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An open letter to Jim Carrey

22 Apr

Today on The Huffngton Post, actor Jim Carrey posted his thoughts about autism and vaccines. With his very first paragraph it became apparent how little Carrey understood the issues involved:

Recently, I was amazed to hear a commentary by CNN’s Campbell Brown on the controversial vaccine issue. After a ruling by the ‘special vaccine court’ saying the Measles, Mumps, Rubella shot wasn’t found to be responsible for the plaintiffs’ autism, she and others in the media began making assertions that the judgment was in, and vaccines had been proven safe. No one would be more relieved than Jenny and I if that were true. But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won’t be adversely affected by the MMR…

Point one Mr Carrey. The vaccine issue is only controversial to adherents of your belief system. Within scientific, medical, legal, autistic and parental circles its not even slightly controversial.

Point two, the three cases chosen were chosen – by the plaintiffs legal team – to represent their absolute best chance of winning. If they had won, there was an excellent chance all the cases that were suggesting MMR as causation would have just ‘won’ automatically. Thats why its called an Omnibus.

Point three, regarding the MMR, it has been firmly established that:

a) The data supporting the MMR hypothesis was fixed.

b) The science supporting the MMR theory was badly wrong – both badly done and exposed to contaminants.

You might also note that the court was not attempting to see if the children were ‘adversely affected by the MMR’, it was looking to see – using the three cases the legal team representing the families thought were the absolute best – if MMR caused autism. It didn’t. Thats probably why your Campbell Brown found it easy to say the MMR hypothesis was dead and buried.

You go to say Mr Carrey that:

Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

Yes, we did – and do you know how? With _good science_ – just like the science that established in the three MMR test cases that the MMR didn’t cause autism. And its fascinating that you bring up this parallel to the smoking issue and then later in your blog post invoke the name of Bernadine Healy. Healy – who’s ‘more sensible voice’ you say you’d rather listen to. Did you know Healy used to be a member of TASSC:

TASSC was created in 1993 by the APCO Worldwide public relations firm, and was funded by tobacco company Philip Morris (now Altria)….

According to Sheldon Rampton and John Stauber in their article How Big Tobacco Helped Create “the Junkman”, one of the forerunners of TASSC at Philip Morris was a 1988 “Proposal for the Whitecoat Project,” named after the white laboratory coats that scientists sometimes wear. The project had four goals: “Resist and roll back smoking restrictions. Restore smoker confidence. Reverse scientific and popular misconception that ETS (passive smoking) is harmful. Restore social acceptability of smoking.”

[own inserts]

Is that what you consider a sensible voice Mr Carrey? Someone who supported the tobacco agenda?

Moving on, you say:

If we are to believe that the ruling of the ‘vaccine court’ in these cases mean that all vaccines are safe, then we must also consider the rulings of that same court in the Hannah Polling and Bailey Banks cases, which ruled vaccines were the cause of autism and therefore assume that all vaccines are unsafe. Clearly both are irresponsible assumptions, and neither option is prudent.

First and foremost, the vaccine court did not rule at all in the Hannah Poling case. HHS conceded. And what they conceded was that Hannah Poling was damaged by vaccines resulting in ‘autism like features’. In fact, when we look at the the one piece of medical science carried out on Hannah Poling (co-authored by her own father), we see that only three of the symptoms described as being the result of vaccine injury appear on the DSM (IV) diagnostic criteria for autism.

As for Bailey Banks, this is a perfect illustration of both how the vaccine court in the USA was designed to work and also how terrible the evidence was in the three MMR test cases.

The Banks ruling (subtitled ‘Non-autistic developmental delay’ by the way) drew a line of causation from vaccine to PDD-NOS. It is able to do this as the burden of proof for any science presented to the vaccine court is ‘50% plus a feather’. In other words, it just has to be plausible, no causation needs to be shown.

What doesn’t seem in doubt is that Bailey was injured by a vaccine which resulted in a condition called ADEM. The judge in the case then went on to accept the plaintiffs position that the ADEM in turn caused PDD-NOS. He did this seemingly because there was no evidence to the contrary – e.g. no evidence that ADEM *doesn’t* cause PDD-NOS.

