I translated my german entry Was ihr nicht seht (II) in english. Some phrases may sound a bit different with respect to the origin since I generally prefer to express my thoughts and feelings in english.
How to explain autism/Asperger’s in a way to be understood? Depending on attention span and given time window of my dialogue partner, I miss often the really important parts of my explanation. It’s always a feeling of high pressure because it’s a a thin line between mistaken for a savant and being underrated in what I’m able to do. Here in Austria, most people never heared of Asperger himself, so if I say autism, people automatically think of autism in terms of Leo Kanner (infantile autism) who defined much more narrow symptomes than Hans Asperger. I also have to stress out that autism is not a fashion label and despite we may share some of these symptomes, not all people including you will automatically be autistic.
What you see …
…may be unsuspicious at a first glance. If the topic is suitable (for me, mostly weather and hiking, sometimes politics if profound enough), I can talk. I like also discussions about autism or general medical subjects. I appear communicative, “normal” and don’t refuse discussions. I’m even able to look in your eyes (very conscious, though, which is stressful over a longer time).
… is empathy, rather overempathic with social attitude. I often advocated for other people without consideration or accomodation, not only ending up well for myself. Despite negative experience, I can’t get fully rid of being unselfish.
…is a successful course of life, with finished studies and immediately starting job. Changing shifts, 100 % for years is probably not what you expect from a person with Asperger autism. Asperger’s often tend to struggle with the regular labour market, enduring at the same work place. I have an appartment and feed myself.
…is a big circle of acquaintances, some friends, mostly met by social networks. You can’t see anymore the long time without friends before the advent of internet.
What you do not see …
… are daily efforts behind that appearent success which are also the result of my autistic personality (like memorizing, special interests and detail perception)
Planning appointments … especially in the afternoon result in a feeling of incapacitation to act, i.e., I don’t know how to fill the residual time in a senseful way. Mostly I do nothing.
Lack of routines … to fill spare time (having too much spare time is also very stressful for me).
Initiation weakness to take care of important phone calls, visiting authorities, shopping, shifting/stopping leisure activities because of the accompanied sensory overload and/or communication challenges
It’s difficult for me to plan today what I’ll eat in three days (e.g. when I have early shift and I’m forced to go shopping the day before) or if I have to do several things at the same time.
Long-time plannings associated with binding acceptance bear the high risk of being too exhausted to actually come, especially in the light of social events. Therefore I act rather carefully with meeting in a restaurant, especially when it will be a rather loud and busy one.
Each day when I have overcome my inner temptation to go hiking, to go to the zoo or in the climbing hall, to take care of an important shop, to survive the phone call with a craftsman (or even worse, to fight back if he tries to cheat which I also have to register in the first place), is a great success for me but necessitates an enormous power of volition at the cost of much energy (or spoons, respectively, regarding the spoon theory)
Sensory overload, human presence and communication
I have very sensible hearing (which is rather typical for both people with autism and 47,XXY, raising among other similarities the question whether 47,XXY is just one possible cause of autism). Shopping has become a quite unpleasent task on my daily to do list. Advertising in the radio is played too loudly as well as music. Infants are crying or shouting and insert hectic rush into the corridors or while paying at the supermarket checkout. People even dare to make phone calls during that process. I hate that! Shopping often means to be touched at the checkout or to be pushed because people are impatient. I also need much concentration for my goods on the conveyor belt, especially when separating pieces are missing to separate my goods from foreign goods.
I tend to break out in a sweat when being face to face with shop assistants or at a marketplace. I tend to miss clues and tips. Unfortunately the surroundings are often hectiv, loud with simultaneous talking so I have to put a lot of energy to hear each word. Then I risk to loose the ability to think and to decide, so I end up buying the wrong thing.
I think a personal assistance would help in these situations, even an assistance dog. And oftentimes just a friend being there.
Walking along the sidewalk, I hear endlessly passing cars. Wailing sirens. Chattering noise of motorbikes. Sawing of mopeds or when motorbike or car drivers speed up quickly and the noise is echoing within the street canyons. Angry honking even late at night. I just wish to have a longer break when no car is passing, so I’m able to breath again … before the terror noise will restart.
Noise of construction places, electric generators, jack-hammer, asphalting machines … such a noise will often compromise seriously my cognitive abilities. I even failed an exam at the university because I have been unable to get a clear thought while the vast majority has been able to blend out the detrimental crash of demolition work happening immediately behind the room where the exam took place. I lost my expensive sun glasses a few months ago while crossing an area in the forest where woodcutter continued their work despite my presence. I nearly lost my orientation during another hike where I had to pass a large stone quarry and big dump trucks produced continuous noise.
There is also a good reason for which I tend not to answer when my smartphone is ringing. I also set up only the vibration alarm which I miss most of the time. I can’t answer the phone on the way while it’s too loud, other calls in the vicinity or traffic noise. Neither do I understand what my dialogue partner says nor what I say myself. The ability to memorize what he/her or I said is also nearly zero. The city doesn’t yield quiet places to make a phone call, at least most of the time. If you still insist on contacting me, write a short message, use messengers in general or write an e-mail. I look at my phone and can write back very fast.
