance herself from her previous statements.

As a more detailed example, Consider SafeMinds:

In 2006, SafeMinds endorsed the Combating Autism Act. In their endorsement at that time, SafeMinds mentions vaccines 25 times.

In 2011, the Combating Autism Act was up for reauthorization. >A coalition of vaccine focused autism parent organizations including SafeMinds was formed. They included in their statement “The membership includes advocates of the vaccine theory”. Right out there and public.

This year, 2014, we see a different coalition formed that includes SafeMinds: the Autism Policy Reform Coalition. Many of the groups in the new coalition were part of the 2011 coalition, and all of the APRC’s member organizations have a strong focus on vaccines as causing autism. But here’s the difference: there appears to be no mention of the word “vaccine” on the >APRC’s website. (here’s my Google search).

SafeMinds is still very clear on their position at their own website. A recent article make that clear: Dear Parents, you are being deceived about vaccines and autism.

There’s no mention of the word “vaccine” on the >SafeMinds announcement of the new Coalition.

Consider Generation Rescue. Their original website was all about how mercury in vaccines was the cause of autism. Autism was a “misdiagnosis” for mercury poisoning. That was 2005. A few years later, Jenny McCarthy became a spokesperson for, then president of Generation Rescue. The GR website proudly proclaimed, “Jenny McCarthy and Jim Carrey’s Autism Organization” and was, again, all about vaccines. Jenny McCarthy led a few hundred people in a march in Washington DC solely focused on vaccines: Green Our Vaccines Rally. She went on talk shows telling the public that we need to get the “sh*t” out of vaccines. Today? The Generation Rescue website hasn’t completely lost the discussion of vaccines, but has toned down a great deal. She wrote an op-ed for the Chicago Sun Times Jenny McCarthy: The gray area on vaccines.

As an aside–I have a hard time being lectured by Jenny McCarthy about “critical thinking” as she tries to do in her Sun-Times op-ed.

Recently the National Autism Association (another member of the coalition opposing the autism research reauthorization) ran into trouble in a fundraiser. When their views on vaccines and autism were made very, very public, Chili’s cancelled a fundraiser with them. The NAA responded:

Though NAA has changed our mission and efforts in recent years to focus on autism safety, namely wandering prevention, controversial views about vaccines remained on our website. Because of guest feedback about these views, Chili’s has opted to cancel tomorrow’s event. We respect their decision and ask everyone to please speak words of love and kindness.

The NAA felt that they needed to distance themselves from their older “controversial views”. At least that’s what they said. It’s worth noting that the NAA has not changed their website on those controversial views.

Three groups. All historically major players in promoting the failed autism/vaccine hypotheses. As a coalition, they avoid mention of the word. As separate entities, they still espouse the ideas to varying degrees. Some have mixed messages–for example telling us that they previously held “controversial” views while not changing those views.

Things have changed. The vaccine debate has shifted and largely dropped in prominence and acceptance. It’s now a liability. A political and public relations liability. Even the groups promoting vaccine-causation appear to understand this. I welcome this shift. Besides being wrong and diverting a great deal of attention into fruitless areas of research, the groups dominating the discussion with vaccine causation caused a lot of harm over the years. I just wish they would truly change their views and admit their mistakes.


By Matt Carey

Andrew Wakefield and Lance Armstrong: two unethical people exposed by the Sunday Times

30 Jun

The Sunday Times has a series of films (Unquiet Films, www.foreverunquiet.co.uk) has a series of short films about the impact of The Times has had over the years.

Newspapers are all about stories – but sometimes the best stories are the ones we don’t tell.

Let’s not forget that news is often something that someone, somewhere, doesn’t want you to know. The real-life tales of how world-changing exclusives – whether from foreign reporters under fire, or determined hacks banging against stone-walling bureaucracy – are brought out into the open can be just as extraordinary as the articles that end up in the newspaper. Sometimes the story behind our amazing photo-journalism, campaign to change the law on adoption, to make cities safe for cycling, to reveal the corruption at the heart of FIFA, or the lies of a champion like Lance Armstrong are as exciting as a thriller, as tense as an episode of House of Cards.

