As I read more writings by autistic people, listen to more autistic voices, and try to understand the experiences of autistics, I find myself fluctuating between feeling like I totally empathize and relate, to feeling like I must not really be autistic at all because I don’t have the same kinds of feelings and experiences as these other autistic people. Through writing, I am reflecting on so many little moments that are embedded in my memory, and comparing them to what I now know to be the characteristics of autistic people. This process is illuminating. In this series of posts, I will explore different autistic characteristics and how I understand myself within each of them.
Meltdowns
One of the more commonly known things about autism is that autistic people have meltdowns. Sometimes they are physically frightening; people hurting themselves, screaming, writhing, hitting their head against the wall, pulling their hair out. In the words of one autistic man, “My meltdowns tend to be violent. Things get broken, walls get punched, words are screamed out loud that aren’t true, one time I even broke the passenger window of our car with my head. Thousands of dollars’ worth of damage has resulted from my meltdowns...”1
When I was in my early 20s I worked at a school for autistic kids with high support needs. Most of them were also labeled as “EBD” - emotionally and behaviorally disturbed. They had meltdowns similar to the description above, and that has always been my frame of reference for what an autistic meltdown is, and part of why I never thought I could possibly be autistic. I don’t do anything like that. I don’t lose control of my body so severely. I don’t lose the ability to respond rationally to a calm voice reassuring me. Does that mean I must not really be autistic? As I write my way through memories, I realize that I do have meltdowns, and they have the same triggers that trigger other autistic people. They look different, they manifest in different ways, but they are happening.
Memories of my childhood replay in my mind. There was the time I smashed my hand through the window of the front door when my brothers locked me out of the house, or the time I flipped over the coffee table while my family was watching TV (for no apparent reason other than I needed to let off some steam), or the time I punched my friend Blake in the stomach because I couldn’t take the sound of the words coming from his mouth (if I recall, he was saying “nerd turd” repeatedly with an obnoxious smile on his face). But those were rare, and I don’t think they were manifestations of autism; they were just the normal angst of growing up.
I have episodes, but I’ve never thought of them as meltdowns. My brother once described it, when he saw it happening, by saying, “He’s done. He’s just done.” That means I am going to leave the party and go to bed. And I’m not going to wait for anyone to get their coat or say goodbye. And if I don’t leave, right then at that moment, I will start to lose my composure. I’ll say obnoxious things, I’ll lash out, I’ll get a look on my face that tells people not to try to talk to me. My wife usually takes a long time to leave a crowded room. In these moments, I don’t have patience for her to say goodbye to so many people, to have those last few moments of community and dialog with others. I insist that we leave right this instant, and the idea of saying goodbye feels so artificial and “performative” - why bother, really?
A colleague of mine, an HR professional who had been observing the dynamics of my peers and I interacting, described it by saying, “You are really patient. Until you’re not.” I knew what she meant. There is that point that I reach during long meetings (the kind of meetings that go for entire days). The point at which I send the signals that I am losing it. I get irritated, frustrated, annoyed. I start saying things that would be considered rude in most work contexts, but that people I’ve worked with for a long time have come to accept as my dry and biting sense of humor. In those moments I need to stand up. I need to do something physical. I need to leave the room, go for a walk, scream, throw something, or slam my fist down on the table. But I keep those urges hidden inside my head. Maybe I flex my hands or squeeze something. Other than a change in my attitude you wouldn’t realize that I’m having a meltdown. If that’s what it is.
If the meeting wraps up and I am released, I will be OK. If it looks like the meeting has no end in sight, I excuse myself to use the restroom and try to collect myself in the hall. If I feel like I can’t leave, or I just got back from the restroom a few minutes ago, I try to mentally buckle up and prepare myself. I try not to sabotage the rest of the meeting. I try not to ruin it for everyone else, all the while wondering how they can stand it. How can they all put up with such idiocy? With such a mundane and stupid waste of time? How can we justify having ten people who collectively are paid an ungodly annual salary sitting in this little room having this ridiculous conversation instead of getting some work done? Am I really the only one who feels this way? Who can see this for what it is? People! There is no point in this! Let’s release ourselves and go do some work, or at least move on to the bar where we can have some drinks to dull the pain.
(During the past 18 months of not traveling for work, not having all day meetings, not having dinner with my colleagues, I’ve come to realize how hard those trips were for me to manage, and how much I used alcohol to cope. Alcohol works pretty well for me. Without it, the idea of moving from an all day meeting with my colleagues, to an extended dinner with the same colleagues, with only the walk from the office to the restaurant in between, fills me with anxiety and dread. How can I escape? Without alcohol I think I would have more severe and noticeable meltdowns during these trips).
Now that I am exploring it, I guess I do feel the urge somewhat frequently to break something, to throw something heavy onto the floor, so that it makes a loud thud, to kick something, or to wring something with my hands. It happens when things get to be too much. When too many people are talking. When people are asking me questions and I don’t feel like engaging. When there is noise. When things are messy. When there is a crowd. But I don’t smash my head against the wall. If I’m only with my wife and daughter, I’ll express it more. I’ll shout for people to be quiet. I might slam something. I’ll be visibly upset and it feels a little scary and out of control. If others are around I suppress those urges more. The shame and embarrassment of my behavior in front of anyone but the people closest to me keeps my meltdowns in check by turning them inward. I mostly shut down and disengage. I’ll also become rude and somewhat unpleasant. Dinner guests who experience this will not want to come back to our house for dinner anytime soon.
