Archive | February, 2008

New Stuff

19 Feb

Couple of bits and bobs – two new pages on the site, both at the top. ‘Stuff’ takes you to some downloadable goodies for your browser and/or blog. ‘Timeline’ takes you to a timeline (oddly) of events surrounding the vaccine/autism hypothesis.

Enjoy.

In other news, the AAP Day went well yesterday. Along with the 60+ emails I got to send on to Dr Minshew last week, over a dozen blogs, as well as mine, posted about the AAP thing:

Marla Baltes
One Dads Opinion
Telstra
RunMan
Mom Not Otherwise Specified
Whiterer on Autism
Club166
Autism News Beat
Respectful Insolence
AutismVox
Maternal Instincts
Good Math, Bad Math
Grey Matter/White Matter
Aspie family
Terra Sigillata
Andrea’s Buzzing About
Mike the Mad Biologist
I Speak of Dreams

Its good to see the autism, autistic and science blogging communities getting together on this issue.

Email From JB Handley

19 Feb

From: J.B. Handley”
to: kevleitch@gmail.com
date: 19 Feb 2008 03:40
subject: Fair warning

Kevin:

As of this morning, I have retained counsel with offices in London and Birmingham to monitor your blog closely.

I have run a highly ethical business for 12 years. I have been scrutinized by the most sophisticated investors in the world and now manage more than $1 billion of their capital. My business dealings have met the highest ethical standards at every turn.

I will defend any attempt by you to sully my reputation in the business world with whatever resources are necessary to do so.

I do not think this is a great use of your time. But, if you decide it is, so be it. As you know by now, I never back down from a fight.

I have no interest in ever writing about you in the public realm nor having any sort of interaction with you whatsoever. However, if you choose to provoke me, as you recently did, I will respond.

I would be more than happy to move on and never interact with you again. It’s up to you to decide how you would like our future interaction to look. As I have said many times, my gripe is not with you and I have no interest in fighting with other parents of autistic children, we all have enough on our plates.

J.B. Handley
Managing Director
Swander Pace Capital

What follows is part of my response.

I have absolutely no interest in your business dealings whatsoever. You can do whatever the hell you like. I hope your company goes from
strength to strength – or fails miserably – I don’t give a rats ass either way.

However, what I *am* interested in is your role in companies you sit on the board of who seem to have business interests very much at cross
purposes with what you advocate regarding the nature and cause of autism.

So if you think I’m going to be attacking the way SPC does business you can rest assured I couldn’t possibly care less. In fact if you think I’m going to be attacking SPC at all (or any subsidiary or related company) you can rest assured I won’t be.

What I might very well discuss however is your personal ethics in relation to the companies you sit on the board of and its my opinion that its *this* that is really worrying you. And worrying you to the point where you are attempting to strong arm me into not talking about it.

So – for now – any discussion regarding JB Handley, any links to joke websites is off-limits. I don’t have the money or resources of JB Handley.

I’ve disabled comments for this post but if you’re a blog owner discussing this, please let me know via email.

UK Libel Overview.
US Libel Overview.

AAP needs help of rational parents

18 Feb

As part of the welcome addressing of the needs and concerns of the real autism and autistic community in regards to science and as part of their efforts to address the pseudo-science and quackery of the anti-vaccine agenda of certain autism related groups, the AAP are looking for rational parents to help them. I will certainly be offering my details should they be of service and I would urge any parent of an autistic child who is sick of hearing the unscientific and self serving agenda of such groups – groups who not only belittle autistic people but also gladly and readily place the health and well being of others at risk for absolutely no purpose to contact the AAP to offer their details also.

If you wish me to pass on your details, please either leave your name and email address in the comment section of this post, or email them to me or you can email the author of the AAP letter reproduced below.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Lets take the example of just one worldwide disease that is vaccine preventable. Measles. In Jan 2007 The Guardian reported:

Between 1999 and 2005, there was a 60% reduction in annual measles deaths worldwide, from 873,000 to 345,000….

Fantastic news. But let that figure of 345,000 stay in your mind. That was how many people died all over the world from measles in 2005.

What do the countries most affected by measles think?

Urbain Olanguena Awono, Cameroon’s public health minister, described the fall in deaths as a spectacular achievement. “We are winning the fight against measles, which has long killed, sickened and disabled our children,” he said. “Our determination is stronger than ever to make measles history by further strengthening our measles control activities, working in concert with our international partners and setting aside resources.”

And who form part of their international partners I wonder? Merck? Wyeth? Bayer? SafeMinds? TACA?

There is even cautious talk of the possibility of ridding the world of measles, but while the eradication of smallpox was a triumph, the long struggle to eliminate the final reservoirs of polio in a handful of countries has shown how difficult it is to stamp out a disease.

And it is the same with measles – a handful of countries are holding back the eradication of measles.

