Understanding My Senses: repetition and ‘stimming’

As I write, I am fidgeting with a bracelet. A pair of headphones snakes from my phone to my ears which i cant resist the urge to strech and tie into knots even if that turns listening to music into a more expensive hobby than it already is. Occasionally, I’ll read something interesting that I can use for this blog post, to which I might react with excitable movements or else stare into space if I’m confused by what I’ve found out. I’m also known to rock back and forth when listening to music, or feeling anxious. Anyone watching me in these moments might think I’m acting strange.

What they might not understand is how all those behaviours, to me at least are a reaction to something. They are how I process change and the world around me. I’m not sure exactly why these behaviors help me do that. They just come naturally. Stimming helps me feel grounded when I’m overwhelmed but its also a way I can express my joy, fascination or sadness. The world is louder now, which I like, actually. Having somewhere to go, things to observe, hear and experience on a day to day basis makes me feel intellectually and physically stimulated, even if I do sometimes get overwhelmed. I feel that sometimes people put autisitc people in a box and say that because some of us don’t react well to loud noises or crowds we don’t ever want to be in environments where there is a possibility of loud noises or crowds. On the contrary, if you say you’re an extrovert and say you like to be out and about, your occasional quietness and withdrawn nature might be seen as strange or uncharacteristic. This is despite the fact that humans do not fit neatly into boxes, not least autisitc people.

A shift in the way we see repetitive behaviours as a society is entirely necessary. They contain not only ‘stims’ like rocking back and forth but routines, and special interests like a fixation on music and writing, as is the case with me. Traditionally neuro-scientists like Leo Kanner have viewed them as something to eliminate. However, ideas about repetitive behaviours and what purpose they serve has changed, as ideas about autistic people have progressed.

Interpreting Repetition…

Leo Kanner and Hans Asperger, who originated modern thought on autism even if thier ideas are incredibly outdated and wrong, both saw ‘stimming’ as attempts by autisitc people to shut out the world around them. In the wake of these ideas sprung up a whole subset of pseudo-therapy aimed at reconditioning autistic people. Tactics used included electric shocks and physical restraint, aimed at stopping autisitc people from behaving in ways that were perceived as disruptive and strange. This still goes on to an extent – human rights law prevents the use of physical torture but there are still ‘therapies’ which some children are made to undergo, aimed at eradicating certain character traits or stopping them from being sensitive to certain sounds, textures and atmospheres. If this sounds like social conditioning its because these practices literally emerged out of academic theories which believed that autisitc people should be cured, or else made to ‘fit in’.

Despite this, as anyone who’s ever had a child or younger sibling should know, erratic body movements and repetition are an important part of development as children learn to interact with the world around them. Now, as people learn to better respond to and understand thier environments, thier actions become more purpose based and goal oriented. While I’m cautious of using comparisons to children as a way of describing autism, what if actions like stimming and routines are autistic peoples attempt to make sense of a world that so often seems overwhelming on both a sensory and emotional level? If, for the sake of argument, we assume this to be true, then the entire argument that these behaviours are a symptom of a larger problem with autistic people, falls apart. You can’t on the one hand say that autisitc people should adjust better to thier environment, and then castigate them for thier attempts to do just that.

In fact, a 2014 study appeared to point in this direction. It found that both autisitc and neurotypical children,  continue to engage in repetitive behaviors, such as fiddling with objects, as they grow. People with autism just display more of these behaviors, as well as a greater variety. The aphorism that ‘everyone is a little bit autisitc’ is an annoying one, as well as not being true. However, it is fair to say that we can learn a lot from observing behaviours which appear strange and asking what purpose they serve for the individual, rather than making rash judgements. All this informs how we treat those we perceive as ‘different’.

Understanding ‘Stimming’..

As well as playing important functions during development, stimming helps autisitc people in a number of ways. Many of us stim as a way of coping with overwhelming sensations or emotions. It can also serve as a way of communicating those thoughts and feelings. Psychologist Steven Kapp who studies self-stimulatory behaviour has said that while something like scratching yourself can represent anxiousness, hand flapping is usually a sign of happiness. He sees stims as an outlet for “uncontainable emotion”, not as something worth repressing. And that’s the other reason for repetitive behaviors like these – they feel really good.

This is a point highlighted excellently by neurodivergent blogger Julia Bascom on her piece on how uniquely autisitc body movements as well as special interests and routines are all part of the autistic attempt to make meaning out of life, and not something to be pitied.

“Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day”

Julia Bascom

I can personally relate to this -obviously, Bascom is speaking in very general terms. I personally don’t regard the multiples of seven as beautiful (although speaking as someone who has to have thier watch with them at all times, the multiples of five have something going for them) and that’s okay. Personally, I pity anyone who can’t have a song speak to them on such a deep and powerful level that listening in public requires restraint. I pity anyone who can’t pour thier soul so much into a subject that they want to find out everything it be that politics, journalism or philosophy. My emotions are somewhat volatile so a small thing can make me sad, but a small thing can make me happy. Given that I’m ‘always on’, something as tiny as a change in my environment, a smell, a taste, a sound, a word from someone, can alter my mood exponentially. Repetitive behaviours are a key part of the way I regulate that.

