Author Archives: Mike

Corbyn’s critics plumb new depths

On Sunday Nick Cohen wrote a column in the Observer: Extremism thrives because of cowardly collaborators.  It was fairly run of the mill. Republican politicians who pride themselves on their desire to emulate Churchill and compare Obama’s rapprochement with Cuba to Chamberlain’s appeasement of Hitler are showing cowardice and hypocrisy by refusing to condemn Donald Trump whom Cohen describes in these terms:

I don’t throw the word “fascism” around, but can we at least accept that Trump follows the Führerprinzip? He has no colleagues, only followers. He is a racist. Not a closet racist, or a dog-whistle racist, but a racist so unabashed that the Klan endorses him. Above all, he has the swaggering dictator’s determination to bawl opponents into silence with screams of “loser”, “dummy”, “fraud”, “puppet,” “biased”, “disgusting”, “liar” and “kook”.

Cohen believes that Trump is unfit to hold office and that any Republican worth his or her salt should come out and say so. But most are staying silent or openly endorsing him, either out of fear or self-interest. This is unremarkable stuff. Many American commentators are making similar points, going so far as to say that Trump is destroying the GOP. This might be expected from The Washington Post but a former speechwriter for President George W. Bush is saying the same thing.

Now, I imagine the last person most people would compare to Trump is Jeremy Corbyn. Yet Cohen does just that in his final paragraphs.

Compare them to the British Labour MPs fighting Jeremy Corbyn. They are everything that conservatives despise: hand-wringingly PC, eco-conscious, emotionally literate, bleeding-heart do-gooders every last one of them. Christ, some of them may even read the Observer. But after the killing of Jo Cox by an alleged rightwing extremist, Angela Eagle, Jess Phillips and all the other anti-Corbyn MPs who are speaking out know that the death and rape threats from left-wing extremists may not just be bluster.

They are showing true courage. Not just moral courage but physical courage. A courage that those American conservatives, who are so loud in the determination to fight the threats of the past, and so silent before the dangers of the present, entirely lack.

By extolling the courage of Labour MPs who stand up to Corbyn and denigrating the cowardice in the GOP is Cohen implying that Corbyn is no better than Trump? And having already compared Trump to Hitler is he suggesting a similar parallel with Corbyn? Perhaps he is harking back to the furore about alleged anti-Semitism in Labour’s ranks and laying that at Corbyn’s door.

And note the not so subtle reference to the “alleged” right wing extremist who murdered Jo Cox that is set against the unequivocal “left-wing extremists” who are blamed for the anonymous online abuse being aimed at Corbyn’s opponents. You can almost hear the subtext.

“They say he was rightwing but just you wait until the left-wing extremists start making good their threats of violence. He may turn out to be not so rightwing after all.”

I happen to agree with Cohen about the craven hypocrisy of Republican politicians. But conflating that with the death of Jo Cox to imply that Labour MPs are more at risk of violence than their American counterparts in the GOP is taking the campaign against Corbyn to new depths. And it is not true. Apart from the IRA bombing campaign against Britain very few UK politicians have been the subject of political violence. By comparison, thirty-four US politicians and senior officials have been assassinated since 1825, including four Presidents of the United States. The most recent was a federal judge, John Rolls in 2011. Sixteen have been killed since the assassination of JFK in 1963. Following his assassination seven US presidents have been the subject of assassination attempts including Barack Obama. The plot to kill him was thwarted at the planning stage in 2008. You can read the full list here.

But in Cohen’s book the Left are all potential murderers and rapists unless proven otherwise. When allegations are raised about conduct within our ranks we are expected to condemn them out of hand whether they are true or not. Remember Angela eagle’s constituency office window that was never broken?

Perhaps he should reread his column, particularly the part where he says,

Latinos have to explain why they are not rapists and murderers or shut up and give up. Muslims have to explain that they are not terrorists or they lose the right to a hearing. At every stage, the argument is shifted on to the troll’s terrain of ethnic and religious loyalty tests. Except here the troll could become the world’s most powerful man.

We know how they feel. Except that here the troll writes a weekly column for the Observer.

Will Theresa May keep her promise to deliver “A Better Britain?”

ThTheresa Mayere has been a lot of talk about Theresa May occupying the centre ground and even threatening to undercut Labour with a speech that would not have sounded out of place at a Jeremy Corbyn rally. But before we get carried away, we would do well to compare her words with those of previous Conservative Prime Ministers on first coming to power. Then compare and contrast those words with their record in office.

Theresa May July 15th 2016

‘That means fighting against the burning injustice that if you’re born poor you will die on average nine years earlier than others. ‘If you’re black you are treated more harshly by the criminal justice system than if you’re white. If you’re a white working class boy you’re less likely than anybody else in Britain to go to university. ‘If you’re at a state school you’re less likely to reach the top professions than if you’re educated privately. If you’re a woman you will earn less than a man. ‘If you suffer from mental health problems, there’s not enough help to hand. If you’re young you will find it harder than ever before to own your own home.’ She added: ‘But the mission to make Britain a country that works for everyone means more than fighting these injustices. ‘If you’re from an ordinary working class family, life is much harder than many people in Westminster realise.’

Margaret Thatcher May 4th 1979

“And I would just like to remember some words of St. Francis of Assisi which I think are really just particularly apt at the moment. ‘Where there is discord, may we bring harmony. Where there is error, may we bring truth. Where there is doubt, may we bring faith. And where there is despair, may we bring hope.’”

John Major December 4th 1990

“Amidst the inevitable competitive thrust of life, it should be a compassionate society. Genuinely compassionate – because some people do need a special helping hand to help them enjoy a full life of choice and independence. And we should never forget that small changes in the lives of private people are every bit as important to them as dramatic changes in the lives of public people. And a classless society: not in the grey sense of drab uniformity – but in the sense that we remove the artificial barriers to choice and achievement.”

David Cameron May 11th 2010

One of the tasks that we clearly have is to rebuild trust in our political system. Yes that’s about cleaning up expenses, yes that is about reforming parliament, and yes it is about making sure people are in control – and that the politicians are always their servant and never their masters.

But I believe it is also something else. It is about being honest about what government can achieve. Real change is not what government can do on its own – real change is when everyone pulls together, comes together, works together, where we all exercise our responsibilities to ourselves, to our families, to our communities and to others.

And I want to help try and build a more responsible society here in Britain. One where we don’t just ask what are my entitlements, but what are my responsibilities. One where we don’t ask what am I just owed, but more what can I give. And a guide for that society – that those that can should, and those who can’t we will always help. I want to make sure that my government always looks after the elderly, the frail the poorest in our country. We must take everyone through with us on some of the difficult decisions we have ahead. Above all it will be a government that is built on some clear values. Values of freedom, values of fairness, and values of responsibility.

I want us to build an economy that rewards work. I want us to build a society with stronger families and stronger communities. And I want a political system that people can trust and look up to once again.

 

 

 

Cameron Blew it Over Brexit. So Lets Blame Corbyn

One narrative that is emerging to explain the outcome of the EU Referendum hinges on the claim that the Labour Party did not deliver the vote in its traditional northern heartlands. Or rather, Corbyn did not deliver because his brand of metropolitan socialism did not resonate with the concerns of traditional, socially conservative labour voters, in particular around the impact of largescale immigration from the EU on their communities.

