There I was at the office, sat at my desk. A normal day. Listening to music through my noise-cancelling headphones: some classic 90s Manchester tunes from the likes of James, New Order and Happy Mondays.Read more
“It’s not the end of the world,” my mum used to say as I cried inconsolably over something that most people would regard as trivial. Perhaps someone else took the particular cookie I’d fixed my eyes on, or the books I’d carefully lined up had been dusted and moved.
The thing is, when you’re autistic and you’ve got an idea in your head about the way things will be, anything which disrupts that expectation does feel calamitous. The certainty we were relying on has fallen in ruins. It literally is as if the world shattered under our feet.
When people try to console us by “putting things into perspective” it can actually make it much worse because they are demonstrating a lack of empathy: they’re projecting their perspective onto us, and it doesn’t match our experience.
For many autistics, having a predictable environment is very important. We need our routines so we can feel at ease, and when we go outside our usual bounds we like to know what to expect in advance: to be prepared. When I go to new places I research beforehand so I know the layout and how it looks.
I’ve learned to manage my expectations up to a point but I don’t always succeed, and when something doesn’t turn out the way I thought it would the blow can be crushing. The feeling is so intense that I can’t see past it and be objective. It might as well be the end of the world.
I’m sat here writing this and my focus is everywhere, darting around the room like a frantic animal seeking escape. I’m twitching, every little sound makes me jump.
So many sounds. There’s no escape. All outside my door here. All threatening. I’m terrified. I hear a bang (something dropped?) and scream! I’m alternating between holding my head in my hands and sobbing, and the rapid breathing of a panic attack.
My headphones don’t help. They don’t cancel everything. And even if they did I still feel the vibrations.
Literally. Every. Sound. I’m a receiver with the gain turned up way past maximum. There is no escape. No way out. I’m flapping my hands, I’m repeating, over and over and over and over and over and over, “Stop it! Stop it! Stop it!”
And it doesn’t stop. I know how this ends. I’ve been here before. This is overload. Population one. My needle is pushed against the stop and every tiny increment is testing the strength of the fuse. It will blow.
I don’t know when. Maybe not even today, but at some point it will go. And I will be in meltdown. I feel it: some elements are leaking past my barriers. I’m trying to suppress it because I have to keep functioning. I have to keep going at any cost.
And I know that’s foolish. I know that the longer I strain to delay the inevitable the bigger the crash. And I still do it.
I’ve reached a lull. A brief spell where I can let the tension I hadn’t even realised was in my body dissipate. When I can breathe slowly and deeply. When I can rebuild my strength ready for the next assault.
Sensory overload is not something you get to switch off when it’s inconvenient. It usually comes on with a vengeance at times of stress. Talk about kicking you when you’re down!
This one has been building for a long time. Over months. The stress is why I’ve referred myself for counselling. I can’t write about it, not now, not yet. I’m not able to face those demons today. But one day, hopefully, I will.
While I’ve written before about the trouble that led to a change of school at age 14, I’ve not ever gone into detail about that time because it still evokes strong negative emotions more than 25 years later. But tonight I’m going to confront some of my demons and open those locked doors in my memories.
It’s curious that the day after I wrote about violence in meltdowns I felt myself approaching one. This is how I handled it.
It was Tuesday morning and I was feeling tired after a poor night’s sleep. That in itself is never a good thing because it heightens my sensitivity to sensory stimuli such as bright light, loud or high-pitched noise and touch. It puts me on edge: I become liable to jump at the slightest disturbance, balanced on the cusp between holding it together and going into overload.
Well, I was a mess. Couldn’t concentrate on anything: the slightest disturbance grated. The noise of the air conditioning, people’s voices, vibrations in the floor as they walked by all contributed to my discomfort and I could feel that I was becoming more and more tense.
And then an alarm went off! Loud and high-pitched. I felt myself sliding into meltdown, the anger building as I began to feel the urge to lash out…
..but I was aware of all this. I realized how close I was to a meltdown and that realization slammed the mental brakes on. In recognizing my state of distress I had subconsciously triggered my learned coping strategies. My focus shifted from the external stimuli that were overloading me to instead observe my own body: I was breathing too fast, I was very tense. I began to consciously relax, the tension easing and the anger ebbing as I did so. My breathing slowed to a more normal rate as a result of the meditative technique.
And the alarm stopped. Bliss! Comparative peace at last. Until the fire alarm test sounded a few minutes later, which caught me unawares despite happening at the same time every Tuesday morning for the past six years and more. I’m laughing at the irony in hindsight: I just got over one alarm and there was another! However this one didn’t cause me nearly as much distress because I was already in my coping mindset. Yes, it was painful to the senses and I couldn’t physically do anything while it was ringing, but I had successfully reduced my stress level from the first alarm and had the reserves to avoid a full overload.
A couple of minutes later it was all over. I went for a short walk to give myself a break and help complete the process of relaxation which helped somewhat. The tiredness though; that was exacerbated by the effort of will to drag myself back from the brink of meltdown. It wasn’t a very productive day after that: I got through and made a point of not setting my alarm that night. I knew I needed to sleep and recover enough to be able to function the next day and it’s better to be late in to work and productive than turn up on time with a mind like molasses in winter.
