Licence to awkwardness

--- I'm autistic but it's ok ---

This summer, with age 34, I got my autism diagnosis. I've not been in a good state in the past years, and getting the diagnosis seems an important key for making sense of the difficulties I experience. In this article, I'm going to summarise what I learned since my diagnosis, giving special attention to autistic burnout.

I’ve been struggling with society norms and expectations for all my life. I didn’t learn about autism until maybe 4 years ago - so, for most of my life, I’ve been pushing myself to fit in. It has been a daily struggle, and it drained me up to a point where things just didn’t work anymore. I’ve “met the wall”, without knowing or being able to put a label on it, probably 4 times in my life: In my teens in school, in my early 20s in my job in audio production, in my mid 20s in an internship and then, with 30, in France when crafting handpans. I gave up these jobs and had periods of 1-2 years of downtime of feeling like a failure, but never really granted myself actual downtime. I mean, 1-2 years, seriously? Who on earth can afford that…?

A few things which caused troubles for me:

Very irregular sleep. Managing a day after insufficient sleep.

Finding programming easy, but struggling with tasks which are supposed to be easy: Driving a car, phone calls, paper work.

Suppressing talking about topics of interest.

Keeping up attention in polite conversations, or slow lessons.

Being unable to fake a smile, or to lie.

A need to speak up honestly and point out inconsistencies.

Assuming equality.

A tendency to get hung up in details, loose perspective and get drained.

A massive, painful resistance to obligations and schedules.

Needing to function on an alarm clock.

Conversations in noisy environments.

Changing from one activity / surrounding / setting to another.

Functioning on time pressure.

Finding speaking exhausting.

My brain repeating conversations, movies and music in unending loops.

Incapability to shut off from unsolved disagreements, or finding sleep.

Pop music.

Persistent itches and skin inflammations.

Unexplained ear noise.

Managing cold, pain or feeling hungry.

Medicine not working well.

Not knowing how much detail to give in a conversation.

Feeling respected.

Social isolation.

What reads like a funny bunch of challenges has, over long term, serious consequences which result in limitations in personal and professional life. After a line of drawbacks, it’s an incredible relief to realise that it’s not only me who, somehow, fails demands of society. Many of my autistic traits are so common that they are literally in the books, given the books are recent enough that they take autistic females into account.

Basically all of my friends are somewhere “on the spectrum”: On the spectrum of autism. It is called a spectrum, because autism does not equal autism - autistic people can have very different needs, challenges and strengths, and it strongly differs from person to person, or even day to day, in which ways we are “functional” and in which ways we aren’t.

Sensitivity and suppression

Autistic people seem to have a wide range of sensitivity - some being overly sensitive to certain stimuli, some being basically numb. In any case, there seems to be a difference in how we perceive sensual inputs. I seem to be very sensitive to basically everything (light, sound, certain smells, touch, cold, feeling hungry, stress, pain), so I feel drawn to environments / activities / music of low-stimuli, while some of my autistic friends don’t seem to feel a lot, and so seek out high stimuli to keep their brain engaged.

It seems common for autistic people to have troubles making sense of their sensual inputs. To me, this seems to be caused by habits of suppressing: Adaptions when being very sensitive per default, but confronted with demanding environments (noise etc). The trained habits of suppressing might be completely automatic, and happen unconsciously, to a degree in which we might feel stressed, or uneasy, without knowing what is making us feel stressed. F.e. it seems very common to forget to eat and drink. We don’t realise that we’re hungry until it suddenly gets so overwhelming that it’s impossible to continue whatever we were doing. At this point, it is already really difficult to think clearly, making it tough to put a meal together. I also used to have massive problems detecting when I need to poop, and I’m pretty sure this was caused by a habit of, permanently, clenching the muscles in my pelvis. Up to recently I wasn’t even aware that there were muscles, until I learned to force them to relax. Why would you get used to clench the muscles in your pelvis? For the same reason you clench your muscles when you’re cold or uneasy. To feel less. To feel ready for whatever arrives. To not feel confusing intimate sensations that don’t seem to belong into social settings. I wanted to be elegant and strong like a ballerina, and tough like a hero, on the daily challenge of enduring school.

