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Plaatsvervangende schaamte

2 Jul

<blockquote>McCarthy gave a popular voice to a viewpoint that had largely been rejected by mainstream institutions – that the sharp increase in autism in recent years has an environmental cause, such as toxins in childhood vaccines.</blockquote>

<blockquote>”Jenny McCarthy is the biggest thing to happen since the word autism was coined,” says Dan Olmsted, editor of the blog Age of Autism, which attracts thousands of readers a day</blockquote>

<blockquote>Because Ackerman got McCarthy involved, Olmsted says, that view is “not out on the loony fringes any longer.”</blockquote>

Source

“Plaatsvervangende schaamte” is a Dutch phrase. In his 2003 novel ‘Helloland’, Nick Walker defines it as:

<blockquote>This means a shame in humanity. A shame in being human. You see someone acting  foolishly or stupidly and you do not laugh at him, you do not feel Schadenfreude, instead you feel a sense of humiliation  that this is how your species can behave.</blockquote>

There’s nothing else I can really add to this post, sorry.

Dear Mercury and MMR Militia

21 Jun

I want to write you all an open letter to offer you my opinion as to where you are going wrong. Before I do, I fully realise that this is a massive generalisation and that some of you won’t hold all the opinions I’m about to go through. I think though, that many of you do.

Three things prompted this open letter. First of all was David Kirby’s trip to the UK. Second was a comment from Kelli Ann Davies where she expressed surprise that some of us might know/guess/whatever the intentions of the science and medical community. Third was Ginger Taylor’s recent sulk about the AAP. I’ll touch on these things as I go through this.

You have a truly massive credibility issue which grows with every passing year. Once upon a time it was an issue with the science/medical community but now it is an issue with the general public. There are a number of reasons why this is so.

1) You cannot keep your story straight. You have (as I said to Kelli Anne) some first class marketing and PR people. As I recall, Lynn Redwood, Mark Blaxill and Sallie Bernard all have marketing qualifications. You also have numerous leading lights who are very, very rich. This means you have ample opportunity to lever your message into the heart of the US media system.

But that means nothing without a coherent story to sell. You don’t have one. I understand that you have recently talked about how the ‘story of vaccines’ has _evolved_ . That is stretching things more than a little. Its mercury, no its MMR, no its both, no its Aluminium, no its all three, no its all ingredients, no its the very vaccines themselves, no its the schedule they’re given. No – its ALL the above. And don’t forget the mitochondria!

The more ingredients you add to the pot, the more you have to explain why they are causative of autism. You didn’t even manage to do this when you were concentrating on just _one_ thing (thiomersal). The above is not an example of an evolving hypothesis. Its an example of an ever widening hypothesis as one after another, your original ideas have been taken down.

Nowhere is this better illustrated than David Kirby’s stumbling backwards and backwards:

In 2005, David said in a FAIR Autism Media interview:

It’s now 2005…..[W]e should see fewer cases entering the system [cdds] this year than we did last year.

When that didn’t happen he then said:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis…..total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

That didn’t happen either.

You started off by pointing an air pistol at a target 20 feet away and missing. You worked your way through Magnums, Shotguns and Miniguns and kept missing. You currently have a canon wheeled right up to within a foot of the target and you’re _still_ missing.

2) Your science is weak and getting weaker. Sadly for you, the onus was (and still is) on you to provide evidence that vaccines in any of the myriad of hypotheses cause autism. Lets hypothetically agree with you that vaccines are in fact, fashioned by Satan and are in fact, tools of population control. That is not the point. The point is: _do they cause autism?_

There is not one paper that passes muster as valid science that offers corroborating evidence that any vaccine, any ingredient of vaccines or any schedule they are administered in causes autism. This is after over 10 years of trying to find one. What you are increasingly left with is a double conspiracy theory. In one barrel of the conspiracy theory, brave maverick doctors are having their research suppressed. In the other barrel of the conspiracy theory, Big Pharma shills are publishing science to refute the various vaccine hypotheses.

