randomly accessed memories

I have a different brain now than I did just 2 years ago.

In no way is this referencing my official autism diagnosis in January 2023. That just confirmed I had the brain I always knew. My diagnosis was not a surprise to me, but I also didn’t particularly seek one out. I didn’t have much of a choice. My work life, and by extension, my body health and personal life, was falling apart. After a conversation with a superior about why I would like to chill out under my desk a couple times a day (this was NOT a thing I’d do when distressed — it allowed me to avoid future distress!), I guess I was a bit too honest when I described how difficult everyday life was becoming for me. How it took all the energy I had just to make it to work everyday.

Ok,so here’s where you probably are assuming I had a low-paying crappy job with a toxic boss, so of course I experienced burnout. But no, here’s where my story diverges from the “common story” you’ll find on the internet (regarding autistic women in their 40s having a major burnout or mental health experience that lead to their autism diagnosis). This isn’t to say I’m a special snowflake or whatever, just that I still really don’t understand what happened because in all the stories like these I’ve read over the past 2 years, I’ve never seen someone else mention that it happened to them after they found their dream job.

But yeah, that was me. It was literally my dream job. One of the songs I was listening to at the time during my 30-minute commute into work was I’m on Top of the World by Imagine Dragons. That was how I felt. Like, how could I be so lucky to be able to do work I was decent at and felt so meaningful and where I had awesome, smart coworkers and even more awesome bosses? And I was so happy! I knew I was where I wanted to be for the rest of my working life.

The adrenaline fueled me for the first couple months and it was great. I knew that would end, but I thought I’d be able to adjust and get used to driving across the city everyday to put in a full 8 hours, and due to my difficulties getting up early, that meant staying at work till 6pm most days. By the time I got home, I was too exhausted to make supper. I’d snack on cheese and crackers while I played my computer games to give myself a break from being me. (That was, and is, one of the best activities for my mental health.) Then I’d go to bed at around 10-11pm in order to get the 9 hours of sleep I need to show up and be functional in the real world.

You’ll notice there isn’t any mention of housework or grocery shopping or paying bills, or doing any sort of socializing. Those could only ever happen on weekends, and even then would often not happen at all because I needed most of the weekend just to recover physically and mentally from the week.

Why was my dream job so exhausting? I was 40 and somehow that made me stop caring completely what other people thought about me. I was being my authentic self more than ever. I had worked full-time for most of my adult life at this point. Yes, I had worked from home for most of 2020 and 2021, and became very lonely and isolated (I found out that I get pretty much all of my social needs (which, being a 100% introvert on all tests I’ve ever taken, are pretty miniscule) filled by work, and remote work is not the same — my life was not structured for any other socializing). But despite all those changes, I had managed to take care of myself for the most part. Seasonal depression became a little worse every year, but I came to expect that and it made it easier to fight & manage. So you’d think getting a position change to what ended up feeling like my dream job would be good for me, right?

What I didn’t realise was that due to aging and other things, the amount of energy I had to apply to things like “coping with change” was extremely reduced from even just a few years before. I was exhausted every day, despite mentally feeling pretty good! As I got more exhausted, what I knew were my aspie traits (I’d been informally diagnosed by a former psychatrist at age 32) came out strongly. I couldn’t cope with any changes of plans. My skin was constantly dry and itchy and I couldn’t find any clothes that weren’t uncomfortable. I had to take off my footwear at my desk partway through the morning (which was probably for the best, because I wasn’t even trying to sit on my chair “properly” anymore and my feet were always on my chair). I started biting my nails again, and also scratching my scalp until it bled. My social anxiety, which I had mostly overcome by then, came back (which still confuses me because I really wasn’t worried about being judged anymore… but I guess there was more to it than just that) and I had problems even emailing people at work who I didn’t know. (Phoning was out of the question.)

Anyways, it all lead to people being concerned about me, and I agreed to take some time off to get actually officially assessed for autism and to come back to them with a list of accommodations that might help me.

It wasn’t supposed to take so long. A couple months at most. My work was willing to pay for the assessment, which was great because getting an assessment as an adult from public healthcare was nearly impossible. It ended up costing $5000. It didn’t tell me much about myself I didn’t already know by that time. Autism became my latest special interest after I noticed the symptoms seriously starting to affect me again after a time of relative stability/remission (for lack of a better word). But hey, now the diagnosis was official on paper now! (Bright pink paper, actually, because that was all I had in my house when I needed to print out the report, lol.)

