Who is dyslexic and why does it matter?

“Man prefers to believe what he prefers to be true.” Francis Bacon

I’ve been thinking about dyslexia for a while. Here are a few of the posts I’ve written over the past couple of years:

One thing I’ve learned is that if you’re in any way critical of the label ‘dyslexia’, you’re going to get some grief. This is a highly emotive area and many people feel very strongly that being diagnosed as dyslexic was a positive, life-changing experience. Who am I to ague with that?

And this is at the heat of Elliott & Grigorenko’s research into dyslexia. In this paper they ask, “To what extent should our attempts to derive scientifically valid diagnostic terms be tempered by the functional value that these have for individuals?”

There are no end of psychologists who accept that dyslexia doesn’t really mean anything, but that “maintaining the use of the label is necessary in order to highlight the severity and debilitating nature of developmental reading difficulty and gain public support.” On the face of it, that seems fair enough: if it helps people, where’s the harm?

There is no doubt that many children struggle to learn to read. While some commentators put this down to poor teaching or ‘dysteachia’ (more on this here,) most scientists seem to accept that some reading difficulties clearly have a biological basis. The problem lies in differentiating dyslexia from plain old vanilla reading difficulties. The most widely believed diagnosis is the so-called ‘discrepancy model’ which states that dyslexia sufferers have a mismatch between their reading ability and their IQ, whereas n0n-dyslexics are those whose reading difficulties are caused by their low intelligence. As I discuss here, there is absolutely no supporting evidence for such a theory and quite a bit of evidence that flatly contradicts it.

You can se why such a diagnostic method might be appealing to students and parents alike. If you’re dyslexic then by definition, you’re not thick. But, while this is no doubt comforting for those fortunate enough to get a diagnosis, the cost of maintaining the fiction of the discrepancy model is that everyone else is stupid. And unsurprisingly, it’s those who are most socially and economically disadvantaged who are least likely to be diagnosed.

This is just one of many means of conflicting methods of diagnosis:

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An alternative way of conceiving of dyslexia is to view it as a synonym for any kind of reading difficulty: we could say that everyone who struggles with reading automatically gets the label. As Elliott & Grigorenko say, “this, at a stroke, removes any need for a clinical diagnosis, with all the attendant beliefs and expectations that it will point to a particular form of targeted intervention.”

For many, such a simplistic solution just won’t wash. Dyslexia has come to mean far more than ‘mere’ reading difficulty and has come to be associated with a whole host of attendant emotional and social problems. While this leads to claims that dyslexics are statistically more likely to wind up in jail, others maintain that dyslexia is a gift conferring greater creativity to those with the condition. Alarming or attractive as these views may be, they’re based on correlation at best and often just anecdote. There’s certainly no evidence that suggests dyslexia is the cause of either creativity or criminality.

So, maybe only those whose reading difficulty is rooted in biology should bear the label of dyslexia? The problem with this is that while it’s generally agreed that some people’s struggle to learn to read might be heritable, “there are no established biomarkers, either genetic or brain-based, that can currently be used to make such a distinction.” It may be that in the future genetics or neuroscience provides a reliable means for diagnosis or intervention, but right now, it’s just not possible.

Not only can we not agree on a method of diagnosing sufferers of dyslexia, there isn’t even consensus on what causes the condition. Until recently most researchers believed it was a linguistic condition whereas today many are convinced it is rather a visual problem while others see it as phonological, or caused by a deficit in working memory. Others say it’s all of the above. The truth is, we’re just not sure. And because of this gap in our collective understanding, even if we could accurately diagnose the condition, there’s little we could meaningfully do with the information. Despite the belief  that “identification of weak or deficient cognitive processes underlying dyslexia will lead to appropriately tailored programmes of intervention,” there just isn’t a suite of interventions that work with everyone possessed of the label.

