Bad Science Abuses Autistics

If you have not read them already I urge you to visit Kristina Chew’s and Interverbal’s blogs where they write on an extraordinary technique employed by French psychiatrists to “treat” autism.

And if anybody is fluent in French I would be interested to know what they are saying about it on Forum Autisme My own limited grasp of the language suggests that, thankfully, a lot of French people are outraged by this “treatment” as well.

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This is not quackery from some fringe movement like DAN! This is quackery from the heart of the French psychiatric establishment where Freudian-based psychoanalysis still holds sway. Before we get too smug it is as well to remember that the Tavistock Centre in the  UK is funded by the NHS to treat autism with psychoanalysis. And according to the Lancet

Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services.

Thank you to Michelle Dawson for this. Writing on her discussion list, The Misbehaviour of Behaviourists she also informs me that Professor Hobson is a member of the Tavistock Centre. As I understand it Hobson believes autism  results from a failure of interaction between child and caregiver that he regards as “the cradle of thought,” the essential foundation of what it means to be human. Here we are again. Autism is seen as a deficit that makes you less than human. So abuse of these children is OK in the name of science. I am sure scientists who experiment on animals have to follow stricter codes of ethical practise than those that apply to autistics and other victims of psychiatric research.

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. 

The Politics of Autism: from Hong Kong to London

If I were part of a group of parents of autistic children organizing an international conference costing in the region of 200,000 US dollars, I would want the best speakers in the world.  My top ten, out of all the speakers I have listened to at autism conferences, in alphabetical order are Tony Attwood, Simon Baron-Cohen, Gunilla Gerland, Chris Gillberg, Judy Gould, Temple Grandin, Wendy Lawson, Gary Mesibov, Clare Sainsbury, Lorna Wing. I can think of dozens of others who, in my opinion, would grace any international conference on autism, including old friends like Larry Arnold, Luke Beardon, Leneh Molton, Dennis Debbaudt and those I only know via the internet like Michelle Dawson, Roy Grinker, Mike Fitzpatrick, Dinah Murray and Estee Klar Wolfond. Then there are all the others whom I have never heard speak, never met and never swapped emails with, like Eric Fombonne and Donna Williams.

So who have the Autism Parent Network lined up for the Asian Autism Conference in Hong Kong this September? Here is the official list with their authorized biographies. There is not one internationally acclaimed authority on autism. And they have also studiously ignored the local talent. The authors of this paper and this paper who all found no connection between mercury and autism have not been invited to speak. But there are plenty of snake oil salesmen, faith healers, exorcists and nutty professors who still cling to the mercury hypothesis.

Dr Ken Bock

Dr Ken Bock received his medical degree with honors from the University of Rochester. He is an experienced DAN clinician, whose expertise lies in bringing a comprehensive integrative medicine approach to complex medical problems. Utilizing this patient-centered approach he has helped thousands of children on the road to recovery. In this lecture he will explain why the gut and diet are the first step on this road to recovery.

Dr Jeff Bradstreet

Dr. Bradstreet is the founder of the International Child Development Resource Center in Florida. He is an Adjunct Professor of Neurosciences at Stetson University, Florida and the Southwest College of Naturopathic Medicine, Phoenix, Arizona. Dr. Bradstreet serves as an active collaborator on research projects at numerous medical schools. His interests in autism include metal detoxification, hyperbarics and immunological management of gastrointestinal problems. Dr Bradstreet will review the favorable clinical observations and research outcomes regarding the use of Hyperbaric Oxygen in autism spectrum disorders and outline common protocols.

Dr Stephanie Cave

The years between 1991 and 2002 will probably go down in history as the most controversial for the vaccine program. Many children were given vaccines containing toxic amounts of ethyl mercury and aluminum, as well as live viral contaminants. Dr. Cave will discuss the impact that this has had on the pediatric population, and will give some information about the numerous new vaccines that are being recommended. She will explain how important it is to get vaccinated, but safely.

Dr Doreen Granpeesheh

Dr. Granpeesheh founded The Center for Autism and Related Disorders and through its 17 offices worldwide, she has provided diagnosis, assessment and behavioral treatment for over 5,000 children with autism and related disorders.