But how does one come up with a list of accommodations for one’s dream job? I realised that I’d self-selected into the only type of environment I can thrive in. Nothing public facing, mostly technology I interact with. Most coworkers just as nerdy and while not as socially inept as me, definitely very far from the typical neurotypical extrovert profile. This was my place and my people. I already had flexibility in which 8 hours I wanted to work, which task I was tackling when, and I could take breaks when I needed to and choose when I stopped for lunch.

Yet it wasn’t enough to be sustainable for me. There were just too many work hours and not enough ‘recovery’ hours.

Dream job didn’t have a mechanism to do part-time, so after about a year of being “off”, I started going back to work in my old job, which is a 5min drive instead of 30min. I started at just 2 days/week.

It’s now 6 months since I went back to work and I’m now at 3 days/week. (Seasonal depression was pretty bad this year so I didn’t want to push my luck.) I do not in any way feel ‘energetic’, but I am still much better than I was. I am better at prioritizing my own self-care, which includes both things that restore me mentally and physically (computer games, reading and learning on the internet) and turning down things that would provide me with almost no benefit yet use a lot of energy. I spend a LOT of time just chilling with my cats. I need that time. If I try to cut out things like that to be “productive”, things start to fall apart so I’m learning how to tell what matters and what doesn’t and to be ok with “accomplishing nothing”. I also prioritize having the right food in my house at all times, so I don’t skip meals or eat only junk food. I struggle with strong food aversions at the best of times, and it gets way worse when I’m stressed or tired. There becomes little I can actually eat. Cereal and milk are always safe, so I always need to have both in my house. (Speaking of which, I need to get milk today.) So things are better.

But will things ever go back to how they were? “Autistic burnout” is talked about a lot on the internet, but the type I experienced was the long-term type. Where you’re existing day to day on “extreme battery saver” mode. Only the essential functions are working, and never at full capacity. This kind of burnout takes _years _to recover from, and a lot of people never really get back to how they were beforehand. It forces lifestyle changes. It often also forces job changes — I can’t express how lucky I am to have been able to keep my job through all this. But can I even do full-time again? There does come a time when if I can’t work how I did before, I won’t be able to stay at my job. Time is ticking and if I’m not back to full-time in 6 months, it will be much harder to hold onto this job, as administrative processes will start that are hard to stop or fight. So that’s my goal. I want to be “better” by Sept 2024. I want to go back to my dream job again.

But I haven’t talked about my brain changes.

These days, I will be in a boss’s office discussing some work and I will fully understand the problem and what I need to do. By the time, I get back to my desk, I don’t remember any of the details. It’s just gone.

This is where everyone says “ADHD!”, but dude, if you knew me, that isn’t my problem. Yes, ADHD can present similarly to how I function now, but it is nothing like what I was like as a child. My autism presented as more of the opposite: I was too focused, too conscientious, too rigid, and had extraordinary impulse control. In fact, my whole life I’ve been trying to make myself relax more and “go with the flow” and be able to choose risky things sometimes. Because I’m too far the other way! I do believe that autism and developmental ADHD are like two sides of the same coin. There’s a lot in common (and a lot of people have both, including probably 80% of my coworkers) but there are also opposing forces there. I’ve read a lot of accounts from late-diagnosed adults saying that as soon as they started treating their ADHD, their autistic issues got way worse. For me it’s kinda the opposite: when my autism broke, I lost just about all the things in my brain that made me successful in what I do. This inability to focus, poor working memory (I still have excellent long-term memory), and fidgety inability to sit still is all new to me in the last 2 years. (And BTW I know stimulants will NOT help me because it’s not actually ADHD.) So I’m trying to learn how to deal with that too. I’m still really thorough and detail-oriented and I analyze everything. But I have very little ability to direct my attention, so everything takes me way longer to do these days. Especially changing activities.

Holy crap, this is about a thousand times longer than I was intending, and I didn’t even touch on any specifics of things I’ve learned help me function. That’ll be another entry, I guess.

I typed this all on my phone and I’m too tired to really go back and proof-read right now. But no one really reads this blog yet so I feel I can get away with it. I definitely will be editing this later to be less rambly and more coherent. But hey, I’ve been needing to tell my story for quite a while now but have been unable to put it in words. This is a pretty good start, even if it is quantity over quality. ;P

More soon, probably. (Do you notice how vague that is? Haha.)

