The Influence of the ‘Other’: Why are outsider stories so popular?

Right to left: The Outsider, The Grinning Man, Edward Scissorhands

I recently watched a recording of the musical, The Grinning Man. It’s a good case study in outsider fiction as with the caveat of being made available for a week in lockdown, you can’t buy the recording, there isn’t a soundtrack. The show has developed a cult fan base among those who have seen it live.

The tragic comedy is based off a Victor Hugo novel (no, not that one) which has inspired multiple outsider stories, including the character of the Joker. It tells the story of a boy found on a beach, his mother drowned, his mouth cut into a hideous grin. Growing up he struggles with forging an identity, wondering who afflicted him. Raised by a travelling circus, he becomes a symbol of rebellion – a stuggle which draws him into the heart of the kingdoms monarchy, where he discovers his family history and learns the mystery behind his face.

I loved the musical, yet it got me thinking – what is it about the cult of ‘the outsider’ that is so popular? Its the premise behind numerous classics including Oliver, The Catcher in the Rye,’The Outsider’ by S. E. Hinton, and countless films and stage shows.

The easy answer would be that we see our own experience of being cast out in these characters, and I can certainly attest to that – I spent a lot of my time at school being generally uncommunicative, I experience things in an overly sensory way – both physically and emotionally, and I do worry about the way my autism will affect my relationships, friendships and prospects later in life – this blog post is going to try and dig a little deeper.

Outsider Stories

One point to raise about outsider stories is that they frequently involve a character being taken from the world they are familiar with and placed in a world which is forbidding, cruel and ill suited to thier abilities.

In ‘The Catcher In The Rye’ we see an image of a 1940’s society painted with our lead character – Holden Caulfield, struggling with the concept of maturity. The adult world to him is a forbiding place of ‘phony’ traditions.

“Among Other things you’ll find that you’re not the first person who was ever confused, frightened even sickened by human behaviour. You’re by no means alone on that score, you’ll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now”

Salinger, The Catcher In the Rye

At the centre of this is the idea of society vs. the individual – in the case of the Catcher in the Rye the motivator is that the world has lost its sense of innocence. In Brave New World, the central point is that humans are becoming emotionless, consuming machines. At the core of outsider fiction is always a critique of society from the perspective of a character who tries to fit in while suffering severe disadvantages.

A more accurate analysis is that we relate to the disillusionment with society that is portrayed, rather than the characters themselves. Part of the reason outsider fiction works is due to the fact that the characters presented to us fill us with fear. They present a forbiding view of our insecurities, that we’re eerily familiar with. 1984 was written after the fall of Nazism, just as Brave New World was written in reaction to the ‘modernization’ of the 20s’

Atwood makes the point that novels of idealism or dystopia tend to surface in times of great social change and upheaval:

“Insofar as they are critical of society as it presently exists, but nevertheless take a dim view of the prospects of the human race, utopias may verge on satire, as does Swift’s Gulliver’s Travels; but insofar as they endorse the view that humanity is perfectible, or can at least be vastly improved, they will resemble idealizing romances, as does Bellamy’s Looking Backward. The first world war marked the end of the romantic-idealistic Utopian dream in literature, just as several real-life Utopian plans were about to be launched with disastrous effects. The Communist regime in Russia and the Nazi takeover of Germany both began as Utopian visions”

Margret Atwood, Everyone is Happy Now

Looking at this on a more personal level, there’s a scene in Edward Scissorhands where our lead character is asked ‘what would you do if you found a suitcase full of money?’. This resonates with me I do struggle to understand concepts like money. Being used to thinking about complicated subjects in a certain way, can disable you from being able to understand different or ‘normal’ ways of comprehending those concepts.

The prevalent theme isn’t always society. In Phantom of the Opera and The Grinning Man the central theme is relationships, although both utilise huge sets which present the ‘real’ world as forbidding, and feature characters with cartoon-esque character flaws. These can ring true as I can struggle to regulate my emotions when it comes to friendships, relationships or not getting on with someone. Mimicking melodrama is something I do quite a lot, and harnessing the ability to have a natural interaction which doesn’t feel forceful or based off of learned attributes or sayings is something I really struggle with.

All outsider texts place a character with a unique skill trait in an absurdly out of context environment in order to emphasise that idea of dislocation. Furthermore, the fact that they tend to end in some form of resolution for the main character without a change in society reinforces that feeling of hopelessness in the face of huge challenges.

A scene portraying the ‘suitcase full of money’ question

The ‘Other’…

One criticism of some outsider fiction is its tendency to turn characters into gods who earn the admiration or ire of those around them purely for thier special ability, or trait.

“Unfortunately, this type of detective’s existence is only justified by his skill. He isn’t loved for who he is. He is tolerated for what he can do. As a child, I found that inspiring. Perhaps I could be accepted if I could just be good enough at something. But as I enter my 30s, I am more wary of the exchange. What happens to autistic people when our skills are no longer of use? And not all of us have exceptional skills in the first place”

Cynthia Erivo, Autistic people on TV are often white men. ‘The Outsider’ tells a different story.

There are some whose knowledge of autism starts and ends at ‘Rain Man’. For many of us, this is the only opportunity we’ve had to see autism represented. In defining outsider fiction I’m referring to characters who are hopeless in the face of insurmountable challenges.

Let’s talk about H.P Lovecraft…

The father of modern horror, Lovecraft spent his life as an Outsider – an insular character, plagued by fears. He also relegated others as outsiders. A racist and homophobe he once penned ‘“If the dog and bitch promiscuity of the earliest new moralists could be excused on the ground that our normal disgust is only old fashioned prejudice, it is not remarkable that nauseous and abnormal sodomy should make an equal claim“. Ironic then, that his work would become an inspiration to so many marginalized groups…

His work employs fear of the unknown and forbidden knowledge to appeal to our primal terrors. Among them is short-story ‘The Outsider’which you can read here. Lovecraft portrays a character who emerges from a dark castle, into the light of a new world. As he encounters human civilization he see’s people fleeing frantically, struck by inhuman fear. Estranged, our protaganist turns around and see’s a vile, inhuman freak approaching him. Perplexed, he reaches out his hands to touch the creature. To his shock he realises he’s touching “a cold and unyielding surface of polished glass

This may be taking outsiderism to an unrealistic extreme. However, I point to the creeping anxiety I can feel in at times, how difficulty socializing can lead to isolation, the panic attacks I used to have when I was on my own.

Autistic people can become anxious when they realise they are staring down the face of mammoth challenges. Autistic climate activist Greta Thunburg has described how she became depressed at a very young age when she realised the magnitude of the environmental challenges we’re facing. I have been sick with worrying about political and environmental issues, as well as fretting over those times in my life where my personal circumstances have made me feel as if I’m not making progress and stuck in a routine of worrying about the future. Worried I wont get into university or fail my degree, worried I’d fail my PIP assessment, worried my career will disintegrate. I still have days like that, as I’m sure many of us do. However, there are times when I’m optimistic.

