Kaufman’s ‘I’m Thinking of Ending Things’ explores surreal narratives – An Atypical Review

‘people like to think of themselves as points moving through time, but I think It’s the opposite. We’re stationary and time passes through us, blowing like cold wind’

Uncertainly named Girlfriend, I’m thinking of Ending Things

Any writer talking about Charlie Kaufman hasn’t got an easy task on their hands. Films like Eternal Sunshine of the Spotless Mind or Being John Malkovich are detailed to such an extent that interpreting them is likely to result in a degree of the writer drawing on thier interpretation.

Kaufman has built his career on confounding viewer expectations around story, logic, coherence, often in attempt to criticise the clichés surrounding storytelling. A central theme of this movie is the often-stereotyped theme of romantic relationships. One of the key plot points that’s presented is the disconnect between staying in a relationship while burdened by the idea that this is the closest you will ever get to happiness, or risk confronting the uncertainty and anxiety that comes with ‘ending things’. Many people’s lives can lack a sense of certainty. My struggle to internalize and expect sudden noises, patterns of speaking or ways of behaving, means the world can be an uncertain place. What wonder then that when we find a sense of certainty like a stable routine or a relationship, we want to cling to that.

The actual story is distinctly awkward – the girlfriend whose name is not quite clear, is the central character. She is going with her boyfriend, Jake, to visit his parents. Importantly, before she so much as gets into the car she’s thinking of ending their relationship, which is in itself portrayed as strange, in the way they communicate. Equally disquieting are her interactions with his parents. The dispersed nature of the communication, accentuated by the erratic camera work and the cuts to out of context parts of the room like a pair of eye’s that don’t know where to focus. In one scene the girlfriend and father are discussing paintings – he hates art that dosent represent anything, and dosent understand how landscapes can be sad – ‘how can a painting be sad if there’s no one looking sad in them’.

The relationship between the couple is intriguing – Jake has a superiority complex when it comes to the art that he creates as well as the intellectual pursuits that his parents dote upon him. And yet they are not that different – they both like to paint and often her career is described as similar even if, like her name, its never made clear. Still, that sense that something is very wrong saturates. I’m not the first person to point out that the boyfriend could be autistic. The girlfriend has an element of being able to socialize that he clearly does not have, again reminiscing the strange feeling of being in a room where everyone’s chatting freely, and you have a glass wall separating from the atmosphere. Does she really want to be with someone who has such a different way of being, just to help him sustain this idealized image of a relationship that he has in his head? We soon realise that the film is not really about either of these two characters.

For as much as her name is obscured, the film puts the girlfriend front and centre both through the narration and the artwork. She captures the anxiety of trying to find a place where she can make a relationship work out of a sense of ‘what else am I going to do with my life?’, even if she knows that the relationship is doomed. Underpinning the film is that sense of danger and as a blizzard ensues throughout, there’s a running motif of the road being treacherous – a metaphor for the journey into uncertainty. Indeed, every time the girlfriend insists that they need to leave, the boyfriend loudly rebukes her with ‘I have chains’ – a strong metaphor for the surrender of freedom she might undergo, if she stays with him. While he’s clinging on to a sort of idealized romanticism that he’s seen in musicals, she’s clinging on to routine and the hope that the road ahead won’t be so treacherous.

I want to return to the title. There’s a deliberate vagueness to the wordplay that allows the viewer to apply the phrase to their own circumstances. Its like Kaufman wrote this film about you – ‘that’s what one hopes for, I guess’. Lurking all throughout is that element of concealed decay, that’s represented brilliantly by the bleak colours of the set. Early on they go to a farm and while their journey starts off sweet, they soon find a pig pen. Jake explains that the pigs had been infested with maggots that slowly ate them alive. There’s this stench of corruption that permeates even the nice moments. When they reach an ice cream parlor on thier way home, the contrast between the vein, dolled up waitresses and the humble serving girl with a rash, proves a vital instance of how the film communicates with the viewer. I had to watch the film several times and look out for those miniscule indicators of facial expression, tone of voice, timing.

Ultimately, if the girlfriend dosent face up to her emotions, either with her relationship or those revealed in the depressive monologue which opens the movie, then she will become like the pig, slowly being eaten alive by her own anxieties. Time bends around Jakes childhood home. The parents start to change age, becoming suddenly a lot older or younger as if to represent alternative futures and pasts for our main characters. When the couple first arrive at the parents house, the mother and the uncertainly named girlfriend wave at each other for a long time, owing to that idea of being stationary, not moving forward for fear of the unknown.

Its when they start driving home through the blizzard that things start to get really interesting. Our two lead characters start talking about another movie centred on a relationship, and while the boyfriend is a fan and sympathetic to the characters, the girlfriend starts reciting a scathing review, where she deconstructs the characters and the narrative, adopting an uppity sneer in doing so. This is in my view the most revealing moment – the boyfriend is empathetic to the concept of established narratives and expects his relationship to be a successful one. The girlfriend on the other hand, while desiring safety, has contempt for narratives as a whole. Its incredibly relatable – I’ve found myself creating those expectations to do with how I expect my life to pan out, only to be disappointed upon noticing I have pinned my hopes on a fiction.

In the final scenes we come to Jakes old school, where he goes missing in an attempt to confront someone he believes is watching him. Its here that we meet the janitor – a character who you have great sympathy for when you realise that this is the Jake who didn’t get to live out his fantasies. Saddest of all he still has that sentimentality, despite being seen by the world as just another old man. What follows is a dance scene between two caricatures of Jake and the uncertainly named girl, which feels reminiscent of a romance from Oklahoma or any number of assorted fairy stories. Constantly, the janitor figure tries to interrupt the dance, either in an attempt to wrench back that youthful innocence or to break apart this fictionalized image of this perfect relationship and restore ‘reality’.

One of the most poignant lines comes not from any of the main characters. Its not clear who the speaker is but the line runs ‘Someone has to be a pig infested with maggots, it might as well be you’. Its a dejected quote, which says you might as well be resigned to stay in situations where you are not in control of your life. Are we just part of somebody else’s narrative, constructed for us so they can say ‘I succeeded’? Or are we free actors, in control of our own lives, but naively setting expectations for ourselves? Indeed, isn’t it normal to fall into a routine of setting narratives and fantasies for ourselves, only to be upset when we witness them collapse?

‘It’s tragic how few people possess their souls before they die. Nothing is more rare in any man, says Emerson, than an act of his own. And it’s quite true. Most people are other people. Their thoughts are someone else’s opinions. Their lives a mimicry. Their passions a quotation’

Uncertainly named Girlfriend, I’m Thinking Of Ending Things

Considering this is a film designed to be interpreted, how do we square its themes with an overall understanding of autism? My past few works have been about the phenomenon of trying to mask ourselves to fit in. In that sense, many autisitc people are in service to a fictional narrative of normality that others construct for us, and can very easily relate to the girl. Still, there’s a lot of common ground the autistic viewer could find in painting an image in ones head of how you want your life to look. If you look through my past blog posts you’ll see numerous cases of where reality has confounded my narrative. Like the boy in the story, I have quite a sentimental worldview and find falling into those ways of thinking incredibly tempting. There’s more I have never told my readers about. Part of the reason this film works so well is that like a sad landscape painting, we see ourselves in these stories. We all have elements in our life at some point which we think of ending. We keep them close to our chest and mull over them because we don’t want to upset other people. Its that nebulous of doubt and uncertainty inhabiting this movie that makes viewing a relatable and sobering experience.

‘I’m Thinking Of Ending Things’ is available to view on Netflix.

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.

Blending In: On autistic camouflaging

Have you ever been in a situation where you’ve felt the need to hide your identity, pretend to know more about something than you do, or felt like an outsider? Chances are, that for most of us, the answer to that question will be ‘yes’. Whether through trying to be part of a group or finding yourself in environments where you don’t understand anything going on around you, we’ve all experienced that sensation of being ‘locked out’.

Autistic people experience this more and in some rather adverse ways, compared to thier neurotypical peers. This process is called ‘camouflaging’, ‘masking’ or ‘compensation’. Put simply, this occurs when autistic people feel like they need to pretend not to be autisitc. This involves very careful and deliberate monitoring of our day to day behaviour. Taken on a simple level, this might involve forcing oneself to make eye contact. Yet masking manifests itself in more sinister ways like feeling the need to study the speaking patterns and personality traits of peers to seem ‘normal’.

