The Ageing of Autism

 

BACKGROUND

When data from California emerged in 1999 that suggested a dramatic increase in the rate of autism it was taken by some advocates as evidence for an epidemic. This was problematic because the scientific consensus is that autism is fundamentally genetic and you cannot have a genetic epidemic. Therefore there had to be some other explanation for the Californian data. The authors stated that their data provided no evidence for or against the idea that autism was increasing. But if more people were entering the system the obvious conclusion was that autism was on the increase. One idea was that the genetic “bullet” required an environmental “trigger” and perhaps there were more triggers now than before. About this time two ideas were suggested concerning vaccines. In the UK the MMR vaccine was implicated in the now infamous Lancet paper by Andrew Wakefield. in the USA Thimerosal, a mercury based preservative commonly used in vaccines, but never used in live vaccines like MMR, was proposed as a possible source in an article in Medical Hypotheses.

Both these ideas were tested and found wanting by medical researchers. But thanks to the internet both ideas had already spread amongst parent advocacy groups. These groups were used to battling with unsympathetic government agencies both for recognition of their children’s needs and for resources to meet those needs. So official denials of the vaccine link were met with predictable cynicism. The media picked up on the controversy and presented it as a human interest story: brave maverick doctors and campaigning parents taking on an unfeeling system that denied its culpability for the epidemic and refused to meet its obligations.

THE HIDDEN HORDE

So the idea of an autism epidemic caused by vaccines went mainstream. Following the public disgrace of Wakefield the vaccine link may no longer resonate with the media or the general public but the idea of an epidemic has survived. Those of us who question the notion of an epidemic of recent origin are challenged to explain the lack of autistic adults. Where is this “Hidden Horde?” There remains a devoted band of true believers in the vaccine link who frequent the comments sections of blogs and other social media sites. They often pose the question thus. This is a recent comment on Emily Willingham’s blog.

That British study found all the missing adults by asking survey questions. I don’t want to hear about a 50 year old man who lives alone and would rather stay home and read a book than go to a party. I don’t want to hear about a retired bus driver with a wife and a family who just discovered he has Asperger’s.

What I want to see are lots of adults like so many children that I know personally. I want to see the 40, 50, and 60 year olds who flap their hands, don’t speak or who have echolalia or who scream endlessly. I want to see adults who rock and spin and line things up like our kids do, along with ones who bang their heads on the walls endlessly and are still in diapers. I want to see the adults who have to be watched constantly because they’ll wander off at will. And I especially want to see middle aged and elderly people that are now called autistic and whose health histories include starting off as normally developing babies, but who suddenly and dramatically lost learned skills and regressed into autism. Finally, I want to see older people with autism who also have the health problems our children do, namely, bowel disease, seizures, and sleep disorders, to name only a few.

Unless and until you can show us adults with classic autism like we see in our children, this proves nothing.

Anne Dachel, Media editor: Age of Autism

Dachel and those like her are either ignorant of the facts or are misrepresenting them.

  • Much of the increase in autism has been driven by changes in diagnostic criteria to include those whose cognitive and/or communication skills would have excluded them in the decades prior to the “epidemic.” I find it ironic that these same people are now complaining that fresh changes to the criteria will exclude more high functioning types and lead to the denial of services to people they have previously dismissed as not being truly autistic.
  • The children Dachel describes are not the norm, even amongst those with so-called “classic autism.” I say this based on my experience of teaching these children for thirty years in a school for children with severe learning difficulties in the UK.
  • A tiny minority remain non-verbal, prone to self harm and violent tantrums into adult life. But many more learn to talk, to manage their own behaviour and acquire sufficient self help skills to live with some independence in the community. I see these changes in children aged 2 to 19 years old.
  • It is reasonable to expect that progress to continue into adult life, especially for those without significant impairments in cognitive and communication skills.

THE HIDDEN DATA HOARD

There is a problem regarding those who do have significant impairments in cognitive and communication skills. We have very little data on autism through the life span for these individuals, especially the older generation who may have missed out on an autism diagnosis when educational subnormality (UK) and mental retardation (USA) were more commonly diagnosed in this population. That is why I am grateful to Cos Michael, Autism & Ageing Project Manager at the National Autistic Society  for alerting me to some American research entitled “Prevalence of selected clinical problems in older adults with autism and intellectual disability.”

The study compares adults with autism (ASD) and Intellectual disability (ID) to those with ID alone. They took two survey samples from consecutive years, 2009/10 and 2010/11. They excluded those individuals with profound ID for whom any differential diagnosis is problematic as well as those whose level of ID was unspecified. Thus we had a group of individuals whose diagnosis with either ID or ID and ASD together could be ascertained with a reasonable degree of confidence. The primary focus of the study was on medical and  behavioural problems in older adults with ASD. They found no significant difference between the ASD/ID group and the ID group regarding physical/medical disabilities including epilepsy, but a significant increase in behavioural problems in the ASD/ID group, especially destructive or self injurious behaviour. Because the cut off point was age 59 there was little data on the impact of those diseases of old age like Dementia on the autistic ID population.

I was also interested in another aspect of the study. What light could it throw on the prevalence of ASD amongst  individuals with ID? ID affects around 2% of the population. Here we had figures recording the proportion of those with ID who also had ASD over a period of thirty years. First some caveats. This is not epidemiological data, any more than the Californian DDS data was. These are surveys. The 2010/11 survey has a much smaller sample than the 2009/2010 survey. We have no idea how the exclusion of subjects with profound or unspecified ID affected the results because we have no indication of how many of them were autistic. The authors acknowledge that the lack of unique subject identifiers means that that may have been some overlap over time or across states. A few individuals may have been counted twice. They are also aware that the potential for under diagnosis in older individuals means that some in the ID only group may have had an undiagnosed ASD.

So this study is indicative rather than conclusive. Bearing this in mind the raw data still suggests that there is a significant adult population with ASD and ID that exceeds the figures suggested by early prevalence studies.