And younger city dwellers who are fast becoming the natural demographic for Corbyn supporters are alleged to have failed to vote in sufficient numbers. According to a tweet by Sky Data that quickly gained acceptance on social media only 36% of 18 – 24 year olds voted.  Writing in The New Statesman, Barbara Speed was not convinced.

Sky isn’t claiming this is collected data – it’s projected, and a subsequent tweet said it was based on “9+/10 certainty to vote, usually/always votes, voted/ineligible at GE2015”. I’ve asked for more information on what this means, but for now it’s enough to say it’s nothing more than a guess.

On Sunday the Observer provided some more reliable data from Opinium, the polling agency that came closest to predicting the outcome of the EU Referendum.

OPINIUM Poll published on June 22nd

graphgraph 1

According to the Observer, Opinium pollsters, working for the LSE after the referendum

found turnout among young people to be far higher than data has so far suggested. “Young people cared and voted in very large numbers. We found turnout was very close to the national average, and much higher than in general and local elections.

“After correcting for over-reporting [people always say they vote more than they do], we found that the likely turnout of 18- to 24-year-olds was 70% – just 2.5% below the national average – and 67% for 25- to 29-year-olds.

The original Opinium poll published on the eve of the referendum also demonstrated the extent of the split in the Labour and Conservative parties. And the split was more pronounced for the Tories.

graph 2

The figures suggest that the Labour vote for Remain held even in the North, where their core vote was already under pressure from UKIP. This is borne out by post a Referendum poll by Lord Ashcroft.

Remain % Leave %
Conservative 42 58
Labour 63 37
Lib Dem 70 30
UKIP 4 96
Green 75 25
SNP 64 36

Source: Ashcroft polls Get the data

TO SUM UP

The Tories, not Labour promised a referendum on Europe.

The Tories, not Labour negotiated the new terms to keep Britain the EU.

The majority of Tory voters voted to leave.

The majority of Labour voters voted to remain.

But it is Labour, not the Tories who are to blame because they did not deliver a big enough vote for Remain. The Parliamentary Labour Party have accepted this and decided that they are going to blame Jeremy Corbyn. That is the justification for their leadership coup. There may be good political reasons to question Jeremy Corbyn’s leadership. But the Referendum Campaign is not one of them.

Brexit? Blame it on Corbyn!

_89974521_mps_declare_eu_stance_14_06_16_624gr

I am very angry with David Cameron. If the Remain camp is right and Brexit would be an unmitigated disaster for the UK why is he risking all our futures with this referendum? The only reason I can find is that he has put his party first and his country second. Last year with a general election approaching, the euro-sceptic wing of the Conservative Party was threatening to defect to UKIP in large numbers. Cameron did not believe he could win the election and so  made a manifesto pledge to renegotiate the terms of UK membership of the EU and hold a referendum if the Conservatives formed the next government. He never expected he would have to deliver on this promise but he calculated that it would serve to keep the Conservative Party together. So when he won the election what was he supposed to do?

  1. Break the election pledge on the grounds that he would not lead this country into the abyss, and carry on as Prime Minister?
  2. Break the election pledge on the grounds that he would not lead this country into the abyss, and resign as Prime Minister?
  3. Engage in a cosmetic “renegotiation” with our EU partners (Help me out here, guys!) and proclaim a great victory that fools nobody?

Cameron chose the third option and the result has been a Blue on Blue campaign within a divided Conservative Party. Remain is using the politics of fear: economic disaster if we leave. Brexit reciprocates with the bogey of unlimited immigration if we stay. Whether right or wrong both these arguments are about narrow self interest. The Labour campaign to remain has not received the same level of publicity but, as far as I can make out, they are saying that the EU is a flawed institution in need of further reform. Nevertheless it remains a positive force and Britain should remain and lead the campaign to improve the EU.

There has been a constant, nagging element to media coverage that Labour leader, Jeremy Corbyn is lukewarm in his support for the EU and if Brexit wins it will be his fault for not delivering the Labour vote on Referendum Day. Never mind that he has been touring the country delivering a pro EU message throughout the campaign with very little media coverage. What media coverage there is focuses on confusion among Labour voters about where their party stands in relation to the EU. Of course they are confused. Unless you live in one of the towns where Corbyn and his team visits and delivers the pro EU message you have to rely on the national media for your news. And, with rare exceptions, they are not reporting his contribution to the debate, preferring the drama of the “blue on blue action” in the Conservative Party. “Politician says something sensible and people support him,” is not a newsworthy headline.

But if we do leave the EU it will be down to Cameron, not Corbyn. Consider the evidence.

  1. Tory MPs are split 4 to 3 in favour of the EU. Labour split is 20 to 1 in favour of the EU.
  2. The Cabinet is divided. The Shadow Cabinet is united.
  3. Conservative voters divide equally between Remain and Exit. Labour are between 60% and 70% for Remain.

Whatever the outcome  of the Referendum, Cameron should resign. Any notion that a victory for Brexit is down to Labour equivocation has no justification in fact. If not for Cameron’s cowardly retreat in the face of his euro-sceptic opponents in the Conservative Party we would not even be in this plight.

 

 

ADHD – An Independent Position

There was an interesting article in the Independent on Sunday (20/09/15) entitled “Thousands of children are being medicated for ADHD – when the condition may not even exist,”

The author, William Sutcliffe has just published a novel, “Concentr8” described by Sutcliffe as,

“Concentr8, a novel set in a seemingly fantastical London where a mayor has instituted a programme to push out a behaviour-modifying drug on increasing numbers of misbehaving children and teenagers. Non-fiction extracts open each chapter, slowly revealing this world to be far closer to reality than one would like to believe.”

Sutcliffe argues that the real life use of Ritalin to control the symptoms of ADHD has a lot in common with the themes of his book. I have yet to read Concentr8 but I am interested in what Sutcliffe has to say about ADHD.

HOW REAL IS ADHD?

He starts by questioning the validity of ADHD. The use of drugs to treat it has more than doubled in the last ten years. These drugs are a multi-billion pound industry. Yet there is no clinical proof that ADHD is a genuine illness. People diagnosed with ADHD do have real problems but there are no biological markers that can be used to diagnose ADHD. Sutcliffe’s source is a Sami Timimi, consultant child psychiatrist at Lincolnshire NHS Trust. According to Timimi he,

“is ‘not saying those who have the diagnosis don’t have any problem’, he is adamant that ‘there is no robust evidence to demonstrate that what we call ADHD correlates with any known biological or neurological abnormality’.

“Sami Timimi’s clinic in Lincolnshire advocates a group therapy approach that focuses on ‘relationship building’ rather than ‘behavioural control’, using some of the techniques of NHA (Nurtured Heart Approach) therapy, which involves teachers and parents in a process of developing strategies to transform negative behaviours into positive behaviours. Timimi hasn’t prescribed Ritalin to a single child for five years, and claims a 76 per cent ‘clinically significant improvement’ rate among those patients he discharges.”

Timimi argues that changing cultural attitudes to childhood has privileged narrow measures of ability like exam results and conformity at the expense of creativity. Schools are under pressure to deliver. They pass this pressure onto the children and children are rebelling. This is driving the upward trend in diagnosis of ADHD and the resultant use of drugs to manage behaviour in schools.

As well as medicalizing troubled behaviour Sutcliffe examines the notion that the ADHD bandwagon is expanding to take in normal childhood behaviour.

