Parents are often relieved when their child who has trouble reading is finally diagnosed with dyslexia. At last, the problem has a name and expert diagnosis to go along with it. A dyslexic child can receive specialized instruction and gain extra access to staff support and resources. And the diagnosis offers an instant response to those who assume the child is stupid or lazy.
For these parents, their child’s dyslexia diagnosis is similar to a diagnosis of a bad knee. You visit your doctor to have your troublesome limb checked out, wondering whether the cause of your discomfort is an infection, a ligament injury, arthritis, or possibly a tumor of some kind. The doctor runs a series of tests, diagnoses the problem, and then recommends a course of treatment that has been found by detailed research to be effective.
“The present system of dyslexia diagnosis is scientifically flawed.”
But things aren’t quite so simple. The reality is that, as helpful as some parents may find it, the present system of dyslexia diagnosis is scientifically flawed, wasteful of resources, and inequitable in its social effects. The prohibitive cost of testing and other barriers means that most struggling children will never gain access to the relevant resources. In order to reform the current system, we must first dispel the myth that underpins it.
Dyslexia is sometimes understood as synonymous with reading disability—a severe difficulty with reading and spelling that persists despite appropriate instruction—and sometimes as a condition only experienced by some struggling readers, identified on the basis of cognitive tests. Parents tend to prefer the latter definition, which is why they sometimes pay thousands of dollars for a detailed psychological assessment involving multiple tests.
Debates over these two understandings continue to rage. In an attempt to clarify the understanding of dyslexia, and in the light of scientific advances, the US-based International Dyslexia Association has recently defined the condition as “a specific learning disability characterized by difficulties in word reading and/or spelling that involve accuracy, speed, or both and vary depending on the orthography. These difficulties occur along a continuum of severity and persist even with instruction that is effective for the individual’s peers.”
If a child is to meet this definition, there is no need for a wide range of cognitive tests to be declared dyslexic. While cognitive testing might prove helpful in understanding a child’s educational needs, this is not the same as arguing that performance on cognitive measures can be employed to confirm or refute a dyslexia diagnosis.
The IDA definition rightly highlights contemporary scientific understanding that reading difficulty is a consequence of multiple risk factors. While it was once hoped that clear causes of dyslexia could be identified, researchers now promote a probabilistic conception whereby biological and environmental risk and resilience factors operate in combination to increase or decrease the possibility that any given individual will develop a reading difficulty. The combination of such factors is complex and unique to each individual.
Currently, we are a long way from being able to use this understanding for practical purposes. While we know that reading difficulty has a biological basis, despite rapid scientific advances, we are unable to use either genetic testing or brain scanning techniques, such as functional magnetic resonance imaging, to make a differential diagnosis of dyslexia for any given individual. And even if a link to dyslexia could one day be found, why would we need to look at genetic profiles or brain scans for diagnostic purposes if we already know that the client has a severe and persistent reading disability?
“When it comes to dyslexia diagnosis, this expectation is misplaced.”
The diagnosis received for a painful knee is welcomed because we anticipate that this will lead to an appropriate course of treatment. But when it comes to dyslexia diagnosis, this expectation is misplaced. While there is strong evidence that structured instruction, in which the teaching of phonics plays a significant role, is usually necessary, there exists no special intervention program for a diagnosed dyslexic individual that is not equally appropriate for any struggling reader. If you understand dyslexia not as synonymous with difficulty reading but as a condition only affecting some struggling readers, this finding may be both surprising and disconcerting.
The reality, however, is that attempts to tackle reading by improving underlying cognitive processes, such as working memory or speed of processing, have proven ineffective. Even where performance on such measures can be improved in artificial lab settings, these transfer poorly to the performance of such skills in the real world. Research indicates that any time employed to improve specific cognitive processes would be better spent directly addressing basic literacy skills. This is no recent insight. In a paper published more than two decades ago, Frank Vellutino, a leading authority on reading disability, together with several other eminent reading scientists, concluded that practitioners should “shift the focus of their clinical activities away from emphasis on psychometric assessment … in favor of assessment that would eventuate in educational and remedial activities tailored to the child’s individual needs.”
References to children with a puzzling inability to develop reading skills first appeared in medical literature in the closing years of the nineteenth century. In a now famous 1896 paper, a British physician, W. Pringle-Morgan, described a child of fourteen years of age who had failed to learn to read despite normal intelligence and good eyesight. Noting the boy’s other abilities, he observed that the “schoolmaster who has taught him for some years says that he would be the smartest lad in the school if the instruction were entirely oral.” At first, the problem was considered to be a rare form of word blindness experienced by as many as one in a thousand. In contrast, some contemporary researchers estimate the prevalence of dyslexia to be as high as one in five. Others suggest a lower figure closer to one in ten. However, as reading ability lies on a continuum, the exact point of any diagnostic cut-off is essentially an arbitrary decision.
