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

Autism Hub and Neurodiversity

Many thanks to Steve and Bev for an excellent performance on behalf of the Autism Hub when they appeared on These Days, a talk show with an audience of tens of thousands in the San Diego area. You can download the interview here. They were being interviewed because both are speaking at the University of San Diego’s Summer Autism Institute entitled Autism; Work With Me, Not On Me. 

They are not alone: Fellow Autism Hub bloggers, Estee Klar-Wolfond, Do’C and Autism Diva who now blogs more often over on LeftBrain/RightBrain are all joining them to give a joint presentation

“Blogging and Autism: The role of the internet in today’s autism community.”

And Estee has her own slot as well:

The Mismeasure of Autism: The basis of current autism “advocacy”

I wish I could have been there. But i am looking forward to reading all about it on their blogs when they return.

Steve asked us to showcase our favourite blogs in case newcomers turn up to see what all the fuss is about. I am reposting an article wrote on Neurodiversity because it sums up a lot of my feelings about autism.

What is Neurodiversity?

What is Neurodiversity? By Mike Stanton

When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.

I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”

The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.

This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.

What does Neurodiversity mean for parents?

The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.

Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.

Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage - a method of teaching everything in tiny steps.
[…]
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
[…]
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism - honesty, uncompetitiveness, absence of spite.

Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,

Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”

Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,

an autistic child can only be helped if a serious attempt is made to see the world from his point of view.

Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.

I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.

This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. 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. You try and offer constructive criticism. They take it as a mortal insult.

If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.

When does Neurodiversity give way to disability?

It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.

There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.

Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.

Who will speak for my child?

This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.

The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members - parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.

I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.

Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.

What does Neurodiversity mean for professionals?

By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.

The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.
What does Neurodiversity mean for autistic people?

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.

My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.

Links

One mother’s story

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2006/05/08/hastor08.xml&sSheet=/health/2006/05/08/ixhmain.html

Autism Society of America

http://www.autism-society.org/site/News2?page=NewsArticle&id=8273&news_iv_ctrl=0

Autism Hub

http://www.autism-hub.co.uk/

June 25th, 2008 Posted by Mike | Autism rights, Neurodiversity, autism acceptance | 30 comments

Terrible deeds in Zimbabwe

Whether you are a parent seeking a cure or an advocate for neurodiversity who worries about calls to eradicate autism it is easy to get locked into a mind set in which nothing else seems to matter. What could be more important than your child’s health or your right to exist? These are important. But there is a whole world of issues that are equally important.

Right now, the enormity of events in Zimbabwe makes everything else seem minor by comparison. This is copied verbatim from the blog of Anthony Cox, Black Triangle. He got it from Norman Geras’ Normblog,  It was compiled by the Zimbabwe Association of Doctors for Human Rights.

Cases of Systematic Violent Assault and Torture Overwhelm Health Professionals

17 June 2008

ZADHR is deeply concerned about the continuing violent trauma being inflicted on the Zimbabwean population. The escalation in numbers and severity of cases of systematic violent assault and torture during May was of a scale which threatened to, and for brief periods did, overwhelm the capacity of health workers to respond. Both first line casualty officers and specialists, especially surgeons and anaesthetists, to whom patients were referred had great difficulty in adequately managing the burden of serious physical trauma.

ZADHR commends the efforts of health professionals in Zimbabwe who continue to provide the highest possible quality of health care to victims of violence under extremely difficult circumstances.

In addition to individuals with significant physical injuries, members of ZADHR saw over 300 displaced patients with medical conditions such as pneumonia or asthma, or psychiatric diagnoses, in particular anxiety and depression, and many with chronic conditions such as diabetes whose medication had been lost or destroyed when the patients were violently forced, by arson or the immediate probability of injury or death, from their homes.

It is certain that a far greater number of patients will have been attended to by other members of the health professions, especially nurses, but will never have been near a doctor. Psychiatric and social problems may result in an even greater burden on health care workers than the frequently complicated but relatively clearcut diagnoses such as fractures.

