autism, demons and disordered thinking

Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.

 1. The Biomedical Approach is not a cohesive whole

Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.

Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.

The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.

Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.

2. Recovery Does Not Mean Cure

Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.

Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.”  The kid has to act normal whether he is or he isn’t.

3. Parents intervene because we have to do something.

A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.

Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.

These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children – the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.

Kerry charged over Tariq’s death

Roy Kerry has finally been charged with involuntary manslaughter, endangering the welfare of a child and reckless endangerment two years after Abubakar “Tariq” Nadama died as a result of treatment he received at Kerry’s clinic in Portersville, Pennsylvania. Kerry also faces an enquiry into his competency from the state medical authorities and is being sued by Tariq’s parents. Amazingly, on the day that charges were filed against him, Kerry was unavailable for comment because he was too busy treating patients!  

Kerry gave Tariq an IV push of disodium EDTA (Endrate). This was wrong in so many ways.

  • Endrate is a chelating agent that draws calcium out of the body and can cause heart failure.
  • It’s only indications are for the emergency treatment of hypercalcemia and for the control of ventricular arrhythmias associated with digitalis toxicity.
  • Even then it should only ever be administered as a slow infusion, never as a rapid push.
  • The label recommends a 3 per cent saline solution. Kerry used a 50 per cent solution.

Much has been made of the fact that Kerry may have inadvertently used the wrong type of EDTA. There is a “safer” version, calcium disodium EDTA (Versenate) which, according to the FDA is indicated for lead poisoning (acute and chronic) and lead encephalopathy. Even this carries dangers.

Calcium Disodium Versenate

Generic Name: edetate calcium disodium
Dosage Form: Injection, usp

WARNINGS: Calcium Disodium Versenate is capable of producing toxic effects which can be fatal. Lead encephalopathy is relatively rare in adults, but occurs more often in pediatric patients in whom it may be incipient and thus overlooked. The mortality rate in pediatric patients has been high. Patients with lead encephalopathy and cerebral edema may experience a lethal increase in intracranial pressure following, intravenous infusion; the intramuscular route is preferred for these patients. In cases where the intravenous route is necessary, avoid rapid infusion. The dosage schedule should be followed and at no time should the recommended daily dose be exceeded.

 The International Herald Tribune reports that

Kerry has argued that the boy’s symptoms improved after the first two treatments. He acknowledged there may have been a “miscommunication” about which medication to give the boy during the third treatment, but said that did not amount to gross negligence.

This suggests that maybe Kerry used the “right” version of EDTA on the first two occassions and his assistant administered the fatal dose of the “wrong EDTA in his absence. But this contradicts these statements in the official record of the Pennsylvania State Board of Medicine.

72. Respondent stated to Inspector Reiser that disodium EDTA is the only form of EDTA that he stocks in his office.

73. Respondent admits that CaNa2EDTA is available but he has never used this agent.

All three treatments used the same medication, Endrate. By the time of the third treatment Tariq’s young body could no longer withstand the depletion of calcium from his system and he died. Would Tariq have survived if Kerry had used Versenate? Perhaps. But Versenate is indicated for lead poisoning and Tariq did not have lead poisoning according to the same official record of the Pennsylvania State Board of Medicine 

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.

45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.

46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.

47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.

48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non­provoked conditions.”

49. Tariq had a minimal elevation of his lead level.

50. The result of Tariq’s urine test also revealed a marked depletion in the iron present in Tariq’s body.

51. Controlled studies have shown a correlation between learning problems and low iron levels in children.

52. Respondent subjected Tariq to a second round of Disodium EDTA chelation on August 10, 2005.

53. In Tariq’s medical chart for the date August 10, 2005, Respondent writes, “The last IV EDTA produced 15mcg of lead level per gram of Creatinine. We really expected a higher output. Recommend repeating the IV again. Use the 1 gram of EDTA … on the next IV we’ll do another collection … IV given in the right antecubital fossa with no difficulty over about a 5-­minute span. He gets a little sleepy afterwards and then he recovers in about 5 minutes. Recheck in 2 weeks.”

54. Theresa Bicker, a medical assistant employed by Respondent, stated she administered the Disodium EDTA On the second treatment on August 10, 2005.

55. The Respondent ordered his second treatment.

56. Respondent was in attendance during the August 10, 2005 round of Disodium EDTA chelation.

57. The August 10, 2005 chelation treatment was administered by a five to ten minute IV push.

58. On August 23, 2005, a third and final round of Disodium EDTA chelation therapy was administered to Tariq.

59. Theresa Bicker administered the IV Disodium EDTA to Tariq.

60. Bicker requested Doctor Mark Lewis, D.O.) to come to the treatment room to help restrain Tariq for the IV push of Disodium EDTA.

