Getting a Handle on Dyslexia
A new understanding of its causes is helping to deliver effective treatments

BY GABRIELLE BAUER

Little Curtis Van Meenen seemed to catch on to reading and writing, though he had a hard time remembering the spelling of simple words such as “this” or “said,” even by the end of Grade 2. Then Grade 3 brought fresh troubles. “It was all he could do to decode the words,” recalls his mother, Carolyn, of Langley, B.C. “There was no energy left for comprehension.”

While Curtis’s Grade 3 teacher suspected something was wrong, she told Carolyn he wasn’t doing poorly enough to qualify for special services. Frustrated, Carolyn went home and hopped on the Internet, where she stumbled on a survey of dyslexia symptoms. “Curtis had 32 of the 37 symptoms listed,” she says. A private consultation confirmed Carolyn’s suspicion: Curtis had dyslexia.

Canada has many Curtises—dyslexic children who slip through the diagnostic cracks until Grade 3 or even later, at which point their reluctance to read has often hardened into avid distaste and their self-esteem has hit bottom.

“It’s a weak link in the education-al system,” says Barbara Young, a Toronto-based educational researcher and founder of the Arrowsmith instruction method for children with dyslexia and other learning disabilities. “Many schools still require that a child fall behind by two years before diagnosing a reading disability. We lose valuable time if we wait that long before offering help.”

By the same token, many parents still harbour misconceptions that may lead them to ignore early warning signs of dyslexia—or conversely, to worry needlessly. Some parents may breathe a sigh of relief when their child begins identifying words and reading sentences, unaware that milder forms of dyslexia can hide from view until the higher grades. Other parents hit the panic button when they spot a backward “R” or “3” in their young child’s writing, not knowing that letter reversals represent an almost universal developmental stage.

The gap between scientific knowledge about dyslexia and the public’s understanding of the condition is what led Dr. Sally Shaywitz, a Yale University neuroscientist and one of the world’s leading authorities on dyslexia, to write her book Overcoming Dyslexia. “We now have a scientific basis for diagnosing and remediating dyslexia,” she says. “Today, every child can become a better reader.”

Dyslexia exists in all languages and cultures. While researchers don’t agree on just how common it is, many place their bets in the five-to-15 per-cent range. “It depends on where you draw the line,” notes Linda Siegel, a professor of educational psychol-ogy at the University of British Columbia. Siegel bases her own estimate —four to five percent—on her ongoing study of 1,000 North Vancouver schoolchildren.

Having followed a group of 445 Connecticut children for the past 20 years, Shaywitz cites a much bigger figure—one in five. Could this really be true? “If you define dyslexia as reading below age or overall level of ability, then the figure applies,” she maintains, adding that dyslexia does not constitute a discrete entity but falls at one end of a spectrum, much like obesity or hypertension.

Before the results of long-term follow-up studies rolled in, some learning specialists wondered whether lack of exposure to words might explain certain cases of dyslexia. It’s true that a low socioeconomic background puts young schoolchildren at a linguistic disadvantage. “Our research has uncovered a strong link between socioeconomic background and literacy skills in kindergarten children,” says Siegel. But here’s the surprising part: By the end of Grade 3, “the relationship evaporates. Kids with persistent reading difficulties are just as likely to come from advantaged backgrounds as from disadvantaged ones.”

The fact is: Dyslexia occurs at all levels of intelligence. Many high-IQ dyslexic children first get pegged as lazy or unmotivated, says Nancy Cohen, a professor of psychiatry at the University of Toronto and director of research at the Hincks-Dellcrest Centre, a children’s mental-health centre. “Teachers can’t understand how such a bright child can be having so much trouble,” she says.

By the same token, Cohen says, as many as two thirds of children referred to her for behavioural problems such as attention deficit disorder (ADD) actually have a learning disability. Although ADD and dyslexia often occur together, this is not always the case. Children can also become inattentive when they feel frustrated and discouraged about their inability to read and learn.

The “bored and restless” syndrome may explain why boys receive a diagnosis of dyslexia far more often than girls. “Boys tend to be more impulsive and overly active in the classroom than girls, so they are more likely to be referred for assessment, which is when reading problems are often identified,” says Shaywitz. “But rigorous studies of reading difficulties show that the genders do not differ significantly.”

In most cases, dyslexia stems from a weakness in processing sounds and sound combinations (called “phonological processing”). “Kids with dyslexia take longer to understand that words come apart into individual sounds and to manipulate these sounds,” says Rauno Parrila, an educational psychology professor at the University of Alberta. An instruction to “say the word ‘sink’ without the s,” for example, could be a real stumper for a dyslexic child.

When people with dyslexia struggle to read, they’re doing battle with their own brains—brains that are simply not “wired” for reading. A growing body of evidence pins dyslexia on a glitch in brain circuitry that makes reading extremely difficult.

Using functional magnetic resonance imaging, Shaywitz and her colleagues have identified three areas on the left side of the brain involved in reading—two in the back of the brain and one in the front. When dyslexic children read, the areas in the back do not “activate” as they do in normal readers. “One of the areas that consistently fails to activate is the ‘word form’ region of the back of the brain, which is critical for reading fluency,” Shaywitz explains. “We finally have neurobiological proof of the reality of dyslexia.”

