Dyslexia, we need to talk. It's not me, it's you.

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 It’s a strange thing, that you can have your doubts about a person or an idea, and sometimes these doubts just lurk in the back of your mind for a long time, surfacing unexpectedly during informal conversations, or in the question-time after a seminar or conference presentation. Then one day, an off-hand comment or innocent question brings a moment of crystalline clarity. So it was for me a couple of years ago when I had finished giving a one-hour presentation about early oral language competence and developmental trajectories to an audience of about 200 primary school teachers, and someone asked me a question about dyslexia. To my surprise (and I am sure to that of many in the audience, not to mention the organisers), I found myself answering “I’m sorry, I have no idea what dyslexia is”.

I immediately sensed the unease in the room of course, but went on to explain that it’s a term that (in Australia at least) has never acquired a robust, ring-fenced meaning accompanied by tight and transparent diagnostic criteria. Rather, it is a term that is applied, sometimes, by some professionals, to some children, who have various difficulties with reading, whether with decoding, comprehension, fluency, or a combination there-of. 

I was reminded of this experience recently, when I heard about a forthcoming text, by Professors Julian (Joe) Elliott of Durham University and Elena Grigorenko, of Yale University, Connecticut “The Dyslexia Debate”. I have pre-ordered a copy and am looking forward to understanding their arguments against the use of the term dyslexia, particularly given that Professor Elliot is in the UK, where the term has had a much stronger uptake than here in Australia. You can listen to some of Professor Elliot’s thoughts here.  

So, if we were to find three 8 year-olds in a Grade 2 classroom whose reading skills are say, 12 - 18 months below expected levels, would we say they all have dyslexia? If so, on what basis? What would we need to exclude in order for diagnostic criteria to be met? Can you have dyslexia if you have not been exposed to appropriate instructional techniques in the first three years of school? If not, what should we call your reading problems? “Reading problems”? Can you have dyslexia if you also have a mild intellectual disability? Or does a diagnosis of ID “trump” a diagnosis of dyslexia and automatically account for the child’s reading problems?

I went to school with a girl who had difficulties with writing, spelling and verbal expression that seemed, even to other students, to be disproportionate to her otherwise robust intellectual skills. I remember her explaining to us that she had dyslexia – “A thing between my eyes and my brain that makes it impossible to read words properly”.  At the time of course, I visualised a physical obstruction of some sort. Years later, when I enrolled in a four-year Speech Pathology degree, I expected that I would finally learn all about this thing between the eyes and the brain that impeded my friend’s academic progress.

But no. I did learn many Latin and Greek roots and affixes to describe a number of speech and language disturbances, but dyslexia rated barely a mention. Its close relative alexia was certainly covered in the context of (acquired) communication disorders of neurological origin, most notably certain left hemisphere lesions after stroke. Acquired alexia is often seen in people with aphasia and represents a breakdown in reading and writing a language with which the patient was familiar prior to their neurological event. 

 

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However my growing knowledge of a/dysphasia, alexia, a/dyspraxia, an/dysarthria etc was not augmented by a specific understanding of the term “dyslexia”. It seemed that I had come no further than my conversation with my school friend ten years earlier. Granted, it was a term I heard used by parents and in the media, but it was not part of my own professional lexicon. 

Let me stress though, that I had no doubt then (or now) that significant numbers of children, for a variety of reasons, have reading difficulties/disorders. Sometimes these children were described as having learning disabilities, learning difficulties, or learning disorders, or (more ideally I believe) as having language-learning disorders, reflecting the heavy reliance of reading skills on underlying oral language capacities.  Of course many of these children also have writing and spelling difficulties. These problems combine to wreak havoc in the lives of affected children, academically and psychologically and have significant implications at a wider population health level across the life-span. They are in no way to be taken lightly.

I became aware over the years though, that dyslexia is a term that is widely used in the UK, where it seems to have gained significant traction as a diagnostic label, both in childhood and across the lifespan. However this knowledge has done little to unpack my continued confusion about what dyslexia is, and what it isn’t. 

 

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Diagnostic labels have all sorts of pros and cons. 

On the up-side, they can help to explain otherwise baffling collections of symptoms and signs, thus providing parents with a form of psychoeducation that can be enormously beneficial in alleviating stress and anxiety. They can head–off mis-guided and punitive responses by parents and teachers and help a child’s educational needs to be better accommodated in the classroom setting.  In both children and adults, a label such as dyslexia, which has a rather medical ring to it, also helps to de-stigmatise sufferers – and let’s face it, there is considerable shame attached to being unable to read and write as an adult. Some adults go to excruciating lengths to conceal their difficulties from family, friends, and employers, and who can blame them? And of course, a label such as dyslexia can, in some jurisdictions, attract services, and what parent would not want to do that?

But there is a problem in applying a diagnostic label that sounds specific when in fact the difficulties it encompasses are often quite varied in their nature and severity and have many different causes. 

Unfortunately, we may have unwittingly created a two-tiered landscape in which one person’s reading disorder is validated as being due to a “medical problem” (dyslexia), where the next person just has a garden-variety “reading problem” – perhaps reflecting their (perceived) laziness or lack of intellectual aptitude. 

The evidence-based interventions for children and adults with reading difficulties are the same, irrespective of what they are called, so how is it helpful to apply a formal label to some, and not to others? 

Distancing reading problems from instructional techniques

Another major reason that I don’t like the term dyslexia is that it can unfortunately enable adults in the child’s world to abdicate responsibility for the child’s reading skills (or lack there-of). If appropriate instructional techniques (i.e. those based on synthetic phonics approaches employing direct instruction) are not employed in the early years and a child reaches Grade 3 not having achieved expected benchmarks, is that child now functionally “dyslexic”? The great risk here of course is that schools can give up on such children, as the child, rather than the instructional environment, is seen as the problem. 

In medicine, we refer to illnesses or other adverse outcomes that result from medical mishaps as iatrogenic – from the Greek “iatro” – physician and “genic” – stemming from. We should be careful, then, that we are not creating reading problems (dyslexia or not) that might best be referred to as “edugenic”.

So, dyslexia – who are you really? 

© Pamela Snow 2014

 

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