Dore offers treatment for ASDs – but where is their evidence? And what about the ethics?

5 Feb

Dore is a business promoting a startlingly expensive exercise programme – which they have previously claimed can treat conditions such as dyslexia, dyspraxia and ADHD. Now, Dore seem to think that they have stumbled on a great new treatment for Autistic Spectrum Disorders (ASDs). However, their research seems to be rather lagging behind their beliefs.

Dore has been talking up a research project of theirs: they claim great results from “working with 1,000 patients suffering from the symptoms of high-functioning autism”, although only 56 people with a “formally diagnosed” ASD. Like all revolutionary new research, this was announced on the Dore Internet forum and published in – um – a local newspaper.

Now, I would argue that a trial with an n of 56 with formally diagnosed ASDs is – even if well-conducted, something that has been a problem for Dore in the past – too small to allow one to roll out a treatment programme based on the results. Certainly, it’s hard to discuss this research until it is published in a proper, peer-reviewed journal (presumably as a pilot study, investigating whether more research in this area is worthwhile).

However, when asked about the research, Dore’s Dr Roy Rutherford has decided on an unusual approach, stating that: “Dore is in preliminary discussions to work with some of the leading researchers in the UK in autism. I cannot tell you who this is yet”. This sounds rather like Dore has decided to first promote their ‘treatment’ for ASDs – even for the 1,000 people with ‘symptoms’ of ASDs included in the ‘research’ discussed in the local press, the fees for the Dore ‘treatment’ would have ran into millions of pounds unless waived or discounted – and only then do some credible research. If so, this is horribly unethical. One should also bear in mind that Dore claim to have spent £5m on research: if so, it is rather unfortunate that they have had to publish their ‘research’ on ASDs in a local newspaper, and not a proper journal.

It is often argued that ‘non-drug’ treatments such as Dore are necessarily harmless and benign. It might seem that – even though most of the children in Dore’s research on ASDs did not have a formal diagnosis – this does not matter so long as the parents believed that there were problems. This is false. While there are a number of risks, I’d like to end by pointing out some of the negative perceptions of those with ASDs and specific learning difficulties that can arise from Dore’s approach. One mother on the Dore forum – who put their child through Dore – states that:

L has none of those [autistic] traites left now and is a normal 12 year old, a relief after a learning needs worker told me prior to Dore that L would never make a life for herself, would never be independent because to her L was severely autistic. Pity the experts who tested her could not see it, but then again it doesn’t matter, L is no longer the struggling child she once was, Dore changed all that.

Firstly, there are clear benefits from a diagnosis of an ASD from a qualified professional – instead of a ‘learning needs worker’ or a Dore employee looking for ‘Cerebral Developmental Delay’. It can be useful to know whether someone does meet the diagnostic criteria for an ASD, and it is important to get an informed account of what their ASD means – for example, any competent professional will know that autistic people can often live independently and clearly do have lives.

Secondly, a proper diagnosis can be useful in order to assess the benefits (or lack of them) of any treatments. If a mother is lead to believe that her child will never be independent or have a life if allowed to develop untreated, it will be too easy to attribute the natural development of a growing child to the miraculous powers of the Dore treatment (or whichever other treatment is being used at the time).

Thirdly, this type of perception and (non)diagnosis impacts upon the lives of people with ASDs. If they are assumed to be helpless without Dore or some other ‘treatment’ (for example, the local newspaper piece on Dore claims that “a patient who has been unable to communicate throughout his life” went through the Dore programme – something that would have been impossible unless the ‘patient’ was able to follow instructions) this will not help to build an inclusive society.

With Dore, then, we see another expensive, unproven, ethically problematic ‘treatment’ for ASDs. Nothing unusual there – but this company has a lot of money behind it, and seems to be trying to expand. There is a real need to challenge this and to insist on an acknowledgement of the complex realities of ASDs and specific learning difficulties – in contrast to Dore’s tendency to reduce everything to ‘Cerebral Developmental Delay’ and to declare fabulous results which turn out to have been limited by Dore’s own apparent Research Development Delay.

6 Responses to “Dore offers treatment for ASDs – but where is their evidence? And what about the ethics?”

  1. Brainduck February 5, 2008 at 23:00 #

    Thanks. People have this idea that ‘non-drug’ treatments are harmless. Been there myself for dyspraxia, and spending 15 minutes twice a day for years doing something futile is at best an opportunity cost of time that could have been spent on real life skills or just getting on with living.
    At worst it can be a twice-daily concentrated dose of frustration & despair which corrodes relationships, self-belief, and any sense of being ‘acceptable’ as a non-standard-issue human being.
    Putting thousands of people through an unproven treatment wouldn’t be acceptable if it were a pill, and just because they are trying to change the brain through practice rather than direct chemistry doesn’t make it better.
    They advertise a ‘proven drug-free remedy for Asperger’s’ – but this is the only ASD ‘research’ I can find & it’s far from proven. Misleading the desperate is wrong.

  2. Sharon February 5, 2008 at 23:09 #

    Brainduck, I hate to think of all those children wasting time on useless exercises and feeling responsible when they don’t have the promised effects. Also, can’t the advertising standards agency take Dore to task if they’re claiming it as a ‘proven drug-free remedy’? I hardy think an article in a local paper counts as proof.

    What is it about autism that attracts the quacks?

  3. laurentius-rex February 6, 2008 at 00:37 #

    Journal of Paediatrics and Child Health. (2007) 43, 653-655.

    Curing dyslexia and ADHD by training motor co-ordination: Miracle or myth?

    D. V. M. Bishop

    Dore Achievement Centres are springing up worldwide with a mission to cure Cerebellar Developmental Delay (CDD), thought to be the cause of dyslexia, attention-deficit hyperactivity disorder (ADHD), dyspraxia, and Asperger’s syndrome. Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development. Unfortunately, the published studies are seriously flawed. On measures where control data are available, there is no credible evidence of significant gains in literacy associated with this intervention. There are no published studies on efficacy with the clinical groups for whom the programme is advocated. It is important that family practitioners and paediatricians are aware that the claims made for this expensive treatment are misleading.

    Mr Dore has already got into trouble over his advertising claims of using NASA technology.

    That being said, Mr Dore is alleged to be very litigious, I think this is a case for Brian Deer to get caught in the headlights once again.

    FWIW I know someone who went to school with Wynford Dore, nuff said……

    The treatment may not be harmful in the way that others are, but harmful to your wallet it certainly is.

    Frankly it is a wonder that Harold Levinson has never sued because his cerebellar nostrum surely is a quicker cure than Mr Dore’s 🙂

    I met a guy once who claimed he had been cured of his AS by Dr Levinson, from his obsession with the notion, it was quite clear to me he had not been cured by any means.

  4. Jon February 6, 2008 at 12:38 #

    Thanks for the comments. Yes, it is becoming hard to find any ‘alternative’ treamtent that’s not wonderful for ASDs. I wonder why.

    Re. the Bishop study – yes, that’s as close to pwnage as I’ve seen in an academic journal…

  5. Jemaleddin February 6, 2008 at 13:39 #

    Let’s not forget that these “non-drug” treatments aren’t free either. So you’re giving up your time and your money that would be better spent doing something evidence-based. You know, something that might actually help. It’s sad, really.

  6. Jon February 7, 2008 at 11:45 #

    Yes, it is rather sad 😦

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