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.

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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 (source: me, cause I have so many taste things I could write a dissertation on it). 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 (on a Tuesday night in a pub that’s now closed down so clearly wasn’t that popular) 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 (I maintain alcohol makes people talk louder) 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 student’s 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 (yes, even the stuff this April didn’t destroy everything). 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 student’s 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.

Eugenics is Fundamentally Immoral

CW: several mentions of Nazis and Nazi policies

Anyone who has engaged with or watched the disabled twitter community over the past few days will have seen the seemingly endless debates over eugenics, prompted by this post. At times like these, what little faith I have in humanity is lessened, and I fear for the future.

Eugenics has it’s roots in the late 19th/early 20th century eugenics movements, however it is best known for it’s use by the Nazis during WWII. Early eugenics involved encouraging certain groups to reproduce while discouraging/preventing people with “undesirable” genes from reproducing. The second part, negative eugenics, can been seen in the Nazi’s horrific Aktion T-4 program, where they exterminated disabled people.

However, modern technology has now produced the possibility of eugenics in a different manner – that of gene editing. It is this that the article which started the debate focused on. The writer of the article claims they would “love to see the option to remove any genes that cause disability.” The writer faced considerable backlash on twitter from disabled people.

Then another person appeared on Twitter, writing “And if you can find a single Autistic person or Deaf person that doesn’t want there to be a magical cure for that I’d be surprised” which at the time of writing this paragraph, has 221 replies, most of which are from autistic or deaf people who do not want cures (myself included).

The majority of autistic people do not want a cure, but the majority of the neurotypical population do not seem to acknowledge this. Neurotypical people continue to set up cure-focused research centres and ‘charities’ like Autism Speaks, NT parents of autistic children force their kids to go to ABA ‘therapy’ (widely seen by autistic people as abuse) to try and force their kids to act NT, and then there are a number of people who want to find the ‘autism gene’ so they can abort us before we are even born.

Eugenics is never okay. It doesn’t matter what form it takes, eugenics with technology still has the same fundamental goals as the eugenics of old, it should not be seen as more acceptable to prevent the birth of disabled people than to kill us after we are born.

Eugenics is being used today. We see this in the widespread abortion of Down’s syndrome foetuses. Genetic screening for Down’s syndrome is possible, and 90% of positively identified Down’s babies are now aborted. If a genetic cause for other disabilities, autism included (not that it’s likely) was found, then there is a good chance the abortion rate would be as high for them. Especially given the majority of society’s attitudes to disability.

Of course, most supporters of modern eugenics want the technology to alter the foetus so an abled, neurotypical baby is born, rather than aborting the foetus. However the technology to do so is experimental and new (US scientists only sucessfully edited the genes of a human embryo on the 2nd August, 8 days ago from time of writing). So at the moment, the main method of preventing disabled births is abortion.

Proponents of modern eugenics would like to isolate all the genes that cause any disability, and edit the genes of the child. This is the goal of the modern eugenicist – to genetically engineer babies so they are not disabled. This technology has been in the development for years, and debates have sprung up throughout that time on the ethics of such technology.

One of the main controversies surrounds the issue of ‘designer babies’ – if it is possible to edit any genes of an unborn foetus, then why shouldn’t prospective parents be able to choose eye colour, hair colour, skin tone, general appearance, intelligence, strength, sex etc? If scientists can isolate a genetic cause for anything, then prospective parents could theoretically choose whether or not their child has that thing, or what variety of that thing their child has. But should parents have the authority to decide all that for their children?

One of the main problems I have with this technology is that it would likely be incredibly expensive. Although I live in a country with a national health service, it seems unlikely that anything but the most basic alterations would be available on the NHS, and there are many countries where all healthcare is private. This would lead to rich people being able to create designer children with high intelligence, conventional attractiveness and superior strength.

