I can be a very shy person when meeting people for the first time, especially those who I’ve had established relationships with on social media and known for years, but otherwise, I can also be excited to meet people and be a very open person when meeting someone too (not in the sense I am going to tell you every little secret about myself immediately, but rather open myself up to being friends with you, and that especially helps if we’ve connected on social media and already have that pre-existing relationship that I alluded to).
But I have those moments too as part of my autism when socialising that are cliched, stereotypical aspects of it but can still be a bit too much, even if they happen rarely for me. Sensory overload, shutdowns, meltdowns, etc. For the latter, you’d think they’d be for younger children who you think are acting up or being shitty, but as a 29-year-old, even though they’re rare, they can still happen. And when they happen, it’s not that I’m throwing a tamper tantrum that I probably would – and did – throw as a three or four-year old. It’s when your brain finds itself practically melting, processing too much stuff at any given moment (most of the time (but not all of it) as part of an anxiety-inducing situation at a social gathering to the point you have to go to the quietest corner in the room (or hide in the bathroom) with no-one around to the point it could (and can) emotionally upset you).
This was something that happened at the start of 2019 at the afterparty the night after my sister’s wedding. I was desperate to get back to my hotel room after that gathering and basically lose it after a bad night socialising and having the mask on of appearing normal even though the majority of the people at the event knew I was on the spectrum. A night where anxiety started massively creeping in, a weekend processing a lot of massive life-changing stuff and when there were people who weren’t there who I really would have wanted to be there (Spoiler: my mother who was probably the only person who understood my autism more than anyone).
I laid in my bed immediately after returning from the night out after and actually sobbed – not cried, full-on sobbed – for the first time in god knows however long it was for about half an hour or so as a whole range of emotions, memories and trauma over the course of a little over four years at the time finally exploded. Even when I emerged and decided to rejoin in the hotel bar some of the group who were out earlier, my mask wouldn’t stay on and I broke down again.
Basically, the gist of the above is autism can be an absolute dick when in a socialising situation. Even when masking to the best of your ability or when you think you’re doing okay when, actually, you’re not.
Today marks a year since my autism was ‘outed’, for the lack of a better term. As open as I am about my mental health struggles with depression and anxiety or being a queer man, my autism was something I was literally dying to keep secret until I went to the grave so I could maintain a perception of normality. A perception that I tried within an inch of my life to keep.
Because of all the things I wanted in life – friends who cared and appreciated for me; the opportunity to have independence and live far away; achieve dreams of mine I’d harboured for a lot of my life – I wanted to appear from the outside like I was normal, whether in social situations, being in public in shopping settings or even just among one or two people. If I then revealed my true self, the fact I was autistic, then those things I wanted, everything would be gone: the friends who I thought cared and appreciated for me would run for the hills and never look back, the independence I wanted for myself would look next-to-impossible, the big massive dream of mine disappearing because of a worry I wouldn’t be able to work with others in an office setting.
Unfortunately, it’s a perception I’ve failed at keeping.
Last year, I promised I’d never publicly talk of my autism ever again, instead just keeping any such conversations with the closest of friends who I trusted immensely. Such was my need to appear normal, desperate for things to revert back to the way they were pre-everybody knowing about it. But despite that, there’ve been times where I’ve talked on social media about it or given the notion that I’ve had a meltdown or shutdown (such as that time I had a meltdown when I fucked up a Chinese food order back in April after an incredibly bad day or when I was on the actual cusp of a shutdown in JFK in New York last October thanks to a dedicated travel debit card I was using that got blocked and was an absolute bastard to unblock).
I also have a very deep-seated hated of my autism. That may have come across already from what I’ve written so far here or from when I actually mentioned I have a hatred of my autism when I wrote my initial blog last year. Admittedly, although I speak for myself and only myself when saying these things, there are aspects of what I’ve said – last year and now – that verge on, if not actually fall upon, self-internalised ableism. Not my intent. And again, I speak for my experiences living with it and only mine. I don’t claim to nor wish to speak on behalf of anyone/everyone else who is on the spectrum. But it isn’t so much a love-hate relationship with it as it is utter despisement and resentment of it.