In any scientific situation – including civil court in the US – this would never have been accepted. The plaintiff would have had to have demonstrated that ADEM *did* cause PDD-NOS. And a search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’.

So, in the Banks case, because there was no evidence that ADEM does not cause PDD-NOS, they won. In every situation bar the vaccine court, the Banks’ would not have won their case. There is no science to support the idea ADEM causes autism.

Bearing this ‘50% plus a feather’ concept in mind it is clear just how utterly dreadful the evidence was to support the idea MMR caused autism. Not only could plaintiffs not provide any evidence that MMR causes autism, respondents produced reams of evidence to show it clearly doesn’t.

You carry on Mr Carrey to say:

I’ve also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who’ve been ignoring mountains of scientific information and testimony. There’s no evidence of the Lincoln Memorial if you look the other way and refuse to turn around. But if you care to look, it’s really quite impressive. For a sample of vaccine injury evidence go to http://www.generationrescue.org/lincolnmemorial.html.

Your analogy is ridiculous. I could go to any library and find evidence for the Lincoln Memorial without ever seeing it. In fact, what your analogy does is demonstrate exactly how blinkered and able to only face one direction at one time you and your colleagues are.

The evidence you present as that being supportive of evidence between a link between vaccines and autism is equally ridiculous and blinkered. I simply don;t have the time to tackle the mountain of misinformation presented on the page you link to suffice to say there’s not a single section that doesn’t have a major error. Most of them have been tackled on this and other blogs over the years.

Next you say:

In all likelihood the truth about vaccines is that they are both good and bad. While ingredients like aluminum, mercury, ether, formaldehyde and anti-freeze may help preserve and enhance vaccines, they can be toxic as well. The assortment of viruses delivered by multiple immunizations may also be a hazard. I agree with the growing number of voices within the medical and scientific community who believe that vaccines, like every other drug, have risks as well as benefits and that for the sake of profit, American children are being given too many, too soon. One thing is certain. We don’t know enough to announce that all vaccines are safe!

Mr Carrey, *vaccines do not contain anti-freeze* – for goodness sake, even Jay Gordon, Evan’s Paediatrician knows that! Did you also know that (to quote myself):

There’s also Aluminium in breast milk so lets compare the two.

According to this paper (which is from 1990 – any more up to date papers welcomed) the amount of Aluminium in breast milk is 49 ?g/L. The average amount of breast milk expressed per day is 0.85 liters.

This means that 41.65?g Aluminium per day is in breast milk.

Now, according to this paper, there is between 125 – 850?g of Aluminium per dose in a vaccine.

So, for a 6 year old, total Aluminium is between 2,125 – 14,450?g.

In real terms this means that after between 51 and 346 days breast feeding, a 6 year old will have taken onboard the same amount of Aluminium as from the total US vaccine schedule.

Now I couldn’t find out what vaccines contained the lower amount or which contained the higher amount. Even so, this means that if every vaccine a 6 year old has that contains Aluminium contains the highest possible amount, within a year of breast feeding they will have matched that.

Or to put it another way, an anti-vax tree-hugger soccer mom who doesn’t vaccinate her baby will have given him the same amount of Aluminium he would’ve had in six years after one year of breast feeding.

And thats of course, not even touched on the fact that:

In the Earth’s crust, aluminium is the most abundant (8.13%) metallic element, and the third most abundant of all elements (after oxygen and silicon)

And is found naturally occurring in sea water, fresh water, the human body etc etc.

[Regarding Formaldehyde]…There’s also Formaldehyde in Apples, Apricots, Banana’s and….ah, I lost interest. Lots of stuff. Including the human body.

So – how much is in vaccines?

According to this and using it in combination with the US vaccine schedule referenced above, we can see that the total amount of Formaldehyde in vaccines from the vaccine schedule for a 6 year old child is 1.2016mg (again, do your own maths, correct me if I’m wrong).

