Autism and Me

I wanted to take a little moment away from my games-focused content and share something a little more personal. A couple of years ago, right at the start of the pandemic, I was diagnosed with autism. This wasn’t much of a surprise to me – I’d actively sought out an assessment (though I had lingering doubts that I was wrong in my personal analysis and had somehow tricked everyone – it was a real relief that the assessor said I’d scored enough for a diagnosis just on the little test that they do even discounting the interview segments or the discussion with my mum based on how I was as a kid). However, it was impossible to anticipate how much and for how long it has caused me to reevaluate my life and my past.

I am still, over two years after the diagnosis was confirmed, continually reassessing myself and my pre-diagnosis life. I have to work very hard to be kind to myself these days.

At the end of January 2020, just as the pandemic was starting to look really scary, I was let go from my job. I absolutely loved my job and my colleagues and the company I worked for so I was really devastated. As I’ve done so many times before, I dusted myself off and started looking for another role. But it just wasn’t happening. I had so many interviews and with each one, the feedback was really gnawing away at my self-esteem and every application became harder and harder. I was told the interviewers didn’t think I sounded very enthusiastic; I was told they were very impressed with my technical test but the fact that I struggled to find the right words in the interview put them off; I was often taking hours to prepare a CV and cover letter, have very stressful phone screens, do at-home technical tests, attend interviews, to just be completely ghosted with not even a “thanks but no”. I even travelled to Reading (over 5 hours away requiring a hotel stay) for an interview only to find out afterwards that they never intended to hire me and had another candidate with much more nearly a decade of experience on top of me they were recruiting – but they had to conduct some interviews. They were a charity so they didn’t even compensate me for my train/hotel.

I applied for so many jobs that I could have excelled at, and was never given a chance. I know this happens to people all the time, all over the world, and there’s nothing really special about my story, but that, combined with the pandemic, combined with the financial stress, and the fact that March/April is always a kind of tough time for me for a variety of reasons, and I just kind of snapped.

This was the first time I recognised that I was suffering from an autistic burnout, although with reflection I know that it wasn’t the first time this had happened to me, just the first time I had the words for it.

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It’s very hard to describe autistic burnout to allistic (non-autistic) people. It feels a bit like a regression in some ways. Some autistic traits exacerbate and amplify things like stress and overstimulation that lead to burnout, and burnout, in turn, worsens the effect of these things. The stress of being jobless, all the additional stress and masking (hiding autistic traits) required for job interviews, the massive change in routine caused by losing my job and then again by the pandemic, the collapse of my social support network (I dunno if my friends realised how important they are to me) due to the pandemic. It was too much for me.

It feels like everything is now much, much harder than it used to be. Tasks with a lot of steps or a lot of uncertainty feel impossible. Going into the kitchen when it is messy causes an immediate spike in stress and a feeling of panic because I don’t know where to start, I’m so tired all the time that, to give an example, if I want a coffee, and the coffee maker needs a wash, I wash it then I no longer have the energy to make the drink. I had to plan a multi-day multi-person trip to London recently and just booking trains and hotels was so stressful. I used to travel all the time and it didn’t really phase me. Now it feels almost insurmountable. I can’t cook a complex meal from scratch anymore because having to juggle multiple timings and ingredients is too much.

At first, I really didn’t know what was wrong with me. It took a few weeks perhaps to admit to myself and broach the topic with my partner that what was happening wasn’t just the stress of job searching and then the pandemic, but something more insidious. I have thanked my lucky stars so many times over the last couple of years that my partner is kind, patient, picks up my slack, and has never asked me anything like “so, when are you going to get back to job seeking?”. He seems to be in a minority, judging by the sad stories I’ve read online.

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All this reflection has led me to wonder if the major depressive episode I experienced at 20 was, in fact, a case of autistic burnout. I was living independently, studying, managing my finances, trying to make friends and finding my place in the world. It would be no surprise. I can only really thank my friends for sticking by me through it all.

I’ve noticed through my life that when I’m focusing on different areas, other areas really go to hell quickly. It’s like I’ve never been able to spin as many plates as most people – I wasn’t even given the right number of sticks. If my career and my social life are going well, my personal upkeep (exercise, cooking proper meals, etc) declines. Good career and managing to cook and keep my home clean? OK but I haven’t seen my friends in 7 weeks. You get the picture. Lately, I feel like, during the “acute” phase of burnout, I snapped some of the limited numbers of sticks I had to begin with.

When I started streaming, I fell in love with it. Recreating a living-room feel of hanging out and gaming with my friends, meeting new people, having a tiny amount of income again for the first time in months – it was amazing. But I pushed too hard. I streamed four or five days a week for about 8 months, and then just kind of stalled out. I’ve been trying to strike a balance ever since, especially since co-founding Cosmic Hearts, my charity and advocacy focused Twitch Stream Team. It feels sometimes like my over-eager, new-special-interest new-streamer self borrowed functionality from the future, and now I’m paying for it.