One thousand and seven patients were seen during the month of May. 119 patients sustained fractures, more than 50 of which were recorded as confirmed on x ray. The remainder were clinical diagnoses, either with clinically evident physical distortion or with the broken ends of bone protruding through an external wound (compound fracture). 36 patients had fractures of the ulna (the inner or medial bone of the forearm), 27 of the radius (the outer or lateral bone of the forearm). Of these 13 had fractures of both radius and ulna, 4 had fractures of the ulna bones of both arms, and one patient had both radius bones broken. Seventeen further cases of fractured wrist, forearm or elbow were recorded.

Most of these fractures will have been sustained in attempts to defend the face and upper body from violent blows with a weapon such as a heavy stick or iron bar. As evidence for the sustained severity of the violence of many of the assaults there were several cases of multiple fractures to different areas of the body, for example one patient with fractures of the left ulna, right radius and a metatarsal (small bone of the foot), and another with a patella (knee cap) and bilateral ulna fractures. Three patients had skull fractures and 9 had broken ribs. Two of these cases had multiple rib fractures associated with haemothorax (bleeding into the space between the lungs and the chest wall, probably caused by penetration of the broken end of a rib, which can be rapidly fatal).

Forty five cases of fractures of the small bones of the hands (31) or feet (12), both hands (1), or both hands and feet (1) were recorded. Many patients sustained fractures to several bones, again witness to the sustained brutality of the assaults, and consistent with reports of hands and feet being pounded by a pestle (mutswi) in a mortar (duri).

At least two pregnant women, one 24 and the other 32 weeks gestation, were systematically beaten on the back and buttocks, resulting in extensive lacerations, bruising and haematoma formation. They were among the 312 cases classified as having severe soft tissue injury. This category includes widespread severe bruising, haematoma (collection of blood) formation, necrosis (tissue death), sepsis (infection, usually where there is extensive skin loss or abscess formation in a haematoma), or deep and extensive lacerations (cuts or wounds).

One patient, beaten extensively on the shoulders, back, buttocks and thighs, was also struck in the face and suffered a leak of vitreous humour (the transparent gel-like substance behind the lens of the eye) resulting in blindness.

There have been reports of over 53 violent deaths up to the end of May 2008. However although post-mortem examinations are legally mandatory in such cases, few are being undertaken and therefore cases are only rarely confirmed by doctors. However 7 of these deaths occurred in hospital following admission for injuries sustained during violent assault or torture and a further three did have post-mortem examinations. One confirmed a broken neck as the cause of death. A second died as a result of intracranial haemorrhage (bleeding inside the head) with extensive facial injury indicative of having been beaten on the head. The second died as a result of probable acute renal failure secondary to extensive myolysis (destruction of muscle) and soft tissue necrosis with evidence of falanga and widespread whipping type injuries. In the third case, the body was found several days after abduction, and although it was partially decomposed, the detailed post-mortem which was carried out did not reveal evidence of beating or torture. The estimated time of death (nearer to the time of abduction rather than when the body was found) and the witnessed method of abduction in which the head was forcibly extended, the face covered and, with the victim prone, several attackers putting their weight on his back, are consistent with death due to asphyxia.

There has been a gross surge in both the quantity and severity of injury. Fracture cases alone increased three-fold in number from April to May. These documented cases speak for themselves in terms of the urgency of the need to stop the violence which is sweeping large areas of the country. ZADHR reiterates its call on all parties to cease the use of assault and torture intimidation, victimisation or retribution. In addition to cessation of violence there are other urgent needs for affected individuals including shelter, food and water for internally displaced persons and mental and physical rehabilitation for victims of violent trauma.

June 23rd, 2008 Posted by Mike | politics | 5 comments

Another Measles Death

People sometimes ask why this blog is all about vaccines when it is supposed to be about autism. Of course it is not all about vaccines. But it must seem like that because a lot of the time I am responding to the argument that vaccines are a cause of autism. Why do I bother when there is no scientific basis for any of the supposed pathways?

MMR was only ever supported by the work of one team of researchers grouped around Wakefield and working for the lawyers pursuing claims for compensation against the vaccine manufacturers. The testimony of Bustin and Chadwick at the Omnibus Autism Proceedings demonstrated the flawed nature of much of that research. Other scientists have failed to replicate Wakefield’s findings and epidemiological studies have shown no connection between autism and MMR.

