The World We Make

Defining Dyslexia With An Eye Toward Empowerment

A few rambling thoughts here. I have been knee deep in academic debates about the definition of dyslexia and wondering about all the contradictory information floating about. Leading dyslexia researchers disagree on the definition of dyslexia and the means for diagnosing it. And the neurodiversity discourse amongst the advocacy community is wildly different than the ‘just get them reading’ attitude of the RTI classroom. The philosopher in me needed a moment to stand back and try to see the proverbial forest…

It’s hard to understand dyslexia if we don’t know what it is. Sometimes, those of us who live in dyslexia world focus on explaining and educating others as if the definition of dyslexia is a settled thing. But ever since the word emerged, its meaning has been contested. There is no blood test, or singular genetic marker, or definitive brain scan that can positively identify dyslexia. The struggle is real and apparent, but the label has been slippery. It matters who makes the diagnosis, who gets diagnosed and what the diagnosis means. Yet all three of these diagnostic questions have been dynamic.  And that is not very helpful. This lack of clarity is especially vexing as almost all states have passed dyslexia specific legislation in the past decade. Schools are trying to educate teachers about dyslexia. Parents are trying to advocate for their children. Kids are trying to navigate an increasingly competitive academic environment. Meanwhile, academics are off writing articles and books debating not only the definition but the very existence of dyslexia.

As a former academic, this debate does not surprise me. It is the way peer-reviewed academic research works. But these academic debates often do not translate well into popular media. News articles proclaim that dyslexia might not really exist, or that schools are using a “disgraced” method to diagnose dyslexia. The controversy that makes eye-catching headlines and hones the research does little to help our dyslexic children navigate the literate world. How we label and identify dyslexia is not just a scientific question. The idea of dyslexia has power in the world. It can shame and limit our children or it can empower and support them. How we use the term dyslexia can transform the character of our world.

The simplified, non-expert history of this debate over the definition of dyslexia goes something like this. Clinicians, a century ago, identified dyslexia as an “unexpected” difficulty with reading, writing and spelling. Some children who seemed otherwise cognitively capable, even quite talented, struggled to learn to read. It was a mystery. The “unexpectedness” of this struggle led to an emphasis on cognitive testing to define dyslexia. If reading ability was significantly less than general cognitive ability (IQ), then a child was considered dyslexic.

However, as cognitive scientists began to understand the mechanisms of dyslexia, the phonological weaknesses and the different brain activations visible on fMRI scans, they realized these “weaknesses” and “differences” could be seen in struggling readers no matter where they fell on the IQ curve. The definition of dyslexia was missing average and lower IQ struggling readers (who could also learn to read if properly identified) because their struggle wasn’t “unexpected” enough.

“Out with the IQ tests” was the rallying cry!

So, the definition of dyslexia diverged, with some clinicians still utilizing cognitive testing but looking at a child’s overall pattern of strengths and weakness, while others preferred to eliminate widespread cognitive testing altogether and just focus on screening, instruction and intervention.

The RTI (response to intervention/instruction) crowd argued that you didn’t need cognitive tests to diagnose dyslexia. Give all kids good instruction. If they struggle, give them targeted, structured intervention. If they still struggle, and don’t meet benchmark expectations or fail to improve, they must be dyslexic. There are benefits to this approach. All kids who struggle should get high quality intervention, regardless of their cognitive profile. It doesn’t require time-consuming neuropsychological testing and staff trained to provide it. It seems pretty easy to understand: dyslexic kids are those kids who really, really have difficulty learning to read even after multiple tiers of intervention.

But this approach is not without problems. It relies on accurate screening in the early grades. It relies on high quality, skilled intervention. There is no consistent definition of what it means for a student to “respond” or “improve” sufficiently. And, the RTI approach also misses kids. Cognitively talented, high IQ kids often do respond to intervention. Even with mediocre instruction they can meet benchmarks for reading and look pretty average, though their reading ability is significantly lower than their general cognitive ability. In fact, some dyslexic kids are so good at compensating that they never fall below average, or they look average until they get to 4^th or 5^th grade and can no longer compensate.

With RTI, the pendulum has swung in the other direction and we are missing those very bright kids that IQ tests were so useful for identifying.

