My Neurodivergent Passport

This is a passport I have made for neurodivergent individuals to communicate their abilities, needs, and strengths. It also let’s you show your own sensory and communication profiles. It is a really simple tool and you can get it for free in the pdf below (if you really like it, feel free to buy me a coffee). If you want a printed version, you will also be able to buy a copy really soon (update to come on this)! If you want to use this tool, but need it reformatted in any way, feel free to send me a message and I will happily help you out.

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Neurodiversity 101 – Neurodevelopmental Disorders

This is an infographic I made for a workshop recently outlining some a brief overview of neurodevelopmental disorders (NDDs) currently recognised in the clinical literature. These are short definitions of NDDs and there is much more nuance to each one, but it is a good and simple place to start with each term.

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Intellectual Developmental Disorder (IDD): An intellectual disability is a condition that affects a person’s mental abilities, such as how they think, learn, and solve problems, and can cause difficulties with everyday tasks and meeting societal expectations for independence.

Communication Disorders: Communication disorders are conditions that affect a person’s ability to use language, speech, and social communication skills. These disorders can include problems with language, speech sounds, and the way a person communicates with others. They can also include difficulties with the fluency and rhythm of speech, such as stuttering.

Autism Spectrum Disorder (ASD): Autism is a condition that affects how a person communicates and interacts with others. It is characterised by difficulties and differences in social communication and interaction, and by restricted and repetitive behaviours and interests. The range of support needs varies significantly between autistic individuals, and can be impacted on by co-occurring conditions.

Attention Deficit Hyperactivity Disorder (ADHD): ADHD is a condition that affects a person’s ability to pay attention, be organised, and control their impulses. People with ADHD may have trouble staying focused, listening, or keeping track of things. They may also be very active or have trouble sitting still and may interrupt others or act impulsively. It is important to note that the hyperactivity component can be internalised and people with ADHD may feel very overwhelmed internally without showing this externally.

Motor Disorders: Motor disorders are conditions that affect a person’s movement and control of their muscles. This includes problems with coordinating movements, repetitive behaviours, and tics. For example, Developmental Co-ordination Disorder impacts upon an individual’s ability to plan and process information, turn thoughts into action, and navigate fine and gross motor skills, which means they may seem clumsy. Tic disorders includes Tourette’s disorder, which is when a person has multiple motor and vocal tics.

Specific Learning Disorders (SpLDs): SpLDs refers to conditions like dyslexia and dyscalculia. It is a condition that impacts upon how an individual learns certain academic skills, such as reading, writing, and mathematics. It typically appears during the school years and is characterised by persistent difficulties with these skills that are not due to intellectual disability or other conditions.

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Neurodiversity 101 – Terms

This is an infographic I made for a workshop recently outlining some key neurodiversity-related terms. These are short definitions and there is much more nuance to each one, but it is a good and simple place to start with each term 😊

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Neurodiversity: the understanding that there is a wide range of natural variation in human brains and behaviours.

Neurotypical: someone with a brain that develops and functions the way “we” typically expect, that is to say without a developmental disorder, like autism or dyslexia. Some people will also use this term to refer to someone without a mental illness too. Generally, it is just someone who doesn’t have a neurodevelopmental disorder and doesn’t experience mental illness. It is ultimately a term that people use if they do not relate to being neurodivergent.

Neurodivergent & Neurodivergence: referring to someone whose brain doesn’t develop and function in the way we “typically” expect.

Neurodevelopmental Disorders: a group of conditions with specific criteria which we use to categorise differences in the development of the brain and nervous systems, such as ADHD.

Neuronormativity: neuronormativity refers to the centring of social, political, personal, cultural, linguistic, and communicative norm and ways of being and engaging in the world which privilege neurotypical modes of being over others; for example, systematically producing a narrative that non-autistic individuals are superior to autistic individuals, that autistic lives are of less value.

Neurominority: neurominority refers to a group of people who share a common form of neurodivergence, such as autism, who face systemic barriers in terms of accessibility and discrimination due to implicit and explicit processes of neuronormativity.

Disability: a physical or mental condition which limits a person’s ability to perform certain tasks or skills. In the UK, in a legal sense, neurodivergent conditions are typically considered a disability under the 2010 Equality Act, and this is important to note as this act provides legal protection in work, education, and in other services and allows for access to specialist support and services.

Autistic vs. Allistic: allistic simply refers to someone who is not autistic. It is important to note that an allistic may be neurodivergent in other ways, for example, having ADHD, but they will not be autistic.

Bonus! Co-morbidity / Co-occurrence: this simply refers to conditions and disabilities which are commonly seen with another; for example, autism commonly co-occurs with ADHD. Having co-occurring neurodevelopmental disorders is the norm rather than the exception.

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PhD Study: Neurodivergence & Grief

Hello, my name is Ally, I am a PhD student researching neurodivergent experiences of grief. I also am autistic and have ADHD too. I will be looking at publicly available posts on neurodivergent experiences of grief as part of a study I am currently running and wanted to let you know of this, as if you have any content you do not want me to look at, just let me know in a comment below, by emailing me, or using an opt out form (linked here). If you want any more information, feel free to contact me or to check out the document explaining this study in more detail (linked here and viewable below).

