Sections within this post
- Introduction
- The lead up
- 9 to 5 struggles
- One sentence that started it all
- The pandemic and regression
- Ticking almost every box on an internet graphic
- My traits that had weight
- The diagnosis
- To be continued…
For my first ever series of blog posts, it made sense to start from where it all began - with autism being a lifelong and present condition and all. I was diagnosed as an adult, into my third decade - so what was life like leading up to the diagnosis moment? What signs were present without me or anybody else knowing or noticing?
The lead up
Out of university (college) and straight into the world of work, I was waiting for my struggles to get easier, as I got ‘used to things’. I often wondered why they didn’t - until one day, a fateful conversation was the catalyst for my eventual diagnosis.
9 to 5 struggles
Whilst my graduate work scheme was difficult by design (as it involved balancing full-time job placements and a part-time Masters’ degree), I got through it despite the ups and downs, and ended up with a permanent full-time role. It was identified whilst I was on the graduate scheme that I flourished in placements that involved knuckling down and focusing alone on something - so I was encouraged to look for analytical roles, rather than any ‘doing’ roles (for example, coding, despite having a computer science degree, was off the table). This was an accurate depiction of my work character - as I’m still in the analytical role I got once the scheme concluded.
Settled in nicely to the role, I was noticing that, yes, the analytical ‘leave me be to get on with it’ aspect of the role was a great fit and I thrived in it (and still do) - but the social aspects of work, the noisy office space, horrendous lighting, mentally-draining commute… never became easier. Any form of networking was avoided due to crippling social anxiety, small talk made me sweat so I became evasive of social contact and lived in headphones (which also helped me to concentrate in the office), and my commute was soul-destroying. Work-wise, no issue - all the trimmings around it, very much so.
Throughout working life, I tend to have spells of working totally fine, smashing the workload… and then I come crashing down with very little ability to concentrate on anything for some time (including hobbies and special interests). I often wonder if it is cyclical burnout - almost like I am on a constant rotation of boom and bust. Just existing in our modern world is exhausting as it is, being glued to various screens across most of the day, which I don’t think helps at all. On any given day, I always felt (and still feel) like it was a constant pep talk of “I’ll do what I can today” just to even get anything done.
One sentence that started it all
During a social event with some acquaintances in 2019, I had gotten to the stage of comfort with them where the oversharing started and my vulnerabilities came out (I was not drinking either). I started divulging how I struggle so much socially, not in a misanthropic way, but an anxiety way - which I chalked up to the various episodes of social rejection that I had dealt with throughout school and life in general.
Turns out as the conversation developed, I was also listing out a load of traits about myself that were also of autism without realising it. After a few rounds of back and forth, my acquaintance said to me, with no dressing up:
“Are you sure you’re not an aspie?”
Asperger’s Syndrome* was something I knew of as a couple of family members ‘had it’. There were a small number of other people I had come across in life that ‘had it’, both in real-life and depictions in media. In collective direct comparison to them, there was no way I ‘had it’ too.
* Terminology no longer used, it is now referred to as 'Autism Spectrum Disorder (Condition) - Level 1' although some may still refer to themselves as an 'aspie' or similar terminology, due to Asperger's being their original diagnosis).
The language used above was how I referred to autism as someone who knew very little about it at the time, and is by no means how I address autism in present day - I use identity-first language now.
The pandemic and regression
As mentioned above, 2019 was the year in which I was asked about being an ‘aspie’ - but also the same year in which COVID-19 was discovered and also when I permanently moved out of my family home. Within months of the fateful conversation, I got married, and then literally the week after that, my country went into mandated national lockdown.
As an undiagnosed autistic person, aspects of the lockdown were a godsend - with this, I am not meaning to gloss over the fact that the pandemic was a serious and impactful period on many lives, health-wise and otherwise. The social distancing, being forced to mostly stay at home… it was a breeding ground for special interests and hobbies to flourish, less disregulation, and less social batteries being constantly drained. However, when lockdowns got lifted, I really struggled with integrating back into ‘normal life’ again.
Spending all that time home meant it was a breeding ground for a lot of pondering and thinking, and so I began to dwell on those words - “are you sure you’re not an aspie?”…
Ticking almost every box on an internet graphic
In 2020, I was still referring to my potential autism as ‘Asperger’s Syndrome’, due to lack of awareness of the term being deprecated. The term led my self-research. I specifically wondered if Asperger’s presented differently in females, as the representations of autism that I was familiar with were all male-dominated. A quick Google search returned a table that gave me a pit-in-my-stomach feeling - nearly every trait in the table could be used to describe me with little deviation.
(Apologies if this is hard to read - may be more legible on zoom in)
I sent this graphic to my closest people, in a sense of wonderment and to also seek assurance that I wasn’t ‘going mad’ and that this was me to a tee. It fuelled my new-found special interest - researching and learning anything and everything about autism. I went on and on about it, with discouragement of reading into things too much in case it wasn’t ‘the answer’ I’d been looking for.
The research went on for a good few months before I had the courage to speak to my GP (doctor) about seeking diagnosis (will cover that in the next post).
