‘Lost my shape / Trying to act casual!’: Autism and HE.

I had to develop my own ways of dealing with being different. By the time I had got to university I’d come up with a strategy, and the strategy was really simple: don’t interact with people of your own age, just turn up, get straight As, and I wouldn’t speak to anyone.”

Chris Packham in Asperger’s & Me

In his documentary Asperger’s & Me, Chris Packham, naturalist and broadcaster, discussed the difficulty of living with Asperger’s without a diagnosis, exploring the nature of the condition and the effect of his diagnosis later in life during the early 2000s. Conversely, and I think more fortunately, my (second) diagnosis came when I was sixteen.

Originally, my appointment at the Newland House NHS Trust in Northampton had been scheduled, after meetings with my GP, to discuss my severe depression and further treatment options. I was utterly miserable and unproductive, with the gauche isolation I wore with such ease constructing an ever growing chasm between myself and the world. I’d always been an odd, obstreperous child, who preferred to spend sunny days indoors with books and computers. But, in the penumbra of puberty, reticent, I thought I was going to appear mad trying to explain how I had been feeling beyond what seemed to me like trite recapitulations. Yet, after several hours of consultation and looking over previous medical notes (particularly my initial diagnosis of ADHD-ASD and subsequent ‘undiagnosis’ of ADHD as a small boy) the doctor concluded I was, in the eyes of biopolitics, autistic; that I had ‘high-functioning’ Asperger’s. This was, to her mind, the major source of my depression.

Blind to all else but the immediacy of this diagnosis, I watched the doctor print off a plethora of reading material for me, as she informed me there was no ‘cure’ for my condition, and I was escorted from Newland House with my quietly bemused Mum. How was I to know they were right? Labels had been switched out before, with much difficulty and testing. As if to cement this clarification, a few days later, I received a dense letter delineating the doctor’s findings and conclusion: Christopher is autistic. Understanding this ‘condition’ and gaining access to support services will ameliorate if not etiolate the depression. 

I didn’t feel ‘liberated’ in the years immediately succeeding my diagnosis, and its been a comfort to find that I am not the only person who has felt a pronounced sense of shame alongside increased unease about my untouchable isolation. My already questionable self-esteem plummeted, compunded by winning a place at a university I adored despite not having the grades they said I would need. However, learning more about autism has made me feel assured in the diagnosis and more at ease with who I am – and, for the past two years, I’ve come to grow more familiar with myself and have been able to develop methods of coping with depression.

What is ASD?

Leaping up in public to do something wildly expressive and then quickly retreating back into my shell seemed, well, sort of normal to me. Maybe normal is the wrong word. A study in the British Journal of Psychiatry in 1994 by Felix Post claimed that 69% of the creative individuals he’d studied had mental disorders… I have become to believe that you can escape your demons and still tap the well

David Byrne, discussing his Asperger’s in How Music Works, pp.38-9.

Whilst I disagree with Byrne about whether autism (ASD) is a mental disorder, or a source of ‘demons’, he remains a powerful influence on my life as an autistic artist. His lyricism, elucidating that ‘Martian’ or ‘alien’ perspective of love, human relationships, and being-in-the-world, resonates deeply with me. But what exactly is autism?

Around 700,000 people have Asperger’s Syndrome in the United Kingdom – that’s roughly 1 in 100 – most of whom are males, though women have it too. Research pushes on – but the exact etiology of autism remains unknown. No two autistic people are exactly the same – further separating the condition from more overt, uniform physical disabilities. The way I see, hear, process, and feel the world around me differs markedly from non-autistic or ‘neurotypical’ people – but autists don’t, as the National Autism Society observes, ‘look’ disabled or immediately different. It all lies largely in our conduct – hence why some (usually not self-advocates) refer to autism as a ‘hidden disability’ (it’s not hidden for us – let me assure you!)