Over the past year or so, I’ve had to deal with two things in relation to my autism. One, the fact people now know about it outside of my family and closely-trusted friends. Two, I’ve had to come to terms with the fact that it is becoming more and more a prominent part of my life as an adult than ever before despite being diagnosed at a young age (around the usual ballpark of getting a diagnosis, though people can also get a diagnosis when older or as an adult). Even when its ruled over my head as much as it has over the past five-and-a-half years since my mum, the one person who I felt like understood me and my wares (my other term for my autism because I have said that word way too much already) better than anyone else did, died, it didn’t feel like it as much when younger or as a teenager besides school (which was a ride, let me tell you). Basically, there’s a lot of facets about my autism and myself I’ve had to reprogram myself for over the past year or two as a result of it and reconfigure a lot of aspects of me as a result. And still am now.
Without going into too many details because there’s a lot of shit I want to work on with my wares privately, I found out lately I was not great at being social. What I thought was me being okay-to-decent with it turns out, actually, nope, I was god awful. When I found this out, I was given a link.
This is Daniel Wendler. Like me, Wendler is on the autism spectrum (and has the same diagnosis as me, though I refuse to call it the actual term because of my despisement of the term because the doctor which it was named after being discovered as an actual Nazi a few years ago). By his own admission, he was an awkward kid who was bullied, rejected and lonely.
It was when he was a kid he got a diagnosis and that his difficulties in socialising came from his autism. I am obviously not a kid anymore. I am a grown person. But I was given the link in the chance to be better, both when it comes to socialising and social skills as well as just as a person. And I really, really want to be. But there’s another thing I’ve been doing as well.
As a result of watching his own talks, I’ve been diving into tons of TED talks on autism daily and numerous points tied to them. This is why I’ve cited and embedded a few of them here because they’ve opened my eyes on my own autism as they try and not only teach me to be better, but also work on my own internal, ableist mindset and resentment of my wares. It helps too that I’ve gone back into therapy for the first time in two-and-a-half years recently, although that’d been in the works for the better part of a year anyway, but due to NHS shenanigans and Covid, I’ve recently had to go private. Thankfully, I’ve already found someone who has past experience with adult autistic people and has been rather lovely and incredibly wonderful so far.
Admittedly, because of Covid, a lot of people – myself included – have had to rewire social interaction anyway and likely will continue to do so even when the pandemic is no longer a pandemic, when we approach the stage where we don’t need masks and where we don’t have to social distance anymore. Maybe this is a silver lining of sorts, that because there’s now no social events to attend, I have the ample opportunity, space and time to work away on all this.
I don’t want to say I’m never talking publicly of my autism again because frankly, I made that promise before and broke it. And I can’t promise if and when I do, it’ll be pretty or sugarcoated. But I am at least going to be mindful of what to say in relation to it. Because truthfully, like I said before last year, with autism, anxiety and depression, it is a cocktail of instability and unpredictability.
Earlier this week during therapy, me and my therapist discussed the bonafide hatred I have for my autism and that need and want of being normal. One of the things that was discussed was about turning that energy and hatred into something productive and positive.
Frankly, they’re right. Like I said during it, if I can’t learn to love or at least like my wares, the very least I could do is learn to accept it, live with it and use that energy in hating it and wishing I didn’t have it to something more worthwhile. That maybe I can turn it into energy for Play Diaries. For being more considerate and caring to myself and to others. And to learn to be at peace about it.
If I can get to one of those things at least by the end of the year, it’ll be worth it. To drop a quote from a TV show that only ended at the start of this year (remember January of this year?) that someone I care immensely about likes to tell me when they see me in a bad spot: “be nicer to yourself”.
I don’t quite know how I’ll get there. But I owe it to certain people to at least try.