Thiomersal, a mercury based preservative that used to be found in minute quantities in some childhood vaccines, has also been blamed. A speculative paper suggested similarities between the symptoms of mercury poisoning and autism. This idea was thoroughly debunked but the idea persisted because the growth in reported prevalence of autism in the USA coincided with an increase in the number of vaccines containing thiomersal. Advocates for this theory never adequately explained why autism numbers in the UK were growing at least as fast as those in the USA while the number of thiomersal containing vaccines [TCVs] in the UK never increased. And when TCVS were eliminated from the recommended childhood vaccine schedule in the USA in 2002 the numbers continued to rise.

The latest “theory” that we give our children “too many too soon” and overwhelm their natural defenses ignores the simple fact that advances in vaccine development mean that the entire vaccine schedule contains less active ingredients than ever before.  A single dose of smallpox vaccine with 200 antigens contained more antigens on its own than all today’s vaccines put together. And in 1960 smallpox plus polio plus diptheria, tetanus and pertussis vaccines delivered 3,200 antigens!

“Too much too soon” is part of the “Green Our Vaccines” campaign. It is coupled with a spurious argument about toxins in vaccines. The Green Our Vaccines list of alleged toxic ingredients has been thoroughly dismissed. There are some potentially toxic chemicals used in vaccine production. These have all been tested for safety and are necessary to prevent contamination during production, storage and delivery of vaccines. I wonder how many of us use equally potent ”toxins” to cleanse work surfaces on which we prepare food for our children.

Their “science” is non-existent. But the anti-vaccine element have proved impossible to ignore because the media continue to give them publicity. And this publicity has contributed to the decline in vaccine uptake, paticularly the MMR. For example last month the Daily Telegraph published a ridiculous story entitled “MMR; the debate that will not go away.” Yesterday the Telegraph, with no apparent sense of shame, carried another story, “Teenager dies of Measles as cases continue to rise, Government officials say.”

This young man did have problems with his immune ystem which made it difficult for him to have vaccinations. Instead he relied on the “herd immunity” conferred on society when sufficient people are vaccinated to prevent a disease taking hold. 95% is usually held out as the threshold figure. But thanks to previous scare stories in papers like the Telegraph coverage is much lower. 84% of two year old have had the MMR. But only 75% of 5 year olds have had their second shot. In London the situation is worse with figures of 71% and 50% respectively according to the Independent. Measles is once again becoming endemic in the UK with 461 cases so far this year.

Most cases are thankfully not fatal. But they can still cause terrible illness. A woman in Blackpool nearly lost her daughter to the complications of measles.

Leah, who picked up the disease from her brother, was rushed into Blackpool Victoria Hospital on June 4 and kept on a drip for four harrowing days.

Mrs Hartley explained: “She had an horrendous sounding cough, a sky-high temperature, an upset stomach, conjunctivitis and she couldn’t stay awake.

“At one point she woke up and was hallucinating so she started screaming and crying, it really was terrifying.

“My mind was racing and I didn’t think she was going to pull through it – I never would have believed measles could make anyone so ill.”

Out of curiosity I visited the JABS forum. JABS claims to be neither pro nor anti vaccine. But it comes across as anti-vaccine and a supporter of the mmr-autism connection. Both the Telegraph report on the death from measles and the Independent report on the rise of measles were posted there on Saturday afternoon. Thus far at 1.00am on Sunday morning the young man’s death has been read 29 times with no comments. But the Independent report on the endemic has attracted 88 readers and comments like these.

Natural measles exposure is the best immunity you can get so I would imagine many parents will welcome this news with open arms.

One case of measles [in which a young man dies] makes the front page thousands of cases of autism unmentioned…agenda or what???

MMR RIP

if they can now justify mentioning individual measles cases, [He means a measles death]when normally they dismiss them in favour of epidemiology, then this must give the green light to discussing adverse reaction individual cases??

I will continue to post stories about vaccines in order to remind myself of what happens when quackery combines with conspiracy theory to drive out reason and compassion. Let us hope that the need to post such stories will diminish as the link between vaccines and autism is finally severed.

June 22nd, 2008 Posted by Mike | Andrew Wakefield, MMR, journalism, mercury, vaccines | 9 comments

A real conflict of interest.