“Matthew Smith, senior lecturer in history at the University of Strathclyde, and author of Hyperactive: The Controversial History of ADHD, goes even further in his criticism of the medical orthodoxy. He believes the diagnostic threshold is now so low that it has led us to a place where we have pathologised naughtiness as a mental disorder requiring medication. ‘And not just naughtiness,’ he adds. ‘All sorts of children, simply those that daydream and don’t pay attention, could now be diagnosed with ADHD and placed on medication.’

“Timimi sees it specifically as a pathologisation of maleness (boys tend to find it harder to sit still in a confined classroom), while a report in Time magazine cited a psychologist describing the symptoms of ADHD as ‘everything that adults don’t like about children’.”

RESPONSE

I do not agree that only conditions with clear biological markers can be reliably diagnosed or even said to exist. Timimi, in his book, The Myth of Autism, proposes a similar argument to that cited by Sutcliffe in relation to ADHD; namely that autism is the medicalising of men’s and boys’ social and emotional competence. In the absence of any drug treatments for autism, Timimi raises the ogre of the Autism Industry as a substitute villain for Big Pharma in his autism narrative. I dealt with this in my review of his book, “The Myth of Autism.

The lack of biological markers is common in many conditions. But clinicians continue to recognize and diagnose them based on behavioural manifestations. Timimi himself must have diagnostic criteria which he uses to identify suitable cases for his NHA therapy. Like ADHD autism has no biological markers. Like ADHD brain scans have found differences in brain development and function, but not consistently across populations. Like ADHD autism often runs in families but genetic studies have failed to isolate an “autism gene.” Autism and ADHD are both spectrum conditions in which a variety of genes have been identified. Autism and ADHD are often found together. Recent research suggests that if ADHD is diagnosed first an autism diagnosis is often delayed or missed altogether.

My son is autistic. He was diagnosed based on a clinical assessment of him and a developmental history taken from his parents by a trained clinician. Comparable assessments are in place for ADHD. As a teacher I regularly used to complete ratings scales for pupils suspected of having ADHD. Clinicians used these alongside parental interviews and direct observations of the pupil in order to make their decisions.

Timimi’s critique of the medicalization of behaviour is not without merit. People are driven to the edge by the pressures they face. Rather than deal with those pressures, the institutions of state, be they medical, judicial or political will medicalize, criminalize or demonize society’s victims rather than address their grievances. But we also have to address their grief. Children with ADHD are often in genuine distress. Their disorder has been validated by clinical research. We have to address their individual needs for care and treatment as well as addressing the political, social and economic background to their situation.

MEDICATION

If ADHD is a diagnosis that is open to question then we ought to be concerned that the treatment of choice is not Timimi’s group therapy. Instead, the treatment of choice is methylphenidate, usually prescribed under the brand names Ritalin and Concerta. Because it is an appetite suppressant it can have a negative impact on growth in children. It is related to amphetamines and there are concerns about dependency and the possibility that it might exacerbate suicidal tendencies and self-harm in subjects with additional psychiatric problems.

“Professor Tim Kendall, consultant psychiatrist and member of the group that developed NICE’s clinical guidelines on ADHD, has said: ‘If you take Ritalin for a year, it’s likely to reduce your growth by about three-quarters of an inch… I think there’s also increasing evidence that it precipitates self-harming behaviour in children, and we have absolutely no evidence that the use of Ritalin reduces the long-term problems associated with ADHD.’

“So why, if the evidence for the disorder is so shaky, and if the medication has significant drawbacks, with NICE explicitly not recommending drugs as a first-line treatment for school-age children, is Ritalin prescription on an ever-increasing curve? Scepticism towards ADHD as a phenomenon tends to be silenced with a simple retort: ‘Ritalin works.’

“And it does. A child who is inattentive, impulsive, and struggling at school, given Ritalin or another similar stimulant, will often demonstrate a marked improvement in behaviour and academic attainment within days.”

All drugs have side effects. Doctors have to exercise clinical judgement when deciding whether the benefits outweigh the drawbacks. Timimi acknowledges that the short term benefits are genuine but argues that long term use yields no better results than non-pharmaceutical interventions that do not have the same side effects. So why are prescriptions on the rise? The reason given in the article is the power of Big Pharma. The drug companies pay vast sums to market their products and hire experts, who sometimes conceal their conflict of interest, to attest to their safety and efficacy.

RESPONSE

I hold no brief for Big Pharma. But unless governments are prepared to take on the cost of medical research and development and fund our public research institutions accordingly the drug companies will continue to shoulder the commercial risk and seek to maximize returns on the successful drugs that do make it to market. And they will cross ethical lines when doing so. It is unfortunate that the two high profile beneficiaries of Pharma Gold quoted in the article earned their money promoting drugs for Bi-Polar disorder and not ADHD. I do not doubt that similar shenanigans will emerge in relation to Ritalin, Concerta etc. But it would have strengthened Sutcliffe’s argument if he had been able to cite specific examples rather than these two undeniably egregious but well known examples.

The NICE guidelines for treatment of ADHD are plain. No drug treatment for children under six. No drug treatment for mild to moderate cases of ADHD until after alternative treatment options have been tried. Regular clinical assessments and pauses in medication to see if drugs are still necessary. Where children are prescribed drug treatments they and their parents should also be offered psychological support. It is not unethical practice from the drug companies that is behind the breaches to the NICE guidelines. There is a crisis of funding in Child and Adolescent Mental Health Services (CAMHS) which means that the sort of treatments offered by Timimi, while recommended by NICE, are simply not available in many areas. We may debate the reasons why it is so hard to be a child in Britain today but children are suffering and the services they need are being cut under the government’s austerity programme. Even at the outrageous prices charged by the drug companies, and cheaper, generic versions are available, medication often comes cheaper than employing mental health professionals. In these cash strapped times health authorities may feel they have no choice.

DLA

Overall Sutcliffe has offered a well-argued if sometimes provocative position. However he descends into sensationalism with this statement.

Children from poorer backgrounds are more likely to develop, says scientists Yet none of these doubts about the ADHD juggernaut come close to the greatest scandal of all. I was originally drawn to this topic as a novelist following a single conversation with a consultant child psychiatrist who related to me a professional worry of hers. She was concerned that some families might be pushing for a Ritalin prescription for their child not because of genuine medical worries, but because an ADHD diagnosis makes a family eligible for Disability Living Allowance.

RESPONSE

In thirty two years as a teacher in special education I can only recall one family that remotely resembles this picture. All their children did have special needs. The family decided to exploit their status to extract the maximum from the welfare state in a manner similar to those who exploit the anomalies in the tax system to minimize their tax burden.

As the parent of a son with Asperger Syndrome I can also testify to immense difficulty in claiming DLA, even with a bona fide diagnosis. You have to fill in a detailed questionnaire describing the impact that the condition has upon your lives. This has to be endorsed by a professional who fills in their own section of the form. The severity of the difficulties you face determines the size of the payment. If Ritalin is as good as is claimed in the article at mitigating the effects of ADHD, surely that would militate against eligibility for DLA because the condition was being managed with medication and did not make excessive demands on parents and carers? I am well aware that the plural of anecdote is not data. Sutcliffe provides a single anecdote for his argument. I see your anecdote and raise you one.

