Why investigating Wakefield matters

1 Aug

I occasionally get emails or blog comments along the general lines of:

Why do you do this? These people [Wakefield, DAN, whomever] are trying to help autistic kids!

The (il)logic train is very simple to these people: X listened to their ideas about vaccines and autism, X tries out never-seen-before-treatments on autistic patients therefore X is a hero. When X gets examined with disdain from mainstream medicine X becomes a martyr.

There is a bizarre disconnect at work here. Somehow we have progressed from an idea that scientific enquiry adds to the general body of scientific knowledge to the idea that its just about OK to do anything to patients irrespective of what’s actually ‘wrong’ with them in order to advance a poorly supported hypothesis.

Here’s why this matters to me and why Andrew Wakefield is a prime example of all that has gone bad in the small but very vocal subset of autism parents who believe MMR/thiomersal/vaccines in general causes/triggers autism.

First and foremost is the basic injury done to the scientific objective truth. This is, I agree, an entirely abstract concept but it has implications in our every day real-world lives. Science is what brought us the nice cubes of ice in our whisky and also brought us the Nuclear bomb. Whatever we personally think of these results, science has prevailed in both cases. The _truth_ has prevailed.

The people I and others refer to as the Mercury Militia (referring to the anti-vaccine/autism/parent activists) are not interested in the truth. This is not an opinion, it simply is. From the National Autism Associations deliberate and outright lies about what science has revealed about autism, to their supporters attempts to silence the debate via threats of violence and encompassing Lenny Schafer’s admission that there is not enough science to support the idea of a vaccine hypthesis and their only chance of ‘winning’ is via a legal route with vastly lower standards of evidentiray proof as well as David Kirby’s refusal to fess up to the terms of the hypothesis he himself set.

What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs.

As far as scientific objectivity and a search for the _actual_ truth is concerned – forget it. This is a set of people who are simply uninterested. If a story/hypothesis emerges that doesn’t embrace vaccines as causative agents then they will attack it. And what they will attack it with is mostly lies.

I have a question for them and people who believe and trust them – and I know they read this blog. The question is this: how good do you think the quality of any information/data is that emerges from the mouths of people who lie, evade and threaten? How good do you think the science is that originates from people who plagiarise other peoples work? How accurate do you think advocacy groups that lie to the media about what they believe are?

At some point there has to be a time when even self-denial cannot support these people. As we have seen, recent attempts to coerce the media have resulted in humiliating climbdown after climbdown. How far can denial continue to power the majority of the new soccer-mom, middle-class powered anti-vaccine movement of the naughty noughties?

Let’s take an example that touches on the title of this blog – Andrew Wakefield. His hypothesis regarding MMR and autism was discussed at length during the recent Autism Omnibus hearings (Cedillo, June 2007).

Andrew Wakefield is seen as a pretty much a demigod amongst the Mercury Militia. His word is taken on pure faith. Why? Because he agrees with certain parents that the MMR jab caused/triggered their child’s autism. The basic hypothesis is as follows:

1) Child is injected with MMR
2) Measles virus (MV) travels to gut causing various gastro issues
3) MV carries on travelling to the brain causing autism symptoms

ergo – MMR causes autism with associated gastro issues.

The whole hypothesis stands or falls on finding vaccine strain MV in the guts of autistic children. Wakefield (and others) claim they have. However, the facts tell a different story.

Wakefield (and all others) used a technique called PCR to ‘find’ MV in their subjects. During the afore-referenced Cedillo hearing, Dr Stephen Bustin gave testimony. Bustin is possibly _the_ world expert on PCR. Not only does Bustin use PCR every day, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the A to Z of Quantitative PCR. which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences.

Basically, when it comes to PCR, the technique Wakefield (and others) used to ‘find’ MV – this is the guy.

NB – this whole section of evidence I blogged extensively, including quotes. Please read for more detail.

Bustin was first and foremost concerned that:

1) The technique that utilised PCR and employed by Wakefield (and others) was essentially useless. No controls were used. This is a serious scientific omission and makes comparing the data accurately impossible.
2) The technique failed to outline procedures for dealing with contamination of data
3) There were mismatched and misrepresented data designs

These items raise very grave questions over the _methodology_ used. The next set of concerns reveal the full extent of the scientific shambles of the entire MMR/autism industry.

This is a vital point to understand before we discuss these things. It is vital that we remember that, aside from one unpublished poster presentation (Walker 2006), _all_ , I repeat _all_ science that has claimed to find vaccine strain MV in the guts of autistic patients used the same lab to get its results – Unigentics, the lab of Professor John O’Leary. It is also vital to remember that Stephen Bustin did not just examine for afar. He spent over 1,5000 hours in the O’Leary lab before coming to his conclusions.

His conclusions were devastating.

1) The O’Leary lab had failed to take necessary steps. This omission made it impossible they were detecting MV.
2) The O’Leary lab was contaminated.
3) It was the contamination that O’Leary’s lab was detecting, not MV. Its worth quoting Bustin at this point:

So all of this evidence suggests very, very strongly that what they are detecting is DNA and not RNA. Because measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus RNA. They are detecting a contaminant.

It cannot be any clearer. According to the the man who is the recognised world expert on the technique that *all published science claiming to find MV in the guts of autistic kids* lab utilised, it is simply not possible that this lab could’ve detected MV. Without MV, there is no MMR/autism hypothesis.

And what is the response of Wakefield’s supporters to all this? I will quote John Stone, who fancies himself the cool calm voice of the MMR branch of the autism/antivax movement. When presented with Bustin’s testimony, he said:

I do not think there is much to be gained by arguing about the contents of a test tube….

This tells us all we need to know about the levels of denial that operate in this arena. Stone resorts to saying that the Cedillo case was not settled yet, which is true. However he evades the point that Bustin’s testimony is not dependant on legal justification. It is dependant on scientific accuracy. Given that it is *documented by O’Leary’s own lab procedure* that they omitted key parts of the process necessary to establish the presence of MV, I really don’t know what else there is to say on the matter.

Secondly is the effect all this anti-vaccination rhetoric has on the health and safety of public citizens. News stories that are accumulating started circulating a year or so ago on dropping immunisation rates and rising deaths and injury from vaccine-preventable illness:

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic.

Vaccine uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, last year, 18 months after these warnings, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases in that last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

This is real evidence of harm. Never forget it can be traced back to a man with absolutely no evidence at all to support the science of his claims.

Thirdly is the effect all of this has on autism and autistic people like my daughter. The vaccine induced blind panic that the people behind these hypotheses and their media agents at the NAA, SafeMinds, Treating Autism and Generation Rescue have done their best to inculcate is having a toll on autistic people. Here’s a passage from an email I received a few months ago:

…when I said he was autistic, they told me I shouldn’t bring him to a school, that vaccines had made him ill and that their kids could catch that illness….after all, these women reasoned that if it [autism] could be caused by vaccines, it could be caught and passed on to other kids….

This is frightening. Autism as a condition has a lot of stigma to deal with already. The fact is that any hypothesis that has gone on now for over 10 years without any scientific support, as the vaccine/autism one has, needs to shut up and move on. No good can come of creating more stigma for no benefit.

In 2004, the BBC discussed a report from the Institute of Child Health, the National Autistic Society and the Parents’ Autism Campaign for Education that looked at the state of autism research. One of its conclusions was that:

….the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder….

This has led to a situation wherein:

…It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

So, a dwindling 8% of all autism research fundings looks into interventions. The marketing of the MMR hypothesis has meant that this pathetic 8% is all that autistic people can expect in terms of educational research, programs for adults – basically if it will have some tangible impact on the lives of autistic people then it comes out of this 8%.

This then, is the legacy of the autism/vaccine hypothesis and its supporters. Bad for the truth, bad for science, bad for public health and bad for autistic people.

152 Responses to “Why investigating Wakefield matters”

  1. notmercury August 2, 2007 at 19:10 #

    No. Mercury is an element and doesn’t decay unless you are talking about radioactive decay. Mercury is not degraded by any enzyme because it cannot be degraded this side of a cyclotron.

