Not all Autistic People like Computers

[Image Description: a laptop sitting in front of a desktop monitor, both displaying a webpage titled “World of Bees”]

It’s 2014. I’ve just started studying Mathematics at university. I’m interested in the statistics route; I’ve always been fascinated by politics and even though I decided to choose maths on shaky grounds of “I should study a STEM subject so I get a job”, encouraged by teachers, I want to lean towards politics as much as possible.

In my second semester, I get to take a statistics module. I’m excited. I go to lectures, I do my homework, we’re told to go to the computer lab to start work on a project. We are introduced to R. I don’t like R. It doesn’t make sense to me, I can’t get the computer to do what I want it to. In another module, we’re learning Python. I can’t make it work either. I panic, I cry as the deadline approaches and I’ve done nothing. I get poor marks on both computer projects.

It’s 2016, I go to a careers adviser. I say I’m worried about finding employment, I’m not good at interviews, I can’t work while I’m at uni because it would lead to severe burnout. I only have so much energy thanks to being autistic, I say. “Oh, you’re autistic? There are these great employment opportunities for autistic people, you don’t need to interview, just show them how good you are with computers.”

I think back. It’s 2008, I’ve just started secondary school. We’re learning photoshop in art class. I still have serious anger management issues. I can’t do it, it’s frustrating. My entire identity is built on getting good grades as I have no friends. I make another mistake. I pick up the keyboard, scream and throw it on the floor, storming out of the room. It dangles from its wire, still attached to the computer.

I go on the internet and open google. “Autism employment UK” I search. The results load. Coding, coding, coding, coding, coding. I have a headache from staring at the screen. It’s too bright, too white, too pixelated. I don’t like computers. They don’t like me. I read about Luddites and angrily think that they had the right idea. This world is not for me.

I put the laptop away and turn on the TV. “Autistic savant creates robot,” reads the headline. I can hear the presenter “… autistic people may lack social skills, but they have excellent computer skills. This young boy, aged only 9, has managed to…”

I turn off the TV. I look in the mirror and ask myself, what am I? I’m not neurotypical, I’ve never managed to survive in that society without severe masking until I’m exhausted and feel sick. But computers hate me so how can I be autistic? There’s no place for me, not anywhere. I’m an aberration, I shouldn’t exist, there is no place for me in this world.

Not all autistic people are good with computers. Not all autistic people know how to code. Not all autistic people like or want to be good with computers. We exist, we are here despite what the media and everyone else says. Stop assuming we are all computer savants. It hurts people.

Assumed Dependence & Going Backwards

Today I’m going to talk about what many would consider one of my favourite topics: independence. No, not for Scotland. Not even for Catalonia. This is about the independence of individuals, namely disabled ones.

There was an incident, probably over five years ago now, when I was in high school that proved beyond a doubt all my criticisms of my high school were warranted. I was speaking to my pupil support teacher (equivalent of a guidance counsellor for the Americans out there). I made what I felt was a throwaway comment about going to the University of Edinburgh open day, and he replied:

“Would that not be a waste of time? Your parents and I have discussed it, and we all agreed that it would be best for you to live at home throughout university, and attend Glasgow.”

Perhaps this is the moment that inspired all the times my fictional characters in writing freeze as their blood runs cold. Because that is certainly how I felt in that moment.

I had no desire to remain living at home during university. In fact, if anything, I had an overwhelming desire to not do that. But in 2013 I was not nearly as confident voicing my opinion as now. So, I let out something unintelligible and ran off down the corridor to hide under the stairs, shaking. A common occurrence throughout high school.

That evening, when I went home, I confronted my parents about them discussing my future with the teachers behind my back. My mother’s response? They hadn’t. The teacher had made it up. A blatant lie to make it seem like he had support when he clearly didn’t. And that whole day of being terrified I’d end up trapped at home forever was for nothing.

Suffice to say, I never trusted another word a teacher in that school said. I was a kid who inherently trusted authority. I am an adult who inherently distrusts authority because of what all my experiences taught me.

In the end, I defied the teachers to attend the University of St Andrews, approximately 80 miles and 3 hours on public transport (if you’re lucky) from my parent’s house. I graduated this year in June with a 2:1. I lived two years in student accommodation, and two years living with actual friends in an actual house. So, take that, Williamwood High School, with a great reputation but where I had a terrible experience.

And now? Yeah, I failed at getting a job, decided I didn’t want to settle for some well-paid but extremely boring job in banking, and now I’m back living with my parents. And despite all my remarkable achievements, that one fact makes it feel like I’ve failed in life. Because all that independence I gained? It’s been snatched away once more.

My mother feels like she can just walk into my room unannounced, harass me to get up, insists on me informing them in advance whenever I plan to go out and frowns if I get back late. I’m doing an online TEFL course so I can go abroad and teach English, but it’s taking even longer cause my father keeps inviting men to do work on the house and chasing me out (and I can’t even go where I want, always with my mother).

I feel like I have gone back in time, and I feel so incredibly trapped in my current situation. It feels sometimes like all my attempts to get out of here are being sabotaged, and just sitting in my room right now, I feel the need to look over my shoulder and check my parents haven’t wandered in despite the closed door.

