The most embarrassing moment of my life took place on a carribean cruise. We were just about to arrive in Jamaica, and I had spent the past 24 hours getting told horror stories by well meaning relatives about how dangerous ports could be and how we had to stay together. Problematic advice aside, this was on top of a full week of being confined in a crowded, loud, overstimulating place with no normal coping mechanisms.
So I broke. Repeatedly. In front of my entire extended family. The worst one was when, while trying to get food with my mother, a loud noise caused me to panic and scream at the source to “SHUT UP!”.
It was a baby. I screamed at a literal newborn in public. To the outside world I looked like a lunatic, but inside something a lot more complex was happening. Something I didn’t yet have a name for: the Meltdown.
Autistic meltdowns go by a lot of different names, many of which are pretty derogatory: autistic rage and regression are two of my least favorites, as they imply a deliberate malice or a sense of the subhuman. Some people mistake them for temper tantrums, which they can definitely seem like in children. I always thought they were panic attacks, which isn’t inaccurate. They came on suddenly and I was definitely panicked, but other people had panic attacks without screaming at infants. Why was I different?
The thing I didn’t realize at the time was that meltdowns are a manifestation of the ‘fight or flight’ response; the same physiological reaction that we rely on to save ourselves from potentially deadly situations. The difference is that, for people with sensory processing issues like I have, things that seem totally innocuous can also trigger the response. However, and this is important to realize, it’s never just one thing that triggers it.
On that cruise, I was subjected to many, many triggers, including…
- Being in a crowded, confined space I felt like I couldn’t leave.
- Being subjected to constant sensory stimulation, like music, harsh lights, and (in one bizarre case) a random Madagascar dance party.
- Disruption of my normal routine.
- Lack of access to typical coping mechanisms (like my laptop, which was left behind in the interest of saving luggage space).
- Picking up on the travel anxiety of my extended family.
But most importantly, for my case anyway, was the issue of masking.
Masking is something that neurodiverse adults have to do constantly. Children also have to mask, but atypical behaviors like stimming, echolalia, and aversion to eye contact are more acceptable in children. Adults need to pretend to be neurotypical if they can help it, lest they face uncomfortable social consequences. The issue is that this is exhausting. Do you know what it’s like to have a “work” persona and a regular one? It’s like that, except literally all the time. Surrounded by both family and strangers as I was, I had to keep the mask up for a week straight. Pretend I wasn’t bothered by anything. Eventually I just couldn’t do it anymore. I lost control, and all the stress and anxiety of the week boiled over at once.
I had to get out, to get away, but I couldn’t. One of the most common coping mechanisms for meltdowns, and one of the most effective, is simply removing yourself from the situation. In children, this manifests as bolting, or running away from the stimuli. Adults can usually politely excuse themselves. That’s part of the reason why this situation took me so off guard. Ordinarily, I could just excuse myself, so the full on meltdown phase never actually occurred. Not in this situation; my aberrant behavior was upsetting to my family (who, not knowing what was going on, thought I was throwing a temper tantrum in my mid-20s), which only exacerbated my anxiety. The ship was also fully booked for Thanksgiving, which meant no place I had access to was really quiet. I couldn’t even use the elevator without encountering nearly a dozen people. I remember desperately asking a crew member for a place I could cool down, explaining everything I could with the last vestiges of lucidity I had, only to be awkwardly told to go to my room. You know, where my mother was waiting to scold me for yelling at an infant.
Eventually I ended up clawing my way up eight flights of stairs, finding a quiet corner of the ship’s small library, and hiding for a few hours. I felt miserable. I knew how ridiculous I looked. I knew how awful what I did was. To the outside, it looked like a grown man had thrown a temper tantrum, but on the inside I felt possessed. Like some outside force had overtaken me and turned me into a monster. That night, after I had regained my composure, I looked out at the pitch black ocean and wanted to jump in. How could I possibly be a functional adult if I couldn’t keep it together?
