Thursday, 20 March 2014

My thoughts on the dyslexia debate


©CartoonStock.com

During February, there was widespread media coverage of a forthcoming book by Julian Elliott and Elena Grigorenko called The Dyslexia Debate. I've seen an advance copy of the book, whose central message is to argue that the construct of dyslexia lacks coherence. Quite simply, dyslexia does not constitute a natural category, in terms of cognitive profile, neurobiology or genetics.

The authors' arguments are backed by a large body of research: people have tried over many years to find something distinctive about dyslexia, without success. Some children are good at reading and others are not, but it's arbitrary where you place a cutoff to specify that a child has a problem. There's a popular belief that you can identify dyslexics in terms of a particular ability profile, and that affected children have a particular kind of brain organisation that makes them do things like reverse letters (b vs d) or have left-right confusion. In fact, those types of problem are common in typically-developing children at early stages of learning to read and appear to be as much a symptom as a cause of reading problems. Researchers have found neurobiological and genetic correlates of developmental reading problems, but the effects tend to be small and inconsistent from person to person: you could not currently diagnose dyslexia on the basis of brain scans or genetic analysis. It is, of course, possible that one day we may hit upon a new diagnostic test that does clearly differentiate a dyslexic subgroup from other poor readers, but many of us in the field are dubious as to whether this will ever happen.
 
The first thing to get clear is that Elliott and Grigorenko are not denying the reality of children's reading problems. Their point is a much more specific one about the way we conceptualise reading difficulties and how this affects access to services in everyday life. Their concern is that "dyslexia" implies we are dealing with a specific medical syndrome. Their view is that no such syndrome exists and it is not helpful to behave as if it does. How should we respond to this? I think we need to distinguish three questions:

1. Should we identify those in need of extra help?

Children vary in the ease with which they learn to read. Some need only the briefest exposure to books to crack the code; others struggle for years despite skilled help from expert teachers.
I think most people who have spent time with poor readers (and I would include Elliott and Grigorenko among these) would conclude that the answer to question #1 is yes. It doesn't matter whether those in the latter group have a distinct medical syndrome or not: It is up to us to ensure that all get the best teaching.

2. How should we identify those in need of extra help?

Elliott wrote a piece in the Times Higher Education where he argued that dyslexia diagnoses in Universities were skyrocketing, and that some people were unfairly exploiting the system in order to get accommodations such as a laptop computer and extra time in exams. To my mind, the problem here is less to do with the "dyslexia" label, and more to do with the haphazard way in which individuals are identified, and the lack of consistent criteria for determining who needs extra help. Like Elliott, I think it is entirely right that we should make accommodations for students who have serious difficulties in processing written information at speed. However, as he highlights, the current system is based on an unsustainable idea that "dyslexia" is a distinct disorder that can be reliably identified, and which is often diagnosed on the basis of supposed markers of dyslexia that have no scientific basis. So the current system is both invalid and unfair. Instead, it would be sensible to settle on consistent criteria for allocating extra help to students who are struggling, and to ensure that extra resources are directed to those who are most needy. As Castles and colleagues have noted, there are guidelines that can be used to identify those with severe and persistent problems, but they are not well-known or widely applied.

3. What terminology should we use to refer to those we identify?

So can we just agree that we need to find consistent ways of identifying poor readers and do away with the term "dyslexia"? While this might seem a logical response to the evidence, I think we should not underestimate the implications in practice. On the positive side, we'd get rid of the idea that we're dealing with a special condition that forms a distinct syndrome. Since few scientists would attempt to defend that notion, this would be a good thing. But we should also be aware of negative consequences.

Those commenting on the dyslexia debate so far have talked about it as if it is a particular issue relating to literacy difficulties, but in fact it's just one instance of a much more pervasive problem.  Other neurodevelopmental disorders such as autism spectrum disorder, specific language impairment, attention deficit hyperactivity disorder, developmental dyspraxia and dyscalculia are all beset by the same issues: there is no diagnostic biomarker, the condition is defined purely in terms of behaviour, different disorders overlap and there's no clear boundary between disorder and normality.
 
Similar issues have been much discussed in relation to adult psychiatric disorders, which are also diagnosed in terms of behavioural features rather than biological tests. In a fascinating paper, Kendell and Jablensky (2003) came to the conclusion that the categories of schizophrenia and depression are massively problematic in terms of validity and reliability – that is to say, just like dyslexia, they don't constitute natural categories clearly demarcated from other disorders, and furthermore, people can't even agree on who merits these diagnoses. So should we just stop using the labels? Kendell and Jablensky considered this possibility but concluded it would be impossible to abandon terms like schizophrenia and depression, on the grounds that they have utility. These labels have been used for many years by practitioners to determine the most effective intervention, and by researchers interested in discovering the underlying causes and likely outcome of a disorder. Similarly, using the construct of "dyslexia" we have discovered much about the nature of the cognitive deficits that characterise many poor readers, about underlying causes, about outcomes, and about effectiveness of intervention. For instance, we know that genes play a part in determining who is a poor reader, and that many children who have poor literacy skills also have subtle problems with oral language.
 
This argument, though, is not really watertight. We may congratulate ourselves on what we have learned, but on the other hand, it could be argued that there are also barriers to progress that arise from continued use of imprecise terms. It's clear to anyone who knows the research literature that findings can vary from study to study and from child to child within a study. This does not necessarily invalidate the research – it's rare to obtain perfect consistency of findings even within mainstream medicine – but it does make many people wonder whether we might obtain clearer results if we took a different approach. But then we have to consider what alternative approach would be better.