Of course, neither barrel is true. The brave maverick docs are not having their science suppressed. It is simply not good enough to pass peer review.

A good example of this is the science experts being presented at the Omnibus Autism proceedings. No Geier’s. No Jim Adams. No Boyd Haley. No Andrew Wakefield. At least, not so far anyway. And this is in the Vaccine Court, where standards of evidence are way lower than in a civil court, where – by the way – not a few of these same researchers science was not good enough to even be entered as evidence.

And you have this nasty habit of shooting yourselves in the foot. Only today David Kirby posted on the Huffington Post about how rubbish the VSD database was. The very same database the Geier’s recently used to allege a link between vaccines and neurodevelopmental disorders.

And the list goes on. The Hornig study? Refuted by Rick Rollens MIND Institute. The Nataf paper on Porphyrins? Liz Mumper, head of DAN! medical admits that even ‘normal’ children have raised Porphyrin levels. The Bernard et al paper? Refuted. Richard Deth’s work? Exposed and questioned.

3) Your choice of media people to represent you is doing you harm. I am not sure how the idea of latching onto Jenny McCarthy as a spokesperson for the anti-vaccine/autism connection came up. There are a few other celebs I can think of with more gravitas than McCarthy. In truth, you couldn’t have chosen worse. Already, she has made a public fool of herself (and you). As has her partner, Jim Carrey, with his ‘lazy ass’ FUBAR and calls to notice ‘warnings from the universe‘.

I understand that these events feel terribly cathartic to you but I would urge you to take off your rose tinted glasses and see how the real world perceives these kind of things. Its not good. Don’t take my word for it, go to a _mainstream_ news source, discount the people you know as friends/associates who are leaving comments and then see what people think.

You have also latched onto the words of Bernadine Healy. I can see why but she (is/was) a member of a paid lobby group that advances the ‘science’ of Philip Morris to put forward the idea passive smoking isn’t dangerous. How desperate do you have to be to turn to _this_ ‘authority’ for backup?

4) You cannot see that you are being humoured. I know that some of you have been very proud of your success in getting involved with things like the IACC and y’know, thats great – well done to you. And then there’s the ‘coup’ of getting the AAP to attend a DAN! conference and ‘work with’ them. But there’s one thing you seem to have forgotten. AAP members are medical scientists. They will go with the decent science.

I read a blog post from Ginger Taylor today which seemed to be telling the AAP their ‘window of opportunity’ to work with DAN! et al had closed due to the fact they endorsed a letter that a paediatrician had written on how to tackle parents who were nervous about vaccination.

Amusingly, Taylor also chided the AAP for not turning up to the ‘green our vaccines’ rally:

I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn’t show up for us in some respect.

Well the AAP didn’t show up for the rally and well… this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.

Can you not understand that to expect the AAP will turn up for a rally which touts such anti-science as Aluminium and Formaldehyde being at singularly dangerous levels in vaccines and Anti-Freeze being in them at all is the height of arrogant stupidity? Surely you cannot be that naive?

The truth is – and I get this from speaking to AAP, NIH, FDA and NHS members – that you had, and always will have, an opportunity to impress them with decent, peer reviewed science. That’s all you’ve ever needed. And that’s what you’ve never had.

5) The future. The person you’ve decided will be your public face is writing another book. <a href="http://stopthinkautism.blogspot.com/2008/06/today-autism-recovery-tomorrow-crystals.html"She says that:

It’s really an Indigo book…….We’re definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen.

And what’s your role in this?

…But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I’m just like, I’m really following source, kind of I felt the need to do that, I’m just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality.”

That’s where you’re going. You’re close to abandoning any kind of rational basis for your beliefs and just becoming Jenny’s followers in an Indigo Spiritual Awakening to herald in the New Earth..

How many autistic amish?

3 Jun

Yesterday, Joseph wrote a great post that looked at the prevalence of low functioning autism amongst the Amish and found it correlated strongly with non Amish sources.

