Gluten free and Casein free (GF/CF) diets have been suggested for autism for many years. A survey of parent members of the National Autistic Society in 2005 found that even though only 7.5% cited gastro-intestinal (GI) difficulties as an issue for their child around half had used special diets of one sort or another. Between 10 and 20 percent reported improvements following the diet and around 10 percent wanted more research into diets and other biomedical interventions. Although most of the GI issues were reported in children with autistic disorder parents of children with Aspergers Syndrome supported the use of special diets in comparable numbers. In line with Paul Shattock’s oft quoted remark that nobody ever died of a gluten deficiency parents have often regard the GF/CF diet as essentially benign. It may be expensive and time consuming to implement but it cannot do any harm and may help with behaviour. So where is the harm in trying it?
The most obvious source of harm is the nutritional effect of limiting the type of foods offered to a growing child. Foods that contain gluten and casein also contain essential nutrients that may not be present in the GF/CF alternatives. Two years ago the National Institutes of Health reported on problems with bone density in autistic boys
The researchers believe that boys with autism and ASD are at risk for poor bone development for a number of reasons. These factors are lack of exercise, a reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets that exclude casein, a protein found in milk and milk products. Dairy products provide a significant source of calcium and vitamin D. Casein-free diets are a controversial treatment thought by some to lessen the symptoms of autism.
A recent study due to be presented at IMFAR this year went to great lengths to ensure that children on the GF/CF diet did not miss out on essential nutrients.
The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein.
They also tried to control for the effects of different treatments and therapies that might confound the results of a dietary trial by ensuring that all the subjects received the same early intensive behavioural intervention during the trial. Twenty two children aged between thirty and sixtysix months were enrolled in the trial but only fourteen completed it. One withdrew after proving positive for celiac disease. Another had an iron deficiency and the rest were unable to adhere to all the study requirements.
The trial lasted for eighteen weeks. A month into the trial each child received a cleverly disguised snack containing either gluten, casein, a combination of both or neither and went on to receive three of each type of snack in random order at one week intervals. The snacks were disguised so that neither the researchers, the children, their parents nor their teachers could identify them. The result was that there was no difference to sleep patterns, bowel movements, language or behaviour in any of the children.
The authors acknowledge the obvious weaknesses in this study. it had a small sample size and did not include children with GI disorders. However it was very well designed and provides a model for future studies. Another study, Absence of urinary opioid peptides in children with autism (Cass et al 2008) found no evidence of increased urinary peptides i autistic children compared to non-autistic controls. This is in line with Hunter et al (2003).
All this suggests that unless your child has an obvious GI disorder you should not even consider a GF/CF diet. Even if there are GI problems it is highly unlikely that urinary peptides are to blame. And if the peptides are not there why use the diet? The commercial labs that claim to routinely detect these peptides in samples from autistic children stand in marked contrast to the university and hospital labs that have failed to detect these peptides even when using very sensitive testing procedures. The study by Cass et al found evidence that suggested the presence of peptides in 25 out of 68 samples from children with an ASD. However that was not the whole story.
By HPLC analysis alone, 25 urine samples from the autism/Asperger group were selected as showing peaks in approximately the correct locations to be opioid peptides. For all 25, MALDI-TOF MS analysis of the relevant fraction found no instances of ions of m/z corresponding to opioid peptides. These results indicate that the peaks observed on the HPLC trace were not opioid peptides.
Then we have the evidence from America. Ibrahim et al 2009 found no evidence of increased GI disease in autistic subjects. A recent review published by the American Association of Pediatrics found no evidence base for an increase in GI disorders or for the effectiveness of dietary interventions in autism.
This does not mean that there is no connection between autism and GI disorders. Ibrahim et al conclude that
As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.
And the AAP review stressed that some so-called autistic behaviours may be indicative of gastro-intestinal distress and these children should not have these behavioural symptoms disregarded because they are autistic. As I wrote in my very first blog post
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. [...]
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Anyone with an autism diagnosis should be given a full medical work up in case there are any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions.
I would only add that “biomedical” in this context refers to evidence based medicine delivered by qualified professionals in a proper medical facility and not to the store front clinics of the alternative therapy business.
May 20th, 2010
Posted by
Mike |
Uncategorized, biomedical interventions |
6 comments
There was a time when the names Wakefield and Krigsman were synonymous with Thoughtful House. Wakefield was director of research. Krigsman was director of the gastroenterology clinic.
Dr. Wakefield is one of the founders of Thoughtful House. He has been an integral part of the organization since its inception, particularly in the research program.
That is what it used to say on the Thoughtful House website. Now it says nothing at all. The press release containing that statement has been removed, though it is still in Google’s cache. In fact all the press releases at Thoughtful House have been removed. That page is now “under construction.” So are the publications page and the page for research associates.
The links to conference presentations by Wakefield and Krigsman are broken. Krigsman you may recall left Thoughtful House around the same time as Wakefield. Krigsman’s biography and the gastroenterology FAQ at Thoughtful House are gone. If you Google them the link takes you to this one page website The announcement of Krigsman’s “new” research that is supposed to vindicate Wakefield is also gone from the website.
