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:
- May 2013 Does dyslexia exist? and Magic glasses and the Meares-Irlen syndrome
- October 2013 Are all difficulties desirable?
- February 2014 The dyslexia debate – is the label ‘meaningless’?
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:
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.