Senior Dana Alliance Couple Demystifies Dyslexia

It was not long ago that dyslexia was believed to be a sign of laziness, unintelligence, or even bad vision. However, thanks to breakthroughs in research by couple Sally Shaywitz, M.D., and Bennett Shaywitz, M.D., stereotypes around the learning disorder have begun to fade.

Affecting approximately one in five people, dyslexia is characterized by a difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words, which is called decoding. Also known as a reading disability, dyslexia affects areas of the brain that process language. Dyslexia is not considered a disease, and its causes are neurobiological and genetic. Those affected by it can fall anywhere on a wide spectrum, and treatment involves adjusting teaching methods to meet the person’s needs.

While it has been studied before, the Shaywitzes are often credited with many of the breakthroughs regarding the disorder. Sally, 76, and Bennett, 79, are both Dana Alliance for Brain Initiative members who have been married for 55 years. Having met in 1963 at the Albert Einstein College of Medicine, the couple now run the Yale Center for Dyslexia and Creativity and have recently updated a study they began in 1983, according to their recent profile in The New York Times.

The profile focuses partly on the Connecticut Longitudinal Study (CLS), their 35 year-old study that examined the reading abilities of 445 five-year-olds from adolescence to adulthood. It was the first study of its kind and has shown not only the prevalence of dyslexia among adolescents, but also that it almost equally affects both genders. However, as the Shaywitzes’ research also shows, many affected by the disorder still do not 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 told the Times.

Other highlights of the Shaywitzes’ profile: They demonstrated that there is no connection between dyslexia and intelligence, and that one cannot outgrow the disorder. Recently, the couple administered reading tests to 375 of the original 445 CLS participants, who are now all in their 40s. Sally says that they will continue testing “until we no longer have questions and hypotheses that our CLS population can help to address.”

According to the article, the couple intend to invite a small part of the group back for brain imaging as a follow-up to studies that they conducted in the early 1990s when Bennett, having trained as a pediatric neurologist, first suggested that they scan the brains of 100 participants. It was then that they discovered and described a neural signature for dyslexia, which means that the parts of the brain responsible for skilled, fluent reading were not functioning efficiently.

Now, the Shaywitzes plan to scan those same brains in the adults who were participants as children, to see if there has been a change in the neural signature. Bennett credits brain imaging in helping to make the difficult-to-diagnose disability of dyslexia finally visible, showing that there is a physical reason for the learning disorder and not simply a lack of willpower or focus.

Along with their research, the couple plans to continue pursuing another of their passions: working to change public policy. Sally, in particular, has been pushing for state and federal legislators to pass laws which would require schools to test students for dyslexia as soon as possible, in some cases as early as the first grade.

The profile also points out that the couple has amassed a following which is usually reserved for celebrities. It is not only their research, but their overall kindness and desire to help further research and remove stigma that make them unique, say sources. With no plans to retire on the horizon, they say, there is still much work to be done.