It is as if they are becoming non-persons, edited out of the record in a manner reminiscent of the old Soviet Union. So has there been a coup? I believe that Wakefield was forced out. After the GMC ruling his position was untenable. Krigsman’s departure was probably driven by business considerations to do with health insurance and billing procedures. But it does seem to have happened at an opportune moment for Thoughtful House
Their rising star is Bryan Jepson. His book is featured on the front page. He is the medical director at Thoughtful House. He has strong links to Defeat Autism Now. He seems to represent a return to traditional biomedical interventions for autism. These may be unproven but at least they are not disproven like the MMR hypothesis. Healing the gut and repairing the immune system via diet and supplements and normalizing behaviour via ABA may lack a sound evidence base but they are not yet discredited. Mainstream researchers continue to investigate them. Parents of autistic children who might be wary of anti-vaccine rhetoric and worried about invasive procedures and the dangers of chelation will consider other biomedical treatments.
That is not to say that Thoughtful House have rejected the anti-vaccine position completely. Laura Hewitson, their lead researcher now Wakefield has gone, is a plaintiff in the Omnibus Autism Proceedings. Her research appears tailored to prove her case before the vaccine court. But Thoughtful House is not going to be at the forefront of any anti-vaccine movement.
They will happily concede to parents beliefs in regard to vaccines while selling them diets, supplements and ABA programes. But the goalposts have been shifted away from vaccines to broader, vaguer environmental toxins within which vaccines are a special case affecting a minority of genetically susceptible children and not the driving force behind the so-called epidemic.
March 12th, 2010
Posted by
Mike |
Andrew Wakefield, MMR, Uncategorized, biomedical interventions |
6 comments
Last year I wrote a couple of posts (here and here) criticizing Polly Tommey for pulling expensive publicity stunts that resulted in her meeting with Prime Minister Gordon Brown and his wife at Downing Street. She presented herself as just a mother speaking for thousands of other mothers. Her remarkable success was contrasted with the apparent failure of autism organizations to work together for the benefit of autistic people.
At the time I pointed out that many other organizations had come together to support the Autism Bill, soon to become an Act of Parliament and to to advise the government via the External Reference Group. Chaired by the NAS chief executive, Mark Lever, with an autistic vice chair, it included organizations of autistic adults as well as parents. The only significant absence from the campaign were representatives of the biomedical cure organizations, including Polly Tommey’s Autism Trust, which seemed intent on disregarding the rest of us in pursuit of its own agenda.
The result of all our campaigning and lobbying of government officials and politicians saw the government adopt the Autism Bill, guaranteeing its passage into law, and shaped the adult strategy for autism that was published this week. Then Polly Tommey appeared on GMTV to discuss the strategy. We learned that it was her poster campaign that galvanized the government. They had consulted with her on the strategy and the next step was to be a new poster campaign which presumably would drive the next phase of the project.
Then I turned to Age of Autism (AoA)which provided more details.
In 2009 Polly Tommey was approached by Gordon Brown to represent The Autism Trust within the External Reference Group (ERG). This followed a meeting with the Prime Minister as a result of The Autism Trust’s “Dear Gordon Brown” charity billboard campaign. Polly was part of the ERG that helped formulate “The strategy for adults with autism in England (2010).”
Actually, after months of patient negotiation in which various organizations learned to work together and gained the respect of government officials and ministers, I can think of nothing more disruptive to the process than for someone to be parachuted in on the strength of an advertizing campaign and lay claim to all the credit. AoA also suggests that she organized the public consultation on the strategy.
Last year, following the campaign, Polly announced on national television that everybody could take part in formulating this plan; no one was left out of the strategy. It was announced via a direct email address to the Department of Health so that everyone who wanted could get involved.
AoA does not mention the 14 other organizations led by the NAS that campaigned for the Autism Act and organized over a thousand responses from their members to the consultation process. It does not mention any of the other members of the ERG. It does not explain why the ERG report does not list Polly Tommey as a member or that it published its report before she is supposed to have been invited to join it. Nor, if she already has the ear of the prime minister, are we told why another poster campaign is needed. Perhaps it will be aimed at persuading the rest of the autism community that we are all wrong and we should be following her lead instead.
One thing is certain. Although Tommey continues to support Andrew Wakefield and his failed hypothesis you will not hear about that in her campaign to take credit for the success of a movement in which she was at best peripheral and at times a hindrance.
All these organizations supported the passage of the Autism Bill through Parliament. No mention of Polly Tommey’s Autism Trust.
External Reference Group Members
Chair Mark Lever, Chief Executive, The National Autistic Society
Vice Chair and Chair, Choice and Control Group Anya Ustaszewski, Member of the Autism Rights Movement and an adult with Asperger syndrome
Chair, Health Group Juli Crocombe, Consultant in Neurodevelopmental Psychiatry
Chair, Social Inclusion Group Eileen Hopkins, Director – International Development, Autism Speaks
Chair, Employment Group Carolyn Bailey, Chief Executive, Autism West Midlands
Chair, Training Group Clive Stobbs, Chief Executive, Autism Anglia
Members:
Wendy Atkinson Oldham County Council
Chris Austin Liverpool Asperger team
Amanda Batten Head of Policy and Campaigns The National Autistic Society
Richard Bremer Goldman Sachs
Maria Bremmers Autism London
John Dickenson Parent of an adult with ASD
Christina Earl Surrey County Council
Graham Enderby Carer of an adult with ASD
Ian Ensum Clinical Psychologist
Andrew Grainger Autism Initiatives
Ian Hall Royal College of Psychiatrists
Carolann Jackson Parent of an adult with ASD and chair of SAFE (Supporting Asperger
Families in Essex)
Sandra Knaggs Living Ambitions
Ann Le Couteur Professor of Child and Adolescent Psychiatry, University of Newcastle
Marie Lovell Skills for Care
Julie Lynes-Grainger Learning and Skills Council
Campbell Main Parent of an adult with ASD
Melissa McAuliffe East London NHS Foundation Trust
Andrew Merchant Priory
Richard Mills Research Director Research Autism
Chris Mitchell Adult with ASD
Thomas Moore Surrey County Council
Andrew Monaghan Hampshire Autistic Society
Liz Osman Secondee to Treehouse from Connexions
Fred Parsons NORSACA
David Perkins Prospects The National Autistic Society
Rebecca Rennison Policy Officer The National Autistic Society
Carole Rutherford Parent of an adult with ASD
Dinesh Sattee Adult with ASD
David Shamash Member of the London Autism Rights Movement and an adult with Asperger syndrome
Sarabjit Singh Adult with Asperger syndrome
Kobus Van Rensburg Northamptonshire Transition and Liaison Team
Adrian Whyatt Member of the London Autism Rights Movement and an adult with Asperger syndrome
March 5th, 2010
Posted by
Mike |
National Autistic Society, Polly Tommey, Uncategorized, adults, campaigns, government, politics |
2 comments
If you watch a lot of cop shows you soon come to recognize the basic plot lines. Perhaps the villain is obvious from the start but is able to elude justice until a dogged investigator uncovers the evidence that will put him away. Or else all the evidence points in one direction but a lone detective refuses to buy it and unearths the secret that saves an innocent man from a miscarriage of justice. Sometimes the guilty are protected by their friends in high places. Then along comes the brave maverick policeman who overcomes all obstacles to expose the corruption and justice prevails at the end.
