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Here is the reality of a day out for me as an #ActuallyAutistic person (usual caveat, we are all different):
1) even in low light I can barely open my eyes without my sunglasses on. In bright sunlight even my sunglasses don’t help. I cannot ask the sun to disappear.
1) even in low light I can barely open my eyes without my sunglasses on. In bright sunlight even my sunglasses don’t help. I cannot ask the sun to disappear.
2) I get on the tube & the environmental noise is so extreme for me that I need noise-cancelling headphones. That’s before we take into account chatting / announcements / other noise sources, plus strong smells, motion sickness & crowds. I can’t make these things go away either.
3) I have OCD as a comorbid condition. As I work down the street I have to step on the same type of pavement with both feet. If there is a patterned floor, I am nearly in tears with stress. I cannot ask people to make even pavements just for me.
4) I get coffee with a friend. It’s bright but the socially accepted thing is to remove my sunglasses. Now I’m in real pain. The background noise is nothing to others but I can’t drown it out. I can’t ask people to stop talking, making coffee, scraping chairs, clattering plates.
5) We are chatting. It is taking a Herculean effort of concentration just to understand the words that are being said to me & to focus on making eye contact. I start to feel a bit like I’m choking. I have no idea what is coming out of my own mouth in response now.
6) After twenty minutes I feel close to tears. I want to be part of things so badly but I am already exhausted. I want to spend time with my friend but I have to go home. But they’ve come out to see me & I don’t want to be rude. So I stay. I’m dizzy & sick but I stay.
7) At the earliest acceptable time, I make an excuse to leave. I don’t want anyone to feel bad, like they’ve made me ill or uncomfortable, so even though it’s incredibly difficult for me to do so, I lie. I invent a more acceptable reason to leave.
8) I walk out onto the pavement and it’s mismatched again. I nearly trip over myself trying to manage where I step. I’m tired and clumsy now. People shove past me. The contact is unbearable.
9) I get to the tube and the stairs are packed. I know there are crowds upon crowds waiting for me down there, along with the movement, the smells, the noise. I can’t ask society to just disperse for me. I am almost certainly crying now. Silently crying behind sunglasses.
10) But I have to get home. I have no choice. Down I go, quietly sobbing the whole way. Train after train arrives so crowded I can’t even contemplate boarding. I sit on the platform, sometimes for an hour or so, until there’s one I can get on. I can’t make everyone leave for me.
11) I get on the tube. There are no seats. I am nauseated & on the verge of a colossal meltdown (which is entirely physical & beyond my control) but there’s nothing physically visibly wrong so I can’t ask for a seat. Elderly people are standing. So I do too.
12) suddenly there’s a problem. The tube is terminating at the next stop. I have to find another way back. But the change of plan is the last straw & I do not have the executive functioning skills to plan a new way home. I sit on the platform and weep. I am stuck and lost.
13) I am lucky. I am blessed financially. I am blessed personally. My husband can collect me, or order me an Uber. I sit in shame, exhaustion, overwhelm, feeling like a child who can’t look after themselves.
14) When I finally get home, I can’t talk. My teeth are chattering. I can’t bear my clothes anymore. I can’t tolerate even a pinprick of light from the TV on standby. My body sobs & stims & I have no control anymore. I am now struggling to exist. I stay inside for a week.
15) my friend texts me: “lovely to see you”
I respond in kind. I never want them to know. I never want to put others out, restrict our choices - ruin everyone’s fun.
I respond in kind. I never want them to know. I never want to put others out, restrict our choices - ruin everyone’s fun.
16) so when I see someone has made an effort to include me - when I see an autism-friendly event or like last week a producer I worked with came into my office first thing & quietly closed the blinds (angel) I feel nothing but grateful.
17) I can’t, and don’t, ask the world to adapt for me. But god what a kindness it is when they try. So please think about this next time you get on your high horse about safe spaces, snowflakes & people making even a gesture of an effort. It makes the world of difference to us.
*walk... obviously
A quick aspie side note, I’ve said “work” instead of “walk” in an early tweet, so obviously this whole thread is now cancelled
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