I’m not a violent person in general. People who know me well have remarked on my placid nature. But I have a darker side: there’s a reason my mother told my wife to watch out for my temper…
I have a high level of tolerance for frustration or pain but when that state continues — whatever the cause — I become enraged. I shout, yell, scream; I throw things that are close at hand (although as an adult I nearly always have the presence of mind not to break stuff or throw it towards any person); I hit doors and walls.
As a child there were holes in my bedroom walls where I had punched or kicked through the plasterboard. I have punched and kicked through doors, or burst them from their hinges. In later life I have learned to punch solid brick walls where the only resulting damage is to my hands or elbows: this lessens my shame in the aftermath.
Because I do not want to act in this way. I know that my rages can frighten my wife. I have never aimed my rage at a person, although their actions might be the cause, and I believe that my inhibitions against harming a person or animal run too deep even for my rage to overwhelm. But even I can’t be absolutely certain. Because there have been accidents: a couple of times I have pushed somebody away from me after yelling at them to go away and they have fallen. I once hit my wife with the door I was pushing closed as I tried to keep her away from me; I didn’t even notice she was right behind me. Does this mean I could go on a rampage, attacking random people I encounter? I seriously doubt it: my drive is simply to release the anger and I have always aimed it at inanimate objects.
But I have caused people harm as a result of my involuntary violent outbursts. I am lucky that I caused them nothing worse than a bruise: I have to live with the consequences of what I do, whether my acts are conscious or not. As it is I always feel deeply ashamed once the anger subsides and I calm down. I feel guilt. I usually cry and shiver — it’s similar to the effects of shock. I will not — cannot — excuse my violence. But I can try to explain.
Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.
I fall back on instinct which is to lash out, to exhibit violent behavior. It is a reaction, just as screaming is a reaction to acute pain — rather than calmly stating “My word, that hurt”. As a child it was described as “temper tantrums”: that was the best description my parents could come up with. When I am in that state, which is thankfully very rarely, I do not have any other viable means of expressing myself. Instead of reaching the crisis point I have learned to recognize the early signs that I am heading in the direction of a rage and take steps to remove myself from the cause. Often this is as simple as walking away for a while until I feel calm.
For this reason I can understand that when an autistic person — adult or child — expresses themselves through aggression or violence they are displaying a reaction to pain, frustration or some other stimulus that is beyond their ability to handle. This understanding comes from personal experience in my case but isn’t hard to grasp. How many non-autistic people would become aggressive if unable to otherwise communicate their distress? What if they had a severe toothache but their mouth was taped shut? Imagine them trying to seek help in the face of that handicap and in the grip of such pain. Don’t you think they might exhibit some aggression?
Understanding is key. You don’t pour oil on a raging fire: you cool things down. Remaining calm in the face of the rage is so important; anything else simply feeds the flames. And understanding is not difficult to learn. Yes, it takes patience and practice. But when you care about the person experiencing the rage surely your first desire is to help them, to do what is best for them?
Humans may consider themselves apart but are still animals with all that entails. Even a domesticated animal — your dog or cat, say — can react with violence when in pain. Why is it that some people can understand and accept this behavior from their pet as natural but not see the parallels in a child? I may not be able to excuse the violence in myself but nor can I excuse a failure to understand its causes in those close to me, or close to anybody else who suffers something similar.
I am lucky in that I am able to analyze and explain what happened once the violent episode has passed. For those who are not so lucky and are not able to do this I can hope those close to them might gain some insight from my own experiences. I can’t say that the violence is avoidable but there are ways of handling it calmly that reduce its severity. And analyzing its causes can help you develop strategies to avoid the triggers. Above all, please remember that the violence itself can be as traumatic to the one experiencing the rage as it is to one observing it: it is disturbing to feel that you are not in full control of your own body, and on top of that is the shame and guilt in the aftermath.
Bright, flashing lights. Loud, high-pitched sounds. Rough, scratchy touches. I find all of these overstimulating, sometimes to the point where they overload my senses causing physical pain and stress. It’s a cumulative effect – as I experience the sensory input I first feel discomfort. This builds along with my stress level.
There are times when I just up and leave to escape from the sensations. This is effective from my point of view but not so good when I’m in company. Then there are times when I dissociate – withdraw into myself – and largely stop being consciously aware of my surroundings. Finally there are the times when I am not able to get away from the stimulation, when I am not in a calm enough frame of mind to withdraw.
In those situations the stress builds and builds like a lake filling behind a dam. Only instead of water it is an inner rage. From trying to block out the offending sensation, I now find myself fixated on it – tunnel vision where all I can see is the source of the anger and pain. My muscles tense, my blood pressure rises. Unbidden, dark thoughts of violence rise from the depths of my mind, hurling themselves against the walls of self-control that contain them. I am beset by images of the destruction of my nemesis; I picture myself wielding sledgehammer or wrecking bar and pounding the offending object into mute submission as I scream and howl, releasing the rage.
I am not a violent person by nature – people know me as laid-back and easy-going. It usually takes far more to rouse me to anger than most other people, and I very rarely feel anger towards a human or other animal. But when the pressure builds inside… I find it exhausting to hold it all in, and when the dam breaks open everything I had held back floods out in a meltdown.
Afterwards is emptiness and exhaustion. And then, later, comes the shame. Shame of failure because I lost control. Shame of drawing negative attention from those around me.
Two things prompted me to write on this subject today. The first was this blog post about misophonia. The second was a very unwelcome change in my local pub: a slot machine was moved to a new position right next to where I usually sit. Bright, flashing lights directly in front of me – need I say more.