I was reminded of this by responses to the recent judgement against Wakefield by the GMC and the subsequent retraction of his 1998 Lancet paper. Wakefield’s defenders still see him as the brave maverick. Vaccines are the villain and so far they have evaded justice thanks to the corruption at the heart of the medical/research establishment. We have reached that stage in the plot where everything seems hopeless. Our hero has been all but destroyed. The conspirators are congratulating themselves. Evil has triumphed. Or has it?
Now, when they least expect it, our hero strikes. They have no answer to his new and devastating evidence. They realize their mistake and try to silence him. Too late! The truth will out and Justice shall prevail. Of course real life is not like the movies. But that fact is lost on many of Wakefield’s supporters. They clutch at the flimsiest of straws to convince themselves that we are about to enter the final reel when all will be revealed.
One such straw is Arthur Krigsman’s long awaited paper which supports Wakefield’s premise that gastro-intestinal disease and autism are connected. In fact it is so faithful to the master’s original that Krigsman even replicates Wakefield’s breaches of medical ethics. We are promised more studies and devastating proof that Wakefield was right along. This proof is so devastating that it could not be used in his defence at the GMC and had to be held in reserve until after his public humiliation and the destruction of his professional reputation (aka “the witch hunt,” “kangaroo court,” “censorship,” “conspiracy,” etc., etc.,)
At this point in the script I should be saying that the plot thickens. But sadly for Wakefield et al it seems that the plot is unravelling instead. His most recent paper, an attempt to diversify into mercury and vaccines has been withdrawn by the editor. no reason was given. It may the undisclosed conflict of interest from lead author Laura Hewitson or simply the fact that it is an atrocious piece of work. Meanwhile his fan base are doing their best with a number of gambits.
No parent ever complained to the GMC.
The GMC brought the complaint after it was made aware of Brian Deer’s allegations. As Deer points out in this comment on LBRB Wakefield’s parent supporters may have packed the public gallery and joined protests outside the hearing but the only parent to give evidence appeared for the prosecution not the defence.
Not only could Wakefield have called anybody he wanted (and he called nobody whatsoever, and didn’t even ask questions of the government’s vaccine supremo), but a parent of one of the 12 kids – Rochelle Poulter – DID give evidence. She appeared in August 2007 for the prosecution, and gave them a mass of documents which were devastating to Wakefield’s case. One of the letters was to Walker-Smith where she says that he’d told her that the research might not help her child, but might help other children. Devastating stuff.
There was an estabishment conspiracy to silence Wakefield.
All I can say is they did not do a very good job. Two of the most pro establishment newspapers in Britain, the Mail and the Telegraph, regularly carry pro Wakefield stories. The BBC still gives the pro Wakefield website, JABS, web address alongside every MMR story it runs. The Spectator, unofficial house magazine of the Conservative Party, continues to carry pro Wakefield stories from Melanie Phillips. Fiona Phillips (no relation) is still writing paeans to Wakefield in the pro-Labour Daily Mirror. Even the Guardian Group succumbed with a terrible front page article in the Observer that had to be withdrawn and a fawning two page spread by sports writer turned health editor. Meanwhile science that refutes Wakefield has been virtually ignored by the mainstream media outlets.
Government witnesses lied to the GMC
This potentially libellous accusation from Ron Moody made a brief flurry but seems to have faltered along with an open letter to the GMC from a retired sex therapist and the We Support Dr Andrew Wakefield petition against Times Newspapers. Claiming to represent “multitudes of citizens worldwide” they have collected around 2000 signatures so far. But with names like Seymour Butz, Fivepounds Forkidsblood and Al Coholic, not every signatory is taking it seriously.
Good Cop or Bad Cop?
To return to my original theme, I think that they are all watching the wrong movie. What about the story where the cop goes after the bad guy and finds out that he is innocent? But he is so convinced of his guilt that he goes after him for something else. And when the evidence fails again he decides to fake it. The bad guy has to be guilty. No way is he going to escape on a technicality like lack of evidence.