Dr Martha Herbert

Dr Martha Herbert is a Pediatric Neurologist at Massachusetts General Hospital (Harvard Medical School) and is on the faculty of Harvard Medical School. She specializes in children with learning and developmental disorders. In this lecture she discusses the growing body of research demonstrating biomedical problems like inflammation and oxidative stress in Autism which suggests that the brain may not be the prime target but rather caught in the crossfire of system-wide abnormalities whose treatment can lead to improved brain function

Dr Andrew Levinson

Dr. Levinson is an Advanced DAN!R Practitioner and has been working with children on the spectrum and their parents since 2000. He is an orthomolecular psychiatrist, a yoga master and the founder of Vitality Health & Wellness, a center committed to reversing the symptoms of Autism and related disorders and the AMRIT Foundation, a non-profit organization that raises monies to help families seeking biomedical interventions.

Dr Liz Mumper

Dr. Mumper is a general pediatrician who treats children with autism spectrum disorders and attention deficits and conducts clinical research in her Virginia practice, Advocates for Children. She is Medical Director of the Clinicians Training for Defeat Autism Now! and co-chair of the DAN! Advisory Board.

Dr James Neubrander

Dr Neubrander is board-certified in Environmental Medicine with special interests in heavy metals and folate/B12 chemistry. He has pioneered the use of Vitamin Methyl B12 in the treatment of Autism and evaluated over 75,000 injections of Methyl B12. It is his opinion that there are certain factors that must be in place, or avoided, for clinicians and parents to realize optimal benefits.

Dr James Partington

Director of the Star School in California on Applied Behavioural Analysis (ABA), an important part of the overall treatment of ASD

Dr David Quiq

Dr. Quig received his PhD in Nutritional Biochemistry from the University of Illinois. He is currently Vice President, Scientific Support for Doctor’s Data, and has recently co-authored and facilitated several studies pertaining to toxic and essential elements in children with autism and learning/behavioral disorders.

Mr Stephen Shore

Mr Stephen Shore was diagnosed to have autism at young age. He obtained a Special Education degree from the Boston University. He actively participates in work relating to the education, social aspects, employment and rights of autistic persons. Mr Shore will be receiving his PhD in Special Education in September

I have no idea what Stephen Shore is doing in such company, nor why he, Temple Grandin, Valerie Paradiz and her son Elijah Wapner appeared at the recent

US Autism & Asperger Association Conference

Treating Autism as a Medical Disorder;
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together

Temple is probably the most famous autistic person in the world. When autistic people and their advocates appear at conferences like this they are not providing a countervailing view. They are giving tacit approval and validation to the quack remedies being espoused by their fellow speakers. who ask “If we are so off the wall why is Temple happy to share a platform with us?” Why indeed.

Meanwhile, a much less spectacular, but probably more important meeting is scheduled to be held in London next month. it features two of my friends, Larry Arnold and Dinah Murray.

 

THE POLITICS

OF AUTISM

7 pm September 2007

@ City Hall,

off Tower Bridge, London SE1 

SPEAKERS

Dinah Murray (University of Birmingham)

Larry Arnold (Member, NAS Board of Trustees)

David Morris (Disability advisor, Mayor of London) 

All speakers  currently provisional 

To register for the meeting please phone/ text 07875838968 or 020 79835773 or email david.morris@london.gov.uk or rocobley@hotmail.com. 

Owing to circumstances beyond our control we cannot guarantee a personal response to any or all enquiries, but all requests for registration will be added to the attendance list. 

VERY IMPORTANT NOTICE

Anyone wishing to attend this meeting MUST register in advance. No registration = No Admission.

Patrick Holford – Quack of Quacks

George Elliot’s eponymous hero Felix Holt was a man of principle unlike his father. After his father’s death, 

Felix was heir to nothing better than a quack medicine; his mother lived up a back street in Treby Magna, and her sitting-room was ornamented with her best tea-tray and several framed testimonials to the virtues of Holt’s Cathartic Lozenges and Holt’s Restorative Elixir.

But Felix would not countenance his mother living on the sales of the quack medicines left to her by her late husband.

I know that the Cathartic Pills are a drastic compound which may be as bad as poison to half the people who swallow them – that the Elixir is an absurd farrago of a dozen incompatible things; and that the Cancer Cure might as well be bottled ditch-water.

