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In my teens I noticed that I could relate to children a lot better than to adults, not to mention peers, and decided to become a childcare worker. However, my father had more ambitious plans for me.
At the age of 21 I started studying labour administration in Mannheim where my father had secured a place in the department he worked for, even though I wasn’t particularly interested.
On the good side it gave me the opportunity to move away from home and live independently, and I intended to make the most of it.
One day I decided to treat myself to a meal in the Kaufhof restaurant. It was jam-packed, and the only spare seat was at a table with two women and a child. I asked whether the seat beside the boy was taken and sat down. While I had my lunch, the little boy, who was about three or four years old, showed me his new car. He drove it over to my plate and back a couple of times until it had an accident and turned over. In order to save the passengers, I turned my matchbox into an ambulance that quickly came to the rescue.
During our conversation he had moved closer to me and eventually sat on my lap. I saw his mother staring at me which made me feel quite uncomfortable, but I would have felt a lot more uncomfortable rejecting an affectionate child, so I continued playing with him. After all, it was not like I had put him there.
A few minutes later his aunt brought him to the toilet, and his mother said to me, ‘I’m so sorry for staring at you. My son is autistic, and apart from immediate family he doesn’t even look at people let alone talk to them.’
This was the first time I met a child who had been diagnosed with autism, and since then I realised that I relate particularly well to autistic children (and vice versa).
The vast majority of lecturers and students at college as well as of the staff in the offices where I completed my internships had a very low opinion of their main clientele and generally considered unemployed people to be lazy bastards who were out to cheat them and needed to be kept in line. Being one of the few who respected them as equal human beings, I soon earned a reputation for being too lenient.
The only part I mildly enjoyed was my internship in the appeals department. I went through many appeals files that were marked for denial, and in quite a few cases I found that the deciding officer had overlooked (or possibly ignored) important information which led to some of these appeals succeeding after all.
The mounting pressure of the exams and the necessity to study topics I had absolutely no interest in sent me into autistic burnout during my last year in Mannheim which was treated as depression.
At the age of 26 I stopped trying to fit in and started living by my own design. After a year of working as a bellboy in a hotel in Munich, I decided to move to Sligo (which I had discovered while interrailing in the Eighties) but somehow got stuck in Galway.
When I had to leave the following year due to remaining unemployed, I decided to do what I had initially wanted: get my childcare qualification in Germany and move back to Ireland. At that time I was blissfully unaware that this is the worst possible combination of gender, profession and location in Western Europe.
I got my childcare diploma and moved to Sligo in 1996.
My childcare worker applications remained unsuccessful. In one case I had applied for a one-year position on a community employment scheme, but the interviewer told me that they don't employ males in the crèche and that I could run the afterschool club instead. My mind only saw two possibilities: suing the employer for discrimination and going as far as the Supreme Court or taking the insult and accepting the alternative offer. Since there were no witnesses, and since the employer probably would have denied making the statement, I realised that my chances of success were close to zero and took the afterschool club.
After that year I unsuccessfully kept applying for positions as a childcare worker, but after five years I moved back to Germany for just over a year, hoping that there it would be easier for a male to find employment in the sector.
I ended up in what was called an analogue household with two teenage boys and a housemother whom I found difficult to bear since she was very talkative and gesticulated a lot. I eventually lost that position because I hadn’t done things she had expected of me, obviously without explicitly stating them.
Following this experience I decided to see a psychiatrist who misdiagnosed me with bipolar disorder.
I soon returned to Sligo where I was put on a number of courses and community employment schemes and worked in menial positions for some rogue employers, including Lidl. I contacted the Labour Department (who ignored me) about their illegal practices and put up a webpage about them under a pseudonym. Eventually I decided to put my mental health first and quit. At that time a Guardian reporter who wasn't able to find any Lidl employees willing to talk contacted me; I gladly agreed to an interview, and her article caused a bit of a stir - but not enough to change things.
I also put up a page on my website with my own experiences and that of others who had submitted them to me by email. A few of these employees later asked me to remove their contributions because they had received anonymous threats; I never received any myself, though - apparently they are well aware that attempts to intimidate me would backfire.
I bought my first computer around the turn of the millennium and registered with a free web hosting service to publish my poems on a webpage. After that service was cancelled without notice, I purchased my own domain in 2005. Other than publications in books and magazines, webpages have the advantage (besides reaching a wider audience) of editability, giving me the opportunity to include additional aspects or recent developments in my articles or to rephrase lines of my poems. (This is also one of the reasons why I prefer writing articles to recording videos.)
Around that time I also got my first digital camera. I had always enjoyed photography, and now I had the opportunity to share my pictures on the Internet. Within a short time I provided the largest online collection of Sligo landscape photographs.
I got my driving licence during my stint in Germany and drove a car for five years, but I always felt uncomfortable behind the wheel because I kept thinking about all the things that could go wrong.
Thanks to my autistic perseverance I eventually became the first male childcare worker in County Sligo in 2007. My possibly best reference came from the son of the crèche owner who told me, ‘My mum says you’re the best we’ve ever had.’ The secret probably lies in my attitude towards children: I don't see myself as a grown-up amongst little ones but as a peer with responsibilities.
One girl in the crèche, let’s call her Martha, was autistic. She didn’t avoid the other children as such, but she didn’t initiate any contacts and seemed entirely oblivious to the subtle approaches from other children whom she didn’t even talk to (she talked to staff, though).
Therefore I decided to encourage others to approach her.