  2. Matt August 2, 2007 at 19:48 #

    “he has tested three times the level of testostarone
    as nt child we know testostarone pulls in mercury.”

    1) we don’t know that testosterone pulls in mercury. The mercury/testosterone connection is even weaker than the mercury/autism connection. That is to say–it is baseless.

    2) if your child has 3x the testosterone level of an NT child: TAKE HIM TO AN ENDOCRINOLOGIST NOW. The Geiers are (1) a geneticist and (2) a non doctor. If your kid broke his leg would you take him to an ENT?

    When the Geier’s started the so called “Lupron Protocol” they were shocked to see testosterone levels rise after they initiated “treatment”. Wow, all they had to do was read the insert that comes with the drug to realize that this would happen. They didn’t even do their basic homework.

    If you took your kid to Children’s Hospital and got a reliable test showing high levels of testosterone, they would not say, “I know nothing”. They would send you to an endocrinologist.

    If the Geier’s were doing their job, they would refer you to a specialist in your area as well. Instead, they pretend it is an autism treatment and add chelation.

    Take a look at the Geier patent application for the “Lupron Protocol”.

    They had two test cases. They never tested the mercury levels when they were done. If the point was to remove mercury, why leave out the critical piece of data? Very odd since all their claims depend on that.

    Matt

  3. Matt August 2, 2007 at 19:50 #

    In this context, mercury’s “half life” relates to its residence time in the body. I.e. it is a meaure of how quickly the body rids itself of mercury.

    It is not the same half-life of radioactive decay.

    Matt

  4. Matt August 2, 2007 at 20:14 #

    “I’ve had chronic hives since 1997. That same year i had a bridge put in to replace two teeth that got knocked out at a hockey game.”

    Bridges are not made from almalgam. Are you sure it was hockey and not rugby?

    “Another interesting thing happened to me recently. 2 weeks ago i broke a tooth and exposed the amalgam filling. I broke one of the big molars in the back. That same day i was very sick right after it happened. This is what caused me to start researching amalgams, and incidentally mercury. ”

    I’m sorry, but your stories are not really holding up to me anymore. Few people can regurgitate so much of the mercury data after 2 weeks. Even fewer would have the confidence to believe in it in so short a time. Sorry if you have been walking around for two weeks with a broken molar–that seems like the sort of thing a dentist would make an emergency appointment for.

    Matt

  5. Steve D August 2, 2007 at 20:47 #

    Bones –
    Perhaps your head is spinning due to your own amalgams, eh? Just saying.

  6. Anonymous August 2, 2007 at 20:55 #

    Yes i am positive it was a hockey accident. Strange you wouldn’t believe me on this. I think i would know what caused it seeing that they were knocked clean out of my head. One tends to remember an experience like that. The bridge cement is made of amalgam and other precious metals. It is amalgam under the porcelain ceramic. The ceramic is just a coating that is melded over the amalgam. My dentists secretary told me this last week.

    And yes it has only been a few weeks since i have been looking at the mercury connection. Don’t really care if you believe me, i know its true. In fact i could probably go into my Internet Explorer “history” folder and find exactly which days i researched all these things. Or better yet i can look at each specific file and see when i saved it to my hard drive.

  7. notmercury August 2, 2007 at 21:00 #

    “It is amalgam under the porcelain ceramic. The ceramic is just a coating that is melded over the amalgam. My dentists secretary told me this last week.”

    Could she have said Alloy not amalgam? There is no reason to use mercury amalgam in bridge work.

  8. bones August 2, 2007 at 21:02 #

    Steve D –

    Ya think? 😉

  9. Anonymous August 2, 2007 at 21:04 #

    Here’s proof of amalgam allergies. Oh and look urticaria is a symptom. Hmm….

    [Mercury–is it a respiratory tract allergen?][Article in French]

    Drouet M, Le Sellin J, Bonneau JC, Sabbah A.
    Laboratoire d’Immuno-Allergologie, CHRU, Angers.

    Mercury is a well-known allergen in dermato-allergology, often manifesting as delayed type hypersensitivity contact eczema. Immediate hypersensitivity reactions (urticaria, anaphylactic shock) have also been described for this allergen, most frequently seen in patients with the delayed type contact eczema. To our knowledge this allergen has not been implicated in production of respiratory symptoms. We describe a patient who had aggravation of asthma by mercury contained in dental amalgam. When the dental amalgam was removed there was a great improvement in his asthma. This observation suggests that mercury in the form of dental amalgam may also be an allergen of the respiratory tract, which should not be surprising, bearing in mind the work that shows the existence of mercury vapours from dental amalgam.

    PMID: 2187473 [PubMed – indexed for MEDLINE]

    I am done posting here. I am sorry if i offended anyone. I also want to apologize for being such and jerk, expecially my first post about “flapping your gums”.

    Good luck to you all.

  10. bones August 2, 2007 at 21:06 #

    “In fact i could probably go into my Internet Explorer “history” folder and find exactly which days i researched all these things. Or better yet i can look at each specific file and see when i saved it to my hard drive.”

    Please, for God’s sake, don’t. I believe you…I BELIEVE YOU!!!

    Ahhhhhhhhhhhhhhhh……………*splat*
    [the sound of my body hitting the pavement after throwing myself off the top of a 50 story building]

  11. Bartholomew Cubbins August 2, 2007 at 21:16 #

    It is exceedingly important for people to realize that not all literature is equal. Simply because something is indexed on PubMed doesn’t mean that it is perfect, or even valid. The great thing about the web is the democritzation of knowledge, however even though I have access to the title and abstract of papers dealing with string theory, it would be ridiculous for me to use these titles and abstracts to build up a theory explaining some phenomena I’ve witnessed given my lack of expertise in the area. Yet I admit it is both tempting and fun.
    Note: Me != Deepak

  12. Matt August 2, 2007 at 21:27 #

    ” It is amalgam under the porcelain ceramic. The ceramic is just a coating that is melded over the amalgam. My dentists secretary told me this last week.”

    As notmercury says:
    “Could she have said Alloy not amalgam? There is no reason to use mercury amalgam in bridge work.”

    There are really good reasons to not use amalgam.

    Amalgam is very brittle and would not be used for a stress-bearing piece in your mouth.

    The advantage of almagam is that it is easily molded when it is first mixed together–it can be pressed into the holes in your teeth.

    Bridges and crowns are cast into molds. You don’t do this with mercury containing alloys. Mercury vapor would be a major problem.

    Matt

  13. MJ August 2, 2007 at 21:33 #

    When talking about science and specifically about the science involved in any controversial topic (such as autism) it still comes down to a matter of trust. There have been numerous cases in recent history where a) science has been just dead wrong or, more importantly b) the science has been corrupted by some outside influence.

    Take two examples from recent history, smoking (where the jury has finally reached a verdict) and global warming (where the jury is still out). With smoking there was a largely successful campaign waged by tobacco companies to “prove” that smoking had no ill health effects. These companies were largely successful in hijacking science for decades. So for the longest time the proven, peer-reviewed, scientific answer was that smoking had no health effects. It was only those fringe nut bags who thought differently. However, if you talked to people who smoked (as I used to) they would probably have told you that they knew smoking wasn’t healthy for them.

    In the US we currently have an administration that is effectively using science to say that there is no “proven” link between carbon emissions and global climate change. They even have the studies to “prove” it.

    So at the end of the day there is a credibility issue. There has been study after study to prove this or prove that. You even have studies that, using the same set of data, prove exact opposite conclusions (Pediatrics, 2005, 2006 studies on Diagnostic substitution wrt autism prevalence rates). So when Johnson n Johnson helps to fund a study to prove that their product is safe and not related to autism, do you believe that research?

    And when your personal experience contradicts what science tells you, what do you believe? Some person whose motivation you don’t know or what you saw?

    When you try a treatment such as chelation (which I haven’t) or GFCF diet (which I have) and see good results, what do you do? Look at the scientific literature and say nope, have to stop doing that, it hasn’t been proven to work?

    So until this gap between the everyday experiences and what science “tells” (and make no mistake, people quote science as the written in stone, immutable truth) you is closed, this debate is going to continue.