Confession: In my first year of uni I did this all the time because I was socially awkward and I thought through trying to copy the sense of humour, hobbies and routines of other students, that I would somehow increase my social acceptance. It worked in some respects, yet at times felt weirdly forced, like I was putting up a façade. To be honest, the moments I remember most from university were those where I could engage in my nerdy interests of music or politics with likeminded individuals, who while not always necessarily understanding my quirks and special interests, appreciated them.

This is quite widespread as well. In one study, 70% of autistic people reported having used camouflaging techniques. However, until the past five years or so, its seen almost no research. In understanding why camouflaging happens we know that many do so to avoid bullying. Notably, many do so out of a sense of obligation, rather than choice. There’s being alienated from social circles, and then there’s the threat of being alienated, which is arguably worse. All this shows how difficult it can be to navigate environments set up primarily by and for neurotypicals. As stated at the beginning, being ones authentic self is not easy for anyone, but facing a choice between social expectation and being oneself on a near constant basis, can prove mentally and socially trying.

‘Putting On My Best Normal’

Its worth pointing out that not all autistic people see masking as a negative. Some point out how it can help them overcome shyness in social situations, or help them in areas such as the job market. Even I acknowledge that in order to interact effectively, a degree of masking is required. I point this out cause when I talk about society being geared towards neurotypicals, I don’t mean that I expect there to be no situations where autistic people need help to overcome some part of ourselves.

That said, the expectation of camouflaging can hide an individuals difficulties, preventing them from being helped. An autistic employee who struggles to disclose to thier employer because of fear of how thier coworkers might see them, or because of the pervasive myth that being honest about ones difficulties is the same as asking for special treatment, is at far more risk of mental exhaustion than someone who is entitled to ‘quiet time’, mentors and other means of support.

Perhaps unsurprisingly, camouflaging can even prevent diagnoses. This is paticulary common in women with autism, to such an extent that we spent years believing that autism is primarily a male disorder. In these instances, undiagnosed people struggle to understand thier own difficulties, as well as thier own talents, and seem trapped in social situations that are overtly critical of the way they behave. Speaking as someone who has a sibling who went through school feeling ostracized by social circles and misunderstood when they would have meltdowns or struggle in certain subjects, that feeling of being locked out must be disorienting.

Also unsurprisingly, masking is associated with mental health struggles. Autistic people who camouflage tend to report higher rates of anxiety and depression. This might be for a number of reasons. Even in areas such as my own writing where I’ve often held myself to an unusually high standard based on other writers, or my attempts to blend in socially, starting from the perspective that I need to hide my personality undermines the confidence I have in myself. There is a strong judgment inherent in the idea that you need to hide your autism, that your true self isn’t acceptable. This ultimately causes people who are masking to avoid asking for the help that they need.

And it isn’t thier fault. There’s a culture which surrounds ‘independence’ that says to people who have been diagnosed that support is there up to a point but once you cross a certain threshold, be that a certain age or stage in your life, asking for support is immature or entitled. When places like my university take away the ability for students to talk to thier notetakers, or placements brush aside requests for help with ‘I’ll just leave it to you to figure it out’, they are stigmatizing the already difficult process of realizing you need help, and going after that support.

Lastly, masking is exhausting! If you’ve ever been in a very different culture – and I mean that in every sense – you’ll know how it feels to be ‘out of your depth’. Now imagine doing this every day for your entire adult life. Neurotypical people unconsciously use a process known as ‘mentalizing’. This is where you figure out someone’s intentions or mood from looking at their behaviour.

One study found that when autistic people were asked to read a short paragraph, or watch a short film focussed on a character, they struggled to describe the characters intentions. Yet, when they were interviewed in a study looking for autistic traits, they appeared neurotypical. These ‘good compensators’ were able to observe and copy neurotypical traits without internalizing outward signs and signals and what they mean. Whereas, the ‘poor compensators’ still struggled with mentalization, yet demonstrated autistic traits in the interview process. Interestingly, the ‘good compensators’ reported higher levels of anxiety which challenges the concepts that compensating is universally desirable, or the same for everyone, whether they are autistic or non-autistic.

Admittedly, we are not sure where cause and effect are coming from here. Is it that autistic people are more anxious about the way they look to the rest of the world? Or is it that compensation itself leads to mental exhaustion? If I had to guess I’d probably say that its a combination of the two but for the purposes of this, its kind of irrelevant: the point is that those feelings of ‘burnout’ exist. It must be really frustrating for those in certain jobs for their employer not to understand why they have trouble communicating, or for those at school to face the penalties of being uncommunicative.

When I do disclose in social situations, I sometimes get met with a sort of vague disinterest by people who can’t see how and why my condition applies to them, all owing to a general lack of education about autism. An autistic friend once told me: ‘I have lovely friends but its not me that they are friends with, its the person I pretend to be’.

Taking Off the Mask

Before the coronavirus caused the very same hashtag to be hijacked by ‘anti-masker’ idiots, #TakeOffTheMask was a positive Twitter campaign aimed at encouraging autistic people to be themselves. It was met with some backlash, by people asking ‘what about those who use masking as a coping strategy?’ In fact, they weren’t entirely off the mark.

In a sense camouflaging – to bring it more in line with the original definition – is adaptive. Its a creative response to difficulties, but that should make us wary of the question ‘why do autistic people feel they need to act in this way?’. The evidence to date shows us that using a façade has negative effects, and so we shouldn’t be speaking about the idea as if its simply a useful technique.

While research on this is relatively recent, theres a wider point to be made here about the role of the individuals and institutions which surround us. When I as an autistic person explain my struggles, the baseline assumption is that they arise from my own personal defects. I shivered a few months ago when someone introduced me to a mutual friend as autistic, prompting them to respond with ‘ah, I’m sorry, I know quite a few people with that problem’. For clarity, they weren’t being mean, it just illustrates my point. ‘he’s got problems’ became a buzzword in my school for explaining why I needed help. I even used that term several times, having internalized the idea that there was something wrong with me.

The information we have on camouflaging reminds us that this is false. As Will Mandy points out:

“The problems autistic people face arise from a misfit between the individual’s unique pattern of strengths and difficulties, and the demands their environment places on them”

Social camouflaging in autism: Is it time to lose the mask?

One example which is generally given of this is autistic people who refuse to go to school. This is something I am personally familiar with as that sibling of mine, which I mentioned earlier, had this problem. They would refuse to attend school and when challenged, would recount how much of a difficult experience they found education – remember they weren’t diagnosed at this point. And while this comes down to the concept of pragmaticism and principles, it’s not unreasonable to argue that – using education as a starting point – our institutions should look at weaknesses as something to learn from. Additionally, everyone should have opportunities for support and creative learning i.e to go about thier activities in ways which allow them to meaningfully engage with them. If a significant number of autisitc people are just going through the motions in education – and then, later in life, are finding themselves shut out by the ‘real world’ to such an extent that they have to pretend to fit in, our systems and ways of designing society need a rethink.

An Atypical Perspective…

Seeing the difficulties of autistics needs an ecological approach: By looking at the difficulties autistic people face in a wider context, we can see how attempts to intervene on autism should not try and change the individual, but improve the relationship between the individual and the environment. No one is saying that the approach shouldn’t involve helping autistic people learn better social skills, simply that refusing to make adjustments to the environment, puts undue pressure on autisitc people.

Masking should be seen as more relatable: The irony with all this is that if you put most neurotypical people in an environment of autisitc people who stand at multiple different places on the spectrum, the likelihood is that they would feel like an outsider. Its the same as when your trying to make casual conversation with people who think differently, or have different interests to you. The issue is that we tend to think of those awkward encounters as temporary blips, and not huge problems. This overlooks those of us who spend out lives feeling like outsiders to a world that frequently dosent appreciate different perspectives or ways of being.

There should be more education about camouflaging and autism: Before the #TakeTheMaskOff campaign was hijacked, it helped give a voice to autistics who generally said that they would like to not have to mask thier true self all the time. An active programme of education is needed both in our schools and our workspaces, to shape public attitude and to increase autism acceptance. This can help create more community, educational and work spaces where autistic people are free to make thier voice and perspective heard. A measure of success will be if more autistic people feel able to stop camouflaging as often.

Autism and logic: Do people on the spectrum make more rational decisions?

Decisions are based on the way choices are framed.

Most of us use emotions when making a decision. Something I’ve always struggled with is body language, so there have been moments in my life where I’ve come across as dismissive or rude, when I haven’t meant too. Equally, If a surgeon tells you that you have a 20% chance of dying from an operation, thats going to be significantly less reassuring than being told you have an 80% chance of surviving. Its not so much the meaning thats important, its the means used to convey meaning.

