Dx: Diagnosis and Writing
Reflection: Notes on Writing with Autism
Anonymous Woodcut, L'Atmosphere: Météorologie Populaire (Paris, 1888)
'It’s a peculiar sensation, to understand that there is a name for what you are.'
It’s a peculiar sensation, to understand that there is a name for what you are. I don’t remember how the conversation started – or, indeed, any details beyond the fact that it happened. What I do remember, quite vividly, is sitting in my class at school the next day (in my regular seat, near the back of the room), understanding that I had something called ‘Asperger’s syndrome’. I remember being pleased with the knowledge, and a sense that life as a whole just made more sense.
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While I can only really speak for myself, I’m sure that ‘the moment’ is common among people with any sort of diagnosis. I’ve observed it in others – family members being diagnosed with dyslexia and having to adjust; friends getting diagnoses of neurodivergence confirming what they’ve confidently known for years. Whether a person is totally blindsided, or sees it coming from a mile away, it feels like a Copernican revolution. Something about your sense of self has changed. Life post-diagnosis often feels different to life pre-diagnosis.
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Now, to clarify: I don’t doubt that I had a before-and-after, same as anyone else. Certainly, my mum attests as much – she says that I was an unhappy child, but that understanding my diagnosis changed things. The thing is, I only really remember the after. While friends and family members have received diagnoses in later life, my memory of aforementioned memory of gleefully knowing I have Asperger’s is the oldest intense feeling I can remember.
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So, functionally armed with a diagnosis from the get-go, what did I do?
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For the most part, I lived my life, comfortable in the knowledge of my own, and others’, perception of me. But, of course, there were times when I became curious, or uncertain. I might read a post online that would take me down a rabbit hole, or go through something in real life that would make conscious of being seen as odd or different in some way. Sometimes I would just sit down and think, “what does my diagnosis actually mean?” And when these conscious moments happened, I turned to something else in my life that has been a constant for as long as I can remember:
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Writing.
Pablo Picasso, Claude Writing, 1951.
I have written stories throughout my life, and I’m pretty sure that it’s something I would do independent of any diagnosis. Writing is an innate passion – something I do because I can’t not do it. I love exploring characters, and creating stories, and engaging with narratives, and I’ve been publishing my fiction online since I was about 11 years old. However, this compulsion and passion for writing begins and ends with fiction. While I’m perfectly adept at researching and writing notes, I’ve never gone out of my way to do a piece of analytical non-fiction writing for its own sake.
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Except, that is, when it comes to writing about being on the autism spectrum.
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Inspired by my diagnosis, and a desire for self-reflection and self-understanding, I have – at different points in my life – sat down and done a deep-dive research binge on what it means to be on the spectrum. These findings have been compiled into word documents exploring different aspects of autistic life. These documents are varied, given the different points in my life at which they were written, but they also have a lot in common. Each one is written as though I am talking to an unseen audience, pressing upon them the importance of the information I am conveying. In them, I am learning about myself; through them, I am also trying to teach others about myself.
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The first document I wrote was called ‘Notes on Asperger’s’, written around 2016. It is written with an underlying tone of righteous indignation and certainty; it is determined to grab its audience by the collar and shake them, telling them ‘this is what it means to be me’. The first paragraphs are dedicated solely to debunking common misconceptions of autism, ending with an impassioned plea: “Please, PLEASE, PLEASE never suggest that people with Asperger’s Syndrome have no emotion, and lack empathy… This is about as far from the truth as you can get.”
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In hindsight, a lot of this document is just parroted information from sources of varying reliability – anything from online articles to the comments in their threads. Certainly, some of the information I seemed so confident repeating at the time seems dubious now. (Surely people with Asperger’s Syndrome don’t actually lack the xenophobic and prejudicial instincts ingrained in mammalian brains?) That being said, there’s a lot of information that holds up when I scrutinise it with my current knowledge, including pretty reasonable-for-my-age analyses of both autistic meltdowns and the concept of overstimulation.
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Die Röntgentechnik - Lehrbuch für Ärzte und Studierende (1906).
More importantly, though, it’s clear that ‘Notes on Asperger’s’ was both a method of expression and a mode of exploration. I wanted to know what it meant to have the diagnosis I did, and the research that went into this writing informed my developing understanding. I was vindicated in so much of what I already knew about myself (I liked to be alone; I had a very keen sense of secondhand embarrassment; I struggled with eye contact). Not only that, but a lot of other aspects of myself that I hadn’t thought that much about were recontextualised. For example, through this writing I realised that my having a few consistent close friends in favour of large and ever-changing friend groups, and my difficulties with lying (and the contexts in which I did feel comfortable lying), were both linked to my diagnosis.
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Once I had all that information, I set about formatting into a large word document, organising everything that I found into categories of different behaviour types, and laying it out like some kind of lecture. Now I had found out and organised so much information, I wanted to share it – and share it I did! If memory serves me correctly, I sent it to several people at the time. In this way, my writing – almost always my vehicle of escapism and a way to have fun in fictional worlds – became a much more close-to-home method of self-expression, as well as a way for me to communicate what my diagnosis meant to other people.
