Dore Talk

Hi Folks

Following this weeks press coverage in the Warwickshire area http://www.kenilworthweeklynews.co.uk/health-news/Clinic-claims-major-autism-breakthrough.3704480.jp It is a good time to share some information about the our research and what we have been working hard on.

Very interesting - but how come what should be one of the biggest breakthroughs in the treatment of ASDs is being published first in a local newspaper?

I look forward to actually seeing the methodology, stats, & data, without which it's rather hard to tell what this study actually means. It's interesting that the newspaper article talks about '56 people who had been formally diagnosed as suffering from autism' rather than the full 1000.

Real data awaited with interest - when & where can we expect this study to be published? 

The Dore Clinic has achieved massive successes while working with 1,000 patients suffering from the symptoms of high-functioning autism.

Patients with varying degrees of the brain condition have reported improvements in their symptoms and in some cases have completely overcome their symptoms.

And, in one extreme case, a patient who has been unable to communicate throughout his life, has started to speak lucidly for the first time. He is in his 40s.

The breakthrough was discovered by Dore while working with patients who suffer from dyslexia, ADHD, dyspraxia and poor concentration.

Over the last nine years they have treated 25,000 people suffering from these conditions with a series of exercises aimed at stimulating the cerebellum, the tangerine shaped part of the brain that controls hand-eye co-ordination, balance and motor-neurone movements.

The clinic is now trying to raise £2 million to fund independent, scientifically-based research based on their successes and increase the number of high-functioning autistic cases who have been through the programme.

Medical director Dr Roy Rutherford said: “The results so far have been remarkable. Although we are still in the early stages of our research these findings are extremely encouraging and very surprising.”

Wynford Dore, the founder, added: “This is a complete shock to us as we developed the programme initially for dyslexia and ADHD. Over the last few years we have been approached by a huge number of people suffering with autism and we couldn’t guarantee that Dore could help them. There is no way we could have predicted these results.”

Typically people suffering from autism struggle with social interaction, communication and often have restricted, repetitive and stereotyped patterns of behaviour.

The report reveals:

l Expressing emotions – 75 per cent improved, 44 per cent symptom gone

l High sensitivity to touch/sound – 86 per cent improved, 51 per cent symptom gone

l Aggressive behaviour – 68 per cent improved, 38 per cent symptom gone

l Dependence on routine – 72 per cent improved, 42 per cent symptom gone

In addition 56 people who had been formally diagnosed as suffering from autism have now completed the programme.

Of this number 100 per cent showed improvement across a battery of cognitive, literacy and motor tests and 72 per cent showed improvement in social skills, self esteem and mood.

ooh there goes your dyspraxia creeping in duck, reading the bits you want to and skimming over the rest!! 56 people who have been dxd with HFA have COMPLETED the programme in addition to the 1000 in the study....(you never actually told us what your brothers 'condition' is, is he autistic?) the traits of which and severity of symptoms differ so much in each person... so no doubt this will throw up the 'unreliable data' card for  the people only interested in 'research'.  If the programme helps my son with his sensory and emotional issues and also with his anger then it would certainly be worth considering from my point of view.  Unless you have experience of this condition it is very hard to empathise WHY and HOW it would change someones life.  Personally I will put Keenie forward for an assessment as soon as he is old enough, because the anecdoctal evidence is enough for me knowing how much it changed Jordans life for the better, being on the programme.

Good Luck with the research Wynford, I hope it is enough for the naysayers....but somehow I doubt it EVER will be......

I secound it Wynford good luck with the research will look forward to the results, Dore helped Leila with her autistic traites so I always knew the treatment could help others.

It is very difficult when your child has not been formally diagnosed with a sp LD, but I knew her most disabling aspect of her difficulties was the autism, this is where my phrase " The Fog" came from and many of those who have children with autistic tendencies on Dore who have read it can also relate to it.

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

Im sorry if it reads that way SS, Im just sick of hearing this 'research' debate from people who actually have no knowledge of Dore, how it works or what it does (or doesnt do) have never been to a Dore centre, even for a look round and to speak to people, but are still prepared to drone on about 'research' when we all know they will not be satisfied and the results will be 'flawed' in some way ...to them. My point about research is YES it is needed but it isnt EVER going to please Dore critics, and the scientific, peer reviewed research is quite possibly beyond the comprehension of people without a scientific background...

 I do not include YOU in that as YOU have knowledge of the programme, and you CAN say it didnt work for your child. (and it is probably very frustrating to hear peoples success stories when you know it didnt work for your son) If people have tried the programme and it didn't help, that in itself is reasearch, it doesnt work for everyone, and I beleive Dore has always said it doesnt work for everyone, but for a large percentage it does.  I think (i may be wrong here) that you said you got a full refund from Dore? I know that doesnt take away the fact that you both put your heart and soul into the programme, but it does prove that they do stand by their word? IMHO.  Im sorry that it didnt work for your son, may I ask what his conditions are? (sorry if youve already explained it somewhere else..I cant check whilst posting) Are you trying any other interventions for his conditon?