I’ve described before the way in which I perceive the world is quite overwhelming from both an emotional and a sensitivity point of view so I am quite prone to using shortcuts in my thinking, like having a reliance on routine. One negative of this is that there have been scenarios where due to my overreliance on routine, I feel like I’ve missed out on experiences. This is why advertisers use terms like “don’t miss out” but also presume to know what “you love”, appealing to your base instinct for familiarity. Despite this, scientists are still trying to understand why emotions have such a powerful influence.

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As an autistic person, am I less likely to be influenced by my emotions? Some studies seem to think so. Indeed, they attribute this to ’emotional blindness’ – the process by which autistic people have trouble deciphering thier own emotions as well as those of others. When given 50 pounds in a gambling scenario, people are more likely to gamble their money if they think they are going to ‘Lose 30 pounds’ than if they stand to ‘Keep 20 pounds’, even though both options are the same. Except when this idea was studied, although people with autism chose to gamble just as often as neurotypicals, the phrasing of the opportunity had less of an effect.

Participants were also asked to close their eyes and count their heartbeats in order to measure how well they perceived their internal sensations. Finally, emotional awareness was measured using a questionnaire. Interestingly, of the non autistic participants, those who correctly monitored thier heartbeats and thus more in tune with thier internal sensations, were more susceptible to manipulation. Autistic participants however, were fine at monitoring thier heartbeats but there was no relationship between how well they did this and their susceptibility to the framing effect.

What about scenarios where there is a moral decision to be made? These ‘moral reasonings’ are measured in a famous test called the false belief test. The latest versions of the test asked questions like ‘a man traveling in Africa, encourages his friend to swim in a pond after seeing other tourists frolicking there. His friend gets bitten by a mosquito and contracts malaria, is the man to blame?’. In this test, autistic people tend to lean towards saying ‘yes’. In multiple cases, they assign blame to individuals who intended no harm.

All this is very inconclusive. The tests on moral judgement show that an autistic person is able to identify when someone has been through hardship, even if they struggle to distinguish between intention and effect. The ones on gambling show that autistic people can see through emotional manipulation. Speaking from personal experience, I know that I’m deeply emotional but also analytical and aware of certain media tricks.

This post will look at some of the reasons why this might be the case, and will assess some of the models we have for explaining ‘the autistic mind’.

Complex Minds

“My mind is associative and does not think in a linear manner. If you say the word ‘butterfly’, the first picture I see is butterflies in my childhood backyard. The next image is metal decorative butterflies that people decorate the outside of their houses with and the third image is some butterflies I painted on a piece of plywood when I was in graduate school. Then my mind gets off the subject and I see a butterfly cut of chicken that was served at a fancy restaurant approximately 3 days ago”

Temple Grandin

Complex systems, in simple terms, are anything that comprise multiple factors in deciding outcomes. For example, the food chain. There are multiple reasons why theres a ‘pecking order’ of animals – too many for one human brain to comprehend at once. Nature is also obviously in a constant state of change, which is another factor of complexity. Our inability to naturally comprehend loads of different factors as to why something happens, leads us to come up with simple answers – ‘this animal is higher on the food chain because its bigger’ – but this applies to multiple issues, which don’t have simple answers. Why do people become homeless? Why is there obesity? If you keep an eye out later, you’ll see that I have given a potential reason as to why so many autistic people struggle with mental health, when there are obviously many reasons.

A complexity map…Lucid, right?

Just to clarify, no one can comprehend complexity, not even autisitc people. That would stop humans from making mistakes because we’d be able to comprehend every possible outcome of each one of our actions. Attempts to chart every cause of issues like obesity can be equally as befuddling.

Despite that, there are some ways of thinking which are more details based than of others, and these come more naturally to autistic people. One of these is bottom up thinking. Put simply, this is the ability to see details before categories. Its the same skill which allows me to trawl through multiple sources and cut them down into a blog post. The autistic mind is bombarded with sensory information through multiple stimuli, allowing them to process detail.

Similar to this is associative thinking . In my very first blog post I talked about seeing connections between seemingly unrelated elements. Rather than my thoughts feeling sperate, each thought connects to the next like a great interconnected web of related and more loosely associated concepts. 

Finally, there’s analytical thinking. People with ASD tend to reason more logically and there is decreased susceptibility to the framing effect in people with Autism. This means that autisitc people are less influenced by emotions or instincts than neurotypical people.

All this should lead autistic people to make more logical decisions, right? Well, maybe, but not quite. As I’ll explore in this next section, the relationship between emotion and logical thought is not overtly simple.

Understanding or emotionless?

Lets clear up a misconception; autistic people do not lack emotions. I bring this up because some of the theories pointed to throughout this blog portray the autistic mind as being like a computer i.e better able to understand the nuances of data or the complex workings of institutions like governments. When it comes to me, anything involving music or politics provokes me to want to find out everything about why a genre exists or why a decision was made. That said, I still have a strong emotional connection to those topics as they are part of what defines my personality.

Ironically then, one complex system we have trouble deciphering is the way our own feelings work. The last major source of grief I experienced, was in 2015. That did effect me on an emotional level. For the next few days I kept forgetting simple tasks, and my attention and ability to do work was hindered. My body was clearly going through the indicators of grief, but it took a while for the feeling of sadness to hit me. It was like staring at my emotions through a glass wall. I was conscious of them, but until the glass finally shattered, I felt an odd sense of separation from them. Its an incredibly weird experience. In this case my head was certainly not connected to my heart.

This state of being is known as alexithymia and its one of the scariest factors in autism – its when you are quite literally estranged from your emotions. Different people have different levels of alexithymia and even some neurotypical people experience this form of ‘blindness’. Some autistic people experience this so severely that events like thier own wedding can feel leave them cold. I’m grateful that mine is on a low setting – like I said, I’m still quite emotionally vulnerable, but I cant deny that I’ve sometimes been in positive situations where I’ve been separated from how I’m supposed to feel. Those situations hinder my confidence and my social interaction.

You might be thinking, well you clearly feel strongly about experiencing alexithymia, how does that manifest itself? The answer to that is anxiety and depression. Indeed, this may explain why about half of all people on the spectrum suffer from these.

In individuals with alexithymia, the association between how someone feels and thier physiological responses is reduced. They sometimes report feeling strongly about something when their bodies are in a state of calm and at other times they may report feeling calm when, they are physiologically is in a state of panic.

“It seems to be this relative break-down in people’s awareness of their body’s state of arousal that plays an important role in symptoms of anxiety, both in people diagnosed with ASD as well as in the general population”

Sebastian Gaigg, University of London

The impact this has on decision making is debatable. When I walk in to a shop I think that I’m not that influenced by the special offers on display. Obviously, we’d all like to think that, but in buying anything, you still have to reach a slightly emotion fueled judgment about what you want. This makes shopping for anything an incredibly stressful experience for me, where I feel a need to weigh up the pros and cons and every item.

This dosent necessarily mean that I make better decisions or am more rational. While I might be analytical, its next to impossible not to be at least slightly influenced by to factors such as money, time and personal circumstance. In the case of the grief I experienced in 2015, that actually made me less rational, because while the disconnect meant that I was able to go about my routine, the fact that I was unable to understand how I was feeling made me less sure of myself.

This isn’t even all that strange. An emotional response often underpins our actions, without us being aware of it. Even if you rely on what you call ‘logic’, your logic might not be the same as anothers. I’m very much the type to jump to the conclusion that someone dosent want to speak to me anymore, after they make a harsh comment, and I’m ashamed to say that while the fear of that makes sense, its resulted in me missing out on opportunities to make friends. You might have a metaphorical file cabinet of resentments and thoughts towards people or places that you think you are logically avoiding, when really you are missing out on overlooked details. I’m at a point where I can admit that those people I avoided might have been going through a turbulent period in thier lives, just as I hope that people that I have accidently appeared rude to by crossing my arms or not making eye contact, can see a bigger picture.

“some of our “logical” assumptions and decision-making is actually influenced by his feelings. The bottom line is that all of us, neurotypicals and divergent thinkers, need to check in with our emotions to think genuinely logically”

Marcia Eckerd, PhD

An Atypical Perspective

Complexity can enhance out understanding of issues: Through learning to see issues such as poverty, homelessness or mental health on a wider, more detailed level, we might not be so quick to assign blame, and more eager to address problems on a macro, societal level rather than a narrow, single minded level. As somebody who often jumps naturally to bottom up thinking, I struggle to understand the thought processes of people who see the world in more simple terms. That said, I think a more detailed analysis of the problems we’re facing today, can aid our societies and leaders in decision making.