Edit, 4 Apr: I had to fix this because I noticed that I had opened a bracket and NEVER CLOSED IT! How horrible! ;) (Only half-kidding, this really does bother me.) Also, I did a word count for this entry and I can’t believe I typed over 2000 words on my phone! Wow, Amy. Please go to a computer next time, it’s not like you don’t have a zillion of them in the house. ;P PS: I need to redesign this website because I hate it again. :(

I have to make a new entry because I’m trying to test turning comments on with my theme/stylesheet but I have my blog to turn off comments after 6 weeks on older entries.

So now I can comment on this one.

Doing development on the production server is fun! Lol. This is why this site is totally not up and running yet.

Also, I deleted everything a few weeks ago because I hated it. Today I just reuploaded everything. I still hate it, but not as much.

I’m sick. Probably just a cold but my immune system likes overreacting so I feel like total shit.

The last time I was sick was in March 2020 (not covid though). I was sick for a week and I spent it working-from-home and watching the anime Cells at Work. I don’t remember how it was recommended to me, but at the time it was on Netflix (back then I had Netflix!) and I thought that learning about the immune system through a curiously scientifically-correct anime (that was based on a comic) would be apt.

I somehow dodged covid for nearly 4 years (and I highly doubt I have it now, though can’t say for sure). This is the first time I’ve been sick since then. I need something to do while I lie in bed and hate my existence. I no longer subscribe to streaming services (other than Curiosity Stream) but I have some downloaded stuff. Saw Cells at Work in my folder. Seemed even more apt to rewatch it now. Maybe my white blood cells will pick up some pointers too. ;)

Anyways, what I didn’t anticipate was how emotional it would make me. Kept making me tear up. And I still don’t know why. But I’ve learned that I can’t always figure out a reason for my emotions and that’s ok.

This entry was supposed to be a one-line “I’m rewatching Cells at Work while sick, just like I did in March 2020)”. Oops.

Maybe this’ll get me writing here more. Not every entry has to be all planned and polished… right, Amy? :P

Ttyl.

Things I’ve Learned From Starfield

• As long as the credits keep rolling in, life’s good
• Just because a place is called “Abandoned” doesn’t mean it is ACTUALLY abandoned
• Planets with 0.5 gravity or less are FUN
• Side quests can be good XP, but remember what planet they are from
• Main quests may be “main”, but they are never urgent
• Canuck brand is Canada’s legacy! Poutine!
• People won’t care if you break into their house and steal all their succulents
• Weight training is key (see: succulents)
• SUCCULENTS!!

Note: This an edited version of my reply to a reddit post asking how Level 1/Low support/etc. people experience masking and why unmasking is a big deal (but worth it). There’s a second part where I frame how an undiagnosed autistic person might experience meltdowns and what they might look like. All of this is aimed towards autistic folks who received diagnosis in childhood and don’t understand us old-ass adults who got missed because, well, _most _ people were missed back then; it was a different world in the 80s/90s. [insert some good-natured grumblings about all these young people today, etc.]

Disclaimer: This is based on my own perspective and generalized a bit with common themes I found in experiences with other high-maskers on the internet and in books. I am not intending to even subtly hint that all autistic people have this experience. I wrote it in an accessible way to make it easier to understand, but* it is my perspective only and I do not speak for anybody else*.

What is masking and why is it exhausting? — An analogy from a high-masking late-diagnosed autistic adult

Imagine you are left-handed but the only thing you were told all your life is that it’s “wrong” to use your left hand, so you’re forced to use your right hand for everything. (Aside note: I can’t believe this actually happened only 50ish years ago!) When you use your right hand, you might actually get pretty decent with it and you get used to doing certain things that way.

Now you’re 30+ years old and you’re told that it’s ok to use your left hand and embrace your “left-handed” identity if you choose to. Going back to what’s natural to you should be fairly easy, but it’s hard to mentally accept yourself after a lifetime of believing you were “wrong”. Especially if you feel like you “overcame” your left-handedness in many ways. So you have a lot of internal unpacking to do before you even try to do some tasks with your left hand. That’s unmasking, and why it’s hard. But learning how to unmask is absolutely vital, for the mental health reasons you mentioned. There are reasons high masking is associated with suicide.

[[Now my analogy breaks down here so I won’t fight to keep it.]]

