A day in the life of Leo Arthur Capella

That’s the quote I really should remember when I get up out of bed every morning. I either wake because of the blast of an alarm clock or the sound of my fat, black cat Pippin, batting my bedroom door demanding release and food and drink (thankfully, not wine!). Once I’ve got dressed and before going to have my breakfast it’s time to say hello to Elmo, my white and tan Labradoodle… I eat cereal as Radio 4 blares out, then check that I’ve got everything and head out to the car to go for one of my daily one hundred and sixty kilometres – roughly – round trips between the grey pulsing labyrinth that is the University of Essex and my home in Saffron Walden. In my first year, I used to travel the equivalent of London to Glasgow (500 miles) each week; now it’s roughly 200 miles and on weeks when I have union council (as I’m now an officer with the students' union) my journey is 100 miles. This is because I do have a flat on campus as well as living at home. This is fortunate for me as I can still do things on campus while living outside the bubble that is a campus environment. But I’m aware that I’m part of a fortunate few on that one and not part of the unfortunate many. Quite a few people have wanted to get this far but haven’t yet made it.

When I get to the university and there’s limited time before my lectures, I head to a lab. I also check the news from America, Japan and what’s going on within the lives of the other people on facebook – possibly as half the student and three quarters of the autistic population is doing. (Don’t ask me where I get those statistics!). For me, checking my inbox is as natural as a person checking their answer machine when they return home. It helps me keep in touch with what’s going on, sort of, whereas I’m not that great at getting on the phone and talking to people, although I have improved somewhat. With that done, I assume my role as a dutiful student and either do some reading, revision or scuttle to a lecture or seminar.

In the environment of academia I don’t have to let my disability do the talking. Seminars can be tricky: on one hand, I don’t want to scare the living daylights out of the entire class or jolt them into silence, but on the other hand, I do want to push hard. Most of the time though I’m typing away on my laptop taking notes on what my teachers and classmates are saying. In a way the same thing applies with the union. People respect me there, because I’m a capable person on the subject I study: politics, or in my role as a union rep.

I’m still slightly annoyed that I didn’t get the opportunity to go for a first by going wide rather than deep on an international relations exam, but at the same time that hasn’t completely stymied me; I can still aim for a good 2:1, which, if I haven’t cursed myself into failing, I hope I’ll achieve. I’ll also have managed to sort issues out on the union side too – I hope.

Fortunate few
Sitting in council is tough but fun. Sometimes it can be demanding with a heated debate going on about motions to NUS National Conference. In some ways I’m part of the fortunate few. And I don’t like it. I mean I like the feeling that I’ve made something of myself, but I know there are others out there that deserve the shots that I’ve had in life. Without input too, but then again most people are concerned about going to Disneyland. Although, and to be fair, we union representatives can be more invisible in reality than the fictional Harry Potter wearing his invisibility cloak, particularly if we’re going about our daily tasks.

This brings me onto a point about support: I get a lot of help from the university – academically – through the student support office and through my academic mentor. I’ve also been fortunate to be part of a study group for my subject, where I’ve really had fun learning from and discussing various subjects with others.

As I walk along, sit in or do one of my various activities, I’m relieved that I’m not going to be insulted as a “retard”. In fact, the jeer I’m most likely to hear is “Oi, Ginger!” or something about my hair, not my condition! Then again, living in a quiet village in the country means that I can pretty much choose to avoid these insults. Also, I haven’t really received that kind of discrimination in what is a diverse university campus. In a perverse way, I feel fortunate because, unlike other disabilities, Asperger's doesn’t have any real visible, facial or other distinguishing features, save more than a few pockmarks from former spots, destroyed in completely the wrong way! (You don’t even want to guess how!). What it does have, is seemingly weird and wonderful behaviours that can make me look like a mad person and not in the sense of Mad Pride. It’s these behaviours that on one hand irk me, because I fear the aggravation or condescending attitude of some elements of society, yet on the other hand keep me cool, so I can function in society as I try to channel the raging, yet drifting current of my brain.

That’s been a relief and says something about the fact that I’ve had such a great time and manage to make the things I can do count. I know full well that other people, including my friends, also on the autistic spectrum, haven’t always been so fortunate. What I mean is that I’m one of the fortunate people to have made it this far in my degree, not dropped out, and I've held positions within the union. I hope I can make the final transition and go into employment or on to postgraduate study.

Isolation
I remain aware of my own isolation as I occasionally browse the various blogs and forums and that can make me worried – afraid of falling into the same pitfalls – as I go through my seminars, through my lectures, through my council meetings.

Fear used to be a really strong part of my life, some of it necessary. Fear that I’d get an ASBO for failing to control my stream of thoughts or worse, sectioned under the Mental Health Act. Fear of offending or annoying, of getting into an altercation when I really don’t want to: these are the types of niggles that can ruin my day. Fear that I’ve screwed up everything in my life. It’s still a concern but is slowly being replaced by something more positive: a determination not to live out of fear but in hope and wanting to live my life to the full.

Nevertheless, the worries that I have are still around but slowly migrating to the back of my mind. They tend to occur when I’ve had a particularly draining day in terms of social or mental exertion, so I shouldn’t worry. It’s where that fear comes from after all. I didn’t create that neatly placed abyss to fall into, (well not entirely) otherwise I’d be suicidal, which I’m not. Now I just try and put it to the back of my mind and instead, look upwards. My favourite quote is from a samurai. It’s a long winded one so I won’t put it in here but basically it says: do what you need to do, whatever’s going on around you and do it well and I try to do this.