Defining the autistic mind as a computer is harmful: The reason I take issue with this is that computers are cold and emotionless machines, adept at comprehending complexity. While autistic people are very analytical and have detailed thought processes, the existence of elements like ‘special interests’ and the anxiety that can arise from not being able to decipher our emotions, proves that we are more than just replicas of ‘rain man’.

Emotion and logic are not always separate: To understand why you have reached the conclusions and beliefs which you hold, you have to understand thier connection to your emotions, and that what might be logical according to your interpretation, may be completely illogical to somebody else. Again, human minds cannot account for everything. Emotion is the tool we use to fill in the gaps in our knowledge, autistic people especially so.

Left Alone: The Challenge of Independence

Lately, more talk has focussed on the societal effects of the coronavirus. In many ways the debate seems to have shifted from getting rid of the pandemic at all costs, to still wanting to do that, while looking at the effects of peoples mental health, livelihoods and economic status.

Its interesting to consider this against traditional measures of success for people on the autistic spectrum. It is widely accepted that the frustrations of someone who struggles to find work or socialize may be heightened during these times, yet there is a deeper level to that which point at holes in how we asses an autistic individuals abilities to ‘function’. Most adaptive behaviour tests will asses community functioning, such as using transportation and social interactions. These are useful to measure, especially considering that factors like language comprehension abilities are understandably associated with independence and daily living skills, in both neurotypical and autistic people.

Some studies which have tracked autistics across age show a decline in living skills as autistic people reach adulthood. Particularly, they show a decline in day to day skills such as personal hygiene, and executive function skills, even affecting an individuals ability to perform tasks like crossing a road. However, here’s the issue: Those adaptive behaviour tests mentioned earlier do not measure an autistic persons ability to do something, but rather what they do.

Autistic adults entering a period of isolation may not be losing thier ability to perform day to day activities per se, but having less and less motivation to use them. This has been exacerbated by covid but existed beforehand. If I’m honest, due to the time I’ve spent ‘away from the world’ during lockdown, basic tasks that require a degree of executive function, such as using a cash machine, present themselves as slightly more awkward. On another note, I have a sister in her mid teens who was statemented for ASD during lockdown. While the diagnoses has helped put her life in context, she’s worried about how she might adapt to a post covid world.

I’ve written before about the ‘cliff edge’ that exists within autism. The metaphorical abyss that exists either after school or after higher education, where the lack of understanding towards autisitc people by universities and in the job market, leads to a general uncertainty among autisitcs about thier future. In that blog I spoke largely from personal experience, but I wonder what could have just have easily been had I not overcome the challenges I faced. This will look at the issues of independence and why some find the ‘cliff edge’ a sharper drop than others.

Measuring Progress

Measuring any individuals progress through life is a fruitless task. There are so many standards which you can compare someone against, that those studies have no absolute conclusion.

This is one of the reasons I take issue with the terms, ‘high functioning’ and ‘low functioning’ when describing autism – you sort of know what they mean, but not specifically. When I was a child, I was certainly not ‘high functioning’ in the sense of being able to deal with busy environments, or hold a conversation, yet showed decent imagination and writing ability from a young age. Its not clear if these terms are intended to describe the ‘severity’ of ones autism, thier functioning, or thier everyday adaptation.

In autism research, those who score above 70 on an IQ test are considered to be at the more abled end of the autism spectrum, or to be ‘high functioning’. However, this is a measure of intellectual ability and does not reflect how autistic people perform in the real world. Likewise, using observational techniques such as ‘severity’ as measurements can be equally as unreliable. I have relatives on the spectrum whose coordination skills are lacking and who practice stimming by erratically flapping thier hands. These terms are very limiting as they trap individuals in a category that is stigmatizing. As we’ll explore, being labeled ‘low functioning’ doesn’t mean you can’t do things, just that you may need support.

It doesn’t help that the vast majority of autism research is focussed on children, and diagnostic tests are significantly geared towards them, meaning there are potentially lots of autisitc adults who need help, yet have no guidance as to how or why. When it comes to diagnosing adults, medical professionals often ask for details about early life, which might not be available. Indeed, as far as I can tell, only about two per cent of autism research focuses on supporting adults.

What this means for autistic adults trying to live independently, is that they struggle to hold down jobs or sustain housing. In fact, for many, thier parents are the only support system they have in place. This might at least partially explain why so many adults on the spectrum end up living in shared accommodation with many other disabled individuals, and looked after by professional guardians. I know from my experience as a support worker that these environments can result in a great loss of personal autonomy for all those deemed to be ‘too disabled’ .

The reason for the heavy slant towards children in autism research is that families may sign up to be studied, hoping for a ‘quick fix’, yet may ultimately withdraw once they learn about the impossibility of a cure. Funding agencies also tend not to be interested in supporting studies that might help to tease out why the years after high school are difficult for many. That’s especially true for studies on services to help young people with autism transition to adulthood.

Growing Pains

Due to the limited consideration on what happens to autistic people after the age of 18, that remains a subject in need of further investigation. What we do know is that, like for most, this is an important period in establishing a foundation in adult life. This is the period where the expectations of finding a job, enrolling in further education, and living independently present themselves, and not having the support to achieve these can lead to large amounts of isolation among autisitc people; Many also have two or more physical or mental health conditions in addition to autism, making it difficult for them to meet these milestones.

This is made worse by the fact that progress can slow in autisitc adults after education. When I finished university, I found myself in that dangerous in between space – a void which was filled by volunteering with autisitc adults. In these moments, you do lose a lot of motivation. Even staying at home during the coronavirus has negatively effected my confidence. Part of the reason I am able to get through those periods of pervasive blankness is the support I’ve received with my mental health, or in finding opportunities to keep my mind occupied. I worry for those who don’t have that same support available.

Some psychologists such as Catherine Lord attribute this to the expectations of autistic people and their parents being higher, but also a ‘lack of structure’. While it is perfectly possible for an autistic person like me to become irritated by the overly structured environment that high school provides, the lack of any cohesion in life can be distressing.

In fact it may be the case that being forced into social isolation and the physical and mental effects that fosters, partly explains the prevalence of mental health difficulties, and physical health conditions like diabetes and heart disease in autistic people. Something as simple as missing a medical appointment, or a sense of not understanding yourself, can have a profound effect. Loneliness is also very common among autistic adults and can lead to depression. Access to health services also drastically declines after high school, leaving many autistic adults adrift.

“They’re under-employed, and they miss out on opportunities. They don’t get to participate in the things that will often get the rest of us out of the house and keep us healthier, emotionally and physically.”

Christopher Hanks, Centre for Autism Services.

Exacerbating these feelings of being withdrawn from society is that of the burnout and stress caused by masking. I acknowledge that its very difficult to differentiate good routines from bad ones. For example, retail jobs aren’t the highest paid, and I know from a few bad interviews that one of those jobs would’nt have suited me. Still, to some on the spectrum a job like that might provide a sense of certainty and routine. Perhaps one way to judge which routines are positive is to look at masking and to ask “are these routines leading to feelings of mental and physical exhaustion?”. While the current situation has put me into a position where I am constantly fighting off the latter, through both my writing and my work, I feel as if my creativity is encouraged. This has very much led to a situation where my mental health has peaks and troughs.

In a sense the current pandemic has underlined many of these problems. Without getting too political, an action like the UK’s governments recent decision to deny food vouchers to poor children is indicative of a larger attitude towards the vulnerable. Staying on that issue, many autisitc children have restrictive diets which schools can help to provide, but on a wider level its worth noting that people on the spectrum are not having some crucial cornerstone in developing independence hindered by receiving support. In many cases, its a lack of help and assistance which prevents them from reaching a level of mobility and self-determination.

An Atypical perspective…

Measures of success for autistic adults need to mature: While measurements of success will be inconclusive by nature, in conducting those studies it does not help to look purely at one measurement such as IQ or the vague ‘severity’ to reach a conclusion. While it may be the case that a combination of these factors provides a more detailed picture, the end result of any study which looks purely at personal attributes, will ultimately be to assign blame. Perhaps we should be looking at how best to support autistic people once they leave school, so that we can better understand how they cope when given the opportunity to unleash thier potential.

Autistic adults need more support to combat isolation: In this sense, isolation can mean anything from physical isolation – being stuck in patterns where you are not seeing or speaking to anyone, to the kind of isolation that occurs when one is shut out of the job market, or does not enjoy a meaningful experience in education. Overcoming isolation means having schemes and support systems in place, yes in order to help autisitc people become ‘productive’, but also to enable them to feel like they are achieving something worthwhile and that thier life matters. Through elements such as student radio in uni, and the change 100 scheme which allowed me to find meaningful work, I am on a constant mission of overcoming isolation. And while different forms of feeling shut out still rear thier head – notably through this pandemic – with help, I am doing my best to wrench myself from the anxiety which situations like these can inspire.