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Nothingness & Forgiveness

From a concussion to start my year and the dizzying dreamlike states of nothingness I entered into to the same nothing-like states of memory I find in relation to a head injury from years ago, I discuss how I navigate this in terms of post-traumatic growth whilst also suggesting how we ought to consider this growth in the ways we learn to forgive the other too.

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Towards the end of December I went into a haze, and there is an odd thing to going into the new year with this experience of nothingness. Alan Watts, in speaking of the beauty of nothingness, would say, “the most real state is the state of nothing” [1] because it is what we came from, it is where we are heading, and it is everything in between, from the space in between spaces of atoms to the blankness when we close our eyes. And yes, describing nothing as this immense and profound understanding of reality is beautiful and fascinating, but when I was wading through that haze of nothingness, nothing felt further from reality: for at least two weeks even the air seemed unreal.

This dizzying descent into a dreamlike nothingness to end my December and begin the new year wasn’t from some intense spiritual realisation of Buddhist philosophy like Watts’ poetic description of the beauty of nothingness, it was harsh, unkind, and somewhat trivial in the sense it could just as easily occur to anyone on any day.

But what caused this nothingness? What can produce that which is simply nothing? It was just a bop, and that was all there was to it. I just simply received a rather nasty blow to the head which resulted in a concussion.

It wasn’t from some wild Christmas party or an exciting Hogmanay adventure, but from the mundanity of life and the clumsiness of my odd and unknown proprioception which seems to fall in on itself, as my speeding wee oblivious noggin collided with a doorframe which I could have sworn was not there a moment ago whilst I was trying to tidy things up. I would go on to reference the doorframe as goalposts for a while following the incident for some reason, I suppose it makes me seem more adventurous and question less how such mundane incidents of tidying up can be so fragile. But doorframe or goalposts, I passed through them into nothingness.

I don’t remember much from that day, the whole week seems like it didn’t happen in my life, as though I must have read about some character in a different time and different place. But it was me. It is the inverse of a phenomena I sometimes experience where, courtesy of my hyperphantasia which makes reading an extremely visual experience for me, I sometimes recall a memory to then realise it was actually from a book and not my life; I find it funny how I feel as though the sparsity of memories in those weeks makes my life seem as if it were from a storybook, as though that nothing does not belong to me, as if one could possess a memory as something more than the nothingness of thoughts through time in the first place.

Another memory like that comes with another head injury, but I am not sure if it were the trauma or the trauma that caused it: there is a differentiation here as there was the physical trauma and the psychological trauma associated with this. I was assaulted whilst walking with my friend in Dublin. That whole day has been transformed into a storybook of dreamlike nothingness: there is greater clarity to it, but the memory is all remade up and it is as if I read about it in a book now. This disconnect was not just a production of time, but was present from the moment it happened, and, in that sense, I am glad there were CCTV and eyewitness accounts; although I have a feeling those eye witness accounts, like all, will be subject to the same degrees of personalisation and differentiations from whatever reality may be than my own memory of the event, but the same themes will have been there. I forgive the person who did it, I understand how situationally things occurred even though it was an awful thing to do, I still forgive them. He was a young lad with a lack of support, there were mental health components, and he was out with friends with a particular culture of masculinity whilst intoxicated on various substances, and these are just the things I am aware of: there was probably a lot going on and I hope things are better for him now. I hope he has thought over that night too, probably detached in some storybook fashion like me, and I hope he can forgive himself for doing what he did because he deserves that and just like me, he deserves to be able to grow past this, heal, and learn to be better than the nothingness of the moment which I sometimes find myself pulled back into as something more than the dreamlike state it has become.

That whole day might be filled with some dreamlike nothingness, the kind that happens when you hit your head too hard or someone else goes to do it for you, but there is no nothingness to the possibilities for growth beyond that day. In psychology there is this term which I feel, in our fascination with the darker side of things, often gets overlooked in the popular sphere: post-traumatic growth. However, I think one thing that often goes amiss here, when trauma and growth from that is focused in solely on victims (as much as I dislike that word, I don’t know what else to use here) rather than those with a history of offending, is the sense of forgiveness we can not only develop for the other but the hope for growth in them too. I think we forget through processes of dehumanisation that even the perceptually most awful of people who have done the most awful of things deserve the chance for forgiveness and the chance for growth, and that they can grow beyond a traumatic event even if they were the perpetrator, they can become better beyond this. No one is undeserving of humanity, and in that sense, no one is undeserving of forgiveness, even if it takes us a lifetime to get there. And here in lies my issue with cancel culture, with life sentences, with heaven and hell, and executions, they impose a particular set of morals at a particular moment of time with the presupposition that the individual has the inability to change, when, in reality, both our morals change through time, and we change as individuals as we grow. So, as I start a new year, in a new form of nothingness as a completely different individual than I was when I was attacked those years ago in Dublin in that older set of nothingness, I am reminded of our ability to grow, our ability to heal, and, most importantly, our ability to forgive.

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To the young lad in Dublin, I hope life is treating you well and I hope you are growing more and more each day.