“This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support”

Jim Sinclair, Don’t Mourn For Us

Another element in outsider fiction is acceptance. Our lead character has to learn that their difference dosent devalue them, and the problem lies with the way the world see’s them. My intention with this blog is to demonstrate how the world surrounding autistic people often ‘disables’ us, stopping us from ‘functioning’. For those that have felt that sense of estrangement, the burden is not on you to change yourself and you’re not broken inside just ’cause you’re being made to feel like you don’t belong.

Charlotte Amelia Poe is an author and artist. In one interview she discusses being part of a community of ‘outsiders’, pointing to her love of fandom conventions, as somewhere she can express her individuality as part of a group, in the same way as I do with music. She takes care to note “with the rise of populist politics and an insular society, at a time when the notion of ‘us versus them’ is increasingly common, people with autism have really important viewpoints to share”

While we may be ‘outsiders’ we’re not outsiders everywhere. Those senses of community and togetherness are really important for autistic people. Through those communities we are free to express ourselves.

An Atypical Perspective…

A disconnect with society can be relatable: the principle reason outsider fiction works is that it presents an extreme juxtaposition of a character with society, and often paints the world as strange or surreal. This works ’cause we’ve all felt like that, autistic people especially. In struggling to communicate and interact with others at times, in struggling to cope with over stimulation, and to regulate my emotions, Its occasionally easy to feel like an ‘outsider’ – perhaps that’s why I relate to that sort of fiction so much.

Fear of the Unknown’ is a powerful theme, in fiction and reality: In outsider fiction, there are two types of ‘fear of the unknown’ – there’s the fear our character feels in facing seemingly insurmountable challenges, and there’s the fear everyone else feels towards them and the way they see the world. This is relatable in the sense that even small challenges like understanding money can be difficult for some, and yet the ability to do that is considered ‘normal’ by most. By presenting this dichotomy outsider fiction asks the spectator to look on thier own vulnerabilities, or those of others which they’ve witnessed and question the societal norms and ways of thinking that castigates those vulnerabilities as abnormal or frightening.

Our disabilities don’t devalue us: I criticised some outsider fiction earlier for leaning too heavily on ‘savant syndrome’ as a representation of autistic characters. For reference, while I hold to those criticisms, I do think these stories can help show that autistic people have skills which are valuable. More than that though, by giving characters sympathetic traits, skills or a meaningful bond with one or more characters, they accentuate that sense of acceptance. This can be witnessed in the real world through the communities we form alongside our special interests, and our commitment to our work and creative endevours.

Miniscule Indicators: An atomic theory of communication

Communication can be a thorn in my side – Its frustratingly easy to miss visual or verbal cues which either change how I understand the communication or how I sound. The other aspect I struggle with is that people often have so much jargon that the point of what they say is lost in a seemingly endless void of nothingness. A colleague made this point a few weeks ago:

“most of the conversations I have are like Atoms. You’ve got the important bit at the centre which everything hinges on, and you’ve got the electrons as little orbits of information which float around the centre, yet most of them are absolutely nothing”

I loved the analogy so much that I couldn’t help thinking of the other ways communicating with people is atom-like. I’ve come up with a connection:

Social cues and the words we choose to use are minuscule– the existence of them are recognized, but they are not something most of us often consider.

Despite this, atomic structures provide a basis of everything around us in the same way as the way we communicate can form the basis of how we think, and in turn how systems and structures of society are shaped.

Using the ‘tiny building block’ understanding of atoms as an analogy, I aim to express how the small ways we communicate (or are communicated to) influences thought, and in turn shapes systems or larger ways of thinking about the world.

Of course there are more nebulous similarities like the fact that an atom, like communication, is composed of multiple elements. This is not so much a blog about Atoms but about communication and how the way people or elements interact has outcomes. To use one final metaphor, lets atomize a complex issue:

Atomised communication

Lets stay on metaphor for a second as they are something I’ve paticulary struggled with. Its not so much that I didn’t understand them its just that I used to have to decode them. Like the phrase ”those living in glass houses shouldn’t throw stones” – I still don’t see what on earth the meaning has to do with glass houses, but I can grasp the general idea of “being vulnerable to criticism means that I should not be willing to criticise others”

“Metaphors capture assumptions we hold about ways to think and communicate about problems and solutions in organisations. Metaphors correspondingly provide clues to how we think about our alternative communication behaviour”

Organizational Culture in Action: A Cultural Analysis Workbook
By Gerald W. Driskill, Angela Laird Brenton

You may regard metaphors as small but they’re actually incredibly significant. I’ve mentioned before how I prefer ‘autistic person’ to ‘person who has autism’. In a sense, this can be a metaphor as the ‘has’ is possessive, and gives the impression that I’m burdened with a heavy load.

Another small yet significant factor is tone of voice. I struggled a lot with confidence in going to different places growing up and due to the way I portrayed myself, that image as someone who’d struggle in social situations became an identity. Problem being, I often struggled with understanding the emphasis. After all there’s a difference between…

“You cant go there on your own and You cant go there on your own”

The former implies that there’s something wrong with the place. The second suggests that I’m the problem. The implication is different. Taking a wider look, we may care to ask how we sound when we say that ‘autistic people struggle to fit in with societal norms’. Are we saying that autistic people are the problem, or are we making the point that society needs to change to better understand autistic individuals?

I would like to talk about ‘microaggressions’. In that odd point between school and higher education, when I mentioned my autism at careers fairs, the company representatives tone would often change, they’d insist on interpreting for me and the look on thier face would turn to one of sympathetic mournfulness.

“my differences make the unintended transformation from simple quirks into “symptoms” of a “disorder”, for which it is assumed that sympathy or even pity is in order.  The default position is that I’m broken, defective, diseased….The rest of the song goes that I must therefore be incompetent, not of sound mind, the rebuttal of which falls on unlistening ears because everything I say is automatically suspect”  

Laina Eartharcher, Autism and microaggression

We see in the examples I’ve given, tiny traits, small as atomic particles forming the basis of what people with autism experience, day in and day out. These tiny yet significant micro-traits in how we talk about autism, make up the structures of how we think about the condition as individuals and by extension how we as a society treat autism. The same applies to how we communicate about people from other minority backgrounds. Some examples: A policy proposal whose wording weighed on the outcome. A job you didn’t get because of a tone of voice or facial expression you might have had. These are all examples of how small communication traits have adverse effects.

Massive Effects

Building off that last point, I will show a few ways communication can have a profound and huge effect, from an atypical perspective:

A few weeks ago I noted in a blog post how disability benefit assessments are very much a tick box excersise. Questions are worded along the lines of ‘how does your disability affect you’ – its possible someone could accidentally end up describing just how much they do cope with. Claimants often feel the need overstate how much they stuggle – I can’t deny that its quite tempting to focus specifically on times you’ve became anxious and broke down in social situations, regardless of the amount of times that hasn’t happened. For good reason- the way you communicate in that situation will make up a vital process in deciding whether you’re going to get support. A skewed question, an answer that uses key words which state your case, a tone of voice adopted during an assessment – tiny building blocks, which shape the lives of autistic and disabled individuals.