Despite this, I have read many comments written by neurotypical parents desperately trying to stop their child from stimming in an attempt tp make them ‘normal’. I quite regularly receive strange looks from people on train platforms for my inability to stop pacing up and down as I’m waiting. While I get that autisitc traits are not widely understood within society, I have tried to adjust my own mindset to be less presumptuous when I see anyone doing anything that could be perceived as ‘strange’. This highlights how empathy is key to understanding repetitious and obsessive behaviours. I might not relate to some autistic people love of maths and not all forms of ‘stimming’ come naturally to me, but that dosent mean I don’t understand these as autisitc peoples ability to make sense of the world and shape it to thier needs.

“It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echoed phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy”

Julia Bascom

An Atypical perspective….

To me this is about how the world sees happiness, and what happiness is in reality. I think we create images of what happiness looks like that we then try and impose on other people with the assumption that everything that makes us happy, must make other people happy. This is despite the fact that all sorts of happiness exist – the type autisitc people are experiencing when they stim, or listen to thier favourite song even if they know all the notes or read about a subject thier passionate about deep into the night is a sort of reserved, private kind that makes everything else seem insignificant in that moment. Rather than resenting these behaviours or treating them as abnormal or not appropriate to ones age, we as a society should see them as an aspect of individuality that the majority might never quite ‘relate to’, but can emphasise with and understand. By taking a more open minded approach to peoples behaviours, we will improve our understanding and respect for people different from us, as a whole.

Respect as Safety: The importance of ending male violence

I’m sure you’ve all heard by now about the appalling ‘alleged’ murder of Sarah Everard. For those of you reading internationally and perhaps less aware, last week she was attacked by a police officer. A search ensued after her boyfriend alerted the authorities that she was missing. She is now presumed dead after human remains were found in a local woods. The police officer in question is currently standing trial, which is why I’m using the kind of neutral language that I am here. The case remains an extreme but no less serious incident of the kind of thing many women understandably fear about being in public.

Re-enforcing this climate of fear was the police response to the vigil a few days later – an incident that has been the subject of much protest and outcry. In response to people gathering peacefully at clapham common to pay thier respects, all wearing masks and many socially distanced, the police broke up the vigil, pinned mourners to the ground and chucked them into the back of police vans. Many have rightfully pointed out that this is indicative of the climate of fear that exists towards women being out on the streets and excersing thier right to speak out against male violence.

The first part of this blog will give an overview of how I see my responsibility as a male in ending all forms of male violence no matter how subtle. As with everything else, my autism has coloured my way of looking at the issue. The second part of this blog contains a few observations from a friend of mine who is both autistic and female. In situations which are so serious, my words may have limited effect, however if I have the ability to add my voice (and Sofie’s) to the chorus of those calling for a change in how we understand and behave towards issues of safety and respect, then I feel I have a responsibility to do so.

Violence and the problem with ‘not all men’…

Before we go any further, I want to clarify what violence is. Using its broadest definition, violence is anything that directly or indirectly causes physical or emotional harm to other people. In that sense, violence could be anything from directly assulting someone, to using your words and actions in a way which makes people feel unsafe, to refusing to speak out against other, more serious forms of violence. Its not a perfect definition but its one that works when discussing men’s responsibility to stop male violence.

My first reactions to the case of Sarah Everard were emotional and upset. The police response at the vigil a few days later made me angry. I’m lucky in that neither of these incidents made me directly fear for my safety. One of the issues which means that violence against women and sexual harassment are such pervasive issues, is the deeply contradictory messaging surrounding them. A lot of the discourse focuses on what women should be doing, wrongly – in my opinion – shifting the responsibility away from the abuser on to women. As a man, it is my responsibility to make women – and everybody – feel safe, by not engaging in any wrongful behaviours. If I didn’t and followed the ‘Its women’s responsibility’ line, I would’nt have any basis on which to criticise others who verbally mock me for my outwardly autistic traits. Indeed, if it is women’s responsibility to protect themselves, why would’nt that include the right to speak out against abuse when it happens? The message around public safety and bodily autonomy directed towards women seems to be ‘take the necessary precautions so you can defend yourself if your attacked but don’t try and challenge any of the attitudes that lead to assult in the first place’. None of this is to say that people don’t have any responsibility for thier own safety. Everybody takes precautions to feel safe but no should have to feel victimized.

At some point, if you point this out regularly and to enough men, you are likely to hear someone say ‘not all men are like that’. The primal way you want to respond when you hear or see #NotAllMen is “yes, I fucking know. Nobody is suggesting that all men are abusive, simply that it is far too common, and that all men have thier part to play in stopping abuse from happening” . As far as I can see, the phrase ‘not all men’ comes from a primal desire to defend the group that you’re a part of. Its a composition error where men hear others criticisng male violence, and immediately feel under attack. Its the logical equivalent of hearing a story about someone with blue eyes doing something criminal, and immediately becoming offended because you’ve got blue eyes. Of course, in some cases people of a certain identity are made to look bad as a whole – this quite often happens when an autistic person does something bad and media outlets implicate thier autism. However, this is clearly not what is happening here. While many might – rightfully in my view – say that all men are capable of subtle forms of violence, nobody is conflating ‘individual men’ with ‘all men’. To pretend that they are is just absurd.

