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The perils of reading history backwards: John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

20 May

John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

Hard on the heels of Steve Silberman’s award winning Neurotribes comes another grand scale history of autism, at 688 pages, even exceeding the 544 pages of its predecessor. (See

The books have much in common: both are written by journalists with an eye for story and character. Both provide comprehensive accounts of the clinical and scientific advances of the past half century, and offer sketches of key figures on both sides of the Atlantic. They cover issues of institutionalisation and de-institutionalisation, parental campaigns (challenging professionals and bureaucrats to raise awareness, provide education and social support), and controversies (over causation, diagnostic labels, treatments, interventions and ‘cures’) and the new wave of internet-facilitated activism by adult autistics.

These histories also share common weaknesses.* Apart from their inordinate length, the narratives are often poorly organised and tend to favour description over analysis – Donvan and Zucker seem particularly reluctant to make judgements on the contribution of authorities or draw conclusions in relation to controversies. For example, in their discussion of the late Ivar Lovaas, the pioneer of ‘applied behaviour analysis’, they criticise his use of ‘aversive’ punishments to reinforce changes in behaviour – though such methods were commonplace in homes throughout the Western world up to the 1980s – and they also recycle gossip about his womanising. But they fail to provide any answers to the questions about whether modern developments of these techniques are legitimate or effective in teaching children with autism.

The authors’ proclivity for retrospective moral judgements (also a feature of Silberman’s book) gets them into murkier waters in their accounts of the work of the two authorities who first advanced the label ‘autism’ in the 1940s – Leo Kanner in the USA and Hans Asperger in Austria. From a perspective that assumes a contemporary state of enlightenment, they adopt a distinctly sanctimonious posture towards the prejudices of the past, notably in relation to issues of sexuality and race, as well as diverse forms of disability and difference, where cultural attitudes have changed dramatically over recent decades. Their criticisms of both Kanner and Asperger for their accommodations to the doctrines of eugenics fail to take account of the strength of the scientific and medical consensus supporting these theories in the first half of the twentieth century. They also seem to have little sense of the mass psychosis into which Germany and Austria in general and the medical profession in particular had descended in the period of the Third Reich. (See Robert Jay Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide, 1986 and Saskia Baron, Science and the Swastika: The Deadly Experiment; Science and the Swastika: Hitler’s Biological Soldiers,

Donvan and Zucker are critical of Kanner for his approval of the sterilisation of individuals with severe learning disabilities (such procedures were carried out on a larger scale in the USA than in Germany prior to the Nazi period), even though he opposed a proposal for euthanasia, made in a leading psychiatric journal, in 1942. In relation to Asperger, In A Different Key repeats allegations made by the Austrian historian Herwig Czech in a 2010 lecture, that he made excessive compromises with the Nazi Party and was complicit in the killing of children with severe disabilities in wartime Vienna. The main problem with these allegations is that they have only the status of hearsay – though it is five years since Czech’s lecture, his evidence has not yet been published in a form which allows other authorities to scrutinise his claims and decide on their authenticity. An additional problem is that the authors fail to draw out the consequences for our evaluation of Asperger’s work, and the status of his eponymous syndrome.

Donvan and Zucker begin and end their history of autism with the story of Donald Triplett, ‘Case 1’ in Kanner’s 1943 paper that launched the diagnosis of autism into the world. Now in his early eighties, Donald is still living in his family house (though his parents are long dead) in the small town of Forest, Mississippi, where he enjoys a good quality of life in a sympathetic and supportive community. It is a heart-warming story – already told by the authors in an article in The Atlantic in 2010 (and also included in Silberman’s book) – and it reflects significant progress in the understanding and acceptance of autism over the course of Donald’s lifetime. Unfortunately, such positive outcomes are far from universal, either in the USA or in Britain, where almost every day brings new stories of people with autism suffering from mental health problems and from neglect or ill-treatment in the context of grossly inadequate therapeutic and social care services. (Meng Chuan-Lai, Simon Baron-Cohen, Identifying the lost generation of adults with autistic spectrum conditions, Lancet Psychiatry 2015; 2: 1013–27.) A recent report from Scandinavia confirms dramatically higher rates of mortality, affecting individuals across the autistic spectrum, from a wide range of medical causes, epilepsy and suicide linked to mental health problems. (Tatja Hirvikoski, et al, Premature Mortality in Autistic Spectrum Disorders, British Journal of Psychiatry, 20 November 2015, DOI: 10.1192/bjp/114.160.192).