I suggested a few years ago that it might be helpful to treat neurodevelopmental disorders differently, as multidimensional composites, rather than regarding problems with reading, language, arithmetic, attention, motor skills and social behaviour as separate conditions. However, I did not really expect anyone to embrace this idea, as it would be too radical a change, and we are too wedded to current terminology.

Here too, comparisons with psychiatry are interesting. Last year, Tom Insel, director of the US National Institute of Mental Health, ruffled feathers by stating that his organisation would be reorienting its research away from traditional psychiatric diagnostic categories, to develop Research Domain Criteria, i.e. "new ways of classifying mental disorders based on dimensions of observable behavior and neurobiological measures." Yet the domains that are proposed seem to me just as arbitrary as the original diagnostic categories, and the associations between genetic, neurobiological and behavioural measures are mostly weak and poorly understood. So although Insel's vision might seem a rational way of trying to make sense of psychiatric disorders, it is years away from being clinically applicable – as he is the first to admit.  Even though multivariate, dimensional classification seems more logical, our current categories of autism, schizophrenia and dyslexia, though imperfect, may be as good as we can manage in terms of utility in day-to-day clinical practice.

Perhaps the strongest arguments in favour of retention of a term like "dyslexia" come not from science but from public perception. Like it or not, "dyslexia" has been around for over 100 years. In that time, a range of organisations have sprung up to help people with this diagnosis. Some of the most passionate defences of the dyslexia label come from those who have built up a sense of identity around this condition, and who feel they benefit from being part of a community that can offer information and support – see, for instance, this comment by the International Dyslexia Association to the suggestion that "dyslexia" be removed from the DSM5.

One could, of course, argue, that we shouldn't stick with a label just because it has always been there – if we were to adopt that line of argument, we'd still be talking about "maladjusted" and "educationally subnormal" children. But it's clear that many of those diagnosed with dyslexia do see this label as positive. In particular many people worry that if they were to simply switch to a more neutral, less medical term, such as "poor readers", this could trivialise reading problems, and lead people to assume that the difficulties are just caused by poor teaching. Furthermore, legal entitlement to special help under disability legislation could disappear. This, I think, is a key part of the problem, which can get overlooked when just focusing on the scientific evidence: what you call a condition determines two things: how seriously people take it, and where they place blame for the difficulties and responsibility for doing something about it.

To illustrate my point, see this recent piece in the Daily Mail by Peter Hitchens, which appeared under the headline: "Dyslexia is NOT a disease. It is an excuse for bad teachers". This displays a remarkably simplistic world view in which a poor reader either has a "disease", in which case they are blameless victims of an external force, or else it is someone's fault – in this case lacklustre teachers.

In his triumphalist piece against the "pseudoscience and quackery" of dyslexia, Peter Hitchens achieves exactly the opposite of what he intends. This is because he demonstrates one negative consequence of removing the label, which is that many people will no longer think that children who struggle to read need any kind of special help. Instead, we'll be told that "What they need, what we all need, is proper old-fashioned teaching."

A rather more sophisticated version of the same argument was given in the Green Paper that introduced the Government's proposed revision to legislation for Special Educational Needs (SEN) (see: my blogpost on this). There it was stated that too many children were being over-identified with SEN: “Previous measures of school performance created perverse incentives to over-identify children as having SEN. There is compelling evidence that these labels of SEN have perpetuated a culture of low expectations and have not led to the right support being put in place.” (point 22).

We really need to escape this polarised view of children's problems being caused either by a medical disease or by poor teaching. Yes, some children's reading may be held back because their teachers either don't know about or reject evidence-based methods of teaching, but it is seldom black and white, and some children fail despite intensive, high-quality teaching.

My concern is that those holding the purse-strings have a strong incentive to blame all problems on bad teaching or bad parenting, as it absolves them of any responsibility to do anything about them. We need to recognise that for most children, the causal influences are likely to be complex and may involve both constitutional factors and aspects of home and school environment. Unfortunately, most people don't seem able to deal with this complexity, and the language we use determines how problems are viewed. At present we are between a rock and a hard place. The rock is the term "dyslexia", which has inaccurate connotations of a distinct neurobiological syndrome. The hard place is a term like "poor readers" which leads people to think we are dealing with a trivial problem caused by bad teaching.

As Allen Frances argued in the case of psychiatry, we need to resist a growing tendency to use medical labels for what is essentially normal behaviour. However, he wisely notes that this should not blind us to the reality that there are people with problems that are severe, clearcut, and unlikely to go away on their own.  In the current debate, several commentators have made this point and have added that it doesn't really matter what we call them; the more important issue is to ensure affected individuals get appropriate help. But I'd suggest it does matter, because the label we use does much more than just identify a subset of people: it carries connotations of causation, blame and responsibility. While I can see all the disadvantages of the dyslexia label outlined by Elliott and Grigorenko, I think it will survive into the future because it provides many people with a positive view of their difficulties which also helps them get taken seriously. For that reason, I think we may find it easier to work with the label and try to ensure it is used in a consistent and meaningful way, rather than to argue for its abolition.

