Autism Blog - Autism Insights, another journal for questionable autism research?

30 Jan 2010

Author: Sullivan
Comments: 88

Autism Insights, another journal for questionable autism research?

The double standards applied by the autism alternative medicine community never cease to amaze me. Typically they do a game of “six degrees of separation” with any one they disagree with. Do you have ties to anyone who has worked on vaccines? Do you have ties to anyone who knows anyone who might have worked with a governmental agency? Well, if so, anything you say is ignored as biased.

Funny that no one took a good look at the Journal that the recent “confirmation” of Dr. Wakefield’s research was published in. The alt-med community doesn’t question research they like.

Confused? Here’s the back story. A recent article was published Clinical presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic spectrum Disorder and Chronic Gastrointestinal symptoms in a journal called “Autism Insights”. The paper came out the day before the decision from the GMC on Dr. Wakefield. The paper was touted as “Wakefield’s Science Proven Valid Again In New Study That Replicates Findings” in a blog post (guess where?)

Have you ever heard of “Autism Insights“? Neither had I. Don’t feel bad. Unless you read one of the two other articles published in that “journal”, you couldn’t have heard of it.

Yes, two other articles. One is an editorial.

This new article brings the total published in “Autism Insights” to 3.

The first:

Trends in Developmental, Behavioral and Somatic Factors by Diagnostic Sub-group in Pervasive Developmental Disorders: A Follow-up Analysis
Authors: Paul Whiteley, Lynda Todd, Kalliopi Dodou and Paul Shattock

Then an editorial:

Autism Etiology: Genes and the Environment
Authors: A.J. Russo

and now

Clinical Presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic Spectrum Disorder and Chronic Gastrointestinal Symptoms
Authors: Arthur Krigsman, Marvin Boris, Alan Goldblatt and Carol Stott

Yep, that’s it. The entire production of “Autism Insights” is two papers and one editorial.

So far, every paper has had an author on the journal’s editorial board.

Take a look at the Editorial Board. This paper, timed to come out exactly when Dr. Wakefield needed good press has no fewer than four people from Dr. Wakefield’s own clinic, ThoughtfulHouse.

Bryan Jepson, MD
Director of Medical Services, Medical Center at Thoughtful House Center for Children, Austin, TX, USA

Arthur Krigsman, MD
Director of Gastrointestinal Services, Pediatric Gastroenterology, Thoughtful House Cener for Children, Austin, TX, USA

Carol Mary Stott, PhD
Senior Research Associate, Research Department, Thoughtful House, Austin, TX, USA

Andrew Wakefield, MBBS, FRCS, FRCPath
Research Director, THoughtful House Centre for Children, Austin, TX, USA

There are prominent DAN doctors, Richard Deth, and others from the alt-med community on the editorial board as well.

Come on guys. Is this really the standard of science that is acceptable to support Dr. Wakefield?

As an aside, a year or so back I emailed some friends with a speculation that the alt-med community would create their own journal. As far as predictions go, this wasn’t really a longshot. Still, it is interesting to see the prediction come true.

As to the paper itself? I’ll only say a few brief words as it really isn’t worth the time.

1) I recall in the Omnibus hearings that many of the GI “findings” claimed by the petitioners were found to be misinterpretations by the experts who reviewed them

2) No one has ever said that autistic kids are somehow immune from GI complaints, including inflammation.

3) There are multiple details where, even if correct, this research is very dissimilar from that of Dr. Wakefield’s original Lancet paper and later work.

It is too bad that these researchers chose to make clinical findings into what amounts to a political statement of support for Dr. Wakefield. If there is any valuable information gained from these children, I don’t see how this paper respects their contribution.

edit to add: I forgot to acknowledge that this post came from a tip from Prometheus at the Photon in the Darkness blog.

Link to this post?

If you want to reference this post in your site, use the code below to link to me from your website.

<a href="http://leftbrainrightbrain.co.uk/2010/01/autism-insights-another-journal-for-questionable-autism-research/">Autism Insights, another journal for questionable autism research?</a>

Comments

88 Responses to “Autism Insights, another journal for questionable autism research?”

KWombles
January 30th, 2010
01:15:37

You’re leaving out the best part, the part where they had to pay $1699 to submit the paper. Yup, you got it. Oh, and the two peer editors would have been folks who agreed to read it so they could get a discount on their next submissions. Uh-huh.
Emily
January 30th, 2010
01:20:05

And I thought Medical Veritas or whatever it is was squirrelly. Well, it is. And so is this. Logrolling is conduct unbecoming to science.
Sullivan
January 30th, 2010
01:46:14

KWombles,

the $1699 fee is for most journals (see this page) by this “publisher”. However, “Autism Insights” advertises a $495 processing fee.

A fee to make an article “open access” is common, though.
Sullivan
January 30th, 2010
01:47:22

Emily,

yeah, “Medical Veritas” has a new competitor for questionable research.
passionlessDrone
January 30th, 2010
07:01:22

Hi Sullivan –
Very nicely done. That is pathetic.

– pD
Laurent
January 30th, 2010
11:22:32

Money and hope exploitation is a basic scheme in the autism field.
Laurentius Rex
January 30th, 2010
12:30:32

That is the problem with pseudoscience, they aspire to something they are not by aping the “trappings” of validity.

Like the counterfeit kit car version of the Ferrari, looks like it on the outside but inside any old engine will do.

It doesn’t convince those who have knowlege but it does fool the average Joe Public.

This is more than praise by imitation though, it is conscious dishonesty bordering on fraud, these unscrupulous people know what they are doing, and the scandal is why can’t they put all that intelligence to good use instead?

In the academic scheme of things, that ranks even lower than publication in a popular autism magazine such as NAS communication, which in the struggle to appear fair, will let in all manner of stuff for balance, which it really ought not to, because the weight of what they use for balance in reality carries very little and by publishing gives it the appearance of carrying more.
silkysienna
January 30th, 2010
23:24:22

Who the fuck ARE you,man? And why do you hate those who are actualy trying to do something about people suffering RIGHT NOW, this very moment, with active and intense childhood autism, or the extended adult version, as I MYSELF HAVE you big asswipe! You people keep fighting the simplicity of what might be known as COMMON KNOWLEDGE if you would just back off and get the hell out of our Way! The worst of my condition in childhood was constant burning acid stomach, a head that often felt like it needed to explode,hence, regular head banging, and a self-limited diet, with the resulting anorexic appetite. As an adult, just this past summer, I had all the GI tests, and ya know what? AUTISTIC GASTROENTERITIS- as Wakefields team is calling it; bowel and lower intestinal inflmation, acid reflux and esophegeal erosion. Classic autism results, I’d say. Life long. I am 48 years old now, and refuse to abide by you negative naysayers who block the flow of progres in this obscenely protected field of disease. I also got the results of a tongue biopsy only weeks back, and gee- didn’t they find the toxic, fungal or mycelial form of Candida there? As it has been living this way inside of me my whole life. Go to my blog at wordpress.com and complain about my test results and pursuits at a more peceful life existence there. Thats right, this is SILKY SIENNA, not a porn star, author of autismrox.wordpress.com. Come and see me anytime, you assholes!
Brian Deer
January 31st, 2010
14:52:01

This is what Merck did in Australia: set up a sham journal to get sly, otherwise unpublishable, junk into citations. It’s a standard drug industry scam.

In due course, Age of Autism and all the other cranksites will no doubt be replete with references to this “journal”. The average person – or indeed busy doctors – will almost never check back to see what’s really going on.

Is there no end to this thing?
Kev
January 31st, 2010
15:15:17

How ironic that they should stoop to mimic the bad behaviour of a vaccine maker.
Broken Link
January 31st, 2010
15:37:46

Silky Sienna, nice language you use. Very persuasive. Very civilized.

If you are 48 years old, it seems unlikely that you even received the MMR vaccine. It was only licensed in the US in 1971, when you were 9 years old.

No one ever said that people with autism could not have gastroenteritis. Just like no one ever said they could not get cancer, or any other disease. It’s a good thing that your gastroenteritis is being treated appropriately after all these years. But what does that have to do with Wakefield?
Laurentius Rex
January 31st, 2010
15:47:30
Well Brian me old pal, me old beauty, fancy you not knowing a solution to that one?

Tis memetics innit? what one needs to launch is a sufficiently well distributed counter meme, that is to say something of sufficient quality and academic content that does the rounds debunking this practice (it has to be said that Dr Susan Blackmore has been accused of pseudo science with the notion of ‘memetics’, but it does work, it’s called viral marketing)

Until such time as it becomes either unprofitable or unsustainable to secure financial advantage through such frauds as are being perpetrated by Wakefield and his colleauges it will continue, because just like all the saps buying viagra over the internet, there is one born every minute.