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My second foray into researching and writing about my diagnosis came around about three years later. This much heftier piece – just shy of 9,000 words in length – is called ‘Notes on Autism’, and comes complete with citations and an academic-style extended title. It is, fundamentally, a redux edition of ‘Notes on Asperger’s’, and there are a lot of similarities between the two documents. (Most notably, how their paragraphs are formatted and categorised.) However, there are also a lot of differences, through which I can track when my opinions on my diagnosis might have changed, or when I might have learnt new information.
Perhaps the most telling of these changes is the fact that this document talks about ‘Autism’ and not ‘Asperger’s’. In the original ‘Notes on Asperger’s’, there is a paragraph near the end where I vehemently protest the dropping of Asperger’s Syndrome as a diagnosis in the DSMV. (Specifically, I refer to it as “bollocks” because I don’t think that grouping the types of autism together “[is] going to do anyone any favours”.) However, three years later, while the matter is never directly addressed, the follow-up document is called ‘Notes on Autism’, and contains minimal references to Asperger’s. I can’t speak to what my thought process might have been – how and when, exactly, did I change my mind? – but it’s clear that I did change my mind, illustrating a shift in my self-reflection.
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Again, also, there are areas where the research I did for the sake of this led to me learning something new.
'In this way, my writing – almost always my vehicle of escapism and a way to have fun in fictional worlds – became a much more close-to-home method of self-expression, as well as a way for me to communicate what my diagnosis meant to other people.'
C. L. Scholes Type Writing Machine, 1896.
Once again, I learnt a great many new things during the process of my research. Towards the end of ‘Notes on Autism’, there is a segment called “Enough sugar-coating”, which talks about the reduced life expectancies of autistic people in relation to neurotypicals. Digging through the NHS website and research by the Karolinska Institutet, I uncovered the grim statistic that the average life expectancy for someone on the spectrum is, at minimum, fourteen years shorter than that of non-autistic people. This statistic is dour, as far as bookends go, but it is clear that this was an aspect of life on the spectrum that I was anxious to express.
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Three years later, I wrote my third and most recent document of this type: ‘Medicine’s English Spring: How harmful medical and social treatment of ASD indites the diagnostic system’. From the title alone, it’s obvious that this piece is more formal than the others. (There is a much clearer point of focus and there’s no mention of ‘notes’ anywhere in the title.) That is because this was not just something I wrote for my own sake; it was also the final dissertation I did for my history BA.
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Following up what are essentially two collections of organised rambling with an academic paper was not something I had planned to do from the get-go. I picked twentieth-century healthcare in the U.S. and UK as my dissertation model because it felt like a relevant and generally compelling topic to study during the Covid Pandemic; not because of my own diagnostic status. When I first had to identify a topic for my dissertation, I struggled, because I’d never really studied medical history before and didn’t have a lot of prior knowledge of the subject. But then, I had a kind of ‘eureka’ moment when I realised that I already had some experience of writing about something medical. Something with a relatively recent history; something about which I already had two large collections of notes; something very close to my heart.
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And, just like that, I had the crux of my thesis. Just like that, the defining academic document of my life came about as a direct result not only of the diagnosis that I have carried with me for so long, but also the previous pieces of writing that I did when I was a boy trying to discover what it meant to be who he was.
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Of my dissertation being a ‘legacy’ to what I had earlier written about my own diagnosis, there can be no doubt. My first idea for it was to write a straightforward general history of autism as a medical diagnosis with little additional commentary. However, I quickly ran into problems with this idea. The first was situational – a dissertation, generally speaking, needs to be more specific than that. The second was historiographical – until autism started showing up in the medical records following its ‘discovery’ in the 1930s, it’s basically impossible to track across history because of how differently it was treated within a range of contexts and the variation with which it manifests in people. So, I had to change tack and find a more specific point of focus to hone in on.
'I uncovered the grim statistic that the average life expectancy for someone on the spectrum is, at minimum, fourteen years shorter than that of non-autistic people.'
Medical diagnosis for the student and practitioner, 1822.
The final version of the dissertation represents an exploration of the diagnostic system through the lens of autism, examining how the disorder’s diagnostic history can be used to study and criticize the system of diagnosis as a whole. Even though I attempted to be objective in my study, however, I can read back through the writing now and find a certain level of self-indulgent exploration of my own diagnosis. The paper is comprised of three main segments; of these, two are spent outlining the history of autism as a diagnosis, as well as how poorly people with the diagnosis have been treated as a result of medical and social misinterpretation, as well as misguided attempts at cures. These sections do tie into the wider questions I ask about the nature of the diagnostic system, but I can see now that the ASD-specific material contains some of the same passion and indignation, and desire for neurotypical people to understand what ASD is, that is present in my earlier writing.
