Action For Autism

Ben Goldacre versus Matthias Rath - Victory!

I am currently reading the excellent Bad Science by Ben Goldacre. If you want  a taster I recommend this edited excerpt from The MMR Hoax that forms the penultimate chapter. This is not just about autism. Brain Gym, homeopathy, Gillian McKeith, Patrick Holford, fishoil - nearly all the usual suspects are featured. There is one glaring omission - Matthias Rath. This is the man who went to South Africa and persuaded people to switch from their anti-retroviral AIDS medication to his nutritional supplement, VitaCell. He was hoping to do a deal with the South African government whose presiedent, Thabo Mbeki, took the stance that poverty rather than HIV was the biggest factor in the AIDS epidemic in his country. He was supported by his health minister, Dr Manto Tshabalala-Msimang who blocked the supply of ARVs in favour of the healing properties of lemon, garlic and beetroot. Dr Manto Tshabalala-Msimang had previously met with Matthias Rath.

Ben Goldacre has written about Rath on his blog but some of the links are broken and Rath does not get a mention in Ben Goldacre’s book. Now we know why. For the last year Rath has been pursuing Ben Goldacre and the Guardian for libel. On Friday Ben Goldacre reported on his blog, Bad Science that

This libel case has drawn on for over a year, with the writ hanging both in my toilet, and over my head. Although fighting it has been fascinating, and in many respects a great pleasure, it has also taken a phenomenal amount of my time, entirely unpaid, to deal with it. For the duration of the case I have also been silenced on the serious issues that Rath’s activities raise, the chapter on his work was pulled from my book, and I have been unable to comment on his further movements around the world.

He also told us that  Rath had finally dropped his case. So instead of a chapter, Rath will now be the subject of a book.

For my part, I will probably now write a swift book on Rath and South Africa, as a way to make all the fascinating extra information I’ve had to dredge through useful to others, and to try and recoup something so that my time was not wasted. It will be meticulously well referenced and carefully written.

Today it was front page news in the Guardian with extensive features inside. Two articles by Ben Goldacre and an excellent leader article. Full marks to the Guardian for backing Ben Goldacre. They have been awarded interim costs of £220,000 and will be pursuing Rath for the rest of the estimated half a million pounds it has cost them to defend this action.  Let us hope that the damage to his reputation and his wallet will make him less of a threat to human health. Just how reprehensible Matthias Rath is can be judged by these witness statements from South Africa also published by the Guardian today. Here is one testimony to Rath’s crimes.

Mandla Majola is the coordinator of the Treatment Action Campaign (TAC) in Khayelitsha, a township outside Cape Town. TAC educates people about HIV and Aids:

“Matthias Rath arrived in Khayelitsha in around 2005. He opened three offices where his vitamins were distributed from. Posters were put up on the bridge, at the taxi rank and bus and train stations. The people’s understanding of Rath’s message was that antiretrovirals (ARVs) were toxic and that he was encouraging people not to take them, but to take his vitamins instead. They also understood him to be saying that his multivitamins were a cure for HIV. The posters with his messages confused people. People who were sick, but had not yet started taking ARVs became reluctant to start and others stopped the regimen. I am aware of many cases of people who have been confused by Rath and Sanco and who have lost their lives because of them.”

The Guardian also features another hero in this case, veteran anti-apartheid campaigner and HIV positive Zackie Achmat who founded the Treatment Action Campaign.

And just to bring this back on topic does anyone remember Jaquelyn McCandless MD, the retired sex therapist who became an autism expert when her granddaughter was diagnosed and is now a DAN! practitioner and author of the book, Children with Starving Brains? She has also been busy in Africa recruiting HIV positive women for a “study” into the effects of low dose naltrexone on AIDS. Two years ago she was in Liberia but that cannot have worked out because the study has moved to Mali.

Naltrexone is a recognized treatment for alcohol and drug abuse and according to Wikipedia has also been suggested as a treatment for erectile dysfunction in men and smoking in women and Crohn’s disease. Low dose Naltrexone has also been suggested for multiple sclerosis,  Parkinson’s, cancer, autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, and central nervous system disorders. And it has also been suggested as a treatment for, you’ve guessed it, Autism.

Another brave maverick doctor with a quack cure for everything heads for Africa. I wonder if Ben Goldacre wants to write another book.

September 14th, 2008 Posted by Mike | Quackery, journalism | 4 comments

Placebo effect in autism

PLACEBO EFFECT

By happy coincidence I have just read a very interesting article on the placebo effect in New Scientist and listened to  two radio broadcasts on the same subject from Ben Goldacre. There are also discussions of both broadcasts here and here on Ben’s Badscience blog.

Placebo effect is often used disparagingly with reference to the anecdotal evidence for alternative and complementary therapies. There is a common misconception that the placebo effect is not real. Patients are deluding themselves. What they really need is a dose of allopathic medicine with those expensive molecules created by big pharma preciely targeting the locus of the disease in the body and eliminating it.

Both the article and the broadcasts challenge that idea. As Ben says in one of the broadcasts, if we support evidence based medicine we have to admit that according to the evidence the placebo effect is real. He gives some striking examples:

• Patients improving with their pacemakers switched off.
• Branded painkillers proving more effective than unbranded ones.
• Placebo proving as effective as some medications for irritable bowel syndrome.
• People who knew they were on placebo reporting benefits.
• Some people even managed to experience negative side effects of a drug while on placebo.

Ben makes the point that it is not the pink pill (though pink placebo pills do work differently to blue placebo pills) or the faux acupuncture or the placebo pain control cream that is working. Within the total context - the white coat, stethoscope, diplomas on the wall, intangibles like bedside manner etc - the pill may seem to be effective. But the placebo effect is more to do with the total doctor/patient relationship. The placebo effect works with real medicines as well as placebos. Patients who knew they were receiving morphine reported less pain than patients receiving the same dose without being told.