Wakefield is a surgeon with a research interest in gastroenterology. He was supposed to be investigating the causes of Crohns Disease. He thought a potential cause was measles virus, possibly measles vaccine virus. But his research was flawed and when others failed to replicate his results the theory was forgotten.
At this point if his prime purpose was to research Crohns he would have dropped the failed measles hypothesis and explored other venues. But Wakefield had a prime suspect - MMR. If he could not tie it to Crohns he would get it for something else. Why not autism?
But what if the bad guy was innocent all along? What if the cop let his obsession cloud his judgement, leading him to ignore the real evidence and fabricate his own so-called proof. We all know how that movie ends.
Sadly for us as well, real life is not like the movies. While Wakefield’s career as a serious medical researcher may be over he appears to have made good his escape and seems set to enjoy his ill-gotten gains in his Texan hideaway for some time yet.
February 15th, 2010
Posted by
Mike |
Andrew Wakefield, MMR, Uncategorized |
22 comments
Anyone with a reasonable scientific education can easily spot the flaws in the manifold claims of quackery. But for those who lack a reasonable scientific education, ie most of us, the sciency gloss that many quacks use to cloak their claims with credibility can be very persuasive.
This is especially the case with tests for metal poisoning. The quack doctors give a chelating agent to a patient and then take a urine sample and analyse it. These tests usually reveal levels of metals that are above the reference levels based on large scale population studies that are regarded as normal.
But now the American College of Medical Toxicology has issued an authoritative statement condemning the practise and pointing out the dangers.
Although the ACMT does not go as far as to call this practise fraudulent, it does state its
disapproval of the use of post-challenge urinary metal testing in clinical practice and the use of such test results as an indication for further administration of chelating agents.
People with safe levels of metals will demonstrate excess levels after such a provoked test. The quacks claim that the body sequesters metals in internal organs and the provocation is necessary to reveal the true level of metals in the body. This ignores the fact that the body is taking in, sequestering and excreting toxins continually. The provoked test is equivalent to wringing out a damp cloth that was quite happily drying out and pointing to the puddle as proof that the cloth was actually soaking wet.
Then there are the health risks. Stirring up all those metals and releasing them from sites in the body where they are doing no harm may increase the risks of toxicity. And the quacks do not stop at one test. They chelate and test, chelate and test over and over. Chelation does not just target toxic elements. Essential minerals like copper, iron and zinc are also excreted in quantities that may be dangerous to health. In the case of Tariq Nadama the “wrong” chelator, disodium edetate, removed so much calcium from his system that he died. The “right” chelator (calcium disodium edetate) would have still taken out essential minerals like copper, iron and zinc. Previous treatments of this unfortunate child for alleged aluminium toxicity had already depleted his iron levels.
Those parents who avoid intravenous chelators like edetate in favour of “safe” oral chelators like DMSA and DPMS should be aware that they can redistribute metals like mercury to sites within the body where they can do harm. The ACMT also points out that
There is published experimental evidence that deleterious effects may occur when chelation is applied in the absence of prior lead exposure.
They conclude
It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.
They make no mention of autism but their message is plain. There is no scientific basis for using provocation or challenge testing to diagnose metal poisoning. Therefore all the evidence from this type of testing that is used to support claims of metal poisoning in autistic children is worthless. And the repeated treatment of children with chelation agents for this non-existent poisoning has no benefits but carries risk of harm.
So when will the practitioners who carry out this abuse of children be told to stop or risk prosecution?
August 14th, 2009
Posted by
Mike |
Quackery, Uncategorized, abuse, chelation |
one comment
There has been some consternation amongst critics of Autism Speaks at the news that it has been designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI). Both LeftBrainRightBrain and The New Republic have articles explaining why this is not a good thing for the autistic community and their allies. Autism Speaks has a dubious record in misrepresenting the facts about autism and its refusal to appoint any autistic person to a position of influence or authority undermines its stated aim of achieving one voice for the autism community.
I can think of at least three routes to achieving one voice.
- A consensus position is achieved based on discussions involving the whole autism community.
- A single view prevails by force of argument based on the evidence.
- A single view held by a powerful organization prevails by force majeure.
In my opinion we are still a long way off developing the means to pursue route one. I think that the whole community is going to have to learn to live with some sort of pluralism in which many voices are heard and listened to. We are unlikely to achieve one voice except by force majeure and Autism Speaks seems to agree. It is using the wealth and power of its founders to impose their view as the voice of the autism community.
Does this mean that it will now impose its view on the United Nations? I think this is unlikely. There are thousands of NGOs involved with the UN. 1664 are associated with the DPI alone. At present I believe Autism Speaks is the only autism related NGO. But there is nothing to stop other organizations from applying. I will suggest this within the National Autistic Society. So long as you are a not for profit organization that can meet the criteria, you are free to apply.
I have seen suggestions that its critics should protest at UN recognition for Autism Speaks. This will have no effect on the United Nations and could reflect badly on us. Autism Speaks reflects the consensus opinion on autism in the larger community more so than do proponents of neurodiversity. It is much better, in my opinion, to raise our voices rather than be seen as trying to silence theirs. Autism speaks with many voices would be a possible slogan to organize around in the run up to World Autism Day on April 2nd next year. Getting a positive message for autism acceptance and the ideas of neurodiversity into the public arena will serve us better than a negative campaign.
Meanwhile, Autism Speaks official recognition by the UN could be quite useful. A few of us are waiting for answers to questions about autistic representation within Autism Speaks. Accoding to the criteria for recognition
the NGO should have statutes/by-laws providing for a transparent process of making decisions, elections of officers and members.