My traits that had weight
Part of learning about my potential autism was working out which traits of mine were just personality traits, and which were reflections of my undiagnosed autism. This is why we often hear “everyone is a little bit autistic” (which I also hate, because it undermines autism) - the lines cross and blur between the two trait types.
From here, I will go into my most prominent autistic traits - briefly explaining what each one is from my point of view, and how I experience it.
(What is tricky with this section is sticking with a tense, because all the traits below are still present today and are what I identified whilst going through the ‘self-discovery’ phase of autism diagnosis.)
Masking / camoflaging
Going back to a previous post where I mentioned that I was singled out for ‘boring’ people with my special interests at school, it was clear that my response to this was to mask / camoflage my autism for the rest of my life. I learned hard and fast that my true self had to be concealed, in order to avoid any more singling out, potential bullying and ostracism.
Masking or camoflaging meant I would (and still do to some degree, depending on the context or company) tailor my conversation topics, behaviours, expressions and appearance in order to blend in with those around me and not draw any further attention to myself. The act of doing this is physically, mentally and emotionally tiring and over time, I noticed my sense of identity was becoming chameleon-like and having to keep any potrayal of my joyful interests inside was soul-destroying. The only time I felt like I could be my true self was at home. Everyone else outside of the house got a different ‘version’ of me.
An analogy I often use is that I am a garage door, in that some people get to see me fully open and have full access to my true self, and then others are either locked out completely or are only able to see a little bit of me as the door is not fully open. Again, whatever state the garage door is in depends on the context and company I’m currently in.
Meltdowns and shutdowns
I was finding in some situations that I was having a different response to everybody else, sometimes excessive and overdramatic in comparison. Examples of my meltdown triggers were things suddenly ending (big change incoming fast), fight or flight response and conflicts. The triggers are also the same for my shutdowns - which I tended to have more frequently than meltdowns (probably due to masking and trying to prevent an outburst).
Meltdowns for me involve an out-of-character voice volume increase, crying and pacing. Shutdowns are the opposite - an even-more meek voice or complete inability to speak (often misread as ignorance), remaining completely still and sometimes crying.
Empathy
A common misconception is that autistic people lack empathy - I just think we process it differently, and for some, it’s possible to be ‘too’ empathetic.
For me, I care deeply about the closest around me, but often can come across as not being in tune with how they are feeling (or could be feeling) and struggle when others are displaying emotion or attempt to confide in me. The signals are naturally missed and I have to actively tell myself mentally that “so-and-so could be feeling this right now and I need to behave accordingly”. Sounds robot-like but when you are fighting your own brain’s natural inclinations and are trying to be proactive in doing so, then so be it.
Special interests
I thought my interest in things was at a ‘normal’ level, but turns out that wasn’t the case. At any one time, I would be into something, and that something was usually any of the following - a particular band / musician / album, video game franchise, crafting hobby, or TV series.
Hearing a special interest (new or old) being discussed out in the wild makes my ears prick up like an alerted animal - sometimes I have the courage to wade in and discuss, but most times I get jittery in the desperation to do so.
If I cannot pursue my special interest(s), something ‘blocks’ me from partaking in them, then I get het up pretty fast. Or, I go the other way - quite miserable and withdrawn. Whenever I feel on the brink of burnout or my social battery runs out, they are my retreat for building my energy back up again.
Some special interests trigger me to drill down into a hyperfocus mode, where the world disappears around me and what I am engaged in - this seemingly happens when being creative (writing this website code and blog posts is an example). I often forget to attend to bodily needs, and if someone interrupts the hyperfocus, then I get really peeved.
Sense of justice and aversion to deception
Nothing gets my back up more than unfairness, an underdog losing or suffering in any way, lying or deceit… or being the individual on the receiving end of any of the above.
On top of this, it is almost impossible for me to be the one doing the lying or deceiving, especially in a humorous manner. I simply possess the opposite of a poker face.
Being naturally naive and gullible can often put you in vulnerable positions - this has happened to me on a few occasions in varying levels of severity.
Stimming
Stims are repetitive behaviours or actions that are done by an individual with the intent to ‘self-soothe’ or regulate oneself.
Some stims are harmless to the individual, whereas others can be damaging. My worst stims are skin picking and cheek biting. Other stims I ‘do’ are object fiddling, tapping, bouncing my leg and echolalia of meaningless sounds.
Focus on self
This one kind of links to the ‘Empathy’ section in that I can come off as selfish completely unintentionally. The hardest thing for me to get across is that while these traits make me seem like an awful person, these are natural inclinations and so most days I am fighting against them to not be like that.
I mostly chalked up the selfish affliction to being an only child - not for being ‘spoilt’ but from having no siblings to conflict with for resources and attention. Seemingly having most things you want with little friction, so to speak. In other only children that I have met through life, the selfish trait is definitely there - but mine felt rooted in the management of being autistic, ensuring my needs are attended to so that I don’t end up with a meltdown or shutdown, or to avoid anxiety. This way, I don’t become more of a burden to those around me.
