Sixth-grader Josh Thibeau has been struggling to read for as long as he can remember. He has yet to complete a single Harry Potter book, his personal goal.
When he was in first grade, Josh’s parents enrolled him in a research study at Boston Children’s Hospital investigating the genetics of dyslexia. Since then, Josh has completed regular MRI scans of his brain. Initially, it seemed daunting.
“When we first started, I’m like, ‘Oh no, you’re sending me to like some strange, like, science lab where I’m going to be injected with needles and it’s going to hurt,’ I’m like, ‘I’m never going to see my family again,’ ” says Josh, who lives in West Newbury, Mass.
Josh and his three biological siblings all have dyslexia to varying degrees. Pretty much every day he confronts the reality that his brain works differently than his peers’. He’s even shared scans of his brain with classmates to try to show those differences. Some kids still don’t get it.
“There was a student that said, ‘Are you stupid?’ Because my brain was working in a different way,” Josh says. “And I’m just like, ‘No, I am not stupid…I’m just dyslexic.’ ”
THE PRE-READING BRAIN
On average, one or two kids in every U.S. classroom has dyslexia, a brain-based learning disability that often runs in families and makes reading difficult, sometimes painfully so.
Compared to other neurodevelopmental disorders like ADHD or autism, research into dyslexia has advanced further, experts say. That’s partly because dyslexia presents itself around a specific behavior: reading — which, as they say, is fundamental.
Now, new research shows it’s possible to pick up some of the signs of dyslexia in the brain even before kids learn to read. And this earlier identification may start to substantially influence how parents, educators and clinicians tackle the disorder.
Until recently (and sometimes even today) kids who struggled to read were thought to lack motivation or smarts. Now it’s clear that’s not true: Dyslexia stems from physiological differences in the brain circuitry. Those differences can make it harder, and less efficient, for children to process the tiny components of language, called phonemes.
And it’s much more complicated than just flipping your “b’s and “d’s.” To read, children need to learn to map the sounds of spoken language — the “KUH”, the “AH”, the “TUH” — to their corresponding letters. And then they must grasp how those letter symbols, the “C” “A” and “T”, create words with meaning. Kids with dyslexia have far more trouble mastering these steps automatically.
For these children, the path toward reading is often marked by struggle, anxiety and feelings of inadequacy. In general, a diagnosis of dyslexia usually means that a child has experienced multiple failures at school.
But collaborations currently underway between neuroscientists at MIT and Children’s Hospital may mark a fundamental shift in addressing dyslexia, and might someday eliminate the anguish of repeated failure. In preliminary findings, researchers report that brain measures taken in kindergartners — even before the kids can read — can “significantly” improve predictions of how well, or poorly, the children can master reading later on.
PINPOINTING THE WHITE MATTER CULPRIT
Using cutting-edge MRI technology, the researchers are able to pinpoint a specific neural pathway, a white matter tract in the brain’s left hemisphere that appears to be related to dyslexia: It’s called the arcuate fasciculus.
“It’s an arch-shaped bundle of fibers that connects the frontal language areas of the brain to the areas in the temporal lobe that are important for language,” Elizabeth Norton, a neuroscientist at MIT’s McGovern Institute of Brain Research, explains.
In her lab, Norton shows me brain images from the NIH-funded kindergartner study, called READ (for Researching Early Attributes of Dyslexia).
“We see that in children who in kindergarten already have strong pre-reading scores, their arcuate fasciculus is both bigger and more well organized,” she says. On the other hand: “A child with a score of zero has a very small and not particularly organized arcuate fasciculus.”
She says we’re not quite ready to simply take a picture of your child’s brain and say “Aha, this kid is going to have dyslexia,” but we’re getting closer to that point.
Norton’s colleague, neuroscientist and assistant professor of pediatrics Nadine Gaab of Children’s Hospital, studies the brains of infants as young as 4 months old. She theorizes that even at birth, or shortly after, children’s brain structures can show signs of developing the disorder. Her hope is that, ultimately, the current research will trickle down to classrooms and help eliminate what she calls “the dyslexia paradox.”
“Several studies have suggested that intervention is most effective in kindergarten or first grade,” she says. “However, you have to have several years of reading failure before you can get a diagnosis of dyslexia — end of second grade, beginning of third grade. So we have this paradox.”
A YEAR TO LEARN THE WORD ‘THE’
Meghan Estrada, of Watertown, Mass., enrolled her son Tomas in the MIT study at age 6, after seeing him struggle with the basics of reading.
