OK, everyone. For starters, can I just reiterate something which people seem to gloss over: meltdowns happen in autistic adults, not just autistic children. You may not see them as often because we may be better at hiding them from the general public, but just sometimes you may see cracks in our armour and one will get through.
[TW self harm]
For me, meltdowns are much the same now as they were when I was a child: the crippling panic, the uncontrollable tears and shaking, the repetition of a phrase of thought on loop in my head, the need for space and silence. Added to that are some tricks I picked up in my adolescence to ease the pain in my soul: the hitting my thighs or walls, the digging my fingernails into my head, the rubbing my skin until it’s raw.
[End of TW]
It is real. It happens, for me, as much now as it did when I was little.
In the safety of my own home, I am learning better ways of recognising the onset of a meltdown and coping during and after the event. However, yesterday I had a stark reminder that outside of my safe zone, things are very much as they always were: we are far from acceptance, or even awareness, of autistic behaviours.
Based on my experience, here are five of my ‘don’ts’ with regards autistics in meltdown:
1. Don’t tell us off for shouting.
I have no perception of how loud my voice is at the best of times. Most of the time people complain at me for being too quiet, but in meltdown I regularly hear ‘Don’t shout at me’. I have no intention to shout, it just comes out like that.
During my meltdowns I usually progress from verbal to non-verbal as the stress builds. At the beginning, when I am still talking, I am spending a huge amount of energy processing words and trying to explain myself meaning the control which usually keeps me quiet has been forgotten in that moment.
Please try to hear the words I am saying no matter their volume.
2. Don’t call us liars/hypocrites/inconsistent.
Nobody processes information well when they are stressed. Expecting us to form fully-coherent, well-reasoned arguments whilst in meltdown is wholly unreasonable. By the same token as above, in the verbal stage of my meltdowns a lot of my energy is being spent trying to be helpful to the other people present and not ending up in a sobbing heap, rocking and banging my head against the floor. If some of my arguments are off, it is going to be best for me to revisit them another time.
3. Don’t demand that we explain what’s wrong.
It takes me a long time to figure out what emotions I am actually feeling and then to process what caused them. I need space and quiet to do this at a time when my emotions are not heightened. This may take days, weeks or months and as yet I no of no shortcut.
4. Don’t tell us to ‘stop it’.
Believe me, that is all that we are thinking of and trying to do. if we haven’t managed it it isn’t for lack of effort.
Now I am older, I can at times postpone the outwards signs of my meltdowns (with a shutdown) but the effects always come back later and it is usually worse for me. I try not to do that often for my own wellbeing.
5. Don’t say ‘You just need to …’
Whatever it is, however well-meant, there is probably no ‘just’ about it for us.
The most recent things I’ve heard in this vein have been:
– ‘You just need to set a reminder’ in respect to remembering events. Oh that it were that easy! Believe me, I have tried setting reminders, I try putting stuff in my phone diary, work diary, a physical weekly chart in my kitchen. I still forget stuff or double/triple book myself.
– ‘You just need to talk to them’! Ha! Ha ha ha! Yup, communication is that easy for autistic people. I’m sure much more has been written on this subject by others more eloquent than me, I don’t need to go into it now!
I get that your advice is most likely well meant, but keep it to yourself.
If you really want to help: ask.
In relation to my examples, ‘is there anything I can do to help you remember?’, or ‘can I help you to talk to them?’ would be an improvement in my eyes. But keep in mind that we may have no immediate answer to any of your questions during the stress of a meltdown.
These are all specific examples from my most recent experiences. The list is by no means exhaustive or universally transferable to every autistic person.