Felix was determined to earn an honest living.

I shall keep my mother as well – nay, better – than she has kept herself. She has always been frugal. With my watch and clock cleaning, and teaching one or two little chaps that I’ve got to come to me, I can earn enough. As for me, I can live on bran porridge.

Patrick Holford – true believer.

Ah, bran porridge! Patrick Holford would be proud. He is a great believer in bran. Unfortunately, like Holt’s father, he is also a great believer in  pills and elixirs and cures for cancer. In fact Holford thinks he can cure most things including cancer, diabetes, heart disease, alzheimers, arthritis and, of course, autism – hence my interest. And once you are cured he promises to give you beautiful skin and improve your sex life as well!

Patrick Holford – Quack

OK. The guy is a quack. End of story. Unfortunately this quack appears regularly on national TV and is cited as an expert by many national newspapers. As a result his books are bestsellers and he is beginning to gain an international reputation. This makes him a dangerous quack. Fortunately over at Holford Watch a team of bloggers are on his case

This blog uses basic science to challenge the nutritionist Patrick Holford. Holford’s website describes him as “a pioneer…Britains best-selling author and leading spokesman on nutrition and mental health”. Holford’s key qualifications include “being frequently quoted almost weekly in…newspapers”; he also claims to be “a vegan who eats eggs and fish”. With all these credentials, there’s obviously a lot to learn from watching the guy!

Another favourite of mine is Moonflake who wrote this:

Patrick also claims to have miracle multivitamin cures for almost anything. Not feeling mentally acute? Let’s see what his advice is on improving you memory and concentration:

Here are five easy steps you can take now to help keep your mind and memory sharp:
1. Read my book ‘Optimum Nutrition for the Mind’ £12.99
2. Join 100% Health today and you can have this book at a members discounted price.
3. Have a personal nutrition consultation.
4. Attend my 100% Health Weekend Workshop
5. Follow my  Brain Friendly Diet and supplement programme.

He can’t be taking his own advice, or he might have considered swapping steps 1 and 2. But maybe it’s not a trend. Maybe he really isn’t all about sucking you dry of every miserable penny. Let’s see what his advice on avoiding cancer is:

Here are five easy steps you can take now to say no to cancer:
1. Read my book ‘Say No to Cancer’  – £6.99
2. Join 100% Health today and this book can be yours for free.
3. Have a personal nutrition consultation.
4. Attend my 100% Health Weekend Workshop
5. Follow my ‘Say No to Cancer’ Diet and supplement programme.

I think there might be a pattern here.

Ben Goldacre has also used his Bad Science blog and his newspaper column in the Guardian to expose Holford’s quackery, especially his pernicious tour of Africa when he touted vitamins as a more effective rememdy for AIDS than AZT. Incidentally it was in Africa that journalist Tom Eaton coined the immortal description of Holford as an international bowel-whisperer. He is also anti vaccine, unless they are homeopathic vaccines. I kid you not. And we are not talking common or garden MMR or flu jabs here.

Although less well researched, you may wish to investigate homoeopathic immunisations. In one study 18,000 children were successfully protected against meningitis with a homoeopathic remedy, without a single side-effect.

Inevitably, The Quackometer has revealed that Holford is on the advisory board of Safe Harbor, which is a front organization for the Scientologists. So we can add wackery to quackery.

AIDS, Cancer, Diabetes, Meningitis – these are killer diseases and Holford is giving potentially lethal advice to sufferers who eschew orthodox interventions in favour of his quackery. Compared to this are his dabblings in autism a sideshow that we can safely ignore?

I think not. Autism may not be life threatening but quackery often is. And parents who are aware of his outrageous claims  in other areas will be less likely to trust their child’s welfare to somebody like Holford. So I looked at his website (google it if you must. I refuse to link to misinformation) from which all subsequent Holford quotes are taken.

Patrick Holford on Autism.

Autism appears to be occurring more often and while autism used to occur primarily from birth, over the past ten years there has been a dramatic increase in late onset autism, most frequently diagnosed in the second year of life.

Holford is claiming, with no supporting evidence, that regular autism is present from birth but now we have an increase in late onset autism which strikes at 24 months. 

