Brainduck’s Weblog
Psychology geek tries to explain a few things.

May
02

There’s a discussion of Brain Gym on the NeuroLogica blog, written from a neurological rather than EdPsych perspective. I found the discussion of the history of ‘psychomotor patterning’ most interesting - useful background to understand the development of movement-based approaches to treating learning difficulties and disabilities.

(BTW, sorry for lack of recent posts, final exams & dissertation deadlines are keeping me rather busier than I’d like).

Apr
03

Last week I helped to give a workshop on poverty & mental health at MEDSIN Oxford, a medical student conference (I snuck in under false pretences, being a psychology student, but it was very interesting). I’m uploading to here the overheads we used for the talk, and the information we gave people to take away. It’s a bit too long and with too many pictures to read nicely as a blog post, but nevertheless I hope that people may find it interesting.

Poverty and Mental Health information

Poverty and Mental Health overheads

Sorry it’s a bit more technical language than I’d usually use on this blog since it’s meant for medical students, but I haven’t got time to re-write it at the moment. Again, many thanks to TL who wrote a lot of the above, and a reminder that, like everything on this blog, the above work is under a Creative Commons Attribution-Non-Commercial-No Derivative licence. The downloads are PDF-d, can provide them in any formats OpenOffice can cope with if you bung me a comment. NB none of the names, email addresses, geographical addresses, or other contact details on there are my own, please don’t try to get in touch with me on them because it will just confuse people, if you would like more info please bung me a comment instead.

Mar
14

I’ve been listening to a very interesting programme on BBC Radio 4, about dyslexia.

There’s some interesting comments from Prof Nicholson (co-author of the ‘Balsall Common’ DORE studies). This particularly discusses the development, uses, and limitations of the ‘Dyslexia Screening Test’ which Prof Nicholson developed, & which is used as a test of progress in the DORE research which I have read.

Prof Nicholson: ‘You would normally try to include a few more than necessary … children with hearing impairment, dyspraxia … if we were starting again we would call it something else’.  (My transcript - I don’t type that fast, may not be word-for-word). He also talks about the bead-threading & ‘postural stability’ aspects of the DST.

There’s a bit from Prof Snowling, a discussion on phonics of dyslexia in other languages, and a description of multi-sensory phonics teaching.

The programme is part of a series called ‘Am I normal?’ & also discusses the ethics & technical aspects of testing for developmental disorders in an accessible & informative way. It’s well worth a listen, but unfortunately will only be up on the ‘Listen Again’ section of the BBC website for another few days, and I’ve not been able to find a more permanent copy or transcript. The next programme will be on Dyscalculalia, broadcast 18 March, 9pm, and repeated on the 19 March at 4:30pm.

(BTW, sorry for lack of recent updates - too many exams!)

Jan
24

DORE have chosen to distribute their news of a ‘Major Autism Breakthrough’ via the doubtless-estimable Leamington Courier.

Now, I’m all for the public understanding of science, and particularly advances in educational psychology, or I wouldn’t be writing this blog.

However, publishing science by press-release to local papers first is Not On, particularly when said science could influence desparate people to hand over a lot of money to you in the hope of a ‘cure’.

It’s not OK to say ‘The Dore Clinic has achieved massive successes while working with 1,000 patients suffering from the symptoms of high-functioning autism’, when the article goes on to say ‘In addition 56 people who had been formally diagnosed as suffering from autism have now completed the programme’.

So, how many people with an actual diagnosis of Autistic Spectrum Disorder (ASD), given by someone qualified to do so, were actually helped? There’s a lot of difference between the reliability of research on 1000 people, and on 56. If your child is diagnosed with an ASD, then the results of the 56 are a lot more relevant than 1000 people who may or may not have had some ASD traits, which are not uncommon within the general population and particularly amongst people with PDDs.

How were these people helped? We don’t actually know. The paper doesn’t seem to have been published in a journal, or made available on a DORE website, as far as I can tell (I’d love a copy when it does show up). What does ‘expressed emotion’ mean in practice, and how do you measure it improving?

‘Of this number 100 per cent showed improvement across a battery of cognitive, literacy and motor tests’ looks good but doesn’t mean much. If everyone scored higher on standing on wobble-boards & throwing beanbags post-DORE, that would count as an (unsurprising) improvement - but it would not necessarily help people much in their everyday lives. We also don’t have any demographic data - if most of the group are young, you would expect them to get better at things over the 18 months - 2 years DORE usually seems to take.

We have no information on drop-out rates. This is important, because people who don’t see an improvement will be more likely to drop out. If half of people who perform below average (so 50% of the sample) drop out, overall scores will improve - even if any ‘improvement’ or ‘getting worse’ was completely down to normal variation. It depends on how they’ve done the stats, but if you assume that the most severely affected to start of with will be more likely to drop out (& it’s not hard to see that someone with particularly problematic ASD symptoms might be less able to keep up regular daily exercises), and their scores are included in the initial but not the final groups, this makes matters even worse. This is why publishing your data & stats is important. (BTW, does anyone know drop-out rates for DORE? Unofficially I’ve heard 50%, but I’d appreciate info).
Again, this study does not seem to have a control group - so again you can’t tell what was just normal progression with time, what is non-specific effects which could be obtained by telling the family to pat their head & rub their tummy for 15 minutes twice a day as opposed to anything to do with DORE or the cerebellum specifically. ‘Doing something’, giving a child lots of attention, raised expectations, etc, will all have very real effects on a person & their family. We also don’t know what else they’ve done. I was interested to find that it’s not uncommon for DORE to suggest 1:1 more conventional tuition alongside the programme - so looking at studies of people in the ‘real world’ doing DORE then the question isn’t so much ‘How does DORE compare to doing nothing’ as ‘How does DORE & extra 1:1 help compare to doing nothing?’.

The point of peer-review is that experts in the field can look at a paper and correct mistakes before it goes out for public consumption. The point of publishing your full methodology & results is so that people can read them for themselves and see what you did, decide if you did it right, and maybe do it again to see if the same thing happens. Publishing unreviewed press releases with hyped claims is irresponsible. Not telling people exactly what you have done, what you found, and how you measured it, doesn’t allow them to weigh up the research for themselves.

Incidentally, some of the language used in the newspaper article is - rather outdated & patronising to say the least. I’m hoping that’s due to staff on a local paper not being used to covering disability-related stories, but ‘high-functioning autistic cases’ don’t exist - people with ASD do. They’ve also managed to mention ’suffering’ seven times in a short article. I would strongly suggest a look at the NAS on ‘What (not) to say about autism’.

National Autistic Society’s rather noncommittal response to DORE .

I’ve heard of ‘publish or perish’, but this is getting daft. If the research was as good as it says, Nature Neuroscience at the very least would be falling over themselves to get their hands on it. It would be huge & deeply exciting news. The front pages of broadsheet papers would doubtless be devoting many inches. So why do DORE feel they need to publish this first in an obscure local newspaper, if the research is that good or the findings that exciting?

Jan
23

THIS IS NOT SOMETHING I HAVE WRITTEN. Most of this post is copy & pasted. I am reproducing it here because I do not like legal threats being used to silence people. Argue with evidence, not lawyers.

From The Quackometer blog, these first two posts have attracted grumpy legal-type letters:

Right Royal College of Pompous Quackery - Dublin
Thursday, September 28, 2006
I had to share this with you. Following on from my recent Quack Word ‘Doctor’ blog, I came across the Royal College of Alternative Medicine (RCAM) , a Dublin based - well, I’m not sure quite what it is…

What caught my eye was just the shameless aggrandisement of the site. It is quite hilarious, if not a little repetitive at times. Calling yourself ‘Doctor’ is somewhat pompous when all you have done is paid for some international postage. However, the man behind RCAM has absolutely no shame and titles himself as the:

Distinguished Provost of RCAM (Royal College of Alternative Medicine) Professor Joseph Chikelue Obi FRCAM(Dublin) FRIPH(UK) FACAM(USA) MICR(UK)

Wow! Probably, just Joe to his mates. Naturally, when you Google the qualification FRCAM(Dublin), there is only person who appears to revel in this achievement. I’ll leave the rest as an excercise for the reader.

