BUT YOU DON'T LOOK AUTISTIC!
I hear this phrase at least once a day ("But you don't look Autistic!"). It is meant to be I suppose a compliment instead of the insult that I hear each time it is said to me, degrading my truest self – the authentic self that I am the most proud of – the authentic self that we in Social Work attempt to nurture and sustain in our clients.
I find this left-handed compliment to be highly autophobic. I also wonder if they had seen me sobbing and rocking a few hours earlier in the frozen food aisle with the surgery level lights blazing into my corneas (even through my almost constant sunglasses), and my covering my highly sensitive ears from the announcements that sound like an oncoming train if they would still tell me that I don't look Autistic or that I must be very "high functioning".(another phrase that I hear continually and that makes me want to either jump (or throw the autophobe) off of a cliff. In all honestly I do not know how much longer I can endure this hate speech couched in patronizing praise.
My being the only out PhD level Autistic Social Worker not just nationally but at this time globally is a double edged sword. My isolation in having no peers in my field lends itself to the kind of dismissal of my disability encoded in the phrases above. I am told that I look "normal" (of course after erasing the most significant signs of my organicity through braces. waxing, laser treatment -and hour upon hours of study of the neurotypical general populous in order to mimic their strange customs, mannerisms and behaviors). This is accomplished through tremendous suffering, including not reacting when lights and sounds at the University where I am an Assistant Professor cause me visceral responses that I experience as agony.
Ironically, the more successful I am at hiding my suffering, the more invisible both my suffering and I become. I am the 2015 version of a credit to her race. If only all Autistics could learn how to suffer as diligently and as silently as I have been forced to in order to survive, would there would be less stigma, hatred, eugenics research and fervor to erase my people? I am weary of suffering in silence, only to have my suffering invalidated due to the level of mastery with which I am able to tolerate the suffering. I am very weary.
I work and live minus accommodations. To receive accommodations of light and sound there would need to be such a seismic paradigm shift in the culture that it would be rendered unrecognizable. For my University, supermarket, a bank, library to stop the assaults of blazing lights and sounds would mean that I would have a day on this earth without the continuing barrage of torture to my senses that I have endured my entire 56 years on this earth. I cannot even imagine what a life with accommodations would look like, or a single day without torture. Perhaps I lack imagination, or hope.
A neuroscientist told me this summer that Autistics will never receive the accommodations that we need. There are not enough of us she told me, and accommodations would be "too expensive". (I remember this same argument concerning wheelchair ramps some decades ago – too expensive – and not enough of you).
If you are reading this, I beg you – do not make me invisible. Do not compliment me on my ability to withstand torture. Instead, be an ally. Challenge yourself to experience a paradigm shift of your own. Looking Autistic, and being Autistic is nothing to be ashamed of. Neither is having engaged in the act of passing- and in the conspiring to be an instrument of my own torture. I have had to survive in a world that has been created without concern for my well being, my agony, my joy.