Defeating Autism

A Damaging Delusion

Michael Fitzpatrick

• Publisher: Routledge
• Year: 2008
• Print ISBN:
  9780415449816
• eBook ISBN:
  9781134058976
• Topic: Psychology
• Subtopic: Alternative & Complementary Medicine
• Index: Psychology

Autism: disease, disorder or difference?

What causes autism – genes or environment?

Can biomedical treatments cure autism, and are they safe?

An increased public awareness of autism has resulted in a rising trend of diagnoses, creating the impression of an 'epidemic'. Many parents of children newly diagnosed with autism have been impressed by plausible theories blaming vaccines and other environmental causes. Many have also been captivated by claims that 'biomedical' treatments – including special diets and supplements, detoxification and medications – can achieve dramatic results.

In Defeating Autism, Michael Fitzpatrick, a family doctor and father of a son with autism, questions the scientific basis of environmental explanations of autism and exposes the incoherence of unorthodox 'biomedical' theories and therapies. This book reveals that these therapies are far from pioneering interventions and they remain unsubstantiated by scientific authorities. Campaigns promising to 'defeat or cure autism now' have attracted much support among parents struggling with their difficult children. But the crusade against autism risks dehumanising and stigmatising those who are identified as autistic and their families. This compelling book is essential reading for students and professionals working in the field of autism, as well as academics concerned with the public understanding of science and the treatment of scientific and medical controversies in the media.

1 Introduction

When quackery kills

In the summer of 2005, Abubakar Tariq Nadama, a five-year-old boy with autism, was taken by his mother Marwa from his home in the south-west of England to the USA for biomedical treatment. He was seen by Dr Anju Usman, a family practitioner and director of the True Health Medical Center in Naperville, Illinois Center in Naperville, Illinois. He was subsequently seen by Dr Roy Kerry, a retired ear, nose and throat surgeon who offered chelation therapy at the Advanced Integrative Medicine Center, in Portersville, Pennsylvania. Medical records released in the course of the subsequent inquiry report the sequence of events. (Kane and Linn 2005; Barrett 2006; see also Citizens for Responsible Care and Research, www.circare.org/).

22 July 2005:

‘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 10 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. We diluted it 1:1 with saline. Started the IV with saline. After a good blood flow in the right antecubital fossa with 3 other assistants and mother controlling him and the papoose board. Had a good IV return flow. We then introduced the EDTA. Checked return flow frequently during administration. Gave the IV over approx. 5 minutes. Then rinsed with saline. He had no difficulty tolerating it. No infiltration occurred. We’ll have mother collect the urine for 12 hours. The most important are the first six hours for toxic and essential minerals. When we get that report back we’ll proceed with further injections as indicated on approx. a weekly basis. Recheck the levels in 4–6 IVs depending on his response….

Initial impression: Autistic Syndrome, Heavy Metal Toxicity, Candidiasis, Multiple Food Allergies…

Roy E. Kerry, M.D.’

10 August 2005:

Second chelation treatment: (EDTA) administered by a five to ten minute ‘IV push’.

23 August 2005:

Third chelation infusion: ‘IV push ordered by Dr. Kerry and his protocol … prior to procedure patient was alert and oriented. No acute distress. Mother was present in room….

During the IV push, Tariq’ s mother, Marwa Nadama said that something was wrong. Doctor Mark Lewis took Tariq’s vitals and then Tariq went limp. Nurse Theresa Bicker called 911 and helped with CPR while the ambulance was en route. Tariq was taken by ambulance to Butler Regional Hospital where he was pronounced dead.

Chief Forensic Pathologist’s report:

‘Abubakar Tariq Nadama, a five year old African-American male, died as a result of diffuse, acute cerebral hypoxic-ischemic injury, secondary to diffuse subendocardial myocardial necrosis. Myocardial necrosis is a result of hypocalcaemia due to administration of EDTA.’

In August 2007, in addition to facing charges of professional misconduct and civil litigation, Dr Kerry was charged with involuntary manslaughter (though this charge was subsequently dropped).

(Orac 2007)

We examine below the technique of chelation and the controversy over the agent – EDTA – used by Dr Kerry. It is first important to clarify a number of points that emerge from Tariq’s medical record.

Before undergoing the fatal chelation therapy, Tariq, described elsewhere in these records as a ‘happy’ and ‘very energetic’ boy, had received ten ‘other types of therapies’. This is characteristic of the unorthodox biomedical approach which recommends a wide range of interventions, which are often pursued simultaneously. This makes any judgement of which treatment may be working – or causing adverse effects – impossible. His diagnosis with ‘heavy metal toxicity’, one of several diagnoses, seems not to have been supported by the results of urine tests taken following his first course of chelation in July. These tests are reported as showing reduced levels of iron and only a slightly elevated level of lead. The significance of these results is unclear as the reference ranges are appropriate only in circumstances where increased output has not been provoked, for example, by chelation treatment. There is also some confusion over whether his aluminium levels were raised. There are further uncertainties over whether the dose of the chelating agent was correctly calculated and whether it was appropriately diluted.