These genetically engineered children would likely do better in school and at sports, gaining all the top university places and the best jobs, creating a distinctly separate class from the basic natural human that poorer children would be. It would widen the wealth gap significantly, and make any kind of socioeconomic mobility near impossible. Over time the technology would come down in price, but by that time there would be two very distinct classes of human, and the rich would still have access to any new innovations in the field of genetic science before the rest.

As an autistic person, my brain functions differently from the majority of people. I think and process things differently, and in my opinion this makes me neither superior nor inferior to the neurotypical majority. As in all aspects of life, I value diversity, and I believe that humanity functions as a whole at its best when there are a wide variety of different perspectives to any issue that arises.

It is my belief that if all neurodivergences were eliminated from the population, that the human species would be in great trouble. Reduced to only the neurotypical way of viewing the world, human society would become monotonous and dull. Small talk and socialising would be far too great priorities in that society. If that is what the future holds, and I fear it is, then I am glad I will not survive to see it.

We do not want to be replaced by our neurotypical, abled clones, we do not want to be prevented from ever living at all as who we are. To take away someone’s disability is to change who they are. To edit the genes of someone is to change who that person is. If someone gave me a ‘cure’ for my autism, they would kill me and give life to a different neurotypical person inside my body.

In that way, genetic engineering technology is little different to aborting one foetus and then getting pregnant again with an abled baby a few days later. You kill the initial person to replace them with another. So whichever style of eugenics is used, in the end it amounts to the systematic murder of disabled people.

It is my great fear that this technology will become prevalent, and that in the future most babies will be genetically engineered in some way. The technological modern eugenics does not seem to have the same stigma as the eugenics of the WWII era, and in fact many seem unaware of the history of eugenics or the origins of the term at all. I fear for the autistic community, that we will be wiped out in a misguided attempt to prevent ‘suffering’ by people who refuse to hear us even when we shout.

It greatly concerns me that it appeared to be only disabled people who were objecting to eugenics on twitter this week, that our allies are nowhere to be found. Disabled people as a group are frequently ignored, talked over, and not listened to. We can raise all these concerns but in the end, without allies I fear that we will lose this battle. Our existence is threatened, but abled people turn away or worse, join the ranks of the eugenics proponents who would rather we were never born.

Eugenics is a fundamentally immoral idea. Any and all attempts to put it into practice, be they in the past, present or future, were/are/will be unethical and will lead to the death of many people who have a right to life. In my opinion, there is no justification for eugenics and I will oppose it in all forms until the day I die.

One world war has already been fought against advocates of eugenics. I worry that it will take another to prevent disabled people from being wiped out entirely. Or worse – it happens with no war, because nobody thinks we’re worth fighting for.

If I have made any factual errors in this, please message me as neither history nor genetics are my field of study.

Political Campaigning While Autistic

I developed a reputation in 2014 for being a dedicated and hard working political campaigner. On four separate occasions I heard people tell someone else that I was good at it and ‘enjoyed’ it. I have no idea where they got their information, but the notion of my enjoyment is fundamentally false. As people who have read any of my autism stuff will know, I frequently put on a mask and try to pass as neurotypical. It’s a false personality, created not of lies but merely omissions of fact, a neglect for the truth of who I am.

The mask I wore to canvass completely covered my truth. I was not me on those days, I was a good little activist, campaigning for Yes and later the SNP, saying exactly what I was meant to say. The politics of it was the only truth, after all if I didn’t believe it why would I campaign? But how I said it and when I chose to speak was an act designed to stop people from being put off by my true autistic self.

The first time I went canvassing was in March 2014 in the long run up to the September 2014 Scottish independence referendum. I was in my last few months of secondary school, at a time when I had few friends and an almost nonexistent social life. I would see people posting pictures on Facebook of all the things they’d done at the weekend while I sat alone reading. I had made my decision on how to vote in the referendum back in 2013, and I had become somewhat obsessed with reading about the referendum.