The challenge now is to fully understand the complexities of the placebo effect and use it effectively and ethically to improve patient care and patient outcomes. We may have something to learn from the alternative therapists. The ones who truly believe in what they are doing are probably very good at making full use of the placebo effect even if they do not fully understand it.

OUR EXPERIENCE

We experienced this with a homeopath and a practitioner of the Bowen Technique, a light touch massage. At the time we were having a hard time. Our son was getting nothing from health or education services and was severely stressed, as were we all. The benefits we got from our sessions were simple. They listened. They were sympathetic. They were gentle with us. They were such nice people. They really wanted to help us. They really believed they could help us and we wanted to believe. I tried some of the therapy myself but there was something not quite right about the guy doing the massage. We developed a sense of unease and the placebo effect diminished.

When I discussed the apparent benefits with our son’s paediatric psychiatrist he dismissed it airily as the power of suggestion. When my son had a meltdown in his office on his first visit and had to be physically restrained I could not help wishing that this psychiatrist could calm somebody with the power of suggestion.

AUTISM AND PLACEBO 

The placebo effect does not mean that alternative therapies work in the sense that their theoretical underpinnings are correct. But it is such a powerful effect that it may be working through the therapy in some cases even if the therapy per se does not work.  If we accept that one of the major causes of challenging behaviour in autistic children is the mismatch between their social understanding and the expectations of family, friends or school then an obvious way to help them is to revise our expectations. Electing for any type of therapy effectively does that.

BEHAVIOURAL EXAMPLE

This has happened many times in my career. A pupil is acting inappropriately. Attempts to control the behaviour are not working. We stop and carry out a functional behavioural analysis. We think we have stopped intervening while we collect baseline data. But from the child’s point of view we have changed our intervention. And so his behaviour changes. And we have changed ourselves as well. If I am charting incidents I feel in control. I am no longer challenged by the situation.  I no longer feel challenged by the child. I no longer provoke the behaviour I am seeking to control.

BIOMEDICAL EXAMPLE

I go to my alternative practitioner who tells me my child has gut problems that are causing his behaviour. We need a special diet and some supplements. It is not his fault. It is my fault for feeding him the wrong stuff. So I stop blaming him for his behaviour. I cut the kid some slack while waiting for the diet to kick in. I change and my child responds. I credit the diet and the doctor who prescribed it.

I am not sure if those two examples are strictly speaking the placebo effect. But they fit the general pattern of a total context having the power to explain what is happening more fully than the obvious recourse to the pink pill, the chart or the change of diet.

Ben’s second programme concludes with a doctor arguing that the power of placebo works best in those conditions were there is not a specific disease pathway amenable to a pharmaceutical magic bullet. Autism is very much like that. Yet the alternative therapists who infest our community claim precisely the opposite. They believe they know the precise biomedical pathways that lead to autistic behaviour and claim to have targeted interventions for each one. Mainstream medicine cannot claim much in the way of moral high ground in relation to autism. But its acknowledged ignorance and impotence in the face of this enigmatic condition is surely preferable to such hubris?

August 26th, 2008 Posted by Mike | Quackery, biomedical interventions, science | 6 comments

The unjustified abuse of Paul Offit

Dr Gordon is aggrieved

Over at Respectful Insolence, Science Blogger, Orac has been visited by Dr Jay Gordon in the comments section of his blog, Dr. Jay Gordon: No vaccines needed, just quit eating cheese and ice cream. Dr Gordon, you will remember, is a paediatrician to the children of the rich and famous, including Jenny McCarthy’s son Evan. He appeared with her on the Larry King Show when she tried to shout down Dr Tayloe of the American Association of Pediatrics. He appeared with her on the platform of the Green Our Vaccines demo which was actually an anti-vaccine campaign, as evidenced by the slogans on many of the banners. He enjoys being feted on a yahoo group devoted to Jenny McCarthy and her ideas. Recently he used this group to make disparaging remarks about Paul Offit, which reappeared in the comments section of Respectful Insolence

“From: Jay Gordon
Date: Fri, Jul 25, 2008 at 7:44 PM
Subject: [JennyDCAutismRally] I’M TIRED OF THE DISRESPECT FOR DR PAUL OFFIT
To: JennyDCAutismRally@yahoogroups.com

Dr. Offit is a tireless advocate of vaccination and a respected medical authority.

I am tired of hearing people refer to Dr. Offit as a “shill” and a dishonest profiteer willing to lie repeatedly. I tired of hearing people on this list imply that he lacks integrity, hides his profits and is a disgustingly disingenuous man.

Actually, I’ve decided I’ll never tire of people say those things about Dr. Offit. Carry on!!!”

Dr Gordon appeared on Orac’s blog to complain that he was not anti-vaccine; that he was a good man and a good doctor and we should not be mean to him by countering his off beat ideas with hard science and evidence based medicine. His message can be summarized thus;

Don’t be mean to good people. They are only trying to help and what if they are right and you are wrong?

Well I have news for Dr Gordon. Asking for hard evidence is not being mean. And if we ask and you come back with the same old nonsense while still failing to provide any evidence, you will get laughed out of court. If you were a worried parent or even an ill-informed journalist  we would probably give you more of our time and patience and try and explain things to you. But you are a doctor, a national media figure with a following amongst parents of autistic children. When giving health advice it is your job to check the facts and get it right. What are we to make of this, where Orac quotes you from an interview you recently gave to Cookie Magazine?

I think that the public health benefits to vaccinating are grossly overstated. I think that if we spent as much time telling people to breastfeed or to quit eating cheese and ice cream, we’d save more lives than we save with the polio vaccine.