And yes, in case anyone is in any doubt, the problem is that severe. Evidence indicates that even using the narrower definitions,  violence by men in public spaces is disturbingly prevalent. Although the more extreme physical manifestations of violence such as abduction or murder are relatively rare, a large proportion of women report being assulted. And when women are subjected to serious physical violence or murder, it is usually men who perpetrate it. This is often despite extensive safety work from women. Contradictory messaging about being told to protect oneself while simultaneously being told that protesting is unreasonable and overreactive does nothing to keep women or anyone else safe. Fiona Vera Grey has pointed out how women are expected “the right amount of panic” to be viewed as having a reasonable response to the threat of violence. Even then, what they do may not be viewed as enough. All the while the problem of male violence goes overshadowed and overlooked.

A few thoughts from Sofie Bainbridge…

While I as a man have a responsibility to educate myself about sexism and forms of aggression against women to make sure I do not act in subtly discriminatory ways myself, I am actually incapable of claiming to know everything about the experience of being a female. For that reason, my friend Sofie, who is also on the autism spectrum, has provided a few thoughts which I’ve added some of my own notes to.

…”with me being a woman a woman and autistic, I feel more scared when hearing about these things happening“…

This connotes a degree of anxiety arising from news stories of assult and violence. My friend does take care to point out that violence can happen to anyone for a range of reasons. However, that does not mean anyone can specifically relate to this form of sexualised violence which is so common. That’s why I think its important not to shrug off the concerns of women with ‘everyone risks experiencing violence’ – this is true, but not everyone is necessarily at equal risk. Therefore, as this observation summarises, ignoring the different forms violence takes risks ignoring the causes of the problem and oversimplifying acts of aggression as ‘crimes’ with no social significance or relevance. As Sofie goes on:

“I do believe that there is a threat, especially when I’m frequenting out of society places like bridal paths“…

This points out that while in parts of society or in certain situations, there may be accepted way’s of behaving, in isolated, less formal scenario’s the message to women is clear – ‘the right to feel comfortable in this public space is mine and not yours’. The potential for violence from male members of the public may be particularly pronounced if they see a women ‘stimming’ or acting in ways that are perceived as strange. Of course, everyone should have the right to feel comfortable in all public and private spaces but this is rarely the case.

…”It is really difficult explaining to people that I’m autistic, and they don’t respect boundaries 90% of the time. They think I’m rude or ignorant and can be hostile as a result”…

This is a particularly insipid form of violence that happens to women and autistic people, albeit in different ways. Just looking at autism for a second, when people stand to close to us or touch us in ways we feel uncomfortable with, many of us pull back. Equally, we can be very quiet and reserved when meeting someone for the first time. Both these can be perceived as rude and aggressive. Being a woman introduces a form of sexualised violence into this whereby women who reject men’s advances are met with aggression. The fact that many face the risk of one – or in cases like these, both – of these forms of discrimination proves we need better understanding of boundaries and consent throughout society. As Sofie goes on to say:

“neurotypical men could take the time to understand more. It appears unless it is told in black and white they don’t understand. I also feel they could be less domineering”

I think this is something a lot of men could work to understand. Its important to note the issue of microaggressions – subtle behaviours that make women feel less comfortable. This could be something as simple as using sexist language or intentionally and knowingly walking behind a woman for a long period of time. Importantly, if your autisitc you will still notice subtle forms of discrimination. You might not be able to articulate and make sense of what is happening to you in that moment but just because someone struggles to make sense of thier own feelings, does not give anyone the right to abuse that process.

“sexism effects me, especially when I used to work in a male dominanted industry. I also feel that being a woman on the spectrum, I’m constantly compared to men on the spectrum, as though we are all the same”

This is another example of the vicious ways sexism and ableism often intersect. Autism was presumed only to effect boys, until quite recently. This has led to many woman going undiagnosed. Think about it, count how many representations of autism are about men, and count how many are about women. It says something when the most prominent representation of autisitc females in the media is Sia’s Music. Whatsmore, the common portrayals of women and autistic people in the media is as weak and timid. The generic preconceptions of ‘all autistic people. behave this way…’ or ‘all women are like this’ or even ‘autistic women should be like this..’ contribute towards the dehumanizing and stigmatization of these identities. What right then has anyone, when faced with the idea that all men do indeed have a responsibility to educate and be honest with themselves about sexism, to claim ‘not all men’?