“When he was in kindergarten, you know, he was having some serious trouble,” she says. “It took him about a year to learn the word ‘the.’ I could see that he needed more help.”
Tomas, now 8, continues to experience difficulty with reading at the end of second grade. He requires more individualized support and intervention both at home and in the classroom. Now he’s being evaluated to determine if he does, indeed, have dyslexia.
MIT neuroscientist Professor John Gabrieli is one of the lead investigators of the study Tomas is participating in. “Maybe the most surprising aspect of the research so far is how clear a signal we see in the brains of children who are likely to go on to be poor readers,” Gabrieli says.
As part of the READ study, the kids wear colorful electrode caps to measure electrical activity in their brains; they complete a slew of cognitive, behavioral, memory and language tests; and get MRIs to evaluate both the structure and function of their brains. Researchers published findings based on the first 40 kids last summer in the Journal of Neuroscience; the plan is to follow all 186 kids in the study from kindergarten through second grade.
Gabrieli says if these early brain scans and other metrics prove to be predictive, new questions will arise.
“The bigger challenges for us now soon will be…to figure out what kind of interventions can be done in a 4-year-old or a 3-year-old that might put her or him on a different pathway altogether,” he says. “You know, can we have a child arrive at school who will be ready to read and not wait for failure at all but have intervened so early that the child never experiences that failure?”
One of the key goals of early identification, Gabrieli says, is to help kids avoid the stigma of dyslexia.
“The social downsides to late identification are quite severe,” he says. “These children who struggle to read are very aware of where they stand relative to their peers and this is their first major experience in school.”
Kelly Lowery, a Cambridge, Mass., pediatric neuropsychologist, treats kids who have anxiety related to their learning problems, mostly dyslexia. “I have students, you ask them to read and they start to cry — it’s a trauma experience,” she says.
A TOUGH THING TO HIDE
At the Carroll School in Lincoln, Mass., which specializes in language-based learning disabilities, eighth-graders Katelyn, Lily, Sarah and Aysha (their parents asked that their last names not be used) no longer have to keep their dyslexia a secret. But they recently told me about some of the strategies they used to employ — like pretending they couldn’t see words without their glasses, or asking friends to read for them.
Here’s what they said:
“Oh, I used to just like mumble over the word or say it really quietly — and pretend like I said it.”
“I would be chased down the hallway… it was mostly just one boy, and he’d be yelling at me, chasing me, and the teachers would just watch, and he’s like ‘You can’t read, like you should know how to read by now, you’re in seventh grade,’ but so, yeah, it was not very fun to go to school.”
“I remember that I used to pretend to be sick every day…and it was like most people say, ‘Oh, eighth grade, seventh grade, sixth grade, best years of your life.’ Not really. Like for some — a lot of dyslexic kids…it was torture.”
Dr. Eric Falke, director of cognitive interventions and research at the Carroll School, says children with dyslexia typically find alternate strategies to develop language skills. “Workarounds,” he says. “What they do is they use a lot of their intelligence to compensate for little bottlenecks, little quirky things about the way their brain processes information.”
But these workarounds aren’t always efficient.
“When you talk to an eighth-grader who struggled for nine years in a general educational environment…trying to figure out how to do something that was really difficult for her, [it] isn’t actually a good use of her time…” He adds: “If you could intervene earlier…a small intervention earlier on could potentially have a huge impact on a person’s life.”
So, he says, the Carroll School is ready to act on the new brain science now: “Here’s the bottom line: It’s like we’ve wanted to do this for many years, and we are ready to start a kindergarten if there’s enough interest from the community.”
NOT ALL SCHOOLS ON BOARD
So wouldn’t it be great if all kids — not just those lucky enough to attend a special private school — could get a diagnosis, and targeted intervention like one-on-one, daily tutoring and language-based reading support in small classes, much earlier? It seems like a no-brainer.
But Nadine Gaab, the other lead investigator on the kindergartner study, told me she was surprised to discover that not all schools were on board.
“Some of these schools were really open and happy that we want to come and test every incoming kindergartener,” Gaab says. “However we also had districts who said, ‘I’m sorry, but we don’t want you…because if MIT and Harvard diagnoses or identifies children at risk in kindergarten and we don’t have the resources to do anything about this, then parents will get really upset with us, and we would feel very guilty as well.’ ”
When this research becomes more definitive, it remains an open question whether more schools will take advantage of the brain science to test and offer intervention to kids much earlier. The researchers aren’t suggesting MRIs for every single kindergartner. But they say someday, if a child has a family history of dyslexia, and is showing early signs of reading trouble, a diagnostic brain scan may prove less costly than playing catch up after years of academic failure.