Social intensity

Tuning out is a strategy learned in countless slow school lessons and dinner conversations. To me, it was incomprehensible to realise how others tend so spend a lot of conversation energy on bragging about their latest drinking excesses, or on the neighbours’ habits, or even worrying about arbitrary stuff like school grades - but then, can’t be bothered with the greatest thing in the world (Trance music). So, once we learn to shut up about our special interests (spins), daydreaming becomes the strategy to keep the mind engaged and awake. It’s not a good strategy, obviously, and causes problems later in life. I was so used to tuning out that I had major troubles staying present, even in situations which I wanted to enjoy.

Once used to this comfortable state of detachment, it can be surprising to suddenly be called back into the social situation, and need to participate. When I need/want to speak, I can get painfully nervous, start sweating and, mostly, first of all remove a layer of clothing (which I then put back on after I have spoken). Keeping and speaking my thought requires a crap ton of focus, like trying to hold water in your hands while walking. That’s why I don’t keep eye contact while speaking - I stare into an empty space. Once ended, my mind starts replaying what I said - double checking it for possible ways in which it was incomplete, inappropriate, or could be misunderstood. These flashbacks - short moments in which I feel I might have done something stupid (again), or offended someone - are intense like electric shocks, and make me miss out parts of the ongoing lesson, or social situation I’m in. Until I got my diagnosis, I thought that this - and many other of the things I experience - are the way things work for everyone.

Why are social situations this intense to some autistic people?

Firstly, there are many subconscious things which happen during a conversation - when to hold eye contact and for how long, when to speak and how much detail to give, how to make others feel at ease, the tone of your voice, and so on. It is written that autistic people tend to lack intuition for these things - and so, use conscious brain power on these processes to make up for it. This is very exhausting.

Secondly, we tend to be very self-critical because, classically, we have accumulated an over-average amount of experiences of rejection, and so watch our own social steps with great caution. Not all autistic people are this introverted or socially sensitive. If you are, it’s likely you can manage much fewer social situations than others, but the ones you have weigh more heavily. If I can push myself to be social once every other week, I have fewer occasions to make friends / create real-life connections than others. So on these occasions I feel strong pressure to perform well, to leave a good impression, to not make mistakes - because if I do, I will beat myself up about it for a long time.

Maybe, when seeing how social life can turn into a kind of game which needs speed and attention and is unforgivable for mistakes, it gets obvious why an autistic person might prefer messaging and emailing to get something across. How nice is it to follow your own pace, take notes about every aspect you think is important, double-check your text before sending it and skip the whole distraction of non-verbal things!

People tend to say: Being unable to lie and to pretend? This seems a good quality to have. God said you shall not lie, isn’t it?

But making this guideline a standard, in a society which does not follow through on it, tends to cause a surprising amount of friction: No, I’m not well. No, I’m not enjoying myself on this party. No, I’m not a team player, and not stress resistant at all. No, I don’t think this idea of yours is a good idea. And yes, I think you need to stand up for yourself and tell your boss / partner your opinion.

The many hypocrisies of social life can be frustrating to an autistic person. To us, the world would be a better place if people meant what they said, if political decisions were made with the intention to make life better for everyone, if gender and social status did actually not matter. “Don’t do unto others” sounds like a great rule which makes sense to me, and it is frustrating to find out that it, obviously, does not apply to animals, or to people we don’t know, or whenever the consequences of our actions are not directly visible (keyword pandemic). It can be our idealistic attitude to rules which may make autistic people seem a bit naive, but, to me, there’s also a general feeling of moving around blind in social territory. Assuming that people mean what they say makes it difficult to set apart polite play from true interest. Assuming equality and mutual respect tends to cause troubles when talking back to your superior / prof, or when speaking up for f.e. female issues.

To quite some autistic people, our aversion against hypocrisy extends into relationship standards, and it’s not uncommon to search for alternative relationship concepts which better fit our need to be thoroughly honest with ourselves.

Dysfunctional phases

For as long I can remember, I had days, or phases lasting longer, on which I fail to scoop up my brain. This may be true for everyone up to some degree, but for me it was extreme. It is usually connected to bad quality sleep. It does not only turn me tired. It turns me helplessly, painfully dysfunctional.