There are these assumptions that autistic and/or otherwise disabled people are incapable of being independent, and while this is the case for some and that’s okay, treating those who can and want to be independent as if they are unable, and sabotaging any attempts by them to achieve that, is not okay.

I value my own independence highly. For me, all attempts to restrict this feel like an attack. I gained something remarkable over the past four years, in spite of what everyone told me and what I was taught to believe. To lose that again is devastating. I only hope that I can get out of here soon, and in the meantime, perhaps I should invest in a lock for my bedroom door.

At the end of it all

[Image: group of St Andrews University students wearing red gowns walking past the ruins of the cathedral.]

I have finished university. For so much of my time there, I never thought I would say those words. It has been an incredibly complicated time, leaving me with memories both brilliant and terrible, and more mental health problems than when I went into it, though a scarily large number of students would likely say the same thing.

As someone who had never struggled academically at school, I had huge problems adjusting, and found that my autism made it much harder than I thought it would be. Trying to adjust to all the change was hard, and it didn’t help that there was far less academic support than in my school.

But nevertheless, I made it out the other end. Even with a few moments in there when I never thought I would. University is hard, and when you’re as emotionally fragile as I am, it can legitimately be dangerous. The way students are pressured these days, both academically and financially, is completely awful.

I have been absent from writing for a while due to exams, and I am just so glad they’re over now. I don’t have my results yet, I won’t get them until the 12th June, but I’m pretty sure I passed everything (this time). Now all I need to do is figure out what to do with the rest of my life.

Anyone know of any jobs?

There’s a mix of emotions at this time. One is sheer relief that I’m done, but there’s a lot more fear of what’s next than I expected. I have absolutely no idea what I want to do, and despite how badly most of my undergraduate career went, I’m considering doing a postgraduate in 2019.

For all my previous life stage transitions, I’ve had a clear idea of where I wanted to go next. Things have never gone according to plan, but at least I had a plan back then. This time, there’s nothing known in the future. I have no idea where I’m going, and I have even less idea of where I want to go.

For a while I considered taking a gap year and traveling, then I realised that I would probably struggle to cope with that, given the uncertainties involved, and the fact that most affordable accommodation is also really noisy. Gap years are not the most autistic-friendly activity.

I might still give it a try, but that’s pretty much where I’m at right now. Confused, uncertain, and with no idea of where I’m going from here.

It’s still better than the way I felt at university.

We Must Support Clara Ponsatí from Political Persecution

A European Arrest Warrant was issued on Friday for Clara Ponsati, a Professor at the University of St Andrews. As a student at this institution, I am horrified that one of our professors is being persecuted for her political affiliations.

Professor Ponsati and other Catalan ministers face charges in Spain including rebellion and sedition for their role in holding an independence referendum in Catalonia in October 2017, and subsequently declaring independence. These charges are politically motivated and are an attack on freedom and democracy by the Spanish government.

Clara Ponsati was Education Minister in the Catalan government at the time of the referendum when they declared independence from Spain. Following this, she and five other ministers, including Catalan President Carles Puigdemont, fled Spain for Belgium. Many others who stayed behind were imprisoned.

It is shocking and disheartening that there are political prisoners in an EU country in the present day. If the UK extradites Prof. Ponsati, and Germany extradites President Puigdemont, they will be denying the Catalan people the right to express themselves and determine their own fate. The right to hold a referendum is one we have taken for granted in Scotland – in Catalonia, people are being prosecuted for this same action.

The Catalan government was elected with a mandate to hold a referendum on independence. These democratically elected ministers, acting on this mandate, are now facing up to 30 years imprisonment for acting on their political beliefs while representing the people of Catalonia.

The treatment of supporters of Catalan independence by Spain has been horrific and not what is expected from a democratic country. From police brutality on the streets, to the arrest of members of the democratically elected Catalan government, the treatment of the Catalan people has been completely unacceptable.

The independence of the Spanish judiciary on this matter cannot be assured, and if extradited, Prof. Ponsati and the others face inhumane treatment in violation of their human rights. Due to this, the UK judiciary are within legal grounds to reject the extradition request. I sincerely hope this happens.

It is for these reasons that other students at the University of St Andrews and I are organising a demo in support of Professor Ponsati on Monday 2nd April. If you would like to get involved, please like our Facebook page here: https://www.facebook.com/StASupportClaraPonsati/ to stay updated on ways to support our professor!

This article was originally published on the blog of SNP Students.

Why I Support Striking University Staff

As a student at the University of St Andrews, I am supporting the striking university staff in the dispute over the Universities Superannuation Scheme (USS). UUK announced plans to change the pension scheme from one where university staff have a guaranteed retirement income to one where pensions are dependent upon the stock market. In the worst case, this could lead to a reduction in pension income of £10,000 a year. In response, the University and College Union (UCU) announced 14 days of strike action.

A deal was offered to end the strikes on the 12th March, which would have resulted in staff contributing much more of their current income towards the pension scheme for no further benefits. UUK claims the scheme has a deficit; however, this is disputed and some universities, mine included, have been claiming that as fact. Regardless of whether there is a deficit or not, cutting pensions is not the way to solve the problem. The UCU rejected the detail, and a second wave of strike action is due to happen in the future.