Reference
Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses American Journal of Psychiatry, 160 (1) DOI: 10.1176/appi.ajp.160.1.4


This article (Figshare version) can be cited as:
Bishop, Dorothy V M (2014): My thoughts on the dyslexia debate. figshare
http://dx.doi.org/10.6084/m9.figshare.1030404

 

26 comments:

  1. Well, you have the advantage of having read the book, which will not be available to the rest of us until after its publication date of April 30. However, your "thoughts on the debate" are persuasive--up to the last sentence. The term does unquestionably help many people cope with their difficulties, but it does so by providing them with a view that has all of the logical and scientific flaws which you say E&G outline and which you accept. Given the flaws in the construct, isn't it a fool's errand "to ensure it is used in a consistent and meaningful way?"

    It will be tragic if all the energy of the "debate" is expended on whether to retain or abolish the term. The "action on the ground" is in Reception and Yr 1 and 2 classes and focuses on what is labeled the "Phonics Screening Check." The Check is actually a measure of an individual's capability to handle the English Alphabetic Code, (akin to the Snellen Eye Chart used in driver licensing), independent of age. The simple measure has the potential for cutting through the communication fog of not only "dyslexia," but also the fog of much additional education and social scientific terminology.

    Screening Check "Data" have already been collected for three Reception Cohorts, but the results have as yet barely been analysed, and the pertinence of the natural experiment to the "Dyslexia Debate" has not yet been recognized.

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  2. Thanks for your comment, Dick. I am keen to hear different views on this as it is a complicated issue, but i was not entirely clear what you were saying.
    Do you think we don't need labels at all? Or do you have alternative ideas about an appropriate label? I realise you don't share my views on importance of terminology, but this question won't go away: currently the label you get will determine, for instance, whether you get access to specialist services, and indeed whether you are entitled to those services in law.
    Also, if you don't think dyslexia is a label we should use, would you also abandon autism, schizophrenia, depression, etc, which have the same problems? (Genuine question, not a wind-up!).

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  3. Nice piece Dorothy - pretty much accords with where I fall on this. On your point: "there is no diagnostic biomarker, the condition is defined purely in terms of behaviour", I think we should bear in mind that it's not all so beautifully clear cut in basic medicine either. We give the example of hypertension in our piece, which is likewise defined in terms of behaviour, broadly defined. And even when there are biomarkers, these are often defined in terms of levels of that marker in a blood test that are outside some specified normal range. So if we are going to get rid of labels in all cases where there are grey areas, I think that should logically be extended into medical conditions too.

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    1. Thanks Anne. A good point re mainstream medicine. This chapter on Classification has a really useful discussion of these issues as they apply to child psychiatry:
      Taylor, E., & Rutter, M. L. (2008). Classification. In M. Rutter, D. Bishop, D. Pine, S. Scott, J. Stevenson, E. Taylor & A. Thapar (Eds.), Rutter's Child and Adolescent Psychiatry (pp. 18-41). Oxford: Blackwell.

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  4. Thanks for the thoughtful and balanced exposition. I also have only read only the published summaries but it seems that we're unwittingly having multiple conversations at once.You mentioned Peter Hitchen's but there was also Rod Liddle in The Spectator (http://www.spectator.co.uk/columnists/rod-liddle/9157681/dyslexia-isnt-real-but-dont-worry-neither-is-adhd). But these are just the tip of the iceberg. There are many teachers and university lecturers who have no awareness of what it means to struggle with literacy, that it is divorced from IQ and that there are ways to help (from trivial to complex). These people see the 'dyslexia is not real' debate as a justification for the status quo not allowing any space for nuance. But at the same time, the term "dyslexia" is very useful when communicating with these people. So it is not just the parents and people who struggle with literacy who benefit. It's the whole system of support. On the flip side, the medicalised approach has the downside (as Elliott points out) by giving many the permission not to give enough support to those who are "not diagnosed" along the NICE model of approving medicines. So we need to have a conversation about this, too.

    But it's hard to do all at once. Convince the people who say, there's no problem at all, and at the same time finesse the way we use the term while we discuss the best policy for helping as many people as possible. And we have to all of this in the public eye being accountable to the myopic press, our constituency, scientific principles and our own consciences. No short order, this.

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  5. 'Multidimensional composites' seems to cover it well. The problem is, as you recognise, that people want simple answers and don't seem to have the patience for complexity.
    However, I will say that in all my years of teaching, I have very rarely met a child who has such a combination of difficulties that they can't be taught fairly easily. Very often I've had children who have been given 'severe dyslexia' diagnoses by educational psychologists who have no idea how to teach reading and spelling. Many of these have simply been badly taught and, after a short, focused period of tuition, are caught up (to chronological age or above).
    Occasionally though, there comes along a child with multiple (usually speech and language) difficulties and then that takes more time. I'm sure physical and emotional maturation also plays a part, as do so many other variables. Having said that, I don't believe for a minute that this number exceeds the figure of c. 2% Warnock put on it all those years ago.
    There are, I think, signs that the quality of the teaching of reading and spelling is slowly beginning to improve, though there is still far too much poor practice.
    Anyway, it takes a brave soul to enter this territory, or so I thought until I read your beautifully balanced posting.
    A couple of asides: I did smile at the cartoon. 'Snew' is of course a perfectly acceptable spelling of the dialect word many people would use in the north of England and in Scotland. As for b vs d, give me deevybee anytime!