Martha would arrive in the crèche every afternoon after her therapy (in retrospect I fear it might have been ABA) and was allowed to rest for 15 minutes on a beanbag after which staff would wake her up.
One boy, let’s call him Carl, apparently had a crush on her. He was a little rough at times, though not intentionally. I asked him if he would like to wake her up, but reminded him to be gentle. And gentle he was; so gentle, in fact, that she didn’t wake up at all.
During the day I kept encouraging him and other children to approach Martha which they did, and to which she responded very positively. She started socialising with and talking to other children, and just a few days later on the way to the kitchen she dragged Carl away from the group; of course I had to get them back, but I did it in a very friendly tone in order not to discourage her from taking the initiative.
That week I was called into the crèche owner’s office because her therapist wanted to know what had caused her immense progress in just a few days.
(Naturally I believed her mother was aware of my role in her development, but a few years later I heard her referring to me as ‘only the guy who changed the nappies.’)
I worked in two crèches on minimum wage, but I had to leave the second one (which was 25 km away) because I couldn't afford my car any longer. (Besides this, the manager had forced me to take an authoritarian approach against the children which went against every fibre of my being.) Afterwards I opened my own service but had to close again because I had only one child enrolled. (Still, it was the most enjoyable year of my working life.)
A few years later I got a position as a childcare worker on a one-year community employment scheme.
Over the years I both recognised autistic traits in myself and subconsciously developed a lot of coping mechanisms, but I never considered myself autistic until the age of 49. A new colleague had started working in the crèche and kept asking me about my origins and my family. I answered truthfully and to the point, but I felt increasingly under pressure. She was not my superior, and this was not a job interview – why was she asking me all these things?
Once I became aware of these thoughts, I almost burst out laughing. I realised that she was simply being sociable and having a friendly conversation with me, and I remembered to show an interest and ask a few questions about her as well. But I also realised that I have more than just a few autistic traits, and suddenly all the things I never understood about myself and others made perfect sense. Besides this, it explained why most people around me seem to be acting so strangely and illogically. (At that moment I immediately thought of dozens of other possible candidates, including my father and most of his siblings.)
Taking into account that I had lived for 49 years before coming to this conclusion, most of them independently and either in education or employment, it appears that I am on the so-called high-functioning end of the spectrum, but that wasn’t always the case. The way to becoming an accepted if somewhat awkward member of society by developing more and more masking skills and coping mechanisms was a long, embarrassing and exhausting one.
My speech development was normal, and therefore nobody suggested that I may be autistic, even though there were indications. I was simply a ‘difficult child’.
Even as a baby I found it difficult to fall asleep, and my parents had to keep rocking my cradle for hours before I finally dozed off. When my mother attempted to wean me at the age of five months, I violently refused the milk bottle, and eventually she succeeded in feeding me with a sippy cup.
Change wasn't easy to deal with. When my dummy went missing one night, I started screaming and wouldn't stop. And even though my father bought a new one from the emergency service at the pharmacy, being offered a replacement made me even angrier.
Once we stayed overnight at my parents' friends' place. I screamed all night long because I couldn't sleep in my own crib.
Until recently I thought I didn’t have any meltdowns as a child since my parents don’t recall any. However, while I don’t remember the occasion itself, I now remember how my maternal grandmother’s husband (both of whom were experts at incensing people just for their entertainment) once boasted that, when as a toddler I lay screaming on the floor and drummed my fists on it, he lay beside me and copied me, which he considered terribly ingenious and funny.
I always had a strong urge to be independent and figure things out for myself. Unrequired offers of assistance were met with an angry 'I can do it myself!' ('Kann alleine!')
From a young age I was fascinated by letters and words and kept nagging my parents about how certain words were spelt. Initially they didn’t support my efforts because they were afraid I would get bored and fall behind once I’d enter school, but there was no stopping me, and as a toddler I left my mother dumbfounded when during a walk I pointed at the sign of a petrol station and asked her, ‘Mum, does that say Esso?’ (Of course this is not the best choice for the first independently deciphered word, but I didn’t know that at the time.) I had taught myself to read around the age of three and spent most of my childhood buried in books and writing stories. At the age of six I read novels intended for children twice my age, such as The Adventures of Tom Sawyer. My parents assumed that I didn’t understand everything, but I did.
Reading opened an entirely new world to me and taught me about history, different cultures and a lot more, and it laid the foundation for my own literary work. It also helped me identify areas of interest and research them intensely. The advent of the Internet added a completely new dimension to the possibilities, and I spend a lot of time researching topics for my articles and poems.
At the age of three I was enrolled in a crèche but had to be taken out again after a couple of days. My parents were told that one childcare worker had to be set aside just for me.
Around that time I also got epileptic seizures. The doctor told my parents that every seizure kills off so many brain cells, implying that I would end up a vegetable. He also said that epileptic children are exceptionally challenging and that my parents should be particularly strict with me. As we know today, this is the worst type of advice for dealing with an autistic child and turned into a self-fulfilling prophecy. The more I was put under pressure, the more I shut down, and the more I shut down, the more pressure was put on me. My parents felt helpless, and I felt persecuted. You could say we got off on the wrong foot.
While I didn't seek a separate diagnosis for it, I know I developed PDA (the technical term is Pathological Demand Avoidance, but the community prefers Persistent Drive for Autonomy) as a direct consequence of this approach. Until today my initial reaction to every demand (or even polite request) is that of refusal. However, as I got older I started following this initial reaction up with a thorough reflection on the reasonability of the request.