Better, perhaps, to do away with the term dyslexia altogether and refocus attention on, “the need for assessment for intervention rather than assessment for diagnosis.” If we stopped looking for labels and instead concentrated on finding the best ways to help those who struggle with reading, maybe we could do a lot more good for a lot more children. Way back in 1976, William Yule reached a similar conclusion:

The era of applying the label ‘dyslexic’ is rapidly drawing to a close. The label has served its function in drawing attention to children who have great difficulty in mastering the arts of reading, writing and spelling but its continued use invokes emotions which often prevent rational discussion and scientific investigation.

This is the reason, argue  that the meme of dyslexia endures despite the lack of scientific validation: “The fact that understandings of dyslexia are often impoverished, misleading and incorrect has had little bearing on the dyslexia meme’s capacity to survive.” Does it just survive because “it is seemingly easy to understand, remember and communicate to others”? Or is it also perpetuated by the vast commercial interest in diagnosing, assessing and treating dyslexia?

Whatever the reason, the label lacks meaning and provides little in the way of support for many of those who struggle to read. There will inevitably be those with vested interests in claiming the label is helpful for some, whatever it’s weaknesses scientifically and whatever the harm it may cause for others.

Elliott & Grigorenko conclude their paper by calling “for the wider use of approaches to reading problems that are scientifically and professionally sound.” Good luck with that.

12 Responses to Who is dyslexic and why does it matter?

  1. debbiehepp says:

    Well summarised, David, and now added to this thread on the ‘dyslexia label debate’: http://www.iferi.org/iferi_forum/viewtopic.php?f=2&t=453

  2. Tom Burkard says:

    There is little evidence that any existing forms of assessment can prove useful in designing a bespoke instructional programme. Although individuals who struggle learning to read can vary widely in terms of intelligence, visual processing, auditory discrimination, working memory and any number factors that could affect learning, teachers are best advised to focus on the skills that must be learnt rather than the putative nature of the learning difficulty. Pupils will vary greatly in the speed with which they can master decoding (and encoding) skills, but otherwise differences within the pupil should not be a significant factor in programme design.

    Even if it were possible to improve outcomes with bespoke interventions, it is doubtful that the gains would justify the huge investment in training and staffing. For example, one of my colleagues–a TA in one of Norfolk’s worst comps– attended a course which specified interviewing pupils’ parents, compiling a vast range of evidence, and designing a package suited to the pupil’s putative ‘learning style’. She reckoned that she would have time to help 3 or 4 pupils each year. Yet at her school, half of their pupils were already three or more years behind in reading. The gap between theory and practice was surreal. They ended up using SRA Corrective Reading in SEN intervention groups which produced reasonable results.

    • PStone says:

      “Even if it were possible to improve outcomes with bespoke interventions, it is doubtful that the gains would justify the huge investment in training and staffing.”
      A RR teacher will get to 8 – 10 children a year. In a one form entry school this is very cost-effective.
      Proper RR is meant to reach the lowest achieving 20% of children in year 1. Once trained, they are trained. The costs do not continue year on year, but the teaching gets better.

      • Tom Burkard says:

        We’ve done a lot of research on RR, and it is vastly over-rated and appallingly expensive. The official literature put the cost at £2,400 per pupil, but we found that the true figure was £6,625 for each successful intervention (about one in five pupils were ‘referred on’ because RR didn’t work). Our review was published by Policy Exchange, and it led to the end of the grossly wasteful ECAR programme, which was primarily a vehicle for RR.

        • PStone says:

          Please provide a link to the research you mention. Also, please publish or give a link to your evidence that SP / SSP will be cheaper and more effective. I am genuinely interested.

          • Tom Burkard says:

            The paper is “Every Child a Reader: an example of how top-down education reforms make matters worse”, and it was published by Policy Exchange in February 2009. We found no independent research that backed the claims made by RR sponsors. We quoted Professor James Chapman at Massey University in New Zealand, who said it was useless for dyslexic children, and “Its claims about effectiveness just cannot be sustained”. I am sure you can find the Policy Exchange website if you are really interested.