Late onset autism does not exist. Part of the diagnostic criteria for autism is that the symptoms are present prior to 36 months. How  can there be a late onset variation that appears 12 months earlier? I suspect that Holford is referring to regressive autism, a term used to describes the condition in those children who appear to be developing normally but then regress or fail to meet subsequent developmental milestones. Analysis of family videotapes has shown that this is a real phenomenon. But many of the children who regress into autism show signs of atypical development prior to regression and expert diagnosticians can spot subtle signs, indicative of autism, in these children that parents and non-specialist clinicians often miss.

Holford would like us to believe that regression is caused by factors like the child’s diet,  environmental pollution or vaccinations. The fact is that regressive conditions can be genetic. We even know which gene is responsible in Rett Syndrome, a regressive form of autism found almost exclusively in girls.

Patrick Holford on the causes of Autism

As with many conditions there is debate as to whether autism is inherited or caused by something like diet or environment.

Actually there is no debate.  The consensus is that autism is genetic. Lots of factors affect gene expression, including other genes. Environmental factors that begin in the womb and continue after birth also play a part. What we have is a complex interaction of the organism and its environment that defies simple either or explanations. Holford is trying to revive the old genes versus enviroment dichotomy which no self respecting biologist would countenance today.

Parents and siblings of autistic children are far more likely to suffer from milk or gluten allergy, have digestive disorders such as irritable bowel syndrome, high cholesterol, night blindness, light sensitivity, thyroid problems and cancer. Being breastfed also increases the risk.

This is nonsense, and badly written to boot. Does the final sentence refer to risk of disorders in parents and siblings or the risk of autism? Whatever happened to “Breast is Best”?

At first glance, once might suspect that autistic children may inherit certain imbalances. However an alternative explanation might be that other family members eat the same food and may be lacking the same nutrients and there is growing evidence that some of the nutritional approaches used to help correct dyslexia, dyspraxia and ADHD can make a significant difference to the autistic child.

None of this is supported by the data.  It is anecdotal. But there are also many anecdotes from parents about the unusual eating habits of their children. In other words, they do not eat the same food.

Recently there has been a raging debate over the danger of the MMR vaccine causing autism in children. The official line is that there’s no good evidence of such a danger.

The debate is over. Wakefield was wrong.  He thought he had found measles in the gut but it was in fact human DNA not measles RNA. The exchange reported by Autism Diva at the autism omnibus proceedings suggests that he published his results knowing that there was good reason to doubt them. Wakefield ignored the doubts. Real science is built on doubt and it is real science, not the official line that has debunked Wakefield.

Patrick Holford – How to Improve the Symptoms of Autism.

Ensure that any nutrient deficiencies are addressed Research has shown that addressing nutrient deficiencies can dramatically improve symptoms in Autistic children.

Holford is not talking about healthy eating here. There is a lucrative market in selling vitamins, mineral supplements and essential fatty acids. Holford is part of this scam.

Remove Allergens – In addition to nutrient deficiencies, the most significant contributing factor in autism appears to be undesirable foods and chemicals that often reach the brain via the bloodstream because of faulty digestion and absorption.

Actually the scientists who subscribe to this theory regard it as evidence of food intolerance, not an allergy. Allergic reactions are immediate and can range from hives to  anaphylactic shock. The effects of food intolerance build up over time. Evidence for food intolerances causing autism is weak and hotly contested. But, even if his  sources are mistaken, Holford could at least do them the service of reading them properly and making sure he understands them before rushing into print!

The strongest direct evidence of foods linked to autism involves wheat and dairy and the specific proteins they contain – namely gluten and casein. These are difficult to digest and can result in allergy especially if introduced too early in life.

Once more, it is intolerance not allergy. Words matter. Accuracy matters, especially in medical matters. I am reminded of the old joke. 

A man walks into the doctor’s surgery and says, “I want to be castrated.” The doctor tries to dissuade him but finally agrees to do it. After the operation the doctor does his rounds and says to the man, “I am still baffled by your request. It was most unusual. Men normally come to me to be circumcised.”  “Oh,” the man replies, “That was the word I was looking for!”