Measles eradication could conceivably be stymied not by the developing world, but by dissenters in rich countries such as the UK

Thats right. My rich, upper middle class fellow countrymen and women. And their American rich upper middle class counterparts. Some of whom think the idea of AAP appealing for help to save kids lives is funny to the point of making jokes about the deaths of children:

From: krstagliano
Date: Feb 16, 2008 6:57 AM
Subject: [EOHarm] Re: JB, email from AAP looking for sick kids
To: EOHarm@yahoogroups.com

Can you imagine the ad campaign? Dad sitting in a confessional proclaiming his remorse and grief for not vaccinating his child, while the bell tolls in the background. Then a quick shot over to a small pink casket with a dolly on top and mother on her knees sobbing in front of the altar……[]

KS

Hilarious eh? Those whacky guys and gals at EoH really know how to make with the funnies.

Please don’t let this morally and scientifically bankrupt bunch of me-me’s keep hogging the media with their poor science. Support the AAP in the US and the NHS in the UK.

Autistic Guinea Pigs

15 Feb

During WWII a number of German doctors conducted painful and often deadly experiments on thousands of concentration and death camp prisoners without their consent.

……..

The second category of experimentation was aimed at developing and testing pharmaceuticals and treatment methods….

josefmengele.jpg

Source

Its always a dangerous thing to invoke the spectre of the Nazi’s. There is a profound risk of undermining or belittling the full horror of what happened in Europe during the second world war. I hope I don’t do that.

However, there are times that I simply know of no other way to illustrate the sort of things that one is sent from the various extreme biomed groups that exist on Yahoo and elsewhere. Who can forget Christine Heeren’s poor son being chelated with garlic and vinegar? Or the young mother being urged to chelate her 9 month old baby because she reported he was ‘smiling inappropriately’? And of course, there’s the death of Tariq Nadama.

All these things are simply experimentation on children, pure and simple. In goal and in safety they are no different that any of Mengle’s.

Does this mean parents are too blame? I don’t know. Is Heeren ‘to blame’ for what is being done to her son? No, I don’t believe so. The practitioner performing the treatment is. He (or she) is the one milking parents who believe they are desperate. They are the ones pawing over the traits of children for clues to a big payday.

So no I don’t think parents are to blame. However – what they are is _responsible_ . At some point one cannot keep saying ‘I didn’t know’. At some point it must filter through that injecting a mix of garlic and vinegar into a child isn’t going to do a damn thing. At that point, the parent becomes complicitly responsible. This is why I have such a hard time with the Nadama’s suing. I cannot believe that they didn’t know what they were doing was quackery. It was not a case like the one I touched on yesterday where parents were misled into a dangerous and nearly fatal procedure simply to further the beliefs of a quack.

There is a Yahoo Group – a very busy one – called MB12 Valtrex which discusses these treatment options for autism. Recently a mother to a two and half year old posted, listing what he was on and what he was like:

GFCF – CF since September ’07
Diflucan
Singulair
Glutathione Cream daily
B12 injections every five days, now going to every 3
Cod Liver Oil
Vitamin A
MultiFlora Spectrum Probiotics
Enzyme Complete DP-IV
Super Nu Thera
Vitamin C – 500 mg per day

I just look at him and he seems SO MUCH worse since we started this. I understand the yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it’s getting worse when we’re suppose to be on the right track now.

The past few days he’s had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop … then what is it?

That’s a daily list of meds by the way.

Its unutterably depressing to read this sort of thing and know that this poor kid is being experimented on by the DAN! doc and this poor mother (new to the whole extreme biomed community) simply doesn’t have enough knowledge or energy to stand up to this quack.

The community elders of course – those who have become complicit over the years, those who should know better – encourage her to push on:

I know it’s hard to watch your child get worse when you’re trying so hard. Just keep looking and you’ll find the answers. It took me several months to realize that I needed to keep looking for answers. And please, talk to your own doctor about the trouble you’re having. I know how you feel, I’ve been there (and still am some days).

Just keep looking. Right. This from a person who admits she’s still pretty much where the original poster is.

An amazing veteran Mom told me once that when her kids react poorly, it just keeps her going because she knows she’s hitting something and, although it may not be the right supplement at the right time, she’ll eventually get it right.

She’ll eventually get it right. Yeah. And at what cost?

Does it strike no one else as odd that there _are_ all these ‘veteran moms’ _at all_ if this extreme biomed is supposed to work? Why are they still around and doing treatments and pushing experimentation? Surely their kids are ‘recovered’? Or maybe they’re like Erik Nanstiel’s daughter – still ‘low functioning’ after 6 years of extreme biomed and all this extremeism is there simply to assuage mum and dads self inflicted guilt – guilt carefully nurtured by the quacks lining their pockets at these parents expense and their kids childhoods.

Andrew Wakefield Responds

14 Feb

Andrew Wakefield has responded to the latest MMR Study showing no link between the vaccine and autism.

Just to recap, the latest Baird et al study looked at whether autistic kids and non-autistic controls showed any variance in their measles antibody response. They don’t.

