What Being Autistic Means For Me

This week is World Autism Awareness Week, and though I’ve been exceptionally busy organising demonstrations in support of Clara Ponsatí, working on my dissertation and just generally doing more than I can cope with, I’ve decided to write about what I want people to be aware of about my autism.

I will begin with repeating what autistic people keep saying every year – awareness is not enough to make autistic people’s lives better. We need acceptance. Acceptance of who we are, of how we are different, and of our natural behaviour. We need a shift of priorities away from trying to change our behaviour to finding ways to change society so that we are accepted. It should not be our job to act unnaturally to fit into a neurotypical world.

For me, social interaction in the way deemed appropriate by society is unnatural and difficult, but I can do it. Partly because it’s easier for me to fit in with the norms than to constantly challenge them, partly because I’ve only begun to accept myself recently, and it’s hard to break the habit. And while I can appear perfectly comfortable in many situations, this is often an act.

I am heavily involved in political activism. In the past seven days alone, I have attended the SNP National Council, where I gave a speech on supporting the UCU strikes; organised a demonstration in support of Professor Clara Ponsatí, who is facing extradition to Spain on politically motivated charges; and spoken to a number of journalists about Prof Ponsatí’s situation.

Not only that, but this was my first speech at a party council or conference and my first time taking part in actually organising a demonstration. At the start of the week, I had very bad telephone anxiety. In this week alone, I’ve been on so many calls, from journalists and for job interviews that my fear of phone calls has almost completely gone. This is a very unexpected success but imagine how terrified I was before I made the calls!

While I probably appeared perfectly comfortable in all these situations, I am now completely burnt out and exhausted. There’s still more to do; next week is expected to be just as busy, if not busier. I will probably get through it all; but the minute I get time to rest I’ll probably sleep for over 12 hours trying to get over all this stress.

The part of being autistic I still don’t like at all is the sensory processing disorder. Bright lights can be physically painful, smells like cigarette smoke feel like they are burning my lungs, and I hear all the sounds. I mean all the sounds. I can’t sleep when in a room with anyone else because their breathing is too loud. Thankfully, I have little interest in relationships.

In terms of light, I don’t particularly like sunny days. I am a fan of light cloud cover. The sun can be so incredibly bright, and with all the cars and metal objects in our world, the sunlight is reflected from every which way. In an ideal world, I would wear sunglasses all the time – but I do not have enough self-confidence to do so. Fluorescent lights are also absolutely awful. I wish they would be banned. They give me migraines where my vision goes blurry, which in turn causes a panic attack to go with the meltdown caused by the sensory overload – a double whammy which I cannot control at all. I’ve ended up screaming in public as an adult over this.

Smells can be bad too, particularly cigarette smoke. I hold my breath when passing smokers on the street, and I refuse to host guests at my house that smoke as I can still smell it on them. I was in Dundee a few weeks ago for an event, and when walking to a pub after, one of the people I was with started smoking and I almost ran away. Please, please don’t smoke around me, especially without warning!

The worst sense for me is hearing. I can hear everything. I am wearing noise cancelling headphones as I write. I am in the university library, and I can still hear every time someone takes a sip of water, drops a book they were trying to get from the top shelf, or types frantically on their keyboard. Construction work is the worst for me, the mere sound of a hammer can send me into a bad rage.

This is my father’s fault. He had an extension built over the summer between my first and second years of university and I still half hate him for doing it while I was home. At the moment, both my neighbours and my parents’ neighbours are building extensions and frankly I want to flee the country. I want to live somewhere with no immediate neighbours in the future to minimise the risk of this noise.

In terms of taste and touch, my taste is as sensitive as my hearing, but it is easier to avoid bad tastes than it is bad sounds. For example, I cannot eat spicy food. At all. It makes me scream and drink about four pints of milk straight from the bottle(s) to calm down my taste buds. Do not tell me to just try it. Just don’t. Ever. Touch is actually not that bad for me, although it may play into my desire to never have sex.

Since I’ve had depression, my executive function has been particularly bad. I can counter this somewhat by writing daily schedules. What I need to do changes too often to set up a repeating schedule, so I need to write the next day’s out before bed. I used to be averse to change as well, but like with the phone calls this week, overexposure has helped somewhat. I would not recommend this though, I wouldn’t have done it on purpose. It was very painful at first.

