‘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) (re-)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 severe depression and further treatment options. I was utterly miserable and unproductive, with my gauche isolation constructing an ever growing chasm between myself and the world around me. I’d always been odd and obstreperous. Looking back over my medical records, its resonant to see that even at six and seven years old I kept myself to myself and didn’t have many friends at school. It was hard for me to identify and put into words why I felt the way I did: about myself, the world around me, my being-in-the-world and that sense of being a step apart. During my appointment, I described my state. After several hours of consultation and looking over previous medical notes (particularly my initial diagnosis of ADHD-ASD in 2005 and subsequent ‘undiagnosis’ of ADHD as a small boy) the doctor concluded I was autistic; that I had Asperger’s. This was, to her mind, the major source of my depression – an inability to negotiate the world around me.

This came as shock to me. My mum had assumed that, due to the ADHD diagnosis being thrown out, the ASD diagnosis had been thrown out too. Blind to all else but the immediacy of this diagnosis (or blunt re-diagnosis), I watched the doctor print off some reading material for me about accessing council support services for autistics. She then informed me there was no ‘cure’ for my condition, and I left Newland House with my quietly bemused Mum. How was I to know this diagnosis was right? The ADHD label 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 why I feel isolated and unreachable. What is autism? What does being autistic mean? Wikipedia was distressing: declaring the ‘prognosis’ for autistics was ‘frequently poor’. My already questionable self-esteem plummeted, compounded by gaining a place at a university 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, my capacities and limitations, 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 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 in terms of hypo- and hyper-sensitivity. But autists don’t, as the National Autism Society observes, ‘look’ disabled or immediately different in all cases. 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).

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 often 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 and to respond to them ‘correctly’. Partaking in the diurnal machinations of family, school, and work life can be – and is for me – exhausting. Chris Packham, David Byrne, Jack Monroe, and Gary Numan are some of the popular figures that have implictly given me support through their discussions of living as ‘high-functioning’ autists, and they continue to give me hope as a person 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, which helps – 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. Fireworks are interesting one: I adore the lights but it feels like there is a black-hole-cringe inside me when they explode. This has become easier to handle compared to when I was younger and I can attend displays now (with some hard blinking/flinching). Leaving my university library in midnight winter, 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. The hum and the low-lighting coalesced in an unprecedented way. I frequently stim: that is, repetitive self-stimulating behaviours. This can be auditory, visual, and spatial. Orally/aurally, I have certain sounds, noises, expressions that bring me comfort when repeated. Spatially, I will often flap, moving my arms and legs in repetitive motions, walking around in repetitive, looping circles. I also like to watch the same film and video repeatedly, or listen to the same music track, repeatedly, often for weeks and months. Much of my time is thus spent with headphones on. I recall one of my undergraduate lecturers expressing concern about how often I wore earphones – immediately putting them on during seminar ‘breaks’ and after a seminar finished, and always entering seminars with them on until the last possible moment.

I try to avoid spontaneous and non-specific conversation and often plan all my conversations, anticipating the subjects most likely to crop up during conversation and what responses I can give that will satisfy the requirements of that conversation. I’m pretty much always anticipating the social and professional future – what I need to be tackling next and what may be coming. This vigilance is exhausting and is coupled with time-blindness. By time-blindness, I mean that this perfectionism, socially and professionally, takes up an inordinate amount of time and I’m often ignorant to how much time this is taking and how to effectively prioritise because I have to get it right. So I struggle with meeting my deadlines. If I do meet my deadlines, I’m utterly fatigued (but the work is often of a high standard because of the perfectionism). This time-blindness blends in, I think, with being unable to read when my body needs things: I sometimes forget to eat, and very often forget to drink – meaning I wake up in the early hours and consume vast quantities of water.

Regarding communication, I do remember during my first year of university, 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… I realise, now, that the sincerity and absurdity was unintentionally comedic. But I was trying to offer a serious explanation: that apple was gripping. I’ve often been told by people that they can’t tell if I’m serious or being sarcastic. The management of tone, expression, and intention is particularly difficult. I find it difficult to understand what people say and what people mean, via tone of voice and knowing when they are joking (the parasocial); I avoid supermarkets and people-packed places due to the unpredictability and anticipated infringement of my sense of control; 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; and I often use long, unusual, or complicated lexis in daily conversation – because that just feels natural. I can be 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 have often awoke with light bruises, aches, and pains. Poor sleep and an overactive mind are frequent occurrences for those on the spectrum.

