To Read or Not to Read: Answers to All Your Questions About Dyslexia

by Daphne M. Hurford

Overview

This comprehensive guide is a one-of-a-kind book that addresses the complexities of dyslexia in an open and thoughtful format from teacher and author Daphne M. Hurford.

Winner of the 1999 Margot Marek Book Award, an award given by the New York Branch of the International Dyslexia Association for “the best book, fiction or nonfiction, written for parents and their children that will further their understanding of learning disabilities,” Hurford has penned the first guide to educating and understanding the complexities that come with dyslexia.

Complete with ten easy-to-follow chapters and inspirational stories from Hudford’s students and notable figures with dyslexia, such as Winston Churchill and Nelson Rockefeller, this guide gives advice on how guardians and educators can tailor educational programs to meet individual needs.

Exploring what can be done to help those with dyslexia by evaluating different programs and teaching methods available, To Read or Not to Read is a welcome resource for anyone who knows the experience of living and learning with dyslexia.

Product Details

ISBN-13:	9781476730059
Publisher:	Scribner
Publication date:	11/15/2012
Edition description:	Reprint
Pages:	240
Product dimensions:	6.00(w) x 9.00(h) x 0.70(d)

About the Author

Daphne M. Hurford is the author of To Read or Not to Read.

Read an Excerpt

Chapter Two Dyslexia Defined
Pinning Down the Elusive Elements

Everyone thinks he knows something about dyslexia, even if what he "knows" is incorrect. Everyone also knows someone who is dyslexic, or who might be dyslexic, or who is just wondering if indeed dyslexia might be the reason reading is so fatiguing or writing so tedious. Dyslexia knows no age, gender, or class boundaries; it afflicts upwards of 15 percent of all Americans. The brilliant are as likely to be affected as those of average intelligence, the rich as likely as the poor, the adult as likely as the child. There is no cure for dyslexia, either; it doesn't go away. Dyslexics have to learn to work with and around the condition, not dream about getting over it. But just what is this thing called dyslexia? That is a question that I am asked regularly. More than a hundred years after the disorder was first identified, confusion and misinformation continue to surround its definition. So, before we get into just what dyslexia actually is (and what to do about it), here is a list of things that it definitely is not:

• It is not stupidity;
• It is not laziness;
• It is not willfulness;
• It is not lack of interest;
• It is not difficulty seeing or hearing;
• It is not simply the reversal of letters, numbers, and words;
• It is not anything to be ashamed of;
• It is not the end of the world;
• It is not necessarily permanently disabling; and
• It is also not "curable."

Even though this list of "nots" is also a list of facts, not opinions, most dyslexic children and adults have at one time or another been called stupid, or been accused of being lazy, or been told they were just being stubborn, and that is why they were having such trouble learning to read, or that they would be able to learn much more easily if they just wanted to...if they were just more interested...if they would just pay attention...if they would just work a little harder. Most have also been ashamed of being dyslexic, have tried to pretend they weren't, have thought it made them less smart than and inferior to others. Most have also felt at one time or another that being dyslexic was the end of the world and that they would never be able to get out from under the weight of it.

I met Valerie MacCarthy when she was a junior in high school; I asked her to be a member of a panel of students with learning problems who would explain what school was really like for them to a group of their teachers at a workshop I was conducting. She became the star of the event. Attractive, intelligent, and extremely articulate, Valerie told her story, and throughout the room there were gasps and tears from faculty members who all thought they knew her well, but who had no idea what she had gone through before meeting them.

When she was just a little girl -- and a privileged, loved, adorable little girl who went to a well-regarded private school in Manhattan -- Valerie had felt ashamed, had felt inferior to her classmates, had felt it was all her fault, and had been terrified of the future. Toward the end of first grade, Valerie had not yet learned to read. Her school did not approve, and, as is often the case, her teachers blamed her. They thought she just wasn't trying hard enough. As her difficulty continued, they became less and less patient. One day during an arithmetic test, she became confused by the directions given and was unable to follow them properly -- a typical experience for a dyslexic. When everyone else was finished with the test, Valerie was still at the beginning. And she knew the material, too, but no one bothered to find that out. Instead, her teachers made the seven-year-old stand up in front of the class and explain to the other students just how stupid she was. They told her parents she was stupid as well. Valerie believed them, but, luckily, her parents did not. In second grade, her teacher even occasionally whacked her on the back with a meter stick to cure her of what he thought was her stubbornness, her refusal to learn, and her lack of attention and effort. This did not take place in Victorian England, either; this was the 1980s, in New York City.

Often Valerie's papers looked like the jumble that was inside her head when she tried to read and write. Once during a test, the teacher dealt with her difficulty by walking by the child's desk and sweeping books, papers, and pencils onto her lap and the floor. Then he told the humiliated eight-year-old to pick everything up. As soon as she started tidying up, however, he told her not to do that, to concentrate on her work. When she went back to try to finish up what she had been doing, he scolded her for her messiness and told her to clean everything up. The little girl could not win no matter what she did, and she received small comfort from her classmates, who were all so shocked and afraid they would be treated the same way that they shunned her. Soon Valerie constructed a protective shell around herself that was all but impenetrable. She tried to appear "normal," but she was in agony, and her parents were at their wits' end. They didn't know what was wrong, what to do, or how to help. Finally, a friend suggested they have her evaluated, which they did. The diagnosis: dyslexia.

