My Personal Experience with Autism

I am diagnosed with Autism since I was 17 (in those days, historically Asperger’s Syndrome) and the purpose of this writing is to share my own personal experience with having Autism, my intention is to represent the disability truthfully as best as I can from my own knowledge of my life in the hopes that it can serve the purpose of education and understanding of Autism if possible.

What is Autism?

I had an explanation for this question, and I was going to give it, but I decided not to, because it would probably not be correct, it is far too complex and I do not fully understand it either. Although I can say with certainty that Autism is a physical process affecting brain development.

Part 1: Early Youth

I seemed like a normal child, I was not diagnosed with Autism from a young age like many with the disability, it was very rarely heard of in the countryside villages throughout the late 1990s and early 2000s where I grew up, I was not being too obviously different from what is generally normal child behaviour.

My earliest memories are from when I attended Nursery, I was afraid of people from the beginning. I did not speak at Nursery and it was noticed eventually by the staff, they asked my parents to secretly record me at home, they were shocked that I appeared fine and could speak at home, it was assumed I was Selectively Mute as I appeared to have no clear functional difficulties in learning or movement. It is incredibly difficult to tell at that age due to the similarities with normal child behaviour and general shyness, it was assumed I would grow out of it eventually and needed some more time to adapt compared to other children. I eventually began to speak, but very little, through Primary school, I did not use my own voice, I attempted to copy another person’s voice and used it throughout Primary school until I went to High school, I am not sure why I did this but I do remember distrusting people to hear my voice.

At home I developed repetitive movements, I successfully hid these movements from everyone until I was diagnosed at 17 when I openly confessed my repetitive behaviour to the Autism specialists and my parents, I feared it was abnormal and if found to be repeating patterns then I feared being put in a mental institution, I hoped I would grow out of it. The repetitive behaviours were often tiresome, I did not understand why I did them, but they often felt good to do, as if like a sense of completion, I would definitely prefer to not do them, but often it is difficult to resist and I am not always consciously aware when I do them, it is often automatic. My repetitive behaviours at that age included constant physical touch of things in a regimented manner while counting how many times I did so and the directions of these physical motions in set numerical orders.

I was determined to do well intellectually at school, despite the difficulty, I could never achieve that high level, but I really often only cared about home, my simple interests and my family at that time. It was a struggle to make friends as I did not speak much, I did not approach anyone and I did not know how to speak to people socially, when asked something I replied only one word or said nothing at all, just nodding, I was confused why people talked to each other, when I listened to them  I would just observe and not join in the conversation, my mind was always blank, I felt no words to say.

My methods of speaking and confusion at that time did not serve me well. Despite the social difficulty of Primary school, I was still accepted by my class and people did help to include me in activities. It was a village school and the community was fairly close-knit of countryside and village peoples. I come from the countryside, as do my parents. Home life as a child was great, I loved computers and Playstation from as young as I can remember, the awe of seeing a computer for the first time, I spent as much time as I could playing games, it was usually the first thing I would do when I got home from school.

My parents often wanted to go out to places, I often stubbornly refused, there was days I did not want to go anywhere and it led to mild arguments and I would have to go, I was not fond of the outdoors and I rarely went outside, I found it uninteresting at the time compared to the indoors. I did enjoy restaurants at times, but I did have an eating problem, I refused to eat food much of the time, it was difficult for my parents, I complained often that the food tasted bad, that I must eat the same thing everyday, and that texture and taste is important to whether I eat or not. My perception of food affected the taste, I expected it to be bad before I tried it, often this perception overpowers the real taste of food, my perception did not serve me well at all but stuck with me throughout most of my life.

Part 2: Diagnosis

As I got older it became more difficult to keep up with the other children, the social difficulties escalated in High school, I still did not speak much at all and never really had a conversation through that time, but still I did not care much, unfortunately being alone made an easier target for bullies, and I was verbally abused every day about my appearance. The bullying set me back a lot and I feared school, it would be perfect without the students, I was interested in IT, history and geography and attempted to be a learned and mature student, inspired by my love of the various Star Treks TV shows, which I watched everyday after school unfailingly, this gave me an early moral guidance, understanding and desire to mature, I hoped to do well. I did fairly fine, mostly averaged Cs in my GCSEs, a B in IT and a D in English. I fell further behind socially, and I became aware of it, it made me constantly sad and I felt loneliness, along with the despair of not knowing how to fix it. I had assumed I was just shy, that I would grow up and change soon enough, but it seemed to not be happening and the problem persisted.

