How Special Interests have been my Therapy

This is a deeply personal piece and I’m writing it because I believe that it will provide a unique glimpse into the inner workings of the autistic mind. I do not for a single moment wish for this piece to be seen as an example of how all autistic minds function: it is not. Everybody’s experiences are different, a fact which plays a key part in determining how (and why) we respond to the world and cope with our struggles in the way that we do, whether we are autistic or non-autistic. That said, I have observed that a number of other autistic people employ similar coping strategies to the ones I am going to talk about here.

This, then, for all intents and purposes, is a close look at some of the special interests* that have played important roles in my development over the course of the last few years and in some cases over the period of my entire life. I chose to highlight only a few key examples in order to create a piece that can be read quite quickly. All the interests highlighted are entertainment based (i.e. books, films, music and other media), but special interests may take many forms. Some of the things I have fixated on in the past (when much younger) that are not explored in detail here include elephants, clocks, birds, prehistoric life and cartoons such as Wacky Races, to name just a few.

In each case I will be focusing less on the interest itself and more upon why it has been significant for me, and how it has helped me cope with living in a predominantly non-autistic world.

I hope that it is interesting. I have written many other pieces that give a fuller picture of the nature of my personal struggles as a whole, dealing with anxiety and depression, and so on. You may wish to look at those for further information on how the autistic mind responds to emotional upheaval.

So, without further ado, here we go:

Middle-earth

If there is any one interest that has undeniably shaped my existence more than any other, it’s my interest in the world of Middle-earth created by J.R.R. Tolkien. For me, this love affair began with my father reading the books to me as a child. It quickly took on new life with the release of the Peter Jackson movies. Everything about this world fascinated me and seemed even at that tender age to be so utterly superior to the world I was living in. As a child, it formed the basis for most of the games I played and I made a couple of close friends (one of whom also autistic) who shared my passion for this world. I had, at long last, found a subject that I truly loved and could become knowledgeable about-and I did. Being an expert, I felt a reluctance to move away from my field and try new things. I continued to play the same games long after other children had moved on. It became an area of expertise that provided much-needed solace in what was a happy childhood, albeit sometimes a confusing one. My desire to attain more knowledge at such a young age (and to be seen as a knowledgeable individual in the eyes of other people) is likely why I latched onto the character of Gandalf in particular.

As I grew older the love for Middle-earth never died down: the flame remained bright, perhaps because it needed to. The pleasant land of the hobbits provided an escape for me from the bullying I was suffering in my adolescent years. The one close friend I had at school at that time was also considered a bit of an outcast and bullied by others. He enjoyed strategy board games and persuaded me to start playing them. This was another form of escape-I have never been good at maths, but some autistic people find it to be an easy subject, perhaps due to the fact that it is based on a set of clearly defined rules. This is the same with most strategy games: and, of course, the game my friend and I played was based around The Lord of the Rings.

Middle-earth has always been there to provide comfort in times of distress. I read the books regularly, often return to the films and still continue to play The Lord of the Rings Online over ten years after its release, it being perhaps the closest thing currently existing to a virtual reality experience in Middle-earth. It also provides the opportunity to roleplay as a character. I have discussed in previous posts how acting has helped me and made arguments as to why it might be a viable career option for some individuals on the spectrum. For many autistic people who might have endured years of rejection from society, the notion of being somebody else or an idealised version of oneself can be quite comforting at times.

Rush and ELO

Pre-17 years of age, my interest in music was based almost exclusively around film soundtracks, which is a fascinating area of study in and of itself. I arrived late to the realm of popular music, the first album I ever bought being Power Windows by the band Rush.

This was a very appropriate band for me to become attached to for many reasons. Rush’s music is, to put it mildly, out of the ordinary. The lyrics are unusually philosophical for rock songs, and the sheer musicianship behind all of their work is something that I as a soundtrack lover appreciated. Given the nature of the music, Rush fans tend to fit the stereotype of ‘social outcast’ pretty darn well. I certainly count myself among that number.

Given the current climate, it is perhaps little wonder that old interests that once provided great comfort to me have resurfaced. Having quickly exhausted my reading and watch lists during lockdown, I decided that I wanted to listen to all of Rush’s studio albums in order, something I’d never found time to do before. This sparked a huge resurgence in my love for the band which has provided much-needed support during this frightening period. At this current moment in time, I would estimate that at least 40% of the thoughts I have upon any given day are Rush related, and most of the music I listen to is Rush. Better to fill my head with the music of a prog rock band I dearly love than, say, Death, Misery, and Stupidity…otherwise known as The Saga of the Human Race, 2020 Revised Edition.

Another factor that played a part in why the band returned to the forefront of my mind was the tragic death of drummer-lyricist Neil Peart in January this year. Neil was a man who I related to a great deal: often seen as a bit of a curmudgeon, he was a fiercely intelligent and sensitive individual (As evident in his lyrics) who loved his fans but found the nature of fame difficult to deal with as an introvert. One of his most famous songs, ‘Limelight’, explores this very issue. He also suffered a great deal of trauma in the late 1990s after losing both his daughter and wife within the space of a year, something he dealt with by retreating for a prolonged period, as I myself have often done when overwhelmed (albeit in much less serious circumstances).

The other band that played a very large part in my development was ELO, otherwise known as Electric Light Orchestra, who I discovered quite by accident while watching a televised Glastonbury concert with the family. During a period of great anxiety in my life (when I was struggling to pass my driving test), the upbeat nature of the music was exactly what I needed. Jeff Lynne is another shy, retiring individual to whom I relate in many ways.

Star Wars

In terms of the big interests, Star Wars is one that has dominated my life, eclipsed only by The Lord of the Rings. In fact, the former was introduced to me in the hopes that it might divert my attention (briefly) from the latter!

There is so much escapism to be found in Star Wars and the almost endless stream of movies, video games and books that have been created under its label since the late 1970s. On the surface, the films are just enjoyable action movies for children: but the many hordes of Star Wars fans, some of them as ancient as Ben Kenobi, prove that there is something about these films that has a deep significance beyond its flashy exterior. The themes of the story touch us because they relate to how we as individuals face and overcome our struggles.

I want to talk about one particular element of Star Wars rather than the series as a whole, firstly because many of the reasons I like this series are similar to the ones I have already discussed for Middle-earth, and secondly because this one element has had a huge impact on me over the course of the past couple of years.

