I wasn’t expecting to be writing about this aspect of Autism during Autism awareness week. This is not my idea of Autism celebration and I’m not sure I’ve got this down perfectly, but life has an unfortunate sense of irony and a terrible sense of timing.
My mother died this morning. I won’t go in to details and I’m not posting this because I want attention or sympathy. I firmly believe the place for such personal or emotional drivel is Facebook.
I’m posting it because death and loss happen to us all and invariably we are working when it does. We’re working in it’s aftermath. We are experiencing a level of trauma that impacts our work and home life for a considerable time. But, as an autistic person I experience this quite differently to others and this causes autistic people a good deal of additional pain and suffering at work and home. Not just because of autism, but because of the neurotypical expectations of society regarding our reactions to the death of a loved one.
It will take me much more time to slowly process my loss. It feels like jet lag. It feels like walking into a large, familiar room and knowing something important is missing, but not being able to put my finger on what it is. The room feels different now, but I can’t tell you why. My thoughts are like fog and it will take much longer for the grief to crystallise into the dagger that finally stabs my heart from the shadows. And when that happens, much later than people are expecting, they will wonder why I didn’t feel this way at the time. In the mean time I seem ‘normal’ to those around me. They wouldn’t guess that the most important woman in any man’s life has been taken from me: my mother.
There’s a lot of silent neurotypical judgement just below the surface and some of it is not even that silent, when autistics do not demonstrate the expected neurotypical behaviours during recognised societal events, like the death of a loved one. There’s more pressure than ever to mask, to show suffering as others expect me to, as neurotypicals expect it to look. This just makes my pain greater and delays me longer from the processing I need to do to understand what’s happened, what I have truly and completely lost.
To the outside neurotypical world I am a monster without the empathy or emotion that civilised society demands. I do not cry, I seem to be carrying on as ‘normal’, what ever that is. I nearly went in to work this morning. I wasn’t even sure if I should take time off. I’m not injured, I’m not ill and the rules are clear.
But just because I do not cry or show the same outward signs that the typical inhabitants of this planet expect, does not mean I don’t feel terrible loss. I just don’t have a name for it. I don’t feel it all now. I’m mentally grasping at smoke.
My behaviour is much like when the sea withdraws before a Tsunami; you see it getting dryer when you’re sure it should be getting wetter - stupid tsunami, doesn’t it know what a flood is supposed to look like? I assure you, it does, and later on you’ll see.
My sense of loss is profound, bewildering, enigmatic but I can’t manifest it to look the way others do.
At times of great tragedy, whether you realise it or not, it is often the autistic people in your life who keep it together whilst all around them are loosing their shit. That’s partly because we are hyper rational and partly because we take longer to process the pain so we can focus on helping others in the mean time.
We can focus on the logistics of dealing with a tragedy better than most. That’s partly because that’s what we’re good at and partly because it’s a distraction from the experience (a coping mechanism if you will; a distraction that’s familiar and comforting).
And as an added benefit others judge us slightly less because we’re being a productive member of the tragic experience to their neurotypical eyes.
I share all this because you have colleagues, friends and family who are autistic; whether you know it or not. Whether they know it or not. Ordinarily autistics think more deeply about things than most, which takes longer. Not because they’re simply smarter or better, but because they’re wired that way. Literally. It takes them longer to respond; they often appear not to be responding at all. But under the surface there is SO much going on that it can be over whelming.
And here’s the point of this post: your autistic friends, family and colleagues will not demonstrate the typical societal expectations associated with loss, they will not immediately (or possibly ever) wail and scream with sadness at such tragedy. They might even come in to work and appear to act and speak normally, having the same interactions and even sharing a joke. They may only appear a little more distracted than normal. They may very occasionally snap at you for no apparent reason and then it’s gone. It’s difficult for us to even know how to share our loss with others and harder to take stock of it.
And if we do share, then expecting autistic people to act ‘normally’ and judging them for not doing so, simply causes us even more suffering on top of our excruciating internal turmoil at our loss.
Autistic people cannot easily explain the pain they feel, often they cannot even explain the emotion; there just is one. It might not look like we’re grieving, but we are. We just need time and space to process, without the pressure to mask, with out the demand to act “normal”.
So “judge not, lest ye be judged” (as someone supposedly good once said) and show autistics the same tolerance and understanding, you’d show anyone who has suffered a life changing loss, because even though they don’t react like you, even though they might behave like it’s a normal day, they are suffering and they need your understanding, not your judgement, trust me.
#autism #autismawareness #actuallyautistic #autopia