The days I wish I wasn’t autistic

[Image Description: some small boats on a lake under a dark cloudy sky.]

I will begin by saying that, no matter if one wants a cure or not, it would be impossible to cure autism without fundamentally altering who that person is, as it would require altering how one’s brain is structured. Most autistic people do not want a cure and the Autistic community is against searching for a cure, and there are valid fears that if such research continues it would be used to promote eugenics and lead to the abortion of autistic foetuses in the same manner as Downs Syndrome today.

That said, even a member of the Autistic community who has spoken of pride in their neurology and seeks to end cure-based rhetoric, can have days when they wish they weren’t autistic. This is one of those days for me, as was yesterday. I try not to talk about this often as I fear it will be used against the autistic community, but it would be disingenuous of me to pretend it was all sunshine and rainbows, and I’ve never wished that I was neurotypical.

There are reasons I can’t go into detail about what prompted this mood, but suffice to say I had to leave something early due to my sensory issues. As a child, I had issues particularly with touch and taste, but these have become much worse as I’ve grown older. I’m still in my mid-20s and my great fear is that if they continue to become worse, the world will become so overwhelming that I’m unable to function in it at all. I may be able to exist as an autistic person in a neurotypical world today, but there are no guarantees for tomorrow.

Sometimes I feel so weak and cowardly. There are things I can’t do that most people can, and that people just simply don’t understand why I’m unable to. At times I feel ashamed of my ‘weakness’, especially when I’m unable to do things I used to be able to do. In the past year, I’ve almost certainly been regressing slightly, I need more support, I’m more anxious and I need to sleep almost half my day just to function at a below-average level. It’s somewhat soul-crushing to realise you’re unable to do the things you want.

Then there’s my lack of employment. I really don’t want to go into this in detail because it’s an extremely touchy topic and when people bring it up, it immediately sets me on edge. This in itself is a problem because ‘what do you do’ is a common small-talk question and it means every new person I meet immediately sees the worst of me. Between that and feeling inadequate and embarrassed at the fact that I’m not earning any money, this is an issue. I know my autism makes it harder for me to find or cope with work.

I’m a big fan of fiction, and I want excitement in my life like the characters in the books I read or the shows I watch. But I am no longer able to cope with the level of excitement I seek. It’s left me in a no-win scenario where I’m either overwhelmed and in pain from pushing myself too hard, or I’m sitting in my bed watching other people live their lives and feeling horribly jealous and upset that I’m not there. So on days like this, yeah, if someone offered me a cure I might take it.

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.

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.

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.