For comparison to that 1.2mg in all vaccines for a 6 year old, 1 (one) banana contains 16.3mg Formaldehyde.

Mr Carrey, you’ve got to stop throwing these scaremongering nonfacts around. Its damned irresponsible for a start.

Lastly Mr Carrey, you say:

If the CDC, the AAP and Ms. Brown insist that our children take twice as many shots as the rest of the western world, we need more independent vaccine research not done by the drug companies selling the vaccines or by organizations under their influence. Studies that cannot be internally suppressed.

In terms of autism, if you want to make a big deal out of the fact that ‘our children take twice as many shots as the rest of the western world’ then please consider this – the UK has less shots than you. We also have a higher prevalence than you. 1 in 100 vs 1 in 150.

And please also don’t invoke silly conspiracy theories. Think about how science works. A study is done, funded by Eli Lily for example. It is peer reviewed and found to be good quality and it is published in, lets say NEJM. Now, *every single reader of that study* can see exactly what methods and means were used to reach the studies conclusions. I ask you Mr Carrey, how much more independent can you get? How much more transparent? Basically anyone, anywhere can try and replicate that same studies results. If they can and a few others can – the results are good. If nobody can (think Andrew Wakefield) then the results must be bad.

And for goodness sake man, grow up, who is ‘suppressing’ what study exactly? Have you _any_ evidence at all that any study ever has been internally suppressed? Or are you just throwing this stuff out to scare people?

Mr Carrey, I loved the Truman Show but this isn’t it. There’s no god like figure overseeing every aspect of your life and wanting to control it. I ask you – get in contact with an actual scientist and go through your concerns with them. At the very least they’ll be able to stop you saying silly things like there’s anti-freeze in vaccines.

Why Generation Rescue doesn’t need a seat on the IACC

22 Apr

Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee
 (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, they f

For example, one “short term goal” listed on the Strategic Plan is

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

Groups like Generation Rescue, Safe Minds, the National Autism Association and TACA would like to see the Strategic Plan state that autism is caused by vaccines and call for research on the topic. Well, that’s one opinion. One that is already well represented on the IACC. That is only one reason why adding an IACC seat for Generation Rescue would be a bad idea. Here are the ones that come to mind readily:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

So, if the Generation Rescue position is already represented, why give them an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

Sorry, I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment–why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to the IACC, why should every faction of what is, really, one big group be given a seat at the table?

Yes, this is much like item (1)–all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Sorry, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again–they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though.

Let’s go back to 1983!

22 Apr

One of the recurring themes in the vaccines-cause-autism discussion is the concept that if we were to go back to the vaccine schedule of 1983, the autism rate would drop to 1 in 10,000.

This, of course, is pushed hard by Generation Rescue and Jenny McCarthy. GR even took out ads in USA Today to promote this idea.

Before taking a look at the 1983 vaccine schedule, I have to offer Generation Rescue a few corrections to their advertisement.

1) There is no “mandatory” CDC schedule. Sorry, the CDC has a “recommended” schedule. States work from that to create their own schedules. Since in almost every state one can opt-out with a simple form, even the state schedules aren’t really “mandatory”.

2) Rotavirus isn’t “mandatory” even on the state level. Perhaps GR could show me which state has the Rotavirus vaccine as part of their schedule, but I haven’t been able to find one.

That said, GR would like us all to go back to the 1983 schedule. Really? Did they think this trough? I don’t think so.

Take a look at the 1983 schedule that GR list in their ad. Two vaccines pop up to me right away–DTP and OPV.

Consider first the DTP. I thought there were good safety reasons to move from DTP (with the whole-cell pertussis vaccine) to the DTaP (acellular pertussis) vaccine. Is it OK to have more vaccine injuries in their flawed experiment to try to reduce the autism rate? That would appear to follow from GR’s suggestion to “turn back the clock”. Do they really want to go back to DTP?

In the 1983 schedule, kids got the OPV–oral polio vaccine (live/attenuated virus). Today, kids get the IPV–inactivated polio vaccine. OPV is used in places where people are trying to eradicate polio, since the OPV viruses can be shed in the stool. This leads to non-immunized people being protected as well, but may have a small risk of infecting others with paralytical polio. We could spend more time discussing this, but let’s just say that there are really good reasons to move from OPV to IPV.

