On MMR and autism: one step forward, two steps back
Unorthodox autism campaign groups are finally distancing themselves from the MMR theory. Sadly, they’ve embraced other cranky theories.
Good News: British groups supporting unorthodox biomedical approaches to autism are distancing themselves from theories attributing autism to vaccines.
Bad News: These groups are still promoting treatments – such as stem cell therapies – for which there is no coherent scientific rationale and no good evidence of efficacy or safety.
The group Treating Autism (TA), with an address in Bow, east London, and the Autism Treatment Trust (ATT), based in Edinburgh, have circulated among ‘advocates and organisations involved in the care of patients with Autism Spectrum Disorder’ a package including a (curiously anonymous) ‘scientific review’ entitled ‘Medical Comorbidities in Autism Spectrum Disorder’, a flyer for a conference in Edinburgh in June entitled ‘Changing the Course of Autism: The Science and Intervention’, and a complimentary copy of The Autism Revolution: Whole Body Strategies for Making Life All It Can Be, by the American paediatric neurologist Martha Herbert.
The most striking – and most welcome – feature of this package is that it contains no mention of the cause with which both these groups have been most closely associated over the past decade: the campaign claiming a link between childhood immunisations, particularly MMR, and autism. Bill Welsh, former property developer and president of the ATT and of its predecessor Action Against Autism, has been a leading figure in the anti-vaccine campaign in Scotland since 1998. Wakefield himself was a platform speaker at Treating Autism’s first two conferences, in 2007 and 2009, and TA members were prominent in the protests in support of Wakefield outside the General Medical Council (GMC) when he was struck off the medical register in 2010.
In relation to the current TA/ATT package, MMR is, like the dog that did not bark in the night, significant by its absence. It might be too much to expect that these groups would acknowledge the harm that the anti-MMR campaign has caused to families affected by autism (particularly in encouraging so many into futile and demoralising litigation) and to child health more widely (confirmed by the recent measles outbreaks). Yet, on a more positive note, Martha Herbert, the keynote speaker at the forthcoming Edinburgh conference, makes the forthright declaration, ‘I strongly encourage vaccination’, in her bookThe Autism Revolution. This is progress indeed.
The TA/ATT focus on ‘medical co-morbidities’ – conditions, such as sleep disorders, gastro-intestinal disturbances and epilepsy, that may coexist with autism – is also a welcome and timely initiative. The ‘scientific review’ draws attention to a number of recent studies that reveal the unsatisfactory standards of medical care experienced by people on the autistic spectrum, highlighting inadequacies in relation to examination, investigation and treatment. It is unfortunate that this review appears to rely largely on North American, Australian or even Middle Eastern sources, and appears to be unaware of the extensive work – both in terms of research and advocacy – carried out by Mencap and others in the UK, in relation to the wider population of people with learning disabilities. This work has been summarised in the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.
It is also unfortunate that the discussion of co-morbidities has a perfunctory character in the TA/ATT review, being largely confined to a brief introduction. The question of medical co-morbidities is subsequently conflated with a quite distinct issue – the author’s claim that recent studies confirm a ‘paradigm shift in our understanding of ASD [Autism Spectrum Disorders]’. From this perspective autism is ‘now increasingly recognised as a whole body disorder, with the core deficits in communication, social interaction, restrictive/stereotypic behaviours that have been attributed to ASD, being surface manifestations of a systemic and complex disease process’. In fact, this is not a new ‘paradigm’, and nor is it ‘increasingly recognised’. It is the familiar dogma promoted by the ‘unorthodox biomedical’ fringe associated since the early 1990s with the (now defunct) Defeat Autism Now! group in the US. (For an account of the emergence of this movement from the ‘metabolic psychiatry’ of the 1960s, and its incorporation of biochemical and immunological theories in the 1970s and 1980s, see my books, MMR and Autism: What Parents Need To Know andDefeating Autism: A Damaging Delusion). The TA/ATT review includes a plethora of references to recent studies claiming to confirm ‘earlier findings of widespread biomedical abnormalities in autism’. On past experience, these claims, based on preliminary laboratory studies or small scale – and often poorly constructed – clinical trials, will turn out to be of dubious significance.
Though the TA/ATT review includes little commentary on interventions, it resorts to selective quotation of mainstream academic sources to provide legitimacy for interventions favoured by unorthodox biomedical practitioners, notably exclusion diets. For example, in relation to the gluten-free, casein-free diet, the author cites a recent authoritative Cochrane systematic review in the following terms: ‘From the existing trial evidence it concluded that “the diet poses no disbenefit or harm” [emphasis in original], and it identified positive effects of this diet relating to improvement in overall autistic traits, social isolation, and overall ability to communicate and interact (Millward et al, 2008).’ This is a significant distortion and misrepresentation of the Cochrane review. (This review does not contain the sentence quoted, but in the discussion section it comments, in relation to two major studies of the GFCF diet (Knivsberg, 2003, Elder et al, 2006), that ‘neither study reported disbenefits including harms and costs of these diets’. The statement presented by the TA/ATT review as the judgement of the Cochrane authors is in fact their (critical) description of the Knivsberg and Elder papers. The Cochrane authors’ categorical conclusion is that ‘we cannot recommend these diets as standard treatments’. Not only is this ignored by the TA/ATT review, it is immediately contradicted by an endorsement of the GFCF diet by Paul Whiteley and Paul Shattock, Britain’s leading advocates of this diet (and of the wider unorthodox biomedical campaign) over the past 20 years.