To fixate over a subject is part of my very nature. I simply can’t help it. Imagine being me in 2017, having just graduated university and ready to walk out into the wider world of work…only to discover the mountain of obstacles that lay between me and healthy, sustained full-time employment as an autistic individual. There is a reason why only 16% of us are in full-time employment. On top of that, I had just lost my best friend: my Labrador Max.

Suffice to say, I was in a bad place. In hindsight I realise I was suffering from a newly acquired state of depression that still affects me to this day, as I began to realise just how much more I would have to struggle to get by in the world than the average human being. But I had one thing to look forward to because, even if nothing else in life was going my way, I was looking forward to seeing my hero Luke Skywalker, a symbol of hope and relentless optimism in the face of oppression, take to the screen again. I thought it might bring me some much needed enthusiasm. Crazy, perhaps, to place so much stock in a movie, but I did it nonetheless.

Then I saw the film.

To say I felt crushed would be an understatement. I had been looking forward to this film, mostly because of Luke, every day for the past two years. The last thing I had expected to see was my childhood hero reduced to a bitter, hopeless and frightened old man who had run away from his problems to die alone. Initially I was deeply upset by this as many other Star Wars fans were. After a little thought, however, the portrayal touched me because I saw a large portion of myself in Luke. I felt like the film was speaking to me on a personal level. It related directly to how much I had changed for the worse over the period of only a few months. I understood why Luke had responded to his problems by hiding away and seeking solitude. I myself have always done the same when overwhelmed. For me it’s a necessary survival mechanism.

It took me a long time to fully accept this portrayal, largely because of how excited I had been for the film during a dark time in my life and because of how utterly let down (and yet moved) I had been by it. I often think about the older version of Luke in moments of darkness and it gives me some small comfort to know that even my greatest heroes are human beings capable of falling so spectacularly.

The Big Lebowski

The Big Lebowski is an example of how completely and utterly consuming a special interest can become.

Between the period of early 2018 to late 2019 I watched the movie over a hundred times, had long hair, wore my Lebowski sweater at every opportunity, and drank many White Russian cocktails. This was because the film gave my life some meaning, even if I myself didn’t truly understand what that meaning was.

I suppose that the film itself, being a bizarre concoction of storylines, themes and characters that make little to no sense at all, was exactly what I needed during that time. The film’s enduring legacy is due almost entirely to its primary protagonist, an aging hippie of an anti-hero who calls himself ‘The Dude’. He is unemployed, lives alone in a tiny apartment, does very little with his life apart from drinking cocktails and bowling, and is generally deemed to be a total loser in the eyes of society; yet he has a wonderfully calm nature, uncaring but gentle. It might be described as a ‘live and let live’ attitude.

It was the complete antithesis of me as a person at that point in time. In truth, I was more like The Dude’s permanently angry friend and foil in the movie, Walter. Anxiety and uncertainty about my future was making life very difficult. It was affecting not only me but also those around me. The film actually made me realise that it is perfectly okay to live in your own little bubble if you so choose. I still take many things far too seriously, but whenever The Big Lebowski comes to mind I begin to feel just a little more at peace.

The movie famously ends with the line: ‘The Dude abides’, ultimately signifying that, no matter what slings and arrows might come his way, The Dude will continue to be himself and not allow the chaotic storm of life to affect him: and to quote the film’s narrator, ‘I take comfort in that’.

What It All Boils Down To

By now I hope that you are starting to understand how important special interests can be. In my case you can probably notice a theme emerging: many of my interests revolve around escapism, all whilst being strangely relevant to myself and my real-life circumstances.

If you have read this far, I hope you’ve found this to be an interesting piece. I hope it has not been too much of a ramble. Talking about my own interests felt somewhat self-indulgent, but it was done with good intentions, in the hope that others might learn a little and/or relate to what is written. One thing is certain: all of these fixations that I have described have been shaped by my being on the autistic spectrum. It was only recently that I acknowledged exactly how important my special interests were and are to me in daily life. They are actually as important to me as eating and sleeping are. My world as I know it would not exist without them.

Luckily in my case, special interests are not my only form of therapy. I am lucky enough not only to have a supportive family and circle of friends, but also the love of two wonderful dogs.

Peace out folks. All the very best.

*Special interests are characterised by repetitive behavioural patterns focused around a single topic. This highly obsessive and often routine-based activity may cause the individual to follow a subject intensely, to the point where other daily activities might be excluded from their routine, with almost every other subject seeming inconsequential to the individual. The obscurity of the topic in question may vary and the behaviour might not necessarily have obvious logical reasoning behind it, depending on the individual and the nature of the interest.

Dealing with change: an autistic person’s perspective.

Change is inevitable. It is a part of life; but very often it can present tremendous difficulties. This is the case regardless of whether a person is neurodivergent or otherwise.

Very little in life turns out exactly as we initially hope for or expect. Even the best-laid plans of mice and men often go awry, as a famous poet once pointed out. You can make arrangements for an event long in advance, only for a last-minute occurrence to change the game entirely. Particularly when you had been excited about something playing out in a certain way, it can be a real challenge to let go and accept the new reality of the situation, adapting to the circumstances. For many of us, this kind of last-minute change can be shrugged off as mere happenstance as we move on with our lives, perhaps laughing about how wrong we were or what a silly misjudgement we had made.

On a scientific level, going back to our genetic roots, we are naturally equipped to deal with such changes and to improvise in the moment. Our brains are wired to react in a certain way when a dangerous predator appears on the horizon. To be precise: we run and hide. This ability to improvise has allowed us to not only survive but to establish ourselves as a race quite unlike other animals on earth. We learn to place more emphasis on direct threats and less emphasis on negative changes that are ultimately more inconsequential, such as having to deal with a car breaking down. Our survival instincts help us to carry on in the face of life-changing scenarios: they help us to fight illness, provide us with the strength to move on with our lives when our family members pass away and encourage us to procreate in order to continue the species.

However, if you are on the autistic spectrum, dealing with change on a daily basis can prove to be a struggle far beyond the difficulties neurotypical (non-autistic people) face. This is because there are so many other factors to consider, depending on the individual, their circumstances and how their autism affects them personally*. A key element here is Anxiety, and the relationship many autistic people have with Anxiety disorders. Whilst Anxiety and Depression can affect neurotypical people as well, a number of autistic people find that they are constant companions (more on Depression later).

