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
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
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
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
A QUESTION
Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.
Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?
thanks………I wouldn’t know where to start looking.
The Integral
SOME ANSWERS
Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.
KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?
TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.
KING: You call it disease?
TAYLOE: Yes.
Doctor Grinker in Unstrange Minds wrote:
“In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]
Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development.
In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.
This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)
Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.
Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?
The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology? The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.
I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:
It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.
DISCUSSION
My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept.
But that just mirrors our opponent, who has their own agenda and their own equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.
Some examples:
-
“What do you mean by disease?”
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“What do you mean when you characterize autism as a disease?”
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“By your definition is Down’s Syndrome a disease?”
In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.
Some more examples:
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If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?
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If autism is a disease of course we ought to try and cure it.
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Investigating the causes of autism is the same as wanting to get rid of all autistics.
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Saying I have a disease is like saying I am a disease.
Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.
The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy!
A CONCLUSION
I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?
I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease. All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.
A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,
“I’m sorry, Dad. I wish I could have been the boy you never had.”
Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.
April 27th, 2008
Posted by
Mike |
Autism, Neurodiversity, autism acceptance, politics, science |
32 comments
“The Wakefield Witchhunt” - Melanie Phillips - The Spectator - Friday, 21st March 2008
A couple of days ago, yet another story appeared claiming that fresh research had shown that there was no link between the MMR vaccination and autism. This new research was said to have shown that, contrary to the claims made by Dr Andrew Wakefield, the surgeon at the centre of the MMR scare, there was no relationship between gut problems and autism, the core of his concerns. It also claimed that the discovery furthermore damaged the related theory that a gluten-free diet could help children with autism.
This must be a first, even when judged by the standards of accuracy previously set by newspaper columnist, Melanie Phillips. Every statement of fact in her opening paragraph is wrong! The ”fresh research” makes no mention of MMR apart from acknowledging a potential conflict of interest because one of the authors, John March “has previously acted as an expert witness for the litigants in the MMR litigation case conducted by Alexander Harris against three MMR vaccine manufacturers, which involved urinary analysis of both litigants and non-litigant controls using MALDI-TOF mass spectrometry. He has an autistic child who was not part of this legal case.”
The next sentence is very telling, “was said to have shown that…” Was said by whom? Has Ms Phillips actually read the research in question or is she relying on her feed from LexisNexis? If she had read the research paper she would know that it makes no claims regarding the purported link between gut issues and autism. Neither does it question the efficacy of the gluten and casein free diet. The authors are careful not to dismiss the diet. Instead they call for more research into it. NHS Choices gets it right.
Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the ’leaky gut theory‘. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.
Ms Phillips is on firmer ground when quoting directly from the press release
“Dr Hilary Cass, from Great Ormond Street, said: ‘It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten-free diet which as yet lacks an evidence base.’
But then she puts her foot in it by adding her own commentary
This particular observation is a telling indication that this study bears little relation to reality. For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.
All together now, for the benefit of Ms Phillips: The plural of anecdote is not data! Testimonials from parents need to be backed up by solid data from properly conducted research. We are awaiting the outcome of a couple of studies that may provide that evidence base.
Second, despite the way this was presented in the media this is not a new piece of research at all. It is instead a recycled version of a study by Baird G. et al, published in the Archive of Diseases in Childhood on February 5 and reported in the press around that time.
Oh dear! Where on earth did she get that idea? Baird G. et al did take advantage of an earlier study [Baird G, Simonoff E, Pickles A, et al. "Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)" Lancet 2006; 368:210–15.] for their study of “Measles vaccination and antibody response in autism spectrum disorders.” But this has nothing to do with Dr Cass.
Dr Cass recruited children “from two tertiary referral centres specialising in autistic spectrum disorders whilst controls were recruited from and mainstream primary and secondary schools in the same geographical area. 65 boys with autism mean age 7:4 years (5-11) and 158 control boys mean age 7:8 years (4:2-11)”
Dr Baird used “A community sample of vaccinated children aged 10–12 years in the UK with ASD (n=98) and two control groups of similar age, one with special educational needs but no ASD (n=52) and one typically developing group (n=90), were tested for measles virus and antibody response to measles in the serum.”