I also happen to think that Dr Offit is good people. He is trying to help and doing a very good job with the rotavirus vaccine he helped to develop that is now saving lives. What if Dr Offit is right and Dr Gordon is wrong? Both have years of clinical experience. Dr Gordon somehow thinks his clinical experience entitles him to disregard the collective experience of his fellow pediatricians at the AAP. His clinical experience even trumps the evidence from clinical trials. Dr Gordon may be right to have such unbridled regard for his own professional judgement. But we have the right to a better justification than, “because I say so.” He may also be right to ask for a respectful hearing and for people not to be rude. In which case he ought to apologize to Dr Offit for his own rudeness in maligning him behind his back, in a forum where he had no right of reply.

Dr Offit is abused

Unfortunately this sort of behaviour, maligning people with whom you disagree instead of engaging in a respectful discussion or debate about the issues, seems to be a standard response from some of the more vocal purveyors of anti-vaccine propaganda linked to autism. David Kirby, writing on the Huffington Post, described Amanda Peet as

a well-meaning but grossly misinformed actress who is guided by a doctor who will likely make money from his own work helping to develop a childhood vaccine.

Amanda Peet was worried about vaccines. She did her research, not like that other “grossly misinformed actress,” Jenny McCarthy, who googled autism and clicked on an advert for quack autism treatments. Ms Peet asked her paediatrician brother-in-law. He arranged for her to speak with Dr Offit whose explanations eased her concerns. And what sort of a slur is that supposed to be on Dr Offit? He gets paid for helping to develop a life saving vaccine and of course that equals conflict of interest. Is David Kirby conflicted because of his close ties to advocacy groups like Generation Rescue? Should we disregard the message he brought on his recent visit to London because that trip was sponsored by anti-vaccine organizations? Or should we question him on the strength of his argument and his knowledge?  

Jay Gordon agreed with Kirby on Orac’s blog and held up an execrable piece of journalism that has been roundly condemned by my fellow bloggers Orac, Kev and Autism Newsbeat as evidence.

I would find it easier to take Dr Gordon seriously if he was at least consistent and publicly condemned the slurs and character assassinations that are regular repeated about good people like  Dr Offit. I expect he knows JB Handley (known as “Brad” to his friends). They would have met up at the Green Our Vaccines rally. Brad helped to set up the organization, Generation Rescue, that sponsored the rally and has recently added Jenny McCarthy to its board. Generation Rescue always had money for full page adverts in national newspapers. Now that Jenny and boyfriend Jim Carrey are attracting stars like Britney Spears to Generation Rescue fundraisers they are branching out and adding to their web presence. Brad already has a track record for cybersquatting but the latest antic by Generation Rescue is both puerile and malicious.

They have set up a website, PaulOffit.com that traduces the man’s motives and his reputation. Perhaps not enough people were reading Brad’s rants against Offit on his Age of Autism website, the anti-vax alternative to the Autism Hub. I wonder how long a similar site, BradHandley.com would stay up before Handley’s lawyers intervened. Kev was almost forced to stop blogging with Left Brain Right Brain when threatened by the long arm of Brad Handley’s legal department. The “offending” material has now been removed and Kev had to apologise. That’s the way to settle an argument about autism. Use your wealth to try and bankrupt a fellow parent who disagrees with you.

Still, if all the rumours are true and Paul Offit is indeed a multimillionaire from the proceeds of his “vaccineering” and has the power and money of the drug companies at his disposal, perhaps he will put it to good use and sue the pants off his detractors. Somebody ought to.

Footnote

Friends have suggested that my tone in this post is angrier than usual. I apologize for the tone but I am angry with journalists who curry favour with anti vaccine groups and distort the evidence to suit their purpose. I am even more angry with doctors who play up the risks of vaccines and downplay the risks of vaccine preventable diseases.

According to The Measles Initiative in 2000 757,000 children died from measles. A mass vaccination campaign has reduced that figure to 242,000 children. In Africa there has been a 90% reduction in deaths from measles but there is still a lot to do in parts of Asia.

According to the CDC 

Rotavirus is the leading cause of severe acute gastroenteritis among infants and young children, accounting for an estimated 527,000 deaths among children aged <5 years worldwide in 2004 (1,2). In the United States, rotavirus causes few deaths (20–60) each year, but remains a substantial cause of morbidity among children, resulting in approximately 55,000–70,000 hospitalizations, 205,000–272,000 emergency department (ED) visits, and 410,000 physician office visits (3). In the continental United States, rotavirus activity follows a distinct winter-spring seasonal pattern (4). In winter months, approximately 50% of hospitalizations and ED visits and 30% of outpatient visits for acute gastroenteritis among U.S. children aged <3 years are caused by rotavirus (5).

Dr Offit’s vaccine, Rotateq, is already having an impact on those figures and has the potential to prevent a lot of those estimated 527,000 deaths among children aged <5 years worldwide. The hate campaign against him does make me very angry and on second thoughts I do not apologize for the tone of this post.  According to Aristotle,

 ”Anyone can become angry. That is easy. But to be angry with the right person, to the right degree, at the right time, for the right purpose and in the right way - that is not easy.”

July 31st, 2008 Posted by Mike | Autism, Quackery, science, vaccines | 20 comments

David Kirby in London

I suppose the people behind Green Our Vaccines  had a plan. While Jenny and Jim were grabbing the headlines in America David Kirby was dispatched to the UK to address Parliament, no less, and give a public lecture followed by press interviews and media coverage. While the Jenny and Jim Show drew the expected response from critical thinkers in the blogosphere it was largely ignored by the mainstream media. Apart from the celebrity chasers nobody thought a rallying of the faithful to march against vaccines was particularly newsworthy.

Over in the UK poor old David Kirby managed less than that. My thanks to Kev for persuading his MP to attend the parliamentary briefing. He was the only one to turn up along with 4 peers of the realm. The media ignored the event completely. Not even the Telegraph turned up. Perhaps their previous execrable piece on vaccines and autism that the splenetic Dr Aust deals with so admirably, was a blessing in disguise. They are probably too embarrassed to let a junior hack anywhere near the story for a long time to come.

