As a child in the 1960s, Dr. Carol Greider struggled in school. Reading and spelling did not come naturally to her. Even when she was moved into remedial classes, she routinely earned “D's” and “F's” in English and performed poorly on standardized tests.
She admits that her difficulties often made her feel stupid. But Carol Greider is decidedly not stupid.
Greider is dyslexic and endured a childhood marked by academic insecurity. Like so many bright minds, Greider learned differently, though quite well according to the evidence before us today. To wit, she has at least one more Nobel Prize than most people you know.
In 2009, the molecular biologist and professor at Johns Hopkins University won the international honor in the field of Medicine for discovering telomerase, an enzyme that plays a major part in aging and disease. The day she made her discovery, Christmas of 1984, she was so ecstatic that she went home, blasted Bruce Springsteen's “Born the the USA” and danced around her living room. Not only is Dr. Greider smart, but that's one molecular biologist I want to party with.
In spite of her dyslexia, Greider has succeeded marvelously. In fact, Greider might even argue that the condition played a direct role in her career path. She found that she learned better in a laboratory setting, that this type of problem-solving was more compatible with her intellectual style. Ironically, Greider was able to make this discovery in the absence of a diagnosis.
Obviously, Dr. Greider's experience isn't uniform. But then, very little about dyslexia is uniform. And this fact has driven a sometimes fierce and emotional public debate.
There are those who would argue that the diagnosis of dyslexia is at once highly subjective, short on scientific rigor, and applied with inaccurate frequency. There are others who would argue that standard definitions of dyslexia don't go far enough to encapsulate its inherent challenges and that countless young students must face their learning disability without the benefit of knowing what to call it. And there are yet others who have been rescued from lives of academic despair by their diagnoses and the resulting intervention.
So is a diagnosis of dyslexia a stigma that promotes low expectations? Is it an opportunity for positive intervention? Well, the wholly unsatisfying answer to both of these questions is, it depends. It depends on whether or not the diagnosis is an appropriate one, which scholars have come increasingly to suggest is not such a sure thing. It also depends on the nature of the intervention, which also may or may not be appropriate on a case by case basis.
And then there are cases like Greider's. In spite of her academic struggles, Greider clearly found a strategy that worked for her and consequently excelled in ways most of us can only dream of. And she did it without intervention. This begs the question, would a diagnosis have helped mitigate her struggles or would it have disrupted the strategies that ultimately led her to a miraculous and award-winning medical discovery?
We simply don't know, and that uncertainty drives the debate presently before us. Dyslexia may be commonplace but our understanding of it is far from complete.
Dyslexia has, for decades, held the appearance of a widespread and well-understood learning disability. But some scholars argue that dyslexia is not as widespread as the numbers would have us believe. And as the current public debate over the subject demonstrates, neither is dyslexia as well-understood as the frequency of its diagnosis might imply.
Over time, its definition has been parsed, divided and deconstructed. Today, the International Dyslexia Association's (IDA) definition is generally the most recognized. The IDA says dyslexia is distinguished by “difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction.”
Seems simple enough. Dyslexia presents in learners who have difficulty decoding the written word while otherwise learning and comprehending as well as any other student. On the surface, dyslexia doesn't seem like that controversial an issue. From the outside looking in, it's a term you've heard so frequently that there is a tendency to simply accept its legitimacy. To be certain, dyslexia is real. And the public discourse on the subject has been complicated by those who might claim otherwise. This does not, however, mean that every diagnosis is entirely accurate.
This is where the controversy comes into play. What are the implications for those who have been improperly diagnosed? And how does the public debate over the subject threaten or enhance opportunity for those yet to be diagnosed?
According to the Journal of the International Neuropsychological Society (JINS), dyslexia is present in 6-17% of students. This troublingly unspecific range is based upon the varying diagnostic criteria used in any number of educational contexts. All of this is further obfuscated by the fact that there are is no single and readily apparent neurological or neuroanatomical cause for dyslexia. Though any number of studies have posited loose associations between dyslexia and certain neurological features, none has produced a compellingly empirical revelation. Diagnosis remains a modestly-informed crapshoot at best.
What makes this gamble especially troubling is the fact that dyslexia, according to the JINS, “can be prevented in many children with early intervention.” While the condition varies in its severity and is likely inherited, the Journal goes on to note that environmental factors will play a significant part in how the individual evolves and how the individual afflicted ultimately learns how to learn, for lack of better phrasing.
The knowledge that environmental factors can mitigate or exacerbate the symptoms of dyslexia is either proof that it is highly treatable or, as some would argue, evidence that dyslexia is a myth propagated by a narrow-minded educational establishment.
