Action For Autism

The case of Ben Haslam

Channel 4 News carried a worrying story on Monday, 14 July. While I would not go as far as my good friend Kev in describing it as evidence of fascism, it does raise serious questions about parental rights and the use of the law to decide issues of child welfare. The story concerns an autistic boy, Ben Haslam, who was making good progress at The Shires. I say “was” advisedly because Bedfordshire County Council, who were funding his 52 week a year placement, were due to cease payment at the end of the week. This was the result of a high court ruling which upheld Bedfordshire’s appeal against the decision by a Special Educational Needs and DISability Tribunal, aka SENDIST, that had upheld a previous appeal by Ben’s parents against Bedfordshire’s refusal to fund Ben’s place at The Shires.

From the news report it is obvious that Ben, who has severe learning difficulties and no spoken language has benefitted from his residential school placement. He used to constantly demand food and was clinically obese. He was incontinent. He was violent. He was self injuring and very unhappy. After 5 months at The Shires he has lost weight, is almost toilet trained and is a lot happier. As his mother says,

“It’s a pleasure to have him around. It really is a pleasure”

But happiness has a price. In Ben’s case it was £250,000 in annual school fees. This was too much for Bedfordshire who argued that they could meet Ben’s needs for less than half the price, £120,000 to be precise. It was not clear from the report whether or not they had included his need to be happy in their calculations.

Ben’s parents clearly do care about Ben’s happiness. It cost them £43,000, their life savings, to gather the evidence to support their case and hire expert legal representation to win their appeal. Now, after losing in the High Court, they face additional  bills for costs, including those of the local authority, of around £20,000.

Bedfordshire propose to educate Ben in a local authority special school and house him in a local children’s care home. Neither the school nor the care home are autism specific. If we consider Ben’s problems prior to going to The Shires, his previous local authority special school, which is now closed, did not exactly cover itself in glory. This is no disrespect to local authority special schools. I teach in one. But I remember two pupils with whom we struggled, who went on to make excellent progress at residential schools. I can think of others I have taught who would have benefitted from the 24 hour curriculum that specialist, residential schools can offer. There is no way that you can replicate 52 week total provision by talking a child into care and bussing them to a local authority special school for 40 weeks a year.

Bedfordshire claim that Ben’s case, like every other, is

“considered individually and according to a child’s specific needs.”

If true this marks a dramatic change from their position of 3 years ago when Bedfordshire were the subject of criticism from government because they were writing generic statements of educational need and leaving it up to schools to decide on provision instead of specifying what provision to make. In the view of the government minister, if this were general policy, Bedfordshire

“will not be complying with its statutory duty and determining the special educational provision in other cases, perhaps the majority of cases.”

So have Bedfordshire put their house in order? Can the Haslams place Ben in local authority care with any degree of confidence? It might help if Bedfordshire agreed to waive costs and remove at least one financial burden from Ben’s family. After all they did tell Channel 4 News that the relevant section of the law (section 20 of the Children’s Act)

“promotes partnership in meeting a child’s needs.” 

It strikes me that this is a very strange partnership if it is based on adversarial law and the parents are left making all the concessions and picking up the  bill for both sides of the legal proceedings. and the Haslam’s are not a unique case. The BBC disability forum, OUCH!, provoked some interesting comments on Ben’s case.

Take this from a Bedfordshire employee who knows Ben.

I work within Children with Disabilities in Bedfordshire, and have previously worked with Ben. To see the change in him is incredible, and shows that residential schools do offer the best facilities for children with severe autism as they provide a high level of care, knowledge, structure and consistency.

Or this:

Bosscat, you are absolutely right there is no effective provision for severe autism in Bedfordshire. Local provision is based on resources and not the needs of the children and for far too long Bedfordshire has been getting away with funding the cheapest option, which generally means inadequate and substandard provision for our most vulnerable of children. Children with severe autism need access to specialist support for their severe and complex needs; they need extended support beyond the school day, more than this authority can reasonably give.