A further recent development is the growing willingness of assessors, particularly in the case of adults, to diagnose the condition even when the client is not presenting with a significant reading or spelling difficulty. Such diagnoses are typically determined on the basis of the presence of those cognitive deficits that are commonly found in struggling readers.
The increasing rate of diagnosis is surely in part a response to incentives. In the United States, dyslexia is recognized as a Specific Learning Disability under the Individuals with Disabilities Education Act (IDEA), which enables individuals to access special resources, tailored educational interventions, and various legal accommodations. While not essential, the diagnosis also acts as a primary pathway for receipt of an Individual Education Program, a legally binding document for children with disabilities that ensures that they receive specialized instruction, support, and services. A dyslexia diagnosis can also be useful for adults to obtain accommodations, assistance, and additional resources at college or in the workplace.
Studies in the United States and Great Britain have shown that dyslexia diagnoses are disproportionately found in more affluent areas. Given the costs involved in undertaking an assessment, often thousands of dollars, it is unsurprising that children from socially and economically disadvantaged backgrounds are less likely to be diagnosed. There is also the issue of salience: A poor reader in a high-achieving school is more likely to stand out as needy than one with a similar reading profile who attends a school in a disadvantaged area.
In responding to critiques of dyslexia diagnosis, some researchers, education professionals, and diagnosticians have pointed out the power of the diagnosis for building and sustaining the child’s self-esteem. Some commentators have argued that even if the diagnosis is scientifically questionable, it helps children feel better about themselves.
The assumption behind this view is a longstanding belief that dyslexia was a condition specific to children whose reading skills were significantly poorer than their measured intelligence (IQ). It is obvious why this diagnosis would be attractive to struggling readers and their families. Nevertheless, the validity of what is known as the IQ-reading discrepancy approach has been widely discredited over the past three decades. As the IDA website states: “Individuals with dyslexia are neither more nor less intelligent than the general population.” Nevertheless, many assessors and diagnosticians, due to ignorance or vested interest, perpetuate this notion.
“Such assertions have no basis in the scientific literature.”
An equally misleading claim is that those with dyslexia have a range of special abilities or gifts (often involving creative or entrepreneurial skills). Such assertions have no basis in the scientific literature, but are fueled by anecdotal reports of the abilities of highly successful dyslexic people. Unfortunately, wishful thinking is such that many readily accept these claims. The problem is that championing the ostensible gifts of people diagnosed with dyslexia creates a second category of “stupid poor readers” who can be written off as beyond help.
Many children struggle to learn to read, and many do not receive the help they require. The present diagnostic system only helps a small proportion of struggling readers, often those who are more socially advantaged. Waiting for a diagnosis can delay the introduction of appropriate instruction. The later interventions start, the less likely it is that they will be effective.
An alternative would be a system where increasingly structured instructional help is contingent not on a diagnosis, but on a child’s response to the extra assistance he or she receives. For this to work it is necessary to ensure that early years’ classroom teachers are skilled in teaching reading and language and are able to identify any child who is failing to make sufficient progress. Such children should be provided with additional instruction, in class as well as in small groups, and their progress closely monitored. Those who continue to make insufficient progress would typically move up to the next tier where they would receive higher levels of small-group or individualized instruction and greater support from specialist professionals.
“Using this approach, a diagnosis of dyslexia would no longer be necessary.”
This procedure, sometimes known as Response to Instruction with Multi-Tier Systems of Support (RTI-MTSS), requires a detailed structure and skilled practitioners able to tailor their approach to the child’s needs. Unfortunately, this has not always proven to be the case. Failings of operational practice and teaching content have sometimes led to criticism. But the RTI-MTSS approach, conducted appropriately, is the best way to ensure that all children at risk of reading failure are identified and subsequently receive additional instruction tailored to their needs. Using this approach, a diagnosis of dyslexia would no longer be necessary—or might be used in a limited way when a child continues to struggle with reading, despite having received high-level assistance over many years. In that case, a diagnosis might indicate that future work should focus on the use of technological aids such as word reading devices or speech to text software.
Failure to learn to read has far reaching consequences. Research paints a depressing picture involving greater likelihood of poor educational outcomes, embarrassment and shame, negative perceptions about academic competence, increased likelihood of school refusal and suspension, and poorer mental health. In adulthood, literacy difficulties are associated with a greater risk of unemployment, lower income, homelessness, criminality, and poorer health. The social and economic costs of such outcomes are vast. It is essential that we jettison a system that identifies and elevates a small proportion of struggling readers while overlooking the needs of others. Superior systems that can address the needs of all readers exist but, first, we need to persuade those with a vested interest to maintain the status quo to accept the need to change.