While the pensions of university staff are under attack, vice chancellors and equivalent continue to be paid large sums of money, much more than is necessary for anyone to live. Meanwhile, these are the people who want to cut the pensions of staff with much smaller salaries. This kind of pay gap is synonymous with capitalism, an economic system which necessitates inequality.

As a final year student, this could not come at a worse time, as by their nature, the strikes are disrupting students’ education. This is not the fault of those striking, it is the fault of employers for proposing this outrageous scheme and failing to present an acceptable deal at negotiations. University staff have a difficult job, one in which the pay is comparably less to other professions requiring the same skill level. Staff deserve to feel security about their retirement, but under this scheme, that security is eliminated.

As students, we should be supporting our lecturers and the other staff whose pensions are at risk. Some current students wish to continue with academia, and hope to work at a university one day, and these proposals may discourage some from doing so. Those who choose academia do so in the knowledge that they are passing up far more lucrative careers. At the moment, however, they have the promise of a decent pension in retirement.

If these proposals were to go ahead, that promise would not exist. There would be no security, no guaranteed income and no guaranteed retirement plan. It is highly likely then, in that case, that many people would be discouraged from entering academia. Other careers requiring similar education tend to have better pay and are often less stressful. As current students deciding on our future careers, this is very important.

At the end of the day, nobody wants to have to strike. They lose pay for the days not working, and university staff do care greatly about students’ education – they chose that career, after all. But in this case, industrial action is necessary. It is disruptive by its nature, designed to show employers how much they need their employees. It shows employers that their proposal is completely unacceptable, that it is over a line that cannot be crossed without action being taken.

I call on other students to join me in taking action to support the strike. If you are unsure how to do so, the UCU has a guide to students supporting the action. UUK needs to understand that cutting pensions is completely unacceptable, and hardworking staff deserve security in their retirement. I hope a deal that does not leave staff worse off, either just now or in the future can be reached.

Oops I Burnt Out Again

In August, I wrote a post about how little time I have due to the large number of commitments I always make. And I think the fact that nobody has realised quite how unreliable I am, is testament to the masking skills I perfected in the latter years of secondary school. Because I’ve been almost burnt out for years.

It’s the second day of term today, and I’ve already almost passed out, took an unscheduled nap and feel thoroughly fed up. While I don’t sign up to do stuff I don’t enjoy (aside from the degree itself), that does not negate how tired it all makes me. I ought to quit something, but I almost always regret it when I do.

I don’t hate my degree subject, for all I say. But while I was brilliant at maths at school, I’ve struggled at university. It’s affected my self-esteem, and however interesting I might find the subject, I struggle to enjoy it just by virtue of disappointment in my grades. And then I feel guilty for not enjoying it as my lecturers are lovely and I don’t want to let them down.

By the end of last semester, I was struggling to survive. Between seven committees, university, and my untreated depression, things kept going from bad to worse. In December, I saw a doctor and started on antidepressants. Combined with a month-long holiday from university, I managed to relax and things got better.

Now I’m back, and the cycle is starting again. Throughout the semester, I teeter on the edge of burnout, pushing myself to the edge and over. I frequently don’t know how bad it is until it’s too late. I want to break this cycle but I don’t know how to do so without quitting what I like (such as the Doctor Who society) to focus on what I hate (like job applications).

Since my depression started, I’ve reached burnout earlier and earlier. I’m hoping with treatment for that, I can extend the time before I reach it and get to the end of the semester. There’s no guarantees though. It’s my final semester, and I’m hoping so much that things will get better once I’m away from this place.

I think I try and keep myself busy to distract myself from all the bad memories here. At the end of my third year (this is my fourth), a bunch of stuff happened and while I’m here I am constantly reminded of all my mistakes. There has been a lot of good at university too, but I just want it to be over now.

Which brings me to my main point. I will get everything for all my committees done, and usually on time. But at the expense of my studies. I almost never study enough, because I’m so exhausted with all the other stuff. Perhaps it would be different if I was studying something else, but perhaps it would not.

I am stuck in this cycle of pushing myself, burnout, rest, push, burnout, rest. I don’t think it will ever stop. I don’t think it can stop, without sacrificing all my interests. And I think the most challenging barrier to ending the cycle is that I’m not quite sure I want to.

The Fluidity of Obsession – Autism & University 3

This is the third and final of three posts I will be writing about my experiences at university as an autistic undergraduate student. These experiences are my own, and do not necessarily reflect those of other autistic students. I study mathematics in Scotland, other courses & countries would vary greatly. You can read the first post about academic structure here and the second about noisy student culture here.

Regardless of your preferred language to describe it; obsessions, special interests, or intense fixations are something that many autistic people have. Many autistic people have the ability to focus very intently on a subject for extended periods of time. These interests can last for anything from a few weeks to a lifetime. In the recent documentary Aspergers & Me, Chris Packham demonstrates a lifelong intense interest in animals.