An Atypical Perspective…

Sofie’s special interest as an autistic person is photography and she see’s her home as her safe space – a place she can find some peace and quiet, from the hectic qualities of everyday life. She says that while her hobby gives her a sense of safety, she dosent feel comfortable taking photographs everywhere. This struck me as a great illustrative point. If you’re a creative person you don’t want your creativity to be restricted in any way. You want, to put it simply, to be free. This is not just a creative impulse but a uniquely human one. Whether its to walk, to see your friends, or to take photographs, everyone has the right to dignity and respect in all areas of life. The case of Sarah Everad and the police response at Clapham common has illustrated how we are a woefully long way from achieving that goal of safety and respect for everyone. Fortunately, creativity and freedom to be oneself, is also the solution. Women and thier allies are lifting thier voices to demand a change in a range of creative, clever and inspirational ways. My hope is that these inspire people, paticulary men, to reflect on and change thier violent and discriminating behaviours in the struggle to achieve a safer world.

Dismantling Your Brand: On the phenomenon of ‘selling yourself’

Audiences have a parasocial relationships with content creators. This means that they feel like they know the person whose work they enjoy. Now, some of my readers do in fact know me but still, there’s ‘atypical perspectives’ – the blogger who makes commentary and autism theory, and then there’s the person who writes. I try and be an open book on here, but factors like the confidence with which I write, the attitude and humour I inject into my blog posts, and even my style of writing, paint an image of myself that may or may not be consistent with who I am in real life.

I bring this up because on the back of this realization that the way people see you online can be different from who you actually are, has arisen a new cultural phenomenon: ‘selling your personal brand’. This dosent refer specifically to owning the rights to a brand name and selling that to people (hey, the word ‘atypical’ is obviously meant to hook people in). No, the term refers to you personally being a brand, or at least treating yourself like one. At university I was told exactly this: use your social media presence and networking skills to project an image of yourself!

I talked to a few different people from a few different perspectives in forming this blog post and determined that how you use the term ‘brand’ is of immense importance in forming your opinion on this. Looking at my social media and this blog, you could gauge that my experience with autism is my ‘brand’ and the way I project my autism to people in order to help people make sense of thier own feelings towards themselves, determines how I’m seen within a wider ecosystem of information about autism. For some people thier brand might be dealing with grief, or sexuality, or mental health. If you put information out into the world about anything, your work will resonate with some people more than others, you’ll be entering into a parasocial relationship of trust with your readers, and rightly or wrongly, risk being judged against the standards of those making similar content.

As much as having a ‘brand’ can be good, its the idea of thinking of yourself in that way which irks me. Heinz are a brand! Sony are a brand! The idea that people can package themselves like a can of baked beans is worth calling into question. One aspect of brands is that they are easy to understand, while humans are not. In my last blog I talked about ‘masking’ – the process by which people hide behind a façade of normalcy, and as an autisitc person I find that kind of ‘brand management’ really draining. I’m very lucky that I work and socialize in environments that appreciate my social awkwardness. True, some social settings may want you to retain an air of expertise and casual arrogance but that’s never been my approach. Mine has always been to say ‘I’m not an expert, so what can I learn?’.

I don’t like the term ‘brand’ as applied to people. The term dosent acknowledge that we each have a voice which can be contradictory, complex, often wrong. Encouraging someone to brand themselves removes the nuances and weaknesses which make us human. But hey, anti-branding is also marketable!

Self-Promotion

Part of the reason this subject is contentious is the changing meaning of the word ‘brand’. The word is derived from the word firebrand – a burning piece of wood, which in itself comes from the old German word brinnan. Torches and later branding irons have been historically used to mark items like pottery, and to permanently burn identifying marks into the skin of slaves. Those marks then came to be closely associated with certain craftsmen. Since then the word has become associated with aspects like the personality, and what attributes companies or individuals want people to think about when they see thier brand. Still, its interesting to think on the original meaning of the term.

The same applies to the word ‘atypical’. If someone’s been reading my blog and then they hear something strange or out of the ordinary being described as ‘atypical’ does that mean that I’ve trademarked the word in thier mind? (that might be wishful thinking, considering people who read my blog sometimes think of the sitcom of a similar name).

Still, competitions over how others see you have spawned an entire industry. In 1997, ‘fast company’ published an article titled ‘The Brand Called YOU’ where they argued that everybody should treat themselves like celebrities or politicians. This of course relies on the very individualistic idea that everybody should strive to achieve success and that this can only be done as an individual. Indeed, its arguable that the idea of personal branding rears its often ugly head in societies where jobs within established sectors are limited, and where theres a ‘gig economy’ whereby individuals compete for work using thier digital profiles.

In uni we were frequently given the task of describing ourselves using three words which our lecturers would then asses for accuracy and effectiveness. Terms that got passed back and forth in these sessions were ‘headstrong’, ‘determined’ and ‘confident’. We were encouraged to ruthlessly promote our media skills and social networks. In fact, while I realised that these are much needed abilities for any media professional, I never understood why understanding our vulnerabilities and a trial and error approach to failing wasn’t given equal attention.

The problem with restlessly promoting a personal, tailor made image of yourself is that you get put under immense pressure to live up to that image. I was quite conscious through higher education that I was not good enough at socializing. I would spend my free time worrying that I wasn’t at the right networking events, or using twitter enough. I can’t speak for my fellow students but as an autistic person, this stuff really worried me.

