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McCarthygeddon begins

1 Apr

Only yesterday Orac warned people of the upcoming wave of stupid about to break over us all. His only mistake in my view was confining it to the US.

Well today the wave breaks. In an interview with Time described by that publication as:

McCarthy and TIME science editor Jeffrey Kluger sparred over the causes of autism and the safety of vaccines…

Ihave to say that if this is sparring then I hope Mr Kluger decided against boxing as a sporting hobby. He all but rolls over and allows McCarthy to tickle his belly.

Theres a bellyfull of the usual facepalm inducing idiocy of course but also chilling warning about how far these antivaxxers are prepared to go:

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f—ing fault that the diseases are coming back. They’re making a product that’s s—. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

Thats right, Jenny is quite prepared to go for a Polio epidemic in the name of her unscientific cause. And who’s fault will it be? Why the people who make the vaccine that helps prevent Polio of course! And why? Because Google Phd McCarthy – the woman who used to think she was an Indigo and her son a Crystal Child in communication with an alien – believes that vaccines cause autism. Of course the lack of any reputable scientific evidence tends to indicate she might just be in error but y’know why let a little thing like accuracy get in the way of a body count?

Time out Jenny, you’re getting scarier and scarier.

Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

Did you think that was it? More MMR bull arrives

25 Feb

The recent decision by the Special Masters in the Autism Omnibus case that MMR/thiomersal can’t cause autism according to evidence presented by HHS and lack of evidence presented by Master et al hit the mercury militia hard. They genuinely thought they were going to win.

But, of course, there was a ‘Plan B’ ready just in case. Today we see its co-ordinated unveiling. In part one, that scientific heavyweight Jenny McCarthy, together with her partner Jim Carrey released a press release:

Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism…

Both the inference and the statement of fact are in error here. The United States Government has _never_ conceded that vaccines cause autism. I challenge McCarthy and Carrey to show the statement that contradicts me. Team McCarrey’s announcement today also fails to establish that the US government have conceded vaccines cause autism.

Of course, the historical reference is to Hannah Poling. As has been discussed numerous times, Hannah Poling’s autism has not been shown to have been caused by vaccines. I have asked various people, including David Kirby numerous times to provide back up to their belief the government have said vaccines caused ehr autism. They cannot. They have not. In point of fact, only three of Hannah Poling’s symptoms that were described by both HHS and a scientific case study co-authored by her father as those being caused by vaccines, tally with the DSM (IV) criteria for ASD.

The case of Hannah Poling is a red herring.

As we shall see, so is this ‘new’ case.

Team McCarrey go on:

The announcement comes on the heels of the *recently unsealed* court case of Bailey Banks vs. HHS

If by ‘recent’ one means July 2007 then they may have a point. But I don’t think ‘recent’ can really apply to a case which has had open access to it (Kathleen blogged about it in May 2008) for about a year and a half. So why lie? To add to the drama, whip up mystery and confusion of course.

But now we get to the meat of it – the actual ruling. In Part II of today’s coordinated attack, RFK Jr and David Kirby blogged about this case.

Kennedy jumps straight in:

…last week, the parents of yet another child with autism spectrum disorder (ASD) were awarded a lump sum of more than $810,000 (plus an estimated $30-40,000 per year for autism services and care) in compensation by the Court, which ruled that the measels-mumps-rubella (MMR) vaccine had caused acute brain damage that led to his autism spectrum disorder.

Whereas David is a tad more circumspect:

Is vaccine-induced ADEM (and similar disorders) a neurological gateway for a subset of children to go on and develop an ASD? That question will now become subject to debate…Special Master Abell had no trouble linking MMR to ADEM in Bailey Banks’ case. But linking his ADEM to PDD/ASD was more difficult.

So, lets rewind a little. Bailey was awarded a payment because he was found to have suffered vaccine induced damage. Cool. Thats the system working as it should – a child is damaged by a vaccine, they get compensated. What the MMR vaccine was established to have done in Bailey’s case was cause something called ADEM. What McCarthy, Carrey, Kennedy and David are now all claiming is that this ADEM resulted in an ASD diagnosis.

They rest their case on the conclusion of Special Master Abell:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

On the fact of it, it looks like they are right. But they aren’t.

Bailey has a diagnosis of PDD-NOS (Pervasive developmental disorder not otherwise specified) which is indeed a subtype of ASD.