In his thoughtful and challenging survey of the politics of identity associated with diverse forms of disability, Andrew Solomon comments on the particularly ‘polarised and fragmented’ autism community. (Andrew Solomon, Far From the Tree: parents, children and the search for identity, 2012). He contrasts this with the sphere of deafness, in which ‘medicine and activism are galloping’ – whilst in autism ‘both are trudging’. Whereas, in other forms of disability, medical advances have led to a decline in prevalence and severity, in autism, prevalence has risen apparently inexorably – in the absence of any significant advance in terms of therapeutic intervention. Though Donvan and Zucker, like Silberman, have made a valuable contribution in recording the key events in the rise of autism over the past half century, this particular chronicle still awaits rigorous historical analysis.

Michael Fitzpatrick 7 February 2016

*One is an occasional inaccuracy: Nikolas Tinbergen, associated with ‘holding therapy’, was an ethologist – not an ‘ornithologist’; Andrew Wakefield did not, in his notorious 1998 Lancet paper, report ‘traces of measles virus in the intestinal tracts’ of children with autism.



The inhumanity of shamanic healing

26 Jun

The inhumanity of shamanic healing

‘Laurens van der Post meets Crocodile Dundee’ – Michael Fitzpatrick on Rupert Isaacson and his Horse Boy Method, the latest miracle healing programme for autism.

Rupert Isaacson, The Horse Boy: A Father’s Miraculous Journey to Heal His Son, Penguin 2009.

Michel Orion Scott (director), Rupert Isaacson (producer), The Horse Boy, DVD, 2010.

Rupert Isaacson, The Long Ride Home: The Extraordinary Journey of Healing that Changed a Child’s Life, Penguin 2014.

It was a shock to sit in a fashionable North London bar with an audience watching – without evident protest – a film scene in which the mother of a boy with autism ritually cleanses her genital area with ‘holy vodkha’ on the instruction of a shaman in deepest Mongolia. It is even more shocking to watch as six-year-old Rowan is subjected to what a sympathetic journalist who accompanied the family on their trip to Mongolia describes as ‘what looks to an outsider like child abuse’ (Tim Rayment, ‘The quest for a miracle cure’, Sunday Times 9 September 2007). Rowan is ‘whipped by a shaman – an intermediary between the natural and spirit worlds – and force-fed milk, then held under a noisy drum.’ He undergoes a dramatic behavioural regression: ‘He loses his language and starts to babble. He screams uncontrollably at the sound of a cow, assaults a little Mongolian girl, and bites his father. Getting the distressed child to the ‘sacred waters’- the ‘brain spring’ – means wrestling him there.’ (The film shows only a discreetly-edited version of these events, focusing on the whipping received by Rowan’s parents, film-maker and author Rupert Isaacson and psychologist Kristin Neff, though there is a more detailed account in Isaacson’s books).

When, in the Q&A following the film, I ventured to agree with Tim Rayment’s assessment that this did indeed ‘look like child abuse’, Isaacson responded angrily. He claimed that as a father he had merely followed his son’s lead – and urged other parents of children with autism that they should do the same. But – and this is one of several evident contradictions in Isaacson’s approach – it is clear that, though his son may have shown a spontaneous interest in horses, the initiative to subject Rowan to shamanic healing came entirely from his father.

Isaacson’s latest book records how, since the trip to Mongolia, he has subsequently taken Rowan through similar rituals with shamans in remote regions of Namibia, Australia and New Mexico. He has also established a riding school at his ranch in Texas, offering the ‘Horse Boy Method’ for children with autism, claiming that this achieves ‘miraculous’ healing results, perhaps not ‘a cure’, but dramatic improvement in symptoms. Here is another contradiction. On the one hand, Isaacson believes that autism is ‘not a problem to be fixed’ but is ‘a wondrous way of being’; on the other hand, he presents it as the result of demonic possession, perhaps a curse from his enemies (made during his earlier work as a human rights activist in Africa), or the malign influence of ancestors (perhaps Kristin’s mentally ill grandmother – hence the vodkha douche). For Isaacson, autism is a state of superior enlightenment and special gifts, but it is also a manifestation of ‘black energy’ – evil spirits that require exorcism.