“When people are trying to create a personal brand they must be always on. This introduces a new way of constantly policing yourself. It forces you to be far more instrumental about your personal life, seeing yourself as perpetually performing for a business-driven gaze”

 Ilana Gershon, author of Down and Out in the New Economy

This might mean updating feeds several times a day with carefully curated content, palatable to the people you want to socialize or work with. Competition is also biased by the fact that some people can get professional help from ‘image tailoring’ companies, or buy artificial Facebook likes, Instagram followers and other metrics of ‘success’.

Selling ‘You’

I want to take a step back for a second and look at this idea of selling your positive attributes, which we’ve all done either through job applications or socializing apps etc. In this case, someone could argue that its not about fakery or projecting an image, its about asking ‘what brand am I already?’. This can be useful advice in some circumstances. For instance if people are going to make assumptions about you based on what you say and do, why not work on being warm and friendly, and projecting your best qualities. Hell, I’m quite keen on avoiding using language which is offensive and outdated, and dosent that have a strong ‘branding effect’ where people see you in a certain way because of the language you use?

All that is all well and good, and there is a case to be made for a sort of self-affirming personal branding whereby your kind to yourself by acknowledging your positive side and acting on that. But what about cases where the version of ‘you’ that people see out in the open is different from who you really are, for reasons outside of your control? If you have ever experienced any form of ‘imposter syndrome’ – the process by which someone feels like they are putting on a façade to a judgmental world – then you’ll know what I mean.

I want to make absolutely clear before we go any further that for some – whether as a tool for dealing with mental health struggles, or otherwise – running a blog or a channel and treating your that as your ‘brand’, can be a great outlet for expression. I know that talking about my autism through this blog has been a blessing, allowing me to articulate my thoughts in ways I couldn’t over casual conversation. Indeed, while I personally prefer to avoid using the consumerist language of ‘brands’ and ‘labels’ to describe what I do, others might have a different set of sensibilities.

That said, many spend thier lives having to project images of themselves, which act like masks on who they really are. I’ve already done a blog about autistic camouflage but I can assure you that trying to tailor a brand for yourself is a different experience if your already pretending to be ‘normal’ most of the time. What about if your on the LGBTQ+ spectrum and afraid to come out for fear of ridicule from your peers? is that not playing a role in order to be accepted? If your someone who comes from another country you might find yourself constricted by cultural barriers that you struggle to professionally navigate. This is why I tend to skew towards seeing ‘personal brands’ as manufactured personas. While some may be able to be themselves and treat that as thier brand, how easily could you do that if you constantly felt the need to hide your authentic self ? The biggest problem with the idea of ‘selling yourself’ is that it assumes that everybody starts from the same place of privelege and ease, even while some have thier humanity called into question. If we’re talking about retaining an image, what about those who go about thier routines, establish relationships and careers despite the constant possibility of being discriminated against or harassed on the basis of sex, skin colour or disability?

All this presents some very serious concerns about how we approach personal brands, as a concept. For clarity, I’m not saying that we should trash the idea completely, especially if its one that helps some. That said, I do think we need to consider what we’re asking when we tell people to brand themselves, and listen to those who experience thier personhood differently. One reason I don’t like the terminology is that describing people as brands seems to treat them as resources or capital. The question we should be asking when we encourage people to reshape or market themselves is ‘are we encouraging expression or exploitation?’

An Atypical Perspective…

Our media and means of expression should value peoples identities: With complete honesty, this is something popular media has always been historically bad at. In a sense, performance culture – that is to say one which encourages people to live up to artificial standards of ‘what you need to do to succeed’ – can be traced back to the way advertisers portray bodies, relationships careers etc. However, not only does this set ridiculous standards, but it devalues the experiences of people in marginalized groups who spend thier lives attempting to meet an expectation, or ‘masking’ part of thier identity. I’m not certain that ‘selling your brand’ encourages individuality, and think more thought can be given to how we stop the trend from being exploitative.

Self esteem and mental health are vital: While having an outlet to express oneself can be good for ones mental health, by asking people to develop a ‘personal brand’ we risk burdening them with a lack of self esteem where they worry constantly about how they are perceived by some abstract image of ‘professionals’ or ‘popular groups’. I feel this risks creating a culture where we believe that its for people in positions of authority to judge you rather than the other way around. Whatsmore, no institution or way of ‘selling yourself’ should work to the detriment of your mental health.

Self expression is generally positive: Insofar as a ‘personal brand’ provides opportunities for self expression and openness it can be seen as a useful tool. Issue being, do we choose to view these means of expression as a consumer product? We’ve seen through some films and music how introducing market logic into creativity can result in generic output or at least put the pursuit of creativity and honesty second to reaching an artificial standard of clicks and sales. One of the most important questions to ask with treating creative work or people as brands is ‘does this unleash or stifle freedom of expression?’. I fear that if I tried to answer that question on my own, I’d be employing my own ideology too much, so I’ll leave the answer to the perspectives of my readers.