In view of their official status as an NGO I think it is in order to repeat our questions and to copy our requests for transparency to the DPI at the UN. Contact details for the DPI are here.
It is also the sixtieth anniversary of the Universal Declaration of Human Rights. Although it seems to be honoured more in the breach than in the observance, this is an important campaigning tool. Another of the criteria for recognition states that
the NGO must support and respect the principles of the Charter of the UN and have a clear mission statement with those principles.
So how does Autism Speaks propose to mark the sixtieth anniversary? In particular, what steps do they propose within the autistic community
to ensure that every individual, no matter where they live, or in what circumstances, understands the rights to which the Universal Declaration entitles him or her.
It would be instructive for self advocacy organizations within the autistic community to approach “the world’s largest autism advocacy organization” and “officially designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI)“ to ask for its support in campaigning for the rights enshrined in the Universal Declaration to be applied to autistic people everywhere. It would seem appropriate to use this opportunity to call upon the incoming President to announce a date when the USA will ratify the UN Convention on the Rights of Persons with Disabilities.
Now that Autism Speaks is open to public scrutiny as an official NGO of the United Nations I think that proposals for joint activity around principles held in common with the UN are a positive way to get our messages across and challenge the old thinking.
December 26th, 2008
Posted by
Mike |
Autism Speaks, Neurodiversity, Uncategorized, disability rights |
25 comments
Nicky Reilly, aged 22, is on trial for a failed attempt to bomb a restuarant in Exeter. He has Aspergers Syndrome and additional learning difficulties. According to media reports he has a mental age of ten. Five years ago he converted to Islam and began to attend the local mosque.There is no question of any blame attaching to the local muslim community in his home town of Plymouth. But two men, now believed to be abroad are alleged to have been involved.
The facts of the case are straightforward. After becoming a Muslim Reilly became more intolerant of wrongdoing in others, both in his family and in the socially deprived area of town where he lived in an overcrowded flat with his mother and two half brothers. According to the Guardian,
Several say he began to criticise them for “ungodly” ways. “I used to hang around and cause a bit of trouble,” said one 19-year-old boy. “He started coming up to me and ranting about me. He was risking a kicking but we knew he wasn’t right in the head so left him alone. We knew he used to have a go at his family too, so we didn’t really take much notice.”
This behaviour is consistent with Aspergers Syndrome. Attempting to blow yourself up in a crowded restaurant is not. Reilly was naive and not malicious. His nickname as a teenager derived from his size and his gentle nature. He was known as the BFG, the Big Friendly Giant of the eponymous children’s tale.He was probably unhappy. A schoolboy acquaintance told the Guardian,
“He was a quiet boy. He was a follower rather than a leader. We used to have a laugh with him, tease him, but he never lashed out. He was a gentle lad.”
Where they laughing with him or at him? And would Reilly have known the difference? One reason he gave for his conversion was
that he had been told you will get a better life when you die if you are a Muslim.
The Guardian also reports on his personal distress when his girl friend ended their relationship. He became depressed, self harmed and needed psychiatric treatment. This experience added to his vulnerability. I surmise that it was this vulnerability that attracted those who recruited him to radical Islam and also explains why he was such a willing recruit. It is classic cult psychology. He had led a miserable life. It was easy to blame those around him and in Reilly’s case probably true. In Islam he had found personal acceptance and a rationale for his mistreatment in the “godlessness” of his tormentors. Then came the further, twisted logic that persuaded him that he could punish the godless and, through martyrdom, attain the “better life” which had thus far been denied to him. His recruitment last year would fit with his decision to change his name to Mohammed Rashid Saeed-Alim and intensify his religious devotions.
Thanks to the efforts of his unknown mentors, who are now believed to be abroad, he acquired the knowledge and the determination to travel to Exeter with bomb making materials with the intention of detonating them in a busy restaurant. He bungled the attempt, injuring himself and no others. Whether he is a committed terrorist or a witless dupe, he could easily have killed scores of people that day and clearly needs to be dealt with. But how?
The police, unusually in a case terrorism, seem quite sympathetic. He was treated as a vulnerable adult in police interviews. His mother, in a BBC interview, is convinced that Reilly is a victim and not a criminal. She thinks he should be in hospital and not in prison.
This whole affair raises a number of questions in my mind and I am not altogether certain of the answers.
- Despite the obvious connection with Islamic terrorism would it be more useful to consider Reilly alongside those unaffiliated lone killers who make the headlines with depressing regularity?
- Although I believe that Reilly’s autism is a part of the story, it is not the whole story and should not define our response. It is one thing to argue for accommodations in everyday life to assist autistic people. What are the ground rules for expecting accommodations when autistic people become a demonstrable threat to society?
- If Reilly had been an autistic Asian or Arab Muslim rather than a white autistic convert, how much sympathy or understanding would he be getting now?
- Should people like Reilly go to prison because, whatever your history of abuse, there can be no extenuating cicumstances that mitigate the crime of terrorism?
- If Reilly was not autistic he would be found guilty, go to prison for a long time and then be released. Using autism as a part of his defence may get him sectioned under mental health legislation and detained with no hope of release. Common criminals do the crime, serve the time and are freed to repeat the process or not. But if you are sectioned you can only be released if you can prove beyond reasonable doubt the unlikelihood of your reoffending. You are detained in advance for crimes you may yet commit.
With increasing numbers of people being identified with autism it is inevitable that there will be increasing numbers of defendants in criminal cases identified with autism. The mental health community has been there already with stereotypes of the criminally insane. We should take account of their experience whenever someone seeks to invoke autism or aspergers as a defence in criminal proceedings.