And how lucky he is, I think to myself as I sit in the university library studying for a degree in a subject my interest in faded long ago. I do not have a single lifelong interest. My obsessions are far more fleeting. I have little passion left for mathematics, my interests have long since moved on to Star Trek and politics and autism. If I had to choose a degree subject now? Probably psychology, maybe ecology, but certainly not mathematics.

My special interests generally last for a month, and become intense and all-consuming before they fade only to quickly be replaced by another. In reverse order from now to back in primary school, I can list politics, autism, Star Trek, Doctor Who, politics again, a book series called Gallagher Girls, vampires, the Titanic, feminism, writing fiction. I have missed some things off the list, so it’s not too long. Politics is the only thing on the list that has recurred.

So what does this have to do with university? For those who have a lifelong interest, it’s a very positive situation. They can do a degree in that subject, follow a career path related to it, and become very successful due to their intense focus on their subject. Provided, of course, that it’s something ‘useful’ in a capitalist society like zoology or mathematics, and not something like Star Trek.

For those whose interests are fleeting and temporary? A recipe for disaster. I will talk about my own experience as someone who has fluid special interests and is studying a degree I lost interest in a long time ago.

When I chose which subject I wished to study at university, I was 17. It was 2013, a year before the Scottish independence referendum, and I was naturally very interested in it. For the first half of 2013, I wanted to study politics and French at university, the latter because I wanted to learn a lot of languages, and I had the top mark in my year in 2012 in the subject. That summer, I attended a summer school at Oxford University for state school pupils, to study French for a week. I didn’t like it. It was so hard, it was much more like English with the analysis of texts and very little language learning. I decided that academically speaking, languages were not for me.

The reason I decided against politics was more complicated. I cannot trust my own memory as I have a tendency to lie to myself, however I will explain to the best of my ability my reasoning. My experiences at Oxford told me one thing: a subject at university will be nothing like at school. I decided that I didn’t particularly want to read the large books my mother, who did study politics, told me I’d have to, and that studying it at university would probably put me off the subject entirely as I’d have to write academic essays on the areas of politics that didn’t interest me. I believe this was accurate, I do not regret my decision to not study politics – it is very likely that doing a degree in it would have put me off the subject entirely.

So I chose mathematics. If I remember correctly, my reasoning for this was that I was very good at it in school, it is a subject with clear cut right and wrong answers, and little ambiguity. I also wouldn’t have to write essays – while I enjoy writing in my own time, usually the minute it became compulsory I no longer wished to do it. And it is a subject with good career prospects, much more than politics. You will notice that mathematics does not appear on the list of interests above. It’s absence is accurate – it was never on the list. My reasons for choosing it are solely those listed above. There was no passion.

I have looked back over my personal statement from my application to university, and while it’s much better written than I remember, I detect little truth in there beyond the factual statements of what I’ve done. I exaggerated my passion, but while most of it is slightly inaccurate there is only one outright lie:

“Overall, my interest in mathematics has existed throughout my school career, however as I have had more and more opportunities to use mathematics outside of the classroom, my fascination with numbers and logic has only grown.”

There wasn’t any growth of passion. Perhaps I convinced myself there was, after all I was a young seventeen year old being told I needed to decide what I was going to do with the rest of my life. I didn’t know what I wanted to do, so I convinced myself I wanted to do mathematics. It’s a coping mechanism I probably still use, though it’s only recognisable in hindsight.

As for it existing throughout my school career? I guess my 17 year old self had a penchant for editing history. I can prove that is not true – in a diary entry from 2011 I distinctly state that I hate maths. I decided to study a subject I had no passion for. It was always going to end badly.

I, like many other autistic people, do have the ability to intensely focus on one topic for extended periods of time. I do not, however, possess the ability to choose the topic. Obsessions choose me, they creep up unexpectedly and overthrow their predecessor and then they’re just there. I watched 700 hours of Star Trek in a little over a year. I campaigned on people’s doorsteps for a Yes vote in a referendum – making eye contact all the time, long before I have the confidence I do now – because that’s what my interest was at the time. I cannot create or destroy obsessions any more than I could energy.

I think that’s where I went wrong at university. I chose my degree subject, I did not let an interest find me. In my defence, I was pressured into choosing before I was ready. My parents would never have let me take a gap year, and my teachers didn’t want me to deviate from the path they had laid out for me. I had little choice but to follow, but now I’ve left them behind, I’m lost, and I have no way back.

My advice for any autistic people (or people of any neurology, really) considering going to university – choose your subject wisely. If you do not have the requisite passion, you won’t do well, and you won’t enjoy it. If you have a special interest in something other than your degree subject, it will consume time and prevent studying from taking place. If you know what you want to do, really know, then I wish you best of luck and I’m sure you’ll do brilliantly. But if you are in any way uncertain, please, please take the time to think about it.

It is better to wait, and delay the future for a year or two, than to set off on a life path you will come to regret. I don’t believe in certainty, the future isn’t fully in anyone’s control and the unexpected can happen. But if someone asks you how certain you are that you want to study a certain subject, if your answer is anything under 90% please stop and think. Your future self may well thank you one day.