Tariq’s records indicate that to administer an intravenous infusion he had to be restrained by at least four adults using a ‘papoose board’. This device is a flat wooden board with attached fabric straps which are wrapped around the child’s body and limbs to prevent struggling during treatment. It was obviously impossible to restrain Tariq for the period of several hours generally recommended for the chelation infusion. Hence, in contravention of specific cautions issued by the manufacturer, Tariq – suitably restrained – received this medication over ‘five to ten’ minutes, in a ‘rapid IV push’. Dr Kerry was not present at the time of the fatal infusion – though Tariq’s mother and his younger sister Hauwau were in the room. The infusion was administered by the clinic nurse, Theresa Bicker, assisted by Dr Mark Lewis, a colleague of Dr Kerry.

This tragic story illustrates a number of features of the practice of unorthodox biomedical interventions in autism. It reveals a family in which well-educated parents (Tariq’s father was a hospital doctor in England) appeared to have lost confidence in mainstream medicine to the extent that they were prepared to pursue a range of unorthodox biomedical therapies. Furthermore, they were ready to travel across the Atlantic to secure these treatments, no doubt at great cost and inconvenience to the family. In subsequent chapters, we will consider in more detail the outlook of the parents who seek these treatments, as well as the role of practitioners and the nature of their therapies. Here we look a little closer at this case and at the specific therapy of chelation.

Usman and Kerry

Dr Anju Usman is a prominent figure in the autism biomedical movement. She is a frequent speaker at conferences of the Defeat Autism Now! network in the USA and abroad and she has spoken at conferences in Edinburgh and Bournemouth, encouraging the extension of this network in the UK. She is listed as ‘an advisor’ to the Edinburgh biomedical clinic. ‘Board certified’ as a family practitioner, she has no specific qualifications in paediatrics or autism. She previously worked in the Pfeiffer Medical Center in Warrenville, Illinois, which provides a range of alternative health treatments in the tradition of ‘orthomolecular’ psychiatry. The clinic is named after Carl Pfeiffer, who died in 1988, notorious for his CIA-funded researches on LSD mind control in the 1950s.

According to a sympathetic account by fellow DAN! practitioner Dr Kenneth Bock, Dr Usman’s personal involvement in alternative therapies was strongly influenced by the illnesses of her own family (Bock 2007). Her three daughters have all suffered from severe allergic and other disorders, the eldest from asthma and juvenile rheumatoid arthritis, the second from asthma and diabetes, the third from allergic conjunctivitis so severe that it resulted in cellulitis around the eyes. Her only son, the youngest, is said to be in excellent health. In January 2003 her eldest daughter Priya died at the age of 13 following an acute anaphylactic reaction to peanuts. A similar reaction had led to an earlier hospital admission and intensive care treatment.

According to Dr Bock, Dr Usman believes that her children, and other children with similar problems, are not suffering from mercury toxicity, which causes predominantly neurological effects, but from the effects of aluminium toxicity on the immune system. Describing this speculation as ‘a stunning clinical breakthrough’, Dr Bock is dismayed that Dr Usman has not received funding to research this matter further, though she has a scant record of academic research or publication (Bock 2007: 137–138). In the meantime, she recommends the removal of aluminium as part of her treatment regime for children with autism and attention deficit hyperactivity disorder (ADHD), whom she describes as ‘metabolic train wrecks’. Tariq Nadama’s records indicate that it was Dr Usman’s diagnosis of a high level of aluminium that led to his treatment by Dr Kerry.

It is not clear what ten treatments Tariq received before he arrived in Dr Kerry’s clinic, though they seem to have included hyperbaric oxygen. In 2005 Dr Kerry was 68 years’ old, retired from his practice as an ear, nose and throat surgeon, but working as an allergist in an alternative health clinic. He did not become formally listed as a DAN! practitioner until 2006, after Tariq’s death, when he completed the eight-hour course required for DAN! accreditation. However, he had previously collaborated on a paper with Dr Rimland and others, on the theme of ‘enzyme-based therapy for autistic spectrum disorders’, published in 2002 (Brudnak et al. 2002). He had never previously administered chelation therapy to a child with autism.

