09/06/2024 | News release | Distributed by Public on 09/06/2024 07:25
Dyslexia is often discussed as a catch-all explanation for reading difficulties, affecting millions of children worldwide. Despite its common use, the term is surrounded by misconceptions and varied interpretations, making it a complex and sometimes controversial diagnosis. The question remains: what exactly does it mean to be dyslexic, and how does this label influence the way we approach reading difficulties?
Imagine this scenario - one that is unfolding not just across the United States, but in cities, towns and clinics around the world.
Sarah's parents had grown increasingly concerned about their daughter's reading. Now, at age 10, she was reading at an age level equivalent to that of a normal 6-year-old. Each year at school, there were few signs of visible progress, and the parents witnessed their daughter change from an outgoing, lively youngster who enjoyed school in the early years to one who became increasingly withdrawn, anxious and tearful. As her confidence as a reader eroded Sarah's willingness to attempt to read, or even share books with family members, declined. Parental attempts to help her were now met by protestation and avoidance. Consultations with school staff, who had long sought to help her improve her reading, had proven largely fruitless.
Wondering whether Sarah might have dyslexia, her parents paid for a private assessment from a neuropsychologist. After an extensive testing procedure, they were informed that she was dyslexic. Sarah's parents were delighted by this confirmation. As they later explained to friends and family, "At last, we know what's the matter with Sarah. Now, she will be able to receive the right form of intervention, one that is geared for dyslexic children. With this diagnosis, she will be able to receive the additional resources and help that she needs. Finally, we can confirm to her that her reading difficulties are not her fault. We can impress upon her that she is dyslexic and assure her that she isn't stupid, and she isn't lazy."
Unfortunately, as our new book, "The Dyslexia Debate Revisited " (Elliott and Grigorenko, 2024) shows in detail, these beliefs are highly problematic.
Perhaps the greatest difficulty with the term is that it is understood by researchers, clinicians, teachers and the general public in a variety of different ways. Most researchers employ this term to describe those with a severe and persistent problem with reading and spelling that is not caused by a severe sensory or intellectual disability. Accordingly, dyslexic participants in genetic, neuroscientific, psychological and educational research are typically selected based on their low performance on standardized measures of reading and spelling.
For many practitioners and clinicians, a diagnostic assessment of dyslexia involves a differing understanding of the construct. In this scenario only some individuals with complex reading difficulty are dyslexic, and underlying cognitive tests are required. Some also consider that those with dyslexia can be identified based on their biological profile.
"The Dyslexia Debate Revisited," demonstrates that there are no scientifically valid criteria or assessments, whether involving genes, brain structure/function or cognitive processes, that can validly differentiate between a so-called dyslexic and a non-dyslexic poor decoder. While a long list of indicators of dyslexia can be found on the internet and in print, it is important to understand that these are merely common features of poor readers generally. When a struggling reader is assessed, it will be highly unlikely that some 'typical features of dyslexia' will not be observed. Unfortunately, many assessors simply ignore the science and continue to employ inappropriate measures for dyslexia diagnosis.
As our book demonstrates, there are no forms of intervention more appropriate for diagnosed dyslexic individuals than for others with similar levels of reading difficulty; the diagnosis offers nothing extra to guide intervention.
What is problematic here is not the accuracy of the belief but, rather, the injustices that typically arise when resources are targeted to those who have the means and wherewithal to obtain a dyslexia diagnosis. "The Dyslexia Debate Revisited" explains how clinical diagnosis can only be applied to a small number of children, and consequently, large numbers of struggling readers, often those more economically disadvantaged, are excluded from the diagnosis and the resources and services that may result.
The importance of the diagnosis for increasing a positive sense of self is frequently cited as a key reason for providing a dyslexia diagnosis. However, if a child is told that their reading difficulties are not the result of being lazy or stupid but, rather, a consequence of their dyslexia, and thus not their fault, what are the implications for struggling readers who are not so diagnosed? Essentially, this is a zero-sum scenario in which diagnosed dyslexics may benefit while other struggling readers will be subject to inappropriate and unhelpful attributions.
We need to communicate a powerful and consistent message to practitioners and the public alike that no child (or adult) with a reading disability or their families should be seen as culpable for their reading difficulty.
"The Dyslexia Debate Revisited" argues that while continuing to use the term dyslexia to describe a severe and persistent difficulty with reading, we should dispense with its use as a formal, clinically assessed diagnostic condition. Rather than waiting for years before assessing a small number of children, we should seek to identify and address the needs of all children with reading (and language) difficulties from as early an age as possible.
Effective intervention for such children largely involves sound literacy teaching, which is often structured, explicit, comprehensive and intense. Additional resources and support should be introduced to those who continue to fail to respond. By operating in this way, the inequitable and scientifically questionable process of diagnosing dyslexia as a condition separate from other types of severe reading difficulty can no longer be justified.
By Elena Grigorenko, adjunct professor, Department of Molecular and Human Genetics/Brendan Lee Lab at Baylor College of Medicine and professor of psychology and director of the GENES:IS (Genetic and Neurobehavioral Systems: Interdisciplinary Studies) Lab at the University of Houston