The art of stimming
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, in 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, stims 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 “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.
This story originally appeared as The art of stimming on Pacific Standard, an editorial partner site. Subscribe to the magazine’s newsletter and follow Pacific Standard on Twitter to support journalism in the public interest.
The Dark Side of the Stim: Self-injury and Destructive Habits
In my previous article, Stimming 101, I wrote about autistic stimming as a normal and healthy aspect of autistic identity. While this is most often the case, I want to follow up with a slightly different article, because not all stims are created equal.
Sometimes stimming is unhealthy or even dangerous.
Parents, caregivers, and autistic people all need tools to deal with these types of stims. We in the autistic advocacy community often paint all stimming as wonderful and healthy, leaving high and dry those who need help. So, let’s talk about the dark side of the stim.
The Dark Side
One of the most frequent questions I get from readers is what to do about unhealthy stimming. These requests come from both non-autistic caregivers and autistic people. A few typical examples include children who bang their heads against walls, teenagers who bite their fingers and nails until they bleed, or adults addicted to self-harming behaviors like cutting or burning.
As I discussed in Stimming 101, stimming serves a variety of purposes.
Many people require various forms of sensory input to regulate their systems. For example, people with ADHD benefit from mild background music while working to keep up their dopamine levels and maintain focus.
Stimming can also be an outlet for overload—sensory or emotional—and provide a feeling of relief and reset from overwhelming feelings. Examples of this can even be seen in overexcited neurotypicals.
Related to the latter but slightly more extreme: stimming can provide a safe haven from full overload and meltdown. Regular, strong stimulation provides a focus point for the body and mind, helping to shut out painful stimuli.
The stronger the overload, the stronger the stim has to be to provide the needed relief.
This last purpose is a primary source of unhealthy stimming, for this very reason.
Everything Louder than Everything Else
How do we respond to discomfort? To fear?
Let’s look first to film and literary clichés for examples…
We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. We slap hysterical people to knock them out of it.
What do all these methods have in common? They all involve the distraction of pain as a coping mechanism.
Have you ever been so upset that you instinctively retreated to the distraction of overwhelming stimulation, even in a mild way? Perhaps you relished the burn of a pure shot of vodka, squeezed your hands together a bit too tightly, or jumped into a too hot shower.
There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.
All other sensory receptors, when continually stimulated, eventually stop firing.
If you walk into a house with too many cats you may cringe at the strong scent of kitty litter, but if you stay and hang around you’ll stop noticing the smell. This isn’t about attention, this is a physiological reaction. You really do stop smelling the cat pee.
But if you’re in pain, you won’t acclimate to it. As long as the reason for the pain is still present, your nervous system will keep on sending you those signals. Not only that, but it will prioritize that sensation above others.
Pain is perhaps the strongest bodily sensation we have. It covers and blocks out all other sensations. This is what makes it so useful—it tells us when something is wrong. It keeps us safe when we are injured and need to tend to our wounds. But this is also what makes it so dangerous for those prone to sensory overload.
Most people have never felt sensory or emotional discomfort so strong they would injure themselves to cover it. But to a person with a sensory or emotional processing difference that threshold can be much easier to reach.
Types of Unhealthy Stimming
I’m going to focus here on the most common types of unhealthy stimming that readers bring to me. There are always going to be exceptions that don’t fall into a neat label, but in an effort to be as practical as possible, I’ll divide unhealthy stims into two major categories: Overload, and Bad Habits.
These are the stims drown out everything else. Including:
- Hitting the head (against a hard surface or with objects)
- Biting or scratching the hands, arms, or other parts of the self
- Hitting oneself or throwing the self against hard surfaces
- Tearing or pulling at the hair
- Other extreme injurious behaviors that come on suddenly and forcefully
2) Bad Habits
These stims, while still unhealthy, are done in a more slow and controlled way. They may come on gradually and escalate, or may occur at low levels continually. Including:
- Biting, picking, or scraping at the finger or toe nails to the point of injury
- Dermatillomania and trichotillomania (skin picking and hair plucking, respectively)
- Self-harm behaviors such as cutting, burning, stabbing, etc.
- Biting or scratching the self at a continuous, low-grade level (e.g., chewing on the hands)
- Pica (eating non-food items, such as paper or tinfoil)
- Other dangerous or injurious behaviors that are done relatively calmly, either continuously, in all or most contexts, or under stress
Addressing Overload Behaviors
There are two primary ways to interrupt dangerous overload stimming. The first is to remove the problem stimulus that’s causing the overload. The second is to redirect the behavior while still addressing the need for stimulation. Usually, some combination of the two methods will be most effective.
Removing the problem
This first method is most effective as preemptive intervention, or during the initial, ramp-up stages of meltdown.
Preemptive intervention requires the problem stimulus to be specific, predictable, and controllable.
For example, my mother once worked with an autistic little girl who had several triggers along these lines. If she heard a studio audience applauding on TV, or saw her sister’s bellybutton, it would set off an intense self-injurious meltdown. These meltdowns could be averted preemptively, by turning off the kids’ favorite show before it panned to the audience, and by bathing and dressing the girls separately.
