Tag Archives: Autism

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.

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.

Susan Boyle and Asperger Syndrome

Susan-Boyle-at-home-008

In today’s Observer Magazine there is an article about Susan Boyle in which she reveals her recent diagnosis with Asperger Syndrome. She found fame and fortune 4 years ago on the talent show, “Britain’s Got Talent.” Now age 52, she is a best selling recording artist and a multi-millionaire. So why does she need a diagnosis? Susan’s answer is instructive, and a valuable lesson for all who question why we would ever seek to label our child or ourselves.

“Asperger’s doesn’t define me. It’s a condition that I have to live with and work through, but I feel more relaxed about myself. People will have a greater understanding of who I am and why I do the things I do.”

Without the diagnosis other people wrongly labelled her. At school she was “Simple Susan”. News stories have speculated about her supposed learning difficulties or alleged brain damage. <sarcasm> Clearly there has to be a reason why a plain thinking, plain looking, middle aged women can sing with the voice of an angel. </sarcasm> I only hope that the media circus does not now use Asperger Syndrome as an excuse to dismiss Susan Boyle, the person and describe her singing ability as a “special talent” or “savant skill” that belongs to autism and not to her.

If truth be told, I am not a fan of Susan Boyle, the singer. But after reading this article I am definitely a fan of Susan Boyle, the person. I agree with the author that she is warm, kind, empathic and intelligent. She has battled with prejudice. She has coped with personal tragedy and depression. She admits to feeling some anger after her struggles to overcome ageism, sexism and disableism in order to be recognized, not just as a talented singer but, more importantly, as the thoroughly decent and worthwhile person she is.

Autism: Challenging Behaviour

Introduction

Michael Fitzpatrick is a retired GP with a profoundly autistic son. Mike is also the author of MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. He usually writes for Spiked Online. But he has asked me to host his review of a recent BBC4 documentary, Autism: Challenging Behaviour. The programme claimed to be a

Documentary exploring the controversy around ABA (Applied Behaviour Analysis), an intensive intervention used to treat autism, by meeting people who are both pro- and anti-ABA.

Applied Behavioural Analysis is a system of instruction devised by Ivor Lovaas that  is based on B. F. Skinner’s theory of operant conditioning. Its supporters are wont to claim that it is “the only scientifically proven therapy for autism.” Here is a typical offering from Families for Early Autistic Treatment (FEAT) in British Colombia, who are part of a campaign to have ABA mandated as a necessary medical treatment for autism in Canada.

Effective, scientifically backed treatment for autism exists (the “Lovaas” Method – a form of Applied Behavior Analysis). Lovaas behavioural treatment for autism is medically necessary and prescribed by physicians because it is the only treatment available that significantly improves this biological disorder. Lovaas behavioral treatment for autism is the most thoroughly documented treatment of children with autism. Scientific studies document a 47% recovery rate from autism and a near 100% improvement rate for children who receive Lovaas early treatment.

In the United States there is a campaign to compel health insurance companies to include ABA as a medical intervention for autism, ABAmaCare if you like. These campaigns are not without controversy. Michelle Dawson, an autistic individual and autism researcher in Canada is perhaps the most eloquent advocate who challenges the scientific and ethical foundations of ABA. She is not alone. But the BBC4 documentary made no reference to Michelle’s critique of ABA.  It followed the more familiar route of human interest documentaries. The case for ABA was made using heart warming individual success stories, balanced by critical remarks from autism experts who questioned its scientific and ethical credentials. No prizes for guessing who won. So thank you Michael Fitzpatrick for eschewing emotional appeal and providing us with this critical review of the documentary.