The measles aspect of the MMR vaccine is what Wakefield’s hypothesis relies on. He says because its a live virus its casing gastric issues and then autism in some kids. This study looked to see if there was any evidence of measles-virus in the blood of these kids. There wasn’t. They looked to see if any of the autistic kids had evidence of gastric issues over and above the average. They didn’t.

But Wakers thinks this isn’t good enough.

The study is severely limited by case definition in the context of the crucial ‘possible enterocolitis’ group………….We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children. Almost none of these children with biopsy-proven enterocolitis would fit the criteria set out above………….The requirement for the current presence of these symptoms, for 14 or more days continuously, shows a singular lack of understanding of the episodic, fluctuating, and alternating (e.g. diarrhea/constipation) symptom profile experienced by these children

Wakers thinks that the criteria for defining enterocolitis that Baird et al used was too strict. He says it will occlude the group he’s identified.

He’s probably right. But not in the way he thinks he is. Could it maybe be that _his_ definition of enterocolitis is too slack? His definition includes:

In our experience, ASD children with histologic enterocolitis typically have 1 to 2 unformed stools per day that are very malodorous and usually contain a variety of undigested foodstuffs. This pattern alternates with that of “constipation” in which the unformed stool is passed after many days of no bowel movements at all, and with excessive straining.

With which he claims is ‘identified mucosal inflammation in excess of 80%’ of his kids.

Thing is, a PubMed search for ‘mucosal autism’ returns 20 results. Of which only one support the idea of inflammation – One of Wakers own papers. In fact the only person I could see using the term ‘histologic enterocolitis’ was (you guessed it) AJ Wakefield.

The question immediately occurs: Of the ‘several thousand children on the autistic spectrum who have significant gastrointestinal symptoms’ why hasn’t there been any published, peer-reviewed, replicated, science written up by Wakefield? Why hasn’t anyone else managed to find 80% positive results and published peer reviewed science about their results?

Could it be that its only the team who have screwed up their results that find what they want to find? I think so. Lets quote Stephen Bustin once more.

Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. If you look at the Cts for the F-gene which they reported as positive you can see they’re the same. Now, if this is degraded RNA yet I’m getting the same Cts for my F-gene target this can’t be RNA because it would have been degraded.

That’s what the GAPDH showed me. Now, if it isn’t RNA it has to be DNA. If it is DNA it can’t be measles virus it has to be a contaminant.

Plain English – Wakefield scoped kids. Sent samples to Unigenetics. They should’ve told Wakers the samples were rubbish. They didn’t. They analysed rubbish samples which were contaminated. What they found wasn’t measles virus.

A frequent complaint from the Wakefield apologists is that by analysing blood samples rather than gut tissue, science teams are not comparing like-for-like. There are a number of reasons why this is questionable.

Firstly, there has to be a _reason_ for scoping children. It is not a straightforward procedure.

Towards the end of last year, an autistic child who was scoped following a recommendation by Simon Murch, a colleague of Andrew Wakefield’s, was awarded £500,000 damages after his bowel was perforated in 12 places.

An autistic boy has won a £500,000 payout after the hospital at the centre of the MMR scandal carried out an operation that was ‘not clinically justified’.

Jack Piper, then five, was left battling for life after the procedure, which his parents claim was carried out to establish links between his condition and bowel problems.

His bowel was perforated in more than 12 places during surgery at the Royal Free Hospital in North London.

…………

The colonoscopy was suggested by Professor Simon Murch. He is being investigated by the General Medical Council over allegations that he carried out invasive tests including colonoscopies on 11 other children contrary to their best clinical interests.

It is an ethical issue – is a scoping procedure ethically justified? The answer is ‘no’ – that hasn’t stopped Wakers doing ‘thousands’ though apparently.

Secondly, is there any reason why looking blood is not good enough? Awhile ago, I asked a Doctor (who wished to remain anonymous) who told me:

measles is a lymphotropic virus, even more so for the vaccine strain which has been selected to exploit the CD46 cellular receptor. If there is a persistent MV infection the most logical place to detect it is in cells that it is most adept at infecting. Lymphocytes [a type of blood cell]

(Insert mine).

So, there’s not really any reason why blood cells wouldn’t be suitable to check for measles virus, despite Wakefield’s opinion.

And in fact, at least one team _wanted_ to use Wakefield’s samples but their request was ignored:

The groups of investigators that either had access to original autism specimens or investigated them later for measles virus detection were invited to take part in the study but failed to respond. Similarly, it was not possible to obtain clinical specimens of autism cases from these investigators for independent investigations.

Now I have to wonder why, if Wakefield et al are claiming that only scoped samples are any good, or that blood is no good they didn’t hand over the samples they had harvested with the gratitude of a team expecting to be replicated.

Maybe they didn’t really want another science team looking at these samples. Maybe they feared what another team would find.

And what about this inflammation Wakefield alleges to have found? Turns out that its possible to screen for inflammation without the need for scoping.

Fecal calprotectin is a marker for a range of gastric issues, notably IBD (irritable bowel disease) and Crohn’s which it has positive results for.

