Dr Joneja had had an email from a dietitian who had recommended her article on autism and the diet on the Foodsmatter website to one of her patients. But the patient had come back to ask her whether the article was OK as it appeared on a site which also ‘connected to other questionable websites’. Dr Joneja asked me whether I would like to respond – which I did – more or less as follows:
‘When we set up Foodsmatter the idea was to look at dietary approaches to any health condition in which diet might be an issue. So, as far as ASD was concerned we were really only interested in dietary regimes which might impact the condition, at least in some cases – such as the gluten-free/casein-free diet.
So, if you look on the page concerned there are articles dealing with he GF/CF diet, the use of oxygen, the GAPS diet, secretin and fecal microbiota transplants. Whether you regard these as ‘questionable’ depends on where you are coming from. We do not recommend or condemn any of them – we merely put them out there for consideration.
As regards the websites mentioned as worth consulting. Well, I can imagine that some groups would regard ‘The Age of Autism – a regular web newspaper whose authors believe that autism is an environmentally induced illness, that it is treatable and that children can recover’ or ‘Latitudes. A US based organisation which explores advanced and alternative approaches to ADHD, Tourette syndrome, autism and learning disorders’ as ‘questionable’. However, I have always felt that in conditions such as ASD (and allergy) where there is neither medical consensus, nor effective treatment, one should keep a very open mind.’
Dr Joneja forwarded my response to the dietitian with the comment that she ‘supported this open mindedness’ adding:
‘I do write evidence based articles, with full references, for journals and websites that I feel are providing balanced views of ther management strategies, especially when ‘traditional medicine’ is unable to reach consensus as to diagnosis and treatment. These are especially relevant in conditions which involve adverse reaction to foods. I present the approach dictated by evidence-based research but am certainly not in a position to criticise alternative methods if they have proved helpful to the sufferer.’
The dietitian responded, thanking Dr Joneja for the explanation but adding:
‘I agree that there is so much we don’t know about autism and other conditions in developmental paediatrics. My struggle as a clinician is to see so many parents who have been given high expectations and false hopes (people promising outcomes that never come true). It involves a lot of profit and a lot of money. Coming to terms with the diagnosis and dealing with the behavioural challenges are hard enough for many families. That is why I am so very cautious when I provide information.’
And this, of course, is the problem. The only patients that conventional medics, such as Dr Joneja’s correspondent, see are those who have indeed been ripped off, or at least misled, by suspect practitioners who either did not know what they were doing, or who were genuinely charlatans peddling useless ‘cures’ purely for profit. And who can blame these conventional doctors for trying to protect their patients from such distressing and dangerous experiences.
But what they do not see are the patients who consult ‘alternative’ and sometimes unorthodox practitioners employing approaches which may appear unusual but which actually work! Why would they? Those patients have no need to visit them as, if they are not actually ‘cured’, they are at least on the road to recovery. So all the poor conventional practitioner ever sees are the failures whose hopes have indeed been falsely raised. Who can blame them for being protective.
The trick, of course, is to be able to tell the genuine but unorthodox practitioner from the charlatan or the poorly trained, and so ignorant, but well meaning ‘therapist’. The latter are often the more dangerous as they truly believe that what they are offering will work yet have very little real idea of what they are doing. (See for example, the case highlighted by Alex Gazzola in a blog a few months ago.)
But I do very firmly believe that while not being gullible one really must be prepared to examine every approach on its merits – and never dismiss a theory or a therapy purely because it does not fit the existing mould. This is especially true in areas such as autism and allergy where conventional approaches really do not offer answers.
One needs to remember that although treatments such as helminthic therapy, or fecal micriobiota transplants are now being seriously considered by quite significant numbers of ‘conventional’ medical practioners, a mere ten years ago anyone suggesting either would have been dismissed out of hand as a nutter, if not an actual charlatan.