So, what is the right word for Holford: quack; charlatan; fake; snake oil merchant; conman; exploiter; evil, lying busturd? send your answers to info@patrickholford.com

EDIT

NHS Blog Doctor and Holford Watch have both commented on Patrick Holford today. Support your local quackbusters!

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.

Downs but not out.

Down’s syndrome novel tugs at America’s heartstrings

Moving tale that highlights genetic condition becomes sleeper hit of the year

Paul Harris in New York
Sunday June 17, 2007
The Observer

Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite – or perhaps because – it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.

According to the Observer

The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.

This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.

Apparently many prospective parents of Downs children do not believe that their child will be happy.  Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.

The relevance to autism

With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.

A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.

This is damaging for a number of reasons.

  1. If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
  2. To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
  3. If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
  4. Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.

As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.

Scientific rigour, respect and responsibility and autism

I nominate this for the annual “Teaching Granny to Suck Eggs award.”

Rigour, respect and responsibility: A universal ethical code for scientists

Rigour, honesty and integrity

    Act with skill and care in all scientific work. Maintain up to date skills and assist their development
    in others.
    Take steps to prevent corrupt practices and professional misconduct. Declare conflicts of interest.
    Be alert to the ways in which research derives from and affects the work of other people, and
    respect the rights and reputations of others.

Respect for life, the law and the public good

Ensure that your work is lawful and justified.
Minimise and justify any adverse effect your work may have on people, animals and the natural
environment.

Responsible communication: listening and informing

Seek to discuss the issues that science raises for society. Listen to the aspirations and concerns of
others.
Do not knowingly mislead, or allow others to be misled, about scientific matters. Present and
review scientific evidence, theory or interpretation honestly and accurately.

This piece of guff is published by the British Government. Scientists are supposed to sign up to this in order to restore public confidence in science. Chief scientific advisor to the government, Sir David King has been promoting the code in a series of articles in the Guardian. To be honest, if I was a scientist my first reaction would be to feel insulted by such patronising nonsense. My second reaction would be profound disappointment.

This is our government’s response to growing public mistrust in science. There is a common perception that scientists have sold themselves to the big corporations and to government. So the government response is to ask to scientists to promise not to do all the things that they are wrongly accused of. It is akin to the no win situation where a man is asked, “When did you stop beating your wife.” Scientists are assumed to have a case to answer.  The onus is on them to reassure the public by signing up to a code which can be summed up as, “I promise to be good from now on.”

It would be a lot better to actively defend science and point to the undoubted benefits it has brought. My favourite website at the moment is Sense About Science. This is not a government department. It is a charitable trust.

Sense About Science is an independent charitable trust promoting good science and evidence in public debates. We do this by promoting respect for evidence and by urging scientists to engage actively with a wide range of groups, particularly when debates are controversial or difficult.

If the government really wants to raise scientific awareness and understanding it could do worse than reprint this year’s annual lecture from Sense About Science, a spirited defense of science by Professor Richard Tallis, and post a copy to every household in the country.

Meanwhile, the people who really ought to sign up to the government’s ethical pledge are the same quacks and alternative practitioners who are cashing in on the public mistrust of real science and selling them pseudo-science. As Professor Tallis puts it, the problem is

why scientific expertise and science itself is regarded with suspicion; and why nonsense about science and nonsense passing itself off as science seems to be having such an easy time of it.

So let us apply the government’s ethical code not to science, but to those who are selling alternatives to science like ARI/DAN! the Autism Treatment Trust and the rest of the alternative autism treatment industry. How would they cope with this?

Scientists and institutions are encouraged to reflect on and debate how these guidelines may relate to
their own work. For example, acting with rigour, honesty and integrity may include: not committing
plagiarism or condoning acts of plagiarism by others; ensuring that work is peer reviewed before it is
disseminated; reviewing the work of others fairly; ensuring that primary data that may be needed to
allow others to audit, repeat or build on work, are secured and stored. Similarly, in communicating
responsibly, scientists need to make clear the assumptions, qualifications or caveats underpinning their
arguments.

For some intelligent, exciting writing about science and autism please visit these blogs:

http://autismdiva.blogspot.com/2007/03/down-time-or-what-red-queen-needs.html

http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies.html

http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies-part-second.html

http://www.autismstreet.org/weblog/?p=108