Just as the supposed connection between thiomersal and autism has been replaced by Green Our Vaccines sloganizing about all the toxins in vaccines, so the specific reference to autism has been diluted with reference to other neurologiciacal and psychological disorders.  I often read that one in six US children has some sort of mental health or neurological problem and it is often blamed on toxins in vaccines and in the wider environment. The largest single group are those who are supposed to have ADHD, with 2.4 million  children in the USA  on medication it accounts for 5 per cent. Depression accounts for another 5 per cent; Obsessive Compulsive Disorder between 1 and 3 per cent; Autistic Spectrum 1 per cent. A more recent addition is Bipolar disorder which moved up the scale from 20,000 diagnoses in 1994 to 800,000 or 1 per cent of US Americans under 20 by 2003.

I am sure that there is a lot of double counting here. Nearly half of all children with bipolar have another diagnosis, usually ADHD. Lots of kids with autism have depression or OCD. Children with Tourettes often have ADHD or OCD.  Nevertheless there are a lot of children being diagnosed wth various neurological and psychiatric disorders and for many the treatment of choice is some form of medication.

But for Mark Geier, David Kirby and Brad Handley the broader picture is clear. Never mind the 1 in 150 with autism. They are just the tip of an iceberg. We are looking at 50 million potentially brain damaged US Americans. Something has to be done.

I think that we in the neurodiversity movement have been rightly skeptical of these figures. We understand how the prevalence for autism has been driven up by broadening the criteria, developing better screening and diagnostic tools, increasing awareness and even improving provision. “Build it and they will come come.”

Although there are problems with the abuse of medications with autistic people the big problem for many in the medical profession and for parents has been that there is no autism pill. The search for a pharmacological solution has seduced some autism researchers and led to some famous dead-ends. Frustrated parents have turned instead to alternative practitioners offering the biomedical solutions that I have criticized from the inception of this blog.

Broadly speaking autism numbers have grown in line with our understanding of autism. We have moved from a narrowly defined disorder to a spectrum. We have struggled within that spectrum to strike a balance between the concept of discrete categories of disorder and the dimensional approach which suggests that some of the differences exhibited by autistic people may be welcome additions to the diversity of human wiring. Nevertheless, developments within autism research and the debates they generate tend to take us forward.

But I detect a different process at work with those other categories and dimensions of disorder and well-being. There may not be an autism pill but there is a pill for ADHD, for OCD, for depression etc. Sometimes there are competing pills and off label pills seeking a new niche and a sales opportunity. What if the same pharmaceutical interests that the biomedical autism community revile for there role in obfuscating the question of an autism epidemic in the face of an obvious crisis for the mental health of our children [1 in 6 ferchrissakes!]  actually generated that broader crisis in order to boost drug sales?

Now, let me say that I fully support the idea of children as autonomous learners, active agents in their own development. We now recognize the inner life of the child and recognize that when things go wrong and children experience crises in their emotional and psychological development they are entitled to help and understanding. But  1 in 10 ten year old US American boys on medication for ADHD? Something is clearly wrong.

A recent report in the New York Times exposes a real conflict of interest and shows how easily scientists, convinced of their own correctness can seriously compromise, not only their own credibility, but that of colleagues working ethically in the same field.

It may just be a coincidence, but those leading the drive to diagnose and treat bipolar disorder in children are also the recipients of large and undisclosed stipends from the pharmaceutical companies that prescribe the drugs used to treat those children. The key word here is undisclosed.

Doctor Joseph Biederman,

A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators.

By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants.

Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley’s investigators. But even these amended disclosures may understate the researchers’ outside income because some entries contradict payment information from drug makers, Mr. Grassley found.

It is important to remember that the failure to disclose these payments does not automatically negate the work these men have done in the field of bipolar disorder in childhood. But if their financial relationship to the pharmaceutical companies had been known in advance I am sure that their work would have been subject to much more rigorous scrutiny. I hope that it is subject to such scrutiny now and not summarily dismissed.

We in the autism community have seen what arrogance can do when a talented individual like Wakefield becomes so convinced of the correctness of his own position that he disregards the normal  conventions of science in the hope that history will vindicate him. But personal conviction can lead to self delusion without the necessary corrective of an honest accounting to your peers. And when we are talking about six figure sums from “Big Pharma” honest accounting takes on a whole new meaning.

June 8th, 2008 Posted by Mike | ethics, mental health, psychiatry, science | 4 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

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