Table 1 Demographic variables among the ASD group and the ID-only group in the 2009 to 2010 NCI sample of adults aged 30-59 years (adapted from Kats et al. Journal of Neurodevelopmental Disorders 2013, 5:27)

Age ASD and ID(n = 438), number (%) ID-only(n = 4,551), number (%)
30 to 39 years 190 (43) 1,654 (36)
40 to 49 years 154 (35) 1,326 (29)
50 to 59 years 94 (21) 1,571 (35)

Table 2 Demographic variables among the ASD group and the ID-only group in the 2010 to 2011 NCI sample of adults aged 30-59 years (adapted from Kats et al. Journal of Neurodevelopmental Disorders 2013, 5:27)

Age ASD and ID(n = 298), number (%) ID-only(n = 3,963), number (%)
30 to 39 years 148 (50) 1,291 (33)
40 to 49 years 100 (34) 1,473 (37)
50 to 59 years 50 (17) 1,199 (30)

Leaving aside those aged 30 to 39 in 2009/10/11 who are most likely to have been exposed to whatever environmental factors are supposed to have triggered the “epidemic” in the last quarter of the 20th Century, the proportion of those with an ID who also have an ASD suggests a prevalence in the range of 11 to 15 in 10,000 amongst adults with ID born in the 1950s and 1960s.

This is greater than figure of 4.5 in 10,000 found by Lotter (1966) but more in line with Wing and Gould’s finding of a prevalence of 20 in 10,000 for a population of children in special education in the Camberwell study. (1979) Gillberg reported similar findings in Copenhagen (1986) for children with special needs. (References for all studies mentioned in this paragraph can be found here.)

Perhaps more startling is the fact that Emerson and Hatton (2004)  estimate that less than a quarter of people with ID in the UK are known to health and social care agencies. The rest are managing in the community with no support. Presumably some of those are autistic as well. This all goes to suggest that there are already more ageing autistic adults than we know about and we are ill equipped to understand their needs, let alone provide for a dignified passage through old age.

An Inflammatory Argument

sisyphusI am beginning to feel a real sympathy for Sisyphus, who was punished for his sins by the ancient Greek gods and condemned to roll a stone uphill for all eternity. Sisyphus’ sin was to imagine he could use trickery to outsmart the gods and cheat death. The punishment for his hubris was an eternal life of toil. My sin was to imagine that once you have *refuted* a stupid argument about autism you can move on and forget about it. Alas, no. The stupid, it burns. And when it’s not burning it smoulders. So, in the months since my last post, all manner of myths about autism have refused to die. Even the most unlikely embers can burst into flames. Then we have to have the argument all over again. We will never convince the true believers. But new people turn to the internet for information all the time and false information has to be challenged.

This happened with a recent story on the BBC website about the building of a new school for autistic children. The piece described how the building was being made autism friendly by accommodating the sensory needs of autistic children. It also discussed the reasons for creating fresh specialist provision at a time when the emphasis is on inclusion and  educating all children in the mainstream and briefly referred to possible reasons why more boys are diagnosed than girls, especially at the more able end of the spectrum. It was a very good article. It faced up to the disabling effects of autism without demonizing or scaremongering. At the same time it showed how society can lessen the impact of autism by making adjustments to meet people’s needs. This was achieved by designing an autism friendly school. Architects take note. Getting rid of harsh lighting and bright, shiny surfaces and replacing sharp corners with curves is not just autism friendly. It is people friendly.

When I turned to the comments section it had been closed. But not before a supportive and intelligent discussion had been hijacked by those who insist that vaccines cause autism. I am not going to tackle that particular canard right now. It will never go away. At least we have succeeded in limiting its scope and influence so it no longer attracts mainstream support. But tagged on to the end of the discussion another ember was rekindled, namely that there is an association between autism and acetaminophen (more commonly known as Paracetamol in the UK or Tylenol in the USA). This is a spin off from the vaccine myth that has its origins in the use of Paracetamol to treat localized irritation or fever, a common side effect of the MMR vaccine. So instead of the vaccine causing autism it is the medication taken after the vaccine!

I first encountered this hypothesis in an article by Schultz et al. in 2008. It was published in a respectable journal, Autism, that is supported by the National Autistic Society. But it is a weak article that drew this critical response. Schultz recruited parents from an online autism discussion group and asked those parents to recruit the controls from amongst their acquaintances. This was a recipe for massive selection bias. In addition the sample size was small. No child was examined. No diagnosis or case history was independently verified. Everything was done by parental questionnaire. I checked PubMed for any follow up. Schultz published two further articles in obscure journals. In one,  a five page discussion of the literature he offered the following.

The role of acetaminophen (paracetamol) in an increased risk for asthma is described and a possible similar link to an increased risk for autism is suggested.

Another five page discussion of the literature ends with this hypothesis.

The purpose of this report was to explore a possible correlation between acetaminophen and autism which acts through activation of the cannabinoid system. If this hypothesis is correct, it opens new avenues of investigation for possible autism treatment including
agonists and antagonists of the CB1 and CB2 receptors.

And finally, when he did join a serious study, using genetically modified, socially impaired mice, they found that acetaminophen actually improved sociability which is often impaired in autistic individuals who have difficulties with social understanding.

Hence, it appears that other indirect actions of acetaminophen, including 5-HT receptor agonism, may underlie its sociability promoting properties outweighing any CB(1) mediated suppression by locally-elevated endocannabinoids in these mice.

So there we have it. A very tenuous link between paracetamol and autism was suggested five years ago. Two years later a possible biological pathway via activation of the cannabinoid system was proposed. But when this hypothesis was tested last year the benefits of paracetamol were deemed to outweigh the remote possibility that it might be connected to autism.

However, it was the original study that made the news. It had power in the public mind because it was about parents telling their story. It was easy to understand and easy to believe. So, five years later, it is still making the rounds, even though there is no science to support it and what evidence there is actually contradicts it.

* I use the word “refute” in the old sense of providing compelling evidence against an argument and not the weaker modern sense where “refute” is used as a synonym for “deny”.*

 

Why are Wakefield’s views on MMR still news?

Wakefield ipaper

Today’s i Paper and Independent carry a front page story that gives Andrew Wakefield everything he could wish for. Two days ago I blogged a piece on Wakefield’s recent attempt to capitalize on the measles outbreak in Wales. He issued a statement on Age of Autism, a blog that reflects the views of its sponsors, US organizations like Safe Minds and Generation Rescue. For them autism is a man made epidemic caused by vaccines and other environmental toxins. It can be cured by a combination of diets, vitamins, detox programmes and other “alternative” (i.e. unproven) therapies. Needless to say these ideas have no support within mainstream scienceofautismscience. The recent booklet, The Good and Bad Science of Autism, provides a clear and accessible rebuttal in an excellent guide to the current state of our knowledge and understanding of autism

It speaks volumes that Wakefield is now dependent on media outlets like Age of Autism to get his message across. He is a marginal figure, reduced to touting proposals for a reality TV show, “The Autism Team” to US producers, as reported by Mark Hannaford in the Guardian. He still has nuisance value within the autism community. His acolytes continue to repeat the MMR hoax on blogs and other social media. But his days as a mainstream media figure are clearly over.  At least I thought they were until I picked up my copy of the i Paper today.

