If you have met one person with Aspergers Syndrome – then you have met one person with Aspergers Syndrome! It seems redundant to write this, but people with Aspergers Syndrome are just as different, as so-called normal people – including what defines their levels of strengths and challenges.
Aspergers Syndrome is a developmental disorder on the autistic spectrum and as such not an actual illness. It is rather a form of living conditions, a unique way of thinking and behaving. The awareness on spotting children has increased the past years, but still many are diagnosed later in life, because the tools and theories to do so have improved and attention is being paid to coping mechanisms and masking; behavioral tools that many autistics have managed – and struggled – through life with. From a basic point of view someone autistic is characterized from a triad:
– Social interaction
– Social imagination
Aspergers Syndrome is also described as a “high functioning autism” or “autism light” – definitions that to a point can be misleading, because they overlook or simply don’t address the difficulties, that someone with Aspergers live with. You see, Aspergers Syndrome is not just a certain way of life and thinking – it is also a handicap, a disability.
There are plenty of sites online that deal in depths with Aspergers Syndrome and if you suspect, you might be autistic or someone close to you could be, I will recommend searching for information online. In this post, on this page, I will instead deal with how my Aspergers Syndrome presents, with the strengths and challenges that apply to me, and I will use the triad to try to structure the information. There will be things that you might recognize – and there will probably be things, that doesn’t quite ring a bell. It’s like that for the majority of newly diagnosed autistics, when they start searching for information and like-minded people. The reason for this is very simple: we are all individuals, with each our backpack of experiences, medical history, challenges and strengths.
I have always been a very quiet girl, not very talkative. Maybe that is one of the reasons why I was diagnosed as late as I was. The areas in which my communication lacks or struggles, are areas like body language and mimics/facial expressions, being able to be in a group conversation with more than two people, keeping a conversation going, small talk – on the other hand I can be overly detailed when I’m talking about an area of interest, because I don’t sort out non-relevant information (because to me, it is ALL relevant). Furthermore I have trouble catching irony and sarcasm, which makes me appear quite naive, since I don’t catch that crooked smile or the playful glimpse in someones eyes – and therefore take what is being said for fact. When I get to know someone though, I get better at this over time, because every person has a tendency to do irony and sarcasm in a distinct and specific way. But to catch that and work around that, I need the experience to analyse my way through it.
I use a shitload of energy on conversations! More than two present, and you will find me withdrawn and observing instead – there are simply too many impressions to decipher and deal with, while also having a conversation simultaneously. When I’m in a conversation, a lot of analysis and thought process kicks in, especially if I don’t know the person very well, and primarily it is about determining and identifying what is actually being said. Another way of putting it is saying that I’m on constant alert of signs of e.g. irony, because I don’t detect them “naturally” like most people do. Equally I find it hard to determine whether the thing I am talking about has any interest to the person I am talking to – all in all, this could be the main reason to why I am such a quiet girl: it’s simply easier not to say anything at all! Then I know I wont offend anyone, say something, I will regret, bore people unintentionally etc. The great disadvantage, that I think a lot of people with Aspergers Syndrome could recognize is that with this silence and withdrawn demeanor I sometimes appear snobbish or arrogant – especially with people who don’t know me.
Maybe it kind explains itself, in lieu of what I wrote under “Communication”, but I find it extremely hard to establish and keep friendships – or contact for that matter. I find it extremely hard to phone people, just to hear how things are going, because once I ask that, I really don’t know how to proceed. And phone conversations very often get awkward to pull off for me. Maybe you know about those calls, where the one calling opens with “What’s up?” (and this is a poor translation, because in English this is actually something you can answer – the Danish sibling to this doesn’t hold a logical defined question – translated directly it is “What so”) – my answer is typically the same: “What’s up” – what am I supposed to say? It’s too undefined for me to relate to.
Or it’s difficult being asked how things are going or if everything is okay, because I never really know, if it is meant as a serious, honest question – or if it is just to be polite. And I have yet to cover the entire labyrinth to go through to finish a goddamn call. People, who know me well, are luckily good at being the “finisher” – I think over time, people come to realize and know, that unless they want looong periods of silence on the phone, they better be the ones doing the goodbyes and see ya laters. Sometimes in work situations it’s a little easier, because the questions are specific, clearly defined and there are no expectations of small talk – time is ticking!
Public authorities are an entirely different matter – that scares the shit out of me. No face to tie to the voice, someone I don’t know, and maybe I have to explain my situation and in that case: where the fuck do I start?! So usually that affects me deeply in a negative way, and afterwards I am completely exhausted.
