Autism Awareness Month: An introduction to stimming
Updated: Apr 15, 2021
Mackenzie Siders is a childhood friend and this past November, she joined me on the podcast, Two Kids and A Career. In Episode 53: Don't Let An Autism Diagnosis Swallow You Whole, Mackenzie talked about life as a mom of two kiddos with autism. I asked if she would write a series of blogs for Autism Awareness Month. Here's the first one:
April is Autism Awareness Month, symbolized by the jigsaw puzzle piece and the hashtag #lightitupblue. The purpose of an “awareness” campaign is to educate and inform, to help the general public better understand the disorder, and to be better equipped to interact with and help those members of our society and their families who live with it every day. But autism is unpredictable and difficult to describe, much less understand. Our popular perception of autism has been shaped by media depictions that exaggerate certain aspects of the disease, such as Rain Man, or conflate autism with other developmental disorders.
I am a parent of two children with autism. When my boys were diagnosed six years years ago, I went into a panic-induced Internet research tailspin to find somebody – anybody – who could tell me what that meant. There is no shortage of articles on the Internet but sorting through them to find practical advice proved impossible. Most of the content I found was either generalized clinical material trying to present facts, or personal stories about specific children. Neither fit my need to understand my autistic child.
That’s why I’m writing this series of articles. Maybe you’re the parent of a child recently diagnosed with ASD. Maybe someone close to you has autism, or has a family member with autism, and you want to understand how that affects his or her world. Maybe you want to learn more about autism because you want to help your kids understand peers in their classrooms who have autism. Maybe you just want to understand how you can be helpful, respectful, and a friend to others in our community who have autism.
Whatever the reason, I’m grateful you’re here and want to learn more, and my goal is to present practical and useful information to you in bite-sized pieces.
I feel that full disclosure is in order now, to give you some sense of where I’m coming from - what I am, and what I definitely am not.
I am a mom of five children, three of whom have special needs. My two boys both have ASD (among other things), and my daughter has severe ADHD, dyslexia, a diagnosed language impairment, and depression and anxiety. I also have two neurotypical children. “Neurotypical” or “typical” means basically the same thing as “normal,” but it’s a more respectful way to characterize children in the world of developmental disorders without stigmatizing those with special needs.
This is where you say, “Oh, wow, you must be busy!” and I say, “YES, IN FACT I AM” through a wild-eyed, toothy smile, while I pick muffin crumbs out of my hair and retrieve a dozen mismatched, abandoned socks from seldom-visited corners of my house.
This modern work of philosophical insight is on point:
I have never shied away from my sons’ ASD diagnoses. I feel very fortunate to have children with manageable, though sometimes challenging, symptoms, and I try to embrace these aspects of their personalities. I am always looking for simple, relatable ways to help those around them - relatives, friends, teachers, and peers - understand their daily struggles.
What I am not is a credentialed professional with respect to ASD. I have had the opportunity to spend an enormous amount of time working with well-educated, licensed professionals who have treated my kiddos, but I myself do not have any clinical degrees or certifications in this area (I do have an MBA, and I can tell you why your business idea for a chicken-flavored bone broth iced coffee is awful). Everything I am going to share with you is the product of my experiences raising three special needs children.
With that background in mind, one of the most important lessons to take away is that there are as many variations of autism as there are people with autism. Autism is a spectrum disorder, which means it includes a range of symptoms from kids who can come across as quirky and chatty to severely disabled children who cannot independently manage basic self-care. Although some disorders have common, measurable characteristics, every case of autism looks a little different, and part of learning about autism is learning to have the humility to understand that you don’t know what any given family with an autistic child experiences.
To get your arms around this, let’s start with a common autistic behavior referred to clinically as “stimming”. Stimming refers to self-stimulating behaviors, usually involving repetitive movements or sounds. Frankly, we all stim in various ways. Hair twirling, bouncing a leg, tapping a pencil, nail biting, and knuckle cracking are all forms of stimming (I’ve also repeatedly petitioned the American Psychiatric Association to recognize compulsively ordering Thai delivery at 11:30pm on Tuesdays as clinical criteria for a mental disorder but - so far - no dice). But, when people with autism stim, they might do it in ways that are obvious and less socially accepted—like hand-flapping, rocking back and forth, or repeating sounds or phrases. Stims are very helpful to recognize because they’re often the first (and sometimes the only) outward sign that a child is on the autism spectrum.