However, whilst PDD-NOS is a subtype of ASD (alongside autism etc). ASD is in turn a subtype of PDD. As the National Dissemination Center for Children with Disabilities notes, the term PDD actually refers to a category of disorders and is not a diagnostic label. So when Abell refers to Bailey’s vaccine induced ADEM as leading to PDD he is not referring to ASD. He is referring to PDD. Not PDD-NOS, which _is_ a subtype of ASD but PDD, of which ASD itself is a subtype. Or, to quote Wikipedia:

PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs.

Abell made something of a worrying statement in his conclusion. I’ll quote from David Kirby:

Abell also chided MacDonald for his assertion that “all the medical literature is negative” in regards to an ADEM-PDD link. “However, soon thereafter, he corrected this statement by clarifying, ‘I can find no literature relating ADEM to autism or [PDD],'” Abell wrote. “It may be that Respondent’s research reveals a dearth of evidence linking ADEM to PDD, but that is not the same as positive proof that the two are unrelated, something Respondent was unable to produce. Therefore, the statement that ‘all the medical literature is negative’ is incorrect.”

Was any evidence that there _is_ a link between ADEM and PDD produced? I’ll have to read through more carefully. Its worrying that the SM is reduced to ‘chiding’ a witness for such a thing as a clarification of terms. Wasn’t he more worried that there was an extreme lack of evidence linking ADEM to PDD at all? Did Petitioners produce _any_ evidence that there was a link? A quick search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’. I don’t want to second guess a Special Master but it does make me worried that maybe he simply didn’t get some of the science.

David also lists some of the symptoms of ADEM:

Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

None of these say autism to me. I also did fine one ADEM paper in PubMed together with measles:

We report a seven year old male with measles associated acute disseminated encephalomyelitis (ADEM) despite having received measles vaccination in infancy. The diagnosis was based on serum antimeasles antibodies and MRI brain. The patient was managed with high dose corticosteroids along with supportive measures. There was a complete neurologically and physica recovery.

There was a complete mental and physical recovery. This doesn’t seem to indicate causation or autism.

In my opinion based on what I’ve read so far here we have a little boy who either already had or was on the cusp of PDD-NOS. He was also vaccine damaged resulting in ADEM….and thats where the link breaks down. It might be enough for 50% and a feather but the fact that PDD is not PDD-NOS, together with the total lack of any evidence I can see to link ADEM to PDD, let alone PDD-NOS speaks volumes.

Who carries the authority?

19 Feb

The recent Omnibus decisions are hoped by some to stem the tide of rabid anti-vaccine beliefs espoused by people who shame the name of autism advocacy. On Salon, Rahul K. Parikh says:

In the case of autism, science and reason have too often failed to reach people. And consequently they have turned to the courts. For those of us who believe in the scientific method, the autism trials have not been necessary. But judges, unlike doctors in their cold white coats, still command a great deal of respect, and so perhaps the court’s recent ruling will sink in and finally persuade parents to regain their confidence in vaccines.

Never happen Rahul, never happen. These same anti-vaxxers have already began spin campaigns not only against the legality of the verdicts but against the three Special Masters themselves. To this group, the Special Masters command no respect whatsoever and neither do their verdicts. Take this piece of rampant stupidity from Barbara Loe Fisher:

The U.S. Court of Claims special masters are hampered from considering evidence which has not yet been published in the medical literature regarding potential associations between vaccines and the development of regressive autism

I don’t see how it is possible to make a dumber statement. What she’s saying is she wanted the Special Masters to look at unpublished science. As is well known, unpublished science is not like an unpublished novel. Unpublished science means its science that has not been put through the rigour of peer review, not had its methods examined to ensure they are transparent and reproducable, not had its conclusions reviewd to see iof they are accurate and not had its data examined to see if it is usable. This unreviewed, unpublished ‘science’ is what got us to this stage in the first place. A ten year multi-million pound, dollar and euro effort to close down bad science.

So how does she and people like her get away with saying such things? *Just because they can* . Because people believe extremes and people believe celebrities. People believe bloggers and people believe those who have shared (or think they have) experiences. I’m not saying its right but its true. If anyone genuinely believes this ruling will shut the door on these people they’re wrong. For confirmation of that you need look no further than Rolf Hazlehurt, father of one of the kids who made up the three test cases from the Autism Omnibus.

