The Empathy Imbalance: How autistics relate to others

Seeing autism as an ’empathy disorder’ is quite a common umbrella theory…

An umbrella theory applied to autism is any idea that tries to explain several symptoms of autism using one underlying concept. ‘Magical world theory’ which I went over a few weeks ago technically counts as an umbrella theory. Despite still being in its early stages, the idea that a lot of autisitc traits stem from difficulty in predicting and understanding change might be useful in our understanding of the spectrum…

Umbrella theories are problematic in that trying to explain anything using one overarching net is likely to result in some oversimplification. By some of the proponents own admission, this is definitely the problem with describing autism as a deficiency in feeling empathy.

I know that I don’t completely lack empathy. I “feel with” people greatly. I can understand when I’m in a happy environment ’cause I feel positive as a result, which partly explains why social gatherings don’t worry me. Alternatively, news of human suffering effects me, even if they might not do so personally. When the Grenfell Fire tragedy happened, I remember having a severely upset and angry reaction, to the extent that I felt socially paralyzed, unable to divert my thoughts.

Just as ’empathy disorder’ lacks nuance, its not entirely wrong. It is true that autistic people can have more difficulty discerning how other people think and feel through elements such as facial expression and body language. Not to mention “reading between the lines” or discerning the hidden meanings in how people communicate. This is what theorists like Simon Baron-Cohen mean when they describe ‘mind blindness’. The problem here is that we’re talking about empathy in binary terms.

Shallow vs. Deep Empathy

We tend to think about empathy as the process of “putting yourself in anothers shoes”. That is to say, trying to understand someones emotions and thought processes from thier outward expression.

In social work its quite common for a support worker to show you images of different facial expressions. While overtime an autistic person can learn to identify them, they may sometimes struggle to properly respond to these signs, at least initially, when they encounter them in real life. Again, this shows a bottom up thought process at play whereby an autistic mind tries to find and then discern detail in order to come to a conclusion, rather than relying on learned attributes of ‘this is how to respond to sadness’…

Many hold this up to show autistic people lacking empathy. After all, using outward signals to directly work out what a person is feeling is the definition of empathy employed by thinkers like Paul Gilbert who uses the phrase “looking through the eyes of another”. And, they’re not entirely wrong. Just like a good improv comedian, to encourage communication, I shouldn’t say ‘no’ I should say ‘yes and…’

This form of empathy is called “shallow” or “cognitive” and is concerned with knowing how somebody else is feeling. However to understand a persons sorrow is not the same thing as feeling sorrowful. There might be scenarios where this approach is needed. I used to enter a state of extreme panic when I lost anything that I valued, as not having that would make me feel like I was loosing my sense of surety. While I still find that an unpleasant experience, being able to recognize that sort of anxiety in younger autistic relatives helps me to observe from a distance, so that I might take a rational approach, without feeling overwhelming emotion. Its the same form of empathy that a support worker might feel when confronted with someone suffering from a dark patch in thier mental health. Although this is the form of empathy autistic people struggle with, its by no means alien to us. I had a mentor through uni who was autistic, and helped me to understand my anxious states as well as my contended and happy ones.

This leads me to discuss “deep” or “affective empathy”. This, according to psychologist Daniel Goleman is when “you feel physically along with the other person, as though their emotions were contagious”. You might have heard some autistic people describe themselves as being too empathetic. Well, this is precisely what is meant. In my blog on music I point to mirror neurons where your brain processes, and by extension your actions and emotions, mimic those of someone you’ve observed. As an autistic person, I see a lot of my behaviours as learned from influential figures in my life. For me its a natural reaction when a friend describes to me thier upset, or when I hear emotion strongly transmitted in music and film, to find myself having a heightened emotional reaction.

A pitfall of affective empathy is that managing your emotions becomes more difficult. Constantly having strong emotional reactions which can change without warning can lead to burnout, and psychological exhaustion. Here’s where we discuss compassionate empathy, whereby we’re moved to help. Compassionate empathy recognizes thought processes and emotions as intrinsically connected.When friends comes to me describing feelings of anxiety or distress, I often feel deeply emotionally connected, and often try to help them make sense of that by telling them about my own experience of those feelings, and how I overcome them.

Interestingly, while as an autistic person I struggle with cognitive empathy, I have large amounts of affective and compassionate empathy.

Imbalance

It goes without saying that different people will have different levels of empathy. How much value you hold to the different types will depend on how much value you place on the trait. According to psychologist Steve Taylor, empathy is the thing that makes us human, and that all oppression and cruelty is the result of a lack of empathy.

“if you identify with another person, if you have a psychic and emotional connection with them, then it’s impossible to treat them brutally. You recoil from their experience of suffering in the same way that you recoil from your own suffering. In fact, you feel a strong desire to relieve their suffering and aid their development. But if you can’t identify with them, then there’s no limit to the amount of suffering you can inflict. You can’t sense their pain, so there’s nothing to stop you causing it”

Empathy: The Ability that Makes Us Truly Human

Peronally, while I can accept the idea that inflicting suffering on another requires a suspension of empathy, for me its the contrast: the ability to change if and how we relate to others that makes us human. As an autistic person with a strong sense of right and wrong, I used to be – and to an extent still am – constantly confounded about how some politicians can be aware of the suffering some of thier decisions inflict, and continue with them irrespective. These politicians may have the ability to excersise shallow empathy in being able to talk to people, understand thier needs and appeal to them, while a lack of affective empathy allows them to make decisions which maltreat others, without the burden of guilt or pain.

The same principal applies to conversation. If I as an autisitc person came to you, physically shaken and tell you that I’m suffering from a great deal of social anxiety after being overwhelmed, the correct response is not to reassure me that I’ll be fine or remind me that everyone has days like that. These minimize my experience by removing the specifics with little regard for my anxiousness. Rather, trying to understand how this has affected me, and helping me make sense of my thought processes through conversation might be a far more useful approach. This creates a non-judgmental environment, therefore creating space to address a stressful situation.

Remember earlier when I described “mind-blindness” – the way in which autistic people struggle to predict anthers thought processes or reactions in an exact moment. Well, this is related to “theory of mind” the idea that we constantly mind-read and thats how we gauge the mood and motives of someone we’re talking to. Notably, the ‘blindness’ that some autistic people can experience in certain interactions is something experienced by everyone. Empathy usually isn’t something that just happens – its a conscious decision to be emotionally present.

Going back to the ‘I come to you feeling stressed’ example, there will be scenarios where you are so caught up with our own problems that you emotionally withdraw. Able to sympathize – i.e to express pity, but not able to be empathetic. I bring this up ’cause we spend a lot of time beating ourselves up when we dont have an empathetic response to someone who comes at us with thier problems. Make no mistake though, empathy is a skill not a natural trait. It requires learning to be aware of our own emotions and detaching from them. When we can’t do that our minds create ’emotional static’, whereby an opportunity for understanding is lost. The effects can be anywhere between short-term falling outs to the fracturing of relationships.

An Atypical Perspective…

Showing empathy goes beyond reading facial expressions: Its easy to see why we primarily associate empathy with being able to read and understand body language. It defines probably a larger proportion of our interaction with others than speaking does. However, by doing this we are ignoring the empathy that comes with being able to feel another persons pain or joy, when your emotions mirror theres, or wanting to help someone. By gaining greater understanding of these we could learn to develop them and vastly improve our interaction, and attitudes to other people.

Your emotional state is important too: We tend to see empathy as primarily concerned with other peoples mental states. However, how you manage your emotions will determine how you show empathy to another person. With cognitive empathy you need to be emotionally present and being in that state all the time can be difficult, and has to be practiced. Same with emotional empathy. You want to be able to ‘feel with’ others but looking after your own mental health and taking time to recuperate from burnout can be just as important. The quicker we realise empathy as difficult, with multiple challenges, the better we can look to support people with expressing and receiving that kind of kindness.

Empathy is nurtured and developed: My intention with this blog has been to show how empathy can be challenging – the truth is that autisitc people are incredibly emotional most of the time and want to help people wherever possible, although we may not always know how. However, with the sensory environments we interact in, mixed with the fact that many of us more easily piece together detail over a period of time, rather than instantly identifying a category, we find empathisng at least on a shallow, every day level, quite hard to broach. I suggest that those who view empathy as an easy character trait which comes naturally, although well intentioned, overlook its complexities as a skill…

A Return to A New Normal

The following is another piece of prose, which I do occasionally on this blog to break the admittedly demanding writing of in-depth research pieces. It describes my experiences commuting to work for the first time in about six months, and learning to adjust to the new environment surrounding me.