Drs Usman and Kerry illustrate two trajectories commonly leading to the role of a DAN! practitioner. Some, like Dr Usman, start out as parents concerned about the health and developmental problems of their own children. Though their training may not be in any directly relevant speciality, they find their basic familiarity with medical science of use in reviewing the literature. Doctor–parents who find the unorthodox biomedical approach appealing then begin using it with their own children. Encouraged by the results of this approach in their own family, they advise other parents, perhaps informally at first, but they then proceed to investigate and treat other children as a professional undertaking in private practice. Though these doctor–parents would not usually be qualified for any public appointment in caring for children with autism, all that is required to become accredited as a DAN! practitioner is to attend a DAN! conference and spend a few hours with another practitioner. Others, like Dr Kerry, start out as practitioners in some area of alternative health. They may, like Dr Kerry, have medical qualifications (which may have been acquired, as in his case, in the distant past). Some may have trained as osteopaths, chiropractors, naturopaths or nutritionists. These practitioners have moved into the treatment of children with autism as an extension of their existing practice, discovering in the world of autism a promising market opportunity. It is unusual for such practitioners to have qualifications or experience relevant to autism.

Chelation

Chelation was first used to treat victims of poison gas in the First World War. The agent Dimercaprol, still the only chelator listed in the British National Formulary, is also known as ‘British Anti-Lewisite’ (BAL) for its capacity to bind with the arsenic-based poison Lewisite. Chelators work by binding with toxins and rendering them water-soluble so that they can be harmlessly excreted in the urine. However, BAL is itself quite toxic and in the Second World War it was displaced by EDTA, which was safer and also more effective against lead poisoning resulting from paint. There are two forms of EDTA. Disodium EDTA (Endrate) has been used to treat life-threatening hypercalcaemia and toxicity associated with the cardiac drug digoxin. It has long been recognised that hypocalcaemia caused by Disodium EDTA can produce irregular heart rhythms, seizures and death. This is why it is recommended that it is administered by slow intravenous infusion (Brown et al. 2006). The alternative form of EDTA, Calcium Disodium EDTA (Versenate), which reduces the danger of hypocalcaemia, is approved for the treatment of lead toxicity. In the 1960s a number of other chelators were developed – DMSA, DMPS – to deal with acute poisoning by a range of toxins, such as lead, arsenic and mercury, though these agents are rarely used in conventional medical practice and only in specialist centres.

In recent decades, chelation has come to be used by alternative health practitioners to treat a wide range of chronic conditions, including medical and psychiatric disorders which have been attributed to environmental toxins, particularly heavy metals, such as mercury in dental amalgam. Chelation has been most popular in coronary heart disease, in which it has been promoted as an alternative to surgical treatments (such as by-pass grafting and angioplasty). The agent most commonly used to treat heart disease is Disodium EDTA (Endrate), which is said to combat atherosclerosis by reducing serum calcium levels, though this is not approved by medical or pharmacological authorities. In more recent years, as the notion that autism is caused by vaccines containing mercury has become increasingly popular, practitioners have begun to offer chelation as a treatment for autistic children, using a wide variety of agents, in oral, injectable or even transdermal forms.

In February 2001, Dr Rimland’s Autism Research Institute convened a conference of 25 ‘carefully selected physicians’ in Dallas, Texas. This conference produced a ‘mercury detoxification consensus position paper’ which was updated in February 2005 (Autism Research Institute 2005). Endorsing the – entirely unsubstantiated but increasingly popular – proposition that autism is ‘a form of mercury poisoning’, this conference recommended the use of a number of chelating agents. This list did not specifically include EDTA, which is not an effective chelator of mercury. The DAN! conference also heard reports of a survey conducted by the ARI which suggested that 73 per cent of parents rated chelation ‘helpful’, a higher rating than for any other intervention. This survey did not report which chelating agent was used. Even if autism were the result of neurological damage from chronic mercury exposure – an unsubstantiated proposition – chelating agents which do not cross the blood–brain barrier could not remove it, or indeed any other heavy metal toxin, from the brain. As a treatment for autism, chelation lacks either a coherent theoretical rationale or empirical evidence of efficacy.

With the anti-mercury campaign in full cry and the enthusiastic endorsement of the DAN! network, it was not surprising that demand for chelation rocketed. According to one estimate, whereas in 2000 only a handful of autistic children underwent chelation therapy, in 2005 some 10,000 received it. Though there is no good evidence that Tariq Nadama suffered from hypercalcaemia or any form of heavy metal toxicity, Dr Kerry agreed to treat him with Endrate, with lethal consequences.

