Chartwell-UCSF partnership: Gaining a deeper understanding of dyslexia
SEASIDE — What if schools created curriculum so precise lessons were personalized to each student’s brain? That’s one long-term goal of a new partnership forged between the UC San Francisco Dyslexia Center and Chartwell School in Seaside.
Chartwell is the second school to partner with UCSF on the project, which seeks to understand where dyslexia originates in the brain and the variety of symptoms it causes. UCSF is finding distinct dyslexia groupings, or phenotypes, throughout the population.
Marilu Gorno Tempini, co-director of the UCSF Dyslexia Center, says the study aims to holistically investigate dyslexia, “Thinking of the brain made from different muscles. You want to see the strengths and weaknesses in all the different muscles, to understand where the reading problem is coming from.”
Since 1983 Chartwell, a private school, has served students with a variety of language-based learning differences. Eighty percent of their students have dyslexia. The school groups students in classes based on assessments, not age, in grades first through 12th, and uses multi-sensory and individualized teaching techniques.
To take Chartwell’s curriculum to an even higher level of specificity, the match with the UCSF Dyslexia Center was an obvious one to Katrina Maestri, the chair of Chartwell’s board of directors.
Maestri’s own daughter, Chiara, who is a Chartwell student, underwent assessments at UCSF. “You take something that Chartwell does, which uses evidence-based programs to help these kids access and process information, but then UCSF takes this to the next level [by asking] what’s the root cause, and can we get even more precise with the interventions? And I think most importantly of all, can we help with the social-emotional piece of that?”
The powerful impact the results had on Chiara motivated Maestri to spearhead the partnership between the two institutions.
Chartwell student participants will spend roughly two days undergoing assessments for a “whole brain” evaluation. At the UCSF Dyslexia center, the children undergo an MRI, completing various cognitive tasks while researchers image and analyze what the brains look like during these tasks. Children also give a saliva sample to the researchers so they can explore the genetic aspect of dyslexia.
The second component of the evaluation puts the children in various virtual environments to explore other social, emotional, and cognitive traits involved in dyslexia, explained UCSF’s Gorno Tempini. Through tracking the children’s performance on video games and emotional reactions to video clips, the team can uncover each brain’s strengths and challenges. One of the emotional assessments involves the children watching video clips, while the researchers observe their facial expressions, and measure heart rate, and respiration.
Gorno Tempini says the emotional and social aspect of the evaluation is especially innovative, “Typically in psychiatry people give questionnaires and they ask parents ‘Is your child anxious, is your child distressed, is your child depressed?’ And here we’re trying to measure in an objective way so we could better, for instance, decide if and what medication a child might need.”
Thirty six Chartwell students are participating in the study this year and six students are undergoing assessments with the UCSF team now. For each child, the data from these assessments will illuminate which parts of their brain are most affected by dyslexia, and how that translates to their academic and social life. “For instance, if you have a child that is weak in visual spatial function but very strong verbally, you want to teach them math verbally. It’s not that they have a math problem, it’s the dyslexia that is highly likely to be associated with difficulties in learning other things visually,” said Gorno Tempini.
The next component of the study relies on parents and teachers to incorporate the team’s findings into specific lesson and life strategies for the student, and report to UCSF on the progress the student is making through a computer database. Armed with details on how dyslexia affects the student individually, the hope is that by implementing targeted changes in the classroom, and at home, the student will experience more academic and personal success. Chartwell anticipates incorporating the results of the study into their curriculum by spring of 2019. Jodi Amaditz, director of academics for Chartwell, says. “The information that UCSF provides us would allow us to group like-learners more intentionally, and more specifically than we even do now.”
For Maestri’s daughter, the knowledge she received on her own brain’s inner workings was empowering, “Chiara ends up knowing her brain much better, so she is in a better position to self-advocate. She can describe to other people why she does what she does, without shame, because she knows it’s just how her brain works.”
While these individual-scale goals are important to UCSF and Chartwell, both institutions see the broader implications this study could have on the overall education system. “This is the early work, the research, the data collection…so that it changes education for everybody in the country,” said Chartwell Head of School, Kate Mulligan. Amaditz spoke on the cultural shift she hopes the study will push forward, “Where I think it’s really revolutionary is that people will recognize that dyslexia is medical, it’s genetic… You can study a person’s brain.”
For Gorno Tempini the data from this first “discovery cohort” will be integral in developing wide-scale tools for the general public. While the study assessments are still experimental, the ultimate goal is to use similar methods to create standardized diagnostic tools for dyslexia. These screenings could appear as a game on a tablet, that pediatricians and teachers would use to screen children for dyslexia starting at a young age, even before they read.
And that’s key, says Amaditz. “It’s a model of wait and see,” she says. “But they can find out before the kids are actually reading… that these students are going to start to struggle in a traditional classroom. Then you can intervene early and teach them the way they need to be taught immediately, then they won’t struggle and have all the social, emotional difficulties.”
Gorno Tempini also stressed the importance of screening children at a young age, “We know that the brain is more plastic earlier on so the brain responds better to intervention much better and faster… in the first 10 years it’s particularly a sponge.”
About 15 to 20 percent of the U.S. population has a language-based learning difference, with dyslexia being the most common, “and that 20 percent is too valuable to throw away,” Mulligan says.
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