61. Respondent was not present when Tariq received chelation on August 23, 2005.

62. Theresa Bicker administered the Disodium EDTA pursuant to Respondent’s orders.

There is no evidence for misinformation about medication here. Indeed there is strong evidence for continuity of treatment over the three sessions. Even with the evidence that Tariq’s lead levels were normal Kerry persisted in chelating the poor child.  Kerry stated in his notes that “we really expected a higher output [ … ] Recheck in 2 weeks.” I would expect a doctor to check the levels before initiating a further round of treatment, especially as Tariq found the procedure so distressing that he had to be strapped to a papoose board and restrained by 4 adults during treatment.

FOOTNOTE

In the immediate aftermath of this tragic affair DAN! did their best to distance themselves from any involvement. Kerry was not a DAN! practitionr. His treatment was not part of the DAN! protocol. But once the fuss died own Kerry was admitted onto the list of DAN! Healthcare Practitioners. Furthermore, DAN! have never acknowledged their part in Tariq’s treatment. Tariq was referred to Kerry by DAN! practitioner Anju Usman.

 21. The July 22, 2005 entry in Tariq’s medical chart reads, “We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.

She presumably is the “physician who previously treated Tariq, [and] recommended treatment with CaNa2EDTA as recently as June 2005.”  So a DAN! practitioner used all her dark arts to cure Tariq of aluminium poisoning. When that did not work she sent him to ACAM practitioner, Kerry for IV treatment with Versenate, even though Endrate is ACAM’s drug of choice.  Kerry went against Usman’s advice on three separate occasions.

Was Usman following up on her patient?

Should she have known that Kerry was using Endrate instead of Versenate?

When did Usman’s duty of care end towards Tariq?

Why isn’t she in the dock with Kerry?

Maybe we will find when this case comes to trial and Usman has to take the witness stand. 

New Scientist and the Autism Omnibus

New Scientist has published an interesting commentary on the Autism Omnibus  proceedings that are taking place in the United States Court of Federal Claims.  They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question  over whether or not she is the victim of vaccine damage.

New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.

Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ‘big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.

Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.

One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner  Harris, a reporter with the New York Times observed that:

It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.

I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.

It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.

The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.

And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.

He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.

So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.

Last time out he did not do so well. According to his biography on Wikipedia:

Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case[12] regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.

Amongst the criticisms in the judge’s decisions,[13] Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”

The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.

New Scientist also mentions Robert Nataf, a French chemist.

One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).

While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.

If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.

Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.

New Scientist concludes:

While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?

Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”

Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.

Questions for Dr. Anju Usman

Treating Autism is hosting the two day Autism-Biomedical Conference at the Bournemouth International Centre with funding from the National Lottery this weekend. (Friday 9th  and Saturday 10th February)

Regular readers of this blog will not be surprised to learn that I have misgivings about this. Basically the DAN! protocol is being promoted in a big way in England for the first time. This follows on from the success of Action Against Autism in setting up a DAN! clinic in Scotland under the leadership of Lorene Amet following their biomed conference in Edinburgh in October 2005.

I have three major objections to DAN!

  1. They accept as fact that there is an epidemic of autism caused by environmental toxins.
  2. They claim that by using chelation to remove these toxins children can be recovered from autism.
  3. Any charlatan or quack can become a DAN! practitioner merely by doing an eight hour training session at one of their conferences. Children have been sexually abused, injured and killed by DAN! practitioners whose details are still up on the DAN! website with no warnings about their professional misconduct.

I am particularly surprised that Anju Usman is such a prominent speaker at this conference.  Dr Usman was the DAN! practitioner treating Abu Bakar Tariq Nadama after his mother took him from Britain to America seeking  a cure for his autism.  Dr Usman referred him on to Dr Kerry. Tariq subsequently died as a result of the treatment prescribed by Kerry. According to Kerry’s case notes, published by the Pennsylvania State Medical Board as part of their case against him,

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Later on  Pennsylvania State Medical Board reports that Usman actually recommended calcium disodium EDTA.

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

There are two forms of EDTA. Disodium EDTA is used for the emergency treatment of hypercalcemia and in control of ventricular arrhythmias associated with digitalis toxicity.  Tariq did not have either of these illnesses. Calcium disodium EDTA can be used to treat aluminum poisoning but is more commonly used for lead poisoning. The calcium is added because disodium EDTA on its own also binds to calcium. Tariq died because the disodium EDTA depleted his body levels of calcium to such an extent that his heart stopped.