I met and worked with Rebecca Tomasini the summer after what should have been her senior year in college. Rebecca had had no trouble learning to read as a child. In fact, all through her grammar school days in western Massachusetts, she was an honor student, and on the gifted-and-talented track. Then, in ninth grade, she hit the wall. She couldn't do the work. She could think, and think well, but she couldn't read what she needed to read, and she couldn't express herself in writing. Her teachers blamed her as well; they said she was lazy and needed to work harder, that was all. As she says now, "Even in grammar school my papers looked as though an orangutan had written them. Anybody with proper training would have known something was wrong." But no one did. Rebecca was scared. She was confused. She was humiliated. And she was furious. Her grades plummeted; she was taken out of the classes for the gifted and talented and put in with less and less able students. Her behavior bottomed out as well. In very little time, Rebecca changed from a spirited, curious, smart kid into a rebellious and insolent teenager. She was miserable. She wanted so much, and she was able to get so little. Hungry for intellectual stimulation, she ended up at a mediocre college where most of the all-female student body was preparing for a Mrs. degree, while Rebecca dreamed of becoming a scholar, an expert on the Renaissance. She knew she was smart; she didn't know why she couldn't achieve what she wanted so desperately, but she knew something was drastically wrong. She had to find out, and she had to fight for what she wanted. She found an educational psychologist, and she was tested. The diagnosis: dyslexia.

For most of the century-plus that people have been interested in dyslexia, discourse about the disability has been marked by disagreement and dispute. Even now there is more than one "official" definition, and terminology is still in flux. For years the condition was referred to as specific reading disability; another term often used is developmental dyslexia, or even specific developmental dyslexia. All are meant to distinguish it from the word problems caused by brain injuries or disease -- called acquired dyslexia, or alexia. The World Federation of Neurology offers a definition for specific developmental dyslexia as follows: "...a disorder manifested by difficulty in learning to read despite conventional instruction, adequate intelligence and sociocultural opportunity. It is dependent upon fundamental cognitive disabilities which are frequently of constitutional origin."

The International Dyslexia Association, which used to be the Orton Dyslexia Society, named for Samuel T. Orton, the American doctor who, with his wife, did pioneering work in the field in the early decades of the twentieth century, adopted a newer, more precise, more inclusionary definition of the reading disorder in 1994 to replace the many vague, exclusionary definitions that had been floating around. "Dyslexia is a neurologically based, often familial disorder which interferes with the acquisition and processing of language. Varying in degrees of severity, it is manifested by difficulties in receptive and expressive language, including phonological processing, in reading, writing, spelling, handwriting, and sometimes in arithmetic. Dyslexia is not a result of lack of motivation, sensory impairment, inadequate instruction or environmental opportunities, or other limiting conditions, but may occur together with these conditions. Although dyslexia is lifelong, individuals with dyslexia frequently respond successfully to timely and appropriate intervention."

At about the same time, the Orton Research Committee proposed its own working definition for research purposes, as follows: "Dyslexia is one of several distinct learning disabilities. It is a specific language-based disorder of constitutional origin characterized by difficulties in single word decoding, usually reflecting insufficient phonological processing. These difficulties in single word decoding are often unexpected in relation to age and other cognitive and academic abilities; they are not the result of generalized developmental disability or sensory impairment. Dyslexia is manifested by variable difficulty with different forms of language, often including, in addition to problems with reading, a conspicuous problem with acquiring proficiency in writing and spelling."

So, even now, and even within the organization that has done the most to spread the word about dyslexia, there continues to be a measure of debate about definition. For our purposes, the official Dyslexia Association definition makes the most sense; it is clear and quite broad-ranging, and it also includes the notion that something can be done about all of this, that dyslexics often "respond successfully to timely and appropriate intervention." Margaret Rawson, a pioneer in the field and a founder of the Dyslexia Association, described dyslexia a bit more succinctly and poetically when she said, "The differences are personal; the diagnosis is clinical; the treatment is educational; and the understanding is scientific."

Valerie is one who certainly responded successfully to her just-in-time appropriate intervention. When her parents told her school about her diagnosis, officials there said, "Nonsense. There is no such thing." The MacCarthys flew first into rage, then into action. They changed their daughter's school to one that understood what was wrong, that appreciated her, and that knew how to teach the little girl. Then they got a properly trained learning specialist to work one-on-one with her after school, to teach her to read in the ways that she could learn. When she first started at her new school, Valerie couldn't believe how friendly the other students were or how nice the teachers were. She soon came to feel safe and enjoy it, though, and she had an unexpected pleasure as well. "Because my first school was somewhat accelerated," says Valerie now, "I was ahead for the first time in my life. It was great, but it lasted one month at most. Then I wasn't exactly sure what was going on or how to feel about it." Most surprising to Valerie was the fact that she wasn't the only student having difficulties; there were several others in the same situation as she, and they talked about their problems, shared their fears. "That was comforting in a way," recollects Valerie, adding, "but some of them seemed to have surrendered. It was scary, too, and it made me realize I had to push myself to do more."

One enforced activity in the highly structured school turned out to be a very felicitous event for Valerie. Each of the eighth-graders at her all-girls academy was required to try out for the spring musical; the year Valerie was in eighth grade, the play was The Wiz. Valerie had no interest in being in the production, but she had no choice. A day after the auditions, the teacher in charge called Valerie's mother. The child had exhibited such a powerful natural singing voice that they wanted her to play Dorothy, but they were afraid she would be unable to memorize all her lines because of her dyslexia. Would her mother be willing to help? Would she! She had been so worried about her daughter that she would do anything. Now, finally, there was some hope. Here was an area where Valerie was not being left behind; in fact, she was leading the pack. Mrs. MacCarthy seized the opportunity. She helped her daughter learn her lines and lyrics for The Wiz; she helped with Valerie's homework, and she enrolled her daughter in Saturday singing lessons, which had unexpected benefits. Valerie was a smash hit in The Wiz; she went on to star in every other musical during her years in high school, and she went from voice lessons to theory to ear training, from an hour or so a week to all day Saturday, 8:30 A.M. to 5:00 P.M. She had found something she truly liked and something she excelled in. She has since graduated from college, and she is currently in Italy, training for an opera and concert career.

As for Rebecca, she would have been a great deal better off if her intervention had come much earlier in her life. After struggling so in high school and then finding herself in what she felt was an utterly inappropriate college, she really hit bottom. She knew she could do and have more, but she was locked into an inability to show others what she could really accomplish. Things got so bad she found herself on Prozac. Then somehow she discovered pools of energy and strength. With the help of a professor who recognized her superior intellectual ability and was willing to speak up for her, she was accepted into Smith. At last she was reaching her own level; she was thrilled and terrified. She started Smith that January; the following summer we worked intensely together, laughed uproariously together, and cried together.

