Autistic Social Hangovers

Since the pandemic I haven’t often felt disabled by the world in the same ways as I did before. I have routine and patterns and I work from home the vast majority of the time.

But there will always be events that I need to attend that leave me with the difficult decision; do I go and suffer, or do I bow out and miss out?

I went. It was worth it. But I am broken.

I am a ridiculous human at times: if I’m not actively in pain then I start questioning whether I’m autistic, if I’m in pain, then I feel angry at how restricted I feel.

I plotted and planned and did all I could to reduce variables, script conversations and have the day planned out. I booked the day after off work to recover as I knew it would be a lot, and I put my all into it – first in the room and last to leave.

It was a brilliant event that celebrated the importance of including all neurotypes equally. It couldn’t have gone better. The organisers let me see the room before the crowds arrived, they reserved me seats, they allocated an extra ticket for support. They did what they could. But it was loud, bright, crowded, intrusive and despite full permission to escape and a quiet room available, it was a lot.

I masked and sat as still as I am capable of. Every muscle was clenched (in a relaxed-looking pose) and the levels of noise kept a constant scream alongside my bright conversation. The sensory bombardment felt like trying to engage in a room full of wasps.

It was still worth it. I got to meet people in person who I had only met virtually. I got to experience the kindness of those people asking if I would like to be hugged rather than forcing a hug or a handshake. I got to interact on my terms with no pressure beyond that which I placed upon myself. I got to feel heard and respected.

And then came the collapse. Having burnt through my processing, revved my brain to overheating, and put on my very best mask to hide every single instinctive flinch, it came to an end.

People talk about social hangovers in a jokey way, but it was the nausea that came first. I realised I couldn’t eat or drink anything, the sensory impact of it was too much.

I wanted to zone out but there was a three hour drive home first. I wasn’t driving but the nausea meant I had to watch the road. Through the darkness, with the blinding lights of other cars and no way to turn the world down a little.

There was all the processing to do, I ran over and over, analysing every interaction – had I missed anything, responded incorrectly, missed a social cue? So many opportunities to get things wrong, so much work to do to perfect the system. I do not process social information automatically, so if I want to do it, it has to be done consciously.

Painkillers were already struggling to touch the throbbing headache. It swelled from behind my eyes to my temple and kept time with the crunch of tyres on gravel.

Driving down that morning had been a joyous scene of autumnal oaks and birch trees. The rich oranges and reds had soothed and centred, but now it was all headlights and brake-lights and the soft edges had torn to be jagged and sharp.

You would think after all that that sleep would come easily, but not to me. Despite my careful routine and my perfect bed, I only managed a few hours. There was too much noise still to process and work through.

The following day meant bed rest. I hate days like that. They feel wasted and useless. Usually I can recharge by doing things that I love, but on days like these all I have is the pain and all I can do is stay still. I keep the blinds closed, I don’t sleep because sleep never comes easily to me. I keep sensory input minimal and manageable and I rest my over-used mind.

I worry that days like these are hidden. Those who know I’m autistic will have seen me out and about. They will have seen me interact, socialise, be present in the noise and pain. They will have seen me smile and nod and gesticulate. They will have seen me looking… well… not that different to everyone else.

They won’t have seen the consequences of that. They won’t see the cost. They might misunderstand that there is nothing I would not have paid to be a part of that day. That it meant the world to me, and that I genuinely enjoyed it, but that I had to be willing and able to pay the price of being there to be included.

I am the dichotomy of the autistic whose interest is people and their interactions, but who can only be in those spaces for short bursts. It’s hard not to mourn who I might have been if I could be present. ‘What ifs’ is a dangerous game to play. ‘What if I worked differently?’ I don’t. I cannot. But the world can.

I do not know how to make those spaces truly inclusive. I could have sat at home and watched virtually, but I wouldn’t have been able to engage in the room. We would need some kind of fully augmented reality to be able to make such things accessible without the damage.

It’s been three days and my head still pounds. I’m out of bed, but only just. I feel like I’m recovering from being ill – that point when the germ-warfare has been won, but the exhaustion and unwellness linger on.

I made no plans for this weekend and I know this low energy and inability to cope with sound or light will linger for a few more days. I have overheated and for a little while I’m not going to be able to go at anywhere near my usual speeds. There has to be balance, and it will return, I just can’t push it.

I remember a time when I worked in open plan offices and every day was a new gift of the pain I felt this week. Without the joyous bits.

I remember feeling this tired all the time, I remember how all my spare time was spent recovering from work, and all my joy was leeched away from me. It’s a reminder that in some ways we have come a long way (if you can find work that takes accessibility seriously).

When I feel like this I’m reminded of just how easy it is to internalise the frustration, and to compare myself to people who work differently. But I also remember the fear and confusion when I didn’t know why I got so “ill” after such things. Not knowing who you are takes a terrible toll.

I am focusing on the good things instead; I can focus on how this event was a choice. I can focus on the kindness of the organisers, I can focus on the positivity of the day and the wonderful people I spoke to. I can focus on the relief that my normal has shifted so far from events like these that they are a rarity.

Yes it is a reminder of my limits. Yes there are things I would like to do or be that I cannot see will ever be accessible to me. Yes there is frustration. But there is also acceptance that different ways of being are valid, and I will keep fighting for that with every spare bit of energy that I have.

Days like this widen the gap that had seemed to have almost vanished from my day-to-day.

If in a decade we can go from my work life being totally inaccessible to mostly accessible, then I feel certain that the fight for complete accessibility is achievable. Not today though. Today is for hiding and resting.

Tomorrow is for changing the world.