The Pennsylvania State Medical Board also notes that Tariq had low levels of iron. And Usman had referred Tariq to Kerry because of high aluminum levels. Deferoxamine is often used to treat aluminum poisoning. It also binds to iron. If Usman was using that to treat Tariq it would explain his low levels of iron. It does not explain why she sent him to Kerry, a doctor who never ever used calcium disodium EDTA. He only ever used disodium EDTA

Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know

  1. Did she use Deferoxamine on Tariq? Was she monitoring his iron levels? 
  2. Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
  3. If so, would he not have told her that he never used it and did not have it in stock?
  4. Did she understand at the time how different the two forms of EDTA are? 
  5. Did she object when Kerry was granted DAN! status AFTER he killed Tariq?

We know that Kerry is unfit to practise medicine. Until questions about her role in the death of Tariq are settled there are serious doubts about Dr Usman. Will she answer these questions in Bournemouth? Will they even be asked? for Tariq’s sake, and for the sake of all the potential Tariqs, I hope so.

Biomedical interventions in autism – a reply

The Winter 2006 edition of Communication, the quarterly magazine of the National Autistic Society contains an opinion piece, “Biomedical Interventions in Autism” by Lorene Amet. Unless otherwise indicated all quotes are from Amet’s article.

She claims that,

“A previously rare childhood developmental condition seems to have become common in ten years! This does not seem to be a matter of changing definitions, ascertainment bias, or case-finding methods. What this may tell us is that the role of environmental factors in autism is greater than previously envisaged.”

But according to a National Autistic Society leaflet, (NAS 1997)

“The best estimates of the total prevalence of autistic spectrum disorders are those based on the Camberwell and Gothenburg studies, because these focused on the whole spectrum and not just specific sub-groups.”

The Camberwell study (Wing and Gould 1979) found a prevalence of 20 in 10000 for autistic spectrum disorders amongst children with IQ less than 70. The Gothenburg study (Ehlers and Gillberg 1993) found a prevalence of 71 in 10000 for autistic spectrum disorders among school children with an IQ greater than 70. These studies were published in 1979 and 1993 respectively. So, when every newspaper and magazine report seems to include the obligatory statistic that, “1 child in 166 is now affected by autism,” we should remember that back in 1993 some of the leading autism experts in Europe were arguing that 1 in 110 children were affected then. One of their most trenchant critics, Eric Fombonne (1997) carried out his own epidemiological studies (Chakrabarti and Fombonne 2001, 2005)) which went a long way to confirming Wing and Gillberg’s position.

I fail to see the point of Amet’s remark “the explosion of autism diagnosis throughout the developed world continues to throw an uncomfortable light on the traditionalists within the autism community,” when, in fact, the explosion only serves to confirm what the traditionalists established during the 1990s, that when autism is understood as a broad spectrum disorder it is more prevalent than was suggested by previous studies that focused on the narrow portion of that spectrum first described by Kanner (1943).

Whether there has also been an increase in actual numbers alongside the increase in diagnosis is unknown. Fombonne (2003) argues that the few incidence studies we have are inadequate to the task. He also points to the extreme weakness of the evidence in support of a new environmental influence that might explain any secular incidence in autism in recent years. Amet is equally tentative about possible causes.

“32 reports … suggest that it [heavy metal toxicity] could be implicated.” There is a “possible association with autism” for “diet and food sensitivity; profound vitamin, minerals and fatty acid deficiencies; some abnormalities in purine levels and essential amino acid levels; as well as some cases with hormonal or cholesterol metabolism abnormalities.”

The one study she cites goes to show how tentative those links are. The Vargas paper (2005) is inaccurately reported as a study of “11 post-mortem brain tissues of children with autism.” These ‘children’ ranged in age from 5 to 44 years. If there is active neuroinflammation in subjects born in the 1960s it is unlikely that a recent, epidemic inducing toxin is responsible. And, far from proposing a “key pathological role in autism” as suggested by Amet, senior author, Carlos A. Pardo-Villamizar cautiously points out in a press release (Science Blog 2004) that, “it is not yet clear whether [the immune activation] is destructive or beneficial or both.” On the question of treatments he says that “much more research would be needed to establish the validity of this approach.”