Endrate is the chelating agent recommended in the protocol published by the American College for the Advancement of Medicine (ACAM), described by one critic as ‘a disreputable trade organisation for physicians who provide chelation therapy for virtually every disorder or symptom, save perhaps for the drug’s labeled indications’. Its current president is Dr Usman’s colleague and fellow DAN! practitioner, Dr Kenneth Bock. Though EDTA is ineffective in chelating mercury, it seems that it is widely used by those who believe that they or their children are suffering from mercury poisoning. In 1998 ACAM was censured by the Federal Trade Commission for making unsubstantiated claims for the efficacy of chelation treatment for coronary heart disease and obliged to desist. As a member of ACAM, Dr Kerry exclusively used Endrate (Disodium EDTA) for chelation and did not even stock Versenate (Calcium Disodium EDTA) in his clinic. Hence, following his discussion over the appropriate dose with Dr Usman, he administered to Tariq the form of EDTA he customarily used in his clinic. On the first two occasions serious adverse effects were mercifully avoided; on the third, the rapid infusion produced entirely predictable consequences.

Like many other unorthodox biomedical treatments, chelation is a treatment that has long been used in the alternative health clinics and on the medical fringe that has now been applied to children with autism. Far from representing an innovative approach, the biomedical movement seems to be based on an eclectic mixture of therapies from the twilight zone of alternative health.

‘The wrong drug’

Though the death of Tariq Nadama caused widespread shock throughout the world of autism, it did not produce any retreat from chelation therapy in the biomedical movement. In a response posted on the website of the Autism Research Institute, Dr Rimland claimed that Tariq’s death had not been the result of properly administered chelation, but was instead the result of a drug error: ‘he had been mistakenly given a “look-alike” drug, Disodium EDTA, instead of Calcium Disodium EDTA’ (Rimland 2005). He continued to proclaim the ‘good results’ reported in the ARI parental survey, in which chelation emerged as the highest of 88 interventions (including 33 drugs), confirming inadvertently the astonishing scale of therapies, including medications, now offered under the biomedical protocol. Notwithstanding the recent death of Tariq, and two other widely reported fatalities, he continued to insist on chelation’s good safety record. In fact, as we have seen, Dr Kerry treated Tariq with the customary form of EDTA he used and the only form he had in stock. If there was a drug error, it was in the decision to undertake chelation with any form of EDTA: in Dr Kerry’s clinic, this inevitably meant Endrate.

Indeed, for many commentators, the prescription of any form of chelation treatment for Tariq meant giving him the wrong drug. There was no evidence he had any form of heavy metal toxicity, no evidence that any chelation treatment might be beneficial and well-known dangers associated with all such treatments. As one blogger put it, ‘Yes, Dr Kerry was irresponsible for using the wrong drug, but any doctor who uses chelation is equally irresponsible’ (Not Mercury 2006). Another blogger mourned this ‘inevitable’ death, ‘given that more and more parents of autistics, desperate to do anything to help their children, are opting for this unproven and ineffective therapy’ (Orac 2006). He regretted that parents were opting for chelation ‘on the basis of incomplete or erroneous information promoted by various organisations’ that autism and other developmental disorders were ‘all misdiagnoses for mercury poisoning’.

A war of words erupted over the Tariq Nadama case, as parents sympathetic to the biomedical movement responded defensively. The following statement was issued by one of the leading anti-mercury campaigns in the USA, Generation Rescue: ‘We are not desperate parents willing to try anything. We are educated, caring parents who have done thousands of hours of research and administered dozens of medical tests on our children under the care of knowledgeable physicians’ (Generation Rescue 2005). The case of Tariq Nadama raises serious questions about the quality of parental research that leads to the pursuit of such therapies. It also raises questions about just how knowledgeable some of the physicians providing these therapies are, as well as about the validity of their medical tests.

Adults with autism joined the discussion about the death of Tariq Nadama, criticising not only Dr Kerry, but the outlook of the wider unorthodox biomedical movement – and the parents who subscribed to it. Joe Klein regretted this ‘tragic, needless death’ which he considered the consequence of the conviction among parents that autism was ‘worse than cancer’ and hence justified the resort to extreme treatments lacking a scientific foundation:

Autistics like me have been trying to convince the ‘war on autism’ parents that their mindset is destructive to their kids. Not just chelation, but the whole ‘cure’ mentality. It creates a dynamic in which nearly any risk is acceptable in fighting the autism, because living with autism, as they see it...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Preface
• 1 Introduction: when quackery kills
• 2 Toxic childhood
• 3 Age of autism
• 4 Angry parents
• 5 Unorthodox biomedics
• 6 Genes or toxins?
• 7 MMR: ten years on
• 8 Mercury and beyond
• 9 From diet to detox
• 10 Treatment issues
• 11 Conclusion: being appropriately critical
• Bibliography