I have neglected my autism for too long – it’s time to change that

I started this blog as a daily endeavour, but recently there was a small hiatus. At the time, I was dismayed, and blamed the following week of poor productivity on dropping this key habit. This kind of thing happens often to me: I find a delicious rhythm and routine, and then something snaps off and the whole thing falls apart.

But this time, I think I’ve really cracked the code.

As I’ve mentioned several times before on this blog, I am autistic. Over the past few days, I went into a small autistic shutdown: my executive function plummeted, my speech and writing capabilities dipped, and my decision-making abilities were impaired. Many people would say I “regressed”, but this is a term I dispute.

If you had asked me about my autism a few months ago, I would’ve told you the following. Yes, I am autistic. I’ve known about it for about four years. I’ve always stimmed, whether that be chewing my T-shirts or voicing complex mental translative echolalia, but since I started meditating, medicating my sleep, transitioning and exercising regularly, my symptoms have lessened.

That’s the dream, right? Parents of autists crave it. The reformed child. People like to pretend that autistic adults don’t exist. Somehow, at the age of eighteen, we either are magically cured of our ‘problems’, or we vanish into the void. The mainstream perception of autism is so fundamentally infantalised that it is incompatible with the idea of real, human adulthood. Autistic adults are just ‘weird’, ‘awkward’ and ‘incompetent’.

This recent shutdown is the most autistic I’ve felt for years. It blindsided me, kickstomping my naïve belief of ‘getting better’ to the curb. I am no less autistic than I was before. I have never been any less autistic than I always was.

During my shutdown, I went into research mode. I scoured blogs online, starting tentatively by Googling “How to live a fulfilled life as an autistic adult?” and quickly getting tangled in a web of fascinating blogs by #ActuallyAutistic people. I thought I knew everything there was to know about my autism, and boy was I wrong.

Something that pretty much all autistic people do to some extent is masking. Masking, as the name might suggest, is hiding overt markers of autism. Faking eye contact, restraining stims, avoiding talking about special interests, laughing at jokes you don’t get, avoiding social situations that you’ll be incapable of manoeuvring. Over the course of my twenty-six years of life, I’ve become a fluent masker, to the extent that most people would never believe me if I told them I was autistic.

For a long time, I confused masking with what was being masked. I thought my ability to constrain and shape my personality and behaviour was a sign that they were actually changing. But masking has an effect, even if I didn’t feel it at first. It leads to anxiety, shutdowns and burnout, and in some cases, suicide.

That’s how it felt when I burnt out before, at university. That I’d failed. My mask was coming crashing down, and everyone was going to see how maladaptive and disgusting I truly was. And when my ability to mask came back, I was so eager to be seen as functional again that I ignored the razor-sharp nails that hold it in place.

Lightbulbs have started going off in my head. Were my binge eating and dermatillomania really separate health issues? Or are they the result of suppressing stims, a kind of socially-acceptable negative stim that takes the place of the visibly weird ones?

Yesterday I walked through town listening to Carly Rae Jepsen, lipsynching and bopping in a way that I haven’t experienced in years. I felt a joy rush back to me that I had forgotten existed. By painting happiness on my mask, I had tricked myself into thinking I felt it, when in reality I had completely leeched joy out of my life. It’s that kind of joy that is uniquely autistic, the hands-flapping, laser-focussed-special-interest, rich sensory profile joie de vivre.

Already I’ve noticed benefits of bringing in more stimming. Last night, my housemate came home with cookies she’d baked, and under normal circumstances I would’ve scoffed a few before bed, even after a large dinner. But by replacing that urge with chewing gum, another lost stim, I felt the desire naturally melt away. I’ve ordered a bunch of stim toys from Amazon, and I can’t wait to see what positive effects come from them.

Clearly, stimming in public, especially the stereotypical hands flapping, brings with it a strong element of social anxiety. But I’ve played to the rules of respectability for so long that I don’t think I can hold it in anymore. Sure, I’m still going to mask a bit in public, but fuck it, I’ll carry around a fidget spinner and bop along to stimmy music if I want to as well.

Something else I’m wondering about is loneliness. At my best, I can still only mask my way to a middling social competence. I can’t handle socialising in noisy spaces, large friend groups, flirting with NTs, or making new friends easily. Because of this, I’ve often felt a painful loneliness, that I’ll never be as socially supported as other people. Originally, I misdiagnosed my shutdown as this feeling, but as I moved towards more autism-positive behaviour and thinking, this urge subsided.

The thing is, I need a lot of time alone. My bedroom is a controlled sensory environment where I can take part in nurturing special interests without feeling judged. But in the past, I’ve forced myself to socialise way more than is comfortable for me, to fill in this lonely feeling, when in reality, if I spent time performing autistic self-care, and communicating with other autistic people, I would feel much more fulfilled and not so lonely. I’m incredibly sceptical at the articles and statistics that claim many autistic people feel lonely, because research and anecdotal evidence shows that, actually, we’re fine at communicating well between each other, and that we often just want to socialise on different terms. The implication of these articles is that we need to be integrated more into neurotypical social life, but I maintain the opposite: we must be allowed to create our own spaces and flourish together.

Special interests is another area where I’ve surpressed myself. As I’ve spoken about before, I have several very non-marketable special interests. As a result, I pushed these to the side to focus on writing and subsequently teaching, as they are ‘serious’ interests that will actually feed into my career. That’s not to say I don’t greatly enjoy them, but they are not the deep-brain kind of special interest, where I can zone out for hours doing research, and feel a profound feeling that I must do them.

Obviously, I can’t spend all day singing songs in Esperanto and making UTAUloids, and fuck me backwards that’s an issue, but I can, and must, eke out time to delve into my special interests, because they undoubtedly enrich my mind and my mood. And who knows, maybe one day I will be able to monetise them.

How ironic it is that masking, which is often encouraged by neurotypical practitioners as a way of integrating into a healthy social and mental life, can cause such negative addictions and emotions! Already, having just taken on this new resolve to be more actively pro-autistic, I feel infinitely more balanced and happy. That’s not to say there won’t be rough patches, but I feel like I’ve ignored this facet for too long in my quest of self-discovery. Even though I was celebrating my trans self, my teacher self, my creative self, I was stifling my autistic self, and it came to bite me back. In a way, I’m lucky that I didn’t get to a more serious shutdown before realising this, as now I can proactively perform the self-care necessary to prevent them in future.

So what will happen to this blog? I am going to continue it, I think, but not at a daily pace. I may very well work on it daily, but there won’t be daily articles. While I’ve really enjoyed putting work out there regularly, I feel like there’s a balance of quality and time and that for me it leans slightly more towards one to two articles a week. I want my content to be a little longer, a little deeper, and a lot zanier.

Because that’s it: I’m back at the stage of knowing how much I still don’t know. There is so much to learn about myself, about other autistic people, so many conversations to listen to and join in, paths to forge. I want to make autism a part of my life like it never has been before. Likely, that will be the main focus of this blog going forward. I hope you’ll join me for the ride.

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