A Crossroads of Equality: Ableism and Intersectionality

“Ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled”

A definition of “ableism”

The exact definition of ableism depends on who you ask. Different people experience the discrimination in different ways. I like the one above, which clarifies how ableism can happen when people are perceived as disabled, or reduced to one charecteric in order to undermine them.

I’d like to think of myself as an ally to minority groups, even if I can’t speak with any authority on the experiences of any of them, except autism. For a more in depth analysis of disability issues specifically, I recommend you follow Mel Baggs’ blog. Her post “There is ableism somewhere at the heart of your oppression…” frames the argument along the lines of ‘if you’ve experienced discrimination, you’ve experienced abelism’ which is different to mine, though hers is still worth a read.

The idea behind intersectionalism is that all forms of discrimination go hand in hand with one another, in the sense that racism and abelism intersect, as there are obviously disabled people from BAME backgrounds. Homophobia and transphobia intersect in that there are trans people who are also gay and so on. The idea of intersectionalism proposes that you can’t be against one form of discrimination without also being against the others.

Until recently, autism has been widely thought of as largely a male disorder, with boys diagnosed with autism outnumbering girls, 4 to 1. Psychologists such as Baron-Cohen attribute the condition to an “extreme male brain”, where according to him the minds of men are geared towards ordering things – a male trait – but not empathisng – a female trait. However, scientists such as Shana Nicholas have pointed out how females often “slip under the radar” and research from 2012 theorized that autistic females are more likely to skew towards needing learning support, than showing behavioral problems, meaning thier missed by a lot of the methods used to diagnose ASD. That’s without mentioning the very interesting research appearing to show that autistic people are more likely than neurotypical people to be gender diverse.

Within BAME communities, a lot of families experience double discrimination, due to thier ethnicity or disability. Many families from those groups struggle to engage with autism resources due to a lack of representation from facilitators, the language barrier and not being able to get others to empathize with issues related to thier culture or religion. Also, testimony by autistic people from those communities say that things like public meltdowns often aren’t treated as symptoms of autism for them. To use one quote from a parent ‘people will see this behaviour first, and then see the colour of my child’s skin’

In that sense, there is an archetype associated with autistic people. That of, ‘straight, white and male’ – and I fit that picture. How can advocates of the neurodiversity movement like myself, claim to be against oppression of all autistics, when we have yet to shake off that stereotype? Research on autism within gender and race etc. present an opportunity for a turning point in our understanding of the condition. Vitally, in order to be truly representative, autistic activists must realise the importance of intersectionalism. This is why I say we are at a crossroads of equality.

Intersectionality

Reading the research around gender, sexuality and race makes deciphering how ableism interacts with different discriminations, easier to understand.

Consider for a second that a lot of homophobia focuses on trying to delegitimize peoples sexual identity either by making them seem less woman-like or making them out as effeminate. These are obviously incredibly offensive caricatures to both women and LGBT+ people. Therefore, sexism, homophobia and indeed transphobia are here interacting in a way which paints stereotypes of people from across the sexual or gender spectrum. To be against one of these forms of discrimination and not the others, would be absurd.

Upon further analysis of quotes like the one from the mother who worried her son was being judged based on race for his autisitc meltdowns, we see this sort of interaction happening within ableism. In what she described, passers by saw the skin colour before they even guessed at autism, and presumably used that to make a judgement about the child or her parenting. In fact with lots of forms of discrimination, the concept of intelligence, learning and the mind plays a vital role. People on the LGBTQ+ spectrum have been accused of having a mental illness. IQ scores are often used as a way of saying people from certain racial backgrounds and are inferior to white people. Even when autism research focuses on one gender, the fact that all characteristics for defining autism are being looked at through a lens of how males experience ASD, shows an intersection of ableism and sexism.

Embeded within each of the fist two examples is the idea that people from those groups must be mentally disabled. In the case of the later we see how one group experiences autism being applied as the prototype, which overlooks not just females but all people with unique experiences of being on the spectrum. In this sense, ableism too can intersect with multiple forms of discrimination. I use the word intersect here to stress that this isn’t a case of one form of discrimination being more important than another, just that they’re not as disconnected as they are sometimes thought of as being. Importantly, realising that they intersect, strengthens the case for why we should care about all marginalized groups.

A Question of Ability?

In order to explore abelism with regard to intersectionalism we need to look further at this idea of intelligence and the mind. Any attempt to devalue autisitc people or to devalue somebody by making them out as disabled, focuses on thier weaknesses. For me that’s interacting in social situations and being under pressure. This disregards things like emotional intelligence, or cognitive ability to understand a special skill, which a lot of autistic people excel at. All discrimination really, involves a stripping of nuance and specifics.

I pointed out earlier how the idea of intelligence has been routinely used to undermine people of different racial backgrounds. In the case of the former, the abelist and racist myth of “race science” says that there is link between race and intelligence and that there are “evolutionary bases for disparities in social outcomes such as wealth and educational attainment”

So I bet some of you are a bit confused right now. If neither autistic people or people from BAME backgrounds are less intelligent, than how are those two forms of discrimination connected? Well, heres the point. Intelligence is a slippery concept. Its one thing to try and prove that there are no significant disparities in intelligence between marginalized groups and everyone else, and another to argue against the ways some methods of measuring intelligence can be used to promote discriminatory messaging.

