My Autism

I have autism and I am uncomfortable talking about it but it is for all the reasons you might not expect. A part of my reticence to divulge that I am autistic is because the term is very broad in meaning and not well understood biologically or socially. When I tell someone I am autistic they do not know what that means about me nor do they know what response I expect of them in return for my revelation.

The other part of my discomfort with the subject is that I feel like a fraud. While cultural perception is changing the view is still largely that autism is a disability. This is not an unfair view to have as for many that is exactly what autism is, however there are the lucky few to whom autism is a gift. I count myself among the lucky ones and feel as if I am being disrespectful to those who struggle with autism when I say that I have it also. It is confusing for others as well when they see people requiring life long care due to autism and then are confronted with someone like me using the same descriptive term to describe themselves and so I don't often bother.

Better terminology would be a great help in this matter. I have tried using phrases like “a little bit autistic”, “high functioning autistic”, or “on the spectrum” to better describe my condition but these feel just as ambiguous as well as attention seeking and pompous, and so I gave up trying. Mostly now my friends and family will break the news to any new person on my behalf which saves me the awkwardness. Usually however they are doing so in an attempt to calm down some social faux pas I have made! “Oh, don't mind Nick, he isn't being an arsehole, he is actually autistic.” Once you know me a little bit it is much easier to put the term “autistic” in an appropriate context and not have it either be meaningless or misleading as it is when you have no knowledge of my character.

I only discovered I had autism in my early twenties (about ten years ago) and have not since bothered to get diagnosed, both of which facts exacerbate my feelings of being a fraudulent autistic person. A diagnosis is only needed if you wish to get care, indeed the fact that I don't need any care means I wouldn't get a clinical diagnosis. This is all well and good, I don't need care and so not being able to get a diagnosis so as to obtain care implies that the system is working as intended. The problem is that while I don't require any care I do require understanding. By having the system not really recognize those who don't need any care they perpetuate the social perception that autism is exclusively a disability.

As the general aim seems to be getting autistic people out of care and into society it seems a little odd that most of the studies into autism overlook those who have managed to avoid needing care themselves. I have been very lucky in a number of ways, all of which have greatly helped me to get along in society. I can easily imagine that by changing the conditions of my life very little and nothing about my autism at all that I could have wound up being a far greater burden on society. I hope that by writing my experiences of growing up with autism and finding my place in the world I might help those without autism to understand it a little better and those with autism to perhaps find some idea as to how they might cope better.

I am overly confident, indeed arrogant in many ways. So much so that a teacher told my parents this at a parents evening when I was about eight. They didn't like her or care very much but did relay the message to me none the less. I was oblivious to my arrogance or its affect on others at that time. I really benefit from being told things, they are not obvious to me. I knew that arrogance was not socially acceptable but couldn't make the link to my behaviour. Once pointed out that I was arrogant I could observe that trend in myself and rein it in. I am no less arrogant now that I was then but I have learned how to filter it out or counter it with humility in the few things I don't still think I am amazing at. This is typically how I have learned to fit in with others, by someone eventually disliking me enough to honestly point out my flaws so that I can realise them and address them.

I spoke of filtering things out, this is something I think neuro-typical people do automatically. My filter is manually operated and requires a lot of effort to work, not to mention a lot of mental engineering over the years to craft it. I find that now meeting new people or formal social affairs very draining as those are the occasions I am operating my filter at full. When I am relaxed around people I know and am comfortable with my filter is off and I speak my mind. I am very good with animals and attribute a large part of that to having the default state of no mental filter. I find both animals and people trust me readily and again I attribute this to being able to operate while fully expressing what is one the inside.