Over those few short months, Rebecca learned how to monitor her reading, how to form a thesis statement, how to tame dense text. It was a fabulous start, but she needed more, and the college was committed to giving it to her. The school was new at this, though, and unsure of how to proceed. Rebecca's years at Smith were not easy; she had constant battles to fight, and many times she thought about chucking it all, but she didn't. She is now a graduate of a Seven Sisters college, where her mind was permitted to grow and be challenged as she had always dreamed, and she has also received an M.A. -- in Renaissance studies -- from the University of London.

Educators were not the first to be aware of dyslexia; ophthalmologists were. The first description of "word blindness," by Dr. W. Pringle Morgan, appeared in the British medical journal The Lancet in 1896. Not long after, in 1902, another ophthalmologist, James Hinshelwood, described a patient of his who was thought to be bright in many ways but who couldn't seem to learn to read. Hinshelwood thought the difficulty was somehow with the boy's visual memory, with his ability to remember what the letters and words looked like, and that the cause was either an injury to his brain or some sort of congenital problem. Dr. Samuel T. Orton, a neuropathologist and psychiatrist, in 1925 used the term strephosymbolia, or "twisted symbols," to label the "difficulty with words" that he saw in patients in his psychiatric practice, and he also described the reversals and mirror writing that many dyslexics experience but that is not limited to dyslexics. Even while Dr. Orton was doing his work at Columbia University's College of Physicians and Surgeons, though, Ph.D.'s at Columbia University's Teachers College were saying what Valerie's teachers much later said, "Nonsense. That can't be right. No such condition exists."

As it turns out, even though Dr. Orton was one of the first to link dyslexia with language, a concept agreed upon by all today, his early work concentrating on visual processes and deficits was what he was long known for; those reversals became the symbol of dyslexia, and people became convinced that the only thing a dyslexic had difficulty with was keeping letters and symbols in the right sequence. Many people today still think that that is all there is to dyslexia. Jokes on the subject even continue to make the rounds, such as, "If MADD stands for Mothers Against Drunk Driving, then what does DAM stand for?" Answer: "Mothers Against Dyslexia."

Once people began to believe that reading problems were centered in the eyes and the ability of the eyes to translate what they saw, treatment plans started revolving around training a person's visual perceptual abilities, and optometrists and others offered visual training as the key to remediating reading problems. For years this training was sought by many, including the parents of Walker Harman, Jr., a young man currently in law school with whom I worked when he was a student at Marymount Manhattan College.

Walker is from Texas; his mother is on the obsessive side, particularly about him, her eldest son. So, when it was recommended that Walker not move on to second and then not to third grade because he had not yet learned to read, Mrs. Harman rallied her troops and contacted every known expert in the field. At a very tender age, Walker was consulting a series of doctors and specialists. He saw several around Dallas, and he came to New York every six weeks to receive treatment that was meant to retrain his eyes, body, and brain to see symbols as they actually were. Walker did eye exercises; he walked on balance beams; he batted at balls dangling on strings from the ceiling; he even carried a pegboard around with him so that whenever he had some free time, he could practice inserting different colored pegs in it in an assortment of ways. Did any of it do any good? "Well, it did help me to learn to love New York," says Walker today with a sly smile. And that is about all it did; it certainly didn't teach him to read.

Yet, despite the lack of documented success in remediating reading difficulties, vision therapy for learning problems continues to be offered today by many, many optometrists. It is a therapy that appeals to parents to whom a connection between reading difficulties and eyes makes sense -- after all, what is the major pathway of written words to the brain? The eyes. It is hard to resist thinking that if only what went into the eyes were somehow dealt with differently by them, then things would improve, and reading would be a much easier task.

There is widespread agreement now that dyslexia is a language disorder, meaning that the difficulty is not in the eyes, or even in the ears, but in the language acquisition and processing centers of the brain. So, training the eyes or training the ears won't make any real difference. It's the brain that needs to be trained. For a long time, it was thought that those language acquisition and processing areas were centered exclusively in the left side of the brain, while logic and artistry and spatial awareness were the specific purview of the right. We know now that it is not as simple as that. There is much more interchange between the brain hemispheres than we had once believed, and although the left side is the primary locus, language processing involves, to varying degrees, both right and left sections. Therefore, dyslexics are not just "right-brainers," as they were long described, although many often show great strength in conceptual thinking -- seeing the "big picture" -- as well as in visual and spatial skills, all of which are more associated with the right hemisphere of the brain than the left. Many graphic designers, architects, computer animators, filmmakers, athletes, and dancers are dyslexic, but then, so are many lawyers, doctors, teachers, and writers, even writers who create some of the most complex and eloquent language. Yeats was dyslexic and so was James Joyce (which might not come as a complete surprise to many who have struggled through Ulysses).

At the moment, the most intense concentration in reading research is on phonology, most particularly phonemic awareness as the "most potent" indicator of the ability to learn to read, and on deficits in this awareness as a prime underpinning of dyslexia. Phonemes are the smallest sounds we hear in words, most often the sounds of one letter; every word in the English language is a combination or recombination of just forty-four phonemes. Phonemic awareness is the ability to identify these sounds, to isolate them within a word or syllable, to move them around, and to count how many there are. A very simple example is the ability to determine that there are three sounds in the word cat (c-a-t), that they are kuh-aa-tuh, that if you were to say them backward, you would say tuh-aa-kuh, and if you were to leave out the aa, you would have kuh and tuh. Without this ability, it is much more difficult to learn to decode words, to translate print into sounds.