Special interests can be hugely helpful in the academic and career choices of autistic people. If an autistic person can study their interest, or get a job related to it then that is a wonderful thing and will help them to thrive. We should be encouraging people to use their interests, especially as it’s probably more likely to make one happy than doing something they have no passion for. On the contrary, making choices to do something one has no passion for can be detrimental to one’s happiness and success.

We need to stop putting pressure on young people to make life decisions to a deadline. If I had waited a year before attending university, I would be much happier now and likely more successful. The pressure young people are put under to follow a certain path can be very damaging. We need to start accepting there are alternative pathways, and not everything needs to be done exactly by the book. Only then can we have a society where everyone lives up to their potential.

At Least It’s Not A Negative Number

This will be the last weekly Thursday post. I will be switching to Sundays after this as I won’t have time to write on Thursdays once university starts.

I have a terrible habit of pushing myself beyond my limits. Since I will do far more than I have the energy for and eventually reach autistic burnout every few months. And I can’t stop it – especially since most of me doesn’t want to. There’s nothing I want to give up that I actually can. The list of things I have to do each week, added to the things I want to provides me with so little time left over. As an autistic person, this can cause me so many problems, including anxiety and stress.

Much time is taken up by things I must do as an adult, as is the case in most people’s lives. Things such as sleeping, cooking, eating and cleaning take up so many hours of each day. And while (two of) these things can be pleasant, they take time and often aren’t as efficiently planned as I’d like. In my busier weeks, sleep is often neglected which contributes to my lack of energy by the end of them. I also need to go food shopping at least once a week – something made even more difficult as I don’t have a car and have to carry the heavy bags back walking. These things must be done if I wish to survive, but they also drain so much time from my schedule.

The other big ‘must’ is university work. While theoretically I chose to go to university and am studying something I like, in practice the very addition of the word ‘must’ makes my brain categorise it as a chore – even the bits I should enjoy. As my main activity, university naturally takes up about 40 hours a week – or should. A huge part of my problems with keeping to schedule and not running out of time is procrastination. When I’m supposed to be studying I’ll be watching Netflix or playing games online. These are things I have zero time for but I do anyway because they’re enjoyable. In an ideal world, I’d have time for them, but this world is far from ideal.

Something that is very much optional, but also something I cannot bring myself to give up is committee work. I’m currently on four committees, and by the time I go to bed tonight I expect to be on another. I care deeply about every single one and I don’t want to quit. Some I’m on because they’re fun, some because I think they can help me make a difference. The Doctor Who, Sherlock and Science Fiction & Fantasy societies have all provided me with better friends than I ever thought I’d have and a place to go and have fun around other humans every week. I want to contribute to each of them and be a bigger part.

The fourth is the St Andrews University Students for Independence (STAUSFI) society. The fifth one I might be joining tonight is the the Young Scots for Independence Mid-Scotland and Fife Regional Association. Provided I win the election, of course. Politics is something that is important to me and important in general. By participating in political societies and political party events I hope to try and make a difference, and also show that autistic people can be involved in politics. I’ve tried giving this up before because it can be a source of stress, but it didn’t work for me – it made me feel like I was doing nothing important with my life. So the more politics, the better, as far as how I feel about my role in life is concerned.

After having all this to do, you would be forgiven for assuming I would make no further commitments to actually give myself some time to wind down. But you’d be wrong. I constantly add more things to the list of Things I Should Do every week. This blog is one of them; I’ve committed to posting weekly (I missed last week due to illness, said so on Twitter) which takes about 4 hours of writing, editing and thought time each week. This is why I’ll be switching from Thursday to Sunday after this post – when the summer ends and I go back to classes, I will not have that time available on Thursdays.

Other further commitments include: volunteering in a charity shop for two hours a week, German lessons (though I might be giving those up because of a lack of time, funnily enough) and meeting up with my friends on Friday and/or Saturday evenings. While that last one is not a commitment per se, it is something that I enjoy doing, and something that I do feel I need to participate in if I am to remain a full member of the friendship group, something I’ve found difficult all my life.

By my estimations (and bear in mind they are just that), Sleep + Adulting + University + Non-political Committees + Politics + Blog + Volunteering + (German) + Friendship + Travel = 56 + 23 + 40 + 6 + 5 + 4 + 2 + (3) + 10 + 3 = 150 out of a total of 168 hours a week, giving me spare time of a mere 18 hours a week. Well, at least it’s not a negative number. And there’s the problem. Because that is insufficient time to recover from the amount of socialising I do in the other hours.

While 8 hours of sleep a night is factored into the above equation, the standard adult sleep time is insufficient to counter all the exhaustion I face as an autistic adult in the world – especially since I’m masking for most of those activities, especially the committees. I can find things both enjoyable and exhausting at the same time, they are not mutually exclusive. So while the things that require masking are exhausting, I also don’t want to give them up. 18 hours a week (2.57 hours a day) is not enough downtime to relax and counter the negative effects of the other 93 waking hours.

Also bear in mind that this is a typical week – most weeks are like this. Some are worse. In some weeks I need to do 50 hours of university work; other weeks require 10 hours for politics, maybe more. Holidays are of course much better as the university hours aren’t there. This week is okay only because of no university. This week, politics is estimated to take 7 hours and travel 7. Tonight I’m travelling to Inverkeithing for the YSI event which due to connection times could be about 2 hours each way. If this week was term-time, it would be a problem.