October 16th, 2008
Posted by
Mike |
Uncategorized, adults, mental health |
11 comments
This blog is an infomercial for my favourite autism charity - The National Autistic Society.
The present financial crisis is already affecting the voluntary sector. Charities are suffering as the recession affects people’s ability to give. In the UK at least 20 charities have lost an estimated £125 million in reserves that were placed on deposit in high interest accounts with the Icelandic banks that crashed last week.
There are some really tragic stories like a children’s hospice that lost £5 million. Some charities have lost all their reserves and may go out of business. Local authorities may have fared even worse - they had over £1 billion invested in Iceland. This money is lost. And, unless the government steps in the only way for local authorities to recoup their losses will be to raise taxes and cut services. This, of course, will impact upon the most vulnerable people in society who depend upon council services. Charities who would normally step in to fill the gap are already operating on reduced budgets.
I think the government should intervene. This week they announced a £500 billion rescue package for the banks. Another billion to help the real victims of the recession does not seem out of place. But a change in the tax laws could make things even worse for charities. The irony is that it is a measure that was introduced earlier this year to close a loophole that was being exploited by the banks and finance houses, of all people! They were employing tens of thousands of staff on rolling, temporary contracts in order to evade payment of hundreds of millions of pounds in national insurance contributions to the Treasury. The government response was to introduce a charge on the banks of 17.5% on the salaries of temporary staff. But many charities operate with a tiny full time staff and employ temporary staff to deliver projects. They too will be liable to what is effectively a payroll tax of 17.5%. Coming on top of everything else this will be enough to force some charities to close down.
The National Autistic Society is OK for now. We have a prudent level of reserves that are securely invested and most of our staff are on contract. But our future income faces downward pressures. Local authorities who buy into NAS services will probably be operating on reduced budgets and people who donate money to support things like our helpline and training for parents of newly diagnosed children will also be feeling the pinch.
Whatever happens to the economy, we are not expecting to see a recession in autism. Millions will continue to visit the NAS website. Tens of thousands will continue to ring the help line. Thousands more will use the information and advocacy services, attend the Help! meetings etc. And hundreds of adults and children will benefit from the direct provision of a range of services by the NAS such as schools, residential homes, day centres and supported employment schemes.
Simply the best
I believe that the NAS is the best national autism organization in the world today. We provide a wealth of services. We are actively encouraging autistic people to take a leading role with seven diagnosed autistic people elected to the Council and one elected to the Board of Trustees. Parents like myself remain in the majority but we have just elected our first sibling councillor as well.
Honesty
The current campaign, that began with Make Schools Make Sense and continues with I Exist, combines honesty about the problems that autism can bring with a positive attitude towards autistic people and their ability to make a difference in their own lives if we can give them a fair chance.
The latest stage of the campaign is darker and focuses on what happens all too often when autistic people and their families are not given a fair chance. Bullying, isolation and despair are the triad of consequences if people are not given a fair chance. So building the paid up membership and stepping up our fundraising is very important right now. We want to make a difference and we need your help.
Anyone can join the NAS. We have national and international membership; individual and organizational membership; family membership and concessions for autistic people, students and the unemployed.
Anyone can give money to the NAS. If you are a UK taxpayer remember to tick the the box for giftaid.
Not everybody has money. But we all have time and skills. Consider donating your time or your expertise to the NAS. We need volunteers for things like our help line and our parent to parent scheme (training provided). We need skills that can make a difference at local level - expertise in fundraising, accountancy, advocacy, publicity, etc. One branch might need a web site designer. Another wants a befriender. Contact the national office if you want to help.
Thank You!
This has been an infomercial on behalf of, but not authorized by, the National Autistic Society.
October 12th, 2008
Posted by
Mike |
National Autistic Society, Uncategorized, autism acceptance, autism parents, parents |
5 comments
10 years go a remarkable press conference took place to mark the publication of a new study in the Lancet. It was remarkable because this was a preliminary report, based on a series of only twelve case studies - not the normal stuff of press conferences. It suggested a new disorder, autistic enterocolitis. There had been suspicions about a link between gut disorders and autism for years. While this study was far too small to settle the issue it did suggest that a large scale study was called for. But why a press conference?
Richard Horton, editor of the Lancet, explains
“In the week of the paper’s publication, some of the Royal Free research team decided to hold a press conference to announce their findings. This gave them an opportunity to express the benefits of the MMR vaccine and the inconclusive nature of their results in respect to the link between the syndrome and the vaccine.” (MMR Science and Fiction by Richard Horton. Granta Books 2004)
So why did they issue this scaremongering press release, which Horton quotes in his book?
“The majority opinion among the researchers involved in this study supports the continuation of MMR vaccination. Dr Wakefield feels that vaccination against the measles, mumps and rubella infections should undoubtedly continue but until this issue is resolved by further research there is a case for separating the three vaccines into measles, mumps and rubella components and giving them individually spaced by at least 1 year.”
The answer, implicit in Horton’s account, is that Wakefield was a dynamic researcher who was shaking up a moribund department of medicine that had been resting on its laurels. He was their star player and was granted more leeway than normal in the hope that he would deliver glittering prizes. Wakefield was pursuing his own glittering prize. He was convinced that there was a connection between measles virus and inflammatory bowel diseases like Crohn’s syndrome. He suspected that measles vaccine might also be involved. He was developing his own single vaccine for measles that would bypass these difficulties and had issued a patent application in the name of the Royal Free Hospital in 1997. He was also employed by solicitors to demonstrate a link between MMR and autism, particularly where it involved symptoms of inflammatory bowel disease.
