Disclaimer: This blog contains references to autistic meltdowns, self-harm and suicidal thoughts. It is also my personal experience of autistic meltdowns and my own experience of neurodiversity and does not speak for anyone but me.
The musical theatre kid (and Stephanie J Block stan) in me couldn’t resist that pun for what is a pretty heavy blog. Also, that song has been in my head the whole time I’ve written this. So, as a treat before we start:
But in all seriousness, this is a blog I’ve wanted to write but really struggled to write.
I wrote in my last blog on autism things that a ‘meltdown’ isn’t perhaps what people think it is. You say ‘meltdown’, and people often assume it’s having a little hissy fit over not getting your own way. Or a little bit more stressed than is ‘usual’ or ‘normal’.
Even within the neurodiverse community, I think there’s often a lot of difference in what different flavours of neuro spicy mean by the meltdown. And that’s ok. To an ADHD-er, it COULD be a stress overload, refusal to engage with something or a little argument/shout over being overstimulated or suffering rejection sensitivity or similar (I use that as an example as an AuDHDer myself, but many other neurodiverse people might have versions of what ‘meltdown’ means to them). But what I want to talk about here is the particular and often quite hidden version of meltdowns when we mean Autistic meltdowns.
Again, this is my experience as a high masking low support needs a late-diagnosed autistic woman. Now those seven caveats are out of the way, all to say this is my, and probably others with similar lived experience version of that. That’s not removing those with different or higher support needs or saying this is better/easier or worse. It’s just an experience. But I rarely see one talked about, and I think that the world, and probably fellow autistics of similar experience, will also benefit from my sharing. As scary as it is.
Never knowing they were meltdowns/one of the big ‘what is wrong with me’ things that diagnosis and learning about autism helped with. For all my life, I had these episodes that I knew weren’t ‘normal’, but I also had no explanation for.
Fern Brady articulates it/talks about the same experience. Her book ‘Strong Female Character’ talks about how she’d wreck furniture in her houses through uncontrollable rage. It was only when she was diagnosed as autistic later (in her 30s) she learned these were meltdowns.
I went my whole life thinking there was…something wrong with me. That I never managed to learn to control myself. That I just…broke. Over and over. Or that I was a terrible, violent person who deserved to be punished.
Reading Fern Brady talk about her meltdowns was so validating for that reason; it made me feel seen as no other person talking about autism had. In particular, she too felt like a true ‘late diagnosed’ woman in her 30s when it happened, and again, having lived such a huge portion of her life with this- and with meltdowns felt so validating.
Another thing I always think of when I think of meltdowns is Taylor Swift’s song Seven from Folklore. Both the song and what she says in The Long Pond sessions. She says, ‘I always think when I see a kid throwing a tantrum in a grocery store, I ask myself when I stopped doing that when I was upset. When did I stop being so outraged that I’d throw myself on the floor and throw the cereal at my mom?’ in response, Jack Antanoff responds, ‘It doesn’t stop, but where does it go? You’re still having that feeling, but where does it go?’
That from both of them- the idea of where you put the feelings is a huge one for autistic people. We’re missing or have different ways of understanding and regulating emotions, and meltdowns are often a result of not having a place to put that feeling. Or that the world around us, that ‘grocery store’, doesn’t allow us a place to put that feeling we’re still having but can’t express in whatever way.
And while I must stress hard that a meltdown isn’t like having a tantrum (a tantrum in the grocery store has a goal of getting something or expressing rage, but a meltdown doesn’t), that twin sentiment of being able to or not control that and also the ‘but where does it go’ have always stuck with me, as have the lyrics to seven;
Please picture me in the weeds
Before I learned civility
I used to scream ferociously
Any time I wanted
And it’s that idea of ‘learning civility’ and being able to conform and fit in most of the time…until you can’t. That is, of course, peak autistic experience but also that of meltdowns. In essence, for autistics like me, it was easier when we were that toddler having a tantrum because our meltdowns were masked- they were children’s tantrums to the outside eye, even if they never were. It was news to me in researching meltdowns that tantrums have an aim; they are often being used to achieve something…in that way, I don’t think I’ve ever had a tantrum, just meltdowns because I have no conscious memory of ever doing something like this on purpose. Or to get something, or even to voluntarily express something.