The distinguished provost looks like he is just another pseudoscientific nutritionist, his spin being “Nutritional Immunomodulation”. This is obviously a lot more clever than Patrick Holfords mere ‘Optimum Nutrition’, but having only one ‘omnipill’ is probably a poorer commercial decision that Patrick’s vast range of supplements.

Obviously, Professor Obi has had a few problems with what probably amount to bewildering comments about his site as the legal threats and press releases concerning his ‘ethical’ responses to criticisms cover more space than anything else. ‘Ethical’ is a favourite word on the site.

The most recent press release states,

7th September 2006 : The Distinguished RCAM Provost, Professor Joseph Chikelue Obi FRCAM(Dublin) FRIPH(UK) FACAM(USA) MICR(UK) has formally accepted appointment as Chief Professorial Examiner for the Doctor of Science (DSc) programme in Evidence Based, Alternative Medicine (EBAM) of a highly respected International University in one of the British Commonwealth Protectorates.

This new qualification is primarily aimed at Medical Graduates, Physicians, Surgeons, Pharmacists, Dentists, Osteopaths, Chiropractors, Opticians, Wellness Consultants, Herbalists, Acupuncturists, Naturopaths , Healers, Podiatrists , Chiropodists , Scientists , Healers ,Therapists, Homeopaths, Chinese Medicine Practitioners and Nurses wishing to ethically upgrade their current Qualifications in Alternative Medicine over an exceedingly intensive 12 - 36 month period of study.

British Commonwealth Protectorates? Could that be Dublin?

I really have no idea what this organisation is all about. But it looks like it could be getting quite big soon…

RCAM currently has International Vacancies for One Million (1,000,000) ‘Foundation Fellows’ (’Movers and Shakers’) ; who will independently play a highly pivotal role in diligently mentoring (and regulating) it’s future Global Membership.

So if you really think that you seriously have what it takes to become a ‘Leader’ in Alternative Medicine , then (perhaps) RCAM may definitely be exactly what the Doctor ordered for you.

One million. That’s a lot of quacks! And they are just to mentor (and regulate) the wider quack membership! This man has ambition.

The Big J really hates real doctors. This is his most recent press release…

RCAM would like to warmly commend the various Chieftans of the National Health Service of the United Kingdom for ethically and appropriately ignoring utterly misguided calls (from a rather amusing Group of thirteen Clinical Yestermen) to compel Hard-Working (and Tax-Paying) British Citizens to additionally pay for Life Enhancing Alternative Medicine Interventions out of their very own pockets - rather than get such treatments free via the NHS. RCAM would like to also categorically state that such exceedingly flawed ‘G-13′ demands that the National Health Service of the United Kingdom expediently abandon Alternative Medicine altogether (in total favour of Conventional Medicine) be diplomatically treated with the very utmost contempt which such unguarded verbal flippance duly deserves ; as none of these 13 ‘Eminent UK Scientists’ behind such calls has professionally attained Globally Acceptable Fellowship Qualifications in Alternative Medicine and as such cannot be deemed competent enough to make such sweeping ‘Shilly-Shally’ statements about the noble independent specialty of Alternative Medicine.

RCAM therefore publicly advises the General Public to lawfully go about their normal Wellness-Seeking Behaviour as usual - without any unwarranted prejudice or fear resulting from such highly self-serving, morally unethical , abjectly crude , totally unprofessional, utterly unstatesmanly, morbidly barbaric, wantonly uncivilized, profanely undemocratic and unspeakably sacrilegious perpetual affronts on the therapeutically formidable institution of Alternative Medicine.

Now, I do not have ‘Globally Acceptable Fellowship Qualifications’ in Santa Clause Studies to know he does not exist. But hey. I must be a morbidly barbaric and profanely undemocratic, unethical duck.

So, struggling around the acres of pomposity I find one place where Prof Joe might be making some money. You can call him to seek his wisdom, after pre-booking an hour’s slot (and handing over your credit card) for a mere 300 Euros. Alternatively, you can pay by the minute on the contact line for a trifling $10 per minute.

Its going to cost you $20 just for Joe to say Hello and to read out his numerous titles, qualifications and names. Not bad ‘ethical’ work.

Ethical Quackery, the Monarchy and Kate Moss
Thursday, October 12, 2006
No, this is not about our Defender of Quackery, our Quack-in-Chief His Royal Quackiness, Prince Charles, but about the Distinguished Provost of the Royal College of Alternative Medicine, Professor Joseph Chikelue Obi. And yes, it is just a rather lame story written solely to get a picture of Kate on my blog.

I’ve written a rather lazy blog on the distinguished professor before that was just a bit of a gawp at his quacktastic website and what looks like a health phone-line scam.

Well, I’ve done a little more digging with Google and it has revealed a few quack gems. It has been pretty hard work, since Google returns some 6,000 pages, the vast majority just appears to be Prof Obi’s self-promotion. However, if you persist in digging a few interesting facts turn up.

So, what has the little black duck found out about the “most Controversial Retired Physician and ‘A-List’ Medical Celebrity, Dr Joseph Chikelue Obi”?

Here we go…

1. The Irish Independent reports that his college does not exist at the Dublin address given on the web site. There’s a surprise! It’s just a front.

2. The Independent goes on. “In January 2003, he was suspended by for serious professional misconduct at South Tyneside District Hospital. Among the allegations made were that he failed to attend to patients, wrote strange notes about colleagues and at one point gave a dating agency phone number to a psychiatric patient.”

3. He was being investigated by the police for taking thousands of pounds of a 58 year old woman to in order to cure a long standing illness.

4. The GMC strike Dr Obi off their register for “serious professional misconduct”. So much for him being retired.

5. On another tack, Dr Obi has been involved in a little cyber-squatting. This looks as if it took place while he was a doctor - always after a few quid!

6. Since then, now self-titled Prof Obi, a few new avenues have been opened, including trying to entice Kate Moss away to one of his ’safe-houses’ in Ireland. Hat’s off!

He is quoted as saying:

“Under the European Convention on Human Rights, Miss Moss still has fundamental rights, just like anyone else out there, and as far as I am concerned, she is not guilty of anything until an Ethical Jury says so.”

(I mentioned before that ‘ethical’ was one of his favourite words.)

7. Prof Obi has been developing a Penis Enlarger (watch out Kate) that his own Royal College has now endorsed.

8. At least one person (out of the targeted million) has paid Prof Obi the fees for his college to accredit them. Dr Michael Keet (8 Canards) of the Central London College of Reflexology handed over ‘hundreds’. Do we feel sorry for out-quacked quacks? I guess we ought to.

9. For those of you wanting to see behind the grand titles and see the real human being, Joseph lists his interests as Comedy in London, Whole Food Nutrition and Christian Music. On this ‘Meetup’ site, he describes himself as “Just a very ordinary guy . . .”. That’s nice.

10. His name appears very often on the blog Abolish The General Medical Council (GMC), often reporting something he has got up to. The blog describes itself as:

An ethical blog for those who publicly feel that the General Medical Council (GMC) should be Statutorily Abolished in favour of a Medical Licensing Commission (MLC) to solely register and revalidate Doctors who practise Conventional Medicine in the UK. The Blog also recommends that the GMC/MLC hands all disciplinary functions over to an Independent Clinical Tribunal (ICT) in keeping with the EU Convention on Human Rights ; to avoid (both) Institutional Bias and Multiple Jeopardy.