On these days, nothing works. It's like a lingering headache. I am extremely scatterbrained. I can't add numbers together, I have troubles speaking. It's painful to try to focus my sight. I fail to read a paragraph of text. The daylight hurts in my eyes. The lights in the office / school hurt in my eyes. I can't stop scratching myself. There are only fragments of thoughts. It feels as if wide areas of my brain are inaccessible. I am just a step away from breaking into helpless tears or anger. Making a simple call, or going to the store (or doing anything useful) feels unmanageable. Feeling a bit cold paralyses me, and I get confusing signals from my body, not sure if I'm hungry or not, if I need the toilet or not. My sense of coordination is messed up. When I need to push myself out for appointments, I risk to loose my belongings. There's no enjoyment to find in anything on these days. It feels as if my brain is stuck in a bad position, producing an unending stream of bullshit thoughts and refusing to stop pushing for a solution (which is, of course, completely pointless in this state). It also refuses to let go and fall asleep, eben if deadly tired.

Few people have met me in this state, which makes it difficult to explain how big of a problem it is, and to get understanding from others. These phases, over the past years, have become more and more persistent, until it felt like my basic state of being. I’ve been talking to doctors about my “strange migraine”, but it didn’t really fit. It interfered with every aspect of life you can imagine, and turned me unable to take care of myself, without any obvious reason. It was incredibly frustrating to see myself loose the ability to focus on making music, drawing, even playing pc games, and everything which makes life enjoyable for me.

Fortunately, my autism diagnosis this summer pointed me at something called autistic burnout. It seems to be pretty common in autistic people who get diagnosed late (= once in a state bad enough that autonomous life doesn’t function any longer). It is the result from years of working against your own needs while struggling to meet expectations of society. Being out in public every day, for example, or not knowing how to relax.

Autistic burnout is characterised by the loss of skills and memory which I experience, which also sets it apart from professional burnout - though both can occur at once. It is also common to have extreme swings between bad phases, and good phases in which things work almost normally, and it’s easy to get tricked into believing that there’s no problem anymore.

Acute phases of autistic burnout have certain triggers, which depend on the person - it can be overstimulation, appointments, sickness, hormonal shifts, arguments and probably more. It is especially risky when several of these triggers occur at once. Autistic burnout, when not being taken care of, can also evolve into a persistent, long-term state. For me, as frustrating as it is, it is motivating to finally see that there’s a pattern in it, and that I’m not the alone on earth struggling with it. There are things which can be done to break out of the bad loop.

Mistakes

I understand that my brain slips into dysfunctional mode on occasion, because I could not learn to actually listen to my needs. My need for extended downtime in between social obligations, for example, seemed socially simply unacceptable. After exhausting myself in my first job in audio production, I tried switching to part time work to create some space - but there was neither the option for this in working in media, nor understanding in my circles. So there was no other choice than pushing myself even harder, to, somehow, make myself function. Even worse, I constantly pushed myself in my free time, because at some point you need to make your music when you want to get somewhere with it, right?

I never watched movies, and played games rarely (and mainly as an occasion to be social online). As a rule, I tried to progress one project or another, or learn something, or do house keeping, or anything useful. I tried to label my writing and game design projects as relaxation. It was activities my mind deeply enjoys and demands, but I’m starting to understand that it was not the relaxation it needs.

In an audio book (How to not always be working, by Marlee Grace) I found the suggestion to redefine what, for you, work is and what relaxation is - because the assumption that work is what is paid, and relaxation is everything else, is very very problematic. Also house keeping, cooking or taking care of family can be work for you. It’s embarrassing how much I, who thought had some advice to give about life balance and creativity, needed this advice. But what is relaxation then?

My mind did not know. It was crying to progress this and that, start new projects, pick up new instruments, take new courses. It refused to accept that it was neither in a state to take in anything more, nor to produce anything useful any longer.

The conclusion that I could not keep pushing myself this way was not surprising. It fits what I, inside, knew since my early 20s, but was not allowed speak out loud. What was new was realising that my experience of struggling so hard with daily expectations is not the life experience of everyone. It is an autistic mind being more sensitive, and having different needs, than the average society.