    And when people try treatments and they work (or seem to) to tell them that they are wrong because it hasn’t been proven in a study is slightly silly.

    So saying over and over “no proven evidence” and “show me the study” doesn’t help the issue, it only serves to polarize the issue further.

  14. Joseph August 2, 2007 at 21:33 #

    Here’s proof of amalgam allergies.

    You do realize that’s a case report, right?

    You might be interested in this one.

  15. Joseph August 2, 2007 at 21:39 #

    Simply because something is indexed on PubMed doesn’t mean that it is perfect, or even valid.

    There’s an interesting paper that argues most papers are incorrect. See here. That paper could be incorrect, mind you, but that’s very plausible. That’s why replication and rebuttals matter a lot. Also, certain types of findings (e.g. double-blind placebo-controlled) probably tend to be more correct than other types of findings (e.g. case-control).

  16. Matt August 2, 2007 at 21:50 #

    “So saying over and over “no proven evidence” and “show me the study” doesn’t help the issue, it only serves to polarize the issue further.”

    No, this is backwards.

    Promoting “treatments”, especially potenitally dangerous ones, without proof of efficacy polarizes the issue.

    Matt

  17. Steve D August 2, 2007 at 22:03 #

    MJ –
    The thing is, saying chelation or GFCF “works” is a bit too broad a statement. What did the treatment do, specifically? I have little doubt that some people’s behavior may change as a result of removing things like casein from their diet. But getting to the point of this discussion – did it make them “less autistic”? Same thing with chelation. And, by extension, should it then be marketed to other people with the buy-line “Will cure autism”. There is an issue of ethics here that cannot be overlooked.
    Then, when you get yahoos like Daniel talking about Lupron – now that is some serious stuff. Wicked, bad stuff. And, again, it is being sold as a cure for autism. I’m sorry, MJ, but that’s indefensible.
    I agree that at times the semantics of the debate too often focus on a specific study, or lack thereof, but the scientific method has value and a purpose in this case, and to ignore it would be folly. Further, to trust one’s own observations can be a very poor way to make decisions.
    For a better discussion of this aspect of the issue, look here:
    http://photoninthedarkness.blogspot.com/2007_03_01_archive.html
    and scroll down to the article titled “Listening to Autism”.

  18. Joseph August 3, 2007 at 00:07 #

    MJ, I do not believe your historical examples are accurate.

    With smoking there was a largely successful campaign waged by tobacco companies to “prove” that smoking had no ill health effects.

    Did they have peer-reviewed research published in reputable journals arguing a lack of a link, and these went without rebuttals? Did the scientific community buy it? I’d like to see these studies.

    In the US we currently have an administration that is effectively using science to say that there is no “proven” link between carbon emissions and global climate change. They even have the studies to “prove” it.

    Again, I know the views of the US administration and various interest groups. But I don’t believe there is peer reviewed research “proving” that global climate change does not exist. I’d like to see the studies you mention. The scientific consensus is strong on this issue. (A good example of how the government cannot effectively conspire to change the consensus on reality).

    You even have studies that, using the same set of data, prove exact opposite conclusions (Pediatrics, 2005, 2006 studies on Diagnostic substitution wrt autism prevalence rates).

    Yes, the authors have argued why that is. They used different methodology. Shattuck’s methodology was more rigorous in my opinion, but you can say I’m biased.

    Like I noted in a prior message, the initial finding doesn’t matter nearly as much as the scientific process that follows, consisting of rebuttals and attempts at replication (or in your example, Shattuck failing to replicate Newschaffer, and Newschaffer’s response to Shattuck).

    So when Johnson n Johnson helps to fund a study to prove that their product is safe and not related to autism, do you believe that research?

    Not in isolation. But I’m not sure which study you’re referring to.

    When you try a treatment such as chelation (which I haven’t) or GFCF diet (which I have) and see good results, what do you do? Look at the scientific literature and say nope, have to stop doing that, it hasn’t been proven to work?

    I guess a better question is why try it in the first place. GFCF is just a diet, no harm there (I’ve tried it, btw; even Jim Laidler has tried it – have you read his account?) Chelation, on the other hand, is not something people should try “just in case”.

    I’ve heard of parents who seem to be stuck with Secretin, because they believe that when they remove it, the child regresses, and when they use it, the child improves. Yet, the science is quite conclussive on Secretin’s ineffectiveness. We’re talking about many independent double-blind placebo-controlled studies, an ideal methodology. They have tried to determine if there are sub-groups of respondents, and so forth. Some of these studies are done by people who wanted to prove Secretin works. There’s no way this could be explained by conflict of interest. Yet, people’s personal experience says otherwise. That’s anecdotal evidence for you.

    BTW, there was a preliminary double-blind of GFCF — no effect as I recall.

  19. MJ August 3, 2007 at 00:44 #

    “No, this is backwards.

    Promoting “treatments”, especially potenitally dangerous ones, without proof of efficacy polarizes the issue.”

    No, actually it is the correct way around. If you have people who are trying treatments that have have some results with, even ones with some risks, it is wrong to dismiss them out of hand simply because there are no papers on the topic. If (and this is a big IF) the theory that autism is worsened/triggered by environmental elements is correct, then chelation would be the proper treatment ( Wilson’s disease anyone?).

    So the question to my mind is not whether to use chelation (given what I know right now I wouldn’t) but rather WHY do some people say that it works for them (for a given value of works). The default answer here seems to be because a) They are stupid and gullible or b) part of the mercury mob. I would propose choice c) because it works for them. So instead of attacking these people, how about talking to them and attempting to understand what it is that they see happening. And stop saying “you have no proof, show me the papers”.

    Here is a simple fact that seems to be getting lost in the debate – people aren’t stupid. There is some small percentage that will fall for anything, and there is some small percentage of people who will do anything to make a buck. But, for the majority, that isn’t true. if a doctor is selling them some bill of goods that isn’t having any effect chances are that they won’t keep doing it. Ergo, if they keep doing it they believe : a) the doctor is still right even without evidence or b) it is having an effect . I think that most people will fall into the second category.

    “The thing is, saying chelation or GFCF “works” is a bit too broad a statement. What did the treatment do, specifically? I have little doubt that some people’s behavior may change as a result of removing things like casein from their diet. But getting to the point of this discussion – did it make them “less autistic”? Same thing with chelation. And, by extension, should it then be marketed to other people with the buy-line “Will cure autism”. There is an issue of ethics here that cannot be overlooked.”

    As to GFCF diet, for my children, it does “work”. It makes then less autistic, improves their ability to focus, improves eye contact, allows them to be more communicative. It does not make them non-autistic but it does seem to be allowing them to make faster progress than they did before. But that is my kids, I can’t say that it will work for everyone.

    However, I do not advocate “Will cure autism”. And it is disingenuous to imply that just because I endorse some biomedical treatment that I would say that it would cure autism. Furthermore, I do not advocate using powerful drugs to treat it either. This isn’t a two party system here, there are more than just two extreme views. Most of us are in the middle. And I don’t think many people in the middle will say that they know how to cure autism.

    “agree that at times the semantics of the debate too often focus on a specific study, or lack thereof, but the scientific method has value and a purpose in this case, and to ignore it would be folly. Further, to trust one’s own observations can be a very poor way to make decisions.”

    One of the main themes I was trying to express was that while the scientific method does have value, it is only as valuable as the process that creates it. And in the case of scientific studies, the process is easily corrupted. And there is a large amount of money riding on this issue and companies (in the US at least) have shown themselves willing to do almost anything to make more money or avoid being sued. And again, I am not implying that there is a large conspiracy here. I am simply saying that when you have corporate money involved in these studies when the companies have a vested interest in the outcome the study has to be in doubt from square one.

    So when there is a lack of independent research OR if there are reports of a treatment working on a decently large scale, to dismiss the results because of the lack of a study is just silly.

    But here is a question that I would think to be interesting, I haven’t seen anything that really addresses the science of this issue. And Steve D, you seem to have some idea here about this, why does the GFCF diet make a difference?

  20. Joseph August 3, 2007 at 00:52 #

    The default answer here seems to be because a) They are stupid and gullible or b) part of the mercury mob. I would propose choice c) because it works for them.