Because that’s the other thing too, right that people forget when confusing a tantrum with a meltdown; lots of autistics struggle with being ‘perceived’, and while that expression gives me the massive ick, it’s also true, most of us hate attention in that way, we don't want people looking at us, seeing us. So the idea that a meltdown is a tantrum used to get attention or our way is just…ridiculous to most of us, too. As is the shame attached to it happening, I cannot bear the thought that others have witnessed those moments.
But also back to Taylor, the idea that yes, we ‘learn civility’ also speaks to the experience of masking; we learn to mitigate, to manage, to conceal the best we can…but then when we end up screaming ferociously, it’s because of a huge loss of control. We learn to hold on in that grocery store, work, wherever until breaking point.
One of the most upsetting things my mum has said to me about meltdowns is, ‘It’s only around me you do it.’ which to her feels like an insult, a bad thing, an attack even, and I can see that. But it’s also because, as high masking autistics, we can hold onto just enough control, just enough ‘civility’ to hold off 80% of the time until we get to a safe place. We have such high masking tendencies that we hold on by a thread until we can’t. Most meltdowns happen at home because we mask for too long, hold on for too long, and allow our sensory and other needs not to be met for so long that it explodes out of us there. But again, that’s not the same as controlling it; it’s masking it, not controlling it. And it’s making it worse because it becomes explosive in masking for so long. It’s like, I guess, a water leak; you can plug the hole for so long, but eventually, it spills over, and if the pressure is too much, it explodes.
And like water, there’s very little you can do to halt a meltdown once it’s going. That’s a key here, too- you can do things before the water explodes, either to stop it entirely or to make the explosion and damage less, but you can’t stop it when it spills over. Water finds a way (to paraphrase a Doctor Who quote).
It’s important to say I still can’t control it if it gets to the point of a meltdown happening. It’s not always a trigger per se, more a breaking point or point of no return. So I can sometimes do things that either delay those until I’m in a safe place or, if lucky, accommodate the signs and offset them entirely- whether that’s removing myself from situations, accommodating sensory needs, or managing stress. It’s easy to say, ‘Well, why don’t you do that and control them then?’ because the answer is the things that build up to a meltdown often aren’t in my control/are things I can accommodate. That’s the point- I can do everything in my power, and they’ll still happen simply because life happens. It is in a way no different to someone with epilepsy, who can do everything in their power to avoid being near photo-sensitivity triggers, but one day, either someone will fail to post a warning, or they won’t notice, or something, and they will have a reaction (this is an imperfect comparison but I think the broader idea works)
So, what do meltdowns look like for me? In short, anger. They look like anger and violence and screaming and crying and pain. It feels like a white-hot rage taking over and an out-of-body experience, even though I can see it coming. I can at once moderate it and have zero control over it. In short, it’s like something takes over my body.
In reality, in really harsh terms, it looks like this;
Screaming (literal screams)
Shouting and arguing with people in an utterly irrational, often loud shouting way-often swearing insulting and outright mean.
Curling up in a ball and screaming
Throwing things.
Hitting walls.
Pulling my hair.
Hurting myself- this can be hitting myself, slapping my face. Most often in recent years, it’s been biting my arms.
Self-harm- usually with scissors or a knife, slicing my arms
If I pushed my sleeve up right now, I’d see an array of black and blue bruises, a week and a bit old now, and a series of red cuts from scissors and my teeth and hitting my arm a week or so ago when everything got too much and exploded. None of this is ‘past tense’ or ‘used to happen’ or ‘grew out of’ for me…it’s here and now. I’ve spent a week hiding my arm, with excuses at the ready if anyone asked (ice skating is a great one, also falling off a bike, they don’t know I don’t have a bike). On top of literal pain, there’s also a deep, deep shame of being a 39-year-old woman who hurts herself this way and in a way, she can’t control, and that, too, nobody understands.
