Gluten free and Casein free (GF/CF) diets have been suggested for autism for many years. A survey of parent members of the National Autistic Society in 2005 found that even though only 7.5% cited gastro-intestinal (GI) difficulties as an issue for their child around half had used special diets of one sort or another. Between 10 and 20 percent reported improvements following the diet and around 10 percent wanted more research into diets and other biomedical interventions. Although most of the GI issues were reported in children with autistic disorder parents of children with Aspergers Syndrome supported the use of special diets in comparable numbers. In line with Paul Shattock’s oft quoted remark that nobody ever died of a gluten deficiency parents have often regard the GF/CF diet as essentially benign. It may be expensive and time consuming to implement but it cannot do any harm and may help with behaviour. So where is the harm in trying it?
The most obvious source of harm is the nutritional effect of limiting the type of foods offered to a growing child. Foods that contain gluten and casein also contain essential nutrients that may not be present in the GF/CF alternatives. Two years ago the National Institutes of Health reported on problems with bone density in autistic boys
The researchers believe that boys with autism and ASD are at risk for poor bone development for a number of reasons. These factors are lack of exercise, a reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets that exclude casein, a protein found in milk and milk products. Dairy products provide a significant source of calcium and vitamin D. Casein-free diets are a controversial treatment thought by some to lessen the symptoms of autism.
A recent study due to be presented at IMFAR this year went to great lengths to ensure that children on the GF/CF diet did not miss out on essential nutrients.
The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein.
They also tried to control for the effects of different treatments and therapies that might confound the results of a dietary trial by ensuring that all the subjects received the same early intensive behavioural intervention during the trial. Twenty two children aged between thirty and sixtysix months were enrolled in the trial but only fourteen completed it. One withdrew after proving positive for celiac disease. Another had an iron deficiency and the rest were unable to adhere to all the study requirements.
The trial lasted for eighteen weeks. A month into the trial each child received a cleverly disguised snack containing either gluten, casein, a combination of both or neither and went on to receive three of each type of snack in random order at one week intervals. The snacks were disguised so that neither the researchers, the children, their parents nor their teachers could identify them. The result was that there was no difference to sleep patterns, bowel movements, language or behaviour in any of the children.
The authors acknowledge the obvious weaknesses in this study. it had a small sample size and did not include children with GI disorders. However it was very well designed and provides a model for future studies. Another study, Absence of urinary opioid peptides in children with autism (Cass et al 2008) found no evidence of increased urinary peptides i autistic children compared to non-autistic controls. This is in line with Hunter et al (2003).
All this suggests that unless your child has an obvious GI disorder you should not even consider a GF/CF diet. Even if there are GI problems it is highly unlikely that urinary peptides are to blame. And if the peptides are not there why use the diet? The commercial labs that claim to routinely detect these peptides in samples from autistic children stand in marked contrast to the university and hospital labs that have failed to detect these peptides even when using very sensitive testing procedures. The study by Cass et al found evidence that suggested the presence of peptides in 25 out of 68 samples from children with an ASD. However that was not the whole story.
By HPLC analysis alone, 25 urine samples from the autism/Asperger group were selected as showing peaks in approximately the correct locations to be opioid peptides. For all 25, MALDI-TOF MS analysis of the relevant fraction found no instances of ions of m/z corresponding to opioid peptides. These results indicate that the peaks observed on the HPLC trace were not opioid peptides.
Then we have the evidence from America. Ibrahim et al 2009 found no evidence of increased GI disease in autistic subjects. A recent review published by the American Association of Pediatrics found no evidence base for an increase in GI disorders or for the effectiveness of dietary interventions in autism.
This does not mean that there is no connection between autism and GI disorders. Ibrahim et al conclude that
As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.
And the AAP review stressed that some so-called autistic behaviours may be indicative of gastro-intestinal distress and these children should not have these behavioural symptoms disregarded because they are autistic. As I wrote in my very first blog post
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. [...]
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Anyone with an autism diagnosis should be given a full medical work up in case there are any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions.
I would only add that “biomedical” in this context refers to evidence based medicine delivered by qualified professionals in a proper medical facility and not to the store front clinics of the alternative therapy business.
May 20th, 2010
Posted by
Mike |
Uncategorized, biomedical interventions |
6 comments
There was a time when the names Wakefield and Krigsman were synonymous with Thoughtful House. Wakefield was director of research. Krigsman was director of the gastroenterology clinic.
Dr. Wakefield is one of the founders of Thoughtful House. He has been an integral part of the organization since its inception, particularly in the research program.
That is what it used to say on the Thoughtful House website. Now it says nothing at all. The press release containing that statement has been removed, though it is still in Google’s cache. In fact all the press releases at Thoughtful House have been removed. That page is now “under construction.” So are the publications page and the page for research associates.
