Category Archives: quackery

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.

Psychoanalytic Woo for Autism

However we may judge the legacy of Sigmund Freud’s ideas, when it comes to understanding autism these ideas have been detrimental. The most recent example to make the news, The International PreAutism Network [iPan] may seem benign in comparison to Refrigerator Parents or Le Packing. But the effect is no less insidious for all that. Melanie Sykes is a TV presenter with an autistic son who donated her winnings from a celebrity game show to iPan.  I first came across iPan at a conference on autism. Their material had been inserted in the conference goody bag for delegates. Fortunately, as an invited speaker, I was able to denounce their psychobabble in an impromptu addition to my presentation. I have subsequently been invited back. iPan’s material is no longer included in information packs for delegates. I thought no more about them until I came across a recent entry in the Quackometer that referred to the Melanie Sykes story.

Autism, as we have come to understand it, was an unknown concept in Freud’s day and age. According to Grinker, in Unstrange Minds, (page 44)

Before Kanner, “autistic” referred to a symptom not a syndrome. Sigmund Freud talked about the word “autistic,” too. He contrasted the “social” with what he called the “narcissistic,” but was quick to point out that by “narcissistic” he meant the same thing as “autistic,” “in which the satisfaction of the instincts is partially or totally withdrawn from the influence of other people.” Freud didn’t like the word “autistic” at all, but it’s not clear why. He may have objected to the fact that by the early 1920s some physicians had started to use the word “autistic” to refer to daydreams and fantasies; Freud thought the word, if it was used at all, should refer to an impairment in social functioning. It’s amazing that Freud was so perceptive, so long ago.

Unfortunately for us, since Freud’s death his followers have been less perceptive in divining the cause of this social impairment. iPan is more subtle than the hapless Tony Humphreys, currently courting controversy (and publicity for his self help manuals) after a provocative article in the Irish Examiner.

iPan try and have it both ways. They are careful not to blame parents. But they do maintain that there is a break down in the normal infant – caregiver relationship. They suggest that the breakdown originates in the child but the parental response is crucial. If you spot the warning signs early enough and learn how to deal with them the incipient autism can be prevented.  They claim these warning signs of autism are detectable as early as three months old. Intensive psychodynamic therapy for the infant  and the family – 6 hours per day, 6 days a week for three to four weeks and hour long weekly sessions afterwards for an unspecified time period – are supposed to prevent the autism developing. They have a clever advertizing slogan:

It can be too late but it can never be too early

So, if you have any worries at all contact iPan before it is too late. They have a helpful checklist of behaviours to look out for.

Social Interaction
Is the baby unresponsive to your voice or to their own name?
Does your baby not smile at you when they see you?
Does he or she not make eye contact ?
Does he/she “pull back” when you lift them up?
Does your baby prefer to play alone or with objects versus play with other children?

Communication
Do you notice that your baby does not “babble”, or make typical baby noises? or
Does he/she repeat sounds over and over?
Does your baby seem excessively irritable / fussy?
Behavior
Does your baby sleep excessively for their age?
Does your baby seem too subdued?
Does your baby seem too stiff or too floppy?
Is the baby obsessed with certain objects?
Does your baby appear to become overwhelmed by certain sounds and noises?
Does your baby not want to be laid on their stomachs?

Parent
Does your child “worry you”?
If so, trust your intuition! Call us and inquire about what you can do to treat the early signs of autism or review our section on What Can You Do?

I imagine that most parents reading that list will find something to worry about. So they download the checklist of 17 items for the child and 11 for the mother or caregiver. It is the sort of checklist that an undergraduate might devise as part of their course work but would be unacceptable in anyone studying for a higher degree. It is an observation schedule that confusingly also invites the observer to make judgements about intentionality and capacity. Each item can be scored as never, twice or less, more than twice, always over an hour of observation. So how do you score this?

ABILITY TO RELATE
–To other children
–To adults

Or

EXPRESSIVENESS
–The body or facial expression of emotional states (e.g. sad, worried, anxious, bland, happy, or others) specify

Somebody without any training, presumably a relative, is supposed to complete this while observing parent-child interactions for an hour. You send back the completed checklist along with a home video of the behaviour that you are worried about and iPan will diagnose whether or not your child has pre-autism and book you in for therapy.

iPan does not deliver the assessment or the therapy. That is down to its partner charity, the Parent Infant Clinic. Their website is a mixture of accepted knowledge about normal child development and unsubstantiated speculation about how this is affected in autistic children. So they compare brain scans of normal children with traumatized Romanian orphans to show the impact of bad caregiving on children and follow up with a simplistic account of redundancy in the developing brain and suggest that emotional factors are decisive in determining which neural networks are strengthened and retained.