The word ‘autism’ itself stems from the Greek word for ‘self’ so I guess the clue is in the name - but that doesn’t mean all autistic people are selfish.
Executive dysfunction
One thing I noticed on moving out of my family home was that chores are the bane of my existence. I cannot stand them. They’re often thankless, a huge pain in the neck to start, and just joyless from start to finish.
I had one(!) chore to do when living at my family home and even that was a stretch. That may come across as lazy, but I think that was already a battle to get me to do, so any more than that would have probably triggered meltdowns.
This strong aversion to chores could come down to both executive dysfunction and the fact that doing chores means less time being spent with special interests. Executive dysfunction consists of numerous manifestations, but for me, it is a mix of struggling to get motivated and subsequently staying on task, difficulty prioritising tasks in general, and issues with breaking things down step-by-step - especially if the task in question is something I don’t want to do.
Sensory issues
I always had sensory issues without realising that is what they were - a strong sense of smell and subsequent negative response to it, problems with textures (especially with food) and an aversion to sudden sounds or changes.
Being in the presense of strong perfume or freshly-sprayed deodorant makes me insufferable to be around. If there is a ‘bad’ smell, I’ve smelt it before anyone else despite being further away from the source.
Growing up, I was an incredibly picky eater - everything was ‘beige food’. If I had my way, I’d still be living off it 100% of the time but that probably isn’t a good idea in terms of nutrition. Also, baked beans or tinned pasta in sauce could not be touching any other food on my plate and had to be separated. As an adult, I’ve got better over time with some foods, but there are still others that I struggle with (for instance, I love the taste of mushrooms but the texture of them makes me gag).
Sudden loud sounds or the anticipation of them can trigger a meltdown or an ‘overdramatic’ response of some sort. I often put my fingers in my ears when there’s something like a loud alarm or siren going off, and the sense of physical anxiety relief from that small action is immense.
Perfectionism and control
The need to be in control of almost every situation definitely comes from as mentioned in the ‘Self’ section - in that I am constantly trying to push down meltdowns, shutdowns and anxiety responses. It could also explain why a lot of autistics have a negative response to change or unpredictable events.
Perfectionism had also been prevalent all my life. I’d say it is quite a detrimental trait too. Mixed with a need for control, it means delegating tasks to others is really difficult, constantly taking on too much, and then leading straight into another burnout. On the plus side, there is no doubt that your output is going to be to the best of your ability as a result.
It is also the reason why making blog posts probably takes me a lot longer to do than it would take the average person.
Sleep woes
Linking to the need for control is having to have everything ‘just so’ in order to be able to sleep. For as long as I can remember, the room has to be as dark as possible, so I always had some sort of make-shift window blackout and still do to this day.
I’m not sure how I lived without them, but from adulthood onwards, I started sleeping in earplugs to block out sound (this probably started from when we got a really noisy neighbour who frequently started to wake me up / keep me awake).
In summer months, I often struggled to get off to sleep again after waking to sunrise, so an eye mask is also in the arsenal.
Once off to sleep, I’m normally OK - but sometimes I can wake up too early and not be able to get off to sleep again (terminal insomnia). This has happened today as I’m typing this - I woke up on ~5 hours of sleep and couldn’t get off again as I thought it was a perfect time to get up and get this blog post written. If I’m deep in the grasp of a current special interest, it will sometimes get me up unintentionally early in order to pursue it. Other times, it is completely random and there is no reason for the early awakening.
Fuss-free appearance
In contrast to my pursuit of perfectionism in everything, my appearance isn’t something I’m meticulous about.
Being brought up with stereotypically feminine norms, values and gender roles, I often never felt comfortable being really ‘girly’ (and still don’t). Ninety-nine percent of the time, I don’t wear make-up or do my hair (other than brushing it and tying it up) etc. Sometimes, mood and occasion-depending, I will partake in those things, but for the most part, I cannot be bothered. For me, it’s a lot of time spent preparing for something shallow and temporary when I could be doing a special interest instead.
To fit in, I was often pushed to make an effort and be ‘girly’ but I never really liked it or saw the point. It was ingrained in me that people cared what you look like or how you come across, but as I reached adulthood, I really leaned in to the idea of fuss-free appearance.
The only thing I tend to do is a skincare routine - after twenty years of acne on my face that wasn’t letting up in my 30s, it was something I was forever conscious of and wanted to tackle (luckily the routine has worked and for random breakouts, I use a pimple patch). Now and again, I get suckered in to nail trends or new ways to do my nails - I don’t always have them done as the feel of something on my nails is quite a sensory ‘ick’, and half the time it doesn’t last due to the handicrafts I get up to.
The diagnosis
Next up in the series is the post you’ve been waiting for (probably)… the diagnosis. I will talk about how stockpiling all these trait realisations led to the first step of getting a formal diagnosis - calling my doctor’s office - and the diagnostic process itself.
Thank you very much for reading this blog post. I appreciate you spending time here on my corner of the internet. Hopefully you got something out of reading the essay above.
Stay tuned for the next part in the series and be the first to read it by following me on the social media links, in the menu bar, to know exactly when new posts are published.
Until next time,