The article is neither a criticism of Wakefield for being the architect of the MMR scare behind the measles outbreak in South Wales nor a critique of the lies and distortions in his self-serving statement. It effectively gives him the right to reply.

  1. His picture and his words form the headline. The expert rebuttal comes a poor second.
  2. Although the print version of the i Paper concentrates on the single vaccine question, the Independent in print and online gives full coverage to his statement, which is printed in full. This statement repeats the lies that MMR is unsafe and causes autism. Incidentally, the Independent credits its source for Wakefield’s statement as healthimpactnews.com, a “news” site that was set up to promote the owners’ business, selling coconut based products as health foods. It also publishes their views on Darwin, prescription drugs, GM food and vaccines. They oppose them all while defending creationism or intelligent design and alternative medicines and therapies.
  3. Getting an expert to respond to Wakefield’s statements inevitably puts the expert on the defensive and makes him sound less convincing than Wakefield, who is never questioned on any of the dubious statements published without comment. It also gives a false air of legitimacy. This was always the problem in the original coverage of the MMR Hoax. By appearing balanced it gave equal weight to very unequal ideas. Outside of the medical fringe there has never been any support for Wakefield amongst doctors or researchers.
  4. There is an attempt to place Wakefield’s statement in context. But the message comes across that the question of single vaccines versus MMR is a legitimate topic for debate and that Wakefield, despite being struck off for malpractice in relation to research into MMR, has a legitimate voice in that debate.

Libel Reform Under Threat

 

Britain has some of the worst libel laws in the world. They are used to stifle legitimate comment and bully writers who are trying to expose the excesses of the rich and powerful. Simon Singh recounts how:

In 2005, the Saudi billionaire Sheikh Khalid bin Mahfouz sued the American author Rachel Ehrenfeld for publishing Funding Evil, which discussed how terrorism is funded. The case was held in London, because an international businessman such as Mahfouz can claim a reputation in almost any jurisdiction and the book was sold in this country; in fact, a grand total of 23 copies were sold in Britain.

Mahfouz was able to play high-stakes poker with Ehrenfeld and push a $1 million stack of chips on to the libel table. Ehrenfeld and her publishers could not afford such losses as it would have meant bankruptcy, so they backed down, settled early and paid £30,000 damages and £80,000 in costs.

Simon himself has suffered from the same law. He was sued when he accused the British ChiropractIc Association of promoting “bogus treatments” Two years later he finally won his case but then faced a battle to recover his legal costs of at least £100,000. Simon’s case attracted a lot of support. The appeal court judge expressed concern that legitimate matters for public and scientific debate should not be stifled by the law. One result is the Defamation Bill, an attempt to reform the libel law that is close to becoming law. But it is under threat. There is a bid to remove a clause that requires corporations to demonstrate proof of harm and not merely claim damage to their reputations when initiating libel cases. This is important. It raises the bar for rich individuals and institutions that use the threat of libel action to intimidate opponents who cannot match their deep pockets.

English PEN, which strives for freedom to read and freedom to write is part of the alliance promoting the bill. I reproduce their most recent statement below and urge readers in the UK to act to defend the integrity of the bill.

A new threat to libel reform – help us stop the corporate libel bullies libel-reform-campaign-pic

Four days before the Defamation Bill has its final and decisive debate in the House of Commons, we need your support to ensure that the libel reform campaign succeeds in reforming the law

Conservative MP and libel barrister Sir Edward Garnier is trying to remove a clause that would limit companies’ ability to use libel threats to intimidate critics into silence. The amendment was passed with an overwhelming majority in the House of Lords. The attempt to remove this clause will be voted on during debate on the Bill on Tuesday 16 April.

Companies can claim damage to their reputation, but never have to show that damage actually occurred.  The threat of costly legal battles with large corporations is what keeps many journalists, bloggers, scientists and human rights campaigners silent. The bullying of individuals by companies and silencing of whistleblowers has been one of the central concerns of our campaign, and a key area for reform.
Please write to your MP and tell them not to support Garnier’s amendment.

We’ve heard that the Conservatives might back Garnier on this, and that the Liberal Democrats will join their Conservative colleagues, even though restricting corporations from suing individuals unless they can prove harm was a commitment in the Liberal Democrat manifesto. Two parliamentary committees have also supported this reform. Please write to Nick Clegg and David Cameron and urge them to tell their parties not to support Edward Garnier’s amendment, and to make sure the clause on companies becomes part of the Defamation Bill.

Read our briefing for MPs on why this, along with a clear strong public interest defence, would do the most to lessen the damage the laws are inflicting on free and open debate. A Bill without either reform would be a wasted opportunity. Please point your MP towards our briefing at this link when you write to them.

We’ve seen the best of democracy in action – we have forced libel reform onto the political agenda and when politicians have listened to us, we’ve seen the best improvements to the Defamation Bill. Please tell your MP not to support Garnier’s amendment and tell David Cameron and Nick Clegg that the Government should not do so either.
With very best wishes,
The English PEN campaigns team

MMR and Autism

Measles graphicThe continuing outbreak of measles in South Wales has once more drawn attention to Andrew Wakefield, the man who did more than most to create a panic over MMR and autism. He was aided and abetted by scare stories in the media which presented Wakefield as a lone hero, battling against an establishment cover up on behalf of the children. Many of those now affected missed out on vaccines because of this scare. According to Dr Roland Napier, consultant epidemiologist for Public Health Wales, speaking to the Daily Telegraph

”There was a sustained campaign against MMR by the local evening paper [the South Wales Evening Post in the late Nineties] and my colleagues noted at the time that its circulation area had a proportionate fall in vaccinations compared to other regions in Wales. So there is a connection,”

This time round the media are united in condemning Wakefield while failing to acknowledge or apologize for their part in promoting the MMR Hoax. But if you look in the comments section of the online articles you will find a small but determined minority of people who still believe the lies and distortions so faithfully repeated by the media in the past. Andrew Wakefield himself has summarized these for us in a statement published on Age of Autism.

Blame the Government.