The late Isabelle Liberman did landmark studies on phonological awareness in the 1970s at the Haskins Laboratory in New Haven. She showed that children develop these higher-order skills as they mature, and that by school age, they should be proficient at them. Her experiments, which asked children to tap out the number of sounds they heard in words, showed that none of the four-year-olds in the study could identify the correct number of sounds (they were too young), that 17 percent of the five-year-olds could, and that 70 percent of the six-year-olds were able to do so. That meant that 30 percent of those who were old enough to be able to tap out the sounds couldn't do so.

To look at whether this ability to isolate sounds was a real indicator of their future reading capability, Liberman gave reading achievement tests to that six-year-old group when they started second grade. Of the 30 percent who could not earlier identify the sounds correctly, half were in the lowest reading group; not one was in the highest. So 15 percent of the children in her studies were having a very difficult time learning to read. Current statistics from the National Institutes of Health estimate that at least 15 percent of school-age children are dyslexic; Isabelle Liberman's studies of almost three decades ago would tend to support those numbers.

In order to read, write, and spell English, an alphabetic language, one must be able to decode, that is, be able to relate the symbols, the letters, to the sounds, or phonemes, and the sounds to the symbols. And it has to be done quickly. Fluent readers sail through a passage with few to no glitches; they can process with ease all the different phonemes that make up the words. Dyslexics have difficulty doing this; they have to work much harder to recognize or sound out each each word, so their processing is much slower and less smooth. Also, their capacity for holding the individual sounds of a word in short-term memory can be weakened, so they might forget the first before they have figured out the third or fourth, and have to go back and try a few more times before they have the whole word. In addition, their ability to call up a word stored in memory can be much slower and less reliable than that of nondyslexics. That is why dyslexics often grope for words and have difficulty answering direct questions, why they talk around and describe the answer while the exact word or "label" remains slippery, why they frequently end up saying, "Forget it." On the other hand, skilled readers, who can find stored words more easily anyhow, also increase their ease with word recall by reading more and using words over and over, which helps to fix them firmly in their memories.

Phonemic awareness, the underlying foundation of reading, is also enhanced, enlarged, and reinforced by reading. Therefore, skilled readers can read more because they have this ability to manage the parts of words, and the reading they do makes them more and more adept at manipulating the language. A study at Jerusalem's Hebrew University confirmed this theory. It showed that training at-risk kindergartners in phonemic skills helped them learn to read more readily and that kindergartners and first-graders improved their skill in chunking words into phonemes drastically once they learned how to read. Nothing builds muscles like weight lifting, and the stronger you are, the more weight you can lift. The same goes for reading.

Keith Stanovich of the University of Toronto takes this thought one step farther. He posits that there is a core of phonological deficits that interferes with the ability to learn to decode words, and he goes on to describe an unfortunate reciprocal relationship that he has termed the Matthew Effect. It starts with the dyslexic having difficulty learning to read words because of this core, this lack of phonological-processing abilities, including a lack of phonemic awareness. Then, because reading is so difficult, the dyslexic reads fewer books, magazines, and newspapers than the stronger reader, and also reads easier books, less complicated and sophisticated prose. So, while the more fluent reader's basic phonological skills are growing and developing because of his ability to read and his greater exposure to the written word, the dyslexic's basic skills do not get nourished and strengthened and instead remain a hindrance. And on it goes, in a downward circular movement. Where does Matthew come in? Well, as in the Bible, if you apply the concept of reading to Matthew 13:12, you find that poor readers get poorer while rich readers get richer. Nothing succeeds like success, and nothing begets failure like failure. There is a great deal of research to support Stanovich's theory. Studies recently conducted in California found the not-so-surprising information that the fifth-grader whose reading scores are very high, in the 90th percentile, reads approximately two hundred times more text per year than the fifth-grader whose scores are very low, in the 10th percentile. Many of us in the field can also corroborate it anecdotally; we have taught students who were not diagnosed until late and were caught up (or actually down) in the Matthew Effect whirlwind.

It doesn't have to be that way. Dyslexics don't have to be left out of that particular success loop. They don't have to become victims of the Matthew Effect. They can join the upward spiral, they can learn to read and understand sophisticated material, but they must be taught to do so in ways that work for them. And believe me, there is nothing in the universe more satisfying than working with such a student and reversing that spiral.

According to the Dyslexia Association definition, dyslexia is "neurologically based"; it's right there in the neurons, the building blocks of the brain, in the arrangements of them, in the sizes of them, and in the quantities of them. Getting to the point where the Association could make such a statement wasn't easy. Though most involved with the field felt from the earliest days that there had to be a neurological basis for dyslexia, for a long time the only possible way to draw any conclusions was by studying the behaviors of dyslexics and relating them to behaviors of people with known neurological conditions. It was hard to get a look at the brain. So, much of the early research was based on observing people who had lost various language functions because of accidents, strokes, or diseases.

Dyslexia is still a disorder that is identified by behavior -- reading is a behavior, and so is being unable to learn to read -- but modern technology now makes it possible to create various computer models of the neural networks of human brains and to see how they behave, and to watch real brains in action during the reading process and to see what is going on where. That doesn't mean that vital information was not gathered before fast and powerful computers and assorted scans and MRIs came into existence, but it does mean that more information is being gathered by more people faster and more accurately. Early, noninvasive machinery like EEGs didn't yield much valuable information about what goes on in the brain to make reading easy or hard, and animal models are no good for most studies because reading is a distinctly human activity. Now, though, neuroscientists are marching rapidly across that bridge to the twenty-first century, and they have a wide array of expensive toys to help speed them along. PET scans and functional MRIs have made it possible to look at and compare brains of living beings and quite noninvasively to study the brain during the act of reading. Brain imaging with functional MRIs has been an intense focus at several spots, with Sally and Bennett Shaywitz and their colleagues at the Yale Center for the Study of Learning and Attention publishing the most in mainstream journals and receiving the most mainstream attention for their efforts. What the studies have been trying to show is which areas of the brain are at work when its owner is reading or trying to read. With two groups of adults, one dyslexic, the other not, the Shaywitzes have been able to track the reading process thr ough the brain and vividly demonstrate what happens where and what the differences are between the good and poor readers. This is the first time that it has been possible actually to see that there is, in G. Reid Lyon's words, "a neurological system that undergirds all the components of reading and that a neurobiological signature underlines poor performance on reading."

