My son stims. He performs repetitive motions in order to generate sensory inputs that he experiences as fun, aesthetically pleasing, soothing, exciting, or otherwise necessary. The word comes from the clinical term, “self-stimulatory behavior,” but there’s no need to be that clinical about it. His stimming is beautiful. To get him to stop stimming would require intensive coercion that, even if successful, would likely result in irreparable psychological harm.
Meanwhile, for over 50 years, therapists who practice something called “applied behavioral analysis” (ABA), an approach that has generated a massively well-funded industry, have tried to eradicate these types of behaviors in autistic children. In the past, therapists used cattle prods or other methods of causing pain in order to coerce compliance. Some schools still use electric shocks, but, today, most ABA therapists have switched to withholding rewards in order to eliminate stimming and other behaviors deemed barriers to inclusion. An autistic child, such therapists say, must have quiet hands and be “table ready.” Friendly coercion is still coercion. Meanwhile, my son stims.
My son has been stimming since his first year of life, although we have only recently begun using that language to describe it. He has Down syndrome, but in the last few years, it’s become clear that he is also autistic. The two conditions co-occur fairly commonly. As an infant, he would rock back and forth on his hands and knees in his crib. As he aged, he learned to do the same rocking motion on beds, couches, or the floor, while listening to music, especially when tired. When he’s not stimming with his whole body, he likes to shake something repeatedly, usually with his left hand. I remember a succession of toys: a firefly, a rat puppet, and then a series of stuffed white tigers that had to be replaced as their tails ripped off. At some point he found his true muse in plastic Mardi Gras beads. Today he is highly particular about his beads, weighing them experimentally with little practice shakes before selecting one string that he will use until it breaks. He moves through his world accompanied by the soft click of beads as they dance.
To the casual observer, his stimming seems to consist of simple up-and-down motion. But slowed down, as in this video, one can observe the elegant intricacies of his pattern-making. He subtly flicks his wrist or shifts his grip, encouraging the beads into helices of motion and fractal whirls, then releases them back to gravity’s lure so they descend to hang at 90 degrees to the floor. Sometimes he watches them and observes the movements, but more often the arm moves without any visual input, the feeling traveling up his fingers into his arm and toward his brain enough for him. The results are beautiful.
I don’t want to pretend that I know what stimming feels like for my son. Parents of disabled children claim to speak for them far too often. My son doesn’t need me to do that. He communicates in many ways. He is, however, non-speaking, and so far he and I have not devised a system for him to describe complex internal sensations. So with the caveat that no two people experience anything, including stimming and autism, exactly the same way, I reached out to two autistic activists and asked them about their own experiences.
Julia Bascom, executive director of the Autistic Self Advocacy Network, tells me over email that “Stimming is a way that we can help ourselves feel calm, soothed, or focused, but it can also be a huge source of joy and beauty.”
“I don’t know how to explain what that joy feels like to neurotypical people,” she writes; “I think it might be a little like dancing, or seeing a beautiful piece of art, or becoming totally engrossed in a piece of music, times 10. But we can get it just from flapping our hands.” The calming effects are as vital as the potential for pleasure.
“Eb,” a disability justice leader, tells me over direct message that they stim both physically and visually because “The world is full of all sorts of sensory stuff that’s outside of my control, and a lot of it is really unpleasant and upsetting. But when I stim, that’s something I’m in charge of. I also think it helps get rid of some of the pent-up frustration I experience while ‘behaving appropriately.'”
Bascom notes that “everyone stims,” pointing to activities like bouncing one’s leg, humming to oneself, or pacing, but notes that “Autistic people do tend to stim more and in more unusual or noticeable ways than other people. Our brains and bodies work differently. We process a lot more sensory information, we might have a harder time finding our body in space or controlling our impulses, we might feel emotions more strongly…. Our brains can be very intense. All of these things can make self-regulation a challenge, so we stim more.”
Ole Ivar Lovaas, the originator of the practices and ideas that came to inform ABA therapy, saw stimming as an obstacle to normalization. He originally got involved with treating autistic children who manifested disturbing self-injurious behavior, and he used electric shocks to try and stop the self-injury. Lovaas also sought to eliminate all forms of stimming. Steve Silberman, author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity, says that Lovaas “would say things like, ‘they have eyes, they have ears, they have noses. But they’re not really people. You have the raw materials of a person, but you have to build the person.'”