Rupert Isaacson emerges as a father deeply committed to his son, but struggling to cope with the challenges of autism. He is particularly troubled by the difficulties in toilet-training Rowan, by his recurrent tantrums and by his social disengagement. He is unsparing in his account of the day-to-day difficulties of family life with an autistic child (Rowan is now 12) and the strains this imposes on all the family. But though he asks himself some good questions, he lacks the insight to come up with the obvious answers. Thus – ‘how could I be sure this was not all just New Age nonsense on my part?’, ‘Was I a complete fool for doing this – just on some kind of ego trip, and not doing this for Rowan at all?’ and (my favourite, his reflection on the demand from the Chairman of the Shaman’s Association of Mongolia for $125 each for the services of nine shamans) ‘Had I fallen into a nest of charlatans?’ As another hapless father might put it, ‘D’oh!’

As the father of an autistic son, I have no doubt that horse-riding can be a highly enjoyable and beneficial activity for people with autism. It combines physical exertion in the outdoors and interaction with both horses and people in a way that can enhance mood, improve behaviour, encourage sociability. Though we have never succeeded in getting our son on a horse (he refuses to wear any sort of hard hat), we have, like many parents, found much benefit from cycling (with an improvised saddle in a similar position to that used by the Horse Boy) and from trampolining. These activities are considerably cheaper and more accessible for most families than horse-riding – and they do not require any specialist training or expertise. I cannot see any advantage in dignifying these simple activities as ‘bicycle or trampoline therapy’ or any justification for making extravagant claims for their ‘miraculous’ healing powers.

While Isaacson’s claims for horsey-healing are fanciful, his promotion of shamanic exorcism is more worrying. He returns to primitive notions that developmental disorders are the result of evil spirits, the responsibility of malign forces or dead ancestors – or even of parents who must subject themselves to rituals of purification and mortification. Most of the rituals he describes are the familiar theatrical displays of scary masks, trance dancing, chanting and drumming, laying on hands, sucking bones and spitting out fluids. But there can be no justification for subjecting an autistic child to the sort of inhuman and degrading treatment described in his account. Nor can this ill-treatment be justified by the claims that Isaacson makes in relation to Rowan – that these rituals were followed by improvement in his toileting, his tantrums and his sociability. My son made similar improvements as he got older, without exposure to horses or shamans, as have many autistic children.

In his promotion of the cult of the primitive, Isaacson combines elements of Laurens van der Post and Crocodile Dundee. But, as the libertarian anarchist Murray Bookchin observes, this sort of retreat from into mysticism ‘is no trivial matter’: ‘It took thousands of years for humanity to begin to shake off the accumulated “intuitions” of shamans, priests, monarchs, warriors, patriarchs, dictators and the like – all of whom claimed immense privileges for themselves and inflicted terrible horrors on their inferiors on the basis of their “intuited”wisdom”.’ (Murray Bookchin, Re-enchanting Humanity: A Defence of the Human Spirit Against Anti-Humanism, Misanthropy, Mysticism and Primitivism, Cassell, 1995, p98.)

The warm applause for the Horse Boy film in North London reflects the enthusiastic reception received by Isaacson in the British press, where he has won something of a fan club: ‘With his long blond hair, biker jacket and distressed jeans [Isaacson] looks like a surf dude’ (Liz Hunt, Daily Telegraph, 6 March 2009) ‘With his flowing blond locks, [Isaacson] looks like a veteran of a 1980s rock band’ (Jessie Hewitson, The Times, 2 December 2012).

This reminded me of ‘a handsome, glossy-haired, charismatic hero to families of autistic children in this country and America’ (Justine Picardie, Telegraph Magazine, 8 June 2002) – a description of Andrew Wakefield, the former Royal Free gastroenterology researcher whose fraudulent research claiming a link between the MMR vaccine and autism did so much harm a decade ago. (It is scarcely surprising to discover that Isaacson endorses Wakefield – now a neighbour in Austin, Texas since he was struck off the medical register in the UK.)