The day that I learned I was arrogant was the day that I started to build my filter. I was only really aware I had been doing this when I learned that I was autistic and therefore probably not alike to other people in how I saw the world. I figured everyone consciously had to work at not saying something offensive or inappropriate. It is like having to check down a list of things in your memory every time you use a new word or phrase in a situation. I am fully aware that I can come across as very stupid if I am caught off guard by a question or comment. If I have no past experience of how to respond to something that I can draw from, or even if I'm not very mentally astute due to something like just having woken up and thus am unable to recall those experiences I have had that would help then I can flounder for words and appear to shut down.

My filter is greatly refined compared to how it was by the time I discovered I had autism. My better understanding of myself has aided me in being able to compensate and improve my filter however it is the help of others, mainly my partner, in informing me of the way they perceive things and me that has helped. Essentially the most helpful thing in my being able to get along in society was having someone by my side to tell me not only when I am being an arsehole, but also why and their “normal” perspective on my actions.

Socially I am still rather clumsy and the further you go back in time the worse I get at an increasing pace. Oddly my arrogance to the rescue again as it provided an unusual defence mechanism for my poor social skills. I was quite able to loudly take control of a social situation and become the centre of attention. This is a trait I very much acquired from my mother. The trick is that by controlling the whole situation you never have to interact with anyone. If you are disrupting the whole class by putting on a clown show or playing up you become an actor or entertainer to be watched. It gives the appearance of interaction but is devoid of any complex things that I didn't understand or required too much effort to master. As soon as dealing with other people become too much I was off doing something unorthodox or radical taking the attention away from me and onto my actions. I fall back into this habit quite readily when drunk but otherwise tend to take a more recluse approach to not having enough energy to deal with a social situation these days.

At school I was not popular, the unusual things I did, coupled with repugnant arrogance, awkward social skills and an alarming tendency to speak my mind even when I thought little of things all contributing to my popularity. To say I was bullied would be misleading, being fairly big and growing up in a fairly nice area meant there was basically nothing physical that came my way I can recall. There was plenty of verbal abuse and exclusion however this was something most kids get at some stage and something I thought I largely brought on myself, even at the time. I gave as good as I got and the difference was I sincerely believed what I was saying which tended to give it more weight. I vividly recall getting some grief from my peers and the teacher for replying to one of the less intelligent people who was calling me a boffin that I would rather that than be thick like him. I was surprised at the condemning response of everyone else, I thought I had replied in kind and was being as fair as one can be in an insult slinging contest. It was experiences like this where people actually informed me of when my actions are unacceptable that gave me a reference frame or check-list of how to go about acting in future.

The abuse I got made me fairly thick skinned but it rarely bothered me that much. The other kids didn't like me very much but then I didn't like them very much so that all felt good and reasonable. I have always been perfectly happy entertaining myself and in my own company with just my thoughts. I didn't really form any proper friendships until I was about 13 or 14 with anyone my own age. There were a few older kids who I found fascinating that I hung around with but at school in my own year I didn't have friends as I would define it. I found I naturally ended up with whoever the next least desirable person in the room was and sort of out of expectation I would find myself doing things one does at school with them. These relationships were volatile, there was little understanding between us and I am sure I was very mean to many of those people I spent time with in my earlier school years. I think I attracted other outcast types at school because I seemed to revel in the abuse, if I was with someone else then I would be getting the abuse and who ever I was with was getting respite. Another fantastic irony that my greatly dislikeable nature made me attractive to certain kinds of people. Even when I started to get what were more ordinary friendships I still got loads of abuse from other kids. I likely brought it on myself more as I felt more secure in having real friends. What I didn't realize so clearly was that people didn't always see things like me, I assumed my friends felt like me and I was generally surprised to find them unimpressed with me giving abuse to people they were friendly with. This mostly caused problems in group situations, which I still struggle with to this day. One on one I can interact fairly well with people but in a group, particularly one with unfamiliar people I am inexperienced and prone to doing awkward things.