If we win, we keep going.
If we lose, we keep going.
If we win, the going will be easier.
If we lose, the going will be more difficult.
However, the Court rules, we will keep going.

You have to understand. This is not about scientific truth – or even truth at all – to these people. Its about winning and its about pushing their antivaccine beliefs as fast and far as they can. Even as they claim to not be anti-vaccine they write emails to others clearly showing they are. One of these emails will come to light very soon I believe. Expect to see very familiar names on it.

To these people science has no authority. Doctors have no authority. The Special Masters have no authority. The only people who have authority – real authority – can probably be counted on the fingers of one hand. David Kirby. Jenny McCarthy. Maybe Dan Olmsted. If one of these people were to bow to the obvious and say so publicly then we might have a very different scenario. But they won’t. They have too much invested in esposuing the anti-vaccine line.

Mainstream media have a lot to apologise for also. The red tops, the broadsheets and all those hundreds of little bitty TV channels all over the US that gave the anti-vaxxers airtime in the name of impartiality and allowed them to scare away facts and reason, they need to reverse that policy.

But more than that, scientists and doctors need to get online and blog, get on Twitter and use them. Talk to people in their own language. Screw decorum. Ask people who’ve been using their blogs to support vaccines for _years_ what to do and how to do it. People like Oracand Ben Goldacre are prime examples.

This needs to happen because we’ve already lost one generation of kids to their loony parents. The loony parents who only recognise the authority of celebs, authors and each other in nests of email lists and blogs. If we want to give up another generation to the reach of the internet then keep on keeping on and hope that Rahul K. Parikh is right. But he’s not.

Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

Generation Rescue and Change.Gov

2 Jan

Sometimes you put off a project and it goes stale.  The moment has passed, the project never gets done.  Then again, sometimes you put off a project and it gets more interesting

Such is the case of a comment I saw on Change.Gov. I saw it and thought I’d include it in a future blog post I am considering (let’s see if I write it before it goes stale!). But, instead of missing the window to blog it, enough has happened that it is even more interesting.

Change.Gov is the Obama transition team’s website. In the spirit of open government, they are allowing people to submit questions for review. Other citizens (not only US, by the way) can vote on how important a topic is and, one assumes, the subjects with a lot of votes will get noticed by the transition team.

Given that, I was not surprised to find a question submitted by Generation Rescue’s Kelli Ann Davis. The question is copied below:

“Jenny McCarthy and Jim Carrey were named 2008 Couple of the Year (www.ageofautism.com) due to their advocacy work for Generation Rescue. Why hasn’t the Transistion Team made autism a top priority and sat down with the leaders of this organization?”
Kelli Ann Davis, Reno, Nevada

Since I first saw this, Orac has blogged about it. Not only did he blog it, but he did a very uncharacteristic move: he called for a poll mob ala P.Z. Myers. Yep, Orac got people to log in to Change.Gov and vote on Ms. Davis’ question. Given that one has to actually register before voting, the effect is impressive. At this point, 200 people are voting against Ms. Davis’ comment vs. 137 pro. I don’t recall the numbers from when I first saw it, but I do know that the votes were more “pro” than “con” when I first saw it.

This has not gone unnoticed by the good people at Generation Rescue. Kim Stagliano recycled not only the Age of Autism’s methods (name calling) but recycled an old post by Mark Blaxill as well. Frankly, I am amused. I found the original post by Mr. Blaxill amusing (not in the way he intended, I am sure), and I find it amusing still.

But, that is not enough to really blog about, at least in my book. Rather, I think it is worth taking the time to put in public why I opposed Ms. Davis’ comment.

Go back and read it again. The first thing that strikes this reader is the disingenuous nature of the comment. Jenny McCarthy and Jim Carrey were named couple of the year by the Age of Autism? Huh? I guess if they figure that the Obama (or, as Ms. Davis spelled it for some time, “O’Bama”) team doesn’t know the history of their blog, that might work. However, for those of us who know the Age of Autism as a rebranded “Rescue Post”–the blog of Generation Rescue–it is an odd move, to say the least:

Generation Rescue, which they call “Jenny McCarthy’s Autism Organization” voted Jenny McCarthy and her boyfriend “Couple of the Year”. Were I, a blogger on LeftBrain/RightBrain, to name Kev “LeftBrain/RightBrain’s pick of autism leader of 2008”, would you be impressed? See what I mean?

