Award winning, best selling author of the Discworld novels, Terry Pratchett has been diagnosed with Alzheimer’s. In typical style, Terry has decided to use his fame to draw attention to the low levels of funding for research into Alzheimer’s. He has given £500,000 ( $1,000,000 ) to research and has been round the TV and radio stations raising awareness of this terrible but often hidden disease.
In response, the millions of Discworld fans are coming together for Match It For Pratchett. A campaign to match Terry’s £500,000 with £500,000 raised from fans around the world. In just four days, £35,000 has been collected.
If you are a fan of the Discworld or want to help fight a disease which, in Terry’s words, “which strips away your living self a bit at a time” then please donate. There is a donation jar on the web site plus full details of how to give directly to various national charities.
P.s. I’m also the web master for Match It For Pratchett so their may be less updates around here for a while.
All over the UK’s news today is a report into our primary school (age 4 – 7) education. One of the areas being discussed is what age children should start school. In the UK it is normally aged four and mandatory by age five. Some other countries don’t require it until aged seven.
School starting age may impact on educational problems such as dyslexia and ADHD if these are caused by a neurological underdevelopment. The early start to school may exaggerate the difference between those children who’s development is equal or greater than average and those who are below average. With the under-developed children immediately falling behind, their better developed peers and once behind they may never catch up. The argument for a later school starting age is that by seven there is a lot less variation in neurological development (at least relating to basic skills such speaking, listening and movement),
The report by the National Foundation for Education Research looked at a variety of research that should children in the UK who are summer born (April to August) do worse than those that are winter born. The obvious answer was that the summer born children got less schooling because they tend to started schooling later. However more detail research found that this wasn’t the issue. The report offers no easy answer why summer-born children do worse.
One interesting nugget the report throws out is that when our starting age was first set, part of the motivation was financial. The sooner the children entered school, the earlier the school leaving age would be, allowing the children to enter the workforce sooner. May be its time we embraced a schooling system more like that of our european neighbors and discard our system that dates back to the time we had children working up chimneys.
A report on the BBC yesterday suggested that about half of all parents with Learning Difficulties (LD) had their children taken in care by social services. This caught my attention for a couple of reasons. Firstly they did not identify the nature of the learning difficulties so presumably included people with dyslexia. Secondly if the figure is true then there needs to be a lot more support given to the parents or social services and the courts need to understand more about the capabilities of adults with learning problems.
After some digging I’ve found the original report. Find the Right Support [ PDF ] is well written and thoughtful 100 plus page examination of the needs of parents with learning difficulties. It is aimed at midwifes, social workers and related agencies and gives guidance on the the identification of parents with LD and the problems they may have dealing with social services. The report, like the BBC, makes no differentiation between the different types of disability bit it does make clear that intelligence, the ability to read and the ability to be a good parent are not directly connected.
The 50% figure quoted in all the news reports is used in the report but its source was actually a study done in 2005 for the NHS. Adults with Learning Difficulties in England 2003/2004 is a big study (over 9MB for the full version). Right at the beginning of the full report it says
“We have decided to use ‘learning difficulties’ rather than ‘learning disabilities’ because these are the words that the people themselves said they prefer. It was used throughout the research. In this report we talk about ‘people with learning difficulties’, meaning people who since they were a child had a real difficulty in learning many things. We do not mean people who just have a specific difficulty in learning, for example, people who only have difficulty with reading which is sometimes called dyslexia.“
Further on in the report they clarify things further
“…we asked people whether they themselves had ‘learning disabilities’ or whether someone they lived with or supported had ‘learning disabilities’. Because we just asked people, we realised that we might end up interviewing some people who did not have learning disabilities as such, but who may have other difficulties (e.g., dyslexia). We decided to exclude people if they had been awarded a GCSE at grade C or above, an O level, an A level, a degree or HND qualification.“
So the study was looking adults with severe problems or at least severely let down by the education system. Presumably this would capture large numbers of autistic people but not the majority of dyslexics.
Two and half thousand adults (16+) with learning difficulties or their carers were interviewed for the study. The results are, as you may expect, depressing.
