Personal Accounts of Being a University Student with HFA/AS

James (diagnosed with Asperger's syndrome)

I am doing a 4-year Computing degree at university, which is proving to be a real struggle now I'm into my final year, with so many demands on me, which of course are added to by the fact I have Asperger's Syndrome.

My experiences of university life have been traumatic to say the least, right from Day 1. But starting from the start, just to give you a background on how I was feeling going into uni ... although being rather different from everyone else in my school classes - always the quiet, shy one who got on quietly with his work while everyone else just messed about - I was relatively happy with that all the same, and just got on with life happy with my own company. I had a phenomenal attitude to work at school - I extremely rarely handed in ANY homework late, and it was always completed to the very best of my ability. This got me quite a reputation among my peers ... never having had a detention, always getting positive feedback from teachers, etc. This became my motivation for continuing to work well and be successful at school - I never wanted to get into trouble AT ALL for ANYTHING, otherwise if I ended up getting just one detention, my friends and classmates would never have let me live it down. So I guess that, despite having to put up with some bullying from some of the more troublesome pupils which did bother me to a point and make me even more reserved, it was a good thing that I was such a "teacher's pet". The bullying was only usually verbal (name-calling and such) and never much more than that, so it could have been worse. I knew at the end of each school day, I could go home and get away from everyone again, back in the comfort of family surroundings, where I knew I was gonna be perfectly safe and relaxed. I had a limited range of interests, rarely socialising outside school hours, but I was happy with that, and enjoyed what few fascinations I had in life. Okay - some were odd, but I knew that, and didn't try to make it too obvious to others - I had that much sense at least! Playing on my computer (an Acorn Electron in those days) was probably my favourite pastime. If I wasn't playing games, I was trying to program them, taking them from computer magazines, and learning the language (BASIC) as I went along. All was "hunky-dory" at this stage really - I had yet to be diagnosed with Asperger's Syndrome - there had not even been any mention of it up to that point - I was just a bit of an eccentric, although shy enough not to make it terribly obvious to the outside world. There was no real sign at all of what was to come in my life in the not-too-distant future.

After doing very well in my GCSEs at school, I moved on smoothly to college. I furthered my knowledge of computing by taking an Advanced GNVQ in Information Technology, and attempted to take advantage of my strong ability in Maths that I had at school by taking the 'A' Level in that. As some of my best friends from school were taking the same courses as me, and some of my other friends were also at the same college as me although doing different courses, my social life remained much the same as before, so that was good. Academically, I continued to do well, although the Maths wasn't so good - the bar really had been raised from GCSE level. It became a sign of things to come at uni. I rather cruised through the computer stuff, but was really flagging in the 'A' Level Maths. I would start avoiding doing any homework in it, knowing there would be little fall-out from it. The ever-increasing lack of structure that was present in college but not present at school became a problem for me. I knew I needed the structure and the threat of punishment (e.g. detentions) to motivate me. Obviously the work I was doing wasn't a whole lot of fun either. Add to that the fact that I only actually knew one of the other people doing the 'A' Level in my group (I had a few more of my friends on the computing course), and that meant the threat of being unable to live down any punishment that WAS given to me was significantly reduced. To cut a long story short, it led to me only getting a D for my Maths. Quite a drop in performance after doing so well all-round at school (I didn't get lower than a B in any subject). I may have got a Distinction in my GNVQ, which enabled me to get into university, but I think it was how the Maths went that was to determine how I would get on academically at uni, where there would be even less structure about each day/week, and even less motivation and willpower evident.

Also during my college years, for no apparent reason, I was starting to lose interest ever so slightly (but still noticeably) in all the things I was interested in outside school/college. Nothing major, but it was certainly there. I thought at that stage that it would be just a temporary thing, and it would pass soon. Not so. So I went onto uni in September 1998. I knew I wasn't ready at that stage to go into the workplace, so I considered it to be the only logical progression from college. I was actually looking forward to the prospect of living in halls of residence, even though I knew I'd miss home at the same time (it was my first prolonged period of time away from home). None of my friends from school or college were coming to the same uni as me, so it really was a case of starting from scratch. Such optimism really surprises me now, looking back, knowing what was to come. But that was how I felt.