It was a tough lesson this year to learn to put aside the things I wanted to do, but also the obligations I was failing with since years. I need to accept that the idea of living independently (financially), for now, does not work, and actually never really did. Like generations before us, we can only evolve within the spaces society enables us to reach. These spaces, today, are far from equal. They are a privilege to healthy people, people who found their place, who are at ease staying with others. Who can afford eating at the restaurant, or paying this retreat. I often feel like a guest in life - someone watching the show, but being unable to really engage in it. I do have very happy moments, though, on many days, within my small patch of quietude. Watching the show still may be worth it.

Unwinding

It is important to understand that we might not be aware of what exactly causes the overload reaction. I don’t consciously feel stressed by noise in public spaces, or by hormonal shifts etc., or a bad talk, it is just very common scenes of life. This makes it hard to get aware that these scenes are related to feeling drained and overwhelmed, which can pull me into a dysfunctional state. Autistic people recommend learning to watch your warning signs (which can be f.e. stomach pains). I’m not sure yet what are mine. In imminent or acute phases of burnout it is recommended to withdraw into a dark and quiet space for a short or longer period, disconnect from online if needed, and to really not push for anything. This helps to recover from sensual overload, and allows the brain time to process whatever needs to be processed. It is also recommended to make an emergency self care list of basic things which are good to do when in this state, something to come back to in moments in which making reasonable choices may not be possible. I’m still scouting for more good advice on autistic burnout, and will add recommendations for books when I find some good ones.

I seem to also experience a kind of super strong hangover after social situations which were intense in a good way - a few days in which my mind seems to have a need for processing impressions by repeating scenes and making sense of emotions coming up, and comes up with all the things which would have been smart to say. I feel a drive for action on these days, while my mind is not really “there” to take these actions, which can turn me very frustrated with myself.

Learning to switch into self care mode, I deliberately put aside everything on my to-do and want-to-do list. Instead, I choose, depending on my energy level, a few very basic tasks for the day which I can pick from, f.e: Take a walk, sit down with an audio book, cook or bake something, tidy up, play a game. But mainly, it is allowed to just sit and do absolutely nothing as long as it is needed. I might feel getting paralysed by the lack of action after a while, and then pick one of the tasks and guide my mind do one baby step at a time (f.e: look up recipe). Catch my mind wandering off to whatever is brewing in the depths, remember where I am, get back up, continue with task. This sounds like peanuts, but surrendering to this child-guide mode, and accepting to not push for anything more, is actually a great deal. Here’s what looks like laziness to you. The small achievements can make the day feel really satisfying, and help my mind to, slowly, unclutter itself, opening up for input and challenges again.

I have a recurring nightmare. I am on a bus, or train, about to get off, when I realise that all my things are scattered across the bus. Time is getting short, and I frantically try to gather my things, but the more I gather, the more I see, until I need to decide which things are important and which things can be left behind.

This dream is a direct translation of my struggles to sort myself under pressure, as I experience it in situations which don’t leave space to reflect and sort impressions. The more I take in, the less functional my brain becomes.

Care

The common o-tone on taking care of your mental health (do sport, be social, get up at a fixed time every day, take pills to sleep) feels like fighting fire with fire. The advice I got after my diagnosis came from a psychologist who did not know about autistic burnout, and trying to describe my struggles did not help. Other autistic people in Norway make similar experiences. Maybe, after being diagnosed as “Asperger” in 2024, and as “functional” though I’m clearly not, it’s not surprising that good advice is missing (note: Both the diagnosis of “Asperger” and “functionality” should be outdated by now, because they are misleading). International knowledge hasn’t made it yet to healthcare professionals in Norway. So we need to set our own path, and figure out things as we go.

