It’s time to stop this ‘miracle cure’ madness

This is an edited version of a lecture given to a conference on autism at the Royal Society of Medicine, London, on 23 March 2009.

Under the headline ‘Can you ever cure autism? This mother believes her sons have recovered’, the UK Daily Mirror recently told the story of Nina Ltief and her autistic twins, Eli and Christian, aged 7 (1). According to the report, two years ago Nina was finding life with her sons so difficult that she was considering ‘putting them into residential care’. But after discovering the ‘unorthodox biomedical’ approach, which includes a wide range of treatments, including special diets, vitamins and supplements, detoxification and medication with antibiotics, antifungals, antivirals and other drugs, her family life was dramatically transformed.

The impact of the treatments was rapid, indeed ‘miraculous’:

• ‘Within a few days of giving them enzymes which help digest wheat and dairy, they were sleeping better and, miraculously, began speaking’;
• ‘Two weeks later’, after giving them a special vitamin supplement ‘to help with gastrointestinal problems and support the immune system’, their ‘behaviour began improving and they started to do what they were told’ (parents of children who are not autistic may wish to try this);
• After further tests, apparently revealing parasitic infestation and bowel inflammation, wheat and dairy products were excluded from the twins’ diet: their speech and reading improved;
• A ‘private psychologist’ pronounced that, after 18 months on the biomedical programme, the twins were ‘no longer on the autistic spectrum’.

Though it is well recognised that the behaviour of children with autism may improve over time, there is no plausible scientific mechanism through which these diverse treatments could achieve such dramatic results within such a short period. There is no scientific evidence that any of the specific treatments used can ‘cure autism’ or even improve the conduct or performance of children with autism. Furthermore, there is scant evidence for the safety of most of these interventions.

By her own account, Nina Ltief first discovered ‘biomed’ treatments at the first conference of the British parents’ group Treating Autism in 2007. The group’s second conference – promoted by the Daily Mirror report – took place last month in Bournemouth (2). I would like to be able to report in more detail on this conference, but after I asked a few questions at the first conference, I was banned from the recent event (even though I offered to attend to debate with any of the platform speakers). The guest of honour at both conferences was Dr Andrew Wakefield, the leading promoter of the (scientifically discredited) claim of a link between the MMR vaccine and autism, now based in a private biomedical treatment clinic for autistic children in Texas. The Bournemouth course featured several prominent figures from the Defeat Autism Now! campaign in the USA, which links parents to DAN! practitioners (certified by attending a course lasting a few hours) and to a multi-million dollar network of laboratories and suppliers of dietary supplements, vitamins and other medications.

Let’s look more closely at one of the Bournemouth platform speakers based in the UK: Dr T Michael Culp. The conference publicity explained that Dr Culp had acquired a ‘medical degree’ from Bastyr University, Seattle, and had subsequently worked as a ‘family practice GP’ (3). He had then become ‘director of medical education’ at a commercial lab, where he had developed ‘innovative functional laboratory tests’, before relocating to London. The organisers described Dr Culp as ‘a world authority on Single Nucleotide Polymorphisms, pronounced “snips”’, helpfully explaining that SNPs ‘can have a major impact on how we respond to things, such as viruses, toxins, bacteria and other assaults’. Dr Culp ‘will explain how to test for SNPs believed to play a role in autism and how this information can be used to make treatment decisions’.

Close inspection of Dr Culp’s qualifications reveals that these are MA.ND: he is a doctor of naturopathy rather than conventional medicine (MD in the USA) (4). Bastyr is a private college of naturopathy, not a conventional medical school. Though the title ‘Dr’ is widely used in the USA by osteopaths and dentists, as well as naturopaths and chiropracters, this is not common practice in Britain. Dr Culp’s work as a ‘family practice GP’ is not the sort of activity some of the parents attending the Treating Autism conference would understand as ‘general practice’: according to Dr Culp’s website, he ‘specialises in medical nutrition, botanical medicine, homeopathy, craniosacral therapy and several forms of mind-body healing’ (5). Dr Culp claims experience in treating ‘long-term illnesses’, including chronic fatigue, depression, irritable bowel syndrome; he does not list any experience in relation to children with developmental disorders. His global status in research in genomics appears to have been achieved without having a single publication listed in the PubMed database. More than a decade ago he published an article entitled ‘Vitamins and HIV therapy: a naturopathic perspective’ (6).

Dr Culp runs a firm called Integrative Health Solutions Ltd, based in the Harley Street district in London, which offers a range of laboratory tests. One of the most popular is ‘high resolution blood microscopy’, a variation on the technique known as ‘live blood analysis’, now on offer in other autism treatment clinics (7). This test, involving the projection of a blood film from a finger prick on to a screen for visual analysis, was dismissed more than 20 years ago by an American professor as ‘high-tech hokum’ (8). It has been promoted in the alternative health sector for the past 50 years as a method for the early detection of cancer, degenerative diseases and immune system dysfunctions. According to Edzard Ernst, professor of complementary medicine at the Peninsula Medical School, ‘no credible scientific studies have demonstrated the reliability of “live blood analysis” for detecting any of the above conditions’ (9). The same could be said for the value of tests for SNPs in guiding ‘treatment decisions’ in children with autism.

Professionals experienced in the world of autism may object that there is nothing new about charismatic therapists offering miracle cures to parents. It is true that there is a long history of such interventions, including holding therapy and facilitated communication in the 1980s, secretin in the 1990s, and the more recent promotion of healing by dolphins, dogs or horses. It is also true that most parents are highly sceptical of the claims made by those who promote wonder cures.