So ... Year 1 ... originally, despite making my preference for living in halls clear to the accommodation staff at uni, they were so full that I had to take a place in some hotel lodgings instead. I was quite disappointed, for various reasons, including the fact I was sure I wouldn't like the food they would give out at a hotel. I had been so used to a strict diet of the same old food from Mum all my life that I feared the prospect of having to try new things (a typical AS thing). Just little things like that. However, right at the last minute, I got a phone call to say a place had come up at my first-choice halls. I had to decide on the spot whether or not to take the place, which is a bit harsh, having got into the mindset I was going to be living in a hotel. However I went with my gut feeling and decided to take the available place in the halls. The problem with this, though, was that I was being "dumped" in a flat with other students who had also only received last-minute offers of a place there, so while other students living in those halls were able to specify preferences for the type of people they wanted to live with, smoker/non-smoker, etc., I wasn't, so within just a day or so of moving in there, it became clear they were ALL outgoing, ALL party-animals, and nothing at all like me - certainly not the type of people I wanted to live with anyway. The signs were ominous - within days, after initially approaching me to go out with them, and me rejecting those offers through fear and sheer lack of guts, they started to avoid me, thinking I was avoiding them. I started to fear the prospect of having to go into the shared kitchen and facing them, wondering what they might have been thinking and saying about me behind my back. I'd try and only go in there when the room was empty, or come back from uni really late so they'd either be out socialising or in bed, asleep. I was digging myself into more and more of a hole every day. I was hiding in my room, knowing it was the only place I could go to be safe. Although, having said that, it wasn't even safe in there, but it was the best I could get. Even while in the room, knowing they were all outside it, with loud music playing, drinks being consumed and them having a great time, made me feel more isolated. Occasionally, I would hear comments made about me, always negative, and much as I didn't want to hear them, I couldn't help but listen. Somehow throughout all of this, I was able to maintain some sort of good routine and reasonably good work ethic during that year. It was also the first year I was able to spend on-line regularly, chatting on the Internet, making new friends all around the world, knowing I could show far more confidence in myself with those people than I could in "the real world". It gave me some comfort during a very difficult time, and became easily my most enjoyed interest (it still is now). It was new and fascinating to me - within months, I was even getting girls interested in me over the Net, something that had never really happened in "real-life" ... or if it did, I wasn't mature enough at that time to handle it. It was my way of getting away from the pain of living where I was living, which peaked one night the day before I had to hand in a Maths assignment (yes - believe it or not, in a Computing degree, there was one Maths unit in the first year!). I don't think I'd done any of it until that night, but it wasn't very big, so I wasn't unduly worried. I was used to leaving things till the last minute by then anyway. Unfortunately though, that was the night when all hell broke loose outside my room, and I bore the brunt of it. Presumably intoxicated, all my flat"mates" and their friends proceeded to give me hell, banging on my door constantly, calling me offensive names, sticking all sorts of crap all over my door (including most of the food I was forced to put in a shared fridge all year long). I couldn't cope with that - I doubt anyone could. There was no way I could concentrate on,the assignment I wanted to do that night. Eventually though, things subsided, and I was somehow able to get the assignment done. Great. Except I now needed to get it handed in by 9am the next morning. That meant opening my door, going outside, looking at what state my door was in. Little did I know what was in store. I was shocked and deeply hurt by what I saw, understandably. I can't remember exactly why I didn't get that assignment handed in on-time, but I didn't, and that meant I was automatically only able to get a maximum mark of 40% for it. I didn't want to face anybody, or have to explain the real reason for why it didn't get handed in on-time, it was so embarrassing, so I didn't even hand it in at any time during the two weeks I had to hand it in and get between 0% and 40% for it. So I got nothing at all for it, along with an angry lecturer looking for me (remember I STILL had not been diagnosed with AS, or anything else, so as far as he knew, I was just being lazy). Thankfully I still passed the unit as the second assignment was so easy, and I did very well on it. But in hindsight I dealt with the situation very badly. On that morning I didn't hand that assignment in, I phoned Mum in a blind panic, as I often did - she told me to contact security to deal with the situation. They were able to clean the door of the mess on it (or did they get my flat"mates" to do it? - can't remember), once I'd got what, at one time, was my food off it first, but all they got after that was a warning. I was furious inside, that no more action was taken, but there seemed to be little I could do about it, and I was never gonna let that anger show - it would probably make things even worse. The angry lecturer in question was eventually told what had happened, and said I should have come to him from the start. Of course that's obviously the sensible thing to do, but I wasn't seeing any form of sense that day. Ironically, this is the very same lecturer that one day would help me no end in getting through the remainder of my course (more about that later).