I’m also really bad at figuring out whether someone has an interest in me, friendly OR romantic. And if there is someone, I think could be interesting to get to know better, I don’t know what to do. I mean, I may have challenges social-wise, but I do know that at 40 years old you don’t write a note saying:
“Wanna be friends, YES – NO – MAYBE”.
Although it would be nicer and simpler that way!
Also I often end up with another challenge: I need quite a lot of alone-time to recharge my energy levels. So even if a friendship is building up, I have a tendency to withdraw, because there are so many insecurities on proceedings and it draws on my energies. It may be one of the areas where I feel the most envious of other people; the ease they seem to interact and behave with each other.
Often Aspies are described as anti-social and lacking empathy, but this is really not the case with me. I like to have a cup of coffee with someone I know. I can be excited of an upcoming great event. And I can be deeply affected by the joy or sadness of other people – maybe even too much. I just fall short, when it comes to expressing it. And as far as events goes, the excitement and joy is sometimes overshadowed by the fact that I know how much energy it will demand of me. Christmas can affect me deeply far into January, just to mention one example (which is why, Christmas really isn’t a big fave of mine).
Finally, a little more specific, I have a hard time keeping eye contact, especially with people I’m not quite comfortable or familiar with. I do however have a few tricks up my sleeve:
- looking right between the eyes or
- on the forehead or
- as used when I held lectures for new students at the university – very casually let my gaze slide over the audience without focusing – but still making everybody feel like they were being addressed.
The central issue here is my lack of dealing with changes. If I have a schedule in my head (which I pretty much always have) on how something is supposed to take place, I can’t just switch it up.
It can be a bus being late.
It can be someone unexpected picking up the phone.
It can be changing the plans for what we should have for dinner (which is usually scheduled 1-2 weeks ahead).
Deadlines that are slipping.
A task at work being interrupted – for instance by a customer.
I guess you could say that then I shouldn’t be told, what is going to happen, which would be a logical suggestion, but it doesn’t hold! Not in my case, that is. You see, the more uncertainties, the more anxious, nervous or flat out scared I become. I’ve just had a period where doing the dinner plan ahead wasn’t something I had the energy to do. But making the decision every single day on what to eat, where and when to buy etc. just killed all energy within. When I finally got it back up and running, my energy levels grew – for instance enough to write this post. So the more I know, the less I have to think about and prepare possible alternative scenarios for – because as said; where most people can interact and behave on instinct or autopilot, I need to analyze and think things through prior to whatever action I then deem fit for the occasion.
Considering this, I guess you could say that I am kind of rigid. I am not very flexible. I can pretend to be because I have a rational understanding of the fact that unforeseen things occur, but make no mistake – it affects me deeply. The method I use is often like saying “Yeah, sure” or “It’s OK” or if something really takes me by surprise I can prolong my accepted reaction time frame by adding “Oh my” or “Really”. If it is a conversation or an appointment, you can be sure, that I have already prepared myself for the possibility of a change and how – if so – to deal with that situation.
A good example is my former workplace, if I opened the store in the morning, I always prepared the multiple possible solutions, in case a colleague called in sick. This started the second I rose from bed, sometimes even the night before. Who could I call in to work instead? How would the tasks of the day be most efficiently delegated and executed (which depended greatly on who I could call in) – and if someone else called in sick – what would that do to my options. In all the years I have dealt with handling people calling in sick, I have always clocked in long before official work hours, simply to be ahead, in case of someone being sick, so I would have the time to actually call in a replacement. I haven’t always done that, but in time it became a way for me to avoid melt downs and huge stressors, when shit hit the fan. The trouble is that this puts a tremendous amount of extra workload on my shoulders – which then several times has led to stress break downs. In other words; the more appointments I have, the more alert I become.
Furthermore I have difficulties prioritizing tasks and multitasking. Maybe due to thinking everything is important – I mean, if they weren’t important, the tasks wouldn’t be there! It’s also due to the way I approach a task; I often get consumed by the details – and consequently lose important time for the remaining tasks. That has caused a great deal of frustration and several long term sick leaves, because primarily I’m trained and educated within fields where time is a crucial factor. I have often been told that a task 80 % achieved is okay – but it isn’t in my head. On the contrary, what is my version of 100%, is usually what others consider to be 120%. I have worked with this particular challenge a lot, so to some level I can compensate – but the more I compensate, the bigger the grave I’m digging for myself – simply because I feel my results are lacking and usually that means – if done too often – that my head creates this reality or story about myself, that I’m inadequate, useless or even lazy – because I know the job could’ve been done better. This is a sure route to stress.
