PUBLISHED!!!

After being reviewed for a second time, the Languages of Sensing paper has been accepted  for publication! I tried to write something, but it wasn’t enough…so I made another video blog that attempts to express something of what I am feeling about this intense journey through academic disclosure and learning more about how I experience the world. 🙂

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On The Stigma Of Autism In Academia

The increasing number of disclosing autistic academics gives me hope for the future, and encourages me that I have made the right decision to do so myself.

Conditionally Accepted

Note: this blog post was originally published on our Inside Higher Ed column. Scott B. Weingart (@scott_bot) is a historian of science, Carnegie Mellon University’s digital humanities specialist and co-author of The Historian’s Macroscope.

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Stigma

Once or twice a year, my parents and I huddled into my little windowless bathroom. Our ears were glued to the radio as we attempted to calm a terrified golden retriever and waited for the hurricane to pass. While our dog never liked it, I always appreciated the safety that the room provided. In fact, I would often lock myself in the bathroom after school, sitting on the covered toilet with the lights off and a towel bunched against the door, blocking light and sound from the rest of the house. The best moments were those nights in that bathroom when it got so dark my eyes never adjusted, so quiet…

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On Being Autistic In Academia

If only more of this was published in academic literature. Finger’s crossed for my second attempt at submission…

Conditionally Accepted

AutismIn this guest blog post, Stella S. (a pseudonym) shares her experiences as an autistic academic, and offers advice for other autistic scholars (and everyone else) on communication, networking, and navigating academia while being visibly different.

The Impact Of Being Autistic In Academia

I’m autistic.

There, I said it in an academic space for the first time and even though I am writing under a pseudonym, it feels good. I was diagnosed later in life, after I became a PhD researcher (which I still am). Just because it took longer for me to know does not mean that you should call me “high-functioning” or “mild” or any other word that is supposed to make you feel better about my autism. I only identify as “autistic,” thank you very much.

I don’t personally know anyone in academia who is openly autistic. Due to this, I find it hard sometimes to make…

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Engaging Autism: My Guest Lecture

Here is a much nicer, much better quality recorded lecture that I gave recently in an environmental humanities class. It is based on the Languages of Sensing: Bring Neurodiversity into More-Than-Human Geography paper that I wrote last year, and triggered some really interesting questions from the students. For the purposes of the unit, I really tried to focus on aspects of what it means to be social with beings and entities that are not human, and what it means to be reduced to ‘less-than-human’ because of this, and because of the myriad of other deficits both impaired humans and non-humans have imposed upon them.

Also, this lecture is SO MUCH BETTER than the one I did for the Geographical Society of NSW, because I have learnt some new speaking tricks to help with my sensory challenges associated with my voice and verbal words: throughout this whole lecture, I had headphones on playing music that triggered positive sensory experiences that ground me and blocked out my unsettling voice! It seems to work well for me, and I am hoping to get to a point where I can use this method face-to-face for presenting, finally!

Autism: sensory challenge, overload and functionality at work (…and study).

Re-blogging in response to Sonia Boue’s blog: Autism: sensory challenge, overload and functionality at work. Featured image is also an amazing piece from this author’s blog post.

 

I think that for ‘neurologically biased’ we should read neurological privilege and allow that working accommodations begin right there. But first the bias must be revealed and spoken.

Source: Autism: sensory challenge, overload and functionality at work.

 

Being capable is so vastly different to being unaffected. I’m neurologically different, but very capable. To be capable, however, I have to allow myself to be impacted in ways that are often outside of my control…missing out on having my voice heard and speaking for myself, losing days of work time to recover from the exhaustive exercises of interpretation that come with every social interaction, re-balancing my senses after they are left raw from day to day noises that most people don’t even hear…

Sometimes, it seems like having a ‘disability’ in the academic world is a free ride and a ticket to advantages – extra time, exemptions from particular modes of completing tasks, all that kind of thing. But what is left unseen is just how much time is lost each week, and how much of my capability goes unseen/unheard.

