"They aren't testing my knowledge, but how well I can not be dyslexic in that moment."
— Schuyler, age sixteen
Schuyler is a bright and wise-beyond-her-years sixteen-year-old attending high school in Manhattan. When she was just two years old, she told her mother, Erica, that she couldn't see. Yet every doctor to whom Erica took her said the same thing: Schuyler had perfect vision. One doctor went so far as to suggest that Schuyler was an attention-seeking middle child and gave her a pair of fake eyeglasses to wear, telling her that they were "magic." Schuyler wasn't fooled, nor was she attention seeking. She told her mother that the magic glasses were broken.
When Schuyler entered kindergarten, her perceived inability to "see" became an inability to learn to read. Because Schuyler was so bright, she managed to hide this deficit until second grade. Using her intuitive powers, she was always able to discern story and meaning from the pictures in books. However, as the reading became more complex, the strain began to wear on her. When asked to rate all the subjects in school using the faces that we associate with pain levels in doctors' offices, Schuyler wrote a smiley face next to every subject except for reading, which she labeled with a frowning, crying face. Her teacher was stunned — she considered Schuyler one of her best students in reading. When the teacher asked her about it, Schuyler replied, "I have a secret. I can't read."
It wasn't until fourth grade that Schuyler was given a name for why she couldn't read: dyslexia, a neurologically based learning difference that occurs in 5 to 10 percent of school-age children. Dyslexia can present in many different forms — some people have difficulty reading but not deciphering numbers, others have more difficulty with numbers, and still others have difficulty with both. And the nature of the difficulty is also varied — two people with dyslexia might describe their experiences differently, based upon subtle variations in how their brains process visual information. Some people with dyslexia describe letters as being reversed and seemingly disconnected. Others describe the letters moving or vibrating on the page. Some see all the letters correctly, but cannot see the groupings of letters within a word, which form the phonemes that are the building blocks of words (for example, garage = gar + age). As a result, the word seems like a collection of symbols rather than an immediately recognizable word. Some experience similar issues with numbers. Some children have difficulty with their sense of left and right, others with clumsiness and coordination, still others with their sense of time and advance planning.
Researchers are still at the very early stages of understanding how this process works. In any case, and despite these variations in symptoms, difficulty deciphering words and/or numbers at a speed commensurate with one's intelligence falls under the umbrella classification of dyslexia. It is the most common of the learning differences, and in fact children diagnosed with other conditions very often have dyslexia as well. ADD (attention deficit disorder) is the most common brain difference associated with dyslexia. Twenty-five percent of people with dyslexia also have dyscalculia (difficulty learning or understanding mathematics), and some degree of impaired motor development affects nearly 50 percent of all dyslexics. Other, less common learning differences that can exist separately from or along with dyslexia include dysgraphia (difficulty writing and forming letters), dyscalculia (difficult comprehending mathematical concepts); dyspraxia (a speech disability involving impairment of the area of the brain that tells the muscles how to move in order to correctly pronounce sounds); and finally auditory, memory, and processing disabilities, which affect the individual's ability to understand language despite normal hearing and vision.
As Schuyler's experience illustrates, despite how common dyslexia is, it can often go undiagnosed, and many people grow to adulthood believing they aren't good readers, when in fact they have dyslexia. (It is such a common brain difference that it could be argued that it is not so much a "difference" as a trait.) One reason that well-behaved, smart girls often slip through the cracks when it comes to identifying their learning differences is that for decades dyslexia was thought to be more prevalent among males. Girls (and boys) with dyslexia who don't disrupt the flow of the classroom and who manage to struggle through with passing grades are thought to be merely average students. Instead of being average, however, these students with dyslexia are working much harder than others just to keep up.
Dyslexia can vary widely in severity, and Schuyler's is on the severe end of the spectrum. For Schuyler, reading is a process of inference. "I skip words when I read, but then I fill them in in my mind." When she read aloud as a child, her mother pointed out to her, "Four of those words don't exist on this page." But even when Schuyler inferred a different word than the one written, the meaning that Schuyler derived from the passage was the same. "I would turn them into words that made sense to me." Not only this, Schuyler felt she was often improving on the text. "I would say that my way made more sense."
Schuyler is frustrated with the educational system, which she doesn't think caters to her abilities or to others like her. In particular, she objects to the way most tests are structured. She finds "they aren't testing my knowledge, but how well I can not be dyslexic at that moment." It's anxiety provoking for her, this feeling that she has to leap through hoops that aren't made for her. "I wish I could just jump to my future career and learn what I need to know for that."