Today, I want to look at the Amish through the lens of the ‘new’ prevalence that The Autism Omnibus Petitioners expert witness (for the families) Professor Sander Greenland testified to.

Now, as we all know, when Dan Olmsted first started writing about the Amish he claimed that both Amish children are never vaccinated and that the Amish either don’t have autism, or it is very rare.

It has been established since than that Omsted’s ‘reporting’ (which constituted asking a water cooler salesman) somehow missed the fact that the Amish actually do vaccinate in pretty high numbers.

Since that time, as the autism/vaccine hypothesis has become weaker and weaker we have seen a ‘silent switch’ amongst its proponents. Gone is the talk about ‘epidemic’ and hundred of thousands of children ‘poisoned’ to be replaced with talk such as:

My message is this: “We need more research to determine if a small subset of kids is genetically susceptible to lifelong neurological injury from something, or things, in our current vaccine program.

This has been echoed by Dan Olmsted. When Autism News Beat stepped into woo-land and visited Autism One, Dan Olmsted was quoted on camera as saying (this is a hurried transcription, apologies for slight errors):

…you try to listen for anything that’s useful in terms of information. Sometimes they tell you things that they don’t mean to in terms of how..uh..you know we learned things about the Amish from a blogger who tried to destroy my reporting about that because he basically talked to somebody who confirmed that there were very few cases of classic, regressive autism. So…it’s, you know…that’s the way it is…

So, we can see that the ‘silent shift’ is underway. Nobody acknowledges it but the media people amongst the autism/vaccine believers have switched their stance. Now we’re only looking for a small subset of regressive cases.

This was born out by the families expert witness Professor Greenland. He was asked to tackle the epidemiology for autism and stated that the number of kids made autistic by vaccines (assuming it had happened at all) was so small it could not be detected by epidemiology. He contended that it was in fact a subset of a subset he called ‘clearly regressive autism’.

Using his data, we could see that ‘clearly regressive autism’ accounts for 0.015% of a given population. According to Elizabethtown College the Amish population of the US is about 220,000.

So, in real terms we are looking for (0.015% of 220,000) 33 ‘clearly regressive autistic’ people.

According to Mark Blaxill, Olmsted has already found:

….less than 20 cases

Which is good news. It means he must already be over halfway in finding all the ‘clearly regressive autistic’ people he needs to in order to establish the Amish have the same rate of ‘clearly regressive autism’ as the rest of us.

The Amish Anomaly is an anomaly in one respect only – it is anomalous to keep silently shifting the numbers you want to find. Now that David Kirby, Dan Olmsted and the Autism Omnibus families are all on record as only looking for a ‘small subset’ isn’t it time that the Amish Anomaly was seen for what it is – anomalous.

Laura Hewitson’s Stinker

18 May

Sorry about the title, I couldn’t find a word to rhyme with her last name to infer wrong-doing a la Age of Autism’s ‘Grinker’s Stinker. Anyway….

Meet Laura Hewitson. Laura is the lead and joint author of a trio of papers presented at this years IMFAR as posters.

These papers (also shredded by Orac) purport to show how it is possible to mimic the 1999 US vaccine schedule and give monkeys autism as a reult. Never mind the fact that the results reported don’t sound or present anything like autism (<em>”survival reflexes, tests of color discrimination and reversal, and learning sets”</em> huh??), lets look at Laura Hewitson a bit more closely then I managed to in a quick 10 min post last time.

As I mentioned at the time, Laura Hewitson claims affiliation with DAN! Thats enough in my book to place a rather large red flag against her impartiality.

Now I’ve learnt that her entanglement with the vaccine/autism hypotheses goes very much further than that.

It turns out that Hewitson’s partner is Dan Hollenbeck, an Age of Autism contributor. Hollenbeck owns the website FightingAutism.org and in the top right hand corner of the FightingAutism website are the words:

FightingAutism is now part of Thoughtful House Center for Children.