Masking (ie. pretending to be right-handed) is and always will be exhausting, but if you have lots of energy and drive (or just anxiety – that is also a driving force) you get used to some things in life just inherently being really tiring. You may function (almost) perfectly as an NT on the outside, but you’re inconsistent. If you don’t get recovery time, your performance “slips” and suddenly you are getting meltdowns in public (you probably have always had them in private and consider them a character flaw you are embarrassed about), which gives you lots of real-world consequences. If you had a job, it’s gone. If you had a relationship that wasn’t absolutely rock-solid already, it’s gone. You start hating yourself and need all the support, but also don’t think you deserve any support because you are just a bad person. Everyone around you (who wasn’t scared off by your meltdowns) is very supportive of you, but they don’t understand why you can’t ride public transit, or go to the grocery store, or make small talk with strangers anymore. They saw that you have those skills! And you don’t understand why you can no longer do those things either! But it’s about the energy it takes. If you don’t have the mana, you can’t cast a spell (to use a gaming analogy — I’m obsessed with analogies if you couldn’t tell :S), even if you’ve learned that spell long ago and cast it lots of times in the past.

General life stress + aging slowly reduces your pool of mana. You need to cut down on your activities or somehow become more “efficient” at casting your NT “spells”, but they always take a lot of mana, no matter how long you practice them. Meanwhile the NTs around you can cast the same spells instantly with no cost. It becomes another thing you feel ashamed of.

You get to a point where your capabilities cannot match the minimum that is expected of you as a human being. (This happens at a different point for every high masker, but usually seems to be between ages 18-60. Your 30s and 40s seems to be very common.) You’ve probably been diagnosed with depression or anxiety by this point, if not, maybe this is that time. (For me, age 32.) Maybe you are on anti-depressants or had therapy that helped a bit. But that only delays the inevitable. You will hit this point again and again until all your resources for pushing it back have been exhausted. This seems to be when most adult-diagnosed high-maskers get diagnosed. (For me, age 40, though I had an ‘informal’ diagnosis at age 33.)

Then you have to rebuild all your skills, evaluate which of your NT “spells” you just can’t do anymore and figure out alternatives. The alternatives are the “unmasking”, ie. the skills that you should have learned in childhood to be able to get your needs met and contribute to the world (as much as you wish), but you were only ever taught the NT high-mana spells. Unmasking is the process of not necessarily unlearning what you’ve learned, but figuring out a better way for you to get the same outcome that uses less energy (mana). It’s hard work because there isn’t a real you under the mask — you need to build it. But once you do, life becomes much easier to face. I only unmask in private at home but it makes a HUGE difference. Once I learn how to relax, I’ll need to figure out which public activities that I used to do are still possible, and which ones aren’t worth it.

What do meltdowns look like in high-maskers?

Before diagnosis, most of us didn’t know to call them meltdowns. When we were young, some adults treated them like tantrums (ie. acting out to get what you want), or you were told that you’re just being “dramatic” or “that didn’t hurt” or “it isn’t too loud” or “you can’t leave the dinner table till you finish what’s on your plate and stop crying”. But when stresses build up, meltdowns will happen. If you see the build-up, sometimes you can either shut down or dissociate until able to go have your meltdown without the social consequences. (Only some people can learn to do this at all. It took me years to figure out how to monitor myself well enough.) But if you’re shut down or dissociated, your ability to mask goes way down (if not gone completely).

For me, this often looked like going to the bathroom to cry when there was some conflict at work that I couldn’t handle. Rage meltdowns were always harder for me, but in my early adulthood I learned how to channel the rage into crying so I could release the built-up emotion without hurting myself or other people. After a meltdown, I feel drained but otherwise mentally “rebooted”. Once the headache goes away and a bit of mana regenerates, I’m back to my baseline, which for years was fairly “high-functioning” so I’d just carry on… until it happened again. Might be months till the next one, maybe weeks, maybe days, maybe hours — it’s very different for everyone and fluctuates a lot in one person during different times of life. When I was younger, I figured out that if I was in a stressed out, depressed state, I’d get an average of 2 headaches per week. But when I was doing well, it’d be 1 headache per month. I used that to evaluate my own current state and learn how to express how my body and mind felt during those times. Now not all my headaches are meltdowns (but I always have a headache after a meltdown) but it displays the same principle that when you’re doing ok, you have enough energy and resilience to handle what happens to you. But there’s a point where it’s too much and you’ll pay the price. Note that I believe this absolutely happens to NTs as well, but they usually have a bigger energy pool to start with and a much better social support system — so the threshold for them is much higher and often requires exceptional circumstances or other mental conditions. For masked undiagnosed autistics, every day life is stressful enough that it builds up and it becomes even more frustrating to not understand what’s going on. That’s why the diagnosis is a huge relief for many of us — we learned that it’s not our fault, we’re not broken.