The TA/ATT offers several highlighted quotations from the recent ‘consensus report on the evaluation, diagnosis and treatment of gastro-intestinal disorders in individuals with ASD’, produced by of the American Academy of Paediatrics (see here). Yet it neglects prominent statements from this report which contradict the approach recommended by the TA/ATT review. For example, echoing the Cochrane review, the AAP concludes that ‘available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free diet as a primary treatment for individuals with ASDs’. Furthermore, it dismisses the sorts of claim made by the TA/ATT review for the significance of various immunological and microbiological factors in relation to autism:
‘A direct cause-and-effect relationship between immune dysfunction and autism has yet to be proven.’
‘The role of gut flora in the pathogenesis of gastro-intestinal disorders in individuals with autism is not well understood.’
The TA/ATT review presents a dozen brief case histories to illustrate its claims – and to demonstrate a 100 per cent success rate from the interventions it recommends. Given the lack of clinical detail – or any information about how these cases were selected – it is impossible to offer any evaluation. However, it is worth noting that in eight of the 12 cases, improvement appeared to follow treatment with antibiotics. The AAP consensus statement observes that ‘it should be noted that empirical antibiotic and antifungal therapy in patients with ASD is not recommended’.
The programme for the Edinburgh conference includes only one speaker on the question of co-morbidities – Dr Daniel Goyal. He is also scheduled to advise attendees on ‘How to Approach Your GP and Paediatrician’. This seems a bold enterprise for a doctor who is qualified as neither a GP nor a paediatrician and whose main experience is in occupational health. His experience in relation to autism appears to have been acquired entirely in private practice, at the Breakspear Clinic in Hertfordshire (recently sanctioned by the GMC over chelation treatment) and at his own Sincere Health ‘nutritional and environmental medicine’ clinic in Harley Street. It is striking that the TA/ATT approach cannot attract the support of a single paediatrician, paediatric gastroenterologist, child psychiatrist or autism specialist working in the National Health Service in the UK.
The most worrying feature of the Edinburgh conference is the prominent place on the platform allotted to Drs Nicola Antonucci and Dario Siniscalco (who are scheduled to give three talks in the course of the weekend). Antonucci, a psychiatrist who acquired training in DAN! therapies in the US, has teamed up with Siniscalco, formerly a pain researcher with a background in chemistry and pharmacology, to provide stem-cell therapy for children with autism at a clinic in Bari in southern Italy. The pseudoscience behind this treatment, now available in the Ukraine, Costa Rica, Mexico, Panama and China as well as Italy (but illegal in the US and the UK), is discussed in my book Defeating Autism. At last year’s Treating Autism conference in London, stem-cell therapy was promoted by Dr Jeffrey Bradstreet, a Florida preacher and vitamin salesman and former colleague of Andrew Wakefield, who was severely chastised for his role as both expert witness and treating physician in the ‘omnibus autism proceedings’ in the US in 2009. (See ‘MMR-autism scare: the truth is out at last’). It is alarming to discover that Antonucci and Siniscalco have collaborated with Bradstreet in various publications.
Whatever my reservations about Martha Herbert’s misanthropic evangelical environmentalism (see Defeating Autism), she offers sound counsel against the use of some of the more dangerous therapies currently popular in the unorthodox biomedical world, notably hyperbaric oxygen and heavy metal chelation. I hope she will take advantage of her place on the Edinburgh platform to remind attendees (and fellow speakers) of this judgement from her bookThe Autism Revolution: ‘Stem-cell therapy is an example of a treatment that does not make biological sense to me for autism, is wildly expensive (in part because it’s not legal in the United States), has made some kids whom I know worse, and carries a high risk of danger. I would avoid it.’
by Dr Michael Fitzpatrick
Dr Wakefield is being disingenuous. In a video posted on the Age of Autism (AoA) website, he offered to debate the MMR-autism link ‘with any serious contender’. In an article published on spiked on 16 April, readily accessible through a link on AoA, I indicated that, as both the parent of an autistic son and as a doctor who has been engaged in this controversy for 15 years, I was prepared to engage in such a debate.
On 17 April, Matt Carey published an article on the Left Brain, Right Brain blog, entitled ‘Mike Fitzpatrick calls Andrew Wakefield’s bluff. Wakefield moves the goalposts’, drawing attention to Dr Wakefield’s apparent switch from being ready to debate ‘any serious contender’ to proposing that he was only prepared to debate with British immunisation chief, Dr David Salisbury.
As Dr Wakefield is well aware, this is a very safe offer because Dr Salisbury has publicly indicated that he will not engage in any debate with Dr Wakefield.
Still receiving no response from Dr Wakefield, I publicly repeated this challenge in a posting on the Left Brain, Right Brain blog on 30 April, under the title ‘Andrew Wakefield: now what about that debate?’.
Given the findings of the General Medical Council inquiry that removed Dr Wakefield’s name from the medical register on the grounds of ‘dishonesty’ and ‘irresponsibility’ in the conduct of his research, doctors and scientists are reluctant to engage in any public discussion with him. Many have advised me against accepting his challenge on these grounds. Yet I recognise that he continues to exert some influence among parents of autistic children. Hence I am prepared to engage in a debate that can only expose his failure, after 15 years, to produce any evidence in support of a link between the MMR vaccine and autism.
Picture by: Anthony Devlin/PA Archive/Press Association Images
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