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Live Long & Prosper

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[1] Watts, A. (2013). Alan Watts On Nothingness – FULL [Video]. Retrieved 11 February 2022, from https://www.youtube.com/watch?v=pd_uqpH4bag&ab_channel=AdamClark

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Sunrise

Using the poem Sunrise by Mary Oliver, I explore my thoughts around the beauty, hope, and sense of constancy offered by sunrises. I consider my own spirituality in the indescribable joy I get from a sunrise and how it is a phenomenon that does not discriminate. I tie in ideas from one of my favourite books, Oscar et la Dame Rose by Éric-Emmanuel Schmitt, and other sources to look at the almost divine nature of both the sun rising and experiencing it do so. Lastly, I end with a poem of my own.

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I have been reading a lot of Mary Oliver recently, courtesy of my girlfriend, and her words have been healing. They seem as welcoming and reassuring as the hands which lent me the book in which I find myself completely and utterly lost in wonder. I amble through verses of Oliver’s lively fascination with the same magic we all may find in this world, in its simplest moments. There is this simultaneously grounded yet unreal quality to Oliver’s truths, as the divine seems to occupy the most mundane moments of what it means to be human, those panoramic visions of a god we seem to find in the simplest of moments: the golden rays of His majesty projected across the sandstone brickwork of our simple craft, our world aglow and afire by the warmth of Her light. We find magic, we find purpose and joy in the simplest of universal truths: that the sun rises, that it warms us, that its light holds us in precious and still moments of joy and company. That no matter how bleak and hopeless and dark each night may seem, the sun will never stop trying, she will always be there to greet us in the morning. In the poem Sunrise, Oliver writes [1]:

this morning,
climbing the familiar hills
in the familiar
fabric of dawn, I thought

of China,
of India
and Europe, and I thought
how the sun

blazes
for everyone just
so joyfully
as it rises

And, for me, this goes beyond the notion of simply existing under the same sun. It is more than this, it has to be as we, well, we are more than this. We are more than occupants of a planet, we are more than neighbours, we are more than one people or peoples, and there is so much more to it all than we simply may all know what it is to feel the sun rise. There is this understanding of a joy that does not discriminate, of a god, whoever He, or She, or They may be, that transcends the artificial realities we make for ourselves. If we went back and did it all again with new maps and new countries, the sun would still rise just the same each day, She has been a constant for each and every one of us, for the wealthy, for the poor, for the old, the young, the abled, disabled, black, and white, She still rises. She always will. It is almost as if what it means to be human, deep deep down, far far in, knows no geography, no race, no status, nothing we made ourselves, it simply knows being, as we wake to the heartbeat of a universe that greets us each day. If there is to be a god, they do not know our borders, I doubt they even understand them, despite how we may employ them to maintain our gods. Sunrise continues:

under the lashes
of my own eyes, and I thought
I am so many!
What is my name?

What is the name
of the deep breath I would take
over and over
for all of us? Call it

whatever you want, it is
happiness, it is another one
of the ways to enter
fire.

Yet, it is more than simply an indiscriminate sunrise. It is more than this borderless pulse of space and time which decentres us in its own gravity of grace each day. It is more than just the light and heat which wakens us. There is a universal magic to it all, a gentleness known for all of us. The qualia of a sunrise I suppose, in that what I may know and understand as the subjective experience of this formation of rising heat and light is somehow different from and never wholly explainable to anybody else, because they can never experience what a sunrise is like for me. Yet, it is more, as there are these qualia known and unknown to myself, as each sunrise moves me in a different way. However, until recently, more often than not I would miss it. I think many of us often miss these constants because they are so present and we are, well, we are not. I suppose there is an irony to the captivating worlds of distraction we have to hand which make us miss the simplest of beauties which occur every day. And yet if we stop. If we breathe. For just a moment, that “name” Oliver is searching for, it is there.

I have recently been so gently reminded of the softness of a sunrise and the stillness and happiness one can find in a single seemingly insignificant moment of everyday life whilst rereading Oscar et la Dame Rose by Éric-Emmanuel Schmitt, as I do every year in the run up to Christmas. It is probably the only book I will ever recommend that one needs to read twice: the first time to grieve and the second to understand. The first time I read it, I knew what I was getting myself in for and I still found it terribly depressing nonetheless, it is about a young boy coming to terms with the fact he is dying from cancer after all; however, the second time I read it, and every time since, it has been one of the most hopeful and beautiful books I have ever known. The young boy, Oscar, starts to treat each day as if it were worth ten years so he may live what he sees as a complete life and the book is structured as letters to God on each of these days. Oscar does not believe in God to begin with, however, towards the end of the book there is one particular sunrise where Oscar wakes to that “name” that Mary Oliver is searching for in her poem:

“And there it was, I could sense that you had come. It was the morning. I was alone on the Earth. It was too early for the birds, even they were still asleep, as was the night nurse, Madame Ducru, who was having a wee nap, but you, you were busy composing dawn. Now, you did have some trouble, but you insisted upon the sunrise. The sky began to pale. You blew whites and greys and blues across the sky to fend off the night; you brought the world back to life. You didn’t stop. It was in that moment that I understood the difference between you and us: you are the untirable guy! The one who never gets weary. Always busy working. Like just like that, here is the day! And there is the night! And the spring! And winter! And Peggy-Blue! And me, Oscar! And Mamie-Rose! You must be so incredibly healthy to be always working so hard!