Take IQ scores. Most people who take them will achieve a fairly flat line across each of the categories. For the majority, if they are unable to cook a meal, they will also be unable to analyze complex literature. However, for autisitc people this might be different. I remember when I was young I took a longer time than most to learn how to tell the time and to cook, but I also remember still being very emotionally aware, and knowing lots about my favourite authors and musicians. One could look at my difficulty in immediately comprehending an instruction or question now and conclude that I am less intelligent, without taking into account other forms of intelligence. Its a similar situation with people from different cultures. IQ tests have been criticised before for placing undue weight on language skills, when people from different backgrounds obviously communicate differently.

This goes back to this question of nuance. With discrimination all question of different experiences is removed and the discriminator is focusing on a set of standards which they have decided determines someone’s intelligence. Transphobia relies on a set of assumptions about what male or female is, homophobia on ideas about what is right for men or women to do. Considering straight, white and abled people are the majority, the assumptions are frequently based on what’s ‘expected’.

Ableism can intersect with other discriminations any time one group of people is derided as mentally and psychologically inferior another, and you see a view of thier identity as something to be cured. Age old ideas of medicalization – the concept that you can just ‘cure’ something thats intrinsic to the genetic makeup of a person – has been used to hurt people of numerous identities, including autistics. Even if we’re looking at this on a less extreme note, every time people are judged on a basis of what they can or cant do, or anytime someone is barred from access to a certain part of society that most have access to, you’re seeing why identity activists of all stipes should be supportive of each other.

An Atypical Perspective…

Discriminations intersect in different ways: Just looking at the baseline fact that there are autistic people who are black or autistic people who are gender diverse shows a good enough argument for intersectional equality. This is stressed further still through the prevalence of medicalization in identity discrimination, the like for like comparison of peoples abilities irrespective of thier backgrounds, and even the bias that sometimes occurs within research. By grasping how these discriminations intersect we can seek to further understand the experiences of a wide range of autistic people, and make the community a welcoming place for those outside of the steotypical definition of ‘disabled’.

Don’t judge a fish by its ability to climb a tree: This is a mislabeled quote often attributed to Albert Einstein which goes ‘everybody’s a genius but if you judge a fish by its ability to climb a tree, it will spend its whole life believing it is stupid’. He meant that someone might excel on one measurement and prove inept on another. Unlike the standard portrayal of autisitc people, I’m awful at maths, while I excel in creative ventures. Still, if you judged my intellegence based on the former, you could conclude that I’m not very bright. We see this across the board. People from different cultures or countries are judged on thier ability to understand western reading or writing comprehension. People of different genders are expected to experience things like disabilities in the same way. To hold up a set of standards and pretend that they are universal is not only ableist but a disservice to people of all identities.

Intersectionalism should be a lynchpin of movements towards equality: Considering that everybody is diverse in some respect, without any intersectionalism at the heart of your movement you’re really only speaking for yourself. However, as previously pointed out, efforts to seek equality should consider the experiences of all those people within them – an autistic community should value the experiences of its BAME members, just as much as those of its LGBTQ+ members. There are issues that you can say pertain specifically to each of those groups and they themselves should always be given the microphone first in any disscussion about thier oppression. Still, our struggles are often interconnected and interweaved in ways which can’t, or indeed shouldn’t, be overlooked.

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!

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.

Defending the Spectrum: A guide to labels and portrayals

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

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

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

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

Defining Myself

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

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

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

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

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

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

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

Defining Autism

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

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

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

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

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

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

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

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

Lorna Wing, The Autistic Spectrum

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

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

‘Nature Never draws a line without smudging it’

An Atypical perspective

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

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

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

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

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

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

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

Okay…that’s the answer I dream of giving

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

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

Bottom-Up Thinking

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

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

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

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

Samantha Craft, The innovative thinking style of the Aspergers mind

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

Tradition and ‘Standard Practice’

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

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

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

Danielle N. Martin, East Carolina University

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

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

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

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

An Atypical Perspective

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

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

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

Don’t Shout, Listen: Why my opinion on race issues is not needed

As I write this, the death of George Floyd has just been certified as homicide. The report states that his death was caused by Cardiac Arrest triggered by a police officer compressing his neck for more than eight minutes, while he was being restrained. The murder has sparked protests internationally.

I’m not about to get into the politics – to clarify, those discussions are important to have, but because my commentary isn’t needed. If reality is determined by historical context, then what happened to Floyd, and Trump holding up a bible as the country went up in flames is a fragment in a history of stories of struggles against racism, that are not mine to tell.

I call myself an ally of Black Lives Matter, and I think that the phrase ‘all lives matter’ is often a racist attempt to detract from the suffering that people in their position dont understand.