Just as the clock ticks as a wave sacrifices itself against a shore, so too must the drudgery of my day to day desolation eventually end. A loneliness which consumed our lives loosens its grasp, as the world wearily resumes. The months spent collapsing my memories into the mercurial qualities of a ill-remembered existence feels alien. I counted the days yet lost track, I measured the months yet they felt meaningless.

Before returning to a relieving routine, I remember reading about relativity. The theory that remarks upon the interpretation of time relative to your own frame of refrerance. So to did my perception of each day become malleable during those unmoving months- its seemingly motioning march traduced to the pernicious pang of never needing to know the time.

So, as a forgotten amount of days passed and the second hand tempted the minute hand, the world changed. I – and no doubt many more – emerged into the daunting familiarity of a ‘new normal’. Everything’s reassuringly remembered, yet behind the traversing trains and the once more sprawling streets, theres an unusual undertow. Just as a mask obscures the expressions which portray vivid emotion, so the world presents a facade of normalcy. Still, even commuting you feel the twinge of foreboding, and the rush of beauty – both wrought from an aftermath of isolation, which deals in both fear and wonderment.

Even the arcane mundanity of the train platform feels illusionary, when laid against the listless static of the last few months. A mask envelops my mouth and acts as a relentless reminder: the world you’ve stepped into is not the same. We’re still in transition and other side remains uncertain. Even so I can’t help smile at this newfound narrative, that I’m travelling to a world at work, even if the fundamentals which we once welcomed are altered, definitely for toady, likely for a while.

Naturally, my mind flickers to everything that hasn’t changed. Regardless of the directional dictations lacing thier way through the scrambled streets, its easy to simply observe the routines of commuters, the chatter of colleagues and acquaintances as they themselves become cradled in a the arms of a new course. One that they recognize as uprooted, even if thier relationships and memories feel fundamentally familiar.

So you see, each sight and sensation is a scattered fragment, or fossil of a system which likes to give the impression of sanity, even when circumstances prove severe and sordid. The sound of capracious activity which spills from the traders saluting a new day of business, the pacing of shoes upon a stone ground each in different succession to the other, even the whistling rush of wind through the trees. All these create a censorious atmosphere which gives the impression of normality, irrespective of reality.

Coincidentally, I seem to blend into that impression. Remember everything I’ve written about masking? The stimming, the supposed strangeness which can show through my movements and emotions. That’s shrouded, if you will behind a mask of normality. Irrespective of the strain that exerts, I welcome the reliability of the routine, the contemplation of the commute, and the cathartic nature of communication. Simplicity, it appears, is not for me or these times. Just as I occasionally desire the secrecy of seclusion, so I need the frenzy of the city streets and the immersion of a sensory environment. Call that confusing, the contradiction is akin to perfectly holding a pendulum in perpetual motion – requiring great skill, and somehow still never being truly satisfied.

I transcribe these thoughts alone in an empty office. The once thriving lifeblood of society exists outside, and is one I can hear from the streets yet has slowed to a smoldering inside, like a machine moving once more after an undisturbed slumber. Its a curious question. Am I wrongly expecting a return to routine? Is my championing of company too much too expect in a chaos where calls for community were crumbling long before the malignant illness lashed us into lock and key. I know thats the anxiousness talking though – the snake that bites at you in sinister uncertainty, surrendering you to the darkest side of your thoughts. Silently and steadily, we resolve to step forward.

There are flickers of positivity, as there are of fear. On the Saturday before I write this, I saw friends for the first time in months. And, in those moments the mechanics of our morose mundanity seemed to cease – like the first time I saw more of my family, we were seizing a fleeting freedom from a fall into an abyss that many would have formerly thought fictional.

‘We’ll be looking back in ten years saying ‘remember the pandemic’ one of my friends contemplated, creating an air of optimism by placating this stage in life with another. Poignantly, as I pointed out in my first piece of prose, realising the temporarily of our situation seeks to satiate a desire to see past the disease. Past the silence and into a new light that transcends a ‘return to normality’ in favour of ‘reinvention’….

Or rethinking, I thought, realising how much I’ve had to do that in the time elapsed. Reminding me of the value of my relationships. Tinkering with the remnants of a routine and seeking to shape them into something substantial, and finally recognising everything I regretfully take for granted

Patiently, this era will end and we’ll remodel and rethink. Even so, that will still be temporary – a blip if you will on an incomparable past and indefinable future. We will all learn to survive to reshape as I myself must continue to do, embracing my autism, with both my failings and ablilites, letting myself become influenced yet never impeded.

On A Cliff Edge: An autistic transition to adulthood

I’ve noted before how I’m quite lucky for an autistic adult.

I’ve gained a degree, I’m in employment and enjoy my work. Despite the fact that I still struggle with socializing, I have a degree of upward mobility that makes that possible, if not easy. Its true that I’ve needed lots of help with each of these and without the support I received theres a fairly good chance I wouldn’t have got anywhere near where I am now. That said though, I recognize the privileges I’ve been granted, and especially since doing voluntary support work, I’ve come to appreciate them more.

I appreciate them as its quite shocking how many autistic individuals are not given the chance to become independent, not to mention those who are diagnosed later in life and end up wishing they could get those years of thier life when they went un-diagnosed back.

Whats been happening lately though is autistic people diagnosed as children in the 90s and early 2000s have been making the transition to adulthood, and the gaps in the support system are starting to show. Just 16% of autistic adults are in full time work. 79% of them say that with more help they would feel less isolated. This is leading at least one in three adults on the autism spectrum to suffer with mental health difficulties.

This is incredibly difficult to discuss, when most of the information about autism focuses purely on children. Theres some good research about the problems autistic adults face, but very little on what can be done to support them. This has lead some to describe the process of finishing high school as being comparable to a ‘cliff edge’.

In My Experience…

After the original course I was going to study at university was cancelled, I was able to find a route into uni which aided me in learning lots of the practical preparations which I would have definitely struggled even more with, had I not ended up doing a foundation year at Caerleon campus.

While the ‘specialist’ focus of uni means some autistic individuals get a lot from the experience, many end up dropping out – a problem compounded by a mental health crises where almost 9 in 10 students say they worry about isolation. In my first year in Cardiff, the support network I’d built up at Caerleon disappeared. This difference was highlighted through the kind of support I received. In Caerleon I had note-takers who acted as ‘buddies’, who would help and talk to me. When I bumped into one of them at Cardiff they explained how a change of rules meant that any extra support provided by said note-takers was now regarded as inappropriate, yet sympathized when I pointed out the obvious flaws. Throughout that year I spoke to barely anyone and barely left campus. I’d often use a form of ‘stimming’, that involved wandering the corridors, allowing me to get to grips with my emotions and the environment.

A lot of the problem here, is the obsession with independence leading universities to take a strict non-intervention approach. When I was at uni there were arguments between the student union and management about the funding of societies and communal spaces – something the uni were rather stringent on as ‘no student could possibly have any problems satisfying all thier needs in a capital city, right?’. Support exists for disabled students in the form of DSA, but only two in five know that the grant exists before starting thier course. Even those who do, often don’t apply either because doing so is hard or they don’t feel that they are ‘disabled enough’ to warrant support. Another form of help I received was mentoring, provided by the National Autistic Society. This gave me a sense of security in that I could confidently talk to my outreach worker about how I was feeling. Problem being, universities tend to treat these two elements as a placenta to remedying all the problems autistic students face.

I don’t want to make my university time out as terrible. In my second year I joined a rock music society through which I made friends, and developed confidence. That’s the same year I became involved in student radio, hosting shows on music and politics and started writing for outlets like Buzz mag, all of which allowed me to put my ‘special interests’ to good use, and start enjoying my time at uni again.

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My next plunge into the abyss as it were came with everyone’s favourite life event of looking for a job. I don’t need to bore you with what a laborious process that can be. Just to say that my first interview was at HMV, and did not go at all well. I turned up wearing a suit, and froze after the question ‘give me an example of someone who you think provides good customer service’, realizing that I wasn’t at all prepared.

Even though I didn’t deserve that job, unconscious bias can happen in these process’. The ‘16% of autistics in full time work’ figure has remained static since 2007. Navigating the oftentimes awkward social encounter of the interview is difficult for a lot of autisitc people, and even getting to interview stage often features the challenge of networking. During my first interview, I remember struggling to make eye contact and making long pauses, which may have affected my chances, despite the fact that these signals were unintentional.

I discovered the Change 100 programme almost through a stroke of luck. Through that I was able to secure a placement in an organisation where I still work. In my first blog, I discuss how my answer to the interview question ‘what are you passionate about?’ focussed on combining my passion for truth in journalism, with my trait for being honest.