Well that was how my problems in Year 1 peaked. I didn't even have anyone you could call a "close friend" on my course that I could "use" to help me through my difficulties. But I got through the year though, got out of those halls, and went into Year 2 living in a big, shared house with some final-year students, however going into Year 2 I was much worse for wear psychologically. Over the summer, I had been seen by a psychiatrist back home after such a traumatic year socially, and it became apparent that I was clinically depressed, and was then put on anti-depressants. They did very little for me as it turned out, as the very same social difficulties that I had experienced in Year 1 started all over again in Year 2. I was even making more of an effort this time around, but still not enough, and I became isolated from my housemates there too. More talking about me behind my back, etc. This time, it really did take a toll on my academic work. I couldn't even bring myself to get out of bed most days and attend lectures - all I would get up for was the occasional meal, and to come to uni to play on the Net. And I'd only do that when I knew no-one else was in, so I'd be "safe". It was becoming clear within just a few weeks that I was already so far behind, I could not catch up. So despite Mum having a talk with one of the guys I was living with, explaining my situation to try and ease it for me ... and despite my Course Tutor organising a meeting with me and my parents to assess what to do next ... it was decided I was in such a bad state of mind, I'd have to pull out of the year. I always fully intended to try again the following year though, in a better frame of mind, and in more suitable accommodation. But for the time being, that was it. I then had between November 1999 and September 2000 to sort my head out, get help and be ready to return to uni. But while I was without a diagnosis for AS, any help I got was useless: group sessions for assertiveness, general depression, etc. These were for comparatively "normal" people, and I just wasn't contributing to the sessions at all, and they weren't helping me at all. There didn't even seem to be many people of my age there - just middle-aged workers mainly. There was more to my problems than just general stress or just shyness on its own. My mum even brought up the possibility with my psychiatrist that I might have Asperger's Syndrome, but significantly and clearly very wrongly, he just dismissed it out-of-hand. What a mistake that was, and it denied me any useful support throughout that whole year out, and throughout the second attempt at my second year. So I got very little at all out of that, changing anti-depressants as my mood wasn't improving, then changing again for the same reason, and eventually settling on the satisfactory reboxetine (which I'm still on now, they've done such a good job on me).

Anyway, Year 2 came along for a second time - now I was about to go into a small, family-run guest house with only two other students living in. They were mature students too, meaning they would be more suited to my personality and lifestyle, not going out all the time, and being much less extroverted. I settled in there far better than I had done in either of my previous two attempts. Okay - there were one or two problems at times, but nothing major, and they were overcome easily enough. The difference was, of course, the owners of the place knew all about me, having had previous visits from Mum and I, so they were ready for me and everything about me. They even tried to modify what food they gave me, to try and suit my tastes. Uni work went better, I actually attended my lectures, and I was generally a happier chappy. Although despite a whole new year group for me to become familiar with, I didn't really make any new friends with that lot either. And I wasn't getting any additional academic support at this point, but as things outside uni were my primary concern, this didn't bother me too much. Okay - I was still struggling with motivation, as I had been in college with my Maths and in Year 1 at uni, but at least I was surviving. There was structure to my days at the guest house - 8:00am breakfasts, 6:00pm evening meals - I knew exactly when I had to do things, which was very important. Unfortunately though, I failed the coursework element of two units, meaning I had to resubmit two more over the summer that year AND pass them (i.e. get at least 40%). The big problem with this though was that I'd had a girlfriend on-line for the previous two years (told you it was going well, and having a girlfriend wouldn't normally be a problem!) and I had booked flights over to America where she lived so that we could meet up in the flesh for the very first time and live with each other for the summer. This was incredibly exciting for me, and there was no way I was gonna cancel it for anything - this was important to me as a person, and I had to do it. So I did it - we got on great - she already knew everything about me from our on-line conversations, so I could fully relax in her company. It was just other things about my time over there that led to me regrettably having to leave after about six weeks rather than the ten weeks I had planned to spend there - homesickness, not getting on with her parents that well (as they didn't understand me like my g/f did), etc. But at least that gave me the advantage that I could concentrate on the extra assignments that had actually been set while I was away. I've never been able to do any uni work at home though - far too many distractions. So I had to force myself to come back to uni, even though it was the summer break, and live in some on-campus accommodation until the assignments were done. Three months prior to this, after getting nowhere fast with the mental health unit back home, it was organised by the counsellor that I'd been seeing weekly at uni throughout that particular year that I should see the mental health unit near there instead, so that they could assess me. Of course Mum was still suspicious that I had AS, so she and I wanted a second opinion, rightly not trusting my psychiatrist back home. Within just one hour or so of two people there seeing me, they had decided that I had a fairly mild form of Asperger's Syndrome. Quite incredible - we were furious at my original psychiatrist for not noticing this after so many visits, those visits starting two years prior to my eventual diagnosis (which was in May 2001 if you've lost track), and needless to say he was no longer my psychiatrist after that. Going back to those extra assignments, the diagnosis meant I could get extra support and understanding when it came to my attempts to get them finished and out of the way. They knew, at last, how apprehensive I was to ask lecturers for help with work - I would NEVER ask unless they came to me first. But this time, they made a considered effort to see me regularly - often daily - so that I kept on top of things. It was great, and even my levels of concentration and motivation were up on what they had been. I, at last, had structure back in my academic work again, being checked on, having my work organised for me. And remember that "angry lecturer" after my failure to hand in that Maths assignment? Well I can confidently say to you that he practically became my own Personal Tutor during the time I was doing those summer assignments. He was great - really wanted to understand my situation and empathise. Quite a contrast to when I'd failed that Maths assignment. Even though, because of my six weeks in America, I was blatantly unable to finish those assignments by the standard deadline of August 31st, 2001, he was able to say to the exam board that I required an extra month to complete them. They knew little about AS, so weren't really in any position to argue, so his confidence in me to complete my work paid off, and I got that month's extension. :) Once that was in place, I completed the year and passed. :) There were a few other students living in the accommodation I was in briefly, also doing summer work at uni, and out of all three experiences of living with students up to that point, this was, quite annoyingly, the best of them all. Despite my problems socialising, I felt surprisingly comfortable in their company, particularly one of the girls there, who I really quite fancied. *grin* It was a real shame I could only stay with them for a month or so - if I'd lived with them in my first year, I think my whole university experience would have been much more positive.

