Living with Asperger’s

[This essay is rough and unedited, and thus a work in progress. If in the future I find the motivation, I will add to the account and describe more of what it is like for me living with Asperger’s].

R.C. Smith

Some describe the experience of Asperger’s as like being an English person suddenly catapulted into Japan (with no prior knowledge of the culture). This rings very true. Having a high functioning form of Asperger’s Syndrome, I would begin a personal account by describing how it is as though the entire human world is one large foreign, alien social landscape. From a purely systems perspective, some things are intelligible. General economics, for example. But the cultural significations and biases in relation to economics, often not based on evidence or logic, or even the rationality of its own systems, is difficult to comprehend.

This is because, I struggle to understand cultural meanings. It is to exist, as it has been explained to me, in a way in which one’s brain just doesn’t function in the same way so as to orientate to many of the “codes” or behavioural routines that normalize in the neutron-typical world. The seemingly almost innate ability of others to comprehend how people normally see life and organise their lives is inaccessible, or that is at least one description I have been offered. That is why I exist according to a profound difficulty to compute things like why daily life is the way it is for most individuals or why people behave as they do. Why do people celebrate birthdays and Christmas? Why do people work the jobs they do? How do they do it? What motivates daily behaviour and routine? How do people make decisions or direct the future course of their lives? Or, why do people seem to be so freely openly engaged in life, passing in one moment from the next, while I seem to exist in this bubble from afar? It’s a world of unknowns and whys, with lots of arbitrary and meaningless rules that make zero sense.

In fact, I understand very little about human relations, psychology, emotions, and behaviour outside of theory and textbooks. That could be expanded more broadly to the entire human social world, or my parents and my childhood, or even about what it is like for other people to experience me, removing their descriptions and accounts of which I have only a little comprehension. My world, since I was a child, has been one of theory. In working with psychologists, I have been described as many things: “gifted”, “conceptual”, “mentally active”, “mainly consisting of internal life”. But maybe one of the most prized traits concerns how, when I was diagnosed with Asperger’s, I learned when growing as a child to be perceptive. The way it was explained made it sound originally like a purely survival-based mechanism.  I quickly noticed that the smart person in class was often the one that was bullied, or that sports is a central socialisation hub for most people – a channel for acceptance. It was also the only way to relate with my father. And thus, I studied it profusely, much like everything else.

One of my first notable scientific experiences occurred when I was no more than two or three years old. I remember observing dust particles as they passed through beams of sunlight, curious about what I perceived in terms of their frantic and irregular patterns. What is this microworld of life? Today, I might explain this by invoking Brownian motion. Likewise, if someone is crying I know now that it probably equates to sadness, having studied and memorized the poster of faces linked with correlating emotions, and thus I can reference books I have read on what a response might commonly entail. This applies to almost everything – every observation follows a reference and in the absence of a reference, I study.

For these reasons, I can say that the one and only constant thread of direction in my life that I truly understand is predicated on following my studies. I learn about people in books and theory, and sometimes also through my own sociological studies, occasionally aided by behavioural experiments at home. It is not uncommon for each moment in life to be characterised by 12 simultaneous thoughts, pulling in different detailed directions based on the references that might be cited. There are times when I have been caught working on a physics problem whilst writing an essay on some obscure history. This is the daily pattern.  I write based on what I observe in the context of theory and textbooks, which aids the process of obtaining some sense of cognizance. But the act of writing itself is not easy. It does not come naturally, and it is something that I have had to work on for many years, where even to this day I still don’t understand what is “good writing” or what it means to write in certain formats.

But writing takes on a new meaning, I think, in world which for me is one of almost total arbitrariness and meaninglessness. Writing has become an effective communicative tool I have learned to equip. It has also become a space, in which I might document ideas or organise patterns of thought into systems which might later be published as an essay or formal paper.

***

Admittedly, Asperger’s is not one of my special interests. It is a field in which I do not consider myself an expert. But from the time I was diagnosed I have studied it extensively, working with psychologists, and combining all of the research and clinical descriptions into one framework that might further aid my understanding of myself. I can write about it and I do so out of encouragement by others. But I also only do so from theory and that is why there is a discernible limit, including when it comes to my own objectivity and perceptibility in relation to my personal patterns of behaviour. Hence, whatever descriptions follow about myself as a person with Asperger’s are largely dependent on the accounts of others.