I don’t want people to read this, and be aware of how autism affects me, just to turn around and suggest techniques to ‘fix’ this. The sensory stuff cannot be fixed at my end. Avoiding triggers is the only solution that will work. This would be so much easier if people were willing to make accommodations to lessen the impact. Accept how I am and accommodate it. You cannot cure it.

In terms of social interaction, I would like to see a societal shift away from eye contact and small talk. At the moment, continuing to mask uses up less energy than constantly educating people. Once university, and all the associated stresses, is over I hope to be able to educate more and mask less as it is a better long-term solution. At the moment, that is not possible for me.

So, this is me, an autistic university student with depression, who masks because it’s less stressful than having people stare at me when I act autistic. Who hears all the little sounds people make and often wants to run away and find some silence. Who can’t eat spicy food or sit in a room with fluorescent lights for longer than fifteen minutes or walk past a smoker without wanting to vomit.

Be aware of who I am but acknowledge that is not enough. Accept me, accept other autistic people, accept all neurodivergent people. Know that being autistic will mean different things for every autistic person. Know that we will all present differently, from each other and from other points in our own lives. Don’t just campaign for autism awareness; campaign for autism acceptance too.

The Chaos of Social Interaction

The world of human social interaction often seems to me to be the exact opposite of logical. People will say things they don’t mean, mean things they don’t say and act as if apparently implied subtext is of more importance than the words actually said. These actions can lead to a higher probability of misinterpretations and conflict. Yet, these social norms persist. Why?

I have on several occasions considered the possibility that our species enjoys it when things go wrong. The amount of unnecessary arguments, broken friendships and hurt feelings could be greatly reduced, if only people would make their meaning a little clearer. It is the logical thing to do, and considering how usually both sides get hurt in misinterpretations, the best thing to do emotionally as well.

Social interaction norms are baffling and nonsensical. Even a neurotypical person, when asked why people do a certain thing, usually cannot come up with a better answer than ‘because that’s what’s done’. Society seems to lack the capacity for change in this regard. We have a system which doesn’t work, hurts people and makes absolutely no sense. There is a very easy way to change it, at no cost. Yet we don’t.

Humans often seem to ignore our instincts. We cast aside any instinctual feelings we have if they do not suit our purpose at the time. Everything from the need to sleep for long enough, to the fight-or-flight response can be ignored by humans. Given these instincts are there for survival, I rather think evolution has disadvantaged us in that regard. Our instinctual method of communication ought to be truth, yet the common system is based in hiding the truth under platitudes and false emotions.

Autistic people who do not behave in this illogical manner are punished. Behaving instinctually, speaking your mind truthfully, taking people at their word – society tries to stamp these out of people in childhood. You want to behave in a logical manner? No, you must be disordered and defective, here’s some abusive ‘therapy’ to make you act More Civilised, Like Us.

The concept of ‘civilisation’ can be very harmful. Oppressors have used it throughout history to justify their occupations of countries they deemed ‘primitive’ or ‘uncivilised’. But civilisation is one of those words that the definition will always be open to interpretation. And often ‘civilised’ means no more than behaving in a manner those in power deem acceptable. No matter how illogical or immoral.

Saying there is only one ‘right’ way to communicate is always going to be wrong. In a neurodiverse world, there will always be a multitude of different natural communication styles, and this should be respected. At the moment, however, there is only one society has deemed correct: and it is a style that is confusing, illogical, and seems to defy nature. It seems unlikely this system of hidden truths and spoken lies is anyone’s natural style.

Misinterpretations in interactions can have a world of unintended consequences. Lives can be ruined, wars can start… and given the giant number of misinterpretations that must necessarily happen on the whole planet, there will be some positive effects as well. Yet the unpredictability is a result of our chaotic system of communication. The number of misinterpretations per person could be reduced greatly if only we could adopt a more logical system.

The truth should not be something we try to hide. Naturally, we want to avoid hurting other’s feelings, yet often a hidden truth that later comes to light can be infinitely more hurtful than to find out the truth from someone who cares about you. All too often these days, people neglect intentions in favour of results. Yet intentions are important in communication.

For example, if someone had chocolate on their nose, a friend could point it out in effort to prevent further embarrassment. A bully could point it out in order to hurt. Both these interactions use the same fact, and will probably have the same initial result (embarrassment of the person with chocolate on their nose). But these are not equal, due to intentions.

