Posted by: Nicholas Swetenham | March 27, 2009

Mongolian shamans and autism

A mongolian horse - Wikimedia Commons

A mongolian horse - Wikimedia Commons

A very unusual article in the Daily Telegraph entitled ‘How the Horse Boy Conquered Autism’ advertising a book and documentary film called The Horse Boy about two parents and their child with pervasive development disorder not otherwise specified (PDD-NOS), also called ‘atypical autism’. They claim that their child ‘recovered’ with the help of horse-riding and Mongolian traditional healers (shamans).

“The other therapies we had tried – biological and behavioural – hadn’t had such swift and radical effects. Kristin is a good scientist and good scientists have open minds. Also it helps that I don’t have a New Age bone in my body – I was never interested in any of it growing up, but got gradually drawn in through working with indigenous tribes who don’t do anything without going through a shamanistic consultation process first. They are very practical people who live in some of the most hostile environments on the planet. They can’t afford to indulge in ideas that aren’t effective for them.”

Telegraph

I am very happy for these parents that their child’s neurological development has been so successful, and that they are enjoying their family life.

See this excellent post from 2006 over at LeftBrainRightBrain called Recovery Stories And A Dash Of Reality, discussing the lack of evidence for children being ‘cured’ of autism. It is however quite clear that even autistic children experience some neurological and cognitive development as they grow. Here is a recent review of the topic in Neuropsychology Review, in which it is suggested a diagnosis of PDD-NOS is a favourable sign; here is a case study from 1995. Note that rather than ‘curing’ autism, it is instead better to think of it as improving neurological function. The child in the story, Rowan, is still autistic.

The fact that Rowan, the child from the Telegraph story, enjoys riding, is not evidence of its curative ability. Similarly, the fact that the shamans were present at a particular point in time does not imply that their presence improved Rowan’s neurological development. Maybe if they had gone to Disneyland for a holiday instead he would still have improved at that same time. Correlation is not causation. I also object to the idea that the shamanic treatments are more likely to work because nomadic steppe people ‘don’t have time’ for ineffective treatments.

You also have to wonder about the presence of camera crews throughout the family’s journey. Surely setting out with the intention to make a documentary about this results in confirmation bias? And read this passage:

Back in Texas, Rupert and Kristin have used the unanticipated windfall from worldwide sales of the book and film to found an equine therapy centre. There is a new book in the pipeline called The Gifts of Autism, which treats its subject as a set of opportunities to be worked with rather than a problem to be fixed.

This is all very entrepreneurial. I just hope this article does not give people false hope that a cure for autism is just a horse-ride away.

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Responses

  1. Thanks for the link 🙂

    People seem to think that anything that an autistic person simply enjoys must be a therapy. Could it simply be that horse-riding is quite a pleasant activity? I think so.

  2. Parents with autism are understandably, desperate for “cures”. One anecdotal story, while heartwarming, can also be dangerous. Just like how “actress” Jenny McCarthy claims her son is cured of autism through a special diet. It gives false hope to families.

  3. I’m big on “cures” or at least management. My husband is bipolar and we manage his manic depressive tendencies very very well.

  4. I’m not particularly desperate for a cure. What I would like is an end to quackery and much more money dedicated to education and interventions.

    • Better management of autism is indeed a laudable goal. I agree with realityrounds that the real problem with this article is that it gives people false hope of a cure for autism requiring only a trivial shamanic treatment and not hard science. It is bad both for parents with autistic generally, and the wider audience who get lured into the pseudoscience.

  5. […] Mongolian shamans and autism A very unusual article in the Daily Telegraph entitled ‘How the Horse Boy Conquered Autism’ advertising a […] […]