801221895Autism: Challenging Behaviour

Producer/Director: Fran Robertson

BBC4, 5 November 2013

Fran Robertson’s documentary tells the story of two engaging little boys with autism – Jack aged three, and Jeremiah, four – who attend Treetops school in Thurrock, Essex, the only state school in the country in which the curriculum is based on the intensive behavioural techniques of Applied Behaviour Analysis (ABA). Blonde with an angelic smile, Jack responds with tantrums and projectile vomiting to any food beyond a highly restricted liquid diet. Dark-haired and bright-eyed Jeremiah seems to inhabit a ‘world of his own’ from which his Indian parents struggle to engage him. In the course of the film we follow the attempts of teachers and teaching assistants to overcome these boys’ behavioural and communication difficulties through the techniques of ABA.

The film explores the long-running controversy around ABA through interviews with academic critics and adults who have been diagnosed with autistic spectrum disorders, including one mother who was diagnosed with Asperger’s syndrome following her son’s diagnosis. Early forms of ABA, which emerged from the pioneering work of the Norwegian psychologist Ivar Lovaas in California in the 1960s, were condemned for using punitive ‘aversive’ techniques. Though these have long been abandoned, critics still claim that ABA is dehumanising, seeking to ‘normalise’ autistic behaviours – such as repetitive, self-stimulatory, activities – which are functional for people with autism.

Another area of controversy around ABA – the question ‘does it work?’ – is avoided in this documentary, which tends to take at face value the assertion by campaigners, teachers and parents committed to this approach that it is effective. Much research, summarised in two recent systematic reviews, has failed to provide categorical endorsement. Studies show that while some children with autism benefit from ABA, some do not; some benefit more than others; and some children make progress without intensive behavioural intervention (and to a degree comparable with those who receive it). The problem is that we still do not know how to identify which children are most likely to benefit from ABA and which from other forms of intervention, or what particular aspects of the ABA approach are likely to benefit particular children.

At the end of Autism: Challenging Behaviour, we see Jack cheerfully tucking in to sausage, beans and chips with his mother and Jeremiah playing happily with his parents. But this emotionally manipulative presentation of ABA takes little account of the experience of many parents – that of limited progress despite immense efforts and of disappointment at their failure to achieve the promised outcomes.

The uncritical advocacy of ABA goes even further in a number of episodes featuring the Scandinavian therapist Gunnar Frederickson, who follows in the dubious tradition of campaigners who claim that ABA can achieve “cure” or “recovery” from autism. As British autism expert Rita Jordan has observed ‘the whole ABA movement appears increasingly more like a cult than a science’. Charismatic, dogmatic and sanctimonious – and with a passing resemblance to the rock’n’ roll philanthropist and activist Bono – Frederickson takes the film crew to the scene of his greatest triumph over autism. We meet a 16 year old boy, treated by Frederickson at the age of three when his parents were told he was ‘unlikely to speak’. He is now ‘indistinguishable from his peers’ and a member of the Swedish badminton team. He lives with his happy family in a beautiful, spacious, white house (in stark contrast to the dark, cramped and impoverished conditions in which we see some of the British children with autism are living). While any sceptical observer would want to know more about both the original diagnosis and the current level of functioning, it is the wonder cure that makes good television – and guarantees continuing demand for ABA, despite the lack of scientific evidence for its efficacy.

It is important to note that some proponents of ABA – such as Professor Richard Hastings – repudiate both the ‘normalising’ and the ‘cure’ agenda: ‘just because some individuals or organizations argue that ABA can lead to some sort of recovery from autism does not mean that this is what ABA is all about.’

Michael Fitzpatrick 6 November 2013

Further reading:

Howlin P., Magiati I., Charman T.(2009). Systematic review of early intensive behavioral interventions for children with autism. American Journal on Intellectual and Developmental Disabilities. 114(1), pp. 23-41.

Spreckley M., Boyd R.(2009). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics. 154(3), pp. 338-344.

Prof Hastings blog: http://profhastings.blogspot.co.uk/

Michael Fitzpatrick, ‘The Lovaas cure: ABA is it a fad?’ in Defeating Autism: A Damaging Delusion, Routledge, 2009, p138-141.

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”.*

 

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.

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