What I can say is that I am aware to a certain extent that I struggle with numerous diagnosed obsessive tendencies and behavioural patterns (such as in the observed tendency that if I can’t solve something, I will sit until I have it solved, and that sometimes means that I do nothing else for 5, 10, 24 hours or more). I also have memorization and sensory sensitivities, where I can remember everything in picture detail, but I also struggle with hypersensitivity to sensory input in addition to the overwhelmingness of mental pictures. It has resulted in mental breakdowns, and, unashamedly, a 24-hour stint in a psychological ward at a time in which life for me had no stability. I have come to understand, through many years, that without structure I cannot cope.

As for the actual developmental disorder, which is placed on the autistic spectrum, I’ve read about and heard stories of people with Asperger’s who are political activists, scientists, professional athletes, artists, musicians, comedians or public performers, directors of NGO’s or business leaders, policy strategists and the list goes on. The extent in which people with Asperger’s achieve such magnificent positions seems incomprehensible to me, but that is likely to my own limits when it comes to daily functioning. I have also read of many others that are homeless or barely coping and able function in a strange neuro-typical world. Additionally, there is also the reality that the psychology for each individual can be so widely varied. Similar to a neuro-typical person, individual neurosis can be diverse and also have an impact.  This is something that is not always emphasised or engaged deeply in the textbooks.

For some individuals who also have a high functioning form of Asperger’s, they might be more able to navigate the social world by abiding by the rules even without fully understanding them. I think of it conceptually as mimesis. Whereas others – and myself too – struggle to accept, navigate or adapt to what doesn’t make sense or what is arbitrary, even with one’s best efforts. Indeed, one of the common descriptions from and about people with Asperger’s follows the account of learning how to adapt to try to blend into the crowd: how fellow youth slouch with hands in their pockets, or wear hoodies, or how they wear their rucksack with one strap hanging down, or how those around one talk or how they smile.

There are many common stories in this case, where one will try to fit in and pretend to play by the rules: rent a home, take on bills, work a job. One story I might share refers to when I was 2 or 3 years of age. It was possibly my first concise behavioural experiment, the theoretical basis of which I have since studies. During playtime, otherwise known as morning recess, I would often sit alone with my back against the exterior wall of the classroom. Situated underneath the widow, I would watch the other children play, trying to understand not so much the physiology of their movement, with each swing on the monkey bars – my focus was on their interaction with each other. Sometimes I would be invited to play, and almost always on the periphery of the group, I could mimic the behaviour to an acceptable degree. It was enough to blend, but it required concerted effort in the study of physical forms.

Things like physical movement, posture, and “cool” behaviourisms – one hand in the pocket, or, as I said, one strap of the rucksack hanging from a shoulder, were points of mental note. Mimicking plays a crucial role. Sports was a popular pastime amongst my peers, a form of social communication and collectivisation. To blend I would have to learn. But at this period, it was basic interaction I was most trying to figure out. And to this end, the minute details of my first real scientific observation (in a very child-like way), remains as clear in mind as if at the time I were already keeping written logs.

It stems initially from a symptom. To help ease the constant sense of overwhelmingness I would chew the sleeves of my clothes until they were shredded. Alternatively, I would also jitter my legs profusely or twitch my mouth (something I still do). Chewing gum helped channel this tendency, as it was another way to release some of the nervous and anxious energy. Thus, it also became routine that every day I went to school with bubble gum in my pockets. If I didn’t have bubble gum, the event of attending class was a major problem, because I learned that the chewing and grinding of my jaw would sometimes substitute for other less acceptable (and noticeable and unmaskable) actions. Otherwise, I feared more violent twitching or less subtle behaviours would explode during class. Quickly, other children learned that I would have bubble gum filling my pockets. And I noticed with one person in particular, that if I were to maintain the potential future prospect of sharing a piece, she would sit with me during playtime. Thus, it turned out, I discovered the conditions of my first behavioural and minor sociological experiment. Bubble gum meant less exclusion.