Despite encountering difficulties I realise my privileged position in comparison to some people on the autism spectrum. This next section casts doubt on the idea that people become ‘less autisitc’ as they get older, and seeks to explore how we can help autistic adults on the cliff edge…

Leaving Autism Behind?

You’d be surprised how common the narrative about ‘leaving autism’ is. I’ve even had it said to me by my elderly relatives that they ‘were’ autistic. The New York Times have a long read piece titled ‘the kids who beat autism’. As you’d imagine, I’m skeptical…

A lot of the ‘evidence’ for people losing thier autism is based off of case studies. One study by psychologist Deborah Fein , published in the Journal of Child Psychology identified 34 young people who had achieved a so-called ‘optimal outcome’ whereby they no longer met the criteria for being autisitc. So for example, they developed thier communication, facial recognition and language abilities to a neurotypical ‘standard’, as well as improving thier executive function – thier ability to process multiple stimuli at once.

Another study tracked progress in a group of 85 children they had monitored from the age of 2 through to 19. Of these, 8 no longer met the criteria for diagnoses by the end of the study, and required no extra support.

May I suggest however that considering both these studies were focussed on children, the results may be slightly clouded. That’s not to say the studies are entirely inaccurate. I’m willing to accept that among a minority, autistic traits may become less notable overtime. However, my reservation is that what looks like recovery might be learning to adapt to a neurotypical-majority world.

I don’t remember much of my childhood except feeling sensory overload. I’d frequently have panic attacks when I was on my own, loud environments like cinemas and events were often far too much for me to handle, and my communication with others was severely limited to the point where I just didn’t talk a lot of the time. You could look at me then and mistakenly say that I was ‘more autistic’.

However, as highlighted earlier, I still struggle with all those elements. I still flounder to interact on a person to person level, in a social environment, often resorting to repeating a series of leaned attributes which I know help to move a conversation forward. In loud, busy environments I can and do become overwhelmed. Still, I cope with them more often than not as I’m used to those situations, and can regulate my emotions. Whatsmore, I do not like being on my own, or being surrounded for periods of time, often switching between the two. So you understand, my emotional and sensory response to most stimulus is still heightened, yet I am helped through a series of coping and ‘masking’ abilities.

While theories about a literal ‘recovery’ from autism may not be widely believed, the idea that autistic people need less help as they mature, seems to be. The interacting which takes place in higher education, in public spaces or through work can take a serious toll on an autistic persons mental and even physical energy. Spending time alone acts as a means recuperate from that burnout. For that reason, I need the security of knowing that other people will understand when I’m quiet or uncooperative, because of an experience which has sapped my mental energy. Likewise, I do often need the comfort of having people to talk to and being around people who respect my differences, showing why education about autism is so important.

Even if, theoretically, autism were something that you could recover from, would you necessarily want to? To some autisitc people the answer to this question may be yes, but I’m not sure what a non-autistic version of myself would look like. By stripping me of my autism wouldn’t you also be taking away my special interests, and my unique view on the world?

A lot of the ‘evidence’ for losing autism is flimsy at best. Many of the people whose autism symptoms appear to subside still require extra support. A children’s evaluation centre in New York, found that 38 children diagnosed with autism over a 10 year period no longer met the diagnostic criteria, but still struggled with attention deficit issues, struggling to control thier mood and social anxiety. These showed up especially as they left childhood and began the difficult transition to adulthood.

Some parents interviewed in the New York Times article cited earlier called these “lingering” difficulties. And again, I’m not a scientist but may I suggest that while these people may have developed cognitively in such a way that dosent meet standard assessments of autism, should we really be saying that these people are not autistic anymore, if still display autistic traits? Indeed, the definition has widened in recent years to encompass ADD and to tie more of these traits under the ASD banner. If that means we can provide support to those who need help, I regard that as a positive.

“Autism colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with”

Jim Sinclair, An Open Letter to parents of autistic children

An Atypical Perspective…

Support can be a pathway to independence: I don’t want to speak in absolutes. It might be the case that some people learn independence from a lack of support. However, things like mentoring, support networks, understandable language, and ‘buddies’ to accompany me in crowded and social environments have all been cornerstones in developing my independence. I’ve often lapsed into old routines of dependence when I didn’t have any support. Obviously support can and should be altered at different stages in a stages in a persons development but treating it as a form of ‘hand holding’ thats antithetical to achieving independence is neither accurate or useful.

Talk of ‘recovery’ from autism is unhelpful: We can talk about learning to live with or better understanding autism but the evidence of a literal recovery is not supported by brain scans, and the behavioral studies only show a diminishing in some of the traits necessary for a full diagnoses. I feel at least until we understand more about how autistic people often ‘camouflage’ thier autism to fit in, and about all the different symptoms, talk of recovery may serve to deny autisitc adults the help that they need, doing more harm than good. Instead, we should be seeking to broaden our understanding of autistic traits so that we can better support autistic individuals, both through childhood and into adulthood.

We don’t need to ‘recover’: The coping strategies and emotional growth that occurs within autistic people is largely positive, just as development is to be welcomed in any person. Of course, theres also the activity of camouflaging your autism, which expends a significant amount of mental energy – part of the answer to that is to build supportive societies and systems. Even if we knew that recovery from autism were possible I ask this…why is not being autistic more of an ‘optimal outcome’ than being an autistic person with a career, friends and a level of independence? Why would struggling with social cues and needing to retreat occasionally be more important than the fact that they can interpret complex data, create mesmerizing art, or tell you about nature? Shouldn’t we be striving to make autistic people happy and successful, seeing autism as an asset rather than an Achilles heel?

React Responsibly: Normalcy and ‘Cancel Culture’

Earlier this year videos circulated on TikTok of people doing the ‘Autism Challenge’ which, consists of making fun of autism by speaking and moving “In a way an autistic person would”. The challenge was rightly met with uproar from charities, while groups like Reclaim the Net who argued that to shut those videos down would be an example of “cancel culture”.

An example that might hit closer to home for a UK audience is Ricky Gervais’ show Derek. After the show aired, objectors criticised it on the basis that they saw the show as mocking people with learning difficulties. Gervais denied that he’d ever intended the character as having a disability.

That said, this throws up some interesting questions about how we talk about the interpretation of the artist vs. the role of the author. Does it really matter what Gervais intended? If we object to the mocking of disabled people on Tiktok, should we also object when a popular comedian does exactly the same thing? and is the outrage justified?

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A group of 152 academics and celebrities recently signed a letter condemning cancel culture. Interestingly, they started by praising the work of Black Lives Matter and saying that Trump represents a threat to democracy. This wasn’t an immature denunciation of ‘canceling’. Rather, the letter alleged that:

“While we have come to expect this on the radical right, censoriousness is also spreading more widely in our culture: an intolerance of opposing views, a vogue for public shaming and ostracism, and the tendency to dissolve complex policy issues in a blinding moral certainty”

Harpers magazine, A letter on Justice and open debate.

Here’s where the issue becomes muddled. The letter has been criticised for being too vague. No one would deny that Weinstein deserved ‘cancellation’. If we’re referring to people with opposing views, what sorts of opinions? Do Info-Wars count? an outlet who’s conspiracy-babbling has led to literal acts of terrorism. Or are we referring to figures like JK rowling and Graham Linhen who have made uneducated comments about Trans people, leading to some debate as to if the backlash really counts. No one, it seems can agree on a definition or on what cancelling is justified or unjustified.

Heroes vs. Villains?

I’ve been tempted to refer to what has happened to some creators as ‘cancel culture’ in the past, yet the term frustrates me. Its like ‘fake news’, which describes ideologically motivated untruths circulated on social media, but does nothing to describe how misinformation is so prevalent:

During my dissertion I interviewed Nick davies who famously investigated the second phase of the phone hacking scandal. He pointed out that:

“The internet has allowed non-journalists not only to consume the news that fits thier prejudices but also to generate it, thus creating self-reffering whirlpools of misleading information in which falsehoods are exchanged within groups with the effect of reinforcing prejudice. If you see those two process’ interacting you see that we are entering an era of information chaos”

Nick Davies

I think we can also apply this logic to ‘cancelling’. On much of the internet, debates lack nuance. Through a process known as abstraction controversies are reduced to generic statements. So – and I say this as someone who really does not like Gervais’ comedy – the statement ‘Gervais presented an offensive and ill-informed portrayal of autisitc people’ becomes ‘Gervais is an abelist’. Using this process we go from criticisng a persons work to insulting and smearing the creator.

