Redefining Success: A neurodivergent understanding of ‘work’

Being autistic you experience the right to work – or even not to work – in different ways. The first is through the application process and the decision whether or not to disclose your autism to your employer. On the one hand, being autistic colours our experiences of everything around us so how we answer questions like ‘How do you perform in social situations?’ might be different from that of neurotypicals.

Disclosing at an interview or on application forms can have pitfalls and can shape the employers perception of you. If you are to disclose, how do you do that? ‘Well, I cope well in some social situations but in others I might need to stand in the corner on my own. By the way I’m autistic’. I know one person who used to work in an independent café and tried to disclose their ASD to their manager, to be met with the response ‘It’s not really bad, right?’. This attitude was reflected on one particularly busy day when they tried to ask for five minutes on their own, only to be told that that any quiet time would be deducted from their lunch break. After asking for ‘reasonable adjustments’ on multiple occasions, they were fired and underpaid.

In preferable, albeit deeply flawed scenarios, scholars and even some autistic charities, preach the virtues of neurodiversity as being good for business. ‘Neurodiversity is a competitive advantage’ proclaim Harvard. These are well intentioned yet stand by the market logic that autistic people ought to be defined in terms of their profit-making abilities. There’s a famous article by Simon Baron Cohen, where – to his credit – he says that the neurodiversity movement “recognizes that genetic or other kinds of biological variation are intrinsic to people’s identity” but argues that the movement ignores the more ‘disabling aspects of autism’. This is a common misunderstanding, so let me clarify:  we know that as autistic people we struggle with certain things, but we are not flawed. People with neurological differences are not broken copies of normal people, any more than we are mathematical machines. Often, being disabled is defined more by the conditions which society puts in place which force us to struggle, than by individual weaknesses.

To me, the crucial aspect missing from Cohen’s analysis is autonomy. If you’re an autistic person who instead of working, spends your days going to fitness socials, or volunteering or even just engaging in a hobby, your considered an unproductive member of the community. If you are in a job which you struggle with, well, looks like you chose the wrong career path…better luck next time, kid! All the while data scientists and engineers are touted as the autistic ideal, while Tesla and Google get to tell everyone about their oh so accomplished neurodivergent employees. I argue that we ought to be dismantling the barriers which prevent autistic people from finding meaningful work, while granting them the autonomy to decide how and if they want to be part of the economy.

There is a difference between impairment and disability…

“With impairment comes personal challenges… disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated…The disabled community argues that these disadvantages are thus not due to impairment by its nature, but due to a cultural aversion to impairment, a lack of productive opportunity in the current economy for disabled people. Disablement is a political state and not a personal one”

Sunny Taylor, The Right Not to Work: Power and Disability

Taylor goes on to argue for her right not to work. She’s a painter, who due to her disability paints by holding the paintbrush in her mouth. She does sell her paintings but doesn’t support herself with that money. She feels questions about that are a test to see if what she spends her time doing is a ‘legitimate’ hobby or not. She’s not denying her impairments. No neurodiverse or physically disabled people deny that they have tasks which they struggle with. Autism, for example, can come with certain allergies, or sensitivity problems. When we talk about not wanting to pathologize people, we don’t mean denying that autistic people struggle in social situations. However, not wanting to be around others is different from finding socialising difficult. These are both options which autistic people should be allowed to freely choose. Sadly, much of the business world and the psychiatric world treat these as indistinguishable from each other, and in need of remedying.

 In his article Baron Cohen cites some autistic peoples struggles to communicate as a problem that the neurodiversity movement are failing to address, but this is nonsense. As stated, autistic people can struggle to communicate. Additionally, many of us prefer to listen than to speak, or only interact with people we feel comfortable around. I still struggle with corporate language and when harshly spoken to; I struggle to focus on the content of the speech. I often need to ask people to repeat things several times occasionally, and you know what? I’m surprised more people don’t! That’s not meant to be accusatory, but to highlight how one of the biggest challenges faced by autistic people is neurotypicals reluctance to interact with those they perceive as ‘different’.