With personal stories aside, I am always amazed when I read about fellow Aspie’s. In some cases, people manage and function to a remarkable degree. Others, in time, find life inevitably collapses around them. It is similar, in a sense, to how some people with Asperger’s are described as socialites and incredibly extroverted, well organised and self-governing. They may also not be as overburdened with other forms of neurosis (resulting from social exclusion, bullying, or more personal experiences). Others are noted as being the opposite.

But as a whole, the common narrative seems to be one of significant struggle: from bullying as a youth and the experience of endless failed social attempts to coping with social exclusion and trying to manage what is expected of adult life. To put things into context: according to the latest figures that I am aware of, it was estimated that suicide rates among the Asperger’s community is 10 times more than average. While majority of people (about 80% the last I checked) struggle to hold down a full-time job or be independent, many with high functions forms, the same as that which I was diagnosed, struggle with depression, PTSD, various anxiety disorders, alcoholism, drug abuse and so on. The list is extensive.

The finer point is as practical as it is clinical and theoretical: namely, in addition to the particular individual struggles with the actual syndrome, most psychologists and clinicians seem to suggest that there are also always at least two or three other dimensions (typically neurosis) that complicate it. The psychology behind this is simple: some people with Asperger’s experience much less traumatic upbringings than others, and thus the emotional complexities vary.

It is an unfortunate reality that there are many people with Asperger’s syndrome who are, or become, abandoned with little or no support. “Rejects”, “retards”, socially excluded – in a word, misunderstood. There are many who, not so dissimilar to myself, struggle to function and to cope with day to day life, finding themselves in care homes or the equivalent, especially if they lack a network of support that usually begins with a stable and functional family.

I recently read a story about a post-doctoral student who, upon leaving the structure of university, found himself homeless. Finding it difficult to understand why everything collapsed, it was through diagnosis and the intervention and help of others he was able to find support and stabilize. This story is also common to the biographical details of the present author. It comes from the knowledge, now, one’s entire adult life up to a certain point was a pattern of collapse, where outside of a structure, one could not function or even just simply exist according to the standards of a modern neurotypical person. I have also learned of the stories of other people who either continue to live at home with their parents, and will likely do so for much of their lives, or are in and out of hostiles if not permanently on the streets.

I can say to whatever extent that I live with some understanding that I am not far from such circumstances. It is a central requirement, I have grown to learn, that I must live with someone who can manage many of the responsibilities common to day to day living. Absent a stable and functional family environment, I understand that I was lucky to have had people offer me their homes at different times when growing up. I have been fortunate to have been supported by these individuals and families, who intervened to fill the gap and take on the responsibilities abandoned by my parents. I have read many stories were others were not so fortunate.

***

As a whole, it is impossible to summarize the difficulties of living with Asperger’s. In that each individual is unique, there are universals that are shared such that Asperger’s Syndrome follows a certain definition. For myself, living with Asperger’s is difficult. Over the last several years, my partner and I have had our own home and have created an environment that is positive, healthy and supportive. I have managed to arrange my space and organise my environment that works for me and my needs. In addition to maintaining financial independence, over the past several years I have also successfully developed my academic career. Now on the long road to a PhD in theoretical physics, university is the next big step in my life.

As a young adult, it was around my 20th birthday that I realized that my only pathway was to unwaveringly dedicate myself to the intellectual profession, both in science and in philosophy. All other pathways were untenable and unimaginable. Dedicating myself to study was and continues to be the only thing that ultimately make sense, as a constant, over the long term. Many other people with Asperger’s will often say the same thing: ‘you must recognise your strengths, those things you excel at, and utilize them’.  In a very pragmatic sense, I recognised I have a natural ability to excel intellectually, whether at mathematics or physics or generally. I quickly learned that I was a systematic and scholarly reader. I learned that I could absorb a new language in the span of a month, or a new mathematical concept with only one self-lesson, and that I could read at a pace well beyond that of my peers. In addition to being able to memorize the most minute details, these skills aided my deeper interest and drive to understand the world (social and natural).

There are entire lists of struggles, routines, diagnostic observations and reports, not least when it comes to the lists and lists of diagnostic descriptions and accounts. There are also many practical daily things that might be described or expanded on, from understanding human emotions and social interaction to constantly struggling to understand how to function in life. I am still learning a lot about myself in this regard. While I have been encouraged to write about these things, perhaps I will write more here in the future in effort to describe more about me and my daily experience.