A 2002 study Effect of Pentavac and measles-mumps-rubella (MMR) vaccination on the intestine looked at:

if MMR vaccination is associated with subclinical intestinal inflammation, which is central to the autistic “enterocolitis” theory

To do this, the team:

….studied 109/58 infants, before and two and four weeks after immunisation with Pentavac and MMR vaccines, for the presence of intestinal inflammation (faecal calprotectin).

The results were:

There were no statistically significant differences in faecal calprotectin concentrations at any time points (p>0.25) or when assessed in subjects studied before and after Pentavac (p>0.2) or MMR (p>0.3) vaccination

and

There was no evidence that either Pentavac or MMR vaccination provoked subclinical intestinal inflammation in any of our apparently healthy children during the four week post-vaccination period. This lack of a detectable intestinal inflammatory response suggests that the measles vaccine virus itself is not enterotoxic in healthy infants which argues against the MMR induced autistic “enterocolitis” theory.

And so we come back to the bottom line. What direction does peer reviewed published science take us in? It takes us away from Wakefield.

There are no good reasons to believe that blood samples are not good enough to compare with gut samples and if Wakefield believes otherwise, why didn’t he provide the samples to the Afzal team when asked to?

There is no good reason to justify dangerous, invasive procedures such as the one Wakefield has used on thousands of kids and which left one child fighting for life with a massively perforated bowel. Fecal calprotectin is more than adequate as a marker of intestinal issues and using this method reveals no association between MMR and autism.

Bev Talks Back To Jenny McCarthy

10 Feb

Bev has created a bunch of ASD LOL Toyz. Below is my favourite.

lollizard.jpg

MMR Smoke and Mirrors

8 Feb

In the days following the latest in an increasingly long line of studies repudiating the MMR/autism hypothesis, adherents to this belief system have clung wildly to the flotsam and jetsam that is pretty much all that is left to hang on to.

On the ADC Online forum, John Stone encapsulates this position with a letter I’ll go through point by point:

Of the original 1770 Special Educational Needs (SEN)cases in this study 255 were Autistic Spectrum Disorder (ASD). Of the 1770 735 dropped out, then a further 780 were excluded for reasons which are not transparent. 255 were left (a different 255 from before): some ASD, some just SEN but we do not know in what proportion. Then, exactly 100 were excluded because of inadequate blood tests. Of the remainder 101 had ASD (less the 40 per cent of the original 255 autistic cases). None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR.

This is numerical hoopla and means nothing. The key to Stone’s frustration is the last sentence of this paragraph and the first one of the next:

It is not clear what the scientific purpose of this study is…….None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR. This, of course, makes this a distinct group from the children referred to Andrew Wakefield and his colleagues at the Paediatric Gastroenterology department of the Royal Free Hospital in the 1990s and slighlty beyond.

Stone is arguing that because none of the ASD subjects were found to have bowel issues that disqualifies them as being like Wakefield’s subjects.

Methinks someone has missed the point.

The issue is one of clinical science. Wakefield claims to have found a clinical link between the measles live virus component of the MMR which causes bowel issues with associated autism. However, the Cedillo hearings drove a rather large nail into that particular coffin.

Professor Stephen Bustin is the worlds foremost PCR expert. Bustin uses PCR every day in his work, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the ‘A to Z of Quantitative PCR’ which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences. His testimony regarding the Unigentics lab used to find the measles virus in the guts of these autistic kids was invaluable.

Bustin examined the Unigentics lab findings and procedures in great detail (spending over 1,500 hours in the lab itself) and found that the lab (which has now gone bust as a business) made a fairly basic error of science when looking at Wakefield’s samples:

“…Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. If you look at the Cts for the F-gene which they reported as positive you can see they’re the same. Now, if this is degraded RNA yet I’m getting the same Cts for my F-gene target this can’t be RNA because it would have been degraded.

That’s what the GAPDH showed me. Now, if it isn’t RNA it has to be DNA. If it is DNA it can’t be measles virus it has to be a contaminant.”

In other words, the samples Wakefield provided to Unigentics were useless because Unigenetics own documented lab procedure says they were. But they used them anyway. The results were a bombshell. If the RNA is useless (which the lab process defines it as being) it can’t actually be RNA. If its not RNA then it must be DNA and if its DNA then it can’t be measles virus because measles virus doesn’t exist as DNA.

What the Unigentics lab detected in Wakefield’s samples were contaminants. There’s no way that Unigentics could possibly have been detecting measles virus.

This was backed up by Chadwick who checked Wakefield’s work (at his request). He also did a PCR test.

Q. What results did you receive from the gut biopsy materials for measles RNA?
A. They were all negative.

Q. They were always negative?
A. Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.

Q. Did you inform Dr. Wakefield of the negative results?
A. Yes. Yes.

So not only are the samples Wakefield provided useless, the testing he asked Chadwick to perform showed they were useless. And yet he went ahead anyway.

Its also worth noting that every subsequent piece of MMR science (save one unpublished poster presentation) went through Unigenetics lab and went through the same process as Wakefield’s.