If I said, ‘I self-harm,’ that gets more sympathy. So does ‘suicidal thoughts’? Both of these are part of meltdowns, but as part of the autistic experience, not the ‘mental health’ experience, they’re seen as things we should just ‘manage’ or ‘grow out of.’ This was something that happened with that meltdown; I, for once, spoke out about it because I found someone else’s mental health was being leveraged at me. But because theirs was ‘normal’ mental health, it was seen as more legitimate and more important. That was also a pecking order of society, where some people were perceived as more important than others. But, even when you say the words, ‘I had an autistic meltdown that caused self-harm,’ some people will still dismiss you. Because it’s a meltdown, it’s autism; can’t you just…control it? I struggled for a long time to call it ‘self-harm’ because, again, the shame of it, but also the autistic shame of ‘you’re not allowed to be in that category that’s for people with real mental health problems’ because it comes from the shame, but also the years of being dismissed as an undiagnosed autistic person too.
It’s also hard to articulate to people who haven’t experienced it. It’s very much a ‘well, just try harder’ situation. But in a similar way to telling a depressed person, ‘try harder not to be depressed’, it doesn’t work that way. To illustrate that better, I’ll describe the last two meltdowns I had.
The most recent one. I’d been stressed all week, more than all week. There’s a cumulative stress that’s been present since before Christmas. But also, in recent months, I’ve been quite seriously ill (as documented in this blog) and on medication that triggers anxiety, along with being triggered by a series of stressful events. One final straw that hit me when I came home from the gym (ahem, see autistics trying to regulate themselves, and it's not always working). I cried into my dinner (again, regulation) and…exploded during an argument with my mum. It was short and not sweet, and during it, I could feel the need to…hurt myself. That’s the only way I can describe it. But it’s not like a pre-meditated need to self-harm, a planned action. It’s a ‘snap’ in the brain and an immediate fight-or-flight response of hurting myself by whatever means available. This time, I hung on until I was in my room, and then…proceeded to hurt myself for long minutes, biting, scratching and cutting my arms. It’s not like either a regulating behaviour where that act of self-harm or violence stops the meltdown. It just…is the meltdown. Is it rational? No, but if it were, it wouldn’t be a meltdown. It’s uncontrolled and hard to stop.
I can eventually pull myself out of it, as I did that night- getting up to teach less than half an hour later. That might seem counterintuitive to what I’m saying, and in some ways, I guess it is. But teaching is an extreme version of masking, which I find helps immensely. So, switching almost up two gears to teaching masking rather than regular human masking helped pull me out of it. Being ‘on’ for two hours helped flick some of the circuits back in my brain (again, this is just what helps me, and it’s different at different times). Did it work altogether? No, this version had one version of a meltdown hangover in that it wasn’t all ‘out’ of me…and the next day, when triggered again by something, I had to fight hard not to meltdown in public, not to hide somewhere and hurt myself again…and it was hard not to do, and I still when in private again was mini-melting down I guess. Again, there’s no science to this often; it's just a bunch of things that mix, and you try and manage the best you can.
But there’s also an aftermath to deal with. That can vary- mostly, it’s being sapped of energy in an extreme version of too much socialising. For me, too, I often experience a sort of shutdown element where I don’t function as much for a while and speak very little. But another scarier part is that they can trigger suicidal thoughts. I said in the last blog that pre-diagnosis, I’d often have thoughts of ‘I wish I were dead’, and to be honest, the autistic part of me didn’t understand how severe other people would think that was; it was to me an entirely rational response to ‘everything is awful why continue’. And post-meltdown, sometimes, like last week, those ideas return. Again, to autistics rationalise it- the extreme stress that leads up to that moment means that this response becomes almost logical. But it so often, too, feels like, as an autistic person, my mental health responses almost…don’t count, particularly when they’re attributed to meltdowns. They’re not a moment of sympathy but instead a ‘can’t you do better’ or ‘stop being so immature and silly’ when, in fact, they result in the darkest of thoughts.