Perhaps the press had all gone to Regent Hall for his public lecture. Thanks to Rob Hinkley for going along and giving us this account. No press there either.

Kirby’s visit had been advertised partly as a chance to meet the press, but there were no press (no print, no radio, no TV, no internet, nobody) at the lecture. Kirby said that he’d been interviewed by the BBC but they’d decided not to broadcast it, and he said he’d been commissioned by the Daily Mail to write an article but then they’d decided not to publish it. One lady in the audience (I got the impression she might have been one of the organisers of the event) said she was a journalist [Sally Beck?] but hadn’t been commissioned by anyone to write about what Kirby had to say, and that although she knew all UK science journalists had been notified about the lecture “not one of them has even phoned to ask if they could come”.

Clifford Miller knew why.

“I’ve got good information that our Department of Health threatens DA-notices against the press” over vaccine stories, and “I’ve got no confirmation of this from the press but I have it on good authority from within the civil service … Is our government using a spurious security argument to protect Glaxo Smith Klein?”

Yes, Clifford. You can read Defence Advisory notices that the Department of Defence issues here. No mention of vaccines. Shame.

Perhaps the media are finally wising up to the fact that these tales of doom supported by dubious science are no longer newsworthy. I hope so.
 

June 8th, 2008 Posted by Mike | Quackery, journalism, vaccines | 2 comments

Green Our Vaccines - update

The Green Our Vaccines Rally in Washington went off as expected. According to journalist and Vaccine author, Arthur Allen there were around 1500 in attendance. This news channel said there were hundreds but I watched the whole march go past on a traffic cam and estimated no more than 2000 so I will go with Arthur’s figure. Do the numbers matter? I think so.  The autism-vaccine connection has been espoused for at least 10 years now. There are around 5000 cases in the Autism Omnibus Proceeedings. Over half of these were filed in a single year (2003) and since then numbers have dropped steadily.

Table of petitions filed is taken from The National Vaccine Injury Compensation Program Statistics Reports

This shows that there was a very brief flurry in which thousands of parents signed up to the view that their child’s autism was vaccine related followed by a sharp decline. I find this table interesting for two reasons.

First, if either the increasing burden of vaccines themselves or the increasing burden of ethyl mercury in the thiomersal containing vaccines (TCVs) was behind the increase in autism prevalence that was recorded throughout the 1990s it is not apparent in the number of petitions filed for compensation. Whatever the reason for the increase in prevalence parents at the time did not connect their child’s autism to vaccines.

Second, once the idea of an autism epidemic was mooted and vaccine damage was posited as a possible cause, lots of autism parents looked back and said, “Maybe.” And a significant few said, “Definitely,” and took action. Hence the bulge in the statistics for vaccine damage claims.

At the same time scientists carried out studies and found no connection between vaccines and autism. Consequently very few additional parents have jumped onto the vaccine-autism bandwagon. So we have a highly motivated group of parents, brought together by  circumstances at a given moment in time, who now feel marginalized. They are convinced that they are right and equally convinced that they are victims of a conspiracy to deny them justice.

This is why the numbers are significant. A growing campaign, fuelled by new recruits would have attracted a far bigger crowd than the one seen in Washington this Wednesday. What we saw instead was a rump of increasingly embattled activists who sustain each other via a shared mythology. The more they are challenged the closer they cling together.  They comfort themselves with the thought that science is on their side. But in reality they can only maintain their world view by their denial of science. 

June 6th, 2008 Posted by Mike | Autism, Quackery, autism epidemic, parents, science | 3 comments

The Great Autism Rip-Off

Over on Left Brain Right Brain Kev has just blogged this article in the Mail. The article starts in typical tabloid style:

There is little hope given to parents of children with autism. Mainstream medicine offers no explanation for the cause of this life-long learning disability, thought to affect one in 100, and there are no effective treatments.Perhaps the most cruel characteristic of the condition, which impairs communication development and ability to relate to others, is that children often develop normally until about two years of age, when they suddenly ‘regress’, becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.

Many never take part in mainstream education and some require full-time care, even as adults.

In the absence of solutions, desperate parents are increasingly turning to the world of alternative medicine in their search for a cure.

Or does it? There are the usual buzzwords - hope, desperate, cruel. But autism is described as a life-long learning disability, not strictly true but better than the usual this devastating disease. And the headline

The great autism rip-off …

How a huge industry feeds on parents desperate to cure their children

suggests more substance than I have come to expect from a paper that has done more than most to promote Andy Wakefield and the MMR scare over autism. Now they are investigating the claims of alternative therapists who sell dubious treatments to parents on the back of the media hype about vaccines and autism. The world is turning.

Journalist, Barney Calman posed as a parent and contacted 5 different Defeat Autism Now (DAN) practitioners. All charged serious money just to talk to the parent on their own and suggested an expensive battery of tests without ever seeing the child. All were happy to discuss a variety of treatment options and claimed great success while pointing out that their therapies might not work for a minority of children.

This is the beauty of quackery. You pay money for tests that indicate treatment. But they do not indicate if the treatment will work. So the parent moves on to the next practitioner in the hope of finding the one therapy that will work for their child.

First up was a former GP, David O’Connell who took £440 in consultation fees without ever seeing the child and recommended a barrage of tests on blood, stool and urine costing a further £1546. His recommended treatment is Secretin! He claims that previous studies were flawed. What, even this one? As I wrote elsewhere

The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

O’Connell goes on to state that

I’ve not published my findings in peer reviewed journals because I am unwilling to submit children to double blind trials.

But he will submit them to unproven treatments like Secretin at £450 monthly injection and immune globulin at £550. These quotes are revealing.

‘The only limiting factor is money.’

[...]‘The more injections a child has, the better the result,’ he says.

‘Autism can be a life sentence if you do nothing about it. And the sooner you start treatment, the more chance it will work.’