I often ponder on the question of what would have happened had I been diagnosed with autism as a child, and there is only one possible answer: I would have been labelled 'low-functioning', told that I could never live independently and probably would have believed it, and today I would still be living with my parents, most likely without even finishing my education. On top of this, the only 'treatment' in those days would have been Applied Behaviour Analysis (ABA), a conversion therapy very similar to dog training which aims to suppress autistic behaviours without any regard for the causes of these behaviours. I imagine that, had the demands of a therapist met my PDA, there would have been war, and my situation would have become considerably worse.
I don’t remember many events from my childhood myself, but I do remember my emotions, the most powerful having been that I had no say in my life and that my feelings and wishes didn’t matter. Everything I enjoyed seemed to be forbidden, and I kept thinking of new activities that hadn’t been banned yet.
Since I wasn't able to filter out background noises, I got rather upset when my family were talking while I listened to my records or to the radio. In order to understand, I used to walk up to the radio and press my ear against the speaker which was considered bratty.
One of my favourite records was a collection of murder ballads; I was magically drawn to them, even though they seemed surreal to me because none of the events appeared to be related. One example is the song of a girl who finds out she is pregnant and puts her head on the railroad tracks. A student who disembarks from the train sees her body and says, 'That wasn't my intention.' When my parents explained the social rules that connect the events to me, I concluded that social rules are bonkers.
Since I was a child I despaired at the herd mentality of most people around me. I was born less than two decades after the fall of the Third Reich; lawmakers who had legislated under Hitler still dominated the political landscape, teachers who had indoctrinated their pupils into the Nazi ideology still taught school children, those who had denounced others for their political views or sexual orientations still spied on their neighbours, and hardly anybody had a problem with that. People did as they were told and what they were expected to do without any sense of responsibility (the classic 'I just followed orders' attitude).
Initially I believed, like many others, that this herd mentality was a distinct German trait, but the more I learned about the world, especially with the coverage of the Vietnam War, the more I realised that it was a distinct human trait. I later heard about the Milgram Experiment which confirms that it is shared by two thirds of all humans.
Like the people around me I always felt sorry for other white people who fell victim to catastrophes or atrocities. However, I felt the same empathy for Vietnamese, Palestinians, Afghans and everybody else in the world while their fate met with indifference by society at large. Now I noticed that this is an autistic trait I call 'empathy beyond affiliation'.
As a child I was expected to finish my plate, even when I was full, and my parents reminded me that children in Africa are starving. I felt genuinely sorry for these children and suggested that they could have some of my food for which I was reprimanded as being flippant.
My seizures ceased when I was five, but absence seizures continued in situations of sensory overload or unbearable pressure or anxiety. After each one the neurologist prescribed an insane amount of medication (which I didn't take), and eventually I kept them secret whenever possible. The more control I got over my life, the less frequent they became, and in my late teens they had disappeared altogether.
In order to get by, I had to suppress my who-put-you-in-charge attitude towards my parents and teachers (I accept authority based on competence but not based on position), but this wasn’t possible in all cases. I was perceived as being defiant, and I had a habit of not accepting anything without being given a good reason. My permanent why questions were considered obnoxious and usually answered with 'Because I say so' or 'Because it was always done this way'. These replies were condescending, and I registered them as such. To be frank, I'm still like this, but I have learned to control myself where necessary, such as at the workplace. Even though I often strongly disagree with my employers, I usually succeed in keeping my opinions to myself; but this feels like switching off my identity entirely which is a very exhausting and trying coping mechanism.
I can’t recall much of how I played as a child. What I do remember is that I preferred the (relative) safety of my room or the basement to family life, and that I could spend hours on end playing with sand and water, watching a cross spider or examining the social life of an anthill. I also used to pick up ants and put them down again, afterwards enjoying the invigorating smell they left on my fingertips.
I often sat in front of the washing machine. Looking at the gentle movements, the changing colours and the rising and falling water level with the many bubbles had a soothing effect on me.
I also took great pleasure from my kaleidoscope, watching the beautiful patterns and knowing that each move creates a new design, at the same time bemoaning the fact that it also made the previous design irretrievable.
I had a habit of repeatedly touching the hotplate on the electric cooker when my mother was using it. My parents kept telling me that the plate was hot when the cooker was on, but it wasn’t as simple as that. Immediately after being switched on, the plate was still cold, and immediately after being switched off, the plate was still hot. I had to get to the bottom of this.
Back then I wasn’t able to articulate the complex thinking behind my experiment, and so I was simply considered to be naughty.
One morning at the breakfast table I, seemingly out of the blue, emptied my glass of milk into the sugar bowl in one quick movement without spilling any. I had seen small amounts of sugar being dissolved in liquids such as my tea before, but I wanted to find out how equal amounts of liquids and sugar would interact.
Haircuts were an utter nightmare. I consider my hair part of my body, and therefore getting it cut felt like an amputation. In my adult years I solved the problem by letting it grow long.
Falling asleep usually took hours, but I never spoke with anyone about it; I was sure I’d be told I had myself to blame.
I had few friends; in all cases the friendship was initiated by them, and I had a feeling I wasn’t their first choice. I think initially I was quite outgoing, but after years of rejection I started refraining from approaching others due to a combination of fear of imposing on them and fear of rejection, and this hasn’t changed to this day. The only exceptions were a few girls I hit on when I was younger (but those attempts were epic failures) and celebrities because being turned down by them can be considered the norm and therefore isn’t too embarrassing.