The time before is a different kind of meltdown on many levels. And the shame and impact are different again. This one happened in public, at Niagara Falls, of all places. This was a couple of days into a trip, and TLDR travel has been difficult for me in recent years; a series of neurodiverse mess-ups when travelling, as well as the ongoing impact of unmasking, and it’s a lot. I know this and try to manage it, but I’m not there yet. So in Niagara, it all spilt over…this time in public (literally right by the falls). And during this, while I was melting down, I ended up lashing out at my mum. This happens sometimes, and it’s my deep, deep shame. Again, it would happen that whoever was near me tried to restrain me or just got in the way. But it will forever be something that I’m deeply ashamed of that it causes me to lash out at my mum and that, yes, I have on occasion hurt her. I cannot express how bad that makes me feel. But this time, I separated myself and took myself away (in, I might add, the pissing rain, the glamour). I had a very public meltdown, complete with shouting and hurting myself in public. I don’t know if anyone looked; I don't know how they reacted. I know I ended up biting my arm on a rock by Niagara Falls. I do know I ended up crying in the cafe there, and that forever, that place and that memory are tied together- Autism ruining so many memories in life for me. I do know too that I still had to get us ‘home’ to Toronto from there, too, and had to ‘pull it together’ in time to do that…and that feels like the battle of high masking autism, that you lose control. Still, you’re also expected to be ‘adult’ enough to get it back together and sort your life out repeatedly. Even if then you’re crying on the train home.
Both of these are shocking improvements in how things used to go. And at the same time, they’re worse. So far, so autistic, I guess. In some ways, things have hugely improved in that I recognise them as meltdowns now. I know how to regulate somewhat or offset the worst of the impact. I know to (try) and take care of myself after. I know there will be a lingering impact. I am slowly trying to have difficult conversations with my mum about them and what helps, what doesn’t, and being able to make things right after, even for the things I can’t control. But at the same time, things are worse; I never used to hurt myself as badly. This was, in fact, a thing that started in the two years or so in the run-up to my diagnosis, some version, I guess too, of skill regression that hopefully again will get better with time. Or maybe it won’t. I have to live with the fact that this is part of my life forever again; there’s no ‘cure’; I won’t get to a certain age, and it just stops happening.
A considerable fear, too, is getting older or getting sicker and then being worse. Again, I wrote about chronic illness and fears about getting sicker there in this blog, and for me, both physical health issues and the stress of medical aspects trigger meltdowns. And let me tell you that you haven’t lived until you’ve had a combination panic attack meltdown followed by a colonoscopy. (Again, we can see how that happened: stress, sensory issues and being deprived of food for 24 hours…but again, we’re expected to ‘just deal with it.’). And so I fear getting older, having more medical issues, having more meltdowns and again having to do it all alone as well.
Because meltdowns are one of the most lonely aspects of autism for me. Both in the moment and after, for the shame of it, for the feeling that nobody understands it, the judgment of it…and just needing to for once be looked after a bit as a result of it. But of course, in the broader picture of being a late-diagnosed autistic adult, all of those things are difficult and make it a tricky part of this experience. Probably the worst part- the part that if I were allowed to wave a magic wand and remove one thing, just one thing about being autistic, it would probably be this.
What now? Well, there’s not really a ‘what now’ except a hope to continue learning to manage this part of autism better. I hope too for understanding from others, and that if I can speak on it, maybe others can feel less alone in theirs.
This has been a heavy one, Sad Penguin thank you for listening.
Thank you for sharing. I'm sending a virtual hug – fully returnable if hugs are not a thing for you. 💕
Thank you for sharing this. I’m not autistic but so much of this resembles how I “break” when my anxiety/depression become too much (also think I may be undiagnosed ADHD but 🤷♂️). And the shame of my family getting to experience the brunt of the worst of it because I feel safest around them😣.