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The Treating Autism campaign decided at its recent ‘second international biomedical conference’ in Bournemouth to provide parents with an open letter to their GPs together with a complimentary copy of a book promoting ‘unorthodox biomedical’ interventions for their children.1 Recommended treatments include exclusion diets, vitamins and supplements, heavy metal chelation therapy and medication with antibiotics, antifungals, and other drugs.2 Given that Treating Autism offers the prospect of ‘life-changing improvements’, indeed of children ‘losing their diagnosis’, and recovering from autism, we can expect to see more parents in our surgeries demanding these treatments in the near future. It may therefore be useful for GPs to know something about this campaign.
The guest of honour at the second Bournemouth conference (as at the first in 2007) was Andrew Wakefield, the leading promoter of the claim for a link between the MMR vaccine and autism, now based in a private clinic in Texas. The conference featured several prominent figures from the Defeat Autism Now! campaign in the US, which links parents to ‘DAN! practitioners’ (certified by attending a course lasting a few hours) and to a multimillion dollar network of laboratories and suppliers of biomedical products (which also sponsored the Bournemouth event).
I would like to be able to report in more detail on the Bournemouth conference, but after I asked a few questions at the first conference, I was banned from the second. The conference platform included not a single paediatrician or autism specialist or GP, or any medical doctor practising in the NHS.
One of the few platform speakers based in the UK was ‘Dr’ T Michael Culp, who is actually a naturopath rather than a medical doctor. He runs a Harley Street clinic offering testing and treatment for adults with chronic fatigue and similar conditions. Another was Natasha Cubala-Kucharska, a DAN! practitioner qualified in both conventional and alternative medicine in Poland. She is attached to a private clinic in Hertfordshire that has long specialised in ‘allergy and environmental illness’. It provides chelation for a range of conditions and sells separate measles, mumps, and rubella vaccines.
The common features of the treatments recommended are the absence of any coherent scientific rationale and lack of evidence of efficacy or safety. Though most are probably harmless as well as useless, this is not the case for some of the more intensive treatments, such as chelation, from which one British child has already died in the US.3 The book being donated to GPs by Treating Autism recommends treating ‘autistic enterocolitis’ — a condition not recognised by any reputable medical authority — with steroids, immunosuppressants and anti-TNF drugs.2 In the US, children with autism attending DAN! practitioners endure not only repeated blood tests, but also multiple gastroscopies, colonoscopies, and lumbar punctures.4
How should GPs respond to parents bearing the Treating Autism appeal? One of the lessons of the MMR debacle is of the importance of upholding serious science against pseudoscience, and of professional practice based on evidence against that based on anecdote, dogma, and speculation. We should emphasise to parents that for us, as for them, the interests of the child must come first and that this means not subjecting children to unvalidated tests and untested treatments. We could also encourage parents to be more critical of the claims made for biomedical interventions and more questioning of the qualifications, experience, and expertise of those offering them.
It is also important that the medical mainstream does not give legitimacy to pseudoscience. The fact that the Bournemouth ‘quack-fest’ was ‘awarded ten credits’ for postgraduate education by the Royal College of Physicians was proudly trumpeted in the programme and repeated in the open letter to GPs. This sort of endorsement gives junk science an aura of respectability and serves only to confuse parents.