Research confirms our work.
When we first began our work with infants and parents three decades ago, we were working from clinical intuition. Today, neurobiological research validates our early findings that healthy bonds and healthy brains depend on quality relationships with the primary caregivers (usually parents) and on the consequent connections of neurons in the brain.

It is all a bit too glib. There are none of the nuances, qualifications and acknowledgments of uncertainty that I get from reading the work of neurologists doing the actual research. But there we have it. According to Doctor Stella Acquarone (not a medical doctor but a PhD in psychology), the guiding light behind iPan and the Parent Infant Clinic, psychodynamic theory has been proven correct by neuroscience. So you can sign those cheques for treatment with complete confidence.

There is no mention of cost on the website. We know it is expensive because one of the reasons that iPan exists is to raise money to pay for people to access the treatment. But in 2006 the Daily Telegraph carried a report on this therapy that claimed a cost of just under £30,000.

The treatment, however, does not come cheaply. An initial consultation, depending on whether one sees a senior or junior therapist, can cost up to £100. A three-week intensive course, which involves six hours of counselling each day for six days a week carried out by six senior therapists, costs £29,000.

The Telegraph concluded with some highly critical remarks about the therapy.

Not all child experts are impressed, however. Professor Frank Furedi, a sociologist from the University of Kent in England and author of Paranoid Parenting is scathing. He believes such therapy preys upon parents’ natural anxieties. “At the moment there is an obsession with setting children on the right emotional path from the beginning, from birth,” he says. “Even in day-care centres, the emotional intelligence of children is seen as paramount.
“Increasingly, adults are socialising their children less and less: they are scared to let them play with toys that are not seen as having a developmental outcome. We are even doing this when a child is in the womb, playing them classical music and the like.
“This sort of thing is parasitical. By preying on anxious mothers and re-enforcing those fears, we have created an obsession that if one doesn’t do these things, one is a bad parent.
“Parents would be better off using their intuition. Think about how they behave in the home. About what kind of signals they send out to their children. Getting their children to have a robust sense of what is right and what is wrong early on is much more valuable.”

I do not agree with everything Frank Furedi has to say. But on this occasion he is right to signal alarm.

I am equally concerned by the misunderstanding of autism evident on the Parent Infant Clinic website. If you claim to be able to spot “pre-autism” in babies you should at least be able to demonstrate a basic knowledge of the autistic spectrum. Instead we get this.

In the world of autism there is a wide spectrum of symptoms. Terms can be confusing as there are overlapping symptoms with other disorders. Autism, consequently, is often confused with Asbergers(sic) and other communication Disorders which encompass speech and language irregularities.

Autism is an early psychosis and typically shows up at an early age. Early psychosis means that the child’s mental development process is such that it is hard for them to cope with reality. Signs of autism can be seen from as early as 3 months.

In contrast, Aspergers is a personality disorder and the onset of these symptoms is usually around age 5. The common disorder for Autistic children is typically in the area of poor socialization; while those with Aspergers tend to be much more vocal.

Typically, autistic babies manifest symptoms at a very early age. Autism impacts all aspects of development: emotional, neurological, verbal, and motor. The reason why it is important, even critical, to distinguish early autism and early communication disorders is because the best outcomes come from early intervention with autistic children. It is not that babies with autism can not communicate, rather they do not have the motivation to make sounds or interact with people.

So much inaccuracy in so short a statement. The American Psychiatric Association are about to publish the latest iteration of their diagnostic manual, DSM 5. Are they really so wrong that they have confused a psychosis (autism) and a personality disorder (Aspergers) in one diagnosis – autistic spectrum disorder and called it a neurodevelopmental disorder. Well done iPan for putting me on the same side as the APA.

We began with a news story about a TV presenter and an autism charity. No doubt iPan are well pleased with the publicity arising from Melanie Sykes, a TV presenter who won a charity game show, donating her £50,000 winnings to them. That should cover the treatment costs of at least one child. Melanie is a patron of the charity. She is obviously impressed with the work that they do. Her own son has been through the treatment protocol. It was so effective that in the Daily Mail, Melanie Sykes has said

I have known for five years that he has autism.
‘But I felt it is his business. The thing is he is seven and is about to be officially diagnosed with it.

So, after spending £29,000 on therapy he is about to get his autism diagnosis and his mum recommends iPan to the world. If there was an award for autism quackery Stella Acquarone would be my choice.