You have no idea how it feels to watch your child faithfully and diligently put his heart and soul into something for two straight years that had no effect

well, in a different context I do..but thats a whole other story.  On the other hand if you hadnt tried Dore you would still be wondering wouldnt you? Although it may not have worked, as a parent you can say that you tried. Which is still better than doing nothing, IMHO.

xx 

Eraina - you have said that you have trouble following what I write. Fair enough. But then please don't grumble that I have not written things that you haven't read. As I have said previously, my brother has diagnoses of Aspergers, Dyspraxia, & (an unusual sort of) Dyslexia. I have dyspraxia. Very many people in many family have SpLDs and/or ASDs. I have seen several family members & friends go through DORE. I do have very substantial experience of conditions for which DORE is recommended. As you said elsewhere, it is not useful to get into a 'my cat is blacker than your cat' situation. Again, I do not see why this is relevant to evaluating the quality of the research. Looking at a sample of one person is less useful than looking at studies done on many people. Saying that I 'don't understand' and can't 'empathise' is demonstrably not the case, and not relevant to the issue of whether the research demonstrates whether DORE is useful for ASD.

1000 people with 'symptoms of HFA' is not the same thing as a diagnosis of HFA. Previous DORE studies have used screening tests designed to have a high false positive rate (wrongly say people may have dyslexia/HFA/whatever). This is sensible for a screening test, as it tells you who needs further investigation. This is not sensible for research & treatment, as many of the people who you think may have ASDs from the screening test won't have them. At the end of treatment you can't reliably tell who has 'got better' & who did not have a significant problem to begin with.

I look forward to publication of the research. Hopefully it will answer many of these questions.

Missellie - I'm sorry your 'learning needs worker' said something quite so stupid, it would not have been true even if Leila was severely autistic. The only hit on Google for 'learning needs worker' is your post, what is one & in what capacity are they qualified to diagnose ASDs, please?

Eraina - I sincerely hope that you do not mean your last post to be interpreted that parents should feel guilty or that they have not tried hard enough if they have not spent two years and thousands of pounds on one of the many therapies for which there is not reliable evidence of efficacy. There are currently 104 'treatments' on the Myomancy Treatment Database, many of which score higher on ratings by people who have actually used them than DORE, and many are considerably less time-consuming and expensive. £2000 and 15 minutes twice a day for two years could do a lot of helpful things. If I had that much money for my brother I'd spend it on a new computer + assistive technology + safer kitchen equipment + bus passes, & use the time to help him learn to use visual timetables & other life skills. These would have demonstrable & immediate benefits for his quality of life. Again, years of carrying out treatments which do not work is not harmless - Starshine has eloquently expressed her own and her son's distress elsewhere on the boards. Suggesting that not doing DORE is equivalent to doing nothing, or that not having done DORE means you haven't tried hard enough, is ridiculous, cruel, and potentially exploitative.

Psyduck the "learning needs worker" is someone I knew who had WORKED with LEARNING NEEDS CHILDREN children and had vast experience with children who had autism and could see the same symptoms on Leila. She wasn't the only one I could too.

It did not matter what she said she was only telling me what I already knew, but can you imagine trying to help your child who only had learning needs at school but each year was getting further behind at school and yet was classed as having NO sp LD because her IQ was low.

Leila's diagnosis was the CEREBELLUM DEVELOPMENT DELAY which overlaps so many LD's. Dore gave her a life with none of those autitic tendencies, so i am not going to split hairs on what I said and what you cannot find on goole. Sorry If I wrote it wrong the first time but after all I am dyslexic and have the cerebellum development delay just like my youngest son, my mother, twin sister,nieces and many other of my family members. It is hereditary you know!!!!!! Ellie XXX

Starshine good luck with your continued endeavours to find help for your son, I am so sorry Dore did not work for him, I can imagine how you must feel if Dore had not worked for Leila, I would have been devestated wondering what her future would have held. Do let us know how he does and what the results of the tests show. Ellie XXX

Missellie - no need to shout, & sorry if I annoyed you. I was just asking the meaning of a term with which I'm unfamiliar, since as I'm sure you know the world of SpLDs does tend to turn into a confusion of alphabet soup at times.

AFAIK Cerebellar Developmental Delay is a very broad diagnosis used only by DORE, and appears to cover a very wide range of conditions. I've not bee able to find published norms for CDD tests (be interested to see them if they aren't covered by 'commercial sensitivity' - anyone know where I could find such?). This makes it difficult for me to get a picture of what your daughter's specific difficulties are, particularly if 'the experts who tested her' (who?) did not find the same thing as the 'learning needs worker'. It's hard to understand your story if I don't know what the starting point is.

