Flap like a butterfly; stim like a bee

Accepting stimming as an
important mode of expression

Stimming is when someone moves repetitively, such as with hand-flapping, tapping, dancing, humming, etc.

For example, my stim involves a small bunch of interlocking metal rings. The objects autistic people use to stim are colloquially referred to as stim toys. When recording podcasts, I typically stim with these rings as I have the conversation. I find that stimming improves my ability for active listening, especially during long conversations.

Indeed, any sort of cognitively demanding task will unconsciously involve me stimming as I work through the problem. Something about the repetitive movements locks me into my work and allows me to funnel that concentration onto the object of my mentation.

However, stimming has a very wide variety of expressions and meanings.

Stimming for science

A qualitative study from 2019 on the stimming behaviors of 31 autistic adults was headed by a University of Exeter research fellow, Dr. Steven Kapp. What’s novel about Dr. Kapp’s study design is that it relied wholly on the accounts of autistic people. This approach allowed the interviewees to inform, from firsthand experience, why they stim and what—for each individual—causes these stims.

Historically, researchers have favored measuring deficits and disabilities in their autistic subjects.^[1]Stimming, therapeutic for autistic people, deserves acceptance | Spectrum News This focus on deficits is further compounded by the issue that most researchers are neurotypicals, therefore they haven’t any firsthand experience to draw on.^[2]“People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming

Although the underlying neurological reasons that give rise to stimming has eluded science so far, it’s increasingly becoming clear that stimming isn’t a behavior that needs correction (excluding cases of self-harm or injury to others). In fact, stimming is proving to be a healthy and constructive way of modulating emotions and external stimuli.^[3]Stimming, therapeutic for autistic people, deserves acceptance | Spectrum News One of the participants of Kapp’s study notes:^[4]“People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming

It helps you talk to yourself at a rhythmical pace, so when I’m doing this I can sort of think in the rhythm that I’m moving my hand … which is very helpful because it means like when you’ve got your internal monologue it doesn’t all come in at once and you find yourself sort of shouting at yourself in your head to get everything done. (Luke)

Across the Atlantic, at the Georgia Institute of Technology (GIT), in 2005 a team of researchers created a proof-of-concept prototype that captured some common stimming behaviors. The device consisted of three accelerometers: one placed on the subject’s right wrist, another on the back of the waist, and finally on the left ankle. The subject was a team member who trained the device to recognize a variety of movements, some stimming while others were everyday movements like walking.^[5]Recognizing mimicked autistic self-stimulatory behaviors using HMMs (Westeyn et. al., 2005)

The GIT team plans to test the device on an autistic child for its next study.^[6]Recognizing mimicked autistic self-stimulatory behaviors using HMMs (Westeyn et. al., 2005) While this device can offer great insight into the neurophysiology of stimming—especially in conjunction with fMRI scans—I’m hesitant to embrace it. This technology may open the door to apps connected to wearables, so parents—and perhaps, ABA therapists—can catch a child stimming and unnecessarily change these behaviors at the detriment of the autistic child. Understanding and acceptance of atypical behaviors are crucial to applying technology in a way that benefits autistics rather than further castigating them.

Why can’t you just sit still?!

Many autistic people, unfortunately, have received weird looks, taunts, or outright aggression for stimming.^[7]Autism: sensory needs and criminal justice issues | National Autistic Society)

The participants of Dr. Kapp’s study noted that while they saw their stimming in a positive light, the harsh judgment of others causes a lot of harm. And suppressing stims causes further distress as the autistic person is now expending cognitive energy to keep the lid on her stims in what’s already a very stressful situation.^[8]Stimming, therapeutic for autistic people, deserves acceptance | Spectrum News^[9]“People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming

To me it [ABA therapy] was abuse, because stopping those children stimming when they’re trying to calm themselves down or cope with a situation [is cruel], because even if they manage all the environment around them, there might be situations that they find stressful, and if they haven’t got the ability to calm them down, then they could be relying on other people for the rest of their lives or have a breakdown… (Rose)

I remember as a child spinning all the time and loving spinning and loving swinging and feeling that movement all the time, but then I also realised that there was a point where it wasn’t acceptable to be spinning anymore … so it actually still feels glorious if there’s nobody around and I can skip or I can spin and it’s like I’m breaking the rules. (Sinead)

Moreover, the lack of awareness around stimming can lead to terrible outcomes. Autistic persons of color (and especially black autistics)—as a group—are disproportionately hurt or even killed in interactions with authorities.^[10]Autism: sensory needs and criminal justice issues | National Autistic Society^[11]Black, autistic, and killed by police | Chicago Reader^[12]My son is black and has autism, and I’m terrified

Get stimmy with it: finally validated, finally heard

Although we’re not yet at a place of mutual respect in society, the winds of change seem to be blowing—generating lift for our tired, flappy wings. The following anecdote demonstrates why we should be hopeful for what the future holds.

Dr. Michael Bakan, a musician and Professor of Ethnomusicology at Florida State University, organized a small program, the Music-Play Project, which eventually grew into a band called the Artism Ensemble. This band was comprised of autistic children, their parents, and local musicians.^[13]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014) Their talents and instruments were as varied as their neurologist; instruments such as the guitar, zheng, and didgeridoo were employed by the ensemble.

And then there was Zolabean (her stage name), a virtuosic and particularly stimmy young girl.^[14]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014) Zola was known for taking the lead and creating impressive compositions. She was a natural talent. However, Dr. Bakan noticed that she’d stopped playing and would stay by herself, stimming to the music while the rest of the ensemble played.^[15]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014)

Concerned, Dr. Bakan and others encouraged Zola to join in on the playing. She’d tepidly play an instrument for a moment before returning to her stimmy introspection. Still, she wore a smile all throughout. This confused Dr. Bakan because, in his neurotypical mind, he couldn’t grasp why she suddenly stopped playing in favor of stimming. Yet the only time Zola appears to be unhappy is after someone coaxes her to play an instrument and join the others.^[16]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014)

This trend of concern and encouragement continued until one day, after the session ended, Zola and her mother confronted Dr. Bakan. Zola’s mother explained to Bakan that her daughter was stimming in a “positive way”. Zola’s so infatuated with the music that she felt compelled to flap her hands, pull her fingers, and pace around the room.^[17]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014)

Later, Zola explains to Bakan the reason behind her stimming:^[18]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014)

During the Artism project [Zolabean trails off mid-sentence, pauses thoughtfully, then shifts gears and resumes]—I have characters in my head. I think about them a ton, like probably more than I think about my own life. That’s fine with me because they kind of relate to me. A lot of them have similar diagnosises. [sic] (Zolabean)

Zola went on to explain that these characters have their own ensemble in her head, each character playing a different instrument. She stims in tangent with this cognitive concert until they all meld to form into one person: her.

The result of her mental ensemble is a new composition. Zola then passed on this composition to her bandmates and led them in performing it. One such composition was her rendition of A Hard Day’s Night by The Beatles, a crowd favorite.^[19]The musicality of stimming: promoting neurodiversity in the ethnomusicology of autism (Bakan, 2014) You can see the performance in the video below.

Zolabean’s story shows growth, understanding, and the incredible gifts autism often endows people with. Although misunderstood initially, Zola found a receptiveness and compassion to her atypical way of interacting with the music. And from this understanding came a beautiful composition, friendship, and validation. Her stimming, and therefore a fundamental part of her identity, was recognized and respected. She was finally heard and not just seen.