So Dr Cass “recycled” this study using different researchers, different children, different research aims and methods, and different funding bodies. The two studies are totally unrelated. Nevertheless Ms Phillips goes on to cite Wakefield’s response to Baird et al and a letter by John Stone in response to Baird et al as if they apply to Cass et al! Not that this mattters to Ms Phillips. Nowhere does she discuss the content of either Baird’s or Cass’s research or evaluate the hefty quotations from Wakefield and Stone. (They total 1100 words in an article of 2000 words. I wonder if she is paid per column inch.) No. This is just another way to reiterate the myth of the martyrdom of Andrew Wakefield at the GMC.
No stone is being left unturned by the medico-political establishment and its creatures in the media to ensure that this doctor is destroyed.
Ms Phillips, like David Kirby, has pretensions of impartiality.
As I have repeatedly said, I have no idea whether Wakefield is correct or not in his concerns about the possible adverse effects of the MMR vaccine on a small sub-set of vaccinated children. Nor do I know whether any of the charges being levelled against him at the GMC has any legs. But I do believe — as I wrote in my series of articles on the subject for the Daily Mail in 2003 here, here and here — that many of the statements made by the Department of Health and medical establishment about the ‘proof’ of the vaccine’s unchallengeable safety are deeply misleading.
Wow! She has no idea about MMR and autism. She has no opinion on Wakefield’s culpability. But she does have an opinion on the stated opinions of the Department of Health and the medical establishment on these very matters. Furthermore, her opinion of the opinions of others on matters on which she has no opinion is the same opinion she had 5 years ago and we can read it “here, here and here.” Meanwhile, back to the present and a few more gems from Ms Phillips.
No-one has ever suggested that the MMR vaccine causes all or most of the incidence of autism. If Wakefield is correct, it is only a small proportion of children whose immune systems may be unable to cope, for whatever reason, which makes them particularly vulnerable to such ill-effects.
No-one? How about the presenter of “Origins of the Autism Epidemic,” Andrew Wakefield. And how small is a small proportion? Researchers like Cass and Baird provide us with data. According to Wakefield:
“We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children.”
“Several thousand children?” We know he had examined 12 children by 1998 There were around 1300 children in the UK class action against MMR that failed. Perhaps he examined them all. Then Wakefield went to work for Jeff Bradstreet, an exorcist in Florida before setting up Thoughtful House in 2005 where Arthur Krigsman scopes every child that walks through the door. If we average it out and say 2 children a day every day, not counting weekends and holidays for 10 years that gives us around 5000 kids with and endoscopic investigation and 4000 turned up positive for enterocolitis and autism. Yeah, whatever. Perhaps Wakefield will publish his data one day and end all the guesswork.
And contrary to the message being pumped out by the medical establishment that the vaccine has been proved to be safe — by studies which are all either flawed, inadequate or irrelevant — the fairest and most accurate thing to say is that the jury is still out.
Vaccines will never be “proved safe” if by this you mean that they will be absolved of all risk. But they are safer than the diseases they protect against. How about it Ms Phillips? Would you like polio or the polio vaccine?
One of the most reprehensible weapons being wielded in the witch-hunt against Wakefield is the claim that anyone who gives any credence whatever to his concerns is responsible for the incidence of measles amongst children whose parents are as a result too frightened to give them the MMR vaccination. There are two obvious points to make in response to this piece of moral blackmail: 1) the whole panic could have been avoided by offering single measles, mumps and rubella jabs rather than the triple MMR, and 2) it is surely just as important as avoiding cases of measles mumps and rubella to avoid causing the kind of catastrophic damage to the brain and gut displayed by the children at the heart of this controversy.
Wrong again! Offering single vaccines is tantamount to admitting that MMR is dangerous. It would have destroyed public confidence in the whole vaccine schedule and take up of the three shots would have been significantly less than the triple shot, always assuming we could source three separate vaccines that had been adequately tested for safety. And regarding point 2), hang on! How do you know that single vaccines would avoid this “kind of catastrophic damage” unless you already had an opinion about the effects of the MMR? Remember? The opinion that Ms Phillips claims not to have?