Or this from a parent in Bedfordshire:

The day-school system is failing children with severe autism in Bedfordshire and lack of resources within the county means that many severely disabled children are being denied access to programmes, treatments and therapies that could significantly improve their quality of life - Ben’s transformation is an example of what can be achieved.

I am one of many parents who have no confidence or trust in Beds children Services. In Ben’s case (and countless others) they have demonstrated a complete lack of understanding and empathy, their sole purpose is to cause misery and despair for those children and their families who are made vulnerable by severe disability and an uncaring authority. It is my sincere hope that those officers responsible for this appalling situation are sacked or at the very least not employed by the new unitary authority that comes into effect next year, anyone who supports them is not fit to hold public office.

The £250,000 cost of care at The Shires School is an average figure when compared with other independent residential special schools offering the same level of support and care. This begs the question of how Bedfordshire can provide the same level of support and care for £120,000? The simple and short answer is that it can’t. It doesn’t help to open the local paper and see that the local authority is spending thousands of pounds on hiring conference rooms, is this really what public service is about?

Apart from the inadequacy of the provision, Ben’s case raises important questions of law. As the Haslam family barrister, John Friel makes clear,

“Either we have  a voluntary system or we impose it. If you impose it one would normally go through family court proceedings. So, as this is the first situation in which this has arisen … I think this is objectionable, both morally and politically.”

John Friel’s point is that children are usually taken into care either because the parents are failing their child or because they voluntarily opt for local authority care as being in the best interest of their child. In this case the Haslams are clearly not bad parents. And they are not being offered a choice. They are being coerced into placing Ben into care. The Family Court has not decided that Ben would be better off in care. In fact the Family Court has not even been involved. According to Bedfordshire, the SENDIST tribunal upheld the Haslam’s appeal “on a technicality.” So, presumably, the High Court overturned the SENDIST decision on a similar “technicality.”  This whole case has been  decided, not with reference to Ben’s best interests, but with reference to arcane interpretations of the workings of English case law.

I agree with John Friel. This is morally and politically objectionable.

EDIT:

I have just carried out a brief edit to remove some garbled code that came with the cut and paste comments from the BBC website and made it look as if I am a Bedfordshire parent. I am not. But my experience in Cumbria and that of many other parents I have met in the course of my NAS activities suggests that Bedfordshire is not the only authority that tries to shoehorn children into existing resources rather than tailoring resources to meet individual needs.

I am familiar with the argument that council budgets are already under a lot of pressure and they have to make best use of resources. But wasting resources on inadequate provision and pretending it is in the best interests of the child is both a false economy and a falsehood perpetrated on families who struggle with disability and the taxpayers who have to foot the bill.

And, as Kristina has noted in her blog on this subject, parents in the USA face similar conflicts. Sharon has blogged this as well and Madeline provides an interesting link to a story by Sarah Spiller, the reporter in the Ben Haslam story. She is an autism parent herself and had to battle through the courts to get proper provision for her child. And so it goes on.

July 20th, 2008 Posted by Mike | Autism, autism parents, education, government, parents, politics | 3 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

Green Our Vaccines

Green our vaccines? What does that mean? Tomorrow we may find out. Jenny McCarthy and Jim Carrey are leading a march in Washington to demand safer vaccines. According to TACA they want to remove all the toxins from vaccines and change the schedule so that children receive less vaccines and get them later in life. But according to Kev over on Left Brain/Right Brain Jenny went on the record with this gem;

I am surely not going to tell anyone to vaccinate. But if I had another child, there’s no way in hell…….for my next kid—which I’m never going to have—there’s no way.

Now that sounds anti-vaccine to me not pro-vaccine. But I will assume for now that nobody behind the Green Our Vaccines Rally, not TACA, not Generation Rescue, not NAA, not HEAL, not Moms Against Mercury, not Safe Minds, none of these groups are anti-vaccine. All these groups agree with the official line from Jenny and Jim. According to TACA

While Jenny and Jim support the vaccine program, like many, they feel vaccines are too toxic. This country has the ability to provide a safer vaccine supply and schedule to our children.

