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.
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.
Live Long & Prosper