Their research really began with a French brain surgeon and anthropologist named Paul Broca. He discovered that language functions were localized in the left frontal region of the brain, the inferior frontal gyrus, now known as Broca's area, in 1861. Over the years since then, many others have contributed greatly as well. One hundred years after Broca came the "father" of modern behavioral neurology, Norman Geschwind, a graduate of and professor at Harvard Medical School. Geschwind was one of the very first to study structural differences in the brains of dyslexics and nondyslexics, and he was the first to look at the possibility that the language areas of nondyslexics' brains might differ in size from each other, while those in the dyslexic were the same size. Study continues actively on these brain "asymmetries," as well as on the connections between areas, the nerve fibers that carry information.

Geschwind was also interested in the relationship of gender and dyslexia, left-handedness and dyslexia, and immune and allergic disorders and dyslexia. He connected all three; he thought it might be possible that the male hormone testosterone acted on the fetus to weaken the immune system and the left hemisphere of the brain. Norman Geshwind died prematurely in 1984, at the age of fifty-eight. His research has been carried on by Albert Galaburda and others, who are still looking at what is called the testosterone hypothesis. They have found enough in their studies, particularly as related to handedness, to keep on looking, but they have not yet come up with conclusive evidence linking either left-handedness or immune disorders to dyslexia. Geschwind was certainly not the only person interested in reading disorders and handedness, the main reason being, of course, that the opposite side of the brain controls handedness -- that is, if you are left-handed, it is quite possible that your right-brain hemisphere is more developed than your left-, where so many of the language areas are located. Those of us who work with dyslexics would tell you that many are left-handed, that left-handedness stands out as one of those red flags, and that it is more difficult for someone who is left-handed to adapt to the left-to-right sequencing required of readers of English.

Geschwind wasn't the only one interested in gender and dyslexia, either. Until quite recently, it was thought that male dyslexics outnumbered female by at least four to one. Now it is clear that is not so. Anecdotal evidence would indicate that two societal biases were at work in these numbers. The first is the fact that the education of boys has always been much more highly valued than that of girls, so there was traditionally much more concern when they did not do well. Dyslexia research and treatment pioneer Margaret Rawson, in her 1968 book addressing the adult accomplishments of the dyslexic boys she studied at a coeducational private school in Pennsylvania, commented, "With girls, schooling and employment outside the home take a role secondary to homemaking, and homemaking, however important, obviously cannot be graded for comparative purposes." The second societal bias in favor of identifying more boys with dyslexia than girls is that traditionally girls who struggle in school tend to become shy and withdrawn, while boys with difficulties tend to "act out" and call attention to themselves. More recent studies, such as the Connecticut Longitudinal Study (1983­1996) at Yale and others, have indicated that females seem just about as likely to be dyslexic as males. In fact, according to G. Reid Lyon of the National Institutes of Health, even though schools continue to identify as dyslexic 3 or 4 boys for every 1 girl, studies the NIH has funded around the country (including the Yale study) show that the real numbers are 1.2 boys for every girl.

According to the Dyslexia Association definition, dyslexia is also "familial"; brothers, sisters, cousins, and others of the same families are often dyslexic, and it is "heritable," passed down from one generation to another. Familial and heritable do not necessarily mean that having a dyslexic parent or sibling guarantees you will be dyslexic, but they do mean that there is about a 50 percent greater chance of having the disorder if a relative has it. Walker Harman's father is dyslexic; academic success was so nonexistent for him when he was a teenager that school officials tried to take him out of high school and put him in a vocational school where he would get some practical training, but his mother intervened ("threw a fit," says her grandson), and he stayed in a college preparatory program. He went on to Baylor, where he graduated with fairly respectable C's, then to the University of Oklahoma Business School. He is now a very successful businessman/hotelier, who, according to his son, still can't spell or read, who didn't read a book for pleasure until he was forty years old, and who didn't discuss his difficulties with his son until Walker junior was grown, so ashamed was he of his early memories of failure. Neither one of Rebecca Tomasini's parents is dyslexic, nor is her brother, but she has an uncle who is.

Cyprian is a dyslexic boy I have worked with longer than any other student in my practice. He is now in high school; we met when he was in the second grade. Cyp was having a terrible time learning to read, and his parents and teachers were as confused and frightened about it as he was. After a few months of working with him, I arranged for a conference with his parents to discuss their son. They were very nervous, afraid of what they were going to hear, but after I described the real progress he was making, as well as the difficulties he was facing and learning to deal with, his father blurted out, "Well, you know, I've never really been able to read."

Studies are ongoing constantly on the genetic aspects of dyslexia. Researchers at the Boystown Institute, and on the Twin Project at the University of Colorado, Boulder, among others, continue to yield important information. Scientists have been searching for the "dyslexia gene," and they appear to be closing in on a candidate or two. Genes located on both chromosome 6 and chromosome 15 appear to be the most likely -- with phonemic awareness deficits linked to 6 and single-word-identification deficit linked to 15 -- but they think others are involved as well, and much more detective work needs to be done before any conclusions can be drawn. Bruce Pennington, professor of psychology and head of the Developmental, Cognitive and Neuroscience Program at the University of Denver, says, "There is a great deal of genetic involvement in building a brain. Thirty to forty percent of the one hundred thousand genes in the body are uniquely expressed in the brain."

Okay, so dyslexia is genetic. What isn't? One beautiful, charming mother of a seventh-grade boy I worked with felt very guilty that her son had inherited her learning weaknesses. She could hardly forgive herself. Yes, he had, I explained to her, but he had also inherited her good looks, excellent sense of humor, and natural charm; he was handsome and the most well-liked boy I have ever known. Plus, she was getting him the help that he needed, help that no one knew to get her. Many geneticists talk about the fact that hereditary predispositions that seem negative often also have a very positive side: that is, sometimes a seeming genetic weakness offers protection against something much more dangerous. Perhaps that was at work with this young man and his mother.