One part of Green Our Vaccines is to remove the toxins. Now I am assuming that they do not mean the real toxins in vaccines, the weakened forms of diseases that teach our immune systems how to resist the real thing if we should ever come in contact with it. That would not Green our vaccines. It would denature them. No they just want safer vaccines. So what would they remove?

Thiomersal/Thimerosal, the mercury based preservative is gone from nearly all childhood vaccines according to the FDA. And for the flu vaccine that still contain it there are alternatives.

Aluminium/Aluminum is a necessary adjuvant. It makes the vaccine more effective so children need less shots. I thought that was another of the aims of Green Our Vaccines - less shots for children.

Formaldehyde is a natural product. It is sometimes used as an antimicrobial in vaccine production but it is also produced in our bodies as a byproduct of our metabolism. Removing antimicrobials from the production process would definitely Green Our Vaccines in the way I greened a piece of cheese that lay forgotten in my fridge.

Perhaps they mean some of the products that are allegedly found in vaccines like antifreeze. Actually only one ingredient in antifreeze, polyethylene glycol, is used to inactivate one brand of flu vaccine. It is also a common ingredient of many cosmetics and toothpaste and is totally safe.

The other aspect of the call to Green Our Vaccines is to reduce the number of vaccines and give them later in life and at greater intervals. Now, I may be a victim of government propaganda. But, to my mind tiny babies are vulnerable to all sorts of dangers from real diseases and the sooner they get the protection of the recommended vaccine schedule the better.

Perhaps some enterprising journalist will ask some specific questions of Jenny and Jim about how the details of how they propose to Green Our Vaccines. I am sure the answers would be entertaining and instructive.

June 3rd, 2008 Posted by Mike | Autism, politics, vaccines | 50 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

Questions for David Kirby

If I could be in London next week for David Kirby’s PR visit these are some of the questions I would like to ask him. You may care to add your own.

Your book, Evidence of Harm, explores the premise that a 150 per cent increase in the mercury burden in US vaccines (from 75 to 187 microgams of ethyl mercury) that began in 1987 caused the dramatic rise in recorded cases of autistic spectrum disorder in the USA. Given that exposure to ethyl mercury in vaccines in the UK remained at 75 micrograms until it was finally removed in 2004, and we experienced a similar growth in autism, what possible relevance could your book or your theories have for the UK?

Thiomersal was completely removed from US vaccines and stocks exhausted by 2002. Yet autism rates have continued to rise. Do you agree that whatever plausibility there was to the thiomersal hypothesis when you were writing your book, it is contradicted by the data and should now be rejected? Are you now prepared to state publicly that there is no evidence of harm? That vaccines do not cause autism?

In your public debate with the journalist Arthur Allen you conceded that autism rates had not declined in line with your predictions after the removal of thiomersal from vaccines but went on to invoke other environmental sources of mercury such as toxic plumes crossing the Pacific from Chinse coal powered power stations, forest fires in California and even the smoke from crematoria. The UK is not being overwhelmed by pollution either from China or the USA and our autism rates are at least as high as yours. How do you explain this?

The organizations that are sponsoring your visit have been scathing in the past about the conflict of interest of scientific researchers who have repudiated any connection between mercury and autism. Does the fact that you are sponsored by anti-vaccine groups like Safe Minds and Generation Rescue and your current journalistic output is published on the Generation Rescue blog, The Age of Autism, create any conflicts of interest for you that might affect you impartiality as a journalist or are you happy with your role as a publicist for these organizations?