Is this why I’ve always gone for long walks? Is physical exercise the way I’ve learned to channel my need for a meltdown into something socially acceptable? As a kid I would lash out at other people, or at objects. Then l discovered music and started going into my room, turning up the music ridiculously loud, and singing along to the lyrics as if nobody could hear my wavering voice above the stereo (but of course they could hear it, and they made fun of me for it). The music and the singing were my release. Then as a young adult I discovered running, and walking, and I would set out for miles and miles. Sometimes I would walk all day, on those days I had nothing to do (which was most of the time). People close to me know that if I don’t exercise, if I can’t do my morning ski, or my morning run, or go for a very long walk, that things will get bad. I’ll be grumpy and irritable, rude, unpleasant to be around. I’ll act like a jerk. Is that because I’m having a meltdown? It’s always been this way. I remember in 2003 on a trip with my girlfriend to visit her extended family in Chile. Big trips like that are when routines get interrupted and things are hard. She would say things like, “You should go for your walk now” because she knew that I needed to do it, and she also knew I would be too shy to tell everyone that I needed to do it, and that “going for a walk” in the place we were staying was not exactly a normal thing to do. She wanted me to go for a walk not for my sake, but for her sake and the sake of everyone else, to spare them the experience of being around me when I hadn’t had a chance to go for my walk.
And big stores. Being in big stores, especially when they are crowded, has always been hard. I’ve spent most of my adult life avoiding them, though I don’t think I consciously realized it until I started reading about autism. I used to do all my grocery shopping at small co-op markets that I could walk to in my neighborhood. A lot more expensive, but good food and so much smaller. So many fewer people. Lights that aren’t as bright. No voices on the loudspeaker. No giant parking lot. I don’t live near a co-op now, so I shop at Whole Foods. It’s not unpleasant. The ceilings are high, the lights are tasteful, the isles are wide, and there is no loudspeaker. I get there a minute before they open on Saturday morning. There are never more than a few other people shopping. I have a list. I have a plan for how to navigate the store. I move quickly. I get out as soon as I can. If something goes wrong, like they haven’t restocked the items I want yet, or there is only one open checkout and it's a new person and they are really slow, I start to get a little panicky. My heart beats faster. I feel my muscles tensing. I feel the wave of irritation washing through my body. But I never thought this was unusual. Doesn’t everybody feel this way? I could never understand why everyone doesn’t go to the store at 8:00 AM on a Saturday, but I’m just glad they don’t.
I recall a trip to Ikea with a young woman I was dating in my mid thirties. She felt that my apartment was too spare and needed some decorations, including curtains and couch cushions. In the car on the way home I was feeling that the trip had been relatively successful - we got what we came for. I also felt certain that I never would have gone if she hadn’t taken me. So, we accomplished something. It was good, it felt productive. We sat silently in the car while I navigated the freeways, and I was surprised when she broke the silence by saying, in a very gentle and loving voice, “Well, that was really unpleasant.” I looked at her questioningly, wanting more explanation other than the obvious Ikea is a very unpleasant place to be. “You were really rude to me. This whole trip is for me to try to help you. And you were yelling at me. And rushing me. And just, I don’t know, being a jerk.” Huh. I was? I hadn’t realized it, but as she catalogued the moments where I lost my temper, the moments where I said things most adults would consider unreasonable and unnecessary (like shouting, “I don’t care which curtains we get. I don’t even want curtains. The only reason I’m even getting curtains is because you want to sleep late and you don’t like the sun coming in. I’m doing this for you. Jesus just pick one and let’s go!”), the moments where I was behaving like a child having a tantrum, I couldn’t disagree with her conclusion that I was a jerk. I guess that was a meltdown? That kind of thing used to happen all the time. The worst moments of any relationship I’ve been in have occurred in big box stores, airports, traffic jams, or situations of high stress (like the moment when you are looking at a house and need to decide whether to make an offer).
That kind of thing still happens, but not all the time. I control it not by doing anything that makes those situations easier for me to handle, but simply by avoiding those situations all together. Well before the idea of autism ever occured to me, I had become more comfortable allowing myself not to get into situations where I end up “acting like a jerk” (what I would now call having a meltdown). This is possible because my wife is so understanding. She does all the shopping at the big box stores. She doesn’t get upset when I say I don’t want to go to the State Fair. She understands when I want to stay home and rest instead of going with her to her mom’s house to swim with our daughter in the pool, or to go have a playdate with her cousins who are visiting from out of town. It wasn’t until the last few years of my life, in my forties, that I began to do things to make my life more pleasant and manageable. And it wasn’t until I met my wife that I had ever dated someone who seemed to really like me for who I really was, rather than who I was pretending to be.
I’m thankful that I’ve come to where I am, and now that I have the knowledge how my brain works, I can finally make sense of how I navigate the world and why I act the way I do.
https://neuroclastic.com/my-problem-with-autistic-meltdowns/ accessed Sept 2, 2021