Oooh. There is that word ‘ethical’ again. And ‘European Human Rights’. No name is given for the blog author but the avatar is a portrait of the queen. Another apparent obsession of Prof Obi - royalty. Could the author be none other than the Professor himself, a little agrieved for his ticking off? I hope you all click through to the blog. Maybe we will show up in his stats and whoever the writer is can get in contact and confirm one way or another.

I rather hope it is, as the final thing I turned up would just be fantastic…

11. Is the Distinguished Provost of the Royal College of Alternative Medicine, Professor Obi now selling ethical ring-tones? I do hope so.

Watch out Crazy Frog! Here comes the Crazy Provost…

For completeness I am posting here an extract from the North East News, Evening Chronicle article linked to above.
In the article dated 21st April 2004 it states:

Long list of titles
Dr Obi uses a number of medical and professional titles online and claims membership of a long list of organisations.
These include FRCAM (Dublin), FRIPH (UK) FACAM (USA) and provost of the Royal College of Alternative Medicine (RCAM Dublin).
The Royal College of Alternative Medicine appears to be little more than a website. It is listed as a company at Companies Registration Office in Dublin but the phone number given is not in use. Fellowship of the RCA is available to buy from the site.
Dr Obi, originally from Nigeria, does not say where he did his doctorate in science (DSc) or when he joined the Royal Institute of Public Health (RIPH). No one was able to confirm whether or not Dr Obi was a member of the RIPH when the Chronicle contacted it.
Dr Obi says he is a member of the Institute of Clinical Research (ICR), a training body based in Maidenhead that sells membership online for £50.
He also says he is a member of the International Stress Management Association, which also sells membership online from as little as £30.
Dr Obi also claims to be a member of the World Medical Association (WMA), which sells annual membership via its website for 37 euros.
Events that led to failed career
August 2000 - Starts work as a senior house officer in the department of psychiatry at South Tyneside District Hospital.
January 2001 - Leaves following a complaint.
September 2002 - Registration suspended by the GMC for 18 months for reasons
surrounding his “fitness to practise” and “for the protection of the public”.
January 2003 - Dr Obi is found guilty of serious professional misconduct by a GMC hearing which he does not attend.
Obi is said to have made offensive and insensitive comments to psychiatric patients and failed to respond to his pager.
In a previous job in Harrogate it was alleged he failed to conduct an outpatient clinic and failed to properly treat a patient with a heart attack.
And in Pontefract he is said to have described a colleague as a “stupid cow”, spent an excessive time on a computer, and called a surgeon a liar.
August 2003 -Dr Obi launches a campaign to get elected to the North East Assembly, even though no referendum has been held. He describes himself as “North East Assembly Aspirant - Independent (non-aligned)”.
August 2004 -Dr Obi refused to speak to the Chronicle. His campaign website is closed down after he posted defamatory statements there.

A subsequent article entitled Shamed doctor quizzed was published on 15th September 2004.

It’s a pity the Quackometer’s web host, Netcetera, can’t be bothered to read about Mr Obi’s disreputable past.

On 24th August 2004, the Evening Chronicle had this to say about Mr Obi:

Avoid at all costs

Sacked for serious professional misconduct and his registration suspended by the GMC, Joseph Chikelue Obi is not, by any stretch of the imagination, the best man to be trusted with your health.

Yet the disgraced former health employee is free to peddle his dubious services on the internet.

Despite being booted out of his job at South Tyneside General Hospital, the shamed health worker is currently touting for business on the worldwide web.

And he’s doing very well out of it, thank you very much.

One desperate woman, unaware of his past, has handed over £3,500… and, not surprisingly, is now feeling even worse than ever.

Operating under the grand title of Professor Obi, it appears he is breaking no law and is free to sell health advice to anyone willing to part with their hard-earned cash.

He may be untouchable in the eyes of the law but morally he is surely operating on shaky ground. Is a disgraced hospital worker really the best person to be dishing out health advice?

If you’re thinking of taking up Mr Obi’s advice, we would advise you to read our story first. It may save you some money.

See also Banned Doctor Claims to Head College that Does Not Exist, and more ways to make money (£31/minute for downloading an MP3? That’s - odd).

Thanks to PV from whom I copied most of this. Pass it on!.

AGAIN, NEARLY ALL OF THE ABOVE IS COPY & PASTE. I did not write it. I just don’t like legal bullying taking over from rational argument.

Jan
17

I’ve been having an interesting & rather heated discussion on the DORE forums (I’m ‘psyduck’) about the infamous Reynolds et al (2003) paper which caused resignations of 5 academics from the board of Dyslexia (several of whom are teaching me this year), & particularly the Bishop (2007) critique.

I thought I’d link to the whole discussion rather than turning it into a blog post, as there’s not much point in my doing a ramble through the paper as it’s been taken to bits many times over by people better-qualified than me, & I’ve had a few official replies, including from Wynford Dore himself. Feel free to register & jump in.

Important references here:

Dorothy VM Bishop (2007)
Curing dyslexia and attention-deficit hyperactivity disorder by training motor co-ordination: Miracle or myth?
Journal of Paediatrics and Child Health 43 (10), 653–655.
doi:10.1111/j.1440-1754.2007.01225.x

Reynolds D, Nicolson RI, Hambly H. Evaluation of an exercise-based treatment for children with reading difficulties. Dyslexia 2003; 9: 48–71.

See also their follow-up:

Reynolds D, Nicolson RI. Follow-up of an exercise-based treatment for children with reading difficulties. Dyslexia 2007; 13: 78–96.
EDIT - a lot of the relevant papers appear to be available without subscription here, including both Reynolds & Nicholson papers and some of the critiques. I’d strongly recommend reading some for yourself, particularly if you are wondering about whether to use DORE. Hooray, I hate paywalls, everybody should be able to see the evidence for themselves to make up their own minds. This makes me a Happy Duck.
The programme transcript looks interesting & would be useful as an introduction or if you would struggle with a pile of research papers - full programme looks to be available but my computer’s not up to video so can’t comment.
Jan
14

This blog post has been a while coming, because I wasn’t too sure I wanted to write it. I’m not particularly interested in critiquing case studies, since all they really show is promising leads for future systematic research, without interesting methodological issues for me to get my teeth into. I particularly don’t like critiquing case studies of named non-anonymous individuals, especially children, and especially where there’s a ‘happy ending’ and maybe it would be more comfortable for everyone concerned to just leave things be - but this case has been publicised heavily by the people involved & is the basis of one of the most popular introductory books on homeopathy. My Mum took me to a homeopath for a year or so, & whilst her prescriptions didn’t seem to do anything, she was friendly & would have made a good counsellor, & the treatment wasn’t unpleasant. There isn’t medication for most Specific Learning Difficulties (SpLDs) or Autistic Spectrum Disorders (ASDs) & I’ve not heard of homeopaths suggesting that people should stop using behavioural support, social skills training, and other psychological interventions, & homeopathy doesn’t have to take a long time or be distressing for the child, so it’s not doing much harm.

This post isn’t about homeopathy, it’s about the limitations of single case-studies, & like much of the blog about how to read & understand the evidence. As with all case-studies all I can really do is offer alternative explanations for what I know of the case - which doesn’t prove anything any more than the original explanations did. But for such a heavily promoted case history, people should have access to relevant information to make up their own minds.