It was doing this that I found out about the Generation Yes campaign launch in Glasgow, seeing it as an opportunity to get involved with the campaign for independence, actually do something with my weekend, and possibly make some friends. And so I attended. Thus began my involvement in the independence campaign.

Over the course of the following few months I would campaign on a Tuesday night in East Kilbride, a town near where I lived, so as to avoid the houses of my school bullies in my own area. Once exams were over and I’d left school, the frequency increased massively. That summer I did two things with my life – volunteered at the Glasgow 2014 commonwealth games and campaigned for independence. Given the short length of the commonwealth games, you can conclude how much time I spent campaigning.

Given my lack of friendship and struggles with finding autism-friendly employment, in my desperation for something worthwhile to do and a way to pass the time I pushed myself to my limits with the campaigning. In such a polarising high-profile campaign, there were naturally a considerable number of people on both sides who felt incredibly strongly about it. Some of these people were prone to harassing campaigners from the other side on the street. I still had issues with confrontation stemming from my childhood experiences, and as such this was incredibly damaging and hurtful to me.

On days when such a confrontation had occurred, be it on the street or on the doorstep, I had to take the following two days to calm down, often shaking and crying and doubting myself and everything I believed in for several hours after I returned home. I entered a rapid cycle of campaigning until burnout then repeat. It was unhealthy, but I didn’t tell anyone because at the time I kept my autism a closely guarded secret.

After the referendum, I joined the SNP and became involved with SNP Students, joining their National Executive Committee in my second year of university. As part of SNP Students I again attended campaign days where we would canvass in the run up to the myriad of elections there has been since then. It was expected of me, and I didn’t want to let down all those who by that point believed I was an avid campaigner.

As the months passed, I gained new friends from university, who were not involved in political campaigning, and many of whom disagreed with my politics. Campaigning was no longer the only social life I had. And with this new comparison of activities, I discovered that I did not enjoy campaigning nearly half as much as I thought I had. The stress of having to make eye contact and small talk with a hundred people in a few hours may have seemed enjoyable compared to the loneliness of the nothing I’d had before, but now it seemed only to be stress.

This revelation showed me that canvassing is something that is inherently harmful to my mental health, increasing stress and anxiety and making burnout worse and more frequent. I began canvassing to distract myself from the emptiness I’d felt in my life for all my secondary school years, but at that point I’d have taken almost anything over being alone. Though physically capable of canvassing, it was harming me mentally.

Since those days, I’ve discovered the autistic community on twitter (I briefly joined some FB groups but there was so much confrontation and discord in them that it made the twitter arguments look like friendly banter) and begun to accept myself for who I am. I have made friends, lost a few, and made more. I actually have a social life that doesn’t involve campaigning or any kind of organised activity. And I know the truth of why I went canvassing – to fill a void.

There is a stigma around refraining from an activity for mental health reasons. Many people seem to believe that if you can do something physically then any mental reasons are excuses for laziness. This is something I’ve seen in political circles. Since I’ve done it before, I must therefore be able to do it now. This is based on the false premise that nothing has changed.

I am exhausted. All that life I said I have now is draining me. Academic struggles, the pressures of socialisation, and all that has happened since 2014 has exhausted me. In school I found academic work easily, and I had nothing else happening. That’s a lot more time for recharging. These days, during term time, I’m busy nearly every minute of every day and there is no time for a break. As such, my ability to cope with stressful situations is lessened.

Canvassing is the most stressful campaigning activity to me because it involves going to people’s doors and disrupting them in their houses. While I, a politics geek, get excited if a political canvasser arrives, others react in the way I do when it is someone selling something – irritation and resentment for the presence of a disturbance. Partly due to my experiences in school, I can’t stand it when people are irritated with me or resentful of my presence. On a street stall, people approach me, which makes it easier as they want to talk (and if they start yelling there will be someone else to argue with them).

