Friday, September 21, 2018

The Couple Who Helped Decode Dyslexia

The Couple Who Helped

The Couple Who Helped Decode Dyslexia

NEW HAVEN, Conn. — By now, Sally and Bennett Shaywitz may need retired to a lifetime of grandchild-doting and Mediterranean-cruising.

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

Sally, 76, and Bennett, 79, both academic physicians, run the Yale Center for Dyslexia and Creativity.

Their goal isn't just to widen understanding of the scientific underpinnings of dyslexia, the foremost common learning disability within us, but to push for public policies aligned thereupon knowledge.

For years, dyslexia was largely misunderstood as reading the problem that caused children to reverse letters, and sometimes was seen as a symbol of laziness, stupidity or bad vision.

The Shaywitzes’ work has shown there's 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 a plague of reading failure that we have got the scientific evidence to treat effectively and yet we aren't acknowledging,” Sally said.

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

It was the primary study to look at 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 did not have questions and hypotheses that our C.L.S. the population can help to address,” Sally said.

Among those questions: What is a number of the precise factors which may 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 that they had known about their dyslexia early on?

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

It is a follow-up to figure they did within 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 primary researchers to explain 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 weakened into the phonemes “duh,” “aah” and “guy.”

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

“Perhaps the foremost 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 star following unusual for scientists. A conference they placed 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 light sort of dyslexia as a toddler, met the Shaywitzes this year at an occasion in NY celebrating their achievements.

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

Mr. Cooper said he's grateful that his problem was identified early and he visited a “reading doctor.” Now his days crammed with an endless 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 laboratory coat hanging behind a door. As soon as I sat down, Sally slid the plate of cookies under my nose.

“You don’t need to eat an entire one,” she said once 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 necktie, prefers to stay within the background, letting Sally be the public face for both of them.

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