 

The number of days lost is never predictable, only that there will be a significant sensory hangover with a loss of energy and resources. Modalities can shut down entirely – loss of speech or the ability to tolerate sound or light are classic effects. Retreat to a dark and quiet sanctuary for recovery time is unavoidable.

Source: Autism: sensory challenge, overload and functionality at work.

 

The worst part is feeling inadequate because of the energy limits, the recovery time. Feeling like you are letting the team down, disappointing peers and colleagues, failing to prove yourself, living in the shadow of impostor syndrome on top of Asperger’s ‘syndrome‘ rather than owning my identity as an Aspie – different, but not less. University disability services told me little over a year ago that:

 

…perhaps you should consider something other than research, something you are more capable of doing…

 

It’s offensive and limiting, because I am capable. But I am impacted by a limiting society. The ‘who you know, not what you know’ mentality, the over-valuing of extroversion and your ability to ‘sell yourself’, the hyper-focus on the myth that all humans are social creatures within a social species, the use of fluorescent lights in classrooms, and the meetings in crowded, painfully noisy/busy places. The idea that if on top of these challenges you also can’t speak up, if you can’t use the heavily verbal, spoken languages of one group…you don’t belong here.

My language is not a language of spoken words. It is one of thoughts and understandings that form through sensory pathways and are expressed in the ways that I relate to a highly animate world – both negatively and positively.

If you spent a day in the company of people whose ideas and mannerisms irritated, hurt, frightened or offended you….you’d be exhausted, and need time to recover. My sensory world is the same – but I cannot choose to not spend my time with those people. I cannot choose to not spend my time with the sounds of cars driving past, speaker announcements at train stations, the buzz of conversations unfolding all around me, endless rivers of colours and big printed words in the bombardment of advertising all around, the neighbours power tools, or the flickering noise of those damned fluorescent lights. My sensory world is detailed and loud. All of the time.

So much hurts. So much impacts. So much time and energy is lost.

But I am capable.

In The Shark Cage: Pushing Limits.

*Photo of me in a wetsuit the day after shark cage diving. Snorkelling is far less stressful than diving because I don’t have to put my head under water, just my face. The wetsuit remained a challenge that was offset only by the enchantment of being surrounded by sea lions.

The past few years has been a bit of an exercise in challenging myself to step outside of my comfort zones. For those who know me well, it quickly becomes clear that the laid-back, confident exterior I most often present is one that only manifests when I am comfortable and have the energy to collage together the vast array of personalities and characteristics that I mimic from others in order to conceal my otherwise underwhelming social skills. Beneath that, I am a quivering bundle of fear-inducing anxiety and extreme sensory issues that a long time ago held me back from experiencing the things I wanted to. Finding a connection with…no, an actual place within and as part of…nature has given me the courage (and at times remarkable reserves of energy I never thought I could possibly have) to push myself sometimes beyond my limits to experience my life the way I want to.

The recent attempt to cage dive with great white sharks has been a particularly daunting challenge. This has been a life long dream…I remember watching nature documentaries with my Pop as a child, and although I loved them all it was always the ones that focused on Africa or sharks that got me most involved. Two obstacles have always stood in the way of the cage dive for me:

1. the sensation of being submerged, particularly once water is over my head; and

2. the need to wear a wet-suit.

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Being in and with water is one of my greatest joys…so long as my head is above the surface.

I have never been able to swim with my head under water. I can’t even put my head under water in a bath tub to wash my hair!! The sensation of water enclosing my head, face and ears is like people putting their hands all over me…I can’t stand the way it feels on my skin, my skull, my muscles, my nerves, everything feels on fire or like it is being crushed. Add to that my extreme sensory resistance to tight clothing and particular material fibres, and you begin to get a picture of why underwater activities in wet-suits may pose a particular problem.

But at some point, I had to ask myself: how badly do I want this? Clearly, the answer was BADLY!!!