In recent months you have returned to the vaccine bandwagon, this time claiming that a significant number of autism cases are down to a reaction to vaccines that triggers a pre-existing mitochondrial disorder. You base your arguments on confidential documents leaked to you by people connected to Hannah Poling whose case is in the process of being settled at the US Court of Federal Claims. It is very difficult for us to judge the situation based solely on your speculations and the public statements of the Polings. When journalist Ken Reibel asked the Polings at the Autism One conference last month if they were prepared to release Hannah’s medical records and allow her treating physicians to comment publicly his press credentials were revoked and hotel securiy were summoned to expel him from the building. Surely this one sided speculation should cease until the case is settled and the science can be freely discussed by those qualified to do so?

May 31st, 2008 Posted by Mike | Autism, journalism, mercury, vaccines | 14 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

Conflict of Interest - censoring the autism debate?

Conflict of Interest [COI] in scientific and medical research about autism is often misunderstood amongst members of the autism community and beyond. For a start there are many potential conflicts of interest. Most people think of financial COIs. If I am paid by a drug company will my research be biased in their favour? If I have patented a vaccine am I going to defend the entire vaccination programme? If I am being paid as an expert witness am I going to tailor my evidence to satisfy my paymasters?

But what if I am also a parent? Am I motivated by hope of financial security for my child to select research that supports my case in court? Do I have a deeper, psychological need to absolve myself of any guilt for my child’s condition? Bettleheim still casts a long shadow. Am I too emotionally involved to be objective?  And then there are autistic individuals engaged in autism research like Michelle Dawson and Larry Arnold. Where does their COI lie? Do we sometimes use conflict of interest to mean that you conflict with my interest?

And, as Larry argued both in his blog and in the comments on my earlier post on COIs, there are conflicts that arise because we all are individuals with a personal and cultual history and that history helps to shape the assumptions we bring to any subject.

The New McCarthyism? 

Here is an extract from Richard Horton’s book, MMR Science and Fiction in which he cites Ken Rothman:

Rothman not only questioned the importance of conflicts of interest, but also challenged the policy that many scientists and editors were then and now espousing - namely, disclosure as a measure to ameliorate the conflicts that will inevitably exist in all research.

Rothman claimed that the label of ‘conflict of interest’ was little more than a thinly disguised accusation of dishonesty. The idea that there was anyone in science - or in any walk of life, for that matter - who could obtain a position of pefect objectivity was obviously wrong. Everybody, in one way or another, approaches a subject with a prior point of view. By focusing solely on financial conflicts of interest, the self appointed guardians of science, (he means people like myself, the editors of journals) were undermining a long held principle that work should be judged only on its merits. ‘By emphasizing credentials,’ Rothman wrote, ‘these policies [of disclosure] foster an ad hominem aproach to evaluating science.’ [p70]

For some people, if you declare a COI you are automatically tainted and everything you have to say is deemed worthless. But that is silly. Anyone who declares a COI is not saying “I am not to be trusted.” Just the opposite in fact. You are being completely honest. Hiding a COI is more likely to make people question your honesty.

There was a study last year into the relationship between RhIg exposure in pregnant women and autism. According to a report in Medpage Today

The study was supported by a grant from Johnson and Johnson Company and ongoing autism research support from the Leda J. Sears Trust. Neither funding source was involved in the design and conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, or approval of the manuscript. Author conflicts of interest were not listed.

Johnson and Johnson are heavily involved in the manufacture of products that use RhIg. A cynic might argue that even though J & J had no direct influence on this study, the authors could have been tempted by the hope of future funding to come up with a result that pleased their patron.  I would argue the exact opposite. If everybody knows that J & J are funding your study and your results exonerate J & J’s product, you are going to make sure that everything stands up to scrutiny. It is only when you fail to list the connection that people get suspicious. 

That is the whole point. So-called COIs are inevitable in modern science. There would be very little research done without financial backing from industry. And what is the point of paying for lies? People talk about “big pharma” as if it were a single entity. This entity is made up of competing corporations. Even if J & J could buy a piece of research that exonerated their product, how long would it be before a rival corporation found a scientist to expose the flaws?