Back in 2002, Picardie suggested that Russell Crowe could play Wakefield in a movie version of the MMR story; in the event Wakefield fans had to settle for Hugh Bonneville in the 2003 Channel 5 drama Hear the Silence. Now that Isaacson is planning a Hollywood remake of his film, he favours Robert Downie Jnr to play himself in the starring role. Given the popularity in the American cinema of sentimental voyeurism in relation to autism and cosmopolitan condescension in relation to aboriginal societies, the film seems destined for the Oscars. The only losers will be people with autism who will continue to be the object of atavistic fantasies and the targets of promoters of miracle cures.

Michael Fitzpatrick is the author of MMR and Autism: What Parents Need To Know (2004) and Defeating Autism: A Damaging Delusion (2009).

Wakefield dodges debate – again

9 Jun

The following comment was submitted to the Age of Autism blog but not approved:

Dr Wakefield is being disingenuous. In an earlier video posted on Age of Autism, he offered to debate the MMR-autism link ‘with any serious contender’. In an article published in the online magazine 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.

Michael Fitzpatrick 6 June 2013

Two steps forward, one step back

21 May

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.

Treating Autism, with an address in Bow, East London, and the Autism Treatment Trust, based in Edinburgh, have circulated ‘advocates and organisations involved in the care of patients with Autism Spectrum Disorder’ with 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 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 in 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 the 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 book (The Autism Revolution, p103). This is progress indeed.

The TA/ATT focus on ‘medical co-morbidities’ – conditions, such as sleep disorders, gastro-intestinal disturbances and epilepsy, that may co-exist 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’. 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 USA. (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 Knowand Defeating 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 ( 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: 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% 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 attenders 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 USA, 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 USA and the UK) is discussed in Defeating Autism (pp 114-115). 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 USA in 2009. (See: 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, pp19-22), 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 that she will take advantage of her place on the Edinburgh platform to remind attendees (and fellow speakers) of this judgement from her book:

‘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.’ (The Autism Revolution, p65)

Michael Fitzpatrick 21 May 2013

Studies ‘supporting’ Andrew Wakefield

7 May

It is 15 years since Andrew Wakefield first hypothesised a link between the MMR vaccine and autism in children, mediated by an inflammatory bowel condition (subsequently labelled ‘autistic entercolitis’). Over this period Dr Wakefield and his supporters have cited a range of studies which are claimed to ‘verify’, ‘replicate’ or ‘support’ his MMR-autism theory. Here is the most recent list:

‘Here is a list of 28 studies from around the world that support Dr. Wakefield’s research:
1.The Journal of Pediatrics November 1999; 135(5):559-63
2.The Journal of Pediatrics 2000; 138(3): 366-372
3.Journal of Clinical Immunology November 2003; 23(6): 504-517
4.Journal of Neuroimmunology 2005
5.Brain, Behavior and Immunity 1993; 7: 97-103
6.Pediatric Neurology 2003; 28(4): 1-3
7.Neuropsychobiology 2005; 51:77-85
8.The Journal of Pediatrics May 2005;146(5):605-10
9.Autism Insights 2009; 1: 1-11
10.Canadian Journal of Gastroenterology February 2009; 23(2): 95-98
11.Annals of Clinical Psychiatry 2009:21(3): 148-161
12.Journal of Child Neurology June 29, 2009; 000:1-6
13.Journal of Autism and Developmental Disorders March 2009;39(3):405-13
14.Medical Hypotheses August 1998;51:133-144.
15.Journal of Child Neurology July 2000; ;15(7):429-35
16.Lancet. 1972;2:883–884.
17.Journal of Autism and Childhood Schizophrenia January-March 1971;1:48-62
18.Journal of Pediatrics March 2001;138:366-372.
19.Molecular Psychiatry 2002;7:375-382.
20.American Journal of Gastroenterolgy April 2004;598-605.
21.Journal of Clinical Immunology November 2003;23:504-517.
22.Neuroimmunology April 2006;173(1-2):126-34.
23.Prog. Neuropsychopharmacol Biol. Psychiatry December 30 2006;30:1472-1477.
24.Clinical Infectious Diseases September 1 2002;35(Suppl 1):S6-S16
25.Applied and Environmental Microbiology, 2004;70(11):6459-6465
26.Journal of Medical Microbiology October 2005;54:987-991
27.Archivosvenezolanos de puericultura y pediatría 2006; Vol 69 (1): 19-25.
28.Gastroenterology. 2005:128 (Suppl 2);Abstract-303

