False prophets in the ‘crusade against autism’

Before parents embark on dietary treatments for their autistic children, Kenneth Aitken advises in his book Dietary Interventions in Autism Spectrum Disorders that they should consult someone ‘knowledgeable and qualified’ in this field. This would exclude Aitken, who is qualified as a clinical psychologist and has no academic or professional training in nutrition.

This is not the first time that Aitken has reached beyond his area of expertise. After his resignation from his National Health Service (NHS) post in Edinburgh in 1998, Aitken endorsed the campaign linking autism to the measles, mumps and rubella (MMR) vaccine launched by the former Royal Free Hospital researcher Andrew Wakefield. He subsequently published a number of commentaries on issues of vaccine safety and public health, which, as I commented at the time, ‘was surprising’ because he had ‘no professional expertise in any of the relevant disciplines – paediatrics, microbiology or immunology – (indeed he is not medically qualified)’ (see my book MMR and Autism: What Parents Need To Know).

Aitken’s new book makes no mention of his prominent role in the campaign against MMR. Nor does it record his involvement in Action Against Autism, a Scottish anti-immunisation campaign that was re-launched in 2005 as the Autism Treatment Trust and which in 2006 established a private treatment clinic in Edinburgh which lists Aitken as an adviser. Aitken also does not declare that he has been accredited by the Defeat Autism Now! network, a US grouping providing ‘unorthodox biomedical’ interventions in autism. Around one in ten of DAN! practitioners have – like Aitken – been subject to disciplinary measures by their professional bodies (as detailed in my new book Defeating Autism: A Damaging Delusion). Though Dietary Interventions indicates that Aitken is an ‘independent consultant’ based in Edinburgh, it does not make it clear to readers that he derives income from a private practice in which he advises parents on dietary – and other – interventions in autism.

After a cursory survey of diverse fad and specialist diets developed for various conditions over the past century, Aitken propounds his own ‘Simple Restriction Diet’ (no doubt shortly to be dubbed ‘the Aitken Diet’) for children with autism. This turns out to be a synthesis of familiar diets, and not at all simple: Aitken sums it up as ‘the low oxalate, phenol, glutamate, gluten, aspartate, tyramine, casein and Specific Carbohydrate Diet’ or ‘LOPGGATCSCD’ for short. Though Dietary Interventions provides scant details of what this diet entails, any child starting the diet is required to have a number of blood, urine and stool tests and is also required to take a range of vitamins, minerals and supplements (available from named suppliers).

Dr Michael Fitzpatrick’s new book
published by Routledge

Aitken concedes that there is little evidence for the efficacy of any of the diets he discusses and none at all for his own regime. Though small studies have shown some benefit from excluding gluten and casein, the most popular diet for children with autism and incorporated in Aitken’s, the proposed mechanisms of how such diets work (such as the opioid peptide and ‘leaky gut’ theories) have been discredited. But, on the basis of anecdotal reports of benefit from these diets, Aitken argues that ‘we should not be waiting for the research evidence on the minutiae of why they work to come in first’. But the research evidence we are waiting for is not only on the important matter of ‘why’ they work (trivialised by Aitken as ‘minutiae’) but also on the prior, and even more important, question of ‘whether’ they work.

Aitken further justifies his gung-ho – introduce the diet now, do the studies later – approach, by insisting that his dietary methods are ‘largely safe and resource neutral’. But until studies have been done, how does he know his methods are safe? And what does he mean by ‘largely’ safe? His recommended Simple Restriction Diet aims, like familiar ketogenic diets that some studies have shown to be beneficial for children with epilepsy, to induce a state of ‘ketosis’, in which ketones are passed in urine (a state commonly seen in starvation or as a complication of diabetes). Any such diet carries well-recognised long-term and short-term risks, which are ‘largely’ glossed over in this account.

Furthermore, what does Aitken mean by ‘resource neutral’? The Aitken diet will certainly not have neutral resource implications for any family that implements it for their child, remembering that the author insists that it must be continued for at least four, and preferably six, months. Pursuing this diet will involve not only buying the special foods required, but also the costs of the recommended investigations and supplements – not to mention the consultation fees (for ‘assessment, follow-up and support’) with an expert practitioner in this esoteric therapy. Quite apart from the enormous effort involved in pursuing this diet for all the family, the financial cost is likely to amount to several thousand pounds a year.