If poverty is indeed driving some parents to exploit their children in order to game the system I see that as an indictment of our present socio-economic system as much as it is an indictment of the parents. And it is true that poverty has long lasting effects on the mental development of children. Research has found that children growing up in poverty are more prone to mental disorders including ADHD. While internal disorders like anxiety and depression improve when a person’s life chances improve and they move out of their bad situation, get a decent job etc., externally directed disorders like ADHD persist even when life circumstances improve. Was the ADHD caused by poverty and became permanent or was it always there and poverty provided the trigger? I do not know. I do know that our son’s DLA kept us out of poverty when we eventually got it, four years after his diagnosis and helped him make a success of his adult life.

CONCLUSION

The voices of those with ADHD were noticeable by their absence from this article. This is a weakness. As with movements for autism rights and autism self-advocacy, ADDers embrace their diagnosis as a badge of identity while recognizing that it is a neurodevelopmental condition that requires greater public understanding and awareness. They are not the passive victims of an unequal struggle between brave maverick doctors and the weight of the medical and educational establishment. ADHD is now recognized as a condition that continues into adulthood. Celebrity ADDults are coming forward to demonstrate both the positives and the negatives of ADHD. Some of their voices would have added weight to Sutcliffe’s conclusion that,

“children should be reminded that ‘failing’ at school is not failing as a human being. Many of the most creative and successful people only find their path through life in adulthood. Being different is not an illness.”

Dr Lorna Wing, OBE 1928 – 2014

I learned today that Dr Lorna Wing died on Friday. Her contribution to our understanding of autism is unsurpassed. I think it was Dr Ekkehart Staufenberg, speaking at a National Autistic Society conference on Extreme Behaviours within ASD in June 2004 who remarked that if we examined every original and productive idea in the field of autism we would find that Lorna Wing mentioned it first. Or perhaps I heard it the following year at the inaugural NAS International Conference, which was introduced by Lorna Wing. Her opening address is available online. It ended with this prescient nod in the direction of the new diagnostic criteria for autism in DSM-V. I hope that ICD-11 will not be far behind.

The present sections in ICD-10 and DSM-IV on pervasive developmental disorders with their illogical mix of criteria should be thrown out of the window. They should be replaced by a sensible system based on a dimensional rather than a categorical view of autism and other developmental disorders. Each person’s profile of skills and disabilities is far more informative than saying they have Asperger’s syndrome, PDD NOS or any other subgroup in DSM-IV or ICD-10.

I never met Lorna Wing. But like many parents I felt I knew her via her book, originally published in 1971, The Autistic Spectrum. Her academic rigour and accessible style combine to make this one of the few books that can justify its subtitle as “A Guide for Parents and Professionals.” This is probably down to the fact that Dr Wing was herself, both a parent and a professional. Her daughter, Susie (1956 – 2005) was diagnosed with autism when she was three at a time when the cruel notion that bad parenting caused autism was the height of orthodoxy. Adam Feinstein, in an excellent chapter in his History of Autism, “The 1960’s; the parents fight back” describes the role of Lorna and her husband, John, both trained psychiatrists, in helping to establish autism as a neurological condition and not a psychiatric disorder. From the very start rigorous research was allied to parent advocacy for their children. Feinstein quotes from Lorna Wing’s personal memoir of the time.

Up to the end of the 1950s, the general public was profoundly ignorant concerning autism and the same was true of most professionals, even psychiatrists and psychologists. Among the few who were interested and aware, many agreed with the theory that the children were potentially normal but had been made to withdraw by cold, distant and overintellectual parents. Diagnosis was difficult or impossible to obtain and there was no help or support for the parents. Children could be excluded from education in school if they had severe learning difficulties or disruptive behaviour and there were virtually no special schools for children with autism.

According to Lorna Wing two things combined to overturn this state of affairs.

One was the development of objective, scientific investigation into autistic disorders, which showed that children had real disabilities underlying their unusual pattern of behaviour. The approach of the pioneers in research was very different from the armchair theorizing that had gone before. The other was the creation of the National Autistic Society [in the UK].

Lorna Wing played a central role in autism research and in setting up the NAS. At that time it was all about parents and children. And following from Kanner’s pioneering work, the children were seen to have a very rare and disabling condition. But Lorna Wing, in partnership with Dr Judith Gould pioneered the concept of an autistic spectrum in which varying degrees of impairment rather an absolute absence of social recipricocity was key to understanding autism. Their finding were published in the landmark Camberwell Study in 1979, which suggested a fourfold increase in prevalence for autistic spectrum disorders of 20 in 10000 when compared to the 5 in 10000 figure for the narrow definition of Kanner’s autism.

Even under this broad definition most children with autism were still severely impaired and most were found within the special education system. But if, as Wing and Gould have consistently argued, autism is fundamentally a disorder of social cognition what about children of normal or above average intelligence with a similar impairment? Do they have a place on the autistic spectrum. Clinicians in continental Europe  who were familiar with the work of Hans Asperger would answer yes. But Asperger’s work was largely unknown in the English speaking world until Lorna Wing published Asperger syndrome: a clinical account in 1981. She also contributed a chapter to Uta Frith’s book, Autism and Asperger Syndrome (1991) which contained the first published English translation of Asperger’s original paper.

So, over the course of thirty years, Lorna Wing was instrumental in countering the “refrigerator mother” theory of autism. She brought it into the mainstream as a developmental disorder which encompassed the full range of intellectual ability and brought the work of Hans Asperger to the attention of the Anglophone scientific community.

Lorna Wing has also been connected to the other great change in our thinking about autism, that for some people its positive aspects may outweigh the disability. A profile published in 2011 in the Guardian quotes her thus.

Another change has been a focus on the positive elements of autism; a kind of autism pride. “I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviours and personalities of musicians and scientists,” says Wing. She also believes that most of us have some autistic traits. “One of my favourite sayings is that nature never draws a line without smudging it. You cannot separate into those ‘with’ and ‘without’ traits as they are so scattered.”

Lorna Wing was never “either/or.” For her autism remained a complex and fascinating area of study in which the needs of the more able and the less able were acknowledged. This has particular poignancy in relation to her daughter Susie, who was one of those more disabled. The same Guardian profile ends with an account of Susie’s death.

“We were devastated. We were so close to her,” says Wing. “She couldn’t express her emotions but when you came home, her face would light up. That was absolutely wonderful.”

Lorna Wing leaves us a massive legacy embodied in her writings and in the Lorna Wing Centre for Autism. This is a diagnostic centre which pioneered the taking of developmental histories from parents alongside the clinical assessment of children and adults with autism. My son was diagnosed there. Most important for me, considering the horrors that have been inflicted on autistic people and their families in the name of science, is that Lorna Wing showed us how to combine academic rigour and fidelity to the scientific method with a deep humanity. She will be missed.

Autism, serial killers and mass murderers

A recent literature review by Doctor Clare Allely, at the University of Glasgow has been attracting a lot media attention. According to Google News there are press reports in Britain, Europe, America and China, with more to come no doubt.

The Washington Post proclaims a  “Significant’ statistical link between mass murder and autism, brain injury” in its headline. The Daily Mail has “Recipe for a serial killer? Childhood abuse, autism and head injuries are more common in murderers, study claims.”