This brings us back to Rothman’s argument that all science should be judged on its merits and not on the supposed merits of its authors.  Most of us are not equipped to judge. Even within science the degree of specialization is so great that there may be very few scientists who can judge a piece of research on its merits. Professor Simon Baron-Cohen cites the case of Richard Borcherds in his book, The Essential Difference.  Borcherds was awarded the Fields Medal

for his work on a topic so obscure that most mathematicians working in his former Cambridge University department are unable to understand what he is doing. His mathematical brilliance is unquestioned by fellow mathematicians even if they cannot follow the specifics of his ideas. [p155]

Hence the importance of peer review, another much misunderstood concept. Publication after peer review does not automatically confirm the truth or falsehood of a piece of research or a theory. It tells us that a piece of work conforms to acceptable standards of scientific research and is taken seriously by fellow scientists who may go on to confirm or refute its findings in further studies.  

 When Rothman wrote Conflict of Interest, the New McCarthyism in Science? he had no way of knowing that 15 years later the aptly named Jenny McCarthy would be shouting down a respected pediatrician on national television while her supporters attempted to trash his reputation in the blogosphere. This is becoming a hallmark of the autism/vaccine camp’s response when legitimate science challenges their beliefs. They automatically seek to discredit the researcher rather than engage with him or her in a discussion of the research.

Over on LB/RB Joseph has written about a recent manifestation of this worrying trend. Dr Paul Offit has become a hate figure because he speaks up in favour of vaccination and is a patent holder for the Rotateq vaccine that he helped to develop. Anti-vaccine groups assume that everything he says about vaccine safety is a lie because he is defending his own financial interest.

Again this is astounding in its silliness. Even if doctors were only in it for the money you  make money from developing a safe vaccine. You lose money if your vaccine is unsafe. Even a hint of danger will get a vaccine pulled. Rotashield was a vaccine against the Rotavirus. It was very effective but may have led to an increase in the risk of intussusception. The risk was of the order of 1 or 2 cases per 10000. This was quickly picked up and the vaccine was withdrawn. Rotateq was developed by Dr Offit to replace it. It does not carry an increased risk of intussusception and both he and the Children’s Hospital of Philadelphia, where he is head of infectious diseases have benefitted from the royalties on this drug. Where is the harm in that? Anyone who reads Offit’s biography of Mauurice Hilleman, Vaccinated cannot fail to appreciate that both men’s commitment to vaccination is enirely honourable and motivated by a desire to alleviate human suffering.

Expert Witnesses

Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.

So says Safe Minds. There are two sides - parents and drug companies. Fombonne has made his choice and like Offit should be disqualified from further comment because of his “conflict of interest.” This is either an outstanding example of stupidity or it is rank duplicity. I suspect the latter. There is a world of difference between the experts who have a track record in their chosen discipline and are well qualified to offer expert testimony and those who make a career out of offering their services as expert witnesses without necessarily having the necessary level of expertise to be taken seriously. Mark Geier and Boyd Haley are a case in point. Fombonne and other experts like him are employed as expert witnesses because they already have a sound background in the relevant disciplines. They are not playing catch-up on the science in order to beef up their prospects of employment as expert witnesses. 

From McCarthy to McScience

One of the chapters in Horton’s book is entitled The Dawn of McScience. He argues that COIs can have a negative impact. When big money tries to  dictate the scientific agenda the result is often junk science. Horton cites the dispute between researcher Nancy Olivieri and drug company Apotex over the efficacy of deferiprone, a treatment for thalassaemia. Horton’s sympathies are clearly with the researcher. A more even handed view is presented by Julian Savulescu, Uehiro chair in practical ethics at Oxford University. Both seem to agree on the need for ethical oversight of the outcome of research, alongside the traditional ethical oversight of research proposals. The latter is designed to protect research subjects. The former would give a role to ethics committees in resolving disputes over the results of research, especially when those disputes pertain to patient welfare.