For those two reasons alone, the idea of “turning back the clock” appears to be the result of very simplistic logic by people who didn’t spend 5 minutes considering their own proposal.

In addition to changing some vaccines (e.g. DTP–>DTaP), the schedule added vaccines. What are the “new” vaccines that Generation Rescue seems to be objecting to? Let’s go through them one by one. Let’s ask the question Arthur Allen posed to Jim Carrey at the Green Our Vaccines rally: which one(s) would they leave out?

Hepatitis B. This is such a common target that Dr. Bernadine Healy singled it out recently.

From Wikipedia:

However, only 5% of newborns that acquire the infection from their mother at birth will clear the infection. This population has a 40% lifetime risk of death from cirrhosis or hepatocellular carcinoma. Of those infected between the age of one to six, 70% will clear the infection.

Wow. 40% lifetime risk of death if a newborn catches HepB. How about the fact that 30% of children in the age 1 to 6 age range will not clear the HepB infection? Yep, they get a life-long, chronic condition that will kill a large fraction of them. Oh, you did notice that kids age 1-6 do catch HepB, right? So much for the “They aren’t at risk, why vaccinate them” nonsense.

Hib–Haemophilus influenzae type b. Otherwise known as Bacterial Meningitis. What’s that like?

Hib meningitis is fatal in about 5% of patients and causes brain damage in 10-30% of survivors.

And, for those who claim vaccines don’t work, EpiWonk (in his real life) showed clearly that Hib does work.

PCV–pneumococcal conjugate vaccine Prevents infection with Streptococcus pneumoniae. It causes 200 deaths a year amongst children under 5, it causes brain damage, deafness, and pneumonia. But, according to GR, we can do without preventing that.

Rotavirus. The Rotavirus vaccine is a constant target for groups like Generation Rescue. This is due in no small part to the fact that Paul Offit, an outspoken critic of the vaccines-cause-autism hypothesis, is a co-inventor of the vaccine in current use.

Again, from Wikipedia:

In the United States, rotavirus causes about 2.7 million cases of severe gastroenteritis in children, almost 60,000 hospitalisations, and around 37 deaths each year

My guess is that this would be particularly nasty for a child with a mitochondrial dysfunction. Just something to consider.

Hepatitis A. I find it odd that the Hep-B vaccine gets so much attention and Hep-A is all but ignored by vaccine critics. Hepatitis A appears to be a much less serious disease, where death or chronic infection are uncommon.

Influenza. This is a favorite vaccine for Generation Rescue to complain about. One big reason: flu vaccines often still contain thimerosal. Groups like Generation Rescue tend to ignore the fact that flu shot uptake is low. Otherwise, they would have to admit that the thimerosal exposure from vaccines is way lower than a few years ago–with no change in the “epidemic”. Note that of the 36 vaccines that Generation Rescue claims the CDC “mandates”, seven of them are influenza. Other than New Jersey, does any state require flu shots? More to the point, at the time that Generation Rescue put out their print ad, did any state require Flu shots?

As an aside, from NJ state law:

A student shall be exempted from mandatory immunization if the student objects thereto in a written statement submitted to the institution, signed by the student, explaining how the administration of immunizing agents conflicts with the student’s religious beliefs.

Yeah, that’s for older kids, but you get the idea. “Mandated” vaccines are “mandated” unless you don’t want them.

Varicella. This is “chicken pox”. This is often scoffed at by vaccine rejectionists because, after all, we all know it is basically harmless. Right? Well, while generally mild, some people do suffer severe effects or die from Chickenpox.

Generation Rescue would like to “turn back the clock”. Take us back to the simpler times of 1983. A simple time when people died from diseases we can now prevent. But, this is all to prevent autism, so it’s a good idea, right? Well, we saw how “turning back the clock” on thimerosal exposure worked in reducing autism…it didn’t. That doesn’t prove that changing the vaccine schedule won’t have an effect. It does prove that Generation Rescue uses faulty logic and, worse, doesn’t own their mistakes.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

Bernadine Healy gets it wrong

17 Apr

Following Bernadine Healy’s April 14th post in USNews, Orac dealt her a dollop of respectful insolence which is a very good read, as are the comments.