    No. The reasons are a) placebo effect, b) assessment bias, c) natural developmental progress, and d) any concurrent interventions that do work.

    Again, Secretin is an excellent example of one or more of these effects in action – and very much so.

  21. Matt August 3, 2007 at 01:06 #

    “No, actually it is the correct way around. If you have people who are trying treatments that have have some results with, even ones with some risks, it is wrong to dismiss them out of hand simply because there are no papers on the topic.”

    If you think something works, you promote a study of it. To promote it as a treatment pre-study is the wrong way around.

    It may be wrong to dismiss something “out of hand”. However, if you don’t have a study, and your logic is poor, it is correct to dismiss it based on flawed logic. Claiming that mercury binds to testosterone based on the data that the Geiers had–bad logic. It is not only correct, but required of one to speak up when people are making such leaps to potentially harmful treatments.

    ” If (and this is a big IF) the theory that autism is worsened/triggered by environmental elements is correct, then chelation would be the proper treatment ( Wilson’s disease anyone?).”

    What a great example of bad logic. On a small scale, but it is truly bad logic. If the environmental trigger is pesticides how would chelation be of any help? If the problem were something like Wilson’s disease (difficulty with copper), how would a lead chelator help?

    Matt

  22. MJ August 3, 2007 at 01:29 #

    “MJ, I do not believe your historical examples are accurate.

    With smoking there was a largely successful campaign waged by tobacco companies to “prove” that smoking had no ill health effects.

    Did they have peer-reviewed research published in reputable journals arguing a lack of a link, and these went without rebuttals? Did the scientific community buy it? I’d like to see these studies.”

    I have no idea of the number of peer-reviewed research published in reputable journals. Nor am I going to spend hours going to look for them either. Being “peer-reviewed” does not imply they are correct does it imply that anyone will really take the time to rebut then. Especially if they article in question agrees with what everyone “knows” is the truth.

    Take an example from the software world, it is commonly held that open-source software is higher quality and has less security holes that commercial software because anyone and everyone can an will review the code for flaws. But, except for the largest projects this is just a fallacy. On the small projects there are just a handful of people working on it, if even that.

    “So when Johnson n Johnson helps to fund a study to prove that their product is safe and not related to autism, do you believe that research?

    Not in isolation. But I’m not sure which study you’re referring to.”

    The recent study of rhogam. I don’t really much care if the study is in isolation or whether it agrees with other studies. If a corporation is funding research into its own product chances are it is going to be favorable.

    “I guess a better question is why try it in the first place. GFCF is just a diet, no harm there (I’ve tried it, btw; even Jim Laidler has tried it – have you read his account?) Chelation, on the other hand, is not something people should try “just in case”.”

    The reason to try it in the first place is because there are people who get results from it. I tried GFCF for my children based on medical advise – the doctor in question ran blood tests looking at specific factors in their blood and recommended it. And, for my children, it works.

    “I’ve heard of parents who seem to be stuck with Secretin, because they believe that when they remove it, the child regresses, and when they use it, the child improves. Yet, the science is quite conclussive on Secretin’s ineffectiveness. We’re talking about many independent double-blind placebo-controlled studies, an ideal methodology. They have tried to determine if there are sub-groups of respondents, and so forth. Some of these studies are done by people who wanted to prove Secretin works. There’s no way this could be explained by conflict of interest. Yet, people’s personal experience says otherwise. That’s anecdotal evidence for you.”

    Then here is a question for you. WHY do these people feel this way. If there are as many of them as you imply, and if all of the scientific evidence is as conclusive as you say, why do they keep doing it? They can’t all be a) stupid b) mistaken or c) placebo effect. So I would suggest that either a) they aren’t as numerous as you imply, b) they are all truly stupid or c) that there is something going on there that is not understood.

    Keep in mind that science is not truth, it is our best current guess. And part of the scientific process is keeping an open mind.

    “BTW, there was a preliminary double-blind of GFCF —no effect as I recall.”

    Then I can say, from my own experience, conclusively, for my own children with autism, that this is wrong. If you have identical twins who you both place on the diet at the same time, in the absence of any new therapies, and they both show the same types of improvements in interactivity and attention, I think it is safe to dismiss the placebo effect, assessment bias, and natural development progress. So for that particular treatment, for my specific children, it works. So the only question left there for me is why does it work.

    “No. The reasons are a) placebo effect, b) assessment bias, c) natural developmental progress, and d) any concurrent interventions that do work.”

    And the rise in incidence in autism is just because we are better at seeing all the autism that was there before but in all of the centuries of human existence we never had a name for it before 1960. We could create calculus, chart the movements of planets, but we couldn’t distinguish between something as obviously different as MR and autism.

    Listen, my point is simple. There are people out there who think or know that certain treatments work for their children. Telling these parents that they are wrong because this study said this and that study proved that is just plain silly.

    No study is going to convince me that the GFCF diet didn’t make a difference for my children. That is not the same as saying that it will work for everyone. However, there are people out there who people that these “radical” treatments work for them. How about trying to find out why instead of telling them that they are all wrong.

  23. Joseph August 3, 2007 at 02:02 #

    Take an example from the software world, it is commonly held that open-source software is higher quality and has less security holes that commercial software because anyone and everyone can an will review the code for flaws. But, except for the largest projects this is just a fallacy. On the small projects there are just a handful of people working on it, if even that.

    I’m not sure what this was related to, but that’s an (off)topic I’m rather familiar with. Open source software is in principle better, because it’s open. Anyone can review it. That’s a theoretical reason, but it makes sense. Smaller projects don’t have as many reviewers, but I can tell you from experience that even very small projects (less than 50 downloads/day) do get contributions and fixes. You have to compare apples with apples – really small FOSS projects with really small commercial projects. I’ve seen really small commercial projects that are very buggy. There are small FOSS projects that are very good. Even in very small projects, the developer must have the expectation that someone is going to look at the code. Not so in closed-source ones.

    (Sorry, trying to get back on track…)

    The reason to try it in the first place is because there are people who get results from it. I tried GFCF for my children based on medical advise – the doctor in question ran blood tests looking at specific factors in their blood and recommended it. And, for my children, it works.

    Frankly, the doctor has let himself be persuaded by information on the internet that has no scientific validity. And your claim that it works is one I’d rather disbelieve, for the historical reasons I previously noted.

    Keep in mind that science is not truth, it is our best current guess. And part of the scientific process is keeping an open mind.

    Keeping an open mind is not the same as being gullible and assumming unproven stuff works. Do you have an open mind that GFGC didn’t really work for you kids? It’s a two-way street you know.

    I will accept GFCF works after I see a couple independent double-blind studies to that effect. I promise.

    If you have identical twins who you both place on the diet at the same time, in the absence of any new therapies, and they both show the same types of improvements in interactivity and attention, I think it is safe to dismiss the placebo effect, assessment bias, and natural development progress.

    You have two identical twins on the diet? Even so, if the development of the twins is similar, and I would expect it is, then how can you rule out natural developmental progress, assessment bias or placebo effect? It does not follow.

    You’re basically saying that you’re immune to the kind of self-deception that other parents obviously do have. That you have a “special way of knowing” so to speak.

    Gotta go.

  24. MJ August 3, 2007 at 03:52 #

    “Smaller projects don’t have as many reviewers, but I can tell you from experience that even very small projects (less than 50 downloads/day) do get contributions and fixes.”

    (Sorry this part of off-topic). To point this back to the original analogy, while the small projects may get patches and occasional fixes, it is only from a small group of people of interested people who are probably like-minded to begin with. They don’t get nearly the same level of peer-review that the larger projects get.

    “Frankly, the doctor has let himself be persuaded by information on the internet that has no scientific validity. And your claim that it works is one I’d rather disbelieve, for the historical reasons I previously noted.”

    Actually the doctor in question is basing his advise on his own experience and to an extent his own research. He is popular in my area and has been practicing in the field (pediatrician with a specialty in development disorders) for over 20 years. I have talked to people who have had autistic children seen by him almost ten years ago. He consults/works with the other doctors in the larger institutions in the area and while they don’t especially like him there does seem to be a grudging respect. So I think the short answer is no, he wasn’t persuaded by bad science from the internet. This is one of those cases where reputation counts – he had a good reputation and numerous people to vouch for him.