In contrast, the paper itself, Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers and the accompanying press release from Glasgow University are a model of academic restraint. Dr Allely is quoted as saying

“It is crucial to note that we are not trying to suggest that individuals with ASD or previous head trauma are more likely to be serial killers or commit serious crime. Rather we are suggesting that there may be a subgroup of individuals within these groups who may be more likely to commit serious crimes when exposed to certain psychosocial stressors.

“Research on mass and serial killing is still very much in its infancy. New research is urgently required to understand the mechanisms underlying these extreme forms of violence so that preventative strategies can be developed. We would recommend that in future, all serial or mass killers who are apprehended should be thoroughly assessed using standardised tools for investigating neurodevelopmental disorders including ASD and head injury.”

From the paper’s abstract:

“Our findings tentatively indicate that these extreme forms of violence may be a result of a highly complex interaction of biological, psychological and sociological factors and that, potentially, a significant proportion of mass or serial killers may have had neurodevelopmental disorders such as autism spectrum disorder or head injury. Research into multiple and serial murders is in its infancy: there is a lack of rigorous studies and most of the literature is anecdotal and speculative.”

Unfortunately, however nuanced the language, it cannot hide the fact that this paper is seriously flawed.

Others have commented on the flawed methodology, the over reliance on the internet, books and news reports as sources of data because there are so few peer reviewed studies to call on. (See for example John Elder Robison) Then there is the conflation of serial killers and spree killers, two distinct categories with different psychological profiles. Most striking is that the serial killer takes care to select their victims and tries to evade detection. The spree killer ‘selects’ victims at random and their killing spree is usually the prelude to suicide. They make no plans to avoid detection. These two categories appear to have been chosen because the perpetrators are mass murderers who have each killed at least three people. Other murderers were excluded from the analysis. If we assume for the moment that data was reliably collected this was a missed opportunity to ascertain whether autistic people are over represented in all murder statistics and not just mass murders.

But was the data reliably collected? The headline figure is that 67 out of 239 mass murderers were autistic (28.03%). But only six of these had “a definite diagnosis of ASD.” Twenty one were “highly suspected” of being autistic and thirty three were “possible/probable” autistics. Hang on. Do the math. 6+21+33=60. So what about the other seven? This is a really basic error. It should have been corrected during editing but it was not. The authors also state that all foreign language (non English) documents were excluded from their search and then go on to quote a Norwegian language website as the primary evidence for three of their ”definite” autistics, when, in fact, it only reports that Anders Breivik, the Norwegian mass murderer, might be autistic.

So what about these six definite diagnoses of autism?

Martin Bryant went on a killing spree in Australia in 1996. He had learning difficulties and may have had autistic traits. But a diagnosis of Asperger Syndrome was ruled out by a forensic psychiatrist hired by his defence lawyers. My thanks to Paula C. Durbin-Westby  for the link to the full psychiatric assessment. Having read it I think that he may have met modern criteria for ASD. But we will never know and I do not understand the basis on which Allely et al. assign Bryant a “definite diagnosis.”

Robert Napper is a serial killer and rapist who was detained indefinitely at Broadmoor, a UK facility for the criminally insane, in 2008. Napper is a paranoid schizophrenic who witnessed his father physically abusing his mother until their divorce when he was ten. He was sexually assaulted when he was thirteen by a family friend and underwent a personality change. He was diagnosed with Asperger Syndrome after his arrest. Allely et al. rely on Murderpedia.org for this information.

Wolfgang  Zaugg is referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. A Google search found an entry on Murderpedia which reveals him as an immigrant to Sweden who experienced racism as a child. As an adult he became a Swedish citizen and an accomplished businessman. When his business collapsed and he could not pay his gambling debts he financed his lifestyle through  bank robberies.  He was involved with far right terrorists and embarked on a killing campaign against other immigrants, perhaps to prove his Swedishness. There is no mention of autism.

Nicky Reilly is also referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. He is autistic. He has a diagnosis of Asperger’s Syndrome.  But he never killed anybody. He converted to Islam and was recruited as a suicide bomber by extremists who exploited his autism. The only person hurt in his suicide bomb attempt was himself. Nicky survived and is serving an eighteen year sentence for terrorism. Even if he had been successful he is not your typical serial killer or spree killer.

Ragnar Nilsson is also referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. There is no English reference to him in Google searches. My limited Swedish leads me to suspect that he is the triple murderer in this story.

Cary Stayner claims he was sexually abused by an uncle when was eleven. This was when his brother was abducted by a paedophile and kept a prisoner for seven years. Cary was diagnosed with OCD, psychotic disorder and schizophrenia following his arrest for the murder of four women. According to Murderpedia there was a history of mental illness and sexual abuse in the family. But no mention of autism.

These are the six “definite diagnoses of autism.” We can rely on two, maybe three of the diagnoses. What about the cases where “ASD was highly suspected?” Top of the list is Seung-Hui Cho, who carried out the Virginia Tech massacre in 2007. Lee, Lee, and Ng (2007), the best resource listed for Cho regards any diagnosis as “speculative.”

“So we ask if he met criteria for a diagnosis based on Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) or International Classification of Disease-10 (ICD-10)? Or was he of a criminal antisocial or psychopathic mind? Unfortunately without having interviewed him or having access to his records, we cannot say for sure. We could speculate that he was depressed with delusional thoughts, and perhaps had undiagnosed Asperger's disorder (a mild variant of autism), or was taking illicit substances. But we do not have enough evidence to be certain of a definitive psychiatric condition that could account for his extremely violent behaviour.”

Jeffrey Dahmer is also included. He even gets his own case study. Yet Dahmer was subject to rigorous forensic psychiatric assessment that failed entirely to mention any putative autistic diagnosis. As Emily Willingham points out.

“According to mental health professionals who personally diagnosed serial killer Jeffrey Dahmer, he had a personality disorder. That didn’t stop the authors of a recent paper attempting to link autism and mass murderers, serial killers, and other homicidal maniacs from listing Dahmer as “highly suspected” of having an autism spectrum disorder, along with 61 other people who were never diagnosed with one, including Timothy McVeigh, Terry Nichols, and Dylan Klebold.”

Let us call a halt. If only two out of six ”definite diagnoses” can be confirmed what chance is there that any of the probable or possible diagnoses will stand up to scrutiny? There are compelling factors to do with family histories of abuse and mental illness that are sufficient to explain why these people became mass murderers without recourse to a retrospective diagnosis of autism.

I am also curious as to why the authors examined head injury in tandem with autism. Autism is neurodevelopmental. It is a result of atypical brain development in utero caused by an, as yet unknown, complex set of interactions between genes and environment. These create a predisposition to certain kinds of behaviour in which some of the determining parameters are intelligence and language development. The ameliorating factors include early identification and the quality of early intervention. Brain injury usually results from brute force trauma later in life. It can undo or delay development. But its relation to autism is never explained by the authors.

In conclusion, the authors found two definite cases of autism in 239 cases of mass murder. This is consistent with the rate of autism in the general population. For some reason they included another fifty eight possible cases that do not stand up to scrutiny. Then they get the maths wrong and proclaim their sixty as sixty seven. And from this we are led to the conclusion that there is a possible subset of autistic people who, given the right amount of psycho-social stressors might turn out to become mass murderers, So we should test all future mass murderers for autism, as the authors suggest, in the hope of identifying this subset and curing them? And should we be curing them of autism or of the propensity to become mass murderers? If so, how?

