Serious Play: Using Games to Screen for Fragile X

by Gordy Slack

Professor Greg Niemeyer is leading development of fun, interactive games that could diagnose fragile X syndrome in children.

Games are not supposed to be serious; that is why they are called games. Or, at least, that is what conventional wisdom tells us. But UC Berkeley new media artist Greg Niemeyer is tweaking that convention, if not turning it on its head. Games are fun, he says, but they can also do important work.  

Games can be great teachers, at least in part, because they are not serious. When we play, we let down our defenses, open our minds, focus our attention, and let the learning-inducing neuromodulators flow. The serious/fun game paradox is one that Niemeyer and his co-investigator Kimiko Ryokai are happy to work with.  Niemeyer is an associate professor in Berkeley’s Center for New Media and Ryokai is an assistant professor with a joint appointment at Berkeley’s School of Information and the Center for New Media.

They have teamed up with a very serious person, pediatrician Randi Hagerman, medical director of the UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute, to make a fun game that will screen pre-school-age children for fragile X syndrome and provide therapeutic intervention targeted at improving visual attention in those children. Fragile X is the most common form of inherited mental impairment; its symptoms range from mild learning disabilities to severe mental retardation and autism-like behaviors. Hagerman wants to catch children with fragile X earlier in life, a tricky proposition, especially in poor urban areas like East Oakland, where visits to the doctor, and hence identification of the syndrome, are relatively rare.

Fragile X syndrome is caused by a mutation in the FMR1 gene on the X chromosome and results in difficulties in the areas of learning, coordinating visual-spatial and visual-motor information, numerical processing, and inhibitory control. While reliable DNA testing methods are available, FXS is often undiagnosed until the age of 2 or later unless family history of the disorder exists.  Administering the tests that reveal the syndrome requires professional oversight, which can be difficult to obtain in underserved communities. In East Oakland, and other low-income, underserved areas around the country, children suffering from fragile X often go undiagnosed until elementary or middle school. If identified earlier, these students would qualify for intervention services and medical help that could make a big improvement in their lives and the lives of their families, says Hagerman, an expert in diagnosing and treating the condition.

Fragile X syndrome is mainly caused by a mutation in the FMR1 gene on the X chromosome and results in the reduced ability to learn and memorize.

Today, associate professor Susan Rivera and graduate student Faraz Farzin, who are also associated with the M.I.N.D. Institute and the Department of Psychology at UC Davis, are using  infrared eye tracking technology to examine the development of these abilities in infants with and without fragile X syndrome. Their research, in collaboration with associate professor and vision scientist David Whitney, has shown that attention-based position tracking is impaired in infants with fragile X syndrome. This new finding served as the primary guide for this game-based screening tool, and these researchers are interested in potential uses for the games involving targeted interventions for children with fragile X and other neurodevelopmental disorders.

In November 2008, Niemeyer and Ryokai will introduce a fun-to-play computer game that could be distributed at low cost, into a pre-school in East Oakland's Foothill Square Shopping Center. Called Track FX, the game will be played on a large touch-screen monitor encased in a durable, smooth wooden cabinet. One early-concept prototype starts with opposing rows of dots. The player tries to keep track of those dots as they disperse and bounce around the screen.  When the dots stop, the player tries to pick out the dots that started together on one side. The final version, Niemeyer says, will be simpler and will include a cartoon character that will be captured by “occluders.” It will be fun and challenging, but also revealing, says Niemeyer.  Young children who cannot keep track of the character, or who do not make progress as they practice, should be checked for developmental delays, including fragile X syndrome.


Niemeyer and Ryokai are also collaborating with Cecil Brown, celebrated author and filmmaker, who will help weave culturally relevant narratives into the game. In this case, the users are the children and the teachers who run the games their classrooms. For the first several months of the game's development, Niemeyer and Ryokai will alternate weeks with the school; “The kids will use the game for a week, then we will work on development for a week, then back to the school for a week, and so on,” says Niemeyer. This back-and-forth collaboration is called “co-design” or “participatory design.”

The game could be used a “screening tool,” not a formal “diagnostic test,” says Hagerman. Those identified as potential fragile X cases by the game would be referred for further testing.

Games like Track FX can be used not only to screen for conditions like fragile X, but also to help children suffering from such conditions to improve, says Hagerman. She and her colleagues at UC Davis are developing medications to increase activity in the parts of the brain that develop atypically in individuals with fragile X.  In combination with those medications, games that increase visual attention could help strengthen brain connections in both children and adults suffering from the syndrome.

Young brains are more plastic and responsive to such exercises than older brains, providing yet another reason to identify and begin intervention with children with fragile X as young as possible.

“Games are tools of engagement,” says Niemeyer. “They can help patients sustain activities that will help their recoveries. Kids are much more likely to stick with exercises that are fun and engaging.”

Niemeyer and Hagerman are developing another game, Balance FX, to help address the ataxia that plagues adults with FXTAS, a condition that develops in some older carriers of fragile X. The game’s interface is a one-foot-square aluminum force plate that sits on the floor, a bit like a bathroom scale. The player stands on the plate and, by tipping his or her weight in any direction can manipulate objects on the screen. The applications are contemplative, challenging, and fun, requiring a mixture of yoga-like physical control and mental attentiveness. 

Niemeyer developed Balance FX as a fun work of art, not as a diagnostic or clinical tool.  He was giving a lecture at a CITRIS event at UC Davis last year when Hagerman saw the talk and recognized its potential to help her older fragile X carriers.

Computer-based games can also help clinicians and researchers to remain connected with the progress of their patients.  As they are played, the games can track whether a patient improves, plateaus, or worsens. Then they can analyze that data and make appropriate recommendations specific to the patient’s needs.

“We can sort every single move a kid makes in the game. We can track the position of the finger at every fraction of a second. We can see how fast they moved, how many times they tried. And those are all markers of particular behaviors and could be useful to the doctor,” notes Niemeyer.

The games could also store and analyze results over epidemiologically significant areas, adds Niemeyer, allowing doctors and administrators to measure the results of programs designed to address conditions like fragile X.

The need to gather statistics from the games presents a challenge for Niemeyer and Ryokai, however. “To generate useful statistics, these games have to be regular and rule driven,” Niemeyer says. "”But to be fun they have to be unpredictable. Those are often opposing elements. We have to work hard to find the mean that works. And of course,” adds the artist, “they also have to be beautiful.”