Which of these studies supports a link between MMR and autism? None of them. Which studies support a link between MMR and inflammatory bowel disease? None. In fact, none of these studies focuses on MMR: the term ‘MMR’ is not included in any of the titles.

One study (no 6) by Vijendra Singh, published in 2003, claims a link between measles virus and autism. According to virologists in London, Singh’s methodology was suspect and the evidence for the specific ‘anti-MMR’ antibody he identified was ‘not credible’(see Michael Fitzpatrick, MMR and Autism: What Parents Need To Know, p90).

Several studies claim to show an association between ‘autistic enterocolitis’ and autism. Of these (nos2, 3, 4, 9, 18, 19, 28) all but two feature Dr Wakefield as a co-author. Study no 9 is the work of Wakefield collaborators Arthur Krigsman and Carol Stott, published in a journal whose editors include Wakefield and Stott. Study no 28 is the work of Wakefield’s former Royal Free colleague Federico Balzola. The study by Dr Lenny Gonzalez, (no 27) a former collaborator with Wakefield at his Thoughtful House clinic in Texas, published in Venezuela, reports the extraordinary findings of autistic enterocolitis in 100% of 45 children with autism, and in 66.66% of 57 ‘developmentally normal’ controls. Apart from Wakefield and his former or current colleagues, no other researchers in the world have confirmed the existence of ‘autistic enterocolitis’ in children with autism.

Some studies suggest the presence of gastrointestinal disorders other than ‘enterocolitis’ in association with autism. These include upper gastrointestinal conditions, such as gastritis and oesophagitis (no 1, Horvath;no 10, Galiatsatos; no 20, Torrente); coeliac disease or malabsorption (no 12, Genuis;no 16, Walker-Smith;no 17, Goodwin); microbial factors other than measles (nos14, 15, 24, 25 – the Finegold, Bolte, Sandler team; and no 26 –Parracho and colleagues at Reading). Most of these studies feature small numbers of cases and two (nos 16,17) were published more than 40 years ago.In study no 10, Polymnia Galiatsatos and colleagues in Montreal, Canada report the cases of two young adults, one with colonic inflammation, the other with gastritis. Nikolov and colleagues at Yale(no 13) simply report on ‘gastrointestinal symptoms’ in association with autism.

Other studies suggest immune or autoimmune dysfunction in association with autism: Jyonuchi (nos7,8) and Singh (nos5,11). One study (no 23, Shinohe) focuses on abnormal glutamate metabolism in adults with autistic spectrum disorders. These studies do nothing to advance the vaccine-autism hypothesis.

Given that supporters of Dr Wakefield often claim that his work has been ‘independently’ replicated, it is worth pointing out that Wakefield himself is a co-author on a quarter of the studies listed here (2,3,4, 18,19, 21,22). Others (9, 20, 27,28) feature former Royal Free team members(Ashwood, Torrente, Furlano, Balzola), or subsequent collaborators (Krigsman, Stott, Gonzalez).
Those who, like me, have been following this sad story over the past 15 years, will have noticed that several authorities formerly cited in support of Wakefield’s theory seem to have fallen by the wayside.

In the early days of the MMR controversy, Wakefield often cited the studies of Rosemary Waring and Patricia D’Eufemia in support of his notion of a ‘leaky bowel’. His colleague John Walker-Smith claimed that a letter from Aderbal Sabra published in the Lancet in 1998 (about children with food allergies and ADHD) provided a ‘great public vindication’ of the work of the Royal Free team (see MMR and Autism, p143-4). Tokyo physician Hishashi Kawashima’s claims to have identified measles virus in children with autism were widely promoted – but soon discredited. In Sunderland, retired pharmacy lecturer Paul Shattock, an ardent Wakefield supporter, attracted widespread publicity for his claims to have identified distinctive urinary peptides linking MMR and autism, but his research was never published.