Aitken’s book has much in common with another Edinburgh product – Richard Lathe’s Autism, Brain and Environment, published in 2006. Formerly an academic neuroscientist, with no record of research in autism, Lathe also reached beyond his sphere of competence (1). Both books comprehensively fulfil Michael Shermer’s characterisation of pseudoscience as ‘claims presented so that they appear scientific even though they lack supporting evidence and plausibility’ (2).

Sally Kirk, author of Hope for the Autism Spectrum: A Mother and Son Journey of Insight and Biomedical Intervention, is the Sarah Palin of autism moms. A proud daughter of the ‘Hoosier state’ of Indiana, she tells us that she moved to the ‘tippy-toe’ of the state to start ‘operation family plan’, producing, after ‘A-OK pregnancies’, three ‘bundles of joy’ and in the fullness of time became the mother of first one teenager (‘yipes’), then two teenagers (‘double yipes’). She tells how one of her sons was diagnosed first with Attention Deficit Hyperactivity Disorder and later with Asperger’s syndrome, and how she struggled with mainstream doctors and medications before discovering unorthodox biomedical interventions. Attributing her son’s ‘major progress’ to these treatments, Kirk provides a detailed guide for other parents (her book runs to over 400 pages).

Kirk provides another example of an author who has no relevant expertise advising parents of autistic children on a wide range of biomedical investigations and treatments. It seems that undergraduate studies in computer science and further researches at the ‘University of Google’, together with personal experience of treating one child (her own son), are all that are required to write what is presented as an authoritative textbook – ‘a useful resource for therapists, medical professionals, teachers and adults with autism spectrum diagnoses’. It is not surprising to discover that, as a full-time mother of three demanding boys, Kirk has little time for research and that her account is heavily dependent on a narrow range of sources – notably the writings of a handful of leading practitioners in the Defeat Autism Now! network, several of whom provide fulsome endorsements of this text.

Kirk offers ill-informed discussions of a range of controversies surrounding the epidemiology, genetics and causation of autism. Here is just one example: a paragraph on the MMR-autism link (on page 363 of her book) in which not a single sentence is accurate.

‘A pediatric gastroenterologist in England, Andrew Wakefield, MD, published a study in 1998 which has embroiled him in controversy ever since.’

Wakefield is not a paediatrician, or a gastroenterologist, nor does he have an MD. He qualified as a surgeon and was an academic researcher in the adult department of gastroenterology at the Royal Free Hospital when his 1998 paper was published. It is true that the Royal Free is in England.

‘He found measles virus in biopsies taken from the inflamed intestines of children with regressive autism.’

The 1998 paper contains no results of investigations for measles virus in intestinal biopsies (though it indicates that such studies ‘are underway’). According to testimony at the Omnibus Autism proceedings in Washington in summer 2007, Nicholas Chadwick, then a postgraduate student at the Royal Free, had completed investigations for measles virus on Wakefield’s cases. Because these were all negative, Wakefield had refused to include them in the published paper (and Chadwick insisted that his name be withdrawn from it). In two papers published in 2000, Wakefield and Dublin-based pathologist John O’Leary claimed to have identified measles virus in a high proportion of these cases. These claims were widely disputed by virologists and comprehensively dismissed in further evidence given in the Omnibus Autism proceedings by London microbiologist Stephen Bustin, based on his study of the O’Leary lab. Bustin’s devastating critique has been summarised in a recent article (3).

‘Based on viral DNA comparisons, Dr Wakefield believed the smouldering measles infections he found in these children was a unique disease process resulting from the MMR’s live virus.’

As measles is an RNA virus, detecting DNA would confirm contamination – a point made by Stephen Bustin in his Washington testimony. It is clear that Wakefield believed, with the force of religious conviction, that ‘smouldering measles infections’ caused a ‘unique disease process’ in children with autism. But his 1998 paper contains no evidence for this (having excluded evidence to the contrary) and his 2000 papers with O’Leary presented evidence that has been discredited.

‘Since Dr Wakefield’s initial study, numerous laboratory and clinical studies have emerged that support his findings.’

This is the opposite of the truth. Independent authoritative studies with lead authors Afzal, D’Souza, Baird and, most recently, Hornig, have failed to confirm Wakefield’s hypothesis. Studies supporting Wakefield have come from past or present colleagues or collaborators (Bradstreet, Krigsman, Walker) and have appeared in ‘vanity-published’ journals or have not been published at all (see Defeating Autism: A Damaging Delusion, p94-98).