Whilst certain difficulties are shared amongst those with autism, the way in which these difficulties affect each person, and to what extent, differ. The major difficulties encompass the social fulcrum in which life pivots upon, that is, the ability to understand other people’s intentions, purposes, and what they mean communicatively. Partaking in the diurnal machinations of family, school, and work life can be – and is for me – utterly exhausting. Chris Packham, David Byrne, Jack Monroe, and Gary Numan are some of the popular figures that have given me great support through their discussions of living as ‘high-functioning’ autists, and they continue to give me hope as a man with what feel like quasi-Faustian aspirations (socially and professionally)

In my case, I have a high-tactile sensitivity which has often caused significant difficulties – I hate and lash out against certain physical pressures, typically when being touched; hand-dryers in bathrooms drive me to tears (though now I just bite my tongue – hard – or avoid them entirely and try to find a bathroom with paper towels); I’m easily transfixed into solipsism by certain lights, colours, and sounds. Not too long ago, leaving my university library near midnight, I saw the low-humming, yellow pallor of a street lamp and that was it – I parked my bike, found a bench, and spent an inordinate amount of time just staring at it, indifferent to the cold. I frequently stim – that means, repetitive self-stimulating behaviours – often making certain noises and replicating certain frequencies I like, as well as moving my arms and legs in repetitive motions. I also like to watch the same film/show repeatedly, or listen to a music track, repeatedly, often for days or weeks on end. I could go on, but there are some things I don’t even feel comfortable sharing here. And it would be nice to think, someone, somewhere, would hold something back…

Though I do remember during my first year of university, I was eating an apple at home and just got lost in the texture. It was just a solid 20-30 minutes. I’m not even sure I could put it into words. It was an indescribable joy – one that made me late to one of my seminars. I fell through the door to my Academic Community meeting, late, stating ‘Sorry I’m late – I was eating an apple and got lost in the moment’. I was perfectly serious, and was met with laughter, which, in hindsight, is understandable and probably for the best… I realise now that the deadpan delivery and absurdity coalesced into comedic effect. But I was trying to be serious… I’ve often been told by people that they can’t tell if I’m serious or being sarcastic. It’s an interesting thought, being concealed or unknowable in the eyes of others. But then, how are we able to know ourselves if not through the perceptions and reflections of others?… It’s not like we get to decide.

I find it difficult to understand what people say and what people mean, via facial expression, tone of voice, and knowing when they are joking (the parasocial); I avoid loud or busy places due to the sensory bombardment in which my sense of control feels compromised; I struggle to physically stay still and often have to move about to stay comfortable when sedentary; I have repetitive behavioural patterns and cling to my routines (such as eating the exact same thing, everyday, for every meal); and I often use long, unusual, or complicated lexis in daily conversation – because that just feels normal to me. I can be very silent for a long time, when I’m gestating and processing everything around me, and will then burst into loquacious animation. Everyday I wake up with pillows flung from the bed and the duvet on the floor, because I move excessively in my sleep – I often wake up with bruises. I hope to get a weighted duvet.

Being autistic has led to me receiving a lot of labels: arrogant, distant, difficult, unemotional, quirky, unusual, inter alia. It has also resulted in a lot of bullying during that oh-so-delightful period of my life as a teenager. Perhaps my most memorable experience with Asperger’s was during my first year at university, in which somebody posted a note under the front door of my student flat peppered with vitriol, spouting on about how everyone on my course thought I was a stuck-up robot.

I thought about that a lot. Subsequently, I intensified my use of that strategy that, unbeknownst to me, Packham had also pursued decades earlier whilst he was at university: stay away from your contemporaries, work hard, and leave. I often feel sad about the fact that I’ve never really experienced the ‘social’ aspect of university. I like my own company. I like me. But making that overlap with university has been hard.

My time at university

Now I have just finished my undergraduate degree, the epigraph of this essay has a profound, validating property. I’ve spent most of the past three years sequestered away in my bedroom or, in the last year, studying in the library, nose to the grindstone. The opportunities to go out and to be included did present themselves in the beginning, but I rejected them – it felt like the only way I could exist without feeling like I was going to be scrutinised or be considered a freak. As long as I was alone, I had a greater chance of being content. Or, at least, safe. Being around my peers made me feel utterly alienated by their ease, their speed of recognition, their ability to conform, fit in, tune in, and turn off.

I didn’t want to party, or go to clubs and pubs; I didn’t want to drink; I didn’t want to make small talk; I didn’t want to be part of an extracurricular society; and I couldn’t understand why other people cared or would want to either, or why or how I should care in turn; all I wanted to do was indulge my interest: namely talking and writing about music, literature, and philosophy. I didn’t want people to think that there was nothing else beyond that, however true that may be, and peg me as some one-track mind freak. In short, I didn’t feel the need to seek comfort from other people, nor their validation or company, and the only time I ever saw or spoke to anybody was when I saw the very few people who I knew in a lecture, or if I spoke to my academics.