Growing up under British occupation and in a garrison town (my parents had moved to Lüneburg when I was 11) made me feel quite uncomfortable. Even though there never was an incident, facing both British and German soldiers who would mindlessly obey any orders on a daily basis gave me the creeps.
Some of my motor skills such as swimming or riding a bike were considerably delayed, which I think is due to the fact that autistic children tend to learn by figuring things out for themselves rather than copying adults. PE was the worst part of the nightmare called school, and I feel that this delay contributed significantly to my undisputed position as the favourite bullying victim of classmates and teachers. (Ironically, my PE teacher was the only decent one besides my English teacher, even though I must have driven her to despair.) Another problem besides the bullying was the competitive environment which I still avoid as much as I can.
After we had learned the basics of exponentiation, our maths teacher asked us if we could tell the result of four to the power of zero. My first thought was that zero as an exponent didn’t make any sense, but then I remembered that dividing an exponentiation by the base number reduces the exponent by one, so the result had to be the base number divided by itself, i.e. 1.
The teacher said I was correct and went on with the lesson. This was one of the many occasions when I felt unappreciated; however, in retrospect I realised that he probably assumed I had this knowledge before, rather than having figured it out in a matter of seconds.
By the time we learned that Cro-Magnons had the largest brains of any Homo sapiens, I already knew that Neanderthals had the largest brains of any hominins and that they lived in the same area around the same time; therefore I concluded that they must have been the result of interbreeding, even though scientists back then categorically believed that interbreeding of the two species was impossible.
I got regularly beaten up by two boys in my class for being different. After a particularly bad hiding from one of them I decided to stand up against him, even though it might have been my death warrant. The next morning I broke two eggs on his head and his shoulder and wished him a happy Easter. He calmly walked off to clean himself up, and afterwards he gave me the thrashing of a lifetime during which he burst my eardrum.
One of the worst bullies was my German teacher. When it came to dictation, she had no choice but to give me 1s (equivalent to As), but she habitually graded my essays with 5s (D-s), claiming I had failed to address the question. One example was my essay on Why is the position of the president so honourable? in which I wrote that I didn't consider it honourable in itself, pointing out that the first West German president had voted for Hitler's Enabling Act in 1933.
For decades I kept wondering why, if I supposedly had failed to address the questions, she didn't give me 6s (Fs). Only recently I found out that a 6 would have to be countersigned by the school principal who probably wouldn't have gone along with it.
Every day after coming home from school I curled up on my bed for a couple of minutes to calm down. I often felt like screaming and banging my head against the wall instead, but I was aware that this wouldn’t solve my problems.
Like many other autistic children I occasionally contemplated suicide; however, it never got to the planning stage, and I never visualised any particular scenario. I always told myself that life would become bearable after secondary school; I was right, and I am very grateful to my younger self for this mature piece of advice. But still, over 30 years later, those six years of secondary school seem like they were the longest part of my life.
In order to get rid of my frustrations without drawing attention to myself, I started writing angry comments on random pages of my book collection, clenching the pen in my fist like a weapon; in the meantime I found out that even these comments didn’t go unnoticed.
All my life I had a need for seamlessness in things that interested me. I used to get terribly upset when I missed an episode of my favourite TV series or couldn’t buy an issue of my weekly music magazine. Today this need continues on social media; either I have to view every single post, or I rarely visit the site. In the meantime Facebook is the only one I frequent (even though I rarely interact), and I reluctantly unfollow a number of people in order to keep my feed manageable. (My networking skills are wanting, though, even compared to other autistic people, which unfortunately prevents me from reaching a larger audience for my works. I imagine future generations will wonder how I could have been ignored for so long, both as a poet and a sociology and autism theorist. On the other hand, not having a tangible audience means I'm not tempted to cater to others' expectations and sensitivities. Basically, as long as nobody listens to me, I can say what I think.)
I always hated the feeling of clothes tags against my skin, and my mother had to cut them out before I would put them on. This issue continued into my twenties and reappeared in my early fifties.
Like most other children I was forced to go to church. While I always cherish and stick to my own routines, those imposed on me by others make me freak. In church it was highly important to rise, sit down, fold your hands, close your eyes etc on a particular cue, and I was always scared to miss that cue. I remember stiffening up when going up to receive the Eucharist for fear of taking a wrong step, making a wrong move or accidentally dropping the wafer. On occasions I considered stepping on someone’s heel in order to defuse the situation, thinking that the embarrassment would be easier to handle than the pressure. On top of that, being told that someone was watching my every move, knew my every thought and would judge me based on them made me feel very tense, and I had trouble thinking of sins when asking him for forgiveness, not being sure of what he would consider one.
As for my church suits, I absolutely hated the feeling of the polyester lining. I had no allergic reaction as such, but their touch literally made my skin crawl. I had to wear them anyway until my mother had the idea to cut out the lining, just like the tags.
Around the age of eleven it dawned on me that there are no gods. I told my parents that I was an atheist but was still forced to attend services. For five torturous years I kept following empty rituals and repeating empty phrases while trying to keep a straight face. I felt guilty for being a hypocrite, even though I had been forced into that position. Eventually the mental struggle became too unbearable, and my mind fell back into belief.
I became a reborn atheist at the age of 25.