Sheltered
I’m not directly discriminated against that much. Again, that could be because of moving from two sheltered environments, one being my hometown and the being the campus of the University of Essex. Well, I’ve never felt really discriminated against within my classes or lectures. I use the ticket machines at railway stations, (instead of going to the counter) if I’m not feeling too social or had an off moment. However, I do worry about the climate of under and overestimation, particularly as in July, I’ll be leaving the sheltered confines of my life for a gap year - to sort out issues – before going back for postgraduate study. It is then that reality, which has been nibbling at the edges, will really sink its fangs into me, if it hasn’t done so by then.

I’m fortunate in some ways that I live in the UK. I don’t have to stare at billboards with faces of autistic children – staring at aggressively demeaning campaigns that refuse to acknowledge my existence. But I do have to face the fact that despite the various schemes on offer, which is why I’m actively seeking careers advice; jobs are few and far between. I’m also hoping to do a course in Japanese or some other language as I’m not really content with being the underdog in the UK, but also because I’ve a strong interest in what goes on in that part of the world.

For now, my hopes and dreams have to wait, as I have to balance the additional worry about finance such as library fines which I seem to keep on getting hit by – as does half the population – it’s how libraries sustain themselves. This is because I know my number one priority is to get through university, but a bit of help on managing the financial matters would not go amiss and other stuff too such as clothes shopping, which I do on a scratch basis. And on developing and maintaining systems to sustain myself and the communication between various services which is something that is pretty hard for people on the spectrum to do. Otherwise they can collapse rather rapidly to the dismay of all those concerned as well as the frustration of those people who the system is supposed to help.

Contemplating
Having lunch, I either bring something in or grab a sandwich from the university’s various shops or eat some hot food. Alternatively, I eat in my flat either sitting contemplating the mysteries of life or the universe – in the kitchen. The same applies when I’m on campus overnight. I worry about time and like to do some revision. However, socially, things are not so great, though that’s not just the fault of the world around me. I admit I don’t really go and talk with my flatmates which is stupid I know and I’m not always (understatement of the century) first to pick up the phone to call people. As a result things tend to be rather compartmentalised in that I tend to go in to my room and pretty much stay there. I do speak to them when I can get my head together and they seem like nice people. In a way, one of the sad things of my time as an undergraduate at university is that I’ve been landed with really nice or interesting people and haven’t really managed to get to know a lot of them. But the people I have managed to get to know have been interesting and it has been an honour to know and to work with them.

I try and keep calm on the coach and then on the train to the university and back. It’s a relatively long ride so I try and either think about – amongst other stuff – what I’ve learnt, or do a lot of reading. I also try and get some sleep (although if there are people talking around on the bus that’s not always an option) and relax. The bus drivers know that I’m a regular so there is some sort of understanding and I try and be calm. Admittedly, I talk to myself a lot but that’s a way of controlling the current.

When I give information about the fact that I have Asperger's in the odd social situations, it’s more to say 'you’re dealing with someone different' not 'you’re dealing with someone who is hopelessly retarded and has the skills of a perpetual baby'. It’s rather to say you’re dealing with a person who’s skilled in some areas (like politics) and not in other areas like going into clubs, which are still unexplored territory.

Don’t really have problems in dealing with staff on or off campus, apart from eye contact sometimes or a bit of muttering, but that's another matter. By the way, the eye contact or in some cases lack of it, is nothing personal whatsoever. It’s me trying to focus on what needs to be done counting the change, taking my receipt etc. I have to admit, I do make a special effort when it comes to train and bus conductors. A few years ago on the way back from Amsterdam, I handed over my ticket to a Dutch conductor on a train, whilst staring at the picturesque (if you’re a railway fan at least) scenery, as we went to Schipol Airport. My dad told me to look at the conductor because he could have thought that I was a terrorist. I took the look at the conductor part seriously partly because I want to reassure people, but also because that’s a necessary rule for me. I also try to be polite to people and show courtesy. Call it compensation or a trade off, as I may not do one thing, but will always strive to do the other – to show acknowledgement, respect and to underline the fact that I’m no way linked to Al Qaeda or any other extremist organisation.

Social rules
The same goes for other behaviours or social rules. I try and keep within them seventy to ninety percent of the time. If I can make it ninety five percent, then with the social stuff or for that matter, organisational stuff – such as remembering items and so on – then that’s great. But at the same time my priority is to complete the tasks that I really need to complete and observe the rules that I really need to observe. And that may mean I don’t get everything I want to do done. I just do what I do. I may not succeed every day, but if I can succeed on the whole then I’m doing the right thing. That said, there is always room for improvement.

Elmo comes to greet me with his tail, conducting a soundless rondo showing me his toy – either at the end of the day or stint – and my cat will no doubt be upstairs sleeping on my bed or if it’s around 6pm, asking me for one thing, food – with added loving interest. I do try and make the effort around the house or at the flat. After all, even though I commute, I’m still twenty one approaching twenty two and I do have to have a level of pride both in my flat, when I’m there, and my home. I also do some reading and watch some television as I try and cool down from another successful or in some cases tiring time at uni.

Usually, I hit the hay between twenty two hundred hours and midnight each day; I know I should get to sleep earlier, but trying to wind down isn’t easy after a day; sometimes it’s because I need to crank up, to blast through an essay or something else. Sometimes, I command myself to sleep, otherwise I drift off on the net and then go to bed with all my hopes, desires and fears still around and intact. With the day completed I’m one step further on the way to reach what is the top of the mountain my personal ambitions have provided. I’m doing it in spite of, and because of a society that – as one person I met at a National Autistic Society conference put it – “underestimates on one hand and overestimates on another” and I’m not doing it too badly.

Written with thanks to George Schooling, who took some time out of doing a dissertation to give some much needed advice and shine a different set of eyes.

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