And we all know who is the big cheese at THoughtful House don’t we? That’s right – one Andrew Wakefield. He’s also the co-author to the three studies poster presented at IMFAR.

Hollenbeck’s asociation with Thoughtful House goes beyond just having a website affiliated with them however. He’s also an employee of Thoughtful House.

Director of Information Technology for Thoughtful House, Dan Hollenbeck received his Bachelor of Science degree in Electrical and Computer Engineering from the University of Wisconsin-Madison in 1992

….

When their son was diagnosed with autism in 2001, the Hollenbecks relocated from Oregon to Pittsburgh in order to accept employment as an Information Technology Manager for a large NIH (National Institutes of Health)-funded medical research organization

….

He is also on the Board of Directors, as well as the Research Committee, for SafeMinds…

So, here we are with three poster presentations from a woman who has an autistic son, affiliated with DAN!, is married to the Thoughtful House IT guy (who also happens to be on the Board of Directors of SafeMinds) and these afore-mentioned poster presentations are also co-authored by Andrew Wakefield.

I wonder just how impartial this science can be?

How about when we throw one more fact into the equation?

437. Laura Hewiston (sic) and Dan Hollenbeck on behalf of Joshua Hollenbeck, Dallas, Texas, Court of Federal Claims Number 03-1166V

That’s right. Hewitson and Hollenbeck are suing HHS for vaccine injury visited upon their son Joshua.

Now, lets turn our attention to IMFAR where Hewitson made her three poster presentations. INSAR have regulations governing the papers and abstracts submitted.

INSAR requires authors to disclose their sources of contributed support (commercial, public, or private foundation grants, and off-label use of drugs, if any). INSAR also requires authors to signify whether there may be a real or perceived conflict of interest. Any potential for financial gain that may be derived from reported work may constitute a potential conflict of interest.”

Now, maybe Hewitson did note the fact that:

a) Her husband is an employee of an organisation that makes money from treating what they allege is vaccine caused autism.

b) She has an autistic child.

c) Said child has been registered for compensation for alleged vaccine damage resulting in autism (I assume they’re part of the Omnibus proceedings then?)

But if she did, then it isn’t recorded in the abstracts posted on the Age of Autism website.

Monkeying Around

16 May

Its IMFAR time again and over on Age of Autism (thanks to Kelli Ann Davies for this priceless hat tip) they’re getting all het-up:

SICK MONKEYS: RESEARCH LINKS VACCINE LOAD, AUTISM SIGNS
The first research project to examine effects of the total vaccine load received by children in the 1990s has found autism-like signs and symptoms in infant monkeys vaccinated the same way. The study’s principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic “certain neurological abnormalities of autism.”

Autism signs? Not just ‘autism? Research hasn’t linked vaccine load to autism?

I’d love to tell you more about this (and the other two accompanying studies on the same subject) but I can’t. Why? Well, because they’re not actually _studies_ as such. They’re poster presentations.

So, what’s a poster presentation? Well, its exactly what it sounds like – its a researcher, making a poster of their research and standing beside it for an hour, hoping other people find it enough of interest to look at. A few popular ones are sometimes asked to be presented orally. There are usually at least a hundred different poster presentations at a conference. It mostly depends on teh size of the conference hall.

Age of Autism’s Dan Olmsted says:

Poster presentations must go through a form of peer review before they are presented at the conference; the papers have not yet appeared in a scientific journal.

One of those two statements is true. The other is sadly not. Here are ‘the rules’ for poster presentations at IMFAR 2008.

Posterboards will have a display area 194cm wide X 84cm high. We suggest that you produce posters in A0 landscape format (120cm wide X 84cm high). Posters will be fixed to boards using sticky-back Velcro that will be supplied on site. Poster Numbers 1-60 will be located in the Champagne Terrace room, and Numbers 61-120 will be located in the Bordeaux room. In the programme a time is allocated for each poster presenter to be standing by their poster.

