“If you have dyslexia,” says Karen Pritzker, a filmmaker and philanthropist, “you are part of one of the world’s largest secret fraternities.” Dyslexia affects one in five Americans, including Pritzker. It is an unseen challenge which results in difficulty reading for people who otherwise have the intelligence to be much better readers. “That’s a lot of people who don’t talk about it, struggle, and deal with it every day.”
Through her recent gift to Yale Center for Dyslexia & Creativity, Pritzker aims to shed light on the challenges of people with dyslexia. It forms part of her long-standing support of the center’s founders and co-directors, Bennett Shaywitz, MD, Charles and Helen Schwab Professor of Pediatrics (Neurology); and Sally Shaywitz, MD, Audrey G. Ratner Professor of Pediatrics (Neurology).
The Shaywitzes, both elected members of the National Academy of Medicine, are leaders in dyslexia research who have been featured in the science section of the New York Times and awarded the 2019 Genius Award from the Liberty Science Center for their contributions to understanding dyslexia. “The center has illuminated both the positives and the unexpected of dyslexia, as well as the understanding of what interventions are most helpful to the members of this secret society of which my father was a part, as are I and three of my children,” says Pritzker.
The Shaywitzes conduct the groundbreaking Connecticut Longitudinal Study, which they began in 1983 to follow an epidemiologic sample survey of 445 kindergarteners, and continued through high school graduation and beyond to their current age of 42.
The study is responsible for major breakthroughs in the understanding of dyslexia. Before their study, dyslexia was thought to only affect boys, which their data have proven untrue. “Dyslexia is universal,” says Sally Shaywitz. “It affects all racial, ethnic, and socioeconomic groups.”
The study also demonstrated the prevalence of dyslexia: 20% of Americans, and it revealed an achievement gap beginning in first grade and persisting. “When we saw that, we said, ‘we have to take action,’ ” says Sally Shaywitz. The Shaywitz DyslexiaScreen early screening test is an efficient, evidence-based test for children in K-3. The Shaywitzes also developed a screening test for adolescents and adults.
“This gift allows the Shaywitzes to answer a lot of big questions, and provide for insight into how dyslexia affects people at every stage and age,” says Pritzker. Today, the Shaywitzes are following up on the study’s now-adult subjects. “We are looking to connect outcomes to predictors,” Sally Shaywitz says, which is possible because of the long timeline of their data. “We want to understand not only the consequences, but the factors that exacerbate or ameliorate the outcomes. We will be in the extraordinary position to act on the knowledge to the immediate benefit of people with dyslexia.”
This means not only outlining the challenges of people with dyslexia, but also revealing their hidden strengths which are captured in their sea of strengths model of dyslexia. “They read more slowly but comprehend at a high level,” Sally Shaywitz says. “From a longitudinal perspective, we are trying to develop insights that can be helpful early on, but also to have everyone know you can be dyslexic and be highly intelligent.” This understanding can lead parents and schools to recognize dyslexic children and help them reach their full potential, say the Shaywitzes.
“We always want new knowledge, but in the case of dyslexia, we have sufficient knowledge to move forward,” says Sally Shaywitz. “We must bring 21st century science together with education. We must and we will.”