Anyway, next up was my third year ... a year in industry, where we were to spend at least 9 months doing work "appropriate to the course". Again, my holiday in America caused no end of problems with this, as most companies seemed to want students to start their placement in July, almost straight after the end of Year 2, so that it meant they could have placement students like me all year round, for 12 months, without a break. Of course I was away in July, so every time during the second year that I came across a company that wanted its placement students to start in July, however good the work was, I knew I'd have to turn it down straight away if they weren't prepared to be flexible. This left my options very restricted indeed. As it turned out of course, I had these two extra assignments to do over the summer anyway, so it was just as well I didn't take up a placement starting in the summer. But it meant there was very little on offer for me by the time I was free to start my placement. I spent months doing very little with myself, waiting for a decent placement opportunity to come up. Even with those I could apply for, I couldn't get through the interviews (most didn't know I had AS for a start, and anyone with AS who has looked for a job will know just how many seem to require "good communicators", which I'm afraid we certainly aren't). And it wasn't until February before it was decided it would be a good idea to take up a placement opportunity AND to tell them about my AS, hoping they wouldn't be prejudiced in any way (it probably wouldn't be allowed anyway). There were 2 jobs available between 3 students, working on the new version of an organisation's web site. As it turned out, I cruised through the interview and got one of the jobs at long last, and they even said they were wondering what was so different about me that I needed them to know about my Asperger's Syndrome in the first place! *lol* Apparently I was so good in my interview (albeit a bit quiet) that they would never have questioned me! So that made a refreshing change from my recent past, for sure. :) The placement was a generally good experience. I was living in comfortable surroundings again while on placement, with a single mother and her 7-year-old daughter. A family atmosphere (but obviously not MY family) that really suited me. (I left the guest house as I still wasn't quite as happy as I thought I could be somewhere else.) The work I was doing was pretty easy, which was nice in the short-term, but not very beneficial in terms of a learning experience. But I guess it was nice to be accepted into the workplace with mature people, who weren't gonna say nasty things behind my back if I wasn't out with them all the time. Okay - some of them were told about my AS beforehand, so they knew what to expect, but even those that weren't were pretty cool towards me. So that made a really refreshing change. :) I was only there for 3 months though, nowhere near the 9 months required, and as I couldn't find anything else once the placement finished in May, I'll now have to either accept a normal "full-time" degree, without the placement in the middle representing the experience that most employers like to see, or I attach 6 months of work in a relevant job onto the end, when I've done this final year.