This could be made to work. It might overcome cynicism about big science and big money. It might even help to stem the tide of really junk science that is used to justify so much of the so-called complementary and alternative therapies out there.

In the meantime, if we are to call a halt to the McCarthyite use of COIs to bully and harrass scientific critics of the vaccine-autism connection, it seems only fair to me to hold its advocates to the exact same standards of honesty about potential COIs that they claim to uphold.

May 25th, 2008 Posted by Mike | Autism, ethics, science | 9 comments

Alex is “Cool”

Thanks to Bev for alerting me to this story about the emotional abuse of a 5 year old by his kindergarten teacher, Wendy Portillo. Portillo thought it would be a good idea to stand young Alex Barton, who has Asperger’s Syndrome, in front of the class and invite other pupils to say what they did not like about him. Then she conducted a vote on whether he should remain in the class. The pupils voted 14 to 2 to exclude him. He spent the rest of the day in the nurse’s office and has not returned to the school. He screams whenever he accompanies his mother to drop off his sibling at the school. The police have investigated and the district attorney has decided not to prosecute. The school district is still investigating the matter.

Bullying of children with disabilities is commonplace. But I was shocked to read that a teacher was leading the bullying when I read Amanda’s blog about Alex, which suggested that bullying by adults or the sanctioning of bullying by adults who should be defending vulnerable children is a regular occurrence. Amanda also provides a valuable perspective on a culture that not only rewards the “winners” but also sets out to deliberately punish the “losers” as well.

Statements by public figures suggest that we aspire to an inclusive society that embraces diversity. The reality is somewhat different. Amanda asks a very pertinent question.

I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.

I think we owe it to Alex to let the school authorities in Port St Lucie know that this teacher’s behaviour is beyond the pale. There is another way. I am emailing this story, originally posted by Fargo on alt.support.autism to the school principal, Maria Cully  with copies to Wendy Portillo and the St Lucie County School Board.

SOMETHING SPECIAL ABOUT BENJI

Once upon a time there was a Benji.  He looked like a little boy.  He had
brown hair and big brown eyes and a very sweet smile.  But Benji wasn’t like
other little boys. Sometimes Benji was very quiet and the other children at school  didn’t
think that Benji knew how to play.Sometimes Benji was very noisy and the other children didn’t think that
Benji knew how to be serious.

And sometimes…sometimes Benji was very angry.

There was something very different about Benji.

But all the time, inside, Benji wanted to be  like the other children.

He  liked to watch them run on the playground.  Sometimes they told him not
to stare.

He liked to watch them go down the slide but he didn’t like to go down the
slide himself and they thought he was a sissy.

He liked to play characters in movies and sometimes the kids said he was a
crazy guy.

Yes, there was something very different about Benji.

Then one day, the teacher told the classroom what it was that was different.

Benji was Autistic.

Benji could hear and could see and could feel things.  But sometimes he
didn’t know what was said.  Sometimes he didn’t know what to do.  Sometimes
there were things he didn’t like to touch or to taste.

The teacher explained that while Benji was just like all the other kids on
the inside, sometimes things he heard or saw or touched or tasted got
confused before they reached his brain.

And this could make him very angry because, Benji was waiting and wanting to
be friends.

She told the children that each of them was different from the rest of the
class, just like Benji.

Mary was the tallest girl and Angie was the shortest.

Billy had the most freckles, and Charlie had the longest hair.

She told the class that being different wasn’t a bad thing because being
tall or short or having freckles or having long hair wasn’t a bad thing.
Sometimes it was very special.

She continued to go around the classroom telling each child something
special about them.

Toby  told the funniest jokes and Max was the best speller.

Tammy  could run the fastest and Richard drew the best airplanes.

Each child was different yet each child was special.

The teacher  asked the children to try to help Benji learn how to do the
things the other kids knew how to do.  And she asked for them to each find
out the answer to this question.

How is Benji special?

The kids decided to try to help Benji.