I used to do voluntary support work for autistic adults. Specifically, I was an ‘outreach’ worker. While I never saw anything of the sort I’m about to describe I used to go to a lot of community living settings, and one evening I had an emotional reaction to a news story about the way some of them work. The point of community living is to allow disabled individuals to move out of institutions, and into settings where they can exert greater control over thier lives. However, research by disability commissioner Elaine James and social workers Mark Harvey and Rob Mitchell, found that these settings still subject autistic adults to institutional routines. There was one example which struck me, painfully illustrating my point about the social impact of how we communicate:

In one setting, the team found an “artifact” pinned to a chair belonging to one of the residents. It read: Dinner 5pm; Bedtime 6pm; With Medication; Night Night; Sweet Dreams. A life pitifully summed up in 10 words. What better illustration of the dehumanizing impact of institutional routines?”

Darren Devine, Community living settings

Maybe at this point though you’re doubting if the small ways we communicate can really have that much impact. Well, autistic people in the UK and America have started talking about ‘camouflaging’ in order to describe the process by which they hide thier autism, pretending to be neurotypical. Here we see the example of quite extreme, often military-associated language being used to describe some peoples inclination to ‘hide’ their autism in public, based in turn off preconcieved ideas of ‘normal’:

“The behaviours themselves can be grouped into masking and compensation strategies. In the short term, camouflaging results in extreme exhaustion and anxiety; although the aims of camouflaging are often achieved, in the long-term there are also severe negative consequences affecting individuals’ mental health, self-perception, and access to support” 

“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions

A question not asked in work due to fear of sounding ill-informed, feeling pressured to mimic others in a desire to ‘fit in’ – We see a process happening where due to the social cues and structures which make up ‘normal’ communication, autistic people feel compelled to hide their autism. Like atoms making up a concrete monument, we see hidden processes at work, where facial expressions, language choices become part of a culture of ‘here’s how we communicate’ treating anything different to that as strange. The words we choose to use, the tiny decisions about tone of voice and facial expression put together establish a society-wide understanding of autistic people and the way they act and behave.

Like atoms forming a new structure, autistic people’s understanding of the world around them changes in response to societies’ understanding of them as individuals. The usage of words like camouflaging as a critical term, and ‘on the spectrum’ instead of ‘has autism’, continues to shape understanding in a way which in turn shapes institutions, societies’, and systems.

An Atypical Perspective…

Social cues are minuscule and rarely considered: Perhaps this is the reason people rarely think about the effect thier communication has, or the significance of the gestures they are using. And I can see why, if you’re looking at a sculpture, okay atoms are the microscopic building blocks, yet you rarely need to comprehend them. The issue is that the tiny elements that go into your communication will affect how you’re perceived. I’ve talked before about how I’m likely to be emotionally receptive to what you say and thus, its always worth taking a microscope to the way we communicate.

Cues both reflect and shape our understanding of the world: Although there’s some disagreement in this area, the generally accepted idea is that the ways in which we communicate influence social settings and that those social settings reinforce the way we communicate. For example patronizing language used in an institutional environment for autistic people, will be likely to foster a self-reinforcing idea of them being weak minded. One way to change the way social structures are shaped is to examine those communication cues and set about seeing how we can change them.

Communication provides a basis for everything around us: I’ve made this clear in the first two points but its worth reinforcing that communication methods, however small, are of consequence – Its why LGBTQ+activists have spent years campaigning for the recognition of different ways to describe thier place on the gender spectrum. Why feminist groups and BLM campaigners often flag up the concept of ‘tone’ as something you should pay attention to. Why neurodiversity campaigners are still seeking full recognition of the autism ‘spectrum’. Its easy to see in each of these cases how the way we communicate around them could provide the building blocks for how we think and act on these topics. One change of word or tone can change the entire meaning of a sentence and affect how its understood – harnessing that principle, ask what you could do in your own life to change the communication methods you’re utilising.

Emotional Frequencies: Music and my autistic mind

A popular misconception associated with Autistic people that we are incapable of feeling emotion and that therefore you can say anything you like to us, and we wont react. The reality is that as an autistic person I’m likely to be incredibly emotionally motivated, and sensitive. I don’t struggle with having emotional reactions, but learning how to properly understand and regulate them, especially when they’re utterly drowning me.

One way in which I choose to understand how I’m feeling is by listening to music whose lyrics and sound articulate how I’m feeling. This not only helps me to make sense of my emotions but to silently express them in a way in which I might not otherwise be able to. Notice that this post is named ‘music and my autistic mind’ not ‘music and the autistic mind’ and I’m not trying to come to any broad conclusions.

Also, for the purposes of this blog I will be focusing on metal…as we all know, the greatest musical form known to man. I kid, I kid. However the genre does present a good case study

Regardless of your opinion on the bands I like (I’m not saying we can’t be friends if you don’t at least appreciate Iron Maiden, but you’re edging) I hope you find something helpful in this blog!

Emotional Understanding

A significant amount of the music I love is depressing. The favoured topics in the genres I’m using as a case study are death, war, oppression and anxiety. Its worth pointing out that rebellious genres flourish in societies that allow free expression for obvious reasons, and that music reacts to society, just as society can be shaped by culture. Not that its all politics: Japanese Kawaii metal about chocolate exists (and its awesome!), showing how metal perhaps has some link with Japanese culture. Widely speaking though, depressing music comforts me.

Prog musician Steven Wilson makes mercurial textures out of moroseness. He has a quote about sad music, which I find pertinent

“Music that is sad, melancholic, depressing, is in a kind of perverse way, more uplifting. I think if you respond strongly to that kind of art, it’s because in a way it makes you feel like you’re not alone. So when we hear a very sad song, it makes us realise that we do share this kind of common human experience, and we’re all kind of bonded in sadness and melancholia and depression.”

Steven Wilson

To give some examples which resonate with me albums like Blackbird by Alter Bridge, In Absentia by Porcupine Tree or even Heaven & Hell by Black Sabbath, strike an impression as they anchor thier messaging and playing styles in emotions and societal themes which have affected me in my own life. While theres truth in the statement ‘metal music makes you feel sad’ a more accurate analysis would be that ‘metal helps you to process sad feelings’

Music can make you reflectively contemplate your own anxieties, or see the issue of death, corruption and environmental destruction in a wider scope, past the mournfulness which envelops you in that moment. In an series of case studies of trauma survivors collated by Diana C. Herald, she makes the point:

When Kelty battled feelings of hopelessness and dissociation as a child, she recalled “music was the only thing physically happening that wasn’t abusive,” and “real in a way that nothing else was.” For these subjects, music served as an anchoring other, reminding them of the ties that ultimately bind us all—that there is more to life than the horrors they endured.

Diana C. Herald, Musical intensity In affect regulation

Its worth pointing out that we don’t see comforting effects across the spectrum. One study found that people who associate with subcultures such as goth or black metal may be at a higher risk of self harm. However, theres a crucial difference between comforted by that culture due to having depressive tendencies, and the culture itself encouraging those actions.