I find myself incredibly grateful for having a powerful tool already at hand. I got into meditation / mindfulness casually a few years ago and made it a more consistent practice this year. What sounds like a hippie trend proves to be helpful in different ways, not only in regards to autistic burnout. It provides some desperately needed guidance for mental hygiene - things which are basically missing in our culture and education. It teaches me to listen to my sensual inputs, allowing me to reconnect with my sensitivity, and so, to better understand my stress factors. It makes each exhale an occasion to dissolve whatever the mind is caught up in, which is a blessing on the trash days described above. Learning to let go of your train of thought, and return to the moment you live in, is a kind of super power, a scientifically proven method of breaking out of circles of worrying and clinging. Meditating teaches finding joy in the most mundane (“boring”) things, and cultivating compassion and gratefulness. All in all, it teaches me a healthier, less cramped, attitude to life - healthier than needing to achieve and feel big and comparing to others. You could call it the art of embracing the joy and hardships in, simply, being alive. Ancient wisdom answering modern problems.

Recovering from autistic burnout

Based on stories from my circles, it seems to be pretty common for autistic teens to drop out of school. Not because of the subjects taught, but because of the insane energy it takes to push yourself out into public every morning, and then pass the day in a social setting which permanently bombards you with input and expectations, while forcing you to suppress your needs and interests. This is the first time autistic burnout appears, though there’s little awareness around that. I did not drop out of school but kept myself running with a stubborn fear of failure, but it was a struggle from day to day, and I had 2 years of downtime after school until I figured out how to continue. It did certainly not help to feel guilty about it, and to constantly push for whatever quick “solution” to avoid a longer gap in the CV, god forbid!

Without the awareness about the burnout situation, I went to an extreme bust-and-burn cycle: New situation, giving everything and a bit more to prove myself worthy, but shortly afterwards, struggling hard to keep it up, failing, blaming myself, finally giving up the situation, back into downtime, new orientation. I currently watch something similar with my partner (who is also autistic).

Keeping up pressure does not help us to perform better. Taking guilt-free downtime does. It makes it possible for the mind to recharge and get curious about new challenges again. Some of the autistic dropouts might pick up school as adults, and, surprise, they do really well.

To me it seems crucial, if we’re supposed to recover and find back our potential, that we get respected with the severe symptoms and struggles we experience, which often are hard to describe. Especially in the phases in which they occurr. We need understanding, and encouragement, to take the downtime which we need (and I’m conviced that this would be incredibly beneficial for everyone, including the most neurotypical person you can imagine). We need to not get pushed into obligations - we will seek our challenges when we feel ready. And then of course, we can’t just continue pushing ourselves the same way as before. We need to set a pace which is slower and leaves a generous buffer for good phases and bad phases, for bad sleep, for processing social friction, for pursuing the special interests which motivate and balance us.

Keeping contact

There’s much more to tell about being autistic, but I’ll round it off here with some thoughts on keeping contact with an autistic person.

There’s a certain o-tone about autistic people having poor social understanding, or expression, or empathy. This is a very neurotypical perspective on things - fact is that we seem to prefer a different style of communication, making us more likely to connect with other autistic people. I feel a great deal of empathy and compassion with others, just sometimes, assuming that others experience the world the way I do leads me on a wrong track. So, life teaches me to not assume, but to ask about stuff.

Many autistic people have a need for being direct and honest. Keeping superficial conversation is very exhausting, but we really enjoy occasions on which we can go in depth on topics we are excited about. Life has taught many of us to not talk our mind (to avoid the “I like trains” fiasko), but to feel out what the receiving party is interested on hearing, or talking about. Signs of disinterest - like lack of questions, or change of subject - can turn us very insecure. We like to give (and receive) confirmations that we’re enjoying the company. Some autistic people feel disconnected from their emotions and don’t like to dig around in the scary mess, but to others, opening up about emotions can be a great relief, and create trust and understanding.

We have days on which certain tasks (like answering a message, making a call, going out) is easy, and days in which our brain goes on strike, and nothing is possible, and no pressure in the world can change that. Some of us like fixed schedules, but to others, because of the ebb and flow in energy / functionality, we might need to follow our own rhythm. When in a social situation, we need to feel that we can ask for accommodations to reduce stress factors - f.e. to meet at a calm space instead of the noisy bar, switch off tv / radio, remove ticking clocks, dogs and kids from the room :] and so on. In general, it is difficult to understand and explain our own struggles, which can turn us pretty frustrated with ourselves at moments.

Thank you for reading :) Hope that I could clear some things up.