Even children without learning differences can be overwhelmed by academic expectations and a fear of not measuring up, and for a child like Schuyler this is magnified tenfold. Schuyler's mother, Erica, recalls the deep sadness that her daughter brought home with her from a very young age. Once Schuyler confessed to her teacher that she couldn't read, she was placed in remedial reading classes three times a week. "They tried to drum [reading] into her. She got really upset and would say to me, 'Why me, why me?' The teachers would put baby books in the classroom baskets so she would have something she could read. It was humiliating." Any parent who has soothed a child's anxiety over homework can easily imagine how Schuyler's struggles with dyslexia spilled over into her home life. In Schuyler's case, Erica says, she often "ate her problems," and she has struggled with her weight as a result.
In high school, Schuyler took a class with a teacher who was particularly inflexible. While Schuyler has learned to advocate for herself, in this teacher's class, Erica says, "she was intimidated. It was torturous. She just cried and cried." When Schuyler explained her learning difference and how it impacted her ability to take in information, the teacher told Schuyler that she "didn't believe in dyslexia." Erica went to the administration and successfully transferred Schuyler out of that class. Parents of children with learning differences not only absorb their children's pain, they can experience their own challenges — practical and emotional — in advocating for their children. This requires enormous investment of time at all stages, and a willingness to persist in the face of rejection and exhaustion. Erica recalls that when Schuyler was learning vocabulary, "she would make flash cards, but she wouldn't read them, she would hand them to me and then say let's talk about them. She will spend ten minutes discussing a single flash card, whereas my other kids will [memorize thirty in the same amount of time] and be like, I got it, I got it." Rote memorization doesn't work for Schuyler. In social studies, for example, "she has to understand the peasants, the serfs, the feudal system, the monarchy. She could write for two hours on something, but don't ask her thirty vocabulary words."
For her career, Schuyler would like to change things for other people with learning differences. "In my rampages with my mom I would say I want to change the schooling for dyslexic kids. I don't find [it's fair] to be graded against kids whose strengths are my weaknesses and vice versa. I have always said that dyslexia is an ability, not a disability. I know in the real world I am going to be more successful than the girls who can regurgitate information. I have all these ideas that are not even explored yet, and so I feel as if I am going to do something in this world that is going to matter."
Schuyler has tremendous internal drive, and this will help her enormously in overcoming the challenges she has yet to face. It's a shame, however, that so many interesting minds are crammed into a cookie-cutter idea of what a good student should look like and should be able to do. National Book Award–winning author John Irving, who is dyslexic, was considered "lazy" and "stupid" by teachers in school. In response, he says, "I simply accepted the conventional wisdom of the day — I was a struggling student; therefore, I was stupid." If it hadn't been for his love of wrestling and the support of his coach, Irving might have dropped out of school altogether.
While there is a nationwide conversation about how the United States can become more innovative and competitive, some of the most original thinkers among us aren't at all well suited to the regimented academic expectations (measured by standardized test scores) and requirements to excel across all subject areas that our educational system demands. And many of those original thinkers are — not coincidentally — highly dyslexic.
Testing often feels like the measure of our lives — and of our lives' potential. From earliest childhood — and particularly so in the most competitive school districts around the country — we are judged based upon a set of external rules and standards. Some of us excel. Many of us, particularly those with dyslexia, do not. And while we might console ourselves with the thought that we, or our children, aren't "good test takers," nonetheless the judgment is made, or at least implied: those who do well on the test are smarter than those who do not. And thus a child who struggles to decipher words is labeled as not as bright or gifted as her peers, and she's put into a classroom or school that is thought to better match her abilities.
For many students with learning differences, the challenge isn't simply that they don't test well, it's that they perform unevenly. Our educational system was designed around an expectation of uniformity that leaves no room for the angular thinker — the person whose performance is jagged, with strong aptitudes in certain areas and disinterest or outright deficiency in others. And yet, when we look at the geniuses who have accomplished the greatest things, and who have made the most revolutionary contributions to the world, we see — almost without exception — a group of what I call very "angular" thinkers. Among those geniuses you would find individuals who were not simply better at some things than others, but who exhibited genuine deficits in certain areas. These were not students who had mostly A's but lapsed into a B or a C in one or two classes. These are individuals who simply failed in certain — sometimes most — areas; individuals whose brains did not work in the way that those subjects, or styles of teaching, demanded.