With that out of the way, here’s the case I’m looking at: A claim by John Melnychuk (http://www.paloaltohomeopathy.com/homeopathy.html) to have ‘cured autism’. In particular Amy Lansky’s son in her book ‘The Impossible Cure’ (http://www.impossiblecure.com/). [I'm not too comfortable with using a child's full name on the Internet, even though it's published in the book and a lot of personal information is on their website, so I'll stick to calling him 'M']. Unfortunately I’ve not been able to get hold of the book in the UK & can’t afford a copy from the US - if anyone would like to loan me one for a month or so I’d be most interested, & if you have read the book & can provide more information & clarification that would be most welcome. Meantime the fullest account I’ve been able to find is here: http://www.renresearch.com/ and here: http://www.renresearch.com/autism.html .

In outline the story runs something like this:

  • 1991 M born
  • ‘by age two, he was still not speaking. He knew the entire alphabet, could count to twenty, and could stack blocks like nobody’s business, but he did not know more than about 10 words’ ‘When he was two, we enrolled him in a 2-day/week 2-hour preschool program. At about this time, our nanny suddenly left without notice … Our new nanny was kind but, in retrospect, detached emotionally and probably did not engage with M very much.’ ‘he could not sit at circle-time unless held in someone’s lap; he would tend to wander off to other places in the classroom or to other classrooms; lowered eye contact; self-stimulation activities such as spinning; and unresponsiveness to questions. At the same time, he clearly showed signs of great intelligence. If he was engaged in something that interested him, he could sit for very long stretches with intense concentration. He could build complex structures with amazing skills of symmetry and balance; he also showed sophisticated strategic and dexterity skills at computer games. At age 2.5, when our usual nanny was gone for a month and a far more engaging replacement nanny stepped in, M finally began to talk more. It was single words, but it was a start.’
  • ‘As M approached his third birthday … we opted against having M tested at a highly-medicalized child development center attached to the university. Instead, we took him to see a respected speech and language therapist’ ‘Donna did not label M as autistic or as anything at all’ ‘we instituted several other changes’ ‘At age three, he finally built two-to-three word sentences. He was clearly more “present” than before’
  • 1994 ‘developmental/behavioral/language problems’, ‘mild autism, probably as a result of vaccine damage’, ‘M was making slow progress’ with a variety of interventions including speech & language therapy’ ‘1994, M continued with his speech and language therapy and, after testing, qualified for special education benefits’ ‘The teachers felt he was bright and merely a quiet child’ ‘M continued to make slow and steady progress in his speech therapy’ ‘echolalia’ ‘He could watch things on TV and perfectly imitate nuances in various characters’ behavior and mannerisms’ ‘M also showed an uncanny musical, dancing, and acting ability’
  • Jan 1995 ‘He began [homeopathic] treatment at age 3.5′ ‘During the interview, he got very upset because he didn’t successfully write “Mom” on a piece of paper the way he wanted to’ ‘for about 1.5 years’, ‘Two years later, you would never suspect he had been autistic’
  • ‘By the time he was five … For example, his language production continued to be awkward at times. In times of stress (e.g. if he was sick), he would still retreat into himself and utilize echolalia as a speech strategy. He was also still a bit hyperactive at times, not being able to sit in his seat through an entire meal.
  • Even now, at age six, all of this is still true of M, though to a lesser degree.’ - ‘1996 … he still has ways to climb to full recovery’ ‘M showed some decline in speech’ - ‘1997 … I am noticing a subtle decline in speech’

No doubt I’ll be accused of taking these out of context, so I really would suggest that you read the full story as linked to - I’ve cut & pasted the bits that jump out given my interest in developmental psychology.

First, a look at diagnosis. I don’t know much about how ASD are diagnosed in the USA, but in the UK then health visitors (~ community nurses who care for children & families in the gap between midwife & school nurse) will administer the Checklist for Autism in Toddlers, at 18 months (details here: http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1419&a=2226). This is not a diagnostic test, it is a screening tool to ‘flag up’ children ‘at risk’ for further evaluation, and as such will tend to be overinclusive - it is better for a child to be wrongly spotted as ‘possibly’ having an ASD & be sent for testing than for a diagnosis to be missed. It is difficult to make a definite diagnosis in young children, as ASD are diagnosed on the basis of social impairment, and typically developing young children may not be able to reliably demonstrate social skills, especially when faced with a stranger doing tests. The earliest sign of an ASD is often difficulty with ‘joint attention’ - child will not draw an adult’s attention to interesting things. Full diagnosis of ASD are made on the ‘Triad of impairments’ in social interaction, communication, & imagination. The DISCO & ADI assessments, structured clinical interviews which last for hours & involve both the person being diagnosed & a caregiver, which *can* be used for formal diagnosis, tend to be used only in children older than 3 (DISCO isn’t validated for under-3s, ADI has more questions after ages 3+, 4+ 5+). Although there is *fascinating* work going on into screening & diagnosis as early as the first year, using tests based on things like attention shifting & sensory processing, as yet these aren’t specific or researched sufficiently to be used in clinical practice. There’s more on types of screening test here: http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1419&a=3280 .

Patterns of ASD diagnoses are an interesting thing. With the idea that ASD are a spectrum has come the idea of the ‘broader phenotype’ - basically people who share some characteristics of ASD, but not enough so (or function too well for) a diagnosis. There’s some interesting ideas about emphasising/systemising (decent newspaper article here: http://www.guardian.co.uk/print/0,3858,4649492-111414,00 , academic intro here: http://www.autismresearchcentre.com/research/project.asp?id=6 ) the idea being that people with ASD will be on the far end on ’systemising’, but that everyone will be somewhere on the line of being more interested in people vs being more interested in things (this is a huge oversimplification, I’d really suggest looking at the Autism Research Centre which will point you to useful papers & explanations: http://www.autismresearchcentre.com/research/percog.asp). [Incidentally, I was experimented on for some of the early research into emphasising / systemising whilst at 6th form - and yes, Prof. Baron-Cohen really is 'Ali G's' cousin, but he is the stereotype of a quiet Cambridge academic, & gets upset if you mention it].

There’s also the idea of ‘assortative mating’ - with increasing social & geographical mobility & greater mate choice, high-systemisers are more likely to end up having children together, and those children are more likely to show high-systemising traits associated with ASD. This is supported by findings such as more parents & grandparents of children with ASD being engineers, and ‘clumps’ of ASD diagnoses around places like Cambridge & ‘Silicon Valley’, where many people work in technical occupations where being high-systemising is an advantage (this article might be interesting, though it gets a few bits wrong: http://www.wired.com/wired/archive/9.12/aspergers_pr.html , if you have ATHENS access try: http://adc.bmj.com/cgi/content/full/91/1/2 ). Both Amy Lansky and her husband have PhDs in CompSci & technical careers, their other son is studying computing at Stanford, and according to information on the family’s home page M enjoys computer animation & attends a school where ‘Education in mathematics and computer science is particularly strong’. Being a high-systemiser can have many advantages, and does tend to come with ‘broad phenotype’ ASD traits - Amy Lansky mentions things like the ability to concentrate for long periods and excellent visual search pattern-matching skills. These things would suggest a genetic rather than vaccine-related cause for M’s difficulties, and also suggests that M is flourishing in an environment which values systemising skills - no bad thing, but also an environment likely to bring out the skills and minimise the weaknesses of someone with a broad ASD phenotype.

The ‘broad phenotype’ of ASD refers to the likelihood of relatives of people with ASD to have sub-clinical ASD traits - not quite far enough along the spectrum to be diagnosed or to cause problems, but fairly subtle differences which might be picked up with psychological tests designed to measure traits associated with ASD such as field-independence (the ability to pick a small part out of a complex pattern) or rapid attention shift, or maybe somebody who has subtle difficulties with interpersonal functioning or ASD-like patterns of developmental delay, strengths & weaknesses, but by definition are able to function well enough to avoid a full diagnosis. People with a ‘broad phenotype ASD’ aren’t always going to be significantly socially impaired, particularly if they are intellectually able to compensate for social difficulties, or if they have a supportive environment which values their strengths (I’d probably qualify for ‘broader phenotype’ myself with several diagnoses of ASD in the family, & recieved educational & behavioural support when younger for it). Given a supportive family, lots of attention, speech & language therapy, and a social & educational environment building on what he’s good at, there’s no reason why M couldn’t have overcome early difficulties to reach the same level as his peers. I’m delighted he seems to be doing so well, but homeopathy isn’t necessary to explain this.