In that moment, I understood that you were there. That you were telling me your secret: to look at each day on Earth as if it were the first time you were experiencing it all.

So, I followed your advice, and I am putting it into practice. The first time. I contemplated the light, the colours, the trees, the birds, the animals. I felt the air pass through my nose, and I breathed it in. I listened to the voices in the corridor which rose like arches in a cathedral. I found myself living. I got chills from the pure joy of it all. The happiness of existence.” [2][N.B. this is my own translation from the original French]

I suppose it is more than just knowing that the birds sing and the sun rises, it is knowing that they will do so again. That the sun doesn’t tire on us, She never gives up on us. I am reminded here of that poem attributed to Hafez, but really a misrepresentation by Daniel Ladinsky, The Sun Never Says [3], which is beautiful despite its inauthentic and muddled origins:

Even
After
All this time
The sun never says to the earth,

“You owe
Me.”

Look
What happens
With a love like that,
It lights the
Whole
Sky.

It is knowing the Sun as this constant, that She will never not keep trying. That She will never not be so beautiful. That one cannot wake to the warmth and the light of Her glow and, upon looking at how She brings the world back to life, upon really being present with Her, not be pulled by Her gravity and motion in some compelling comfort and stillness which we will simply never have the words to describe.  That She will never not be that “name”, that happiness, that unbounded stillness of godly magic we experience in the simultaneously simplest and most complex universal moments. It is more than just some international god, in the way Mary Oliver reminds us that the Sun will still rise for us no matter where or who we are. It is more than just some outwardly experience, as Oscar reminds us in his mindfulness as he breathes in the stillness of the morning air. It is more than this constant, as Ladinsky reminds us in the untiring love She brings each day. It is each and every one of us in that moment too. As She greets us, so too do we greet Her back. We embody that stillness, and the knowing hope She will rise again. In that moment, in the rising heat and light we know the magic of a sunrise. We come to know that if there is to be a god, whoever They may be, They are not static, They are constantly at work and They are something one is to experience. All the Suns and the Stars, and the Atoms and Molecules, and all the motions and spaces we make in between, if there is to be a god, They are done and undone here. Something that is unbounded, experienced, practiced, embodied. We find God in the Sun rising, but we also find God in watching it do so, in looking at the world each day as though it were the first time we were here insofar as we may see the magic in each moment. There is beauty in so many things, there is this magic in the everyday, those heartbeats to the universe one ought to dance to. In that sense, and this is not a new concept, but I do believe God is more suited to being a verb. Although, God, at least our understandings of a god, is probably more suited to something beyond our language, but for now words are the best thing I have and I say God as a verb much like R. Buckminster Fuller’s [4] understanding of God being a verb insofar as:

“Here is God’s purpose – For God, to me, it seems, is a verb not a noun, proper or improper; is the articulation not the art, objective or subjective; is loving, not the abstraction “love” commanded or entreated; is knowledge dynamic, not legislative code, not proclamation law, not academic dogma, nor ecclesiastic cannon. Yes, God is a verb, the most active, connoting the vast harmonic reordering of the universe from unleashed chaos of energy. And there is born unheralded a great natural peace, not out of exclusive pseudo-static security but out of including, redefining, dynamic balancing. Naught is lost. Only the false and nonexistent are dispelled.”

But for now, whether or not I believe in a god, I do have this sense of spirituality beyond myself; it could be everything and it could be nothing, but it is something and the Sun will still rise each day and I will always be grateful to see Her. She will set and Venus will dance in her absence as the Moon awakens in great mirrored light to inky night skies which will never not be captivating, but regardless of how lost I become in the night to wonder or fear, I know She will return in the morning to ground me once again, to make it all okay. She is a constant and I am grateful to be able to say “good morning” each day.

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I have borrowed a lot from others today as it is hard to find the words to write on such a thing, and yet here I am weaving and crafting pieces together to try to make sense of that “name”. However, as I have been reading much Mary Oliver, I feel I ought to share a poem on this. So, I will end today with a poem of my own, Summer Breaths:

And suddenly it was okay to breathe.
Though unbeknownst to me,
As my lungs still clung desperately to the storm of their last breath.
But suddenly,
As if by seas parting
And tides shifting
This great world of ours kept spinning
And Spring returned with his calm joys,
He always did… He always will…
As Winter slowly crept back into the forests for yet another year,
As my legs started to shake,
As my lungs finally caved
Heaving out yet another storm
Clearing skies
Darkness was unknown for miles around me,
And there was Summer,
Appearing once again.
How beautiful she always looks
How necessary she has come to be,
The glowing yellow of her months
A halo to my years.
And suddenly Summer was here again
And she needn’t say what her being implied,
What her warmth and light told me each day.
Summer came and I simply knew,

It was finally okay to breathe.

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Live Long & Prosper

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[1] Oliver, M. (1992). New and Selected Poems: Volume 1. Beacon Press.

[2] Schmitt, É. (2006). Oscar et la Dame Rose. Magnard.

[3] Ladinsky, D. (1999). The Gift. Penguin Compass.

[4] Fuller, R. (1971). No more secondhand God and other writings. Doubleday.