So lets be frank – the idea that Wakefield found measles virus in the gut of autistic kids is plain and simply wrong. He screwed up.

The issue then becomes one of probabilities: given that there is no scientific reason to believe MMR causes autism with bowel disorders, it is nonsensical to only look at autistic kids with bowel disorders. And in answer to Stone’s question ‘It is not clear what the scientific purpose of this study is…’ the answer is plain – it has scientifically illustrated that autistic kids had exactly the same measles antibody response as non-autistic kids. No difference. At all.

Stone continues to attempt to muddy the scientific waters:

There is presently not enough consensus about the etiology of ASD to assume there is any single origin, nor anything to rule out ASD subjects having gut symptoms which justify on occasion invasive procedures. The NAS apparently consider that there is a sub-group which is being denied sympathy, investigation or treatment, and this is in itself troubling. It also suggests that this study is not representative since no such cases are included, and it does not address their problems.

This is slipperiness taken to almost artistic levels. Stone is quite right there is no consensus about etiology of autism. That does not mean we cannot say what doesn’t cause it though. And based on the available science, MMR ain’t it.

The paper further does not attempt to claim that autistic kids don’t have gastric issues and Stone’s implication that it does and his attempt to gain the mainstream ground by invoking the name of the NAS is grasping and dishonestly representative of the NAS’s statement. They do _not_ claim, infer or consider that there is any such sub-group. What they suggest is that the MMR debacle has led to some doctors dismissing some parents fears about their kids bowel issues as hysteria. This is, of course, unacceptable but Stone is simply attempting to manipulate the NAS statement for his own ends.

“The NAS warning relates to the GMC hearing involving doctors Wakefield, Walker-Smith and Murch which is set to resume on 25 March approaching. I do not think it is being unduly cynical to query the publication of this study at the present time as a media event, bearing in mind that it seems to have been carried out five or six years ago.”

This is either again deliberately misleading or an example of conspiracy hysteria. From what I can tell the study was commissioned five/six years ago. Not carried out.

Stone concludes:

Meanwhile, the plight of autistic children with gastro- intestinal symptoms is excluded both from the study and public attention, as if they did not exist. The NAS statement warned of “creating further confusion” and this is precisely what this study and its media exposure has done.

Children with gastro issues and autism were not ‘excluded’ they just weren’t found. Maybe they really don’t exist? Maybe Stone would’ve preferred that the study authors fabricate a few subjects?

The bottom line of this gastro/autism issue is that there is no science to back up the opinion Stone has. On the other hand there is plenty of science that indicates there is no link between MMR and autism. Far from this study creating confusion, it has simply shown up the shortcomings of Wakefield’s bad science and Stone and his ilk are in reality the people desperately attempting to create enough confusion for Wakefield to escape unscathed.

Please Support Autism Science

8 Feb

You may be aware that the anti-vaccinationists have been conducting a smear campaign both publicly and privately against Dr Nancy Minshew lately because she stated quite rightly it was time for the autism community to move on.

I thought it might be nice if she had a few supportive emails land in her inbox as well as the wall of hate she’s no doubt getting from elsewhere.

I’ve set up a simple form letter requiring a signature from you. The email will be checked by me and then forwarded on to Dr Minshew.

Cloud Nine

7 Feb

 I should have realised when the noise of jumping and running and general mayhem stopped and everything went quiet, but I made the mistake of presuming that, at  10.30  at night and after a busy day at school, he might actually be tired. He’s been in a mischevious mood all night though ,the last time I checked on him he covered my face with my hair and then threw some megablocks down my top.

 As I walk into the room the first thing I see is him drawing happily, his head bent down, his hands busy scribbling away. I breathe a sigh of relief. Then I look around and notice the wall by one of the beds and his younger brother’s mattress (younger brother has moved the sheets up with his sleeping kicks). In the fifteen minutes since I last checked on him he has been busy drawing suns and rain and happy little clouds on said walls and mattress. Then he looks up and I see, judging by the way he has been covering his face with blue felt tip that he has been probably trying to make himself into a happy little cloud as well.

 My first instinct is one of calm. I know he has a tendency to get the felt tips everywhere and to draw on himself – and his brother sometimes – which is why I always get him the super washable ones, a quick wipe of the flannel and he’s clean. Of course, it would have been better if I’d have remembered to take the pens out of his room, but too late to fret about that now. I call my husband to come and help by cleaning him up and then set to work trying to clean the walls and wipe clean mattress.

 At about the same time a dawning horror of realisation strikes both my husband and myself. My husband announces it first.

 “It’s not coming off!” he calls out, a note of desperation in his voice.

 “It’s coming off very very slowly on the walls” I reply as I look at the pens, suddenly remembering that they were a recent gift from the lads’ grandad, who does not see them very often and is not fully aware that it is prudent to always buy the super washable pens. The felt pens he got them are not washable. They are far from washable. As ever futile attempts are made to clean up the budding artist, a very incomplete success is made in that some, but by no means all comes off his face and I am forced to accept an uncomfortable fact.