Two thirds of people with LD who want to and are able to work are unemployed
Adults with LD are more likely to no contact with friends or family
Only one in three voted in the 2001 general election compared to 73% of non-LD adults
Half of all adults with LD are still living with their parents
On caring for children the report says:
“One in fifteen of the people we interviewed (7%) had children. Of the people who had children, just over half (52%) looked after their children. Women were slightly more likely to be a parent than men (9% compared to 6%). But men and women were just as likely to be looking after their children if they had any (52% of women, 53% of men).“
It is worth noting that the report doesn’t say who is looking after the children that are not with their parents. Nor is there any indication if the parents are unhappy with this arrangement.
On January 2, 2006 an explosion in Sago Mine left thirteen miners trapped. In the 41 hours before rescuers could reach them, twelve had died of carbon monoxide (CO) poisoning. The thirteenth, Randal McCloy Jr., was left comatose and in a critical condition. His chances of any sort of recovery where slim as CO prevents oxygen being carried to the brain, resulting in permanent damage.
Mr McCloy had other ideas and just four months after the accident, he has left hospital and is on the way to a full recovery. Doctors are amazed at this and point to a number of factors that have helped including the speed at which he received treatment once rescued, his age (26) and his high level of fitness. However two aspects of his treatment require special note.
He received Docosahexaenoic acid (DHA) an omega-3 essential fatty acid used a treatment to speed up recovery from brain damage but is also sold as a treatment for ADHD and dyslexia. He also received hyperbaric oxygen therapy (HBOT), a standard treatment for CO poisoning that has been promoted as an effective therapy for autism. Myomancy has covered this before (Hyperbaric Oxygen Therapy for Autism) where I wrote:
“There is no evidence it works with autistic childern and some proponents of HBOT promote a long list of conditions that HBOT can treat. I’ve found that a good rule of thumb is the longer the list of problems a treatment claims to help the less likely it actually helps. However it seems at least logical that increasing the supply of oxygen to the brain could stimulate neural growth and repair.”
No doubt promoters of omega-3 fish oils and HBOT will jump on Randal McCloy’s incredible recovery as support for the healing powers of their products but the simple fact is that Randal is a fit young man who received the best treatment possible from a large team of dedicated medical specialists. The only thing we should take from this story is that the brain can recover and grow if people are willing to make the effort.
In Confusion Over Autism Epidemic I touched on how figures from California are showing a drop in new autism cases. Ginger from Adventures in Autism has posted an analysis and graph of the data. The dicussion in the comments is also worth reading.
Drug companies are in a no-win situation when it comes to advertising. If they advertise or promote a product they are seen as ‘pushers’, shamelessly increasing societies’ dependancy on chemicals, stimulants and drugs. But if they don’t promote their product then patients who could benefit from a drug might not get it because their doctors are not aware of it. Its an ethical minefield that is very hard to traverse.
The Daily Telegraph is running a story ADHD advice secretly paid for by drugs companies about how two UK organisations for ADD / ADHD sufferers have received money from Janssen-Cilag, which makes Concerta, and other companies. The story is reasonably well balanced: “Andrea Bilbow, the founder and chief executive of [National Attention Deficit Disorder Information and Support Service] (ADDISS) … said: ‘From time to time we do go to the pharmaceutical companies to ask for money, but we are not getting massive amounts. We don’t sell our soul to the devil but we can’t survive without them.’ Ms Bilbow said that she did not identify the companies which have funded her charity on its internet site because to do so would be giving them ‘something in return’“.
There is a big difference between the UK and US approach to medicine and advertising. In the US, drug companies can advertise directly to consumers, which has been cited as a major factor in the growth of ADD / ADHD diagnosis. In the UK where advertising to the public isn’t allowed, the growth of ADHD diagnosis is a lot slower. However most of the money drug companies spend on marketing is aimed at doctors. After all, they are the only people who can actually prescribe the drugs. There have been numerous studies on the interaction between drug companies and doctors, e.g. Does drug promotion adversely influence doctors’ abilities to make the best decisions for patients? which found “the relationship between doctors and pharmaceutical companies is shown to be problematic in a way that might negatively impact on patient care.”
All is not lost. Some doctors are now rejecting all the freebies they get from drug companies. Groups such as No Free Lunch are encouraging doctors to give up their ‘addiction’ to the drug company’s dollar. You the patient can help. Next time you are seeing the doctor for your ADHD medication, see what logo they have on their coffee mug, ask them how many times a week they eat out on the drug companies’ expense. Let the doctor know you are concerned that they are being influenced and that the influence might be detrimental to your health.