The links to conference presentations by Wakefield and Krigsman are broken. Krigsman you may recall left Thoughtful House around the same time as Wakefield. Krigsman’s biography and the gastroenterology FAQ at Thoughtful House are gone. If you Google them the link takes you to this one page website The announcement of Krigsman’s “new” research that is supposed to vindicate Wakefield is also gone from the website.
It is as if they are becoming non-persons, edited out of the record in a manner reminiscent of the old Soviet Union. So has there been a coup? I believe that Wakefield was forced out. After the GMC ruling his position was untenable. Krigsman’s departure was probably driven by business considerations to do with health insurance and billing procedures. But it does seem to have happened at an opportune moment for Thoughtful House
Their rising star is Bryan Jepson. His book is featured on the front page. He is the medical director at Thoughtful House. He has strong links to Defeat Autism Now. He seems to represent a return to traditional biomedical interventions for autism. These may be unproven but at least they are not disproven like the MMR hypothesis. Healing the gut and repairing the immune system via diet and supplements and normalizing behaviour via ABA may lack a sound evidence base but they are not yet discredited. Mainstream researchers continue to investigate them. Parents of autistic children who might be wary of anti-vaccine rhetoric and worried about invasive procedures and the dangers of chelation will consider other biomedical treatments.
That is not to say that Thoughtful House have rejected the anti-vaccine position completely. Laura Hewitson, their lead researcher now Wakefield has gone, is a plaintiff in the Omnibus Autism Proceedings. Her research appears tailored to prove her case before the vaccine court. But Thoughtful House is not going to be at the forefront of any anti-vaccine movement.
They will happily concede to parents beliefs in regard to vaccines while selling them diets, supplements and ABA programes. But the goalposts have been shifted away from vaccines to broader, vaguer environmental toxins within which vaccines are a special case affecting a minority of genetically susceptible children and not the driving force behind the so-called epidemic.
March 12th, 2010
Posted by
Mike |
Andrew Wakefield, MMR, Uncategorized, biomedical interventions |
6 comments
Next month marks the fourth anniversary of this blog which began life on Blogger on 13th November 2005. This was a reprint of an article criticizing biological interventions for autism that first appeared in the National Autistic Society magazine, Communication. When I migrated to WordPress I took all my posts with me and an occasional old post picks up a comment. Today there was a new comment on my very first post from Adam, the parent of a three year old autistic child.
I have an autistic son (3 years old) and was a real sceptic until I joined some forums where parents swore that their kids got better after some form of biomedical intervention. We finally decided to to go ahead with certain interventions we thought were relatively harmless and recently started giving our son supplements including Omega 3, Probiotic, Vitamin B and C. Altogether it cost us about £100.
It was well worth it as we suddenly had improved eye contact and he started saying words meaningfully. Yesterday we went to a party and my son was really well behaved and played along with other kids, which was totally amazing. I have to mention that he goes to an enhanced nursery. However, the improvement happened right after we started the biomedical intervention that we are believers now.
When I visited Adam’s blog I discovered that he is also a fan of the Son Rise program and has attended one of Raun Kaufman’s lectures.
Let me be the first to congratulate Adam on the progress his son is making. But why give all the credit to a handful of vitamins? His son is attending an enhanced nursery. I assume that means they make special provision for his son to help with language, behaviour and social skills. If he is three he will not have been there for long. Perhaps dad is seeing improvements now because he has had time to settle down and the enhancements are working.
The reference to Kaufman is also interesting. I have had reason to criticize Son Rise in the past, mainly for its marketing methods. But it is based on the principle of acceptance and working with the child on his own terms. It does not treat autism as a result of environmental toxins that can be cured by biomedical interventions.
But Adam read all these glowing testimonials and started on the vitamins and the kid got better so it must be the vitamins. This illustrates perfectly why we need science based interventions for autism. I have visited the forums that Adam mentions. Some of these parents have been trying all manner of supplements for years to little effect. Others report modest success. Some claim to have recovered their child. Was it the pills or something else that worked? We have no way of knowing based on anecdotal evidence and testimonials.
I have read similar tales that go the other way. People stopped the pills or put the dairy back into the diet and nothing happened. The kid was OK. These are equally useless in disproving the claims of the biomedical movement. Anecdotal evidence is useful for raising questions but not for providing answers. For that we need science. And so far most of the science that is coming in does not support the biomedical position.
If we take diet as an example, this is probably the most popular intervention. The theory is that problems in the gut make it hard to digest proteins in wheat and dairy products. They are broken down into peptides that pass through the damaged gut wall and enter the blood stream. From there they cross the blood brain barrier and create havoc with certain neurotransmitters resulting in the behaviours we normally associate with autism.