Like being in a busy room, reading about ‘cancelling’ results in sensory overload. With my autism, its easy for me to see the world in stark terms, and to react as if I’m in a play of heroes and villains.

Jon Ronson excellently explores this concept:

“I favour humans over ideology, but right now the ideologues are winning, and they’re creating a stage for constant artificial high dramas, where everyone is either a magnificent hero or a sickening villain. We can lead good, ethical lives, but some bad phraseology in a Tweet can overwhelm it all – even though we know that’s not how we should define our fellow humans. What’s true about our fellow humans is that we are clever and stupid. We are grey areas”

Jon Ronson, So You’ve been publicly shamed

An example where I think this can be applied is with the play ‘all in a row’ where the autistic character, is portrayed by a puppet. Upon debuting, more than 12,000 people signed a petition arguing for the shows cancellation saying that the decision not to cast a real life actor “dehumanizes autistic children”. Do I think that the decision to cast a puppet was misguided? yes. Do I think that the intentions of the writer were bad? of course not.

For clarity, I’m not saying that you can never judge a persons personal attributes by thier actions. You can, especially when that person has a large degree of power – e.g Trump – or they consistently refuse to learn – e.g JK. Rowling. However, with our pervasive thinking we often end up shaming well intentioned people when all that’s required is criticism and a willingness to engage in a conversation.

Audiences and artists

“I am the son and the heir of a shyness that is criminally vulgar. I am the son and heir of nothing in paticular. You shut your mouth, how can you say I go about things the wrong way. I am human and I need to be loved, just like everybody else does”

The Smiths, How Soon is Now?

The Smiths acted as a champion of the outsider. That was why I was baffled when thier frontman, declared his support for the far right ‘For Britain’ party and started repeatedly posting white supremacist videos to his social media. Its easy to see how this might do damage to the Smiths original point, and leave people who were fans feeling betrayed. Make no mistake, Morrisey is a racist and we can make a judgement about him based off that.

That’s quite a pertinent point. We’re talking about stigma attached to certain points of view, right? But what about stigma attached to identities. Can you be ‘cancelled’ just for being yourself? Because a lot of people in minorities would liken the experience of discrimination to that of being isolated and shut out. Autistic people can definitely feel that, especially those who haven’t been diagnosed, and struggle to make sense of themselves. As the Interactive autism network says, a lot of the stigma attached to autism can invite “a loss of a feeling of normalcy”.

In response to the kind of ‘transgressions’ we hear from Morrisey, its quite common to hear calls to ‘separate the art from the artist’.

This demand links to the theory ‘death of the author’. In his essay, Roland Barthes argued that a piece of work and the creator are unrelated and that authorial intent dosen’t matter. That “Literature is the trap where identity is lost, beginning with the very identity of the body that writes”

However, just as the Smiths are rooted in a counterculture of being welcoming and open minded, so is every text informed by the context in which the author writes. Separating art from the artist dosent work in that a representation of autism from the 1970s is likely to be different to a representation today:

“Literature can impact on society, either effecting or reflecting change in views. The way humanity thinks has not stayed uniform, and literature is constantly evolving. To say that there is nothing ”original” in the often rebellious ways people write to enact change or voice opinions that have been suppressed doesn’t seem right”

Idid’ntwantanyflowers blog

Sometimes the anti censorship movement deserves lambasting, especially when people like Morrisey defend thier bigotry. Still I’m aware that those views do not represent everybody who resents public shaming. The same nuance applies to social justice crowd. The culture of mob justice can be dangerous in the wrong context. However, empowering minorities to speak out against harmful representation or certain figures in the public eye, can do as much good as harm.

To overcome the negatives, we should embrace the new wave of entertainment that seeks to learn from its own flaws. We can see this approach in two things I’ve been enjoying: the musical Hamilton, and the Netflix show Atypical. Both of these have faced ridiculous calls for cancellation. Despite that, the creators have often tried to engage with critics, to understand and even act on the limitations of their work.

What about those who have refused to apologise for thier mistakes or are bad people? I think a good way to approach this is not to be judgmental of other fans. Different people will draw the line in different places. As a music fan, I no longer to listen to the music of Kasabian or Morriseys solo work. I do still listen to The Smiths and Brand New, largely because the music means enough to me to still find comfort in. I’m sure there will be many who still are still inspired the Harry Potter books, which goes to show that even without crow-baring the artist away from the art, there are ways we can reclaim that which we love.

An Atypical Perspective…

Debates too often lack nuance: I often feel like I’m in a constant battle between two sides of myself: the side that’s idealistic and wants to frame everything as a war between good and evil, and the side that has an eye for detail. This is why I’m frustrated when debates – particularly online ones – take a surface level approach to criticism using attacks and misrepresentations in order to insult an opponent. I’m well aware that its rarely worth debating toe to toe with bigots or ignorant people. However, I still consider criticizing their ideas in a detailed way useful and necessary.

You can’t (entirely) separate art from the artist: Personally, when I find an album or a book I like, I want to know everything about the creator and where they got thier ideas from. An artist always puts thier experience into thier work. Its why ‘rain man’ – a film that was made early in our understanding of autism, differs from ‘the good doctor’ – a show which, while flawed, paints a detailed picture of autism. The demands to ‘separate art from the artist’ ignore the social significance texts have to thier time period, and stops audiences from engaging with creators in a way which might be educational.

There should be more communication between authors and audiences: This will help us identify artists who care about thier representation, and audience members who have legitimate criticism. Take Atypical: after the first season the show received criticism for portraying Sam’s character as sort of an archetype of every autistic trait. In response, the writers listened, engaged with autistic critics of the show and corrected thier mistakes. Manuel Miranda despite not making any major changes to Hamilton, has been very welcoming of criticism. This approach may help to create a less noisy media environment whereby creators seek to learn from audiences, and criticism is handled constructively.

Contrasting Fascinations: On Obsessions and Special Interests

If you were to ask me what my main ‘special interests’ are I will quickly say music and politics –

I first became engaged in politics around 2011 when the second phase of the phone hacking scandal was wrapping up. Having watched the events transpire and done research to fill in the gaps, I was shocked that a countrys press could have engaged in illegal activity and inspired by the fact that a small number of good journalists could face up to a media conglomerate. The conceit that news corp had bribed and gagged the victims, that everybody at news of the world knew what was going on and that the met had sat on evidence of thousands of phones being hacked into was befuddling to my naive mind. All the way to the revelations about Milly Dowler and the 7/7 attack victims, I felt caught up in the intrigue, having a compulsion to know about every tiny detail.

At the same time I was first coming to develop friendships, mainly through an explorer scout group that I was part of. While I still found socializing incredibly difficult, music gave me a subject I could talk with other people about, as I’d been collecting records, taking my lead off of the music my parents liked: Queen, Pink Floyd, Black Sabbath. When I get into an artist I become intrigued to know the precise musical movement they form a part of, and where they fit within the tapestry of music as a whole. Through that realization, I eventually joined communities of writers, and music journalists who were just as enthused about the subject as I am.

In a world that’s increasingly difficult to make sense of either through the anxiety brought on by societal events, changes to my routine or the heightened sensory environment I’m living in, music and politics act as a constant – elements that are always there but are constantly evolving in different directions, which can be charted and analysed, lending a sense of order and intrigue to my life.

This blog will look at thier uses, thier pitfalls, and more importantly the way we discuss autism with regard to special interests and obsessions.

Understanding Special Interests

Despite being branded a mainly autistic trait, obsessive and repetitive behaviours is something most neurotypical people do as well. Research from 2010 published in the Journal of medical humanities, found that despite struggling with communication many autistic people find a natural home in online communities where they can carve out identities.

More that this, the study found that the standard perception of neurotypicals within these groups is that they have communication problems, relying on generic means of body language that don’t actually convey emotion all that well. Some online groups for autistic people pointed to the neurotypical obsession with sports and sport operas, while one even came up with the name of a condition which they called ‘neurotypical syndrome’ which they defined as:

“ a neurological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.”

This might appear subtly mocking, but altering the way we think about the so called ‘normality’ of neurotypical mind, might provide a clue with how we think about the occasional obsessiveness of autistic people. We’re living through a time of climate change, pandemics, political upheaval and mental health crises. More people have been diagnosed as we’ve learned more about autism. More than ever, autistic people want a voice.