All these are barriers to autistic people finding and enjoying work. Even if you don’t work, the type of language and modes of communication you might face when going to a bank or a job centre, may not be accommodating if you struggle with social anxiety. There’s an idea called the ‘double-empathy problem’ which states that because neurotypical onlookers view autism in terms of how it looks, and not in terms of how people experience their autism, empathy between autistics and non-autistics can break down, especially in tense scenarios. The way people who know I’m autistic behave to me often ranges from oversensitive – ‘let me explain every word I say to you’ – to ignorant – ‘well you should have been listening if you didn’t understand’.

One example that always gets given is pretend play. Thinking in terms of neurodiversity, a child may prefer to observe other kids playing without necessarily joining in themselves. I have always been and continue to be an observant learner. The problem is we track progress on neurotypical developmental timelines and act like its strange when autistic people divert from that. For all the options Covid takes away, I think the new world presents an opportunity to give people -autistic or non-autistic – more choices about how and where they work, as well as giving us a chance as a society to reshape how we interact with people under stress, and how we decide what work is meaningful or not meaningful. This leads me to discuss the issue of independence…

Independence is a flawed measurement of success…

Continuing this idea of how we measure development, I would like to specify that I consider myself relatively privileged. I enjoy my job and feel supported there. This is by no means the case for everyone. In Wales where I’m from, the TUC believe that many autistic workers face “daily discrimination”, saying that their research shows that many employers are unwilling even to make even the smallest of adjustments to their workplaces. They go on to say that fewer than 100 companies have signed up to the positive about working with autism charter.  However, while I have a large degree of independence and intend to get more, there are other traditional measurements that I’m quite a while from achieving. Sunny Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”. In my case, while I’m able to go practically anywhere by public transport, I still don’t know if I will ever be able to drive, which many regard as a cornerstone in being ‘independent’.

When I did outreach work for autistic adults I met some people, who were better with directions and talking to people than I am but needed some assistance in cooking their own food. The point of the neurodiversity movement is to question whether being ‘independent’ means being able to perform household chores without assistance or being able to choose your friends. Considering this throws the employment question into a different light. An autistic employee might need help getting around but be great at their work. In so many cases though there’s a bar to entry for valuable professions where traditional measures of independence are used as a judgement on how the individual will perform in the workplace. If you manage to overcome those hurdles, you risk being talked down to by people who treat your perceived lack of ‘mobility’ as an excuse to speak to you in an infantilizing or patronizing way. 

As noted, I’ve only seen scratches of this in my current role, and much as intention doesn’t mitigate the problem, it’s nearly always been a case of easily corrected bias rather than anything malicious. On the contrary, overt bias is something which particularly exists in certain media circles. Its an industry more obsessed with mitigating the risk of anything going wrong, than you would expect. Being an autistic person in a newsroom or at certain PR companies very much consisted of being ignored and being given begrudging excuses of how putting me on a story or letting me tail a journalist would be ‘too complicated’. What right then do armchair commentators and media pundits like Toby Young have to label autistic people unproductive members of society if they don’t perform as ‘efficiently’ as some of their neurotypical counterparts, or don’t ‘work’ in the traditional sense?

I bet some of you are thinking ‘Well, I had to make adjustments to get to where I am. You can’t expect everyone to roll over for your personal needs’, but this ignores the fact that as well as there being neurotypical-centred expectations of independence, there are also neurotypical centred timeframes for when these milestones should be reached. Autistic people, like everyone, do try and learn new skills to better themselves. However, while a lot of neurotypicals might learn to drive at 18, some autistic people might not get their license until their late 20s, especially by the time they’ve built up the confidence and passed. I didn’t have any long-term work until the age of 24, and when I was much younger I took a long time to adjust to the sensory environments that encircled me during primary school. There’s a really interesting discussion to be had another time about neurotypical vs. neurodivergent time, yet the timescale on which you progress through stages in your life can effect everything from relationships to career prospects to education. What you can and can’t do at a certain stage in life can have profound impact on what opportunities you are offered and how you are treated.