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Capacity to Grieve

Building on my own self-reflection upon what grief means to me as an autistic individual, I explore my personal thoughts around the history of academic and clinical understandings of experiences of grief in neurodiverse populations and how it was considered in terms of a certain capacity to grieve based off of neurotypical assumptions as to how one should grieve.

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One of the most troubling areas I have found personally in the world of categorical assumptions has been in how one ought to be, act, and react in loss. I have been rather unfortunate in terms of knowing so much loss in so few years of life, and this is another area where I continually encounter neuronormative assumptions of how people should be, because in all my loss, I still have not learnt how to perform a neurotypical grief. And how could I? How could I bring myself to force another way of being in times when the self I am collapses in the loss of the other’s gravity and motion? In grief I become too much or too little and even the latter has come to need significant intervention as all my action, all my motion, seems to freeze with the absence of the other, as I simply shutdown. My motion, so dispersed in the world, becomes lost in the loss of the other, and it stops with them.  

When someone dies, when profound grief strikes, time seems to evaporate, leaving one in this motionless moment outside of time altogether. It is as if time has carved a pocket for the grief stricken outside of this reality, in another space in which the flotsam and jetsam of the tragedy surface and fall with all their meaning and impact, but time, that unkind friend, protects us from their motion. It is as if entering the eye of a storm for that one moment in loss before time once more decentres you in the gravity of its motion and the stillness of the grief collapses in on itself under the unbearable weight of the loss.

Grief really is an odd thing. It is a very social thing, both in losing the other and all the other others who seem to appear following the death and in how the other remains along your side in some shape or form even in their death through a continuing bond of sorts. It seems that every time a wave of grief hits, I re-emerge reshaped regardless of how long it has been since the other died; it is odd the amount of influence the gravity of these relationships still has to alter the course of our trajectory and pull on our motion even when their own material motion has stopped in death. So, upon resurfacing, each time the grief shifts a little further to an some unrecognisable weight I burden, like the form of Sisyphus’ boulder changing each time, unbeknownst to him, until he is just walking up the hill with a clear path ahead, but the weight is still there and it always will be, it is just the form has altered; just as loss produced emptiness, the grief this lends, which at one point seems like it is everything and everywhere, eventually settles into that empty form, at this point I may no longer recognise it as grief, I seldom do, but the weight is still there. It might be small in just that off feeling one gets as if something somewhere is wholly amiss or that unknown dread which certain months now bring. For example, there is a particular misplaced pain that hits at the beginning of November. Or perhaps this empty weight takes the form of a period of seemingly random low mood far past the event itself, but grief, when and where it collapses into that empty space, always seems to persist.

Grief may persist in such a way that it becomes indiscernible as grief itself, at least, in any way in which I know it, but it is still grief, nonetheless. In a simple figurative sense, as I find weather always helpful in describing how I feel: one could say that although the flood of grief will flow and evaporate, the clouds formed in that process will remain and they will follow always, but, just like any weather system, time will produce change.

One of the pieces of ableist rhetoric which has often been employed to discount non-neuronormative experiences of grief as improper and invalid experiences of grief is the term “capacity”, that, for example, autistic people lack the “capacity to grieve”. This notion is problematic in two parts: firstly, that it implies a binary nature to grief, where one is either capable or incapable of grief, and secondly, by that binary distinction, that there is a proper way to grieve. In terms of the binary nature being applied to grief here, by using terms centred on capacity, one starts saying that either one has the capacity to grieve, or one does not: in other words, you either grieve or you do not. This type of dichotomous opposition is not well placed in looking at grief as grief is not a mathematical process, it is more often than not devoid of logic, it is a messy non-linear process, and our capacity for grief, both as neurotypicals and neurodiverse people, can change not only over  protracted courses of acknowledging, processing, and integrating the grief, but day-to-day or even minute-to-minute; we may find ourselves held firmly under the dark clouds of grief’s weather systems in one instance, to only find ourselves devoid of any capacity to feel, process, or even acknowledge the loss in the next instance. By framing perceived capacity to grieve as a reason to discount other’s experiences of grief, researchers, clinicians, and those around autistic individuals are not only at a loss in their own humanity in terms of being open to other ways of experiencing the world and conceptualising social processes, but also forget their humanity too in terms of its fallibility, its own limited and restricted capacities which are forgotten in looking into a mirror of people dealing with the same things, just perceiving and reacting in different ways. Being the satellites orbiting around us, they often forget we are the same creatures on the same planet.

It is actually rather startling to see that, within academic and clinical understandings, it was not until fairly recently that we came to acknowledge that autistic people do in fact grieve, in the same way there is still misunderstanding over our capacity to experience friendship(s) and other social phenomena. We do indeed have this capacity to do so, to grieve, to understand and experience the depths and intricacies of social processes and relationships beyond the material in loss. That we can be left at a loss of our own in the loss of the other. That we are not completely soulless: we have the capacity to grieve, and we hurt, we ache, we cry, we don’t cry, we are shocked, we aren’t shocked, we are at a loss, we do not know how to cope, we cope, we try to navigate the unbearable and sometimes we find a way to bear it and sometimes we get lost in it. We are human just like you. We experience the same beauties and tragedies of life, we just might do it in a different way, but they are most certainly not lesser or absent. We have these neurodiverse social worlds and understandings which don’t always quite match up with neurotypical social processes, and it is okay that our conceptualisations and ways of engaging in the world are different. However, what is not okay is forcing us to change who we are where adaption between us is not possible. Neurodiversity is more than understanding, it is about reframing neurotypical social conceptions, reframing their inherent typicality, and encouraging a decentring of neurocultures and neurotypes. This ultimately fosters neurodiversity in the broadest of sense in which we are not obliged to try to meet a certain form of neuropalatability and may just be understood simply as ourselves.