    “Keeping an open mind is not the same as being gullible and assumming unproven stuff works. Do you have an open mind that GFGC didn’t really work for you kids? It’s a two-way street you know.”

    Since I went into the diet expecting it not to work, I would assume that I was biased against the diet.

    “You have two identical twins on the diet? Even so, if the development of the twins is similar, and I would expect it is, then how can you rule out natural developmental progress, assessment bias or placebo effect? It does not follow.”

    Yes, identical twins. And while their development mirrors each other closely, it is only the genetic parts that are close. Personality wise they are very different. From my experience with them their social skills are different as well. Twin A has almost been more social than twin B. So when you have social skills changing in two children rapidly after removing a dietary element (dairy in this case) it isn’t just natural development, not in non-genetic area like this, and not so closely in parallel. If it were a genetic trait (growth patterns) I would agree with you.

    Assessment bias? If you are closely watching the child for six months and they suddenly go from making eye contact once or twice a day to doing it several times an hour over a month period, and this is across two separate children, what would you think? Also, all four therapists (different agencies) working with children during the time period commented about the differences in attention.

    Placebo effect? How exactly would one cause a placebo effect in non-verbal two year olds? At that point in time they rarely responded to their names let along looked when we talked to them. Since we could not communicate with them we couldn’t cause a placebo effect.

    “You’re basically saying that you’re immune to the kind of self-deception that other parents obviously do have. That you have a “special way of knowing” so to speak.”

    No, I am not immune to self-deception. Nobody is. But pointing out that we can be subject to self-deception is not the same as saying that I am. The argument cannot be that this has no effect therefore I am deceiving myself. How about the argument that this does have some effect (and for other people as well) therefore there is something to this. So the question is why. And the answer isn’t “show me the study”.

  25. Steve D August 3, 2007 at 04:28 #

    MJ –
    Since you asked me specifically, I am going to have to answer by saying I agree with Joseph.
    I have no special knowledge of GFCF, and did not try it with my son. I believe I do understand the rationale behind it, and I believe that the basic reasoning behind it (the “opiod excess” hypothesis, as it were) has been – as would be expected by the scientific method – proposed, tested, re-tested, and rejected.

    Look, MJ, I don’t want to condemn you for trying to do the right thing for your twins. You see a difference after instituting an elimination diet, and that’s great. Hopefully it has given you and your spouse some extra vigor – born of hope and fulfillment of expectation – and that will serve you and your kids well. Raising twins has got to be one of the great challenges of parenthood – raising twins who are autistic certainly does not simplify the process.

    Do me a favor, though, and steer clear of the hardcore stuff. I sometimes worry that GFCF is a “gateway” biomed treatment. In other words, “If this thing works and causes no harm, then my DAN! doc clearly knows what he is talking about and I am going to follow his every word from here on out.” Please avoid this. I am guessing here that within 12 months you will look back and agree that observer bias and natural development will account for everything you are seeing now – only time will tell.
    Just keep an open mind to the science – just as you are aksing me to do – and watch over a few years (as most of us have) as treatment after treatment falls down when put to an actual test.
    Your kids will be fine on their own merits, MJ, don’t forget that. They will be fine. 30 years from now they will be thanking you for being a loving, supportive parent, not for removing wheat products from their diets.

  26. Ms. Clark August 3, 2007 at 09:43 #

    Sorry for the delay. PSC means petitioners steering committee, it’s the lawyers for the parents in the autism omnibus proceedings.

  27. Jennifer August 3, 2007 at 11:33 #

    MJ,

    Can I ask you specifically what testing your doctor did before suggesting the GFCF diet? Did he check for conventional allergies to milk and wheat? Milk and wheat are among the most common allergens. Did he check for lactose intolerance? Did he check for celiac disease?

    If he did check for opioid peptides, you should know that this theory has been totally discredited. The supposed opioid peptides turned out to be absent when a more specific test was used to try to detect them. And they were absent under the same sample preparation conditions described in a European patent covering this area, so if they were there, they should have been found.

    Besides conventional allergy, lactose intolerance and celiac disease, there are many other reasons why your children could benefit from a GFCF diet. I assume that you are now doing much more cooking from scratch, and not eating as much processed foods. You children could be allergic to some component in the processed foods they ate before. They could also be getting better nutrition just because they are eating a larger variety of foods.

  28. bones August 3, 2007 at 12:44 #

    Kev, you’ve made the press yet again…

    http://www.autismvox.com/mercury-rising-in-nature-medicine/

  29. Joseph August 3, 2007 at 13:19 #

    Placebo effect? How exactly would one cause a placebo effect in non-verbal two year olds? At that point in time they rarely responded to their names let along looked when we talked to them. Since we could not communicate with them we couldn’t cause a placebo effect.

    MJ – At this point you’re basically denying the existence of something that has been proven to exist time and time again (I mean placebo effect in autism, or one or more of the other effects). You are saying that these things don’t apply to you because you’ve made such and such observations. That they don’t apply to other evaluators who have seen your kids, even though studies prove professional and non-professional evaluators are prone to self-deception.

    See this.

    To summarize, the fact is that the hypothesis that gluten and casein cause autistic behavior is pulled out of thin air. Anecdotal observations and even case reports are not sufficient to assume that GFCF is anything more than a placebo.
    Maybe it’s a good diet otherwise, I don’t know, but I have no reason whatsoever to believe that it made anyone less autistic.

  30. brook trout August 3, 2007 at 14:40 #

    Hi,

    First, I just wanted to say that this is about the most respectful discourse between someone who believes that biomedical therapies for autism can be beneficial and the skeptics. Kuddos from this lurker – it’s a refreshing change.

    Second, and this is fairly off topic, but I was interested in exploring biomedical interventions a few months ago, and came across doctor Neubrander’s web site. I watched the testimonials, focusing on kids that were close to my daughter’s ages (4.5 or thereabouts).

    The thing that struck me about the testimonials, especially the ones that included videos of the children, was that these were kids very much like my own and many of the anecdotes described developmental histories similar to what I have witnessed with the girls. The only difference is that the parents in the testimonials were attributing the gains to one biomedical intervention or another, while I can only attribute my daughter’s progress to maturity and education, because we’ve done no ‘interventions’ – other than developmental preschool and a small bit of language therapy.

    My girls are not ‘recovered’, though they might be considered to be ‘nearly recovered’ (these are Dr N.’s terms, not mine). I could certainly produce a video and a testimonial as convincing as anything on his sight. It occurred to me – maybe I should, actually?

    I don’t know, maybe it’s a dumb idea, and the privacy concerns are obvious, but, wouldn’t it be nice to have something for newly diagnosed parents – where they could see what progress is possible through simple maturity and education – that progress – dramatic progress – is possible even without heroic interventions? I know that I would have appreciated something like that when I first learned of the girls diagnosis. I also know several parents who have children with similar developmental patterns and would be considered ‘recovered or nearly recovered’ by the standards of Dr. N.’s web site. Do you think that a non-snarky, respectful web site devoted to kids who made marked progress on their own, without their parents spending their life’s savings and without subjecting them to experimental biomedical therapies, would be a useful resource for showing newly diagnosed parents that their children won’t neccessarily ‘fester’ without extreme interventions?

    FWIW – The girls were screaming, writhing, feces smearing, non-communicative – the whole nine yards – prior to age three. They started developing social and language skills around 3.5 and made a ton of progress between that age and 4.5. The girls are nearly five now and are doing well enough that they will be attending regular kindergarten this fall. Their language tests within the normal range (though it can be idiosynchratic and isn’t typical, if you know what I mean, though not obviously atypical to someone not familiar with ASDs) and they are starting to read, write, and their drawing ability is well above what is typical for children their age.

