— Cal Montgomery, Defining Autistic Lives (via disabledbyculture)
(tw: ableism, autism cure)
I spent my childhood and youth being bullied (often by adults), having my personal space intruded upon — when you’re off in “your own world,” personal space doesn’t matter and it can be invaded, all in the name of pulling you out of yourself, of making you more engaged, because being a properly social person is more important than feeling safe, more important than not having to grow up haunted by these traumatic experiences, and we’ll of course conveniently forget how these experiences gave me social anxiety which makes it even more impossible for me to socialize. I spent my younger years being made to feel again and again that I was bad, wrong, not okay the way I was, that it would be better if I were a completely different person. Now, with the announcement of an FDA-approved trial for a potential autism “cure,” I’m reminded that it’s not enough for some people to badger and bully a person into trying to be more “normal,” and punish them for failing, but that it would be acceptable to just change their brain completely. That it’s acceptable to test it out on children who have no say in the matter. That if this works and had I been born in a different time they may have succeeded in turning me into the completely different person that they wanted me to be. And the “me” I am right now? She would be effectively dead.
Even though part of me thinks this can’t possibly work — aren’t they always going on and on about how they don’t understand the “mystery” of autism? — it’s hard enough on me just to think about the mentality that thinks it’s okay to subject children to a treatment (which might not actually work and, who knows, might have serious side effects!) that they have no power to refuse and which seeks to get rid of minds like mine.
Since embarking on my intense detailed quest to find out about my own Autism, I have read countless articles, academic studies, books, and personal anecdotes about the one thing that causes the greatest and deepest anguish among Autists – the so-called lack of proper Theory of Mind.
My own mental and emotional state has run the whole range from the eureka moments, to concrete realisations, to self affirmation, to self-loathing and yes, common to many Autists who really care, an overwhelming drive to overcome and overcompensate for what we are incessantly told is our lack, our weakness, our negative handicap. However, from out of this quagmire, one nagging question has slowly arisen. If these wonderful clever reports are accurate, which no doubt they are to a certain extent, then why is it that the folks with so-called expert adeptness at Theory of Mind never seem to be able to figure out what I am thinking, feeling, or needing? Nearly half a century of existence, and I am still trying to expiate for my terrible Autistic “sins” — to no avail — even with a whole lot of explaining and positive overtures to find a common ground. Nope. Very little success.
I have found love and acceptance among a very very few, but these view me with a kind of sweet, patient, doting fondness and, sometimes, an over-protective instinct, rather than as an equal to be discovered, uncovered, savoured, and communed with. These wonderful people who love me so much, to whom I owe much of my survival, they love me to bits. But they do not understand me. And none of them has ever made the effort to even read one single book on Asperger’s Syndrome, even when I pleaded to them to do so. Nope. They are happy with their own perception of me. And should I even dare to be ungrateful? I don’t dare to revolt. So long as they accept that I am weird, I am odd, I am different, and just care for me, what more can I ask for?
I long for real depth of communion. Thus far, I have only found two individuals with whom I can speak freely and honestly, without the danger of shocking them, and with better than 50% understanding. They are far away — one in New Jersey, one in New Mexico.
Where are the people so clever at Theory of Mind? I have not met any, except for those who have been really clever to find my weak spot and use me, abuse me, manipulate me. Is this what neurotypical Theory of Mind is all about then? How to read others’ thoughts and intentions in order to dance around the campfire of a subtle complicated game of power? In that case, I don’t want to know. I don’t want to be a part of this grand “theory,” this epic convoluted drama of cruelty and delight in suffering.
That is what the academic studies never tell you. They just show you what you lack, compared to the others who have it. But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic — but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.
How could you say I have no empathy when I am thrown into the depths of hell, crying into the empty suffocating darkness as I resonate with your pain, your terror, and your grief? How could you say I have no compassion when I ache to be of help and comfort to you while you kick at my face? You want me to read between lines that you don’t even bother to write, you want me to see beyond my own world into yours, but you don’t deem me worthy enough to share it with me.
To those who think that having a Theory of Mind is so enviable, think again. Is not literal honesty, straightforward caring, and just being willing to listen when spoken to, is this not enough grace and beauty to offer to a world full of mental and emotional game-playing?
Theory of Mind. Indeed. Whose?"
And this is why stereotypes are harmful, and why NO, not all mental health professionals can be trusted to give ACCURATE diagnoses. This whole attitude about autistics being just one way and one way only makes me sick to my stomach. Because the stereotype is rarely, if ever accurate.
— @wordroot (via aspergersissues)