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Live Long & Prosper

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A Grief Observed

Using C. S. Lewis’ A Grief Observed as a starting point, I write on the identity we find in others and how one comes to grieve this loss of sense of self when they lose the other. I discuss how we find ourselves done and undone by others in this sense, in that community may offer us a sense of wholeness but it can also decentre us in loss. Although this decentred understanding of ourselves is hopeful, even if it is hard in times of loss; we are made and remade, done and undone by both ourselves and the other and we continue to grow.

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“If H. ‘is not’, then she never was. I mistook a cloud of atoms for a person. There aren’t, and never were, any people. Death only reveals the vacuity that was always there. What we call the living are simply those who have not yet been unmasked. All equally bankrupt, but some not yet declared.” C. S. Lewis, A Grief Observed [1]

I do not know if it is because Lewis is ultimately questioning God’s fairness in grief or if there is an irony in me in particular finding such solace in a line from a very Christian author on a topic of this nature, but I love this book and I love this line in particular. This line reminds me of that popularised Rumi quote where he says that we are, “the universe in ecstatic motion” [2], telling us not to act so small for this very reasoning. I really like this thought that we are all part of this great cosmic dance, and of course I have to call it, existence that is, a dance when discussing Sufi mystics. It is such a wonderful notion and it simultaneously produces so much meaning and so much insignificance.

As much as I think I believe in nothing, I do get a lot of solace from spiritual literature like this. This idea of existence as a dance, an unravelling, a great doing and undoing, as everything and nothing all at once makes me think, well, if we are everything, if we are the universe in ecstatic motion then is there a point to all of this? If we are so expansive and so reduced, so present and so absent, is there any sense to it all? My brain comes to Alan Watts here, an interesting fellow, who said, upon realising a messy meaningless to it all that, “you only go on, if the game is worth the gamble” [3]. His idea is that, well it might all be nothing, but it might also be everything, so maybe it is best to hedge one’s bets, and to be honest, if that is all one has to go on, it is a pretty safe choice to carry on. One of my favourite nuggets of wisdom which Watts ever gave was this:

“The meaning of life is just to be alive. It is so plain and so obvious and so simple. And yet, everybody rushes around in a great panic as if it were necessary to achieve something beyond themselves.” [4]

I really like that last part, “as if it were necessary to achieve something beyond themselves”, but when one comes to that in a time of grief, at a time when a part of oneself feels gone insofar as the other was not fully where they were and the self not fully where I was, we were in the crossing between one another; we decentred each other in such a way that I was a part of the other and the other a part of me, we were both part of the same whole. As connected beings who constantly live in the in-between as we pull on each other’s gravity and motion, how are we meant to not grasp out beyond ourselves in such a futile manner when part of ourselves is always beyond us? Can I ever be content as incomplete? There is this beautiful episode of Star Trek: The Next Generation called The Chase where the character of the Ancient Humanoid says, “there is something of us in each of you, and so, something of you in each other” [5] and it is this point right here: I may hate the “they live on in you” spiel, but we exist in the other, and they exist in us, constantly decentred in one another’s gravity and motion. We are not just one person, we never really could be. We are forever made and remade by the other, reaching beyond ourselves until they are necessity, so that when you lose them, when they are “unmasked”, as Lewis would phrase it, it is as though an amputation takes place.

In speaking of becoming “unmasked” in death from Lewis and weaving through Watts, I am reminded of Gold Leaves by G. K. Chesterton, who Watts would often quotes in his lectures. It is a beautiful hymn which is ultimately about growing old and finding God in everything, and although I am not religious I do adore this hymn for its message as I seek to find that certain magic in everything. I often sit and marvel at the fact that those clouds of atoms may do the beautiful things they do in the moment that they do them, and the certain magic in knowing the impermanence to it all, it only makes it all the more precious. As I have it memorised, and as it is so very beautiful, I will leave you with Gold Leaves today:

Lo! I am come to autumn,
When all the leaves are gold;
Grey hairs and golden leaves cry out
The year and I are old.

In youth I sought the prince of men,
Captain in cosmic wars,
Our Titan, even the weeds would show
Defiant, to the stars.

But now a great thing in the street
Seems any human nod,
Where shift in strange democracy
The million masks of God.

In youth I sought the golden flower
Hidden in wood or wold,
But I am come to autumn,
When all the leaves are gold.

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Live Long & Prosper

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References

[1] Lewis, C. (1961). A Grief Observed. Faber & Faber.

[2] In Your Light – Rumi by st64. Hello Poetry. (2014). Retrieved 28 November 2021, from https://hellopoetry.com/poem/610590/in-your-light-rumi/.

[3] Watts, A. (1960). A Game That’s Worth the Candle. Musixmatch.com. Retrieved 28 November 2021, from https://www.musixmatch.com/lyrics/Alan-Watts/A-Game-That-s-Worth-the-Candle.