However, I wanted to do a kind of accounting on Healy’s post, to see just how firm a grasp on the whole situation she has. So, lets start.

McCarthy and Carrey and two colleagues from the autism advocacy group she founded, Generation Rescue…

Oops. Sentence two, first error. McCarthy did not found Generation Rescue, JB and Lisa Handley did.

…and parents are raising legitimate concerns, yet unanswered…

I have been on the front line of this debate for the last six years. Once upon a time the question ‘do vaccines cause autism’ _was_ a legitimate one to ask. But that question has been asked and answered. Since about 2003/4 there have been _no_ legitimate concerns raised by parents or anyone else. The MMR question has turned out to be both a con and the result of bad science. The thiomersal question is just a defunct hypothesis, given that thiomersal was largely removed from vaccines by 2002 and yet autism rates continue to climb. Despite desperate attempts to rebrand the autism/vaccine question (aka when you know you’re right and yet turn out to be wrong, know you’re right with something else) into questions about greening vaccines when simple searching reveals that newborns contain most vaccine ingredients either naturally or via breast feeding. Or the hellacious vaccine schedule despite the fact that the UK for example has a higher rate of autism (1 in 100 vs 1 in 150) but a lower amount of vaccinations.

This controversy might be resolved if we can focus on a few big questions, with an open mind…

Mistake number three. There is no controversy. In the field of _science_ asking the _scientific question_ ‘do vaccines cause autism’, there is no controversy at all. What there is is a very good and well executed media campaign to manufacture one. However, the facts remain the facts – no vaccine, no vaccine ingredient and no vaccine schedule either solely or together cause autism. There is simply no sound science to support that set of ideas. If there is a controversy it is how the media continue to let people stoke the fire of this idea.

Influenza vaccine, mandated here starting at age 6 months…

Mistake number four. As far as I can tell, the flu vaccine is not mandatory in the US. Certainly this article covering the 2008/09 flu season states:

It will not be mandatory for every child to have the flu shot…

Onward.

…a study from Canada last year found that delaying the diphtheria, tetanus, and pertussis vaccination just a few months decreased by 50 percent the risk that a child develops asthma…

Mistake number five. This has absolutely no bearing an autism. The article is entitled ‘The Vaccines-Autism War: Détente Needed’. Not ‘vaccines, asthma, maybe other stuff as and when I think of it-autism war’. As such this strawman argument has nothing to do with autism.

(Side note: Healy says we should read two doctors thoughts on the pros and cons of a flexible vaccine schedule. It maybe will come as no surprise that the doctor who thinks the US needs a flexible vaccine schedule is ‘Vice chair, Section on Complementary and Integrative Medicine’ of the AAP).

The goal is to get all kids appropriately vaccinated…

Mistake number six. The organisation Healy references at least twice, Generation Rescue, have this on the front page of their Facebook Group

“I found that the whole vaccine business was indeed a gigantic hoax…” –Dr Kalokerinos MD June 1995

“There are significant risks associated with every immunization and numerous contraindications that may make it dangerous for the shots to be given to your child…” — –Dr. Robert Mendelsohn MD, pediatrician

Onward again.

…Hannah Poling, for example, who has an underlying mitochondrial disorder and developed a sudden and dramatic case of regressive autism after receiving nine immunizations, later determined to be the precipitating factor…

Mistake number seven. Nowhere, repeat, nowhere has it been published that Hannah Poling’s vaccines were the ‘precipitating factor’ in her autism. If anyone thinks that it has been published I would like a link to that document. I’ve been asking for this for over a year now and no one has ever managed to show me where this is stated.