Wakefield’s argument then and now is that the government was to blame for withdrawing single vaccines and taking away choice after he raised doubts about MMR and recommended single vaccines. This ignores the fact that prior to MMR there had never been a single vaccine for mumps in the UK. Furthermore, replacing the two MMR doses with six separate doses one year apart would have left more children unprotected for longer, even assuming that vaccine take up did not suffer from six doctors visits instead of two. All the evidence suggests that uptake is lower for single doses and children often do not complete the course. And Wakefield has never addressed the question of how, if any component parts of the MMR vaccine are implicated in autism or bowel disease, giving them separately would mitigate that risk.

MMR is not safe

Two versions of MMR vaccine were withdrawn because the mumps component based on the Urabe strain carried a risk of developing aseptic meningitis. This was known before they were introduced but the rate of infection, 1 in 100,000 was much less than the natural rate of infection from mumps itself. They were only withdrawn in favour of vaccines using the Jeryl Lynn strain of mumps, which does not cause aseptic meningitis, when a more intensive study found a rate of 1 in 3000 for aseptic meningitis among children following MMR vaccination in Nottingham. Even then if the Jeryl Lynn strain had not been available, the health authorities would have continued with the vaccine because the rate of aseptic meningitis in actual mumps is around 1 in every 10 cases.

But Wakefield’s target has always been the measles component of MMR, not mumps or rubella. According to official statistics in the 20 years prior to the introduction of MMR there were 436 recorded deaths from measles in England and Wales. In 1988, the year MMR was introduced, there were 16 deaths. In the next twenty years there were 28 recorded deaths in England and Wales. Apart from death, there is the misery of the disease itself and the risk of side effects like convulsions (1 in 200:  MMR 1 in 1000), meningitis/encephalitis (1 in 5000: MMR 1 in 1000000 ), bleeding disorders (1 in 3000: MMR 1 in 100000). These figures reflect the safety of MMR based on 500 million doses given worldwide over a thirty year period.

MMR can cause autism

Wakefield bases this assertion on the decision by the US Vaccine Court to award damages to a small number of “children whose autism followed vaccine-induced brain damage. A recent government concession in the US Vaccine Court confirms that the parents’ claims were valid all along.”

He does not mention the Autism Omnibus Proceedings at the same court. A team of lawyers recruited thousands of parents who believed that vaccines had caused their child’s autism. They selected their strongest cases to present three general causation theories of autism resulting from either MMR, Thimerosal containing vaccines, or a combination of the two. Expert witnesses were summoned on both sides. Surprisingly Andrew Wakefield was not called as an expert by the petitioners. Every case was lost and the theories were dismissed. The successful individual petitioners mentioned by Wakefield have never argued that vaccines cause autism. That case was lost. They followed a different path. The vaccine court includes a list of table injuries that cover recognized side effects like encephalitis. You do not have to prove that the vaccine caused these injuries, only that they occurred within a specified timescale after the vaccine was administered. Some parents have persuaded the court that a) the injury occurred within the necessary timescale and b) their child is permanently disabled as a result. Hence the generous compensation payments.

But this does not prove that vaccines cause autism. According to Wikipedia

From 1988 until March 3, 2011, 5,636 claims relating to autism, and 8,119 non-autism claims, were made to the VICP. 2,620 of these claims, one autism-related, were compensated, with 4,463 non-autism and 814 autism claims dismissed; awards (including attorney’s fees) totaled over $2 billion. The VICP also applies to claims for injuries suffered before 1988; there were 4,264 of these claims of which 1,189 were compensated with awards totaling $903 million.[9]

Taking a prevalence figure for autism of 1 per cent in the general population we would expect a similar proportion among children winning claims for vaccine injury. So twenty or thirty individual cases of autistic children winning their claims would not be unusual. It is not evidence that vaccines cause autism any more than the “814 autism claims dismissed” are evidence vaccines do not cause autism. The evidence is in the science and we now have 15 years of accumulated evidence that does not support the vaccine autism hypothesis.

Wakefield ends by offering “to debate any serious challenger on MMR vaccine safety and the role of MMR in autism, live, in public, and televised.”  That is how politicians operate not scientists. Science proceeds via research, publication and academic discourse. In all these arenas Wakefield’s ideas have been tested and found wanting. Giving him the opportunity to grandstand on television may help to rally the faithful. It will add nothing to our understanding of vaccines or autism.

The Good and Bad Science of Autism

 

Here is a press release from Autism West Midlands, a charity that provides autism services and support in the UK. The book is available as a free download but I hope that once you have read it you will, like me, visit their shop to purchase a hard copy.

Autism West Midlands has published a pioneering book about autism research to be released on World Autism Awareness Day, 2nd April 2013. The Good and Bad Science of Autism is an easy-to-use book designed to introduce the reader to autism research.

Written by geneticist Dr. Neil Walsh and neuroscientist Dr. Elisabeth Hurley, the book brings together scientific research from multiple disciplines including neuroscience, genetics and psychology. It examines the validity of different areas of autism research and helps the reader to draw conclusions about the current scientific knowledge of autism.

The book begins by providing a basic introduction to scientific method: how scientific studies should be undertaken and published. It then goes on to cover good autism science research before exploring how bad science has affected autism research and how the age of the internet has affected the public understanding of autism.

This book discusses topics such as autism and the MMR vaccine, the search for tests to diagnose autism and some of the interventions available for people with autism. The book gives readers guidance on how to differentiate between good and bad science and how to interpret recent autism research findings.

This exciting book is designed to be easily accessible. Thanks to its colour-coded pages, readers can choose to read either a summary of the chapter or the full text. There are also pages focusing on particular aspects of autism research.

Finally, the book provides a list of useful resources that readers can access to find out more about autism science research.

Dr. Elisabeth Hurley, co-author of the book said “The Good and Bad Science of Autism is an easy-to-read book that we hope will introduce autism research and the science behind it to a wider audience.”

Jonathan Shephard, Chief Executive of Autism West Midlands said “Autism has multiple causes and complex effects. Understanding autism is therefore not an easy task in a world where people look for simple, immediate answers. The Good and Bad Science of Autism meets the need for an easy to follow path through the fascinating and developing strands of autism research. There are no simple answers in autism, but the book provides a clear explanation of current autism knowledge.”

There is nothing new in this booklet. But it provides a concise and accessible summary of the limits of our current knowledge as well as a guide to understanding scientific research for the lay reader. It is very good at defending research from bad science reporting but misses a trick by failing to point out that the misreporting of research often arises, not from a misreading of the research, but from the sensationalism of the press releases that are issued by the research institutions themselves.