This is known as the opioid excess theory of autism because Jaak Panksepp, an American neuroscientist observed parallels between the behaviour of animals addicted to opiates and autistic children. His hypothesis was that endorphins in the brains of autistic children were having the same effect as hard drugs in the brains of laboratory animals. Then Reichelt, a biochemist in Norway claimed that he had detected peptides in the urine of autistic people that had this opioid effect. This was taken as evidence that these peptides were also entering the blood en route for the brain.
I used to have a lot of sympathy for this idea but Hunter et al (2003) using much more sensitive methods of analysis has failed to find any association between urinary peptides and autism. Neither did Cass et al (2008).
But people still believe in the diet. If it does help then it cannot be because of the opioid excess theory. That is no longer viable. So we need to know why. If it does not make a difference then we need to know that as well. The diet can be expensive and time consuming. If parents are going to invest time and money in it they want some answers.
Unfortunately Professor Ann Le Couteur at Newcastle University has been unable to obtain funding for her CANDAA study into diet. Now she is carrying out a survey of parents and professionals which may help her in her quest. I cannot help but think that if the anti-vaccine crowd had not taken over the biomedical movement funding agencies would look more kindly on studies like this.
October 5th, 2009
Posted by
Mike |
biomedical interventions, science |
16 comments
Those who wish to ague that autism is a public health disaster frequently cite the lifetime cost of autism as yet another reason why government should take autism seriously and devote huge sums to research into prevention and cure. The major citation is usually the estimated figure of $3.2 million as a lifetime cost per person from Michael Ganz, Assistant Professor of Society, Human Development, and Health at Harvard School of Public Health.
I have questioned the assumptions behind Ganz’s work in a previous post. But in one area at least it seems that he may have underestimated the costs. Ganz puts the lifetime costs of biomedical treatment or, as he describes it, complementary and alternative medicine at $2704. This may be a reasonable figure averaged out over the entire autistic population but for those parents who do take the biomedical route the costs can be much higher.
Over on Autism Watch Stephen Barratt has posted an article in which he advises parents to “Be Wary of CARE Clinics and the Center for Autistic Spectrum Disorders (CASD)” They offer a bewildering array of tests and treatments that are totally unproven and are billing insurance companies for up to $40,000 a person. For comparison Ganz estimates the total lifetime costs for physician and dental costs for an autistic person at $42,259.
These outrageous charges for quack treatments are not part of the cost of autism. They are part of the cost to families and to society as a whole of the campaign to paint autism as an unprecedented health disaster. All the talk of epidemics and autism as a devastating disorder has, on the one hand led mainstream science to direct a multi-million dollar research budget into seeking means of preventing autism by finding its marker genes and devising ante-natal tests. On the other hand, parents of autistic children are vulnerable to to the sort of expensive quackery provided by CARE/CASD.
Meanwhile parents struggle to find basic services like speech and language therapy and respite care. Schools struggle to honour IEPs on limited budgets and autistic adults either cannot find services or are told they are ineligible. Instead of spending money on autism let us spend it on autistic people themselves.
January 18th, 2009
Posted by
Mike |
Quackery, biomedical interventions |
4 comments
The latest issue of Communication, the members magazine of the National Autistic Society contains a two page article by Dr. Mike Fitzpatrick, an edited excerpt from his forthcoming book, Defeating autism, a damaging delusion, which is due out in October. Dr Fitzpatrick’s son was diagnosed with autism in 1994. His earlier book, MMR and Autism, was a vigorous defence of the vaccine combined with a thorough reply to Andrew Wakefield and a sustained rebuke of the medical establishment whose own ham-fisted response enabled Wakefield and his supporters to dominate the media coverage.
The resulting drop in vaccination rates has allowed measles to become endemic in the United Kingdom once more. Meanwhile autism prevalence has continued to increase to the point were the NAS estimate of a prevalence rate of 1 in 112, which attracted so much criticism in the 1990s when it was first suggested, is now increasingly supported by data from epidemiological studies in the UK.
In MMR and Autism Dr Fitzpatrick briefly discusses what he calls “Alternative Autism,” (chapter 6 pp 77 -100) which roughly equates to the biomedical movement. In his latest book this alternative autism takes centre stage. I detected at least four themes in the excerpt in Comunication.
- These alternative therapies do not work.
- The science behind them is flawed.
- Some of these treatments are potentially dangerous.
- The real damage is in the way that the quest to “defeat autism” demonizes autism, and by extension, people with autism are similarly demonized.