But, the disingenuous nature of Ms. Davis’ question is just the symptom, not the real problem. Actually, I see two big problems with Ms. Davis’ proposal. (1) It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey. And, (2) No surprise, I am sure, but I find Generation Rescue’s “Couple of the Year” to be highly inappropriate representatives of the “autism community”.

Let’s look a bit closer at these concerns, shall we?

First, keep in mind that Generation Rescue is an organization led by business people and PR people. Even without that, it’s pretty clear that they want to break out into being accepted as a mainstream autism organization. What better way than to say that they are advising the administration on autism issues? As to Jenny McCarthy, is there anyone who doubts that she has been rebranding herself as an autism “activist”?

Still wondering about the self promotion angle? Imagine the talk show circuit next year (and as many years into the future as Jenny McCarthy autism books sell):

“Oh, yes, Oprah, as I was just saying to Barack….”

In addition to Jenny McCarthy potentially cashing in on any meeting, how long before Generation Rescue would be touting themselves as advisers to the administration?

We are talking about the people who grossly inflated the number of people who attended the Green Our Vaccine Rally for effect. I’ve heard estimates of 500 to 1,500 attendees from people who were actually there. GR claims 8,000. If they would do that, they would play a meeting with the Obama team to the hilt.

Keep in mind, these are the people who publish blog posts claiming that HHS Secretary Leavitt stated in public that of course the government knows vaccines cause autism. To back that up, they claimed that someone overheard a conversation outside a church (if I recall correctly). If it were journalism rather than cheap blogging, that would be in the running for irresponsible story of the year. But, instead, it is just an example of the extreme lengths Generation Rescue and their team are willing to go to in order to keep their story alive. What would happen if they were able to talk about closed door meetings with people close to the Obama administration?

Moving on to my second concern: are Jenny McCarthy and Jim Carrey really appropriate as advisers to the transition team? Leave out the obvious questions of the whether people who propagate bad science and, in so doing, are endangering public health. I don’t have the space here to go into what has already been covered so well by Kev on this blog (and many, many others on other blogs, e.g. AutismVox or I Speak of Dreams ). Let’s just say I’d rather have Mr. Obama listening to the sources Mr. Bush used to formulate the decision to go to war with Iraq than listening to Jenny McCarthy on autism.

For example, remember how Jenny McCarthy’s story about her encounter with Barbara Walters changed dramatically between her book version and her interview version? Can we really have someone talking to advisers to the President of the United States and then “remembering” the exchange in whatever way puts her in the best light?

Consider that hypothetical Oprah show quote I had above. Flesh it out:

“Oh, yes, Oprah, as I was just saying to Barack, vaccines caused an epidemic of autism. I could tell he was listening and understood all too well, but I think that even he is afraid to admit the truth in public”.

As to Jim Carrey…well, remember his major stumble at the Green Our Vaccines rally? When asked what vaccines could be left out of the schedule, he said “tetanus”. Seriously, he had just spoken at a rally, but he hadn’t even done the homework as to what his own side thought. Sorry, he isn’t an expert who should be advising the administration, he is still at the level where Generation Rescue people should be being coaching him on what to say. Somehow I am flashing on the stories that have been leaked about coaching sessions with Sara Palin (Africa is a continent?). No, no, no. This is not a man I would want representing me even if I did subscribe to the Generation Rescue story. He just doesn’t have the depth of knowledge to meet the task.

To conclude, let’s answer one of the questions implicitly raised by Kim Stagliano’s blog post–why are people voting against Ms. Davis’ question? My answer: people aren’t voting against Ms. Davis’ question because it’s Kelli Ann Davis. They aren’t voting against it because it is promoting Generation Rescue or Jenny McCarthy (even though those are valid reasons). They aren’t voting against it because Orac told them too. They are voting against it because what Ms. Davis is proposing is a bad idea.

At least, that was my reason.

[Note: I made minor changes in this post shortly after publishing it]

Why?

24 Dec

You know me, I will tell you what I think and why I think it. But there is a line. A few lines in fact. These lines shouldn’t be crossed. Do not attack children. Do not make threats of violence.

In the now infamous EoH, doing these things is seen as ‘venting’. So here’s some venting from EoH for you. I think, as a conversation, it encapsulates exactly why these people need dragging out from under their rock and it encapsulates perfectly the bull that they are not anti-vaccine. Of course they are. They are (some of them) regulars on the AoA blog and stalwart supporters of Jenny McCarthy.