So I got in the wet-suit, clenching my teeth the whole time. Once I was in it, I coped a lot better than when it was rubbing against my skin. The tightness seemed to vanish once I was in the water, thankfully. Being under water, however, was a less manageable experience. It took me about 10 minutes of bobbing in and out to finally keep my head under water for longer than a few seconds. Being able to have my eyes open and to breathe through the regulator was a strange experience, but once I got the hang of that and learnt to trust that I would be able to breathe and see, I felt a lot better down there. The ongoing problem, however, was the noise.

BANG! BANG!! Gurglegurglegurglegurglegurgle!! BANG!!

We were unfortunate enough to have choppy seas, and so my cage was non-stop banging against the boat as it was knocked about in the waves. To make matters worse, the bubbles from the regulator made an all-encompassing cacophony that unfolded entirely around my ears each time I exhaled. Auditory sensory processing is a big issue for me, and this made being in the cage extremely unpleasant. I had to work through a panic attack under water at one point, because I could feel myself getting tunnel vision and proprioceptive disorientation from the noise. Reminding myself to breathe slowly reduced the frequency of the noisy bubbles and calmed me down, but I remained tense. Eyes-bulging-out-of-my-head kind of tense.

A short snippet from my GoPro of me in the shark cage (and the wet-suit!). You can hear the bubbles from my regulator, and towards the end of the clip you can also hear some of the banging of the cage against the boat. These things were significantly louder in real-time, and probably greatly heightened to my sensitive auditory senses. It was an extremely difficult challenge.

I was down there for approximately 30-40 minutes on my first dive. That is something I am proud of. I lasted a lot longer than I expected, and for a brief portion of the time I was the only person in the cage, which is utterly terrifying. I acknowledge that part of my longevity was to do with being distracted by the fish and some of the most incredible floating invertebrates I have ever seen! But another part of it was my determination to work through my sensory issues and anxiety, out of sheer love and desire to encounter a shark.

Sadly, I didn’t encounter a shark. But I did get back in the cage later in the day to try again. So I felt that I had achieved something significant – I had pushed myself to what I once thought was my limit, only to discover that my limit is just that little bit further away now. And I know that the next time I have the chance to encounter a  shark, I can do it. I can do it. Those words are important to me.

While I don’t think it is necessary to attempt something so extreme, I do have to recommend pushing ourselves – those of us with our neurodivergent peculiarities and struggles – at our own pace to find out what we can and cannot do, and at what cost. I pushed myself and achieved something great…but here I am four days later still exhausted and recovering from it. Yes, I can do this. But I can not always do it, and that is something critically important to be aware of.

People have asked me over the past six months while working on my neurodiversity and more-than-human geographies paper whether or not I think de-pathologising things like Asperger’s, depression/anxiety, mood affectiveness, and other mental health and neurological differences would result in the much-needed care and support services being removed. My answer is no, not if neurodiversity is framed carefully and accurately. To say we do not experience limitations and difficulties is to disregard the reality of a vast majority of experiences. But ‘acknowledging’ is very different things to deeply maligning or stigmatising. I argue instead that the primary goal of neurodiversity ought to be towards challenging society to become less rigid in its definition and understanding of a ‘normal neurology’ and more enabling of those of us who are capable of being capable at some things, but maybe require a different approach to ensure that our needs are met in a way that facilitates that capability.

I’m glad I got in the cage. But it has taken a long time and a lot of little steps to get to this point. If you do push your limits, be careful and mindful of yourself and your needs. Start small, start slow. And be ready to be kind to yourself if you have to say no, because removing yourself from something you cannot cope with is not a sign of weakness, but rather an indication of your strength and wisdom to know thyself. Knowing is the first step towards managing and coping.

BLOG ASSESSMENT 5: Reflections on Languages of Sensing

Some professional and personal reflections on the Languages of Sensing project, academic disclosure of my Asperger’s experience, and what I have learnt from the process. Hopefully there will be a sixth blog that will be the full presentation of Languages of Sensing: Bringing neurodiversity into more-than-human geography hopefully by the end of the week. 🙂

Blog Assessment 4: Verbal Communication

As part of my research and reading for this project, I have been encountering big methodological questions around how to include our non-verbal fellows into geography research. So, I thought rather than write a long, formal blog post I would make this an exercise in comparison between the writing style of my previous assessment blogs and the way that I speak. The reason for doing this is that I believe it is important for there to be clarification in why so many neurodiverse students seek written modes of communication over oral modes. But when you take into consideration that I am not considered a ‘non-verbal person’ but experience these difficulties and mismatches in communication styles, the need for methodologies in research that accommodate those who are strictly non-verbal becomes clear. Any system – including academics – based on verbal communication alone will seriously exclude and restrict those who communicate in other non-verbal languages.