We decided it was time to showcase just what the best journalists do… the real lives, real struggles, real bravery behind the newspaper stories that change the course of history. It’s all very well to boast that The Times and the Sunday Times strive to speak truth to power, without fear or favour and to report the truth, whatever the cost. But too often exactly what that takes – the death threats to reporters, the legal battles, the toughness and integrity it takes to get the article on the page – gets lost in the telling.

So here, in a series of extraordinary and independently made short films are some of the amazing, true-life stories behind the stories – we hope you find them as moving and inspiring as we do.

As an example of the “best journalists do”, they have a segment entitled “question everything“. It focuses on Brian Deer (whose work exposed the unethical actions of Andrew Wakefield, later found proved by the GMC) and David Walsh (who pursued and uncovered the Lance Armstrong doping scandal).

From BAFTA-winning filmmaker Will Clark: We now live in a world where more often than not, only the surface facts of a story are reported. Real investigative journalism seems to be a dying art and I feel this is something we should all be deeply concerned about. I wanted to create a film that focused on two Sunday Times journalists whose pursuit for the truth turned into an obsession. From Lance Armstrong’s doping revelations to Andrew Wakefield’s fraudulent MMR claims, both were lengthy investigations that were published at risk by the newspaper. Both investigations also managed to reveal large scandals that would most likely have remained hidden were it not for the perseverance and tenacity of the journalists covering the stories. I’m sure every reporter has secretly wished for his or her very own All The President’s Men moment. This is the tale of two journalists who got their wish.

Here’s the video:


By Matt Carey

Same old Jenny

27 Jun

Jenny McCarthy is back in the news. It appears that The View is not renewing her contract. In fact, there seems to be quite a shakeup at The View with many people leaving.

Jenny McCarthy is responding to this news, discussing fellow View host Sherri Shephard as picked up by Fox News.

“If Sherri goes … I go too,” McCarthy tweeted Thursday from her verified account, adding “#sisters,” followed by another tweet: “My View will be changing too. As will with many hard working folks. Thanks to everyone at the show for your dedication and an amazing year.”

Interesting spin there–instead of being released, she’s framing it as Jenny McCarthy, ready to take a stand and quit her job for her “sister”. Right. One thing I’ve learned over the years watching Jenny McCarthy, she’s good at spinning things to make herself look good.

She’s been a bit of a chameleon when it comes to her opinions. When it comes to autism, she started out with a new-age type “indigo child” approach. Then she took on the “vaccines cause autism” thing, which really catapulted her back into the public eye. Then the vaccine thing became a liability and she got quiet, finally posting an op-ed distancing herself from her previous views*. And, now, we see that the “View” she’s had for the past year was, well, just for “The View”. New job, new View. Will that involve autism, vaccines or something new? We don’t know. We just know that leaving the show means she can change her views.

Same old Jenny.


By Matt Carey

*Jenny McCarthy in her op-ed:
“I’ve never told anyone to not vaccinate.”

I don’t know if that’s true or not. I know she fueled a movement away from vaccines. For example, she wrote on Oprah Winfrey’s website in 2007, “But if I had another child, I would not vaccinate.” Yep, she has technical truth. She didn’t say, “you don’t vaccinate”. She just put herself out there as a leader of a community and said, “I won’t vaccinate”.

You know what word you won’t find in her Op-Ed? Autism. She doesn’t even approach the question that made her famous and that put so much fear in parents. It’s a very politically crafted article, in my opinion.

Jenny McCarthy on Larry King Live:

We’re scared. I mean moms and pregnant women are coming up to me on the street going, I don’t know what to do. I don’t know what to do. And I don’t know what to tell them, because I am surely not going to tell anyone to vaccinate. But if I had another child, there’s no way in hell.