The most widely cited research supposedly supporting Wakefield came from his Dublin collaborator John O’Leary (published in 2002 in separate papers with Uhlmann and Shiels). This was discredited by the evidence of Stephen Bustin in the Omnibus Autism Proceedings in the USA in 2009 (see Stephen A Bustin, Why There Is no Link Between Measles Virus and Autism, DOI: 10.5772/52844).
Another study by Balzola, based on the use of the technique of ‘capsule endoscopy’ in a single (adult) case has also been dropped. It was rapidly followed by a report from another member of his team of ‘acute small bowel perforation secondary to capsule endoscopy’.

Other forgotten Wakefield supporters are the South Carolina immunologist Hugh Fudenberg, and the Florida preacher and vitamin salesman Jeffrey Bradstreet, whose dubious practices were exposed in Brian Deer’s Channel Four documentary in 2004. The father and son team of Mark and David Geier, notorious for their promotion of the ‘Lupron protocol’ of chemical castration and heavy metal chelation as a treatment for autism as well as for their shoddy researches, have also been dropped from the list of supportive researchers.

Another widely quoted ‘study’ supposedly supporting Wakefield was a poster presentation by Stephen Walker (working in collaboration with long-standing Wakefield ally Arthur Krigsman) at the IMFAR meeting in Montreal in 2006.These preliminary, provisional, unconfirmed, non-peer-reviewed findings – of measles virus in bowel biopsy specimens – in an uncontrolled study (which does not mention MMR) were widely reported – and enthusiastically acclaimed by Dr Wakefield. Walker himself disclaimed the interpretation that his work supported any link between measles and autism. This study has never been published.

In conclusion, after 15 years, we are offered 28 studies, none of which supports the MMR-enterocolitis-autism hypothesis. It is not surprising that over this period Wakefield has failed to win the support of a single paediatrician, paediatric gastroenterologist, child psychiatrist or autism specialist in England. Surely it is time to call a halt?

By Michael Fitzpatrick

Andrew Wakefield and Vaccine Safety

30 Apr

All about Andy

Even if everything Andrew Wakefield says about the safety of MMR were true it would still not advance the claim that it causes autism.

Having failed, over the past 15 years, to come up with evidence for his theory of a link between the MMR vaccine and autism (or even for his original claim of a link between measles virus and inflammatory bowel disease), Andrew Wakefield has resorted to making wider (and wilder) claims about the safety of MMR. Moving away from his former field of academic gastroenterology, Wakefield has embarked upon studies in paediatrics, vaccinology and public health. These are spheres in which he has neither expertise nor experience – and it shows. He has alleged that surveys associated with the introduction of MMR in Britain 25 years ago were methodologically inadequate, too small in scale, too short in duration or otherwise unsatisfactory. He claims that evidence of adverse reactions was suppressed, conflicts of interests among public health authorities were undisclosed and whistleblowers were silenced. Critics of the programme are alleged to have had their phones tapped, their homes burgled and to have been persecuted by the medical/political/pharmaceutical establishment. Most recently Wakefield has claimed that procedures for dealing with potential anaphylactic reactions within the MMR programme were inadequate.

I do not intend to revisit here the case against Wakefield’s claims about the safety of MMR which is presented in my book MMR and Autism: What Parents Need To Know. (1)On the red-herring of anaphylaxis, including a report of a curiously high incidence in association with separate measles vaccine in a private clinic, see these studies. (2,3,4) Here I would like to pose three questions that arise for anybody who accepts his allegations about the introduction of MMR in Britain after 1988.

1. What about the other countries in which MMR has been introduced?

Surely, if there are significant dangers associated with MMR – which were supposedly ignored in Britain – these would have been noticed in the 60 countries in which the vaccine has been introduced (both before and after 1988)? In fact, the excellent safety record of MMR – 500 million doses and counting – is a major reason for its successful worldwide use. Several countries in Europe and the Americas have been able to declare measles eradicated, apparently without experiencing the sort of adverse effects Wakefield and anti-vaccine campaigners have attributed to MMR in Britain. Indeed, even if public health authorities had succeeded in suppressing reports of adverse reactions to MMR 20 or 25 years ago, these must surely have become apparent by now?

