Defending the Spectrum: A guide to labels and portrayals

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

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

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

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

Defining Myself

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

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

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

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

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

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

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

Defining Autism

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

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

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

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

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

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

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

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

Lorna Wing, The Autistic Spectrum

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

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

‘Nature Never draws a line without smudging it’

An Atypical perspective

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

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

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

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

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

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

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

Peterson, 12 rules for life

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

This is a principle which spans across disciplines

The Influence of Words

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

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

David Ludden, Fifty shades of Grue

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

How do you decide what needs to be changed?

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

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

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

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

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

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

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

Words and Autism

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

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

Anne Hegerty, television personality

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

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

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

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

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

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

An Atypical Perspective:

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

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

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

‘This Snowflakes an Avalanche!!!’

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

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

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

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

Okay…that’s the answer I dream of giving

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

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

Bottom-Up Thinking

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

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

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

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

Samantha Craft, The innovative thinking style of the Aspergers mind

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

Tradition and ‘Standard Practice’

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

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

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

Danielle N. Martin, East Carolina University

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

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

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

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

An Atypical Perspective

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

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

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

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

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

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

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

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

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

Everyone’s Problem

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

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

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

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

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

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

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

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

DiAngrlo, White Fragility

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

My Opinion Doesn’t Matter

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

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

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

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

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

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

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

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

An Atypical Perspective…

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

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

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

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

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

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

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

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

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

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

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

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

Routine

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

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

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

‘Stimming’ and stimulation

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

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

AsIAm blog (2018)

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

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

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

Music and Writing

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

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

Frank Turner

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

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

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

An Atypical Perspective…

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

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

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

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

Information Overload! ‘Misinfodemics’ and the role of media

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

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

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

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

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

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

Stories

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

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

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

ELA area, public library

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

‘Misinfodemics’

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

Posters as part of an Ebola Health Campaign in the Congo

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

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

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

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

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

A Soviet Propaganda poster about HIV/Aids

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

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

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

Gynes and Mina, The Atlantic (2018)

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

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

An Atypical Perspective…

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

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

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

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

What are you Passionate About? Making Comparisons in a Complex World

“Name something that you’re passionate about”

I froze. I was sat opposite an interviewer at an assessment centre for Change 100 – a charity scheme that helps disabled graduates into work. “there’s lots I’m passionate about” I jokingly remarked, taking a few seconds to calm the whirlwind that had just ensued in my mind.

“I’m passionate about honesty in journalism. I did my dissertation on ‘fake news’…and I became interested in trying to discover the truth. That’s what I’d like anything I do to be focused on, whether media or research. I think that relates to my strengths…I try and be honest with people, about my abilities. What I can do and can’t do. I’m always trying to learn”

*Internal screaming* what on earth was that? I’d just given them a long answer on honesty in journalism, that tried to connect ‘fake news’ with being honest about your abilities! That couldn’t be called straightforward.

Skip ahead. It was the Thursday before Easter 2019, I was stood on a train platform in Oxenholme for a camping trip when I received a phone call: I’d been successful and secured a placement in communications!

Like a spider slinging a web, I began to make connections. Honesty led into seeking truth, leading into Communications: Gotcha! Later I was invited to be an assessor at a Change 100 assessment centre. I heard answers on everything from animal habitats, to the similarities between washing machine and career cycles.

Hearing different explanations of subjects which are seemingly related is fascinating. I’m not patting myself on the back here. Sometimes not being able to think simply is a pain. That’s why people use mental shortcuts.

Mood’s are one example. If we’re ‘happy’ that’s probably due to a range of factors causing chemicals to be released in our brain, and calculating a series of memories to find the right emotion. One description doesn’t cut the mustard. (This is why I don’t get invited to family barbecues)

However, little did I realise, that skill would come in handy.

Connections and Coronavirus…..

Coronavirus is incredibly significant and complicated, so we find ways of simplifying the problem.

Example: Flatten the Curve – Basic idea: there is a line which represents NHS capacity, we need to keep the curve i.e number of infections below that line, to stop our hospitals becoming overwhelmed. Simple enough.

Clearly, hospital capacity is a complex problem. However, here’s a simple way of distilling the issue, and getting everyone to stay at home, practice social distancing, and wash their hands to the opening bars of ‘Welcome to the Black Parade’ by My Chemical Romance (That was the song right?)

However that doesn’t mean we should always opt for simple explanations. Here are some case ready examples of where drawing comparisons proves useful.

  • Historical parallels: During the Ebola epidemic, misinformation became a problem in the DRC. Media platforms, such as Facebook and WhatsApp, have been used to promote conspiracies since they entered popular culture. Perhaps that raises questions about being wary of misinformation now?

  • Personal Parallels: Different people deal with lockdown in different ways: some by emphasising healthy routines such as excersise and hobbies, others by making lists of everything they are going to do post lockdown. I’ve learned not to take anything for granted. What tactics can apply to yourself and what can you learn from them?

  • Organisational Parallels: There are widespread changes to society happening from regional governments opening up their archives, to police using new technology to communicate with the public, to the entertainment industry looking for new ways to raise funds. What can organisations responding to the Coronavirus learn from each other?

As shown, we’re constantly making links between different events or elements often without realising that’s what we’re doing – some doing this more than others. Drawing those similarities can pose some important lessons about how we organise our societies, our personal lives, and our institutions. Elements like watercolours: working in tandem with one another to create an expansive if perplexing picture.

I argue, we should not be dismissing these connections as insignificant, yet instead taking more time to analyse them and see what we can learn.

An Atypical Perspective…

  • What are you passionate about?: This is a great place to start making sense of the world. If you’re interested in ancient history, there might be societal lessons you can apply from the past. If you’re into music, that might be a cornerstone in your emotional development, as you sympathise and relate to the feelings on display.

  • Look further than shortcuts: Mental shortcuts like ‘this worked last time’, can be incredibly useful for finding ways of thinking about a problem. However, they can also provide oversimplified answers. If there’s a complex or difficult problem like poverty, or mental health, its always worth taking a detailed look at the causes, if only to give yourself a well rounded view.

  • The most insignificant of links can be valuable: Don’t dismiss connections because they seem flimsy. There’s no absolute connection between journalism and self-assessment. However, that view gives me a way of looking at things that allows me to hold myself and my work to a standard, and apply analysis, investigation and precision to different elements in life.

On that note, I will leave you with a reminder to stay inside, wash your hands…and thanks to the song lyric initiative, I’ve got just the tune!