When Benji was quiet they would talk to him by saying “It is a nice day”
instead of asking him what kind of day it was.

When he was loud they would say, “Benji, we have to be quiet now.  We will
be loud at recess.”

When he watched them run on the playground they would go over to Benji and
say, “Benji, will you run with me?”

And when he was afraid to go down the slide, they did not call him sissy.
They told him things they were afraid to do.

They played like they were characters in movies, too, and Benji joined in on
their games.

But most of all, they stopped calling Benji a crazy guy.  Because once they
got to know him…they  found out what was special about Benji.

Benji was  “Cool.”

Alex is cool as well. I hope someone can tell him that.

May 24th, 2008 Posted by Mike | Autism, abuse, bullying, education | 18 comments

Judge Rotenberg Center - action at last?

This comment was  posted to an old blog post of mine about the Judge Rotenberg Center.

I have a 25 year old son with severe autism, he is non verbal and is self abusive, self injury, aggressive, he’s 6′1″ too. I’d rather DIE than ever put my son into the JRC!! you need behavior modifaction! no punishments! now my son is doing much better I forgot to tell you those really bad behaviors had happened more when he was 15 yrs old, altho they still come up. I love my son with all my heart and I hate the fact he’s in a group home now. I live in R.I. I wish I could take him home forever. Thanks for reading.

If you read this press report you will understand the strength of her feeling. A prank phone call fooled the staff into administering a series of electric shocks to two unfortunate inmates for alleged misdemeanours committed earlier in the evening. This week the Boston Globe published a follow-up story. 

Rotenberg records reportedly are seized

By Patricia Wen
Globe Staff
May 15, 2008

State Police seized documents late last week from the offices of the Judge Rotenberg Educational Center in Canton that are related to a prank phone call last summer that led two students to wrongfully receive dozens of punishing electrical shocks, according to two people with direct knowledge of the investigation

My immediate response is “Wrongfully?” So under what circumstances should students “rightfully” receive electric shocks? My second thought is that, even if one were to accept the premise that contingent electric shock is an effective and acceptable method of behaviour modification, what sort of staff would sanction this to take place hours after the alleged infractions, and on the basis of a phone call? The original report in the Boston Globe tells us.

Six staff members worked the overnight shift at the group home at 66 Kevin Clancy Way, a tan house located in a quiet cul-de-sac in Stoughton. Five of the six had already worked a double or triple shift, while the sixth worker showed up at 10 p.m. None had much experience caring for emotionally disturbed boys at the group home. Most had been on the job less than three months.

Inexperienced, overworked staff, that’s who. But why should they comply with such a bizarre request? Again the original Boston Globe report is invaluable.

The staff was “apprehensive” and confused about the caller and discussed what to do, but they went ahead with the punishments because they were told by the caller that they would be “evaluated” if they did not obey, the report said. The caller, who made a series of calls between 2 and 4:45 a.m., had detailed knowledge of the inside of the house and led the staff to believe that he was watching them on surveillance screens at the central office.

Inexperienced, overworked staff who were only following orders and were fearful of the consequences if they did not obey.  Hmm. This is abusive and bullying on so many levels. The latest report updates us on a grand jury investigation

led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

Ah yes, follow the money. JRC has around 250 inmates at $250,000 a year. They are plainly not spending it on quality staff. So where does the money go?

Ernest Corrigan, a spokesman for the school, did not confirm that a seizure of documents had occurred last week. He said only that school officials have been cooperative with state and local police ever since they reported the prank phone call to police last summer.

“We’ve been supportive of the investigation,” he said.

As a mark of their “cooperation” they destroyed the surveillance tapes of last years abuse even after being told by investigating officials to preserve them. For too long the JRC has got away with the abuse of autistic and other vulnerable young people. It remains to be seen if they will get away with abuse of the legal process.

May 17th, 2008 Posted by Mike | Autism, Judge Rotenberg Center, ethics | one comment