The page goes on to provide some helpful tips such as: ‘Less is more’ (probably no worries on that score) and ‘Use an appropriate font’. Hopefully, the team will have taken onboard the services a real typography expert such as Dr Paul King of CoMeD.

So – I can tell you next to nothing about these poster presentations. The good folk at AoA seemed oddly reluctant to link through to the abstracts.

However, I can tell you a little about the authors. The primary author seems to be Laura Hewiston of Pittsburgh University. She is registered on that page as a DAN! Doctor. She (I think its the same person) also appears here (see 953) and here.

Also listed as an author according to AoA is one AJ Wakefield. Enough said about that!

Lastly, is Steve Walker who did a poster presentation at an IMFAR in the past (can’t recall which one) which also appeared to offer support for the MMR hypothesis. Oddly, that poster presentation never made it into any kind of peer reviewed journal.

Best comment on Age of Autism comes courtesy of David Ayoub who begins with:

someone slap me!

I tell you, if that man didn’t exist, someone would have to invent him.

Presto Chango

12 May

Now, there’s nothing wrong with making a mistake. Nothing at all. People make mistakes all the time – as I saw on the back of a window cleaners van the other day – ‘guano happens’.

For a trivial mistake (spelling etc) its easy to change things on a blog. I can simply edit and re-save the post. I don’t need to tell anyone my Bluto sized fingers have typed ‘teh’ instead of ‘the’ again. I can just change it and republish.

However, sometimes, you make a mistake that is rather more important. A mistake that changes the factual interpretation _and_ the tone of a post. These should be altered _and_ a little note be made close to the alteration to point out the error and the fact its fixed. Trying to get away with making such large scale errors and hoping no one notices is bad form.

If one is a journalist – a professional writer – you would expect the notification as a matter of course. Don’t journalists pride themselves on their accuracy and attention to detail?

So it was something of a surprise to see that the article Sullivan discussed written by David Kirby had undergone a mysterious and totally unremarked upon alteration.

This (click for larger image and then use your browsers ‘back’ button to return here after viewing) is the original post David made on the Huffington Post. The page was recovered from Google Cache. As you can see, this contains the erroneous ‘34,000’ figure and all that flows from it. The maths error that Sullivan noted.

However, visiting the Huffington Post post today reveals the following:

.

(Again, click for bigger).

As we can see, the post has undergone very significant change of a key part of important factual information. With no (that I can see) notification that the data has been altered. I took a screen shot of the entire page as of 09:43 on Mon 12th May 2008 and couldn’t see such a notification. Maybe someone else can see one?

Tut tut.

However, even more curiously, the same article David posted at the Age of Autism blog still contains the error.

(Again, click for bigger).

Why? Are AoA readers less interested in facts? Is David too busy packing for his trip over here in June (which I am _very_ much looking forward to by the way)?

Adults, Autism and Scotland

10 May

I have been thinking recently how nice it is that the online autism community has moved on from the quarterly analyses of the CDDS data. For those who are blissfully unaware–the California Department of Developmental Services (CDDS) publishes statistics on the people it serves. They do this every three months.

These data are a favorite of people who would like to promote the idea of an autism ‘epidemic’. Mr. David Kirby has a book and enough power point slides for three debates which are filled with (mis)interpretations of these data.

For the past year or so, every three months the CDDS publishes the data followed by people stating, “The CDDS autism count has gone up, this proves there is an epidemic” and “the CDDS autism count has gone down, this proves the epidemic”. Both seemingly contradictory statements being made on the same dataset. These were quickly followed by multiple bloggers pointing out that the interpretations made were incorrect.

Three things happened that made for a break. (1) Mr. Kirby declared that he was moving on from autism, (2) the CDDS is on a break while they rework the way they compile the data and (3) A case was conceded in the Autism Omnibus which shifted the debate (and ended item (1)).

I was very happy to see the CDDS phase of the autism discussion end.