Another study by the University of Queensland involved metal fans being given an ‘anger induction’ where they recalled moments in thier life that inspired anger. They were asked to spend ten minutes listening to songs of thier choice and ten minutes in silence. The music helped them get into a more positive mental state and “explore the full gamut of emotion they felt, but also left them feeling more active and inspired”

This raises the incredible possibility that music in the vain of Rain In Blood by Slayer, or Psychosocial by Slipknot is actually incredibly soothing and a loud equivalent to enya. Joking aside the chief takeaway from all this might just be that listening to music reduces negative emotions (shocking, right) – even taking this at its simplest illustrates the power music might have in helping those who struggle to regulate thier feelings.

Music and Autism

I mentioned earlier how music has political and societal links. Musical movements dont happen on thier own, and its also the case that music deals with a lot of those emotional stimuli which effect me as an autistic person – the caustic social commentary of Rage Against the Machine or Kreator, the harsh pictures of mental health painted by Linkin Park and Deftones.

Regardless of the genre the changeable, multifarious, and harsh tones of rock are, for me personally, perfect at supplementing the autistic experience. For instance, I rely a lot on routine and don’t enjoy chaos. Metal genres are like fairground rides – the later allows you to stimulate your fear in a safe environment, the former allows me to experience chaos, and sensory overload in a way which allows me to deal with those sensations, so I’m perhaps better prepared for them when they happen in real life. The entire genre paints an immersive picture, that is useful in trying to understand myself but may also be beneficial in fostering social understanding of autism at large.

“Chaos and uncertainty are high during and immediately after disturbances, resulting in discomfort from not knowing how the disturbance will end or what the future holds. Uncertainty and chaos may be associated with the patterns of mathcore’s, grindcore’s, and progressive metal´s rhythmic complexity. These sub genres are characterized by unusual time signatures, atonality and dissonance in the manifestation of song elements that are reminiscent of chaos. The listener is constantly challenged to digest and anticipate dynamically interacting and often antithetical sound patterns and rhythm structures”

David G. Angler, Heavy Metal meets complexity and sustainability science

A lot gets propagated about the ‘metal community’ and indeed a lot of that is romantic self-aggrandizement – the idea that we are one huge supportive family is mostly true, but that sentiment is woefully lacking in places. It is the case however that feeling part of something and surrounding yourself in a community who share a similar ‘niche’ can be of a great benefit to autistic people who struggle to communicate. Indeed the themes of rebellion and being an outsider are paticulary pertinent. In fact, there’s evidence to show that the ‘metal fan’ identity, enables people to make sense of themselves during thier emotional development.

One final concept I’d like to bring up is the idea of ‘flow’. This is a process I experience when I’m writing, a musician experiences when they are performing, and a fan experiences when they’re at a show. Here’s how it works: when you’re at a concert your brain can fire off so-called ‘mirror neutrons’ that allow you to mimic the cognitive and emotional state of the performer or your fellow fans. As an autistic person, escaping from the real world and getting into the flow of an experience is something I do naturally and with ease (I even get that, when I’m listening to a song) Ultimately, the immersive experience is positive in that it fosters a sense of engagement, satisfaction and happiness.

Overall, through metal I’ve been able to better understand my often confusing emotional states, forge an identity for myself in a way which transcends my struggles with interaction ans socializing, and make sense of my personal life as well as the wider world around me. I’m not saying the scene is perfect. However, these pros and cons can be applied to just about any musical movement or section of society.

An Atypical Perspective…

Music helps in processing emotions: Especially when you are autistic, like I am, music can help to effectively process feelings which you may not fully comprehend. One phrase we like to use in the music critic community is ‘melodic weight’ – this describes how music carry’s meanings which can take someone from one emotional state to another, or remind them to see thier experiences past the narrow personal prism they may be perceiving.

Music can strengthen social skills: Both through music itself and through the communities and cultures which form through music, individuals like myself learn to interact in a social setting, adopt shared practices or ‘rituals’ and form relationships based off a shared love of an artist, or style of music. It is easy to see how this is valuable to individuals struggling to find an identity for themselves or interact with others.

Music has personal and social significance: I mentioned earlier that through the expressiveness and changeable rhythms, music has the potential to replicate the autistic experience. Well, apply that logic to social issues such as mental health struggles. Apply that even to issues such as political struggles or war, where the sound and poetry of a song may come close to representing those realities. I’ll do a blog post expanding on these theories one day, but needless to say there may come a point when studies are done to significantly chart the influencing relationship between art and society in a comprehensive and widespread way. When that work happens the voices of those who have been most affected by music will be vital.

Defending the Spectrum: A guide to labels and portrayals

I was diagnosed with Autism very early in life. Specifically, I was diagnosed with ‘Asperger syndrome’. This was before the lack of a solid definition for the term caused new diagnoses’ to be replaced with ‘Autism Spectrum Disorder (ASD)’. Still, regardless of the name, the trait helps me make sense of myself, and the history behind autism is fascinating to me.

Although we knew of the existence through the work of scientists like Bleuler and Kanner, Hans Asperger is responsible for making us see autism through a wider lens. A child – for the studies were on children – might speak well. They may struggle with social interaction, yet excel in maths or the arts. Despite his thesis being published in 1944, not until 1981 did Lorna Wing discover the piece, publishing the diagnosis under the name “Asperger Syndrome”

Asperger himself is often cast as a liberal figure who embraced different genetic markers. However, lots of his work took place in the context of Nazi science and all the horrors that entailed. Although he was never a Nazi party member and later professed to having opposed them, historical documentation shows that he willingly and knowingly assisted in sending autistic children to institutions such as Spiegelgrund where they were experimented on and killed

When these revelations came to light in 2018, they came as a shock to a number of individuals who had been labeled and considered themselves aspergic, myself included. Lets start by going over how I choose to define myself and what the term ‘Aspergers’ means for me.

Defining Myself

I actually stopped using the term ‘Aspergers’ to define myself years ago.

That decision didn’t have anything to do with the revelations about Hans Asperger – I didn’t actually know about them, nor about The Diagnostic and Statistical Manual adopting the broader ‘Autism Spectrum Disorder’. I just found myself becoming more comfortable with the term autism.

Though if there’s one aspect which did motivate me to use the term autism, its the preconceptions people would gather from media about the more limiting ‘Asperger Syndrome’.

Arguably the most famous piece of fiction on Asperger Syndrome is ‘The Curious Incident of the Dog in the Night-time’ by Mark Haddon. Its a decent portrayal of some of the elements of autism, yet seems insistent on letting you know about our lead characters disability at every opportunity and leaves little room for subtlety – so while his math skills are portrayed as amazing, his social skills and understanding of metaphors are showed as non-existent.

This is quite a common portrayal of autistic individuals in the media. In ‘The Good Doctor’, we’re presented with a character who’s a medical genius, and also has Asperger syndrome, the implication being that all people with the condition also have ‘Savant syndrome’ – whereby you lack social skills, while excelling in areas such as science. That’s not widespread though, making up about 10% of autistic people.