 My son is going to head off to school the next day looking like a smurf. 

 The next day further attempts at cleaning prove futile and I write an apologetic note explaining the blue streaks on his face. Nothing is said about it, possibly because the teacher cannot hold her pen for laughing. Upon his return I run a bath and during it wash his face several more times. This is not easy, since he hates having his face washed and clings to me like a limpet, in a “if I’m going to have my face wet, you can get covered in water as well” type of silent statement. Eventually the pen is mostly removed, the tiny bit remaining will come off in the next day or so.

 He is in a giggly mood, clambering onto my shoulders once he is out and dressed in his pyjamas, pulling on my hair and jumping on the bed and moving my chin up and down, thinking it’s hilarious to see my jaw moving about. After a few minutes of this he decides to tell me something.

 “It not yellow” he announces.

 “Erm, what colour is it?” I reply, wondering what he is talking about.

 “It ‘maller!” he tells me confidently.

 “Ok,” I answer,  looking around the room for inspiration.

 “It bigger!” he shouts out happily, leading me to wonder if he is channelling the spirit of M C Escher.  

 “It not an animal!” he states finally and as I continue to look round the room I spot the Bob the Builder toy that comes complete with a guessing game on it and that his younger brother was playing with earlier. All makes sense now.

 “Go and get a story” I tell him directing him to the bookcase. He knows this part of the bedtime routine very well and returns with an “In the Night Garden Book” an epic tome entitled “Iggle Piggle’s Lost Blanket”. His younger brother wanders over and climbs onto my lap to see the story as well. As they both look I recount the saga of the missing piece of material, with the added anticipation of various flaps being lifted up to reveal other objects and characters. The book is about five pages long with one or two short sentences to each page. Makka Pakka had the blanket in the end.

 “Who had Iggle Piggle’s blanket?” I ask and am answered with a “Who had Iggle Piggle’s blanket?”. Younger brother is lying down, eyes half closed, making little attempt at trying to stay awake. I go for an easier option.

 “Did Makka Pakka or Upsy Daisy have the blanket?” pointing to both characters on the page.

 “Upsy Daisy!” comes the answer.

 I carry him into his bed in what will probably turn out to be a futile attempt at getting him to understand that yes, he really is tired. Honestly.  He looks up at me and gives me a big smile. Then he leans forward and grabs my hair, playing with it once more. He stops and looks fully at me then announces:

 “Give kiss a mummy” and places one on my forehead. I say thank you,  give him a goodnight kiss on his forehead and walk out of the room. The hair pulling, the pen escapades, nothing seems to matter. I’m on the ninth cloud.

Brad Handley Offers Us A Chance To Evaluate

6 Feb

A couple of days ago, Brad Handley wrote a blog entry on Age of Autism called ‘DR. NANCY MINSHEW & ME: WHO’S CRAZY?’.

Let us instead examine Brad’s criteria for deciding on who is crazy and who is not between Dr Minshew and he.

I disagree with almost every single thing you have written or said about autism. Since we both can’t possibly be right, one of us has to be crazy. I’m scared to death it might be me. As a psychiatrist, I thought you could help.

Says Brad to Dr Minshew in an email. He then continues with:

It is maddening for parents like me that our “experts” can’t agree on the most fundamentally important and critical data point in the entire field of autism: is prevalence truly rising or not? This very binary notion impacts everything else. If it’s growing, it’s the environment. If it’s not, it’s genetics. From you perspective, “The increase in number of cases reflects the increase in recognition of verbal children.” I was confounded by this point, because I can’t find a single sentence in the scientific literature to support this. What I do look to is the following:

OK, lets pause. Brad says there’s no scientific literature to support the idea that there isn’t an epidemic. We’ll come back to that. Firstly, however, he cites a few bits and bobs to support his hypothesis that there is.

First off he cites:

[1]Report to the Legislature on the Principle Findings from The Epidemiology of Autism in California: A Comprehensive Pilot Study MIND Institute, UC Davis, Oct 2002.

This is not in the scientific literature. It is not peer reviewed. According to Brad’s own specified criteria of utilising the scientific literature, he cannot cite this document.

The second (and last) paper he cites is:

[2]National Autism Prevalence Trends From United States Special Education Data. Pediatrics, March 2005. Craig J. Newschaffer, PhD..

Using Special Education data has been debunked in a paper published four months after that Newschaffer paper. The author (James Laidler) says:

Many autism advocacy groups use the data collected by the US Department of Education (USDE) to show a rapidly increasing prevalence of autism. Closer examination of these data to follow each birth-year cohort reveals anomalies within the USDE data on autism……These anomalies point to internal problems in the USDE data that make them unsuitable for tracking autism prevalence.

and Shattuck says:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

So thats the sum total of Brad’s ‘science’ regarding the autism epidemic. A non-science report and a twice debunked study.

