Autism Awareness Month: What is emotional dysregulation?
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 second one:
This is the second article in a series that I am writing for Autism Awareness month. If you missed out on my first article, you should definitely check it out. It will give you background information on my experience with autism, discuss stimming (a common behavior in people with autism), and offer practical advice for having a meaningful interaction with an autistic person who is stimming.
Today, I’m going to dive right into another commonly misunderstood symptom of autism: emotional dysregulation. We all experience a wide range of emotional responses in our daily lives, and sometimes we all get angry or upset. However, most of us have the ability to control, or modulate, our emotions, and there is a generally accepted range of emotional responses for a typical person. Emotional dysregulation is a term used to characterize emotional responses that are not well-managed and fall outside of that typical range. Behaviors such as temper tantrums, shouting, throwing or breaking things, and aggression towards others (or even oneself) are examples of emotional dysregulation.
You are probably familiar with the concept. If you’ve spent any time around a toddler or a teenager, or anybody born before to 1997 trying to do common core long division, you have seen an emotionally dysregulated person.
When emotional dysregulation appears as part of a diagnosed neurological disorder, such as autism spectrum disorder (ASD), it typically involves a heightened sensitivity to ... well ... everything, and a reduced ability to recover in a reasonable amount of time. Simply put, the emotional outbursts are more intense, prolonged, often vastly disproportionate to whatever triggered them, and may require intervention from someone who knows what they’re doing.
It is important for you to understand that these emotional reactions involve a bunch of neurological and physical functions over which people with ASD have little control. People with ASD are often impaired by various sensory and cognitive challenges that inhibit their ability to manage their emotions. These include:
▪ Delays in recognizing and processing sensory information
▪ Inability to predict or understand what comes next
▪ Increased sensitivity to noises, lights, and/or unusual events
▪ Difficulty reading someone’s tone or facial expressions
▪ Trouble coordinating gross (walking and jumping) and fine (picking up small items or feeding yourself) motor actions
A deficiency in any one of these can quickly become overwhelming and generate an unmanageable amount of stress and anxiety. Making things worse, these sensory and cognitive perceptions can trigger basic survival instincts, such as the “fight or flight” response. When that happens, your rational cognitive faculties - your thinking brain - isn’t making all the decisions anymore. Instead, you are under the influence of your lizard brain: a brain structure called the amygdala, which is basically a powerful central fear processing computer in your noggin that takes over in stressful situations to quickly prepare the body to emerge victorious in an apocalyptical thunderdome battle to the death. As you can imagine, these are not circumstances conducive to calm deliberation and your ability to rationally consider the consequences of your actions quickly evaporates into a red haze of irrational fury.
For example, you know that feeling you get when you’re pulling up to Target and there’s just one person about to enter the crosswalk, so you stop and smile and wave him on because the high temperature today is only, like, 52 degrees and he isn’t wearing a jacket, and you’re so proud of how super thoughtful you are in noticing all of these details and being courteous. But then it takes him forty #%(#*^(&!#(% minutes to travel eight feet while he’s staring down at his phone. As you watch him plod along, you are consumed by a dark and righteous inferno of incomparable rage that radiates off of you in waves, warping the glass of your windshield, causing your eyeballs to sweat, and making dogs howl and children weep? Yep, that’s the fury to which I am referring.
We’ve all seen that kid who looks like the Tasmanian Devil on cocaine: screaming, wailing, maybe swatting at the parent, stomping around, destroying things. It can be really difficult to tell when a child is having an ASD-related meltdown or is, frankly, just being a dick; because kids can absolutely be dicks. I have twenty years of anecdotal evidence to support that claim. But, these experiences have also helped me learn how to distinguish between the two and that knowledge, that insight, is what I hope to share with you.
After a morning full of therapy wins and brimming with temporarily inflated swagger, I’ll take my little man to the grocery store to practice some of those skills we’re working on – life skills, like walking next to me instead of charging through a Cheez-its display like he’s the Kool-Aid man. It starts out well enough; he’s helping me put items into the cart and I am looking for opportunities to have him engage with a fellow shopper to share his name and say hello.
