What I've Learned About Stimming as an Adult on the Autism Spectrum

What’s Stimming Got to Do With Me

When I was a child and the world got a little too big, a bit too loud, I would take my nanny (my word for blanket) and cover my whole body. It was the type of blanket your granny would knit that looked like a checkerboard of muted green, yellow and white. I would escape the banter of my siblings, the barking of my dogs, the squabbling of my parents by counting the squares and rubbing them between my fingers. This soothed me; this was my place that was soft, familiar and smelled like Tide. At 42 that nanny sits in the corner of my bedroom most nights, no longer capable of shielding me.

Fidgeting Before It Was Cool

“You are so fidgety” was a statement I heard way too often growing up. I often needed a distraction or something I could focus on to help with my anxiety in social situations, occupy me when people got overly emotional, or keep me on task with homework.

As an adult, I have learned these were all coping mechanisms that allowed me to distance myself from reality. When I became a paraprofessional in a structured classroom as a 1:1 for a girl with autism, I learned the difference between fidgeting and stimming and realized I didn’t just fidget.

Hallmark Marker for Autism Spectrum Disorder (ASD)

The term “stimming” is short for self-stimulatory behavior. It is almost always a symptom of ASD. This is often the first outward sign others may notice. At its heart, stimming is a way to self-regulate.

Examples

• Any kind of repetitive movement; spinning, pacing, rocking, twirling, jumping etc.
• Spacing out
• Repeatedly raising and lowering eyebrows
• Hand flapping, “driving” your finger in front of your eyes
• Lining up or spinning toys
• Frequently flipping hair in your face
• Immediate or delayed echolalia (repeating of noises and phrases heard)
• Perseveration
• Unusual or inappropriate smelling and sniffing
• Covering and uncovering ears over and over

By now you may be wondering, “Do I have autism? Because I am pretty sure I stim.” I don’t know you nor am I qualified to answer. But don’t go self-diagnosing just yet. Stimming is common; we all know hair twirlers, pen cap chewers and feet tappers. People with autism often differ in the amount of frequency and necessity of engaging in the behavior. I will explain further when I talk about my stimming.

Not Everyone Has ASD

My least favorite response when people hear I have autism is, ”Well, everyone is on the spectrum.” These people fall into two categories for me. People who are ignorant and people who are undiagnosed with autism.

There are a fair number of people who are still in denial that I have autism. I believe this is due to a limited understanding of ASD and of me.

What Stimming Looks Like for Me

I repeatedly put my finger in my ears and rapidly move it back and forth, often until it bleeds. I have noticed a pattern of doing it when I am overwhelmed, nervous or lost in thought. For the most part, I wear my hair down since this partially blocks my access. My husband often has to prompt me to stop.

Sure, I can control the stim. But if you have ever had a mosquito bite, you know a fraction of how hard it is for me to suppress this urge. It is an amazing feeling at the moment, but I regret it when I can’t put my ear on my pillow that night.

Is There a Fix?

I have been reasonably successful at using a replacement stim in public. I keep my hands under the table during meetings so I can rub my fingers or my clothing if the texture is just right. If I am worried or bored, I find scrolling on my phone extremely satisfying. I am not necessarily looking at anything in particular, just scrolling. Occasionally a word will pop out at me, and I will say that for a little bit and then scroll on. Words like schematics, fidelity, trepidation bring me more enjoyment than they probably should.

Do I Find Stimming Beneficial?

Many times it helps me. For instance, my perseveration on researching topics of interest. This is of incredible value at work. I fixate on tasks I find rewarding. For example, if I focus on being the best recruiter I can be, I will stay up reading all the articles I can, listening to podcasts, and reading recruiters’ profiles on LinkedIn until I feel like I can surpass my manager’s expectations.

However, sometimes I will do this at the expense of sleeping, time with family members, self-care and housework. To a point, this makes me a great employee but eventually, I need something else to motivate me because I have satiated myself in knowledge and it no longer drives me. I am working on self-management skills. I have noted the more creative I can be the less perseveration occurs.

In short: Yes, stimming can be beneficial when managed.

To Worry or Not to Worry

In my opinion, stimming only needs an intervention if it:

1. Stops the individual from functioning in society (attending school, work, social gatherings, maintaining friendships etc.)
2. Becomes self-injurious (my poor bloody ears) or harms others
3. Disturbs sleeping, eating or maintaining daily hygiene

In my opinion, stimming should never be interrupted in these circumstances:

1. It is embarrassing to others
2. It is annoying to others
3. Others think it is not “normal”

Help Needed

You can seek professional help if you think an intervention is warranted. There are Board Certified Behavior Analyst (BCBAs) who are trained to help.

Disclaimer: Not all BCBAs are created equal.

In every profession, you will come across people who are not the right fit for you, and others who align with your needs. Research and get advice from people you trust before deciding on a specific type of therapy. Ultimately you will need to make the final leap of faith and of course be willing to work hard.