M apparently started homeopathic treatment age 3 1/2, without any mention of a formal ASD diagnosis by any professional at that time (is this in the book?). I would be wondering if M scored above the cut-off on a screening test, which would indicate a need for further investigation but might suggest to worried parents that he may have ASD, but wasn’t actually fully diagnosed. Before & during treatment M was receiving speech therapy, extra parental input, spent time at a Montessori school (where the structured environment may be easier for children with ASD), and apart from speech seemed to be developing at or ahead of schedule in many areas (eg writing, knowing the alphabet). The only thing that really stands out from the accounts is possible language delay, remedied by lots of formal & informal behavioural support. So just how language-delayed was M anyway? As a 2-year-old, he knew ‘about 10 words’, as well as the alphabet & counting to 20 - which I reckon is maybe 50 ‘words’ in all. 50 words is around what you might expect for a typically developing child of maybe 18-24 months. Between 2-3 years, you’d typically get a ‘language explosion’ where children suddenly acquire new vocabulary daily, with sentence length increasing from around 1 to 3 words over the course of the year. M ‘began to talk more … single words’ at about 2 1/2 years, with a ‘more engaging’ nanny. ”At age three, he finally built two-to-three word sentences’. This was when M was taken to a speech therapist. At 3 1/2, M could write. At four years old, ‘The teachers felt he was bright and merely a quiet child’. [Age 5 1/2] ”you would never suspect he had been autistic’. There is some suggestion of subtle ongoing speech problems, but not clearly described & sub-clinical. The Lanskys are clearly an academically able family. I would wonder if perhaps M’s language development was never so far off the normal developmental trajectory, but perhaps slower than other family members, giving them cause for concern. For more on speech milestones see: http://www.childdevelopmentinfo.com/development/language_development.shtml, http://www.nidcd.nih.gov/health/voice/speechandlanguage.asp#mychild

Diagnosis by Internet is a really stupid idea, even if I was qualified to do so, which I’m not. However, I haven’t been able to find anything from Amy Lansky’s accounts on the Internet which suggests that M was ever that far from a typical development curve. There’s no accounts of professionals other than Melnychuk who saw M having diagnosed him with an ASD at the time, and teachers who have knowledge of typical child development thought M was ‘a quiet child’. I’m not, repeat not, accusing Amy Lansky of lying. ASD are complicated & and suspecting your child might have one must be scary. Being told by Melnychuk, who according to his own website has no qualifications in conventional medicine, psychology, or fields other than homeopathy, that one’s child is ‘autistic’ must be distressing, particularly given that other case studies of autism provided by Melnychuk do not suggest that he recommends behavioural therapies to help manage symptoms of ASD, or supportive counselling for distressed & suicidal parents. Giving M homeopathy was followed by developmental progress (as you’d expect unless homeopathy was harmful - typical children show developmental progress, often stepwise), and giving M homeopathy when he was having difficulty was followed by progress (again, it is to be expected that children will progress slowly at times & faster at other times, and doing anything not actively harmful during times of slower progress will be followed by faster progress).

The problem with case studies is that they can’t usually prove or disprove much. So, how about research going beyond case studies? The only hit I can find on Medline for the use of autism in homeopathy is for ‘homeopathic secretin’ in the British Homeopathic Journal, which didn’t seem too relevant & found a non-significant worsening of symptoms during treatment. (Robinson, T.W. 2001. Homeopathic Secretin in autism: a clinical pilot study. Br Homeopath J. 90(2):86-91).

A Cochrane metanalysis of four studies of homeopathy for ADHD found ‘The forms of homeopathy evaluated to date do not suggest significant treatment effects for the global symptoms, core symptoms of inattention, hyperactivity or impulsivity, or related outcomes such as anxiety in Attention Deficit/Hyperactivity Disorder.’ (Coulter MK, Dean ME. Homeopathy for attention deficit/hyperactivity disorder or hyperkinetic disorder. Cochrane Database of Systematic Reviews 2007, Issue 4. Art. No.: CD005648. DOI: 10.1002/14651858.CD005648.pub2) - seems to be free to the public at http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD005648/frame.html , so please read the evidence for yourself & make your own mind up.

I guess I’m going to get a lot more stick from this post than most things I write. Again, this isn’t about homeopathy, it’s about how to read & interpret a case study, so people can evaluate the evidence for themselves. If anyone can lend me a copy of ‘Impossible Cure’, or knows anything relevant to the case that I’ve not picked up online, I’d be most interested - thanks.

This case study is a pleasure to read in many ways. M is obviously a happy, healthy young boy, who has been given every opportunity to thrive & seen through any difficulties by parents who care about him very much. It’s a success story in terms of appropriate early intervention & a supportive environment in enabling children with specific learning needs to not just cope but find their ‘niche’ and thrive, not just in spite but even because of their differences. There should be more stories like this.  It should be just as ‘OK’ to come under the ‘broader phenotype’ of autism as to be very chatty or artistic or athletic - it’s equally within the realms of normal human variation and should be equally encouraged & accomodated. But this case does not show that homeopathy made M ‘normal’, and it’s not fair to people who struggle with more severe ASD symptoms to pretend that there is an easy way to ‘fix’ them, even if that was a good idea.

Jan
14

This post is a bit outside of my usual areas of interest, so there’s bits of background that I’d really appreciate comments on. It does give the chance for a nice introduction to some interesting areas of psychological testing & health economics, and it’s even somewhat topical, so here goes.

I’m a regular listener to ‘The Archers’, a long-running radio soap opera on BBC Radio 4 ‘An everyday tale of simple country folk’. I’m maybe 40 years younger than most of the demographic, but blame that one on Mum.

An ongoing storyline is that one of the characters, ‘Jack Woolley’, has dementia, probably Alzheimer’s. In Monday’s episode, he was given what appears to be the Mini Mental State Exam ( http://www.patient.co.uk/showdoc/40000152/ ), a psychological test used to measure the progress of dementia. The examining doctor also talked about his medication, though without specifying what Jack was taking. Episode here if you are interested: http://www.bbc.co.uk/radio4/archers/catch/this_week.shtml?mon

Obviously, the full 10-minute test wasn’t on air in a 12-minute episode, but parts were. Now, I’m not trained to work clinically with patients, or to administer the MMSE, but I’ve had a go at scoring what there is.
Orientation - Jack needed a bit of prompting to say where he was, but he eventually came out with ‘Hospital, in Borchester, England’ - 3 points of 5?
Registration - here Jack had to remember 3 words (’Apple, picture, table). This took him 2 attempts, first managing two words, then all three. 3 points of 3?
Attention & calculation - Jack had to spell ‘WORLD’ backwards (a working memory task - more on that in my next post), but he only got as far as ‘D’ - is this 1 point of 5?
I’m not too sure on the scoring for these tasks, & we didn’t get an overall numerical score, only ‘in line with what we would expect’. But messing around with percentages, and assuming that Jack did equally well on all areas of the test, Jack would have scored 16 out of 30. This would put him just over the border from ‘moderate’ into ’severe impairment’.