Parents used to be blamed for causing their child’s autism in the bad old days of Bettleheim’s refrigerator mothers. Now they are encouraged to blame themselves and then pay large sums for unproven and potentially harmful treatments in order to ease their guilt.

Next up was

Dr Asha Rekha Chagarlamudi, a locum GP who runs ‘The Autism Clinic’ one day a week from her home, a semi-detached house on a private estate in Bromley, South-East London.

She recommended IV chelation (Remember Abubakar Tariq Nadama?) and Hyperbaric Oxygen Therapy. (HBOT) She does not seem quite as mercenary as O’Donnell but I was a little perturbed because she is the medical advisor to the Autism Treatment Trust in Edinburgh. That is an eight hour drive away, which is not very convenient if the non-medical Dr Amet in Edinburgh needs treatment advice. Like Dr Chagarlamudi Dr Amet has an autistic child herself and was featured in this blog.

Dr Amet makes the striking claim that her series of blood and urine tests (£480) will give a complete picture of your child’s health and what has caused his autism. Her follow up consultation (£400) will discuss the test results and devise a treatment plan consisting of a special diet and supplements contains no mention of the IV chelation and HBOT recommended by her medical advisor 440 miles away, down in Kent, which is probably for the best.

Surprisingly, the cheapest therapist is based in that bastion of privilege and private medicine, Harley Street. Dr Damien Downing will do an initial consultation, urine and blood tests, follow up and seven rounds of transdermal chelation for just under £700. The only drawback is that transdermal chelators do not work

[S]ome enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

Calman also went to Dublin to meet

Dr Gabriel Stewart, a specialist in chelation therapy for adults, who tells me he tries to dissuade parents from giving their autistic children intravenous infusions ‘not because it’s dangerous, but because it isn’t effective in clearing mercury from the blood’. Consequently, Archie was not suitable for treatment.

He also warns that some ‘DAN! doctors’ are less than reputable.

‘All you need to do is attend one conference in the US and you can say you’re a DAN! doctor - and many of them aren’t medically trained.’

All this is true. It is also true that Dr Stewart is also a DAN doctor. While his refusal to use IV chelation on children is commendable his website reveals that he is a member of ACAM, whose ambiguities over the use of EDTA were exposed at the time of Tariq Nadama’s death. And he has bought into the entire DAN protocols for treating autism. The scientific bases for these protocols are being seriously challenged by expert witnesses in the Omnibus Autism Proceeedings that are taking place in the USA. See this example where the expert testimony of Dr Dean Jones is discussed.

All in all, an excellent piece of journalism from Mr Calman, marred only by a factual error in a sidebar on What is Autism. The prevalence figure of one in a hundred refers to the entire autistic spectrum. So called classic autism with associated learning difficulties is closer to 1 in 500.

June 1st, 2008 Posted by Mike | Autism, DAN!, Quackery, biomedical interventions, chelation, mercury, vaccines | 4 comments

The Peer and the prick - vaccines and autism.

Lord Hodgson, who is sponsoring David Kirby’s speaking engagement at the Palace of Westminster, has made good use of his position in the House of Lords to question government ministers on vaccine safety. He is particularly interested in thiomersal/thimerosal and has even enquired after its use in cosmetics.

On December 16, 2002

Lord Hodgson of Astley Abbotts asked Her Majesty’s Government:

How many of the standard vaccinations that children receive in the United Kingdom contain thiomersal; for how many years these standard vaccinations have contained thiomersal; and what research has been carried out into the cumulative effects of the mercury content of thiomersal on infant children.[HL429]

Lord Hunt of Kings Heath replied:
Vaccines containing thiomersal (a mercury-containing compound known as thimerosal in the United States) have been in use for over 60 years. The only vaccines used in the routine United Kingdom childhood immunisation programme which contain thiomersal as an excipient in the final product are diphtheria, tetanus and whole cell pertussis (DTwP) and diphtheria and tetanus vaccines.

In 2001, the Committee on Safety of Medicines (CSM) reviewed the available data relating to possible neurotoxicity of thiomersal in vaccines and advised that there is no evidence of harm caused by doses of thiomersal in vaccines. The CSM concluded that the risk: benefit balance of thiomersal-containing vaccines remains overwhelmingly positive. The Institute of Medicine (IOM) in the United States also published a detailed review of the evidence relating to possible neurotoxicity of thiomersal in vaccines in October 2001. The IOM findings were consistent with the CSM conclusions.

We are aware of two new studies in the UK looking at the relationship between mercury in vaccines and neurodevelopmental disorders in children. One of these studies is funded by the Department of Health and uses the Avon Longitudinal Study of Pregnancy and Childhood. The other study is using the General Practice Research Database and is funded jointly by the World Health Organisation and the Public Health Laboratory Service (which receives its funding from the department). Neither of these studies supports an association between thiomersal exposure through the UK programme and neurodevelopmental disorders in children. The results of these studies have been made available to the department and a summary of the findings is available in a report to the US Congress which has been placed in the Library.

In addition to the above studies, evidence from a recent study by M Pichichero et al (published in the November 30 2002 Lancet) showed that giving vaccines containing thiomersal does not raise blood levels of mercury. The findings of this paper suggested that ethylmercury is rapidly eliminated from the blood after administration intra-muscularly. The levels of ethylmercury in the blood were no higher than in samples taken at birth—before any vaccines had been received.

On January 27, 2003

Lord Hodgson of Astley Abbots asked Her Majesty’s Government:

Whether each child will by its 16th week of life have received, as part of the standard diphtheria, tetanus and pertussis (DTwP) immunisation programme, 150 micrograms of thimerosal which, in turn, contain 75 micrograms of mercury; and, if not, how much each child will receive.[HL1023]

The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath) replied:

The recommended vaccine for routine immunisation of children against diphtheria, tetanus and pertussis remains diphtheria, tetanus and wholecell pertussis (DTwP) vaccine. A course of primary immunisation with DTwP vaccine consists of three doses starting at two months, with an interval of one month between each dose. Each dose of the standard DTwP vaccine contains 50 micrograms of thimerosal (containing 25 micrograms of ethylmercury). Therefore, by 16 weeks the total thimerosal exposure would be no more than 150 micrograms (75 micrograms ethylmercury).