In reality the public has to be educated to know the difference between a fake paper and a genuine one.

Even the Sunday Times doesn’t know that yet, which isn’t surprising when you consider who the proprietor is.

Laurentius Rex FRCmem* )
- – FRCmem = fellow of the royal college of memetics :)
Laurentius Rex
January 31st, 2010
15:56:09

As a fifty something year old I suffer from Gastric reflux, and irritable bowel syndrome too, hardly rare amongst people of my age and beyond, I have no more reason to consider them as part of my autism than my arthritis is.

One thing is for sure, Wakefield is the last person I would ever consider being referred to as a consultant, there are proper Dr’s out there believe it or not.
Laurentius Rex
January 31st, 2010
15:59:10

And to add to the last post, I certainly have never had the MMR jab, if I had I would certainly have cause to complain being as I have had Measles, Mumps and Rubella all in there time and it wouldn’t have been doing it’s job would it.
Anthony Cox
January 31st, 2010
22:09:38

JPANDS not good enough for them eh?
dr treg
February 1st, 2010
01:10:47

There is no doubt that scientists remain intrigued regarding the association between autism and
1. Structural changes in neurons.
2. Immunologic abnormalities in the brain, blood and gut.
3. Environmental immunogens.
Indeed immune abnormalities of the gut are well-recognised in gastric reflux and irritable bowel syndrome.
There is an increasing realisation that most diseases of “unknown” causation appear to be characterised by an abnormal immunogenic response i.e. to an immunogen or auto-immunogen.

Although many people want a piece of Dr Wakefield his interesting approach to gut abnormalities in autism sparked off by an idea that an immunogen such as MMR could cause such abnormalities would have seemed justified for further research at the time. Unforunately he did not go through the usual ethical committee hoops perhaps through arrogance, sheer enthusiasm or fear of rejection.

Dr Ben Goldacre (Bad Science) wrote a sensible analysis of the whole journalistic fiasco called “Never mind the facts” which is perhaps more balanced than the more emotiomal articles which are frequently associated with autism.
http://www.badscience.net/2003.....the-facts/

Perhaps the Shylocks will only be content when Dr Wakefield is imprisoned and struck off. However if he were imprisoned he would be a burden on tax-payer`s money for cost of imprisonment i.e. £ 30,000 per year and the anticipated long-term mental instabilty resulting in social security payments.

Good luck with the calling for the disintegration of a human being process L Rex as well as the destruction of a human being. Nice comparison of the doctor to Al Capone.

I hopr I never get in your black-book.
Tweets that mention Autism Blog - Autism Insights, another journal for questionable autism research? « Left Brain/Right Brain -- Topsy.com
February 1st, 2010
01:53:46

[...] This post was mentioned on Twitter by Kev, Jane Fleming, Squillo, autism_hub, Catherina Becker and others. Catherina Becker said: RT @kevleitch Autism Blog – Autism Insights, another journal for questionable autism research? « Left Brain/Right Brain http://ow.ly/1nO61M [...]
daedalus2u
February 1st, 2010
19:20:52

Paying £30,000 per year to keep Wakefield from doing any more mischief would be well worth it. He has caused many millions of damage and the anti-vaccine hysteria he instigated has killed people. £30,000 per year would be cheap to put him where he could do no more harm.

Dr Treg, the article you link to was written December 11, 2003. More facts have come out since. Facts which Wakefield had all along, but which he lied about. He never found measles virus in the gut, and he knew it. His student Nick Chadwick showed that all the positives were false positives.

It wasn’t arrogance or enthusiasm that lead Wakefield to lie, it was a disregard for the truth and a lack of concern for who might be hurt by his lies.
Tom
February 1st, 2010
19:48:46

Treg: “Although many people want a piece of Dr Wakefield his interesting approach to gut abnormalities in autism sparked off by an idea that an immunogen such as MMR could cause such abnormalities would have seemed justified for further research at the time.”

Wakefield’s interesting approach? The guy took money from lawyers to create phoney research results for lawsuits.
dr treg
February 1st, 2010
19:49:25

You seem to miss the point – Dr Wakefield was not alone in the fiasco – the journalists were important in creating the anti-vaccine hysteria. Read Dr Goldacre`s recent article.
http://www.badscience.net/2010.....r-verdict/
Tom – or Tommy baby? since you are into changing names – nicely taken out of context. Are you a journalist?
Laurentius Rex
February 1st, 2010
20:16:52

Dr Treg

I replied to your comment some moments ago here http://leftbrainrightbrain.co......ment-75206

Tom, you quite ably point out that it is not only the GMC who need to clean out the Augean Stables but the legal profession as well.

We have already seen how the likes of Shoemaker operate. Here in Blighty it would seem there are also unscrupulous ambulance chasers with an eye to the main chance who will stoop at nothing.

Brian, me old pal me old beauty, do you fancy a bit of investigation into there trade? or won’t Rupe let you?

A bit of muckraking and a complaint or too to the Law Society would not go amiss.

Any legal journo’s here up for it?

(apostrophes are legal in contractions, pandas or no pandae)
Tom
February 1st, 2010
21:53:22

Tom – or Tommy baby? since you are into changing names – nicely taken out of context. Are you a journalist?

I haven’t made it a habit of changing my name and have never gone by Tommy baby. I’m in medical research. Your claim that Wakefield was pursuing a novel hypothesis is ludicrous.
David N. Brown
February 1st, 2010
22:56:52

I nominate lawyer Jim Moody for attention, for his press releases defending Wakefield and libelling Michael Rutter.
Laurentius Rex
February 1st, 2010
23:14:47

I have ‘libelled’ Michael Rutter myself, and called him what he is to his face, he is not guiltless at all, in the social construction of autism as something it manifestly is not, he is part of the machine that perverts research, in his case so all the more guilty for having this false aurra of authority about him which does not stand up to much critical analysis when you see the memetic disease he has succumbed to.

Not a mighty tree at all but one with rather insubstantial roots.
RAJ
February 2nd, 2010
06:06:29

Heres another journal of dubious integrity ‘Molecular Autism’

http://www.molecularautism.com/

The European editor is Simon Baron-Cohen and the US editor is Joseph Buxbaum of Mt. Sinai medical school in New York.

The editorial board is a who’s who of those who even Rutter described as ‘genetic evangelists’.

So who is the US editor of this Journal, Joseph Buxbaum? He published one study in 2001 that claimed he identified a region on chromosome 2 as a candidate ‘autism’ gene’.

http://www.ncbi.nlm.nih.gov/pubmed/11353400?

Buxbaum has taken out a patent for the SLC25A12 gene on chromosome 2 as a candidate autism gene and is offering kits (for a price) as a test for autism risk:

http://www.freshpatents.com/Me.....248956.php

The claim has not been replicated:

http://www.ncbi.nlm.nih.gov/pubmed/19913066?

http://www.ncbi.nlm.nih.gov/pubmed/16648338?

Despite having recruited thousand of multi incidence families in the US and Europe, no gene specific to autism has ever been identified.

Lots of leads but the failure to replicate and in a handful of cases the genes are associated with genetic syndromes that may have a superficial association with autism, but are not considered ‘true’ autism.

http://www.ncbi.nlm.nih.gov/pubmed/19708861?

There are cases of Angelman Syndrome that have been identified in the AGRE data set and many members of the editorial board are also members of the Autism Genetic Consortium.

The Angelman Syndrome Foundation is a collaboration between families and, clinicians and researchers devoted to Angelman Syndrome and on their website state unequivically that Angleman Syndrome is often misdiagnosed as cerebral palsy or autism:

http://www.angelman.org/stay-informed/

Should a pregnant woman agree to take a prenatal test for Buxbaum’s genetic test? Would anyone subject their family to such a test?
David N. Brown
February 2nd, 2010
07:47:29

Laurentius,
What Moody and Wakefield are saying about Rutter is that he is a “paid expert witness for the vaccine industry”. I can prove this is false. I certainly would not lump criticism of Rutter’s published work together with this false and “ad hominem” claim.
Laurentius Rex
February 2nd, 2010
10:16:18

Well I will admit that is a bit rich coming from the Wakers crew, who incidentally put a great deal of money into keeping big Pharma afloat to the extent I wonder where they would get there nostrums from if there were no big Pharma.

I don’t think I would pay Rutter to be an expert witness not unless I wanted yesterday’s news.