When therapists were first working with my son, Charlie, he was just a baby - only 18 months old. When they noticed him stimming and commented on it to each other, my instinct was to fix it; somehow, I had to get him to stop. Even now, I’m acutely aware that these behaviors are odd and noticeable to others. But, over time, I’ve learned that stimming is his way of calming his brain and his body when dealing with his unpredictable world. In some ways, autism is about not being able to anticipate or understand what’s about to happen next, even when there are obvious clues or inferences that the rest of us naturally pick up on without even thinking about it.
But for Charlie, it’s not at all obvious what is going to happen next. Think about how you feel when you are thrust into a completely new situation and you are the only one who has no context for what is going on and no general knowledge that could give you a reasonable guess about what will happen next and what is expected of you. The best analogy I can think of is attending an unfamiliar religious service for the first time where everybody else clearly knows what is going on and why, but you don’t. This type of situation is, at best, uncomfortable for most of us, and potentially a source of significant stress.
This is what every moment is like for my Charlie. His world often doesn’t make sense to him and he can’t anticipate what will happen next. Most events, no matter how logically they flow, come as a complete surprise to him, which is why routine is so important to autistic children and why disrupting that routine is so traumatic.
This is also why Charlie’s stims are so important to him. They give him temporary relief in a world that presents him with near constant uncertainty and anxiety. He knows his stims. He knows how they start, how they proceed, and how they end. Going through them imposes some predictable order on his day.
Although stimming is ultimately harmless, there are downsides. Some stims can be disruptive to others in certain settings, like the classroom. As his mom, I try to teach him when it is and isn’t appropriate to stim to minimize any disruption both to him and those around him. When we’re at home, I’ll let him stim to his heart’s content because, for Charlie, it just feels good to chug around making train sounds or trace the lines of the furniture throughout our house. Giving him that freedom makes it easier for him to restrict those behaviors in less-flexible settings.
Another downside of stimming is that, when done in public or other shared social settings, the behavior can be highly stigmatizing. Especially with children, this can lead to misunderstanding, fear, labeling, and bullying. Even in the best circumstance, where a compassionate child attempts to interact with a child who has autism and is stimming, the outcome will not always positive. This is why it’s so important for others to recognize these behaviors and learn how to have a mutually enjoyable exchange. You can initiate a conversation by first saying that what he or she is doing looks fun and can you (or your child) join them? This may or may not result in a meaningful interaction but the effort is huge. This effort, coupled with good and humble intentions, can make a substantial impact on both the child and the parent and will be the true beginning of awareness. There is no substitute for being genuine and coming from a place of love and acceptance.
Sadly, an extreme form of self-stimulating behavior can cause a person with autism to self-harm, such as excessive scratching or head-banging. My boys have had very mild self-injurious behaviors which are often easy to mitigate so I don’t have extensive personal experience with this issue. This is perhaps one of the most difficult and heart-breaking symptoms of autism. Caregivers who are working to control or extinguish this behavior should be given all the space and the grace they need.
In my next article, I’ll tackle Emotional Dysregulation as well as bemoan the total lack of Xanax in the water supply. To tantalize you with the juicy nuggets I have in mind for the rest of this series, future entries will cover the topics listed below:
· What does treatment look like for a child with ASD? Can someone PLEASE dumb it down for me?
· The importance of mental health, AKA Am I okay? Do I have anxiety? Should I join a wine club? Is seven too many dogs?
· What can I expect from my friend who has autism? I’m patient and understanding … but am I patient and understanding enough?
Mackenzie is a SAHM to five beautiful, hysterical, annoying-as-f#@k-sometimes kids. She worked so super hard in her twenties to earn an MBA only to retire and become her kids’ bitch. Now she spends her days dashing into the fray and taking power naps. You can catch her tossing quarters into her swear jar on her blog Mommy Needs A Swear Jar and on Facebook. She is confused by Twitter.