To mark the end of World Autism Awareness Week, Beatrix, my amazing autistic daughter, would like to share her personal experiences of Asperger’s. She would really like to make a difference, to make her own little mark on the internet, so please share…
To some of us autistic people it’s like a big dangerous world out there that we just don’t understand: having Asperger’s is like constantly having a heart attack that can’t kill you.
Walking into a room full of people is like trying to look into the sun. I would just have to walk out, I wouldn’t be able to bear it. Being in a busy place is really hard, I probably wouldn’t be able to cope, people are zooming fast and coming out at you all the time. I have to try to keep myself hidden.
I don’t like to be looked at a lot of the time, for me that feels like it’s rude. I like to be hidden because I feel like lots of people stare at me and it makes me feel worried.
If there is a loud noise, it feels like a big boom that can kill you. I also don’t like super-quiet noises because it feels like a really terrible thing, it tickles in an unpleasant way. I’ve super-sensitive hearing so when there are tannoy-type announcements (at the supermarket or at the train station), it is really scary and hurts my ears. I am always very scared that a fire alarm or a siren might go off.
When people touch me, it feels like a spider or something else that you are absolutely afraid of and it makes you go crazy, it’s just a horrible, horrible feeling and people need to respect that and it’s one of the things that they don’t. They think I’m the mean one. I can’t go into a lot of shops and restaurants because they smell too strong and because the waiters and assistants come up too close so I don’t want to look at them but I know they think I’m rude so I have to try and suffer it.
If there’s a weird texture it can make me feel sick or crazy, it can make me do something that wouldn’t be “normal” like wriggling my arms or jerking about because it makes me feel like I need to make my actual bones shake, to get air onto me, and to get rid of the bad feeling as quickly as I can. Sometimes I have to scratch feelings off my skin. I can see how things feel, it sounds crazy but it’s true. For example, I don’t like carrier bags for how they feel so I can’t even see one without feeling sick and angry.
Sometimes if there are too many things going on at once I can feel crazy and act mad like a dog or a cat or something… I can make noises to make myself feel better as I feel more in control but that makes people look at me and that makes me feel worse.
For me, a surprise can make me rage. Even tiny things can make me really badly cry. Sometimes I feel like my body has a mind of its own. Something happening suddenly that I can’t immediately explain can make me run away, even if I might be putting myself in danger. If I have been out somewhere, I might need to spend a couple of days in bed to try and recover and get my sensories under control.
Some people think that because some autistic people don’t wear clothes, or wear ear defenders, they think it’s rude or annoying and bad and think we’re bad people or we have bad parents but that’s just not true. For example, I like to stick my tongue out because it feels really good, I’m not being rude.
BUT IT’S NOT A THING THAT NEEDS TO BE FIXED, NO ONE SHOULD BE ASHAMED OF ME OR ANYONE LIKE ME, I’M JUST ME.
Thank you for taking the time to read this. Please share.
US readers: please note that autistic people would like you to Boycott Autism Speaks and choose not to “Light It Up Blue” this April, Autism Speaks spends 12% of budget on autism prevention research (eugenics) and only 4% on support for autistics. For more info and how you can truly contribute to create a world where neurodiversity is accepted, then check out the Twitter hashtag #RedInstead. where you’ll find amazing #ActuallyAutistic adults to follow… Thank you.