I didn’t learn what had happened until I returned home. I made a promise I’d get on medication, but I also joined a support group for people on the spectrum that was offered by my college’s psychology department. There, I learned exactly what had happened; I was so overstimulated and stressed by the unfamiliar situation that the trigger of a baby’s scream had pushed me over the edge. In that instant, my body reacted like I was in danger and triggered my fight or flight response, leading to my embarrassing outburst and attempt to escape the situation. It was something that many people on the spectrum had to deal with constantly, but something I had never even heard of before. In fact, that was a running theme with my childhood treatment of autism. While I was given accommodations and medication, nothing about my condition was explained to me. Things as innocuous as stimming were discouraged. My dysgraphia led me to almost fail multiple classes (I was only saved by my typewritten content). I didn’t even hear the term “executive dysfunction” until I was old enough to rent a car. Not because any of this was willfully kept from me, but because the information just wasn’t available. Hell, one of the first pieces of autism related medical advice I received from an actual doctor was “don’t drink Coke, kid”, as if that would magically make me neurotypical. For a disorder that had been around as long as humanity has existed, learning about it wasn’t exactly easy. Now that I was an adult, the information was much more prevalent… but focused almost exclusively on children.
Like… come on guys. We’re the ones who have to live with it, not our parents. I know you care deeply about your special crystal children or whatever you call us, but it’s not like we magically know everything about our condition. This is especially difficult if you’re largely asymptomatic (or ‘high-functioning’, as much as I loath the term) like I am. I did well in school and didn’t need help feeding or getting dressed, so I was basically neurotypical in most people’s eyes.
That lack of knowing just makes the already traumatic event of melting down even harder to deal with. You start to wonder, “is something wrong with me? Is my condition worse than I thought?” Hell, you can’t even explain what is going on to your confused and concerned friends and family. You’re lost in the throes of panic, unable to express what’s going on because you don’t have the language for it. It’s a situation that can, and has led to serious injury and death.
Earlier this year, 13-year old Linden Cameron suffered a meltdown because of separation anxiety. His mother called 911, explaining there was a mental health crisis and that her son needed to be taken to the hospital. The police arrived instead. Cameron, who has Asperger’s Syndrome, responded to the situation by bolting. The police responded by shooting him in the back. He survived, if barely, but his story is far from unique. Because of the violent and erratic appearance of meltdowns, many people respond by calling the authorities… and the authorities often respond with violence. Either physical restraint that can lead to suffocation, beatings, or gunfire. According to a recent study, almost half of all people killed by the police in the United States have some sort of mental disability, with many of them suffering from a mental health episode at the time of their killing. As the shooting of Linden Cameron proves, this is a trend that transcends most demographics; if you have a bad enough mental health episode in the wrong place, you could get killed for it.
So, needless to say, I devoted a lot of time to figuring out just what a meltdown looked like and how to properly respond to it, and I’ve gotten fairly good at figuring it out. Like a storm, they’re usually preceded with warning signs. Internally, it’s building anxiety and discomfort. Externally, people might express distress, ask for a break, or try to flee the situation. In children, increases in stimming behavior are a common warning sign. These situations are more likely to occur during periods of high stimulation and uncertainty. If you sense a meltdown coming, the best thing to do is to excuse yourself and take a break. Find somewhere quiet. Sit down and drink some water. Hide in the bathroom if you need to. Once it starts, it can’t be easily stopped. It’s not like a tantrum where you can just turn it off once you get what you want; it’s an uncontrollable outpouring of emotion.
For parents and friends of neurodiverse people, if someone tells you they need a break, give them a break. Let them leave if they can safely do so. If a meltdown does happen, don’t try to physically restrain them (that usually just makes it worse), and don’t call 911 unless someone is in danger. A meltdown may look frightening, but it’s not usually an emergency, and police officers aren’t trained to identify and deal with them in many precincts. Instead, gently try to usher the person to a quiet area (verbally if you can). Stay calm, and let it run its course. Adults can almost always self-regulate to the point where getting to a quiet place is easy. Children tend to be more chaotic and can bite or kick if they feel threatened; consider keeping a fidget or distraction on hand for those situations.
Finally, just… try to understand. We really don’t want to be going through this either. As upsetting as it is for you, it’s about a thousand times worse for us. Responding with anger or shock will only make the situation worse. It certainly made mine more complicated; if I or my family had known what a meltdown even was, I’d have had a much easier time managing them. Instead I looked (and felt) like a psychopath. That’s not fun for anyone.
Oh, and as an aside… even if they advertise themselves as being “autism friendly”, I’d recommend avoiding cruise ships. Current pandemic aside, they’re just not great places. Maybe it’s the lingering trauma still talking, but I’ve decided to have all my vacations on dry land in the future.