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  6. The issue is indeed complicated, but in large part it's made so by the term, "dyslexia." Humanity has gone past similar labels like Phlogiston and Humours, which at the time provided "explanations," and we'll get past Dyslexia. It's only a question of the damage that will be unintentionally done in the meanwhile.

    The thing is, with appropriate instruction, the complications are resolved; the "Dyslexia" vanishes. Where does it go? Answer: It was never there. Only the belief in the term existed, and the belief was faulty.

    I fully share your views on the importance of terminology. Technical terminology in education is terribly weak. It's a current communication dilemma, because untangling “dyslexia/poor reading” involves delving into matters of the history and structure of the English language, early-child-development psychology, the psychology of learning, and the politics and sociology of pre-collegiate education. All of these matters are subsumed in current parlance in the term “Phonics” (or Systematic Synthetic Phonics, to get a bit more technical).

    The potential of the Alphabetic Code (Phonics) Screening Check is that it neatly cuts through the current communication fog, providing a technically sound instrument for forwarding the intent of “teaching all kids to read” now—without waiting on “further research.”

    The issue of psycho-diagnostic labels is also complicated. (What isn’t?) I’d categorize “Dyslexia,” in a class of labels that includes “Dyscalulia.” “Dysgraphia,” and “Dyspraxia,” which are often lumped together as “Learning Disabled.” As you note, the labels are important, since they are gates for “specialist services.” However, it’s bonkers when parents have to fight to get their kids stigmatized to receive services that more often than not do nothing more than lock in the stigma for life.

    I realize that the sound science and communication by you and your colleagues at DysTalk is evidence that very justifiable and beneficial effort can be conducted under these labels. I find that this initiative and a few others are exceptions rather than the rule, but again I’d submit that the natural experiment in progress (but not well-noticed), is the best route for sorting out the tis-taint views.

    Re the question of other psycho-diagnostic labels, such as “autism, schizophrenia, depression, etc.” I view these as different from “Dyslexia et al” for two reasons. One, neither the etiology nor the “treatment” is educational/instructional. Two, scientific research and technical development has made identifiable progress in clarifying and addressing the behavior involved in the “messy” label and shows promise of future advances. This R&D has its own history and trajectory for each construct. I don’t see that any of these characteristics holds for “Dyslexia et al.”

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    1. I'm more than willing to accept the evidence that appropriate phonics-based instruction benefits children's learning to read. Where we seem to disagree is on whether ALL cases of poor reading are down to poor teaching. Obviously if you can abolish poor readers by the right teaching, then we don't need a term to identify such children. But I'm sceptical about that, and here are some reasons why.

      1. There's a link between poor reading and problems with oral language. The oral language problems can be detected before the child starts school. Some of the relevant literature is reviewed here: Bishop, D. V. M., & Snowling, M. J. (2004). Developmental dyslexia and Specific Language Impairment: Same or different? Psychological Bulletin, 130, 858-886.
      Learning to read is a particular issue for children whose speech sound production is still shaky when first introduced to reading: Bird, J., et al. (1995). Phonological awareness and literacy development in children with expressive phonological impairments. Journal of Speech and Hearing Research, 38, 446-462.

      2. Twin studies indicate that there is a strong genetic contribution to reading ability – especially if you focus on those who get high quality schooling (and so the problems are less likely to be down to poor teaching). See for instance: Friend, A., et al (2008). Parental education moderates genetic influences on reading disability. Psychological Science, 19, 1124-1130.

      3. Studies of successful intervention typically find a small core of children who fail to benefit: Torgesen, J. K. (2000). Individual differences in response to early interventions in reading: The lingering problem of treatment resisters. Learning Disabilities Research and Practice, 15, 55-64. These appear to be children with more extensive language difficulties: Whiteley, H. E., et al. (2007). Young children at risk of literacy difficulties: factors predicting recovery from risk following phonologically based intervention. Journal of Research in Reading, 30(3), 249-269. doi: 10.1111/j.1467-9817.2007.00342.x

      4. There are children who master decoding but whose reading never becomes fully fluent. Wolf , M., et al (2002). The second deficit: An investigation of the independence of phonological and naming-speed deficits in developmental dyslexia. Reading and Writing, 15, 43-72. This is particularly apparent in languages with a transparent orthography. See for instance Thaler, V., et al(2004). Training reading fluency in dysfluent readers with high reading accuracy: Word specific effects but low transfer to untrained words. Annals of Dyslexia, 54, 89-114.

      To persuade me of your case, you'd need to show me evidence from the peer-reviewed literature that an intervention was 100% effective even in children with family history of language/literacy problems, and that it normalised reading fluency as well as accuracy.
      It would be great if such evidence exists but I'm pessimistic that it is a simple as you make out.

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    2. Granted your four points and the studies to support them.

      I’d counter them by focusing on the prerequisites a child must bring to the instructional table for Alphabetic Code-based instruction (which brings implications different than “phonics-based teaching, but that’s a whole nother story) to enable a child to read any text—with understanding/comprehension equal to that were the text read to them. As a rule of thumb, any child who can speak in full sentences and participate in everyday conversation is “good to go” with reading instruction.

      This prereq won’t be met by ALL children, and a “few” children who appear to be “ready” won’t be. But the “few” can be identified in the very first weeks of instruction (rather than waiting for years when the label Dyslexic can be legitimately applied). I could cite research in peer-reviewed journals to support these contentions, but it’s an empirical matter that can be addressed straightforwardly.

