Stop Romanticising Autism

I hate how everyone seems to be romanticising autism at the moment. It isn’t a nice thing to have, nor is it a choice. It isn’t something that you can turn on and off, like some popular craze. It is a horrible thing to live with every single day. There is no magic pill that eases symptoms. Earplugs don’t work with sever sensory autism. Noise cancelling headphones barely do much. I do not chose to get stressed and overwhelmed with noise, until I am either frozen to the spot with fear or so drained that even with eight hours sleep, I am still so drained it feels like I never went to sleep.

Real sensory autism is like having a spreadsheet open for every, individual sound, light, smell, temperature/draught, creak, hum, including my heartbeat and breathing, the person next to me’s breathing all open at the same time. Loud sounds, flashing lights or anything attention-seeking is like that spreadsheet is flashing constantly in my brain, using up my CPU. Even when the annoyance stops, I have the residual replaying in my mind – sometimes for over an hour, and if this is a sound, it is usually accompanied by ear ringing.

After the overwhelming thing has stopped, the only way to feel okay again is to go to sleep, and a nap doesn’t count. I need at least eight hours sleep or I do not recover.

Panicking, shortness of breath, paranoia, crying, screaming on the spot uncontrollably if it is incredibly bad (and yes, I have experienced this a couple of times), loss of appetite, severe dehydration, usually accompany it and extreme exhaustion to the point of almost falling asleep on the spot, can happen too. Oh and I found out a few months ago that my fainting is an autism side effect too.

I am currently experiencing an overwhelming episode/sensory overload so bad, due to work, that even after a week since the overload occurred, I am still so tired and drained – and I slept for 11 hours one of the weekend days. And now it has been re-triggered again today.

Autism isn’t just wearing tinted glasses in extreme bright lights, like in supermarkets or wearing headphones to listen to music to dim the noise. Autism isn’t a fashion trend. I hate having to wear my tinted, migraine glasses when I go into a supermarket, in case I faint. I don’t feel comfortable wearing my noise cancelling headphones in loud places, in a desperate attempt to dim the sound just a smidge, so that I don’t become rooted to the spot, too scared to move and possibly scream.

I have learnt so much about how my brain works, what triggers things and how to ease symptoms, over the past five years. I absolutely hate how all of these sensory things affect me in my day to day life. I am not choosing to not like bright lights. I am not choosing to dislike loud noises. I walk nine miles every day, because my autism prevents me from comfortably travelling on the bus. I commuted by bus for two months last year, for two hours a day, and I could not function during my working day, because the experience was too overwhelming for me. I wasn’t magically better once I got off the bus, or even a few minutes later. I don’t walk 4.5 miles every morning and evening because I want to, I do it because I have to.

I know that because I am female, I run the risk of hearing, “Grow up,” or, “Get help,” or some sort of snide, nasty remark, whereas if I was male, people would be praising my words and I would probably be nominated for some sort of blog award. Being autistic and female is the same as being autistic and male. Where I work, I have a colleague and we have a very similar autism. He is currently off sick, because he recognises that he needed a week off, because he has reached a severe point of overwhelm. People praise him for recognising that he needed to step away. When I did this, a little over a year ago, everyone kept speaking down to me, saying that I was being pathetic and couldn’t cope.

I’m not asking for praise or anything stupid like that. I just want the world to stop thinking that it is cool or the next trend to say that you have autism. Yes, I am very pleased to know that this is what I have, because it has helped me make a whole lot of sense as to who I am and why my brain/body reacts the way it does to certain things. It has helped me to cut out people who can’t be supportive. But under no circumstance would I ever choose to have the thing that is wrong with my brain, if I could help it. I hate feeling drained and tired all of the time. I hate getting upset, panicky and frozen over loud noises. If I could take a magic pill and adjust my brain so that I didn’t have to wear noise cancelling headphones and tinted glasses, I would. I’m not proud that I have to do this to survive.

Stop romanticising autism. Stop praising males who have it, but labelling females who do as pathetic and, “She can’t cope.”

 

- Josie -