  31. kristina August 3, 2007 at 14:56 #

    Hi brook trout,

    You wrote is it possible that “progress is possible through simple maturity and education – that progress – dramatic progress – is possible even without heroic interventions”—-yes, I think so. I’ve written about this in regard to my son Charlie, now 10—mine is the continuing education.

    http://www.autismvox.com/i-had-to-learn-to-see-who-he-is-an-autism-mothers-continuing-education/

  32. brook trout August 3, 2007 at 15:06 #

    Thanks Kristina – I read your blog, too. I lurk everywhere (you too, Diva 😉

    The comment you quoted is slightly out of context, in that, I was asserting that it is possible, not asking, because like you, I’ve seen it in my own household. Do you get a lot of flak and do you have privacy concerns with your open discussions of such controversial issues on your web site?

    I have an additional question. Do you think that the DAN! doctors are typically forthcoming with this information (that autistic kids do develop with maturity) when consulting with parents of newly diagnosed children or do you think that they often imply that autistic kids typically do not progress on their own, with maturity?

  33. Brian Deer August 3, 2007 at 15:19 #

    Brook: my honest advice to you is that you should seek out a reasonably experienced paediatric neurologist, developmental psychologist, or similar. In other words, find someone who has diagnosed a lot of kids with developmental issues, and has some idea of where they go and what happens to them.

    I can assure you that, if you find one not associated with selling some kind of product, service, conference attendance or whatever, they will tell you that there’s often an amazing amount of good news down the road for a huge number of parents and kids.

    On the quackery issue: if you take all the printed research (including from the late Bernard Rimland, who wasn’t a quack for most of his life), you find that maybe a third of parents giving children various kinds of specious interventions, will report an improvement, irrespective of what that intervention is. In other words, you could sell parents eggs to fry, telling them to rub them into their kids’ hair at bedtime, and about a third can be expected to say they noticed at least a subtle improvement.

    Very high price, high risk, or particularly invasive procedures (eg colonoscopies: the latest fad fraud), can be expected to produce commensurately strong testimonials.

    Bilked of their cash, parents may also predictably become very bitter and angry (as if they weren’t already), and hence ideal to poison into abusing and accusing the many honest and decent doctors and scientists who are doing their best to help.

    But don’t believe me: talk to the folk who’ve seen lots and lots of kids, and aren’t trying to sell you anything.

  34. brook trout August 3, 2007 at 15:33 #

    Thanks Brian Deer,

    I do consult with a mainstream pediatric neuro who has rather positive things to say about the prognosis for my girls (they are twins, btw – I failed to mention that in my first (long) post). She has also sort of steered me away from most biomedical interventions (she thinks fish oils, regular vitamins, healthy diet, etc., are all reasonable things to do) and the testing labs, and she seems to think that the tests will always show “something” to treat.

    Since you are an investigative journalist and since it appears that you, for one, are convinced that these people are often engaging unethically with parents (and considering the desperation that parents sometimes feel when their children are diagnosed with autism – a feeling that I am intimately familiar with) – I’m interested in what you think of my idea of creating my own ‘recovered or nearly recovered kids’ library of testimonials to counterbalance the libraries put forth by those who are seeking to entice parents into their offices?

    I wouldn’t want to go head to head with anyone, but I do sometimes wonder if a set of video testimonials, showing the amazing, curative powers of time and maturity, would be a good counter-balance to the Dr. Neubrander-like web-sites that are obviously designed to play on the hopes of parents (though I won’t go so far as to suggest that the doctors, at least in all cases, are not doing things that they think are helpful – at least some of them).

  35. Steve D August 3, 2007 at 15:45 #

    Brook Trout (and MJ) –
    One of the first blogposts I wrote was about exactly this topic.
    http://onedadsopinion.blogspot.com/2007/04/credit-where-credit-is-due.html

  36. kristina August 3, 2007 at 15:54 #

    brook trout, apologies for quoting out of context—- I liked very much the way you put the notion of progress because of growing up and maturing. Very much! You’ve give me much food for thought and posting on my own blog—very glad that you lurk! It’s great to hear about your daughters doing so well—kindergarten, exciting—–

    When parents write about a child recovering, they often seem to be referring to a quite young child—of 3 or 4 or (like your daughters) 5 years. At 5 years, I was still thinking about mainstreaming for my son—-thinking that his talking would turn into regular sentneces and that he would start reading in the next year. At 10, he is still learning to do all these things, slow step by slow step. In between, a lot happened some of which seemed to “undo” all of the “interventions” we had done with Charlie, from ABA to biomedical.

    On Autism Vox, people regularly ask, or rather strongly advise, me to try this or that supplement with Charlie for this or that behavior; they give lip service (if that) to what education can do. I definitely get aggrieved responses from pointing out the limits of biomedical intervention, and the need to emphasize education (lifelong) most of all—-to the point that this is getting worked into the thesis of my book. As an educator myself, I know that teaching someone can take a long time and a lot of work—and it can really last.

    My sense from reading the writings etc. of DAN doctors and from attending DAN and from talking to parents who do a lot of biomedical interventions is that the possibility of a child doing better as he or she matures is not really brought up. Perhaps on the side, but not as a real possibility, and then the DAN practitioner can cite various other effects of the treatments. Kenneth Bock’s remarks are typical, regarding the ARI “data” on parents’ assessments of treatments being effective (I think Brian Deer refers to this), and about younger children responding better than older children…..I have read parents saying that a child who is older is “more damaged” and therefore even more in need of chelation…..

    http://autismvox.com/dr-bock-on-chelation-safety

  37. Joseph August 3, 2007 at 16:08 #

    I have an additional question. Do you think that the DAN! doctors are typically forthcoming with this information (that autistic kids do develop with maturity) when consulting with parents of newly diagnosed children or do you think that they often imply that autistic kids typically do not progress on their own, with maturity?

    I most certainly would not expect them to. It’s not in their monetary interest.

    Natural developmental progress has been documented, BTW.

    I wouldn’t want to go head to head with anyone, but I do sometimes wonder if a set of video testimonials, showing the amazing, curative powers of time and maturity, would be a good counter-balance to the Dr. Neubrander-like web-sites that are obviously designed to play on the hopes of parents (though I won’t go so far as to suggest that the doctors, at least in all cases, are not doing things that they think are helpful – at least some of them).

    The thing is that you won’t find many parents who arent “curebies” talking about their “cured kids”. However, there are videos of children whose parents practice “acceptance”. See the Posautive group at YouTube, e.g the video “Normal people scare me” which shows lots of kids.

    The parents who are seeking a cure do call their kids “cured” when anyone in their right mind can see they are not.

  38. Brian Deer August 3, 2007 at 16:47 #

    Brook: It’s a tricky one, because the people who ought to be speaking and telling their stories are those with an early history of developmental issues. And, I would guess, that they, for the most part, want to get on with their lives without fear of being stigmatised.

    For me, the rise of “autism” has – at one end of it (not the MR reclassification end) – a lot to do with a technology-driven shift from psychiatry to neurology. Explosion in genetics, fall of Freud… blah, blah. But, if someone with a childhood diagnosis of “autism” evolves into a teenager who is basically somewhat socially clueless, nerdy and/or annoying, does he or she want to go round telling everyone that this behaviour is not intentional, but hard-wired?

    I don’t know the answer to my own question. But for sure, the more parents who channel their energies into hope and mutual support, the better. Compare what you’re thinking about with all the futile hatred and bitterness around the vaccine dead-end, and you probably know you’ll do the right thing one way or another.

  39. MJ August 3, 2007 at 17:54 #

    “MJ – At this point you’re basically denying the existence of something that has been proven to exist time and time again (I mean placebo effect in autism, or one or more of the other effects). You are saying that these things don’t apply to you because you’ve made such and such observations. That they don’t apply to other evaluators who have seen your kids, even though studies prove professional and non-professional evaluators are prone to self-deception.”

    Actually, I do believe that the placebo effect can be very strong. I am simply saying that in this specific case it cannot be a factor. Going from the definition of placebo (lifted from wikipedia) :

    “A placebo is a preparation which is pharmacologically inert but which may have a medical effect based solely on the power of suggestion, a response known as the placebo effect or placebo response”

    I am saying that for I don’t believe that my children would have been susceptible to this because we would have been unable to communicate the suggestion to them. Without the ability to communicate that we expected this diet change to make a difference there can be no suggestion. And without the suggestion, there is no placebo (and just as another note, we never sat done with them and attempted to explain the diet change anyway, they wouldn’t have the understanding at two anyway). The placebo could not effect us as parents, that would an observation bias instead.