  6. thankyou all for these responses to our family’s story
    couple of things: nowhere do we say rowan was cured (i say specifically in the article that rowan is still autistic), nor are we looking for a cure. what is true however is that rowan was healed – by whatever means – of three key dysfunctions – incontinence, terrible tantrums and being cut off from his peers – in an extraordinarily short time frame, after years of trying all kinds of orthodox therapies both bio medical and behvioural. as a dad im obviously thrilled at the outcome. but im not touting miracle cures and i say so explicitly in the article.
    in terms of seeing the journey as entrepreneurial because we took a film crew and have now opened an equine therapy facility – the motivation for the crew was to have some hard evidence of what occurred – and spending one’s personal money on opening a charity is hardly entrepreneurial – it’s expensive but we wanted to give back to the autism community.
    a ‘pleasant actvity’ (see first post above) can indeed be a therapy if done correctly (occupational therapy for example is usually fun and playful, but it’s therapy none the less). the pleasant aspect makes the recipient intrinsically motivated to learn.
    all this said, im certainly not surprised that the shamaistic side of our story breeds some incredulity. i myself only got exposed to it through human rights work with san (bushman) groups in southern africa and, like anyone who works down there, saw – over time – how effective it was for these very practical, non-whimsical desert people.
    one doesnt want to expose people to false hope. one also needs to think outside the box if one is going to tackle a condition as enigmatic and non-undertsood as pdd (nos) and autism. every family will do this in their own way. this was simply the way that opened for us. the result is we have a very functional child now, who continues to progress, rides horses by himself, does third grade maths at age seven and – this is important – is still autistic. meaning the autism is part of who he is, and we accept that fact.
    but he has found a way out of the terrible dysfunctions that afflicted him. and we are incredibly thankful for that

  7. Dear Rupert,

    You are clearly a caring person and I am glad that you are happy in your family life.

    I agree that all possible avenues for therapy should be pursued with an open mind, and that many people do find that alternative therapies ‘work for them’. What is not clear is how much of a therapy ‘working for you’ is down to a genuine therapy-specific effect (i.e. horses and not bicycles or sheep or placebo) and why it should be the case that horse-riding is helpful.

    My main point of concern is that newspapers consistently presenting stories such as yours without showing the other (biomedical) side of the story may harm people’s understanding and acceptance of science; I think you would agree that further biomedical and behavioural research on autism is desirable.

    When I said that your venture was ‘entrepreneurial’ and that you brought camera crews, my point was not necessarily that you would make money out of it. It is more that you seem to have set out with the intention of showing that equine therapy works – rather than to find out whether it works.

    Best wishes,

    Nicholas

  8. I think if we wait until science has caught up to ‘prove how shamanism works’ in a ‘controlled scientific environment’ a lot of time will have been lost during which people and animals could have received healing. If it works for you, do it – if it doesn’t, try something else!
    Carly Hillier –
    Equine Science Student with Limerick University and Equine Shamanic Practitioner

  9. Dear Ms. Hiller,

    I disagree with the idea that research into these therapies is either a waste of time or a block to people receiving the therapy for two reasons:

    1. Research into equine therapy or shamanism and the therapy itself can be done at the same time. In fact, if we want to demonstrate that equine therapy or shamanism work we need to apply the treatment to a large group of people and compare them to a randomised control group who do not receive the treatment. This does not imply anyone ‘missing out’ on the treatment.

    2. Doctors want what is best for their patients. If any therapy is shown to be effective by scientific means in helping children with autism, the British Medical Association, the Royal Colleges and ordinary doctors would call for it to be funded on the NHS in the interests of their patients. This would result in these therapies become far more widely accessible in the UK and hence many more people will benefit. However, if it cannot be shown to be effective, then NHS money is probably better spent on other therapies.

    Developing a solid evidence base for therapies is not a trivial matter but is essential for any health care practitioner to deliver the best standard of care.

    Doctors and scientists are often accused of being close-minded but most are in fact open to any evidence showing effectiveness or ineffectiveness either way. In the UK, doctors working for the NHS do not stand to gain commercially according to which therapy they give. In contrast, some alternative therapy practitioners can have a personal and/or financial stake in demonstrating that the therapy does work since they give patients this therapy for commercial gain and it may be their main activity and passion.

    Best wishes,

    Nicholas

  10. What a great discussion. I’m a middle aged person with Aspergers Syndrome, I was diagnosed 6 years ago at the age of 40. I function so normally today that most people don’t believe that I’m autistic. There’s no doubt in my mind that the diagnosis is accurate, my childhood was a textbook case and I still have great difficulty with close relationships.

    It’s been a long and very difficult path taken mostly on my own. Even today there is still very little support for adults, almost all of the focus is on children, that will undoubtedly change over time.

