I’ve talked before about meltdowns – what they are and how to survive them – but I’ve seen several places in online groups where people ask what a meltdown feels like, how it happens, what it’s like to go through one.  So today I’m going to try to break down the steps and stages of my meltdowns.  Remember that all autistic people are individuals and my meltdowns are mine, not anyone else’s. 

Before We Begin

Let me start with a quick note, as I’ve said before, that meltdowns are not tantrums.  We don’t have them on purpose and we’re not trying to get something out of it.  Meltdowns are the result of an overloaded brain that can no longer cope with whatever is going on and needs a complete reboot.  My best analogy is a computer with an overloaded processor, spinning that dreaded little circle or, depending on your age, giving you the Blue Screen of Death.  (I’m a PC user; Apple users, please tell me an equivalent analogy in the comments!)   

How Does a Meltdown Begin?

Simply put, it starts with stress.  Any kind of stress.  Sensory overload, expectation or demands, having to socialize or mask heavily, or, perhaps most commonly, an unexpected occurrence or change.

Now when I say “unexpected”, I mean something that I didn’t predict.  This leaves a lot of room because autistic people aren’t great at predicting things.  We tend to get one scenario in our head: we imagine that we will do X and the result will be Y.  I do this all the time – I play out the scenario in my head over and over until I feel really solid that I know what I’m going to do and what’s going to happen – this gives me a feeling of security that helps ward off my constant anxiety.  But if any aspect of the situation deviates from my plans and script, I get lost and I flounder.  That stick-shift brain of mine starts grinding and I can’t find my gear again for a while. 

This is stressful.

The thing is, this can be anything – big, small, it doesn’t really matter.  The one item I went out to buy isn’t in stock, a car repair cost several hundred dollars more than I expected, or something has to be done on a day that I had reserved for doing nothing and recuperating.  As an autistic adult, I can see which events are annoyances versus which are “Real Problems”.  But that doesn’t change how my brain reacts to them. 

The Build Up

Several tiny stressors can add up to one huge hurt.  It’s like my mother used to say, a million people walking by and barely touching you all in the same place will eventually beat you to a pulp.  So even without something big happening, many little annoyances can bring on a meltdown, too.  For instance, take a small-ish frustration like the soda fountain being out of the root beer that I’d looked forward to all week as my Saturday treat, add a mild sensory overload like being in a bright, crowded store, plus a disappointing change in plans like not being able to get the key ingredient for the cookies I’d planned to make that afternoon, and they all start to pile up.  With each little upset, I lose a coping spoon, and before long, I’m down to my last one.

Now, here is where a meltdown can look like a tantrum.  To the untrained eye – or the non-autistic mind – a meltdown is caused by JUST ONE of these tiny stresses; the most recent one, whatever it was.  But that’s not what’s happening in my autistic brain.

What’s happening is that each small frustration and stress has caused my brain to have to adapt quickly, which is not its strong suit.  Quickly adapting to changes makes my brain work extra hard, and it is exhausting.  On top of that, there’s the logical side of my mind constantly reminding me that I’m an adult and these things are nothing to get upset over, so I get caught in a loop of being upset and being mad at myself for being upset, etc., etc., etc.

The First Threshold – Losing Speech

In short order, my mental energy gets depleted and I have nothing left.  About that time, I go non-verbal.  Going non-verbal is a weird experience.  It starts with certain words disappearing not only from my mouth but from my brain.  When I try to think in language, my brain grinds to a halt somewhere along the way.  If you try to talk to me, I do a lot of hand gestures and pointing at my head, trying to communicate that my brain won’t do language at the moment. 

After a while of this – the length of time varies – all my speech goes out and things change.  At this point, it’s as if there’s some kind of glitch in the connection between my brain and my vocal cords, because now I can think in full language again, but the words can’t get to the physical parts of my body to produce speech.  I often clutch at my throat as though I have laryngitis or something during this stage.  But it’s not that I can’t communicate – I can still type, text, even sign a little (I keep meaning to pick up a sign language course for this very reason, but I don’t know how much use it would be).  If I’m very very lucky and have the right support, a meltdown can still be prevented at this point, but it’s a narrow window of opportunity.

When the Levee Breaks…

After a little time of being non-verbal, I break down into full-out screaming sobs.  This is the real meltdown: the primal, animalistic, barely controllable, throat-tearing crying.  It hurts.  It hurts all over.  It’s the sort of crying that infants do that makes you think they’re going to make themselves vomit – it feels like I could turn myself inside out with the strain.  I can easily lose track and/or control of my body at this point.  I might flail, or claw at my skin, or beat at my chest or head.  Alternatively, I might just wrap my arms tightly around my torso and rock for all I’m worth.  As an adult, I’ve learned to catch myself before I lose control and put myself somewhere small and safe, like wedged between my couch and coffee table, usually with a pillow to muffle my screaming.  So far, my neighbors haven’t complained, so I assume it’s working well enough. 