Last week I didn’t post, because I had a cold. Even a little illness can completely stop me doing anything – I’m very sensitive to pain. I can go a whole week only doing Sleep + Partial Adulting if I’m ill. So I try and add all the missed hours to the following week. Which normally results in a spare time output of a large negative number. If illness wasn’t a thing, I could probably survive a whole semester on my tight schedule. But the minute I become ill, the effects carry over for weeks and weeks and weeks until the thin threads of my life start unravelling; I lose friends and fail exams and everything is ruined.

With no margin for error, and a world that is full of potential causes of error, this is a situation that can’t be allowed to continue. But the only thing on my current list that I’m willing to give up is the German lessons (3 hours a week – 2 for class and 1 for homework). So as things stand, I’m going to be pushing myself beyond my limits for the foreseeable future. And hoping beyond hope I don’t get ill or distracted.

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For those who want a more detailed breakdown of how I calculated the standard week:

Sleep: 8 hours x 7 days = 56

Adulting: (2 hours cooking, eating & washing up) x (7 days) + (1 hour showering/brushing teeth/getting dressed) x (7 days) + 2 hours shopping = 23

University: 40 hours as the standard work hours, there’s a more specific calculation I could do but that would take time!

Non-political committees: 2 hours x 3 committees = 6

Politics: 5 is an estimate I remembered from an earlier calculation, I don’t have my breakdown for it with me right now

Blog: 4 hours, I timed myself as I wrote this and then added my estimate for how long editing & posting would take.

Volunteering: 2 hours is what I said I’d do

German: Class is 2 hours and we get homework which takes about 1

Friendship: 10 is an average, can be as little as 5 and as much as 14, usually 5 on Fri and another 5 on Sat. Can be 7 hours each, can be only 5 on one.

Travel: Since I live in a small town, travel time to a single location is always less than an hour, added together travel to all events over the week (about 26 individual journeys, possibly more) only sum to 3 hours usually.

A Culture of Noise – Autism & University 2

This is the second of three posts I will be writing about my experiences at university as an autistic undergraduate student. These experiences are my own, and do not necessarily reflect those of other autistic students. I study mathematics in Scotland, other courses & countries would vary greatly. You can read the first post about academic structure here.

When someone mentions student culture certain images stereotypically come to mind. To many people, student culture is synonymous with alcohol fuelled parties and visits to nightclubs. This is, like all stereotypes, an oversimplification and an inaccurate picture of how things are. However it would be just as false to say that these things are not included in many students lives. I’ve already written about student drinking culture and how I ended up participating, but here I would like to focus on how inaccessible many aspects of student culture are to autistic people with sound sensitivities.

To begin, I’ll tackle alcohol and parties, the most well known element, but of course it is not the only one. Alcohol can taste disgusting to people with taste sensitivities. And then of course there’s people who just don’t want to drink, and that’s fine. I wish I hadn’t started half of the time. But the chances are, if you want to participate fully in student life beyond academia, you will be around people drinking at some point, whether you participate or not.

Some of this drinking will take place in people’s rooms or flats, usually with cheap supermarket alcohol that gets people drunk quickly. But more of it will happen in pubs and clubs. While I have been in some pubs that are reasonably quiet most others are very, very loud. They often have background music on, or the volume up on sports games, that makes it hard to hear what people say. Add to that all the other people having their loud conversations and you are bombarded with noise from all directions.

And the pubs have nothing on the clubs. I’ve been to some nightclub-style events in the students’ union (and that is the extent of my nightclub experience, as an autistic asexual person I would really have no reason to go to a proper one) and hated every one. They are nasty events, usually with strobe lighting and music at a volume that I question whether or not it should be classified as a health and safety risk. In my first two days at university, I went to such events because I wanted to join in, but I couldn’t hear anything anyone said and all that happened was I ended up hiding in the toilet with my hands over my ears trying to prevent a meltdown.

The only loud music type event I go to now is the twice-annual Geek Bop by the Science Fiction & Fantasy Society of which I am a member. It’s a costume event where all the geek societies come together and party. Much of the music is stuff from shows I like and the type of people who attend share my special interests and aren’t just interested in alcohol and sex. It’s enjoyable. But it’s also way too loud. I usually have to stay in bed the following day even if I don’t drink to excess because I spend the evening being bombarded by all the sensory stuff I prefer to avoid. Twice a year I have to push myself to burnout in order to participate in an event I look forward to.

I came to university in order to get a degree, yes, but I also looked forward to making friends and participating in social events. I have done this, but at what cost to my health? I push myself to my edge and I know there have been several times I’ve fallen over. I hurt myself in order to participate. And so I know that for people with the same sensitivities who actually care about themselves and don’t want to sacrifice their health, these events are not at all accessible. If the volume wasn’t so ridiculously loud, the lights weren’t so bright and flashing, and there was actually a quiet recovery space, then it would be so much better.