Of course, you don't have to tell anything to strangers on the Internet, & in the context of discussing the research announced at the top of this article it's all a bit off-topic anyway.

psyduck:

 

Eraina - I sincerely hope that you do not mean your last post to be interpreted that parents should feel guilty or that they have not tried hard enough if they have not spent two years and thousands of pounds on one of the many therapies for which there is not reliable evidence of efficacy. There are currently 104 'treatments' on the Myomancy Treatment Database, many of which score higher on ratings by people who have actually used them than DORE, and many are considerably less time-consuming and expensive. £2000 and 15 minutes twice a day for two years could do a lot of helpful things. If I had that much money for my brother I'd spend it on a new computer + assistive technology + safer kitchen equipment + bus passes, & use the time to help him learn to use visual timetables & other life skills. These would have demonstrable & immediate benefits for his quality of life. Again, years of carrying out treatments which do not work is not harmless - Starshine has eloquently expressed her own and her son's distress elsewhere on the boards. Suggesting that not doing DORE is equivalent to doing nothing, or that not having done DORE means you haven't tried hard enough, is ridiculous, cruel, and potentially exploitative.

 Thats not what I meant at all, and I think you know that.  I also think  'most' of the people, including SS, will know that from any of my other posts as well. The ones NOT relating to research obviously.... You have obviously missed my post regarding visual timetables, colored paper, changing the background on the smart board, using blue pens etc etc.

JUST TO MAKE IT CLEAR WHAT I ACTUALLY MEANT..... when a child (for example) has LD's or any difficulties for that matter WE as parents/ carers/or whatever, have an obligation (IMHO) to find the best treatment or intervention WETHER THAT BE DORE, ABA, VISION THERAPY, HOMEOPATHY etc etc for that person. It is a personal choice, and I have NO problem if people find something that works for them that isnt DORE!!!

 Eraina - you have 270 posts to my 17. I've read everything in threads where I have posted, but compliaing that I haven't read the entire board directly after misreading one of my posts is unnecessary. I'm glad you've found visual timetables etc.

Eraina: 'WE as parents/ carers/or whatever, have an obligation (IMHO) to find the best treatment or intervention' - fantastic, we agree on something :)

This is why I think reliable good-quality research is so important. As Starshine said: 'had there been research showing, for example, that only 40% of children with ADHD responded significantly and positively to the program, I would have really had to have thought long and hard about commencing the program'.

This is why the poor quality of DORE research upsets me so much. It should be possible to say that DORE helps A% of people with dyslexia, B% with dyspraxia, C% with ADHD... in the following ways..., since then people could come to an informed decision about what is best for them. This should not be something where you need to read  the research papers to work out that studies supposedly about dyslexia weren't actually done on children with a diagnosis of dyslexia, for example. It's not much more difficult or expensive to do a good study than a bad one - but doing bad studies takes away the tools people need to make an informed decision.

We do have an obligation for find out what works best for what. Shoddy research does not help. I very much hope that when this research is actually released, it will be better able to answer these questions with respect to ASDs. If DORE works better than anything else, this should be demonstrated so more people can make an informed decision to use it.

So come on then DORE, when & where are you going to publish? This is worse than waiting for the last Radiohead album...

Hi Duck

Hope your well and not too bogged down with uni work! The date for the release of this research has not been set yet - so like you I also wait with anticipation. These issues are so serious it would be really wonderful if people could work together to help those struggling rather than fighting against one another, that's what is incredibly important here!

All the best

Rose

Psychoduck, you are so patronising and rude I can't keep quiet any longer. Why do you always twist peoples words to suit your own aims? You seem to target Eraina in particular. Is it because she can run rings around you with her knowledge of this subject?  Please let this forum get back to what it used to be. There must be more suitable places for you to wage your war against Dore. I  will be ignoring all your posts in future. You are ruining the  friendly atmosphere of this site.

Debbie, sorry if I come across as 'patronising'. I find using forums for this type of discussion tricky, since I am trying to steer between lapsing into  incomprehensible EdPsych jargon shorthand (I' doing an Psychology degree), or explaining everything to such a level of detail that it obscures the thrust of the argument. Without knowing much about those reading, and without seeing reactions to guide me, it's tricky to work out what the right level is - specific feedback would be welcome.

I'm not trying to 'wage a war' against DORE. Unlike DORE, I'm not resorting to legal threats to stop people saying things I don't like. Unlike DORE, I try not to claim anything I can't back up with evidence. I have no problem with individual parents who choose to use DORE. I do have a problem with the consistently shoddy nature of their research, and with how they present this research in their marketing. Unless you are working on their marketing or research, there is no need to feel threatened (and if you are, you should be well able to defend your position by arguing the data rather than personal attacks). Otherwise then we are just disagreeing, and I would hope that is possible without resorting to flaming.

Anyway, since we are on this thread - c'mon DORE, I'm bored with waiting for this research. Putting 'Aspergers' into Google gets you a paid ad for 'Aspergers Syndrome Proven Long Term Drug-Free Solution Relieving the Symptoms of Aspergers www.Dore.co.uk/Aspergers'
and I'm sure they would not be so unethical as to claim 'proven solution' without some actual research 'proof' - so where is it?