      The evidence yielded in the natural experiment in progress, with three replications of the Screening Check to date, indicate that some classes and schools are approximating ALL, while others are “not even close.” The variability in the results is not a function of either family socioeconomic status or “English language learning”—the two “determinants” commonly viewed as obstacles in reading learning/instruction.

      That tells us a lot. However, the only analysis of the data to date has been at the LEA and National (England) level. What is going on at the school and class level remains a “black box”—not because the data haven’t been collected; they just haven’t been analyzed as yet. Information collected in the first replication pilot study indicate that the variability derives from the way in which school authorities and teachers interpret “Systematic Synthetic Phonics” and in the degree to which they “enrich” it with “mixed methods.” But this finding was not followed up—although it has been confirmed by reports of “authorized trainers.”

      The “methodology” for exploiting the information in the natural experiment is simple and straightforward. Researchers commonly treat the matter as one of “implementation,” blaming participants (usually teachers, or whoever is at the lowest end of the chain) for lack of “fidelity.” That view leads nowhere other than futility. The evidence is that it’s not in the kids or teachers; it’s in the “apps” and protocols that teachers are using. That conclusion is consistent with evidence in all sectors other than pre-collegiate education, where it has yet to be recognized.

      I could well be totally wrong. All we have to do is “check it out.” Isn’t that the way of science?

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    3. Hello Dr. Bishop,

      Right on! I agree with all 4 of your points in your previous reply! I work at a private school for dyslexic children here in the United States. Our students range from second through ninth grades. As you have stated in previous posts, the term dyslexia may be overused, however, the label when accurately applied is an important one. Dyslexia is a heart breaking inability to read despite good pedagogy and good phonics instruction. Our students receive daily individualized Orton-Gillingham phonics instruction with explicit, systematic and multisensory instruction woven throughout their day and despite all efforts a cohort of our students continue to struggle to read (very slow effortful decoding). It is true that many of these students have or had accompanying language difficulties but their primary disability is in decoding (not spoken language, not comprehension but reading/decoding).

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  7. I am feeling somewhat inadequate as a non academic commenting on this however with 2, perhaps 3 of my 4 children currently receiving assistance for their apparent dyslexic tendencies it is an area that I have long witnessed them struggle with first hand, and it certainly is very real. They have a father, uncle and grandfather who all had a similar educational struggle.

    My issue is this. You all repeatedly refer to 'dyslexia' as an inability to read. This is not my experience of dyslexia at all. All my children read for pleasure, at age appropriate levels.

    The area of difficulty for my children (14, 17, 20yrs) and their father is not input but output. They cannot multi task, order their thoughts into a logical essay or even sentences within a paragraph. They can receive information but not retrieve or re-purpose it so easily. This can be verbal, or even as simple as remembering the correct and appropriate word for a specific situation.

    There are multiple ways of assisting with these 'symptoms' once they are recognised, but my goodness my children are intelligent, able, extremely willing to learn but deeply hindered by an education system that inhibits their ability to show what they can do within their areas of strength, and instead highlights what they are poor at within the defined norm.

    We are all individual and my approach is to get my kids through their education without them feeling as inadequate as their 'results' might reflect.

    My children have the knowledge on the inside but struggle to express it easily. As you have pointed out, dyslexia is not a one size fits all, but it is real. I have witnessed 3 generations struggle with it.

    My eldest is at university despite her battles, and for her, a C is like getting an A. Let's just hope she gets a job at the end of it. She's paying £50K for the privilege under the current system.

    All 4 of my children have or will experience 4 different GCSE examination formats. My one child who is not (yet) exhibiting any dyslexic tendencies is achieving at A /A* level across all subjects.

    Interestingly , Miss 17, who passed GCSE with solid A's/ B's has just flagged up in 6th form with a possible learning issue. Again, an output issue: mock exams. Based on her in class participation and homework she is sitting on A , but unexpectedly just got a U in the mock. So we now face yet another round of dyslexia assessment to see why she totally under performed in her favourite subjects, Law and English lit. As there is a family history, it's possible I guess, but I thought she was exempt.

    We are all different individually and the spectrum of the dyslexic-affected must therefore be equally vast. As a (past) secondary school teacher myself, I am in equal parts horrified that my children clearly suffer with some kind of learning handbrake, yet thrilled that they take it in their stride and work extremely hard to attempt to keep up and move forward with their educational development.

    I felt I needed to share because my personal lifelong passion has been to empower my students to excel and achieve excellence through good, solid teaching. To see my kids struggle with simple stuff over and over has made me realise it's not always as simple as just that! They struggle to express what their struggle is.

    You can theorise, and use educational justifications till you are blue in the face, but what can you actually do to help children like mine achieve success in today's education system?

    Please, apply your energy and knowledge so kids like mine don't get dismissed as un-teachable, disinterested, or not worth spending time on.

    Leandra, just a dyslexia-interested-parent.

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  8. "so kids like mine don't get dismissed as un-teachable, disinterested, or not worth spending time on."

    It would make this 'debate' a great deal more useful if people accepted that this is NOT what Prof. Elliot is saying!

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    1. Professor Bishop isn't saying this either (as I read her), bu it's a conclusion that Leandra and others derive from the research (particularly Point 2.

      Many parents would declare "mission accomplished" if their kids were reading for pleasure and age-appropriately (whatever that means) and would celebrate if the kids were coping with their schooling as well as L's kids are.

