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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 parents had more ambitious plans for me.
At the age of 21 I started studying labour administration in Mannheim where my parents had secured a place in the department my father worked for, even though I wasnít 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.
This was the first time I met a child that had been diagnosed with autism, and since then I realised that I relate particularly well to children on the autistic spectrum (and vice versa).
At the age of 26 I stopped trying to fit in and started living by my own design. After a while I decided to do what I had initially wanted: get my childcare qualification and move to Ireland. At that time I was blissfully unaware that this is the worst possible combination of gender, profession and location in Western Europe.
One girl in the crŤche, letís call her Martha, had been diagnosed with autism. She didnít avoid the other children as such, but she didnít initiate any contacts and seemed entirely oblivious to the subtle approaches from other children whom she didnít even talk to (she talked to staff, though).
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 crŤche 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 Ė why was she asking me all these things?
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 wasnít always the case. The way to becoming an accepted if somewhat awkward member of society by developing more and more coping mechanisms was a long, embarrassing and exhaustive one.
When I was a child, Hans Asperger was still alive, but the condition named after him would not be identified until 30 years later. My speech development was normal and, by permanently nagging my parents about letters and words, I had taught myself to read and write before I went to school. Therefore nobody even suggested that I may be autistic, even though there were indications. I was simply a Ďdifficult childí.
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 succeeded in being fed 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.
An often told anecdote is how I kept touching the rings on the hob when my mother was cooking. According to my parents, they kept telling me that the plates are hot when the lights are on, but that wouldn't stop me. While I don't have any recollection, I am sure that it was my curiosity taking over: after all, when a ring had just been switched on, it is still cold despite the light being on, and just after being switched off it's still hot despite the light being off. I had to get to the bottom of this.
At the age of three I was enrolled in a crŤche 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.
I often ponder on the question 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', been told that I could never live independently and probably 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) which is based on dog training and aims to suppress autistic behaviour 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 donít 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 didnít matter. Everything I enjoyed seemed to be forbidden, and I kept thinking of new activities that hadnít been banned yet.
My seizures ceased when I was five, but absence seizures continued in situations of sensory overload or unbearable pressure or anxiety. The more control I got over my life, the less frequent they became, and in my late teens they had disappeared altogether.
I was perceived as being defiant, and I had a habit of not accepting anything without being given a good reason. To be frank, I still have this habit, but I have learned to manage it and to refrain from it 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 canít recall much of what 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 ant hill. I also spent a lot of time reading books and writing poems and stories.
I had few friends; in all cases the friendship was initiated by them, and I had a feeling I wasnít their first choice. I refrained from approaching others myself due to a combination of fear of imposing on them and fear of rejection, and this hasnít 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 isnít too embarrassing.
My fine motor skills such as swimming or riding a bike were considerably delayed. 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.
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.
Every day after coming home from school I curled up on my couch 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 wouldnít 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 didnít go unnoticed.
All my life I had a need for seamlessness in things that interested me. I used to get majorly upset when I missed an episode of my favourite TV series or couldnít 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 donít follow the site at all. In the meantime I only visit very few of these sites and reluctantly unfollow a number of people in order to keep my feed manageable.
One of the things that drove my parents mad was that I constantly had my hand in my face, usually squeezing pimples or scratching my face, and the condition of my skin allowed me to continue squeezing pimples into my late twenties; afterwards I started pulling stubbles. At the age of 19 I started smoking a pipe which allowed me to keep my hands busy in a socially acceptable manner when I was in company (remember, that was in the Eighties) while I still continue my stubble-pulling (I think of it as grooming) when Iím on my own. Now I know that this is called stimming.
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.
As most other children, I was forced to go to church. While I always cherish and stick to my own routines, routines 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 someoneís 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 inlays. 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 them out, just like the tags.
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 didnít 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 didnít understand and, of course, cheat sheets. This hasnít changed at all - when I research a subject of interest, I can become entirely absorbed; when Iím being asked to do an assignment for a course, 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 creatively. For example, my parents sent me to classical piano lessons, but I didnít see the point in practicing because, no matter how good Iíd get, thereíd be millions whoíd play each piece exactly the same way; however, I also played piano in our schoolís 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). Who knows, with a bit of encouragement I may have become a successful musician. And when I got serious about writing poetry, I taught myself by composing an epic poem of almost 5,000 lines that included dozens of different poetic forms.
I also noticed that I find it a lot easier to learn visually.
One of my parentsí 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.
In many things I think Iím overly rational. I felt devastated when my grandmother died, but I didnít want to attend the funeral, telling my parents that Ďthis would make me even sadder.í What I was actually thinking was, ĎWhatís the point? I wonít be able to see her or talk to her again.í
When I was 17 and secondary school was finally over, I felt a 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.
Iíve always been terrified of the phone, and I will do anything to avoid making a call. 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 to family, landlord, employer and in case of official or urgent matters. Those who know me know better than to ring me.