I can’t tell you an awful lot about the next part of a meltdown because it’s kind of blurry.  I know there’s a lot of crying and screaming, usually some rocking and a lot of physical tension.  When I start to be aware of things again, my body always hurts in odd ways.  But just because I’m aware of myself and my surroundings again doesn’t mean it’s over.

Rebooting

If you think of a meltdown like rebooting a computer, there are three stages: the shutdown, turning off, then the boot up.  In my meltdowns, the boot up is almost a fugue state.  I’ll be able to get up and move around; in fact, I frequently pace for self-regulation with my arms still tight around my torso.  However, my brain isn’t fully functional yet.  I’m still non-verbal and totally incapable of eye contact, even with a face on a screen. 

This period of re-regulating while mute can last longer than the first non-verbal stage or even the actual meltdown.  Falling apart happens pretty fast, but rebuilding takes more time.  My brain comes back online slowly, in pieces.  After a little while of pacing, I can process speech enough to respond to simple yes/no questions with a nod or shake of my head.  It’s a good time to offer me a cup of tea, because that takes time to make, but not a glass of water because I’m not yet ready to hold anything or drink without choking.  During this part of the recovery, I begin to think in language again, but my brain runs phrases on loops, like unspoken echolalia.

Finding My Voice

Getting my speech circuits back online is often the hardest part of my meltdown recovery.  As I begin to be able to parse language again, I usually start with some simple signing or fingerspelling – these are most accessible to me because they’re forms of movement, expression through my body instead of speech.  It’s good for me to have someone around to talk to me in low, soothing tones, but I live alone, so I generally have to settle for some quiet tv (yes, for the hundredth time, British accents are always my go-to).  My first vocalizations will probably be responses to something I hear said, chuckling at a joke, for example.  Slowly, I’ll start using short phrases but only as observations, I won’t interact with people.  About now is a good time to offer me a glass of water or for that cup of tea to be ready, because I’m regaining control of my airway and swallowing, and my arms are probably ready to hold something. 

Recently, I’ve found an interesting bypass in my speech circuits.  I’ve decided to attempt to become a polyglot, learning both Scots Gaelic and Welsh, and I’m still in the early stages with a limited vocabulary.  But I can make a few simple sentences.  And I’ve found that I will sometimes think in and speak a little of one of those languages while I’m still almost completely non-verbal in English.  I haven’t yet learned how to use that to help speed up my recovery, but it’s something to think about.  I wonder if someone speaking to me in one of those languages would make me able to respond?     

Back Online

When I do start to fully speak again, I don’t always make sense.  I don’t speak gibberish, but I’m not always…shall we say, grounded in reality.  I may recite prayers or movie scripts, I don’t really know why.  Maybe my brain is running test patterns to make sure the speech pathways are working correctly.  (I’ve just realized that this sounds a lot like Commander Data explaining a self-diagnostic and repair… Makes sense to me.)  Eventually, I do come back to earth, as it were, and acknowledge anyone around me.  Eye contact will be limited, but present.  I’ll be able to get myself food and drink as necessary, but I don’t tend to have much appetite.  I’m usually tired, but often I can’t settle down and be still for quite a while yet.  My weighted blanket, a cup of tea, and something on tv that I can recite by heart without thinking are all helpful in getting me back to myself, as is firm but gentle touch from another person. 

The pain starts to come through at this stage as well.  My head aches from crying, my body is sore from the tension I held, I may have nail marks or bruises from my own grip.  If I have the presence of mind or someone to help me, a hot bath can ease some of the pain before I go to sleep, which I always want to do after a meltdown.

Apologies

The apologies are sprinkled throughout my meltdown recovery if there’s been anyone there to witness it.  It’s completely involuntary and I can’t control or stop it.  Some of the first repeated words I can manage are “I’m sorry”, over and over, like I’m rolling the words around my mouth.  It goes on until I’m fully recovered or I fall asleep, whichever comes first, and can risk throwing me back into the meltdown because I start to cry again from the shame.  There’s the bright side of living alone – without anyone to see me meltdown, the shame is less (though never gone) and I can get over apologizing to myself faster than with other people.

Then, after some sleep, I’m usually ok.  A little residual headache and soreness, maybe, depending on how physical I got, but otherwise, I’m fine.  And life goes on.

That’s how my meltdowns happen and what they feel like.  Yours or your loved ones’ may be similar or very different, but they’re probably not exactly the same.  Do you go through the same stages I do?  Do you lose some other function instead of going non-verbal?  What helps you through it?  What helps you recover from it?  Parents of autistic kids, does this description sound like what happens with your little ones?  How do you get them through a meltdown?

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