      The communication "struggles" described in her third paragraph can better be attributed to pervasive absence/ flaws in composition instruction rather than to any psycho-diagnostic label. (Do we need a label dyscomposia to call attention to the specific instructional deficiency?)

      On the other hand, kids DO too-often get "dismissed as un-teachable, disinterested, or not worth spending time on." I wouldn't hold the term "dyslexic" particularly a determinant of this unintended instructional neglect/abuse, but the unintended mal-instruction does stem from viewing all instructional flaws to be a function of biological/sociological/demographic variables which schooling can do nothing about. That is, anything-but instruction.

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    2. Odd spacing in last paragraph unintended, Dyskeyboardia perhaps?

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    3. Maggie D: Sorry if I was unclear in my final statement. The 'unteachable, disinterested' part is the battle we as parents have personally faced for several years with the attitude of the teachers at our local primary and secondary school. It certainly was not aimed at the author of the blog post.

      We have spent numerous meetings trying to overcome various teachers', head teachers and SEN assumptions that our son was lazy, disinterested or lacking in commitment; he was not. He would often come home and happily recall 'topic' based discussions, historical stories or other information he had learned in lessons. At home he has many interests that he can focus on for extended periods without difficulty.

      Upon obtaining an educational psych assessment the school was forced to acknowledge my son's strengths, and in particular for them, his weaknesses. They have since apologised for their failure to recognise his need for specific help in certain situations and strategies to cope, particularly as he moves through into the senior years.

      Disappointingly, we had to deliberately seek this 'label' for him through a formal avenue in order for him to access any help at all.

      I do not enjoy pointing out to teachers what they need to do to educate any child. As his ofsted-endorsed competent, full-time educators, they should be able to work that out.

      Dick is right, as my child is achieving within 'normal' range it's pretty much 'mission accomplished', but this attitude stems from his teachers not us. To me that is simply settling for mediocrity. As an intelligent boy, I think he is probably capable of much more, why shouldn't he be helped until he can achieve marks better than a 'C' ? Why stop there?

      My desire is that other parents should not have to face this kind of battle. Many are not as brave as I to challenge their child's educators so directly.

      Thanks to Dick, I shall now go and find out about 'dyscomposia'.

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    4. I wrote earlier, "it’s bonkers when parents have to fight to get their kids stigmatized to receive services that more often than not do nothing more than lock in the stigma for life."

      Leandra's report of her experience provides an N=1 experimental evidence to support the statement, and it takes only a thought experiment to replicate this finding. I don't know of any contrary evidence, but I may have missed something.

      I don't for a minute believe that teachers and HTs are uncaring, callous, uninterested, etc, and wouldn't want for a second to promote that belief.

      What they are up against when it comes to reading instruction is that some children learn to handle the Alphabetic Code and the other written language conventions without ANY apparent instruction. Others "cope hit-or-miss" with WHATEVER reading instruction a school/teachers provide and with the tasks that everyday life impose. Still others, don't do well either in or out of school and get psycho-diagnosically labeled. This yield the "normal distribution" that is observed any time the time the determinants of a phenomenon are multiple, complex, and not understand.

      Teachers and schools must cope with the full range of students. The conventional way to cope is to group students (to meet individual needs) and to use multiple methods (again, to acknowledge individual differences).

      They do this in different ways--even when they believe that they are complying with whatever mandates are coming from government, academic mandates that are current at the time--again giving us the "normal distribution" and hand-wringing about "fidelity" from the authorities.

      The "really neat" thing about the results to date of the Phonics Screening Check is that they depart from the conventional "normal distribution." Professor Bishop, in a previous blog has done the best analysis of the distribution, but the focus has been the blip around the cut score rather than on its (nearly) unprecedented shape. (Such a blip is to be expected any time a "cut score" is set.)

      What the distribution says (confirmed by the distribution of for Yr 2 kids the following year) is that the "long tail" of the distribution is still (or should be) a concern and the skew (pile-up at the top is not as steep as it should be.

      The issue Professor Bishop raises in the present blog (as I understand it) is whether the long tail can be attributed to instruction or to a syndrome termed Dyslexia that has legitimacy in its own right. I've submitted that this is an empirical question that can be easily tested at little cost by analysing data that have already been collected in an ongoing natural experiment. .

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  9. I really enjoyed this post (and the comments that have followed), as it fleshes out some of the nuances in the issue, though I do still disagree with the bottom line that dyslexia is a term worthy of continued use. In saying that, I recognise that my Australian context may be relevant, as “dyslexia” doesn’t have the same traction here that it does in the UK and possibly the USA too.

    However I think there’s an argument for “plain labelling” and there’s nothing inconsequential, to the individual, or to society as a whole, of reading problems. There’s no surer path to curtailed educational achievement and sense of self-worth at school than struggling to read.

    At an academic / research level, I think it’s critical that we continue to ask questions about identifiable subgroups of struggling readers, as this helps us to understand complex causal pathways. However I don’t believe that using a “less medical” term is necessarily a bad thing. When we talk of dementia for example, we refer to “memory problems” – all of us, whether health professionals, family members, or the media. We don’t need to revert to “amnesia”, or “amnestic syndrome” or similar in order for the problem’s bone fides to be established. The issue is the everyday functional disability / handicap (depending on your choice of terminology), notwithstanding the fact that on testing, some people’s difficulty will lie predominantly in encoding, while for others it may be retrieval, and that information is significant both empirically and clinically.

