The other day, someone on Twitter – an autistic person who doesn’t experience them – asked me what it feels like to have a meltdown. It’s not a subject I especially like talking about – I’ve attempted to write about it several times on this blog, got frustrated, and given up.
This past week, I had one of the most distressing, disorientating, debilitating meltdowns I’ve had for quite some years. Three days after it happened, I’m still exhausted. But the immediacy and severity of this recent experience gave me the language to tweet a thread about how it feels (for me at least), and it appeared to be something others found useful, so I’m expanding that string of tweets here, so it may reach a wider audience.
Bear in mind here, every autistic person’s experience is different. The following words do, however, give an illustration of what a meltdown is like for this particular autistic writer.
I’m an autist who experiences long build-ups to meltdowns, and I’ve discovered that this isn’t true for everyone. Some of my neurosiblings crash without any prior warning – or, at most, an hour or so of feeling like something is imminent. Perhaps it’s my anxiety. Perhaps my senses of introception, introspection, and the fact that I am by nature highly self-reflecting and -analytical. Whatever it is, I can usually tell I’m “due” a meltdown, even if I can’t quite tell exactly when. That uncertainty only adds to my anxiety.
It’s usually preceded by a few days of feeling “fizzy” – like a cola bottle that’s been shaken up but the lid’s still tightly on. Often in these periods, I need to stim a lot. Huge, exaggerated, full-body stims. I’m one of those autistics who pretty much stims 24/7, but these are bigger. I need to sway, rock, spin, vigorously shake my hands, windmill my arms, swing my legs, stamp, pace, clap.
If I can get out and properly exercise, I can sometimes keep the bad stuff at bay; if not, the pressure continues to build.
Usually, when I’m approaching the Actual Meltdown, I feel like everything is amplified. Especially human voices. They feel dramatically louder than normal. It feels as if everyone is shouting DIRECTLY INTO MY EARS. The sound of humans shouting is one of my biggest anxiety triggers anyway. It’s a sound that instantly sets my heart racing, stiffens my shoulders, and puts me in fight-or-flight mode.
But all speech feels like shouting when I’m approaching or mid-meltdown. And I have this sense, also, that everyone is speaking in a different language.
This “foreign”-ness is only one small part of a much bigger, more complex sense of dissociation. I feel like I’m not entirely there, like I’m in a parallel universe, but the one everyone else is in is visible to me. I’m immersed in it, without being in it. And yet, touching or interacting with anything in that universe feels as dangerous as being exposed to Kryptonite.
The build-up keeps happening. Everything gets louder. Bigger.
Closer, and yet at the same time more distant.
And then, something – one final thing – will cause the crash.
The biggest thing is crying. I’ve always been a cryer. I don’t cry at the things other people cry at, but cry at things other people don’t cry at. But my meltdowns pretty much always involve uncontrollable crying. They always have done, from childhood, through my teens, right the way through my adulthood, and that’s still the way things are today.
I feel my face getting hotter, my body starting to tingle, the tears forming. Long before it happens, but still utterly unpreventable.
There’s an embarrassment-in-anticipation. I know I’m going to be the Crying Adult. And then the waters break on the shores that are the cheeks of my face. And then the waves keep crashing in.
If the final trigger (bear in mind: the trigger of a meltdown is simply the last straw, not the sum total cause) is something a particular person has said or done, I’m likely to swear, berate, and shout at that person. I hate this. I hate being unpleasant to people. So not only must I endure the devastating embarrassment at the meltdown itself, there’s the all-consuming guilt about possibly upsetting someone.
In these times, I feel utterly terrified. Completely and utterly shocked, Every. Time. It. Happens, by my complete and utter loss of control. If anyone tries to interact with me, touch me, or even get anywhere near my personal space, I will shriek, screech, and flail my arms. I’m terrified by the invasion, the intrusion. The interaction itself highlights to me that I’ve drawn attention.
And yet I cannot use verbal language coherently enough to explain.
But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.
Whilst I nearly always cry, sometimes I don’t swear, scream or shout. Sometimes I simply need to run. Get out. Get away.
But even when I do this, the inner storm rages on until it blows itself out. The parallel universe that is not my own still exerts its extreme pressure upon me.
But eventually, it subsides. And then I’m spent.
All of this exhausts me. I will always need to lie down. Usually I’ll need a lot of sleep. Quiet. Darkness. And the next day, I’ll usually feel similar to how I feel the day after a migraine. Completely wiped out.
Often, I will actually get a migraine. All of this is neurological, you know.
And yet, I know the meltdown was necessary. The lid had to come off that cola bottle.
Meltdowns are hideous. And they are not the same as temper tantrums.
They’re not behaviour; they’re a neurological reaction.
A reaction to too much.
Too much change.
Too much surprise.
Too much information.
Too much stress.
Too much stimulation.
Too much worrying.
Too much interaction.
Too much time spent making oneself “acceptable”.
Too much time without sleep.
Too much energy expended.
And this is the same for autistic children and autistic adults.
The neurotypical world is hard for us. There’s much that I love about my brain, and being the way I am. But know this: we have to work hard every day to exist in a world that isn’t our own.
And so, if you see an autistic person who is experiencing a meltdown, be gentle with us. Give us space if we need it.
We suffer enough at unintentionally becoming public spectacles. Even if you don’t understand it, be compassionate. So don’t gawp. Don’t point. Don’t stare. Don’t ridicule, berate or attack us.
Don’t punish us.
If you love and care for an autistic person, notice when things seem to be getting too much. Don’t express unreasonable demands or make any but the most necessary of changes. Keep the environment as gentle and calming as possible.
And if they do come crashing down, give them time to rest and recover afterwards. They will be worn out. Emotionally, mentally, and physically. Look after them, but respect them.
And overall, be kind.
[Featured image description: a line-drawing of a white female-presenting person with chin-length hair, wearing a winter coat with fluffy cuffs and collar, holding their hands over their ears, eyes closed, tears running down their cheeks. They are surrounded on all sides by a mess of dark, painted colours, which appear to be closing in on them.]