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The Couple Who Helped Decode Dyslexia

The Couple Who Helped Decode Dyslexia
By: New York Times Posted On: September 21, 2018 View: 20

The Couple Who Helped Decode Dyslexia

The Couple Who Helped Decode Dyslexia

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Sally and Bennett Shaywitz, co-directors of the Yale Center for Dyslexia and Creativity, have been conducting a study of people with dyslexia since 1983.CreditCreditChristopher Capozziello for The New York Times

NEW HAVEN, Conn. — By now, Sally and Bennett Shaywitz might have retired to a life of grandchild-doting and Mediterranean-cruising.

Instead, the Shaywitzes — experts in dyslexia at Yale who have been married to each other for 55 years — remain as focused as ever on a research endeavor they began 35 years ago.

Sally, 76, and Bennett, 79, both academic physicians, run the Yale Center for Dyslexia and Creativity. Their goal is not just to widen understanding of the scientific underpinnings of dyslexia, the most common learning disorder in the United States, but to push for public policies aligned with that knowledge.

For years, dyslexia was largely misunderstood as a reading problem that caused children to reverse letters, and often was seen as a sign of laziness, stupidity or bad vision. The Shaywitzes’ work has shown there is no link between dyslexia and intelligence, and that dyslexia is not something one outgrows.

Their research has found that it affects one in five people, yet even now many never receive a formal diagnosis.

“There is an epidemic of reading failure that we have the scientific evidence to treat effectively and yet we are not acknowledging,” Sally said.

Working from unprepossessing offices on the Yale School of Medicine campus, the Shaywitzes are now updating one of their signal achievements, a study they started in 1983 following 445 five-year-olds in Connecticut.

It was the first study to examine reading continually from childhood through adulthood. The Connecticut Longitudinal Study, or C.L.S., has not only established the prevalence of dyslexia but also has demonstrated that it affects boys and girls in roughly equal numbers.

The couple recently began a new phase of the study, administering reading tests to 375 of the participants, who are now in their 40s. They have no planned completion date.

“We will continue until we no longer have questions and hypotheses that our C.L.S. population can help to address,” Sally said.

Among those questions: What are some of the specific factors that might ameliorate or exacerbate the effects of dyslexia over a lifetime? What are the specific adult outcomes of early reading difficulties? What do the participants wish they had known about their dyslexia early on?

They plan to invite a subset of the participants back for brain imaging to investigate, among other things, whether there has been a change in the neural signature of dyslexia — an anomaly in the brain that shows up in imaging — now that the participants are mature adults.

It is a follow-up to work they did in the early 1990s, when Bennett, who trained as a pediatric neurologist, suggested they scan the brains of 100 of the study’s participants. They were among the first researchers to describe a neural signature for dyslexia, which is characterized by inefficient functioning of neural systems for skilled, fluent reading.

People with dyslexia have trouble separating words into phonemes, the sounds that correspond with each part of a word. For example, the word “dog” is broken down into the phonemes “duh,” “aah” and “guh.”

Hearing these discrete sounds is a vital part of learning to read. But people with dyslexia hear the word only in its entirety: “dog.”

“Perhaps the most important contribution of brain imaging to dyslexia is that it made visible this previously hidden disability,” said Bennett, who was chief of pediatric neurology at Yale for 40 years.

Beyond the lab, the Shaywitzes have developed a celebrity following unusual for scientists. A conference they put on in 2015, titled “Dyslexia: Slow Reader, Fast Thinker,” attracted the attorney David Boies, the Hollywood agent Ari Emanuel, and Dr. Toby Cosgrove, former chief executive of the Cleveland Clinic.

All spoke emotionally of their struggles with dyslexia and said the Shaywitzes’ work helped to save their self-esteem. The conference made the New York Post’s gossip section, Page Six, with the headline “Power panelists wet-eyed.”

Anderson Cooper, the journalist, who struggled with a mild form of dyslexia as a child, met the Shaywitzes this year at an event in New York celebrating their achievements.

“I’ve followed their work for years,” he said. “They’ve done so much to inform people about the reality of dyslexia and other reading problems, and to demystify it.”

Mr. Cooper said he is grateful that his problem was identified early and he went to a “reading doctor.” Now his days filled with a continuous stream of reading and writing. He manages well, he said, although he added that he still occasionally confuses the letter “F” and the number “4.”

The couple’s warmth is legendary. On a crisp New England morning, they greeted me more as doting grandparents than world-class scientists.

Was I cold, they asked? Before I could answer, Bennett offered me a white lab coat hanging behind a door. As soon as I sat down, Sally slid a plate of cookies under my nose.

“You don’t have to eat a whole one,” she said when I demurred. Then came a bowl of fruit. “You can just pick at it,” she said.

The Shaywitzes have spent much of the past decade augmenting their research with concerted efforts to change policy. Bennett, a soft-spoken man whose professional attire almost always includes a bow tie, prefers to remain in the background, letting Sally be the public face for both of them.

She has testified dozens of times before state and federal legislators in a continuing effort to see laws passed that require schools to recognize dyslexia as early as first grade.

“They’ve changed the science, and they’ve changed the public policy dialogue,” said Mr. Boies. “I don’t think any two people come close to the impact they have had.”

John Gabrieli, a neuroscientist at the Massachusetts Institute of Technology’s McGovern Institute for Brain Research, agreed.

“The unique thing about the Shaywitzes is the blend they have,” he said. “They aren’t just outstanding at communicating their work to physicians and researchers and educators, but they have complete heartfelt concern for the children and parents going through this.”

Skye Lucas, 19, was in first grade and struggling when her mother read Sally’s book “Overcoming Dyslexia” (now in its 22nd printing) and got in touch with them. Sally took Skye under her wing, explaining to the girl’s parents that their daughter could be both intelligent and dyslexic.

Sally became a supportive constant in Ms. Lucas’s life, checking in regularly with phone calls and emails.

“I’m proud to be dyslexic, and it’s all because of the support Sally and Bennett have given me over the years,” said Skye, who is now a sophomore at the University of Pennsylvania. “They helped me survive mainstream academics.”

The Shaywitzes met in 1963, at Albert Einstein College of Medicine, where Bennett was a pediatrics intern and Sally a medical student. They married two months later.

Sally trained in developmental pediatrics, and began her career as a clinician working with children who had been referred to her for potential learning disabilities.

“I was just struck because the kids were adorable and intelligent, but they were struggling to read and their parents were terrified,” she recalled.

She evolved from clinician to physician-scientist, driven by the need for more knowledge. She read as much as she could about dyslexia and found that although plenty of studies had been done, there were no population-based studies.

“We didn’t really know things like prevalence or gender distribution,” she said. Thus began the C.L.S.

The couple said there is so much more they need to understand that retirement seems a distant concept. Sally scoffed at the very notion.

“What a joke,” she said.

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