On meltdowns

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.]

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Performance

I’ve been something of a performer all my life.

At primary school, it was drama. I never got to be the heroine or the pretty princess, but that didn’t bother me (mostly). Gleeful, gorgeous, grotesque riches were bestowed upon me in the form of ‘character’ parts: witches, ghosts, and anyone requiring an accent. I got to play around with voice, mannerism, posture, stature and facial expressions in ways that I found utterly delicious.

The move up to secondary school ushered in a small fish:big pond tale of bit parts, walk-ons, clumsy full-cast dance scenes and dressing-room boredom. I was never simply “glad just to be involved”; I wanted to act, damn it.

And so music took over. After a brief spell contending with the solitary, arduous torture of beginner piano, I plumped instead for the trumpet. You couldn’t escape it. You could play it in all kinds of genres. And you could play music with other people, in actual bands, before you actually even had to be any good at it.

The loudness was the point. I loved the fact I couldn’t hide; or rather, that I could hide myself behind that brazen, brash brass instrument. I could be the centre of attention, without the audience’s attention being solely centred on me.

Performance did, however, extend way beyond theatre and music.

Every day was, and is, a performance.

I’ve rejected any early-in-my-identification-as-autistic notions that I ever “masked” my autistic traits. I wouldn’t have had a clue what on earth I was trying to mask, for starters. It was pretty apparent to a lot of people that I was a bit (well, a lot) weird.

Still, perhaps stage makeup is a mask, of sorts. I performed the role of a girl. A proper girl, like all the others. I wasn’t trying deliberately to cover up aspects of my own self; I was simply playing the same role I’d always believed others also had to consciously “act out”.

I didn’t do it with uniform, or universal, success, of course. There was so much I simply didn’t get about being a proper girl. And yet. The tone of voice. The mannerisms. The (only partially feigned) interest in beauty and fashion. The purchasing of teen girls’ magazines. Shopping. The fancying (at least romantically) of boys at school. All that I could sort of manage.

But it still felt bewildering. And never quite real.

I was far more comfortable with the mixed-gender groups of friends I knew outside of school. My gaggle of gig-going buddies. The fellow musicians in the district orchestra and concert band. People with whom I could bond over genuine shared interests, irrespective of each others’ gender.

I was never a boy. I never felt like one, nor ever wanted to be one. I was never even a tomboy.

But still I struggled to perform the role of the normal girl.

And yet, as an adult, as people wanted to call me a woman, so I wanted to continue being referred to as a girl. “Woman” felt like someone else. I disliked “Miss” but rejected “Mrs”, or my husband’s surname, when I married – again, “Mrs” didn’t sound like me. It sounded too…grown up. Old, even. It still does.

(I go by “Ms”. Part of me occasionally gets half-tempted to switch to “Mx”, in part to annoy the people who don’t even like “Ms”. But my life is complicated enough already, what with me being openly autistic and everything. I just wish people would always use first names and nothing else, really.)

I don’t have problems with being a mum, or being called one. That one fits.

But I still feel like I’m always performing a role. Playing a part. The competent adult. The consummate professional. The confident parent. I even struggle to understand how to properly be an adult child to my parents. That script can be particularly hard to read.

I don’t feel as if I “perform” the role of friend. I care too much about friends, and friendships, to be anything other than as genuine as I know how.

Everybody performs. We all switch personae according to context, situation, environment. And most of all, who we’re with.

But we autistics so rarely get to take off the costume and be fully ourselves.

So often, the very way in which I’m openly autistic is in itself a piece of performance art. I could easily dull the sensory impact of bright lights with a very discreet pair of shallow-framed tinted glasses. But no; I walk into conference plenary sessions wearing oversized vintage-look shades. I revel in doing so. I could subtly stim in work meetings by playing surreptitiously with my engagement and wedding rings, or the cuff of my sleeve. But no; the Tangle is in my hand, and my hand is on the desk. So often must I write, rehearse and memorise the scripts for my many upcoming performances in the role of the pseudoneurotypical woman, that I grab any chance I can get to “be autistic”.