As well as older children I found I got on well with girls when I was younger and had more kindly relationships with them. Girls mature faster and although I was very immature I was drawn to the mature. I also think that girls are less mean to boys than boys are to boys which meant that there was less often abuse to start escalating and reciprocating. I attribute a large part of being able to form friendships with my peers to having shared interests. Before I had any real interests of my own I was only drawn to people who I found interesting and this was typically the different, the mature and the experienced. It was not until I had my own interests in things that I had any common ground to interact with people and it was not until I was old enough to be afforded enough independence that I could really acquire my own interests.

Interests are hugely important to me even now as a mechanism to interact with people. I can talk to complete strangers about some topics indefinitely however I struggle with small talk and basic interactions with people I know well. I am a massive gamer, I always have been and probably always will be. Games have rules and are highly specific. I can easily describe, discuss, analogize, break down and explain things like games. This gives me a firm bedrock by which to interact with people who share an interest in one of these kinds of thing. Science is another example of an interest I have that I have little difficulty using as a tool for discourse.

My first proper equal friend was also a gamer and a scientist. I learned from him that your interests converge on a focus when you have someone to share and expand on them with. Broadly we both just liked games but because we were friends and played them together we wound up liking and playing a lot of the same games. This further helps interaction as you will be more likely to share more interests with more other people via this sharing and focusing process. Also as you age more and learn more about the world while gaining ever more independence you gain access to greater pools of people who share your more obscure interests.

The main game in my life has been the trading card game Magic the Gathering, or as large portions of my peers would call it “Tragic, the Saddening”, some jokingly, others more seriously. It was one of my older friends that first showed it to me and at first it was just a game much like any other. Unlike the others however I discovered a somewhat small and underground community of players. Basically none of my school peers played Magic and so I had these two separate worlds. Of these worlds the Magic one had some strong appeals and I would periodically plunge myself into it when the other was not so pleasing.

The Magic community is more like a weird family unit than a group of peers. It has a range of ages and people look out for each other and support each other. The local games shop people will all lend each other cards and organize a car pool to go to tournaments. The older people will look out for the younger ones, the experienced players will mentor the newer ones. It is not all happy families but it is far more noticeably a community than anything school or working life ever offered. The main thing about the Magic community is that they all speak Magic and are interested in Magic. This meant I could go to a huge social even full of loads of strangers yet have no anxiety about the required social interactions. I could go to new places and meet new people with guaranteed common interests and I could do so relaxed and as myself. I did not have to act up or become the centre of attention to avoid interaction. I did not need to go over in my head every possible iteration of events that could transpire over the day non-stop beforehand because I knew I would be able to wing it so to speak. Because of the older maturer elements of the community I would frequently be told how to act better rather than simply being ostracised by the group. It so many ways Magic has helped me find my feet in the world. I still tend to relate real life situations to potential in game Magic situations simply because I understand things so much more clearly in those pure logic terms.

Gradually through a process of trial and error as well as seriously taking on board any genuine criticisms of my person from others combined with a diversifying range of types of social interaction I became a more socially acceptable person. By about sixteen I was starting to get a little interest from the ladies and by about eighteen I had managed to stop rubbing people up the wrong way as a matter of course should we not have much in common. I was fairly reasonable in one on one situations from quite young but had been so bad in groups that I was politically very toxic to be attracted to or be friends with. I often felt let down or betrayed by people I liked when they wouldn't back me up in my disputes with others. This was my fault for failing to realize my own confidence in conflict and comfort in being disliked by others was a not something many people shared. I am not sure if it is a result of receiving much hatred and abuse over the years or part of the autism that has made me not care what people think of me if I don't like or respect them. If I actively dislike someone it seems logical to me that their dislike of you is a complement of sorts.