I severely hated break times at High school, I stayed in the building while almost everyone was outside, but unfortunately some areas of the building were put on lock down during lunch, which meant there was not much places to go to avoid people. The library was a haven from the many lunatics but I had to knock on the door to be let in and I was very hesitant to be a nuisance every lunch to the librarian, so I waited until other people knocked and then tried to join behind them to get in. The library also had computers where we were allowed to play games. I rarely ate at lunches and often ate nothing until I got home, due to the terrible taste of things, especially from the school canteen where most of the food was either raw or very cold. When High school ended I was very relieved, I was severely losing my sanity at that awful place, it felt like a prison.

I had to go to college after High school, despite not wanting to, I had to get a good education but I wanted to rest. I took an IT course, I liked the mature environment because everyone was an adult or at least treated like one, but there was the social problem and it became extreme, I did not learn how to have conversations, I remember the look of peoples faces when I failed to respond, the realisation that I had not changed broke me into pieces and I socially withdrew to a new extreme, I was shaking, stuttering, no eye contact, fixed and locked into position, I thought I was in shock, maybe depressed or anxious. The teacher noticed along with a learning support officer, I was talked to about it, my parents were told and I was recommended to go to the doctor.

The doctor thought I had Autism after just talking to me, I did not know what Autism really was at the time and assumed it included learning difficulties, I thought the doctor was wrong and that I just needed some counselling support but I went along with his referral to an Autism assessment with an Autism specialist just to see what would be proven by the process.

I went through the assessment with two specialists working together to assess me, I was impressed by their methods, they had a great attention to detail and proceeded from a position of doubt like all great scientific people. I gave my words truthfully and openly at the time and did their physical tests, they concluded that I had Asperger’s Syndrome, I was surprised but relieved to know the name to the problem. They said they would be in touch a year after but I never heard from them again, I received no help directly afterwards as I turned 18 and there wasn’t really anything much at all for adults at that time. I doubted the diagnosis and often rejected it, I had wished it was false, I had felt doomed to a permanent problem and that my adult life would be difficult. I eventually had to come to acceptance, I was still hopeful at 18 that I could change and adapt to adult life, but it did not happen in the way that I so hoped.

Part 3: The Present

After painfully finishing my IT course I took a rest from education and began working on personal interests, namely playing games on my computer. I picked up guitar and began learning at 19, I felt I had not developed my hands and thought music would fix that. I tried a bunch of interests such as writing, poetry and drawing. I began to read after many years and took an interest in cultures, philosophy, strategy, scientific method, history and politics. It was a struggle but I pushed myself to learn and hoped to learn it all correctly, much of it did not stick but I am glad I tried as it was greatly beneficial.

I eventually sought out Autism groups after feeling despair from loneliness, in the hope I could better make friends with other Autistic people. I joined the Southern Trust and attended in Lurgan, their Autism services helped me a lot and I got on well with the staff, their methods were to listen to us Autistic people and let us lead and the team would give us support, I found this to be odd as I look towards educated or authority positions to lead me as I often have no clue what to do about Autism or many other things and that is the reason I am there. I did not make friends although I got on well with some. I got to play guitar with a few others but I had to leave to go to college again. I planned on studying music.

I was hopeful returning to college to learn music, I was older, a bit more emboldened from the support I was given. I did really well in class, especially as I was very inexperienced, but I managed to get top of the class for all three years I was there. I made one friend, a very great and genuine one friend, a fellow Autistic who also had many of the same problems as I. We had a similar upbringing and cultural influences, we were both closer to our parents interests rather than the typical youth interests as we neither had friends to learn from so we made friends with our parents. We are still great friends to this day.

I struggled to make friends with the other classmates, but I learned to not care as much and that it is impossible to be everyone’s friend, even if the greatest personal effort is given. I did try with some people and friendships sort of formed but sadly I was often betrayed and deceived by them, my friendship was always genuine, but theirs was fraud, it hurt a lot when I realised. I learned the hard way that some people are just very cruel, I don’t understand why they choose to be. Group activities in the course was often frustrating with classmates not doing their work or changing songs so often, it began to ruin my interest in music and severely tested my sanity. I was very grateful when it ended despite some of the learning being fun.

After I finished my course, things were up and down for a time, I rejoined autism groups, tried going outside and taking an interest in nature, I volunteered and enjoyed it. Unfortunately I suffered major losses in my life, which were completely out of my control and I broke down and ceased to function. It was all too much. The Autism groups ended, volunteering ended, I had nowhere to go. I stopped going outside entirely and I lived like that for a few years. I was sad everyday, barely ate much, developed allergies, was stressed all the time, my sleep was chaotic. It seemed never ending. I went to the doctor but he was no help, he thought a walk in the park would help me, but it made me worse. I thought I needed counselling but I had no idea how to ask.

