For Deborah Shipman and Debbie Daniels, the trouble came without warning. As the mothers of bright, verbal preschoolers, they never dreamed what was ahead. But in kindergarten, Kyle Shipman had difficulty recognizing the letters of the alphabet; in first grade Alex Matteson, Daniels' son, just couldn't seem to learn to read. Neither the mothers nor the boys' teachers knew what to do.
Kyle and Alex (left and right in photo above) were demonstrating the classic pattern of children with learning disabilities. They had seemed to develop normally—both physically and mentally—until they entered school. But when their reading skills failed to develop, their parents’ world turned topsy-turvy.
“I was devastated to find out that my wonderful, perfect child wasn’t,” Daniels remembers. “I was afraid for him. I wondered what this would mean for his life.”
Daniels’ reaction is typical. Parents of children with learning disabilities are first surprised by a problem that comes out of the blue, then confused because they don’t know what to do and finally frustrated that efforts to help their children often fail.
The frustration builds when parents ask for help, but meet resistance. School officials told Kyle’s mom they couldn’t test him until second grade. Daniels ran into “tremendous resistance” when she asked that Alex be tested. “He’s a boy and boys mature later,” school officials argued. “Let’s wait until third grade.”
The schools weren’t being uncaring or irresponsible. They were following standard procedure that grows out of the controversy that has surrounded learning disabilities ever since the term was first used in the 1960s. At that time, parents of children like Kyle and Alex insisted that what was wrong with their children be recognized as something more than “stupidity” or a “bad attitude,” and they demanded that schools do something to help them. They had better luck with the second goal than with the first; when Congress passed a law in 1975 requiring schools to educate children with disabilities, “learning disability” was included as a category.
Despite the law, little was known about learning disabilities, except that some children who didn’t have an overall cognitive deficit did have specific learning problems-most often in reading and writing, but sometimes in listening, speaking or math. Lawmakers and educators grouped a variety of problems under the same term, “learning disability.” And because no one knew the reasons for these problems, there was no way to test specifically for them. So schools simply tested a child’s general aptitude with an IQ test and compared it to his or her achievement. A gap meant a diagnosis of learning disability.
Unfortunately, such a gap can’t be detected as soon as a child enters school. The school must wait until a psychologist can get a valid IQ score and the child has compiled an achievement record. Meanwhile, the typical child with a learning disability will have spent two to three years frustrated at not being able to read.
That is completely unacceptable to Virginia Berninger, a professor of educational psychology who has been studying reading and writing problems for more than a decade. “This is a treatable condition,” she declares, “and the earlier we intervene the better.”
School policies, however, have not kept up with the research, despite a major push from the federal government. The 1975 law resulted in mounting numbers of children labeled “learning disabled” and therefore requiring special services in the schools. Alarmed, Congress turned to the National Institute of Child Health and Human Development and demanded answers. That agency launched a major research program in 1985.
Berninger received her first grant from the institute-to study writing problems-in 1989. Now, thanks to another institute grant, she is the principal investigator of a UW research center, launched in 1995 and focusing on specific reading disorder, or dyslexia. Kyle and Alex are among dozens of children who are participating in studies at the center, one of five learning disabilities centers supported by the federal agency.
Researchers have made great strides learning about various disorders since 1985. The condition stems from processing problems in the brain, these researchers have found, and there are specific ways of diagnosing the disorders. For example, in dyslexia, there are three “markers” that children may show:
A child who struggles with learning to recognize written words and has any one of these markers is considered dyslexic; Kyle and Alex have all three. Using a series of tests authored by Berninger, school psychologists could have uncovered their problems in first grade in as little as 15 or 20 minutes.Given the obvious advantages of early diagnosis and intervention, why don’t school use tests like these instead of relying only on the IQ-achievement gap? Part of the problem is lack of knowledge, Berninger says. Researchers and educators often don’t move in the same circles, so cutting-edge techniques may not make it into the schools. In an effort to bridge that gap, she’s just written a book, Process Assessment of the Learner: Guides for Intervention, that was published by PsychCorp in October and is intended for teachers and school psychologists (The publisher’s toll-free number is 1-800-211-8378.).
Researchers have long suspected that learning disabilities are inherited, though it isn't always obvious.
Scientists, meanwhile, are collaborating across disciplines to gain a better understanding of learning disabilities. At the UW, Wendy Raskind, a physician and associate professor of medicine, is heading up a genetics project, while Todd Richards, a physicist and professor of radiology, is directing a brain imaging project.
Researchers have long suspected that learning disabilities are inherited, though it isn’t always obvious. In Alex’s case, for example, it wasn’t until his problems surfaced that his father began to talk about his own difficulty in learning to read. Like many adults, David Matteson had learned to compensate and went on to academic success, so that his disability couldn’t be detected in tests researchers have developed. But when the entire Daniels/Matteson family was tested, Alex’s older sister was found to have a mild disability. Kyle’s older brother was also found to be mildly dyslexic.
The families of Alex and Kyle are among 102 that have taken a battery of language skill tests in the UW project. Researchers first identified a child with dyslexia, then tested the child’s immediate family. If one of the parents either tested for or recounted a history of reading problems, they tried to also test that person’s parents and siblings.
After three years of work, the UW project is just beginning the modeling phase. Using complicated statistical programs, researchers plug their data into possible models of transmission for the disorder to see which ones provide the best fit. Once they get a better picture of how dyslexia is passed down, they’ll be able to zero in on genes that may cause it.
“It’s almost certainly a number of genes interacting with each other, so getting an answer here is going to be complex,” Raskind says.