Whilst throughout the episode Jack is somewhat confused & disorientated at times, rather obviously has problems, and is ‘wandering’ problematically at times, he is able to talk, interact with people, do basic self-care for himself, & isn’t nearly at the worst dementia can do to people. I have worked in a few elderly care homes and watched my grandfather go steadily downhill, and at the worst dementia can leave people completely unable to communicate, having no idea where they are, not recognising close family, doubly incontinent, etc. It’s horrible. The problem with using the Mini Mental State Exam alone to score the progress of dementia is that there’s a long way to get worse from a score of ’severe impairment’, and even a score of 0 can cover a fair range of problems. It doesn’t adequately differentiate between people who aren’t ‘in the middle’.

This effect of not adequately differentiating between people at the bottom of a measuring scale is called by psychologists a ‘floor effect’. Imagine if you wanted to test the fitness of a group of ‘couch potatoes’, and did so by making them all run a mile. Now imagine you stopped timing after 7 minutes. Most of the group would not have got to the end in that time. Even though there would be an important difference in fitness between those who took 10 mins & those who took 30, your test would group them all together as having the lowest possible score - this is a ‘floor effect’, because the test is too hard.

You can also get ‘ceiling effects’ - for this imagine you have a group of PhD physicists, and gave them all a lower tier GCSE Maths paper. Even though some of the physicists would be cleverer than others, they would probably all still get the highest possible score of a C, because the test is too easy. The MMSE also has ceiling effects, because most people will need to loose a fair bit of function before they start having problems with the simple tasks on it.

NICE (National Institute for Health and Clinical Excellence) basically decide whether new treatments provide enough benefit for their costs to be prescribed on the NHS (oversimplifying massively here, sorry). They look at Quality Adjusted Life Years, QALYs, which are a measure of years of life gained from a treatment, adjusted by the quality of the life gained - so if with one intervention you live for an extra 10 years in severe pain, it might be more worthwhile to have an intervention which will give you an extra 8 years of pain-free life. The way they do the adjustments is fascinating, but perhaps for a different post. More on QALYs here: http://www.library.nhs.uk/healthmanagement/ViewResource.aspx?resID=123545 [there's a brilliant BMJ article somewhere written by someone from NICE explaining this in more detail, but I can't seem to find it - anyone?]

QALYs are rationing, although the government don’t really like to say so. NICE decide how much a QALY is worth, and (at least in theory) try to spend the same amount per QALY across every illness. Last I heard, a year of good quality life was worth ~£30-35 0000, though that’s probably a bit out of date & an oversimplification. More than that, and the money could be better spent elsewhere - which is why all the fuss about prescribing things like Herceptin, ‘cos they cost too much per QALY. (I’ll scrimp on the general ethical debates around QALYs - try here: http://www.ethics-network.org.uk/ethical-issues/resource-allocation/ethical-considerations for some points).

Alzheimer’s disease isn’t curable. There are some drugs which might be able to slow its progress. I’ll skip the details though again they are rather cool (see here for starters: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147 ). However, there has been a lot of argument over whether they can be prescribed on the NHS, as they cost a lot per QALY. NICE decided that only those with ‘moderate’ dementia should get acetylcholinesterase inhibitors. This is because people with moderate dementia show the biggest change on the MMSE when given the drugs. This could be because the drugs work best in moderate dementia, or it could be because of the floor & ceiling effects in the MMSE - people who have ‘mild’ dementia quickly get up to the top score and can’t go further, or people with severe dementia get a lot better but still don’t manage to score much more than bottom on the MMSE.

There’s two big issues here really. Firstly, is the MMSE really measuring improvements properly, or is lack of measurable improvement just a task artefact? That’s the sort of thing which make psychologists very interested. Is the MMSE a valid measure of changes in early & severe dementia?
The other issue is much bigger and more complicated, and it’s around what & how we pay for healthcare. Dementia is a complicated one. Because people with dementia will eventually need very expensive residential care, it might be worth spending more on drugs to save on care. But then you get into arguments about who pays for care - in England then ’social’ care, help with things like eating & toileting, is means-tested so does not always come from NHS budgets. There’s also issues around how much we should pay for health overall, the balance between preventative measures and treatments, how worthwhile is it to develop expensive new drugs when most people can’t access the ones we’ve got - it’s a lot to think about.

Anyway, I’m surprised & slightly disappointed that Jack is still getting his medication on the NHS, & despite being rather well-off seems to be coming up for social help too. ‘The Archers’ has a special place in British life, and I suspect that were Jack not to be getting help then questions would be asked in Parliament. At least it would get people thinking and talking about this sort of thing - it’s an uncomfortable thing to think about but too important to be swept under the carpet because of that.

Comments welcome, I’m sure some of you will know much more about this than me.

Jan
14

When I first heard of DORE, I thought they sounded like a good idea. There is not a lot of research into dyspraxia in particular (which I have), so anything that produces good results would be very welcome.

The problem is that they keep publishing papers which are a bit rubbish really, with silly mistakes, and where the results don’t quite say what their write-up implies. They charge a lot of money for the treatment, & it requires much time & effort from children & parents. I did lots of chucking beanbags around as a Duckling, I know how pants it is to be made to stand on one leg throwing beanbags into shoeboxes & being reminded how rubbish you are every day while the other children are out playing or learning things that are actually useful. It has never been useful for me in my adult life to try to throw a beanbag into a shoebox with the wrong hand standing on one leg. These things are not harmless, and should be properly researched before being sold for a lot of money to desperate parents & children who already have enough to deal with.

If DORE was the ‘Miracle Cure’ they claim in a book title, it would be fantastic. So why is DORE research so badly done & inadequate? They have money, they have people doing the programme to test, so if it works & they want to encourage its wider use, they should do a better job of proving it.

The latest research is here:http://www.dore.co.nz/researchscience/DORE_MATCHED_DATA_STUDY%20.pdf (note - the research was deleted from the first place it went up about a week after I blogged it; in case it moves again or if you just don’t like PDFs, see the cached version).

Quick summary for those of you with better things to do than read a point-by-point ramble through a 30-page paper. This research was not designed in such as way as to be able to show that DORE works. There is no control group, no attempt to look at whether their measures correlate with real-world success in school etc, no follow-up, and only three in five of their participants were actually diagnosed with Dyslexia. Even if you take the research on its own terms, it shows that for most people then DORE doesn’t work - only the bottom few % showed any improvement, and this was mostly to do with stuff like bead-threading, not measures of reading and writing. Without a control group it is not possible to tell whether this would have happened anyway, for example as the children got older or if they were being given extra help in school too. It is not surprising if children get better at things over time, especially if they have parents who are willing to put a lot of effort & money into helping them learn.

The Holfordwatch blog has had a look at this paper too, in perhaps a slightly more amusing fashion than my usual undergrad plodding through (I have to read lots of papers on Dyslexia every week because I am studying it as part of an an undergraduate psychology course). They can be found here: http://holfordwatch.info/2007/11/23/dore-research-paper-shows-that-dore-is-not-useful-for-a-substantial-proportion-of-potential-clients/

I am feeling particularly geeky today, so I have read it all & put down a point-by-point criticism. I might have missed things or got them wrong, please add a comment if you think I have.

Authors:

Wenjuan Zhang: http://www2.warwick.ac.uk/fac/sci/statistics/staff/research/wenjuan_zhang
‘Her involvements in recent consultancy projects include contracts with LSC, DDAT, Dft, Education Walsall, and MG Rover’.
I haven’t heard about her before. Seems to have just done the stats. Now, Maths is not my strongest point, but can any readers please explain why they are using ‘deciles’? The stats are put together in a way I’m not really familiar with, but that could be just because I am but a humble & not-very-clever undergrad who does not yet know enough about such things.

Professor David Reynolds: done lots of pro-DORE sresearch, caused mass resignations from the editorial board of the journal ‘Dyslexia’. Has been previously heavily criticised for financial links to DORE. He’s published similar-sounding stuff before:
http://www.dyslexiaaction.org.uk/Page.aspx?PageId=21#Dore.