I do not think that Dr Fitzpatrick is a recruit to the ranks of Neurodiversity just yet. But in the absence of the science based medical interventions to which he aspires, he is clear that
The most damaging aspect of the crusade to ‘defeat autism’ is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook sometimes project a negative view of autism as a destructive disease process. They can portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. Parents often describe their own predicament in terms of grief and loss and as one of unremitting battle against the corrosive impact of autism on their child, their marriage and their wider family. This implicitly disparages and dehumanizes people with autism. It is not surprising that such a negative attitude towards autism is sometimes expressed in a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease. (Communication:Autumn 2008 p15)
I fully expect a number of parents to be outraged by this. They will take it to mean that Dr Fitzpatrick is suggesting they do not love their children. I take it to mean that, for some parents who adopt the unorthodox biomedical outlook, their love will be measured by the lengths they are willing to go to in order to provide these biomedical treatments. I have seen this expressed as “Love the child. Hate the autism.” And your love for your child is often presented as a function of how much you are willing to sacrifice in order to express your hate for autism.
Dr Fitzpatrick offers a more positive alternative.
My aim is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead ends offered by the perspective of ‘defeating autism.’ (Communication:Autumn 2008 p15)
This reminds me of another article in Communication by Rita Jordan last winter which argues for a distinction between autistic spectrum disorder and autistic spectrum condition. Professor Jordan’s argument is that if we use the term autistic spectrum for both the condition and the disorder, in the first case we should be arguing for accommodations to take account of a recognised difference, while in the second case we have a disorder that requires interventions. In reality most people on the autistic spectrum probably require both accommodations and interventions. The balance will doubtless change during their lifespan. Professor Jordan asks
“So what would this mean for diagnosis? It would still be important to diagnose the disordered group and this could still be a medical category, but based not on differences from the norm (typical) but on the basis of disruption of development and functioning. Those who just have a different processing style would still need a way of having this identified to enable autism-friendly environments and approaches and to put them (and their parents) in touch with similar others. But this need not be a medical ‘diagnosis’ but a psychological assessment. Both groups need to have their common humanity respected and so, even with the best intentions, we should avoid characterising non-typical functioning children as ‘non-human.’
‘Defeating autism’ would then seem absurd: no-one would want to reduce the diversity of human nature and so deny the contribution of so many unique individuals.” (Communication: Winter 2007 p12)
Dr Fitzpatrick and Professor Jordan are tackling this question from different perspectives and their positions are quite different. But in contrast to the “unorthodox biomedical outlook” I can find common ground with both their positions and can envisage a time when we all three might be in broad agreement. I see no such prospect with proponents of the “unorthodox biomedical outlook.”
That seems the most important point to me. Some of us want to know and others think they know already. I would like to think that Dr Fitzpatrick, Professor Jordan and myself are all open to persuasion. And part of that openness has to include the possibility that we are wrong and the biomedders are right. I see little evidence to suggest a similar attitude in the biomed camp.
August 29th, 2008
Posted by
Mike |
Communication, DAN!, Uncategorized, biomedical interventions, science |
17 comments
PLACEBO EFFECT
By happy coincidence I have just read a very interesting article on the placebo effect in New Scientist and listened to two radio broadcasts on the same subject from Ben Goldacre. There are also discussions of both broadcasts here and here on Ben’s Badscience blog.
Placebo effect is often used disparagingly with reference to the anecdotal evidence for alternative and complementary therapies. There is a common misconception that the placebo effect is not real. Patients are deluding themselves. What they really need is a dose of allopathic medicine with those expensive molecules created by big pharma preciely targeting the locus of the disease in the body and eliminating it.
Both the article and the broadcasts challenge that idea. As Ben says in one of the broadcasts, if we support evidence based medicine we have to admit that according to the evidence the placebo effect is real. He gives some striking examples:
- Patients improving with their pacemakers switched off.
- Branded painkillers proving more effective than unbranded ones.
- Placebo proving as effective as some medications for irritable bowel syndrome.
- People who knew they were on placebo reporting benefits.
- Some people even managed to experience negative side effects of a drug while on placebo.
Ben makes the point that it is not the pink pill (though pink placebo pills do work differently to blue placebo pills) or the faux acupuncture or the placebo pain control cream that is working. Within the total context - the white coat, stethoscope, diplomas on the wall, intangibles like bedside manner etc - the pill may seem to be effective. But the placebo effect is more to do with the total doctor/patient relationship. The placebo effect works with real medicines as well as placebos. Patients who knew they were receiving morphine reported less pain than patients receiving the same dose without being told.
The challenge now is to fully understand the complexities of the placebo effect and use it effectively and ethically to improve patient care and patient outcomes. We may have something to learn from the alternative therapists. The ones who truly believe in what they are doing are probably very good at making full use of the placebo effect even if they do not fully understand it.