My principal beef with Rutter is that he is old school, indeed I think that is what I called him, in that he was one of the originals who on this side of the pond considered autism to be childhood psychosis. Ok, I cannot condemn people for what they used to think, when there was not the current state of knowledge, but I do question the degree to which Rutter is capable of being open to new ideas particularly when he is so dogmatic that ASD is a male thing and using a rather unsupportable argument to defend it, namely that in all the experiments the ratio of boys to girls hold true. That no doubt can be explained by the fact that the experiments have that ratio because that is the result of diagnostic bias not necessarily a natural ratio, much in the same way that it certainly appeared to be the case that 75% of the autistic population were retarded at one time (a figure I suspect Rutter has used somewhere along the line but I would have to check) however the recognition of autism in a larger segment of the population has since tended towards the reversal of that speculative (it was never validated) figure therefore if it existed at all it was simply a diagnostic artefact.

I would have more respect for die hards like Rutter if they went back to school and learnt a little more about how to interpret research, I would guess there wasn’t a lot of formal research training when his contemporaries started on there careers and hence they make so many basic mistakes in there methodologies and statistical interpretations.
laurentius rex
February 2nd, 2010
10:57:36

Well one thing everybody is forgetting in this, you would expect people who have a similar outlook to flock together and be on the same boards and directorates, there is nothing sinister in that.

I would not expect Wakers to be on a respectable board, he would flock with like minders on a disreputatable one.

Let me make it clear, whilst I question the research of Rutter, Baron Cohen and there ilk, I do not think they are corrupt researchers merely mistaken ones, led astray by there own zeal. Wakefield has been shown to be something more than this, whether he started out with an excess of zeal he certainly moved from keeping respectable company to keeping bad company.

If we consider the progress of research to be taking place on a very broad highway we will see many wandering all over it, sometimes being in the wrong lane for the traffic, and even turning off the odd slip road now and then, but they are all indisputably travelling in the direction of the destination.

The pseudo scientists however have turned of the path long ago, and are not just travelling in the wilderness they are travelling backwards.

In terms of intellectual credibility Rutter and co still have a lot more than those who flock together out of desperation because there is no room for them in the mainstream, it is not comparing like with like, these disagreements between bona fide autism researchers and anti vax ambulance chasers have never been on an equal basis, the sheer weight of evidence is in favour of the former, there is no question of the featherweight of woo providing a balance, it should be dismissed, as indeed it is in courts of law where the weight of evidence is considered.
Laurentius Rex
February 2nd, 2010
11:13:48

Furthermore it is quite clear that everyone who comes to these “bar room” debates comes from a position of Bias with something to prove.

I don’t know exactly where Mr Jennings is coming from, and sometimes I even agree with him regarding the relative lack of evidence for a simple genetic explanation, but I am sure that Dr Treg is coming from a fringe medicine perspective.

It does not really do, to demonize your enemy though it is certainly fun to pillory them in a satircal manner from time to time, that has been going on since the time of Aristophanes.

I do think Wakefield is a thoroughly bad man not because I don’t like what he does, but because of the evidence, whereas I think for instance Paul Shattock is merely barking up the wrong creek, however on balance is a good man.

My Bias in this is simply stated in the phrase

“Nothing about us without us” I do have an investment in all the theries as one way or another it effects the outcome of my life whether through the treatment I am offered or Government Policy.

I would not want any association to be made between any gut problems I have or do suffer from, to be made with autism, Autism is what I am, whereas a gut problem is something that requires the appropriate treatment, diet without a doubt being implicated though not through the mechanisms proposed by the gfcf brigade.
Tom
February 2nd, 2010
17:05:53

RAJ, your deceptions, cherry picking and character assassination grew weary long ago.

Buxbaum and Rutter are co-authors on three papers investigating genetic risk of autism. I doubt Michael Rutter would demean his collaborator, especially given that Rutter is obviously focused on autism genetics.

Moreover, if you bothered to look at Buxbaum’s work, you’d see papers investigating environmental risk factors. Do you really believe that accomplished scientists like Buxbaum deny the role of environment? You fail to appreciate the simple fact that you have to find genes and investigate the effect of environment on their expression.

There are four studies on SLC25A 12. Two found association and the other two didn’t. If you read the Rabionet paper, which failed to find an association, you’ll see the authors don’t rule out the possibility that the gene may still be associated. Funny that you left all these details out.

It’s common place for investigators and institutions to patent research results. Buxbaum’s patent would be used as part of a larger panel of tests for autism risk genes packaged on a chip. The type of test that Buxbaum has patented would help clarify the diagnosis of Angelmann. So what’s your point?

Lastly, you persist with the lie that there has never been a gene found for autism. Take a look here: http://gene.sfari.org/ From an evolutionary perspective, common risk loci for autism would have been eliminated a long time ago and so it is likely that autism arises from many different rare and spontaneous alterations that may quickly disappear from the population. It’s a moving target of copy number variations, chromosomal abnormalities, variable expression, modifying genes, X inactivation, and epigenetic factors (environment) that make autism genetics incredibly complex. And despite this complexity, investigators are making real progress

So RAJ, either you lack the expertise to understand the field or you are an “environmental evangelist” who purposely misrepresents findings. Neither scenario is very helpful in portraying science.
David N. Brown
February 2nd, 2010
21:57:09

Laurentius, Thanks for clarifying where you disagree with Rutter. The issue of gender is problematic: On one hand, autistic women have clearly been undercounted. On the other hand, it is at least plausible that autism is more common among males. The same pattern is well-known for genetically based disorders, such as color-blindness, hemophilia and Tourettes’ syndrome. I think the additional problems you raise reflect flaws in the system: In particular, seniority may count for more than up-to-date training, and those in higher positions may be distracted from reviewing newer literature by other duties.
I think we can agree that, whatever his virtues or faults, Rutter does not deserve to be a subject of false allegations. A bit of an update: AoA actually allowed comments I sent correcting claims about Rutter online,possibly because I mentioned sending Rutter the suggestion that he consider a lawsuit.
Joseph
February 2nd, 2010
22:24:00

FWIW, I believe (at the very least) familial autism has a male-female ratio closer to 1:1. There’s some data that points in this direction.
Prometheus
February 2nd, 2010
23:19:39

RAJ claims:

“Despite having recruited thousand of multi incidence families in the US and Europe, no gene specific to autism has ever been identified.”

This is only true if it is changed to read:

“...no single gene specific to all cases of autism has ever been identified”

In fact, a number of genes have been identified that are strongly associated with specific multi-incidence lineages. However, since there appear to be over twenty genes that can cause autism, it is not surprising that when you look at dozens or hundreds of multi-incidence families, you don’t find one consistent gene.

Several studies have shown that non-familial autism is associated with copy-number variatiations in the genome that are not found in the parents or non-autistic siblings, so de novo (newly arising) mutations may be the most common cause. This makes sense, since most autism is not familial.

Prometheus
Laurentius Rex
February 2nd, 2010
23:39:45

Prometheus I appreciate that you mean well, however your statements are probably guided by the same blinkers that RAJ wears namely that you have already chosen which side of a particular fence you are on, which in essence is my criticism of most of the science.

The problem with your statement is the unsupported declaration that “most autism is not familial”

That falls into exactly the same trap as the one time assertion that most autistic individuals were intellectually retarded in that it is impossible to make such a statement without a more consistant and thorough epidemiology than has yet been accomplished anywhere.

Never mind that, there is, despite whatever the outcome of the DSM deliberations may be no consistant or convincing description of what autism is, you cannot argue from X, Y or Z model of autism what the genes are, you will get inconsistant answers.

I still wait to see the brains unfolding thoroughly mapped from the genes outward, then we will see just how many phenotypes are possible, and why so many of them appear on the surface to be the same thing.

I think the answer to that is squarely located in mathematical modelling of what is possible given the raw materials and processes of the brains development, which of course does not happen in a vacuum.

I am essentially capable of looking at autism from a cultural, and epistemological viewpoint beyond the confines of genetic science, or immunology, or whatever perspective the various disputants put on it. If you step up from the narrow ledge you are on overlooking the canyon of your specialty and climb higher up the mountain, the view broadens, and you can see into the other valleys beyond, then your canyon becomes part of a much wider and more coherent pattern.

You see why the science reasons as it does and why the arguments persist because you are only dealing with parts of the elephant.
Prometheus
February 3rd, 2010
00:10:41

Laurentius Rex,

The statement “most autism is not familial” is actually supported by the literature. However, if you want to argue the point, then perhaps you could provide me with some data to support your position. I am quite willing to change my mind, as I have no preconceived notions about what autism is or how it is enumerated. Your perception that I have “...already chosen which side of a particular fence [I am] on…” is correct only to the extent I am (or strive to be) on the same side of the fence the data is on.

I have, as you might have guessed, relied on the currently available strategies for identifying and diagnosing autism, but I don’t see any scientifically viable alternative. Yes, the definition of what is “autism” and what is not is arbitrary to a large degree, but any other “line” would be equally arbitrary without the benefit of being generally accepted.