Other peoples opinions on this subject: The Marketing Of ADHD: Public Service, Corporate Greed Or Business As Usua, How Drug Companies Spin Doctors
The Dyslexia Myth heavily promoted a system of teaching reading that was developed by Peter Hatcher and initially implemented in Cumbria, UK. Cumbrian County Council has details on the Reading Intervention program as it is implemented in their region. The approach taken by North Yorkshire Local Education Authority and featured in ‘The Dyslexia Myth’ was the School-based Intervention Programmes for Children with Speech & Language.
York University carried out a comparison between the Reading Intervention (RI) system developed by Peter Hatcher and Department of Education’s Early Literacy Support (ELS) approach. They found that both were successful in raising enabling six year olds struggling with reading to catch-up with their peers. There was some difference in between the two systems but these were marginal compared to their overall success.
Part of the Reading Intervention system called Sound Linkage can be purchased from Amazon.
Professor Maggie Snowling who featured strongly in ‘The Dyslexia Myth‘ has published a response to the program via York University’s Centre for Reading Language.
No one in the field of education would deny that there are myths surrounding dyslexia … But this does not mean that dyslexia is a myth … there is strong scientific evidence concerning the nature, causes and consequences of dyslexia. Thus, dyslexia can be readily identified by educated professionals …. [but] It is no longer relevant to ask ‘who is dyslexic and who is not’. Rather, the skills underlying the acquisition of reading are continuously distributed in the population, such that some people find learning to read and write a trivial matter whereas others, notably children with dyslexia, have extreme difficulty … a massive consensus that learning to read depends upon phonological (speech) processing skills. Children who come to the task of learning to read with poor phonology are at high risk of dyslexia. …. If they do not receive intervention, they try to compensate by relying on visual skills, their reading and spelling development proceeds on the wrong trajectory and subsequently goes awry. … it is important to note that phonological abilities do not depend on IQ … Our research suggests that some 75% of children identified at risk of reading problems in Year 1 respond positively to such programmes. The remaining 25% continue to give cause for concern, and will include those with dyslexia whose problems are likely to persist. … A crucial question therefore is whether, if appropriate procedures for the identification, assessment and intervention of children at risk of reading problems were put in place in all schools, dyslexia would go away? The answer is quite simply no. Dyslexia is a brain-based disorder with consequences that persist from the pre-school years through to adulthood. Good teaching delivered at the right time will not eradicate the condition but it will greatly help these children learn to read and write and cope with the demands of our educational system.
The Dyslexia Myth used a very narrow meaning of dyslexia, focusing on the inability to read. If you use Google to define dyslexia it gives you more than twenty different definitions, most of which mention a difficulty with reading. The British Dyslexia Association offers the best definition:
“Dyslexia is best described as a combination of abilities and difficulties that affect the learning process in one or more of reading, spelling and writing. Accompanying weaknesses may be identified in areas of speed of processing, short term memory, sequencing and organisation, auditory and/or visual perception, spoken language and motor skills. It is particularly related to mastering and using written language, which may include alphabetic, numeric and musical notation“.
The problem with these definitions is that have the wrong paradigm or assumptions. The emphasis of these definitions is on language, manifested by the ability to read, write and spell, and that this language skill is a little black box in the brain. The little black box works that does not work in dyslexics and therefore all the education system needs to do is fix it. This paradigm is the one that every academic featured in The Dyslexic Myth was using.
I’ve just watched the program ( The Dyslexia Myth, The Dyslexia Myth: Dear Editor ) and will post a full breakdown of it by lunch-time tomorrow (Friday).
First thoughts on it is that the central message of the program was right but it was presented in a very aggressive, negative way. There were some factual errors, e.g. there is good evidence supporting the use of coloured (colored) lens or overlays and just because the criticism of the Dore / DDAT research is valid it doesn’t mean the treatment doesn’t work, only that its not been proven. Some of the statements made in support of the program’s theories are weak. For example, they claimed that reading was a core skill, independent of other skills like balance, but why do we have this part of the brain? We, Homo Sapiens, have existed for 150,000 years but we only invented the written word 6,000 years ago. What was the reading part of our brains doing for the intervening 144,000 years? Isn’t it plausible that the reading parts of the brain are also involved in other tasks such as coordination skills?
A last thought, The Dyslexia Myth was right pointing out the scandal of our education system failing those children whom it can most help.
Update: Just spotted that the British Dyslexia Association has posted a response to The Dyslexia Myth.