I’ve been trying to write a paragraph here about independence and my financial situation, but it kept getting longer and longer because of all the context I felt I needed to add, so I’m scrapping it for now. Let’s just say that I’ve always tried to be very independent and through smart choices and a truly excellent support network, I’ve been able to retain that independence even through the toughest of times. Now though, I don’t feel like I have that. I think if something happened tomorrow that meant I had to live on my own, I would genuinely struggle to cope both financially, and personally. Maybe I could manage to eat every day, but that’s far from a certainty. As a 31-year-old person who has previously had a successful and fulfilling career, this thought haunts me. It rests, deep in my stomach, a leaden weight that keeps me awake at night.

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One of the other key things I feel like I’ve lost is a significant portion of my executive functioning. My ability to plan, balance priorities, to regulate myself. I’ve been late or missed appointments more in the last two years than in the previous 29 years of my life. For anyone who doesn’t know, I found a handy definition of what executive functioning is (because I didn’t know until after my diagnosis):

Executive function is a set of mental skills that include working memory, flexible thinking, and self-control. We use these skills every day to learn, work, and manage daily life. Trouble with executive function can make it hard to focus, follow directions, and handle emotions, among other things.

It kind of ties into a lot of the problems I’ve been facing. And it’s made even more complex by the apparent divide between “executive function problems” and “executive dysfunction”. This isn’t something I really understand, but I’ve heard differing descriptions for both and know that if they are different things, I have both issues.

A core example of how my executive functioning is fucked at the moment is that I lack the impulse control not to suggest a takeaway if my partner seems tired and doesn’t want to cook. I then will frequently be close to tears trying to choose what to have. I will spend 45 minutes browsing Deliveroo feeling increasingly worthless and useless and stupid.

It might be hard for some people (it was for me) to understand the difference between laziness, procrastination, and executive dysfunction. Laziness is basically deciding not to do a task and being fine with that; you don’t want to do it, someone else will do it, whatever. Procrastination is wanting to do something but putting off doing it because it seems hard or boring or you have something else to do. Executive dysfunction is more like, you want to do the task and you intend to do it right now but your brain just says no: there’s no good reason for this. Yesterday I wanted to take a shower and then stream. I was finding it hard to drum up the energy so I figured I’d play a video game for a bit. But nah, I couldn’t even do that – I was allowed to sit and browse Reddit for four hours, an activity I don’t particularly enjoy. I was able to put a video on in the background at least?

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I feel like I have been very, very flakey recently. Cancelling streams, taking three weeks to edit a podcast, not doing social stuff with friends. I don’t know why, I haven’t been able to trace it back to anything specific. It might be the fact that I somewhat recently started therapy and also signed up with a personal trainer to try and put my life on the right track, and in typical me fashion, am using too many plate-spinning sticks on those activities and not saving enough for other things. I came close to suggesting that my partner and I go home on Monday evening after dinner out instead of the gig we’d been looking forward to for months, just because it’s so much easier to be at home. I’m just so worn out.

I feel a little bit like an old mobile phone. A full charge used to take 4 hours and last for 12. Then as the phone was used more and more, maybe it took 5 hours to charge. Then it took 5 hours and only lasted 10. It feels like my charging time to energy provided ratio is skewed in an extremely unfavourable way.

This might surprise a lot of people – if you don’t watch my streams or hang out in my Discord, you might never have heard me mention this beyond a few Tweets here and there. But it has been eating away at me recently. The last month or so of feeling this way have been quite a harsh reminder that autistic burnout is very hard to recover from, with some people reporting that they never quite return to the same degree of independence as before their burnout. It’s genuinely very scary to me. So if I’ve not been the greatest friend recently, especially to my oldest pals from the Lancaster days; or if I’ve been very inconsistent as a streamer, content creator, or collaborator; or if I’ve just seemed “off” to you, I’m sorry. I’m trying my best, but sometimes that just means getting out of bed and putting clean socks on.

It’s actually really difficult to put this out into the world. It feels embarrassing, almost, to admit to my friends who are all very smart, excellent people who are having kids and getting married and signing deals and such, that last week I cried because I couldn’t choose a takeaway. But if it sounds silly to you, imagine being the person who gets to the point of tears at something so trivial. People are prone to laughing that I always get the same few things over and over again, but this is what happens when I try and “act normal”. I’m just so tired of it all.

Thanks for reading. I’m happy to answer questions, just drop them in the comments below.

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PS. Sorry that there are no pictures in this post to make it more interesting/engaging. I can’t take a photo of my brain struggling to process the annoyance of a label on my shirt.