An Atypical Perspective…

Ultimately, although the theming of this blog has been work and employment its messages apply on a grander scale.

The first thing we need to do is respect the choices of autistic people even when those choices seem inconvenient or not age appropriate. Workplaces in particular can make themselves more receptive to these choices by providing different working options, allowing people to choose their hours, or even democratizing their processes so autistic people don’t feel pressured. Reconciling how autistic people experience the world with the demands of ‘standard development’ means listening to them about what they can and can’t do and providing meaningful alternatives when an autistic person can’t handle certain circumstances or situations. It’s never letting a neurodiverse individual overhear themself described as “hard work” or “far behind,” and remembering that an inability to communicate doesn’t mean inability to understand.

More than that we need to do away with certain ideas of what success is and how to measure it. By certain measurements I’m sure you could consider me a failure. I’m 26 and I don’t drive, I don’t yet live on my own, and I’ve never really been in a proper relationship. And yes, I struggle with those feelings of worthlessness put upon me by a world obsessed with ‘achievement’ but overcome those moments by reminding myself that I’ve got time to achieve all of those and more, if I want to. Often, autistic people have to camouflage in reverse by detailing everything we struggle with and everything we don’t like about ourselves in order to secure access to certain benefits or support opportunities. In other cases, we have to pretend to be as ‘ordinary’ as possible in order for people to respect us as normal. Either we’re not autistic enough, in which case we don’t need support or we’re too autistic, in which case we can’t be respected as adults.  This creates a system where ‘success’ is continuously out of reach.

Ultimately, neurodiversity means just that: diversity. Some autistic people will never take an interest in cars or sports. Some will learn to paint but always struggle to communicate through body language. Some will understand emotion far more easily through the medium of song than through speech. Some will defy concepts of gender and sexuality entirely and identify as non-binary or asexual. There are enough resources in this world to accommodate for all of these, and with the help of autistic people there can be even more. The world requires all kinds of minds!

Quiet Confidence: The positives and negatives of being an ‘ambivert’

I am neither an extrovert nor an introvert. If you asked some of my acquaintances who only vaguely know me they would probably say that I am quite introverted, as I tend to be quite quiet and withdrawn, especially in unfamiliar social situations. Others, who know me more well, would say I am extroverted, as I’m more confident around these people, to an extent where I feel comfortable being quite open and honest. Interestingly, dictionaries have a word for people like me – ambivert. You might have also seen people who are in between the two extremes referred to as ‘omniverts’. Regardless of the terminology, this is someone who displays classic traits of both introverts and extroverts, in specific situations.

From my perspective, being autistic makes me more susceptible to ambiversion. The way my energy and emotional capacity works is I can be extremely sociable and outgoing one moment, while in the next I can be extremely socially conscious, awkward and demanding to be on my own. Similarly, if I’m secluded for too long, I get bored quickly, and agitated with my own company. It’s a mixed blessing as being an ambivert means I can enjoy being both social and alone, but I can never be truly comfortable for longer than the set amount of time which my mind allows me to be content. Its not just social occasions; in work I can be enthusiastic or full of ideas one moment, but after I’ve finished or while I’m on a break, I will be quiet, recuperating using music or a book and – as someone on the spectrum – less responsive to social cues, finding interaction far more difficult.