OUR EXPERIENCE
We experienced this with a homeopath and a practitioner of the Bowen Technique, a light touch massage. At the time we were having a hard time. Our son was getting nothing from health or education services and was severely stressed, as were we all. The benefits we got from our sessions were simple. They listened. They were sympathetic. They were gentle with us. They were such nice people. They really wanted to help us. They really believed they could help us and we wanted to believe. I tried some of the therapy myself but there was something not quite right about the guy doing the massage. We developed a sense of unease and the placebo effect diminished.
When I discussed the apparent benefits with our son’s paediatric psychiatrist he dismissed it airily as the power of suggestion. When my son had a meltdown in his office on his first visit and had to be physically restrained I could not help wishing that this psychiatrist could calm somebody with the power of suggestion.
AUTISM AND PLACEBO
The placebo effect does not mean that alternative therapies work in the sense that their theoretical underpinnings are correct. But it is such a powerful effect that it may be working through the therapy in some cases even if the therapy per se does not work. If we accept that one of the major causes of challenging behaviour in autistic children is the mismatch between their social understanding and the expectations of family, friends or school then an obvious way to help them is to revise our expectations. Electing for any type of therapy effectively does that.
BEHAVIOURAL EXAMPLE
This has happened many times in my career. A pupil is acting inappropriately. Attempts to control the behaviour are not working. We stop and carry out a functional behavioural analysis. We think we have stopped intervening while we collect baseline data. But from the child’s point of view we have changed our intervention. And so his behaviour changes. And we have changed ourselves as well. If I am charting incidents I feel in control. I am no longer challenged by the situation. I no longer feel challenged by the child. I no longer provoke the behaviour I am seeking to control.
BIOMEDICAL EXAMPLE
I go to my alternative practitioner who tells me my child has gut problems that are causing his behaviour. We need a special diet and some supplements. It is not his fault. It is my fault for feeding him the wrong stuff. So I stop blaming him for his behaviour. I cut the kid some slack while waiting for the diet to kick in. I change and my child responds. I credit the diet and the doctor who prescribed it.
I am not sure if those two examples are strictly speaking the placebo effect. But they fit the general pattern of a total context having the power to explain what is happening more fully than the obvious recourse to the pink pill, the chart or the change of diet.
Ben’s second programme concludes with a doctor arguing that the power of placebo works best in those conditions were there is not a specific disease pathway amenable to a pharmaceutical magic bullet. Autism is very much like that. Yet the alternative therapists who infest our community claim precisely the opposite. They believe they know the precise biomedical pathways that lead to autistic behaviour and claim to have targeted interventions for each one. Mainstream medicine cannot claim much in the way of moral high ground in relation to autism. But its acknowledged ignorance and impotence in the face of this enigmatic condition is surely preferable to such hubris?
August 26th, 2008
Posted by
Mike |
Quackery, biomedical interventions, science |
6 comments
Over on Left Brain Right Brain Kev has just blogged this article in the Mail. The article starts in typical tabloid style:
There is little hope given to parents of children with autism. Mainstream medicine offers no explanation for the cause of this life-long learning disability, thought to affect one in 100, and there are no effective treatments.Perhaps the most cruel characteristic of the condition, which impairs communication development and ability to relate to others, is that children often develop normally until about two years of age, when they suddenly ‘regress’, becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.
Many never take part in mainstream education and some require full-time care, even as adults.
In the absence of solutions, desperate parents are increasingly turning to the world of alternative medicine in their search for a cure.
Or does it? There are the usual buzzwords - hope, desperate, cruel. But autism is described as a life-long learning disability, not strictly true but better than the usual this devastating disease. And the headline
The great autism rip-off …
How a huge industry feeds on parents desperate to cure their children
suggests more substance than I have come to expect from a paper that has done more than most to promote Andy Wakefield and the MMR scare over autism. Now they are investigating the claims of alternative therapists who sell dubious treatments to parents on the back of the media hype about vaccines and autism. The world is turning.
Journalist, Barney Calman posed as a parent and contacted 5 different Defeat Autism Now (DAN) practitioners. All charged serious money just to talk to the parent on their own and suggested an expensive battery of tests without ever seeing the child. All were happy to discuss a variety of treatment options and claimed great success while pointing out that their therapies might not work for a minority of children.
This is the beauty of quackery. You pay money for tests that indicate treatment. But they do not indicate if the treatment will work. So the parent moves on to the next practitioner in the hope of finding the one therapy that will work for their child.
First up was a former GP, David O’Connell who took £440 in consultation fees without ever seeing the child and recommended a barrage of tests on blood, stool and urine costing a further £1546. His recommended treatment is Secretin! He claims that previous studies were flawed. What, even this one? As I wrote elsewhere
The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.