The result of this is that many autistic people experience self-esteem issues following many years (or perhaps even a lifetime) of social rejection. They may also feel permanently exhausted after having to mask their autistic traits on a daily basis. It’s not always so easy for autistics to just to shrug off what may seem to others to be minute, casual changes. Even when we appear to be coping well on the outside, we may, in fact, be having a very different experience internally as our minds whir and our hearts race. Sometimes we do not immediately understand our own feelings and reactions to a given scenario. Many autistic people also live with a condition called Alexithymia, which affects our ability to process and relate to emotions, including our own.

In any situation involving other people, there are always multiple agendas to consider. When people cancel plans at the last minute, it may be very hard for us to understand why. Have we done something wrong that has offended them? Do they no longer like us? Is their any malicious intent behind their actions? Or it is really as simple as this being just an unfortunate happenstance? It is well-known that people often do not say what they mean or say what they feel. If somebody cancels a date or responds to an invitation with what appears to be a lack of interest, then they might either be hiding their true feelings in an attempt to not upset the other person, or they might be expecting the other person to pick up on their lack of unspoken interest. It may even be both of these things! But telling which is which as an autistic person may be nigh-on impossible. The intricacies of online communication further complicate this matter.

This is where Depression comes in. Many of us autistic people are quick to blame ourselves for what we see as our social deficiencies. We berate ourselves for not being able to read the signs or recognise the turning tables. No matter how hard we try to learn from our mistakes, the same scenarios seem to repeat themselves. Our mental health suffers as does our self-esteem.

I have found that it helps a great deal when you have time to prepare in advance for an upcoming change; however, this is unrealistic as the majority of changes that occur in daily life are unexpected. Autistic people’s responses to change might range from a person being unable to deal with even the slightest alteration to their daily routine without it causing a panic attack, whereas another individual might internalise their struggle only for their emotion to later manifest in the form of a large (and sometimes public) meltdown, where months of unaddressed emotion are released in one spectacular burst. Many of us like things set in stone and like to do things our way, in our time and manner, whether that be eating breakfast at precisely 8am every day or watching the same program religiously every night. We might choose to watch a movie in our leisure time that we have already seen countless times instead of trying something new because we know that we will always find solace and comfort in that activity.

Before I discuss my own experience, I want to mention the fact that, so far, this piece has focused primarily on negative change and a person’s reaction to it: there can also be positive change. Sometimes changes that seem negative at the time may be positive ones in the long-run and vice versa. I believe that, when we as autistic people are trying to make a positive change, or when a positive change is on the horizon, we may exhibit an incredible amount of passion and excitement in pursuit and anticipation of that change, bringing out the very best qualities in our autistic selves.

The last year has been full of dramatic alterations, affecting the way in which all of us are living our lives. It has shaken the very foundations of societal norms. In fact, we have actually seen a great deal of aversion to change from non-autistic people in positions of power who, desperate to get things up and running again in a way that resembles old normality, have made more than a few very questionable decisions. Neurotypicals may be more adaptable to change, but they can still be unwilling to make changes.

To many autistic people, the opportunity to isolate and social distance has been a welcome one in spite of the terrible situation that has accompanied it. However, many individuals who were already isolated in the first place have become even more so as a result of this pandemic, and the stress involved with living in such an uncertain world has taken its toll on all of us, myself included.

My life is currently on the brink of a great change for which I am very excited. It has been a long time coming and I’m hoping, touch-wood, that all turns out as planned. The promise of this change is keeping me going in a difficult time, but the pessimist in me is sometimes hard to silence. Everything in life is, of course, wrapped in a layer of uncertainty.

Last week presented me with a number of scenarios that brought out the best and worst of my autistic traits. On Wednesday last week, I cut off my long hair. I am both happy and unhappy about this, and the change is not going to feel normal to me for some time. On the one hand, it had become damaged enough that it needed to go, and I had prolonged cutting it off because of my (literal and mental) attachment to it. It had become part of my identity, in spite of whether anyone else liked or didn’t like it. For that reason alone it was perhaps worth letting it go to see what remained of the person beneath it, and though I will very likely grow it back at some point in future, I’m currently enjoying the lack of styling woes that accompany shorter hairstyles. Many autistic people have problems with haircuts and the experience of them. In my instance, I just like the hippie look. Shoot me, boho-haters.

The following day brought about a much bigger change to accompany the one I was dealing with: my little dog became ill. I’ve always felt a great deal of attachment to animals and like many autistic people find them easier to relate to than other humans. For my dog to become so unwell was a terrible shock and one that brought with it many emotions: uncertainty for his future and fear for his welfare, pure anger that something so bad could happen to such an innocent, young creature, and pure grief thinking about worst-case scenarios that might occur. Fortunately, it seems that my dog is in fact recovering well and is expected to live a full life, but these huge shifts in a short space of time affected me dramatically. I hope sharing them gives you a little insight into how some autistic minds react to change.

If you’ve stuck with me this far, let me end with this:

No, his mind is not for rent
To any god or government
Always hopeful, yet discontent
He knows changes aren’t permanent
But change is

-Rush, Tom Sawyer (1981)

*It’s always important to remember that autism is a spectrum, meaning that no two people will experience things in exactly the same way, even if there are sometimes similarities between two different people’s experiences.

“If only I’d said that!” A Study in Autistic Communication

The first time a girl ever made a pass at me, or at the very least the first time I was aware of it, I just sat there in silence smiling awkwardly. I had absolutely no idea how to appropriately respond.

This is just one of many situations in life when I have found myself at a loss for words. In the midst of the COVID-19 lockdown, many of my friends have expressed how desperately they miss the social aspects of pub drinking. Whilst I would normally be inclined to agree with them, my last experience in a pub a few months ago left me somewhat disenchanted. It was a situation in which I found myself having to talk to a number of strangers and my ability to effectively communicate failed me. Worse still, I was made to feel very inadequate by others as a result of this. I was lucky enough to be able to rely on a non-autistic friend for support, but I am nevertheless quite happy to stick to home drinking for the foreseeable future.

In any group setting that consists of more than 5 people I am likely to ‘shut down’ to a greater extent. There are a number of reasons as to why this is. Firstly, there is an element of Anxiety. Often at school I was made to feel as if my opinions were unwelcome, based entirely upon the fact that I did not meet the expected standards of normality that had been established by my peers. As a result, I quickly became withdrawn and learned to ‘blend into the background’. It sometimes amazes people that an individual as quiet as myself could have had any kind of success on the stage; but, to quote a wonderful Ricky Gervais send-up sketch: ‘How did I know what to say? Because it was written down for me in a script.‘. Real-life communication, by contrast, is fraught with uncertainty.