The chapters on bad science and alternative therapies would have been more useful if the authors had named names. Perhaps the UK’s litigant friendly libel laws persuaded them to exercise due caution. They do reference Ben Goldacre’s Bad Science and Paul Offit’s book, Autism’s False Prophets, which does name names, and they acknowledge the journalistic achievements of Brian Deer in relation to MMR. But I was surprised that there was no mention of Mike Fitzpatrick who has authored two excellent books, MMR and Autism What Parents Need to Know and Defeating Autism, a Damaging Delusion on alternative therapies. Their discussion of alternative therapies also omitted some of the more pernicious ones, hopefully because they have yet to gain traction in the UK. So no mention of Lupron, DIY stem cell therapy, bleach enemas or faecal transplants.

The authors are on stronger ground when explaining their own specialities’ contribution to autism research. The chapters on genetics and neurology are so straightforward that even I understood them. The comprehensive references (that are a feature of every chapter) point the reader to some of the most influential research in each area for those who feel emboldened to expand their knowledge and expertize.

The booklet ends with a list of resources including blogs which the authors recommend as often providing more reliable reporting on autism research than the mainstream media. I was delighted to see LBRB, Science Blogs and Neurologica all recommended. I would add Science Based Medicine and Neurodiversity to that list. Now I have to check out the other two blogs they recommend, Cracking the Enigma and BishopBlog.

Like many parents, I started out on my journey through autism with an open mind to the many alternative theories out there and a tendency to close my mind to the official line that reeked of establishment cover up and complacency. Sixteen years later I have learned to distinguish the political establishment  that often does fail to deliver and always tries to cover its back, from the scientific world that does have a track record of serious research and owning up to its mistakes. I would have learned this a lot sooner with a booklet like this to guide me.

World Autism Awareness Day

Logo of World Autism Awareness Day, figures holding hands around a globe

World Autism Awareness Day is marked on Tuesday April 2. It was established in 2007 by United Nations Resolution 62/139.

According to Autism Speaks:

This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

Raising awareness is fine and the National Autistic Society has a full programme on the day including a live webchat with Chief Executive, Mark Lever and a special Autism supplement in the Independent newspaper. The NAS also points out that raising awareness matters because

a lot of myths still surround the condition. These misconceptions can have a damaging effect on the lives of people living with autism, making it more difficult to have their condition recognised and to access the support they need.

One of those myths, perpetuated by narratives like the one above from Autism Speaks and the wording of the UN Resolution is that autism is primarily a problem of childhood. Early diagnosis and early intervention are indeed often associated with positive outcomes. But what about adults? If you missed out on the early stuff does that mean it is too late for you? Autism Speaks has another narrative for that.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

The key words here are growing global health crisis and autism epidemic. The recorded prevalence for autism has grown dramatically in the last twenty years. The generally accepted figure today is 1 in 100 or 100 in 10000. I take this as a vindication of the pioneering work of Wing and Gould(1979) in establishing a prevalence of approximately 20 in 10000 for autism and related conditions in a special school population in Camberwell, Middlesex in the early 1970s together with the work of Ehlers and Gillberg (1993), who established a prevalence of approximately 70 in 10000 for Aspergers and related conditions in mainstream education in Gothenburg. These studies are referenced in a discussion document on prevalence on the NAS website. Probably the best explanation of the growth in numbers is the redefinition of autism as a broad spectrum condition affecting individuals of all levels of cognitive functioning instead of a narrowly defined disorder. Pressure from parents and, latterly, self advocacy by autistic adults has also helped to push autism up the agenda and modern epidemiological studies using the latest diagnostic criteria have revised the figures upwards from the 5 in 10000 of the early studies in the 1960s.

Autism Speaks, along with a number of parent advocacy groups, primarily in the United States but with representatives in many countries around the world, argues that the growth in numbers cannot be explained by increased awareness, improved methods of ascertainment and the broadening of diagnostic criteria. Instead we are presented with the narrative of an epidemic. And as twenty years is too brief a time-span for a genetic epidemic there must be an environmental cause. Or causes. At one time vaccines were in the dock. In the UK MMR was identified in studies that were at best inept and at worst fraudulent. In the USA thimerosal was indicted. The evidence for these claims has been  refuted yet again but campaigners insist that there must be something or some things, in vaccines, in the atmosphere, in food or household chemicals or maybe an unspecified combination of them all contributing to the so-called epidemic.

This is bad for three reasons. Firstly, quack doctors continue to prey on parents and persuade them to subject their children to costly and potentially harmful treatments that have no basis in science.  Secondly, the rhetoric of the epidemic has created a fear of a coming deluge of severely disabled autistic adults who will swamp health and care services. These fears have been fuelled by coverage of a recent survey purporting to show that one in fifty children in the USA are autistic. Emily Willingham makes the important point in her discussion of this story that much of the increase is in teenage children, predominantly boys, in mainstream schools.  They are emerging as autistic now, not because of environmental toxins, but because factors now at work in their social environment make their autism more obvious. If you are a reasonably intelligent autistic child you can learn to get by unnoticed by imitating your peers and learning the rules. Then all the rules change in adolescence. No one tells you they have changed and you are busted. Plus you are changing as well. Teenage years are difficult for everyone. Imagine trying to navigate your way through adolescence with the added impairment in social understanding that features in autism.

But most autistic teens do get through it and can become contributing members of adult society if society is prepared to make the necessary adjustments and accommodations to meet their needs. This is  happening in the world of physical disability with technical advances in the design of wheelchairs and other prosthetic devices alongside a social revolution in attitudes and a willingness to spend money on lifts, ramps and other means to make our public spaces and workplaces accessible to all.

But there is a third and potentially more damaging consequence of rhetoric like that employed by Autism Speaks. If autism is presented as a new and growing threat, the many autistic adults who already exist and are struggling with needs that are unrecognized and unmet will, in the words of a previous NAS campaign, continue to be ignored or ineligible. While research funds concentrate on finding causes and cures in order to head off a tragedy fabricated out of fear and uncertainty,  the certain tragedy of adult lives mired not because they are different but because we are indifferent will continue.

In my private life as the parent of an adult autistic son, in my professional life as a teacher in special education and in my public life with the National Autistic Society I am well aware that autism does bring enormous problems. But these are compounded by misinformation, misunderstanding and the missing resources that could make all our lives so much easier. If Autism Speaks really wants World Autism Awareness Day to be an occasion to celebrate the unique talents and skills of persons with autism and [be] a day when individuals with autism are warmly welcomed and embraced in community  they should spend less time scaremongering about autism and pay more attention to what autistic people and their allies are saying. Autism Listens perhaps?