Amet is not so tentative about possible treatments. Apparently, ‘could be’ and “possible association” provide sufficient proof to justify the treatment protocol on offer at her Edinburgh clinic. She agrees “that there is at present insufficient published evidence for the efficacy of the biomedical approach beyond anecdotal reports.” In plain English that means that there is no published evidence apart from anecdotal reports.

Amet believes it would be unethical to carry out proper research before experimenting on children because,

the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years.

So studies on mice, monkeys and in vitro are good enough to suggest treatments but those treatments cannot be subject to clinical trials. This is quackery pure and simple. Amet argues that,

“It is only through thorough examination and biomedical testing that the individual child’s symptoms can be understood and treatments tailored accordingly.”

Autism is presently only diagnosable on the basis of observable behaviours. Amet would like to be able to diagnose on the basis of biomedical indicators. But here she suggests that it is already possible to match autistic symptoms to biological markers.

Once these biomedical problems are identified they will be treated with dietary and pharmaceutical interventions that will also cure the autistic symptoms. Biomedical interventions are often used in conjunction with applied behavioural analysis on the premise that the child needs to be re-educated in what it is to be normal while they are being recovered from their autism.

Quite aside from the arrogance that presumes such knowledge of the biochemical predictors of behaviour and competence to manipulate them successfully, there is the complete denial of any autonomy for the child in determining who they are. The child is a tabula rasa with no opportunity for influencing the outcome of their own development and education.

While every child is different,

“children with autism have a set of characteristic clinical complaints. And these are very well-substantiated in the current peer-reviewed medical and scientific literature.”

It would help if Amet could provide a list of these “characteristic clinical complaints” and some reference to the relevant literature. In contrast to Amet’s claim it is my understanding that the clinical picture in autism is heterogeneous. Common clinical characteristics have so far proved elusive. I remember David Amaral of the MIND Institute at UC Davis, speaking at the International Autism Conference held by the NAS in London 2005 showing a slide that said,

“Autism is an enormously heterogeneous disorder. It is likely to have a variety of etiologies and ultimately to be considered distinct variants or phenotypes of the same disorder (Autism type A, Autism type B etc.)

To date, research on autism has been too fragmentary to allow determination of the biomedical and behavioural characteristics that define different phenotypes of autism spectrum disorder.”(Amaral 2005)

Amet also claims that,

“The biomedical approach to autism is currently endorsed by over 500 medical doctors, throughout the world in a total of 23 countries. What these practitioners advocate is that autism is treatable. They uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.”

Amet is wrong and she knows it. The five hundred medical doctors do not exist. She is referring to the DAN list of registered practitioners who have agreed to the DAN protocol for treating autism. Amet know that not all of these practitioners are medical doctors because she, a research scientist, is on the list. So is Ken Aitken, a psychologist and associate of Amet’s in the Autism Treatment Trust. Neither is qualified to call themselves an MD. The DAN list also includes naturopaths, homeopaths and other ‘alternative’ therapists.

Many of the DAN practitioners are medical doctors. But that is no guarantee of quality. Last year Abubakar Tariq Nadama died while being given chelation therapy. He was referred to Dr Kerry by DAN practitioner Dr Usman who recommended treatment with disodium EDTA with a dose of 50mg per kilo when the recommended dose is 40mg per kilo. Usman referred Abubakar to Kerry because “He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.” Abubakar was five years old and autistic. His mother took him to America because she was persuaded that autism is treatable by the biomedical interventions championed by Amet.

At the time much was made of the fact that Kerry was not a DAN doctor. He is now. After he killed Abubakar, Kerry was admitted to a DAN conference, completed an eight hour intensive training programme and joined the “500 medical doctors, throughout the world” whom Amet looks to for endorsement.

Those “500 medical doctors, throughout the world” also include a Dr. Schwartz in California who is not allowed to examine boys without a chaperone because of previous misdemeanours. The Medical Board of California (2006) is currently trying to permanently revoke his licence to practise medicine after he persistently broke their injunction not to examine boys without a chaperone.

He chose to get round this problem by inventing a novel way to “uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.” He interviews their mothers instead. And, without ever seeing the boys, orders a series of tests and prescribes treatments for them.

This is the company that Amet keeps. These are a few of the medical doctors who endorse her biomedical approach to autism. I am surprised that the NAS would publish an article that is so weak on logic, so riddled with factual errors and, above all, so ethically compromised. It is no more than a thinly veiled advertisement for her clinic, a commercial for autism treatments that are not supported by the literature rather than a serious discussion of that literature.