As soon as I open my mouth in a group setting I am hit with the overwhelming feeling that I am being judged by many people and that many staring eyes are suddenly upon me. Condensing my thoughts into a stream of information that others can understand often proves to be a challenge. I have a habit of using both too few and too many words. If I am particularly anxious and want all eyes to be diverted from me as soon as possible, I will likely try to be brief in my explanation or utterance; but brevity can, in turn, cause more questions to be asked as my statement is found to be lacking the expected amount of information, therefore being unsatisfying.

Overloading with too much information causes the opposite problem: I am very guilty of this one, usually because it is important for me to express my exact thoughts and feelings on a matter. Autistic people like certainty and clear facts: but this amount of information may be too much for others to process, with much of what was said seeming superfluous.

Whilst my brain is working in fifth gear trying to convey information to others appropriately, I am also expected to make eye contact, which can be incredibly uncomfortable for me, sometimes even with those I trust. Then there is the matter of working out when to speak and when to be quiet. In a script, it is established when one person (or character) starts and stops speaking, and when it is the turn of another to do so. In real life, interruptions occur frequently. Finding the right gap in a conversation in which to start speaking can be difficult. Imagine being me, having finally built up the courage to speak and a plan for what to say and how to say it, only to be interrupted or otherwise cut off just as I start to convey the information. Equally embarrassing is when I start speaking a split second after somebody else got there first, and I now feel shame for having immediately made a mistake. 

At school or in any formal group setting, there was nothing worse for me than being suddenly and unexpectedly asked for my opinion. Within a single solitary moment, I had involuntarily been placed in a situation where the entire focus of a room was upon me. I would have to think fast or else look a fool. Sometimes there was no rhyme or reason for this: a teacher or other authority figure had randomly chosen for me to be singled out, and anybody else could have shared in this fate just as easily. On other occasions, when I have been physically and mentally unable to effectively communicate, being asked to involve myself has been soul-destroying when I had previously gone to such trouble to keep myself out of plain sight. 

Then there is the problem of conflict. Even for neurotypical people, misunderstandings are a common part of everyday life; but for autistic people, knowing how to deal with conflict can be incredibly difficult. Many of us have tried time and time again to employ our best social skills and tactful thinking to an uncomfortable situation, only to be met by very little or maybe even no cooperation in return. This inevitably causes a number of frustrations and deep-rooted emotions to come to the fore.

When provoked my anger can be white-hot and long-lasting, as the next-door neighbour I have blanked for over a year would attest to. In other situations, I simply do not know how to respond. In a workplace environment, when employers have adamantly refused to take my needs into account and threats of job loss or disciplinary action have been made, I have been hit by a wave of feelings: fear, depression, anger, sadness and disappointment to name a few. Communicating any of this in such a stressful situation is often so beyond me that I have simply been lost for words. My entire vocabulary (which is quite a considerable one) had been rendered useless at that moment.

Many autistic people, myself included, have a strong sense of social justice and take morals very seriously. We also have an inherent need to follow our passions and being prevented from doing so by others can result in tremendous down spirals for our mental health. Convincing others of our intentions can be difficult for many of the reasons listed in this piece, but other factors such as our body language and tone of voice may provide the wrong impression to those not well-versed in the ways of autistic communication.

Given the many challenges autistic people face in social situations, it is little wonder that many of us choose to be alone as much as possible, even those of us who are lucky enough to have loved ones who understand and accommodate us. If I am still on the earth in twenty years from now, it is very likely that I will be living in some form of self-imposed exile. If nothing else, this pandemic has proved that I have the mental fortitude to do it.

Peace.

 

 

 

How Acting can be a Lifeline for Autistic People

Until I began to talk about my autism in a more public setting back in early 2018, I was not aware of the fact that a number of people on the spectrum (besides myself) had found comfort and purpose in the pursuit of acting, both professionally and in an amateur setting. Knowing what I know now about autistic people, this information is no longer so surprising to me.

The famous actor Sir Anthony Hopkins, well-known for his role as Hannibal Lecter in The Silence of the Lambs among many other celebrated appearances, has revealed that he was diagnosed with Asperger’s Syndrome* at seventy years of age. He believes that the condition has allowed him to work in a way that is more conducive towards creative pursuits, and watching the way in which the actor works seems to prove this correct. Hopkins takes a very considered approach to his craft, studying other people and incorporating their mannerisms into many of the characters he portrays.

One of the most commonly discussed topics among the online autistic community relates very much to the last point in the sentence above. For many of us autistic people, imitation of societal rules and etiquette is a way of life. We refer to it as ‘Masking’, because we are putting on an invisible mask in order to adhere to society’s expectations and to hide (or at least partially obscure) our autistic traits. Unlike the majority of neurotypical (non-autistic) folk, we autistics do not have an inherent ability to learn, understand and/or put into practice all of the various social rules that make up expected procedure in everyday life. In a sense, therefore, we are all actors.

Naturally, then, for some of us, acting may be seen as an obvious choice of hobby or even as a potential career choice. As a child it took me a few years to finally come to the realisation that characters on screen and stage were more than just that, and that they were in fact performers who were paid to dress up in (often) outlandish and exciting outfits, and to embody the various emotions written into the scripts for their characters.

Autistic people thrive on an established routine. Acting at its most fundamental level is all about routine: an actor turns up at the specified time and location having learnt the lines for their character, undergoes the process of being transformed by whatever costume, props and makeup is afforded to them, and once the rest of the production team is ready (whether it be a filming company, theatrical group etc) the actor performs his or her role for however long is required-perhaps from as little as several days to many weeks for a film production, or perhaps many hundreds of performances over a course of months and years for a touring theatre production.

Secondly, whilst much of it is (of course) overly dramatised, performance art is a well-established way for many people, actors or otherwise, to learn about human emotion and some of the ways in which we as a species communicate. On stage or screen, an autistic actor may be able to learn about and express emotions they might never feel comfortable displaying in real life outside of the production and their roles within it.