In understanding communication- which is something I have personally struggled with – I learnt about listening, understanding when my place in a conversation wasn’t needed. I also struggle with multiple voices speaking at once, often wanting to cut through the noise and hear off the people with the expertise.

In discussions of this issue, this is a point where I should stop shouting, and listen. There are multiple citations from writers of colour in this article. I have provided links to each one of them. Their stories are better told in their own voices. I hope you find them valuable.

Everyone’s Problem

Racism is ‘everyone’s problem’. Don’t misread my view as ‘White people do not have a role in issues of racism’. We do have a role to play, and examining yourself for the preconceptions you have of different races, words you use and racist sentiments which you over-hear and ignore, can be useful.

However, Ijeoma Oluo argues that a lot of the discussion from white people on racism focuses on how they can feel validated while ignoring the structures and systems they benefit from. She recalls that she was once told ‘this is very interesting, but its not going to help me make more black friends’

“Just once I want to speak to a room of white people who know they are there because they are the problem. Who know they are there to begin the work of seeing where they have been complicit and harmful so that they can start doing better. Because white supremacy is their construct, a construct they have benefited from, and deconstructing white supremacy is their duty”

Oluo, confronting racism is not about the needs and feelings of white people
Spot the difference

I have the privilege of witnessing media blatantly which favours my race, e.g in portraying the protests by people of colour as inherently violent. I probably have a generally more positive relationship with the police than many people of colour. Also, as well as being generally poorer, BAME minorities often suffer with worse health outcomes, including being at a higher risk of diseases like Covid-19, and having more trouble getting stamented for disabilities like autism, in some parts of the world.

My response when I’m told any of this should not be to shut up shop and say ‘yeah, well, I had negative experiences with autism’, but to realise the way I slot into the bigger picture as a white person, not to go through each day being proud that I’m not a racist.

In his essay on ‘White Fragility’ Robin DiAngelo argues that the process of realising racism as your responsibility need not be a self righteous process

“although all individuals play a role in keeping the system active, the responsibility for change is not equally shared. White racism is ultimately a white problem and the burden for interrupting it belongs to white people. Conversations about Whiteness might best happen within the context of a larger conversation about racism. It is useful to start at the micro level of analysis, and move to the macro, from the individual out to the interpersonal, societal and institutional”

DiAngrlo, White Fragility

Perhaps if we have a racist perception we can notice it and rather than suppressing that thought, ask why it exists and where it came from. It may be the case that aspects like media representation have altered your perception of how you see people of different ethnicities, and made you take a stereotypical, or discriminatory point of view.

My Opinion Doesn’t Matter

“Amid every conversation about nice white people feeling silenced by conversations about race, there is a sort of ironic and glaring lack of understanding or empathy for those of us who have been visibly marked out as different for our entire lives, and live the consequences. It’s truly a lifetime of self-censorship that people of colour have to live. The options are: speak your truth and face the reprisals, or bite your tongue and get ahead in life. It must be a strange life, always having permission to speak and feeling indignant when you’re finally asked to listen. It stems from white people’s never-questioned entitlement, I suppose”

Eddo-Lodge, Why I’m no longer talking to white people about race

Hopefully I’ve established that even though we all have a responsibility to stamp out racism; white people and people of colour are still often not aligned in that disscussion. People experience the world differently.

My responsibilty is not to go ‘well I think racism is this…’ but to question my own biases, ask why they are there, and not shout over people of colour when they get an opportunity to speak about these issues. That way I can be an ally in a disscussion I’m actually incapable of being an expert on.

This is not to speak for the experiences of all people of a certain race – I’m obviously not doing that. I’m sure a few people will be tempted to explain how they ‘don’t see colour’, however:

“Racism – both the personal kind and the systemic kind– isn’t necessarily triggered by the visual cue of another person’s skin color. Racism is about the social value we assign to people and their actions based on their physical attributes, and neither blind nor colorblind people avoid that acculturation just because they lack the visual cues”

Zach Stafford, When you say you ‘don’t see race’, you’re ignoring racism, not helping to solve it

So no, my opinion on the killing of George Floyd doesn’t matter. I hope I’ve made my readers think about some of these issues, but I wont be the one to lead the disscussion on them.

An Atypical Perspective…

Perspectives aren’t always equal: A fact which can be difficult to comprehend, especially if you struggle with cues, is that people may be coming at a situation from wildly different perspectives relating to their experiences. Realising our place in the discussion and knowing when to shut up, is vital to creating a safe and understanding disscussion on race.

Analyse your behaviours: I’m skilled at analysis. Finding small details and digging deeper to question their meaning. In a sense, we should all be applying that level of micro analysis to our biases and questioning racism even if there’s a nudge and a wink, or an ‘I’m not racist, but…’. It might be the case that you can trace those views back to the media you consume or the privileges afforded to you, yet recognising that can be important in realising wider forms of systemic oppression.

Dont Shout, listen: When it comes to conversations about topics, we’re already in a very crowded room. To shout over the noise with your view is tempting but unhelpful. Rather, we should refer to those with experience on the matter. Many people of colour are cut out of these discussions. Listening to them is therefore vital in stopping racism.