As Raya Shields goes about her day, she sometimes rocks back and forth, flutters her hands and presses down on her eyelids with her fingers to create a kaleidoscope of visual patterns.
Shields has ‘stimmed’ like this for as long as she can remember. She can be seen fidgeting with a piece of fabric in some of her baby photos. In other pictures, she is folding herself into a human pretzel of arms and legs. Now 28, Shields cannot imagine going even an hour without stimming. In loud, busy environments, such as on the subway train she takes to get to work, she calms herself by rocking or folding herself up. And when she visits a favorite place, such as her neighborhood laundromat, she jumps up and down with excitement, flapping her hands.
“[Stimming] helps me feel grounded when I’m anxious or overwhelmed, but it’s also a way that I express my joy, fascination or excitement,” she says. Shields is autistic, and she also has Tourette syndrome and obsessive-compulsive disorder.
Others haven’t always looked kindly on her stims, or repetitive behaviors. Her teachers told her to suppress her stims, calling them inappropriate and disruptive — and so she tried to stifle them. To stop herself from snapping her fingers in high school, she sometimes crossed her fingers so tightly that they hurt. But that made it almost impossible to write, and her schoolwork suffered.
As an adult, Shields started to encounter autistic people who saw stimming as a positive part of their identity. Over time, she grew to embrace her own stims. Last year, in fact, Shields helped launch the first International Day of the Stim to provide an outlet for autistic people to celebrate their stims. Throughout the day, they shared their stimming experiences on social media or in coffee shops all across Canada. The event had a grassroots feel, says Anne Borden, co-founder of Autistics for Autistics (A4A), a self-advocacy organization that helped coordinate the event. “It was really an example of autistic people reclaiming something that, through negative and abusive therapies, had been taken away,” she says.
For many people like Borden and Shields, a shift in the perception of repetitive behaviors is long overdue. Restricted and repetitive behaviors are a central feature of autism and include not only repetitive movements such as hand-flapping, but also an intense interest in particular topics — such as train schedules or maps — and difficulty altering routines. Most scientists historically viewed them as something to eliminate or at least minimize — especially if it appeared to hinder a child’s daily life.
But studies suggest that some of the behaviors, such as body-rocking and arm-waving, help guide typical development. And many non-autistic children also engage in stims such as fidgeting or fiddling with objects. What’s more, a growing body of evidence from the past decade reinforces the notion that repetitive behaviors can help autistic people relieve sensory overload, cope with anxiety and express emotion.
As such, scientists have begun to realize that taking the behaviors away might do autistic people more harm than good. “There’s been a changing in thought about repetitive behaviors,” says Benjamin Yerys, assistant professor of psychology in psychiatry at the University of Pennsylvania.
Research on the roots of repetitive behaviors is also beginning to suggest that people may stim just for pleasure: Some repetitive behaviors activate the brain’s reward circuitry. “There’s been a lot of autistic researchers that have really been quite vocal about this, and I think we are listening to that as a field,” says Clare Harrop, assistant professor of allied health sciences at the University of North Carolina at Chapel Hill. As experts increasingly accept the positive sides of stimming, they are tailoring treatment plans for autism to consider the purposes these behaviors so often serve.