Responding to ‘Obsession’

In 2017 the student Damon Smith planted a smoke bomb on a tube train carriage. The device thankfully did not go off, though Smith was sentenced to 15 years in prison. As soon as it was revealed that Smith was autistic, information about his special interest in weaponry and mechanics flooded the news articles. Even the judge at the time stated that “I am influenced by your history of preoccupation with weapons and bombs, as well as by your condition, which makes it difficult for you to empathize”

While Smith was motivated by his special interest, the problem in the Judge’s comment is that it presents special interests as a symptom of a condition. Tory minister Oliver Letwin did the same thing earlier this year, commenting that national security is at threat by “some autistic person or some strange youth sitting in some place in the world who’s connected to our network by the Internet”. This shows an example of autistic people being defined by a stereotyped obsession as being ‘tech geniuses’, and that being presented as a threat.

Occasionally, Autistic people attract attention for the wrong reasons. In 2015, an autistic teenager Peyton Pruitt was arrested for sending bomb making instructions to someone he believed to be in IS.

Although rare, autistic people may be at risk of being radicalized. To explore this idea we need to explore the role ideology plays in terrorism and the idea of ‘lone wolf’ terrorists, who operate without significant contact with others. These people don’t need to spend years in militant groups. They just need to win themselves over on an idea.

Research by Clare Alley from 2017 points to numerous risk factors which may lead an autistic person to become radicalized. Obsessiveness and repetitive behaviours are given as one example, but this is in conjunction with”searching for a need to matter” or social connection. This demonstrates how special interests are important factors in the need to feel part of something: an urge that extremists exploit in thier targets for recruitment. Sensations of sensory overload caused by trauma can also lead to violent behaviour.

I’m using terrorism here as an extreme example – its easy to see how becoming too obsessed with any one lifestyle is negative. However, its frequently the way we choose to respond to these that makes the difference, both between how autism people express themselves, and – crucially – the consequences for autistic people who develop a passion.

Journalist Ian Birrel has done research into autism and more specifically the institutionalisng of autistic adults, sometimes after they become caught up on ‘special interests’. Its notable how they don’t necessarily need to be inherently harmful ones like terrorism or drugs, for this to happen:

“One mother told me of how her daughter also became impassioned over injustice, focusing on human rights issues with a moral clarity and vigour that drove away friends and freaked out their parents. As her anxieties intensified in adolescence there was inadequate support. She ended up in both NHS- and privately run hellholes, learning self-harm from other patients, secluded and restrained”

Ian Birrel. on the ‘cruel and destructive’ conditions children with learning disabilities have been kept in around Britain

Obsession can lead to dangerous outcomes but analysis of dangerous, obsessive acts committed by autistic people needs to go beyond pointing to the offenders autism as a reason. The point is not to shut people with special interests away or to treat them as a symptom but to have those discussions with support networks, with parents, with teachers, ans crucially with autistic people themselves so that they can learn to express thier interests in a safe way.

Harnessing Fascination

On a different note, it goes without saying that autistic people can also be inspired to do good in the world and throw themselves behind worthy causes. Case in point: climate activist, Greta Thunberg.

Her work teaches us as much about autism as it does about climate change.

Thunberg has expressed how she became depressed at a very young age when she realised the insurmountable challenges the human race is facing from environmental collapse. That’s what its like to be autistic for some. You see things through a wide angle lens, which inspires a mix of inspiration and exhaustion. Sometimes, the inherently political, societal lens some of us see matters through ends up causing us great inspiration and a desire to make the world a better place. It can also inspire distress and meltdown, as we grow attached to a passion, a cause a movement, and thus feel crushingly dejected to see matters take a turn for the worst.

However, its also through her autism and her activism that she shows people how it can be possible to think differently. She herself has admitted that her passion is partly down to seeing the world differently, and thus is able to rest her arguments in simplistic, difficult to refute language: ‘Politicians aren’t doing anything to safeguard our literal future on the planet, so whats the point of going to school?’ For this reason, her position as a public figure is important.

“It makes me see things from outside the box. I don’t easily fall for lies, I can see through things. If I would’ve been like everyone else, I wouldn’t have started this school strike for instance.”

Greta Thunberg

Its not just Thunberg. Plenty of autistic people have harnessed thier ‘special interests’ in inspiring ways. Los Angeles firm Auticon employs exclusively autistic people to work on and and tech innovation. Environmentalist Chris Packham, has a great documentary in which he explores how his autism has helped him, using that as a jumping off point to explore some of the autistic individuals making pioneering strides in tech and innovation. Indeed, some of the greatest inventors and scientists including Alan Turing and Albert Einstein have been rumored to have been autistic.

Really speaking, autistic people shouldn’t need to prove themselves in great ways to have thier special interests accepted. Don’t get me wrong, the voices of people like Thunberg can be important when autistic people are still being treated as a threat, and even shut away in dehumanizing ways.

Before I discovered my special interests in music and politics, I often felt quite cut off and isolated from my neurotypical peers. I still get that occasionally, but through my degree, my work, my music journalism, I’ve got plenty of opportunities to network and interact with people within those spheres. Whatsmore, my autism gives me a unique perspective, allowing me to bring something new to the table. It took a while for me to harness my autistic traits into something useful, and I’m still trying to work out how I can put them to use. Different autistics are at different stages in that progression. Its important that they have the opportunity to discover what they are good at and develop it in a healthy and liberating way.

An Atypical Perspective…

Neurotypical obsessions aren’t necessarily understandable: Something I’ve noticed from atypical traits is that they’re very expressive. This is due to the fact that we react in a hyper sensory way to stimuli, which also explains why we grow so attached to a song we like, or a hobby we enjoy. Contrast this with neurotypical traits, whereby that obsession with conformity often causes neurotypical people to communicate in a set of socially accepted gestures and tones which often make them hard to read, for autistic people anyway. I’m not sure what to suggest for this point, beyond the notion that neurotypes should perhaps be accepting when misinterpreted or not understood by an autistic.

Negative obsessions go beyond autism: This should perhaps read ‘all obsessions go beyond autism’ as its never the only reason we become fixated on a subject. However, its autistics who do bad with thier interests, that get a significant amount of media attention. Any interest properly focussed and understood can be used in positive ways, just as any interest which overtakes your life and which you receive no help with comprehending can be destructive. To begin to help autistic people develop thier interests as something positive we must stop discussing them as negative symptoms harmful to individual and societal wellbeing, and instead start talking about the massive opportunists that ‘special interests’ open up when properly nurtured.

‘Special interests’ have lasting positives: An interest in politics properly understood can open up pathways into campaigning. An interest in science can open roads into data or inventing. An interest in performance can help someone make inroads into art, music or theatre. We’ve seen how autistic people can achieve a lot with thier passion, and the unique insight they have gives them a new perspective on thier work. Sometimes an interest takes 15, 20, 25 years to properly find. My one piece of advise is to make sure you find opportunities where your passions can be properly expressed, but be prepared for that to be in places other than where you expect. I started off wanting to do creative writing. It wasn’t until later that I realised how much I enjoy journalism and being overly opinionated. That road of self discovery is one I’m still on, and one I will likely remain on for a long while!

Navigating the Unexpected: On dealing with change

Caerleon Campus

In applying for University, I took a different approach to most: I only had one choice. I get quite sentimentally attached when making a decision, to the extent that all other options end up being disregarded, and thinking about my future had already caused me a great deal of anxiety.

I’d applied for English and Creative Writing to study at a University in Caerleon. A few months after I’d got the grades, I received an email: ‘We regret to tell you that the course you applied for is no longer available’

Here’s an example of where I’d set up an expectation in my head, with a ‘what could go wrong attitude’ and felt it crashing down painfully.

They did offer me courses that weren’t too far detached from the one I’d applied for. However, my confidence then was extremely lower than it is today, and for better or worse I did not think myself able to stay in or even commute to Treforest. I do find myself questioning what would have happened if I had taken that route. Through these circumstances you end up developing a glib belief in fate by which you don’t actually believe in pre-determined pathways, but force yourself to see events in your life as predetermined by virtue of thier significance.

I ended up studying a foundation course for a year in Caerleon. During that time I grew my confidence massively, and developed an interest in media and journalism – which I studied in Cardiff for my degree. This decision continues to resound in my life today, and while I do not want to go further than that at this point, I am happy with where I stand right now.

I go back to this story as an example of navigating the unexpected. Its an example of where a massive change in circumstances, forced me to completely recalibrate my plans, and set me on a positive footing for the future – arguably more so than if that had never happened. And although the event caused me great anxiety at the time, it very much determined the path my life would take in numerous ways. This blog post is about navigating those unexpected events, and learning to deal with them mentally and emotionally.