Dr Roy Rutherford. He is the ‘Global Medical Director for Dore’ http://www.dore.co.uk/KeyPeople.aspx (it is rather odd for an organisation which claims a miracle cure for dyslexia to have quite so many spelling and grammatical mistakes on that webpage, including confusing homophones, but there you go).
Now, I should admit that I have not been so keen on Dr Rutherford since he called one of my lecturers a ‘very aggressive lady’ in the Times newspaper, without actually having met her. http://www.timesonline.co.uk/tol/life_and_style/health/child_health/article1344439.ece

My first grumbles on a very quick skim-read through the paper:

The usual gripes about them using their own tests. Some of them are fairly standard assessment tools, some aren’t.

‘More than 60% of subjects in this cohort have been previously
assessed by a specialist and diagnosed with dyslexia prior to
attending Dore’. Hmmm - 40% haven’t? Only 50% of people in my final-year project will have been diagnosed, but I would expect to get different results on a range of measures - some of them similar to what DORE use - for the 50% who do have a diagnosis & the 50% who don’t.

‘Currently between 70-80% of Dore clients complete the program and receive final DST testing’
Have to check, but I expect this is poorer follow-up than you’d get with a school-based programme (the usual for phonics research), & obviously the people who drop out will be more likely to be the ones showing no improvement.

‘In fact in the literature on interventions for literacy the opposite is found to be the case i.e. that those with the more severe deficits in both cognitive and literacy performances make the smallest responses in terms of literacy improvement. Thus even when we look at relatively crude data assessing dyslexia based changes with Dore it is immediately obvious that the reverse is true.’
??? which literature and which interventions are they looking at ??? Their paper has no references at all. I have to put lots of references in my work, and only some poor underpaid postgrad will ever read most of it. I wonder what happened to their references?

p11: ‘It can be seen that looking at the data in this way seems to suggest that there are highly significant improvements is a range of important cognitive skills related to dyslexia but not in performance
in literacy based tests (OMR, TMS, NWR and OMW).’
This is what you would expect if the intervention did not work. People get better on the things they are trained on, but this does not make them better at the things they aren’t trained on but are actually important. (though later p12 onwards they claim actual improvements in useful endpoints for lowest few %).

p11: ‘Using this overall analysis literacy scores hold their own over time which is not what is usually seen in practice where there is a tendency to decline down the scale with time and subjects tend to fall further and further behind their peer groups.’
This does not happen using an effective intervention, where catch-up can take place - showing DORE performs worse than phonics [I'm most familiar with phonics-based approaches so I will use them as a comparison - other ideas are available...]

p17: ‘Even taking this into account we still see significant improvements in most areas with occasional exceptions in one minute reading and spelling (age group 12.5-16.5) and nonsense word passage (age groups 6.5-9.5, 9.5-1.5). One minute writing does not show much change throughout the age groups but the mean performances are high initially and well into the normal range.’
So some of the most ecologically valid stuff is what isn’t changing?
‘Ecological Validity’ is not about making sure you print your reports on recycled paper. It is a term psychologists use to describe how well what you are measuring fits with the real world. So if you say that your results show that children have improved by 2 academic years in just 6 months, but the only thing you have used to test them on is a block design task and they are not getting better marks at school, the block design task would have poor ecological validity because it would not relate to anything which is important in the real world. It is quite easy to teach people to do better on the sorts of tests used in psychological research. A bit of practice often does the trick on its own. However, making improvements in real life is what’s important, and how much you can write in one minute (how fast you can write) may be an important skill in real life - more so in most careers than bead threading.

p19: ‘It has been recognised in these peer studies that tests of full reading skill (i.e requiring reading of word passages and comprehending written language) that subjects using Dore are shown to make considerable progress. We expand on this whole issue here as it has caused considerable debate amongst reading academics and has led to inappropriate criticism and ignoring the highly positive outcomes of the Dore research work so far.’
Suggest you read the whole paragraph. Not utterly implausible, but would like a reference or further work to back this up before accepting. Taking such a personal tone isn’t usual in an academic paper - looks like someone has hurt their feelings?

p19: ‘We can also announce that the majority of children making up this group have been previously formally diagnosed with dyslexia. This fact rather discounts prior criticism of the peer reviewed studies where not all children had a previous formal diagnosis.’
A 60% majority is still pants. Diagnosed by who? ‘Peer reviewed studies’ are all very well, but when your ‘peer reviewed study’ leads to 5 resignations from the board of a prestigous journal and 9 published rebuttals, maybe quite a lot of ‘peers’ disagree with you.

p20: ‘Postural stability forms part of the battery of assessments as many studies show that balance and posture can be impaired in dyslexia. In fact Stoodley showed precision balance performance and reading performance are linked across the spectrum. Balance is of course a fundamental area of cerebellar control.’
Co-morbidity between dyslexia & dyspraxia (often finding both in the same person) does not mean that there is one underlying dysfunction. This is a 3rd variable problem. For example, both dyslexia and dyspraxia could come from a genetic or developmental problem with brain development, but different areas of the brain could be affected in both. Assuming that they are directly linked is like saying that meningitis and head injury are the same thing because they share the symptom of headache. Having a motor control problem does not automatically imply ‘cerebellar dysfunction’.

p20: ‘This test used here is a rather crude screening tool useful for more significant postural deficits. In fact many studies have shown that it is with precision balance testing and often under dual tasking
conditions where postural control is found to be deficient in dyslexics and ADHD children.’
There’s not so much wrong with making up your own ‘ultra-precise’ tests, psychologists usually have to give tasks which are more difficult than you would do in real life to find out how far your mind can go. But beware of tests with no real-world implications. It is a bit like a cosmetics company promising ‘microscopically smooth skin’ - unless you usually look at people’s skin with a microscope, it may make no difference.

p20: ‘Some argue that verbal working memory is deficient due to poor underlying phonological skills. However we are aware of few studies which suggest that phonological training enhances working memory skills.’
There’s a fair bit out there on working memory in dyslexia. 5-second search of Web of Science for ‘phonolog* AND working AND memory AND dyslexi*’ kicks up 154 hits, including stuff like:

Savage R, Lavers N, Pillay V., Working memory and reading
difficulties: What we know and what we don’t know about the
relationship
EDUCATIONAL PSYCHOLOGY REVIEW 19 (2): 185-221 JUN 2007

Smith-Spark JH, Fisk JE., Working memory functioning in developmental
dyslexia MEMORY 15 (1): 34-56 JAN 2007

Conti-Ramsden G, Durkin K., Phonological short-term memory, language
and literacy: developmental relationships in early adolescence in
young people with SLI JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY 48
(2): 147-156 FEB 2007

Brambati SM, Termine C, Ruffino M, et al. Neuropsychological deficits
and neural dysfunction in familial dyslexia BRAIN RESEARCH 1113:
174-185 OCT 3 2006

McCallum RS, Bell SM, Wood MS, et al. What is the role of working
memory in reading relative to the big three processing variables
(orthography, phonology, and rapid naming)? JOURNAL OF
PSYCHOEDUCATIONAL ASSESSMENT 24 (3): 243-259 SEP 2006

Savage RS, Frederickson N
Beyond phonology: What else is needed to describe the problems of
below-average readers and spellers?
JOURNAL OF LEARNING DISABILITIES 39 (5): 399-413 SEP-OCT 2006

Berninger VW, Abbott RD, Thomson J, et al.
Modeling phonological core deficits within a working memory
architecture in children and adults with developmental dyslexia
SCIENTIFIC STUDIES OF READING 10 (2): 165-198 2006

Thomson JM, Richardson U, Goswami U
Phonological similarity neighborhoods and children’s short-term
memory: Typical development and dyslexia
MEMORY & COGNITION 33 (7): 1210-1219 OCT 2005