So at eighteen off I went to university because that is what all the people my age that I knew were doing. Armed with my new ability to not offend and given a clean sheet in regards what people thought about me after having gone to school with me for the past twelve years I was fairly adept at making new friends. What I soon discovered was that most of these friends were just so because of civility and circumstance. All we had in common was age and location and for a short while this is enough. I had fun, I learned about people and things and places and I made and lost a lot of friends. None of them were painful or sudden loses but gradual drifting out of each others lives. Shared interests are important in a friendship as they offer activities to pass the time together after all that is to be said at that time has been said. Shared interests are not enough alone, they allow you to be with someone for long periods of time but they don't (presumably obviously to most of you) necessarily make for good friends.

What I found more and more as I lost friends that those that I was keeping were those who shared more that just interests with. They shared the same sorts of values and perspectives as I did and they were those who I would call genuine or true to themselves. I spoke of filters and how I manufactured one to keep all the offensive thoughts from getting out. This may make it seem like I am not a very genuine person however I would contest that this is about as far from the truth as possible. I am very much the same on the outside as on the inside regardless of the level at which my filter is operating. While I filter many things out I am manufacturing nothing new, all of what comes through the filter is real pure unadulterated me. When I am at formal situations and my filter is working at full capacity it is not that I am not myself, I am just an overly restricted and confined me that I do not much enjoy being. I am less able to express myself while the filter is at full.

All people have filters that they use in varying degrees however some people have masks as well. A mask is like a filter except that it also manufactures output that is not true to what the conscious feels. These masks are used for a wide range of things from coping with and or hiding from insecurity to being more effective in certain job roles. Not all masks are bad however none of what I would call my good friends ever wear one when they are with me. I struggle enough with working out what people think, want and feel when they are being honest to me. When people are disguising these things by use of personality masks then I really struggle to know how to interact. I can now recognize many kinds of mask people wear and the reasons they are doing so and although that helps me understand their motives it does not help me interact with them in a way I can generate any affection with.

Although I have been able to curtail many of the annoying things I might say through experience I have been less able to do the same for all of my actions. I am hypersensitive to things, it seems like a ludicrous thing to say because I have absolutely no idea how anyone else feels about their sensory inputs. I am exactly as sensitive to things as the only experience I have of how sensitive one can be towards things! Tapping, dripping, poking, flashing, beeping, ticking, loud, bright all have strong negative connotations for me. It is not uncommon to find that I have buried a ticking clock in a huge pile of clothes to muffle it. I usually wear a hood up while I am out and about and mostly it is to shut out much of the light, noise and visual spread so that I have less to process. Simply going a place I have not been to before I a draining experience as I am hoovering up all these new senses and committing them to memory.

Although they seem like quite different kinds of filter I lack not only the one to stop things coming out of me but also the one to stop things coming in to me. I have an eidetic memory which is sort of like what most people think a photographic memory is. My brain doesn't seem to bother filtering out the irrelevant data from the senses and just saves it all to hard disk. I can fairly vividly picture in my mind, much like a film reel, any place or event I have been to. I can draw reasonably accurate floor plans of buildings I have been in (each room). I cannot glance at a page in a book and then read that page in my head with my eyes closed. What I can do is return to a place in a book for some quote or detail with great ease just based on the shape of the words on the page. I can picture exactly in my mind where the thing I read is located and find it again.

There are some perks to this kind of sensory set up as well as some drawbacks. I don't get lost but wind chimes make me want to do bad things! I am used to living as me and so both perks and drawbacks are just normal to me. The important thing to do is find suitable ways to exploit the perks and to circumvent the drawbacks. Again, finding out I was autistic made me realise that there were some more fundamental differences in my perception of things which allowed me to better use and/or compensate for them. Had I been diagnosed earlier then perhaps I would have been able to start adapting sooner. Perhaps I would not have been mature or self aware enough to use that information wisely any earlier than I got it.

The biggest drawback to taking on all this information is that you fell like you are an old computer with too many programs running. You can freeze up every now and again, you can become intolerably slow at certain tasks. I feel like I am a vast database with huge hard disk storage capacity but only accessible via a cruddy slow old processor. It is very nice to have a great memory, it makes learning all the more rewarding but it is also tedious becoming tired just visiting some place new or being rendered incompetent by something as simple as a beep. Again, I am used to these things and so the thing I struggle most with is explaining this about me to others. It even sounds ridiculous to me when I give the reasons I do or don't want to do something.