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This directed attempt to educate is clearest in the areas within the dissertation where more time that strictly necessary is spent explaining the wrongs done to autistic people. During these sections, my engagement with the academic question at hand about the wider diagnostic system falls to the wayside. For instance, I don’t think I needed to spend as much time as I did going over the methodology of Ole Ivor Lovaas and his Applied Behavioural Analysis (ABA), but what I learned about Lovaas during my research – the way he believed autistic children were ‘not people in the psychological sense’, and how he dedicated entire step-by-step programs to the suppression of physical habits characteristic of autism – incensed me enough that I dedicated paragraphs of my work to explaining and disparaging these ideas. How could I not?
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I sometimes wonder whether I might have achieved a higher grade for my dissertation if I’d managed to focus more objectively on the academic question throughout, and hadn’t gotten distracted by my indignation. I don’t worry about it; I was, and am, very happy with the marks that I got, thank you very much. But I do wonder.
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There is, however, something that I am sure about, even now as I look back over my dissertation: my borderline-detours and my focus on matters relevant solely to ASD were necessary to me. In that moment in time, I was finding out not just more about myself, but about how history has treated people like me. As such, that dissertation is now something I can look back on with more appreciation than I otherwise might have. The personal growth and understanding I experienced while writing it is worth more to me, I think, than any amount of sticking to what I was technically supposed to be doing.
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It’s a good feeling, to regret neither the way I worked nor what my work produced.
'The personal growth and understanding I experienced while writing it is worth more to me, I think, than any amount of sticking to what I was technically supposed to be doing.'
James Ensor, Man Writing, 1880-1883.
So there you have it! Three ‘generations’ of notes on my own diagnosis, representing times I ventured outside of my fiction-shaped comfort zone, forced myself away from my own contentment with what my diagnosis meant, and learned something. And then, once I learnt the something in question, I got it written down so that other people could learn it too.
In truth, each ‘generation’ of notes has meant the world to me. Each time that my writing and my diagnosis has converged in this way, I come out of the experience with changed perspectives; some deeper understanding of who I am, and what I feel that I am. And, each time it’s happened, I’m left with something that I can show to other people – my self-exploration turned into self-expression. I’ve shown these notes to people every time and let them get spread around within my circles. Every once in a while, I’ll hear back from someone about how much they enjoyed reading what I wrote, or how they hadn’t thought about the points that I’ve raised before. It’s everything a writer could want, every time.
I could probably leave these observations there. However, given the precedent set by the previous times my writing and my diagnosis have intertwined, I think there’s one more question I’d like to ask; one more thing I’d like to write about. Namely: what have I learnt, writing this piece? What have I learned, and what do I now hope to pass on?
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Well.
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At the beginning of this reflection, I mentioned a ‘moment’ in regards to a diagnosis, in which a person’s perception of who they are and how they fit into the world can change. The thing is, I don’t think that the initial moment of diagnosis is the only ‘moment’ a person can experience. Far from it. What the writing I have done in relation to my own diagnosis has taught me is that having a diagnosis is more than just account for the before-and-after. It is – to risk being cliched – a journey, with the potential for many seminal moments. Stumbling across more information about yourself; learning about some change in medical criteria that affects your diagnosis; seeing some small piece of yourself in someone else that resonates in a way you never imagined anything could. These are all ‘moments’ in their own right.
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More than that, I’d argue that those ‘moments’ are not things that just happen to us, entirely independent of our own initiative. They can be just that, of course! And, in many cases, that’s simply what they are. But that’s not the extent of them. I think that they’re also things that we can create for ourselves, from our own initiative. And I think that’s important, because getting a diagnosis can be a scary thing. Answers be damned – what isn’t scary about, potentially, the foundations of your whole world changing? (At the very least, I’d expect it to prompt a certain amount of existential angst!)
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How I’ve dealt with that existentialism is through writing. It has become, for me, a vehicle by which I’ve been able to find those moments. Through writing, I’ve undergone self-discovery and found self-realisation. I’ve been able to learn more about my own diagnosis, as well as reevaluate the way it intertwines with my identity. Most crucially, through writing, I’ve also been able to communicate my thoughts and findings with others.
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So. As someone who has had a diagnosis for as long as he can remember, here’s my advice to all of you – especially to the freshly diagnosed, who are surely experience their own ‘moment’ right now.
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Find your vehicle. Make your own moments. In the face of something that could define or redefine your whole life, never forget the power of your own agency. For me, that’s been my writing. For you, it could be anything.
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Diagnoses may define us to the world, but it is us who have the power to define our diagnoses to ourselves.
'Find your vehicle. Make your own moments. In the face of something that could define or redefine your whole life, never forget the power of your own agency. '
Pablo Picasso, Garçon à la pipe, 1905.
About Harold Cooper
Harold Cooper (22, ASD + mild dyspraxia) is a long-time fiction writer with aspirations of publication. He has a degree in history, and a year’s experience as a Learning Support Assistant. You can follow him on his Twitter and Tumblr accounts for updates on his current project, ‘Finding Atlas’ (name pending); a novel about a 20-something junior bureaucrat and a 50-something vigilante solving a political murder.