Why students with dyslexia aren’t “at risk”

My mom had an in-home daycare when I was five years old. She read lots of books to me—I was surrounded by books—and every night my mom would read to me and my twin brother from a book of nursery rhymes and poems. “The Sugar-Plum Tree” by Eugene Field was our favorite. “Have you ever heard of the Sugar-Plum Tree? / ’Tis a marvel of great renown! / It blooms on the shore of the Lollypop sea / In the garden of Shut-Eye Town.”

I dreamed of that garden in Shut-Eye Town. And, like most kids, I dreamed of being able to read and write. Unfortunately, kindergarten came and went and, unlike my brother, I was not reading. Heck, I still had to work on my kindergarten letter books over the summer before first grade.

My story of learning to read is painful, just like the stories of other kids who struggled with reading, and it’s a hurt that I carried with me long after kindergarten. As I got older and studied to become a teacher, for example, quotes about the beauty of reading, the sanctuary of reading, and how intelligence is built on the number of books you read made my stomach turn. I didn’t need any reminders that, for me, reading and writing were always a chore. The insult that I wasn’t intelligent as a result was the cherry on top.

[D]yslexia can’t be avoided, and dyslexia doesn’t go away.

I am very fortunate. Because of the support of many teachers and my family, I’ve built a career on understanding learning disabilities. My studies and professional experience have allowed me to make peace with who I was—and am. I’d like to share some of what I’ve learned with you. If you have dyslexia, I hope it will bring you some comfort. If you are an educator, I hope it will guide you as you work with students of all ages who struggle to read.

Our changing understanding of dyslexia

In 2020, all but two states have passed legislation to screen K­–2 students for dyslexia. While that’s terrific news—and an important step forward—the fact that I still regularly need to dispel the outdated notion that students can somehow “get” dyslexia is frustrating. Students may show signs of dyslexia or they may have characteristics of it, but students are not “at risk” of getting or developing dyslexia. We often talk about kids who are “at risk,” as though they could catch dyslexia the way they might catch a cold after a friend sneezes nearby. This is not the case.

We’ve known dyslexia is a hereditary trait for more than a century. In fact, in 1905, the British physician C. J. Thomas, among others, presented this idea in his article “Congenital ‘word-blindness’ and its treatment.” He was followed by James Hinshelwood, who authored articles in British Medical Journal soon after. Numerous literature reviews noting these seminal works abound, including Bruce Pennington’s “Using genetics to understand dyslexia” from Annals of Dyslexia in 1989.

Dyslexia itself can be traced as far back as the 1600s, and our understanding of it has evolved since then. According to Peggy Anderson and Regine Meier-Hedde, the earliest known reading issue was recorded in 1676 when a Prussian physician described a patient who lost the ability to read due to a stroke. Over the next 200 years, the bulk of brain research was focused on aphasia, not on trouble with reading, and it wasn’t until 1877 that terms like “word blindness” were used by Adolph Kussmaul to refer to patients who could not read in spite of average intelligence.

Kussmaul’s research made reading problems a legitimate field of study and paved the way for Rudolf Berlin, an ophthalmologist, to make his contribution. In his work, Berlin observed difficulties some of his adult patients had with reading. Berlin found no problems with their vision and coined their condition “dyslexia,” a word derived from the Greek that means “difficulty with words.”

By clinging to the erroneous label ‘at risk,’ we can fall into the trap Dale DiLeo calls ‘benevolent ableism.’ Let’s use the phrases ‘characteristics of’ or ‘signs of’ dyslexia instead.

Kussmaul and Berlin are well known for giving us some of the basic terminology we use to talk about dyslexia, but it was James Hinshelwood, James Kerr, and William Pringle Morgan who first studied children and removed previous notions that dyslexia was caused by brain trauma or neglect. Then, in 1925, neuropathologist Samuel Orton presented his first paper on word blindness. Orton was one of the first researchers to advocate phonics instruction for those with dyslexia, an approach that is still highly recommended. In 1949 the Orton Society was created, and it continues as the International Dyslexia Association (IDA) today.

In the late 20th and early 21st centuries, we saw cutting-edge research from Sally Shaywitz, a physician-scientist with Yale University I like to refer to as the Godmother of Dyslexia. She and her colleagues have used functional MRIs to conduct research on students struggling to read. This method provides a non-invasive way to study the reading brain across languages and cultures. The research explored the ability to connect sound to symbols.

We have made substantial gains in our knowledge around dyslexia thanks to researchers such as Shaywitz, gains that, in turn, lead us to pose more questions. Shaywitz is continuing to study dyslexia, as is Maryanne Wolf, director of the Center for Dyslexia, Diverse Learners, and Social Justice at UCLA, and our understanding will continue to evolve in the future.

The damage inaccurate language can cause

My experience growing up and the work of countless researchers prove dyslexia is a hereditary condition, one students have absolutely no control over. Continuing to describe kids as being “at risk” for dyslexia is irresponsible, given everything we know. Why? It smacks of ableism. “At risk” suggests that if kids (or their families) just made a bit more effort, dyslexia could be avoided altogether. But dyslexia can’t be avoided, and dyslexia doesn’t go away. By clinging to the erroneous label “at risk,” we can fall into the trap Dale DiLeo calls “benevolent ableism.” Let’s avoid ableism and use the phrases “characteristics of” or “signs of” dyslexia instead.

The reality with dyslexia is this: You can support a student with good instruction so that their struggle to read and write won’t be as painful. But reading and writing will always be a challenge for them. Accepting this is critical to helping them learn and grow.

We’re at an encouraging point in the history of dyslexia. Let’s make sure we keep moving in the right direction, otherwise the only thing students with dyslexia will be “at risk” of is struggling in school if they don’t receive the support they need to succeed.

Hear more from Dr. Barker on myths about dyslexia and the value of dyslexia screening in her posts “Fact or fiction? The 4 myths of dyslexia” and “The case for K–3 screening and intervention for dyslexia.” Read “5 things to know about the new MAP Reading Fluency Dyslexia Screener” to learn more about how to screen students for dyslexia. 


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