I began to decline during this time, it became difficult to think or move, I would often go on hour long rants about nonsense and struggle to learn or do my interests, I gave up a lot to attempt to feel better. I stopped playing guitar and often wouldn’t play games as much, I would watch other people play instead on the internet. I stopped listening to music entirely, I forgot everything I used to be. I withdrew massively, refused to leave the house even to stand at the back door, I felt massive pressure on my brain, like trying to push myself to know things beyond what I can handle so that I could fix my own problems, I would mass read things but completely exhaust myself afterwards. I did however manage to learn philosophy more during this time and it gave me a sense to fight delusions that I was having and also the delusions gained from other peoples that I previously assumed were genuine. I learned that people generally don’t know things and often are so confident that they do, to great destruction.

I learned more about Autism during this time and how much misinformation there was about it on the internet, this angered me often as it was very widespread and unopposed, even having a presence in our country and this demoralized me greatly giving a fear of losing support and the harming to the scientific understanding of Autism as a physical process being replaced by some spiritual mumbo jumbo nonsense such as a difference of mind and a personal feeling or choice. If Autism was a difference of mind then I certainly would have changed my mind many years ago, if only the physical problems would go with it! I still am angered by these things, despite being calmer today, there is much to say on it, it is very important in my opinion.

Eventually after some years of suffering I managed to get counselling and it helped to get over past issues and develop the realistic positive mindset that broke down many of my delusions and fears. Sometime after that the Autism groups started up again after a long time of deprivation. Some were completely useless, they refused to give help, unsurprising they also claim Autism isn’t a disability, which is probably why they don’t give support, they don’t believe we need it. I was told the funding they received was better spent lobbying than on support for Autistic Adults.

Luckily I joined Bolster Community, which I shall sing the high praises towards, they helped me greatly with giving activities, amazing support and I am greatly fond of the Autistic people that attended. Gradually over time I felt better since counselling, and I no longer felt sad. The constant sadness of 15 long years had dispersed by the time I joined Bolster and I manage now to defeat any problem I feel, despite the intensity. I no longer feel loneliness, I learned that I actually prefer being alone with my interests rather than chasing typical one-sided friendships. I became really calm, rarely felt anger as much due to regaining hope in humanity. I feel confident in my ability nowadays, although I still struggle greatly and did not adapt well to adult life.

To describe my life today I will say that I live with my family, my mum is my carer and looks after me, I have not yet learnt how to drive despite trying to learn and failing, I have one great friend and some acquaintances but no real emotional closeness with people except my family, I never yet had a job but did do work experience and volunteering, I don’t know many typically known adult things as I am behind developmentally, I may seem somewhat childlike or sound like an old man depending on the subject and I am aware of this, I have not yet learnt how to cook despite trying to learn all my life as I keep forgetting the process of things and am very slow, I cannot yet look after myself and I think I will always be in care, I am slow moving and slow turning which is often personally annoying as it takes me a long time to shower or do things, I do repetitive movements which annoy and tire me, I tire easily and feel physical strain from the simplest tasks, I strain mentally easily from simple tasks especially social but I do overestimate my limits which is why I strain, I still struggle to socialize despite learning how to speak better and I often withdraw socially and do not understand other people or their reasoning well, I am naive which makes me vulnerable to the intentions of not nice people, I am vulnerable physically and mentally and become distracted much easier nowadays, I am unable to leave the house alone as I require constant guardianship else I become confused and unable to figure out how to return home, I do not yet know how to get a bus, I can buy things with support but it took until my mid-20s to learn that process, I do not yet know how to handle finances or benefits and it is usually handled for me as I do not understand the process, I spend almost all day at my computer and have done so for most of my life, I play games on computer for very long times and they are often complex like management games or various strategy, I have returned to and often read in detail about philosophy, history, strategy and politics but I refuse to speak these details to people outside my family and often outside myself, I sometimes play guitar when I feel the want to play, in recent years I spend the entire day in my pyjamas as changing has become more physically difficult, I often fear people in general, I am afraid of speaking to people despite caring about people but I know I very rarely show it, I fear the future especially inevitable changes that I may have no support with, I wish I had better control of myself and a stronger consciousness to overcome many of my problems, I am disabled and as far as I am aware that will not change anytime soon. I have declined as I have gotten older and things have become more difficult but I think I have become wiser or at least sometimes clearer minded.

Autism to me is no sunshine and rainbows and it certainly is no superpower, I am not a superhero nor a fantasy creature, I am a mortal man and a human being, Autism is a disability, a persistent problem in my life, one that I have to live with and adapt to, despite what desires, wants and wishes I used to hold dearly, that I was forced to give up to live happily, I have found happiness in some ways, one is alone with my interests and one is with my family.

Conclusion

I would like Autism to be fully known and understood, the research and the proving is not here yet in our time, it is held back by people, as expected. I fear potential loss of support, at least temporarily, as is being driven by some people under the guise of Autism. Despite this I am confident of inevitable change coming in the future to rid away the nonsense and look forward to the important work and support that will be given by the most genuine.

There may be more to say, as there always is, there certainly is more to do, as there always is.