Take another example – BBC show, ‘The A word’. In this portrayal the focus is on the family of an autistic child who are torn apart by thier child’s difficulties. Again, that happens, and raising awareness can be admirable, yet I get annoyed when writers depict autism with such broad pen strokes, exuding intellectually dishonesty. Rarely do you see characters with Asperger syndrome, who are not defined by thier condition.

So, I don’t call myself aspergic as I tend to see more curiosity, if I use the broader terms of ‘autistic’ or ‘on the spectrum’. This allows me to describe how my autism affects me, whereas Asperger Syndrome incurs the trials of having to describe the terms meaning, or having to reconcile your experience with that of the characters portrayed in pop culture.

Defining Autism

Should the term Asperger Syndrome exit popular usage, to be replaced with ASD? While I by no means want to speak for anyone who calls themselves aspergic, I happen to prefer ‘autism spectrum disorder’.

Hans Asperger made his career separating autistic people who were ‘little professors’ as he called them, from people who perhaps struggled more, or didn’t serve a useful purpose in the eyes of the state. In my last blog post I condemned the use of the terms ‘low functioning’ and ‘high functioning’, pointing out how they’re rooted in capitalistic ideas of someones worth being determined by how well they fit within certain economic guidelines. The 2018 research shows an extreme example of this:

“Delving into Aspergers work exposes a two sided nature to his actions. Asperger distinguished between youths he believed to be remediable, who had the potential for ‘social intergration’, and youths he considered were irremediable…his senior colleagues in Nazi medicine likewise advocated compassionate and first-rate care for children who might be redeemed for the Reich and excision for those they believed to be irredemable”

Edith Sheffer, Aspergers Children: The origins of autism in Nazi Vienna

Now, I am obviously not comparing Hans Asperger and his beliefs to our current understanding of autism. I’m saying that our understanding of autism is influenced by the economic and political systems around us and those changes of understanding are reflected in the media we consume, and the descriptive language we use.

Indeed, at the start of this blog, I mentioned Lorna Wing who helped to introduce the term Asperger syndrome, but just saying that would be to undersell and misconstrue everything Wing actually achieved and believed. Through her work she introduced the concept of the autistic spectrum; the idea that autism affects people of all ages and is diverse in character and content.

Despite her work on ‘Aspergers’ she was far from a stickler for labels, arguing that helping the individual should come first.

“Every type of autistic disorder is made up of a large number of features. From the point of helping the person concerned, spending time on assigning them to a sub-group is of little value. The main clinical task is to decide if they have an autistic spectrum disorder and then to asses thier pattern of abilities The demands of research are different from those of clinical work and investigators may choose to examine whether specific, separate sub-groups can be found among the autistic spectrum disorders”

Lorna Wing, The Autistic Spectrum

This mindset has been at the forefront of efforts to look beyond categories in research, and of course, ASD is now widely and commonly used. As an aside, Wing also founded the National Autistic Society – one of the most helpful initiatives for autistic people my country has ever seen. Frankly, if after the revelations about Hans Asperger, the autistic community still needs a figurehead, I’d be hard pressed to find a much better one.

Finally, a note to those who identity with the label ‘Asperger’, who may also feel upset by those revelations. I understand how you feel. If that label is part of your identity and you want to go on using the term…good on ya. Seriously, I mean that, I’m glad you can find comfort in something which I can’t. Know that you are no more defined by the actions of a psychiatrist 70 years ago than you are by a fictional character with autism. Our conditions help to define us, yet we are no more the labels and the stereotypes that surround us, than we are machines built to ‘function’. In the words of Wing:

‘Nature Never draws a line without smudging it’

An Atypical perspective

Labels reflect and reinforce understanding: To set out a timeline – scientists such as Kanner initially used the word autism to describe people who struggled to communicate to a debilitating extent. Asperger afixed to that theory his concept of ‘high functioning’ autism. Later, thinkers like Wing would alert us to the existence of a ‘spectrum’. In all these scenarios, the language changes as the understanding changes. This applies on an individual level as well, which is why I’d never want anyone to call themselves something they feel uncomfortable with. However, I do feel as if these changes in terminology are to be welcomed, more often than not.

We are not defined by our labels: Its very common for media about autism to portray the disability as an all defining force which envelops a person an all thier actions – while autism certainly can reflect how we perceive the world around us, we are still informed by our motivations and experiences. The fact that labels are always changing and we can pick or choose them based on our understanding of both the labels and ourselves, proves they are not fixed definitions which make up every aspect of our character. To act like they are is to dehumanize us entirely. As for Hans Asperger – well, you don’t need to believe Issac Newtons religious writings, to be bound by the laws of gravity.

The Spectrum is central: Imagine how you would feel if you were told that the colours were entirely separate from each other and not related in any way. Now imagine how ridiculous that sounds applied to autistic people. Understanding that theres a spectrum is key to understanding that a person with a diagnosis does not have a set of homogeneous traits, and two or more people with the same diagnosis may act or behave differently. That’s surely a vital step in understanding the skills and difficulties of individuals.

‘This Snowflakes an Avalanche’ – Why the words we choose are important

One thing you need to know about me is that I’m likely to be very emotionally receptive to what you say. I’m likely to take what you say very literally. This means that a mean word can really get under my skin and affect mentally, just as I can really take a kind word to heart.

I’m reminded of a debate I with a friend about a quote from psychologist and lobster enthusiast, Jordan Peterson. Needless to say I’m not a fan and this quote perfectly sums up why our choice of language is vital.

“If I stay in an unhealthy relationship with you, perhaps it’s because I’m too weak-willed and indecisive to leave, but I don’t want to know. Thus, I continue helping you, and console myself with my pointless martyrdom”

Peterson, 12 rules for life

My friend wanted to give Peterson the benefit of the doubt and interpret this as understanding the problem. I mean…you could interpret it like that. Still, I’ve known people who have been in toxic relationships and I can’t help wondering how the statement might read to them. ‘weak willed’…’pointless martydom’…Anyone reading could be forgiven for thinking that Peterson’s suggesting that your at fault if your in an unhealthy relationship . The mistake here – again, benefit of the doubt – is a failure to connect wording to thier concepts and experiences.

This is a principle which spans across disciplines

The Influence of Words

I ‘m not about to entertain the idea that language determines reality; I’ve been down that rabbit hole and the consensus is that language can influence the way you think, but not to the ridiculous extent that races with less colour categories can’t distinguish between green and blue.

“Cross-linguistic research on color perception shows us that the language we speak doesn’t bind us to a particular world view, but it does dominate the way we perceive and think about our experiences”

David Ludden, Fifty shades of Grue

Words provide the tools to convey meaning, although that meaning is dependent upon the context. For example, one thing that may define our generation is struggles over identity as well as to protect the environment. In which context, you might hear questions like this:

How do you decide what needs to be changed?

There’s a useful way of asking this question and a not very useful way of asking. Genuinely questioning which issues deserve the most attention to make sure our efforts aren’t counterproductive: fine. Implying that you can’t, and that we shouldn’t bother: less fine.