I had one of these kids. She seemed to be able to read 1^st and 2^nd grade texts. Her spelling looked like that of a 1^st grader. It wasn’t until she got to 4^th grade that I could see how slowly she had to read, how many words she struggled with, and how her handwriting and spelling still looked like that of a 1^st grader. She was different from my other two children, who struggled right from the start, who likely would have been moved to intervention pretty quickly. My middle child may never have been identified as dyslexic under an RTI framework, and she may be the most severely dyslexic of the bunch.

Defining dyslexia in the RTI framework also ends up defining dyslexia as primarily a reading problem. The goal is to get kids reading at a benchmark level. The kids at the bottom are dyslexic. As one proponent has said, the number of dyslexics in the population is a function of where you draw the line - the bottom 5%, or the bottom 10%, or the bottom 15% . It is just the “lower end of a normal distribution of reading skills.” If all kids meet benchmark, then nobody is dyslexic. This idea of dyslexia as just the lower end of the reading achievement curve is one reason so many dyslexic students are never identified. Cognitively talented dyslexic students, what some term “twice exceptional,” just end up looking average.

Some RTI proponents even claim that dyslexia can be prevented. The only way that claim makes sense is if you define dyslexia exclusively as a reading or decoding problem. It is fair to say that there are a lot of reading difficulties that solid tier one instruction would “prevent.” These kids wouldn’t struggle because what they need would be provided by the curriculum and their path to fluent reading would be steady and mostly smooth.

It is, however, unrealistic to think that the reading experience will be smooth for dyslexic students. I have taught three dyslexic kids to read. Even when I finally figured out how to do it, and got my hands on good curriculum, the process was slow and laborious. Focusing on RTI and defining dyslexia as an inadequate response to intervention pulls us away from thinking about dyslexia as a neurobiological difference. The brains of dyslexic kids are utilizing ancillary and inefficient neural circuits to read. They are, in essence, taking the long way around. They can be taught to read. If we start early enough it may even be possible to re-train their brains to build a more typical, efficient reading circuit. But, even when dyslexic kids can read, when they are reading at grade level, they are reading slowly and using more energy and effort than non-dyslexic kids.

Anyone who is dyslexic, or who has a dyslexic child can tell you dyslexia is more than just a struggle to read. Teaching a child to read is not a “fix” for dyslexia. These kids continue to need support and accommodations even after they learn to read. They work more slowly, struggle with handwriting and attention, struggle with math fluency and organization. It is not clear, under an RTI framework, what the justification for these continued supports would be. As long as kids can read in the average range, then they are not, or are no longer, dyslexic.

The pendulum needs to swing back just a little. The continued use of cognitive tests to better understand the strengths and weaknesses of dyslexics is vital to understanding what sorts of accommodations they need to reach their full potential.

More importantly, cognitive testing provides a picture of strengths that the dyslexic child can hold on to. In an RTI framework, the dyslexic child is nothing more than a struggling reader. They will be screened to find their weaknesses or deficits, and placed in intervention to fix them. To be dyslexic is, by definition, to be the one for whom intervention does not work. But learning to read is not the only goal here. We want to prevent reading failure but we also want to prevent children from seeing themselves as essentially broken. To be able to tell a child that their reading struggles are part of a beautiful, complicated neurobiological package is key to reframing dyslexia as a difference rather than a disability. Definitions matter.

Dyslexia is, as literally translated, a difficulty with words, but it is much more than that. It is the role of academic researchers to give us information about the variability of brain organization, and how the brain learns to read and evidence about which practices work to improve reading performance. What we make of that evidence is a question for philosophers and social theorists and advocates and policy-makers. It is a democratic question about what kind of world we want to live in and who we think should have access to that world. It is a complicated question. Is “dyslexia” the mountain we have to climb, or is it the rope that helps us up? Dyslexia can be narrowly defined as a “difficulty” with reading, or it can be broadly defined as a valuable neurobiological brain variant with a complex and fascinating pattern of cognitive strengths and weaknesses. When you are looking at your 6-year-old child and explaining why they are struggling, why they are working so hard and failing so early at the core task that will dominate their lives for the next 12 years, which of these choices seems best?