My son and I were having a magical day at the Renaissance Faire after what had seemed like an endless Los Angeles winter, which in most years is an oxymoron. It was the kind of day when your autistic son takes on an Old English accent as he’s knighted by the Queen, then stands before a crowd of inebriated 20-somethings, egging them on in the “Joust to the Death.” A rare show of extroversion in his otherwise screen-glued world. He was totally in his element, absorbed in history, immersing himself in the joy and debauchery of a masquerade ball.
“I gotta hand it to you.”
“That’s your son, right?”
“I gotta hand it to you.”
A part of my heart sank, and another part burned. I was abruptly transported from a moment of pure elation back to the stark reality that the world is still seen through neurotypical glasses. To this Faire-goer, my son’s expressions were so out there that I needed him, a stranger, to praise my parenting. His intentions were undoubtedly kind, but they were nevertheless a stark reminder of how far the advocacy world has yet to go.
The “I gotta hand it to you” comment was prompted by my son’s “stimming,” which had caught this man’s attention and compelled him to offer his unsolicited “support.” My son has a means of self-expression common to autistic people that involves rubbing his nose and making sounds. When he was little, we started calling it “the happy squirrel” because it looks like, well, a squirrel enthusiastically enjoying a nut.
Stimming (or self-stimulatory behavior) signals a range of emotions, from distress and exhaustion to excitement and joy. For my son, it usually signifies something amusing, engaging his wily sense of humor. Around the age of two, he also discovered the joy of shaking colored string before his eyes, delighting in the kaleidoscope of infinite patterns. Over the years, the string morphed into yarn and took on an array of shades and thicknesses, and piles of it are strewn around our home.
Stimming can be a form of self-regulation, blocking out sounds, or simply expressing emotional stimuli too powerful for the nervous system to contain quietly. Autistic adults describe it as a way to relieve pressure, a self-soothing comfort that provides joy and release. Stimming can involve any of the senses and has as much creative diversity as autistic people themselves.
It’s taken time for my husband and me to get over our discomfort with the sudden eruptions of sound and the startled, judging glares from onlookers. We used to worry about my son’s stimming looking weird or making him stand out as a target for bullies. But why should he suppress who he is when others can be more informed around him?
The therapeutic community has historically geared treatment toward suppressing stimming through behavioral interventions. When our son would stim, his therapists instructed us to tell him to breathe, to give him firm pressure, or search for the underlying feeling. We avoided the “gold standard” therapy called ABA, which espouses rewarding children for subduing their stims to coerce their behavior to look more neurotypical. There are now an enormous number of testimonials addressing the harm and trauma caused by this approach. The neurodiversity paradigm shift is essential because it supports autistic people as they are and implores neurotypical people to bridge the communication gap.
The Renaissance Faire-goer’s words that day were meant to be kind and supportive. But because of the lack of understanding of what stimming is and what it means, they put a dagger into my celebratory mood.
When my son is stimming, my husband and I have learned just to let him be, unless he’s in distress and needs comfort. Because just as you wouldn’t demand that a child stop laughing or crying, please don’t tell an autistic child to stop stimming.