    “Maybe it’s a good diet otherwise, I don’t know, but I have no reason whatsoever to believe that it made anyone less autistic.”

    What I am trying to say is that I believe that there is an impact, for some segment of the population. Since you don’t know me I have no expectation that you will believe me.

    Steve D – thanks for the kind words.

    “Do me a favor, though, and steer clear of the hardcore stuff. I sometimes worry that GFCF is a “gateway” biomed treatment. In other words, “If this thing works and causes no harm, then my DAN! doc clearly knows what he is talking about and I am going to follow his every word from here on out.” Please avoid this. I am guessing here that within 12 months you will look back and agree that observer bias and natural development will account for everything you are seeing now – only time will tell.”

    Actually the doctor that is helping with my children is not a DAN doctor. He suggested diet changes, vitamin supplements, and ABA. The approach seems
    to be working so far. So I don’t think I will be going in for more radical treatments when the basics seem to be working so far.

    But given what I have seen so far, I don’t think I will change my mind about the diet making a difference. There is a noticeable change in behavior when one of the twins gets something off diet. But, you are right in that time will tell.

  40. Ms. Clark August 3, 2007 at 18:16 #

    The placebo effect is by proxy. The parents get this huge blast of hope when they decide to start something new. They see any little progress as huge and encourage it. If the same parent hadn’t started something new, the same little progress could happen and the parent would think, “What’s the use? The kid is doomed, or not progressing like I want to see…” Many parents describe that they felt like their child had been cursed by mainstream doctors to a dismal future, then they saw a DAN! doc who appeared as if to have a light radiating all around them… a full body halo if you will…. (sorry) and they go home and try the new, usually injectible, or very difficult to administer, cure and they are now emotionally invested in seeing change.

    My NT kid was kind of a handful at times and there were times when I could see (when I put on a different outlook) that **I** was causing some of the bad behavior in the kid. When I would do some things different, I could see that the kid wasn’t a discipline problem, I was the discipline problem in those cases.

    I’m saying that parental attitude toward the kid is HUGE, and then there’s randomness. The parents who see a big change following (sometimes months later) a new intervention, go on the Internet and brag about it. The ones who see no change, fade out. The quacks make their money on this phenomenon.

    Like they can overcharge and abuse some patients so long as they are really nice and give a free treatment to a couple, because the ones they are nice to will go on the Internet and explain how nice Dr. Badscreet was to THEM.

    The placebo effect by proxy in autism is HUGE, which is why parents have asked to continue with saline injections when they found out their kid had made so many leaps of development on the innactive substance. (In secretin studies.)

  41. Ms. Clark August 3, 2007 at 18:18 #

    Thank you, Brook Trout! Nice to know about the lurkers. 🙂

  42. Joseph August 3, 2007 at 18:27 #

    I am saying that for I don’t believe that my children would have been susceptible to this because we would have been unable to communicate the suggestion to them.

    What Ms. Clark said. But I’m at a loss here. You continue to insist that placebo effects don’t apply in your particular case, even though they apply in general to other parents and children. I’ve never heard anything about the placebo effect not working with non-communicative autistic kids. Placebo effects in autism seem to be strong regardless.

    (Note that when some papers describe “placebo effects” they apparently lump in assessment bias and natural developmental progress).

  43. MJ August 3, 2007 at 19:30 #

    “What Ms. Clark said. But I’m at a loss here. You continue to insist that placebo effects don’t apply in your particular case, even though they apply in general to other parents and children. I’ve never heard anything about the placebo effect not working with non-communicative autistic kids. Placebo effects in autism seem to be strong regardless.”

    My point was that placebo effects – which I am separating from other observational biases (or as you say “assessment bias”) – cannot apply. I can’t give (or in this case not-give) some item to someone else and suggest to myself (and not to them) and have it make a noticeable difference in them (not me). Especially when the item in question does not have the inherent meaning something like medicine does (try and find any 2 year old who really has a grasp on the concept of lack/zero or the chemical composition of food ). Since at this point in time they barely understood general words let alone some abstract contact such as eliminating certain substances to cause an effect… Or the short form is that what you are referring to would be a bias in how I view their actions. And that isn’t a placebo. If you want to argue that I am a biased observer who sees what I want to see, that is a different argument.

    “The placebo effect is by proxy. The parents get this huge blast of hope when they decide to start something new. They see any little progress as huge and encourage it. If the same parent hadn’t started something new, the same little progress could happen and the parent would think, “What’s the use? The kid is doomed, or not progressing like I want to see…” ”

    I agree that parental behavior can make a huge difference in the actions of a child. However, for my specific case, I don’t think happened. After months of encouraging better eye contact and trying to get them to pay more attention, it is not probable that, out of the blue, perfectly correlated with the timing of the diet, two (identical twins) children will both show the same types of improvements. However, again, I don’t really expect you to believe what I am saying having never seen it first hand yourself.

    “Many parents describe that they felt like their child had been cursed by mainstream doctors to a dismal future, then they saw a DAN! doc who appeared as if to have a light radiating all around them… a full body halo if you will…. (sorry) and they go home and try the new, usually injectible, or very difficult to administer, cure and they are now emotionally invested in seeing change.””

    Uhm, at what point did I come across as a lunatic or suggest that I see visions? Cause that wasn’t my intention. I am not talking about seeing visions nor injecting my children with any substances nor even talking about a cure. What I was talking about was my experience with some types of biomedical treatments and relating that I saw a difference. I am not advocating injecting random drug cocktails nor chelation nor psyc drugs. I have no experience with any of those items and therefore not much of an opinion other than to be leery of them.

    Where you look at some treatment and see self-delusional parents I see people who are mostly rational doing what they feel works for them. I can accept that some amount of parents are taken over by a fast one or are suffering from some bias in how they perceive their children which in turn can lead to a positive reinforcement cycle.

    But what I do not believe is that means that by extension every treatment is bad and then all people are suffering from bias. And what I do know from my personal experience (and again, this is just my observations would could be biased, delusional, or maybe possibly accurate) is that some treatments (GFCF diet) do have an effect. One that is not accounted for by studies that I have seen in the area.

    Which comes full circle back to my original point, when reality (for a given value of reality) does not match what is contained in studies, when there is a disconnect between between what we think we know and what happens, then we need to look at these areas and try and see what is really going on. And automatically assuming that one group (or the other) is always wrong because they don’t have studies on their side is kinda silly.

  44. brook trout August 3, 2007 at 19:52 #

    MJ – fwiw – I think you are making good points – both “sides” are. Thanks for keeping the conversation civil. I’m happy that the diet is working for you. Apparently, it really helps some people. I hired a tutor from the local, private autism school (they do ABA/VB) and according to the tutor *everyone* at the school is on the diet. She says that she feels a little sad for some of the families – really, really regimented and almost obsessive with their children’s food for what she perceives as no effect one way or the other. She also says that most of the parents, though, think that the diet is having an effect.

    That said, there is one little boy there, that really, really was helped with dietery interventions. Now, he’s still autistic – still attends the school, etc – but, she said that this was one wild child – very difficult to teach – and with dietery changes, became much better able to focus and learn. She says, no joke – it’s real in his case – not really “curing” him, but for whatever reason, allowing him to become a more compliant student. She’s a non-believer in most of this stuff and deals with the stereotypical bio-med parents every day, but in this one case, she really thinks that the intervention made a difference.

    The way I see it, if it’s harmless and seems to be having an effect there’s no harm in it. That’s why I did fish oil supplements. The problem is, I thought I noticed some subtle effects – better eye contact, better attention, etc – so now I’m stuck with this stuff for life!

    The hard stuff like chelation is indeed scary to me, though. If kids are going through such treatments for placebo benefits, that’s pretty terrible. Not to mention shots, etc – I had to bite my tongue listening to a mother asking for advice on how to get her son to give up fighting her when it’s time for his “shot”. Nice memories for that kid.