Then I shop too long and the overwhelming sensory input takes its toll on my little guy: the lights, sounds, and smells of a busy store, the random people coming and going, strangers stopping to chat with us, the beeping of the scanners, the crash of shopping carts, and even the expectation that he sit in a cart or walk next to me for an extended period of time. Eventually, it’s all just too much. By the time I enter the checkout line, Charlie begins to short-circuit, and the threads of my carefully woven plans all unravel at once into tatters.
At first glance, it can appear as though he’s a typical child who’s not getting his way. This naturally triggers the sympathies of well-intentioned strangers, who often stop to assuage or reassure him. This never, ever works. Instead, the situation escalates quickly. He’s overwhelmed. From a sensory standpoint, the grocery store is a drink from the firehose experience. Every one of his senses is being bombarded with information and adding an unfamiliar face to the mixture is just throwing a tank of propane onto a tire fire.
Practically speaking, your best course of action is to give me the benefit of the doubt and assume that I’m doing the best I can in a temporary situation where the only real salve is taking the time and space to de-escalate the situation, which isn’t always an option.
These moments are stressful for the parent as well. My child is in distress and I need to help him but I’m up next and it’s time to put my stuff on the conveyor belt. Obviously, I’m well aware that people are staring, sometimes whispering remarks they think I can’t hear, and offering unsolicited moral proclamations about the quality and worthiness of my parenting. Moms, I’m talking to you here because – not sure if you know this – a Compulsive Guilt Complex comes standard when you’re issued your vagina (it’s in the manual after the section titled “Everybody But You is a Petty Bitch”).
If I cry, as I often have in these moments, what I need is patience, reassurance, and a little space. But, I understand that some people simply cannot stand by and do nothing when they see another person struggling. If you feel absolutely compelled to help, the best thing to do is keep your distance and quietly ask if there’s anything I need. That small but respectful gesture could be the shot of kindness we all desperately need when we find ourselves in that moment, whether or not our child has ASD.
It’s important to note that a child with emotional dysregulation doesn’t always just flip out. My older son, Hayden, who has higher-functioning ASD, tends to shut down when he feels overwhelmed. The first time I noticed this, we were at Disney World. We rolled into Magic Kingdom with two double strollers and four children. Three of them were so excited by all of the interesting things happening, but the fourth child put his head down and closed his eyes. At first, we thought that maybe he was sick. No amount of talking or comforting could ease the anxiety he felt. At the time, I was still very new to the autism world and I didn’t realize until months later that Hayden has vastly different sensory needs and aversions than Charlie. I will tell you that this feeling Hayden had at Disney did not get better with age and, eventually, he did start taking medication and still takes it to this day. He would be paralyzed by everyday sights and sounds if he wasn’t on medication. Even with the medication, he will sometimes wear noise-canceling headphones to muffle the noises that feel like an assault on his adorable little ears. Interestingly, he also enjoys the pressure he feels from the headphones pressing against his head. At one time he had a compression shirt that he would wear under his regular shirt because that tightness around his body helped to calm him down. Hayden’s sleep also greatly improved when he started using a weighted blanket (my husband too!). I have two sons with the same disorder and the emotional dysregulation triggers are as different as they are and even vary by situation and circumstances.
Finally, let’s talk about you and what you need. What you need is to celebrate an American pharmaceutical tradition - that is legit AF and definitely not made up - known as Xanax o’clock.
Unlike happy hour, which tends to happen in the late afternoon, Xanax O’clock happens exactly when you need it. For instance … after you discover that somebody (not you) has, instead of depositing their poopies in the toilet, dropped his pants, pressed his butthole up against the wall, and then done the Iggy Shuffle down the hallway, leaving a long smear of caca for you to discover later. Half a xanny won’t wash the wall but it will make you not give a shit and is the equivalent to two glasses of wine, minus the calories and the hangover.
Don’t be a hero, lady.
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.