Savage R, Frederickson N, Goodwin R, et al.
Evaluating current deficit theories of poor reading: Role of
phonological processing, naming speed, balance automaticity, rapid
verbal perception and working memory
PERCEPTUAL AND MOTOR SKILLS 101 (2): 345-361 OCT 2005

bored now, but there’s more…
My current textbook is book ‘Alloway, T. P. & Gathercole, S. E.
(2006). Working memory in neurodevelopmental conditions. Psychology Press.’, which would not be a bad place to start should someone want an intro to what’s out there. *More* research would be nice (want to fund my PhD?) but there’s already a fair bit.
Phonological training may or may not enhance working memory skills (actually, that’s very close to my lecture topic next week - maybe I should go & do a bit of the reading to check), but there is a lot of research on working memory in dyslexia.

p27: ‘This is a very large study of consecutively completing clients from Dore centres who are essentially receiving no ’special attention’ (as is the case with many controlled studies) but are experiencing the typical Dore product.’
This be Stoopid. Of course DORE is ’special attention’, & it is hardly beyond the realms of possibility that more effort is being put into reading & writing skills too when people are doing DORE. There is something called the ‘Hawthorne Effect’, where the act of measuring something & paying extra attention to it in itself causes a change (it’s a bit like psychology’s version of the Heisenberg Uncertainty Principle). A psychologist called Hawthorne was studying the effects of factory lighting on productivity. When he turned the lights up, people worked more. When he turned the lights down, people worked more. When he took all his clothes off & did the can-can, people worked more (ok, I made that last one up). But whatever he changed, people worked more. Being measured & having changes going on changed the behaviour that Hawthorne was trying to measure. It mucked his study up, but he did get a cool effect named after him - fair swap I think.
What do the authors mean by ‘controlled study’? There *is no* control group for comparison, everyone is getting DORE.

p27: ‘which later transfer solidly to responses to literacy support and practice.’
Haven’t actually shown this in any ecologically valid way. They’ve shown that for a particular subgroup (lowest %) there’s some improvement on some tests, not that this translates into stuff like
doing better in class.

‘As Dore involves no specific literacy or cognitive based training of any sort then the improvements are theorised as being directly linked to the observed neurological improvements in cerebellar function.’
They haven’t controlled for attention, maturation, placebo, Hawthorne, cohort effects, even proper diagnosis, and a whole bunch of stuff. I’d expect a good GCSE student to have a better understanding of the need for a ‘fair test’.

p27: ‘However they differ in as much as we have been able to reduce the watering down effect of those subjects with initial normal or superior performances in some tests.’
Why were you treating people who performed above average in your tests?

The whole conclusion is semi-detached from the report’s actual
findings, & reads as a sales pitch.

p28: ‘The previously published research studies’
You mean the ones that caused 5 Dyslexia editors to resign, have been subject of multiple rebuttals, etc etc? Oh, *those* studies.
Riiight…

p28: ‘anecdotally from Dore clients over much longer time spans.’
Why can’t they FOLLOW UP. It’s a bit trickier, but not actually impossible!

p28: ‘One of the original criticisms of the published research studies was that not every child who participated was diagnosed as dyslexic. In this study we know that at least 60% of subjects were diagnosed with dyslexia prior to attending Dore. It was also found that the dyslexic group showed initial literacy test performances which were slightly weaker than the non-diagnosed group. However the outcomes in both groups were equivalent after Dore. This tends to dismiss initial criticisms and additionally suggests that an initial diagnosis of dyslexia is not essential to benefit from the Dore program.’
60% diagnosed is not adequate to draw conclusions. Still, two in five children who DORE has cost lots of time, money, commitment, practice, parental attention, opportunity to learn useful things or do what normal children do, have NOT been diagnosed with dyslexia. DORE is not a miracle cure. Even its supporters agree that it is hard work & expensive. To put two in five children through that when their difficulties weren’t significant enough for a formal diagnosis is IMO unethical. This paragraph scares me. Is *everyone* going to be able to benefit from DORE? Is the plan to make *every* parent feel guilty for not paying lots of money to DORE & making their child throw beanbags around, even if they don’t have a diagnosis?

p28: ‘What is exciting about these findings is that Dore appears, by stimulating and improving cerebellar function, to impact on core cognitive skills associated with dyslexia. Correcting these learning related skills rather than focussing on training literacy skills directly leads to transfer to literacy acquisition without any
specific intensive training in literacy.’
They have NOT demonstrated this. There has been no demonstration of a ‘transfer to literacy acquisition’, just some proxy endpoints (~surrogate measures) which may or may not have anything to do with a child’s ability to read & learn in a classroom. Is it included specially to be quotable? This is a conclusion detached from the paper’s actual findings.

p28: ‘The sad part is that rather than embrace this intervention the reading industry led by the phonological theorists have chosen to severely criticise and ridicule it through manipulation of information and hiding behind authoritative academic positioning.’
FIGHT! FIGHT! FIGHT!
My lecturer may or may not be ‘aggressive’, but I’m afraid I rather like challenging people’s assertions with data or methodology. There’s nothing wrong with criticising work that just isn’t adequate to show what it claims to show. That’s how science works.

I’d love DORE to be proved right, because if it worked it would make life easier for me & a lot of my family. Doing poor research isn’t a good way to prove that your treatment works, and by not doing a decent job on the research then they are wasting moneythat could be used for good research, they are making it harder to have good research accepted, and they are wasting time when good research could get an effective intervention to more people sooner.
What does the ‘reading industry’ mean? DORE costs a lot of money. Most of the stuff done by ‘the phonological theorists’ is provided through schools for free. Come & look round the department car park, those who don’t have bicycles aren’t exactly driving BMWs.
‘Academic positioning’? I can’t hide behind authorative academic positioning. I’m but a humble undergrad, the lowest of the low, not worthy so much as to clean out the cages of the lab rats. But even I know that to show an intervention is effective you need a comparison group.

Whether you think DORE works or not, this latest bit of research won’t shed much light on the matter. It should be a disappointment to everyone on any side of the argument. Doing things properly, with a control / comparison group, proper diagnosis, follow-up, and a real-world measure of how the children did in school, isn’t that difficult to do. One really good study is worth more than dozens which are so badly designed & run that they can’t show anything, however good the treatment is. Whether you are a ’supporter’ or a ’sceptic’, you should be angry about this waste in an area that urgently needs research.

Jan
14

I’ve gone over to WordPress, ‘cos it lets me do a lot more interesting things, particularly in terms of linky goodness, & isn’t designed mostly for keeping diaries on. Hope that doesn’t inconvenience people too much, I’ll cut & paste what I had on the old LJ site (http://brainduck.livejournal.com, old comments there too) so please update bookmarks accordingly.

I have a blog
It is probably a better idea than me rambling at you in person or on t’internet at less convenient times.

This is mostly for me to ramble about brain-geeky topics - mostly Specific Learning Difficulties, SpLDs (basically things beginning with dys-, like dyslexia & dyspraxia), and Autistic Spectrum Disorders, ASDs, & related topics.

There’s a lot of stuff said about them in the popular press that really is not supported by the evidence, & given that I’m learning how to read & interpret the evidence then I thought I’d try to share some of that.

I’m a final year Psychology undergrad, & I’m also looking for adults (14+), diagnosed with dyslexia, dyspraxia, etc, to help with my final year project. More on that after Christmas when I get ethical clearance, but if you live in NE England, London, South Wales, or anywhere on a train line between them, and can spare an hour to help my degree & Science, please bung me an email or a comment - thanks!

The usual stuff - don’t take psychological advice from people you don’t know on LJ, go and see your GP, school learning support people, or a BPS-registered Clinical or Educational Psychologist.’