‘Magical Worlds’

The science behind autistic people dealing with change is far from simple

There are theories to suggest that autistic people can learn about the changeability better than neurotypical people due to thier ability to think from the bottom up, rather than the top down. I’ve been through this before, but the basic premise behind this idea is that most people make judgements based on quickly computing past experiences, while a bottom up approach utilities detail first. This goes some way to explaining why some autistic people excel in the arts or data, yet are less adept at making quick, fast decisions based off of incomplete information about the precise subject matter. So the theory goes, the lack of expectation about how things ‘should’ work out, alters the way autistic people think about changes in thier circumstances.

Indeed ‘magical world’ theory, as its been titled proposes that autism’s most notable traits are manifestations of a lack of ability to predict ‘what happens next’. The name of the theory refers to the slight of hand which allows for the element of surprise to take place. Its also quite appropriate in that as a child, I’d often imagine magic in every element of the world, again owing to how my creative side allowed me to see the world differently.

However, heres the issue. The theory argues that the bottom-up approach to thinking is of great benefit to autistic people, in that it allows them to soak in and understand detail, going on to say that the same way of thinking underpins the way autistic people communicate, the hyper sensory way we physically and emotionally perceive the world, and – if you’ll bear with me while this blog gets confusing – our difficulty in accepting changes.

So, I bet at this point you’re probably thinking ‘hang on, so are autistic people good at adapting to changes or aren’t they’. I guess the first answer would be that no two autistic people alike. More than that though, there are lots of different types of change, and where different autistic people draw the line will depend on them. My dad who I see most weekends has a dog that’s by no means quiet. One weekend, Samuel Peeps for that is what we decided to call him (yes, most of my family is like this), was staying at the house of another relative. It took me about a day to notice, reason being that I was paying attention to my immediate environment, not what I expected that environment to look like. That said, I find large scale changes in my routine very difficult to adapt to.

While something like a change in our immediate environment may go unnoticed, a forced change in the way an autistic person lives thier lives might be incredibly anxiety inducing for them – a routine, we can predict and understand and without that sense of control its possible to feel overwhelming loss and powerlessness. On another note, normal communication requires a degree of predictive behaviour as it involves gauging traits like body language, tone of voice, mannerisms and reacting accordingly – a deficiency in prediction presents a different way of looking at why autistic people may struggle to understand conversational traits. Even the emotional and sensory ‘stimming’ we go through by rocking back and forth, flapping hands, fiddling objects could be interpreted as a way to manage and comprehend the unpredictable sensations and feelings which the world throws at us.

“Our predictive skills are what allow us to fruitfully interact with our environment and interpret observations in the context of what has transpired before. Without these skills, the world is likely to appear chaotic. This seemingly capricious environment induces anxiety, the feeling of a loss of control and, overall, a sense of being overwhelmed. Attempts to interact with the world, or to interpret it, will be devoid of the modulatory effects of prior context”

Kjelgaard, Autism as a disorder of prediction in a ‘magical’ world

There’s no guarantee that ‘magical world’ theory is correct as its based more on testimony and observation that on any kind of in depth psychological study. Regardless of that though, it presents an interesting way of looking at the traits in autism, our difficulty in habituating different sensations and traits, and – for the purposes of this blog – adapting to the unexpected.

Autistic Burnout

I started this blog by remarking on my tendency to get fixated on what I’m used to, and making clear the impact that a massive personal change in my circumstance had on me. Part of the reason I was so upset when this happened, is I’d bound so much of my hopes for the future and my expectations up in this one pathway. I didn’t really know how to think of anything outside of that, and didn’t want to. Quite appropriately, considering the course I’d applied for, I had a sort of picture in my head as to what my future would look like and was then asked to completely reevaluate that. There have been numerous cases of that process taking place in my life in different scenarios.

The weeks that followed focussed on talking to careers advisors, support workers, getting pushed this way and that by teachers and lecturers alike. The entire ordeal was incredibly emotionally draining and uncertain. It wasn’t until I spoke to someone I was friendly with who happened to work on applications for the foundation course, that any sense of optimism for the future was restored. During this process I was experiencing something, that I later realised as ‘autistic burnout’.

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate support. It is characterized by pervasive, long-term exhaustion, loss of function, and reduced tolerance to stimulus”

Raymaker et al. Defining Autistic Burnout

The discontent between expectation and ability is what I want to focus on here – I’ve already mentioned how sometimes preconcieved expectations can cloud my judgement, and how a disruption in that facade of order and peace can make my world seem chaotic. In a way, part of the reason I was so happy with the foundation course I ended up studying is due to the fact that it was in the location I had originally set my sights on and contained similar elements. The point though is this process involved cycling through options and making quick decisions and not having the ability to comprehend them. The signs of exhaustion were obvious and I found myself actively seeking solitude in order to just find some time to myself, and to escape from a world which seemed extra noisy and more disconcerting as a result.

This is something that can occur when an autistic person loses touch with a friend, loses thier job, is disappointed by a cancellation of plans, or suffers a major blow to thier routine. Look at the hashtag #Autisticburnout and you will find hundreds of people grappling with cases where circumstances have thrown a spanner into the works of thier expectations, leaving a void of confusion and anxiety. The term has developed its own culture despite the lack of a concrete definition or academic study surrounding the phrase. One thing I will add is that you get major burnouts like the one I’ve described which last a few months and then pockets of burnout which last a few hours to a day and which I experience quite regularly.

Dealing with autistic burnout is another issue, and one I’m still trying to work out for myself. The first piece of advice I’d give is not to overwhelm yourself in response to burnout. Don’t let yourself become further exhausted by trying to find a solution as fast as possible. Allow yourself a degree of retreat by engaging in hobbies and letting yourself temporarily forget about the disruption. Also importantly though, surround yourself in a support network of people who will not try and throw answers at you, but will listen to what you’ve been going through, while letting you express yourself. I personally find something that helps me is learning about myself, why I’m feeling the way I’m feeling and reminding myself that I’m not the only one to experience my emotions. When my thoughts won’t control themselves, I write things down in neat little paragraphs, sketching out routines for myself – making space to consider the solutions if that’s the nature of the problem, otherwise setting out my routine in a way which will allow me to best move on, or keep my mind elsewhere.

An Atypical Perspective…

Autistic people adapt to unexpected changes differently: The common example of this that gets mentioned is a car horn. Personally, one car horn might take me by surprise and make me jump. Others might be more sensitive to noises like that. Overall, while I don’t frequently notice small changes which affect what I’m seeing or hearing, changes to my routine or my environment make me feel a sense of uncertainty and fear. Understanding your personal threshold of dealing with change or the unexpected – or if your part of a support network, understanding another persons – is important as it grants that self awareness of knowing whats causing those feelings which arise from changes to our environment, which then allows us to regulate how we react to them.

Autistic Burnout is real (and distinct from other types of burnout): Burnout is a sensation everyone experiences, usually describing sensations of exhaustion, depression and doubt. This is not to trivialize anyone’s experiences. Burnout in any scenario is a horrible feeling to have. Here I’m specifically referring to the form autistic people experience whereby circumstances contradict or ruin our original expectations, past the threshold we can tolerate, thus leading to feelings of insecurity. These have the potential to ‘disable’ us or send us into spirals of retreat or anxiety, sometimes until a sense of order is resolved. Dealing with autistic burnout will first require more acknowledgement of its existence so more research can be directed towards the concept. More than that though, its important to have those support networks and coping mechanisms in place, especially for when burnout occurs.

Overwhelming environments require a societal and individual response: For those of you that read my last blog post, I noted how current circumstances have made our world less noisy and hectic, exposing how ‘sensory’ the world can be. For individuals its obviously beneficial for us to sometimes switch off when we are experiencing sensory overload, preferably before reaching any sort of burnout. For communities creating those support networks and buddy systems can be really beneficial. On a societal level, it might be worth questioning which elements of our world can we strip back, in order to detract from that sense of sensory bombardment. Roads rearranged to make for a more accessible city centre, less glaring lights and music in every shop, more accessible application forms – these are small changes which can make all the difference, and may help autistic people – and perhaps all of us – live less stressful lives, which will help us cope when we encounter changes in them.

A Remedy for Loneliness: Mutual Aid and Autism

I enjoy being around people,

That might sound strange, considering stereotypes around autism. I don’t always like being around people. Its not unusual to find me secluding myself for a few hours everyday, recuperating from the sensory overload which comes from feeling crowded. That said, I do enjoy the sensory stimulation that camaraderie brings.

Socializing and being around others be that in a workplace, at a concert, or in the comfort of our own home is very much a part of our society…most of the time. When talking about autism the issue of loneliness gets swept under the rug as ‘they’re used to being alone’.