The books by Aitken, Lathe and Kirk are given legitimacy by being published by Jessica Kingsley, Britain’s leading publisher of popular autism titles. In all three, authors lacking in relevant qualifications and expertise provide pseudoscientific justifications for treatments not supported by scientific evidence. They encourage parents to implement interventions which are very unlikely to benefit their children, may cause them harm and will certainly impose a heavy burden – in dashed hopes even more than wasted money – on the whole family. One child has already died as a direct consequence of unorthodox treatments (see Defeating Autism: A Damaging Delusion, p1-13). Many more will suffer if the anti-immunisation prejudices nurtured by these authors result in further outbreaks of measles and other preventable diseases.

In striking contrast with the above authors, Paul Offit, author of Autism’s False Prophets: Bad Science, Risky Medicine and the Search for a Cure, is highly qualified to write on theories linking autism to vaccines and the associated ‘unorthodox biomedical’ treatments. Offit is a paediatrician and the Maurice R Hilleman professor of vaccinology at the University of Pennsylvania School of Medicine. His last book was a biography of the extraordinary Hilleman, who personally pioneered the development of, not only MMR, but of six other now commonly used vaccines (4). In his latest book he provides a comprehensive survey of the evolution of the vaccine/autism controversy in the USA and of the ‘false prophets’ who ‘offer parents hope for an immediate cure’ as well as ‘the lawyers, journalists and politicians who support them’.

Autism’s False Prophets illuminates many key episodes, such as the 1999 decision by US immunisation authorities to remove the mercury-based preservative thimerosal from vaccines. Though thimerosal had been used to prevent bacterial contamination without ill-effect for more than half a century, campaigners had come to blame the higher doses of mercury contained in increasing numbers of childhood immunisations for the apparent increase in diagnoses of autism. Though numerous studies had failed to establish any causative relationship, the authorities deferred to the campaigners and exercised the ‘precautionary principle’ in favour of withdrawing thimerosal. In Offit’s view this was ill-advised: it caused confusion, undermined confidence in the immunisation programme – and failed to reassure the activists. The decision set in motion a sequence of events leading to ‘distrust, litigation, and a handful of new and potentially dangerous therapies for autistic children’.

Offit recognises the important contribution of a growing body of parents and people with autism who reject vaccine/autism theories and their damaging consequences (and he generously acknowledges my book on the MMR controversy). These include Camille Clark who blogs as the ‘Autism Diva’, Kathleen Seidel (‘Neurodiversity’) and Roy Richard Grinker, social anthropologist and author of an influential book debunking the notion of an ‘autism epidemic’ (5). Offit quotes Peter Hotez, a senior parasitologist with an autistic daughter, who is frustrated by the failure of public health officials to ‘stand up for science’ in vaccine controversies and angered at the way self-righteous anti-vaccine activists claim to ‘speak for all autistic parents’, while distracting energies and diverting resources from important issues of service provision.

As Hotez says, the fact that ‘everyone is frightened of these parent groups’ has allowed them undue public influence. It is not surprising to learn that Offit himself has received a sack of hate mail, a barrage of abuse on the internet and threats of litigation. The fact that powerful vested interests are now supporting anti-vaccine and quack treatment campaigns makes it all the more important to extend the links among parents and people with autism, scientists and clinicians, in challenging the bad science and risky medicine of the unorthodox biomedical movement in autism.

Dr Michael Fitzpatrick is author of the new book Defeating Autism: A Damaging Delusion, published by Routledge. (Buy this book from Amazon(UK) or Amazon(USA).)

Books discussed in this essay:

Dietary Interventions in Autism Spectrum Disorders, Kenneth J Aitken, Jessica Kingsley, 2008

Hope for the Autism Spectrum: A Mother and Son Journey of Insight and Biomedical Intervention, Sally Kirk, Jessica Kingsley, 2008

Autism’s False Prophets: Bad Science, Risky Medicine and the Search for a Cure, Paul Offit, Columbia University Press, 2008

Footnotes:

(1) Review of Lathe, R Autism, Brain, Environment, M Fitzpatrick, British Medical Journal 2006; 333: 205

(2) Why People Believe Weird Things: Pseudoscience, Superstition and Other Confusions of our Time, Michael Shermer, Souvenir, 2007

(3) RT-qPCR and molecular diagnostics: no evidence for measles virus in the GI tract of autistic children, Stephen A Bustin, European Pharmaceutical Review 2008; 1:11-17

(4) Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases, Paul Offit, Smithsonian, 2007

(5) Unstrange Minds: A Father Remaps the World of Autism, Roy Richard Grinker, Icon 2008