But the current vogue for ‘unorthodox biomedical’ interventions has – with the help of the internet – developed more rapidly and had a wider impact than any of the earlier fads. Though the collapse of the litigation against MMR had a dampening effect on this movement in the UK (whereas in the USA a more resilient anti-vaccine campaign has boosted the biomedical network), it has gathered momentum over the past couple of years. New clinics have been established in Edinburgh, west London and south London. The pressures of the recession on the private medical sector appear to be encouraging clinics and practitioners who have previously treated adults complaining of chronic fatigue, allergies and other ‘medically-unexplained’ conditions, to diversify and seek to meet new ‘needs’. Parents of children with autism, now commonly depicted as an epidemic condition, have become a focus for certain sections of the private medical sector. The investigations and treatments offered to children with autism are the same as those recommended for adults with diverse medical conditions: none is specific to autism.

Biomedical tests and treatments impose a heavy burden on families. One recent US estimate was of an average annual cost equivalent to the median household income ($50,000) (10). Clearly such costs are far beyond the budgets of most British families who do not have private medical insurance (which may well not cover such costs). Yet, as a General Practitioner, I have come across families living on benefits who have spent a substantial proportion of their income on such interventions in the (forlorn) hope that this would help their autistic children. The opportunity costs – in terms of other expenditures of family resources that are sacrificed to biomedical interventions – may also be high, affecting siblings and the wider family.

It is important not to exaggerate the risks of biomedical interventions. They are mostly harmless as well as useless. However, this is not true of some of the more intensive treatments, such as heavy metal chelation therapy and the use of drugs such as anti-inflammatories and anti-virals (11). Testing, too, is not without its difficulties. The recent US vaccine court cases revealed children being subjected not only to repeated blood tests, but also to multiple gastroscopies, colonoscopies and lumbar punctures (12). The distress caused to autistic children and their families simply as a result of being dragged along to numerous clinic appointments should also not be underestimated.

However, the most damaging aspect of the crusade to ‘cure autism’ is not the treatments, but the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook project a negative view of autism, as a destructive disease process, drawing parallels with cancer or AIDS. They portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. This rhetorical excess implicitly disparages and dehumanises people with autism. It is not surprising that such a negative outlook towards autism sometimes seems to lead to a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease.

What can we do to deter the damaging influence of the unorthodox biomedical approach? There is work here for both professionals and parents.

For professionals, it must be a priority to uphold serious science against junk science and to establish a clear boundary between professional practice with a sound basis in medical science and practice lacking such a foundation. One of the tragedies of the MMR scandal is that it has taken more than 10 years for the full extent of the scientific critique of the Wakefield thesis to be articulated in the public realm. As a result, parents of autistic children – who were most harmed by this bad science – were the last to learn the truth. We need authoritative and rapid responses to claims that may appear scientific but lack adequate validation, and may foster false hopes among parents.

It is also important that mainstream scientists and doctors do not give legitimacy to pseudoscience and quackery. For example, the recent Treating Autism conference proudly proclaims the endorsement, ‘The Royal College of Physicians has awarded the conference 10 credits (code ID46479) for the two-day duration’, presumably in recognition of its value for postgraduate education. The organisers were so pleased with this ‘support’ that it features, in bold print, in the model letter they recommend that delegates send to their GP accompanying a book on biomedical treatments. Mainstream specialists sometimes agree to appear as speakers at biomedical conferences, giving them the appearance of professional respectability (unfortunately, they do not appear in order to debate some of the biomedical lobby’s claims, as I offered to do). Alternatively, organisers of mainstream conferences may invite representatives of the biomedical approach to speak at their conferences, despite their lack of relevant scientific or clinical expertise. The losers from this misguided collusion are parents for whom the distinctions between science and pseudoscience are blurred.

For parents the priority must be to put the interests of the child first. Children with autism should not be subjected to testing and treatment that is not supported by good evidence of efficacy and safety – especially if it lacks any scientific rationale. Parents should be more critical of the claims made for biomedical interventions and more questioning of the qualifications, experience and expertise of those offering them. Parents’ organisations should be wary of promoting the commercial interests of alternative practitioners and their associated laboratories and corporate suppliers of diets, pills and potions.

What our children need is less grieving and more accepting and loving as another human being – not just by their families but by others, too. We need an end to the miracle cure madness, and to give good steady science a chance to make long-term gains. For the present, we need to work on avoiding unnecessary despair and on developing a better understanding of what it means to be a valued human being.

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).) The above article is an edited version of a lecture given to a conference on autism at the Royal Society of Medicine, London, on 23 March 2009.

(1) Can you ever cure autism? This mum believes her sons have recovered, Daily Mirror, 2 March 2009

(2) See Treating Autism.

(3) See Hot off the Press! Final Line Up for Conference.

(4) See Patrick Holford and Who Teaches at the Institute for Optimum Nutrition, Holford Watch, 18 September 2007; and Bad science forum.

(5) See Integrative Health Solutions.

(6) TM Culp, Vitamins and HIV Therapy: A Naturopathic Perspective, STEP Perspect, 1995 Spring; 7(1):1,7

(7) See pp135-136, Defeating Autism: A Damaging Delusion, Dr Michael Fitzpatrick, Routledge 2009

(8) Live cell analysis: high-tech hokum’, JA Lowell, Nutrition Forum

(9) A new era of scientific discovery, Guardian, 12 July 2005

(10) p187, Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Jenny McCarthy, Dutton, 2008

(11) See pp1-13 and pp 114-138 Defeating Autism, Dr Michael Fitzpatrick, Routledge, 2009

(12) MMR-autism scare: the truth is out at last, by Dr Michael Fitzpatrick, 23 February 2009