Is there actually anything in the scientific literature that suggests the ‘epidemic’ is not anything of the sort?

Variation in the administrative prevalence of ASD is associated with education-related spending, which may be associated with better-trained educational staff who can recognize the problem, and more and better trained in-school specialists who can provide screening. It is also associated with the availability of health care resources. Increased access to pediatricians and school-based health centers may lead to improved recognition of ASD. Interstate variability in the identification of ASD should be taken into account when interpreting the results of prevalence studies based on administrative data and the associated system characteristics taken into account by policy makers working to improve the recognition of ASD.

David S. Mandell, ScD; Raymond Palmer, PhD

The incidence of research-identified autism increased in Olmsted County from 1976 to 1997, with the increase occurring among young children after the introduction of broader, more precise diagnostic criteria, increased availability of services, and increased awareness of autism. Although it is possible that unidentified environmental factors have contributed to an increase in autism, the timing of the increase suggests that it may be due to improved awareness, changes in diagnostic criteria, and availability of services, leading to identification of previously unrecognized young children with autism.

William J. Barbaresi, MD; Slavica K. Katusic, MD; Robert C. Colligan, PhD; Amy L. Weaver, MS; Steven J. Jacobsen, MD, PhD

We observed dramatic increases in the prevalence of autism spectrum disorder as a primary special educational disability starting in the 1991-1992 school year, and the trends show no sign of abatement. We found no corresponding decrease in any special educational disability category to suggest diagnostic substitution as an explanation for the autism trends in Minnesota. We could not assess changes in actual disease incidence with these data, but federal and state administrative changes in policy and law favoring better identification and reporting of autism are likely contributing factors to the prevalence increases and may imply that autism spectrum disorder has been underdiagnosed in the past.

James G. Gurney, PhD; Melissa S. Fritz, MPH; Kirsten K. Ness, MPH; Phillip Sievers, MA;Craig J. Newschaffer, PhD; Elsa G. Shapiro, PhD

Brad continues:

You say vaccines are proven to not cause autism and that parents should vaccinate their children.

Dr. Minshew, you are either being intellectually dishonest on this point or it is outside of your expertise as a psychiatrist to understand the vaccine-autism issue, Let me explain:

Brad _seems_ to be basing this belief on the news article he quotes:

Dr. Nancy Minshew, Director of the University of Pittsburgh’s Center for Excellence in Autism Research, says it’s time to end the debate [about vaccines and autism] because research overwhelmingly proves there’s no connection and parents don’t need to worry about that anymore. Minshew says it’s time real experts dispel the rumors for concerned parents. “They deserve to hear the evidence, the real evidence. So I thought, ‘Enough is enough,'” she said. Minshew says people’s lives are at stake because some kids aren’t getting vaccinated for life-threatening diseases due to incorrect information. Since Thimerosal, an ethyl mercury preservative, was banned from most childhood vaccines in the U.S. seven years ago, autism rates have continued to increase – disproving the link. Minshew says it’s only a coincidence that toddlers are vaccinated around the same time autism is usually diagnosed.

Minshew did _not_ say ‘vaccines are proven to not cause autism’, that is what the article she was quoted in says. You can tell the bits she actually said as they will be surrounded with quote marks.

– Thimerosal was not banned from vaccines as you are quoted as saying, so this is a falsehood.

Minshew was not quoted as saying this. This is a falsehood.

– Thimerosal did not come out of vaccines seven years ago as you are quoted as saying, so this is a falsehood. In fact, it’s still in the overwhelming majority of the flu shot supply at full dose- the flu shot was recently added (2004) to the CDC’s recommended schedule.

Once more, Minshew was _not_ quoted as saying thiomersal came out of vaccines seven year ago. This is a falsehood. Your statement that it is still in the overwhelming majority of the flu shot is speculative and without foundation – unless you have something to back that up….?

And in *fact* – although Minshew never claims it, a CDC meeting reported on a study that said:

N.I.P. estimated the amount of thimerosal in provider vaccine inventories in a survey conducted September 20, 2001 to February 20, 2002. The targets were a convenience sample of providers getting site visits from public health officials across the country. Inventory counts were done of all refrigerators for D.T.a.P., Hib, and hep B pediatric vaccines. The thimerosal classification was based on the lot number information, which was verified by the manufacturers. In September 2001, 225 sites were canvassed, and 447 by February 2002…..During the visits, the providers were surveyed about thimerosal-containing vaccines in their inventories. Of the 447 interviews, 83.5 percent reported no thimerosal-containing vaccines in stock at any time since October 2001.

and

in September 2001, only 5.6%1 of all vaccines contained thiomersal. By Feb 2002, only 1.9% of all vaccines contained thiomersal.

(NB: The 5.6% figure seems to be a typo in the report. It should be 56%. From 33,500 doses out of 63,600; to 2,796 doses out of 149,147)

– If you believe that focusing on a single ingredient in vaccines (mercury) exonerates vaccines in totality, that’s an impossibility. We have grown our vaccine schedule from 10 vaccines in the early 1980s to 36 today. Yet, we never test the “combination risk” of so many vaccines. No one, except Generation Rescue, has ever studied unvaccinated children and looked at their autism rates. We never look at the aluminum that replaced thimerosal, the live viruses, or the many other toxic ingredients in vaccines at all.