Apart from that I have a very visual mindset and learn the easiest by seeing and touching. Sometimes I’ve read that Aspies lack imagination, but I don’t recognize that myself. I have a pretty good (awesome) imagination, with these little alternative worlds inside my head. If I’m engrossed in my plants in the window sills, I can have long conversations with a fictional professional gardener, who’s company I can enjoy more than non-fiction company – maybe because I’m more in control of the conversation. When I was a little girl and went to the town centre, there was this small path of sand – here I would be exploring the depths of Africa, which would then lead to me being extremely aware of plantlife and birds crossing my path. It could become anything from parrots and dragons to flesh eating plants! This also means that I am more often than not extremely good at thinking outside the box with problems, where the usual methods don’t apply.
Stimming and special interests
As far as stimming goes – repetitive movements – I control this more than others. It’s there, but I try to avoid it, being with other people, because it usually means that they look at me oddly or even comment on it. If I’m really upset, and need soothing, I can rock back and forth. I get “uneasy” hands, if under pressure. Og I find it hard dealing with waiting, like waiting for a bus, so I walk back and forth constantly or shift the weight from one leg to the other. I can move my leg up and down while sitting. I’m one of those people, that clicks a pen constantly if I’m worried about something. But usually that annoys people. Then what do I do?
I can immerse myself in solving a puzzle or Ipad games to keep my brain activated.
I walk, instead of waiting for the bus.
I wiggle the toes instead of moving the entire leg.
I hum either out loud or to myself, because keys and scales calms me down. And then I have my tangles to play with, if my hands really can’t keep steady.
But I do have a rather large amount of selfcontrol in this area, or so I’ve been told by a former therapist. This was years before my diagnosis and not related to Aspergers. Back then I could control myself to a degree, where I could sob without a sound – which by the way scared the shit out of my then-girlgriend, as she found out.
Special interests… typically you will read that Aspies have one all-consuming special interest, that we know absolutely everything about. But this is not necessarily the case. In my case, those interests shifts. The usual suspects however is music, writing and animals. I spent most of my teenage year writing down music charts from the radio and kept score from week to week (checking if the DJ’s made mistakes!!!) I love to explore music and in many ways music affects me better than movies or books.
Animals make me feel safe, they are easy to relate to and there are no hidden agendas.
Writing usually seems to be this sort of valve, where I can let off steam and somehow make my mind a little less “crowded”.
But several interests have come and gone over the years – and sometimes they return; crafting (knitting, sowing), drawing, painting, running, politics, plants, books, games (such as SimCity or SimTower), astronomy, biology, neurology, geography and HEAPS more!
What might be the difference, the Aspie trade, is how I become engrossed in my interests; anything else loses it’s significance. The phone could ring, I don’t hear it. If I’m lost in a good sci-fi or other nerdities, I can miss out on people actually talking to me (this is also the case when I’m just lost in my own thoughts). I don’t know everything about my interests – not even the usual suspects. But they take so much of my time that I set aside things that “normal” people would prioritize instead – like eating! I can even be extremely irritable, if I need to interrupt whatever it is that I’m doing. This is again related to my lack of flexibility.
And finally there’s the sensory issues. Some find specific fabric textures, sounds, food textures etc. difficult. To me, it’s primarily noises, I react and respond to. My highschool exams were extra-ordinarily taken in an isolated room, simply because I don’t have that filter that shuts out irrelevant noises and sounds (and mind you this was years before getting my diagnosis). It’s not that my hearing is better than anyone elses – I just don’t isolate sources of sounds the way most people do.
Crackling and rattling noises get on my nerves, like at the grocery store and someone has to fucking fondle a bag of sweets or chips for 10 seconds, before they put it back on the shelf or into the cart.
I. Hate. Opening that kind of bags.
In the olden days with cassette players, the sound of putting the cassette in would give me ticks – you probably know the feeling you get when you hear the sound of nails on a blackboard or a fork on plate makes (pretty much universal) – THAT is how I react to the above mentioned and many more. Not to mention the ordinary sound of traffic. I hate rain, because rain and wet pavement amplifies that traffic noise ad nauseam. I love snow, because it makes all those same sounds soft and lowered. Downside is when snow turns to slush, and the noises go up again!
Another great sensory difficulty is the mood of other people. I’m not particularly good at pinpointing what kind of mood they’re in, but I quickly detect whether it’s good or bad – and that affects me deeply. Especially if it’s negative, because I then start wondering if it was something I did or said, that caused this in the first place – even if I rationally know it’s not the case.
Minor sensory issues are sticky things, like moisturizer, glue or just plain sweat on a summer day. I can’t stand the sensation of moisturizer on my skin, but my skin is very dry by nature, so I have to deal with it occasionally. A dermatologist would probably complain that I deal with it no way near enough!