Adam Lanza: scapegoating is not the answer

My thanks to Michael Baron for this PRESS RELEASE from Autism-Europe.

18 December 2012
Caution over linking autism with school massacre in United States

Numerous media reports have claimed that, Adam Lanza, the young man who killed 20 children 6 adults at an elementary school in the United States on Friday, had Asperger syndrome.

While claims that Lanza had Asperger syndrome (an autism spectrum disorder) remain unverified at this point in time, Autism-Europe urges the wider community to be cautious about making links between autism and violent crime.

On this tragically sad occasion, Autism-Europe’s Director, Aurélie Baranger, expresses “our deepest sympathies for the victims of the massacre at Sandhook Elementary School, their families and the community of Newtown, Connecticut”.

Ms Baranger explains that, “We should understand this tragedy as the act of an individual, not typical of a person with autism.”

“We urge the international community, including journalists and other individuals, to avoid making incorrect assumptions or judgements about people with autism,” she continues.

“As with the rest of society, the vast majority of people who have autism are law-abiding citizens.”

“People with autism throughout Europe, the United States and the rest of the world, already face many barriers and much discrimination. Additional negative stereotyping in the media only leads to further stigmatisation and difficulties for people who have autism.”

“When writing media reports, we urge journalists in particular to take appropriate care to avoid further stigmatising people who have autism,” she continues.

Autism affects around 1 in 150 people in Europe. It is a lifelong disability that affects the development and functioning of the brain. People who have autism experience difficulty with communication, social interaction and often display restricted interests and repetitive behaviours. Autism is a spectrum disorder, which means that the symptoms vary between individuals, ranging from mild to severe.

For more information about autism, please visit: www.autismeurope.org

For more information, and or interviews, please do not hesitate to contact

Aurelie Baranger, Director of Autism-Europe:

Tel: +32 (0)477 70 59 34

Email: aurelie.baranger@autism-europe.org

The media has generally has acquitted itself well in covering the school massacre in Newtown, Connecticut, except in one respect. Faced with the inexplicable horror of a massacre of young children, an explanation has been sought by trying to typecast the perpetrator.

From all accounts it is reasonable to assume that Adam Lanza was shy, intelligent, vulnerable, socially isolated, a “nerd” in common parlance. But it is unreasonable to label him a “Nerd Killer” as one UK tabloid did. Language is important. Calling him a “Child Killer” would have left no doubt about what he did. “Nerd Killer” is a statement about who he was. It suggests that going on a killing spree is a nerd characteristic.The grammatically correct “nerdy killer” is less strong. It does not make nerds seem threatening or dangerous. Instead it suggests that this was an uncharacteristic act.

Similarly, the references to Lanza’s interest in computer games, violent of course, are supposed to mark him out as a potential mass murderer. But a month ago the media were all over the launch of Black Ops II with pictures of happy smiling fans some of whom had obsessively queued for days. Others were in fancy dress as blood smeared zombies. All good fun and generating millions of sales but apparently not millions of deranged killers.

Back to autism, and Lanza certainly looks a good fit for a diagnosis. This has yet to be confirmed. Actually most of the “facts” about Lanza have turned out to be false according to the Guardian. If it turns out to be true does it matter? Not very much. In my opinion, if he had survived to stand trial it should have had no bearing on his guilt and no bearing on his sentence. But it should have been taken into account to ensure that his condition did not disadvantage him in exercising his legal right to a fair trial. And it should have been a mitigating factor in deciding the appropriate custodial regime for such a vulnerable adult. That and no more.

It has even been suggested that Lanza was a Goth. Never mind that he is as unlike a Goth as it is possible to be, Goths, like nerds, obsessive computer gamers and autistic people are more likely to be the victims rather than the perpetrators of violence.

In there eagerness to explain the inexplicable sections of the media have focused on identifiable sub cultures and categories of people in society. see for example the lurid profile of Lanza in the Sun. None of this helps to explain why Adam Lanza acted the way he did. But it does increase the likelihood of bullying and violence against these disparate elements in society. This irresponsible behaviour may inadvertently add to the list of Lanza’s victims.

So why did he do it? I do not know. But I predict that if there is an answer it will emerge from a complex analysis of the circumstances of his life and not from simplistic profiling by  journalists that puts others at risk of retaliatory hate crimes.

A comprehensive list of autism related blogs and responses is available here:

http://lizditz.typepad.com/i_speak_of_dreams/2012/12/gun-violence-and-the-search-for-a-scapegoat-autism-edition.html

Creating a Co-Mmotion

Another of my projects last year was a collaboration with Co-Mmotion. This has grown out of “Your Move,” an initiative of Barrow Borough Sports council to provide dance workshops for children with disabilities during school holidays. The providers were Alan Fitzgerald and Tids Pickard, aka Fitz and Tids, a gifted musician and dancer who have track record in working with pupils and staff in Cumbria’s special education sector.

George Hastwell School, where I work has long enjoyed a fruitful partnership with Fitz. We began humbly enough with drumming workshops and progressed over the years to the creation of an opera performed to a
local audience on the stage of Barrow Sixth Form College. Fitz has also assisted with a collaborative effort involving a number of schools that used music and dance to tell the story of the Slave Trade and was performed in Kendal.

With Co-Mmotion they are less concerned with enabling young people to create and perform finished pieces, although this is not ruled out. Instead they provide workshops for autistic children to participate in music and dance with the opportunity for personal creativity and collaboration. These also run in the school holidays and have been funded by Northern Rock and supported by the local branch of the National Autistic Society.

Northern Rock have also funded a pilot study at George Hastwell School to test whether music and dance brings lasting benefits apart from the obvious enjoyment displayed by those who have taken part in Co-Mmotion activities. Now I need to write up a proposal that will attract researchers and funders for a follow up project. Any advice from the Autism community will be most welcome. Here is my initial report.