I’m sometimes surprised at the potential meanings my language imparts. My friend and colleague casts a critical eye over some of these posts (Thanks Sion!), and a few weeks ago he flagged up the word ‘ally’ in describing where I stand in relation to the Black Lives Matter movement – I clarified how that was the agreed upon terminology, but agreed by whom? I support the principles of BLM, but I’m not with them in America, charging into battle. Maybe supporter – a term with separate pitfalls – would have been better to use?

In 2017 the Trump administration published guidance to the US center for disease control on seven terms they should not use: evidence-based, science-based, vulnerable, fetus, transgender, diversity and entitlement.

“what isn’t named can’t be counted. And what can’t be counted can’t be acted upon. If a word like “transgender” is never mentioned—or categories like race or gender are never recorded in official documents—then you can never have data about how services, violence, social ills or outcomes are distributed across those groups. So if you ever want to see if we have a problem in policing related to race, pay related to gender or a problem with violence against transgender individuals, in all of those cases it becomes impossible to make a scientific argument—because if those categories are never recorded in official documents, you can never do the data collection to show what’s true”

Maron, 2017 , Why Words Matter: What Cognitive Science Says about Prohibiting Certain Terms

So by prohibiting those words from being used in official documentation, Trump was trying to shape conversations around transgender people, identity issues and science, presumably to get people to think about those issues in a very ultra-conservative, right wing way, influencing public policy in doing so.

He’s not the only one to pull this tactic. Politicians, advertising execs, writers, musicians, all use language to fulfill their purposes. No doubt I do…

Words and Autism

For instance, this blog is named atypical perspectives – I have chosen ‘atypical’ to show that my autism is something which affects all of my perspectives on the world, and to demonstrate that my autism is something which is part of me, rather than something I ‘have’ or…sigh…’suffer from’.

“I have people say to me ‘I understand you suffer from autism. I don’t. I have autism, I suffer from idiots”

Anne Hegerty, television personality

This is an admittedly huge debate within the autistic community, and I’m not saying that everyone will like the same terminology as me, simply that people should be conscientious about the terms they are using.

One example is the term ‘retarded‘ – a term that has been historically used to demean disabled individuals, is now used to describe something that’s broken or unpleasant. I have a particular issue with usage of the word as that language reinforces traditional stigmas around disabled people – that they’re broken or weak compared to other humans.

Words which surround autism – which ones are appropriate in your opinion?

Phrases that I remember being more commonly used in my lifetime, that are thankfully now beginning to exit popular usage, are the terms ‘high functioning’ and ‘low functioning‘. This is an oversimplifed way of looking at the autistic spectrum which categorizes people based on how well they’re perceived to perform certain tasks. This should be obvious but as humans we don’t ‘function’ – we act, we perform, we even create but we’re not machines built to perform a series of tasks – if you apply my creative skills to a task I will probably excel. If you put me in a busy, customer facing environment…well, to use that terminology…I wont function.

So again, we have to be very careful about the language we’re using. We should take care not to use words that in any way mean ‘broken’, or have a stigma attached to them, and we should also rid ourselves of the purely capitalist mindset that autistic people are there to ‘function’. No one is arguing that these words will shape the fabric of our reality. Simply that the language we use determines how we think and behave towards autistic people.

Finally, an explanation of the title. I started this blog by noting how the individual words and phrases that people use towards me can affect me massively. One word that can really get under my skin is ‘snowflake’ (which is in itself ironically taken out of context, for those who have seen Fight Club) and I’m sure if this blog post goes widespread, a few will want to call me one. The term was paticulary bothering me one day, before I heard Grace Petrie sing ‘You’ll see how much a snowflake matters, when we become an avalanche’ and later, Idles bellow at the top of their lungs ‘This Snowflakes an avalanche!!!’. The word is not hurtful now I’ve repurposed it in my mind – ’cause if that phrase could mean so much to two of my favourite musicians, what could the term mean to someone like me?

An Atypical Perspective:

Words have an emotional response (and that matters): I’ve mentioned how words can get under my skin. And by no means am I trying to speak for anyone here, but the reason I took such issue with the Peterson quote at the start of this blog is because I imagined how a toxic relationship survivor would react hearing that. I could expand on why being crass about how you use language, and brushing criticism aside as ‘political correctness’, can reap some awful results but frankly I think you can guess them, and being compassionate shouldn’t need any further justification.

Words carry influence: As humans we act on how we understand topics. I need a lot of guidance and spelling out in order to understand instructions. If then we act on the meanings we’re given, then language chosen in policy affects how we’re ruled over. If you have a condition, yet your condition isn’t on a certain medical list ’cause the powers that be don’t believe your condition to exist, then you may not get the help you desperately need. And of course, with the current situation, ‘stay alert’ conveys different connotations to ‘stay at home’. The principle applies in multiple areas.

Context is an explainer, not an excuse: You might have heard it said that context is everything, but not necessarily. Offensive use of language in a humorous environment is still offensive use of language, victim blaming in a book that’s going to be read by your fans is still victim blaming. Alternatively, someone questioning your motifs for trying to affect change can be more ambiguous, yet still requires that extra clarity. Its why I say when I’m called a snowflake ‘this snowflakes an avalanche’ – it mocks the idea that words and how we choose to use them don’t matter.

‘This Snowflakes an Avalanche!!!’

‘Proving’ my Autism: Malicious Compliance and Bottom-Up Thinking

If you’re disabled, you have probably had to endure the process of proving your disability, usually to receive some form of support such as personal independence payments. If you’ve ever had to fill out one of these forms, amidst the obviousness of knowing you’re disabled, you’ll know exactly what I mean.

“Describe in precise detail the way your disability effects you”

This depends weather you’re asking me at the moment or generally. In fact, the vast amount of sensory inputs I receive on a day to day basis mean my disability effects me differently at different times. Filling out this form for example can cause vast amounts of anxiety, and will likely affect me for the next few days, with the concern about the effect my answers will have. I find being asked for a nuanced view of my autism, which focuses solely on the negatives, quite reductionist. In order to deal with those emotions I will likely set a routine for myself and listen to music, which will allow me to comprehend how I’m feeling without having to understand all the ways autism has affected me…I hope that answers your question”

Okay…that’s the answer I dream of giving

This is how my mind genuinely jumps to answering questions like this: Why shouldn’t it? – a complicated answer for a non-specific question. After all, autism determines how I perceive absolutely everything and I’d personally argue that ‘absolutely everything’ is quite a wide spectrum to draw on when composing an opinion.

By answering questions in this way, I’d be using a form of ‘malicious compliance‘, whereby my analytical (and tongue in cheek) answer satarises the entire process, whilst actually demonstrating the way I see the world.

Bottom-Up Thinking

Most people, if they are asked to describe what thier day to day experiences look like will draw on memory and what they know about the world to sort all thier experiences into a few set categories, which they would then give a general overview of. Fair enough!

In this scenario they’re using, top down thinking i.e mental shortcuts to filter information, selecting what they feel is useful and confirming what they already assume. In a fast moving medical environment, a doctor will have little time to contemplate the complexities of who requires medical attention, and will base thier decisions on a range of ‘heuristic’ factors which allow them to make rapid decisions. On a less positive note, other aspects of top down thinking are ideology, law and order, the rules – those are not bad things in and of themselves, but can be ways for people to bypass the subtleties of problems and make biased assumptions based on how they already perceive the world.