In school I found it relatively easy to follow the subjects that interested me, such as German, English, music and maths. As for subjects that didn’t interest me, such as physics or chemistry, I could spend hours studying the book and still not having a clue what the entire thing was about, and I only survived by memorising formulae and sentences I didn’t understand and, of course, cheat sheets. This hasn’t changed at all - when I research a subject of interest I can become entirely absorbed; when I’m being asked to do an assignment for a course I was forced to take, I can spend an hour reading the question over and over and still not grasping what is expected of me.
I had major difficulties with traditional teaching methods, and I found it a lot easier to learn visually and creatively. For example, as a child I was supposed to learn my English vocabulary by repeatedly reading the lists of German words and their English translations. It was boring, and there was no context, so instead I used the new words to create sentences or write short stories, and I believe that I still acquired a reasonable grasp of the English language. Rote learning doesn’t work for autistic children.
Also, my parents sent me to classical piano lessons, but I didn’t see the point in practising because, no matter how good I’d get, there’d be millions who’d play each piece exactly the same way; however, I also played piano in our school’s jazz band where I was able to experiment and improvise which I enjoyed far more, and I did a particularly great job with Frankie and Johnny (which unfortunately was drowned out by the brasses). Besides this, I also wrote my own tunes. Who knows, with a bit of encouragement I might have become a successful musician or composer.
While I had already written casual poems since I was a child, school had killed any interest in serious poetry since we only learnt of poets who were part of the establishment and promoted the status quo, such as Schiller and Goethe. And while Heinrich Heine couldn’t be ignored entirely, our schoolbooks only included some of his love poems. In my late twenties, however, I flicked through one of his collections in a bookstore and discovered how poetry can also be liberal, progressive, ironic and sarcastic and decided that this was the path I would take. Getting serious about writing poetry, I taught myself by composing an epic poem of almost 5,000 lines that included dozens of different poetic forms. (If you understand German and have time on your hands, you can read it here.)
Because traditional poetry is generally disregarded by publishers, I had a phase in my thirties during which I composed the occasional free metre, hoping this would further my career. And even though I received a special commendation for one of them, I discontinued them after a while because they aren’t really me.
As a poet moving to Sligo, many people assumed that I was a Yeats fan. I had never heard of Yeats before, and when I read his works, I found they didn’t appeal to me at all. From the beginning, however, I have attended poetry circles in the building of the Yeats Society where I could read my own work, and after I self-published my first collection, The Reaper’s Valentine, the society awarded me a scholarship to the Yeats Summer School 1999 (where Seamus Heaney complimented me on 'a very good feeling for the rhythm and the rhyme'). On a few occasions I was also asked to read my poetry at their functions.
I hadn’t joined the society, though, because I didn’t like Yeats. After realising that I’m autistic I started reflecting on my stance and came to the conclusion that I could join the society without liking Yeats and did so. (Ironically, I haven't been invited to read at their functions since.)
This happened because nobody ever asked me to join the Yeats Society. If anyone had suggested it, I wouldn’t have done it.
Time management is one of my weakest points. When I am given a certain amount of time for a task (such as an exam), I will usually panic and finish it in about half of the assigned timeframe, at the expense of thoroughness, quality and accuracy. On the other hand, without being put under pressure to finish in time, I would mostly stay well within that timeframe.
One of my parents’ attempts to deal with my learning and behavioural problems was the use of incentives, but this approach had to be scrapped very soon. I saw it as a rather obvious bribery attempt, and until this day such an attempt only increases my defiance.
I also couldn’t take their arguments seriously because they were inconsistent. When I was supposed to do something, I was often told that ‘everybody else is doing it’; however, when I wanted to do something everybody else was doing, I was told, ‘If everybody jumped off a bridge, would you do it, too?’
In many things I think I’m overly rational. I felt devastated when my paternal grandmother died, but I didn’t want to attend the funeral, telling my parents that ‘this would make me even sadder.’ What I was actually thinking was, ‘What’s the point? I won’t be able to see her or talk to her again.’
Besides this, like most other autistic people I prefer dealing with feelings and emotions myself rather than sharing them, and being expected to do so causes a lot of anxiety.
When I was 17 and secondary school was finally over, I felt great relief, knowing that the most horrible and degrading part of my life had come to an end, and that in just another year I would have my own say in my life. On the other hand, not knowing what the future held for me filled me with more than the usual level of anxiety.
I’ve always been terrified of the phone, and I will do anything to avoid making a call. This is due to the fact that I can't filter out background noises, such as traffic or the humming of the fridge, and am therefore prone to misunderstandings. Even if it is something as simple as ordering coal, I will leave it until it becomes urgent, and if possible, I will choose to send a text message instead. Today I only answer it if it is absolutely inevitable. Those who know me know better than to ring me.
From my late teens to my mid-twenties I attempted, more or less successfully, to be the funny guy in order to be accepted despite not fitting in.
While studying in Mannheim I came across an odd collection of individuals in the local advertising papers: the Pseudo Scene. Anybody could place a number of free ads, and some started writing nonsense, greetings or political statements under pseudonyms like Don Kaos, Muchamedow or The Blue Midget. One of my nicknames in the recent past had been Hazel, so that’s the pseudonym I chose for myself.
Soon regular pub meetings were organised; some pseudos introduced themselves with their pseudonym, others with their given names, and either was all right. This was the first time I was in the company of people I felt completely at ease with; they came from all walks of life, there were teenagers and grandparents, liberals and conservatives (coming to think of it, the few conservatives appeared a bit awkward amongst the rest but were accepted nonetheless), factory workers and professors, and all of them were appreciating our differences - a variety of people you wouldn’t meet under any other circumstances.
