The social dilemma

"Socialising in groups feels like having multiple browsers open on a laptop screen for each person that I manually flick through to record, analyse, and recall data..."

My husband and I share an interest in the human brain. Whilst he dives into dense technical books about the right versus left hemispheres, I spend hours per day observing people, asking questions about peoples experiences, and absorbing information about neurodiversity. Usually, we meet somewhere in the middle, discussing our findings and fascinations for hours on end. 

Last night we had one of these discussions (they often present themselves at inopportune moments like right before we are meant to be going to bed on a Sunday evening!). It was sparked by what we had been up to over the weekend. 

We had been staying at Andrew’s parent’s house with their family. The plan was to spend two nights there. We’d arrive on Friday evening and leave sometime after breakfast on Sunday. 

I had already mentioned to Andrew’s mum that I was nervous about it because I hadn’t spent time away from home (except for a couple of holidays with just Andrew - which haven’t always gone to plan!) since I burned out and discovered I am autistic and have ADHD. It hasn’t been possible, and to be honest I was unsure how things would play out. Lucky for me, Andrew’s mum was understanding and reassured me.

I think this honesty up front was why I felt comfortable saying I had to go home on Saturday afternoon, early. I had been trying as hard as possible to push through, but I knew that if I stayed another night I would make myself unwell. Even by Saturday afternoon I felt I had pushed myself past my limit. It was lovely to spend time with family, but I knew I needed to be careful - the last thing I want is to slip back into burnout. 

Anyway, it’s not the details of the weekend away that are why I wanted to write about today. The interesting part is the conversation with Andrew that followed when we got home. 

Andrew and I have been together for six years. We met at work and started dating at what I now see was the peak of my just-keep-pushing-through journey with my private practice law career. Safe to say, he’s seen it all - he saw me break down at that job after a few weeks of dating, he saw me break down at the next job after we got a dog, he saw me discover my neurodivergence after we got married, and he continues to see me tackle daily life with complex trauma. He sees me for exactly who I am; the beautiful parts, and the dark parts. He’s the one person in this world who I’ve ever truly let in. 

So when it comes to challenges, he’s always there for me. He actions our wedding vows ‘in sickness and health’ on a consistent basis. I too, for him, but it is certainly fair to say that as a multiply disabled person the ‘sicknesses’ I face are more frequent. He carries it all with me, with grace. Everyday I am grateful he is my life partner. 

This context is important to our conversation because it gives you an idea of how well Andrew knows me. But it was clear from our talk that however well someone can get to know me, if they are neurotypical they will never be able to understand what it’s like to be me.

Now that seems obvious; of course he can’t, in the same way I can’t know what it feels like to be neurotypical like him. But there was a moment during our conversation where this really hit home to me. 

We had been talking about social group dynamics and what it is like for him and for me. He recalled when we first started dating, before I knew I am autistic, he’d notice that after leaving a group social event I’d always want to debrief. On the journey home we’d talk chronologically through the event - well, I say ‘we’, it was me! Andrew would listen and chip in but mostly it was me verbally processing everything I had observed, not understood and felt I got wrong about the social occasion. 

This became our normal and it wasn’t until I realised I am autistic that it made sense. For autistic people social occasions, especially involving groups of people, are usually intense experiences. 

There is no ‘relaxing’ into it, or ‘being yourself’. Mainly because, for me at least, I can’t switch off the part of my brain that is manually monitoring everyone at the same time, including myself. I’m scanning for social cues I might have missed, facial expressions I might not understand, tone that might give away how a question is ‘meant’ to be answered, body language for clues about people’s mood - all whilst trying to manually regulate my own behaviour in an environment that is unfamiliar to my nervous system and away from the comfort of my daily routine. This is me masking; a coping mechanism I’ve developed over the course of my life which is so engrained in social settings that it happens even when I say to myself that I’m not going to do it. 

I was stunned by what Andrew shared when I asked him what socialising in groups is like for him. He said he doesn’t think twice about it - not at the time, nor afterwards. In fact, he said that once he leaves a social interaction he rarely thinks about it again.

Now Andrew is not representative of all neurotypical people, but the fact anyone navigates social situations like this absolutely baffles me. In the same way Andrew is visibly confused when I explain socialising for me feels like having multiple browsers open on the laptop for each person that I manually flick through to record, analyse, and recall data, I am utterly flabbergasted when he explains there is no second order thinking going on for him at all. 

I had been struggling with negative self-talk after having to leave the family gathering early. Honestly, I was embarrassed and frustrated and upset that this is my reality. But this discussion brought such clarity of understanding for me - my brain requires so much more energy to function in day-to-day life than Andrew’s. Not only socially, as we explored, but also when it comes to decision making, planning, and sensory processing (and there’s more!). 

Going to someone’s house to stay for two nights for me is not as simple as throwing some belongings in a bag after work, popping the address in the sat nav, grabbing a snack on the way, and seeing what I end up getting up to. The steps for me have to be planned out in advance and scheduled, I have to make sure I’ve not done anything strenuous or outside of my usual routine for at least a week beforehand, I have to pack as many of my comfort items that I need to have any possibility of being able to sleep, I have to follow the schedule I created and hope nothing changes (else it’ll be very deregulating for my nervous system), I have to enquire about plans for the weekend ahead of time and hope people stick to them - all whilst socialising for longer and with more people than my brain can keep up with. 

Then there’s the inevitable recovery period. The week afterwards where I need daily naps, I have to take a step back from work to keep up with feeding myself and walking my dog, and navigating the emotional turmoil of re-regulating my nervous system through therapy and grounding exercises feels like it’s consuming me. 

All this to say: it makes sense. It’s hard to see when we’re in the thick of it, but it makes sense that these social gatherings are challenging for autistic people. It makes sense that we find it difficult to be present and enjoy ourselves. It makes sense we are exhausted all of the time. It makes sense we need help and support. It makes sense we have a hard time being kind to ourselves. 

When day-to-day life is easy to navigate for some; I’m quick to think it should be easy for me too. I am working on letting it be okay that I am less able than others. And I hope there will be a time when the conversations Andrew and I have on this topic do not involve me feeling inferior because, in the words of Chloe Hayden, I am ‘different, not less’.