Narratives of ‘self-independence’ are often unhelpful: There is a common myth that giving people help creates an air of dependency and that to have any hope of succeeding, people need to help themselves. The idea has always seemed strange to me because we as humans don’t exist in a bubble and we all have a level of dependence on each other. In the case of autistic people these narratives are paticulary unhelpful because support is used precisely too encourage independence and achieving upward mobility in a society thats not always accommodating for those who are differently abled, can be a mammoth task, that requires a great amount of support.

Netflix reality ‘Love on the Spectrum’ is kind yet clumsy – An Atypical Review

Welcome to a new feature on atypical perspectives where I review a piece of media thats either about autism or resonates with me as an autistic person, through an ‘atypical’ lens. Like the pieces of prose I occasionally do, this provides a break from the in depth pieces, which are still the focus of this blog.

One subject I have not talked about on this blog before is relationships of the romantic nature. Struggles with communication do of course impact on autistic peoples ability to form those sorts of connections, including myself. For instance, I do feel comfortable telling you that being in my mid 20s without ever having been in a relationship serves as one source of anxiety for me, and many individuals on the spectrum are in the same place. While my experiences with emotion or going on dates has informed my review, I have leant closer to criticizing the programmes understanding of autism.

That said, I am uneasy about the treatment of autism and romance in popular media like its a novel phenomenon. ‘Love on the spectrum’ is no exception, but one positive is that on the whole, the show is honest. To clarify, all the relationships on the show are real and none of the processes of dates or ‘getting to know each other’ appear all that manipulated for ratings. Some of the events leading up to the dates do; I would rather more detail on how these people came to meet. That said, the show makes an effort to show different autisitc people at different stages: some like Michael have never been in a relationship, some like Chloe are in the stage of meeting people, and others like Ruth and Thomas are in relationships. Contrary to the sensationalism of a show like Channel 4’s ‘the undateables’ you can treat this like more of documentary about the lives of autistic people looking for love…Or at least, you could if the show didn’t decide to play so fast and loose with the facts and advice handed out.

I went to a pride event once. Participating in the parade was an autistic charity who had placards decorated with factoids including ‘only five percent of autisitc adults ever find love’. My friend – who is also autisitc – turned to me and said “they’ll believe what they want to believe”. I bring this up because its a widely accepted distortion of a 2018 study about marriage, made all the more popular by the fact that Olivia, a participant who provides facts and commentary throughout the show, repeats this idea. I don’t blame her, nor did I expect the production crew to correct her there and then. However, cutting the mistake might have been useful and the show might have benefitted from a wider focus on myth busting.

I do admire a popular programme with the word ‘love’ in the title actually showing the audience what love can realistically look like. Chloe is nervous about dating after a breakup but after one awkward date, has a beautiful one picking sunflowers with a girl named Lotus. Seeing her get back on her feet and grow her confidence across five episodes actually does live up to that occasionally condescending description of heartwarming. On another note, its a lot of fun seeing Ruth joke about her “nerdiness” in front of her fiancé Thomas and to see him explaining that he’s “just autisitc enough to understand Ruth”. However there are equally as many moments which baffled me. Chief among them is when the production crew, seemingly out of nowhere, ask Sharnae and Jimmy – a couple who are moving in together – if they have “consummated thier relationship”. All that this achieves is to make the participants and viewers feel awkward, furthering the idea that autisitc relationships are somehow inherently different to ‘normal ones’.

The ‘Love on the Spectrum Cast’ explain where they are now!

This brings me to the way the show behaves towards participants. Being on Netflix, its aimed primarily at neurotypicals. I don’t necessarily have a problem with this, however no preconceptions are challenged. All the dates are strictly between autistic people, which dosent do much to further the idea that we can and do date non-autistics. The background music feels inappropriate, swaying between overly cutesy like watching a doc on clumsy baby penguins, and ridiculously dramatic as if the dates on the show are life or death. Some of the attempts at humour are equally as tone deaf. In one moment, Maddi attends a fancy dress party for disabled people. With encouragement from the producers and her parents, she is literally pushed and pulled into using the event to try and find a partner. What follows is a filmed recounting of the awkward conversations she had as a result of being under pressure. While I have seen terms like ‘heartwarming’ used to describe this show, some moments are extremely uncomfortable viewing, giving the impression of a disrespectful spectator sport intended for an entirely non-autistic audience.

Even though the show has decided to help autistic people find love with each other, the producers seem oddly hung up on getting them to perform ‘normality’. A counselor named Jodi Rodgers provides support to some participants, and helps to shore up thier confidence, but some of advice she gives seems unnecessary: make eye contact, don’t talk about your ‘special interests’ too much. Its the same with the PEERS programme which features on the show – advice has its place but encouraging people on the spectrum to point out each others faults in the hope that they might date ‘like a neurotype’ undermines their individuality and gives the impression that in order to be happy they must master ‘le technique’.

Despite that, at its most endearing the show actually portrays scenes of people embracing each others autism in all aspects. One moment I paticulary liked followed Michael’s first date with Amanda, where she became overwhelmed by the formality of the restaurant. Michael accepts her decision to end the date early and they agree to go to a comic convention together, where they both have a great time, despite accepting that they’re friends and nothing more. This shows a process of mutual respect and learning. Similarly, prior to his date with Sharnae, Jimmy becomes agitated by the fact that his socks are black and not navy blue – with understanding tone and demeanor, Sharnae goes with him to the shop, they find navy blue socks, and have a lovely evening. These scenes help normalize autisitc quirks. Peronally, I get uneasy when I forget my watch when leaving the house, as having that one item with me gives me great comfort. These were rare scenes of unbiased and non-judgmental acceptance.

An aspect I would have liked to have seen more of, was the breaking of the fourth wall. Personally, I would feel under a great amount of anxiousness in a situation where I’m not only under pressure to impress a date, but also to seem ‘media savvy’. Still, the fact that they often turn to the camera to tell them to temporarily leave them alone or to clear up misconceptions, does show a laudable level of trust has been established between the production workers and the participants. Theres a worry with these sorts of programmes that the crew may cross boundaries. When creating or helping to make media about autism, theres always the danger of potentially revealing information about oneself that could be misunderstood or taken out of context. I reworded the intro of this blog 10 times before I was comfortable in what I was releasing. Certainly the people designated to work on this series should be aware of the discrimination autisitcs face, so that they do not nudge participants towards situations which may affect thier lives offscreen. As we’ve seen, the behaviour of the producers is mixed, so conclusions on that question are unclear. Thomas even makes a joke about this when Ruth compares thier anniversary picnic to ‘the Bachelor’. “Well it should be cause its all scripted” he quips, joking to the camera “excuse me, who forgot to email my girlfriend her script”.

Chloe’s date with Lotus proved one of the most popular on the show!

Of course, if we are to have any serious disscussion of this show, we need to talk about its representation. It balances male and female well but dosen’t explore gender on any deeper level. Outside of Chloe and Lotus which is really well presented, there is not much Lesbian, Gay or Bi representation. This is in spite of the fact that research continues to show that autistics are more likely to be on the LGBTQ+ spectrum or just reject conventional sexual labels altogether. The show is even more disappointing on race. Almost the entire cast is white. While these might seem like minor complaints, when a popular Netflix show with the word spectrum in the title does little to depict the full length and breath of people who are autisitc, that furthers the impression that I’m getting from the programme as whole, that it dosent want to do anything to challenge the viewer, or represent autism in unique and diverse ways.

Overall, Love On the Spectrum has the potential to combat misrepresentations about autisitc peoples ability to feel love or empathy, open minds to a whole new audience of viewers, and start conversations about autism and autisitc stories. When those moments shine through or we get a moment of pure acceptance, the show can make me beam with delight and happiness for the cast. Too often though, the creators feel conscious of thier audience and what they expect to see, rather than what they need to see. At best, this serves to dull the impact and at worst forces the subjects into uncomfortable situations. Put simply, this show feels like autistic people being used as inspiration for neurotypical people to reflect on thier own relationships. I respect the creators evidently good intentions and I did mostly enjoy watching. Still, in perhaps the most honest monologue throughout the entire series Michael says there is no such thing as the ‘perfect relationship’ because everyone’s different, and that couples can only try thier best to accept each other. Its a lesson which the show overall would do well to learn from, ahead of any potential second season.

Love on the Spectrum is available to view on Netflix.