Even if they are able to isolate the offending genes, the aim of the research is emphatically not gene therapy. “Dyslexia is a disorder only because in our society you have to read to succeed,” Raskind explains. “The same genes that cause it may also confer advantages that we don’t recognize, so we’re not going to ‘fix’ them.”
Instead, she and Berninger hope the genetics will make possible a blood test that would identify children at high risk to develop dyslexia. Such a test would qualify a child for early intervention services instead of forcing him or her to fail for several years before help arrives.
A blood test may not be the only evidence of dyslexia that comes out of the research. Alex and Kyle were among eight children with dyslexia who had their brains imaged while they were engaged in language tasks related to reading. Using a new technique developed at the UW called proton echo-planar spectroscopy imaging (PEPSI), the boys were placed in a magnetic resonance scanner running software that measures areas of brain activation.
When images of their brains were compared to those of children without dyslexia, researchers found that there was more brain activation in the dyslexics during the same language tasks tapping two of the markers for dyslexia. “It appeared that they had used more metabolic energy to do the same task,” said Richards, who heads the imaging project.
Researchers repeated the imaging tests after the children with dyslexia completed tutoring, to see if there was any change in their brain functioning. They are currently analyzing the results.
Despite the new research, the intervention a child with dyslexia requires is still educational, not medical. “We’ve learned that children with dyslexia require direct, explicit instruction in what we call the alphabet principle,” says Berninger, who heads the treatment project. “And we’ve learned that there is an optimum way of delivering this instruction that emphasizes the connections between oral and written language.”
For a child without dyslexia, a word might be stored in memory after a few repetitions; for kids like Kyle and Alex, numerous repetitions are necessary.
Briefly stated, the alphabet principle means that there is a systematic connection between particular sounds and letters or letter groups. Because all children come to school having mastered an oral language, reading and writing is a matter of translating what is basically auditory into a visual medium. This is phonics, but with two additions. First, it is not enough to teach the sounds of individual letters. In English, many of the basic sounds are formed by two-letter groups, so children learning to read need to learn these groups as units. And second, phonics is often taught through the use of rules: “When two vowels go walking, the first does the talking,” or “When you see a silent ‘e’ at the end of a word, that makes the vowel in the word say its name.” But research shows such verbalizations do little to fix the sound-letter connection in memory, and may even get in the way.
To address both problems, Berninger’s research group developed “talking letters.” Children are given a card that has the vowel sounds on one side and the consonant sounds on the other. Next to each letter or letter group is a picture of an object the word for which contains the target sound-a ring next to “ng,” a can of oil next to “oi,” and so forth. Using the card, children learn to connect the sound of a word they know with a letter or letter group; the expectation is that with practice, the connection will become automatic.
Given Kyle and Alex’s difficulties with written language, their alphabet principle training cannot be a one-time thing. For a child without dyslexia, a word might be stored in memory after a few repetitions; for kids like Kyle and Alex, numerous repetitions are necessary.
“In our school systems we typically stop reading instruction after the primary grades,” Berninger says. “But children with dyslexia require a continuous reading program throughout the school years.”
Before he entered the study, Alex had had the benefit of such a program. Unwilling to accept his school’s request for a delay before testing him, his parents had him tested privately. When he was diagnosed with dyslexia, they placed him in a private school for children with learning problems. Kyle was not as fortunate. Shipman is a single parent who couldn’t afford private testing or schools, so Kyle was tested when the school was willing to do it and placed in a reading program that, while well intentioned, simply didn’t serve his needs.
“He saw himself as incapable because he wasn’t learning to read,” Shipman says of that time. “His self-esteem plummeted.”
It is just such a loss of self-esteem that Berninger is trying to prevent. In her extensive work in schools, she does not test students for dyslexia. Instead, she simply chooses those doing poorly in reading and works on the alphabet principle with them in special, small-group tutorials. Using this method, about half the poor readers can be brought up to grade level in 24, 20-minute sessions, proving that the teaching method also works for children who are not dyslexic.
“If we used everything we know about the structure of language in teaching, and did it for everyone, starting in kindergarten, we could eliminate the vast majority of reading and writing problems,” she says.
Mass adoption of new teaching methods doesn’t happen very often, however. Berninger’s funding agency has been studying learning disabilities for 12 years and has managed only modest changes in the educational systems of a few states. That situation has led Berninger and her colleagues to set up a teacher training project as part of the research center. Headed by Education Professor Deborah McCutchen, the project aims to disseminate research results to teachers. Each summer since 1995, classroom teachers have attended a two-week summer institute during which they get a crash course in the structure of language and create lesson plans for teaching the alphabet principle.
During the school year, institute staff visit the participating teachers in their classrooms, and the teachers also return three times for follow-up instruction and discussion. The institute is already showing results. The students of participating teachers test higher in basic reading skills than students of teachers who are waiting to attend the following summer.
That’s the bottom line for researchers-to help the children who struggle with reading and writing. Alex and Kyle are both in sixth grade this year and in middle school. Alex attends regular classes and continues with private tutoring; Kyle is in some special classes. Both are comprehending text at grade level, though they still struggle to recognize and spell words out of context. Their mothers know their path in school isn’t likely to be smooth, but they are enthusiastic about the progress made.
Daniels praises the testing that she says “took a microscope to Alex’s problems,” making precise intervention possible. And Shipman says Kyle responded to the UW program as he had to nothing else. Both mothers praise Berninger for going the extra mile for their children-even attending parent teacher conferences and writing letters to the school district when needed.
“Her dedication is amazing,” Shipman says. “When you as a parent can’t do something for your child and someone comes along and offers that to you free of charge, well, there is no greater gift than that.”