And when I’m out and about, I confess it: I play up to the camera.

I flick, fidget, sing, hum or nod my head to the music on my mental jukebox more obviously in public these days in part because I don’t give a bloody hoot about who objects to my doing so, but also because, deep down, I hope another autistic person is nearby, noticing.

I’m an actually autistic impersonator of an actually autistic person, performing an exaggerated version of my true identity for dramatic effect. It’s freeing. Liberating. Fun.

But it’s merely signals and signifiers. Camping up a stereotype. It’s real, but it’s not the full story.

I’m at my most autistic, under normal circumstances, when I’m at home – either because I’m tired, stressed and meltdowny, or because I’m being a kid, with my kids, and able to play. And when my daughter and I go on makebelieve adventures, we are always ourselves, wherever we travel to.

But I’m only ever able to be truly autistic, without the added dramatic effect, or even affect, when I’m with other people like me. And that’s rare.

Performance can be enjoyable. Joyous, even. But sometimes I need to remove the layers of panstick, and just be me.


[Featured image by Arch’educ. Image features a wooden theatre stage. A deep red curtain hangs closed over the stage, touching the stage floor.]

I hate asking people for stuff.

I have a problem. I’ve had it most of my life. I’m scared of asking people for stuff.

I’ve written before about my love of Dr Martens boots. What I’ve never mentioned before is how long it took me to actually work myself up to asking my parents for my first pair. Everyone at school seemed to have some. Black, of course. And I desperately wanted a bottle green pair. 

I played through the phrases I would use to make the request. I felt sick. Short of breath. Tense. It took weeks, but eventually I asked them, and they said “yes”. Pester power of a teenage child? Perhaps. But that teenager expended so much nervous energy mustering up the courage to (mildly) pester. And besides, the boots lasted me years. They were a worthwhile investment.

What the hell was I scared of?

To this day, I have never, ever asked anyone out on a date. I don’t have to worry about that any more, of course. But whenever I “fancied” boys at school (is “fancy” the right word? Reflecting back, my crushes were almost always of a romantic rather than a sexual nature), I wanted them to know, but would never have told them. Given how “weird” I was perceived to be, I assumed I’d be rejected.

I’m not sure what it is about asking people for things. I think it’s a combination of factors. I’m less petrified at the thought of making requests by email, so presumably verbal communication is one of the issues.  I’m scared of people saying “no”, and I’m scared of my own reaction when I’m there in front of someone. Oh so often, receiving bad news reduces me to crying meltdowns that seem woefully, hugely disproportionate to the situation at hand. I’m terrified that if I get the wrong response, I won’t be able to control my reaction. I’m worried that I’ll get into an argument, and that I’ll be unable to respond quick enough, and rationally enough, in a real-time, verbal one-on-one duel.

Making requests in writing, and processing any responses given in the same medium, offers me distance. Time to consider. And privacy. I am not exposed and open to the scrutiny of others when I give my reaction.

I fear rejection, a “no”, or the “wrong” answer because I so often take it personally. I worry that if I make a request that is turned down, it’s because I was at fault. Be it as it may that there’s a perfectly valid reason for the other person to turn me down, I’m still at fault. And I worry that that other person will judge me negatively for making that request.

It’s crap, really.

I procrastinate over asking my husband if he can manage the kids’ bedtimes one night so I can meet some friends in the pub. Very often, I’ve had that invitation long before I work up the courage to mention it to him. Even though we’ve been married for years, and I know it’s very likely he’ll be completely fine about it, I still dread making the request.

I procrastinate over mentioning family visits. Even though my husband, though allistic, tends to like at least some prior warning of things, I leave it longer and longer and longer before telling him. It’s caused arguments in the past. He’s been embarrassed in front of friends and family because I haven’t kept him informed, and information, events and activities have been sprung on him when everyone else has known for ages.

Nowadays, I often add events, especially social activities, visits from the grandparents, kids’ birthday parties or work trips that will take me away from home, to the wall calendar in our kitchen – sometimes months before I actually speak about them. I can quite comfortably write things down well in advance.  But mentioning them verbally requires feats of bravery that take time to summon.