Late author and educator Samuel L. Blumenfeld would argue the latter of these points, going so far as to suggest that a diagnosis of dyslexia is a self-fulfilling prophecy that harms more than it helps.
He explains that so much of what educators understand (or neglect to understand) about dyslexia can be traced to a particular learning methodology innovated in 1936. It was in this year, said Blumenfeld, that professor E.W. Dolch created a list of the roughly 90 words that he regarded as those used most frequently in the English language. The premise of this learning instrument was that children who successfully sight-memorized these words would have a leg-up in learning to read.
As Blumenfeld explains, this strategy of literacy training predicted one's reading potential based entirely upon one's “holistic reflex.” For some learners, this was a fine measure. For others, it simply felt unnatural to sight-memorize words and translate them into specific sounds. The result, said Blumenfeld, was the increased tendency to diagnose those who learned differently as learning disabled. In a sense, Blumenfeld would suggest, the idea of dyslexia was essentially reverse-engineered based on a preferred strategy of literacy instruction.
Indeed, in spite of the not-entirely-accurate cliche that dyslexic learners perceive things backwards, one could readily argue that learning to read words without first learning to sound out letters and syllables is itself backwards. As Blumenfeld explains, dyslexic learners tend to learn through “phonetic reflex”—by sounding words out—as opposed to holistically.
Blumenfeld even went so far as to characterize a diagnosis of dyslexia (and its resultant educational pigeonholing) as “academic child abuse.” Blumenfeld's assertion is inflammatory to be sure but that doesn't mean it isn't worth examining with some objectivity.
Blumenfeld recognized that the symptoms that lead to a dyslexia diagnosis implicate altered brain patterns but he also pointed out that these altered brain patterns may be reinforced by incompatible learning strategies. The manner in which schools approach dyslexia intervention, said Blumenfeld, all but assures the persistence of these altered patterns.
Schools, in his opinion, produce environmental factors that threaten the progress of allegedly dyslexic learners. And insofar as schools often struggle to produce meaningfully individualized interventions, he may have a point.
As a text entitled Defending and Parenting Children Who Learn Differently notes, a child with dyslexia “must have a customized remediation program developed specifically for his or her individual set of symptoms.”
This is at odds with reality in most school settings. To the point, while dyslexia is classified by the Individual with Disabilities Education Act as a “specific learning disability,” it is not among the 14 distinct learning conditions listed on “the Individual Education Program (IEP) form that must be completed for every special education student.”
While dyslexia is lumped in with other disabilities in the federal Guidelines for Identifying Children with Learning Disabilities, it is not specifically addressed in its own section. This leaves states, districts and, of course, educators, with little to go on other than the catch-all reading interventions designed for students with learning disabilities of highly variant nature and severity.
This underscores Blumenfeld's point, not so much that that dyslexia is a myth, but that every child with a learning challenge learns differently. As a result, warns Blumenfeld, a dyslexia diagnosis inherently lends itself to formulaic intervention, of trying to force a square peg into a round hole, as it were. In his view, it also suggests the presence of a disability in a context where neurodiversity might be a more accurate and less stigmatizing explanation of learning difference.
A Cloudy Diagnosis
While Blumenfeld's hostility toward dyslexia may be alarming to those who have seen ample evidence of its very real and very impactful existence, his skepticism is not without basis.
Proof of dyslexia's nebulous diagnostic outlook can be found in the constant flux surrounding its definition and criteria. A 2001 essay on “The Evolution of Research on Dyslexia” notes that it is probably most accurate to consider dyslexia a syndrome as opposed to “a qualitative disease.”
This is because such a wide range of symptoms may or may not indicate its presence. This, in and of itself, hints at the complexity and nuance which are required (but often lacking) in our clinical and educational approach to dyslexia.
The first recorded usage of the term traces to 1872, when German physician R. Berlin applied it to a patient who—as a consequence of a brain lesion—had lost the ability to read. The next several years saw a flurry of references to a condition wherein a patient demonstrated impaired reading abilities but no other apparent neurological or cognitive impediments. It was during this time that the phrase “word blindness” also became a commonplace descriptor.