In terms of bringing this back to more-than-human research methods, I think it seems fluidly logical (at least in my mind) that when trying to make sense of lives that are fundamentally non-verbal (plants, animals, landscapes, soil, rocks, mountains, oceans, rivers, climate, etc) there would be a clear benefit to engaging non-verbal researchers/consultants to contribute their alternative perspectives to the pool of knowledge. My essay is going to introduce a few methods that could potentially be used to achieve this, but from my research so far I just want to say – we are doing research in some exciting times, methodologically speaking! There are some cool technologies and ‘out of the box’ thinking going on, and I for one am excited about where this might go!

So, a couple of little additions that didn’t make it onto the video – another issue with spoken word for me, I tend to forget VERY easily what it is that I am trying to say.

1. I have practised very hard to be able to achieve the level of expression you hear in this video! When I am relaxed and speaking, I have been told that I either sound bored or angry most of the time, and I am generally only this expressive when I am either excited or mindfully forcing myself to be.

2. Synaesthesia in presentations – what I left out here was that I feel very disembodied from my voice when presenting, and it is actually the sound of my voice that causes intense tactile and audio-visual synaesthesia. My voice does not feel like it comes from within me and out, but rather from an external source and rapidly towards me in an overwhelming, painful way. It is actually a physically painful experience.

3. Windy audio – I can’t apologise for the wind, but I was just saying something about how most people really love presentation-based assignments because they are an ‘easy’ task. This is not the case for me.

Okay – enjoy the main blog content in my video:

Blended Senses: my experience of synaesthesia

Synaesthesia – the blending of the senses – is a really cool form of neurodiversity. It involves having cross-wired senses, so that you might experience sound visually or taste colours, for example. The sensory combinations are quite limitless, and most are poorly researched, and difficult to validate because the synaesthetic experience of each individual is not necessarily the same. For example, two synesthetes might disagree about what colour the same sound is!

It’s taken a while, but I have worked out that I have at least 3 types of synaesthesia and possibly some others that have not been well categorised yet, but for which there are numerous self-reports available online. Two important things:

  1. I am primarily an associator synesthete, meaning that I experience these things very vividly and intensely within my body and mind’s eye. If I close my eyes, I can visually see the synaesthetic experience clearly. In my synaesthesia experiences that involve physical sensations, however, I often am a projector. This means that I physically experience tactile sensations as if they were really, tangibly occurring.
  2. My synaesthesia is consistent – the experience doesn’t change over time. However, not all stimuli provoke a synaesthetic experience. In other words, listening to some music can provoke intense visual experiences, while other songs are purely auditory with no synaesthesia whatsoever.

A synaesthete’s artistic impression of how music looks to her. This is remarkably similar to how I experience sound, although with much more light involved. But how do you paint light, really?

So, the synaesthesia that I experience are as follows:

  1. Chromasthesia – Sound to Colour (Associator)

Individual notes elicit very little synaesthetic experience, it tends to be a response to tone of sound rather than pitch. For example, certain instruments consistently have particular colours irrespective of the notes being played. Listening to music can be an overwhelming experience, because combination sounds that occur in songs cause me to experience multidirectional synaesthesia. That is, I have both a visual and tactile experience at the same time. Visually, it is like looking at a nebula sometimes, with colour and lights occurring in different opacities and boldness. Voices often occur in ribbons, with female voices being various shades and combinations of pink and golden yellow, and male voices being bold oranges, yellows and whites. To this day, Billy Corgan and David Draiman have THE MOST synaesthetically pleasing voices I have ever personally experienced. Billy Corgan’s voice produces ribbons and sharp lines of beige, peach and cream colours, depending on how he uses his vocal tone. David Draiman’s voice is like light being turned up and down in brightness, and is the most glorious shades of gold I have ever seen.