Motion in my field of vision is disturbing, too. Fluttering sheets of paper or textiles, moving branches of a tree, things glittering or flickering. People passing through are highly distracting for my concentration. That’s one of the reasons for which people with autism rather tend to avoid open-plan offices. Inserting a dividing wall could easily help without the need to have single offices. During my studies I didn’t know anything about being Asperger. I always prefered to sit on the brink of the canteen, also today in a restaurant or café. As soon as the room becomes too crowded, I have to go. Going into a restaurant is difficult for me especially during winter time when it’s always very crowded and loud music will also add to it. In summer, Vienna’s tradition of bars and cafés and restaurants is to sit on the sidewalk (so-called Schanigärten). I tried that a few times but it only worked out in quiet alleys. Outside there are lots of people passing by, there is traffic noise and sirens, and there is Austria’s ill-defined non-smoker protection. Meaning, many restaurants allow smoking inside and nearly all allow smoking outside. I may sit at a free table and people come asking me if they could sit next to me. I never experienced a single person asking me if I like him smoking! It makes me so angry that I will drink up my beverage and will go soon. I can’t stand smoke at all but especially not while eating. Unfortunately, as long as the restaurant provides ash-trays, smokers have the right to smoke everywhere. I wouldn’t question their right because of my inability to withstand the smoke.
A combination of noise and visual distraction as well as tactile overstimulation is driving with public transport. It’s loud, it’s tight and I highly dislike situations where I always stand in the way of other people. Some vehicles are built in such a way it’s impossible not to hinder people to get on and off. I dislike people talking to to others on the phone, even it’s crowded. It’s impossible not to listen. Most of the time I use earphones and I listen to music but when I’m too overwrought all I want to have is silence.
Face to face communication
Sitting in pairs in a restaurant or in groups, my ability to listen is sometimes completely gone or I just see how my dialogue partner is moving his lips but I only understand pieces or even nothing or my brain captures the words with delay. My brain is often crowded with thoughts but I need too much time to express an answer. I also tend to speak in short or half sentences, given enough time to answer. The majority of dialogue partner speaks fluently, though, and it’s difficult to find a moment where I could step in with my thoughts. It’s also difficult for me to listen and to phrase answers at the same time. It eventually leads to successively falling silent during group discussions. I may not say a word during a group discusion but questions may arise afterwards.
I’ll never understand why I should complain about people doing so obviously wrong things they should know it themselves. I’m getting so angry about these simply facts I feel unable to say something in a patient and polite way. So I’ll end up saying nothing and feeling strong anger rising each time when it’s happening. That’s certainly not the most comforting solution here. Such situations happen quite often and the experience with the feeling of being unable to react is quite detrimental for quality of life. In such moments I feel ‘disabled’ by my autistic communication disorder. Of course, there are other reasons not to (re)act, like anxiety or indifference. I rather lack to find the appropriate words face to face. It’s the matter of being passive and to avoid confrontation instead of standing up for your rights. I know…a lot of nonautistic people will act (or not act) like myself. For me, it just adds another barrier to communicate in my everydaylife. You may feel with me here but it’s rather unlikely you will experience all the other difficulties I describe here.
So far I described a lot of things steered by external influence. All the internal processes happening in my brain are invisible to you. If I have to play situations or events again and again in my thoughts, preparation and postprocessing of (important) meetings. I have constantly think about what I have to say, how I will say it, how I react and what I should not forget. Then I’ll forget it because things ran different, my plan didn’t work out. I said it the wrong way leaving a wrong impression. I became too emotional and impulsive instead of being rational which is easier in a written way or during preparation. A miscarried meeting or talk may lead to days or even weeks of ruminating [endless ruminating is one of the frequent symptomes of autism and 47,XXY]. Then I tend to slip into another depression since I often become despaired explaining (my) autism to my environment. I’m different and although I’m able to compensate a lot of my weaknesses, you can’t turn me around to pass as a non-autistic.
Autistic life is an enduring challenge
Now you may think a bit different regarding my achievements and you may wonder how thinks could work out relatively good for years. I could actually benefit from my (late) diagnosis. It didn’t change my environment – maybe one or two treating me somewhat different but most of time I have to live in and deal with a world completey unprepared for autistic people. I had to develop relaxing routines, I need distance to people. I need a day like this one writing this instead of using the pretty summer weather outside. I have to take care of myself, replenishing the energy storage (alias available number of spoons) to manage that show of strengths. My strengths couldn’t exist without my weaknesses, or, quoting Hans Asperger himself in his first talk about autism in 1938: “… these difficulties are the price the autistic person has to pay for his abilities.” Strengths and weaknesses have their origin from the same source. (Source: Steve Silberman, Neuotribes, 2015) Asperger was ahead of his time for decades. You may recognize this statement in the modern neurodiversity movement phrasing that autistic strenghts and talents are not side-product of a bad wiring of the brain but product of wiring. (Temple Grandin and Richard Panek – The Autistic Brain. Exploring the strength of a different kind of mind, 2013).