That isn’t to say that university hasn’t been an alienating and isolating experience, nor that I am some unemotional machine (another stereotype!) I feel things incredibly deeply, with levels of attachment and resonance unmatched by others – when a poem, play, painting, novel, film, or a song breaks through, I latch on to it with every sinew of my being – a feeling I don’t think I could have/haven’t had with a person. Rather, being around other people actualises my alterity, breaks the hermetic seal I have built, and often creates an enormous amount of stress: navigating conversations, knowing what is and isn’t okay to say, parsing body language. Practising eye contact duration and gestures in the mirror at home has helped, I think. And people, too, surprise me sometimes – they can bring great joy, in their own way.

Regarding all I’ve said: autism is not a lodestone, and my ‘condition’ does not pose obstacles nearly as burdensome as my non-verbal counterparts. My autism is the source of all the qualities that make me good at what I do: namely, reading and writing critically about literature. As it turns out, people with Asperger’s tend to be rather bright! My mind is frenetic, constantly making connections in and across the books I am reading and have read, enabling me to weave complex arguments and exegeses often sui generis within my cohort.

I don’t mean to reinforce sterotypes but, during past experience, I’m able to sit down and read and write constantly with a level of unrivalled concentration, and feel a sense of joy and motivation I find indescribable. I have heaps and heaps of writing, journals, notebooks, and chicken scratchings from my typewriter – I write just for the sake of it, just to get it out of me – it is the ultimate satisfaction. I have often heard people talk about struggling to feel motivated or waking up in the morning and not wanting to do anything: I have never felt this way with literature, reading, and writing. My studies, reading, and writing – they are my raison d’être.

I haven’t felt able to talk to anyone about this. Apart from with one friend, off-hand, in a throwaway kind of way, and it wasn’t followed up or questioned. So I didn’t take it further. I just don’t think most (young) people are equipped. Though, I never told my academics either, largely because I was afraid of facing prejudice or misunderstanding. People would start putting me in boxes they’ve built about something they don’t know about and/or they would begin acting like they are walking on eggshells. When it came to my writing, I was regarded as bright and committed – unusually so, producing ‘unusual’ work, as I was repeatedly told – but they weren’t antsy about me and my work, not like I thought they would be if ‘autistic’ and ‘Asperger’s’ st(r)uck upon the lexicon. Forrest Dunbar had a much different experience studying English. But I never said anything. Fear overwhelms faith, or becomes faith. I was doing well academically though struggling, immensely, socially. In thinking about broaching my struggle with staff, I had seen ‘the moment of my greatness flicker… and in short, I was afraid’.

To conclude…

It’s summer now. The final year is over. My academic pursuits remain what primarily give me security and value in a world where my own value is measured in a completely different, social currency – where it cannot be gauged and accessed easily and I find it hard to reciprocate those who try. But I don’t feel ashamed of my brain. I wouldn’t ever want to ‘give up’ being autistic (I’m looking at you, Elizabeth Moon). Not for a moment. Yes, it means, socially, I am an island that few can or would even (want to) tread upon…

…But being autistic is also part of how I won my scholarship and will begin postgraduate study at one of the most prestigious universities in the world later this year – achieved because of and not in spite of my autism. It is part of what makes me unique. I wouldn’t change how I spent my time as an undergraduate. As, whilst I spent most of it alone for my own security and well-being, I also spent it making triumphs and achievements both personal and academic (although, these are one and the same). I got to study in Canada, a dream I have held since I was fourteen; I won several academic awards and grants; I became the ‘best’ UG student in my university department; I helped a lot of people through the volunteering I did outside of university, teaching in schools and working in a food bank; and I raised a considerable amount of money for charity with my half-marathon, inter alia.

So though I ‘um’ and ‘ah’ at the Janus of great change, I close here with Max Ehrmann in my mind:

Be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here… And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul… Be cheerful. Strive to be happy.

Max Ehrmann, ‘Desiderata’, ll.22-28.

3 thoughts on “‘Lost my shape / Trying to act casual!’: Autism and HE.”

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