As for the non-familial nature of most autism, I base that on repeated findings that most people with autism don’t have parents or siblings with diagnosed autism. I can speculate about the “sub-clinical” autism that might exist in their family tree – the “odd” uncle or the “distant” father – but that would be pointless, since I could also “imagine” that their undiagnosed family members are entirely neurotypical without fear of contradiction – in the absence of data.

I’m not a philosopher, I’m a scientist. I deal with data, not “what if”. While I might occasionally muse and ponder the imponderable with close friends after work, I don’t try to pretend that any of it is real until I have the data to support it.

While I agree that a more detailed epidemiologic evaluation might show autism to be more familial than not, that’s not what the available data show. If you want to argue about my perception or concept of autism, I suggest you first find out what it is, rather than assuming you know what I’m thinking. If you want to argue the data, I suggest you bring some.

Prometheus
Laurentius Rex
February 3rd, 2010
00:25:22

There you go again “The literature”

What I am saying is that the literature is necessarily incomplete because of the thoroughgoing need for some decent epidemiology, and I am not talking the speculative statistical kind I am talking about some proper root and branch sociological search for autistic people living in there natural environment. Old fashioned demographics.

Here in the UK they made a start, but it is very early days yet.

If I were you I would be a lot more sceptical, you begin to sound like a fundementalist in your blessed assurance.

Do you where scientific methodology originates, in philosophy in logic, and in the art of the possible.

Well step back two hundred years and you could say that there was no autism, why? because it is not in the literature, it’s just the same argument in reverse that is all. I’m not arguing that, but when others do, how do you defend against it then?

I think there are some questions that are simply being asked prematurely, the groundwork has not been properly done. Autism is just too narrow a focus, we only have autism because of a particular historical progression within the medical elite, had the profession developed differently we might have rather different and equally questionable syndromes looking for an answer.
RAJ
February 3rd, 2010
04:55:21

Prometheus;

There is a fundamental design flaw in the AGRE (US) and IMGSAC (Europe) data sets which have recruited thousands of families with two or more members meeting diagnostic criteria for an ASD using the ‘Gold Standard’ diagnostic tools ARI and ADOS-G which are based on DSM-IV criteria.

The only exclusionary criteria is Fragile X. Neither of these data sets records the presence of mental retardation using Wechsler intelligence scales which DSM-IV recognizes as the ‘Gold Standard’ for diagnosing degree of mental retardation (profound, severe, moderate, mild)

IQ scores are unavailable therefore any genetic variant found in the datasets can simply not distuinguish a candidate autism gene from a candidate mental retardation gene given that neurologically impaired groups have a high rate of social and communication disorders, including adult stroke patients who as a group have been found to have significant social impairment and communication disorders.

http://www.ncbi.nlm.nih.gov/pubmed/11796956?

A few genetic variants found in AGRE and IMGSAC invariably have also been reported in mental retardation studies. There are a number of genetic syndromes found in the AGRE dataset including Downs Syndrome an Angelmans Syndrome.

I have explained how the Angelmans Syndrome Foundation has stated unequivically that Angelmans Syndrome is often misdiagnosed as cerebral palsy or autism.

Another example is AGRE subjects who have a genetic variant in the region of chromosome 16P11.2. The Boston childrens hospital claimed that 1% of all autism is associated with genetic variants in chromosome 16p11.2.

Researchers in mental retardation have reported the same genetic mutation in mental retardation:

http://www.ncbi.nlm.nih.gov/pubmed/20093387?

Since the AGRE data does not record IQ it is impossible to know if the gene is associated with ‘autism’ or with mental retardation with autistic features.

Itis regrettable that the AGRE design failed to control for mental retardation and is unable to distuinguish mental retardation from autism. This is not a new problem, Moss and Howlin recently also found that the association between genetic syndromes is superficial.

http://www.ncbi.nlm.nih.gov/pubmed/19708861?

Kanner himself noted this dilemma in 1965:

“While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic”.
Laurentius Rex
February 3rd, 2010
08:22:31

I can see two men at the far ends of a football field looking out across the field, both seeing a different game because they are too stubborn to turn there heads and see into the middle of the field.

As I have said before RAJ sometimes has a point, and also Prometheus sometimes fails to see one.

One really does need to be less dogmatic about autism, if I can do it, never mind the investment that I have in the lable turning out to hold true, then why can’t this quarrelsome pair?

Of course Kanner was not right about Autism when he wrote in 1965, he was writing at a point in time even further from whatever turns out to be the truth eventually, which is not helped by the way in which research into Autism and mental illness has actually proceeded in the years since, which has tended to solidify the divides rather than look at how different developmental trajectories end in people being given diagnoses from the mush that is DSMIV and which DSMV probably doesn’t have the political guts to sort out other than partially.

Autism is not unitary, that is not to say that there is some validity and stability in the co-occurence of certain core traits of which profound sensory and perceptual difference are one which has been largely ignored giving an inevitably false picture.

Promethius with his trust in data, is looking at inclusive, incomplete and often flawed data.

RAJ sees that as an excuse to throw out the whole concept of any genetic link.

However whichever way you look at it, the way in which the research has selected it’s subjects, has inevitably biased what can be seen. I put the problem in one of my analogies to Gillberg and the other member of a panel at a conference years ago, to my surprise Gillberg got it, why doesn’t anyone else?

Promethius, if you want a thoroughly worked up academic defensible thesis of what I am trying to put in what is after all still a virtual bar room argument, you will have to wait, but it will be forthcoming.
Tisah Tucknott
February 3rd, 2010
17:02:58

If any of you are interested in having children better understand medical conditions such as autism, look up medikidz.com. The company is dedicated to helping young kids, through comics, and educating them about all sorts of health conditions in their language and at their level. Also online is a social networking site for kids to discuss certain conditions and bond with other children. There’s nothing really out there that can compare to this fab company.
RPClarke
August 14th, 2010
10:19:10

Laurentius Rex February 2nd, 2010 11:13:48
Furthermore it is quite clear that everyone who comes to these “bar room” debates comes from a position of Bias with something to prove.

Is there any peer-reviewed, published in a non-pseudo journal, evidence to justify this confidence that this is “quite clear”?
Laurentius Rex
August 14th, 2010
12:03:00

“is there any peer-reviewed, published in a non-pseudo journal, evidence to justify this confidence that this is “quite clear”?”

Oh dear, either you have come into the bar wearing blinkers or you are just looking through steamy windows, I am surprised you cannot see for yourself that the comments section of a blog is rather like a public bar, open to all, regardless of qualification and somewhere where whatever profession one might have, one has taken off the overall, or the white coat or whatever, to indulge in a bit of speculative conversation in ones leisure time.

Anway whilst I have been away at Autscape, being happilly autistic
and putting up with gluten free diets which put my intestines into rebellion for the real thing, I have seen the announcement of what might turn out to be an interesting piece of research from Declan Murphy, although I suspect even he does not claim it’s universality because of the demographic profiles of the subjects.

So far as I can figure it consists of minute computed differences in what are speculatively posited by symptom, to be autistic “brains”

It’s more or less what I have been saying, that there are multiple differences at really low threshold levels which cumulatively produce autism by means of “chaotic” (in the mathematical sense) processes.

Of course with 20 subjects the external validity is going to be very suspect for some time and I would be a fool if I jumped on one piece of research to justify what I think. However I think it is what one might put in the category of “promising” in that it would be interesting next to start mapping those brain changes to genetics, and I am willing to bet it’s complex.

Of course it could all end up an artefact of the computer resolution of the scanning, and that is what other teams need to check, they need to set out in true popperian fashion to refute Murphy’s hypothesis in order to see if it is worthy or not.

Certainly it would have a bearing on my own research in some way as I would be interested more, when I am back from my vacation as it were, how many of these changes relate to visual and sensory processes.
RPClarke
August 14th, 2010
16:52:19

Hmm, Laurentius, I didn’t quite catch whether that was a “yes” or a “no”.
The MRI diagnosis study has been quite well discussed at the Guardian, firstly at
http://www.guardian.co.uk/scie.....brain-scan
and then at
http://www.guardian.co.uk/scie.....statistics
Interesting but having entailed yet more media hypeing by whoever.
Tammy Swarek
October 7th, 2010
16:41:58

Hahaha Exactly how are some of the ego’s on here possibly going to survive when they find out that the world, in deed, is not FLAT
Kev
October 7th, 2010
16:53:03

Errr….
Sullivan
October 7th, 2010
17:21:13

My guess is that they will publish their books anyway. (oops, I am predicting the recent past)
RPClarke
October 7th, 2010
18:07:37

But how recent is “recent past”?
Offit’s False Arguments was published 2 yrs ago.
Sullivan
October 7th, 2010
18:43:30

Ah, we are into the “I know you are, but what am I?” mode.