2. Did MMR not dramatically reduce the incidence of mumps meningitis (even if one strain of the vaccine caused a small number of cases)?\

One of the recurring complaints of Wakefield and his supporters is that in the early years of the programme, British vaccine authorities used a brand of MMR including a strain of the mumps virus (Urabe), which was associated with a small number of cases of meningitis, a recognised complication of mumps. In 1992 this was replaced by another strain (Jeryl Lynn) which does not cause this problem. However, if the Jeryl Lynn strain had not been available, it would still have been preferable to carry on with the MMR including Urabe because the benefit of dramatically reducing the incidence of mumps (in the 1980s the commonest cause of viral meningitis) far exceeded the risk of vaccine-related meningitis. A judgement of this sort was made for many years in relation to the use of the oral polio vaccine which caused a handful of cases of polio every year (until it was finally replaced by the currently used injected polio vaccine, which does not carry this risk).

3. Even if MMR is shown to be unsafe in general, how does this support the specific claim that it causes autism?

Wakefield’s strategy appears to be that, if the safety of MMR in general can be put in doubt, the credibility of any particular risk attributed to the vaccine is raised. In reality, this strategy merely draws attention to his failure – over 15 years – to produce any evidence in support of the MMR-autism theory.

Given his failure to substantiate the MMR-autism hypothesis, Wakefield’s persistence in his campaign against MMR has acquired an increasingly irrational character, confirmed by his bizarre video diatribes against leading figures associated with the MMR programme. He is still bitterly aggrieved that British authorities did not accede to his preposterous demand (issued at the notorious 1998 press conference to launch his now retracted Lancet paper) for the replacement of MMR with separate vaccines given 12 months apart. Not a single member of his own team supported this proposal, which was not included in the paper and was in no way supported by it. Such a scheme has never been implemented in any country. Wakefield is further incensed that vaccine authorities insisted on upholding the integrity of the MMR programme in face of his proposal.

If Wakefield had any experience of child health he might have a better understanding of the importance of the organisation of a vaccine programme. Before the introduction of MMR, a measles vaccine had been available in Britain for 20 years, but its administration was unsystematic, uptake remained unsatisfactory and outbreaks continued to occur. In a similar way, rubella vaccine had been given to schoolgirls with considerable success, but occasional cases of congenital rubella were still reported. Mumps vaccine had never been made widely available and cases were seen commonly in surgeries and hospitals. The introduction of the new combined MMR vaccine – within a comprehensive administrative framework, inviting parents into clinics when their children’s jabs were due, properly recording them – brought within a few years a dramatic improvement in children’s health.

If Wakefield had seen, as I have, children suffering from measles, or if he had admitted children to hospital, as I have, with mumps meningitis, or if he had cared for adults with the multiple handicaps of the congenital rubella syndrome, as I have, he might not be so casually disparaging of the MMR programme. But, unfortunately, for Wakefield it is all about Andy and his petty personal grudges against the vaccine authorities who have quite properly put children’s health before his combination of bad science and egotism.

Now, what about that debate?

1. Michael Fitzpatrick, MMR and Autism: What Parents Need To Know, Routledge 2004; p 128-133.
2. Lakshman R, Finn A (2000). MMR vaccine and allergy, Arch Dis Child 2000;82:93-95 doi:10.1136/adc.82.2.93.
3. Erlewyn-Lajeunesse M, Manek R, Lingam R, Finn A, Emond A (2008). Anaphylaxis following single component measles and rubella immunization, Arch Dis Child 2008; 93:974-975. doi:10.1136/adc.2008.138289;
4. Erlewyn-Lajeunesse M, Hunt LP, Heath PT, FinnA (2011). Anaphylaxis as an adverse event following immunisation in the UK and Ireland, Arch Dis Child 2011; doi:10.1136/archdischild-2011-301163.

By Michael Fitzpatrick

A few points about Steve Walker’s measles/autism study

30 Apr

Michael Fitzpatrick is a general practitioner and autism parent in the U.K. who has been countering misinformation for over a decade. His books include Defeating Autism: A Damaging Delusion and MMR and Autism: What Parents Need to Know. Dr. Fitzpatrick offered to take Andrew Wakefield’s recent challenge for a public debate. Mr. Wakefield has not responded.