Anyhow, is the fact that dyslexia is genetic all there is? No, not at all. Dyslexia may be genetic, but it is not just genetic; there is more to it. If you have the gene or genes, are you guaranteed to be dyslexic? No, no, no. First, interestingly enough, it appears that some people are born with the gene but unaffected by it. Second, our brains are not "hard-wired" at birth; they are not completely formed, set, unchanging and unchangeable. Quite the contrary. They are incredibly plastic, malleable, capable of change, growth, development. We can alter and improve ourselves in all ways. Bruce Pennington says the brain is an "open system," and he adds, "The developing brain must use its environment to shape its patterns and connections, and as the brain learns, its structure changes, so does the size, and even how many synapses there are. Not all the structures of the brain even show genetic influence, and some, like the cortex, develop late and are much more susceptible to environmental than genetic influences."

Studies of the human brain not devoted to unearthing the etiology of dyslexia and other learning disabilities have yielded similar information that could and should have a huge impact on how we take care of children, particularly very young children. These studies show that the electrical activity of neurons that takes place even in the prenatal brain, which used to be thought of as a by-product of the building of the brain, actually has an active role in the shaping and wiring of that brain. The firing of neurons is spontaneous before birth and is controlled by sensory experiences once the child is in the world. Nature and nurture. According to these studies, it appears that the sensory experiences are the overseers of the lopping off of superfluous neurons that takes place in every brain as the child develops and grows. In other words, what goes in through the senses exerts a great deal of control over which neurons and neural networks will be permitted to stay and labor in the brain and which will be eliminated. Humans are born with all the neurons they'll ever have. Those that receive stimulation grow and develop; those that are not used are discarded. Therefore, obviously, the better the sensory input, the better the development. And the most important time for this development? Ages one through three are all vital, but the first year of a baby's life is the most powerful one. This doesn't mean that parents should be reading War and Peace to their six-month-old babies to get them ready for reading, but it does mean that all that talking and cooing and singing and touching and snuggling that parents tend to lavish on babies helps their offspring develop properly in all areas, including la nguage. Evidently, nature and nurture are not separate, discrete entities. Nature certainly affects nurture; there is that genetic component to dyslexia, but nurture has its strong impact, too. Remember, part of the Dyslexia Association definition says that "individuals with dyslexia frequently respond successfully to timely and appropriate intervention." Every indication is, though, that the earlier the intervention, the more successful. That intervention can change how a dyslexic reads, writes, and learns, and it seems that it is possible that it can even change the makeup of the brain itself.

Says Bruce Pennington, "We are in the middle of a scientific revolution in understanding how the brain works." Leaders of this revolution, like most others before it, have found a great deal of government money available to buy their weapons. The 1990s were designated the Decade of the Brain, and during that time, the NIH doled out funds to nineteen universities and centers from coast to coast to establish a Learning Disabilities Research Network. Some of these studies began quite a bit before the decade designation -- in fact, Haskins Lab, where Isabelle Liberman did her studies, was the first to receive NIH funding, as far back as 1965 -- but the extra attention certainly didn't hurt. Harvard has received money; so has Yale, Johns Hopkins, Florida State, Denver, Boystown, and the University of California at Irvine, among others. G. Reid Lyon, blessed with brains, energy, and a fabulous sense of humor, is the research director who oversees this work. Lyon is also iconoclastic and passionate about what he does, and he is a born showman, holding audiences rapt and then startling them with statements like "Whole language sucks for dyslexics" before darting behind a podium, and "That's Al D'Amato's brain thinking as hard as it can," when describing a slide of a brain showing absolutely no activity.

Above all, though, Lyon is dedicated to scientific rigor, to establishing a science of education. What is discovered in one lab must be solid enough to be created anew in another setting. Says he, "If you don't have generalization and replication, you have belief, not science." Lyon also describes the NIH's job as "knocking down theories, not supporting them." The research initiative of the National Institute for Child Health and Development, part of the NIH, says Lyon, is to uncover which methodologies or combinations of methodologies, which developmental level, which stages of reading, and which combinations of setting have the greatest impact, and for how long and for what reasons. He goes on to say that NIH-funded studies have shown that early language disorders in children are highly predictive of reading and writing difficulties, and that early intervention is extremely important. So important, says Lyon, that "if you're not given informed help before the third grade, you're in trouble."

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Nature and nurture combine their effect before a child is born, as well. Sometimes reading and learning problems are the result of environmental damage the fetus has sustained; cigarettes, lead, alcohol, drugs, disease can all create problems that are much more difficult to deal with than dyslexia. The first student I ever worked with, at the clinic at Teachers College while I was doing my graduate work, was a victim of fetal alcohol syndrome. He was severely impaired, and the kind of intervention that is appropriate for dyslexics did not help him much.

Paul was nine years old; he could read very little and write less, and he had very little stamina or attentional capability. He also had the distinctive flatness in his face that distinguishes those who have been damaged by their mother's drinking. He was sweet and sensitive; he was painfully aware of his lacks, and in the two years I knew him, he talked more than once about being so tired of disappointing people all the time that he wanted to die. Learning anything was exceedingly difficult for him, retaining it was even harder, and he was emotionally very fragile as well. He wrote his name, first and last, completely backward, and if we were walking down the hall and I asked him to turn left, he invariably turned right. Once I took him to a New York Knicks basketball game, and he got sick in the cab; he couldn't stand the motion. He was an adopted child; I found out that the much older woman who was his mother had been his baby-sitter. When he was three months old, the woman who had given birth to him dropped him at the sitter's one day and never picked him up.