[4] Watts, A. (1989). The Culture of Counter-Culture: Edited Transcripts (Love of Wisdom). Tuttle Publishing.

[5] Roddenberry, G. (Writer), Menosky, J (Writer), Moore R. D. (Writer), & Frakes, F (Director). (1993, April 26th). The Chase (Season 6, Episode 20) [Television series episode]. In Berman, R. (Executive Producer), Star Trek: The Next Generation. Paramount Television.

Double Empathy Decontextualised

I give an example of miscommunication and misunderstanding at its worst to decontextualise and illustrate the precarity of double empathy problems and the potentiality for risk which lies in misunderstanding. I then give an overview of what double empathy entails and explore my frustrations of being misunderstood so often.

CW: this post discusses a traumatic area of medical history.

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There is a specific horror in medical history, well, there are many specific horrors in medical history. Let me start that again…

There is a specific horror in recent medical history, in which a population which could not communicate, at least in any way in which we understood, underwent thousands of surgeries every year without any anaesthetic. It wasn’t until 1987 that these patients would be anaesthetised for surgeries in the U.S., and now, our current understanding is that this population actually feels pain significantly more sensitively than the rest of us and exposure to physical pain, like these unanaesthetised surgeries which were carried out by our inhumane medical perspectives which carried their way through the 1990s in some spaces of western medicine, can bring with it long-term negative psychological outcomes. This population, who were they? They were new-born babies. [1; 2]

But why have I just told you this horrific account of pain? What has been the point in discussing these most twisted and, quite frankly, evilly unempathetic practices of surgery, medicine, and healing, and a terrible and false misunderstanding which cannot be communicated away? Because it is, in many ways, illustrative of the story of how people try to treat, support, and engage autistic individuals. We are often left without anaesthetic and unable to communicate our pain in a way which is received with understanding, except, unfortunately, unlike Jeffery Lawson’s mother, Jill R. Lawson, who became a passionate advocate to change the practice of operating on babies without anaesthetic in the U.S. after her son had open heart surgery with only a muscle relaxant, our advocates, despite the best of intentions, are also often the one’s holding the figurative surgeon’s blade aloft. The road to hell is paved with the best of intentions and its directionality downward into the inferno is only made more efficient by misunderstandings and apathy in the face of even the slightest possibility that the other may be suffering. There are whole fields of those who would see themselves as our dearest allies, who ultimately do us the most harm and misunderstand the communication of pain in-between: I am thinking of the pains and torments of rewards and punishments in applied behavioural analysis, the overuse of physical restraint when de-escalation is possible if one took time to actually understand the problem in the first place, the unnecessary seclusion because it is easier to remove us than deal with us, and so many more situations where painful misunderstandings, otherings, and reproductions of ableism also take the form and guise of care.

With babies and pain, it was more than thinking they lacked the same capacity for pain, but the surgeons ignored and muted the most primal tools of communication because a baby was not seen as developed enough to be reacting in such a way to pain: merely spinal reflexes and, well, babies are meant to cry, aren’t they? And well, yes of course, babies are meant to cry and reflexes react, but ignorance to the possibility of pain in a caring profession is unforgivable: the twinge in one’s heart and soul that one ought to feel at the sight and sound of the other’s, of a baby’s, cry and movement away from an object that is a source of pain. These reflexes and reactions were, in effect, tools of social and emotional communication expressing the most agonising pain they were experiencing, but no one saw them for what they were. Rather, they were muted by means of muscle relaxants so the surgeons may finish their job and that was it. A message by an individual communicated in one way and profoundly misunderstood by the other, and the intention of the doctor being that of believing they are causing no pain when the baby receives the communication of the doctor in their work as nothing but pain: this is, in effect, a very loose, decontextualised, and illustrative example of a double empathy problem.

Double empathy is a term used in communication between autistic and non-autistic individuals, but I wanted to try to provide an introductory example that immediately allows you (if the you that you are is a you that hasn’t experienced such a problem) to see yourself in a situation of similar quality to a double empathy problem as there is universality to having been a baby. There is universality to the experience(s) or potential for pains and illnesses which one has which may or may not yet be diagnosed which one cannot fully explain to a doctor, just that it hurts. One may not know anything beyond a misplaced and generalised pain and cannot communicate anything beyond this and the doctor may try all sorts of things to help reduce your pain; they may offer you treatments and surgeries which cause infinitely more pain than they should which you cannot quite fully communicate as you carry on in an attempt to get better because that is what you are meant to do. You are meant to do these treatments to get better. It may not be quite as dramatic as the first example, but I want you to be able to relate, even if it is just imagining yourself at the dentist and they have pumped you full of lidocaine but you still somehow feel every little jab, drill, and jolt, but they have their hands in your mouth so you cannot speak and you are flinching and moving and your heart is pounding and you are trying to get them to stop by waving your hand but they just think you are nervous so make a joke about the nervous shake they do before the 18^th green before continuing to drill into you. I really hate going to the dentist. My point is you think you are communicating pain here; they just see a little bit of anxiety. They continue thinking you are fine; you both go on in your own misunderstandings of one another. I just want you to understand situations where you may have experienced similar processes so you may better understand us and how we navigate the misunderstandings of cross-neurocultural translations.

