Autism Insights, another journal for questionable autism research?

30 Jan

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.

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

  1. KWombles January 30, 2010 at 01:15 #

    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.

    • Sullivan January 30, 2010 at 01:46 #

      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.

  2. Emily January 30, 2010 at 01:20 #

    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 30, 2010 at 01:47 #

      Emily,

      yeah, “Medical Veritas” has a new competitor for questionable research.

  3. passionlessDrone January 30, 2010 at 07:01 #

    Hi Sullivan –

    Very nicely done. That is pathetic.

    – pD

  4. Laurent January 30, 2010 at 11:22 #

    Money and hope exploitation is a basic scheme in the autism field.

  5. Laurentius Rex January 30, 2010 at 12:30 #

    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.

  6. silkysienna January 30, 2010 at 23:24 #

    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!

  7. Brian Deer January 31, 2010 at 14:52 #

    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?

  8. Kev January 31, 2010 at 15:15 #

    How ironic that they should stoop to mimic the bad behaviour of a vaccine maker.

  9. Broken Link January 31, 2010 at 15:37 #

    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?

  10. Laurentius Rex January 31, 2010 at 15:47 #

    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 🙂

  11. Laurentius Rex January 31, 2010 at 15:56 #

    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.

  12. Laurentius Rex January 31, 2010 at 15:59 #

    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.

  13. Anthony Cox January 31, 2010 at 22:09 #

    JPANDS not good enough for them eh?

  14. dr treg February 1, 2010 at 01:10 #

    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/2003/12/mmr-never-mind-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. ÂŁ 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.

  15. daedalus2u February 1, 2010 at 19:20 #

    Paying ÂŁ30,000 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. ÂŁ30,000 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.

  16. Tom February 1, 2010 at 19:48 #

    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.

  17. dr treg February 1, 2010 at 19:49 #

    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/2010/01/the-wakefield-mmr-verdict/
    Tom – or Tommy baby? since you are into changing names – nicely taken out of context. Are you a journalist?

  18. Laurentius Rex February 1, 2010 at 20:16 #

    Dr Treg

    I replied to your comment some moments ago here https://leftbrainrightbrain.co.uk/2010/01/andrew-wakefield-what-happens-next/#comment-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)

  19. Tom February 1, 2010 at 21:53 #

    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.

  20. David N. Brown February 1, 2010 at 22:56 #

    I nominate lawyer Jim Moody for attention, for his press releases defending Wakefield and libelling Michael Rutter.

  21. Laurentius Rex February 1, 2010 at 23:14 #

    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.

  22. RAJ February 2, 2010 at 06:06 #

    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/Methods-and-compositions-for-autism-risk-assessment-dt20071025ptan20070248956.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?

  23. David N. Brown February 2, 2010 at 07:47 #

    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.

  24. Laurentius Rex February 2, 2010 at 10:16 #

    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.

  25. laurentius rex February 2, 2010 at 10:57 #

    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.

  26. Laurentius Rex February 2, 2010 at 11:13 #

    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.

  27. Tom February 2, 2010 at 17:05 #

    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.

  28. David N. Brown February 2, 2010 at 21:57 #

    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.

  29. Joseph February 2, 2010 at 22:24 #

    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.

  30. Prometheus February 2, 2010 at 23:19 #

    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

  31. Laurentius Rex February 2, 2010 at 23:39 #

    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.

  32. Prometheus February 3, 2010 at 00:10 #

    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

  33. Laurentius Rex February 3, 2010 at 00:25 #

    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.

  34. RAJ February 3, 2010 at 04:55 #

    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”.

  35. Laurentius Rex February 3, 2010 at 08:22 #

    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.

  36. Tisah Tucknott February 3, 2010 at 17:02 #

    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.

  37. RPClarke August 14, 2010 at 10:19 #

    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”?

  38. Laurentius Rex August 14, 2010 at 12:03 #

    “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.

  39. RPClarke August 14, 2010 at 16:52 #

    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/science/2010/aug/10/autism-brain-scan
    and then at
    http://www.guardian.co.uk/science/blog/2010/aug/12/autism-brain-scan-statistics
    Interesting but having entailed yet more media hypeing by whoever.

  40. Tammy Swarek October 7, 2010 at 16:41 #

    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 7, 2010 at 16:53 #

      Errr….

    • Sullivan October 7, 2010 at 17:21 #

      My guess is that they will publish their books anyway. (oops, I am predicting the recent past)

  41. RPClarke October 7, 2010 at 18:07 #

    But how recent is “recent past”?
    Offit’s False Arguments was published 2 yrs ago.

    • Sullivan October 7, 2010 at 18:43 #

      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.

  42. RPClarke October 7, 2010 at 19:03 #

    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.

  43. Tammy Swarek October 7, 2010 at 21:41 #

    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 7, 2010 at 21:53 #

      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.

  44. Tammy Swarek October 7, 2010 at 22:13 #

    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.

    • Sullivan October 7, 2010 at 23:15 #

      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.

  45. Tammy Swarek October 7, 2010 at 22:26 #

    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???

  46. RPClarke October 7, 2010 at 23:28 #

    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.

  47. Chris October 8, 2010 at 04:00 #

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

  48. RPClarke October 8, 2010 at 04:13 #

    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.

  49. RPClarke October 8, 2010 at 04:27 #

    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?

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