What _has_ been said is that following her vaccines hannah showed ‘features of autism’. As I have said numerous times, ‘features’ of autism is not interchangeable with autism. If it was, then the medical report co written by four doctors including Hannah Polings father Jon Poling would have simply said ‘autism’. In fact, this medical case study listed a number of symptoms (over 20) of which only three were found on the DSM (IV) (the official diagnosis for autism). She may well have been autistic and she was determined to have been vaccine damaged but that does not automatically mean one caused the other and in fact by the lack of any of the many other symptoms needed to reach a diagnosis of autism, we can see that they were not.

Amd again, onward:

Other children may have a genetic predisposition to autism, a pre-existing neurological condition worsened by vaccines, or an immune system that is sent into overdrive by too many vaccines, and thus they might deserve special care. This approach challenges the notion that every child must be vaccinated for every pathogen on the government’s schedule with almost no exception…

Not exactly any mistake here but this is very misleading. Its well know _already_ that some kids _do_ have conditions that are not amenable to vaccines. Less than 30 seconds of searching the CDC website led me to the appropriate information. I think it is incredibly disingenuous and very ignorant of Healy to comment in the manner she has.

Onward we trudge through the morass.

Paul Offit, an infectious-disease expert from the University of Pennsylvania who has been a frequent spokesman and adviser on vaccine policy (and by his admission has become wealthy by developing the now mandated rotavirus vaccine)

Mistake number eight. The Rotavirus vaccine has never been mandated anywhere that I can see.

So this is Dr Bernadine Healy, a scientist with 125 records in PubMed. Impressive until you realise that, just like this, they are 125 blog entries from US News. That means we can say that on average Healy has got 1,000 mistakes into PubMed.

Good going Bernadine.

Powerful Autism public service announcement

16 Apr

Autism Steals….

Autism leaves an empty shell…

These are autism myths. This public service announcement is a good video to show people to address these (and other) myths–it is professionally done and carries a simple yet powerful message.

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the PSA.

Leave the old stereotypes behind.

Very well said.

[edit]
Ari Ne’eman is correct–there is a national discussion on autism, and it is happening without the autistics. That is wrong.

Here is the captioned version (thanks codeman38!)

http://www.overstream.net/swf/player/oplx?oid=udtvrbt0rlao&noplay=1

Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

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Michael Fitzpatrick misrepresented by Age of Autism

15 Apr

Hardly news I suppose but on AoA yesterday Michael Fitzpatrick was misrepresented by someone called Teri Arranga.

Starting off by referring to Mike as a ‘backwoods doctor’ – something of an anti-British slur since Mike is a GP in London (I guess London is a backwoods now to AoA?) she soon went on to pretty much rant incoherently, built a few strawmen and finished off by quoting some other guy also ranting incoherently.

According to Arranga

…backwoods doctor Michael Fitzpatrick blasted Polly Tommey, founder of The Autism Trust, for the current campaign that seeks better supports and services for autistic individuals in the UK…

Hardly. Here’s what Mike led with:

In response to her ‘Dear Gordon’ billboard advertising campaign (see below), you have invited the British autism campaigner Polly Tommey to discuss her campaign with you on Wednesday 15 April. However, in the interests of children and families affected by autism, I hope that you will refuse support for her key activities – upholding discredited links between vaccines and autism and recommending unproven and untested fringe treatments.

Blasting? Good grief, where do these fragrant middle class ladies live? Its a statement of fact followed by a wish. None of it isn’t factual and its pretty much polite and to the point.

The fact is that the Autism File _is_ Tommey’s key activity. The other fact is that it is distinctly pro-extreme biomed and upholds links between key anti-vaccine researchers such as Andrew Wakefield. But Arranga sees some more blasting:

Fitzpatrick also blasted The Autism File magazine for including information about vitamins (oh, mercy me) and advertisements from “suppliers of biomedical products” (though none of them as lofty as Merck/Vioxx and Eli Lilly like Fitzpatrick’s cronies’ medical journals), among other things.

What escapes Arranga’s attention is that vitamins used as part of a quack ‘treatment’ for autism is both physically damaging (back in 2006 Mary Megson reported on the case of an autistic boy who was hospitalised by a DAN! doctor following an overdose of vitamins) and damaging to the future of autism research. Oh, mercy me indeed.

