People with autism spectrum disorder, as defined by the National Institute of Mental Health, can have “difficulty with social communication and interaction, restricted interests, and repetitive behaviors.”
While repetitive, self-stimulatory behavior, or “stimming,” is a common trait in people with autism, it’s not commonly accepted. Oftentimes, parents, therapists and educators view stimming, such as flapping or rocking, as a behavior that needs resolving.
Educator and advocate Joy Johnson, wants parents and others to rethink their stance on stimming because stimming is not always a behavior issue. Johnson, who is currently writing her dissertation on the social validity of stimming, says stimming plays an important role in emotional regulation for people with autism, helping those who are overwhelmed by sensory input to relieve stress and anxiety.
Since stimming can serve a neurological purpose in regulating or managing sensory input, should it be treated as a sensory issue? Should kids with autism be allowed to stim?
A sensory issue
Johnson says yes, provided the stimming is not harming anyone. Johnson has spent years working in clinical settings, nonprofits and schools with families impacted by autism. In her own work, Johnson uses therapies such as applied behavior analysis to help reduce problem behaviors. But if non-harmful stimming activities like flapping or rocking help people with neurological differences cope, she says, maybe the “problem” is not a problem at all but rather a bias toward neurotypical behavior.
Johnson recognizes the bias that rewards neurotypical behavior because she has has firsthand experience with stimming. Johnson has autism and stims. Her oldest son, who has autism, stims. And her oldest grandson, who also has autism, stims.
In the past, therapies “focused on making a person with autism appear to be neurotypical,” she says. “What does that say to someone who is not neurotypical? You can’t be yourself and be acceptable.”
Working with parents whose kids have autism, Johnson sees pushback against stimming that stems from how it appears to people who are neurotypical. Sometimes she asks parents, “Is this behavior really impacting their quality of life? Does it interfere with their function of daily living?” And parents will say, “A normal child doesn’t do this, so I don’t want my child doing it.” Johnson teaches parents that sometimes stimming provides necessary sensory input, telling them, “If it’s not harming anybody, or it just bothers you because it looks odd to you, maybe we don’t target that.”
A behavior issue
But not all stimming is harmless, and not all stimming resolves a sensory issue. Some stimming, such as head banging or scratching, is harmful and requires appropriate intervention, Johnson says. And some stimming is attention-seeking behavior that needs to be redirected.
How can parents determine whether the behaviors they are observing provide beneficial sensory input or whether there are other purposes involved?
Johnson conducts formal functional behavior assessments but says parents can conduct their own behavior analysis at home. She advises clients to track “antecedent behavior consequence data,” which means recording stimming behavior, then examining what preceded it and what the consequences were. “Look for patterns,” Johnson says. If the stimming isn’t happening to get attention or receive a benefit, it’s serving a sensory purpose, she explains.
However, if a parent has determined the function of stimming is behavioral and not sensory, Johnson advises they find a replacement behavior that will give the child a more direct and effective path to the results they seek. Some of her nonverbal clients hold up cards to indicate when they need a parent’s attention.
If the stimming is sensory-seeking but dangerous, find a replacement behavior that provides similar vestibular input. Trying to stop sensory-seeking behavior, Johnson says, won’t work. But bouncing on a ball or swinging can replace harmful behaviors like head-banging to provide the needed stimulus.
A neuro-diverse lens
Looking at stimming through a neuro-diverse lens can help parents identify when stimming is a behavior that needs to be corrected and when it is appropriate to advocate and promote acceptance for stimming.
To reduce social stigma around stimming, Johnson has written a children’s book, “Happy, Flappy and Me,” which is about a little girl who flaps when she’s happy. It’s based on her own experience with stimming. Johnson says she self-advocates and encourages her clients to do the same by learning about their autism and teaching neurotypicals about what it’s like to experience the world with autism.
“The less we target stimming, or hide it, the more people will see it and the more it becomes normal, which promotes neurodiversity,” Johnson says. “Stimming is emotional regulation. This is something that we need. It’s something that I use when I’m studying or reading. It helps to regulate me. It’s not harmful or hurting anyone. It’s not interfering with anyone.”
Johnson says the more people who own and understand their autism, the more social validity behaviors like stimming will get.
“I’m very open,” Johnson says. “Some people aren’t as comfortable. But I think the more you disseminate that knowledge, the more people will understand. If somebody sees me stimming, I want them to think, ‘That’s just Joy. She likes to flap when she’s happy. It’s no big deal.’”
A version of this story originally appeared in the November 2020 issue of Washington FAMILY.