The video above features Ralph Savarese speaking about his research in the area of Neurocosmopolitanism – Autism, Empathy and the Trope of Personification. As I read this excellent article on the ASAN website today, my mind meandered back to this video and its content. The ASAN article is an excellent response to the study mentioned, about ‘normalising’ of autism (Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schultz, R.T….Tyson, K. (213). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 195-205).
As someone who would most definitely fall into the category of “recovered” and “optimal outcome” according to the Cure-Brigade, studies such as these deeply disturb me at the most fundamental level of my sentient existence.
Anyone who has attempted any research project will know that research is costly. I mean hard, cold cash – yes, money! This “recovery” study has spent money on misleading people. Its unspoken but hugely resonant premise is that Autism is a disease and it can and should be cured, going against other neuroscientific discoveries that Autism is a neurological hardwiring. In the meantime, while “cure” researchers spend money and justify their own existences and employment on useless studies, Autistic people across the spectrum suffer in myriad ways.
Those of us who have spent our lifetimes and energies trying to pass off as Neurotypical are pronounced as “cured” but nobody cares about the hidden costs to Self in this quest to Act the Other. I know the cost all too well. Apart from witnessing the struggles of other autistics, I myself suffer the repercussions every single day. Apart from the sheer concrete physical costs (which includes a high level of constant pain), there are the mental and emotional sacrifices. Acting Normal comes at a great price, but since it is an invisible process, the less sensitive Neurotypical World is not aware, and most individuals are just not even interested to know, as long as us Autistics manage to “get with it and act normal.” One very practical price that I personally have paid, and I know this is common to a great many of us in similar situations, is losing or diminishing of Ability of Self. I have spent so much of my limited energies trying to please the social constructs and expectations of the neurotypical world, struggling to function according to the norms of Other, that I have literally, concretely and consciously had to let go of developing my own intrinsic talents and abilities. I have observed the same happen to many other autistic individuals, across the spectrum. The irony is, the ‘normality’ that we are charged to achieve, is actually fluid, ephemeral and in constant state of flux. This presents a situation where there is no stability, no palpable milestones of achievement, no structure or frameworks, all of which the autistic mind craves and thrives on.
The ones of us who do not achieve this Grand Neurotypical State of Being, are in danger of being accused of non-compliance by ‘frustrated’ parents, caregivers and family members. In fact, despite my lifelong mission to meet the demands of the elusive nebulous Grand Neurotypical State of Being, I have been pronounced non-compliant by my own family, and remain the Black Sheep, despite my many obvious accomplishments in the neurotypical realm. Damned if you do and damned if you don’t. And why would it be considered a success if we Autistics ‘lose’ our Autism and become miserable, depressed, anxious and frustrated Simulated-Neo-Neurotypicals (which is a state of constant confusion and flux, because really, there isn’t one literal standard to follow, thus even more anxiety for the Autistic person)? As the ASAN statement put it so well, isn’t it far better to be Happily Autistic? Why not spend good money on inclusive, embracing and empathic research instead of treating our beautiful minds as if we are diseased and need to be cured?
Familial Critics aside (we all know the famous saying attributed to Jesus, the one about a prophet never being recognised in his own home town?), I have achieved what the neurotypical world would pronounce as “Optimal Outcome.” However, the great question remains: Whose optimal outcome? That of Self or Other? The conundrum may be purely intellectual to Other, but to Self, it can be devastating.
Let’s leave the long drawn arduous journey of my lurid past out of this discussion, it will some day crop up in my autobiography. Right now, I am happier and more fulfilled than I have been since childhood. However, I still live out the ravages, despoliation and stipulations of this Holy Grail of Optimal Outcome, every single day. My personal task at hand is to juggle the demands of the neurotypical system of functioning with caring for my intrinsic fragilities, amidst the titanic assignment of developing and exhibiting my unique gifts and talents, the latter of which are inextricably moored and predetermined within my Autism. Ironically, I am now, at long last, being recognised for the latter traits, by the thankfully inclusive and empathic neurotypical powers-that-be, which to me is a better circumstance than I have ever known. The paradox is uncomfortable, yes, I am being paid to exhibit my autistic talents while acting neurotypical, according to the neurotypical demands of space, time and presentation, but THIS to me, is my personal Optimal Outcome. That at last, I can at all be who I am, albeit within a very tiny, weeny, eeny meeny little space, sleeping upright so to speak. I am happy not to be persecuted. However, surely there must be a better way forward for the generations to follow?
I absolutely understand that there is no state of being that is pain free or without some cost or other. Nevertheless, I wonder if there may be a different approach, a more clement and graceful, inclusive, empathic and reciprocal way to integrate Self and Other, Other and Self, where there may be a Superior Optimal Outcome? We need a Neurocosmopolitan World. Very badly. I may not live to see it come about, but it is now an ultimate goal for my own research and practice.
If you are not yet overloaded from my rant above, here is something more to chew on. I leave you with a link to my paper, a fifteen minute exposé presented in a conference in 2013. Reciprocating Self and Other By Dawn-joy Leong.
Have a great weekend, everyone! 🙂