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 in 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 Iím in a group where several conversations are taking place at the same time, I have to watch the speakerís lips in order to follow, and Iím 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 didnít understand a single word that was being said. Fortunately I wasnít called to the stand (at least I donít 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. (This was still ten years before Aspergerís was identified, otherwise it might have been suggested.)
Iíve 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.
From my first day in employment until this day, even in the most menial jobs, Iíve been afraid to get dismissed every single day I went to work because Iíve 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 read social cues, facial expressions or body language.
In workplace settings, I found breaks one of the most annoying aspects. I never knew what to do with myself during breaks and considered them a waste of time; I would have preferred 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 where 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, ĎWhy did you rebuff her? She was all over you!í (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 mid thirties, 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 weíd 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 wasnít able to figure out their reasons, but I imagine that these were either misunderstandings, or that I breached some social rule I wasnít aware of. Iím also guilty of letting friendships fade out through my failure of staying in contact. This doesnít happen on purpose, but I find it difficult to communicate about trivia.
When I have to take down a name or phone number, I have to ask several times. For example, if someone spells CEARBHALL, I take down the C and maybe the E as well, but while Iím focussed on writing I canít listen, so I will have to ask again. Usually I spell the name out as I would write it myself and wait for corrections.
I have a need for symmetry. For example, I donít like multiple light switches facing different directions or people moving the ornaments in my house. However, I have learned to look away from these things rather than getting upset.
I have a very short memory and find it hard to remember details from just a few days ago. Itís almost like everything in the past is filed away not to be taken out again.
There are occasions where 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 donít appear to know greet me by name; Iíd like to think they know me because of my poetry, but Iím 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 donít know anybody, you will find me drinking on my own unless somebody else starts a conversation.
When I was out with others or attended a party, I mostly stayed longer than my social energy allowed because I didnít want to be the first to leave. In these cases, while I remained in the othersí 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 wasnít able to leave the house. I never understood this before; now I realise that, other than for the average person, socialising is an effort for me (even if I enjoy it), and sometimes I just donít have the energy. After all, I have to read lips, regulate eye contact and facial expressions and focus to stay on topics that donít bore the others.
I have emotions like everybody else, but they donít always seem to show. For example, I once checked my emails on my sisterís 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.
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.
Iím very defensive and have a tendency to view every comment or remark made about me or my work (especially by persons I donít 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.
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 twice before replying.
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.
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 overapologise (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.
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.
A major aspect for me is the processing of language. While I started talking quite early, and while I donít think anybody who knows me would consider me to have a speech problem, I often struggle to find the correct term for what I am trying to express. I would be looking for a particular word but, unable to think of it and feeling under pressure not to pause the conversation for too long, Iíd (often unsuccessfully) try to think of a similar word. In many cases Iíd end up either using a term that may be related to the one I am looking for but still fails to convey the meaning of what Iím trying to say or, even more embarrassing, a word with a roughly similar sound to the one I was looking for but an entirely different meaning (such as moment instead of momentum). On one occasion I was contradicted when I insisted that certain sea animals were mammals; when I replayed the conversation in my head, I realised I had said Ďsharksí even though I had meant Ďwhalesí and felt terribly embarrassed. Interestingly this problem becomes more severe in cold weather. (This phenomenon has nothing to do with English not being my first language since I face this problem in German as well.)
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 seems to be a common trait amongst autistics) or by an education system that taught us that for every question there can only be one correct answer.
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 which 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 donít 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 Ďalmost normalí today.
At the age of 50, one year after realising that Iím autistic, I was diagnosed with Aspergerís Syndrome. However, I call myself autistic because I consider any differentiations of our condition as less than unhelpful.
Do I see my condition as a disorder? Ė Not at all!
All the problems Iíve been encountering due to it are resulting from the expectations of others. We function differently, but that doesnít mean we function less. And while the condition is a social disadvantage, it brings a lot of advantages with it: we may not be able to multitask, but we are able to concentrate on something of interest more intensely than others, and we are more likely to think outside the box, resist peer pressure, overcome childhood indoctrination and, because of our ability to focus obsessively on our particular interests, make important discoveries and inventions. The biographies of many (if not most) great scientists suggest that they were autistic, such as Darwin and Einstein, and the same can be said about artists. Professor Temple Grandin phrased it quite provocatively, ĎWhat would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.í
I am convinced that the autistic spectrum provides an enormous potential for the progress of mankind, a potential which has permanently been interred beneath traditional teaching methods, but which could be unleashed by finding appropriate ways of creative and self-directed education that suit our nature.
I wish this were the last generation to scrap the gifts of its autistic community.
For centuries, if not millennia, sinistrality (left-handedness) has been considered a disorder, but all the problems of those affected were the result of an environment that had been designed for right-handed people. This attitude has only changed in recent years, and sinistrality is not considered a disorder any longer. In my opinion, the same applies to autism - our problems are the result of an environment that is designed for non-autistic people, and it is about time to cater for our needs rather than trying to Ďcureí a large and important part of the human spectrum.
I will close with a quote from Hans Asperger who, unaware that the condition he described (and most likely had himself) would later be named after him, stated, ĎIt seems that for success in science or art a dash of autism is essential.í