Light can also be a factor that affects my levels of stress – I love sunshine and I’m positively affected by the weather like anybody else. But especially in the winter season where the sun is low, light is something I have to factor in when planning and going about my day.
Strengths – because they are there!
Often you talk about specific Aspie trades; special abilities that is said to be part of being Asperger. For a long time after my diagnosis, I couldn’t see them. On the contrary; I saw all the things I couldn’t do!
But of course there are strengths for a lot – but not all – Aspies. Some are fortunate enough to work within their field of interest. Others use their trades in the job or education in other ways. But it is also important to clarify and emphasize that not all Aspies are alike – while some have multiple strengths, others are so affected by the downsides of autism and the challenges that talking about ordinary joblife is redundant.
I myself belong to the group, that will not accept to be on social welfare for the rest of my life. This is why it has been extremely important to me to locate and identify my strengths – because in the end, those are what I’m supposed to “sell” at job interviews – but they are also the keys to building up self-confidence and self-worth.
THE SAFE CARD
I am extremely loyal to loved ones and employers. No one is to say anything less than acceptable about someone I care about. I will stretch far for these people in my life. I am dutiful at Olympic levels, on time (sometimes before) and I solve the tasks I’m given. I have a great sense of responsibility to my tasks and trusted areas, but also for the big picture, like a store chains collected profits and reputation. The downside, possibly already implied, is that I find it very hard to say no or to stop. When it comes to work and career I have always NOT prioritized my personal energy and well being. It’s common that I accept tasks even if I actually know it will come back to bite me. Maybe it’s a lack of ability to sense my own feelings properly – but after the diagnosis, this has become something I’m now a lot better at, than I used to be.
THE SPECIAL MINDSET
As mentioned I have an ability to think outside the box and see new possibilities in problems, where ordinary measures don’t work. I’m very analytical, probably due to decades of trying to deduce, analyze and decipher humans in general. My mind works a lot in grey areas, meaning that I have a tendency to see an issue from multiple angles (you know the saying “There’s two sides to every story”?? Usually there are plenty of sides to every story!). This means that I typically fall short in verbal discussions, because there are too many things to consider all at once. This also means, that asked for a specific take on a problem, I rarely give a clear answer (because usually it’s just not that simple!). My world is not either/or but rather both/and.
I’m hungry for knowledge: giving a wrong answer to a Trivial Pursuit question will have my nose into Google for the rest of the evening. Sometimes that actually kickstarts a new interest!
If I read an English book and see a word, I don’t know what means, I have to look it up. My mind doesn’t rest unless I do just that. Unfortunately this does not mean that I remember everything, because I don’t – my short term memory sucks. But in the moment it soothes me just like stimming does. Repetition usually works on remembering, but if I haven’t got a practical use for the data, I don’t store it. Simple as that.
Then there’s my planning skills, that are pretty awesome, despite the fact that I can lose the overview of complex situations. I am – pardon me not being particularly humble – pretty darn amazing at making schedules, lists and structuralize a given progress. I loved as a manager to make work schedules, maybe because it touched the skills of making puzzles. It also feeds on another ability of mine; the ability to focus on details. It’s the same thing, when engaged in going through a budget, where I dive into each post and calculate backwards to check the numbers from every angle. I love it – especially when I catch something, that others have missed!
So, the strengths are there. The challenge for an Aspie like me is to figure out exactly how I can put them into play the best possible way, still addressing the challenges I also have. My main challenge is to figure out how to create my version of a good life, with the entire combination of trades, I’m made of. This quest – finding my version of the good life – is essentially what this blog is all about in the first place: finding it and hopefully making others like me discover their version.
This is – in short – the essence of my Aspergers and how ASD affects me.
I will dig a lot deeper in future posts, but maybe at this point there are things you recognize.
“Ordinary” people will also recognize some of these things but – on behalf of all Aspies – it’s important to point out that there is a difference in the experienced level.
As someone with stress and depression I often meet people who complain about being stressed or depressed, when they are actually “only” a bit under pressure or just plain sad. If I ask them more specifically, it often becomes clear that they have no idea of what stress or depression actually is like.
It’s the same with Aspergers; some recognize being annoyed of being interrupted. The difference is just that; they experience being annoyed for a few minutes or maybe hours – for someone autistic it can ruin the entire day and the day after. Like I wrote previously; Christmas Eve can affect me far into January. Anything that breaks my daily routine is a challenge, that draws on my energy. Not just for that hour or that day, but often for days or even weeks to come.
As said, I will elaborate in future posts. You can use the category search or the plain search field to find more posts on Aspergers – or mental health for that matter.