Thirdly, the world of theatre, film and media attracts a tremendous number of ‘unique’ characters, people who express themselves differently as well as those who belong to a number of perceived ‘minority’ groups. It is a very fascinating industry within which an autistic person may encounter any number of people who accept them for their true selves, allowing them to open up without fear of negative judgement. Great friendships, relationships and collaborations may result from this. The arts provide a certain escapism for everyone, but can be especially valuable to those who feel disenfranchised with the world they have grown up in.

Fourthly, many people on the autistic spectrum have a truly incredible ability to focus on specific details and to take in great amounts of information very quickly. I have never once – touch wood! – dried up on stage and have always learnt my lines with lightning speed, developing layered, three-dimensional characterisations that have led to glowing reviews. Many of these performances gained me a great deal of respect from those around me, who had previously seen me as a quiet, distant sort. When in their element, an autistic person can achieve truly remarkable things and discover pleasure that is rivalled by little else. Here, at last, perhaps after years of rejection from others, the autistic person can find themselves not only being accepted and appreciated, but loved. Characters we identify with (and even those we love to hate!) give spark to strong emotions within us as human beings. We often find ourselves gravitating towards the people who played them, looking at them with a certain reverence; perhaps unearned, or perhaps very much deserved, depending on the individual.

I do believe that there a number of challenges that an autistic actor might face, challenges that perhaps would not pose so much difficulty for neurotypical actors. Whilst acting requires an adherence to a set routine, the art of the actor also relies heavily on the ability to improvise in the moment, something which goes against the idea of a set-in-stone plan. It also requires the ability to work with other actors (ie other people!!!) and to respond to their emotions and energy levels appropriately, not something all autistic people are capable of doing with ease. There is also the business element. Securing work as a performer, particularly if one is seeking to enter the industry without the support of a talent agent, requires a tremendous amount of networking and social interaction, a practice which may leave many (autistic or not) with little energy and a sour taste in their mouths. The world of performance and media is an incredibly cutthroat one; with limited social skills and understanding, it is a world in which autistic people must exercise great care.

It may also be hard for an autistic person to disassociate themselves from a job or role, particularly if being involved with that character or production has become a special interest. Acting requires its practitioners to be able to learn parts quickly, only to move on from them with little emotional attachment afterwards. I have often felt more at home at the heart of a theatre company in the presence of other actors than anywhere else in the world, and when those productions have ended and all of us have gone our separate ways, I have often had a hard time filling the hole that was left behind.

If you’d like to learn more about Autism, please visit my YouTube channel:

https://www.youtube.com/channel/UCotuCdv8AAuKTRRbnL3ki-A

*Asperger’s Syndrome, according to the pages of the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) now falls under the umbrella of Autism Spectrum Disorder. It is a term that is gradually being phased out within the autistic community for a number of good reasons, which do not relate specifically to this post. Despite this, a number of people continue to receive a diagnosis with the Asperger’s label attached even today.

Autism and Vocabulary

One of the things I often read about whenever I find articles discussing autistic traits is the fact that many of us are known to use too many words, or sometimes not enough, when attempting to explain things.

This very much applies to me. When at school, I was much-praised for my ability to turn a phrase and was top of the class when it came to spelling and written English. Writing at the time was and still is a special interest. I did, however, sometimes use words inappropriately.

When I discovered words that I deemed to be impressive, usually from books or dictionaries, I would often casually drop them into my speech, failing to realise that the use of these words would confuse others due to their general lack of use in everyday spoken conversation.

Case in point: I might have said something like ‘That’s a gargantuan lorry’, instead of ‘that’s a huge lorry’, which would seem to others an odd choice of words. I’d also use words without thinking about context, leading to some moments of confusion for others.

Adults were usually impressed by my wide vocabulary, but even they were sometimes a little perplexed and occasionally gave me gentle pointers to make me aware of how I might be perceived by others, especially other children.

Having said all of this, there have been other times in life where I have been rendered completely incapable of speech, usually because of Anxiety. When in a situation requiring a spontaneous explanation, I can quickly find myself on the back foot.

This is because it takes time for me to formulate exactly what I want to say; putting thoughts into words is one thing, but putting words into direct speech, at least in a social setting, is not as instinctual to me as it is to most people.

I don’t understand non-verbal social cues, sometimes misplacing the true intent behind what somebody is saying. As a result, I may sometimes fail to pick up on signs that somebody is unhappy with me or perceive offence from people’s words where none was intended.

When in situations where quick explanations are needed, I struggle to get my point across in a few words or to explain things in a way that is satisfies others. I have a deep-rooted dislike for having to explain myself, harboured over years of (often) unnecessary criticism.

I also find because of the delay forming words & putting them into spoken language, I’m likely to be interrupted. I find interruption rude, but it’s a normal component of quick-fire talk for many & not necessarily dismissive or arrogant, just that person’s way of talking.

What also slows me down in these situations is the endless list of other factors that social interaction entails. Making eye contact is difficult for me at the best of times, but when nervous I may lose the ability to look at the other person altogether.

This leads to misunderstandings as the other person may believe my intentions false or take my lack of eye contact as a sign that I’m lying. When given time to think about what I’m saying and how, my ability with spoken and written language can astound, impress and enchant.

If you would like to learn more about autism and some of my own experiences living with it, you can subscribe to my YouTube channel by following the link below:

https://www.youtube.com/channel/UCotuCdv8AAuKTRRbnL3ki-A

The Challenge of Making Eye Contact: Autistic Social Studies

When I was younger, one of the first things that made me aware that my brain was operating with a slightly different programming system than the considered norm was my ability to maintain eye contact.

Of course, I did not immediately recognize it as being a common autistic trait until later discussions with my parents and interactions with other autistic people.

Making eye contact is one of the standard practices associated with good social etiquette. It is also, alas, one of the ways in which many people determine whether an individual is an honest, trustworthy person. This is where one of the first major problems arises. While not necessarily a hard and fast rule, it is well-known that a notable number of autistic individuals have an aversion to lying, either because they believe in always being truthful or because they are unable to tell lies convincingly; for many autistic people even telling ‘white lies’ presents a huge challenge. However, with eye contact being an immensely uncomfortable (in some cases even a painful) experience for many autistic people, it is very easy for others to perceive our lack of engaging in eye contact as an indication of dishonesty. In most cases, this is a fundamentally incorrect conclusion to reach.