Over the next 150 years, this definition proved as mutable and varied as the human brain itself, with discussion on dyslexia's nature, origins, and symptoms only growing more complex in the duration. In addition to the mutability of its definition over time, dyslexia remains even today subject to problematic variation. A text by Elliott and Grigorenko entitled The Dyslexia Debate reports that the wide array of symptoms associated with and potentially indicative of dyslexia include “difficulties in phonological awareness, poor short-term (or, working) verbal memory, poor ordering and sequencing, weak spelling, clumsiness, a poor sense of rhythm, difficulty with rapid information processing, poor concentration in consent hand preference, impaired verbal fluency, poor phonic skills, frequent letter reversals, poor capacity for mental calculation, difficulties with speech and language, low self-image, and anxiety when being asked to read aloud. Critics of such lists note that none of the symptoms is necessary or sufficient for a diagnosis.”
As Elliott and Grigorenko argue, the variance and inconsistency of diagnostic features are simply too great to trust every diagnosis at face value. And if Blumenfeld is to be believed, we are using these less-than-trustworthy diagnoses to predict, mold (and possibly impede) the learning potential of countless students.
Passions Run High
Elliott and Grigorenko's The Dyslexia Debate 2014 text was met with tremendous hostility, particularly from those in the dyslexia support community. Many perceived it as an attempt to undermine the very legitimate difficulties faced by those living with dyslexia..
This reaction is not difficult to understand. A diagnosis can be a tremendous relief for those in the search of answers. Any doubt cast on such a diagnosis can reaffirm a sense of educational despair. But that doesn't always make it the right diagnosis. Elliott and Grigorenko challenge the idea that such a diagnosis is inherently beneficial to all who demonstrate symptomatic reading difficulties.
The authors warn that “All too easily a situation could emerge where either biological (dyslexic) or environmental (non dyslexic) explanations are ascribed to an individual on the grounds of their social circumstances. The reality is that, contrary to the picture that is often promoted by clinicians, it is impossible to distinguish between neurological and environmental etiologies when considering the needs of individual children who have scored poorly on reading-related measures.”
This not only makes the issue of diagnosis murky, but it opens the door for refutation of a more extreme variety. In 2009, such extreme refutation came from no less visible a source than a member of British Parliament, Graham Stringer, who argued that “the education establishment, rather than admit that their eclectic and incomplete methods for instruction are at fault, have invented a brain disorder called dyslexia.”
French psychologist Jacques Fijalkow offered a similar rejection on principle, indicating his refusal to “medicali[ze] a pedagogical problem which initially is a social problem.”
Unfortunately, such rhetoric only serves to create rancor in the place of reconciliation. For those who have dyslexia, who know that they have dyslexia, and who have been aided by properly targeted intervention, language like this is explicitly threatening.
While Blumenfeld argues that wrongheaded intervention is akin to academic child abuse and Elliott has called dyslexia “a construct which had gained currency for emotional reasons,” there are as many success stories yielded by positive intervention that might not have been possible without a proper diagnosis.
According to a representative of the British Dyslexia Association, conclusions such as those drawn by Blumenfeld or Elliot & Grigorenko are "at best unhelpful and at worst harmful.” Such claims harbor skepticism over a condition that is already difficult to fully define.
The Yale Center for Dyslexia & Creativity (YCDC) argues that dyslexia is a civil rights issue, that many young learners remain undiagnosed, and that both diagnosis and treatment of dyslexia remain elusive in public schools. The YCDC argues that this issue is more commonplace in urban settings and that, as a result, minority populations often see the least positive intervention. The YCDC contends that “children who cannot read are marginalized and left to struggle and ultimately risk falling completely through the cracks, dropping out of school and facing dismal futures. With proper identification and intervention, this is preventable.”
There is, however, some evidence that such intervention does not always yield positive results. According to a study from Child Research Centre & Department of Psychology at the University of Jyväskylä, Finland, only 20% of children who encounter reading difficulties in early life go on to become fully fluent adult readers. This lends strong credence to the argument that intervention could both be more widespread and more effective.
The book by Elliott and Grigorenko created a serious ripple in the public discourse over dyslexia. It prompted a flurry of headlines which posed the question, “is dyslexia a myth?"
It is with good reason, then, that reactions within the dyslexia support community ranged from offended to infuriated. It isn't simply that many perceived this as an attack on the validity of their condition. This concern is compounded by the sense, for some, that there lives would have been considerably different without a diagnosis, and not for the better.
In reality, the interventions now at our disposal are considerable and have helped many learners conquer their struggles. Educators have come a long way since Dolch's word list came to be. Today, the variety of interventions used to confront dyslexia are myriad. Most sources note that more time spent strengthening and training core reading processes will yield better results. This points the way to an array of strategies that center on phonetic learning, on integrated spelling and handwriting, on more direct interaction between student and instructor, on multi sensory approaches that combine visual, auditory, and kinesthetic processes, etc. etc. etc.