Introduction
Autism is currently diagnosed on the basis of observable behaviours that are taken as evidence for a triad of impairments in
1. Social understanding
2. Social uses of language
3. Social uses of imagination
The key word here is “social.” Intellectual understanding may be normal or even outstanding. Some autistic people do have additional cognitive impairments. Others like Temple Grandin have PhDs. The reasons for what one expert described as a “fundamental impairment of social cognition” are still under investigation. Are there basic psychological drives that are impaired? Are there complex genetic markers for different aspects of the triad that need to come together for a full expression of the syndrome. Are they present in partial form in parents and siblings who display a broader autistic phenotype, sometimes referred to as “shadow syndrome,” in which some or all of the features of the triad may be present but do not cause significant impairment?
Some autistic people have argued persuasively from the standpoint of neurodiversity that they are not impaired at all but have a neurological difference that need not necessarily be disabling if society were to show sufficient understanding and make adjustments to accommodate their needs. These ideas have been taken up by academics such as Morton Gernsbacher who examined research papers in which autistic strengths were either ignored or taken as evidence of impairment. Mottron, Dawson et al. examined cognitive performance and found that autistic people who performed badly on traditional tests of cognitive functioning performed better using scales that placed less reliance on verbal ability.
It is commonly accepted that functional outcomes for autistic people (like independent living, job prospects etc.) are positively related to cognitive functioning and verbal ability. This has led to a distinction between high functioning and low functioning autism. Amanda Baggs is one autistic person who confounds this distinction. She finds verbal communication difficult but writes and speaks via computer technology. She requires high levels of personal care but has made a video about her life which was so successful on YouTube that it led to an invitation to collaborate with researchers at MIT.
This lack of clarity about the true nature of autism and its underlying causes has led to a plethora of interventions, therapies and cures. Even those that are widely used and generally thought to be effective have very little research evidence. The most successful like Early Intensive Behavioural Intervention do have an evidence base because they specify targets that are easy to measure – more eye contact, less self injurious behaviour etc. But the qualitative claims for interventions like play therapy and music therapy are much harder to establish.

 

The Project

It is against this background that the Co-Mmotion project is trying to secure an evidence base for its work with autistic children. The idea is that the language difficulties that have been documented in autism may significantly affect social interaction in a way that parallels Mottron and Dawson’s findings about the impact that verbal demands can have on cognitive performance. If verbal language ability is subordinated to other modes of communication such as music, movement and dance will autistic children show greater levels of social skills and empathy in therapy sessions? And, the key question for any intervention, will those skills cross over from the therapy sessions and be used in everyday life?
To see whether such a project is feasible Co-Mmotion has been working with a group of children at George Hastwell School. The pupils, aged between 11 and 14, all have severe learning difficulties. One, the only girl in the group, is non-verbal and severely autistic. There are six boys with an autism diagnosis, two more who are borderline and one with ADHD.
The initial sessions were held in school. Fitz played music while Tids moved around the space. Staff observed to see which pupils engaged in activities. Where they attracted to the instruments or to the movement? Would they observe, copy or respond in other ways. Would they initiate things for themselves?
We experimented with groupings. If we started with those pupils who were least active in the group and persuaded them to participate with Fitz and Tids what would happen when the rest of the group came to join in? If somebody responded well on their own but reacted badly when the group joined we offered them personal time at the end as an incentive to stay with us during the group activities.
Equipment was used to facilitate movement in space, adding up and down, under and over, in and out etc. Pupils were encouraged to move equipment around to create the space.
While a few pupils were able to respond spontaneously and achieve very high levels of interaction with Fitz and Tids, most pupils benefited from added structure – coming together to talk and create games and then apply the rules wordlessly using music and movement.
Activities included follow the leader, mirroring, not touching the ground, finding places to hide, freezing into statues, leading and being led by a partner. Changes in the music or the music stopping acted as a cue. Sometimes pupils controlled the music, sometimes they worked with Fitz. Eye contact, facial expression, gesture and touch were needed to negotiate paired activities and to resolve potential conflicts such as two people moving towards the same space or meeting on a balance beam. Who should give way? Sometimes everybody was invited into a collaborative effort to build a living sculpture or work as a team to cross the hall using a set of rules.
Assessment
We began with an elaborate checklist which was soon abandoned. The problem was that it called for observers to make a series of judgements about the quality of the interaction while trying to quantify them at the same time.
Then we used a simple measure of engagement. Each level was ticked whenever we saw evidence in a session.
1. Present
2. Observing
3. Participating
4. Copying
5. Responding
6. Initiating
This worked well enough to record changes over sessions, eg recording that a pupil was always present by the final session and usually observed the others. It did not capture the dynamics of individual sessions to show how a pupil moved up and down between the six levels over time or which activities were most successful.
To get round this we also used video to record parts of sessions. This sometimes missed important interactions that were happening off camera so we also used a diary to record significant events. This combination of charts, videos and a contemporaneous record did capture the sessions but was very labour intensive.
Second Sessions
We were interested in taking pupils to a neutral space and comparing responses. Sessions at the Forum were marked by a greater initial structure. Fitz and Tids set the agenda and guided pupils through the activities. However whenever pupils took ownership of a game or activity Fitz and Tids stepped back and responded to the pupils’ initiatives. It was also noticeable that pupils formed coherent teams that developed mutual understanding which carried over from one session to another, providing continuity and a common background from which some pupils were able to initiate and develop new forms of interaction.
Conclusion
My intuition is that the project has been beneficial to all involved and should continue. Our greatest challenge has not been to involve the pupils in non-verbal social interaction but to capture that involvement both qualitatively and quantitatively and to provide a data set that can inform future projects.

I suggest

  •  The involvement of academic researchers who can
  • Assist with a literature survey to provide a more rigorous theoretical basis for the work.
  • Provide more rigorous methods of quantifying progress and performing statistical analysis of the data.
  • Train observers in the methods of collecting data.
  •  Professional video of sessions that can be analysed to add to the data sets.
  • A smaller group of pupils with an ASD diagnosis and no confounding factors like ADHD.
  • Agreed aims that are measurable against baseline assessment of pupils.
  • A neutral space like the Forum where environmental variables can be controlled.
  • A commitment to maintaining the positive qualities of the work where all the pupils are happy to be involved and the intangible benefits they enjoy are not compromised by the requirement to follow the programme.
  • Mike Stanton
    George Hastwell School
    24 May 2012

     

    PHILOSOPHY FOR CHILDREN

    It has been many months since my last blog post. This is in part because this has been a busy time for me and I have been involved in some interesting projects. This is one of them.