Having read more than I ever wanted to about serial killers and mass murderers in preparing this blog post I would suggest a simpler solution. Let us work together to reduce the number of children who are bullied and abused, especially those who suffer because their neurological difference is misunderstood. In this way we will increase the sum of human happiness and decrease the likelihood of future serial killers and mass murderers, whatever their neurology.

Is Andrew Wakefield a fraud and a bully?

I had hoped that, after he disappeared into obscurity in the United States, I could safely ignore Andrew Wakefield, the disgraced former surgeon, who lost his licence to practise medicine in the UK for his dishonest and unethical role in the MMR Hoax. He did surface last year alongside Polly Tommey, who followed her hero into exile in the USA, when they tried to sell an autism reality show. The premise was simple. Film autistic children in distress. Take them to Arthur Krigsman to be given a colonoscopy and diagnosed with autistic enterocolitis. Then cure them with special diets and supplements and film the happy outcome.

This project never came to fruition. But Wakefield and Tommey did intervene in the case of Alex Spourdalakis. They filmed this young man in distressing circumstances in hospital. They made allegations about the treatment he received, relying on the patient confidentiality enshrined in US law to prevent health authorities from responding to their claims. They had a willing accomplice in Alex’s mother and arranged for Alex to be treated by Arthur Krigsman. But refusing conventional treatment and opting for quack remedies did not have the desired effect. Alex was subsequently murdered poisoned and stabbed to death by his mother. We await the outcome of her trial. Both Wakefield and Tommey were complicit in attempts to use their film to justify her crime.

Wakefield’s most recent exploit pales in comparison to that example of sleaze. It seems that he has taken exception to being called a fraud. Actually he has been called a fraud many times, most noticeably by Brian Deer and Fiona Godlee in the British Medical Journal. He tried to sue them but a Texas court rejected his claim and the appeal has yet to be settled. Time Magazine reported that Wakefield was a fraud. So did CNN, The Daily Telegraph. David Whelan, writing for Forbes Magazine even suggested that the US authorities should deport Wakefield to face fraud charges in the UK. With the exception of his outstanding appeal with regard to the BMJ Wakefield has not responded to any of these reports until now when Emily Willingham, also writing for Forbes Magazine called him a fraud.

Actually Ms Willingham did not make a big deal about the fraud. Her main point was to highlight a recent review of gut issues and autism in Pediatrics which suggests that

It is clear that greater clinical and research scrutiny is needed to increase awareness on this topic and thus support development of the best standards of care. Previous controversy surrounding the MMR vaccine and proposed causal link between ASD and infection of the GI tract probably deterred investigators from dedicating resources to examine GI functioning in this population while fostering uncertainty in the ASD community regarding the validity of this line of inquiry.

This seems perfectly clear to me. Wakefield’s fraudulent research has tainted the investigation of potential links between autism and GI functioning. He has discouraged other investigators into this link and made it difficult for them to obtain funding. He has performed a great disservice to science. More importantly, autistic people with genuine GI dysfunction have struggled to have their symptoms taken seriously. They or their parents have had their concerns dismissed by health professional who are chary of any association with Wakefield’s ideas. It is a bitter irony that some are then welcomed by Wakefield’s acolytes into the alt-med world of untested and unproven biomedical remedies for autism.

Wakefield has written a  letter to Ms Willingham threatening her and Forbes Magazine with prosecution, “pending legal advice.”  He concludes

You are also advised that I live and work in Austin, Texas where my business is headquartered, and that my work is conducted throughout the US. Your defamatory statements about me will undoubtedly cause me to suffer significant personal and financial damage.

My lawyers are currently dealing with Deer and his co-defendants. They will be turning their attention to you well within the statute of limitations for filing a case against you and Forbes.

Three things strike me. One, this is Wakefield acting off his own bat. He has not taken legal advice. That is pending. He has written a threatening letter to a blogger to bully her into silence “pending legal advice.“  Two, he is not going to do anything unless he gets a successful outcome in Texas regarding his action against the BMJ (Deer and his co-defendants ). Three, talk of prosecution and defendants in relation to civil law is a total nonsense. There is only one criminal in this case and he can count himself lucky that nobody has seen fit to prosecute him yet.

So why is he doing it? My best guess is that he has issued this threat and published it on Age of Autism to rally the troops and revitalize his flagging support. And why is he doing it to Ms Willingham? Perhaps he thinks she is more vulnerable than CNN or Time Magazine. Maybe he hoped that Forbes would take the corporate view and silence her to fend off a potential troublesome lawsuit. Not for the first time he has been proven wrong. Ms Willingham is an eminent scientist, an educator and an accomplished journalist. Forbes recognize her talent and show no signs of surrendering to Wakefield’s bluster.

What Doctors Don’t Tell You is wrong about autism.

What Doctors Don’t Tell You (WDDTY) is a magazine that claims it is “helping you make better health choices.” But it has drawn criticism from those like Andy Lewis who wrote on the Quackometer blog,

this magazine is the latest offering from Lynne McTaggart who produces the What Doctors Don’t Tell You website. It is one of the most consistently misleading health sites in the UK, reveling in misinformation that routinely undermine readers’ confidence in their doctor and to scare them into accepting questionable alternatives, such as vitamin pills. The website and magazine advertises many problematic health products that could harm people if used in place of real medicine.

I have just bought a copy from my local supermarket. It is a glossy magazine with lots of adverts and articles promoting diets, vitamins, supplements, creams and  lotions, super foods, exercise regimes and holistic therapies. There are even alternative remedies for pets. It is not always clear where editorial content ends and advertising begins. The pet therapies are a case in point. Paul Boland contributes a two page spread on veterinary acupuncture. Turn over and there is a full page advert for Natural Health Vet, a company selling products “developed, used and recommended by …” Yes, you guessed it, Paul Boland. Advertorial, anybody?

The headline story is called, “Reversing osteoporosis. You can rebuild your bones.” It tells us that osteoporosis is “a lifestyle disorder” that is reversible by following a diet, supplement and exercise plan. We are told that Linus Pauling was right. Cancer is curable with high dose Vitamin C. But you have to inject it, not ingest it. An osteopath writes an article claiming you can cure whiplash with osteopathy. Lifestyle changes can reduce your risk of dementia by 60%.

Like most people who pick up magazines in supermarkets I am not a doctor and have no way of evaluating these claims. I have no argument with healthy eating and regular exercise. But I am suspicious of claims that doctors and drug companies are in it together to spread misleading information and promote the use of profitable but unnecessary medications. However this issue does contain an article on autism, which is why I bought it.  And I do know enough about autism to critically read that article. And if WDDTY is wrong about my area of expertise why should I believe them about anything else?

The Autism Explosion

This month (April 2014) the print edition of WDDTY features an article entitled “Autism: it’s all in the gut,” which begins with a familiar claim.

There’s one startling fact about autism that marks it out from all the other chronic diseases of modern times – the explosion of cases over the past 30 years.  Back in 1985, just six children out of every  10,000 were diagnosed with autism; today one in every 88 children has the condition, and some reckon it affects one in 50 children.

I have four problems with this statement, apart from the fact that it is wrong.