O’Connell goes on to state that
I’ve not published my findings in peer reviewed journals because I am unwilling to submit children to double blind trials.
But he will submit them to unproven treatments like Secretin at £450 monthly injection and immune globulin at £550. These quotes are revealing.
‘The only limiting factor is money.’
[...]‘The more injections a child has, the better the result,’ he says.
‘Autism can be a life sentence if you do nothing about it. And the sooner you start treatment, the more chance it will work.’
Parents used to be blamed for causing their child’s autism in the bad old days of Bettleheim’s refrigerator mothers. Now they are encouraged to blame themselves and then pay large sums for unproven and potentially harmful treatments in order to ease their guilt.
Next up was
Dr Asha Rekha Chagarlamudi, a locum GP who runs ‘The Autism Clinic’ one day a week from her home, a semi-detached house on a private estate in Bromley, South-East London.
She recommended IV chelation (Remember Abubakar Tariq Nadama?) and Hyperbaric Oxygen Therapy. (HBOT) She does not seem quite as mercenary as O’Donnell but I was a little perturbed because she is the medical advisor to the Autism Treatment Trust in Edinburgh. That is an eight hour drive away, which is not very convenient if the non-medical Dr Amet in Edinburgh needs treatment advice. Like Dr Chagarlamudi Dr Amet has an autistic child herself and was featured in this blog.
Dr Amet makes the striking claim that her series of blood and urine tests (£480) will give a complete picture of your child’s health and what has caused his autism. Her follow up consultation (£400) will discuss the test results and devise a treatment plan consisting of a special diet and supplements contains no mention of the IV chelation and HBOT recommended by her medical advisor 440 miles away, down in Kent, which is probably for the best.
Surprisingly, the cheapest therapist is based in that bastion of privilege and private medicine, Harley Street. Dr Damien Downing will do an initial consultation, urine and blood tests, follow up and seven rounds of transdermal chelation for just under £700. The only drawback is that transdermal chelators do not work
[S]ome enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.
Calman also went to Dublin to meet
Dr Gabriel Stewart, a specialist in chelation therapy for adults, who tells me he tries to dissuade parents from giving their autistic children intravenous infusions ‘not because it’s dangerous, but because it isn’t effective in clearing mercury from the blood’. Consequently, Archie was not suitable for treatment.
He also warns that some ‘DAN! doctors’ are less than reputable.
‘All you need to do is attend one conference in the US and you can say you’re a DAN! doctor - and many of them aren’t medically trained.’
All this is true. It is also true that Dr Stewart is also a DAN doctor. While his refusal to use IV chelation on children is commendable his website reveals that he is a member of ACAM, whose ambiguities over the use of EDTA were exposed at the time of Tariq Nadama’s death. And he has bought into the entire DAN protocols for treating autism. The scientific bases for these protocols are being seriously challenged by expert witnesses in the Omnibus Autism Proceeedings that are taking place in the USA. See this example where the expert testimony of Dr Dean Jones is discussed.
All in all, an excellent piece of journalism from Mr Calman, marred only by a factual error in a sidebar on What is Autism. The prevalence figure of one in a hundred refers to the entire autistic spectrum. So called classic autism with associated learning difficulties is closer to 1 in 500.
June 1st, 2008
Posted by
Mike |
Autism, DAN!, Quackery, biomedical interventions, chelation, mercury, vaccines |
7 comments
I have written in the past about the case of Abubakar Tariq Nadama here, here and here. In fact my first ever blog post in November 2005 began as an internal discussion document that I wrote for the National Autistic Society [NAS] following Abubakar’s death. It was subsequently published in Communication, the magazine for members of the NAS and roundly condemned by advocates for biomedical interventions in autism. I republished it on Blogger and invited my critics to debate with me there. 145 posts and 1,746 comments later the debate continues.
This week I was shocked to learn that criminal charges against the doctor responsible for treating Abubakar, Roy Kerry MD, had been dropped because the defense had presented new evidence. Science Blogger Orac’s analysis concurred with my feelings that the confusion engendered by misleading statements from the CDC in response to the killing of Abubakar created enough potential for reaonable doubt for the defence attorneys to persuade the District Attorney to drop the case.
But what new evidence could contradict the undisputed facts of a case in which a child was chelated by a physician who had never chelated a child before using a chelation agent with a black box warning that specifically warned against using an IV push to administer the medication? Kerry used the IV push on Abubakar twice and sanctioned the third and ultimately fatal IV push that was administered by a junior employee while Kerry was absent from his clinic.
Just to remind readers.