Lovaas called stimming, Silberman says, “garbage behavior. He believed if a kid was stimming, they were temporarily unavailable to learn.” Lovaas drew this conclusion because children in his laboratories would stim and resist learning when placed under conditions of extreme stress, though Silberman emphasizes that the stress itself was more likely the cause. What’s more, Silberman says, Lovaas fundamentally misunderstood the relationship between stimming and learning. “We know now,” Silberman says, “that stimming makes more executive function resources available in the cortex.” It enhances the potential to learn.
With a few notable exceptions, Lovaas’ method of applying pain to autistic children to change their behaviors was quickly abandoned by his disciples, but the concept of trying to erase “autistic” behaviors remains enshrined in too much parenting and therapeutic doctrine. Today, ABA therapy typically relies on withholding positive reinforcement until a child stops stimming, makes eye contact, or otherwise performs as desired. When insurance companies cover therapy for autistic children, which is increasingly the case thanks to state mandates and shifting federal regulations, they often only cover ABA. This therapy is enormously expensive and lucrative for the providers. It typically involves 40 hours of work, mostly performed by low-paid assistants under the direction of a a highly compensated therapist treating multiple children. Costs can easily run above $45,000 a year per child, with some estimates as high as $100,000 per year. Private equity firms, sensing a potential new frontier with massive insurance-driven profits, are getting into the business.
Part of Bascom’s work at ASAN is to push back at the rationale behind ABA therapy. “The stated goal of the founder of ABA was to render autistic children ‘indistinguishable from [their] peers,'” she writes. “Not to support autistic kids, help us learn and grow and become happy and self-determined adults, but to remove all visible signs of autism.” In such a framework, stimming becomes a behavior that has to be suppressed. “Children in ABA programs learn that their body is not their own,” Bascom observes, “that the way they move is wrong, that there is no neutral way for them to naturally exist in the world.”
To be sure, ABA advocates would disagree with Bascom. Kathryn Sneed, who writes about parenting as a military spouse, has written a blog post that is fairly typical of ABA defenses. In the post, “True ABA Therapy Is Not Abuse,” Sneed deploys the “No True Scotsman” fallacy. For her, any therapy with negative outcomes is dismissed as not “true” ABA therapy, leaving only positive-reward treatment as the real deal. Here’s the problem: Even if individual children and individual therapists achieve great things together under the rubric of ABA, the fundamental goal of using coercion (even the “positive” coercion of withholding rewards) and demanding compliance to modify behaviors remains inherent to the practice.
Behaviors can be complicated. I recognize that there are autistic people who engage in repetitive behaviors, including self-harming ones, that go far beyond a little bead shaking, and self-harm has been used as a justification for ABA since Lovaas.
Bascom doesn’t deny that self-harm is an issue, but argues that the key in such circumstances is to figure out the cause. “If someone’s stims are hurting them,” she writes, “we need to figure out why they are happening, and find a way for that person to get their needs met. We should be looking for medical causes, and supporting people to get their mental-health needs met and to access robust, effective communication. Imagine being in serious distress, and the only response of those around you is to punish you for expressing that distress. Eventually, you stop, sure, but the distress continues—and now you feel even more alone.” Eb agrees, admitting that they sometimes stim by picking at their skin in ways that can leave small scars, but says, “If someone is stimming in a self-injurious way, I think the answer isn’t to stop them stimming altogether but help them identify a less harmful stim that does what’s needed.”
On the Monday after daylight savings time began this fall, my son woke up grumpy. The weekend had included a long drive to visit my mother in hospice, and the transition back to a normal schedule, coupled with the intense emotions of the visit, was tough on all of us. I made coffee, and my son grabbed an iPad, and selected a YouTube video of “Let It Go,” from Frozen. He started rocking on his hands and knees with hard, jerking motions, on the couch, while singing at the top of his lungs. Honestly, it wasn’t my favorite way to start the week. But the familiar stimming, a pattern of motion and sensory input he’s been generating since nearly birth, got him through the next few minutes of waking up as I prepared breakfast. I sat near him on the couch and, after a few more rocks, he shifted to lean his head against me in a brief snuggle. Then he picked up his beads and walked to the table where his favorite cereal waited, left hand twisting the gold-painted plastic into a clacking helix of motion. As he sat, he passed the beads to his other hand, their motion never stilling, as the freed digits of the left reached for his spoon.
The author has donated his fee for this piece to the Autistic Self Advocacy Network.