  1. If you are going to compare statistics do not make your readers do the math. Make the comparison obvious. 1 in 88 equates to 112 in 10000 which makes for easier comparison with 6 in 10000.
  2. Source your statistics. There are a number of references at the end of this article. But none are given for the epidemiological data. Hence the reader cannot check its accuracy.
  3. Use real statistics. WDDTY is a UK publication and the key data points for autism epidemiology in the UK are 4.5 in 10000 (Lotter 1966); 21.2 in 10000 (Wing and Gould 1979); 116 in 10000 (Baird et al 2006). All these studies are referenced on the National Autistic Society website. None of them are mentioned by WDDTY.
  4. Make sure you are comparing like with like. Wing and Gould found similar results to Lotter when they used his criteria. But a broader definition of autism produced their higher figure. Baird used different criteria again (ICD-10) and found 38.9 in 10,000 for childhood autism, and 77.2 in 10,000 for other autism spectrum disorders. WDDTY use headline figures for all autistic spectrum disorders and pretend they are referring to the narrow definition of childhood autism used by most researchers for 40 years after Kanner’s original description of autism in 1943.

There may or may not have been an actual increase in autism over the last 30 years. But there are alternative explanations for the increase in numbers.

  1. If you go out and look for autism in the general population you will find more cases than if you sit in your office waiting for patients to arrive. Studies that screen whole populations and directly assess individuals identified in that screening process produce higher figures than studies that interrogate patient databases.
  2. If you change the criteria for autism you can engineer dramatic increases as demonstrated by Wing and Gould in their Camberwell study. Using Lotter’s strict criteria they found 4.9 in 10000 which compares well to Lotter’s finding of 4.5 in 10000. But  by including all children identified with the now familiar triad of impairments, regardless of whether or not they met Lotter’s criteria, they found a four-fold increase. This is easy to understand if you compare the criteria. Lotter required “a profound lack of affective contact.” The triad refers instead to impairments in ability.
  3. The success of  advocacy groups in raising awareness has led to better estimates of the numbers. Autism statistics were just not collected thirty years ago and are still not in many countries. Without numbers there is no impetus to create services. But once services exist they drive the numbers up. California’s autism statistics were used to fuel claims for an autism epidemic until it was pointed out that the massive unevenness in rates within California coincided with the availability of services in affluent areas (high rates) and the lack of services in poorer areas (low rates). Those states in the USA with a reputation for providing good autism services have higher rates than the national average. In the UK 40 years ago autistic children were denied access to education. Now a diagnosis is a passport to special educational provision, albeit of variable quality,

All of which gives me cause to question that sentence at the beginning of the WDDTY article.

There’s one startling fact about autism that marks it out from all the other chronic diseases of modern times – the explosion of cases over the past 30 years.

Its All In The Gut

WDDTY argues that

New research is narrowing the focus to the gut. Many autistic children have a host of gastrointestinal (GI) problems that carry on into adulthood, and some of the worst symptoms seem to improve if the diet is changed, often to exclude gluten.

The GI narrative has a long history and very little definitive evidence to support it. In 2010 a Consensus Report by 28 doctors and researchers published in Pediatrics, the Official Journal of the American Association of Pediatrics, concluded that most studies suffered methodological limitations. Small sample sizes, lack of a control group, failure to apply standardized definitions of GI disorders and of severity of autistic symptoms were commonly cited. The consensus was that GI symptoms were probably more prevalent in people with ASD but we did not know for certain and could not say why. Among the 23 consensus statements the following are most pertinent to our present discussion.

Statement 1 (Key Statement)

Individuals with ASDs who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without ASDs who have the same symptoms or signs. Evidence-based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (GERD) should be developed.

This is the key statement. Too often GI symptoms in autistic patients are misinterpreted as behavioural manifestations of autism and treated accordingly. This is most likely to happen in young children and others who are unable to verbally describe their symptoms. The symptoms continue unabated and may worsen. Caregivers then turn to practitioners of alt-med, like the purveyors of WDDTY, who persuade them that these GI symptoms are not the result of autism but its cause. And of course they have the explanation and the cure. But other consensus statements from the AAP undermine this simplistic perspective.

Statement 4

The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.

Statement 5

The evidence for abnormal gastrointestinal permeability in individuals with ASDs is limited. Prospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASDs.

Statement 11

Anecdotal reports have suggested that there may be a subgroup of individuals with ASDs who respond to dietary intervention. Additional data are needed before pediatricians and other professionals can recommend specific dietary modifications.

Statement 12

Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Statement 18

The role of immune responses in the pathogenesis of gastrointestinal disorders in individuals with ASDs warrants additional investigation.

Statement 19

The role of gut microflora in the pathogenesis of gastrointestinal disorders in individuals with ASDs is not well understood.

This is serious work. There were seven working parties reviewing the expert literature in their fields: child psychiatry, developmental paediatrics, epidemiology, medical genetics, immunology, nursing, paediatric allergy, paediatric gastroenterology, paediatric pain, paediatric neurology, paediatric nutrition, and psychology.

Antibiotics and Processed Food

Yet WDDTY chose to ignore them completely. Instead they make this claim for a study of 20 autistic children entitled “Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children.”

The findings suggest that an overuse of antibiotics and  the typical Western diet of processed foods could be significant factors in autism.

But the study specifically excluded children who had received antibiotics in the previous month on the grounds that antibiotic usage would have confounded their results. Moreover the study is clear that its autistic subjects do not follow a typical western diet. Five of the twenty were on a gluten free, casein free diet at the time of the study compared to one in the neurotypical control group (n=20). 13 were taking additional supplements compared to 5 in the control group. Taken overall the autistic group consumed more probiotics and more sea food than the control group. Nearly all the parents of the autistic reported problems with the amount their child ate and their child’s restricted diet. This data was not available for the control group. From this it is reasonable to assume that their atypical diet was more likely to contribute to their atypical microflora than the “typical western diet of processed foods” consumed by the typically western control group.

While the autistic group did have significantly higher GI symptoms than the control group there was no relation between the severity of GI symptoms and the severity of their autism. All of which gives me cause to question the statement that

The findings suggest that an overuse of antibiotics and  the typical Western diet of processed foods could be significant factors in autism.

Gluten and Casein

WDDTY believes another study supports their suggestion that antibiotics and processed food are significant factors in autism. In fact it does nothing of the kind. It does not mention antibiotics and did not collect data on or control for variation in diet. It included four children on a gluten free diet “Because the effect of gluten-free diet on antibody levels in autism is not known.”

It tested autistic children for antibodies in their blood associated with celiac disease and compared them with normal controls. Despite higher levels of antibodies to gluten in the autistic group none of them had celiac disease. There are problems with this study. All 37 autistic subjects were recruited in the USA. But 62 out of 74 members of the control group were recruited in Sweden. Why? And there was no data on the GI disorders in the controls despite extensive but incomplete data on the autistic group. I agree with Laurent Mottron who commented on the study.

These data are uninterpretable in their relation to autism without a non autistics comparison group matched in gastro-intestinal problems, (using the same instrument of course).

But WDDTY did not cite these studies to prove a point. They are included because they bear some relation to the subject and seem to show that WDDTY have done their research. WDDTY rely on their readers not following up on references and reading the actual studies. I very much doubt whether the author read them either.

Meanwhile back in the UK

WDDTY turns to

researchers at the Autism Research Unit at the University of Sunderland, now working as ESPA Research.