When I did voluntary support work for autistic adults some would find comfort in a level of seclusion, but most would like some form of interaction. So while some enjoyed the humm of city life more than the walls of thier living setting, some actually felt incredibly cut off in busy environments. There is after all, more than one way to feel lonely.

That last point is what I want to focus on. The different types of loneliness, and how mutual aid provides a blueprint for helping autistic people to be part of thier community. Behind any serious effort to combat loneliness though, has to be a willingness for communities to come together as a movement to form ‘spontaneous, long-lasting, and beneficial associations’

Loneliness

A complicated issue which effects many groups, according to the National Autistic Society, 79% of autistic adults feel socially isolated.

I can personally relate. I’ve described before how sensory stimulation can be overwhelming. However, its friendly environments where I feel happiest. I mainly become overwhelmed when I’m in a sensory environment that I’m not a part of. Picture this: you’re in a crowded festival, the streets teem with revelers. The sounds and sensations of liveliness are all around you but you’re not part of any of that. You can’t find your friends, though you certainly don’t want to leave. Confusion sets in. Confusion turns to panic, anger and frustration. You’re in a busy environment, yet you’re isolated.

A significant amount of research into autism has focussed on children. This often leads them to becoming more isolated as they grow older and try to adapt to the world around them. Its important to realise the effects that a sense of isolation can reap.

Autistic adults are at a higher risk of physical and mental health conditions including depression, diabetes and heart disease. They are also more likely to die early. Indeed, the impact of loneliness has been scientifically estimated to be as damaging as smoking 15 cigarettes a day.

Without the support network they need – and sometimes without even having been diagnosed – adults with autism struggle to to access housing and medical services. When I was an outreach worker I encountered individuals whose lack of support had forced them into group homes where they were not physically alone – if anything some of the homes I went to were overcrowded – but experienced a sensation of loneliness, whereby they felt thier sense of routine and emotional support broken. I felt a huge degree of responsibility knowing that I was sometimes the only person providing that familiarity.

Houting argues with reference to covid-19 that many autistic people were already experiencing that sort of isolation brought on by lockdowns:

“There is a vast difference between choosing self-isolation out of preference, and choosing—or being forced into—self-isolation out of necessity. Many autistic and otherwise disabled people live lives of isolation not motivated by preference, but motivated by self-preservation. Exclusion, bullying, harassment, and abuse; inaccessible physical and social environments; and a lack of appropriate services and supports can mean that for many, self-isolation is the only option. Now, the broader community is being faced with the circumstances in which too many autistic and otherwise disabled people find ourselves every day. I can only hope that this might engender empathy for our experiences, and prompt more allies to work together with us to build inclusive, accessible communities when this crisis eventually ends”

Jac den Houting, Stepping Out of Isolation: Autistic People and COVID-19

This is part of the reason why autistic people as well as support groups emphasise the value of social connection. Its vitally important for autistic people to have support networks and ‘buddies’, in a way which transcends the traditional ‘helper-helped’ relationship….

Mutual Aid

“The mutual aid tendency in man has so remote an origin, and is so deeply interwoven with all the past evolution of the human race, that is has been maintained by mankind up to the present time, notwithstanding all vicissitudes of history”

Peter Kropotkin. Mutual Aid: A Factor In Evolution

Traditionally, help available to autistic people has reflected a ‘helper-helped’ relationship – whereby an autistic individual is allocated a support worker who assumes the responsibility of helping that individual. While there’s nothing wrong with that, within restrictions of resourcing and having to have activities ‘signed off’, any approach which focuses purely on formal methods of extending help will likely be inadequate.

With Covid, Mutual aid activities began small scale; delivering essential medicines and food, though many have gone further through activities like cooking healthy food for those who are shielding, setting up helplines, holding virtual meet-ups, and raising money for households who are suffering the financial effects of the crisis.

While it is true that many autistic people are eager to return to the outside world, the extra sensory stimulation of the new environments fostered by social distancing might be difficult for autistic people to comprehend at first; This is where the traditional activities associated with mutual aid are really useful. For many autistic individuals having people from thier communities deliver supplires, or form a ‘bubble’with them, might be incredibly affirming for thier health.

Covid has exposed how sensory the outside world can be. Social distancing guidelines are encouraging roads to be closed, for people to walk on one side of the street or for music to be turned down in shops so that people don’t have to speak loudly. I don’t think people truly recognized how ‘noisy’ the world was. Which elements of the new world we want to keep is a subject for another blog post, but the long term effects of widespread mutual aid programs may bring people metaphorically closer together, creating communities of positive reinforcement so that all people – not least those who are autistic, do feel safer going to the shops, going for an appointment or seeing live entertainment.

“The real, pivotal impact that Mutual Aid groups have had during this crisis demonstrates the potential of community power. More specifically, it demonstrates the potential of a less formal, community-led, and more human way of thinking about responding to people’s needs, outside of the traditional public service framework that is the established and dominant model of deploying support. With extraordinary speed, the most successful of these groups identified the most critical needs in their communities and met them with a holistic approach that has strengthened the local social fabric and improved all participants’ wellbeing in a time of crisis”

Communities vs. Coronavirus, the rise of mutual aid

Part of the strength of mutual aid groups is thier spontaneous and horizontal nature. The point is not putting people in charge. Rather, people are coming together as equals to solve a problem, whilst evading traditional routines of management and administration. For that reason they rely largely on people trusting each other; In the case of the coronavirus this has allowed groups of volunteers to reach people quickly.

Challenges come through attempts to control aid groups by authorities. A quote by a volunteer, cited in the rise of mutual aid report states that: “The council wants to professionalize everything. They want groups to fit into their corporate plans. It’s really unhelpful.” For that reason it is important that councils take a facilitation approach in helping to connect different groups, budgeting and working with local businesses and charities to be part of mutual aid programs. This approach helps to retain the horizontal, community minded approach to working, without centralizing decision making or slowing process’ down.

One sticking question that I will conclude on, is the extent to which the concept of mutual aid is political. Those struggles over top down vs bottom up organising prove to me that the idea is at least in part political. That said, one of my traits is a tendency to see everything through a societal, wide angle lens. The easy answer to this would be that the activity itself may be political, but proving a point shouldn’t be the priority. Still, theres something inherently political about communities coming together in a non-hierarchical way to help remedy pressing social issues like loneliness. Either way, the concept certainly beats division and selfishness.

An Atypical Perspective…

There’s more than one kind of loneliness: While the standard perception of loneliness is being on your own, there are a number of elements which can make people feel lonely. In the case of autism, over stimulation and feeling cut off from the world by struggling to comprehend everything going on around you can cause loneliness. Lack of support means that some autistic individuals especially, suffer chronic loneliness later in life, making them choose isolation out of necessity, or else places them in environments where thier needs are not best met. The detriment to mental and physical health caused by this illustrates the need for support networks…

Mutual aid presents a template for offering support: Insofar as existing methods of authority-mandated support has gaps, mutual aid i.e communities coming together to support each other, presents an alternative model. This is not to say that future efforts to support the vulnerable, should be entirely charity focussed but that the model itself is promising. Through actions such as delivering essential resources to the vulnerable, organizing community get togethers and creating dedicated support networks for those who are suffering, the approach creates a form of psychological safety. This transcends the necessary but often limited help provided by short time support work.

Community organising is personal and political: From a personal perspective, mutual aid schemes help foster positive communities through supporting some of the most vulnerable people within them. This should be the primary motivator behind them. However, through mutual aid, you are intervening in a scenario where people have been ‘left behind’ and presenting an alternative method of help, which runs contrary to the individualistic mindsets of ‘deal with your own problems’ and ‘one size fits all’ methods of combating isolation. Mutual aid activities present a different way of thinking about our relationships, which in turn imparts questions about how we run our societies, especially during times of crisis.

We’re Not A Virus: on the value of human life

Since starting this blog I’ve made a conscious effort to avoid talking about the coronavirus too much. It is not good for me to immerse myself in the subject, and I want to use this blog to explore a range of pathways.

There’s one phrase which I’ve heard multiple variations on which I felt needed addressing from an autistic perspective: ‘humans are the real virus’

Despite being well intentioned – usually with an environmental message – the phrase to me, brings back thoughts of some of the most crass and harmful misunderstandings of how our planet is being damaged and who’s responsible. These tie into overpopulation myth and nastier ideas about who is deserving of the right to life.

This one was difficult to write in that the emotional way I experience the world around me meant that researching some of these subjects inspired a gambit of emotions including anger, sadness and worry. However, this is a subject I feel passionate about. I hope that the blog throws up some interesting concepts about how to approach the way we talk about pandemics and the environment, taking care to bear in mind who we’re talking about when we place blame.