Abubakar was 5 years old. He was a lively, healthy autistic child. His mother moved with him to the USA to seek treatment for his autism. His father, a doctor who specializes in respiratory diseases, remained in England. Abubakar was seen by Dr Anju Usman, a Defeat Autism Now practitioner, who referred him to Kerry because of persistently elevated levels of aluminium. Kerry used an off label medication to treat him and he died.This is the part that really confuses me.
- I have yet to see any persuasive scientific evidence about a connection between aluminium and autism.
- Even if there were a connection between autism and aluminium there is no clinical indication that any formulation of EDTA, either Kerry’s drug of choice - Disodium EDTA [Endrate] or the allegedly “safe” alternative - Calcium Disodium EDTA [Versenate] has a therapeutic effect on aluminium levels.
- So why did Usman refer Abubakar to Kerry and why did Kerry use Endrate to treat him, not for elevated levels of aluminium, but for lead poisoning? And this despite the fact that Kerry’s own lab tests showed that Abubakar did not have a problem with lead.
The basis for my questions is public knowledge. You can read it in the Order to Show Cause issued against Kerry by the Pennsylvania State Board of Medicine. But you will not find any answers to those questions. I had hoped that a court case would provide answers. The principle players, under oath, would have to tell the truth. So why is there no court case? I began by agreeing with Orac. The CDC flubbed it with their waffle about the wrong chelator, as if there had ever been a right chelator for autism.
But rereading the blogs I came across this entry from Kristina Chew in which she provided a source for the Nadama family’s decision to sue Kerry, his medical practice and his medical supplier, Apothecure. As well as condemning Kerry and his clinic, the legal notice also indicts Apothecure for providing misleading information about the Endrate they supplied to Kerry and accuses them of causing Abubakar’s death.
32. The inaccurate, unsound and dangerous information communicated by the ApothéCure Defendants to Dr. Kerry and Dr. Lewis as described in paragraph 30 was a direct and substantial cause in Dr. Kerry’s commission of the negligent acts described in paragraph 24 and 25. Therefore the ApothéCure Defendants are legally responsible for the conduct described in paragraph 24 and 25.
So is Kerry relying on the incompetence and negligence of his supplier to escape blame for his own incompetence and negligence in the case of Nabubakar Tariq Nadama? Are Pennsylvania going to pursue Apothecure through the courts? Perhaps they should consult with their opposite numbers in Oregon. It seems that Apothecure have a track record of incompetence and negligence in the manufacture and supply of drugs.
There is another possibility. Kerry’s attorney said
He said the defense was prepared to present expert witnesses who would testify the damage that occurred to Nadama’s heart, leading to a lack of oxygen to his brain and his death, was caused by something else, six to eight hours before the treatment at Kerry’s office.
Witnesses would have testified that the chemical used — disodium ethylene diamine tetraacetic acid — was appropriate, and there was nothing wrong with Kerry using an intravenous push instead of a slower I.V. drip to administer it.
So what made this child so sick in the hours before his final, fatal chelation episode at the hands of Kerry? And why was it not apparent and sufficient to postpone the fatal IV push. And who are the bojos prepared to give expert testimony in contradiction of the recommendation of the FDA regarding IV push with EDTA? Do tell, soon, please.
Footnote:
This is the letter I wrote to the reporter who broke the story of Kerry’s escape.
Dear Brian
I have just read your report on the dropping of all charges against Roy Kerry in the case of Abubakar Tariq Nadama. I have blogged extensively on this case as has science blogger Orac, whose most recent post, http://scienceblogs.com/insolence/2008/05/no_justice_for_abubakar_tariq_nadama.php#more is in complete accord with my feelings on this matter. My amazement at the decision to drop all charges is only surpassed by my amazement at Kerry’s announcement that he wants to continue in medicine!
Kerry was a member of the American College for Advancement in Medicine. He was listed as a member in 2006, a year after Abubakar’s death. http://www.acam.org/dr_search/index.php?q=Kerry&field=lname&submitted=1 A search today yielded no results. ACAM is an alternative therapy outfit that promotes chelation for heart disease using disodium EDTA aka Endrate because it binds to calcium. The theory is that if heart disease results in calcium plaques forming blockages the Endrate will remove the calcium and destroy the plaques. This is quackery pure and simple and has no basis in science.
Kerry gave Endrate to Abubakar three times in a concentrated IV push, ignoring the black box warnings on the label to only give in a slow dilute infusion. Abubakar showed no indication of any of the diseases for which Endrate is licenced. They used the push instead of the infusion because Abubakar was a lively 5 year old who could not be held still for three hours. 4 adults held him down for 5 minutes strapped to a papoose board for the IV push. By the third treatment his body was so depleted of calcium that his heart stopped.