I’ll drop the jokes. Recent books like “The Age of Autism” and “Callous Disregard” are just plain wrong. If you are of the opinion that those are well researched and quality resources, you are certainly welcome to your opinion. Mr. Blaxill and Mr. Olmsted have ignored a mountain of evidence in order to promote an old, tired, and discredited idea. Mr. Wakefield wants to repair his image, but decided to do so in a book rather than defend himself in hearing. He was rightly stripped of his registration for multiple ethical lapses.

The “journal” mentioned in this post is a waste of electrons. It is an online journal to give yet another outlet for people like Wakefield to get their papers in front of the public.
RPClarke
October 7th, 2010
19:03:00

Ok, Sullivan, I appreciate that was a bit close to the edge (whichever edge that may be).
However, there are more positions in the autism debate(/dispute?) than there are groups publishing books about it. Those two recent books do indeed have a lot wrong with them. But so do the supposedly heroic Offit and Michael Fitzpatrick.

As for that journal, indeed it might be a waste of electrons. But this whole business of markers of “authority” is often mere human make-believe. Groups of self-serving yes-men agree to join up in mutual back-scratching cartels. They call their groups “universities” and “prestigious journals” and hey-presto, the onlooking true believers bow down before their revelations of ultimate truth.

But now a high proportion of autism parents (75% recently suggested) have lost faith in the high priests and resorted to the “quack” treatments. They sense a debasement of the currency of scientific expertise and I don’t think they’re wrong.
Tammy Swarek
October 7th, 2010
21:41:21

Here, here gentleman. Lay down the cap guns, I can smell the burnt paper from our hospital room in Houston! I admit I have my share of research to catch up on, however, my perfectly happy Autistic son and I have been held captive since July 2nd over these controversies. Waking up one morning with projectile vomiting, dangerously elevated ICP which has led to Papilledema, seizures and pain in his head that drove him to tear his face in half. Now “in the box” medicine suggested Matthew was only beating his head one day out of the blue AND vomiting all across my new hardwood floor, because he was Autistic. I knew my son was sick. Trying to find a Dr. that would jump in the middle of this web of medical mayhem and madness was next to impossible. Accomplishing that, we found his issues, which are undeniable. All other treatments having been attempted to lower the pressure, we tried out these theories. After three months we had normal opening pressure.

So, as I listen to what all of you are saying, and picture ego filled heads swelling, I have to ask, is ignorance bliss here? You all seem to be entertaining yourself with the sacrifices that the knowledgeable are making. It is a witch-hunt that you are in deed taking part in. If it was a treatment for Aids we would not be having this discussion.

Matthew, having spent his 13th birthday in the hospital, is not only responding to such therapies with his stabilizing ICP, has also made some rather remarkable improvements overall. Now I do not know what to attribute that to, treatment, the fevers, the unknown, but, we all agree that it is a neuro-immunologic issue.

And by the way guys…I have Lupus so they’re not too far off, if any.
Sullivan
October 7th, 2010
21:53:29

Tammy Swarek,

I wish your son well. I would suggest that any doctor who thinks that vomiting is a sign of autism should be replaced. My own suggestion would be to find another real doctor, and not someone in alternative medicine. Especially with such a serious situation.

If you wish to defend Mr. Wakefield I guess I would ask, in what way has anything he has done helped your son? I don’t recall him ever discussing inter-cranial pressure.
Tammy Swarek
October 7th, 2010
22:13:27

Sulli, my sweet friend, we have been surrounded by “real” doctors. Like I said, we have been IN the hospital in Houston for over 90 days now with Matthew responding in the complete opposite way he should in every course of treatment they have offered him. So much so that the neurosurgeon refused to shunt him. As he so eloquently put it, “I won’t shunt that boy, I work a lot with vets, we wouldn’t shunt a dog, dogs caint talk, Matthew’s kinda like that. What happens if sumthin goes wrong?” Keep in mind, I have him at one of the best hospitals in the US supposedly.

Between the ones that just back out on him from ignorance or policy, we did find one that came up with an IViG/Steriod combination. No one said anything…until it workerd…twice.
Tammy Swarek
October 7th, 2010
22:26:12

Dr Krigsman has been Matthew’s doctor for 5 years now. I had no idea the velocity the hammer head holds that bangs away at those guys every day, until now. Even with the bullets flying overhead at them (The old Thoughtful House gang) came to his rescue with suggestions that they thought would work. Convincing anyone why they should work, was almost impossible. But, they did. When you know your child’s life and eyesight is on the line, and your options are narrowing, what would you do? Mainstream Doctors are still telling me this is part of his Autism, but, Autism isn’t supposed to be a “MEDICAL” condition…right guys???
Sullivan
October 7th, 2010
23:15:55

Tammy Swarek,

I wish you and your child well. I am fortunate that I could chose Dr. Krigsman and his former employer, Thoughtful House should I chose do so. I have not. I have not chosen any of his colleagues either. I will not. As a GI doc, and apparently not the physician treating this current battle (unless Dr. Krigsman has changed into a neurosurgeon and moved to Houston), I don’t exactly know why you brought him up.

Again, I wish you and your son well.
RPClarke
October 7th, 2010
23:28:43

Tammy, some unsolicited advice. 1. Next time build a proper house rather than one of those cardboard McAmerican things. 2. Don’t site it where a tornado is going to come along. Anyway, hopefully your cows have all come home now!

I was reading the other day about that serious problem of dumbo doctors assuming that if there’s an autism diagnosis that there can’t also be some illness such as fever. Quite how these jokers get into med school beats me.
Chris
October 8th, 2010
04:00:59

Mr. Clarke, looking at your blog, I sincerely doubt you understand anything you read.
RPClarke
October 8th, 2010
04:13:59

looking at your blog, I sincerely doubt you understand anything you read.

But you are unable to show any evidence of this lack of understanding? Strange that others don’t share your doubt.
RPClarke
October 8th, 2010
04:27:57

The entire production of “Autism Insights” is two papers and one editorial.

Would you be happier with a journal churning them out on a sausage-machine?
Chris
October 8th, 2010
04:56:00

Your lack of reading ability is evident when you totally miss that “Autism Insights” is a vanity journal, where the editorial board also includes the authors. The only thing someone on the editorial board should be writing are opinion pieces, they should not be refereeing their own papers. Or using their papers to drum up business for their clinic.

Mr. Clarke, where in Dr. Offit’s books does he even mention neurons? There is exactly one instance of the word “neuron” and it is quote from Kinsbourne. You also have very little understanding of how DNA works. Also it is not just Dr. Offit who thinks chelation is worthless for autism.

And Rimland is not exactly considered credible.

You are just an armchair prognosticator with a whacked out theory, and a couple polite responses from psychologists who know very little about biochemistry. Go away until you can find a real biochemist to show that DNA can be changed with the minuscule amount of mercury that used to be in vaccines.
Sullivan
October 8th, 2010
05:10:34

RPCLarke,

others are being polite.
Tammy Swarek
October 8th, 2010
05:16:05

Clarke – Wow, I see you flexing your “google” muscle! What a wonderful person you are to make light of such a devastating event that left so many fellow Americans homeless. I applaud you.

Sulli – It’s been proposed that my son’s bowel issues (which have been a violent 5 year battle for him) and his new pseudotumor cerebri, are systemically linked. The first csf sample showed a permeability in his blood brain barrier aligning his symptoms/causes with Dr Singh’s theories. And it has caused quite the stir, which I never intended on joining. This experience has changed the way I view medicine completely. I don’t know when the majority lost sight of why they went into their fields. But, it seems now the broken little bodies are overshadowed by the corporations and hospital contracts, that’s just a three month long observation.

Every now and then we get a “Maverick” or two. Without them…where would we be? Where would my son be? He wouldn’t have made it to 9. I can not say I understand it all…yet… ;) but I’m picking it up quickly.
Chris
October 8th, 2010
06:11:42

Sully, when I saw Mr. Clarke’s remark I found no reason to pull punches. What he said was beyond the pale.

Ms. Swarek, there is no way I could ever know what you have experienced. I may not agree with you about the science, but I think you have had more than enough to deal with (yes, I also googled… saw the pictures and my heart broke). You do not need Internet strangers second guessing your choices.

My best wishes to you and your family.
Sullivan
October 8th, 2010
06:28:39

Chris,

my comment wasn’t a statement that your comment was not polite. Just a response to “Strange that others don’t share your doubt.” He doesn’t know whether others doubt him or not. Sometimes when someone is so far from being correct, many people just don’t see the point in correcting him.