I’m better at asking people for stuff at work than I used to be. I’ve had years of practice, and whilst I still do procrastinate, the pressure of knowing it’s part of a job I’m paid to do does eventually kick me up the arse and make me act. But I still worry about it.

Anxiety is debilitating.

It does prevent me getting on with daily life sometimes. It prevents me having fun, God damn it, because I’m too wound up to get to the point where I can just give myself permission to get permission, to have fun.

And even when I’m happy, and life is good, I still hate asking people for stuff.


[Featured image: cartoon me. White person with mid-length brown hair clipped to one side, wearing a striped sleeveless top, fidgeting with my hands. A thought bubble reads “Please, may I…? Um…can I…? Do you mind if…? So, I’m thinking of…”.]

A line has been crossed.

As I wrote in another post a while back, sometimes it hits me.  And this morning it really, really hit me.

And I did something I’ve never done before.

Since my official diagnosis, exactly two months ago today, I’ve been – as usual – in numerous situations at work where I’ve been required to ‘network’. Communicate fluidly, fluently, and with facility. Be my best interacting self.

Two weeks ago, I was away at a conference for three days. I networked furiously, contributed to discussions, tweeted insightful nuggets of wisdom against the official conference hashtag from my professional Twitter account, drank wine, danced my ass off at the gala dinner, and successfully co-presented a workshop session (I have no qualms about teaching, presentations, public speaking or the like. I very rarely even get nervous. I’m usually well-prepared, and I’m usually the expert).  It wasn’t until the train journey home that I mentioned to anyone that I was autistic.

(That ushered in a fascinating in-depth exchange, lasting the entire journey, with the fellow delegate I was travelling with. But that’s an aside.)

My department colleagues all know. They’re supportive. They were making ‘reasonable adjustments’ for my needs before I’d even got a diagnosis; before my ‘problem’ even had a name. When I did announce my label, it was all cool.

But today,  I entered new territory.

A three-hour-long planning workshop. People from four different departments. A small room for the size of the group. Hot, stifling, crowded, and cramped. A packed schedule of group discussions, with activities planned to keep us busy even throughout the coffee break. Fluorescent lights. Construction noise outside. Some machine or other outside that occasionally issued an irritating high pitched “beep!”. Occasional moments where I was put in the spot to answer questions about services delivered by colleagues in my team about which I had limited knowledge.

And all of this when I was tired from being a parent of small children, from limited sleep, and from the fact that this time of year is kinda busy for me at work. My brain already works overtime, every day. And right now there’s overtime on top of the overtime.

For most of the morning, I managed. But gradually, my anxiety levels built up. I knew I had only a short window to do another piece of work before I’d be in another meeting all afternoon. I was frantically trying to interact with these colleagues whom I hardly knew, worried about how I might be coming across, whether my mannerisms were odd, whether I was being too controlling, or too awkward.

And all the time, getting hotter and hotter, more and more uncomfortable, more and more overwhelmed. I could feel the tears starting to build up; not quite yet breaking through.

And half an hour before the end of the workshop, I said it. To the people on my table. Colleagues, but ones whom I hardly knew.

“I’m really sorry. I’m autistic, and I’m starting to get overloaded. I think I’m going to have to leave now.”

There. The first time I’d been up front to people beyond my immediate team, and in the immediate context of a particular work situation.

I wish I hadn’t felt the need to utter the word “sorry”. I still couldn’t help being embarrassed. I hope that’s something that I eventually learn to get over. But I felt I had to be honest. Why make up a lie – or a euphemistic, veiled reason for leaving? Better this than bursting into tears.

I’m not sure what they’ll have made of it. One of the people came out with me, sat with me for a while, and helped calm me down (she had relatives who are looking into whether they might be “on the spectrum”).

The others on my table might have found it odd. Awkward. Uncomfortable. But maybe, later on, they might think back and wonder. Possibly do some finding out. Or maybe not. Who knows?

But I have been honest.

A line has been crossed.