This song gives me an intense chromasthesia experience, and is one of the most vibrant and diverse experiences of David Draiman’s voice…imagine many shades of golden light in ribbons that are turned up and down in brightness as his voice dynamics change throughout the song. The musical aspects of this song are very bold, dark walls of purple with orange lights dotting it…imagine orange stars in a purple nebula in space.

Other, non-musical sounds – particular nature sounds – cause synaesthetic responses also. The call of the Australian raven is like the blue-black iridescent sheen of its plumage forming three partial funnel-shaped walls with each of the three ‘caw’ sounds made by the bird in its typical call. The walls are three different heights correlating to the descending pitches of each ‘caw’ and join up in sequence to create a full funnel-shape.

  1. Auditory-Tactile – Sound to Sensation (Associator and Projector)

This is an extremely overwhelming, and sometimes disorienting synaesthetic experience for me. It often results in serious sensory overload when sounds result in negative tactile experience, particularly because they are physically projected onto and experienced by my body. But positive tactile experience in response to auditory stimuli are also incredibly intoxicating at times. Some examples:

NEGATIVE:

  • ‘Buzzing’ sounds associated with mass human conversation (like in a food court), hums from fluorescent lights or idling engines, banging or pulsing sounds (hammers, dance music, tapping) all come with an array of unpleasant tactile sensations that range from dizziness, falling sensations, spinning sensations, tapping against my skin sensations, and ‘prickling’ sensations. Interestingly, many of these co-occur with negative chromasthesia sensations, particular bright, piercing light. While I don’t actually see the light, my eyes physically sting and hurt as if someone was shining a torch into my eyes.

POSITIVE:

  • Some music is pure ecstasy to listen to, particularly when the auditory stimulus provokes both tactile and visual synaesthetic responses in combination. In many cases, I actually have major shifts in my sense of proprioception – that is, the sense of where all my body parts are and how they are contained…or in my case, not contained. Music actually makes me feel that I am no longer inside a physical body sometimes, and that my parts are floating in space. If I actually move while this is happening, say for example, spinning in a circle, I feel like my body parts are flying off into space as I turn! It is actually a really euphoric, transcendent experience and makes me wonder if this is what people experience on drugs!

To this day, this song continues to have one of the strongest combination chromasthesia and auditory-tactile responses in me. It is difficult to describe in words…but I will try. Basically, I feel like I float up and out, my body explodes out of it’s container and into space. That space visually looks like a nebula of pinks, purples, turquoises and bright white, orange and yellow lights dotted throughout like stars.

  1. Ordinal Linguistic Personification (Associator)

Days of the week and shapes have colour and gender. Every word in the English language has gender to me. For example:

  • MONDAY/Triangle the shape = Female, however the word ‘triangle’ in totality is male.
  • TUESDAY = Male.
  • WEDNESDAY/Rectangle the shape = Female, however the word ‘rectangle’ in totality is male.
  • THURSDAY/Square (both green, but different shades) = Male.
  • FRIDAY/Circle = Male.
  • SATURDAY (actually colourless, kind of like being ‘clear’) = Female.
  • SUNDAY = Unisex, with male dominance.

Numbers and letters have distinct gender. For example:

  • 1 = male
  • 2 = female
  • 3= male
  • 4 = male
  • 5 = male
  • 6 = female
  • 7 = male
  • 8 = male
  • 9 = female
  • 10 = male

a/d/k/m/n/r/s/v/w/y/z are all female.

b/c/e/g/h/i/j/l/o/q/t/u/x are all male.

f/p are unisex, with f having male dominance and p having female dominance.

Some letters and numbers have personality or relationships…for example, the letters R and S have a rivalry based on a shared affinity for the letter T, where R is jealous that S sits beside T. Some letters have unpleasant personalities, such as M, while others are extremely friendly and welcoming, such as B, H and I. The letters A, K and Z are strongly associated with strong, feminine personalities, with Z having greater wisdom compared to A and K.