Removing a problem stimulus can also be effective if you catch the meltdown during the early stages. I once worked with a little boy who would start pulling at his hair in the build up to a meltdown. If the build up continued, he would progress to hitting himself in the head with his fists. Hair pulling was the warning sign I watched for.
If you are the caregiver
Intervene with this method if you know a trigger is coming, see the problem behavior beginning, or notice warning signs that it is about to start.
If you are the autistic
If you struggle with dangerous overload behaviors, tracking your own meltdowns is similarly important. If possible, it’s helpful to have a second person who can keep track of your meltdown patterns for you. If you don’t have that luxury, then journaling during mild to moderate overload is one alternative (journaling during full meltdown is usually impossible).
One way to begin the process of tracking your warning signs is to use an app that will remind you at intervals to record how you feel. I recommend either default reminder apps (setting reminders at hourly intervals), or something like iMoodJournal for iOS.
Focus on physical sensations: How does your stomach feel? How do the muscles in your face feel? Do you feel hot or cold? And if so, where? Do you feel numb or tingly anywhere? Keep track of what your body is doing at continuous intervals. Then, if you have a meltdown, you can later look back over your journal entries and check out how you were feeling in the hours leading up to it. Similarly, just setting continual reminders to check in with yourself can help you avoid meltdowns entirely. I’ll write a future post on how to develop these types of meltdown coping skills.
The important element is learning to identify the signs that a meltdown is coming, and to interrupt it before it reaches the point of no return. Whether that means leaving a party, turning off the music, or moving to a quiet, dark room, this method is about removing a problem.
This method is NOT helpful if the problem is an emotional one. For anyone who struggles with emotional overload, I recommend seeking Dialectical Behavior Therapy (DBT) or Cognitive Behavioral Therapy (CBT) from a qualified provider with experience working with your particular diagnosis. If you don’t know where to start, I recommend browsing the Psychology Today directories.
Redirecting the behavior
This method is the most practical, and the one you will probably need to make use of the most often.
What if the problem stimulus is schoolwork? Wearing clothes? A perceived slight from a stranger? An argument with a significant other? Puberty?
What if the stimulus can’t be identified, can’t be removed practically, or is too abstract to remove? Or what if the meltdown is already so intense that removing the stimulus doesn’t help?
In situations like these, the dangerous stimming needs to be redirected, and replaced with a safe stim that serves the same purpose.
If you are the caregiver
It is your job to find a way to provide intense, unignorable stimulation that will drown out the world and provide a focal point for the person having the meltdown. The type of input depends on the person.
For example, that little boy prone to hair-pulling and head-hitting I mentioned earlier favored auditory and vestibular input. Playing a favorite song very loud, while picking him up and swinging him around, was the best way to help him through his meltdowns.
A few examples of safe, intense stimulation to provide are:
- deep pressure (squeezing up and down the arms, pinching the finger tips, a strong bear hug, or lying on top of the person)
- vibration in the chest area or around the mouth (a massager on the chin and mouth area, or rhythmicly pounding on their back with your hand)
- loud music (playing a rhythmic, sensory oriented song, or singing right in their ear)
- strong vestibular input (spinning or pushing them in a swing, or, if size and strength allow, picking them up and spinning them around)
If you’re not sure what kind of stimulation your charge likes best, pay attention to what they’re seeking through their behavior.
- Is she hitting or biting herself? She needs deep pressure. Focus first on the areas she’s hitting.
- Is he screaming? He needs auditory input. Play some loud music. Using your phone is best, since you can move it around. For added input, move the speaker back and forth, from one ear to the next, or move it forward and back, close to the ear and away again.
- Is she throwing objects, trashing the room, or throwing herself on the floor? She needs vestibular input. Put her in a swing, on a bouncer or trampoline, or pick her up and spin her around.
If you are the autistic
Start by compiling a list while you’re calm of ideas for intense sensory input. Keep multiple copies scattered around, such as on your phone, on your computer, and posted up on your fridge. You need a bank of sensory options that you can keep adding to over time. Ideally, what you’re looking for are different types of intense stimulation that can provide a sensory buffer or sensory reset to give you the input you need without resorting to hurting yourself.
A few of my favorites are:
- Hold ice cubes
- Have another person sit on you, or invest in a weighted blanket
- Keep a playlist of intense, sensory oriented music you can blare in headphones (feel free to contact me for recommendations)
- Squeeze your wrists, hands, and fingertips (push down on the nail) instead of biting or scratching
- Take a cold shower or bath
Again, the goal is to keep adding to the list every time you think of or find a new idea.
Addressing Bad Habits
Bad habits are often more difficult to deal with than dangerous meltdowns. Where meltdowns come and go like hurricanes, bad habits are ever-present. But similar guidelines apply for handling these. You can try to remove the trigger, redirect the behavior, or both.
Removing the trigger
This one isn’t always possible with bad habits, sadly. But for some habits, it can be. For example, If your child eats glue, and you’ve tried and failed to redirect this, your next step is to lock up the glue.