She won’t tell someone *not* to vaccinate, but she “surely” won’t tell some one to vaccinate.

And later on Larry King Live

KING: Isn’t the problem here, Jenny, that people sometimes listen with one ear are going to panic. And not vaccine at all?

MCCARTHY: Probably. But guess what? It’s not my fault. The reason why they’re not vaccinating is because the vaccines are not safe. Make a better product and then parents will vaccinate.

Right. She gives people incorrect information about the safety of vaccines, they get scared and don’t vaccinate, but it’s not her fault because she’s on record saying (but not acting) she’s pro vaccine.

Another time on Larry King Live

MCCARTHY: We get that they’re saving lives, but the increase is ridiculous, you guys. Look, it’s plain and simple. It’s bull (EXPLETIVE DELETED).

KARP: No, it’s not.

MCCARTHY: Too many shots too soon.

(CROSS TALK)

MCCARTHY: My son died in front of me due to a vaccine injury. And there are many — every week I get a picture of a dead child.

KING: You lost a son?

MCCARTHY: Evan died in front of me for two minutes, cardiac arrest. Every week, I get a picture sent to me of a child that died following a vaccination.

What are parents supposed to think when they hear her say that vaccines kill, and that there are “too many, too soon”? Seriously, if there are “too many” vaccines, are parents supposed to say, “Jenny McCarthy is pro-vaccine. I’ll vaccinate my kid!” Too many means some vaccines shouldn’t be given which means, don’t vaccinate with those vaccines.

But, Jenny McCarthy doesn’t want you to think that’s what she said.

UK families suing MMR litigators for pursuing “hopeless” claims

27 Jun

The saga of the U.K. MMR litigation continues. In this case a family is suing a law firm involved for mishandling the case. Per one story, one of the original MMR litigants (McCafferty) is now suing:

McCafferty, 23, from Falkirk, central Scotland, is seeking damages to “include compensation, distress, expense and inconvenience of engaging in hopeless litigation”.

I’m not sure how sound this case is, but here we have a family arguing that they suffered by being sucked into the MMR litigation. The effort and expense they put into the case was not only wasted, but the case was “hopeless” and, thus, the attorneys were at fault for dragging them through this.

The story at The Times is behind a paywall, but it starts:

MMR families sue their legal aid lawyers

Families who failed to win compensation cases driven by flawed research into the MMR vaccine are suing their lawyers for pursuing “hopeless” claims and enriching themselves on legal aid.

Matthew McCafferty, 23, who received the vaccine and three years later developed autism, is taking action against his former legal team over a claim that he says had no chance of succeeding, was issued out of time and raised false hopes

MMR vaccine: lawyers sued for pursuing claim based on link to autism
Man claims Hodge Jones & Allen was negligent in litigating a hopeless claim while profiting from part of £15m legal aid funding

A man is suing his former legal team for pursuing “hopeless claims” based on flawed research into the MMR vaccine, it has emerged.

Matthew McCafferty, who was diagnosed with autism three years after receiving the vaccine, is taking legal action over a legal claim that he says had no chance of succeeding, according to a report in the Times.

The law firm is Hodge Jones & Allen. In MMR and Autism: What Parents Need to Know, Michael Fitzpatrick discusses how Richard Barr, the attorney who worked closely with Andrew Wakefield, started at Dawbarns, moved to Hodge Jones & Allen and then moved on to Alexander Harris, “always taking his burgeoning portfolio of MMR cases with him.”


By Matt Carey

The inhumanity of shamanic healing

26 Jun

The inhumanity of shamanic healing

‘Laurens van der Post meets Crocodile Dundee’ – Michael Fitzpatrick on Rupert Isaacson and his Horse Boy Method, the latest miracle healing programme for autism.

Rupert Isaacson, The Horse Boy: A Father’s Miraculous Journey to Heal His Son, Penguin 2009.

Michel Orion Scott (director), Rupert Isaacson (producer), The Horse Boy, DVD, 2010.