We are not the Problem

“Corona is the Cure! Humans are the disease!”

Hundred Hands, while impersonating extinction rebellion.

That’s what tweets from a group proposing to be affiliated with Extinction Rebellion read a few months ago. It later came out that behind the tweets were actually from an eco-fascist group called ‘Hundered hands’. One claim they made in XR’s name was that ‘Only white people care about the environment’.

They’re not the only ones spreading falsehood. The fake stories about Venetian dolphins returning to the canals with the caption We.Are.The.Virus have rightly been mocked and exposed as false…

Confession: early on in the coronavirus I shared an ‘infographic’ which cherry-picked stats to argue that the virus only kills very senior people with underlying health conditions. Although not strictly population related, in my ignorance I shared something that partaked in a subtly perverse bigotry in favour of young, healthy people.

This is the issue I have with the ‘We are the problem’ memes. They devalue the struggle lots of people are going through, sometimes just to stay alive. BAME communities are at higher risk. Some disabled people say lockdown has made them prisoners inside thier own homes. Older people and people with underlying health conditions are obviously very high risk.

With regard to autistic people, I’m lucky in a sense – I have quite a large degree of independence and mobility. As someone who used to be an outreach worker you get a sense of the claustrophobic atmosphere of group homes. Autistic people living in those environments are rarely seeing family or therapists at the moment, as those spaces too are vulnerable to Covid outbreaks. This is a particular issue in the US where just that problem has killed thousands.

Dealing with lockdown I have occasionally felt cut off and uncomfortable with adjusting to the changes in routine. This is an issue autistic people are suffering with to different extents – having little access to loved ones or services, support workers have attested to an epidemic of anxiety and depression suffered by individuals in community living settings.

Constantly repeating ‘We are the problem’ not only devalues the experiences of those who are genuinely suffering, but couches its messages in a nihilistic, cynical view of the world that has real life implications related to the value and worth we see human life…

Devaluing life

In 2019 amid Greta Thunburgs speech to the UN, actor John Rees Davies appeared on Question Time, and blamed our climate problem on population. Years earlier he’d stated about the Muslim population: “There’s a demographic catastrophe happening that nobody wants to talk about”.

fake posters reading: corona is the cure! humans are the disease!

Remember when I described ‘Hundred hands’ as eco-fascist? Well, those ideas stem from Finnish thinker Pentti Linkola who once wrote, with comparison to refugees: “When the lifeboat is full, those who hate life will try to load it with more people and sink the lot. Those who love and respect life will take the ship’s axe and sever the extra hands that cling to the sides”

In March, a Telegraph journalist provoked controversy for writing “COVID-19 might prove mildly beneficial in the long run by disproportionately culling elderly dependents” – This applies the same logic, except rather than painting the virus as a saviour of the environment, he’s using his economic beliefs to argue that the virus will be beneficial in allowing us to save money on social security.

Most people sharing the ‘we are the virus’ meme would deny that they are advocating any of that. The point here isn’t what individuals believe but how statements about needing less people prove counterproductive and harmful in the face of actual threats to human life.

“Broad calls for limiting population, or rejoicing in the pollution-stunting effects of the world’s economy grinding to a halt, are indirect endorsements of mass suffering for people who are already most vulnerable. Blind applause for environmental progress without acknowledging who’s bearing the cost is simply a rebranding of white supremacist ideals. And as with most disasters, the effects of the novel coronavirus won’t be distributed equally. Experts say that older, sicker, and poorer people will disproportionately suffer and die from COVID-19 and its economic impacts”

Garcia, The pandemic is bringing out environmentalism’s dark side

This is what the ‘We are the problem’ narrative does. Perpetuates an image of the human life as worthless. Who cares if they die? ‘we are the problem’ after all. Surely, anything done to help will cause the population to burst at the rafters and prolong human suffering in the long run

I was thankfully not able to find any examples of the ‘we are the virus’ logic being used against autistics. However, it would be revealing to know what the Telegraph Journalist thinks about those ‘unproductive’ members of the neurodiverse population, or what Linkola thinks our reproductive rights should be. With any statement about humans being a disease, come questions about which humans are or are not deserving of life.

Population Control and Eugenics

Thomas Malthus was a demographer, known for his 1789 essay On The Principal of Population in which he argued that the population would grow every twenty-five years, outstripping resources and leaving future generations in turmoil. He was writing against a background of colonialism. As professor of history and political economy at the East India Company’s college, he justified the starvation of Indians in famine on the basis that it was caused by thier ‘compulsion to breed’.

Through a Malthusian lens, diseases such as Covid-19 are ‘positive checks’ – useful in regulating the swelling ranks of population. Ideas such as lockdown and social security would have been seen as ridiculous. Looking back the examples I gave earlier we see this logic being applied – the idea that refugees will place a greater burden on resources, that we should sacrifice older sections of the population for the sake of the economy. At the heart of the Malthusian obsession with resources is the idea that some lives are disposable, while others are not.

This ignores the fact that despite everyone being responsible for climate change in some small degree, human beings are far from being equally responsible. A study in 2017 showed that just 100 companies are responsible for 71% of global emissions. While birth rates in poverty stricken areas of the world tend to be higher, environmental death does not correspond to people in the third world having more children – rather, western consumers are contributing to tens of thousands of pollution-related deaths in the countries where the goods are produced. While coronavirus has resulted in environmental ‘benefits’ this has been down to a slowing down in the global economy brought on my lower productivity, not the millions of deaths.

I’ve talked before about how Hans Asperger played a role in selecting so called ‘high functioning’ autistics who could contribute to Nazi society, and sending others to thier deaths. That’s an extreme example of what I’m talking about. Before the categorization of autism they were labelled schizophrenic and would probably be institutionalized. Throughout the 60s’ and 70s’ methods such as Applied Behavioral Analysis (ABA) utilised electric shocks, starvation and corporal punishment with a look towards curing autism.

This is the principle behind Malthusian idea. They point to disadvantaged subsets of society and argue that we just do not have the resources to support them. Individuals within that subset then face a choice – either change your lot in life, which is for many impossible, or die.

“scant aid is being sent to formerly colonised countries to help the economies we asset-stripped combat the spread of the virus. Borders are closing. Millions are being suddenly turfed onto the scrapheap of unemployment and homelessness, exposing them to greater risks of COVID-19.The sham nihilist universality of claiming ‘We are the virus’ means in practice that the usual suspects are skewered on the sharp end of ruthless cronyist politics keen to shore up resources among the already powerful”

Elanor Penny, We are not the virus

You are unlikely to see Malthusian ideas overtly referenced today, in the same way as the British government employed them in defending its lack of intervention during the Irish Potato Famine (yes, really). However, they are still influential. They manifest when a newspaper column argues for the ‘culling’ of elderly residents. When its argued that disabled people should lock themselves up indefinitely so abled people can “get back to normal”. When people in community living settings and claustrophobic communities are placed at increased risk. And yes, when people say ‘we are the virus’

An Atypical Perspective…

‘We are the virus’ devalues life: By categorizing humans and nature as somehow separate, statements like ‘We are the virus’ and the sinister ‘coronavirus is the cure’ assign less importance to the increased risk certain groups are at. I argue that preserving any environmental benefits we witness as a positive side effect to the world being on lockdown, must be considered in tandem with how we save as many lives as possible. Humans are part of the natural world. So, rather than devaluing one or the other, the question should be how we operate in harmony with the rest of the environment, post lockdown.

The logic behind the idea is dangerous: With the statement ‘we’re a virus’ and the devaluing of life that comes from that, the inevitable assumption is that we should be doing less to help those in higher risk categories such as the disabled and elderly, to stay alive. By this logic, we’re marking able bodied and healthy people out as significantly more deserving of life than those who are perhaps more ‘capable’ or ‘useful’. I hardly need to explain further why this idea is dangerous, but needless to say that any movement which claims to respect life should respect and value the lives of everybody.

The idea achieves nothing in the face of actual threats to the environment: While the people sharing ‘we are the virus’ might genuinely believe that they have noble aims, what does the statement actually do in the face of ecological and natural-born catastrophe other than devalue the importance of the humans who suffer the effects of environmental catastrophe? If anything, the mantra promotes inaction in the face of pandemics and natural disasters, and defends those who have the most to lose from shutting down the economy – coincidentally the same ones who are doing most of the polluting. Whichever way you consider the issue, the concern should not be about the amount people on the planet but how we choose to interact with the world around us.

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.

The 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.