Speaking from personal experience, the reason eye contact can be so difficult for me is often a result of the other social hurdles that the majority of neurotypical (non-autistic) people do not have to contend with, certainly not to the same degree. An example to prove a point: Let’s say that I have just started a new job and the employer has a task that they want me to carry out. Let’s assume that they are telling me what they want me to do in person. I’m relatively new to this work environment and am still learning how the company operates, as well as gradually getting to know all of the other employees. New things are on the whole pretty frightening for me, so it takes me longer than the expected average to get used to the place, the various elements associated with the surroundings (e.g. customers, noises, areas of work etc). It also takes me longer to adapt to the different tasks expected of me. Even when I am used to everything associated with the job, unexpected changes on a day-today basis can be a minefield for an individual like myself who thrives on established routine.

By now, you are probably beginning to understand some of the difficulties I have to contend with in any given situation, this scenario in question being the workplace. Where does eye contact fit into all this? Well, let’s add that into the equation. The employer is explaining to me the various steps of the task they would like me to complete. During this time I am looking at them in order to convey several things: firstly, that I am interested in what they are saying (whether I am or not, I am of course expected to pretend that I am). Secondly, that I am taking in all of the information they are giving me. Unfortunately, in a rather ironic state of affairs, I find that the more energy I put into trying to look as if I am taking in all that is being said, the less likely I am to actually succeed in doing so. Because of the way in which my mind operates, I respond much better to instructions and am much more likely to complete them to a satisfactory standard if they are broken down into smaller, well-explained chunks. It is very important for somebody to be specific when talking to me and explain what they want me to do in exact terms rather than general ones:  Other people usually read between the lines, whereas I will likely not if any ground for potential confusion is given.

I am also very anxious by nature. Anxiety Disorders are the daily reality faced by a disproportionately large number of autistic people, an unfortunate by-product of living in a society that does not fully understand us. It is very common for me to worry about how other people are perceiving me and consequently this also detracts from my ability to concentrate.

If it were socially acceptable for me to listen to somebody without looking at them, even to have your eyes closed in order to focus purely on what was being said, I would be in a much better position to accurately carry out instructions and take in more of the information given to me.

Added to this, I seem to have developed an aversion to looking at people who make me feel ‘uncomfortable’ for whatever reason. This may be a result of their personality, which I might find intimidating, or because of a certain quality of their eyes. I find it nigh-impossible to explain this conundrum, but there is something about certain people’s eyes that immediately makes me feel comfortable, and something about other people’s eyes that makes my skin crawl, meaning no disrespect to them. This judgement has little to do with a person’s character and may be (seemingly) ludicrous, but it can also come about as a result of a difficult social encounter with a person that has led to considerable embarrassment or other negative feelings.

There are a few people who I can look at without feeling the slightest amount of discomfort, certain people who I deem to have ‘nice eyes’. I myself do not necessarily understand how I judge this- the closest I can manage in terms of a description is along the lines of me feeling welcome to look at someone. I do believe that the idea of eyes being a window into a person’s soul is no exaggeration, even if my own assessments are sometimes inaccurate. Generally if somebody smiles at me or makes an attempt at humour during our first meeting, I feel far more comfortable around them and can generally manage eye contact without much trouble.

With others, I find that eye contact to be tremendously painful. Again, I struggle to describe this feeling, but the closest I can manage is saying that some people’s gazes seem more piercing than others, which gives me a feeling that I am being judged, or that said person can see something about me that I would rather keep a secret. Such thoughts are perhaps ridiculous, but arguably this very instinct has helped us to survive as a species, whether autistic or neurotypical!

My assessment of this can work both ways. I remember an individual in my class at college, a very kind, compassionate individual who was very popular. Unfortunately I found her gaze very piercing and as a result did not speak to her much as I found eye contact with her difficult. Any fear I had in this instance, regardless of any instinctive intuition coming into play, was entirely unfounded. In another instance, at university, I had a particular tutor who, if I’m honest, actually subjected me to what might be considered borderline bullying. Usually this was in front of other people which made me even less capable of maintaining eye contact and constantly on edge when around him. From the first, before any of the bullying started, I found eye contact with him immensely difficult. On a side note, you’ll be pleased to know that this particular experience had a silver lining: I have become much more proficient at standing up for myself.

Over the years I have thought about many alternatives. If I’m feeling very uncomfortable, I won’t necessarily force myself to make eye contact these days, although I generally try my best.

I have known a number of autistic people who have used dark glasses and/or sunglasses as a way out of making contact, seeing as the lenses often hide your eyes completely, meaning that the person you’re talking to remains unaware that you are not looking at them.

Recently I tried another tactic that I long been aware of. In truth, I had never had the courage to try it before, for fear of being found out. I wasn’t sure if it would actually work. I tried it on my own dear mother who was completely unaware of what I was doing and, until later on when I asked her about it, did not realise that I had not been looking her in the eye during conversation for the best part of an hour. Instead I had been looking at her forehead, specifically at the very top of the nose just above the gap between the eyes. From the other individual’s perspective, it can appear as if you are looking directly into their eyes, whereas in fact that is far from the truth.

 

 

 

My Next Project

Aspergers has brought about many blessings as well as challenges throughout my life.

This is why, for my next series of YouTube videos, I have decided to team up with the generous members of the Reddit Aspergers group to bring you a wide range of stories from those affected by the condition. These will be brought to you through a series of videos accessible from both my YouTube channel as well as across my other social media platforms.

I wanted to give something back to the Reddit community, to acknowledge the fact that their generous support provided me with my first viewers and subscribers, as well as feedback. Now over 600 subscribers strong, my channel continues to grow as I produce more content with the goal of educating the world about Aspergers and Autism.

A Tale of Autism and Unemployment

I begin every Saturday morning with a pleasant, albeit long, drive to Hay-On-Wye, Wales, where I work in one of the town’s many bookshops (Frequently voted among the best!) It’s honestly one of the highlights of my week and I thoroughly enjoy my time there.

The rest of my employment history has been, alas, a tale of woe.

In some ways it is immensely painful and perhaps even risky to write this; but after over two years of chronic unemployment, something has to give. This is not okay. My voice and story need to be heard. Needless to say, this led me to research the topic of autism unemployment a while ago – and I was shocked by what I found.

Back to me, for a moment. I find myself at a fork in the road from which I cannot move on. I am in desperate need of a job, but so tired of every attempt I have made to hold down one that slowly (but inexorably) the fight has been driven out of me. Every time I have tried I have been shot down.