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.

So, at university, 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 saddened 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 and people has been hard. I think for a lot of autistic people, that need to feel liked and validated and to interact with people is there – it’s just hard to find a way in that doesn’t feel too compromising and taxing.

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 late at night (when it is finally quiet). 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 uncomfortable, or like I was going to be scrutinised, or be considered unusual. As long as I was alone, I had a greater chance of being content and in control. 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. It looked (and felt) so draining.

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 work, namely talking and writing about music, literature, politics, morality, and ideas. The university was a workplace. I was there to work. I’m sure my background probably impacted this perception. I didn’t want people to think that there was nothing else beyond my work-orientation, however true that may be, and subsequently peg me as some one-track mind freak. In short, I wasn’t gregarious. Nine times out of ten, if I saw or spoke to anybody it was when I saw the very few people who I knew from a lecture theatre, in a lecture theatre. I spoke more often to my academics, since our group seminars were often me on full blast and office hours were a perfect social scenario (they have a clear purpose, I can talk about work as much as I want, they have a clear time schedule).

That isn’t to say that university hasn’t been an alienating and isolating experience, nor that I am some unemotional machine. I feel things incredibly deeply, with high levels of attachment and resonance – when a poem, play, painting, novel, film, or a song breaks through, I latch on to it with every sinew of my being. I just haven’t felt that in the company of other people. Rather, being around other people often actualises alterity, breaks the hermetic seal I have built, and often creates an enormous amount of stress: navigating conversations, knowing what is and isn’t permissible and when to/not to say it, parsing body language. My instinct is to be blunt, direct, and singular – but that can appear standoffish. So manufacturing a social face is a draining requirement. Practicing eye contact duration and gestures in the mirror at home has helped, I think. People can bring me a lot of joy + happiness, but they tend to be the ones I’ve known all my life or for a very long time – people whom I feel comfortable with and who I know won’t crucify me for some social peccadillo or major mistake. It can take an awfully long time to unwind around other people.

Regarding all I’ve said: autism is not a lodestone, and my ‘condition’ does not simply or solely pose obstacles. 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 identify patterns and weave complex arguments often sui generis within my cohort.

I don’t mean to reinforce sterotypes but, in the past, I’ve been able to sit down and read and write constantly with a level of unrivalled concentration, and feel a sense of joy and motivation and purposiveness I find indescribable. I have heaps and heaps of writing, journals, notebooks, digital memos, and chicken scratchings – I write just for the sake of it, to get it out of me. ‘Academic’ writing, however, can be like getting blood from a stone. But, when I reach that same state of hyperfocus (often when editing/redrafting), I feel absorbed, like I’ve entered another layer in the environment.

I haven’t felt able to talk to anyone about being autistic (because I don’t know any autistic people). Apart from with one allistic friend, off-hand, in a throwaway kind of way, and it wasn’t followed up or questioned. So I didn’t pursue the subject further. I just don’t think most people, young or old, are equipped to discuss autism. 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 their lexicon. Forrest Dunbar, another student, had a much different experience studying English. But I never said anything. I think fear either 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 work and interests remain what primarily give me security and value in a world where my own value is measured in a completely different, social currency – where my social value cannot be gauged and accessed easily and I find it hard to reciprocate and engage those who try. I don’t feel ashamed of my brain. I wouldn’t ever want to ‘give up’ being autistic. Though it means, socially, I am an island, it is also part of how I won my MPhil scholarship and will begin postgraduate studies 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 and a good worker. I wouldn’t change how I spent my time as an undergraduate. Whilst I spent most of it alone for my own security and well-being, I also spent it making triumphs and achievements. I got to study in Canada, something I have wanted to do 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 a primary school and working in a food bank; and I raised a considerable amount of money for charity with my half-marathon, inter alia. Being autistic means I am different and face some exhausting and frustrating obstacles, but I am also capable.

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.