Although Kerry is no longer listed by ACAM he is on a list of Defeat Autism Now practitioners. http://www.autismwebsite.com/practitioners/us/Roy_Kerry,_M.D..htm DAN supports chelation as a treatment for autism. At the time of Abubakar’s death they made great play of the fact that they supported transdermal and oral chelation and not the IV chelation practised by Kerry. The following year he was admitted to their list after attending a one day conference for clinical training and agreeing to abide by their protocols. DAN’s treatment protocols also have no basis in evidence based medicine. And Kerry’s listing indicates that he will continue to offer IV chelation to autistic children. Will he switch from Endrate to Versenate, the formulation of EDTA that does not pull calcium out of young bodies? Will he use a slow infusion or will he revert to a rapid IV push on children forcibly restrained as in the case of Abubakar? Does DAN know or even care?
If another child should die it is not only Roy Kerry who should appear in the dock.
Mike Stanton
May 9th, 2008
Posted by
Mike |
Quackery in Autism, biomedical interventions, chelation |
2 comments
My article on biomedical interventions for autism in Communication has provoked a largely hostile response. Some people disagreed with me. That is fine. I welcome debate. Others thought the NAS was wrong to publish my article at all.
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time if they feel so strongly.
I do support medical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be properly tested first.
I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism.
I have not read any research that persuades me that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that has not been tested and approved for therapeutic use with young children. It is used to treat heavy metal poisoning. It is not a treatment for autism.
I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.
Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.
November 30th, 2005
Posted by
Mike |
National Autistic Society, Quackery, biomedical interventions, chelation, parents |
no comments
The key features of the ‘biomedical movement’ are that it is parent-driven and that parental concerns are dismissed by mainstream professionals. Those professionals who do take up the parents’ case often gain iconic status among parents. They are ignored by the mainstream scientific community at first, but expect to be vindicated eventually.
It is parents who have been instrumental in changing attitudes to autism over the last 50 years. Autism is not caused by bad parenting, is not a form of mental illness and our children are not ineducable. We won these battles and we often find ourselves fighting similar battles today with professionals, who think they know autism but do not know our children.
This explains why so many of us are prepared to give the benefit of the doubt to parents who support biomedical interventions. But it is not a coherent movement.
The ‘Mercury Moms’ argue that their child’s autistic symptoms are not ‘real’ autism but are the result of an environmental insult whose effects are reversible; they have been poisoned by the mercury content of the vaccines, routinely administered in the USA.
IMMUNE SYSTEM
Others accept that their child is autistic, but argue that whatever caused their child’s genetic predisposition to autism has given them a weakened immune system that cannot cope with environmental insults, such as vaccines, infections or allergies.
There are those that view autism as a metabolic disorder that will be alleviated by special diets and/or vitamin supplements. Then there are attempts to synthesize all these diverse and sometimes contradictory ideas into an overarching theory.
A number of features of the biomedical movement also persuade me that it is not comparable to the autism movement as a whole.
Those of us in the wider autism movement tend to be open to new ideas but sceptical as well. People in the biomedical camp often seem to have made up their minds and are just looking for the evidence to back up their opinions.
There is debate and differences are freely discussed at our conferences and in our journals. Biomedical conferences seem less open to criticism. Every point of view is equally valid except the one that suggests they might be wrong.
Biomedical research is funded by parent organizations. When independent research contradicts them they claim that it is tainted by government influence or the drug companies.
Our pioneers made sacrifices to prove their point. Many biomedical experts profit by selling their own therapies to the grateful parents whose prejudices are confirmed by their research. To his credit, Paul Shattock, Director of the Autism Research Unit, has not pursued any commercial advantage from his work on biomedical causes of autism.
But let’s not dismiss the whole shebang as being about gullible parents who are ripped off by snake oil merchants. Some children do regress after an apparently normal early life. Autistic people do experience atypical responses to all sorts of environmental inputs, including medications. Autistic children do contract painful gut disorders. Some autistic people do benefit from restricted diets.
REAL SYMPTOMS
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Andrew Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment.
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Anyone with an autism diagnosis should be given a full medical work up in case there any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions. To subject children to treatment of questionable benefit and unquantifiable risk, because of a hypothetical possibility that their autism might have some connection with a biomedical disorder, is unacceptable. As such, chelation should be roundly condemned as a therapeutic intervention.
Autism can be a devastating blow to individuals and their families. But it can be positive as well. The NAS approach is all about maximizing the positives, minimizing the negatives and standing up for the welfare of autistic individuals, above all else. Most of the time we can stand together with parents on this. But, when it does come to a choice between the wishes of some parents and the welfare of autistic people we must have the courage to put autistic people first.
Mike Stanton – Communication Vol 39, No 3, pp36 - 37
November 13th, 2005
Posted by
Mike |
National Autistic Society, Quackery, biomedical interventions, chelation, parents |
9 comments