            There are masses of evidence attesting to the effectiveness synthetic phonics. I have a letter from Jim Rose dated 13 March 1990 stating that “I am firm in advocating an eclectic methodology which includes the planned use of all the ‘schools of reading’ which I characterised in my last letter”.

            The evidence he subsequently encountered in conducting his 2006 review completely changed his mind, as I am sure you are well aware.

          • PStone says:

            Thanks for this comprehensive answer. I will look it up. As for “as I’m sure you are aware” I’m not. I often get accused of being deliberately obtuse about things I obviously must know. But I don’t.
            Re the “masses of evidence” about SP, again I get accused of knowing it all and refusing to believe it. I have searched high and low and not found it. I have seen in Sounds-Write website, claims that spelling is literacy, teaching spelling is teaching literacy, and that spelling tests are a better test of reading than reading itself. This I do find hard to comprehend?

            I have seen Rose’s 2009 supplement about dyslexia. Have you? He does not discredit RR at all.

            Thanks again for your full answer. When you say ‘we’ I also don’t know who that is? Are you a big noise?

          • Tom Burkard says:

            I would certainly be happy to send you an electronic copy of my DPhil paper, which was awarded for published works. The first paper I published was a review of the 6+ and 8+ results of the Suffolk Reading Test at Woods Loke Primary School in Lowestoft, which is where Sue Lloyd (the principal author of Jolly Phonics) taught. This test is administered to all pupils in Suffolk, which is not an LA noted for large numbers of pupils with social or economic disadvantage. Between 1990 and 1995, 14.8% of all Suffolk pupils had standard scores of <80 on this test at 8+, which is appreciably above what one would expect so long as the test had been accurately standardised. Yet at Woods Loke, only 1.8% of their pupils scored below 80–and these were all pupils that had transferred in after Reception, quite possibly because of Woods Loke's reputation as being a good school using intensive phonics.

            If you are looking for a much larger scale evaluation, the Abt Associates report of the Follow-through programme in the US provides very impressive evidence for the effectiveness of intensive direct instruction of phonics. In the UK, results from Clackmannanshire and West Dunbartonshire have demonstrated huge advantages for synthetic phonics. I considered the papers by Torgerson and by Dominic and Wyse that attacked the former research, and found it wanting in crucial respects.

            As for Jim Rose and RR–it was no secret at the time that the DfE was furious with Blair for forcing the issue on SP, and that it would cause him considerable embarrassment if the Government backtracked on its commitment to ECAR. When I talked to Jim Rose in 2006, it was not a subject he was willing to discuss, but he did make it very clear that his main concern was to disseminate training on SP, which he recognised would require a major effort. As the Head of one of the schools in the Clackmannanshire trials commented, "The scheme might have been contrary to my educational philosophy, but very quickly we were impressed by the results for the less able as well as the able. The children have developed remarkable listening and concentration skills, as well as confidence and self-esteem".

            As a final note, the hard core of SP involves only the initial stages of teaching decoding skills. I have long argued that a morphemic approach is more useful than a syllabic or phonetic approach to reading longer words and teaching children to read words with prefixes and suffixes. I also believe that at all stages, teaching children rules merely clutters their working memories, and that a modelling approach is far simpler and more effective. I am also totally opposed to top-down schemes–West Dunbartonshire is a classic example of a successful bottom-up approach. I have consistently argued for open trials to establish the most successful schemes, although I have recently concluded that RCTs are not the answer, as it is impossible to avoid the effects of teachers' bias.

            If you really would like to look at my work, my email is burkard@live.co.uk. I also recommend Sue Godsland's website.