Rupert Isaacson, The Long Ride Home: The Extraordinary Journey of Healing that Changed a Child’s Life, Penguin 2014.

It was a shock to sit in a fashionable North London bar with an audience watching – without evident protest – a film scene in which the mother of a boy with autism ritually cleanses her genital area with ‘holy vodkha’ on the instruction of a shaman in deepest Mongolia. It is even more shocking to watch as six-year-old Rowan is subjected to what a sympathetic journalist who accompanied the family on their trip to Mongolia describes as ‘what looks to an outsider like child abuse’ (Tim Rayment, ‘The quest for a miracle cure’, Sunday Times 9 September 2007). Rowan is ‘whipped by a shaman – an intermediary between the natural and spirit worlds – and force-fed milk, then held under a noisy drum.’ He undergoes a dramatic behavioural regression: ‘He loses his language and starts to babble. He screams uncontrollably at the sound of a cow, assaults a little Mongolian girl, and bites his father. Getting the distressed child to the ‘sacred waters’- the ‘brain spring’ – means wrestling him there.’ (The film shows only a discreetly-edited version of these events, focusing on the whipping received by Rowan’s parents, film-maker and author Rupert Isaacson and psychologist Kristin Neff, though there is a more detailed account in Isaacson’s books).

When, in the Q&A following the film, I ventured to agree with Tim Rayment’s assessment that this did indeed ‘look like child abuse’, Isaacson responded angrily. He claimed that as a father he had merely followed his son’s lead – and urged other parents of children with autism that they should do the same. But – and this is one of several evident contradictions in Isaacson’s approach – it is clear that, though his son may have shown a spontaneous interest in horses, the initiative to subject Rowan to shamanic healing came entirely from his father.

Isaacson’s latest book records how, since the trip to Mongolia, he has subsequently taken Rowan through similar rituals with shamans in remote regions of Namibia, Australia and New Mexico. He has also established a riding school at his ranch in Texas, offering the ‘Horse Boy Method’ for children with autism, claiming that this achieves ‘miraculous’ healing results, perhaps not ‘a cure’, but dramatic improvement in symptoms. Here is another contradiction. On the one hand, Isaacson believes that autism is ‘not a problem to be fixed’ but is ‘a wondrous way of being’; on the other hand, he presents it as the result of demonic possession, perhaps a curse from his enemies (made during his earlier work as a human rights activist in Africa), or the malign influence of ancestors (perhaps Kristin’s mentally ill grandmother – hence the vodkha douche). For Isaacson, autism is a state of superior enlightenment and special gifts, but it is also a manifestation of ‘black energy’ – evil spirits that require exorcism.

Rupert Isaacson emerges as a father deeply committed to his son, but struggling to cope with the challenges of autism. He is particularly troubled by the difficulties in toilet-training Rowan, by his recurrent tantrums and by his social disengagement. He is unsparing in his account of the day-to-day difficulties of family life with an autistic child (Rowan is now 12) and the strains this imposes on all the family. But though he asks himself some good questions, he lacks the insight to come up with the obvious answers. Thus – ‘how could I be sure this was not all just New Age nonsense on my part?’, ‘Was I a complete fool for doing this – just on some kind of ego trip, and not doing this for Rowan at all?’ and (my favourite, his reflection on the demand from the Chairman of the Shaman’s Association of Mongolia for $125 each for the services of nine shamans) ‘Had I fallen into a nest of charlatans?’ As another hapless father might put it, ‘D’oh!’

As the father of an autistic son, I have no doubt that horse-riding can be a highly enjoyable and beneficial activity for people with autism. It combines physical exertion in the outdoors and interaction with both horses and people in a way that can enhance mood, improve behaviour, encourage sociability. Though we have never succeeded in getting our son on a horse (he refuses to wear any sort of hard hat), we have, like many parents, found much benefit from cycling (with an improvised saddle in a similar position to that used by the Horse Boy) and from trampolining. These activities are considerably cheaper and more accessible for most families than horse-riding – and they do not require any specialist training or expertise. I cannot see any advantage in dignifying these simple activities as ‘bicycle or trampoline therapy’ or any justification for making extravagant claims for their ‘miraculous’ healing powers.