When I left Mannheim in 1989, I also had to leave this illustrious scene; however, due to the clampdown of advertising papers on pseudos it had been in decline already.
For the first time in my life I had met people who accepted me for who I am, and in hindsight it would be interesting to find out how many of the others were autistic as well (with or without knowing it).
During my summer holidays in the late 1980s I explored Europe by Interrail. On July 15, 1988, I arrived in Amsterdam and saw a poster advertising a Chuck Berry concert. Knowing my luck, I expected it to be over already, but it took place that very evening. Knowing my luck, I then expected it to be sold out, but it wasn't.
Towards the end of one of the greatest concerts I ever attended, Chuck Berry invited everybody who felt like it to join him and dance on the stage. When I approached, the bouncers told me that only the appointed dancers were allowed to go up. Initially I felt angry that Chuck Berry had lied to me, but after a split second I decided not to let this ruin one of my most memorable experiences.
I am easily scared. But no matter how afraid I am, I will always stand up for what I know is right, regardless of the consequences. On one occasion friends had left me in charge of their hostel, and one evening I heard loud screams from one of the rooms and went to check it out. I found a psychopath who was about to kill his pregnant girlfriend; my first impulse was to lock myself into the office and call the police, but instead I stood in front of him and yelled so furiously that he cowered in the corner like a frightened rat.
I never comprehended how people can understand each other in a nightclub or disco. In the meantime I learned that others have the ability to ignore the background noise and focus on the conversation; I never could. Even when I’m in a group where several conversations are taking place at the same time, I have to watch the speaker’s lips in order to follow, and I’m lost when they turn away from me or somebody pops their head up between us. In the aforementioned assault case, I was summoned to court as a witness; from my seat I was unable to see any of the speakers, and even though I tried to focus, I didn’t understand a single word that was being said. Fortunately I wasn’t called to the stand (at least I don’t think so).
Because of these problems I had my hearing tested when I was in my twenties. It turned out that I had perfect hearing, and I was told that my problems were a matter of focus.
I’ve always hated noise, and I even listen to Heavy Metal at low volume. Some sounds really make my skin crawl, such as the scratching of a polyester surface or the barking of dogs. In my own neighbourhood I have trained all of them to remain silent by means of a dog whistle (and later a vacuum cleaner whose sound seems to be even more effective).
From my first day in employment until this day, even in the most menial jobs, I’ve been afraid to get dismissed every single day I went to work because I’ve never been able to figure out how others perceive me. Until recently I thought that this fear was natural and that all employees have it; now I know that this anxiety stems from my inability to understand the social cues and fulfil the social expectations of others.
In workplace settings I find breaks one of the most annoying aspects. I never know what to do with myself during breaks and consider them a waste of time; I would prefer to work eight hours straight and go home early instead.
I have been in several relationships, all of which were initiated by my partners. And apparently I missed many other opportunities by my inability to interpret non-verbal communication. There were several occasions when I was madly in love with a girl but felt they were too distant or indifferent to have any interest in me, only to have friends ask me at a later stage, ‘Why did you turn her down? She was all over you!’ (Which makes me wonder how often this happened without anyone pointing it out to me.) - And even if they succeed in making their interest clear to me, I have no idea how to go about it and initiate a relationship.
Another relationship problem was my fear of losing my partner which led me to avoid disagreements and go along with everything they wanted. I left all decisions to them in order not to endanger the relationship, but as a consequence I often felt that they were too domineering and therefore broke up with them myself. This is something I realised and corrected in my forties, and since then I have been able to speak my mind.
One particular regret is letting go of a relationship I had during my first attempt at settling in Ireland in my late twenties. I lived in Galway with a German girl I had met there; neither of us was able to find work for a year, and according to the rules at that time we had to return to Germany. As much as I loved her, I felt she was getting on my nerves, and so I used that occasion to split up with her. In hindsight I realised the problem was my lack of privacy since we’d lived in a studio apartment; if I had been able to spend time on my own, we might still be together.
On a few occasions friends and acquaintances have cut me off without explanation. I wasn’t able to figure out their reasons, but I imagine that these were either misunderstandings, or that I breached some social rule I wasn’t aware of. In some cases being cut off followed a genuine request for clarification which apparently was considered offensive. I’m also guilty of letting friendships fade out through my failure of staying in contact. This doesn’t happen on purpose, but I find it difficult to communicate about trivia.
I always feel the need to justify any decision to myself, no matter how trivial and inconsequential it may be. I think of it as the Road Not Taken Syndrome. (The poem is probably the most widely misinterpreted one; the protagonist sees two roads that look similar in every aspect, but in order to justify his choice to himself, he eventually convinces himself that the one he takes is 'less travelled by'.)
There are occasions when I have difficulties with facial recognition, even if it is a person I met just the day before and found interesting. In rare cases I even have to meet people several times before recognising them. It also happens frequently that people I don’t appear to know greet me by name; I’d like to think they know me because of my poetry, but I’m not that famous yet.
There have been times when I socialised a lot while I lived as a recluse at others. While there are many factors involved, such as my financial situation after bailing out the incompetent Irish banks, the main one is that I prefer going out where I know people. If I visit a place where I don’t know anybody, you will find me drinking on my own unless somebody else starts a conversation.
My favourite haunts used to be places with live music (as long as it wasn’t too loud) or singalongs because the need for communication was limited to an acceptable level.
