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