Some people plot these contrasting states on a continuum with ‘introversion’ and ‘extroversion’ at either end, which is accurate. However, I like to think of my mental states as more of a rechargeable battery. I stop short of saying ‘one which determines the effectiveness of the item its powering’ because that would be taking the metaphor to a ridiculous extent and would appear to imply that I’m at my least effective when I’m having a ‘down’ or introverted moment, when in reality I’m simply being me under different circumstances. Lastly, keep in mind that all these labels are completely arbitrary concepts, and you can never entirely accurately categorise someone as an extrovert or an introvert, as humans don’t fit comfortably into categories.

The definition of ‘Ambivert’ is abstract but useful…

I’m sure you’ve been asked plenty of times whether you’re an introverted or extroverted person. And when you were asked that there’s a significant chance you responded based on your experiences of being around people and how you feel in those situations.  For this reason, the introvert/extrovert dichotomy is something of a misnomer and reflects an outdated view of personality. Bradberry, writing in Forbes defines personality as ‘a stable set of preferences and tendencies through which we approach the world’. For autistic people certain elements of social awkwardness or changeable reactions may effect how people judge us. And, to harp on an oft repeated talking point, what about masking? If you’ve ever been in a social situation where you’ve had to live up to the assumed definition of being extroverted i.e confident and outgoing, even while your anxiety is eating you inside, then you will begin to see the dichotomy as quite limited. Adam Grant set out to study this distinction. He found that two-thirds of people don’t strongly identify as introverts or extroverts. These people are called ambiverts, who have both introverted and extroverted tendencies. The direction ambiverts lean towards varies greatly, depending on the situation.

Some people can confuse some autistic peoples shyness and social anxiety for introversion. Likewise, if an autistic person spends hours talking about their special interest fluently and confidently with people who are in their immediate social circle, they might be perceived as quite extroverted. But these perceptions might not reflect how the person in question see’s themselves. A person who identifies as an introvert might enjoy social interaction in small doses. Similarly, a person who identifies as an extrovert might enjoy being on their own in certain situations, for instance if their upset. This is why I like the term ‘ambivert’ – it gives a sensible third point with which to understand the states of introvert vs. extrovert as more opposite ends of a continuum, rather than a case of ‘your either one or the other’. But…hang on… if most people drift around in the middle of the spectrum drifting from one side to the other depending on circumstances, why do we need definitions? Can’t we just discard the entire concept? Well, we could, but I have been a bit popularist in defining my terms so far. Looking deeper provides a blueprint for how we might usefully understand and apply them…

How you recharge is important…

The idea of introversion and extroversion first came from Swiss psychiatrist Carl G. Jung in the early 1900s. He believed that extroverts were energized by the external wold and that introverts were energized by the internal world. He thought that extroverts direct their energy towards the world around them and gain energy from things like interactions. Introverts, meanwhile, focus their energy inwards, towards more solitary activities. This is still very oversimplified but as explained in the introduction with the battery analogy, I find the idea of ‘social energy’ quite useful. Indeed, in line with my definition for myself as an ambivert, both the internal and external world can build up or sap my energy.

Returning to the battery analogy for a second, I think there is potentially more to it than ‘I need to recharge after doing the same thing for too long’. If my battery is full and firing on all cylinders for too long I can become restless, anxious and often very emotional in a short space of time. If it’s empty for too long I will become distanced from my situation, unable to focus on what people are saying or start staring off into space. I both desperately need other people and desperately need to be alone at different times. Often when I’m at social gatherings, and there’s three or four groups each containing people that I know, I will wander between groups as different forms of communication affect me in different ways. As an autistic ambivert, regulating small elements such as how I communicate and the environment I’m in, is something I need to do as a coping mechanism. Lockdown has left many of us absent of those sorts of choices. I must admit that without tools such as the internet which allows me to watch a concert or talk to friends, I would feel even more isolated and unable to flick between different mental states. I think that while terms like ‘ambivert’ might be reductionist, they are useful tools in understanding how many people – particularly autistic people – interact with the world around them.