    THE PROJECT

    I teach a class of children with severe learning difficulties aged 11 to 14. Last year we took part in a project to deliver Philosophy for Children (P4C) to these children. The project was delivered by Gina Mullarkey of Cumbria Development Education Centre (CDEC), who displayed both enthusiasm and creativity in making the topic accessible to my pupils. Some staff had the benefit of P4C training prior to the project. The children did not. But it soon became clear that the children were more open to the ideas than some of those staff who had not received training and were equally new to the concept. The opening sessions were about establishing baselines for pupil knowledge and perceptions, (in this case we chose Africa) in order to challenge those perceptions and gauge how well the children were able to respond to these challenges, to think for themselves and maybe change their ideas. This process was more important than any learning outcomes measured against fact based criteria of true or false.

    The children took part with great enthusiasm. The task was open ended. There were no right or wrong answers, only interesting ones. We were asking children to demonstrate what they thought in order to ask them, “Why do you think that?” and not to tell them they were wrong. The staff, or at least a significant number of them, were uncomfortable with this at first. Their usual role is to assist children to succeed, which usually means, “Getting it right,” or “Doing it well.” They tried to do this, valiantly attempting to persuade children to adopt the right answers. But there were no right answers and it was instructive to watch children listening when staff disagreed with each other.

    Education is largely driven by measurable outcomes that tick boxes: knowledge gained, skills acquired. But the third element in the pedagogy of the National Curriculum, “understanding,” is less easily measured and defined. This is where P4C comes in. Can children use their knowledge and their skills to make informed choices? Can they generalize their learning in order to apply it to novel situations? Can they be persuaded to change their minds and not just change their answers in order to please their teacher?

    Children are very good at working out what we want even if it makes no sense to them. Here I am reminded of an experience many years ago. I was a student on teaching practice. One of our assignments was to assess conservation of number by presenting primary age children with a line of objects. Then we would alter the spacing and ask the pupil if there were more or less or the same number. Children who had not yet acquired the concept of conservation of number would answer, “More,” or “Less,” depending on the spacing. One of the more able children got the test right. But then I heard him say to the next child in line, “We know that there’s more when he moves them. But tell him they are the same. That’s what he wants.”

    One advantage of working with children with learning difficulties, especially those on the autistic spectrum, (who make up at least a third of my pupils) is that they are less skilled in divining our expectations and less inclined to meet them anyway. But it does not follow that they are less capable of independent thought. They are by no means more capable either. They just are more likely to tell us exactly what they are thinking rather than what they think we want them to say.

    I must say that staff became more adept at facilitating the process rather than influencing the outcome as time went on. I would love to continue with P4C in the future with the following proviso. As well as challenging children’ ideas and encouraging them to think, we, the staff, should enter more fully into the process and be prepared to expose our ideas to challenge and give children the opportunity to change the way we think.

    THE PROJECT IN CONTEXT

    P4C will achieve little if it is treated as a discrete project rather than an attempt to change the way we expect our children to work across the curriculum. Of course the rules for spelling or arithmetical facts are not up for debate in the same way that concepts of fairness and justice are. But even here we can make some changes to positive effect.
    I used to teach rules for spelling and then teach the tricky words that broke the rules. One pupil, who happened to be autistic, was deeply distressed. Words that broke the rules! How could that be? Now I teach that there are different rules for different words and there are different rules because our language is a mix of different languages, each with their own rules for spelling. Sometimes they even have different alphabets. Children learn that the rules are contingent upon the historical circumstances in which they arose, although I do not use those exact words when I teach them.

    How is this related to P4C? Children are introduced to morality via rules. Young children accept rules and apply them rigidly. What happens when rules collide or contradict each other? Honesty is the best policy. So should you betray your friends by always telling the truth? What if you are captured by the enemy during wartime? Do you lie to your captors? (A particularly apt analogy for my war obsessed teenage boys.)

    So P4C has encouraged me to always explain rather than just tell, even when imparting apparently value free information about spelling. The children on the P4C course now routinely challenge me with philosophical questions and I always take time to explore the answer with them.

    I am delivering a presentation on evolution. “Please, sir. Do animals think?” “What happens when you die?” “Will we be extinct one day?”

    We are learning about Greek myths. They ask, “How do we know if stories are true?” “That’s silly. Why did the Greeks believe that?”

    We are comparing beliefs in religious education. They ask, “Does every religion have a different god?” “How do we know which one is true?” And then a child says there is no God and I talk about my atheism in a way that still respects the faith of believers.

    These are conversations with children who have severe cognitive and developmental delays. Fantastic!

    THE PROJECT IN ACTION

    Thus the children are doing P4C. What about me? I have not tried to carry on with sessions like those that Gina from CDEC delivered during the project. I did not want P4C to become another subject on the timetable. Rather, I have sought ways to use it across the curriculum. Story time has lent itself to this in a big way.

    Like P4C, story time gathers the children together in a circle. Last year we gathered beneath a P4C wall display which celebrated the activities with photos of the children taking part, their written and drawn responses and some of the key points made by Gina. Sometimes the display functioned as an aide memoire. Who is talking? Who is listening? How do we take turns? More often it signified that we were in the thinking corner and encouraged a philosophical approach to the activity.

    This was especially the case with a collection of stories, “The Story Giant.” by Brian Patten. The narrative link was that the story giant was the custodian of all the stories in the world but now he was dying because there was one story that still eluded him. And if he dies all the stories in the world die with him. He gathers together 4 children from very different backgrounds from around the world, summoning them from their dreams. In the course of the book each child understands more about themselves and about their companions. They come to terms with their own internal conflicts and, thus strengthened, overcome their differences in order to unite in an attempt to discover the missing story and save the giant. Read the book to learn if they succeed.

    This book totally gripped my children. It is structured around the narrative device of each child and the giant telling a series of stories. Dramatic tension comes from the physical decay of the giant’s castle as it crumbles around them and the growing weakness of the giant himself as he nears death. Meanwhile the stories themselves, many of them traditional folk tales, provoke ambiguous and sometimes contradictory responses from their audience. Perfect for P4C! And perfect for my children too.

    After every chapter we engaged in discussions that would not have been out of place in Gina’s P4C sessions. Sometimes discussions were passionate. I would point to the wall behind me and remind them of the rules we had agreed. These rules were enabling rather than restrictive. As I wrote in an earlier piece of feedback on P4C and Autism:

    The beauty of these rules was that they were not intended to restrict pupils. Instead the rules enabled them to work together and make discoveries about themselves, their friends and the world around them.

    This is the essence of P4C: rules that help you choose; not rules that take away choice. This is a perfect fit for my own philosophy of education. P4C is P4Me.