Then, much to my dismay, the same arguments started up again. This time it is data from Scotland, not the CDDS being misused. Otherwise, it is the same old arguments and the same bad analyses. Well…almost. Some new bad analyses have been added.

Mr. Kirby has a discussion of the Scottish data on another blog. Let’s avoid the conceptual mistakes (such as assuming that somehow everyone is properly identified and receiving services). Before we get to the real implications of this, let’s take a break and look at the math errors, shall we?

Mr Kirby takes this graph of data from the Scottish report:

And states:

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.

Based on this, he has determined that if the true incidence of autism is constant, about 1 in 110 of the adults are missing from the count.

OK, go back and click on that image for me. I know you skipped over it, but, go take a look at the bigger version.

Did you see it? Yep, the number is not 34,000, but 3,400 adults with autism in the Scottish survey. A factor of 10. Don’t worry if you missed it. Mr Kirby (who spent some time ‘analyzing’ the data) and at least 20 people who responded to his post missed it too.

At this point, I can hear the screams of “So what, that’s just a small mistake. You are trying to distract us all from the big picture.” Because, in the end, even though Mr. Kirby is off by a factor of 10 and there aren’t 100 times more kids than adults receiving services with an autism label in Scotland, there is a roughly factor of 10 difference in the administrative prevalence of autism.

A factor of 10 is still big. I’d argue it’s huge. In fact, I’d scream right back at the people who are trying to use this for political gain.We can argue back and forth whether it’s real. But, consider some of the possibilities for the Scottish survey:

  1. the numbers are correct, all autistics are correctly counted.
  2. People are getting appropriate services, but some are under the wrong label (e.g. intellectual disability).
  3. Some people are getting the wrong services because of an incorrect label (e.g. schizophrenia).
  4. People who really should be getting services and supports are not getting any.

Let’s face it, if there’s a chance that people are getting the wrong services, we should be looking. And, yes, it is a very real possibility. Remember the big stink some people made when it was implied that some adults with the label of Schizophrenia might actually be autistic? Well, David Mandell is scheduled to talk about this at IMFAR this year in his paper: Evidence of autism in a psychiatrically hospitalized sample.

A £500,000 project to look for adults with Autism in the UK has been recently announced. To quote one of the researchers on this project:

“Adults with autism and Asperger’s syndrome are too often abandoned by services with their families left to struggle alone. Equally, people are frequently missaprorpriately referred to either mental health or learning disability services

“This study will inform the development of a national strategy designed to ensure that adults with autism and Asperger’s syndrome are supported to have full lives.”

“We still don’t know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families. One of the key gaps in our knowledge is simple – we don’t know how many people have the condition in any given area. That is why I am ordering a study to address this. “

It sounds like a really tough project. I don’t know if this study can really be accomplished. But, I have hopes that it could help improve the lives of adult autistics.

Now, as long as we brought up the Scottish survey, why not look at some of the details that were missed by others?

One question was how many of the individuals had “other behavioural or biomedical conditions?”. For the adults, this was 30% of the total. For the children, this was 3% of the total. Is this an indication that the kids being identified today actually have less severe symptoms than the adults? Even without that, only 1% have “other…biomedical conditions”?!? Where are all the kids with all the conditions like bowel problems that some groups claim define autism?

Another interesting fact from the survey is that over 50% of the children are in mainstream schools.

Yet another factoid: about 32% of the children in the survey have Asperger syndrome. Of those, half are listed as having ‘no learning disabilities’. For adults, only 14% are listed as having Asperger syndrome.

Surveys of those getting services are prone to a lot of errors–as has been discussed in the past for the CDDS data many times. So, these data should not be taken as hard epidemiological counts of the actual number of people in Scotland with autism. However, these data do not support the idea that the younger generation of autistics have greater challenges than the adults had to overcome.

I am actually glad that the subject came up of autism in Scotland. Why? Because in looking for some of these data, I found the website for the National Autistic Society Scotland. I particularly liked this page: I Exist: the message from adults with autism in Scotland.