    So it seems to me we need to emphasise to our policy makers that reading problems are not benign or trivial – either for individuals or at a population level.

    One small (or maybe not) semantic issue with respect to the rock and a hard place dilemma is that I don’t think the alternative to “dyslexia” is “poor readers” – one is a condition and the other is a description of a subgroup of learners. For me the substitute term for dyslexia is reading disorder. That’s what’s visible, and needs to be both identified and responded to – diagnostically and educationally. Promoting evidence-based reading instruction should move everyone to the right, but of course there will always be subgroups of children who fail to thrive educationally in even model classrooms, and continued research is needed to better understand their language and literacy profiles.

    I just think it’s time to call a spade a spade and use plain, descriptive language. Yes, we will still need agreed cut-offs but at least there would be one less layer of qualification of meaning. At the moment, there is a Lewis Carroll quality to the term dyslexia, in the sense that it can mean pretty much whatever the user wants it to mean. The fact that terminology problems exist elsewhere shouldn’t make us any more inclined to tolerate this one.

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    1. We seem to have created a "spectrum" of terminology:

      Dyslexic-->Disability-->Impairment-->Disorder-->Deficit
      -->Poor/Problem Reader-->Struggling/Reluctant Reader-->Instructional Assets/Prerequisites

      The reason I opt for Instructional Prerequisites is that has no pejorative connotations and brings you right up to "What to do about it."

      As you note in your instructive blog of 28 Feb 2014.
      http://pamelasnow.blogspot.com/2014_02_01_archive.html

      The evidence-based interventions for children and adults with reading difficulties are the same, irrespective of what they are called
      That is the label tells you more about the person doing the "labeler" than it does about te "labelee."

      "Evidence-based interventions," though, are hard to find. Claims for such are a dime a dozen, but if we had them easily at hand, we could be talking about something else other than this issue.

      Again, we're up against sloppy terminology and fanciful instruction and measurement, but again, that's a whole nother story. At the risk of entering an infinite loop, I'd again make a pitch for the Alphabetic Code (Phonics) Screening Check as the way to cut through the fog.

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    2. Snap! I blame "the little man inside WordPress" for the formatting glitches and typos, but it could well be me.

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    3. Dick I agree that we are rather too spoiled for choice when it comes to the number of terms available, and of course there's even more views on where the boundaries (semantic and clinical) of such terms bleed into each other. I agree with Dorothy's view that we should be thinking more dimensionally than categorically on this issue. To clarify, by evidence-based interventions, I was referring to approaches that are informed by and stem from direct instruction in synthetic phonics - rather than whole-language derived approaches. Having pulled that particular pin out of the grenade, I'll retire from the discussion ;)

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  10. I have no argument with the medical diagnosis (or lack of), but the impact of removing the label is what we need to consider.

    I've a friend who was diagnosed as dyslexic in her mid-20s, and she has fully embraced that identity. It crops up in pretty much every conversation, and is used to explain pretty much any cognitive or processing difficulty that she has. Her school basically labelled her as stupid and lazy, meaning she got next to no qualifications – now that her workplace has had her assessed, she has things like coloured overlays and other gubbins that apparently makes a huge difference to her ability to read and understand. I do wonder how much of this is the placebo effect, but it has definitely had a positive impact on what she can do and on her attitude to learning. If only the school had diagnosed it when she was a teenager...

    So why did the school not? Why was the school not looking at a range of strategies to help students who were struggling? I don't know. For me, the danger of treating dyslexia as a discrete pseudo-scientific condition is that it encourages schools and other agencies to assume that all people with dyslexia have exactly the same profile, the same difficulties, the same needs, the same solutions. We know that isn't the case. Wouldn't it be better if we could educate schools to try a range of solutions in order to see what works best for each individual child? And I can't help thinking that labels like 'dyslexia' may be counter-productive to that focused approach. Or on the other hand, maybe it is useful to act as a reminder that kids who are having trouble reading and focusing may not be lazy or stupid but may have processing difficulties relating to shape and space (including letter forms) that *can* be mitigated.

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  11. I can only respond as the wife of a man diagnosed with dyslexia last year - having spent his whole life assuming he was (his words) 'just thick' - and as a mother of three, the youngest of whom was diagnosed with dyslexia last year in year 2. So, on this personal level, the benefits for them being given the 'dyslexic' label have been these:
    My husband, aged 6, was called a 'donkey' for not knowing how to spell or read at the appropriate level - this was in the late 1970s. By secondary, he was far behind his peers and told by his English teacher he would 'amount to nothing'. Little was known about reading difficulties then and the assumption was generally that if a child was a poor reader / poor speller they had a low intelligence. I'm happy to say, my husband kept those words from his teacher's with him and used them to prove them wrong. So moving on thirty years and he decided to get himself tested - terrified that he'd be told he really was 'just thick' - even though his determination got him into the police force. The diagnosis of 'dyslexia', though, has transformed how he sees himself. I cannot overstate this enough. It is not just a label that's given him permission to see his intelligence as it really is (well above average) but also it's given him access to apply for roles his (misspelt, repetitious) application forms would not have allowed him into.
    Our son is having a rather different experience of school (although his low reading age and poor spelling is much the same as his father's). The diagnosis, though, of 'dyslexia' has given him the same boost of confidence. Why? He's certainly not been called a 'donkey' by any teacher and has been given access to intensive phonics groups and as parents we've not treated him differently to our older two children, although it was evident at the end of pre-school that he wasn't as 'able' as his siblings in literacy. The reason for his boost, simply by being told 'you have dyslexia', is self-belief and that is as vital to a child's progress as any intervention. From the moment our children start school, they are expected to very rapidly be able to form letters and sound out simple words and for a bright child who cannot do these things - while others around them seem to find these tasks easy - only chip, chip, chips away at their confidence.
    Until early years teaching is less about tangible bench marks and more about play and exploration (as it is in most of Europe) the 'dyslexia' label is vital for self-esteem. I agree that it may be an umbrella term for different difficulties and is sometimes given to children who just need extra phonics help, but, from my family's experience, teachers are so much better at identifying children who need that help anyway, diagnosis or not, that from this perspective, the dyslexia label is irrelevant. The real benefit is given children permission to feel good about themselves, despite their perceived 'slowness'.
    I know with mental illness, the more the illnesses are sub-categorised (and not often to improve the treatment given) the less the public' understand or sympathise with the condition - which I think would be true with sub-categorising dyslexia. Especially when it's only within the last ten years or so that people recognise that children and adults who struggle in literacy are not all 'thick'.