A couple of years after I taught him, I supervised another graduate student who had become his tutor. She was, as I had been, beside herself most of the time because she felt she could do so little to help Paul. Once she called me in tears because when she asked him what he wanted to do when he grew up, he replied that he really didn't know and that he thought he would probably be out on the street, selling drugs. At the end of that school year, Paul's time at the Teachers College clinic was up; he had to leave to make space for a student who had been on the waiting list for some time. Where he is now I don't know.

Acquired dyslexia, or alexia, is another kind of damage, generally from accidents or strokes or illness; it usually responds quite well to appropriate intervention. Actually, a great deal of what works for dyslexia works also for alexia -- carefully thought-out, very direct, multisensory teaching. It feels like a mantra, I say it so often, but there it is. The late A. H. Raskin was the national labor correspondent of The New York Times for more than forty years, and the deputy editor of the editorial page of the Times for another fourteen, until he retired in 1976. In September of 1992, Mr. Raskin described eloquently on the Op-Ed page of the Times his struggles with processing language caused by a stroke he had suffered two years before.

...I was forced to remain silent and could not follow either verbal or written commands. Words sounded to me like jargon, as though the people around me spoke a foreign tongue. I could neither comprehend nor use language. It is difficult to convey the depth of my emotional solitude....I now had a new self, a person who no longer could use words with mastery. Privately I could do nothing but cry. With the tears came feelings of anxiety and depression....Reading was just as difficult. The printed word at first resembled hieroglyphics. Later, individual words became recognizable and took on meaning, but I could not decipher a printed statement. Looking at a group of words was overwhelming. It was as though the words were catapulting off the page, and I could not make sense of their significance....I felt mournful and frightened, then tense, anxious and full of rage....Initially, when I tried to write my name, I just scribbled....Spelling was no longer automatic.... Gradually I combined words in order to form sentences, although I tended to omit the articles and prepositions. Verb tense was yet another chore.

The octogenarian Mr. Raskin learned to read and write again the same way young developmental dyslexics do. He was taught the basic structure of the English language; then he graduated to learning about syllables -- until, step by step, he regained the ability to communicate his thoughts vividly in speech and, as the above so clearly shows, in writing.

According to Kate Moody of the University of Texas Medical Branch in Galveston, there is another kind of acquired dyslexia. What she describes, with a bit of poetic license, is not the result of stroke or degenerative diseases; it just looks the same. Difficulty with words is at its heart, though. Moody (and others) posit that the same brain plasticity and ability to change that offer so much promise are also very much endangered by not receiving the right kind of stimulation, particularly in the language areas of the brain, which, as Bruce Pennington pointed out, develop later and are therefore very susceptible to nurture. The cause of this paucity of correct stimulation for the brain is definitely environmental, too, but it has nothing to do with chemicals of any sort. The culprit Moody points to is television. Studies she quotes have found that heavy television viewers are less adept at reading than those who watched moderately or not at all -- and dyslexics were not included in these studies. Comments Moody, "Larger and larger numbers of children who were born with the equipment to read are becoming less and less able to read." She continues, "Since the 1970s children have spent more time watching television than doing anything else. The eyes and hands and brain all play a big role in learning. TV uses none of the above."

It's scary, but it makes great sense. If a child is born with all the neurons he needs and if that child spends the first decade of his life sculpting a brain by shedding neurons the way an artist sheds the extra marble to create a statue, it seems only logical that all those neurons that are waiting for the kind of stimulation that will make them build networks to be used for reading and writing are being sloughed off in favor of the neurons that have nothing to do with creating or translating language. Certainly print and TV ask very different things of us, and we use very different skills in dealing with each. Moody describes the differences as follows:

NATURE OF PRINT
Linear
Sequence is important
Stable -- stays on page
Phonological awareness is necessary
Mind creates pictures
Saccadic eye movement (from left to right) is required
Pace is reader's own
Left-brain activity is amplified

NATURE OF TELEVISION
Nonlinear
Sequence is unimportant
Unstable
Phonological awareness is unnecessary
Pictures are ready-made
Saccadic eye movement is not used
Pace is rapid
Right-brain activity is amplified

It used to be that fussy children were read to, or sung to, or cooed at and coaxed with loving words from whoever was caring for them. Now, more often than not, restless, cranky, attention-demanding young ones are often in the care of parents and others who are overworked, overstressed, overbusy, and so are plunked in front of that great attention diverter and pacifier, television -- which might just be lying in wait to destroy the neurons those children need to become good communicators, patient observers, voracious readers. And in our own living rooms. Think about it.

There is another kind of poor reader who has all the building materials he needs but who seems unable to learn to deal with text. These students often start off well, then soon they are not reading on grade level: they are unable to express themselves in writing. No one can figure it out. Typically the children receive the blame for their decline: they are not working hard enough, they are fooling around instead of paying attention, etc., etc. -- the usual litany. In fact, it is the education system that is to blame. These are the children who are at the heart of the debate over whether the structure of the language should be directly, explicitly taught, or whether the children should be expected to figure it out for themselves. These children are victims of another sort of environmental hazard: They have received inadequate instruction. They have not been taught what they need to know to learn to read; they are described as "curriculum disabled" by those who see them applying to schools for the learning disabled. I taught just such a student back in the Teachers College clinic.

Carlos was fourteen, from Texas. He was so bright and had shown such promise when he started school that he was included in an experimental reading program that bathed the children in language, surrounded them with books, and believed wholeheartedly that osmosis would do the rest. Lucky Carlos. Osmosis proved to be a poor teacher. P. S.: English was not Carlos's first language; Spanish was, which complicated the situation even more. Carlos seemed to enjoy all of that bathing in English and all of that exposure. At least, he enjoyed it until the day he was supposed to magically read. He couldn't. He tried, but it just wasn't working. What Carlos needed was proper, organized instruction in the rules of the English language, in phonics, in sight words, in grammar, in syntax. But such instruction was not the style in his program. Soon this cheerful, achieving boy became less and less able to do his work.

