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.


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 18th 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.


Live Long & Prosper


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

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