And there is a further and quite appalling point to note. This whole saga started because parents of such children found that their family doctors were dismissing out of hand their children’s gut and brain problems, accordingly refusing to alleviate their suffering. Now, as a direct result of the animosity towards Wakefield that has been whipped up — and the fear that any doctor who suggests he might be right will similarly find him or herself at the receiving end of the medical establishment’s fist — children exhibiting this combination of gut and brain damage are finding it difficult to obtain treatment.
Yes! Because quacks like Wakefield and their silly media acolytes have made it next to impossible for a doctor to diagnose and treat GI disorders in autistic children without being tarred with the same brush! Thank you Dr. Wakefield. Thank you Ms Phillips.
As the resumption of the GMC hearing draws nearer, one has to ask whether this will serve the cause of truth and justice and the relief of suffering — or is it instead merely a show trial which will bring about the precise opposite?
I hope that Wakefield is severely chastised and that we can move on to addressing the real needs of autistic children and adults free from the need to constantly address spurious scare stories about vaccines.
Melanie Phillips writes for the Spectator. It’s editor used to be Boris Johnson, who masked his intellectual prowess with the appearance of dimwitted buffoonery. Ms Phillips is just the opposite.
March 23rd, 2008
Posted by
Mike |
Andrew Wakefield, Autism, MMR, journalism, parents, politics, vaccines |
13 comments
NEW BLOGS FOR OLD
There is a new blog on the block. Autism News Beat opened with this.
“I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story.”
The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding ABA. This is akin to backing Stephen Dawkins in an argument against intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]
RDI
Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to “cure” his autism. He was loved and accepted by a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.
Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem’s mother, Sabelle Jelani and to her proposed school.
PC VERSUS FC?
Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.
DISABILITY RIGHTS KNOWS NO BOUNDARIES.
Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:
‘Not to worry, there are plenty of places for children like him.’ And she said, ‘In any case, they don’t live long.’”
Attitudes have changed, as the article makes clear.
“Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down’s syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life.”
Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.
DISABLED SEX LIVES!
I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships? If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.
October 8th, 2007
Posted by
Mike |
Autism, autism parents, politics, science |
17 comments
If I were part of a group of parents of autistic children organizing an international conference costing in the region of 200,000 US dollars, I would want the best speakers in the world. My top ten, out of all the speakers I have listened to at autism conferences, in alphabetical order are Tony Attwood, Simon Baron-Cohen, Gunilla Gerland, Chris Gillberg, Judy Gould, Temple Grandin, Wendy Lawson, Gary Mesibov, Clare Sainsbury, Lorna Wing. I can think of dozens of others who, in my opinion, would grace any international conference on autism, including old friends like Larry Arnold, Luke Beardon, Leneh Molton, Dennis Debbaudt and those I only know via the internet like Michelle Dawson, Roy Grinker, Mike Fitzpatrick, Dinah Murray and Estee Klar Wolfond. Then there are all the others whom I have never heard speak, never met and never swapped emails with, like Eric Fombonne and Donna Williams.
So who have the Autism Parent Network lined up for the Asian Autism Conference in Hong Kong this September? Here is the official list with their authorized biographies. There is not one internationally acclaimed authority on autism. And they have also studiously ignored the local talent. The authors of this paper and this paper who all found no connection between mercury and autism have not been invited to speak. But there are plenty of snake oil salesmen, faith healers, exorcists and nutty professors who still cling to the mercury hypothesis.
Dr Ken Bock
Dr Ken Bock received his medical degree with honors from the University of Rochester. He is an experienced DAN clinician, whose expertise lies in bringing a comprehensive integrative medicine approach to complex medical problems. Utilizing this patient-centered approach he has helped thousands of children on the road to recovery. In this lecture he will explain why the gut and diet are the first step on this road to recovery.
Dr Jeff Bradstreet
Dr. Bradstreet is the founder of the International Child Development Resource Center in Florida. He is an Adjunct Professor of Neurosciences at Stetson University, Florida and the Southwest College of Naturopathic Medicine, Phoenix, Arizona. Dr. Bradstreet serves as an active collaborator on research projects at numerous medical schools. His interests in autism include metal detoxification, hyperbarics and immunological management of gastrointestinal problems. Dr Bradstreet will review the favorable clinical observations and research outcomes regarding the use of Hyperbaric Oxygen in autism spectrum disorders and outline common protocols.