I often wonder if my not knowing I was autistic all throughout my childhood and education was actually a great aid in my coping with it. Obviously I do not suffer the more prohibitive aspects of autism strongly which is the main factor in my being able to get along in society autonomously. If I had not been measuring myself against normal people while growing up then I might not have bothered learning many of the interactive tricks that I did. I might have just used my condition as an excuse to act differently and be a more difficult person as a result. I think the exclusion based on being labelled as autistic would have been worse to endure in my school years than simply that of being disliked as an equal. I am sure people would have been nicer to me but it would have been less of a useful training ground for later life. Having both the period of not knowing I was autistic and the period where I now do in my life have had strongly positive effects on my character but it is not the sort of thing you can plan to do. It was a lucky and happy coincidence that it occurred as it did for me and that both experiences have helped me rather than hinder as they easily could.

While I coped fine with school I was almost certainly a hindrance on everyone else, teachers and pupils alike. Several of my teachers went on extended leave due to breakdowns. There is certainly the argument that it would have likely been better for everyone else at school had I been diagnosed younger even if it might then not have been so helpful for me. Sadly this is all far too full of ifs and maybes to be of any real insight or use. Likely the best thing to have done in a utilitarian sense was have some social service autism expert spend a little time with my teachers and myself informing us and preparing us. The problem with that is each case of autism seems to be entirely interwoven with the character of the person, their circumstances and the extent to which they are along the spectrum. As such, the said expert would have to know me at the time to some extent to be able to help anyone out at all.

Even with my greatly increased self understanding it was entering the working world that I found the hardest. Getting autistic people into work so that they can be productive and autonomous members of society is the main objectives of support given to autistic people. It is hard to describe why I have struggled in several lines of work concisely or in an on point way. Typically I do things very well or very badly, very fast or very slow, I don't do middle ground much. I find it hard to do things not my way and I find it even harder to explain why I want to do things my way. I found I was winding up employers much like I wound up teachers despite my slightly increased maturity. Any job I had that did not engage the brain I would find so boring that I would become miserable. Most jobs that did engage the brain required a complete package of skills of which I was missing a chunk. I have done a variety of rather different things and have settled into one of only a handful of things that I could see myself being happy doing. I have been a shelf stacker at a supermarket, a professional card player, a production manager (I am a truly terrible manager and suspect that would be a strong trend among autistic people), a lab worker and now I am a very content dog walker.

There are a lot of things I could do very well in a lot of different avenues of employment. The thing is that in most of those roles I would usually be required to perform tasks I would be shocking at, basic things like not appearing to be a moron on the telephone. In order to utilize my potential in any given industry I would need a great deal of extra support from the employer. I don't know if that would be an economically sound investment in my skills but I should like to think so! There are certainly an increasing number of employers specifically seeking autistic employees so as to take advantage of their unique perspectives and creative problem solving. Socially speaking again I would suggest that the best return on investment would be to encourage employers to take on that extra cost and work with autistic people directly. Certain industries are much more suited to autistic peoples talents such as architecture, computer programming or scientific research. Any social worker helping out during childhood with education and teachers should go on to help out with careers advisor meetings, job applications and interviews in more extreme cases.

While I think we could do specific things like my afore mentioned vague social policies to help society get the most from its autistic people, and they to get the most out of life, I think the most generally helpful thing is information and understanding. It is my close friends understanding my quirks that allows them not to hate me. It was the lack of understanding of employers that made many of my previous jobs so all round unrewarding and it is my own understanding of my differences that has helped me to find a way of living that works for me. I hope this whistle stop tour of the autistic attractions of my life has helped spread some understanding on the subject.