Seeking Meaning: How history shapes our understanding of autism

As an autistic person who has experienced both acceptance and ostracizing for being different, the history of autism fascinates me. And there is a detailed history as well; one of misunderstanding, revolutionary thinking and activism, which has influenced how we see autism today.

That might sound strange. Surely most of our understanding of autism should come through analysis of behaviour and what autistic people have to say about thier experiences? And your not wrong about that, but one analysis will be markedly different from the other.

Issue being, a lot of the debate up to this point has focussed on how autisitc people express themselves vs. how others have decided to define us. Its the same with a lot of history. I have inevitably reached judgements about the theories and individuals which come to shape our understanding of autism today, but none of them are here to speak for themselves. Keep that in mind while your reading this.

The most egregious abridgement is lumping everything prior to the redefining of autism which occurred around the 1970s, as being an amorphous category known as “the early years”, and everything since as being closer to the ways in which autism gets seen today. I encourage you to fill in the blanks by looking at this rich and intriguing history yourself.

The Early years…

The first known use of ‘autistic’ was in 1910 by psychiatrist Eugene Bluer. He was studying schizophrenia patients but noticed that some of them seemed ‘withdrawn’ from the world around them.

It wasn’t until 1926 that the definition of autism was cleaved away from schizophrenia. Soviet neurologist Grunya Sukhareva used the term “autistic psychopathy”. For this reason, autism does not generally get viewed as a mental illness anymore. Despite that, given the lack of info distinguishing neurological and psychiatric disorders, I’m not strict about the terminology, insofar far as we can provide help for everyone and respect individual struggles.

For years, autism was classed as a subgroup, which meant that those who didn’t fit Bluers original mold would have gone undiagnosed. Psychologist Leo Kanner originally followed that model but changed his mind after he met individuals who did not display schizophrenia but did display what he recognized as autistic traits.

While Kanner was able to identify children who had been lumped into the broad category of ‘imbecility’ and give thier condition a name, his studies stopped at children. To make matters worse, he blamed mothers. To him, the mother of the autistic child was a cold one whose behaviour makes the child become an unfeeling robot. The ‘refrigerator mother theory’ took hold in the 1960s, and the medical establishment set expectations for mothers, whereby they were made to defend thier parenting to psychiatrists hooked on Freudian ideology. Popularizing the theory was Bruno Bettelheim of the university of Chicago, who compared these ‘horrors at home’ to his experience in Nazi concentration camps. It was not until his death in 1990 that he was revealed as a fraud: he had no expertise in psychology, never testing one theory.

Contrast this with the theories published by Hans Asperger. In the past he’s been cast as a heroic figure who opposed the Nazis. Though, new research suggests he was complicit with sending children to Spiegelgrund, which was set up as a collecting point for children who failed to conform to the regime’s criteria of “worthy to live”. Still, his research is undeniably influential. In 1938 he gave a public lecture which tried to frame autisitc children in terms of potential rather than defects. Asperger called some of these children “little professors,” arguing that thier autism was detrimental only when their environment was not suitable. However positive this sounds though, embedded within this was the concept of “Heilpädagogik” – therapeutic pedagogy – which promoted the popular idea among Nazi leaders, that in certain cases, people with autism made excellent soldiers. Asperger also wrote about the need to “carry out restrictive measures” against patients deemed to be burdens “out of a sense of great responsibility” towards the German race.

“He was responsible for depriving of their liberty many children whom he deemed incapable of existing outside institutions” 

Herwig Czech, Molecular Autism

These present two competing visions of autism. One took autism away from the association with mental illness, bringing the definition closer to our vision of the syndrome today, but assigned blame in the process. The other began to introduce the idea of autism as a spectrum, yet condemned as many lives as were saved. This next section will look at how those ideas have changed, and continued to have lasting impact.

Reimagining Autism

“Nature never draws a line without smudging it.” 

Lorna Wing

The Diagnostic and statistical manual of mental disorders is vital. After being rewritten to account for the limited view of autism presented in DSMIII, it presented a modern definition courtesy of researchers Lorna Wing, Lynn Waterhouse and Bryan Siegel.

The work of Wing is paticulary important. She was curious about the people who met some criteria but went undiagnosed. In 1962, she founded the National Autistic Society. Through her work at the Medical Research centre she introduced the idea of the autism spectrum, whereby different people can experience autism in different ways. She said that it was very difficult and not all that useful to draw neat boundaries around some symptoms, so she incorporated into the DSM the ‘triad of impairments’ – broad difficulties in communication, interaction and social imagination, which help to define someone as being on the spectrum. While Kanner had dominated ‘the view’ of autism up to this point, in 1981 Lorna published a paper on the work of Hans Asperger which introduced the term Asperger’s syndrome. Despite my reservations about the man, this needed to be done to foster a more positive view of autism than that provided by the Freudian school of thought. Autism would now be viewed as a lifelong condition.

This work did introduce the ‘functioning’ labels, and while I don’t like the image those terms paint, they were a step up from the overly specific definition. In the late 1980s, the film ‘Rain Man’ came out, and while Dustin Hoffman’s character is portrayed as the ‘savant’ stereotype, in terms of representations of autism in pop culture, this was a turning point. Being born in 1994, I remember seeking great comfort from the fact that my autism made me ‘different’. I was very lucky to be born after a great social upheaval in how people thought about autism. This was a forward thinking time for studies of the spectrum…then Andrew Wakefield came along.

With so much talk on autism, panic about the causes ensued. Everything from polluted water, to cellphones got blamed. The U.K. Department of Education confirmed that the increase in cases was due to better recognition, but rumors continued to grow. Wakefield published his now infamous article claiming that vaccines cause autism. Not unlike Bruno, he was not qualified to speak on this issue – his expertise was in viruses. Regardless, his work was presented to the press and moral panic ensued. However, research soon came out that debunked these conspiratorial claims. His medical license was revoked, and eventually the entire paper was retracted and deemed a fraud. Despite evidence of Wakefield’s dishonesty and claims of child abuse in his research, he peddles the conspiracy to this day, alongside a dangerous minority of anti vaxxers.

The most significant development since then has been the removing of the term Asperger syndrome as an official diagnoses to be replaced with the more general Autism Spectrum Disorder. Not everyone agrees with me on this but I view this as a positive. Ask 100 different people with Asperger’s syndrome how they experience thier diagnoses, and you’ll get 100 different answers. For this reason, ASD is more consistent with the knowledge we have about the triad of impairments and the spectrum.

An Atypical Perspective…

Autism may not be a mental illness, but we should avoid stigma: In a sense its good that we now have a sperate term for autism which distinguishes it from mental illness, as that has helped us to move away from narrow perspectives. I personally don’t consider my autism to be a mental disorder, but understanding my mental health is a big part of my life. In separating the two we should be making sure to avoid sending out a message of ‘we are not you’ and creating a stigma towards either group. Similarly, in brining together services, we should be trying to make sure everyone feels comfortable in thier identities and respecting how different people experience thier emotional, cognitive or behavioral struggles.

Our historical figures are fraught but influential: Looking at the legacies of figures like Bluer, Kanner, Asperger and Wing, we see a completely different set of personalities. While I see some worthy of championing and others very deserving of skepticism, I would not want to ignore the influence that a figure like Asperger had in fostering a strangely progressive view of autism, even if he was far from forward thinking in other respects. While I think Wings contributions certainly make up for her mistakes, there are some things she overlooked, like the potential damage that terms like ‘low functioning’ can do. As someone on the spectrum, I have particularly struggled with nuance in the past, even if the history of my diagnoses is fraught with those specifics.

Autisms causes are not as important as its existence: While I am eternally fascinated by the science behind what causes autism, if all we ever see are a lot of theories, then I will be content with that. With discussion of its causes, the chief risk is that we end up medicalizing the condition to such an extent that we stigmatize diagnoses, forgetting about its positive aspects. Obviously, ‘refrigerator mothers’ and ‘vaccines cause autism’ show extreme examples of that, and they are the ones that have made headlines. I’m very aware that there is better origin research out there. Ultimately though, I view chasing a cause as less important than understanding the spectrum and finding out how we can improve society, so that autism is welcomed in all corners.

Difficult Discussions: Where autism meets mental health

Tomorrow, as I publish this, is World Mental Health Day.

I’m not paticulary one for new years resolutions but the two I always make are a promise to talk to people more – seeing what I can learn be that from a colleague or a friend, and to keep check of my mental health. This year has not made either of those easy, and look, despite the urge to say ‘things are okay’, Its equally fine to admit that they are not.