To go canvassing now would be dangerous to me – if I was yelled at or personally insulted I doubt I could wait until I got home to burst into tears, and frankly that is not behaviour you want from one of your party campaigners. In my attempts to help, it’s likely that I would end up doing more harm than good if I try and canvass in the state I’m in these days. I can still post leaflets through doors or stand at a street stall, but I don’t want to canvass any more.

The line between ‘can’t’ and ‘don’t want to’ in this is blurred, to me it is both at the same time, but to some others they deny my inability and insist it is solely lack of desire. Right now I would like to make one thing clear: it is perfectly possible that I could go canvassing tomorrow and not burst into tears while I’m out. But if I did so, I would go home that night exhausted, climb into bed and sleep for about 14 hours while shaking in fear and stress. That would not be me being able to do it – that would be me hurting myself.

I need to make one thing abundantly clear – ability changes. What an individual can do today, they may not be able to do tomorrow. What I could do three years ago, I cannot do in 2017. Life interferes and changes things. It can hurt or it can help, but it never allows anything to stay the same.

Things may change again, and in the future I might find myself doing what I did in 2014, to the detriment of my own health for a cause I believe in. But don’t hold out any hope. I am not in control of the factors which affect my disability. As for right now, I’m not going canvassing and if anyone gets annoyed at me, I’ll just send them the link to this.

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.

Eternal Mistrust and Worry

Throughout my high school years, I tried so many ‘plans’ to make friends, that I ran out of letters in the alphabet to name them with thrice over. I failed time and time again, but the disappointment never stopped being as bitter as it had the first time. In Scotland we spend 6 years in high school (you can leave after 4 but I stayed until the end), and over the first five of those I experienced so much disappointment in my social life.

It seemed that every group of friends I ever made eventually became annoyed and angry at me, for having what they termed ‘temper tantrums’ but were actually meltdowns; for not conforming to social expectations; for just being ‘weird’. I went from group to group like a stray cat visiting houses for food only to be turned away again and again. Everyone else seemed to me to ‘belong’ somewhere – so why could I never find a group willing to accept me?

Some of the friendships did work – for a while. I called it the Eight Month Mark, if I recall correctly – after eight months of making friends with someone, that person would dislike me and never wish to speak to me again. Perhaps by the end, and I’m really not impartial enough to judge the accuracy of this, it was a self-fulfilling prophecy. As the time approached eight months, perhaps my anticipation of the end caused me to self-sabotage. I really wouldn’t know.

In my sixth and final year of high school, I finally found a friend who lasted past eight months. She and I are still friends even though we now live greater than 80 miles apart as she stayed at home and I left for university. It’s coming up on four years from when we first made friends, and that in itself is a miracle. I finally found someone who accepted me for who I am, but it was a long time coming.

Eight months into that friendship I did grow somewhat paranoid, but somehow it didn’t chase her away. But even so, up until very, very recently I always thought that something would happen to tear our friendship apart. I was so worried, because in the back of my mind lay the thought ‘you’ve always failed before, you’re destined to fail again. Nothing ever changes, you’ll always be alone’. And it was wrong (for once).

Since beginning university, I’ve made more close friends who actually accept me for who I am. I spend (probably too much) time with them every week, and I don’t even have to fully mask around them cause the real me doesn’t seem to scare them like it scared so many in school. I’m close with them to the point where I’ve trusted them with secrets I don’t usually tell anyone. I even live with a couple of them, instead of living in student halls, which is something I never thought would happen.

But even given the time when the thoughts in the back of my mind were proved wrong, still I cannot let go of this fear that something will happen to destroy it all. I keep imagining that some of them are angry with me, or conspiring to leave me out cause I wasn’t invited to something – even when the event in question happened at 3am while I was asleep. I can’t get rid of these intrusive thoughts, even when I’m begging myself to stop and just believe that miracles can happen.

Because this is a miracle. A fairly large group I feel comfortable with, that I don’t have to mask around, who actually like me? The stuff of fairytales, my younger self would believe. It’s beautiful and magical and so utterly improbable that even thinking about it can give me a profound sense of joy. I cherish this friendship so much, and it is more than I could ever have hoped for.