As to Tammy Swarek, I don’t know what google turned up, but I tend to agree with you Chris. I seriously hope that whatever team she has at hand has the right answers and fast. People, especially kids, belong at home, not in hospitals.
RPClarke
October 8th, 2010
09:57:28

First I reply to Tammy – Of course I appreciate you’ve done an amazing job of coping with that disaster (though you’ve obviously had the huge advantages of not being destitute or disabled). But I also noticed your first comment about egos, indicating an, ooh, ever-so-slightly cheeky Schadenfreude sense of humor,

Hahaha Exactly how are some of the ego’s on here possibly going to survive when they find out that the world, indeed, is not FLAT

and so I was sure you’re a big enough ego yourself to take my silly humor in return without being upset. And I think you’ll agree those other personal circumstances deserved some recognition here! I myself don’t care for Schadenfreude humor but each to his own.

Meanwhile some others here have a problem with me challenging their beliefs about autism and in consequence they have to do the traditional thing of “blame the messenger” and so imagine
unfriendly inappropriate attitude where it does not really exist.

Now I reply to the reply from Chris “not pulling his punches”.

Your lack of reading ability is evident when you totally miss that “Autism Insights” is a vanity journal, where the editorial board also includes the authors.

But I didn’t miss this. Exactly the same principle applies in many other matters. For instance in the pro-vaccine back-scratching club Offit makes out that Fitzpatrick is a “real hero” who’s written an “excellent” book and so on.
Where big corporate money is involved it can fund much larger groups of people ganging/back-scratching together which enables them to appear to be above such “vanity”, but it is still very much just appearance. As Eysenck rightly said of great innovators, “they have no peers” (not that I consider Autism Insights great innovators). Some people then get mesmerised into faith by mere sheer numbers of people making out one another to be great competent hero scientists. Bahh, Bahh.

they should not be refereeing their own papers.

In an ideal world that is true. But in a world where an overpowerful crooked corporate system severely corrupts the editorial selection process, people should be enabled to get their contributions seen and heard regardless of such over-”idealistic” censoriousness.

Or using their papers to drum up business for their clinic.

Exactly analogously to what the corporate-funded gangs do.

Mr. Clarke, where in Dr. Offit’s books does he even mention neurons? There is exactly one instance of the word “neuron” and it is quote from Kinsbourne.

Offit page 145-6: “More important, the notion that chelation therapy can heal the brains of children who had actually suffered mercury poisoning is false. Once a brain cell has been damaged by a heavy metal like mercury it is permanently damaged. [...then some further unsound debunking of chelation…] [So] it didn’t make sense that it would work.”

Do you have any actual rebuttal to my exposing of Offit’s false argument there?, a false argument that self-interestedly seeks to deprive the tragic victims of the opportunity to learn of a proper therapy for their condition. How much more disgraceful can Offit’s offence be there?

You also have very little understanding of how DNA works.

But you give no explanation of this supposed deficit of understanding. And I had already replied to that particular line of denialism in this post here. (The full discussion of evidence concerning mercury is contained only in my update review not yet available on the website yet.)

Also it is not just Dr. Offit who thinks chelation is worthless for autism.

So what?, the entire trillionaire pharma establishment always wishes to deny the existence of any non-patented treatment. The history of medical discovery is absolutely studded with “leading experts” resisting the greatest discoveries.

And Rimland is not exactly considered credible.

For the same unworthy reason just above. Though Rimland did make one mistake in my view.

You are just an armchair prognosticator with a whacked out theory, and a couple polite responses from psychologists who know very little about biochemistry. Go away until you can find a real biochemist to show that DNA can be changed with the minuscule amount of mercury that used to be in vaccines.

Sad. I hope you feel better soon.
(And btw I have never been of the view that vaccines caused any autism.)
Sullivan
October 8th, 2010
10:53:22

RPClarke,

you seem to want people to comment about your blog post. If they wanted to do so, they would go to your blog and comment.

I don’t see any real substance in your comments here, or your posts on your blog. Lot’s of “corporate funded blah blah”, though. I hope that you get something from your writing.
RPClarke
October 8th, 2010
11:17:42

I was just commenting on what I read here. I cite from my autismcauses site in order to reduce re-stating of material. That site is primarily to present material supplementary to my papers rather than to attract comments.

“I don’t see any real substance….”

I’m sure you’ll agree there is a blindness of brains analogous to the blindness of eyes, but I guess we’ll just have to agree to disagree as to which of us has it the more!
Sullivan
October 8th, 2010
11:18:47

I’d agree but I can’t see your comment ;)
Tara Marshall
October 8th, 2010
15:20:09

Um, just a few points.
A follow-up study on Kanner’s original index cases showed that 1/6 of them had gone on to regular paid employment as adults. One was married with children. I think we all have to agree that Kanner’s kids were autistic, since we wouldn’t have it as a diagnostic category without them. :-)
Hans Asperger noted in a 1951 paper that something close to 40% of his study children had Celiac Disease. This is BEFORE we had testing for celiac, back when people diagnosed it by putting the person on a gluten-free diet and seeing if his symptoms improved. If you hang out on any of the celiac pages, you note that children of celiacs who are not celiac themselves but are mothers, tend to notice that their children sieze and have developmental delays. A few have been diagnosed with autism. Removing gluten from the diet mysteriously seems to clear up these symptoms.

Oh, and research does bear out that most autism is a single-occurring event in families, however, since most families stop having children after having a child with autism, they may be somewhat biased, as the papers point out themselves.

I am from one of those familial clusters. My father didn’t talk until he was 6 and became a computer engineer. On a side note, work on all his projects came to a stop when he didn’t go into the office, since he never labelled his punchcards, having the unusual ability to read the code right off the cards. He was also covered in small, open sores for his entire life that looked like textbook dermatitis herpetiformitis. His mother had an older brother who was sent back from a school for the Deaf when he was 5, losing that diagnosis and never gaining another, though the family still called him deaf-mute. I’m guessing severe autism. One of dad’s brothers was an artist who never married, the other was a college professor of plant biology with a greenhouse in his backyard and a horticulturalist for a wife. Questionable.

My mother is “just” an OCD collector with Borderline Personality Disorder, but her sister was diagnosed as “mental retardation and schizophrenia” when she was 5 years old. My aunt is definitely and decidedly autistic, we got along wonderfully when I was 7-15 and developmentally not too far ahead of her. My mother’s uncle was a bachelor professor who lived with his parents for their entire lives, and then stayed in their house until he died. My mother’s grandmother was “allergic to wheat” and used corn and potato flours in all her recipes. When great grandma went to the nursing home, she shriveled up and died in 3 months on their gluten-filled food.

I’m another woman on the spectrum who has had severe GI issues my entire life. Never got any real help for them, the doctors wouldn’t even read anything I gave them. The ONLY things that ever helped me feel better were the gluten free diet, removing soy, the SCD (Specific Carbohydrate Diet) when I developed a lovely yeast infection in my gut, and megadoses of vitamins. I tried the psych meds first, they were a disaster and would have left me a homeless mental patient if it weren’t for a friend of mine who let me stay on her couch for a few months while I got myself sorted out and detoxed.

Oh, and yes, I was fully vaccinated as a child, including the MMR. I was born in the 1970s.
RPClarke
October 9th, 2010
06:38:54

A follow-up study on Kanner’s original index cases showed that 1/6 of them had gone on to regular paid employment as adults.

Tara, you’re not old enough to know, but at that time the concept of being unable to get a job just didn’t exist. Getting a job was easier than falling over. I know because I was there. That stat doesn’t mean all 1/6 were at all cured, merely that people were being kind, which was easy in the 1950s because there was so much money and optimism around, so different from your own lifetime; wives didn’t need to work. More to the point was that the other 5/6 of Kanner’s did not have a paid job even in those cushy times.

Hans Asperger noted in a 1951 paper that something close to 40% of his study children had Celiac Disease.

And I noted in a 1993 paper that autism was far from just being an abnormality of brain/psychology.
Nutritionists such as Weston Price, and health-gurus such as Mercola have been pointing out for yonks that modern grain products are not our natural ancestral diet and without the traditional processing (now largely lost knowledge) these foods are far from good for us, phytates and oxalates for a start, let alone gluten.

The fact that someone dies within 3 months of going into carehome is utterly unremarkable. They only move to a carehome if they are already on the way out anyway, and then they have this additional devastating stress of being uprooted and put in a sort of prison. And the carehome situation implies they have been effectively dumped by, thrown out by, their children (who’d otherwise support them at home).
Would be more remarkable if they didn’t just die after 3 months.
Chris
October 9th, 2010
18:30:23

1.5 Time Cubes for Mr. Clarke.
daedalus2u
October 9th, 2010
19:40:10

Mr Clarke, do you have a reference with data showing that chelation does reverse heavy metal damage in the brain? As far as I can tell there is a little data for inorganic mercury and none for organic mercury. Actually the data seems to indicate that chelation for organic mercury makes any damage worse.

http://www.ncbi.nlm.nih.gov/pubmed/19027035

If chelation all by itself causes damage (which we know it does), then there needs to be pretty good dose-response data showing that at a particular dose of heavy metals, the residual damage from the heavy metal (at the particular dose in question) is worse than the damage from the chelation agent (at the particular dose in question).
RPClarke
October 9th, 2010
21:18:00

Daedalus, thanks for the question of evidence regarding chelation but it can’t be adequately answered without some length. Anyway I need to compose an answer it anyway so I’ll see what I can do here in a following comment. I’ll here just briefly comment on that citation you’ve mentioned there.