THE LEANING TOWER OF PISA – UPSIDE DOWN
Researchers already know early intervention can help many kids with dyslexia overcome some of their reading challenges. (Of course there’s a huge range of “dyslexia” and severity varies widely.)
One effective approach, called RAVE-O, was developed by Maryanne Wolf, director of the Center for Reading and Language Research at Tufts University. In her office, Wolf picks up a plastic model of a brain and explains that many children with dyslexia appear to be processing reading information in the right hemisphere, which may be less effective for language tasks, whereas typical readers rely on brain circuitry in the left hemisphere for these functions.
RAVE-O seeks to work around this, and help kids gain “automaticity” in all aspects of language. It’s a toolkit of strategies to make explicit the critical connections between sounds, symbols, syntax and meaning while also infusing some levity in the process. Kids learn about the “am” family, for instance, with pictures of jelly “jam,” a guitarist “jamming” and a traffic “jam.”
But for Wolf, this topic isn’t just academic, it’s personal: Her first son has dyslexia. She recalls a moment, when, as a junior high-schooler, he returned from a trip to Italy. “[A]nd he said, ‘Mom, I just want you to see what I just drew from memory.’ I looked. It was a perfect picture of the leaning tower of Pisa — upside down. And I said, ‘Why did you do that?’ And he said, ‘It’s just easier for me to draw that way.’ ”
Wolf’s son is now a successful artist and sometimes she wonders whether that’s despite his dyslexia — or because of it. Indeed, a national movement has emerged to spotlight the unique attributes of the dyslexic brain. Writers like Malcolm Gladwell and others have explored the “upside of dyslexia”, which can be marked by unusual problem-solving skills and outside-the-box thinking.
A few years back, for example, a widely reported study found that 35 percent of U.S. entrepreneurs identified themselves as dyslexic. Lists of celebrities with dyslexia, like Whoopi Goldberg and Henry Winkler, are becoming ubiquitous. And researchers, notably Sally and Bennett Shaywitz at the Yale Center For Dyslexia and Creativity, seek to emphasize the “sea of strengths” around dyslexia. (But even they write about the importance of accurate, precise diagnosis and early, evidence-based intervention.)
A MOTHER’S VIEW
Indeed, as a research subject — and a kid who’s changed schools many times to find teachers who “get” how he learns — Josh Thibeau, now at the Landmark School in Pride’s Crossing, Mass., has a unique appreciation of his own brain.
“It’s been described to me as a library, and now I think of it as a maze that’s like constantly changing,” he says, “and hopefully, it’ll be just one straight line, that’s where I need to go, that’s the place I need, that’s the information that I need to extract.”
Still, for Josh’s mother, Janet Thibeau, there remains a sadness knowing her kids will never share her love of reading, and there’s no getting around the severe challenges that come with a learning disability.
“You see kids struggle and not get their needs met and you see them turning into teenagers who make bad or unsafe choices,” she says.
Thibeau says she certainly appreciates the resilience that can come from overcoming adversity. But, she says, the prospect of earlier intervention for far more children with dyslexia is also encouraging.
“It gives the entire community… parents, schools, an opportunity to just keep kids away from seeing themselves as not smart or worthless, and seeing them really reaching amazing potential,” she says. “These are really bright kids who are capable of a lot once those underlying weaknesses are met.”
A note on terminology:
One problem that arises in talking about dyslexia is that not everyone uses the term “dyslexia,” and there is no one, standard definition. For instance, Elizabeth Norton of MIT explains: “The terms used to define reading difficulties are inconsistent. The state of Massachusetts and even federal education laws don’t use the term ‘dyslexia;’ instead, they use terms such as ‘specific learning disability in reading’ or ‘specific learning impairment.’ Some students may receive a more specific diagnosis of ‘dyslexia’ or “language-based learning disability” from an independent clinician. Further, the DSM 5 doesn’t include a definition of “dyslexia.”
The Carroll School uses “language-based reading disability” and also dyslexia. The NIH refers to “developmental reading disorder” and “dyslexia” interchangeably.
This post originally appeared on WBUR’s CommonHealth blog.