  3. Hugo Kerr says:

    It is impossible, biologically speaking, for there to be a “gene for literacy” as beloved by the media. Literacy has been around for too short a time, and there has been no real selection pressure prior to, say, the time of the battle of Waterloo. No gene, no deficit in it.
    There is a higher degree of weak literacy among prisoners, but what did we expect? no biological explanation required.
    The cuddly ideas about extra creativity, lateral thinking etc are just cuddly ideas. No evidence.
    The list of potential symptoms is typical; subsuming most human traits. And encompassing huge areas of psychology about which we are still very deeply ignorant. All these lists produced by the field do this. Extraordinarily sloppy science.
    ‘Dyslexia’ is a negative label; learned helplessness trails inevitably in its wake. It can have some positive affective effects, and, indeed, material ones, but it’s negative effects are very considerably heavier, I think. Heads drop at the mere mention of the diagnosis.
    And diagnosis is so casual. Diagnosis is a big, grown-up word. It should be used only by people qualified so to do. Since we have yet to agree what ‘dyslexia’ is, what causes it and what is pathognomic of it, I suggest nobody really is.
    It would help so many people if we did not run for the oh-so-convenient, glib, absolving pseudo-medical terminology but made ourselves look better at what was probably really going on, or perhaps not going on. There are always much more likely explanations. Finding them would actually help. A superficial diagnosis does not.
    Affect has been at the bottom of most instances of ‘dyslexia’ I have dealt with, and optimistic, targeted and appropriate teaching was the cure.

  4. PStone says:

    No there is not a literacy gene yet, but perhaps it is bubbling away somewhere, similarly to the non-necessity of the appendix, and the disappearance of the little toe and the coccyx.
    I don’t really mind what people call those who can’t read, be it dyslexic or untaught – but I do prefer the latter. Little children who are not expected to be reading yet are just labelled not reading yet / untaught. In Scandinavia they are ‘normal’ 7 year olds. In UK they are likely to be diagnosed unwholesome at 5, and their teachers castigated.
    It doesn’t matter what the diagnosis is. What matters is what we are doing about it.
    I do believe that anyone who is not in a vegetative state can learn. I have said this before on your blog. I absolutely do not believe there are children too stupid to learn; destined not to be able to learn. I have taught many children who someone said wouldn’t. Arguing about why someone can’t read, and blaming whoever tried to teach them in the past; their methods; does children and adults no good at all. There was an ethos in SEN years ago that said, “He’ll never get there. Let’s just try and give him a happy life.” This notion is more than 25 years out of date. I don’t know where you are, Learning Spy, but if you are bumping up against that attitude in your school, I feel sorry for you and your children. But don’t assume those who don’t share your views on reading share the old fashioned views about non-readers. Most of us don’t. I know specially trained and qualified and highly-paid dyslexia teachers who do intensive phonics with children who start off 2 terms in arrears. 4 years later, the children are still doing intensive phonics and are 4 years and 2 terms in arrears.
    Let’s make sure everyone leaves year 2 a fluent reader.Let’s also look at the level of competence expected of year 2, which I can state categorically is not far removed from the level that got me into grammar school, many moons ago. Year 6 reminds me of my GCE O levels, except that it is harder.
    If someone looks at Xmas in year 1 as if they will not make it, let’s move heaven and earth and the Bank of England to get them there. If they turn up mid-phase, let’s give them everything they need. Everything. Like they would at Eton. Let’s not be in a position in which we know so-and-so needs such-and-such, but we can only afford to give them 10% of what we know they need, and then blame all and sundry teachers that they only have 10% of the learning / skill / attainment / achievement.
    Fundamentally, this SP / RR dichotomic?? (dichotomical??) feud is not pedagogic. It is political. Pedagogic is for the children. Political is not.

  5. PStone says:

    Plus:
    Out of 24,000 UK primary schools that score in the 90%s+ for reading, far far more are not SP / SSP schools than are. Those that are have all sorts of other exciting practices going on in tandem. Just like St George’s, Wandsworth.

  6. Polly D says:

    What is so frustrating is that there is no reading intervention which will work for all children who have reading difficulties/dyslexia. Some schemes will work for some and then you are left with a ‘hardcore’ who really suffer at school.

Constructive feedback is always appreciated

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