This is significant. In 2003 the exposure to thiomersal in the UK was the same as that in the USA in 1987. Then the USA added the thimerosal containing vaccines HIB and Hep-B to the infant vaccination schedule. These raised the exposure levels for ethyl mercury in 6 month old infants who were fully vaccinated from 75 micrograms to 187 micrograms.  Throughout the 1990s recorded rates for autistic spectrum disorders rose both in the UK and in the USA. In fact the UK has consistently recorded higher rates compared to the USA. The headline figure in the US is currently 1 in 150. In the UK it is around 1 in 100.

Whatever the cause for the increase, one would expect it to be the same for two countries who share so many other features. Thiomersal is obviously not the reason for the increase in the UK. So why invoke it to explain the increase in the USA? And why is our noble lord so concerned to invoke thimerosal in the UK? This is even more pertinent when we consider Lord Hodgson’s next foray into the world of vaccines, which confirmed that the infant vaccine schedule in the UK is now thimerosal free. 

On October 11, 2004

Lord Hodgson of Astley Abbotts asked Her Majesty’s Government:

What is the difference in cost between Pediacel and the vaccine currently in use.

The Parliamentary Under-Secretary of State, Department of Health (Lord Warner) replied:

Pediacel costs over £5 more per dose than the vaccines previously used.

Lord Hodgson of Astley Abbotts asked Her Majesty’s Government:

Whether Pediacel will be the only form of vaccine available for the immunisation of children against diphtheria, tetanus, pertussis, HIB and polio, or will others be available on request.

Lord Warner replied: 

For infants, Pediacel will be the only vaccine supplied by the National Health Service because it provides the best protection against these serious infections.

Lord Hodgson of Astley Abbotts asked Her Majesty’s Government:

Whether the inactivated polio vaccine, part of the new five-in-one vaccine, is incompatible with the preservative Thiomersal.

Lord Warner replied:

Thiomersal is not a component of the new vaccines as it would render the inactivated polio vaccine component ineffective.

So there you have it. There was never very much thiomersal in the UK vaccine schedule and now there is none. Case closed. But two months later Lord Hodgson was back on the case.

December 8, 2004

Lord Hodgson of Astley Abbotts asked Her Majesty’s Government what they propose to do to increase the level of public trust in their vaccination and immunisation programme. The noble Lord said:

My Lords, the trigger for my decision to ask this Question was the Government’s sudden decision in August this year to introduce a new five-in-one child vaccine called Pediacel. Pediacel replaces the four-in-one vaccine previously used and adds polio to the diptheria, tetanus, pertussis and haemophilus influenzae type B—HIB—vaccine. The other critical by-product of the introduction of Pediacel has been the withdrawal of the preservative thimerosal which consists of 50 per cent ethyl mercury.

The withdrawal of a toxin as potentially harmful as that contained in thimerosal from infants’ vaccine, however small the amount contained therein, is a positive development on which the Government are to be warmly congratulated. However, I am not clear as to why this step was taken, if one is of a cynical turn of mind, in early August during the holiday season when minimum press comment could be expected.

He is still pursuing the argument that thiomersal was dangerous to health and had no place in childhood vaccines. He is implying that the government knew this all along and sneaked the thimerosal out of the vaccines in the same underhand way that they had originally sneaked it in. There follows a good bit of politicking on the same theme before he comes to the scientific evidence for thiomersal’s harmful nature

Most recently, a study by Doctors Hornig, Chian and Lipkin of Columbia University, published online on 8 June 2004 in the Nature publication, Molecular Psychiatry, indicated that postnatal exposure to thimerosal can lead to the development of autism-like damage in autoimmune disease susceptible mice. This reinforces previous studies, such as the works of Dr Mark and Dr David Geier, showing that a genetic predisposition in combination with certain environmental triggers can cause an increased risk of an adverse reaction.

I do not know who led Lord Hodgson to Mady Hornig’s infamous mouse study. It was probably the same person who introduced him to the Geiers’ less than monumental contribution to the literature of autism. I do not know if he actually read this tosh or was merely informed about it as part of a briefing. If he read it he was obviously not qualified to judge its merits. You might describe it as a failure of Peer review.

The noble lord then continues with his twin themes of government incompetence in undermining confidence in their own vaccine schedule and simultaneously implying that the schedule is not safe anyway. But this combination of politicking and scientificking is fundamentally dishonest. Lord Hodgson advocates for the sort of bad science that has had a demonstrable effect in undermining public confidence in vaccines on both sides of the Atlantic. He contributes to the scare stories and then admonishes the government for is ham-fisted response to those scare stories. He continues:

To a Written Question I put down on 22 January 2003, the noble Lord, Lord Hunt of Kings Heath, the Minister’s predecessor, answered that,

“there is no evidence of harm from thiomersal contained in vaccines. Therefore, the CSM advised that the benefits of immunisation with thiomersal-containing vaccines outweigh any potential risks of vaccination”.—[Official Report, 22/1/03; col. WA 101.]

Such responses exemplify the Government’s reaction to the thimerosal debate over the past two years. Until August this year the Government gave the impression that it was much ado about nothing and there was no reason for thimerosal to be withdrawn. In August, at the height of the holiday season, thimerosal was suddenly withdrawn.

Whether thimerosal does have an effect on certain autoimmune disease sensitive infants may be proved or disproved in times to come or there may never be a conclusive result. But what does matter is that the Government should maintain the highest degree of transparency and openness in their communications with the public in this important and sensitive area.