Though, this is not another post about the pandemic. Its about understanding the connection between mental health and autism. Up to 70% of autisitc people experience mental health issues such as anxiety and depression. While I have never been diagnosed with any mental health conditions, I quite often feel a lingering sense of anxiety, and alongside that a lack of confidence in myself which only subsides at times where I’m comfortable in my routines and understanding of the world. We don’t know exactly what’s responsible for the prevalence of these difficulties in people on the spectrum. That said, there is research to indicate that a feeling of autism not being accepted as a positive aspect of ones personality leads to feelings of alienatiation.

I’m conscious of the way my autism marks me out as different both outwardly through affecting things like my speech, reactions and coordination and inwardly by impacting my ability to process multiple sensory stimuli at once, making me quite emotionally vulnerable. All these can show in social situations and therefore having my autism accepted is important to me. I have been in situations where I feel some of these aspects have ostracized me, making me feel somewhat depressed.

As human beings we have a natural desire to be accepted and to belong to a group. For autistic people, this presents a dichotomy where we can either disclose our autism and risk having it met blankly, or put on a façade of ‘normalcy’ and risk appearing strange to other people if we don’t ‘camaflagoue’ effectively. Both these forms of lack of acceptance can be harmful to an autistic persons mental wellbeing.

Interacting with emotion

One of the main challenges in confronting mental health difficulties and autism is deciphering the difference between the symptoms of anxiety and depression, and those of autism…

Take socializing. How do you distinguish between someone with no interest in social interaction and someone who who is incredibly socially anxious? And is it fear of ridicule thats driving that, or a generalized ‘irrational’ fear of talking to people? One of my special interests has always been in media. I’ve always admired journalists and creators, like those who investigated the Cambridge Analytica scandal and music journalists who have built up a reputation as freelancers. In uni I was understandably told I needed to be at all the cultural events, asking questions, reporting on social media, pushing myself to the forefront of the public eye. I’m getting far better at networking although its by no means easy, and while I took great pride in my special interest, I remember metaphorically beating myself up over the fact that I didn’t think of myself as confident or ‘savvy’ enough. I very much had and have a lasting uncertainty about the way my occasional lack of confidence would effect me in life.

I do certainly have a need to be on my own at times. That said, I don’t have any trauma from past attempts to socialize, which puts me in a semantic quandary, as only that would technically qualify as ‘anxiety’. The problem is that we’re thinking about the problem through a limiting lens. There is now more work being done on how autistic people experience mental health difficulties. Psychologists have started looking at ASD specific difficulties including factors such as fear of the uncertain, and a more general fear of communication. One interpretation of what I went through might be that my special interest turned into a constant source of fear or worry where I feared the consequences of what would happen if I didn’t live up to my own expectations; I prefer to think of the experience as a fear and difficulty in working out ‘what comes next’ contributing to those feelings of anxiety and worthlessness.

Still, why is it that these feelings are so inescapable for a lot of people on the spectrum? I do worry more than I should – usually about trivial matters. In fact, many autistic people report the same sense of lingering anxiety, often over something as benign as a pain in thier arm or how they organise thier day. This perception of the world as overwhelming might be down to the fact that autistic people sometimes overlook certain cues leading up to an unexpected experience, and that this exacerbates anxiety and sensory overload. I know there are environments and circumstances which I consider ‘safe spaces’, and that outside of them, I feel very anxious and afraid. While the facts around this are up for debate, there is some sound research and logic to support the idea. That said, given autism and mental health are on a spectrum, it would be a mistake to group the symptoms of both in together into one umbrella theory.

The consuming nature of how your mental health treats you, often makes you feel like no explanation can quantify how your feeling. I have states where my happiness is so overwhelming that the last thing I want is logic to come along and ruin my positivity, just as I’m sometimes in a state where even the idea that what I’m going through has a rational explanation, fills me with dread. That’s what this next section will look at.

Taking off the Mask

Lets return to this idea of distinguishing between a difficulty with mental health and a symptom of autism.

Going through a dark patch in your mental health seeps the life from you. However long it lasts, time seems to drag while its going on. You feel either a sense of worthlessness in yourself and your achievements accompanied by a sort of bleak negativity in everything around you, or a constant uncertainty in your actions which makes you procrastinate, worrying that everything you do is wrong or of no use to anybody. Physically, these sensations are met with extreme tiredness or aching.

I might call these patches autistic burnout or depressive episodes. However, I see both as interlinked. I’ve described before how I’m emotionally sensitive. So, something as small as a mean comment or a huge disappointment can impact me, messing me up mentally or bringing down my mood for perhaps a whole day. Another potentially harmful stage is the process of ‘biting my lip’ and muddling through, while trying to maintain a somewhat positive façade. This exhausts mental energy which further saps my ability to interact and communicate, all of which has the potential to create a rather vicious cycle of poor mental health.

Thankfully its not all negative. I have built up a level of awareness that allows me to realise when I’m going through a dark patch in my mental health and stop it spiraling into something bigger by seeking emotional support and trying to understand how I’m feeling through documenting my experiences. That’s not to say that everybody can do that. I realise that getting out of that cycle is difficult. In the period between leaving university and initially struggling to find work, my stagnant position led to a self-fulfilling feeling of hopelessness, which undermined my health both physically and mentally.

On a wider scale, this has serious effects. Autistic people are four times more likely than neurotypicals to experience feelings of dejection, insignificance and depression. This can severely impact even our previously learned independence skills. I know from experience, that not getting the opportunity to socially interact, makes my confidence plummet. It also warrants pointing out that autistic people are at alarmingly high risk of suicidality. I’ve been lucky enough never to have been in that frame of mind, even though I’m conscious of anybody’s potential to feel like that at some point in thier life. I’m also paticulary moved by the stories of those autistic people close to me, who have been through that degrading and awful mindset.

“People with autism often struggle to imagine the thoughts and feelings of others, including their own future selves. As a result, they may have trouble believing they will ever feel better. They can also easily become overwhelmed by the small but complex problems of everyday life and respond with extreme thoughts or statements”

Sara Deweert, Spectrum news

I had to include that quote as its so accurate, to the way I and many others have felt. When your emotionally hurting, one of the irrational questions that rears its head is ‘am I going to feel like this forever?’, and thats a scary mindset to get stuck in. I’ve never been very good at solutions, but the one thing I will ask you to do if you know somebody suffering with mental health difficulties or you think theres a possibility that somebody might be, is to show compassion. Just as a negative experience such as the pandemic can embed us in ways of thinking which feel inescapable, something as simple as a kind message from a friend can remind us of all those times when we’ve felt positive and that we will feel that way again. Remind somebody of that, this mental health day.

An Atypical Perspective…

Autistics experience mental health in different ways: We cannot look at mental health in autistic people through a purely neurotypical lens. While many peoples struggles to socially interact might be offset by past experience, many of us just feel naturally socially anxious. Whereas most have the ability to process changes in thier environment or circumstances quickly, our ability to understand and comprehend these changes may be severely impaired. Importantly, through the process of masking and wondering whether or not to disclose, we exhaust a large amount of mental energy which could be better spent. Obviously everyone’s mental health difficulties deserve attention, and nobody is more important than anybody else, but not everybody experiences thier mind in the same way. Realising that is surely a vital stepping stone in the pathway towards supporting individuals, over stereotypes.

Mental Health States can be consuming (and thats okay): As always, I can only speak for myself here but I know as an autistic person who is conscious of thier mental health, I can be overwhelmingly happy at times and utterly miserable at others. Its only in those two extremes that I can fully decipher how I’m feeling. When you occupy either of those mindframes, it colours every other aspect of your life, making you unable to see past your current emotion. Especially in negative mental states, its important to hold on to the knowledge that things are rarely that black and white and that the sensation your feeling is not inescapable, even if that does seem like more of an uncomfortable truth than something thats wholly reassuring. Through having that reassurance, we can realise that our mindsets are temporary and seek to understand why we’re feeling that way.

Compassion is aspirational: The simple act of sending a kind message to a friend is the baseline level of compassion and is definitely an amazing behaviour. However, compassion on a grander scale is worth aspiring towards. I’ve been trying to make myself and others feel better by reaching out to people I haven’t spoken to in a while and making plans to see them when conditions allow. In the long run, I’d like the current pandemic to result in more community initiatives to help the most vulnerable, every workplace becoming somewhere where people can feel mentally reassured, and mental health facilities expanded to reflect the wide array of experiences people have. While building fully compassionate societies cannot be achieved overnight, as a goal it provides a blueprint for making the spaces we interact in receptive to the needs of autistic people and all those struggling with thier own mental state.

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.

