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.