Originally, the double empathy problem was clearly defined by the autistic autism researcher Damian Milton in his 2012 essay titled On the Ontological Status of Autism: the ‘double empathy problem’:

“The ‘double empathy problem’: a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for ‘autistic people’.” [3]

Now, what Milton highlighted was truly ground-breaking for many allistics and a profound encapsulation of what many autistic individuals knew and had always known but never had the vocabulary to express: the double empathy problem. We would call it misunderstanding. We would call it being misunderstood. We would call it frustration. They would call it a deficit on our part. They would call it “come on, you need to make the effort”. They would call it a thing we don’t fully grasp. We would be silent. We would be bent in so many ways in your often subtle yet violent and well-intentioned efforts of neuroconformity; we would break, and you would then call it progress. They would call it our fault; we would know that is just easier for them to say. We would be left empty, bare, nothing, filled with what you want, and you would finally call us whole. They would finally see themselves in us whilst we felt our most distant: a nothingness presenting as someone, as something neuropalatable. They would call us a person with autism, as if it could be separated from our motion, from our core, from every single atom of our being. We would call ourselves autistic, knowing full well it is not some accessory but central to everything we are, embodied in our actions, thoughts, and communication. We are autistic and they see a neurotypical holding that autism, it is hardly surprising they do not understand us.

In my first blog post I wrote, an essay titled What Kind of Thing is an I, there is one paragraph in it which captures so many of my thoughts, my pains, and it holds this notion of a quiet and oddly gentle yet violent neuronormativity:

“The way I bend and mould and flap and fold to fit and the ways I never quite will, I am pulled in by others to be more of something when I am already enough. Queerly I shift through the world as ‘less than’ in so many spaces that will try to both loudly and quietly, peacefully and violently make me whole, when they cannot see I, that ever expansive pronoun, am already overflowing in both time and space.”

There is nothing quite so gut wrenchingly depleting as to be misunderstood as lesser. To be pushed down into both misunderstanding and lack of worth. To have all the commands and tools you have to express your ways of being and knowing and loving and growing, but it is not quite enough. When I speak, and I use that term for the broadest sense of my communication, I do so in staccato; I am understood only in the crest of my waves as they remain oblivious to the rise and confused or annoyed or frustrated or bitter or tired or pitying or saddened or angry at the fall. It is hard. Communicating is hard.

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Live Long & Prosper

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References

[1] Chamberlain, D. (1989). Babies Remember Pain. Pre- And Peri-Natal Psychology, 3(4), 297-310. Retrieved 2 September 2021, from http://www.cirp.org/library/psych/chamberlain/.

[2] Walco, G., Cassidy, R., & Schechter, N. (1994). Pain, Hurt, and Harm: The Ethics of Pain Control in Infants and Children. New England Journal of Medicine, 331(8), 541-544. https://doi.org/10.1056/nejm199408253310812

[3] Milton, D. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008

Growing Around Grief

I write on Lois Tonkin’s concept of growing around grief and how one learns to live with grief, focusing on a typical bereavement reaction where, although one may integrate the loss and the absence of the other, they still carry the grief. This is to say one does not finish with grief, rather that it is lived and an embodied experience that we may grow with.

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Tonkin’s concept of growing around grief is one that I knew of but had never quite seen so visually until today. It is just one depiction of a definitionally ambiguous concept, grief that is. It is a funny thing to try to define grief, an experience with such universality, and yet when it comes to its embodiment, grief as lived, felt, and truly known beyond its descriptive characteristics, we falter in expression and dialogue, decentred in the loss of the other, as if they buried our words with them. We come to know grief in as many ways as we come to know loss, there is this universality in the differences known to the pains we feel when the other leaves us. There is this commonality to the weight of our losses, to the different ways we come to know the terrible sadness and the bitter joys held in the waves of grief yet to come.

However, Tonkin’s conceptualisation of grief, it is an interesting one and one that holds a lot of truth insofar as grief will remain in that it is typically something that is lived with rather than a finished process, that is to say that one does not reach an end point in their bereavement. You never really finish grief, one may move past the initial bereavement reaction in a typical manner without complications, but grief remains like a shadow waxing and waning in the light of our days as we carry on. And we do carry on, carrying in more ways than one as we are set to carry our losses as we carry our love for the rest of our days. There are of course landmarks of a typical trajectory of grief, but even once things have steadied, once one has learnt to live in the absence of the other, the grief still resurfaces at points: typically this would be at anniversaries and reminders and so on, but life grows around it. The individual grows around the loss. It becomes easier to live without the other, even when their absence once seemed unbearable and unimaginable; life grows, you grow, and it becomes okay again. But yes, I just really like this visual representation because it is true, although the grief may be something one always bears, “slowly life begins to grow bigger around it“, one continues to live and grow and learns to be okay again because it will be okay again.

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Live Long & Prosper

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References

Growing Around Grief – Whats your Grief. Whats your Grief. (2021). Retrieved 22 November 2021, from https://whatsyourgrief.com/growing-around-grief/

Tonkin, L. (1996). Growing around grief—another way of looking at grief and recovery. Bereavement Care, 15(1), 10-10. https://doi.org/10.1080/02682629608657376