Frankly I was stupefied to read such utter b.s. (not your fault to be sure!). The authors are either liars or idiots (or victims of some department of misinformation). Chelation is absolutely, very-well-known not to be about some ‘detoxifying’ process within cells. Rather it is about getting the toxin out of the body (or in first instance out of an organ). That article is therefore utterly irrelevant because it is based on an utterly false concept of chelation. More later hopefully, though the team of me and myself are even more swamped here at the moment (not least the journal has just asked me to jiggle some things in my update paper ms). (On second thought that article is actually relevant as evidence of the dirty tricks going on in this field.)
RPClarke
October 9th, 2010
21:26:35

P.S. Haha, it’s a journal of €l$evier!, the publishers who spontaneously overrule the decisions of the scientific editors if not medico-politically-correct enough (in Medical Hypotheses). Questionable journal indeed!
daedalus2u
October 10th, 2010
02:00:44

Huh? So you don’t have any data showing that chelation reverses heavy metal damage, just hand waving and your opinion which seems to be at odds with much of the literature. You might want to read up on that literature some more so you don’t get caught being stupefied again ;)

How about this paper showing that chelation in the absence of heavy metal poisoning causes lasting cognitive impairment?

http://www.ncbi.nlm.nih.gov/pm.....ool=pubmed

If chelation all by itself can cause cognitive impairment, wouldn’t it be prudent to be very careful to not use too much chelation? The idea is to minimize the cognitive impairment due to both heavy metal poisoning and due to chelation. Once the heavy metals are brought down to levels below where damage occurs continued chelation is just going to do more damage.

If you want to understand autism and mercury, you need to look at the largest study of mercury and autism, the Faroe Islands study. Over 1,000 consecutive births were sampled for cord blood mercury and followed. Only a handful of children developed autism in that cohort, even with cord blood mercury levels more than an order of magnitude higher than considered “high” in the west. If the mercury levels observed in the Faroe Islands are not causing autism, then chelating the mercury out isn’t going to “fix” anything, it is only going to cause damage.

The idea that mercury from amalgam is responsible for the neurotoxicity of amalgam happens to be wrong. It is the zinc in amalgam that is toxic.

http://jdr.sagepub.com/content/82/3/243.long

Also, DNA doesn’t have any thiol groups for mercury to bind to, so mercury doesn’t bind to DNA. There are proteins with thiol groups that bind to DNA, these are called transcription factors. The largest class of transcription factors are zinc finger protein transcription factors. They have a number of thiol groups along the protein molecule that bind a zinc ion and cause the protein to fold into a certain shape such that it binds to a certain piece of DNA.
RPClarke
October 10th, 2010
07:46:52

Hey “Daedalus”, I just politely replied that I was going to prepare a presentation of an answer to your question, but clearly your opinionatedness can’t wait a few hours and so you have to presume my words were just some sort of bluff.

Your attitude shown above does not impress me, you come across as one who may be in the business of scoring points for his (unlikely to be her) “correct” perspective rather than engaging in a sincerely openminded inquiry. And now you’re firing off a machine-gun rally of other issues and questions.

That said, I think it is very good to have the opportunity to discuss possible faults (or in reality imagined faults) in one’s efforts. So much better than the professionals who avoid even mentioning my work. But then again even you here don’t put your name to your critique here, unlike myself.

I’m a person with majorly excessive demands on my time and energy, myself disabled from age 15 by the mercury you defend (and whose attempts to get treatment have been met with the usual disgraceful parade of deceits). And without any team of assistants here (though you are welcome to volunteer!).

Anyway, we have to work with people as they are, and I do hope and intend to find time to properly reply to your not-entirely unreasonable questions there, in due course. I just hope you can appreciate that I can’t reasonably be expected to function as some sort of auto-magic answering machine of scientific expertise here!
RPClarke
October 10th, 2010
08:02:58

I’ll make a start by first replying to this:

Also, DNA doesn’t have any thiol groups for mercury to bind to, so mercury doesn’t bind to DNA. There are proteins…

I never said DNA has thiol groups. No-one has ever said that thiol groups are necessary for mercury binding. Selenium and methyl don’t have thiols and yet they certainly “bind” mercury. My thesis that mercury is involved in autism as an antiinnatia factor is presented in my update review, which I am at present right now needing to get on with preparing (adjusting) for the journal editors. It would not be the right use of my time to meanwhile present it in dribs and drabs here. But as you insist….

The update review cited four references of studies which report mercury binding to DNA and thereby dose-dependently reducing gene-expression. That’s four studies that show that your “impossible” actually happens.

The rest of your objections are equally baseless. I appreciate that you are no less frustrated having to wait to read my answers than I am in having to wait to write them. Meanwhile have a nice day!

You might want to read up on that literature some more so you don’t get caught being stupefied again

... and a little modesty might go a long way.
RPClarke
October 10th, 2010
08:28:03

If you want to understand autism and mercury, you need to look at the largest study of mercury and autism, the Faroe Islands study. Over 1,000 ….

Indeed. And if you want to understand my understanding of autism and mercury you need to study my update review which documents it. Yet you’ve made no attempt to.

The idea that mercury from amalgam is responsible for the neurotoxicity of amalgam happens to be wrong. It is the zinc in amalgam that is toxic.

It’s most impressive how in your mind that utterly irrelevant in vitro study is able to single-handedly overturn the understanding that is based on hundreds of published studies about mercury and amalgam.

If you want your critiques to be taken seriously, you might be well advised to less unreflectively, presumptiously and conceitedly deride my own efforts as supposedly shallow folly.
RPClarke
October 10th, 2010
11:40:22

My reply to “daedalus”’s question about chelation is a bit too long to place here, so instead I’ve put it as this post on my own site. As I am far from talented in competent verbalisation, it is liable to get subjected to my usual retinkering.

Meawhile I really must now get back to murdering my enemies, and the other such humdrum tasks of mere survival.
daedalus2u
October 10th, 2010
13:56:27

For some reason I can’t seem to comment at your blog.

If you look at the Faroe Islands mercury levels

http://www.ehponline.org/membe...../7842.html

The inter quartile range was 13.1 to 40.4 micrograms/L in cord blood. That is 65 to 201 nM/L. That means that 75% of the children in the Faroe Islands study had cord blood mercury levels above 65 nM/L. In the Hitlan paper, there were only two individuals with blood mercury above 60 nM/L, one ASD and one control.

There was a study of the incidence of autism in the Faroe Islands that included the age cohort tested for mercury at birth and later. In the 1,022 individuals tested for mercury there are at most 5 with autism (out of a total of 1,404 in the age cohort that included the mercury tested individuals).

http://www.ncbi.nlm.nih.gov/pubmed/17029020

There are at least 750 with mercury levels higher than the highest seen in the Hitlan paper and at most 5 out of those 750 have autism. If a mercury level greater than 65 nM/L produces an autism incidence of 1 out of 150, by what mechanism do the much lower mercury levels observed in the Hitlan paper cause autism?
daedalus2u
October 10th, 2010
15:19:13

Mercury was once used in a lot of medicines, the doses used in vaccines are quite modest. The doses of mercury that were used in teething powders were on the order of a grain of calomel, about 50 mg of mercury. That is 50,000 micrograms, about 4,000 times the dose of mercury in a vaccine (12.5 micrograms). These are the levels of mercury that caused pink disease. Pink disease killed multiple children a year. They were killed by mercury poisoning. Teething powders containing a grain of calomel per dose were sold by the many millions of doses per year for many years. Many millions of children received many thousands of times more mercury from teething powders than children a decade ago ever received from vaccines.
Let me repeat that. Many millions of children received many thousands of times more mercury from teething powders than any children ever received from vaccines.
http://www.pubmedcentral.nih.g.....d=10645305
Were there millions of cases of autism when those children were being given such gigantic doses of mercury?