References

Amaral, D. (2005) A Multidisiciplinary Biomedical Approach to Autism Research: The Autism Phenome Project. Presentation to the NAS International Conference September 2005
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Chakrabarti, S. Fombonne, E. (2005) Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence Am J Psychiatry 2005; 162 pp 1133–1141

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Kanner, L (1943) Autistic Disturbances of Affective Contact. Nervous Child 1943; 2: pp 217-250.

Medical Board of California (2006) Accusation and petition to revoke probation
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NAS (1997) How many people have autistic spectrum disorders? NAS Factsheet
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Abubakar Tariq Nadama – More Quackery Revealed

Death of an Autistic Child: Chelation without Indication.

This is the title of an important commentary written by Dr Kimball Atwood about the recent decision by the Pennsylvania State Board of Medicine to take action against Roy Kerry, the doctor who administered the fatal dose of disodium EDTA to Abubakar Tariq Nadama. I am especially grateful to Dr Atwood for providing a link to the original order made against Roy Kerry.

At the time of Abubakar’s death supporters of chelation as an autism treatment made much of the fact that Kerry used the “wrong” sort of EDTA (Endrate versus Versenate). The Autism Research Institute (ARI) was also quite adamant that chelation was a safe treatment because it did not add toxins to the system, it removed them. It also pointed out that its DAN! protocol for autism treatment recommended transdermal and oral chelators as opposed to the intravenous method used by Roy Kerry.

Dr Atwood points out that according to the Pensylvania Board’s factual allegations

“Respondent stated…that Disodium EDTA is the only formula of EDTA he stocks in his office”; he “admits that CaNa2EDTA is available but that he has never used this agent.”

So there is no question that he used the wrong chelator by mistake. As I argued in my previous post, Roy Kerry was using his chelation agent of choice. He knew what he was doing and even then he did it wrong.

The instructions that come with Endrate are crystal clear. The dose for children is 1 gram per 55lbs of body weight. Kerry injected 1 gram of Endrate into a child weighing only 42lbs.

You have to dilute it properly – no more than a three per cent solution. According to Kerry, We diluted it 1:1 with saline. That is a fifty percent solution.

You never give an IV push of Endrate to children. The label recommends a minimum of three hours for an infusion. Kerry gave an IV push lasting 5 minutes.

From Abubakar’s chart dated July 22nd 2005

Started the IV with saline. After a good blood flow in the right antecubital fossa with 3 other assistants and his mother controlling him and the papoose board. Had a good IV return flow. We then introduced the EDTA. Checked return flows frequently during administration. Gave the IV over approx 5 minutes. Then rinsed with saline. He had no difficulty toleration (sic) it.

No difficulty tolerating it with 4 adults controlling him and a papoose board! ml5401.jpg

DAN! Doctor shares the blame

The Pennsylvania Board document sheds light on ARI/DAN’s invovement in this tragedy. It quotes from Abubakar’s patient chart, written by Roy Kerry,

But we have been in communication with Dr Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.

  • Dr Usman is a DAN! practitioner. She sent Abubakar to Kerry for chelation with Endrate, “the only formula of EDTA he (Kerry) stocks,” to chelate, not lead, not mercury, but aluminum!
  • Moreover it was Usman who recommended a dose of 50mg per kilo when the recommended dose is 40mg per kilo.
  • Kerry, quite rightly is under the hammer for killing a child. But Usman sent the child to him and prescribed the treatment. When will she be punished?

Meanwhile DAN! has further mired itself by admitting Kerry to a DAN! conference after he killed Abubakar, and, on completion of its eight hour, intensive medical training, registering him as a DAN! practitioner!! Just in case you think this is an unfortunate oversight on their part, please check out the case of Dr Schwartz, the chelationist with the Holistic Resource Center in Agoura Hills, California who is also DAN! certified and also uses Endrate, the drug that killed Abubakar.

We are not dealing with a medical error here. Kerry did not use the wrong chelator. There is no right chelator for autism. Chelation is quackery, plain and simple, and it extends far beyond the practise of Roy Kerry. DAN! is the largest organization that promotes “alternative” therapies for autism. Its uncritical endorsement of chelation places it firmly on the side of quackery. DAN! protocols and DAN! practitioners are as culpable as Roy Kerry for the death of Abubakar Tariq Nadama.

Abubakar Tariq Nadama – killed by autism quackery

On Tuesday 23rd August 2005 Abubakar Tariq Nadama died while being given an IV push of disodium EDTA in the office of Dr. Roy Eugene Kerry in Portersville, Pennsylvania.