Point is, there is no one right way to address dyslexia.
But in a lot of ways, that is largely the point that dyslexia's critics are trying to make. The sheer variety of opportunities for intervention says that there is not one uniform way to confront dyslexia. It also says that there is yet much more we can learn.
Innovations in the treatment of cognitive impairment are making things possible that only just a few years ago would have been unimaginable. Take the work of Michael Merzenich and Paula Tallal for instance. The neuroscientists never questioned the existence of dyslexia nor the implications of its diagnosis. Instead, they conjectured that its effects could be mitigated.
Merzenich has dedicated his career to exploring neuroplasticity, the idea that the brain is an ever-changing, living, and growing thing capable of incredible repair, resiliency, and transformation. When he teamed with Tallal at Rutgers University, they applied this idea to the challenges that dyslexic learners face when attempting to connect words and sounds.
Merzenich and Tallal were among the first to flip the concept of dyslexia on its ear, literally. Remember, dyslexia was originally called “word blindness,” the assumption being that learners were struggling to translate the visual experience of reading to the pronunciation of words. In fact, in the latter part of the 19th century, it was a condition exclusively studied by ophthalmologists. Merzenich and Tallal felt that the research community was overlooking the important role played by auditory comprehension in literacy. They were right.
Consequently, they created a language-training software called FastForWord. To date, the online “brain-fitness program” has reportedly helped more than 2 million children “overcome” their learning disabilities.
Their accomplishments highlight an important point. Debate entirely aside, there is tremendous value in continuing to question what we think we know and to challenge assumptions, especially when it concerns the capacity of the human brain for miraculous things. it also demonstrates that parties on both sides of any perceived debate are ultimately in pursuit of the same thing. With or without diagnosis, both sides recognize that we must never stop innovating more optimal ways of pursuing intervention.
Those who question the frequency or meaning of a dyslexia diagnosis and those who have benefitted from its meaning do share common ground where it counts. In particular, most come from the basic belief that those with dyslexia can be taught to become successful learners and readers.
The authors of the Dyslexia Debate would ultimately argue that it doesn't matter what you call it. The breadth of dyslexia's incarnations suggests that the diagnosis, at least by name, can only tell you so much.
For those who have been rescued by a diagnosis, given hope by putting a name to the experience, or shown a path to intervention by gaining what insight there is to be had—for learners who fall into these categories—Blumenfeld and Elliott & Grigorenko are way off base. And in casting doubt on the existence of a condition that is most assuredly real, perhaps they are. But there is value in their argument.
With or without a diagnosis, the challenges of learning with dyslexia exist across a wide spectrum, not unlike autism in its diversity. With or without diagnosis, the best way to approach these learning challenges is on an individual basis.
Dr. Carol Greider's Nobel Prize suggests that what matters most is finding a learning style that works best for each student and cultivating it to its fullest potential. She is not alone. dyslexia.com lists an array of extraordinarily successful individuals in countless field who have achieved greatness while living with “the gift of dyslexia.”
Included among them are singer and activist Harry Belafonte, nature photographer Ansel Adams, and inventor Alexander Graham Bell. One thing that these success stories have in common is that all were written well before we had collectively streamlined educational intervention for dyslexia. As with Dr. Greider, such individuals offer inspiration to those labeled as dyslexic. But their enormous and fully realized potential begs the question, are we doing everything in our power to ensure the same success for struggling readers today? Are we creating individualized paths of learning for those who most need it or are we simply saddling them with the stigma of a vaguely definable “learning disability.”
While critics like Elliott & Grigorenko or Blumenfeld take their speculations to extremes—even to the extent that their claims are more alienating than illuminating to those who really must contend with dyslexia—there is also hope in what they argue. Namely, they offer the idea that every individual with dyslexia—diagnosed or not—is unique, deserves a chance to learn accordingly, and has the potential to achieve remarkable things.
In spite of the uncertainty and disagreement that shroud this discussion, we can all concur that no child should ever be made to feel stupid. Ultimately, whether one sides with those who question the value of a diagnosis or with those who consider it necessary, the outlook should be the same. Every student has a right to the education that best suits his or her needs. This—more than diagnosis—is the work of schools and teachers.
As reassuring as a diagnosis may be, the uncertainty surrounding dyslexia perfectly exemplifies the peril in demanding a name for something which may not fit cleanly into a given definition. And perhaps most importantly, it points to the need for education—special or otherwise—that teaches to the student rather than to the disability.
When learners with dyslexia are given the chance to learn according to their strengths—instead of being constantly reminded of their weaknesses—the results can challenge and even undermine the very notion of disability.