But now I am in my final year, and now that my brother has finished his first year at the same university, he's moved out of halls, and we've decided to share a flat together in the middle of town, which is pretty much the ultimate in "comfortability" for me, having lived with him all my life back home. It works pretty well generally. Having had my diagnosis for a full year now, there is plenty of academic support in place for me, that wasn't there in previous years. Theoretically, this should mean it's an easier year for me to get through, but I'm still finding it a struggle in practice! Maybe having the support puts more pressure on me to succeed this year, knowing I'm expected to get through it without too many difficulties. But the work is obviously harder this year too, being the final year, and it includes a big individual project that lasts all year, where the structure is entirely up to us to decide upon. There are no timetabled sessions for this project, so it all has to be done in our own time. That's something I'm struggling to grasp, especially as there are no less than 4 other units I'm having to study simultaneously. *sigh* But as far as my academic support is concerned, I have been assigned two people from the Additional Learning Needs department to see me on a weekly basis, helping me to structure my work effectively among other things. I have also received extra library privileges (e.g. longer book loan times), the possibility of additional exam time (although that is yet to be discussed in any great detail), and the biggie is the provision of a laptop computer for my flat in the middle of town! As my accommodation is a fair distance from either of the two uni campuses that have computers, to allow me more time to get work done when I'm living in the flat I'm hoping to get this laptop (with impressive peripherals too!), but my Local Education Authority are kicking up a bit of a fuss at the moment, wanting to know why I really need it, even though I've already been fully assessed by an accredited assessment centre. *sigh* Hopefully I'll have it soon, so I can actually make some use of it before Christmas! And the angry-lecturer-turned-Personal-Tutor-type-person is still proving a real help, more specifically with the course than anything general.

Well it's been a rocky ride for me, but I think things are slowly improving now that I've been diagnosed with AS and now people are recognising it. It's been especially useful this year that universities in the UK have had to start implementing the Disability Discrimination Act since September, as it's meant I've had the law on my side since returning to uni this time around. :)

Just a few general things to finish: I have been, and still am, and will probably continue to be, VERY pedantic about things - I'm growing to learn not to be so annoying towards people about such pointless things though, but even so, I'm still more pedantic than most. I have various strange obsessions - kinda like OCD-type obsessions, but I had real problems with that about 10 years ago - now they're not so bad. I've fought through most of them, and don't generate many new obsessions, and the only ones that are left are those I started when it was at its worst. Still takes ages for me to shave and shower for example, which can cause problems. Also, I can be remarkably tactless with people - it seems so obvious in hindsight whenever I am, but I never notice it beforehand - not until I've had the bad reaction. Often hints I've been tactless just pass me by and people have to spell out what I've done wrong. It makes me look heartless, insensitive and/or rude at times, but it's just a basic lack of subtlety and common sense really. Not too much I can do about that except try and learn from my mistakes ... and I have made some really big ones in my time.

I'm currently on two tablets a day of the anti-depressant: reboxetine, but I'm still finding my range of interests continues to decline, or at least if it's not declining, my enjoyment of them seems to reduce all the time. Something other than AS I think is really not right in my brain. I mean I used to show AS traits in my childhood, but at least I still enjoyed my life and my own company then. Now I just crave to be accepted, even though I still tend to avoid most social situations. I also crave a girlfriend, as after returning from America in late-July 2001, having to get used to the long distance between us again was just too much to cope with, so we mutually decided to split. Of course that means I'm now seriously missing what I got from that two-year relationship, and as well as wanting more friends, I hate being single again too. I just find myself wishing I was more like everyone else, whereas I used to be happy with the way I was as a kid. It seems since I've come to uni, my whole outlook on life has changed - if I knew back in 1998 what was coming to me when I started uni, there is no doubt I would never have come, and I'd have gone for some sort of work instead. Coming to uni has done me no end of psychological damage, I think. And although most sufferers will probably have had more favourable experiences than me, I personally wouldn't recommend university to anyone with AS. Or at least I'd make sure everyone who matters at uni (mainly staff) are aware of your need for extra help through life there. Certainly don't go without a diagnosis like I did - you'll feel isolated within minutes probably. The only reason I'm still at uni now is just to finish the job, seeing as I've come this far. I can't exactly say I'm enjoying the experience any more.

October 2002

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