How much of this was known to his colleagues at the Royal Free? Did it influence their better judgement and allow Wakefield to hijack the press conference? Would there even have been a press conference without Wakefield? Did Wakefield’s ambition and personal conviction lead him to breach the ethics of his profession? All this is still the subject of conjecture and debate and, with regard to ethics, ongoing disciplinary hearings at the GMC. What is beyond conjecture is that, despite no credible evidence to support it, the idea that MMR causes autism became firmly implanted in the public consciousness. Vaccination rates declined and measles is once more endemic in the UK. It is widespread in Europe and spreading in America where concerns about the safety of a mercury preservative in vaccines coalesced with concerns about MMR to create vaccine resistant hotspots, primarily in affluent areas where people can afford the privilege of being the “worried well.”
All this comes at a time when deaths from measles are declining rapidly in the developing world thanks to a vigorous campaign of vaccination. To place this in context, deaths from measles are still statistically insignificant in Europe and North America. Success for the vaccination campaign in Africa, Asia and South America means that “only” around 250,000 children died from measles related causes last year compared to the 750,000 that was commonplace a decade ago.
Given the propensity of wealthy Americans and Europeans for foreign travel to exotic places it would be a tragic irony if the fragile success of the vaccination programme in the developing countries was compromised by western tourists carrying the virus into unvaccinated parts of the third world. It would be even more tragic if the anti-vaccine movements in the USA and Europe gained a foothold in those countries that desperately need vaccines and undermined the efforts led by the World Health Organization, with equally devastating consequences.
So one would hope that a definitive study that effectively disproves any link between MMR and autism would be trumpeted from the rooftops and receive coverage that was commensurate with the thouands of scare stories about MMR that have been in circulation for at least a decade since Wakefield’s inglorious announcement.
We shall soon have an opportunity to judge. Less than an hour ago Forbes Magazine reported on a new study which found no relation between MMR and autism. Of course there have been numerous studies before. These have singularly failed to persuade the Wakefield acolytes and their media friends. As Ben Goldacre noted last week:
“In the Journal of Medical Virology March 2006 there was a paper by Afzal et al, looking for measles RNA in children with regressive autism after MMR vaccination, using tools so powerful they could detect measles RNA down to single-figure copy numbers. It found no evidence of the vaccine-strain measles RNA to implicate MMR. Nobody wrote about this study, anywhere, in the British media (except for me in my column).
This was not an isolated case. Another major paper was published in the leading academic journal Pediatrics a few months later, replicating the earlier experiments very closely, and in some respects more carefully, also tracing out the possible routes by which a false positive could have occurred. For this paper by D’Souza et al, like the Afzal paper before it, the media were united in their silence. It was covered, by my count, in only two places: my column, and a Reuters news agency report
[...]
Journalists like to call for “more research”: here it was, and it was ignored. Did the media neglect to cover these stories because they were bored of the story? Clearly not. Because in 2006, at exactly the same time as they were unanimously refusing even to mention these studies, they were covering an identical claim, using identical experimental methodology: “US scientists back autism link to MMR” said the Telegraph. “Scientists fear MMR link to autism” squealed the Mail.
What was this frightening new data? These scare stories were based on a poster presentation, at a conference yet to occur, on research not yet completed, by a man with a well-documented track record of announcing research that never subsequently appears in an academic journal. This time Dr Arthur Krigsman was claiming he had found genetic material from vaccine-strain measles virus in some gut samples from children with autism and bowel problems. If true, this would have bolstered Wakefield’s theory, which by 2006 was lying in tatters. We might also mention that Wakefield and Krigsman are doctors together at Thoughtful House, a private autism clinic in the US.
Two years after making these claims, the study remains unpublished.”
It will not be so easy to ignore this report.
- The study is a deliberate attempt to replicate Wakefield’s original study. It looks for measles in the gut of autistic children with bowel disorders. Furthermore it includes a control group of non-autistic children with bowel disorder.
- It uses three different laboratories to test its results, including the original laboratory that Wakefield used. This lab, run by Professor O’Leary, had its results in the Wakefield study dismissed by world expert Stephen Bustin, because of cross-contamination that made them meaningless. Now that it has literally cleaned up its act its results concur with the other two labs: no evidence of measles in the intestines of autistic children with bowel disorder.
- “We found no difference in children who had GI complaints and no autism and children who had autism but no GI complaints,” Dr. Ian Lipkin of Columbia University told reporters in a telephone briefing.
- There was no temporal association between MMR vaccination and onset of GI symptoms.
- “We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism,” Dr. Mady Hornig, also of Columbia, said in a statement.
Look at those names. Mady Hornig was the author of a controversial study that suggested a link between the mercury in some vaccines and autism. Ian Lipkin is her long time collaborator. Rick Rollens, a Californian politician who has been a powerful advocate for a vaccine induced autism epidemic and used to believe that the MMR vaccine was the final straw in his own child’s autism is quoted by Forbes commenting favourably on this study.
Not even the most diehard anti-vaccine activist could claim that this is just another big pharma/big government sponsored cover up. Or could they? What they are claiming, judging by some of the anti-vaccine contributors to the Environment of Harm email list is even more bizarre. Because O’Leary’s lab has produced bone fide results that contradict Wakefield they are arguing that the results he produced supporting Wakefield must be equally valid. I kid you not. It is as if someone watching Gordon Ramsay’s Hells Kitchen were to argue that, because the eventual winner delivered a perfect service in the final, their undercooked disaster in the opening round that very nearly got them eliminated also had to be cookery of the highest order.