Abubakar was five years old and autistic. His death prompted me to write a discussion document on biomedical interventions which I sent to the National Autistic Society. The document was published in the NAS magazine “Communication” and is the earliest entry on this blog.

The circumstances surrounding Abubakar’s death were the source of some confusion. According to Mike Fitzpatrick the Times reported that his parents had taken him to America to be chelated for mercury poisoning. The Pittsburgh Post-Gazette reported that

Authorities said Kerry’s office reported that the child was receiving an IV treatment for lead poisoning when he went into cardiac arrest.

Wade Rankin tried to clear up the confusion when he commented on Random John’s blog:

Many autistic children have tested high for lead toxicity, leading to the hypothesis (and forgive me for oversimplifying this) that their mercury-damaged immune systems are even more at risk for lead exposure than a typical child. In any event, very positive results (i.e., alleviation of some problematic symptoms of autism) have been reported after chelation for lead as well as mercury. It is generally believed that Abubakar Nadama was one such autistic child, and it now appears that the real problem was the doctor’s unexplained failure to use the correct form of EDTA.

Whether or not you agree with this hypothesis a follow up report in the Post-Gazette seemed to confirm that Kerry had indeed administered the wrong drug.

One of the nation’s foremost experts in chelation therapy said she has determined “without a doubt” that it was medical error, and not the therapy itself, that led to the death of a 5-year-old boy who was receiving it as a treatment for autism.

Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention, said yesterday that Abubakar Tariq Nadama died Aug. 23 in his Butler County doctor’s office because he was given the wrong chelation agent.

“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”

Just for the record Dr Brown’s use of word order is misleading here. The trade name for Disodium EDTA that killed Abubakar is Endrate. Versinate refers to the Calcium Disodium EDTA. I would hate for anyone else to repeat Kerry’s so-called ‘mistake.’

Essentially, Tariq died from low blood calcium. Without enough calcium — a metal — in the blood, the heart stops beating. Dr. Brown said the Disodium EDTA the child was given as a chelation agent “acted as a claw that pulled too much calcium” from his blood.

“The blood calcium level was below 5 [milligrams]. That’s an emergency event,” she said.

Despite claims at the time of Abubakar’s death that nobody had died as a result of chelation since the 1950s the Post Gazette continues:

Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.

Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.

The correct chelation agent — Calcium Disodium EDTA — would not have pulled the calcium from the bloodstream, she said.

The report concludes:

She said there have been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used … because it may induce fatal hypocalcemia, low calcium and tetany.”

“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr. Brown said.

But was it just a medical error? A number of people, all better qualified than I, have commented critically on Dr Brown’s remarks. See for example The CDC Flubs It, Another Perspective on Abubakar Tariq Nadama, Death by Chelation Revisited and Misattributing CAM Errors.

Now that Kerry is finally facing disciplinary action for professional misconduct (no criminal charges have been made to my knowledge) he is still being charged with medical error for using the wrong drug. I agree with Orac up to a point when he says:

No, no, no. The use of chelation therapy to “treat” autism that leads to serious complications should be sufficient cause in and of itself for action. The formulation used isn’t the issue (although certainly Kerry was reckless and incompetent in choosing disodium EDTA). The use of a non-evidence-based, ineffective, and potentially dangerous treatment is. Couple that with Dr. Kerry’s apparent cluelessness in giving the “wrong” chelation agent and you have a recipe for disaster. It’s hard not to conclude either that Dr. Kerry is a quack using potentially dangerous and unproven treatments for autism

And this is the point.

or that he’s an incompetent doctor who, in trying to use a relatively safe but unproven and almost certainly ineffective treatment for autism, screwed it up and used the wrong chelator, leading to the death of a child.

A recent article on Autism Street makes it quite clear that Kerry did not “screw up.” As a member of ACAM, the American College for Advancement in Medicine, Kerry chose Disodium EDTA, the drug that killed Abubakar. It was not an error because Disodium EDTA, aka Endrate, is the only drug clearly identified and recognized in the chelation protocols published by ACAM. Thanks to Autism Diva who published a letter from Dr Gary Gordon, one of the founders of ACAM, who supplied the Endrate to Kerry, which said:

I have only checked to see if they ( Edit: that is Kerry and his partners in crime) have ever purchased Calcium EDTA

and found the answer was

?no??

I hope the Pennsylvania authorities read Autism, A Killer App., And A Drug Of Choice – Guest Blogger and I suggest you all read it as well. And please visit Bartholomew Cubbin’s blog. His commentary is a very good introduction to a complex subject.