But it seems I’m still not able to believe in miracles. I still think everything is going to fall apart and I can’t stop these thoughts recurring over and over. It’s long since past eight months, but still I cannot stop with this fear. Still I cannot stop but think it’s too good to be true. And I am terrified I will self-sabotage again.

The legacy of my time in high school is my eternal mistrust of everything good that ever happens to me. My past is so littered with disappointment that I am incapable of believing I will not be disappointed again. Some people miss school; for me it has permanently damaged me, made relationships with others so much harder than even it was for my autistic self to begin with. I don’t think I’ll ever stop worrying, and I don’t know if I will ever be able to fully trust.

The Intersection Between Pride and Shame

There is a growing movement online around the concept of autistic pride. Many, though not all, of the autistic people I have become acquainted with online over the past six months or so are proclaiming their pride to be autistic, and talking about how autism acceptance is needed, not just autism awareness as so many organisations prefer.

Personally, I am proud of my unique way of thinking, so different from the neurotypical (NT) mind, and the way it enables me to be aware of things that NTs would not notice. I am proud of my ability to focus intently on special interests, which can be incredibly useful (if you pick the right special interest!). I’m even proud of some aspects of sensory stuff, like my ability to hear very quiet sounds or taste if there’s a slight change in a recipe.

But then I have a meltdown. I am greatly ashamed of my behaviour during meltdowns. It’s embarrassing and inappropriate, and it hurts those around me. It ruins friendships, and nine times out of ten it is completely out of proportion to the thing that triggered it. The behaviour is not justifiable in this world and meltdowns generally turn any argument I have into one which the bulk of the blame lies with me. This particular autistic trait has been the cause of the majority of destroyed relationships and opportunities I have behind me.

So how do I reconcile these conflicting feelings of pride and shame? In describing being proud of being autistic to a NT, that NT then will likely believe that I am also proud of my inappropriate behaviour during meltdowns. In admitting my shame around meltdowns, it becomes very difficult to discuss pride, as it is often taken as an admission of shame around autism altogether.

Recently, I had my first major meltdown since joining the autistic twitter community I now find myself a part of. And it made me rethink my eagerness to proclaim autistic pride, a concept I have only recently heard of. I used to be ashamed of my Aspergers, back in high school. Perhaps I was too quick to write off all my feelings from then, too quick to accept the whole without examining individual traits as things in their own right.

To me, autistic pride implies pride of the whole, not of a subset of autistic traits, even if that subset is a majority. So perhaps I should say I am proud of some aspects of being autistic. I find no pride in meltdown behaviour, no pride in the way my bluntness can often upset NT friends. I found no pride in the anger I felt because the other person in question did not accept “I’m autistic” as justification, following that meltdown.

In truth, it was NOT sufficient justification. My behaviour was unacceptable, but in the anger of the moment and with the influence of the twitter community I believed I could justify myself using something that was not entirely relevant to the picture. We cannot control meltdowns, but we can control whether or not we apologise for our actions during them after they are over.

Some may wholeheartedly disagree with this piece, and I accept that not everyone will share my views on this subject. But I personally cannot take any ounce of pride in a behaviour which hurts both myself and those around me.

Talking about pride around something with so many aspects as autism/Aspergers is a difficult thing to do. Any individual will surely have traits they are proud of, traits they are ashamed of, and traits they feel neutral about. It is not like pride over sexuality; being autistic has much more dimensions to it that my sexuality (grey-asexual lesbian), and each dimension is very different. It is more akin to being proud of yourself in general. The majority of people have aspects of their personality they are some level of ashamed of.

I do believe that autism acceptance is badly needed, but I don’t believe in personally proclaiming pride over a whole which contains aspects I feel ashamed of. I cannot separate the meltdowns from my autistic identity, and I will not be proud of that behaviour.