Uncertain Transitions: On the prospect of a second wave

I try and use this blog as a useful resource and not as a platform to vent , but as my country seems to gear up for a second wave of covid 19, I need to vent. Let me devote this next paragraph to that activity *breathes in*:

“What on earth was that last week? Here I am trying to create the mental energy to deal with these already stressful times and I get bombarded with anxiety. Upon finding out my area was going into lockdown, I was thrown into doubt about my work routine – something thats been keeping me sane for the past few weeks. Despite reaching a compromise over that, I’m still not sure which family members I’m going to get to see and when! Do we expect these restrictions to carry over into Christmas? Can we expect another national lockdown? More local lockdowns? This was the week when the stark reality of our uncertain future was thrown starkly into the light, and if the mixed messages are anything to go by, nobody, especially not the politicians have a clue what happens next!”

*breathes out* ah, that’s better. All joking aside my frustration does have a serious side. The prospect of a second wave is not something anyone is looking forward to having to deal with and anyone would understand the frustration many feel at having to suddenly revert to a lockdown way of behaving, or at least prepare for that possibility.

That may be why the nuances surrounding the implications of a second wave seem more apparent this time around. Maybe its to do with the frustration people feel at already having been through so much, and a mistrust of those who are supposed to be guiding us through? That’s not to downplay the seriousness of the coronavirus. It is very serious and requires us all to be vigilant bur we gain nothing by treating peoples frustrations as if they’re whining complaints, secondary to the ‘national effort’.

This blog post will address some of those anxieties from an autistic perspective, and asks how we can resolve them in a responsible way.

Autistic transitions

We tend to think about transitions as huge moments when someone’s life changes. While its true that those changes can impact autisitc people in adverse ways, we make transitions everyday.

Picture the scene: I’m going for a walk in the park . I take a cursory glance at social media which is a mistake under most circumstances, and see that my area has gone into lockdown. My mood immediately drops from pleasant to mortified. I negotiate with work, I tell them about my wellbeing needs and I agree to come in for about two days a week. I consider still seeing my family on the basis that I live with them.half the time. That said, I promise myself to stop socializing outside of those settings. After a serious and sombre message from the prime minister, my mind takes on a significantly more negative tone. Fully expecting to be met with a fearful and quiet atmosphere the next day, my mood heading into work is one of dejection. After I come into work I am surprised to find weirdly busy atmosphere, and relieved to see that people share my frustrations with trying to balance personal wellbeing and collective responsibility for keeping others safe.

This is an abridged version of how volatile my emotions can be when confronted with a combination of sudden changes and uncertainty. I’m not looking for sympathy but perhaps empathy. On Monday night halfway through writing a piece for my music blog I gave up the task and sobbed. I’ve described before how I’m quite emotionally vulnerable anyway but in that moment everything that had been weighing on me, finally made me temporarily collapse. For the past few days I’ve been carrying around a sensation which is hard to describe, but feels like an emotional heaviness. I’m going through a process of autistic burnout.

To anyone reading this who might be going through something similar, its okay to feel this way. In recent weeks more and more disscussion has focussed on the imposing of local lockdowns and second waves. For many of us who enjoy company and like to have routines in place which involve going places and being active, these are scary times. For many, including myself, a sense of safety as well as sensory stimulation and happiness was being built up through those routines, which we were already devoting effort and mental energy in integrating in to.

Now that things are getting bad again, we are being asked to transition to a new structure, and new way of thinking whereby we might not be getting that person to person interaction with friends or family members that so many of us need. This rightly makes us feel uneasy or even wanting to push back against the change. As an aside to that the uncertainty – the increased fear that things might change further, or that we might be plunged back into lockdown, makes preparing mentally and trying to plan out events in your head near impossible. As it currently stands, not too much of my post lockdown routine has changed, but the worry induced by still being in an uncertain position has caused me great amounts of anxiety.

The one piece of advice I can give for those feeling similar is to remind yourself of the temporality of the situation. Autistic people especially will be working particularly hard to mask how thier feeling, yet we can’t do so all the time as that expends precious mental energy. Its important to speak to people you trust and tell them how you feel. Indulge in that activity that always makes you feel better – for me thats listening to music. If you imagine your mental energy supplies like a tank these can all help replenish you in some small way. Anything that reminds you that this experience won’t last forever, will be incredibly helpful in getting you through!

Reason to be worried?

So far, this blog has focussed mainly on myself and how I’m feeling though as I’ve said time and again, I consider myself to be in a relatively priveleged position. I’m in stable employment. While it may not be that good for me to work from home I am able to do so. Being young without any physical health issues, I’m also at low risk of dying from Covid-19.

Spare a thought then for those who are dealing with this transition in thier lives worse than me. A few blog posts ago I detailed my struggles in uni and finding work, as an autistic person. I am very grateful that I don’t have to deal with the struggle of looking for work now, or being in higher education and experiencing even less of the camaraderie and friendship which rightly defines that era of life. Not to mention, that 10% percent of autistic people with physical disabilities or underlying health conditions, those who suffer from atypical immune responses like autoimmune disorder.

I have explained how how I personally suffer on the mental health front, however this is a vast and wide ranging problem. The Autism in Adulthood journal takes care to point out that with social distancing a key factor in reducing the spread of the virus, many of the services available to autisitc people have disappeared. I can only imagine what the people who I used to support on a voluntary basis are going through. We know that ongoing isolation and loneliness can be as detrimental to a persons health as smoking or fast food can be. Also, research done on the Ebola epidemic suggests that living through one may be associated with symptoms of depression, anxiety and post-traumatic stress disorder. As the journal just cited states: ‘Given that autistic people are already overwhelmingly likely to experience mental illness, and nine times more likely than the general population to die by suicide, the mental health consequences of COVID-19 may be devastating’ .

I bring this up as as far as I can tell very little has been considered about disability, either in Covid19 recovery planning or policymaking. Its not been entirely absent. Some support services as well as university courses have been put online, shops have introduced priority opening times for disabled customers, and mutual aid groups are helping to deliver essential supplies to the disabled, as well as hosting online meets etc. A lot of the community responses we’ve seen have been inspiring but in terms of national action plans for looking after disabled people during covid, and helping them deal with the effects of returning to a post covid world, I’m seeing very little.

In the UK, the response to the virus is looking less and less like a national effort that we all need to unite for and more like a curtian-twitiching dystopia. Last week the UK parliaments joint committee on human rights published a report which stated that “It is unacceptable that many thousands of people are being fined in circumstances where the lockdown regulations contain unclear and ambiguous language”. Government ministers have made admittedly non official statements encouraging people to snitch on people breaking the ‘rule of six’. This is in spite of constantly guidance over what you should or should not do, and an absence of financial support to employees or people self isolating.

The underlying moral here is: Give people who are anxious and worried the help that they need, while combining that with clear and practical instructions, and people will do what’s required. Create a climate of fear with an air of uncertainty as to what the rules are and whether they should obey them, and people kick back .

An Atypical Perspective…

Its normal to find transitions scary: If you view your experiences as a train journey and every sudden change as a diversion to some uncertain place, thats rightly going to make you feel anxious. In those situations we want to know where we’re going and what we’ll encounter when we get there. Not having that makes us uneasy. To overcome that worry, cling to the elements in your life which are more certain. Phone a loved one, listen to your favourite song. These help us to maintain that sense of order and certainty which are necessary for everyone’s wellbeing, especially autisitc people!

The Coronavirus is making disabled people ill (in more ways than one): Talking about peoples health and wellbeing with regard to the coronavirus is not an act of defiance against the restrictions. By contrast, its a plea to help the most vulnerable at this time. To have support services still in place to help autisitc and disabled people through the coronavirus period, so that we can be a more supportive society post-covid. Efforts to promote this have focussed on encouraging individual acts of charity, which while welcome, fail to confront the international crisis in physical and mental health, worsened by the pandemic. Rather, these problems require our leaders to pay attention and put forward a coordinated response that strengthens the ability of communities to support each other.

Creating a climate of suspicion is counterproductive: From an autistic perspective this uncertainty creates a sensation of information overload, where our base emotional instincts overtake our ability to effectively process all the information being chucked our way. This ultimately means that going about my routine for the sake of my own wellbeing, or seeing a family member that I live with half the time, becomes treated with a sort of suspicion. By mutual effect, this makes people especially likely to distrust authority and disobey regulations, especially when they believe they have a need which prevents them from complying. Considering that I have a fear of confrontation, especially from people in authority, the uncertainty fueled by our leaders furthers my sense of panic. Put simply, don’t confuse people, and support them where possible. With that mantra, we will hopefully still have a society once this crisis is over.