From 1923 to 1948 the number of children who died from pink disease in England and Wales was 1280. We now know that pink disease was mercury poisoning, likely caused by children being given teething powders containing 65 mg calomel per dose. We know that many millions of powders containing 50 mg mercury per dose were sold (30 million by just one company in a single year) every year. Presumably those doses were used, and so many millions of children were exposed to many thousands of times the largest amount of mercury ever present in a single vaccine.

http://www.ncbi.nlm.nih.gov/pm.....MC2068104/

Pink disease was caused by exposure to inorganic mercury. Calomel or elemental mercury in teething powders, elemental mercury exposure by inhalation can cause pink disease. Pink disease is caused by exposure to much higher levels of mercury than are contained in the full component of vaccines given over an entire childhood.

In 1947-48, pink disease (or mercury poisoning) was responsible for 23% of child deaths (174 deaths from pink disease out of 759 total).

Experiments in multiple types of animals show that orally ingested methyl mercury causes higher brain mercury levels than does injected thimerosal. Thimerosal has a short lifetime, first it decomposes to ethyl mercury, much of which is excreted, then to inorganic mercury. Once the mercury in thimerosal has become inorganic mercury, then we can use the enormous body of data available on the toxicology of inorganic mercury to understand how it behaves. After a month or so, the only mercury remaining from injected thimerosal is inorganic mercury. There is nothing magical about the inorganic mercury from thimerosal, it is the same as inorganic mercury derived from methyl mercury, derived from calomel, derived from elemental mercury.

With this understanding of the pharmacology of how thimerosal is metabolized from an IM injection, it is completely understandable why there have been no reported cases of pink disease from thimerosal exposure due to vaccines. There is simply not enough mercury present to produce the toxic symptoms of mercury poisoning exhibiting as pink disease. Toxic levels of mercury have never been reported in any tissue compartment either. Postmortem analysis of autistic brain tissue doesn’t show levels of mercury that are toxic or that are even elevated.

Pink disease occurred and was understood when analytical chemistry was in its infancy. Some of the mercury exposures and early measurements of mercury levels in children with pink disease are breath-takingly high.

http://www.pubmedcentral.nih.g.....id=5641461

In one case a 3 year old developed pink disease after receiving 180,000 microgram calomel, and was excreting mercury in the urine at concentrations exceeding 1,000 micrograms per liter. In another example a 1 year old was exposed to 180,000 micrograms mercury, and perhaps as much as 330,000 microgram mercury (if the 3 Steedman’s doses in the yellow wrapper did each have 1 grain of calomel).

In this article pink disease is characterized as a “hypersensitivity” to mercury because many children were given these teething powders without developing pink disease. That a small subset of children (hundreds or thousands among millions) are “hypersensitive” to 50,000 micrograms (or more) of mercury doesn’t suggest to me there is a larger set of children (1 in 150) that are sensitive to 12.5 micrograms and develop symptoms (autism) unknown during the time when many millions of children received many thousands of times more mercury. Some children with pink disease excreted in urine in one day more mercury than any child has ever received from their entire vaccination schedule in their entire childhood.

How many cases of pink disease were there when thimerosal was in vaccines? None.
How many children develop pink disease from vaccines? None.
How many children died from mercury poisoning due to mercury in vaccines? None.

Autism does not have symptoms similar to mercury poisoning. Autism certainly lacks the most important and quintessential diagnostic symptom of mercury poisoning, that would be an elevated level of mercury.

You and the others in the anti-vax “mercury causes autism” cult can delude yourselves that “mercury causes autism”. It doesn’t. Those of us in the reality based community have looked at the data, considered it, concluded that the idea of mercury causing autism is inconsistent with abundant reliable data from many researchers going back 50+ years, even before there was diagnostic criteria for autism.
RPClarke
October 10th, 2010
19:41:00

Daedalus, you continue with sausage-machine production of objections which are not soundly considered. My theory and its extension in the update have nothing whatsoever to do with mercury in cord blood, or mercury applied to the skin, or swallowed orally, or thimerosal, so all that lot above here is irrelevant.

You and the others in the anti-vax

But I have never said vaccines cause autism, and repeatedly said they did not play any significant part in the increase.

Your blank assertion that “Autism does not have symptoms similar to mercury poisoning” is yet more b.s. showing you have a profound ignorance of the subject. Not least because you have not made any effort to study my update review. But then given your rigidly “you are wrong because” attitude I’m not sure you’re going to be offered the chance of reading a preview of it anyway.

I have patiently prepared answers to quite a number of your questions and misunderstandings on this page. But it is becoming clear that you are ineducable.

So I will now turn my attention to working with others who are more appreciative of my “delusions”, so goodbye for now.
RPClarke
October 10th, 2010
19:51:06

P.S, As far as I can tell the comments are working on my site. Maybe a setting of java or somesuch at your end is involved. (Or maybe blogger’s spam autodetector is expressing its opinion. ;)
daedalus2u
October 10th, 2010
22:47:08

I still can’t post comments.

If you are not anti-vax, I apologize for saying you were. It is hard to tell when you make baseless criticisms of Dr Offit and parrot anti-vax talking points. But if you say are not anti-vax, I will take you at your word.
RPClarke
October 11th, 2010
02:48:29

“daedalus”, thanks for your apology about the anti-vax assumption, though no need for it. I still don’t know why you can’t post comments to my autimcauses site, but in any case please consider yourself at least temporarily banned from commenting there on account of your drivel-barrageing abuse of myself on this page here.

I appreciate that you weren’t intending to be abusive, and didn’t think you were abusive. But that doesn’t change the reality which I explain at that link above. Hopefully we can have more-productive (note hyphen there) discussions at some future date but I doubt it’s going to be anytime this month. Cheers.
Chris
October 11th, 2010
05:58:30

Why do you have a blog without the option of comments?
RPClarke
October 11th, 2010
10:06:28

Chris—My autismcauses “blog” does have the option of comments; the comments have always been enabled and some people have posted them. It’s working now except apparently not for “daedalus”. But for reasons explained above I think that’s just as well in his case.

I greatly value discussion between disparate viewpoints and I am unusual in trying to promote it myself, as for instance in my venturing onto this site here. But not when it gets degraded by drivel-barrageing.

My Autismcauses.info is not really intended to be a blog, but rather to provide appendixes of material supplementary to the update review I am publishing in a journal, and opportunity for others to comment. It just so happens that I’m hosting it on free blogger com so it behaves like a blog.

It would be good to have some constructively critical discussion there, but I don’t really want it to become dominated by a forum function such as here at lbrb, let alone the excessive deluge of amateur comments/chat we can see over at Age of Autism.

I much appreciate the non-censoring ethos practiced here, but I do think the line should be drawn at drivel-barrageing, however well-intended.
Dawn
October 11th, 2010
13:40:32

@Mr Clarke: I read your post and honestly would have been more impressed if you had included peer-review references instead of only referring to one book that was not peer reviewed. You consistently attacked peer-reviewed articles but gave no references for your data. Will you have references once your journal article is printed? If so, I would like to read it, and them.

I, like daedalus, was unable to post comments there. Since you say that comments are allowed, perhaps that is due to the fact that I am using IE6 right now; I’ll look again when I am home and using Firefox (which your blog states is the preferred system).
RPClarke
October 11th, 2010
15:29:44

Dawn—I’m not sure which post of mine you are referring to, or where I referred to a non-peer-reviewed book, or didn’t include peer-reviewed refs. (Btw, in practice most published books go through a process much the same as “peer-review” which means that any sufficiently pro-establishment junk is uncritically accepted whereas any non-standard or heresy is rejected no matter how sound.)

>You consistently attacked peer-reviewed articles but gave no references for your data.

Not clear what specifically you’re referring to there but probably I was raising well-known long established findings, hence tending not to need citation. And please note my recent comments about drivel-barraging. I am not here as a free educational question-anwering service much as I’d like to be. My autismcauses posts are intended mainly for an audience of people already familiar with the lit (or capable of verifying for themselves).

>Will you have references once your journal article is printed?

It would be hard to get an article accepted that didn’t contain adequate refs. Einstein’s relativity got away with just 2 but now that’s no longer considered enough!

>If so, I would like to read it, and them.

Send request to my email address. However I am at the moment doing some, well trying to do some, further enhancing of it, so not the best time to ask as it will put me in a bind!

People are not supposed to be using IE6 nowadays due to insecurity. So happens I myself use it for just reading the met office and it does my site ok too.

Maybe blogger’s spam autofilter doesn’t like you either hah!

>using Firefox (which your blog states is the preferred system).

But you shouldn’t believe everything I write!
I am just going off to do urgent work on my allotment and I doubt if I’ll be looking at any screens or keyboards while doing so. Gettit? Cheers.
RPClarke
October 11th, 2010
15:44:17

PS to preceding: – The journal is moaning for one thing that my charts aren’t technically clear enough. If there’s anyone who might do a better job than myself of converting excels into tiff or eps files, I’d be most grateful for their assistance as I already spent yonks trying to get them clear! (Actually they look fine on my ten year old monitor so I suggest just a global banning of the use of lcds.)