So, Brad says that its not just mercury. Which is weird because in Feb 2005 (click the first video) he was saying:

What we immediately realised – and I think this is something that is a surprise to lots of people – um that autism is a misdiagnosis for mercury poisoning. If you line up 100 symptoms of mercury poisoning and 100 symptoms of autism they are exactly the same

So, to borrow a phrase, both can’t be true….is it a misdiagnosis for mercury poisoning or is it the combination of vaccines?

– The parent reports of children going upside-down and developing autism right after vaccination continues unabated. Will you ever listen to them?

People such as Minshew have done nothing _but_ listen. Generation Rescue keep promising something for them to listen to but keep failing to provide it.

Brad continues:

It strikes me, and perhaps I’m crazy for saying this, that now that you have publicly reassured parents that vaccines are safe, that you may well be the last person on earth, even in the face of overwhelming evidence, to concede that vaccines are in fact playing a role in autism.

That, my friend, is called ‘projection’. Now you have publicly hemmed and hawed about what vaccines role is in autism and now all your projections and predictions have singularly failed to materialise (read the rest of that blog entry with the video for details), even with an overwhelming lack of any evidence whatsoever you will be the last person to ever admit you were plain old wrong time and time again.

And yet there’s more.

You never mention recovered children.

In all the writings and quotes of yours, Doctor, I didn’t read one thing about children who have recovered from autism. Have you ever met a recovered child? Would you like to? Would you care to scan their brains and see how they look? I heard a noted neurologist mention an idea that we should scan the brains of children newly diagnosed with autism, let their parents who want to treat the children biomedically, and then re-scan the brains of any children who have recovered. Does that strike you as an interesting idea?

Ah, the famous recovered children. I wrote about this awhile ago. The upshot of it is that when actually looks in detail at the kids Generation Rescue claims as recovered, kids who no longer have a diagnosis account for about 5-7% of the total he presents as recovered. Its a con trick. I even managed to get my own daughter listed as a recovery story on his website.

Brad continues:

As a courtesy, I forwarded the above piece to Dr. Minshew one day in advance of posting it on Age of Autism. What follows is a short email exchange between us:

———————

Dr. Minshew:

What’s written below, by me, will be posted at The Age of Autism blog tomorrow. As a courtesy, I’m sending it to you first.

I have no issues with you personally. In fact, reading that you lost a child makes me very, very empathetic.

That said, it is my heartfelt belief that you are actually part of the problem with autism, rather than part of the solution. I’m sure that’s a comment you disagree with profoundly, but I really believe history will be a harsh judge of scientists like you who continue to deny the existence of a rising prevalence of autism and mistakenly reassure parents that vaccines are safe – a topic you can’t possibly be an expert on, by the way.

I also thought your email to Mr. —- reeked of intellectual arrogance in a very close-minded sort of a way. There are many well-credentialed scientists who would take exception to almost everything you believe about autism, but you speak with sweeping generalizations like you are in the only camp that actually knows where truth lies. I also found your continual reference to a court case in Maryland, while 2 tests cases before the Vaccine Court remain WIDE OPEN, to demonstrate either ignorance on your part or a case of selective fact gathering. What if the test cases in D.C. rule in favor of the plaintiffs?

So, I don’t expect us to be pen pals anytime soon, but I’m including the open letter to you below.

Sincerely,

JB Handley

——————–

From: Nancy Minshew
To: J.B. Handley
Sent: Mon Feb 04 11:50:31 2008
Subject: RE: Nancy & Me: Who’s crazy

Mr. Handley none of you have permission to share emails that i have sent to you as individuals with anyone besides the intended receiver nor do you have permission to quote me publicly. Unlike the newspaper which was public, private emails to individuals sent confidentially are not for public quotation.

——————–

From: J.B. Handley
Sent: Monday, February 04, 2008 11:54 AM
To: Nancy Minshew
Subject: Re: Nancy & Me: Who’s crazy

Says who?

And, tough shit.

J.B. Handley

——————–

Nice guy huh?

And also further example of Brad’s hypocrisy. Our very first online set-to Brad commented (in the comment section) about me publishing part of an email he sent me:

Mr. Leitch sent me an email on my private email account, I responded, and he put my comments on his blog without asking me.

Which wasn’t strictly true but anyway – if I’d known how Brad would chop and change his mind I would’ve just said ‘tough shit’.

Anyway, Brad concludes:

This is my world, Dr. Minshew, it seems clear as day. It’s so different from yours, I really, really need to know: which one of us is crazy?

Lets recap. In Brad’s world science isn’t science unless he says it is. He can chop and change his mind without it invalidating his earlier, contradictory beliefs and its OK to be a massive hypocrite. Are these the actions of a crazy man?

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