For me, I have just finished a box of McVitie’s HobNobs while writing this. I don’t know if they are Scottish, but I love them. Perhaps I’ll open the other box to celebrate a study of adults with autism.

Additional

Sullivan’s catch of David’s maths error is good but I thought to myself as soon as I heard about this Scottish report that I’d heard about it before. I had. I blogged on this audit three years ago. One of the most fascinating aspects of the paper was when local authorities were asked for their opinions on the following question:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

The answers were very interesting. About 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. For example:

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS

…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. The two really stand out quotes for me were:

There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability……day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

So as well as the excellent points Sullivan raised, I’d also like to ask how it is possible to place any kind of interpretation of the data when the fact that adult prevalence is grossly under-reported is so well established?

Age of Autism Excels Itself

4 May

It’s my opinion that the blog Age of Autism has not ever once published a post that has contributed anything to the sum of human knowledge in a general sense, nor has it ever published a post that is designed to actually help autistic people live their lives.

However, every once in awhile, it publishes a post that is so monumentally stupid that I literally think the worse of myself for wasting time reading it. And here I am actually blogging about one. Sigh.

Such a post appeared today. It is entitled ‘CDC triggers measles outbreak’. The author of this post, ex-UPI journo Dan Olmsted says:

I’m starting to think we should rename the CDC the Centers for Disease Contagion. You’ve all seen the news that there are suddenly more measles cases in the United States and the CDC is blaming it in part on the increasing reluctance of parents to vaccinate their kids.

But it’s the CDC’s fault, and no other. Getting the “measles shot” means getting the MMR, and the MMR is “the autism shot” in the minds of many, many parents.

So, let me get this straight. It is the CDC’s fault that measles is making a return across the US? I see.

Its not, for example, the fault of the non-vaccinating upper-middle class soccer-mommies and daddies, for example:

Of the 64 people infected by the measles virus, only 1 had documentation of prior vaccination. Among the other 63 case-patients were 14 infants who were too young to be vaccinated. Many of the cases among US children occurred in children whose parents claimed exemption from vaccination due to religious or personal beliefs, or in children too young to be vaccinated.

Hell, no. _That_ couldn’t be the issue, right? Its obviously the CDC’s fault. Damn them for providing the vaccines and a schedule that has led to serious measles epidemics being held at bay in the US and the UK prior to the last 10 years of utter complacency and idiocy.

And why is Dan Olmsted happy to blame the CDC?

Let me tell you one reason why I’m not shy or circumspect about squarely blaming the CDC for this — because Jon Poling, Hannah’s dad, predicted something like this, or much worse, just a few week ago

And as we all know:

Dr, Poling is the real deal, educated at Johns Hopkins, devoted both to his daughter and his patients, tempered by reality. He’s mild-mannered. He’s mainstream. He’s credible.

Riiiiight. This is the same Jon Poling who was recently described by his co-authors as ‘muddying the waters’. The same Jon Poling who’s wife has been a subscriber to the vaccine hypothesis since at least 2001. The same Jon Poling who knowingly uses incorrect epidemiology.

I’m afraid that Jon Poling is right now in the process of extricating himself from the mainstream. And also from any concept of credibility. His refusal to approve access to information that would provide more accuracy to public statements members of his clique have made about the situation is testament to a man who is not governed by any reality other than a desire to push a pre-conceived agenda.

But really, the attempt to point the finger elsewhere by Dan Olmsted is nothing more than a childish ‘It wasn’t me! Its not my fault!’ when both logic and morality show quite clearly that if people decide to eschew something that might not only save their kids lives but the lives and/or well-being of the society in which they live then the finger of responsibility can only point in one direction.

Kirby continues to get basic maths wrong

23 Mar

As I’ve pointed out, Kirby has messed up his maths on the Huffington post blog. He’s now done much the same in an Atlanta Journal-Constitution article (clearly, their Editor does not check for mathematical errors, or general stupid). Kirby’s article is titled “Give us answers on vaccines”: I don’t expect any answers from Kirby, but correct sums would be a start.