One of the bad habits I have is biting my lips. For whatever reason, my lips chap very easily. This mean I nearly always have little tears and flakes of skin on my lips. If and when I inevitably feel them (either with a finger or by rubbing my lips together), I compulsively bite at the flaps of skin and peel my lips to pieces. The more I bite, the more flaps and flakes appear. It’s a self-propagating cycle. The only way I’ve found to interrupt this behavior in myself is to always have lip balm available. If I can smooth down the flaps and flakes with balm, I won’t feel them as much, and then I can avoid the trigger (feeling the rough texture) that causes the behavior.
I was able to quit biting my nails much the same way. But because this process was more involved than simply applying lip balm preemptively, I’ll include it under redirection.
*EDIT: A Note About Root Causes
I recently received a message that reminded me of something I forgot to address here. Many “bad habits” or self-destructive stims can come from root causes that need to be addressed. For example, the message I got was a story about a root cause I’ve heard happen to more than one person: An autistic teen suddenly developed a new, very violent stim of banging his head against the wall. He was brought to doctor after doctor, and no one could figure out the problem. One professional even went so far as to dismiss the issue, telling the boy’s parents that this was “just something autistic people do,” and they would have to get used to it. Eventually, they noticed something. His wisdom teeth were coming in impacted, pressing into a nerve! He was in horrible pain, and banging his head against the wall was his only coping mechanism.
Often if there’s some underlying medical issue it may go unchecked because an autistic person can’t speak to effectively explain the problem. These issues may also go overlooked in more verbal autistics, if due to alexithymia, they either don’t understand the problem themselves, or can’t articulate it well.
Some examples of common medical issues that can cause self-injurious behavior are:
- Inflammation (allergies, autoimmune disorders, food intolerances, bad drug reactions)
- Dental issues (cavities, new teeth budding, broken teeth, mouth injuries)
- Gut issues (IBS, celiac, injuries, menstrual cramps or PMS, UTIs)
- Headaches (migraines, low blood sugar, low blood pressure, TMJ/jaw cramps)
Redirecting the behavior
Redirection involves identifying the sensory need that’s creating the stim, and filling it another way.
Besides lip balm, another thing that keeps me from biting my lips is having chew toys on hand. My favorite stim toy supplier, Stimtastic, sells adult-friendly “chewelry” that looks nice to wear while still serving its purpose. Chew toys can also help with pica, though I would advise getting only the strongest toys, or else the toy itself can become the dangerous object.
I once worked with a teenage boy who chewed at his fingers and scraped them with his teeth nearly constantly. This would create ever-present wounds small and large on his hands. The only way I found to redirect this behavior was to give him something to hold with a rough texture. The more texture, the better. He could then rub the thing he was holding instead of rubbing his fingers against his teeth.
While I never had issues with chewing or scraping my fingers, I did bite my nails compulsively and unconsciously for over 10 years. I would bite them down so far that my fingers were constantly in pain. The process for overcoming this habit was long, and very methodical. I’ll share the details, because I’ve found that the steps I used to break this habit have been essential in breaking others.
How I stopped nail biting
Because I was biting unconsciously, I couldn’t simply decide to stop. I first had to identify the warning signs. For this, I enlisted the help of a second person.
I told my boyfriend at the time to watch me, without interrupting the biting, and tell me what the process looked like.
He told me that before I started biting, I would begin touching my fingernails. I would feel along my nails with the tips of my fingers, and rub my nails against my lips. I was feeling for rough patches. Then, when I inevitably found some irregularity, I would bite. This was the point of no return, because if I found a rough patch, I had to get rid of it. I couldn’t choose not to. It became a compulsion.
At first I tried to stop feeling for rough patches. But this simply wasn’t practical. I couldn’t avoid touching my fingers in my everyday life, let alone break the habit of feeling for rough spots.
So I found a way to redirect, to choose a healthy alternative.
I started carrying a nail kit with me.
I kept a nail kit in my bag. And if I didn’t have a bag, I made sure to have a nail file in my pocket.
From that point on, whenever I felt a rough spot on a nail, I could file it down. I could get rid of the rough patch without biting. And filing away a rough patch always removed less nail and skin than if I had tried biting it away, because biting only created more rough spots.
Eventually, as time went on, my nails grew long enough that I could fully redirect the habit into something no longer destructive. Now, I have a new stim to do with my fingers. Something I do constantly, unless I’m holding something. Now, I clean under my fingernails, whether there’s something under them or not. It looks either snobby or slobby, depending on context. But at least I’m not biting!
To summarize, the best methods for redirecting bad habits involve finding a similar stimulus. If the habit involves the mouth, use gum, or a chew toy. If it involves the hands, find a fidget toy.
Some bad habits are more difficult to redirect, such as self-harm. A few quick examples of ways to redirect self-harm behaviors and distract yourself from these thoughts are:
- scribbling on a piece of paper until the entire page is black
- drawing pictures on your skin
- following other painful-but-safe coping strategies, like those listed above in the overload section (holding ice cubes, cold shower, loud music, and so on)