The storm didn’t really come in the form of a meltdown in the end. I was so exhausted that it morphed into a shutdown instead.
I’d had a really really busy day. The busiest in months. I went to play in a performance of Mendelssohn’s Elijah with a local choral society – playing my viola from time to time is one of the very few things I didn’t abandon completely when burnout hit. The gig entailed a three hour rehearsal in the afternoon, then being hosted at someone’s house for supper, then the concert in the evening, which also lasted nearly three hours.
I’d done a similar gig last December, but declined the supper invitation and spent the intervening time sitting in the car on my own. This time I braved supper – partly, admittedly, because it was done on a “get in touch if you don’t want to have supper” basis this time around and my “getting in touch” abilities are pretty poor at the moment!
So I’d had this massively long full-on day. I’d been totally open about being autistic and having mental health issues (I’m getting slightly better at talking about it all). I’d kept my sunglasses on for most of the day. I’d coped with eating while sitting on a proper chair at a table and even participated in the conversation over supper a bit. I’d left supper slightly early to give myself some space to be alone before the concert. I’d spent most of the interval sitting on the floor, wearing my ear defenders and rocking back and forth. And I had, of course, played all 90 pages of the viola part of Elijah – twice (perversely, although physically very tiring, that was actually the easy bit)!
I got home and downed a few glasses of wine and ate some cheese, then went for a bath.
And then felt exactly as I had done in the pub episode in Sudden Illness.
I suddenly felt absolutely dreadful, sat up in the bath, unable to keep still, and burst into tears.
And this is where what happens now deviates from what used to happen in the past.
In the past, I would have stoically continued, as I did in the pub, to act as “normally” as possible. I might well have ended up being sick, and would probably have got almost no sleep and have spent the night in bed lying awake, shaking, believing myself to have some sort of illness that I couldn’t quite rationalise. I have pushed on and on in such circumstances so many times.
And the result of that pushing has been a continual decline in my mental health, a continual drain on my energy, and the resulting burnouts and erosion of my functioning abilities. Trying to be strong has, in fact, weakened me. “Faking it until I make it” has not worked – in fact, the more I faked it, the less I made it.
So I sat in the bath and cried, and my husband came to investigate and found a distraught mess. He calmed me down and drank the orange juice that I had asked for not long before as I indicated that I couldn’t drink it. And he also realised that my ability to speak was completely gone. Fortunately he’s used to it – and actually rather reassured now that we know I’m autistic, having thought, for the last fifteen years, that when I didn’t speak to him for hours at a time I was actually cross with him for some misdemeanour!
Then I went to bed, and beat my head against the pillow for a bit, before finally settling down to sleep. And I did sleep, where, in the past, I would have been unlikely to.
The next day my words didn’t return until mid-afternoon. My system finally closed down, and I did little more than lie on the sofa and sleep from time to time. But I felt calmer. The tension had gone. The storm had passed. The air had cleared.
And now I understand why this happens from time to time it feels easier to cope with. I’m not getting ill in the same way I did when I tried to fight through and keep still and so on. Although, perversely, the behaviour I exhibit probably looks more disturbing and maybe even frightening from the outside, from the inside it is very different.
In the past, an outside observer would just have seen someone who seemed like they were unwell and therefore became quiet – I’d have looked as most people expected me to look. But inside I would have been feeling utterly terrible, utterly unable to comprehend why I felt so bad, and in a total state of panic and desperation.
These days an observer would see someone who was completely unable to talk, compulsively rocking, maybe flapping their hands, bashing themselves against things, and even (though I try not to do this too much) hitting their own legs and arms with their fists. The part of me that has spent over 40 years trying to fit into a neurotypical world knows that I must look odd, and even maybe distressing, to the outside observer.
But inside, these things calm me. Inside they feel instinctive and normal and OK and can very quickly make me feel much much better, better enough to settle down to sleep. Better enough to wake the next morning and know that it doesn’t matter if I still can’t speak and I have to draw a letter T on my husband’s skin with my finger to indicate that I’d like a cup of tea.
And he no longer thinks I’m just asking for tea that way because I can’t be bothered to ask properly. And I no longer force the words to return before they are ready, and my brain therefore has time to recover.
It still feels very new, because it is still very new, allowing myself to be like this. I know from reading posts on groups and so on that many late diagnosed autistic people struggle to allow themselves to be who they really are, after decades learning to live a different way. And I’m certainly not always finding it easy – the intersections with the outside world can be particularly difficult at times, and the change from the old life is huge. But I am determined to live as my real self – 45 years was quite long enough to maintain the act that so nearly killed me on many occasions.
So that is the way it now is. And my way is to allow myself to be as fully autistic as I need to be wherever and whenever possible. And to be open about it as much as I can.
And maybe it sounds really odd, but that actually makes me really really happy, because it feels so completely right.
The new life becomes more and more real as time goes on.