Now, I will discuss living in student accommodation. For me personally, I doubt I could have done this if it had required sharing a bedroom like the internet tells me Americans have to. However it did involve sharing a kitchen and living in a room with thin walls around people I had never previously met. I lived there for my first two years. In the first year, I got by quite well and found it acceptable although hardly brilliant (the heating barely functioned and it was not worth the money I was paying). The second year was a complete disaster.

In my second year, I was in a corridor that very much enjoyed partying. I distinctly remember “Mondays are shots night” as something mentioned once. They seemed to assign each of the seven days in a week a different form of drinking in order to drink all week round. And they did. I joined in a few time, much to my detriment. On weeknights they would drink to excess and stay up until the early hours of the morning. But I don’t care how much alcohol others consume, that’s none of my business. What is a problem is how LOUD they were after consuming it.

I think part of the reason I began to join in was because I couldn’t sleep through it anyway. As well as general desperation to fit in, which was the cause of almost all my actions between 2012 and 2016. I wanted to go to my 9am on time the next day, but I couldn’t get to sleep until they stopped playing music and laughing and shouting. Also creaking mattresses when they had guests over but I don’t wanna talk about that.

Student accommodation is necessarily an epicentre of student culture – including all it’s noisy party elements. This is so damaging to people who are sensitive to noise. There is nowhere to escape to when the noise is bombarding you from outside while you’re already sitting on your own in the room you’re paying extortionate amounts of rent for (although other places are hopefully better priced). The alternatives to this are private accommodation (but if you’re not sharing with anyone, that will cost twice your loan) or living at home and commuting (only works if you live near enough to a university, and also will make it much harder to make friends and join in with activities).

There is also a whole aspect of culture surrounding both romantic relationships, and separately recreational sex within or without relationships. But I don’t know anything about it, so I’m not gonna say anything.

So let’s discuss societies. Now, this is an aspect of student culture that I absolutely love and has made me so happy and probably stopped me from dropping out in my worst moments. I am on four society committees (too much, I know, but I can tell myself that all I want, I will not listen) and I love each and every society I am in. But it wasn’t exactly easy for me to get here. For each of those committees, I had to stand up and make a speech at an AGM. For me, with a background in political campaigning, it wasn’t that hard (but it was, the first few times I ever made speeches, way back when) but this would be an impassable barrier for some people.

Doing the work that being on a committee requires can also be difficult if you have executive function problems. For me, it provides a method of procrastination, and while I do have problems they work in such a way that the committee work does get done on time (even if other things do not). Of course, the amount of work is very much dependent on the committee, and even if you don’t wish to join a committee there is still barriers.

I joined society mailing lists by visiting stalls at the freshers fayre. This had two issues – having to speak to strangers on the stalls, and the noisy, overcrowded, extremely warm atmosphere of the freshers fayre. I didn’t manage to sign up for everything I wanted at the beginning of first year because the crowd was disorienting and I almost passed out from the temperature. There are so many people and while you are given a map, it can be hard to get through the crowd to find what you’re looking for, and then difficult to hear what the person on the stall says when they speak to you. I’ve since then been on stalls for societies at them and while sitting behind the table makes you slightly further from the body heat I’ve still had to change afterwards out of sweat dripped clothes, and that’s even with me choosing the lightest, most summery clothes I could.

If you don’t manage to sign up there, then the other option is sending an email asking to be added. Which of course can be difficult – how to phrase the email so it sounds the right mix of friendly and acceptable? So if and once you’re on a mailing list and have an email with a time and location of an event, then of course there’s attending the event – and if you’ve come to university without a friend then this can be very nerve wracking going alone.

I was lucky that I managed to get through most of these initial barriers because of the temporary confidence I had that summer because of events outwith my control actually having a positive effect, but any other week and it could have been a very different story being told right now. I was lucky I managed to join societies and make friends there in a somewhat miraculous fashion.

The story of my university social life is certainly not a tragedy.  But it so easily could have been – there were so many close shaves, chances that everything would be ruined that I somehow managed to avoid. And given how many aspects of student culture that I struggle to participate in, it is very likely that there are many more people who weren’t so lucky and didn’t push themselves quite so hard than there are success stories like mine. And considering how much of a mess I’ve made to my health to do this, I’m not quite sure it qualifies as a success.

The accessibility barriers autistic students face to participating in many of the major aspects of student culture are different for each individual, but they can be huge and immovable, and dangerous to even try. Universities don’t seem to offer much support (if any) for tackling these barriers to social activity, which means some students can be excluded from it, even if they wish to participate.

We would need a complete restructuring of society in order to solve some of these problems. But there are things that can be done to make student culture more accessible to autistic students. These could include: having quiet spaces in the students’ union to provide a break from noisy club nights; having an online sign up for society mailing lists that doesn’t involve speaking to humans or sending emails; and having quiet corridors in student accommodation.

The question of what can be done is one that needs to be discussed, but it must first be acknowledged by the wider student populace that there is a problem and a solution is needed.

Edited 20th October 2017 to correct two grammatical errors, and to remove certain personal comments in brackets I no longer wish to share.

Structure Struggles – Autism & University

This is the first of three posts I will be writing about my experiences at university as an autistic undergraduate student. These experiences are my own, and do not necessarily reflect those of other autistic students. I study mathematics in Scotland, other courses & countries would vary greatly.