By contrast Bottom-Up thinking is a details and analysis first way of thought. I’ve written before about ‘information overload’ and how I can become overwhelmed, yet also thrive off of sensory stimulants.

“Based on this comparison, it is logical to conclude, this act of processing multiple sensory data for an autistic person, becomes frontrunner to the act of logically formulating a memory-driven hypothesis. Wherein the typical-minded person is taking in the concept before the details, based on collective memories, the autistic mind, due to a bombardment of sensory cues, is taking in the details before the concept. This idea is a definer of the bottom-up process approach to thinking. An approach that is indispensable to innovative thinking

Samantha Craft, The innovative thinking style of the Aspergers mind

When I’m writing an opinion piece on how I see the world as an autistic person; I trawl through multiple sources and articles, soaking in the detail, looking for connections and using them to build up a distinct picture of the issue in my head. Data analysis is another issue where that in-depth details-first analysis is needed. A person writing a song or a book may have some preconcieved concepts or influences, but they will be multifarious and the final product will still be a new invention created from disparate elements and reflecting the persona of the writer.

Tradition and ‘Standard Practice’

So, while the answers that I have fantasied given on “proving your disability” forms, are malicious compliance, they’re also a demonstration of how I see the world at large…

One of the key experiences autistic people have to go through is proving thier disability. This includes through needs assessment, but also in day to day life where it can be difficult for others to understand how your needs are different from theirs – ‘you don’t look autistic’

“Since the original definition of ASDs, those on the spectrum and their families have been have been challenged by stereotypes. The numerous reasons for this associated stigma include the individualized nature of the syndrome, the associated different speech and actions, and the lack of understanding in its physical basis”

Danielle N. Martin, East Carolina University

Needs assessments are a tick-box excersise where the individual must fullfill a set of criteria that has been pre-determined. The logic behind them is a very much a top down form of thinking, based off of what has already been assumed about the way autistic individuals think and act. An individuals experience or neuro-diversity is considered less important.

This mindset spans institutions. Any organisation that wishes to produce creative content will likely come up against a range of questions about the effect said content could have, usually to preserve an image of some sort. There’s nothing necessarily wrong with that, and it is standard editorial practice.

Its also worth pointing out that obsession with preconcieved ideas and biases often manifests in more sinister ways, such as cases where organisations turn down application forms of disabled applicants, based on preconceptions about thier ability.

I’m not advocating that you all fill out your PIP forms with essays on the state of how disabled people are treated, or that you use your next employee feedback forms to advocate for an overhaul of the existing economic order. There are always channels through which you can express yourselves creatively. Still, its important to realise that bottom-up thinking is a cornerstone of creativity, and besides – its always fun to think about malicious compliance.

An Atypical Perspective

Listen to those with something to say: Bottom-up is also a method of organising. Staying on autism, its important to listen to what autistic people say about thier experiences, and give them the opportunity to express themselves, without fear of economic reprisals. This will allow us to move away from ‘one size fits all’ solutions and assumptions about what autistic people need and towards one which creates disability-friendly systems. The same applies to questions of discrimination in race, sexuality, identity etc.

Ask ‘what can be achieved?’ more: This applies at an individual and orginisational level. Anyone or any institution looking to reach into areas such as data and new media may be held back by traditionalism or ‘standard practice’. A public service that aims to help those in need may benefit from technology to understand its impact. For instance, research bodies in the science or innovation sectors could benefit from podcasts and videos telling its story’s – developing these requires people to look beyond notions of how things have been done in the past, asking ‘what can be achieved?’

Brainstorming and networking: ‘Brainstorming’ is one of the most common examples of Bottom-Up thinking – forcing people to look at the bigger picture. If you’re trying to take a holistic view on a problem like homelessness, start with basic causes and branch out from there. Same applies to networking – an example of a scheme which started small and is now becoming widespread is ‘disability confident’. Its not perfect for different reasons – but its a step towards creating societies which accept disabled people, moving away from the strict individualism of ‘here are our disability guidelines’. These are effective ways of taking a well rounded view of complex problems.

I’m Autistic…here’s how I’m dealing with Lockdown

‘I bet self isolation comes naturally to you doesn’t it?’

‘No one needs to tell you to socially distance, am I right?’

‘The benefit people like you have during this time is you’re always very happy with your own company’

These are three of the statements I’ve heard from various people during lockdown. They’re (usually) intended in good faith, yet come across patronizing

The truth is that a lot of autistic people are struggling just as much with everyone else. While I do enjoy my own company and often become overwhelmed, that does not mean I don’t look forward to regaining the freedom I had in the pre-coronavirus world.

While in pre-lockdown life there were lots of sensory simulators -the train journey, the buzz of city life, live music – my heightened perception means they can motivate or enthuse, just as they can scare or overwhelm.

And all that is going to come back. I’ve said before that I’ve learned not to take anything for granted, and those emotional or sensory stimulants, and the routine that comes with them, may present themselves as yet more stimulating.

In the meantime, here are some of the ways I am learning to deal with lockdown, day by day.

Routine

Understandably routine often gets confused with repetition -and that’s certainly part of the idea, though it need not be a laborious process.

In lockdown, days have tendency to blur into one – the stagnant feeling that life is not going forward or backward can lead to a lack of motivation. Indeed, the idea of routine grants me and some autistic individuals a great amount of comfort – it helps to create a sense of sureness in our actions, and our thoughts (The amount of times I’ve been doing research and my minds decided to focus on a complete unrelated matter!) – Its easier to feel productive if you have set aims and goals to work towards vs. being in the weird in between space, when you are unsure as to how to fill your time.

Lockdown has taken away that environment, very much by making my home and work life inseparable. I do not live on my own, and more than once I’ve found myself awkwardly having to tie the loose ends of my day together, reconciling a particularly noisy day at home with an important meeting. Having a routine allows me to mentally separate the two mindsets.

‘Stimming’ and stimulation

Shorthand for self stimulatory behaviour, you may have witnessed stimming through autistic people rocking back and forth, flapping their hands, repeating words or phrases. It appears odd, but like routine it is an important form of self regulation – as the AsIAm blog explains

An autistic person is able to self-regulate through stimming and navigate their sensory environment. This helps them cope with challenges in their sensory processing in their day-to-day lives. It is a means of easing physical pain and internal anxiety as well as expressing one’s emotions, from frustration to joy.

AsIAm blog (2018)

Often not allowing an autistic person to express this is harmful as it can generally trigger information overload or ‘meltdown’. With respect to lockdown, we have less of a sensory environment surrounding us, yet its one of the most emotional times many of us have ever experienced. If I read a news article that triggers an emotional response, I’ll often pace around my room to keep my feelings in check.

That’s not to say that ‘stimming’ is bad – Indeed, as mentioned at the beginning of the article, I miss the rush of sensations that greet me on a day to day basis, which allow me to make sense of the world.