This was an offshoot of the university that now operates under the auspices of ESPA since its driving force, Paul Shattock, has retired from his position in the Pharmacy department at the university. I know Paul Shattock. He has an autistic son and set up ESPA to provide educational services for autistic people in the Sunderland area. For this and other services to autism he received a well merited OBE. For a while I was sympathetic to his opioid excess theory of autism causation, often referred to as the Leaky Gut Theory of Autism. But other researchers have tried and failed to replicate his findings.

The theory has been around for a lot longer than the fifteen years cited by WDDTY. I bought a copy of the pamphlet, “Autism as a Metabolic Disorder” from Paul Shattock in 2002 when I was in Sunderland to see if ESPA could provide a suitable placement for my son. Mine is the second edition (May 2001) and even then it stated that the Autism Research Unit had been testing samples for fifteen years. But the theory is older than that. According to the pamphlet

This model is based upon acceptance of the opioid excess theory of autism as initially expounded by Panksepp (1979) and extended by Reichelt (1981)  and ourselves (Shattock 1991).

When I first entered the online autism world of newsgroups and email listservs back in 1997 the leaky gut theory was very popular with parents. It went like this.

  1. Some children have difficulty digesting the proteins gluten (found in grains like wheat and barley) and casein (found in dairy products).
  2. This leads to an excess of peptides in the gut.
  3. If the gut wall is damaged these peptides will leak into the bloodstream and cross the blood brain barrier.
  4. Once inside the brain they either imitate the activity of opioid peptides occurring naturally in the brain or bind to the enzymes that normally break down these naturally occurring opioid peptides.
  5. The result is the same: excess opioid activity in the brain.
  6. This explains the “autistic” behaviour of sufferers. They are like drug addicts who swing between being “high” on the peptides or doing “cold turkey” when they need more peptides. This may also explain some of the cravings for dairy and grain based products in autistic children.
  7. Remove gluten and casein from the diet and the symptoms will diminish.
  8. But they may get worse initially when the “cold turkey” phase kicks in.

This hypothesis was attractive to parents because it seemed to fit their experience; children with food fads or a history of being picky eaters, who appeared to suffer from disruptions to normal perceptual, cognitive, emotional and social development with resultant mood swings and behavioural difficulties. But the hypothesis proved rather too flexible.

The initial theory suggested that children who were prone to infections would have their gut damaged by antibiotics which destroyed the good bacteria in the gut and let the bad bacteria take over.  Yeast and other fungal agents were also suggested as potential villains. So you had to repair and restore the gut to good health while removing the gluten and casein from the diet. Vaccines, particularly MMR, were also implicated based on parental reports. The measles virus from the vaccine was supposed to invade the gut and damage it. So was the damage bacterial, fungal or viral? The picture was further confused by arguments that it was the measles virus that invaded the central nervous system and led to  the autistic symptoms by causing encephalitis. Then came attempts to synthesize all this with a hypothesis from the USA that the mercury content in some vaccines was to blame. Either it induced mercury poisoning in vulnerable children which was mistakenly diagnosed as autism or it acted to make the gut more susceptible to damage from the MMR vaccine.

Pick a card, any card …

Real science, when faced with conflicting and sometimes contradictory theories, tries to control for all the variables and test each one in turn. What is the evidence for leaky gut in autistic subjects? Is leaky gut caused by bacterial, fungal or viral factors? Can we detect excess opioid activity in the brains of autistic people? Given that autistic people are supposed to suffer the double whammy of leaky gut and gluten/casein intolerance what is the evidence for a “single whammy” (either leaky gut or gluten/casein intolerance) in the non-autistic population?

WDDTY does not ask these questions. It does not ask any questions. Instead we are asked to accept that all the theories of causation promoted by the alt-med community are equally valid. There is no conflict between them. Choose a theory, any theory. You pays your money (in most cases a lot of money) and you takes your choice. Any number of therapies may help: vitamin D therapy; gluten and casein free diet; supplements; sensory enrichment (which just snuck in with no mention in the main article of the genuine sensory difficulties in autism); chelation therapy – the  removal of toxic heavy metals like mercury that are alleged to be there in excessive quantities in autistic children.

The Bits on the Side

The article includes two sidebars. One is a puff piece for a book in defence of Andrew Wakefield and the role of vaccines in autism by a quacktitioner called Graham Ewing of Montague Healthcare, a one man operation that he runs from his family home in a village near Nottingham, who promotes his own “virtual scanning” technology as a cure-all for most things. If your credulity is already stretched prepare for it to be snapped by Dr Weinberg and his NeuroModulation Technique™ which has reversed autism, cured arthritis, Crohn’s disease, IBS and other inflammatory disorders. Moreover the person being treated does not have to present for the treatment. The therapist can test functioning by muscle-testing their own arm and transmit their therapy by the power of thought. As WDDTY states in its intro to this sidebar

People of a logical, dogmatic or sceptical disposition, please look away now.

Yes. please do. And on this evidence I suggest that we continue to look away and dogmatically insist on evidence based science to guide our health choices rather than the “good old fashioned medicated goo” on offer from WDDTY.

Tony Benn: the legacy

Herbert Shapiro is probably not that well known here in the UK. The son of Russian, Jewish immigrants he was a professor of history in the United States from 1964 until his death, aged 84, in 2012. His speciality was African American History and he wrote numerous books and articles on the subject. His obituary writer, fellow historian, Roger Daniels singled out his magnum opus, White Violence and Black Response: From Reconstruction to Montgomery (1988), as “Outstanding.”

Herbert Shapiro was not just a student of black civil rights. He was an active supporter and on March 25, 1965, marched on the last day of the historic march from Selma to Montgomery, Alabama as part of a delegation of historians. Daniels also pays tribute to his work as a trade union activist who helped to,

“transform the local chapter of American Association of University Professors into an effective collective bargaining unit, and to participate in two brief, successful work stoppages that improved both wages and benefits for regular full-time faculty.”

When I heard of the death of Tony Benn my thoughts turned at once to Herb and his wife Judith, both of whom I met on a train many years ago in the UK. As I recall our conversation began because Judith noticed a book I was reading about autism. She was an educator with an interest in the subject. The conversation turned to politics and I discovered that they were combining their holiday with a visit to their old friend, Tony Benn.

We parted on good terms never to meet again but kept up a sporadic correspondence. When the second Gulf War began Herb and Judith posted me details of the anti-war movement in Cincinnati. I posted them pictures of the million strong anti-war demo in the UK. Tony Benn, of course, was a leading spokesman for that movement. And, of course, in numerous tributes he has been damned with faint praise for holding to his principles, qualified by pointed reminders to the political outcomes. Benn fought and lost as did those of us who fought alongside him.

But those who seek to diminish his legacy in this way miss the point. Men and women of goodwill, courage and integrity who do what they think is right without regard for personal gain or ambition will always be found wherever there is injustice. Sometimes our courage might fail us. Too often we are outnumbered or outmaneuvered. But sometimes we prevail. Herb began his teaching career in a segregated college in Georgia. He introduced his students to African American history and lived to see an African American President of the United States of America.

Today’s obituary writers are eager to tell us not only that Benn failed, but also that he represents a dying breed, the like of which we may never see again. (They hope!) But so long as we are seeing levels of inequality in which the richest hundred people in the UK own as much wealth as the poorest 18 million (30% of the population) the conditions exist to create more not less people like Tony Benn. It is not a question of if but when.