I suspect that the true believers will never be persuaded. [Update: I was right. Kev has just blogged the NAA response. They call this a CDC study throughout to avoid admitting that "one of their own" Mady Hornig authored this study. NB for new readers: CDC in the NAA demonology equates to big pharma/government cover-up.] But I am encouraged when open minded scientists can pursue a hypothesis, believing it to be correct, and publish results that prove themselves wrong. So full marks to Lipkin and Hornig for upholding scientific values.
More blogging here
http://www.blacktriangle.org/blog/?p=1833
http://leftbrainrightbrain.co.uk/?p=1252
http://www.autismvox.com/mmr-vaccine-does-not-cause-autism-not-that-you-didnt-know-that-already/
http://blogs.discovermagazine.com/badastronomy/2008/09/03/antivax-new-evidence-shows-again-no-link-to-autism/
http://onedadsopinion.blogspot.com/2008/09/now-is-it-over.html
UPDATE
Now Orac joins the fray.
September 4th, 2008
Posted by
Mike |
Andrew Wakefield, MMR, Uncategorized, science, vaccines |
6 comments
The latest issue of Communication, the members magazine of the National Autistic Society contains a two page article by Dr. Mike Fitzpatrick, an edited excerpt from his forthcoming book, Defeating autism, a damaging delusion, which is due out in October. Dr Fitzpatrick’s son was diagnosed with autism in 1994. His earlier book, MMR and Autism, was a vigorous defence of the vaccine combined with a thorough reply to Andrew Wakefield and a sustained rebuke of the medical establishment whose own ham-fisted response enabled Wakefield and his supporters to dominate the media coverage.
The resulting drop in vaccination rates has allowed measles to become endemic in the United Kingdom once more. Meanwhile autism prevalence has continued to increase to the point were the NAS estimate of a prevalence rate of 1 in 112, which attracted so much criticism in the 1990s when it was first suggested, is now increasingly supported by data from epidemiological studies in the UK.
In MMR and Autism Dr Fitzpatrick briefly discusses what he calls “Alternative Autism,” (chapter 6 pp 77 -100) which roughly equates to the biomedical movement. In his latest book this alternative autism takes centre stage. I detected at least four themes in the excerpt in Comunication.
- These alternative therapies do not work.
- The science behind them is flawed.
- Some of these treatments are potentially dangerous.
- The real damage is in the way that the quest to “defeat autism” demonizes autism, and by extension, people with autism are similarly demonized.
I do not think that Dr Fitzpatrick is a recruit to the ranks of Neurodiversity just yet. But in the absence of the science based medical interventions to which he aspires, he is clear that
The most damaging aspect of the crusade to ‘defeat autism’ is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook sometimes project a negative view of autism as a destructive disease process. They can portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. Parents often describe their own predicament in terms of grief and loss and as one of unremitting battle against the corrosive impact of autism on their child, their marriage and their wider family. This implicitly disparages and dehumanizes people with autism. It is not surprising that such a negative attitude towards autism is sometimes expressed in a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease. (Communication:Autumn 2008 p15)
I fully expect a number of parents to be outraged by this. They will take it to mean that Dr Fitzpatrick is suggesting they do not love their children. I take it to mean that, for some parents who adopt the unorthodox biomedical outlook, their love will be measured by the lengths they are willing to go to in order to provide these biomedical treatments. I have seen this expressed as “Love the child. Hate the autism.” And your love for your child is often presented as a function of how much you are willing to sacrifice in order to express your hate for autism.
Dr Fitzpatrick offers a more positive alternative.
My aim is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead ends offered by the perspective of ‘defeating autism.’ (Communication:Autumn 2008 p15)
This reminds me of another article in Communication by Rita Jordan last winter which argues for a distinction between autistic spectrum disorder and autistic spectrum condition. Professor Jordan’s argument is that if we use the term autistic spectrum for both the condition and the disorder, in the first case we should be arguing for accommodations to take account of a recognised difference, while in the second case we have a disorder that requires interventions. In reality most people on the autistic spectrum probably require both accommodations and interventions. The balance will doubtless change during their lifespan. Professor Jordan asks
“So what would this mean for diagnosis? It would still be important to diagnose the disordered group and this could still be a medical category, but based not on differences from the norm (typical) but on the basis of disruption of development and functioning. Those who just have a different processing style would still need a way of having this identified to enable autism-friendly environments and approaches and to put them (and their parents) in touch with similar others. But this need not be a medical ‘diagnosis’ but a psychological assessment. Both groups need to have their common humanity respected and so, even with the best intentions, we should avoid characterising non-typical functioning children as ‘non-human.’
‘Defeating autism’ would then seem absurd: no-one would want to reduce the diversity of human nature and so deny the contribution of so many unique individuals.” (Communication: Winter 2007 p12)
Dr Fitzpatrick and Professor Jordan are tackling this question from different perspectives and their positions are quite different. But in contrast to the “unorthodox biomedical outlook” I can find common ground with both their positions and can envisage a time when we all three might be in broad agreement. I see no such prospect with proponents of the “unorthodox biomedical outlook.”
That seems the most important point to me. Some of us want to know and others think they know already. I would like to think that Dr Fitzpatrick, Professor Jordan and myself are all open to persuasion. And part of that openness has to include the possibility that we are wrong and the biomedders are right. I see little evidence to suggest a similar attitude in the biomed camp.
August 29th, 2008
Posted by
Mike |
Communication, DAN!, Uncategorized, biomedical interventions, science |
17 comments