    I measure success by my peace of mind and ability to function in society and take care of myself. I do not see autism as something to cure or to even overcome, lately it almost seems like a gift. I owe almost all of my success to a Buddhist type of meditation that I’ve been practicing for close to 20 years. Meditation, Hatha yoga, acupuncture and other eastern practices that might be considered religious or spiritual or ‘voodoo’ are gaining validity in the western scientific community. I don’t really question my first hand experience, I only know that I’m enjoying life. If I do step back I see it as simply cause and effect, developing self awareness that allows me to interact more effectively, avoiding scorn and ridicule. Reduced stress levels, much lower anxiety.

    I’ve been exploring cranial sacral therapy, I’m a massage therapist and I’m now training in energy work. It’s my understanding that the Upledger Institute has done work with autistic people with some success.

    When viewed from a western perspective, with tolerable scientific terminology, the shamans of Mongolio become much less mysterious, they’re not unlike a talented cranial sacral therapist with a decade or two of experience. There are plenty of energy workers who might be called charlatans in the western world but there are many who have a gift for it, the training and a record of success. I would encourage anyone, autistic or otherwise, to explore alternative methods of healing before judging them. At the very least it feels great.

    • Dear Michael,

      Thank you for your comment. I agree that more support and awareness is need for adults living with autism and related conditions.

      However, I do not think that any of the practices you mention – meditation, yoga, acupuncture or craniosacral therapy/cranial osteopathy – are ‘gaining acceptance in the Western scientific community’. Firstly, I believe that Western/Eastern thought is an inaccurate dichotomy. Thought can be rational/irrational, scientific/non-scientific or spiritual/non-spiritual. Secondly, no ‘Eastern’ practices such as what you describe as “energy work” – by which I believe you mean Reiki and similar practices – or meditation have been shown to be effective treatments for serious conditions. They might make you feel better about yourself and perhaps improve your fitness but that is not the same as a medical treatment. Craniosacral therapy is in fact the most contentious area in osteopathy, a field which itself is in the process of developing an evidence base (as are many treatments in conventional medicine).

      As I discussed in my reply to Carly Hiller, demonstrating a treatment’s effectiveness is not a neutral issue. If its effectiveness is demonstrated then us conventional, button-down establishment allopathic types will advocate for its usage and funding. Access for effective treatments can only be improved by an evidence base. Similarly, harmful treatments are (eventually) dropped by medical practitioners of conventional medicine. It is also important to distinguish something which ‘worked for you’ (which potentially includes psychological and/or placebo effects, is anecdotal and more likely to be reported by successful recipients, and does not have a control comparison) with treatments whose effectiveness is demonstrated in a Randomised Controlled Trial (RCT).

      Best wishes,

      Nicholas

  11. To Nicholas

    Thanks for your thoughtful reply. I’m only sharing my experiences, it’s irrelevant to me how it’s interpreted, I know what has worked and what has not and I find no need to convince anyone. I find an hour of meditation and a good workout at the gym everyday to be far more effective than any of the numerous medications I’ve been prescribed over the years, all of which I regretted ever trying. This may not work for another person but there’s no harm in checking it out, there are no risks. Highly functioning autism is a permanent condition that is a challenge to live with, it’s not cancer. A person with a more dysfunctional form of autism may find meditation to be impossible but may benefit from a passive therapy like cranial sacral work.

    I refer to cranial sacral therapy as ‘energy’ work because that’s what it is. Because of skepticism in society there seems to be a need in the profession to avoid this terminology. I am suggesting that whatever research has been done at the Upledger Institute is probably worth looking into. Gaining credibility is a slow process as you have illustrated.

    There is a difference between eastern and western thought when it comes to many medical practices, I find your need to dispute this to be a bit confusing. I suppose we could talk about individual therapies and their countries of origin but I was trying to make a general statement.

    In the west we can’t even acknowledge the chakra and/or meridian energy systems as they apply to acupuncture without being dismissed as a New Age flake by many yet we’re beginning to see acupuncture treatments covered by medical insurance here in the US because it works. A very short time ago it was dismissed as ‘voodoo’.

    It’s very difficult to explain how and why acupuncture works without some basic concept of traditional eastern medicine which can be drastically different from western medicine and thinking. If a person has any knowledge of eastern spiritual practices and the philosophies behind them, like meditation and hatha yoga, the connections to eastern medicine become obvious as do the differences to the scientific and philosophical views in a Eurocentric culture.

    I believe the walls are breaking down very quickly between eastern and western philosophies so maybe your assertion is accurate on some level but when discussing traditional medical practices that are gaining acceptance outside of Asia it’s useful to make the distinction.


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