But no, Mike mentions the vitamins in passing. Arranga somehow neglected to mention the 15 page feature on Andrew Wakefield in the current issue of Autism File. It is peppered with ads for treatments from various biomeddlers.

Then we get to the ‘undermining’.

Fitzpatrick is trying to undermine the efforts of Polly and The Autism Trust to improve quality of life for autistic individuals and their families, many in woeful situations of deprivation and stress….Polly Tommey will be having meetings with members of the Prime Minister’s team in advance of the promised meeting with Prime Minister Gordon Brown himself. For Fitzpatrick to try to undermine this and to try to deny a charity the ability to do that on behalf of suffering individuals in a country deluged by autism is outrageous.

You can almost see the smoke coming out of Arranga’s ears. And for what? This is nothing but a strawman. Nowhere I can see is Mike saying Tommey shouldn’t go for her meeting with Gordon Brown. And nowhere I can see is Mike saying Tommey shouldn’t do the great things described. What he _is_ saying is that Brown should be very careful about the sort of things coming out of Tommey’s mouth about vaccines, treatments and cures. She is, on these issues, a know-nothing and I think it is absolutely correct for Mike to speak up for the autistic people and parents of autistic people who have no interest in the poor science peddled by Tommey’s publication.

Then after the strawman comes the conspiracy theory, this one bizarrely roping in Brian Deer for some totally mystifying reason:

If it threatens the Deer/Fitzpatrick camp when we want to get better services and supports for 1 child in 60 in the UK and their families, then we have touched a nerve. For example, how can trying to get decent housing and family supports threaten Deer and Fitzpatrick’s current repertoire of witch hunting? Why are they so scared that they would resort to petty tactics?

I mean, huh??? Can’t these people read? And whats this 1 in 60 number? The prevalence for autism in the UK is about 1 in 100. Weird.

Also frothing over in indignation is Oliver Jones, Chair of Autism Trust. He is ‘shocked’ _and_ ‘astounded’ (less caffeine feller):

How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon

Oliver – it seems Mike has a very clear idea. Once again, at no point did Mike say that Tommey shouldn’t meet with Brown or discuss her campaign. He is merely pointing out that Tommey is someone with some decidedly odd ideas about autism treatment and that Brown should show these ideas – if they happen to be raised – the door. He also quite rightly points out that if Tommey is really serious about getting better services and education she should join NAS and support their already existing campaigns in these areas. I’m sorry Autism Trust but the phrase ‘showboating’ does spring inexorably to mind.

Their closing paragraph is genuinely amusing:

Secondly, in respect of Michael Fitzpatrick’s ill-informed letter, we would recommend that we should not seek to highlight this man in the eyes of the UK government, but, instead, we should recommend that people write to him directly. People like Dr Fitzpatrick – like Brian Deer – should simply not be allowed to undermine genuine initiatives such as Polly’s – we cannot allow this censorship.

Yeah, damn that censorship Mike (and Brian Deer again???) -how could you dare to voice your concerns and opinion in a public way? Why couldn’t you just shut up?? Oh wait…isn’t that….censorship…d’uh.

AoA have suggested 2 letter writing campaigns. The first is to deluge Mike’s inbox with emails from AoA readers. The second is to flood the PM with emails supporting Tommey.

Thats fine. But Tommey and AoA should know that a second email campaign is now under way. I’ll ask my readers here to contact Number 10 by writing an email to Gordon Brown c/o Katie Martin (Press Office in Downing Street) on email kmartin@no10.x.gsi.gov.uk or to Michael Ellam (Director of Communications in Downing Street) on email mellam@no10.x.gsi.gov.uk.

I’ll be writing as the parent of a severely autistic child to express my support of Mike’s points regarding Tommey’s beliefs. I hope you will too. And note that AT is an international organisation – US citizens are valid contributors also.