There we have it. The only thimerosal debate in the UK that I am aware of is the one initiated by Lord Hodgson. He knows full well why thiomersal (I will stick with the UK spelling, even though the noble lord has recently taken to using the American version) was removed. Pediacel does not require it. In fact thiomersal reduces the potency of the IPV component. There has never been any firm evidence to suggest that thiomersal causes harm to people.

Lord Hodgson is arguing from some very poor studies that it could cause harm and what if it did and what is the government going to do about this hypothetical danger that is completely lacking in empirical evidence and no wonder people are losing confidence in the vaccine programme and just look at MMR and its ALL YOUR FAULT. And so it goes on. Etc. etc. for another 1300 words.

Lord Hodgson is an intelligent and able politician. Unfortunately he has been sold on some very dubious science and agreed to lend his name to a PR exercise fronted by David Kirby. Perhaps he should be told.

May 28th, 2008 Posted by Mike | Autism, Quackery, mercury, politics, vaccines | 6 comments

David Kirby in England

It had to happen. David Kirby, the erstwhile journalist and ersatz apologist for the mercury malicia is visiting Britain, paid for by Generation Rescue. There will be a public lecture on Wednesday 4th June, 6:30pm at Regent Hall,  Oxford Street and  a  book signing and Q&A on Friday 6th June, 4:00pm at Gudrun Jonsson’s Biopath Centre in Kensington whose

unique philosophy focuses on a combination of the traditional healing arts from the sub-continent, biopathic treatments, and the latest scientific health and beauty advances. By combining these three concepts, Napier Road has developed an innovative and refreshing approach to health and beauty, which aims to reverse the degenerative processes of the body and promote general wellbeing.

So no surprises there, then. What is surprising is Kirby’s opening gig at the Palace of Westminster. According to an email circulating on numerous web forums

Mr. Kirby will speak about recent legal, political and scientific developments in the United States in the ongoing vaccine-autism controversy. The briefing is open to Peers in the House of Lords, Members of Parliament, their Staff, members of the Media, and Invited Guests. It is sponsored by His Lordship Robin Hodgson, Baron Hodgson of Astley Abbotts, Shropshire.

Kirby and a biopath makes sense. Hack ‘n’ Quack sounds about right. But what is the connection between Kirby and Robin Hodgson?  Hodgson  was deputy chairman of the Conservative Party from 1997 to 2000 when he became a life peer. His wife is chairman (sic) of the Conservative Women’s Association. As a member of the House of Lords Robin Hodgson acted as a front bench spokesman on Trade & Industry and Home Affairs between 2002-2006. I do not know if he is a member of the All Party Parliamentary Group on Autism. But he revealed that he has a son with ADHD when he introduced a parliamentary debate on the subject of Attention Deficit Disorders on February 5th, 2003.

Lord Hodgson on ADHD

Families with ADD/ADHD children need help. To get help, they need joined-up government across the Department of Health, the Department for Education and Skills and local social services. The key is early diagnosis, so that families, schools and, where appropriate, social services are aware of the condition. Taking medication can then become the norm. By contrast, children who are diagnosed later have probably already experienced several years of underachievement and failure and are more likely to be oppositional and unprepared to co-operate with medication, thus in many cases condemning themselves and their families to a living hell.

We need to spread more awareness of the condition among the teaching profession. It is estimated that 90 per cent of teachers have had no special training on how to recognise the symptoms of ADD/ADHD.

Most importantly, we need immediately to begin a programme to build awareness among social workers. For the most part, they do not seem to appreciate the strain on a family living with a severely ADD/ADHD child. There is therefore little or no respite care. Rather, too many social workers have been inclined to see erratic behaviour by a child as evidence of child abuse. No one suggests that there is any malice in that; I am sure that everyone’s intentions are good; but there is profound ignorance that we must tackle.

He could just as easily be talking about autism and the problems we face from inadequate services provided by people without proper training or resources who are ill-equipped to understand our needs. And there is much in the debate in similar vein. There is also much else that we are familiar with.

Lord Hodgson on Quackery

Although medication undoubtedly has an important part to play, it is not the only help for which parents may reach. Indeed, for some children it does not work at all; for others it may lose its effectiveness in their teenage years. Alternative approaches can be tried: for example, homeopathy, specialist exclusion diets, cranial osteopathy, megavitamin therapy, together with behaviour modification therapy, psychotherapy and others. We need to know more about their relative success and to inform parents, teachers and social workers about them.

Lord Hodgson on Thimerosal

So why has there been that increase in those conditions and what can we do to reverse the trend? It is unlikely that there is any one single cause. Genetics and heredity will probably be found to play a significant part. But what other factors are in play? One matter looks increasingly likely to be a significant contributory cause: the requirement in this country that every baby receives three injections in the first 16 weeks of life as immunisation against diphtheria, tetanus and whole cell pertussis—whooping cough, to laymen—(DTwP). As I understand it, each standard dose of the vaccine used in the UK contains 50 micrograms of a substance called thimerosal. Each dose of thimerosal contains 25 micrograms of ethylmercury. Mercury is a highly toxic substance. That means that, by the 16th week of life, every baby in this country, with an inevitably fragile immune and nervous system, has been injected with 75 micrograms of ethylmercury.

Lord Hodgson is not anti-vaccine

I must make it clear that this is not an attack on immunisation. Immunisation is an important part of child healthcare. But it is a question of what goes into the vaccines. Thimerosal is not an essential part of a vaccine; its function is as a preservative. There is a mercury-free vaccine licensed in this country under the name Infanrix DTaP. Although it is more expensive, that would be a small price to pay compared to the cost of a child with neurological damage.

But he does believe that a percentage of children are vulnerable to damage from mercury in the quantities that used to be present in the UK vaccine schedule.

The figure that has been suggested to me is 18 per cent of the whole.