The net label learning difference catches within it an enormous amount of individual variation. The choice of the word difference over disability is intentional and substantive. Whereas disability is used to make a qualitative statement about the individual learner's intelligence, difference is stripped of value, emotional content, and, most important, shame. The latter is why it takes, on average, two years from the first appearance of a learning difficulty for parents to bring their child to an expert for evaluation. Because we focus so much attention on the negative aspect of a learning difference — the qualitative judgment of a disability — we become afraid of the implications of a diagnosis, and we resist it altogether. The result is children who suffer through feeling stupid, sometimes for years, and who grow into adults who may learn to compensate for their differences, but who still carry a load of embarrassment and self-loathing.
This isn't the whole story, of course. There are many individuals with learning differences who, through strength of mind and character, and with some key interventions, have been able to persist past labels and pigeonholes. They have been able to make their way through years of schooling often by working twice as hard as everyone else, and have eventually achieved the freedom to pursue what they really love. And this is when they truly thrive. These individuals include scientists, writers, artists, and entrepreneurs. And the exciting — and inspiring — characteristic that they have in common is the degree to which their talents are a direct result of their differently thinking brains.
WHAT IT MEANS TO HAVE A LEARNING DIFFERENCE
Learning differences take myriad forms, many of which are complex and haven't yet been fully studied or understood, because they occur in such small segments of the population. However, researchers estimate that among all those who are thought to have a learning difference of some kind, fully 80 percent present most significantly with dyslexia. According to Matthew Cruger, senior director of the Learning and Development Center at the Child Mind Institute, "learning disorders as a category is the largest group of all kids receiving special education services. More than autistic students by a huge margin, and far more than kids who have emotional disturbances. [Children with learning disorders] are about 45 percent of the population of kids receiving special education services. And the majority of LD kids have dyslexia." It's entirely possible that most, if not all, other learning differences either include or are permutations of the central diagnosis of dyslexia.
Despite how remarkably common dyslexia is, there is generally very little understanding of what it means, even among educators. If you ask most people to define the disorder, they might say that it involves a visual shuffling of letters and digits, and that those with dyslexia have difficulty reading. This idea of dyslexia as letter reversal dates at least as far back as 1887, when Rudolf Berlin, a German ophthalmologist, first coined the phrase. In 1889 W. Pringle Morgan wrote an article for the British Medical Journal describing the perplexing phenomenon of an otherwise bright patient who was unable to learn to read.
Very little changed for well over a century after that original observation. By the 1990s, advances in neuroimaging definitively proved the neurological basis of dyslexia. In 1998, Sally Shaywitz, one of the foremost experts on dyslexia, and her colleagues in the Department of Pediatrics at the Yale University School of Medicine studied dyslexic and nondyslexic readers using a functional MRI, which produces computer-generated images of the brain as it performs activities. They found that dyslexic readers "show less activation in a brain region linking print skills to the brain's language areas. Specifically, dyslexic readers showed reduced activity in a large brain region that links the visual cortex and visual association areas (angular gyrus) to the language regions in the superior temporal gyrus (Wernicke's area)." While this illustrates that dyslexia is a disorder of language acquisition and not of sight, the perception of dyslexia as a visual disorder persists. In the past, some dyslexic children were even given eye training, as if dyslexia were a mechanical as opposed to a neurological phenomenon. Today, children who are diagnosed with dyslexia are still often thought to need hours of extra reading instruction, as if more rote drilling might finally teach them to decipher written words and to spell properly.
This confusion is somewhat understandable since the dyslexic brain does take in visual information differently from the nondyslexic brain. Adding to the complexity, dyslexia can present in ways that are subtly different, and if you ask two individuals with dyslexia to describe their experiences, they will have some areas of overlap, but not necessarily all. For example, some people with dyslexia excel at math and others struggle. Some people with dyslexia always find reading to be a painful chore, and others eventually love to read. But there are neurological commonalities that have been proven to exist. Shaywitz and her husband, Bennett A. Shaywitz, of the Yale Center for Dyslexia & Creativity, have spent decades researching the particular strengths and weaknesses of people with dyslexia. As Sally Shaywitz writes, "reading ability is taken as a proxy for intelligence; most people assume that if someone is smart, motivated and schooled, he or she will learn to read. In dyslexia, the seemingly invariant relation between intelligence and reading ability breaks down." In a 2010 study published in Psychological Science, Shaywitz and her colleagues charted definitively how IQ can be high in a dyslexic, while reading ability can be very low. The two are "uncoupled" in a way not found in the nondyslexic individual.