This is not a ‘rant’ post. If anything this post is meant to be an eye-opener. So many others are going through the same struggles. I am one of the luckier members of the autistic community: that is to say that I am part of the 32% of autistic adults in the UK who are in any kind of paid employment, according to National Autistic Society statistics. Four in ten unemployed autistic adults have never worked. Of those unemployed 77% say that they want to work; but only 16% of adults with autism are in a full-time position. (These are UK figures).

Recently I came into contact (via the internet) with a 49 year-old man with Asperger’s Syndrome who, still living at home, has started to volunteer in a local shop, after swearing that he would never work again following the way in which he had been treated by previous employers.

If you know anything about autism and Asperger’s, you will know that many on the spectrum possess qualities that may be put to good use: qualities that may be considered special gifts. This is why the current state of autism employment is such a tragedy. So many of us have talents that are being overlooked by employers, who are unwilling to support autistic people in the workplace, in spite of their claims that they are ‘Equal Opportunities Employers’.

The unfortunate but unsurprising truth is that the majority of mainstream work environments are not suited to autistic individuals, nor are many workplaces capable of catering to the needs of those on the spectrum. Work is, for most people, an intensely social experience and the social skills of an employee often play a part in their workplace success and career progression. Socialising on a regular basis and reading social cues, even for those of us who are experts at ‘masking’* our autistic traits, can be an immensely difficult experience. Many of us take the words of other people very literally. It is not uncommon for us to misinterpret unspoken messages in conversations, which can cause confusion, disruption, work delays and even conflict. Workplace bullying is, unfortunately, encountered by many autistic individuals who are victimised due to their differences.

The work environment is often a busy one, fraught with noise, people bustling about and constant demands upon an individual, whether that be personal performance goals and deadlines, etiquette required when working with the public and other expectations placed upon the worker by the employer.

Many autistic people experience heightened sensory perceptions and may exhibit extreme reactions (that can manifest themselves both internally and externally) to sounds, sights, smells, tastes and feelings. Some like myself may have difficulty working quickly and/or under pressure due to poor, underdeveloped motor skills (hand-eye coordination). We may also struggle to take in complex instructions and might need these to be explained to us very clearly in order to avoid embarrassment and confusion.

A number of us, myself included, have developed mental health disorders such as Anxiety and Depression. Given the difficulties faced by us as autistic individuals growing up in a predominantly neurotypical (non-autistic) world, this is hardly surprising. In my case, Anxiety is my greatest enemy. Whilst I am not officially diagnosed with an Anxiety Disorder, my daily use of prescribed anti-depressants indicates just how much of an impact Anxiety has upon me living my life. My Saturday job aside, the last paid employment I undertook was a full-time position sorting books in a warehouse. On paper, it seemed as if it was ideal: I would be able to put my wide knowledge of books and authors, as well as what I had learnt about unusual books from my Hay-On-Wye job, to good use. In reality I lasted three days in the position.

Unfortunately many of the excellent skills I could have applied to the job because of my autistic traits were overlooked due to an unwillingness to compromise on my employer’s part. (Continue reading for for information on the positive aspects of autism in the workplace).

The environment, which was noisy, cluttered, enclosed, dull-grey in colour and busy as a hive of hornets was sensory hell for an autistic person. Then there were the performance demands. After only a very short time in the role I was being asked to work at speeds I simply wasn’t capable of. For every time I did something right, something new and unexpected set me back three paces in the wrong direction.

I began to experience what I now unfortunately associate all too regularly with the mainstream work environment: panic attacks.

I find myself, at 23, feeling burnt out. I just don’t care anymore. Anxiety is a natural response created by our mind to help us avoid harm and danger. An Anxiety Disorder, whilst being a nightmarish, compromised  version of basic human instinct, does have a basis for existence in the daily lives of many of us. Going into the workplace means going into an environment where I am looked upon differently to others, where I struggle to deal with the people, let alone the workload. I must work in a manner that pleases my non-autistic employers, all the while knowing that we on the autistic spectrum should be encouraging both ourselves and others to ‘drop the mask’ as understanding of autism increases in our society.

If my body is telling me not to put myself in a situation that is likely to cause me stress, embarrassment, panic and depression, why should I ignore what it is telling me? Whilst it is true that the best way to deal with many fears is to face them, this is not a fear that I can ‘defeat’ or ‘overcome’ through the act of facing it. I will always be different, no matter what I think of that fact and no matter what I do to hide or change it. Luckily for me, I am wise enough to not only accept my autism, but to appreciate the many gifts that it grants me. For those reasons I would never wish to change it in spite of the many difficulties it brings.

I am not going to end this picture I am painting with a big ol’ dark, brooding sky, however: I am going to end it with some ‘happy little trees’ to quote Bob Ross. I am justified in doing so, because autism brings with it many skills that some employers have recognised. Others are gradually seeing the light as well.

Take me, for example. I have the ability to focus on particular tasks with immense attention to detail. I once heard autistic focus described thus: where a neurotypical might take in all that they see and then form an overall idea or opinion, an autistic person is very likely to work in the opposite way, taking in one or two small parts of the whole and focusing intensely on these details, before coming to an overall conclusion. This, for obvious reasons, is an incredibly valuable skill to possess in a work environment. Autistic people have the capacity to see problems from an entirely different point of view, making them invaluable teams members. After all, a group comprising of a wide variety of people with alternative approaches to a task will increase the chances of overall success.

Then take into account what I mentioned earlier: my interest in books and authors. People with autism and Aspergers obsess over certain subjects that are referred to by us as ‘special interests’. Often these interests are all-consuming to us to the point where little else matters beyond them (at least in a relative sense, we care deeply about our loved ones and other aspects of our lives, of course). Needless to say, the more a person knows about a particular subject, the more likely they will be able to talk about the subject with conviction or put their knowledge to practical use. When the subject of these special interests contain areas of professional importance, the sky can truly be the limit for an autistic person working in the right environment with the right people and the correct adjustments made for them in the workplace. There was a very good reason why Hans Asperger often referred to the children he studied as ‘little professors’.

Also worthy of note is the fact that autistic people are known to be (on the whole) very loyal and routine-orientated. Most take matters of time-keeping and similar formalities very seriously, making them, in many respects, model employees.

Thank you for reading. Peace and love to you all.