When I was out with others or attended a party, I mostly stayed longer than my social energy allowed because I didn’t want to be the first to leave. In these cases, while I remained in the others’ company, I phased out and ceased following the conversation unless I was addressed directly. Today I make my apologies as soon as I start feeling uncomfortable.
There were occasions when I was looking forward to a particular event, but on the day I just wasn’t able to leave the house. I never understood this before; now I realise that, other than for the mainstream person, socialising is an effort for me (even if I enjoy it), and sometimes I just don’t have the energy. After all, I have to read lips, regulate eye contact and facial expressions and focus to stay on topics that don’t bore the others.
The older I got, the less social I became. Until my late forties I used to frequent a pub around the corner, but one night I stayed home and watched a film; I decided to do this more often and only go to the pub every few days. The days turned into weeks, and after a month or so I realised it would be too awkward to show up again.
By the time the Covid pandemic struck, I lived a very solitary lifestyle, anyway, and apart from the inability to attend poetry circles, travel or visit my family, I was hardly affected by the social restrictions. (It should be noted, though, that this doesn't automatically apply to all autistic people; many of us experienced severe anxiety and mental challenges during this time.)
From the time I first attended school, I had been desensitised to noisy environments which helped me to visit pubs and nightclubs and work in loud factories as an adult. For almost two years after the beginning of the pandemic, the poetry circle was cancelled, and when we eventually reconvened and visited the pub afterwards, the noise almost drove me insane - after two years of silence I'm not sure if I'll ever get used to it again.
I never felt comfortable with my speaking voice, and the older I get, the more I feel my tongue getting in the way. In my thirties I overcame my fear of public speaking to participate in open mic poetry readings (even though I'd prefer to have them read by someone else), and following an autism conference at which I was asked to read one of my autism poems, I was invited to hold a speech at an autism conference in March 2020.
The conference was postponed due to the pandemic and eventually took place online where I spoke about The Necessity of Autism. The speech was well-received, and I was asked to record my most important articles for a project.
The project never materialised, but I decided to upload the videos to YouTube where I created the Autism Appreciation channel. I occasionally still add videos, but I don't have the stomach to listen to any of them myself.
And while I generally don't turn down interviews or invitations to speak at online events, I don't volunteer for them, either.
I have emotions like everybody else, but they don’t always seem to show. For example, I once checked my emails on my sister’s computer and found a notification that I had won first prize in a poetry competition. I could have sworn that I gloated when I told her, but she thought I was having her on because my facial expression remained unchanged.
I find it almost impossible to tell a lie, and when I do, it makes my skin crawl; even when I told white lies as a child (such as not having any homework) I felt uncomfortable. In my adult life I can count the lies I told on the fingers of one hand, and in all cases I did it to protect myself or somebody else or in order to spare myself a major embarrassment. (One of these occasions was telling a crèche manager who asked all employees individually that it wasn't me who had called the health service to investigate the appalling hygiene standards she had enforced to save money.)
I have very strong views which I consider to be perfectly rational and sensible; however, many people perceive me as stubborn and inflexible because of them.
I’m very defensive and have a tendency to view every comment or remark made about me or my work (especially by persons I don’t know too well) as criticism before even processing what they have said or written. I imagine that this is the result of a childhood in which almost everything I did was wrong in the opinion of others.
Whenever I feel a sudden emotion, I take a deep breath and reflect on whether this emotion is justified. And while to an extent this can be attributed to my penchant for logic, I am sure a lifetime of being gaslit has to do with it as well.
Since electronic communication has given me the opportunity to view previous conversations, I was amazed (and embarrassed) to find out how often I have completely misunderstood the other person - and vice versa. I might have missed the word 'if' in a sentence and therefore seen it as a statement rather than a hypothetical scenario, or the word 'not', thus mistaking a negative statement for a positive one. I also might apply something said to an entirely different context and thereby confuse others as much as myself. Only recently I have developed the habit of reading everything at least twice before replying.
And of course I wonder how often this happens in spoken conversations, resulting in replies that don't make sense or might even be considered hurtful.
Furthermore, I think I became slightly less controversial since my discovery. While I had been aware that some of my actions or statements were likely to provoke or upset others, I still went ahead with them because in my view they were justified. Today, even when I consider them to be justified, I additionally ask myself whether they are necessary.
I also used to have a tendency to over-apologise (i.e. apologise for the most trivial things which others may not even have noticed) which I think I may have conquered since I became aware of it.
When I'm amongst a group of people, I'm never sure whether I am an accepted member of that group or somebody whose presence is merely tolerated.
Even though nobody has mentioned it to me yet, I am aware that my social behaviour became more obviously autistic since my discovery. The reason for this is that in the past I put a lot of effort into trying not to appear too awkward - now I know that I am, anyway, and see no reason to conceal it. For example, as part of my masking skills I think I did quite well with small talk (even though it made me feel uncomfortable) which I now avoid as much as possible.
My main challenge with spoken conversation is my tendency to get sidetracked and go into detail about peripheral elements of my argument which more often than not deprives me of the opportunity to make the point I intended to make; I guess you could call it thoughtbranching.
Furthermore, I find it difficult to know when I can take a turn in discussions (especially those with more than one other person), and very often the conversation has moved on before I can make my point.
These are the reasons why I always prefer written communication to a conversation, as it gives me the time to express myself in exactly the way I intend to.
And even then it takes me a while to articulate myself, especially when it comes to expressing abstract ideas, no matter how clear they are to myself. There are times when it takes me weeks (and on occasions decades) to formulate a thought properly.