Which raises the question: What gives rise to the neurological glitch? As it turns out, one contributing factor is the genes that influence the parts of the brain involved in language, particularly how written letters are converted to speech sounds. Virginia Berninger and Dr. Wendy Raskind, codirectors of the University of Washington multidisciplinary Learning Disabilities Centre in Seattle, are finding that genes play a role in how quickly and automatically readers can convert letters into speech. “People with weaknesses in this area tend to have family members with similar deficits,” explains Berninger.

A recent study of 96 Canadian families prone to dyslexia identified a disturbance in a gene at a specific region on chromosome 2 in many of these families, supporting the results of an earlier Norwegian study. And an analysis of dyslexia-prone American and British families has linked an area of chromosome 18 and of chromosome 6 to reading, phoneme-processing and spelling problems.

How might these genetic aberrations lead to dyslexia? Since DNA makes proteins, and these proteins orchestrate the structure and function of the human body, “defects in specific genes could presumably lead to abnormalities in brain structure or to a dysfunction in the neurotransmitters that facilitate reading,” says Shaywitz.

Lack of oxygen at birth, another purported cause of dyslexia, “probably accounts for only a very, very small percentage of cases,” she says. “By and large it seems to be genetic.”

That being said, Berninger and Raskind caution that although there is a genetic basis for difficulty in changing letters in unknown words into speech, the most effective treatment is educational not medical. Explicit instruction that shows readers how alphabet letters are related to speech has been shown to be effective.

The scientific advances have strengthened the case for early intervention and led educators to appreciate the harm wrought on children who had to “wait ’til eight” before getting a diagnosis. Today some kindergartens run screening tests that identify high-risk children and give them early learning support.

“If you wait until the child is past eight, not only are the neural pathways more entrenched but so are the habits,” says Siegel. “You’re dealing with kids who’ve learned to resist reading with every fibre of their being. The message we’re trying to get out to parents and teachers is not to wait.”

And what if your child’s school is making you wait? It’s your right to have your child evaluated if there’s good reason to suspect a problem, notes Siegel. If your child’s school continues to give you the runaround or if your district’s waiting list is too long, you can have your child tested privately by a clinical psychologist or specialized assessment centre. The Learning Disabilities Association of Canada (LDAC) may be able to provide you with resources. Be warned, though, that a private assessment can cost between $1,000 and $2,000.

One mother who went this route was Tamara Elliott of Toronto. She grew concerned when her son, Sean, still didn’t “get” reading by the middle of Grade 1. A battery of tests found Sean to have dyslexia compounded by visual and auditory discrimination problems—along with a superior vocabulary and a probing, creative mind. Within two weeks, Elliott had hired a tutor with expertise in learning disabilities. “She taught him phonics like there’s no tomorrow,” Elliott says. Now ten, Sean is tackling Harry Potter on his own. Some of his former classmates, meanwhile, “were identified much later and still can’t read properly in Grade 4.”

On the flip side, you may think you can confidently rule out dyslexia if your child keeps up with her peers in the primary grades. Not so fast, says Shaywitz. “Many kids hide their reading deficits with a good memory, so the deficits don’t become apparent until the higher grades, when they’re expected to read more complicated words,” she says. It’s then that children may fail to identify these new words accurately or to read them fluently, a pattern Barbara Young has observed in some of her students and remembers from her own dyslexic childhood. “I had to read a word over and over to click into its meaning,” she recalls.

How do you spot this “late-blooming dyslexia” before the comprehension problems surface? “One clue might be if your child has trouble understanding age-appropriate books that are read to her,” says Young. Another, more general clue: “If your child learns easily in some areas and with great difficulty in others, it’s often an indication that something is wrong.”

Once you’ve identified a reading problem, the next step is to help your child overcome it. With so many “miracle” reading programs proliferating on the Internet, parents may wonder where to turn. According to Maureen Lovett, director of the Learning Disabilities Research Program at the Hospital for Sick Children in Toronto, “Programs that merely teach children the shape of words don’t give them the skills they need to become independent readers. The most successful programs focus on strengthening the brain’s aptitude to link letters and groups of letters to sounds.”

If your child is receiving reading help, “make sure his reading program has a strong phonemic-awareness component and teaches your child strategies for figuring out unfamiliar words,” Lovett advises. (Your local LDAC chapter may be able to recommend a program or tutor for your child.)

In North Vancouver, educational psychology professor Linda Siegel has observed the positive effects of early intervention in the Firm Foundations program, which allows teachers to identify children who may be at risk for reading difficulties. With its emphasis on developing phonological awareness skills using activities such as syllable-count board games and compound-word and rhyme puzzles, this program has enabled a majority of these children to meet with reading success.

Shaywitz’s widely publicized studies have shown that effective intervention does more than just stimulate existing neural pathways—it actually rewires the brain. “Targeted reading instruction boosts the dyslexic brain’s activity in the crucial word-form area,” says Shaywitz. That this improvement persists for at least a year suggests that “the right intervention may help the dyslexic brain lay down the type of reading circuitry found in naturally fluent readers. It’s a very exciting time in dyslexia research.”

For further information call the Learning Disabilities Association of Canada at 613-238-5721 or visit their web site at www.ldac-taac.ca.