The world of social interaction appears on the surface to follow a strict set of rules. Yet due to potential misinterpretations, and the infinite number of different effects these can cause, the system is entirely chaotic. It’s a bad system; if you don’t believe it, analyse it for yourself. We as a species can do better, and we should. Society needs to realise that it’s social norms are nonsense, and adapt the systems of interaction to make them more inclusive for all.

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.

Student drinking culture, and why I joined in

It is common knowledge that in the UK, many university students often drink alcohol to excess. This is done in pubs, clubs, a friend’s house… wherever, really. And it is done often. Those who choose not to participate in the drinking often feel excluded, and though they are perfectly welcome to attend, it’s hardly enjoyable to be the sober one in a loud, crowded club that you can’t have a conversation in without yelling. Especially if you’re autistic, but also applies to any neurotype.

When I first started university, I did not drink. As a child I was quite strongly anti-alcohol, and I saw no reason to change this. I had no opposition to others drinking, but I did not wish to partake myself. I made it through to the last exam of my first year never having been drunk. I’d drunk a little alcohol on occasions – Christmas, birthdays, but only ever one glass at a time, never to excess.

I failed my last exam of my first year, and after exiting the exam I believed it highly probable. It had been disastrous. That night, I had an end of year social with one of the few societies I was in at the time. Almost every Tuesday for the year, I’d gone to their socials and events. They held their socials in pubs, and all year the other regular members had been encouraging me to drink.

There was so much stigma attached to not drinking, and I could give them neither a religious nor a health reason why I did not. And so they persisted. I ignored them every time, and strongly and easily told them no. However that day, following my failure, I decided perhaps I should give it a go – after all, with such a high probability I’d failed, my life was messed up, my principles shot to pieces, everything that made me who I was torn up and thrown out. Much of my identity rested on my academic capabilities at the time.

That was the first time I got drunk. Since then, much has changed. My grades have been terrible, I hate studying and I have no interest in my degree. I drank fairly regularly during my second year of university, as I had flatmates in halls of residence who constantly had drinking nights. Alcohol makes me hyperactive and often argumentative. Towards the end of my second year, I decided it had done nothing good for me, and plenty bad. I almost didn’t get into honours; I had to do multiple exam resits.

By some miracle I started third year. I did not drink at all from September up until one glass of cider in December. I did not fail any of my December exams. When 2017 began, I made it one of my new years resolutions not to drink.

I broke that resolution eight days ago, Friday 24th. I was out with the friends I miraculously managed to actually acquire; given how long I’d searched, I thought my quest for friendship was a lost cause. And my reasoning behind breaking this resolution? I felt left out. We’d gone to the Union, which is not our normal pattern of events. We tend to go to one of our houses and play board games or watch YouTube videos. There were seven of us, five of whom were drinking (though one did wander off and go see others half the time).

Naturally, I decided to join in. I was given an easy opening; one of them did not want a shot that had been purchased for her. And so it began. And that night was good, everything was fine. And so, when the group planned the same for next week, yesterday now, I decided to go along.

This time, all was not so okay. I drank far too much, and vomited in the end. The night wasn’t great and the next morning I just felt upset and angry with myself. For I’d remembered why I made the new years resolution – because this can only damage my grades, exhaust me for long time (after all, I’m masking all through the night and as more alcohol is consumed -> masking becomes more difficult -> I need to spend even more energy doing it), and because this is not who I was and not who I want to be.

I have no problem with other people drinking, but I never wanted to get involved in this myself. And I’m angry with myself for breaking my word. I’m angry with myself because when I read my diary entries from as little as two years ago, I see an entirely different person from who I am now – and I think I like her better.

I started drinking to fit in, I started drinking to make friends and later to keep them. These are common reasons, I believe, but they’re not good ones. I’d gone so long on my own with no friends, I was desperate. I compromised on fundamental principles of who I am. I don’t recognise who I’ve become, and I’ve done things that could mess up my whole future, given the effect on my grades.

The pressure to drink and the stigma of not drinking lead many students to participate in this culture of drinking to excess, and little is done about it. There are token campaigns to reduce student binge drinking, but nothing that actually tackles the root of the problem. ‘Students drink alcohol, if you don’t you are weird’ is too firmly ingrained in culture to go away overnight.

It’s not just a problem of statistics, it does affect people. Peer pressure is an actual thing, that I used to pride myself on resisting and now feel ashamed of allowing it to happen to me. I cannot turn back time, I can only change the present and hope it extends to the future. But it’s hard to change when the same pressures and same stigma remain that got me here in the first place.