Tech + Health

04.01.14

Your Kid's Dyslexia Diagnosis Is B.S.

“Dyslexia” has become a catch-all term for everything from poor reading skills to complex speech disorders. It’s poorly understood and largely over-diagnosed. Is it time to retire the word “dyslexic”?

In many countries across the world there is a common script in cases where children are encountering difficulties with reading.

It runs something like this:

Concerned Parent (CP): I am really worried about Tommy’s lack of progress at school. He seems to be making no progress in his reading and is now losing interest.
Helpful Bystander (HB
): Have you ever thought that maybe he has dyslexia?
CP
: This had crossed my mind but I wasn’t sure about it.
HB:
Well, then, why not take him to a psychologist and get him checked out? Then you’ll know one way or the other.
CP:
OK I’ll do this. If he is dyslexic, at least we can get something done to help him.

The problem here is that this exchange is underpinned by some fundamental misunderstandings. Put simply, there is a mistaken belief that:

a)     clinicians are agreed about what is meant by the term, dyslexia, and routinely employ a clear and scientifically rigorous diagnostic procedure

and

b)    a diagnosis of dyslexia points to an approach to treatment that is different to that which would otherwise be provided

Unfortunately, both of these beliefs are wholly wrong.

The origins of the term dyslexia can be traced back to late nineteenth century Europe. During this time, physicians began to produce case studies of patients whose inability to read was puzzling. One British physician, for example, described the literacy problems of a child of fourteen, noting that his teacher had commented that he would have been the smartest student in school if the instruction were entirely oral.

As is so often in the case for many quasi-medical diagnoses, the numbers of people considered to have dyslexia have mushroomed. In 1917, James Hinshelwood, a Scottish ophthalmologist, remarked disparagingly that some people claimed that as many as one person in a thousand had such difficulties. Nowadays, the proportion deemed to have dyslexia is anything from 4% to 20% of the population. How can this huge increase be explained?

The answer to this question is tied up with the lack of agreement about how dyslexia should be understood. Some see the term as merely a synonym for poor reading (and, reflecting such understanding, it is poor readers who typically populate the widely reported genetic, cognitive, and brain studies of dyslexia). There is no consensus as to where the cut-off point should be for diagnosing dyslexia. Furthermore, such a definition of dyslexia would render our concerned parent’s decision to seek a diagnosis largely irrelevant, as it is easy to ascertain the level of a child’s reading skill.

For many people, however, dyslexia is not the same thing as reading difficulty but, rather, a complex condition that requires clinical judgement to diagnose. A fundamental problem here is that the criteria employed for this purpose are inconsistently selected, sometimes operate counter to scientific understanding, and typically draw upon lengthy lists of symptoms, none of which are necessary or sufficient for a diagnosis. Often these symptoms are found across a range of other developmental disabilities such as ADHD, autism, speech and language disorders, and dyspraxia. The result of this is that dyslexia is no longer used to refer to a very small proportion of people with severe and complex reading difficulties but instead has become a catch-all term of questionable clinical value.

The second major misunderstanding concerns intervention. When we visit a physician, we typically seek a diagnosis because this should indicate the most appropriate form of treatment. Our concerned parent would be making a massive mistake, however, if he or she thought that identifying dyslexia would offer any insight into how to help the child’s problem. The reality is that there is no treatment for dyslexia that is any different for any child experiencing reading difficulties. Many popular treatments for dyslexia (e.g. involving auditory training, colored lenses, or special sets of physical exercises) have not been supported by high quality research studies. The only approach with a scientific evidence base is that involving high quality, structured teaching in which phonics is a key component. Given this knowledge, appropriate forms of intervention should be provided to all children as soon as academic difficulties emerge. The nature and intensity of this input would subsequently be determined by the child’s progress. In this scenario, help would be swift as there would be no need for any delay while a case was built to justify a referral to a clinician (sometimes known as “wait to fail”).

So if dyslexia is poorly conceptualized, severely flawed in a problematic diagnosis that, anyway, has no value for informing intervention, why is it so powerful? Why has the recommendation in our book, The Dyslexia Debate, that the term be discontinued, been met with such high levels of indignation and outrage?

To understand this response, one has to recognise the frustration that results from difficulties of this kind, the many years of hurt and humiliation that make some children’s lives a misery. Every lesson is a struggle, with peers often teasing and tormenting the child, and some teachers showing little understanding or recognition that the child may still be smart. Rather than run the risk of being perceived as stupid or incapable the child often stops trying so that eventual failure is seen as a consequence of low effort rather than the more shameful low ability. This, in turn, can lead to charges of laziness and the suggestion that the child has brought it on herself by not trying hard enough.

A diagnosis of dyslexia provides some solace to such children and their families and helps to dispel the feared association between their academic difficulties and their intelligence. So often, post diagnosis, personal testaments run—“I had always thought that I was stupid but now I realize that I’m not.” The reality is that there is little relation between decoding skill and IQ, and one cannot infer anything about an individual’s intelligence on the basis of their ability to interpret print.

However, the anger directed towards me, often taking an ad hominem form, seemed to concern a view of dyslexia that I had never promoted. In truth, this was partly because of irresponsible media reporting (one British newspaper headline suggesting that I had stated that it was “just a middle class way to hide stupidity,” clearly took first prize in the author misrepresentation category) but even those who heard or read my words directly were often incensed. But their fury was seemingly fuelled by statements that I had never made, nor did I believe.

I came to a realization that their anger was a form of projection whereby past humiliations caused by the insensitivities of others were associated with my own position. In essence, the angry parent was responding to me as a representative of all those who threaten their cherished belief that the label would help to ensure the wellbeing of their child. To challenge the scientific status of the diagnosis is to place in jeopardy the continued availability of additional resources and special arrangements. The perceived opposition, of which I was a highly visible member, can be seen to share common perspectives, all of which are insensitive to the needs of those who suffer from dyslexia. Although the reality is very different, it is easier to discount considered, academic problematizing when key critiques are blended with other less tenable assertions.

Maintaining the dyslexia “industry” runs the risk of legitimizing an essentially reactive approach to meeting the needs of only some of our most deserving children. It is surely time to discontinue the use of this label and, instead, put into place sound educational systems that identify and remediate reading difficulties from the first years of schooling.

The Dyslexia Debate, authored by Julian Elliott and Elena Grigorenko, is published by Cambridge University Press (2014).