Joe Harris:
Look at how far acting civil has gotten us, teen agers and young adults growing old with us
and never living on their own. Until we get loud and start standing up for our kids, they
will always continue to win even though they are child poisoning bastards vaccines are fuxxking EVIL from the pit of hell. I for one am tired of being the nice guy while they poison more children Fuxxk them to hell and If someone sends them there before god doe’s I for one will not shed a tear. Because all they are is child poisoning and killing Bastards lower than Jeffery dahmer at least he had an excuse mental illness what theirs Greed, and thinking they are God. I don’t think they can make a safe vaccine that why McCormick of the vaccine comm. stated one time “Its as safe as a vaccine can be” If you think about that statement It can be taken two ways, another words a vaccine can’t be safe. Again may they all burn in hell. If this was a card game they have nothing they are just good at Bluffing on the other hand we the parents and the courageous researchers would have four aces. I will not apoigise for my anger for my severly autistic son is really stressing me right now.

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Lisa: thanks, I needed that 🙂 Lisa

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Lia Costalas:
Hello… Joe.. i agree with what you posted… all the politeness is getting us anywhere.. Lia

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sammysouthie: Unfortunately Joe we have become an apathetic society of sheep. Gone
are the days of public outrage and standing up for what is right.
Look at what happens when people vote….They complain and then put
the same people back in office. Seems the Pharmies have been having a
tea party…..They are throwing thier crap into the waters but the
public isnt.This is what happens when you have too much being civil.

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Lia Costalas: That is sad.. where are the SAM ADAMS???? (my personal favorite historical agitator)… Patrick Henry???? IT MUST BE US. to become agitators. I am tired.. of “meeting” with senators… ect… and in one ear.. out the other… when AIDS was first identified… wow… did society run to find cure.. cause.. treatement… that is all you heard… talk shows went all out.. NO CENSORING… now… we have censoring on autism… larry king shows cancelled… ect.. ect… Lia

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Amy W. Osborne: isn’t that what is behind the vaccination anyway? to injure people just enough so that they are preoccupied and docile, follow orders, etc etc?

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sammysouthie: —Makes one wonder, doesn’t it

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Roz: The only ones left standing will be us. Of course, WE will be preoccupied with curing our little “canaries in the coalmine.” Thank God for them, huh? Now we all have learned an invaluable lesson.

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Laura Cox: Anger is ok. We all feel exactly the same way you do. I push it aside
because, if I don’t, it will cripple me, being so powerless to change
the status quo overnight. I can protect my son from further harm, but
I cannot protect all of my nieces and nephews from this grievous act
called vaccination. However, we all need to let it out now and then
(anger) and this is a good place to blow off steam. Our thoughts are
with you.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

The mean number of current treatments being used by parents was seven….

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

Measles rising thanks to MMR/autism idiots

29 Nov

There’s a whole bunch of flat-earthers who insist despite all scientific evidence – both epidemiological and clinical – to the contrary that MMR causes autism. Jenny McCarthy for example.

In the UK this belief started 10 years ago thanks to the pomposity of Andrew Wakefield’s grandstanding and utterly fact-free press conferences insinuating a link between MMR and autism. Being of a generous nature, Wakefield decided to share his wisdom with America – this means that the Americans can look forward to sharing in the good tidings:

Fears that up to 100,000 children in England could be infected with measles in a major epidemic were raised today after government figures showed a sharp rise in cases of the disease.

The number of measles cases in England and Wales so far this year has exceeded 1,000 for the first time since 1995, according to the Health Protection Agency (HPA).

But so what right? Measles is nothing!

One in 2,500-5,000: Death
One in 10: Hospital treatment
One in 1,000: Meningitis

So, no. Measles isn’t ‘nothing’ its a disease that 10% of the time hospitalises people at the very least.

Lets be absolutely clear what the MMR/autism flat-earthers are doing here. By living in denial about the science that has clearly established no link between the measles component of MMR and recommending ‘spacing out’ vaccine schedules, or not having the measles component at all and going with an ‘alternative’ vaccine schedule these idiots are directly placing your child and you in the firing line of what is a fatal disease.

If your child has not been vaccinated with MMR, please – please – take them now. Don’t let the flat-earthers get away with it.

If you’re an MMR/autism idiot please take yourself and your brood off to an island somewhere where nobody else lives and where the rest of us don’t have to share the consequences of your idiocy.

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

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