Talking about writing, when I compose a poem and rack my brains about what information to include or how to rephrase a sentence to fit the metre and the rhyme, I keep imagining that there is a master solution somewhere out there, and I can only get so close to it. This may be caused either by the pursuit of perfection (which is a common trait amongst autistics) or by an education system that taught us that for every question there can only be one correct answer.
I used to learn languages quickly, but I just as quickly forgot them when I didn't speak them for a while. (As my family assured me, even my German got a bit rusty in the meantime.)
People are surprised that, speaking both English and German, I struggle to translate from one language into the other. The reason is that my brain operates either in English mode or in German mode, like alternate settings that can't be combined.
In all walks of life I find that my own estimate of my performance differs significantly from what others think of it. I have failed tests I was sure I had passed while I passed quite a few tests I had expected to fail (especially if I hadn't put any effort into them) with honours, and at work I was reprimanded or praised when I least expected it. Some of my poems that I considered dismissing because I deemed them substandard met with enthusiastic responses while some I thought of as masterpieces generated nothing more than an indifferent 'well done'.
Raised voices have always caused me to shut off; not intentionally, but I find it impossible to listen to a person who is yelling. Even if I'm watching films, when there is a clamour, I often have to go back to see what happened because the moment it became noisy, my mind wandered off.
New beginnings have been a large part of my early life. Since I first moved out of my parents' place, despite the anxiety of facing the unknown, I always felt that moving gave me the opportunity to make a fresh start somewhere else and become less awkward and more socially apt. This always worked in the beginning, but it never lasted for long.
Over the years I have learned to reciprocate when someone shows an interest in me and to talk about the weather when it is necessary, even if I don’t see the point. When meeting people I pay attention to their right arm to see whether or not they prepare for a handshake, and at the workplace I think twice about sharing opinions. And these are just some of the coping mechanisms I have developed over several decades and which make me appear ‘almost normal’ today.
On top of this, being a foreigner in Ireland provides me with what I call blow-in allowances that make me more accepted here than in Germany. Of course nobody would offer me employment or let me marry their daughter, but on an informal level my unusual behaviour and opinions would be put down to my different cultural background and, at least to an extent, tolerated.
Many ask me if I know certain other Germans in Sligo and appear to be surprised if I don’t. And while it seems to be a fact that immigrants have a tendency to stick with their own countrymen, this can’t be said for me. Autistic people are less likely than others to subscribe to collective identities.
After discovering that I am autistic, I kept debating with myself whether to pursue a diagnosis. If I had been in secure employment, there would have been no need, but I was temporarily employed on a community scheme and soon would have to face the pressure from the unemployment office again. Therefore I decided to go for it.
First I went through the health service, and after half a year the psychologist told me that I may have been autistic as a child, but that he couldn't diagnose me now because, basically, I was masking too well.
I then went private and had no problem getting my diagnosis at the age of 50.
Afterwards I applied for disability allowance. While I don't see autism as a disability, we are being disabled by the unreasonable social expectations of others which we can't fulfil due to our individual nature. This makes us unlikely to succeed in job interviews and, if we manage that hurdle, to hold our jobs. Even though we tend to excel in our chosen professions, 85% of us are unemployed, and most of those who are employed work in menial jobs, regardless of their qualifications.
After my application was turned down, I won the appeal. This day changed my life.
After half a century of permanent anxiety and stress, not knowing what is expected by others and what to expect from them, I now was being left in peace. Even though I still apply for childcare positions and get turned down (even for volunteer positions), I'm not under pressure from the unemployment office to succeed.
Besides this, the back payment for the time it took to process my application and appeal and the perks that come with disability allowance in Ireland (such as free public transport) in combination with my increasingly minimalistic lifestyle have ended three decades of financial struggle.
I had always believed that anxiety is a natural part of life. Now that anxiety is gone, and now I know that even autistic people can be at ease.
Like all autistic people, I walk a tightrope between my desires to be my authentic self and to be accepted, but the former appears to be a lot stronger. And the older I get, the more I prioritise what I have to say over what people want to hear.
I also noticed that the more I remove myself from society, the clearer my thinking becomes.
Compared to others who received a late diagnosis, I seem to have had a bit more confidence. While many, before their diagnosis, kept thinking, ‘What’s wrong with me?’ I kept thinking, ‘What’s wrong with everybody?’
I couldn't fathom why most people are so easily manipulated, biased and irrational. Now I know that, as demonstrated by this study, being unbiased and rational tends to be unique to autistic people.
Since my discovery I have reflected on the nature of autism and eventually concluded that autism is a social construct for people who resist social conditioning, culminating in my Deindividuation Resister Hypothesis. ('Abstract: All children are born with individual identities, but almost all of them undergo social conditioning and are forced to take on collective identities instead. Human progress is driven by people who resist social conditioning [or are not subjected to it in the first place] and retain their individual identities at the cost of being ostracised and pathologised while those who identify collectively provide the network to spread it.' – 'Our intellectual advantage and our supposed social deficits are two sides of the same coin, and any attempts at "correcting" the latter will diminish that advantage. […] It’s our failure to conform to society, it’s our failure to think the way others think, it’s our failure to subscribe to group dynamics and groupthink, it’s our failure to give in to peer pressure, it’s our failure to blindly follow tradition, it’s our failure to unquestioningly obey authority, and it’s our failure to accept the status quo that have driven human progress for tens of thousands of years, thanks to autistic individuals who successfully resisted attempts at being mainstreamed.')