Other contributions 

Other speakers took up some of his themes. Lord Colwyn praised the Feingold diet and stated that study after study backs Feingold’s theories. He proposed vitamin B6 as an effective alternative to Ritalin and also blamed hypoglycaemia.

Earl Howe (not to be confused with Geoffrey Howe) admitted to reading

a most persuasive paper recently published in the United States, which concludes that the likelihood of a causal relationship between mercury in vaccines and autism is very great. If that theory is borne out, it has the most profound implications. I wholly agree with my noble friend that a great deal more research is needed.

The Earl Howe found Lisa Blakemore-Brown equally persuasive.

The notion that a child may have several disorders running alongside one another has been powerfully explained by a British child psychologist, Lisa Blakemore-Brown. She used the metaphor of a tapestry to illustrate that a child may present with various threads of difficulty; for example, ADD combined with Aspergers, or ADHD with a language impairment. Those threads may appear to be the same as those in another child but each individual will have his own unique weave of problems. The key to helping a child is discovering what threads are there and how they are interwoven. I believe that Lisa Blakemore-Brown’s book, Re-weaving the autistic tapestry, should be required reading in every LEA—and in the Department of Health. It is very persuasive.

Blame the Parents

I first came across Lisa Blakemore-Brown at a conference where we were both speakers. She made an eloquent, somewhat emotional speech, that relied more on anecdote than data to raise the question of false accusations of Munchausen’s Syndrome by Proxy against parents of autistic children. There seem to be a number of potential pitfalls for parents of autistic or ADHD children.

1. Parents’ concerns about their child’s problems are dismissed. If they persist they are accused of MSbP.
2. Parents who claim their child has biomedical problems [either as a cause or a consequence of their autism/adhd] that need special diets and other alternative therapies are accused of MSbP.
3. The child’s behavioural problems are recognized but put down to abusive parenting. When the parents insist that their child is autistic/adhd they are accused of MSbP.

The Earl Howe actually spoke a lot of sense about MSbP in this debate. I would not be surprised if he had been briefed by Lisa Blakemore-Brown. Unfortunately she also believes in a vaccine induced autism epidemic. And, if we are to believe Aasa over on the JABS forum, Ms Blakemore-Brown is also responsible for bringing David Kirby to London.

From Peer to PR

Back in 2003 it may have been reasonable for Hodgson and others in the House of Lords to want more investigations into thimerosal in vaccines. They were right then and now to ask whether medication is necessarily the best answer to behavioural and neurological difficulties in children. They are to be applauded for taking up the thorny issue of false accusations against parents. But, while Lisa Blakemore-Brown may continue to weave all these issues into a single tapestry, five years down the line we have the science to say that thimerosal in vaccines is a broken thread. Kirby is not worthy of Hodgson’s patronage. Hodgson has allowed himself to be misled and misadvised in this affair.

May 27th, 2008 Posted by Mike | Autism, Quackery, vaccines | 5 comments

Judge Rotenberg Center - latest research

Side effects of contingent shock treatment

W.M.W.J. van Oorsouw(a) M.L. Israel(b) R.E. von Heyn(b) and P.C. Duker(a)

(a)Pluryn Werkenrode Groep (Winckelsteegh) and Radboud University, Nijmegen, The Netherlands
(b)Judge Rotenberg Center, Canton, MA, USA 

Received 20 August 2007;  accepted 29 August 2007.  Available online 22 October 2007.

Abstract

In this study, the side effects of contingent shock (CS) treatment were addressed with a group of nine individuals, who showed severe forms of self-injurious behavior (SIB) and aggressive behavior. Side effects were assigned to one of the following four behavior categories; (a) positive verbal and nonverbal utterances, (b) negative verbal and nonverbal utterances, (c) socially appropriate behaviors, and (d) time off work. When treatment was compared to baseline measures, results showed that with all behavior categories, individuals either significantly improved, or did not show any change. Negative side effects failed to be found in this study.

Research in Development Disabilities is a respectable journal with a well respected editor, Professor Johnny L. Matson. Professor Matson also edits Research in Autistic Spectrum Disorders. So I was surprised to see this abstract. I had assumed that Matthew Israel and the Judge Rotenberg Center were beyond the bounds of acceptable practise in  psychiatry.  Perhaps their reputation has not reached the  Netherlands. Just to make sure I have emailed the lead author.

But, surely Professor Matson is familiar with the controversy surrounding JRC? You would expect his journal to take a long hard look at a piece of research supporting electric shock treatment with Matthew Israel’s name on it before accepting it for publication. Yet the entire peer review process was completed in a just over a week. “Received 20 August 2007;  accepted 29 August 2007″ I find that remarkable and disturbing.

November 15th, 2007 Posted by Mike | Judge Rotenberg Center, Quackery, psychiatry, science | 22 comments

Jenny McCarthy: responding to criticism

First, an apology.

My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.

When reading the comments I noticed a number of common themes.  Liz summed up a lot of these themes in an insightful comment:

I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!

There are four main ideas here.

1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

2. Consequently they claim that there are no answers to autism.

3. Parents are not impressed by this and look elsewhere.

4. They find their own answers and their children make progress.

 These are very important points. When you get  diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.

Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.

“Autism:

This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.

Prevalence: up to 90/10,000 of those <16yrs old - estimates vary considerably. Sex ratio M/F = 3.

[...]

Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.

70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence.  15% will lead an independent life.

Apply for benefits (disability allowance if in UK).”

Fitzpatrick goes on to write,

“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”

Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.

NO HOPE or FALSE HOPE?

Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like ”there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.

CAUSE and EFFECT

Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve.  I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified

Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.

Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.

This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:

We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.

COMMONSENSE versus SCIENCE

There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:

The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.

Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to  work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.

But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.

Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)

We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.

Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.

JENNY and I.

Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!

Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.

YOU and I 

I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.

October 25th, 2007 Posted by Mike | DAN!, Quackery, autism parents, science, vaccines | 34 comments