Non-sequential subjects also have gender. For example, trees and plants have gender that is not species-specific. From tree to tree and shrub to shrub, I can generally tell you what gender each individual is. Certain animals are also strongly gendered…for instance, cats, ducks and whales are female, dogs, horses and dolphins are male.

Some of my plant photographs. The two trees are female, while the gum-nuts, fungi, and Cape daisy are all male.

  1. Poorly described forms of synaesthesia that I experience:
  • Personality to Colour (Associator)

People and their personalities have colour/s. This is usually most vibrant based on first and acquaintance level perceptions of people. The more I get to know people, the less vibrant and more varied their colours become. For example, first impressions are always a single, bright colour. My family members, on the other hand, are multiple colours that are mostly dull with aspects of bright colour and light.

  • Smell to Colour/Sensation (Associator/Projector)

Almost all smells have intricate combinations of colour. Biological smells have the most vivid and intense colours and also include mild tactile projections, such as tingling sensations. Weirdly, I enjoy a lot of disgusting smells because of their colour and tactile sensation, and I seem to have a heightened sense of smell (which I don’t think I actually do) because of the synaesthetic associations. Animal smells, plant smells, water smells, flower smells, bodily waste (urine, dung, menstral blood, etc) smells, and raw or decaying meat smells are extremely intense, overwhelming and often pleasurable experiences for me…something that kind of freaks other people out sometimes.

  • Visual-Tactile – Sight to Sensation (Associator and Projector)

Intensely visual stimuli (particularly light) cause similar tactile responses to my auditory-tactile synaesthesia. All of my life, I have referred to this as ‘my enchantments’. Things like light on water (rain drops, flowing streams), the orange street lights at night, fairy lights (like on a Christmas tree), sunlight on clouds, glowing embers and firelight, and torchlight on fog all elicit strong, physically experienced tactile sensations. This occurs in combination with a kind of pre-occupation that looks like ‘mindless staring into space’ at the visual stimuli that occurs as part of my Asperger’s experience. This combination of synaesthesia and Aspie experience is sometimes difficult for me to disentangle, because as far as I am aware they have co-occurred my whole life and are one and the same experience. I only know that there are two different contributions because of my Aspie experience also manifesting without synaesthesia in other circumstances (eg – pattern-based ‘enchantments’).

Photographic examples of my ‘enchantments’. As you can see, light features heavily. All of these visual stimuli result in disruptions to my sense of proprioception where I no longer feel embodied, but rather moving about in space., usually in relation to what I am seeing. For instance, the rain-fall image – when it was being experienced in real time – gave me the sense of falling down and forward simultaneously. Fire-light often makes me feel compelled to sway in all directions, not unlike the movement of flames. The sunset sky gave me the sense of floating upward and expanding out of physical containment and into the sky itself. Some skies also make me feel very ‘wrapped up’ or enveloped by their colour and light. Water always makes me feel like I am moving in various ways, and I also sometimes experience the feeling of water flowing over my skin…which is very strange, because it lacks wetness, only movement sensation. The tree with the sunlight behind it is visually disorienting to me, the light moves forward towards me, and I feel myself move forward towards the light, but the tree remains still.

I wanted to share my synaesthesia experiences because I think they – along with the myriad of experiences of other synesthetes – have the potential to contribute something to phenomenological studies of neurodiversity and the sensuous world – both human and more-than-human. More synesthetes should endeavour to find ways to express their blended sensory experiences as best they can, because they are worth sharing! They highlight a sensory world that I believe a lot of other-than-human animals experience, for example, and may give us insights into other forms of intelligence and consciousness that is based on sensory engagement rather than verbal and ‘rational’ thought/communication. The tricky part, though, is finding ways to express synaesthetic experiences accurately, because no amount of verbal description really captures the experience completely. But this could be another challenge for us human animals to demonstrate our particular gifts in creativity, innovation and ingenuity when it comes to problem solving!