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.

Advertisements

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.

Letter to America

LET NIMH HEAR YOUR VOICE

I have blogged about the NIMH research programme into autism before . Like most autism research it has a strong medical bias, looking for causes and cures. But if you devote most of your research budget to trying to eliminate autism what does that do for current generations of autistic people? Even assuming that the scientists do find a medical way of making autistic people normal that still leaves enormous questions.

Would it make them into better people?

Would it make them into happier people?

Would it be right to do it and should they have the right to refuse?

Who would choose for autistic children?

Because autism is so complex I suspect that it will be a long time before we have to answer those questions. What if we spent the money increasing our understanding of autism and finding ways for autistic people to get on in the world? The National Autistic Society helped to set up Research Autism in the UK precisely because there is so little decent research evaluating the interventions that are supposed to help autistic people.

And if we just see autism as a medical problem we are missing the point entirely. Some autistic  people have mental health problems. Some of them have epilepsy. Some of them have severe learning difficulties. (UK English = retardation in US English) Some of them have disturbed behaviour. So do lots of non-autistic people. It is useful to inquire into whether or not any of these problems are more common in the autistic population than in the non-autistic population. It is also important to ask why. How much depression in autistic people is caused by our lack of understanding and the media message that they are damaged, doomed individuals? But we also need to investigate the strengths and appreciate the value of autistic people, whatever their difficulties.

If you think the medical model is doing a disservice to autistic people I urge you to visit this petition, asking the NIH to rethink their views on autism research. Autism Diva has an excellent post on this subject and further advice on how concerned US citizens can make their voice heard.

VACCINE DEBATE

Coming soon in San Diego (Saturday 13 January) is a debate between David Kirby, author of Evidence of Harm and the subject of my previous blog and Arthur Allen who has written a new history of vaccines. It looks  like the meeting is going to be packed with anti-vaxers who do not think that autism is so complex – its mercury poisoning doncha know? – and do not share my concerns about imposing a cure. So checkout this flier and if you can get along there and give Arthur some backing  I am sure he will appreciate it. You can buy his book afterwards and he will sign it for you.

NIMH Chelation Study

Two weeks ago I wrote to Karin Lee at the National Institute for Mental Health (NIMH) press office after reading a press release that said that NIMH was going to conduct a trial to see if chelation therapy improved the behaviour of autistic children.

I asked what I thought was an obvious question.

Can you point me to any published research that demonstrates that autistic children do have elevated levels of heavy metals in their blood?

I wanted to know if NIMH had any evidence that blood levels of mercury are higher in autistic children than their neurotypical(NT) peers. To judge from Karin’s reply, NIMH do not have any evidence. Instead of giving me references Karin suggested that I

conduct a search on PubMed, a service of the National Library of Medicine. To access PubMed go to the Web site http://www.ncbi.nlm.nih.gov/pubmed and type your topic in the search field.

Thank you Karin. I do know how to search PubMed. I found a recent study that showed no difference between mercury levels in autistic and NT children. I found another study that gave reference values for mercury in the blood of children as 1 microgram per litre (1 microgram =1 millionth of a gram) and for lead as 50 micrograms per litre. Karin also refered me to a more detailed description of the clinical trial. This contains the following inclusion criteria.

  • Male or female subjects, four to ten years of age.
  • Meets research criteria for ASD (specifically, autism, Asperger Disorder, or Pervasive Developmental Disorder – Not Otherwise Specified).
  • Detectable (greater than 0.1 microgram per deciliter) levels of blood lead and/or blood mercury.
  • Each legal guardian must have a level of understanding sufficient to agree to all required tests and examinations. Each legal guardian must understand the nature of the study and must provide written consent to study protocol.

Note the figure for levels of lead or mercury is equivalent to the reference figure for mercury of one microgram per litre and way below the reference point for lead. These levels are so tiny that everybody has them. Here are the exclusion criteria.

  • History of allergic reaction to sulfur or thiol-containing substances
  • History of previous chelation therapy for autism
  • History of uncontrolled epilepsy
  • Weight less than 15 kg at screening
  • Presence of a chronic medical condition that might interfere with study participation or where study participation would be contraindicated or clinically significant abnormal baseline laboratory results.
  • Level of lead above 10 microgram per d, or Level of mercury over 44 microgram per deciliter (toxic levels which require intervention with chelation and preclude placebo assignment) or other evidence of heavy metal toxicity.
  • Recent (less than two months prior to study entry) initiation of behavior therapy

Note that autistic children with heavy metal poisoning are not eligible for this study. They need treatment and it would be unthinkable to put them on a placebo. But this means that to be eligible for a study in which you may be treated for heavy metal poisoning you must be completely healthy and not have heavy metal poisoning.

Autistic children with traces of heavy metals in their blood that are no different from the levels in NT children are going to be subject to unnecessary medical treatment to see if it alters their behaviour. Well, it would certainly alter mine!

I wonder why they are only recruiting autistic children? Perhaps NT children with the same reference levels of mercury would also benefit from a dose of chelation therapy. But what self respecting parent of a healthy child would submit their child to that? And that goes for the parents of healthy autistic children as well.

I am guessing that NIMH will only attract parents who believe their child is sick. They believe their child is mercury poisoned. NIMH will have to have a very good screening programme to exclude parents who have already tried chelation on their child. I am guessing that, even then, they will only attract parents who are already using other biomedical interventions. There is nothing in the description of the clinical trial that takes account of any of the other possible confounds arising from unorthodox biomedical interventions.

There is a final ethical consideration I would like to raise.

Parents approach DAN! practitioners with a false belief about their child’s health, seeking treatment for that child. The DAN! practitioner shares their belief and provides the treatment.

Parents approach a NIMH doctor with a false belief about their child’s health, seeking treatment for that child. The NIMH doctor does not share their belief. In fact they have to establish that the child is not ill. But they still provide the treatment requested by the parent.

Who has made a moral decision here; the DAN! practitioner or the NIMH doctor?