In school I was accustomed to being near the top of almost all of my classes. And once I could choose my own subjects, that ‘almost’ disappeared. I found academic work easy, compared to the social struggles I faced each day and the experiences of my other classmates. I recall spending one night doing homework for four hours straight that wasn’t due for weeks as I found it fun. The academic side of school was a very positive experience for me (as opposed to the rest of it, meaning my experiences were overall negative).

With this background, I figured that attending a top university would be, if not easy, then at a level I could cope with and do well. This was not the case. In my first and second years of university, I went from bad to worse. I was almost denied entry to honours as my second year grades were very poor. I managed to scrape honours entry on the back of resits last August. Now I’m doing somewhat better but still much poorer than I believed I would back when I was in school.

My teachers would undoubtedly blame this on me choosing to leave home against their advice. I would like to state that this is most certainly not the case. Leaving home has improved my life greatly, allowed me to overcome some fears, and actually given me a social life over and above anything I ever dreamed I’d have. Instead I blame my academic troubles on the stark difference in teaching methods between school and university.

My high school had a very supportive and rigid academic structure. There was a lot of assistance given, and there were clear guidelines on what we should be studying and when. We were given set homework assignments with set deadlines and these were compulsory. I knew exactly what was expected of me, and when it was expected. Under this structure I thrived, partially because of the clarity of the instructions, and partially because of my fear of getting in trouble for not completing assignments!

At university this structure wasn’t just different – it was barely existent. Attendance registers were a rarity and in some modules there was little compulsory assignments to hand in. The majority of mathematics modules have the grades weighted very heavily towards the exam with little or no coursework. Class sizes are generally large, especially in sub-honours, and as such lecturers do not have the time to give feedback on written homework to everyone.

The lack of feedback is likely what hurt me the most. The only way for me to learn from my mistakes is if I’m told specifically what mistake I made. Without clear written feedback I kept making the same mistakes over and over again as I didn’t realise exactly where in my work the mistakes were. I stopped doing non-compulsory work as I wouldn’t get feedback and I found struggling with no hope of getting the answer too stressful to try.

Scheduling time is another part of university life I struggle with. In school there was set hours of classes which I had to attend. In university there are far fewer contact hours and less with every passing year. The majority of my time is expected to be independent study. But how to structure that time? Do I do a set module at a set time? What is there’s an assignment for another module due, do I focus solely on that? Do I make a written schedule? What if something changes last minute? If my written schedule is then broken I may have a meltdown.

The learning environment at university lacks a strict structure. For me, this creates no end of problems. There is less support, less opportunity to get help, and far greater expectations. The sheer quantity of information we’re expected to learn in a semester is too large for me.

With regards to my mental health, the worst part was the shock. There is too much difference between school and university and I was completely unprepared. In between primary and secondary, I attended some transition meetings with other autistic & disabled kids to help prepare me for the difference. Though it’s hard to tell if it helped because of my memories of that time being somewhat sketchy and I didn’t start writing a diary until later, it is possible that assistance with the transition did make the shock of the difference easier to cope with. But the differences between primary and secondary school are much less than the differences between secondary school and university.

With no help over the transition, my only knowledge of the extent of the difference came from speculation, fiction and the experiences of family members who graduated in the 1970s. Since my brain often discards information from unconfirmed sources, this was thoroughly inadequate preparation.

The lack of academic support at university has been detrimental to my grades and my learning, though I do often ‘finally’ understand things after the exam has been and gone, much to my annoyance. The speed at which we are expected to learn is faster than I had anticipated and faster than I am capable of going. Perhaps I could learn at this speed with proper support, but that is not something I have been given.

Though I have recently had an assessment for Disabled Students Allowance (DSA), money cannot buy me time or lecturers willing to give me written feedback. Equipment and software will help in some ways but it cannot help me with all my problems. The teaching methods at university (or perhaps just this university, I have no basis for comparison) are fundamentally different to the way I would like to learn.

I’ve been considering doing a postgraduate degree after I graduate in 2018, partly because I fear that employment prospects for my autistic self are likely to be terrible, and I feel I am adapting somewhat to the teaching methods at university. But I know I would struggle, both to receive a good enough undergraduate degree to progress to further study, and to actually complete one. Though I am interested in further study, I am worried I am not capable of following that path.

The world we live in often seems to think throwing money at a problem will solve it eventually. This is fundamentally false. A better welfare system would reduce the need for foodbanks, but it would not fix the fundamental causes of poverty. The faults in our planet are embedded in the structures of our society, and if we want to fix the flaws in the system we must fundamentally change how our society works, not just change some numbers in a budget.

University is the same on a smaller scale. The teaching methods are often fundamentally ableist and if we want to improve the experience of disabled students and allow more to attend university then we need to break down the structures (or lack of) that harms the learning of disabled people. Only then can we begin to solve the problems.

My experiences have shown that a lack of support can be detrimental to the ability of some otherwise very academically capable students to succeed. Everyone learns differently, and allowances need to be made for that or more and more people will fall through cracks.