Joe

*Masking is the term used among members of the autistic community to denote somebody trying to ‘hide’ their autistic traits in order to better fit in with mainstream society.

 

 

 

Shock, Shame and Self-acceptance: A Tale of Autism Diagnosis

Being diagnosed with with an autism spectrum condition is a hugely personal experience. Each individual will react differently to the news of the diagnosis.

I myself, being only seven years old at the time, remember very little concerning the circumstances of my diagnosis. I vaguely recollect being asked a number of questions that at the time seemed strange to me. Following this assessment my parents later came to tell me that I had a condition known as Asperger Syndrome, which at the time meant nothing to me. Even though I had few friends and indulged excessively in the same repetitive interests, I most certainly did not identify myself as ‘different’ growing up.

When I asked my parents about what having Aspergers meant, they told me that I saw the world ‘through a different lens’. It was, in spite of its lack of detail, a good answer for a young child to hear. It made me aware that I was a bit different without making me feel inadequate in any way, encouraging me to take an interest in learning more about my condition when I was old enough to understand the implications.

Because I was diagnosed at a relatively young age, support was put in place during my time at school and I was able to receive some recognition from staff.

Others, however, have not been so fortunate as to have access to an early diagnosis. Many live for a significant amount of time unaware of their diagnosis. It is not uncommon for people on the spectrum to be unaware that they are autistic until well into adulthood and later life. Some live their entire lives without ever being recognised as having an autism spectrum condition.

For many, news of a diagnosis may bring about a huge sense of relief. Suddenly things begin to make sense for the individual: there is both a reason and a name for their ‘different’ behaviours and approach to the world. They can now live a more fulfilling life with the new understanding of self that they have attained. A diagnosis may also elicit understanding and support from others, affecting a relationship with a boss, colleague, family member, friend or partner in a positive way. So many questions are answered with one word: autism.

In other cases, however, a diagnosis may result in grief and/or an unexpected shock for the individual. Often the person diagnosed may feel frustrated knowing that problems throughout their earlier life might have been prevented had they known about their condition sooner. To others it may come as an entirely unwelcome surprise: they may never have associated themselves with autism and they might have some very false ideas about what autism is, based on what they have seen or read from the media. They may also fear the supposed stigma which (unfortunately) exists in some places in society, worrying about whether the people in their life will accept them or view them in a new, unwanted light.

Because the autism spectrum encompasses such a wide range of people with different abilities, it is easily misunderstood, with higher functioning autistic people (or people with Aspergers) sometimes being labelled as awkward geniuses and those who are lower functioning being viewed as people who are in constant need of care and special attention. Whilst there is some basis in fact for these stereotypes, in reality there is a very large ‘grey area’ , since every autistic individual is affected differently. Alas, this very blessing, which is part of what makes autistic people so interesting, is one of the reasons why autism is often so hard for neurotypical (non-autistic) people to understand.

Regardless of whether they are happy or not, eventually the diagnosed individual has to face the facts: they are autistic. Armed with this knowledge, they must make the best of their circumstances. Knowing who to tell and when to disclose their condition is a key issue. An individual’s own discretion and personal preference are of paramount importance in this situation, and I believe it should be left to them alone to decide who receives the information (provided, of course, that they are of an age where they are capable of making their own adult-level decisions).

A diagnosis of autism can be life-changing and I believe that it is a step in a positive direction. The world is more aware of autism than it has ever been, but raising acceptance levels for autistic individuals is crucial.  Notably, many females (far more so than males) go undiagnosed because of the cliche of autism being primarily associated with men. Furthermore, it is believed that autism affects females differently. Many females are more skilful when it comes to ‘masking’* their autistic traits than their male counterparts. There is also a disparity in the amount of people diagnosed with autism in non-western cultures, perhaps due to a lack of awareness of the condition and or/resources.

If you are autistic, it is important to remember that you are not alone. Autism brings with it a range of talents which, in many cases, outweigh the problems that can accompany the condition.

Peace and love to all my autistic and non-autistic friends,

Joe

*Masking is a term used in the autistic community to describe a person who is attempting to hide what they consider to be their ‘obvious’ autistic traits. They may be doing this as a way of trying to fit in, and may not even be aware that they are doing it or that they are on the spectrum.

 

The ‘Asperger’ Controversy

Recently I spoke to a man named Quinn (also known as Autistimatic on YouTube and Twitter) regarding our various experiences as people on the autism spectrum. He shared some valuable insights and during our discussion we touched upon the current debate among the autistic community over the usage of the term ‘Aspergers’ and whether it is currently acceptable to use the word to describe individuals with an autism spectrum condition.

The debate in question began when recent evidence came to light identifying Hans Asperger, the man responsible for a great deal of what we know about Aspergers today and the man after whom the condition is named, as a Nazi sympathiser. Furthermore, Aspergers has now been removed from the Fifth Diagnostic and Statistical Manual of Mental Disorders (the DSM-5), with the diagnosing of Aspergers being discouraged by a number of professional practitioners.

I must admit that I am stubborn to give up the word. Aspergers is what I was diagnosed with and is, for better or worse, the word I have identified myself with for the past sixteen years (I was diagnosed when I was around age seven.) I do not believe in this case that a label is in and of itself harmful; rather we should be focusing on what the label means as opposed to the actual label itself.

Let me explain further. Society is now largely aware of the term Aspergers and possesses a reasonable amount of understanding in regards to what it is. I disclosed my Aspergers when being interviewed for my current job and my employers not only knew what is was but possessed an understanding of how to help me work at my optimum level. The word ‘autism’ from my personal experience has, in comparison with the use of the term ‘Aspergers’ elicited a wider range of responses from the non-autistic members of general public, many of whom are still misinformed and many of whom, alas, still associate autism with the classic ‘Rain Man’ cliche.

As a YouTuber I find myself in a dilemna. I intend to keep using the term Aspergers to describe myself and others for the foreseeable future, as many of my viewers identify with the term much as I do myself. I also have viewers who identify as solely autistic, viewers who use both of the aforementioned terms to describe themselves, and those who are undiagnosed but who suspect that they have the condition. All are welcome on my channel including Neurotypical (non-autistic) people, some of whom may be watching to educate themselves or because they have people in their lives who are affected by the condition.

Whilst I worry that using the term Aspergers may be a turn-off for some viewers, I take consolation in the fact that many successful and well-informed YouTubers (such as The Aspie World) continue to use the term.

Joe