First he was taken out of the experimental program that was for the higher-performing students and put back in the "regular" class. Then he fell to the bottom of that class. By fourth grade, Carlos was in special education and considered not very bright. His slide was quick and disastrous. He lost all interest in schoolwork; he thought he couldn't do it, and everyone agreed. Elementary school took away all his expectations of success and all his confidence in himself, as well as all his family's pride in his abilities. He didn't learn to read, he didn't learn to write, and his teachers blamed him. It was all his fault. Sound familiar? Sound like Valerie and Rebecca and probably several people you know? It sure does. It sounds just like what has happened to so many dyslexic, misunderstood students. Only Carlos was not dyslexic, even though he was certainly misunderstood. Still, his academic life continued to get worse and worse as he slid farther and farther away from his hopeful beginnings. From gifted and talented to special ed. in only a few years, and plummeting. His teachers wondered how they could have been so wrong about him in the beginning; his mother was dismayed; Carlos was a wreck. His parents divorced, and he and his mother moved east. By the time I met him, he was in junior high school in New York, depressed, overweight, so used to failure in school and in life that he was utterly convinced that the only thing he would ever be good at was skateboarding.

Over the course of just a few months, I tested him and I tutored him. It was clear he was bright; it was also clear that he wanted desperately to be able to show how well he could think, but he didn't have the tools to do so. At our first session, I asked him if he knew the short vowel sounds. He said, "The what?" And we were off. I taught Carlos how the English language works; I taught him about vowels and consonants; I taught him about syllables; I taught him about sentences and about syntax, and how to go back and check whether he was right about what he was reading. Carlos was a sponge; he was so thirsty from his years of drought that he drank up everything I could give him, lesson after lesson; the only thing that would quench his thirst was learning the skills that would free him from his prison of ineptitude and what he and everyone else thought was stupidity. Each session was more exciting than the one before it, for Carlos and for me. He made progress faster even than he had bottomed out.

The most fun was that all the phonic rules and elements that I taught him made immediate sense to him. He didn't have to struggle to learn them and remember them and find the right place for them, as dyslexics must; all he needed was to be taught, and osmosis is a poor substitute for teaching. Our time together was limited because Carlos was moving back to Texas, but he made incredible improvement over the weeks we worked together; he became energized and enthusiastic about learning and about his growth. He even sat up straighter, which is really no surprise. He was getting his pride back. I did not stay in touch with him after he left, but his mother had vowed to ensure he continued the work we had started until he no longer needed it. I'm sure she did, too. As a going-away present, I gave Carlos a copy of the book he most wanted to read and now could: Brave New World.

There is one more thing dyslexia is: big business. There has been an enormous growth in the number of identified dyslexics over the past decade or two, and an industry has sprung up to deal with them. I am often asked why there are so many now. People are skeptical. They seem to wonder whether there isn't some sort of scam that lets people think or claim they're dyslexic when really what they are is...who knows. I can't support the following statement with numbers, but I truly believe that no one would be interested in faking dyslexia; too much pain comes with the designation. There certainly could be overdiagnosis, or incorrect diagnosis, but I doubt that there is much. I think the reasons for the substantial growth in numbers are twofold: First, we know more now; we know what dyslexia is, how to diagnose it, and what to do about it. So we can spot it more readily. Second, there have been laws in effect for somewhat over two decades that insist that children be sought out, diagnosed, and treated. So of course the numbers have skyrocketed. Many of those students who were thought to be just a little stupid now can be given the chance to learn that they deserve. We humans have not been reading for all that long, but as long as we have, there have been dyslexics. Now they can find help.

Copyright © 1998 by Daphne Hurford

Table of Contents

Contents

Introduction

Part One: The Many Faces of Dyslexia

1. Dyslexia Doesn't Discriminate

From Einstein to Churchill to the Boy Next Door

2. Dyslexia Defined

Pinning Down the Elusive Elements

3. Dyslexia Across the Age Range

Leaving or Staying in the LD Closet

4. Living the Life of the Dyslexic

Complications Outside the Classroom

Part Two: Diagnosis and Treatment

5. Detecting and Diagnosing Dyslexia

The Key to Breaking the Chains

6. Education and Dyslexia

The Role of the School

7. Remediating Dyslexia

The Joy of Discovery

8. Technology and the Dyslexic

Computers Can Help

9. Colleges and Careers for Dyslexics

Options and Futures

10. Resources

Organizations, Schools, Publishers

Bibliography and Other Sources

Index

Editorial Reviews

Harold S. Koplewicz, M.D. professor and vice chairman of Psychiatry, and director of the Child Study Center, New York University School of Medicine; and author of It's Nobody's Fault Finally, an easy-to-read and scientifically based book on dyslexia. Daphne M. Hurford has written a comprehensive guide for the evaluation and treatment of dyslexia. For the millions of Americans suffering from dyslexia, this volume is a necessary addition to their family library.

From the Publisher

Former Life magazine journalist Hurford has written the best comprehensive book about dyslexia intended for a general audience. Told with consummate respect for the intelligence and perseverance of dyslexics, Hurford's work could and should change lives. She begins with the comforting reality that many successful, important people share this condition, among them Einstein, Churchill, Yeats and Nelson Rockefeller. Her careful definition accurately reflects the term's vague etymology (dys, difficult, and lexis, word): "difficulty reading words, writing words, remembering words, and sometimes even pronouncing words." Hurford helps explain how this often misunderstood condition that affects 15% of Americans can show itself in widely varying ways in dyslexics' reading, writing and day-to-day life. "According to the Dyslexia Association," Hurford reports, "dyslexia is `neurologically based'" and "the brain... needs to be trained" in order for the dyslexic to effectively function in the realm of the printed word. Now a learning specialist with a private practice in New York City, the author delineates the school's role in helping dyslexics. Her explanations about diagnosis, remediation and available services will be of enormous help to parents, students, and dyslexics of all ages as they work with this condition. Hurford draws on both clear interpretations of current research and on dozens of case studies that prove that the frustration of dyslexia can be greatly reduced. This is concise, comprehensive and informative reading. (Aug.)

Publishers Weekly - Publisher's Weekly