Dr Stephanie Cave
The years between 1991 and 2002 will probably go down in history as the most controversial for the vaccine program. Many children were given vaccines containing toxic amounts of ethyl mercury and aluminum, as well as live viral contaminants. Dr. Cave will discuss the impact that this has had on the pediatric population, and will give some information about the numerous new vaccines that are being recommended. She will explain how important it is to get vaccinated, but safely.
Dr Doreen Granpeesheh
Dr. Granpeesheh founded The Center for Autism and Related Disorders and through its 17 offices worldwide, she has provided diagnosis, assessment and behavioral treatment for over 5,000 children with autism and related disorders.
Dr Martha Herbert
Dr Martha Herbert is a Pediatric Neurologist at Massachusetts General Hospital (Harvard Medical School) and is on the faculty of Harvard Medical School. She specializes in children with learning and developmental disorders. In this lecture she discusses the growing body of research demonstrating biomedical problems like inflammation and oxidative stress in Autism which suggests that the brain may not be the prime target but rather caught in the crossfire of system-wide abnormalities whose treatment can lead to improved brain function
Dr Andrew Levinson
Dr. Levinson is an Advanced DAN!R Practitioner and has been working with children on the spectrum and their parents since 2000. He is an orthomolecular psychiatrist, a yoga master and the founder of Vitality Health & Wellness, a center committed to reversing the symptoms of Autism and related disorders and the AMRIT Foundation, a non-profit organization that raises monies to help families seeking biomedical interventions.
Dr Liz Mumper
Dr. Mumper is a general pediatrician who treats children with autism spectrum disorders and attention deficits and conducts clinical research in her Virginia practice, Advocates for Children. She is Medical Director of the Clinicians Training for Defeat Autism Now! and co-chair of the DAN! Advisory Board.
Dr James Neubrander
Dr Neubrander is board-certified in Environmental Medicine with special interests in heavy metals and folate/B12 chemistry. He has pioneered the use of Vitamin Methyl B12 in the treatment of Autism and evaluated over 75,000 injections of Methyl B12. It is his opinion that there are certain factors that must be in place, or avoided, for clinicians and parents to realize optimal benefits.
Dr James Partington
Director of the Star School in California on Applied Behavioural Analysis (ABA), an important part of the overall treatment of ASD
Dr David Quiq
Dr. Quig received his PhD in Nutritional Biochemistry from the University of Illinois. He is currently Vice President, Scientific Support for Doctor’s Data, and has recently co-authored and facilitated several studies pertaining to toxic and essential elements in children with autism and learning/behavioral disorders.
Mr Stephen Shore
Mr Stephen Shore was diagnosed to have autism at young age. He obtained a Special Education degree from the Boston University. He actively participates in work relating to the education, social aspects, employment and rights of autistic persons. Mr Shore will be receiving his PhD in Special Education in September
I have no idea what Stephen Shore is doing in such company, nor why he, Temple Grandin, Valerie Paradiz and her son Elijah Wapner appeared at the recent
US Autism & Asperger Association Conference
Treating Autism as a Medical Disorder;
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together
Temple is probably the most famous autistic person in the world. When autistic people and their advocates appear at conferences like this they are not providing a countervailing view. They are giving tacit approval and validation to the quack remedies being espoused by their fellow speakers. who ask “If we are so off the wall why is Temple happy to share a platform with us?” Why indeed.
Meanwhile, a much less spectacular, but probably more important meeting is scheduled to be held in London next month. it features two of my friends, Larry Arnold and Dinah Murray.
THE POLITICS
OF AUTISM
7 pm September 2007
@ City Hall,
off Tower Bridge, London SE1
SPEAKERS
Dinah Murray (University of Birmingham)
Larry Arnold (Member, NAS Board of Trustees)
David Morris (Disability advisor, Mayor of London)
All speakers currently provisional
To register for the meeting please phone/ text 07875838968 or 020 79835773 or email david.morris@london.gov.uk or rocobley@hotmail.com.
Owing to circumstances beyond our control we cannot guarantee a personal response to any or all enquiries, but all requests for registration will be added to the attendance list.
VERY IMPORTANT NOTICE
Anyone wishing to attend this meeting MUST register in advance. No registration = No Admission.
August 13th, 2007
Posted by
Mike |
Autism, Quackery in Autism, politics |
11 comments