  45. Joseph August 3, 2007 at 20:08 #

    Which comes full circle back to my original point, when reality (for a given value of reality) does not match what is contained in studies, when there is a disconnect between between what we think we know and what happens, then we need to look at these areas and try and see what is really going on. And automatically assuming that one group (or the other) is always wrong because they don’t have studies on their side is kinda silly.

    The thing is that while studies can be wrong, you must realize that your own assessment of reality can be wrong too. When it comes to treatments, some are saying that anecdotal accounts are worse than useless, because they mislead. Of course, you don’t accept that your assessments can be wrong, so no further progress can be made in that argument.

    Double-blinds with negative results are starting to appear for GFCF, MB-12 and so on. It’s just a matter of time before you need to reevaluate reality, unless you continue to believe that your ad-hoc observations are much better than a double-blind, placebo-controlled study, the most reliable type of study in medicine. Parents who swore by Secretin had to go through the same thing. And parents do change their minds, e.g. Jim Laidler, and probably some parents posting in this thread.

    And yes, in these debates, honestly, there is one group who is demonstrably and consistently wrong in their claims and predictions. Not only that, there are things that look like fraud (not just methodological problems) in certain “autism papers” and they also happen to come from researchers with that mindset. This counts as part of the scientific debate in my opinion.

  46. Steve D August 3, 2007 at 20:26 #

    A couple of things, MJ:
    “Which comes full circle back to my original point, when reality (for a given value of reality) does not match what is contained in studies, when there is a disconnect between between what we think we know and what happens, then we need to look at these areas and try and see what is really going on.”
    What you are describing here, MJ, is precisely why such things as observer bias and placebo effect have been identified and are given credence. They are known effects. Recall Occam’s Razor – that “one should not increase, beyond what is necessary, the number of entities required to explain anything.”
    The GFCF diet was developed in response to the Opioid Excess theory – a theory which has essentially been disproven. Therefore, any action the GFCF diet was supposed to have taken on autistic behavior is now known to not be “actionable”. So … if the GFCF diet is “working”, is it due to an absolutely unknown biological mechanism that no one has even speculated on at this point? One possiblity occurs to me, but only one: that gut discomfort is caused by ingesting gluten or casein and very young autistic children have trouble communicating their pain and it comes across as “behaviors”.

    So, we have three working theories – the effect is due to bias, the effect is due to pain reduction and resulting behavioral changes, the effect is due to completely unkown biological processes. Applying Occam’s razor, there is no reason to speculate further about the cause as we have at least two viable explanations. Of the two, only the first is backed by empirical evidence as opposed to anecdotal evidence. That tells me that, in the absence of new evidence, supporting the idea that bias accounts for the perceived changes is the wisest choice.

    I have a business associate who absolutely swore by the diet. He has twin boys currently at age 4.5. One is autistic. They did the diet starting at around 28 months and continued until around 48 months. I recall how ecstatic he was at the beginning. I talked to him about some of the things I am saying here now and his response was.” They warned me about people like you – the doubters! You can;t tell me its not working – I see it with my own eyes!” I remember about 6 months in he called me up and explained how his boy had swiped a slice of birthday cake at a party and how he was “bouncing off the walls” for 6 hours after that – more proof the diet was working. I remember that soon after beginning the diet his boy began using some simple language – the diet did that too!
    I talked to him a few weeks ago. In retrospect, he now says he doesn’t think it really did anything at all. And he is still a big-time biomed guy. They do HBOT and B-12 and all kinds of stuff. But he thinks the whole diet thing was just bogus. He said that when they stopped the diet, there were absolutely no changes. When I reminded him of our past conversations, he downplayed that he was ever so enthusiastic about it. Go figure.
    I have also never heard of the diet positively affecting anyone but a small child. Why is this? Where are all the autistic 8-10 year olds who have tried the diet and can tell us how much of a difference it made for them? I am not aware of any.
    Ah well – just some thoughts on the issue.

  47. Ms. Clark August 3, 2007 at 20:48 #

    MJ wrote:
    “Uhm, at what point did I come across as a lunatic or suggest that I see visions? Cause that wasn’t my intention. I am not talking about seeing visions nor injecting my children with any substances nor even talking about a cure. What I was talking about was my experience with some types of biomedical treatments and relating that I saw a difference. I am not advocating injecting random drug cocktails nor chelation nor psyc drugs. I have no experience with any of those items and therefore not much of an opinion other than to be leery of them.

    Where you look at some treatment and see self-delusional parents I see people who are mostly rational doing what they feel works for them. I can accept that some amount of parents are taken over by a fast one or are suffering from some bias in how they perceive their children which in turn can lead to a positive reinforcement cycle.”

    Sorry, I would have thought that it was abundantly clear that the full-body halo thing was metaphorical.

    The biomed doctors **are seen as next-to-god** in the sense that they have privileged information that mere scientist can not access and that they themselves are martyrs and heros of mythical proportions. These creeps can even abuse their patients and maintain these same patients as loyal acolytes.

    It did not say this was true in any one person’s case, I did not say you saw full body haloes on anyone either, so no need to get defensive about how you are not delusional.

    Every last person on earth (with the possible exclusion of some autistic people…) deludes him or herself. The way people convince themselves that something is true is totally amazing. It’s amazing that we can agree on any objective reality when you find out how two different people see the presumable exact same event, because they were both, presumably occupying the same area but not have the same vantage point, exactly, each unable to see exactly what the other sees. Read a college textbook on social psych for some insight into these phenomena.

    There’s a famous experiment where people watch a group of young people on a video playing basketball. A person in a gorrilla suit walks through the middle of the group and pauses and then walks on. If the audience members are told to watch who has the ball a lot of them will be unable to report that they saw anything unusual. They do not see the phony gorilla. It’s as if they are blind to phony gorillas at that moment.

    You have no idea what the odds are that your children were about to change anyway. If there were 100 parents all about to put their kids on the GFCF diet on a particular day, a certain number of them will report great changes, the most will report no great change, and some will report that their kids got worse.

    What I recommend is that you do a double blind study. Get some snacks that have gluten and casein in them, and some snacks that are gluten and casein free. color the bags that have gluten and casein one color. Ask someone to give your kid one bag a day while you and your wife aren’t looking and to record the color of bag that the kid got each day and not tell you or your wife. Do it for three months, maybe put 2 bags of gluten and casein containing treats in with 58 bags of GFCF treats. If at the end of 60 days you can say exactly which days the kids got the gluten and casein treats, you would have a little objective evidence, and you’d have the possibility of not having to pursue the diet if it turned out you were wrong.

    There may be a real benefit for some kids going on the diet. So far the reason seems to be that some autistic kids have celiac or lactose intolerance. Very pedestrian stuff. No arcane explanation about “leaky guts” and opiods that aren’t true as it turns out, are needed. So far there are some, maybe most of the parents who are putting their kids on painfully restrictive diets for NO reason other than to feel that they are at LEAST doing SOMETHING. It can make them feel very special and superior, too. Which is not a slam against you, MJ. It’s just a fact. That’s one effect of special restrictive diets, they make the diets followers feel very special and set apart.

  48. brook trout August 3, 2007 at 21:25 #

    If the DAN! doctors are prescribing treatments that have not been proven to be safe and effective treatments for autism, how do they escape the scrutiny of whatever ethical organization overseas licenses physicians? Isn’t there, like, someone overseeing these people – ensuring that the MDs are delivering treatments to their patients that are considered to be actually useful? Or, do they only draw trouble when they hurt someone or when patients start complaining? If there is large scale, intentionally fraud that is damaging special needs children and their parents, etc – that’s, um, pretty bad – why hasn’t some investigative news organization done any investigative journalism of this group?

  49. brook trout August 3, 2007 at 21:26 #

    in the US, that is… I realize that Wakefield has been the target of investigative journalism in the UK.

  50. Joseph August 3, 2007 at 23:23 #

    I’m not sure, but the US seems to be quite permissive compared to the UK. There have been a couple inquiries over Wakefield’s doings, but nothing of the sort regarding the Geiers, for example.

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