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.

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