While Isaacson’s claims for horsey-healing are fanciful, his promotion of shamanic exorcism is more worrying. He returns to primitive notions that developmental disorders are the result of evil spirits, the responsibility of malign forces or dead ancestors – or even of parents who must subject themselves to rituals of purification and mortification. Most of the rituals he describes are the familiar theatrical displays of scary masks, trance dancing, chanting and drumming, laying on hands, sucking bones and spitting out fluids. But there can be no justification for subjecting an autistic child to the sort of inhuman and degrading treatment described in his account. Nor can this ill-treatment be justified by the claims that Isaacson makes in relation to Rowan – that these rituals were followed by improvement in his toileting, his tantrums and his sociability. My son made similar improvements as he got older, without exposure to horses or shamans, as have many autistic children.

In his promotion of the cult of the primitive, Isaacson combines elements of Laurens van der Post and Crocodile Dundee. But, as the libertarian anarchist Murray Bookchin observes, this sort of retreat from into mysticism ‘is no trivial matter’: ‘It took thousands of years for humanity to begin to shake off the accumulated “intuitions” of shamans, priests, monarchs, warriors, patriarchs, dictators and the like – all of whom claimed immense privileges for themselves and inflicted terrible horrors on their inferiors on the basis of their “intuited”wisdom”.’ (Murray Bookchin, Re-enchanting Humanity: A Defence of the Human Spirit Against Anti-Humanism, Misanthropy, Mysticism and Primitivism, Cassell, 1995, p98.)

The warm applause for the Horse Boy film in North London reflects the enthusiastic reception received by Isaacson in the British press, where he has won something of a fan club: ‘With his long blond hair, biker jacket and distressed jeans [Isaacson] looks like a surf dude’ (Liz Hunt, Daily Telegraph, 6 March 2009) ‘With his flowing blond locks, [Isaacson] looks like a veteran of a 1980s rock band’ (Jessie Hewitson, The Times, 2 December 2012).

This reminded me of ‘a handsome, glossy-haired, charismatic hero to families of autistic children in this country and America’ (Justine Picardie, Telegraph Magazine, 8 June 2002) – a description of Andrew Wakefield, the former Royal Free gastroenterology researcher whose fraudulent research claiming a link between the MMR vaccine and autism did so much harm a decade ago. (It is scarcely surprising to discover that Isaacson endorses Wakefield – now a neighbour in Austin, Texas since he was struck off the medical register in the UK.)

Back in 2002, Picardie suggested that Russell Crowe could play Wakefield in a movie version of the MMR story; in the event Wakefield fans had to settle for Hugh Bonneville in the 2003 Channel 5 drama Hear the Silence. Now that Isaacson is planning a Hollywood remake of his film, he favours Robert Downie Jnr to play himself in the starring role. Given the popularity in the American cinema of sentimental voyeurism in relation to autism and cosmopolitan condescension in relation to aboriginal societies, the film seems destined for the Oscars. The only losers will be people with autism who will continue to be the object of atavistic fantasies and the targets of promoters of miracle cures.

Michael Fitzpatrick is the author of MMR and Autism: What Parents Need To Know (2004) and Defeating Autism: A Damaging Delusion (2009).

Autism CARES Act passes Senate HELP Committee

26 Jun

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee met today to review the proposed Autism CARES Act. According to The Hill, the bill passed the committee and will move on to the full Senate for vote (Senate panel advances autism research bill)

The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.

The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.

The next steps are–Senate vote, reconciling any differences between the Senate and House versions, and Presidential Signature.

Here’s the US Legislative process:


By Matt Carey

note: I serve as a public member to the IACC (which is part of the legislation discussed above) but all opinions here and elsewhere are my own.