One report of a replication of key finding by Andrew Wakefield’s team was presented at an IMFAR conference in 2006but never published. Even though it has not been published, and has in fact failed to replicate, that work by Steve Walker is often cited by Mr. Wakefield’s supporters.

Below are a series of points Dr. Fitzpatrick has collected in regards to the Walker study.

Matt Carey

‘It [the Children’s Immunisation Centre – offering single measles vaccines] argues that the MMR vaccine can cause autism, saying: ‘In 2009 a Dr Walker in the USA studied 275 autistic children and found in a large percentage of cases that these children had the live measles virus in their gut after vaccination with the triple MMR’.Sunday Times, 21 April 2013.

1. In 2006 Dr Stephen Walker presented a poster at the Montreal IMFAR meeting claiming to have identified measles virus in intestinal biopsies of children with autism. These preliminary, provisional, unconfirmed, non-peer-reviewed findings in an uncontrolled study (which does not mention MMR) were widely reported – and enthusiastically acclaimed by Dr Andrew Wakefield.

2. In a subsequent statement issued by Wake Forest University Baptist Medical Center in North Carolina, Walker denied that he had shown any link between measles virus and autism.

3. The Walker study has never been published.

4. The Walker study was dismissed as evidence in the 2009 Omnibus Autism Proceedings in the USA after a detailed critique by expert witnesses.

5. The Walker study is not included in a recent list of ‘28 studies from around the world that support Dr Wakefield’s work’ (though none of these validate his claim of a link between MMR and autism).

6. Though reports claimed that the Walker study had ‘replicated’ the work of Wakefield’s Dublin collaborator John O’Leary published in 2002, this work has been thoroughly discredited, most comprehensively by Professor Stephen Bustin (and is no longer even claimed by Wakefield in his support).
(Stephen A Bustin, Why There Is No Link Between Measles Virus and Autism, DOI: 10.5772/52844)

7. A co-author on the 2006 Walker study (and on his recent, unrelated, 2013 publication) is Dr Arthur Krigsman, a long-standing colleague and supporter of Dr Wakefield (and collaborator in his current Autism Media Channel initiative).

Observations on Dr Krigsman by the ‘Special Masters’ in the Omnibus Autism Proceedings 2009:

‘After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment.’

Dr Krigsman appeared as both expert witness and as ‘treating physician’ to Michelle Cedillo and Colten Snyder. The special masters found that his credentials were ‘scant’ and noted that though he claimed to be ‘assistant clinical professor’ at New York University he had never taught there. His four publications were reduced on inquiry to one. It emerged that he left New York following disciplinary action at his former hospital and was fined $5,000 on arrival in Texas for misrepresenting his registration status.
The special masters were not impressed by Dr Krigsman’s performance as an expert witness. Hastings commented that in the Cedillo case he ‘did not find Dr Krigsman to be an expert upon whom I could reasonably rely for sound opinion and judgment’.

It was in relation to his personal testimony as Michelle’s doctor that Hastings found Dr Krigsman to be most ‘unpersuasive’ and of ‘doubtful credibility’. He was shocked to discover that he had ‘presented an opinion concerning Michelle’s case either without examining Michelle’s medical records at all, or after badly misreading these records’. He noted that Dr Krigsman had ‘diagnosed Michelle with “inflammatory bowel disease” in July of 2003, before he had even met and examined her’. Hastings further noted that ‘Dr Krigsman seems highly inclined to diagnose the presence of gastrointestinal inflammation on the basis of almost any chronic gastrointestinal symptoms’. He concluded that Dr Krigsman had advanced a ‘grossly mistaken understanding of Michelle’s gastrointestinal symptoms’ and that ‘a simple reading of Michelle’s medical records demonstrates that Dr Krigsman’s understanding was clearly wrong’. Michelle endured five upper gastrointestinal endoscopies and three lower gastrointestinal endoscopies, none of which in the opinion of the respondent’s experts, revealed inflammatory bowel disease.

Michael Fitzpatrick 23 April 2013