Kirby argues that:

Most striking is how typical Hannah’s cellular dysfunction [mitochondrial disorder] may be among children with autism. While extremely rare in the general population, at two per 10,000 people, it seems unusually common in autism — with estimates up to 2,000 per 10,000.

To go over these figures again – a 2,000 per 10,000 incidence of mitochondrial disorder among people with ASDs is and incidence of 1/5. If 1/5 people with an ASD has mitochondrial disorder, and only 2/10,000 people have mitochondrial order, then if everyone with mitochondrial disorder has an ASD only 1/1,000 people would have an ASD. Clearly, not everyone with mitochondrial disorder has an ASD, so the actual incidence that Kirby is estimating would be considerably lower.

Age of Autism linked the blog post on Kirby’s article, and there are (at time of writing) over 170 comments. Oddly, though, it seems that no-one has picked up on Kirby’s basic error. Haven’t they noticed their hero’s issues with maths? Or don’t they care?

Reality Bites Back

22 Mar

So many times I have heard it said by the anti-vaxx/autism believers how they are ‘the mainstream voice’ – *the* autism community.

Today, they got a bit of a reality check.

The New York Times discussed an NYT article in which parents who refuse to vaccinate their kids say:

I refuse to sacrifice my children for the greater good,” said Sybil Carlson, whose 6-year-old son goes to school with several of the children hit by the measles outbreak here………….Ms. Carlson said she understood what was at stake. “I cannot deny that my child can put someone else at risk,” she said.

This piece was written in the wake of a measles outbreak in San Diego:

In a highly unusual outbreak of measles here last month, 12 children fell ill; nine of them had not been inoculated against the virus because their parents objected, and the other three were too young to receive vaccines.

These are the same people who claim that measles is a ‘nothing’ disease – that they had it as kids and it never did them any harm. An argument that reminds me of the one elderly smokers wheel out that they smoked every day of their lives and it never did them any harm as they cough what remains of their lungs up and continue infecting the air with second hand smoke.

Lets be honest here. What these people are doing is very much akin to selfish smokers. They’re wandering up to you and effectively pissing in your face.

Here’s an article from Jan last year in New Scientist.

Deaths have fallen from 873,000 during 1999 to 345,000 by the end of 2005,” said WHO director-general Margaret Chan, on Thursday. “This is a 60% reduction.” And the news is even better in Africa, Chan said. “Deaths there declined by 75%, so Africa is leading the way.”

Measles deaths in children under five fell from 791,000 to 311,000 over the same period, globally.

The new figures estimate that, altogether, measles vaccinations have prevented 7.5 million deaths between 1999 and 2005, and 2.3 million of these were attributable to the intensified programme.

In 2005, 345,000 people *died* from measles. This is down from 873,000 people who *died* from this ‘nothing’ disease that never does anybody any harm. Are people really so purposefully stupid?

And what helped achieve this 60% drop in *deaths* – was it Jenny McCarthy doing chat shows? Was it a whole bunch of people deliberately misrepresenting what happened to a nine year old girl?

No. It was *vaccines* .

Anyway….

In the NYT thread, several stalwart commenter’s from the Age of Autism blog have turned up trying to make their points. The replies to them/before them/after them quite nicely demonstrate how isolated from the mainstream they actually are and how well informed the average person on the street has become both about the need for vaccines and about these people in particular. I do worry that they might start seeing every parent of an autistic child as an anti-vaxx loon but on the positive side, it has shown up very, very publicly how small the autism/anti-vaxx group actually is numerically as well as how little the average person believes them.

By the way, I am well aware that there is another discussion going on in another US papers comments section but I will not link to that as it contains comments about an individual that I want to distance myself from totally and will deny any knowledge of or participation in. Please do not allude to, link to or name either this individual or the newspaper in question.

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