The Somali Minnesotan Autism Epidemic

13 Apr

One of the most intriguing scenarios to pop up from the so-called autism epidemic happened in Minnesota in the US. It was noted that there were what seemed to be disproportionately high numbers of second generation Somali children in Minnesotan schoolrooms. Of course, this was immediately latched on to by the usual suspects, despite the caution issues by health authorities that until proper epidemiological studies had been done it would be impossible to say whether this really was a cluster worth investigation or just a coincidence.

On the 31st March, the Minnesota Dept Health released the study. Its a fairly substantial read. One thing immediately struck me about this:

Administrative prevalence of Somali children, ages 3 and 4, who participated in the MPS ECSE ASD programs was significantly higher than for children of other races or ethnic backgrounds

OK so this is what the families were saying. But there’s an extreme note of caution that should be noted here. This is basically CDDS all over again. Just like some believed that an increasing number of reports to CDDS meant that there was an autism epidemic and just as CDDS said there reports really shouldn’t be used to study these things, MDH are also saying:

Because of the study’s limitations, it is not proof that more Somali children have autism than other children…

This is a vital point. Back in 2005, James Laidler made the clear point that Department of Education data on autism are not reliable for tracking autism prevalence.

Sadly, the new Age of Autism editor, Abdulkadir Khalif, either misunderstood or elected to ignore this issue when he said:

It was obvious from the numbers that the issue of prevalence has finally been settled, and that there definitely is a cluster of autism in Minneapolis

It is clear from the report that Khalif has grossly overstated the case. Firstly, the issue of prevalence is far from settled. MDH seem to be solely using educational data which, as pointed out by Laidler, is not reliable for tracking autism prevalence. Indeed the phrase ‘administrative prevalence’ used by MDH reflects this. ‘Administrative prevalence’ refers solely to numbers of kids in educational programs. This is a clear distinction from ‘prevalence’ which is the proportion of individuals in a population who suffer from a defined disorder. Using only educational data gives a distorted picture.

As has been shown, the USDE data on autism are at odds with studies of autism prevalence, largely because the criteria used by the school districts (the source of the USDE data) to categorize children as autistic are neither rigorous nor consistent. They are inconsistent over time, as are the medical criteria, and are inconsistent from region to region. The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.

Secondly Khalif uses the word ‘cluster’ whereas the MDH report does not use it at all. And it is not a word that should be used in such a throwaway fashion – it has a distinct epidemiological meaning.

So clearly, contrary to Khalif’s assertion that the issue of prevalence has been settled, it has not. Contrary to his statement that there is a cluster, there has been no such epidemiological assessment or statement.

Here are some more quotes from the MNH report that Abdulkadir Khalif either chose to ignore or never actually read:

The fact that a child is participating in an ASD early childhood program is an indicator of educational need, but that child may or may not have a medically diagnosed ASD.

Further, Minnesota’s public school open enrollment policy allows children to attend special education programs in school districts where they are not residents. This raised the question of whether participation rates for Somali children might appear higher than the participation rates for non-Somali children because of an influx of Somali children who are not residents of the Minneapolis school district attending MPS ECSE programs for ASD.

Data on variability of ASD prevalence by race, ethnicity, and SES is limited and inconclusive, and apparent differences between racial and ethnic populations may largely be due to differences in case finding and service provision.

Across all assumptions and ASD program types, administrative ASD prevalence estimates for Somali children were uniformly higher than the U.S. parental reported ASD prevalence, but most of the 95% confidence intervals corresponding to the administrative prevalence estimates for Somali children contained the value of the U.S. parental reported ASD prevalence estimate – suggesting that the 2005-2006 administrative ASD prevalence for Somali children might be no different from what would be expected in the U.S. population of children ages 3 and 4 based on parental report.

So what does this mean?

It means that there are no firm answers and that Khalif is simply wrong to assert that there are.

Its always been one of the great puzzles to me that a section of (mostly) parents who demand accurate answers fast cannot seem to understand that there _are_ no accurate answers until the science – proper science – has been done. And that takes time. What legacy do these parents want to leave the autism community? Fast inaccurate mistakes? Or well planned and rigorous science that helps build the growing knowledge we already have?

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