 Regulating sensory environments is key to being an ambivert…

Perhaps this should read “regulating sensory environments and internal states of being…”. I mentioned masking earlier in this blog post, and I feel its important to note that someone who appears withdrawn at a social gatherings might have good reason to be that way in the moment. Constantly being ‘on’ and required to live up to some expectation of how you should behave in that situation is not possible for everyone. One article I read doing research for this blog post said that: ‘a self-aware ambivert will lean toward the extroverted side of the scale, even when it has been a long day and he or she has had enough of people’ and while there is a grain of truth in this statement, it immediately follows the sentence up with ‘Mismatching your approach to the situation can be frustrating, ineffective, and demoralizing for ambiverts’ with no acknowledgement of how frustrating camouflaging can be.

This is why a healthy approach to regulating ones environment is needed. Its why I like having the option to be around people or on my own when I’m working. Its why I often block out busy environments by listening to music. Its why when I’ve been on my own all day, I find meeting up with a friend to be incredibly energising. Like I was saying earlier, circumstances are key, and so is having the flexibility to put myself in different environments when I feel the need to. This is quite often difficult and involves lots of planning ahead, so for example if I know I have a busy week ahead of me, I will often need to plan time to wind down the following weekend. Equally, being an ambivert requires learning to say ‘no’ when necessary. Its easy to become swept up in obligations, just as its easy to become caught up in not wanting to do anything in which case you need to tell yourself ‘no’. Its an odd and occasionally uncomfortable process of self-evaluation which can be tiring in itself, yet also liberating and positive.

An Atypical Perspective

I hope through reading this blog post you have come to a greater understanding of why questions around confidence and introversion vs. extroversion matter. The terminology of ‘ambivert’ is a useful if flawed way of understanding how many autistic people interact, and the struggles we go through to maintain a mentally healthy balance of being around people and being on our own. I feel as if there’s a presumption outside of the autistic community that we can’t socially interact and that our erratic behaviours are testament to our inability to communicate and understand people properly. This is disrespectful as many autistic people are tying to do just that – true, we ned to be on our own sometimes and our emotional states can be volatile and changeable. However, it’s not through an inability to enjoy and savour the experiences that we struggle, but through huge efforts to members of society while simultaneously cherishing our individuality as autistics.

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.

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.

The Empathy Imbalance: How autistics relate to others

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

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

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

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

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

Shallow vs. Deep Empathy

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

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

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

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

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

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

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

Imbalance

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

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

Empathy: The Ability that Makes Us Truly Human

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

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

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

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

An Atypical Perspective…

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

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

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

On A Cliff Edge: An autistic transition to adulthood

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

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

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

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

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

In My Experience…

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

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

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

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

******

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

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

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

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

Leaving Autism Behind?

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

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

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

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

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

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

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

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

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

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

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

Jim Sinclair, An Open Letter to parents of autistic children

An Atypical Perspective…

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

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

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

Contrasting Fascinations: On Obsessions and Special Interests

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

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

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

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

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

Understanding Special Interests

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

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

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

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

Responding to ‘Obsession’

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

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

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

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

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

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

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

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

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

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

Harnessing Fascination

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

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

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

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

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

Greta Thunberg

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

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

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

An Atypical Perspective…

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

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

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

Miniscule Indicators: An atomic theory of communication

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

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

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

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

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

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

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

Atomised communication

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

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

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

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

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

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

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

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

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

Laina Eartharcher, Autism and microaggression

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

Massive Effects

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

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

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

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

Darren Devine, Community living settings

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

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

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

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

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

An Atypical Perspective…

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

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

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

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

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

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

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

Peterson, 12 rules for life

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

This is a principle which spans across disciplines

The Influence of Words

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

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

David Ludden, Fifty shades of Grue

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

How do you decide what needs to be changed?

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

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

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

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

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

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

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

Words and Autism

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

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

Anne Hegerty, television personality

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

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

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

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

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

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

An Atypical Perspective:

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

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

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

‘This Snowflakes an Avalanche!!!’