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  12. Abandoning the term dyslexia in favor of a more general term like reading disorder or learning disability has serious consequences for selecting appropriate treatment methods. In fact, a similar general categorization scheme is typically used in public schools (and now by the DSM-5 for diagnostic coding ). The result tends to be the use of a "one-size-fits-all" treatment that is not very effective. (Just look at the data on the outcomes for children classified as "Learning Disabled" from the National Center for Education Statistics.)

    But mounting research on the The Simple View of Reading argues against the use of general labels. The Simple View is that a person with at least average listening comprehension but significant deficits in word-level processing (e.g., phonemic, phonetic, orthographic and morphological) be classified as dyslexic. In contrast, a cognitively inrtact person with significant deficits in listening comprehension would be classified as language-impaired (e.g., a specific language impairment). Naturally, as is the case with most terms in the behavioral sciences, it is not always perfectly black OR white. Still, the Simple View rubric works well as a basis for matching intervention(s) to an individual's deficits.

    This week I evaluated a high school student who had (according to previous testing) "dyslexic characteristics". Her cognitive scores and vocabulary were all in the average or high average range. I administered standardized assessments of phonological awareness and memory and rapid naming and word reading and spelling. All were in the average range. Then I tested her listening comprehension. Despite her good vocabulary skills she scored at the 5th %ile on these listening comprehension tests. She was not able to interpret the meaning of phrases like "pain at the pump", nor make inferences across sentences. This child is not at all dyslexic; rather, she has a specific language impairment. Although she is a bright girl with aspirations for higher education and has had years of "reading" interventon at school, she appears to have never had treatment for HER specific deficits. I would argue that this situation is directly due a diagnostic failure. It seems obvious that treatment must be addressed to the disorder and not some amorphous, undifferentiated "reading problem". With other children, the pattern is precisely reversed (good or even superior listning comprehension and significant word reading and spelling deficits associated with sub-word processing deficits), and their treatment would need to be specific to those deficits.

    I am scratching hy head, trying to imagine the motivation for replacing terms that have a specific meanings (as described above) with general, amorphous terminology.

    Sandie Barrie Blackley, MA/CCC
    Speech-Language Pathologist
    Co-founder, Lexercise
    http://www.lexercise.com/

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    1. Hmm. Elliott and Grigorenko (as I understand them) are not advocating replacing the term, dyslexia, with general, amorphous terminology. They advocate abolishing the term as well as the general amorphous terminology. They reach this conclusion on the basis of a scholarly analysis that forms the substance of their book. You may be scratching your head for the wrong reason?

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  13. Dyslexia is real and if you have it in your family it is obvious that it is genetic. It is also obvious that is is co-morbid with other learning issues like ADD and ADHD. From the research going on we should know in the near future what gene causes it.
    The "label" does help because it allows students to be assessed and then get the right kind of reading instruction. Dyslexics need phonics based reading instruction. This is not rocket science. There is ample data to show that phonics based instruction allows dyslexic students and other struggling readers to understand the code that is the English language. There is also evidence that good readers should also receive phonics based instruction because it improves there spelling. You should be looking to groups like the International Dyslexia Association and the Academy of Orton-Gillingham Practioners and Educators and professionals like Sally Shaywitz and Maryanne Wolf for their experience working with dyslexic students.

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    1. Re your comment about genetics, please note that there is a not a single gene that causes dyslexia. That is part of the problem with the category; if it were a single-gene disorder, then it would be much easier to diagnose. It runs in families but seems to be the result of multiple genetic and non-genetic risk factors acting in combination. Please see http://deevybee.blogspot.co.uk/2013/06/overhyped-genetic-findings-case-of.html
      In terms of intervention, as a researcher, I am interested in reading about any approach which is evidence-based. The evidence is good that phonics-based approaches do help, though there is little high quality published research specifically on Orton-Gillingham. But most practitioners recognise that there are children who don't respond well even to intensive phonics intervention (see Torgerson's work on treatment resisters), and Maryanne Wolf is among those who have pointed out that even if you teach a dyslexic child to read accurately using phonics, reading fluency often remains a problem. I'm not arguing against phonics - I think it helps get children reading - but it would be wrong to imply that it will solve all problems.

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