I’m still going for walks, making sure to cook myself a variety of foods, listening to a range of different music, I could go on. These elements alter my mood massively – a nice walk through the local wood, one of my favourite foods or an album I get an emotional response to can cheer me up, just as a mean word from someone can mess me up massively – its always been that way.

Music and Writing

“Some mornings I pray for evening, for the day to be done and some summer days I hide away and wait for rain to come ’cause it turns out hell will not be found within the fires below, yet in making do and muddling through when you’ve nowhere else to go.

So then I remember you, and the way you shine like truth in all you do and if you remembered me you could save me from the way I tend to be, the way I tend to be”

Frank Turner

Another element of autism is obsession. Actually, scratch that – obsession is a nasty word. One element of autism is having a passion for a range of particular subjects. I have a few of these; I have touched on my love of journalism and getting to the depths of a mystery or investigation (an interest which leads me down some very weird research rabbit holes). I’ve chosen to focus on music here, cause this is a blog post about coping and occasionally feels like the one element keeping me sane.

Music is not so much a means of escape. Rather, listening and putting my thoughts on music to paper provides the means to articulate my emotional up’s and downs in a way that I may not be able to express otherwise. If I’m feeling depressed I’ll quite often listen to a song that expresses those feelings. Simultaneously, if I’m having an up day, I will listen to positive music. Through that I’m able to experience a form of emotional management which allows for a form of catharsis while simultaneously calming me down.

So you see through this ‘obsession’ I can exercise a form of emotional and self regulation that allows me to cope during lockdown.

An Atypical Perspective…

Routines are valuable: planning weeks into advance reminds me that this is temporary. Very much like ticking off tasks each week, across a long plan, while working towards the eventual lifting of restrictions. Its like having a sense of power, almost, to say ‘right’ I’ve got through everything I needed to do in that month, and I’ve got a plan for the next.

Having sensory input is important: And indeed, dealing with that can be an essential learning process. Surviving this in a healthy way will require regulating my emotions in a way which provides seeing sensory input as positive, and reacting to that in a way which helps me make sense of those emotions.

Having a passion is vital: Using music as a form of self-regulation and putting those emotions to paper has been very useful – as someone who runs a separate blog on the subject, and writes for various publications, the activity not only allows me to set targets for myself in a time when it can be easy to question the meaning in our lives, but preoccupies my admittedly busy mind on an analytical and skillful task.

I hope these tips can help whether you are autistic or neurotypical…

Information Overload! ‘Misinfodemics’ and the role of media

Are you ever confronted with so much information, or so many options that your ability to process stops working and you become anxious?

Yeah me to. Living inside my head can be quite difficult at times. This shows in numerous ways, yet there are 3 illustrative examples.

I can’t deal with multiple commands at the same time.

If I’m in a noisy room for too long I tend to retreat to seclusion.

I get nervous about Cash Machine withdraws, so I (often) stick to a routine amount, which lends a comforting sense of structure.

Everybody suffers with information overload. Some autistic people suffer with overload more, yet all our brains are receptive to simple, easy to comprehend info, that establishes a brand and sets a great story.

Stories

There’s a link to be drawn between the way people like me awkwardly digest information, and campaigns. Politicians and brands use catchy three word slogans ’cause they know you will remember and understand them.

It’s the same with ‘fake news’. They serve the function of boiling down complex subjects like coronavirus, to fictional or at least incomplete titbits of information.

‘Speed and information overload – the internet allows what is posted to spread at the speed of light, before anyone can check it. By the time one scam or lie has been investigated many others have taken its place’

ELA area, public library

We are seeing a process where more information is available, yet is increasingly condensed. Rather than two people giving us separate commands, hundreds are. This in itself creates an ‘overload’ where it can become anxiety inducing to find a complete picture of the full truth.

‘Misinfodemics’

Misinfodemic’ (Noun): The spread of a health outcome facilitated by viral misinformation

Posters as part of an Ebola Health Campaign in the Congo

Having an overload of information understandably leads to people seeking simple answers which often provide an oversimplification, peddle an agenda, or are just false.

According to WHO Director Ghebreyesus, with Covid-19 ‘we are not just fighting an epidemic; we are fighting an infodemic’

This is not a new idea. Eerily basic answers to complex problems have shown throughout history.

Anti-Vaccine: In 2019 England’s NHS chief executive blamed anti-vaxx content for their falling uptake. This points to how complicated concerns around child safety can be exploited to promote dangerous theories like ‘vaccines cause autism’ (An idea my existence finds particularly absurd).

Ebola ‘fake news‘: Violence associated with politics, in democratic republic of Congo, aided narratives about the US creating Ebola, leading to armed attacks against treatment centers. This provides a dangerously inane answer to the problem of disease, linking politics with confusion about the disease.

A Soviet Propaganda poster about HIV/Aids

‘Misinfodemics’ in the Soviet Union: Soviet propaganda in the 1980s claimed that the US was responsible for the spread of HIV in Africa. This is another example of public information being weaponized to play into pre-established ideologies, while producing an emotional response to the threat.

We are not immune to this effect. When someone claims that ‘5G frequencies carry the coronavirus’ that’s being based off confusion about the causes of coronavirus, distrust of authority, and linking two consecutive stories together.

“disease also spreads when people cluster in digital spaces. We know that memes…spread like viruses: mutating rapidly until one idea finds an optimal form and spreads quickly. What we have yet to develop are effective ways to identify, test, and vaccinate against these misinfo-memes”

Gynes and Mina, The Atlantic (2018)

Much of the efforts to combat these types of stories have focussed on ‘debunking’ . While this has its place, its not particularly helpful. Online experiments in Brazil found that providing corrective did not lessen common misconceptions about Zika, and reduced levels of confidence in all information about the virus.

Without a rethink of how media platforms present information, our crowded media environment will always result in an ‘overload’ effect where the lack of ability to comprehend numerous ‘goings on’ in our busy room, will lead us to the seclusion of stories that provide dangerously easy-to-understand answers.

An Atypical Perspective…

Being shouted multiple commands at once is unhelpful: consuming the news is stressful. The dramatic reporting is overwhelming – heightening worry which is easy to exploit by those shouting ‘foreign virus’ or ‘conspiracy’. Different outlets all having perspectives, also creates an air of mistrust. While dramatics have their place, the task of news media could be reassuring and explaining.

Our media spaces could be less busy and noisy: We have a duty to seek out reliable info. Yet, the difficulty in seeking it is absurd. Making media spaces seem less noisy could be a matter of digital and traditional outlets prioritizing expert analysis and ‘explainer’ material, where people can seclude themselves to get a full picture. This must rely on authorities like government providing trustworthy, simple info.

Routine as a manner of coping: Much like me with cash machines I often stick to a set amount as it allows me to retain a sense of certainty and structure. How much news do you need to consume to find out all that you need to know? set an hour aside every day to find out the facts, then turn your computer off. Outlets obviously have a role by making understandable info accessible.

By implementing some of these methods we would also be doing a favour to some autistic people as well who suffer with uncertainty and ‘overload’.