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autistic world

  • Seminarverwaltung Support
  • 17.01.2020
  • living with autism

My world is different but I have to live in yours


Trying to explain how I see and experience the world feels like describing a color - you may think we see the same color blue of the sky but it might still looks different to me than to you !


Same goes for how people see me :

Most likely people would describe me as outgoing, communicative, spontaneous/ fun, full of energy, confident!, strong, independent and so on


I am pretty sure nobody would really consider me calm/quite, thoughtful, intellectual, soft or sensitive


I had a coaching last year (before my diagnose) and we sorted out my personality traits I got homework to order the “skills” / traits we came up with from most to least

I asked my ex to help me because I was interested in an outside view and he picked things at the top that came last for me and other way around

That’s because of my good masking skills!

(Even with him)

I play a role - fake it til you make it - and I work it to perfection!

It also became part of my personality since I have to play that role more than I am able to be my true self


People that know me well can tell after a while the difference in my behavior in social interactions or when I am alone with them and they don’t always like the other part of me - the one that is super sensitive/emotional, not communicating much or even pushing you away


This is why I only managed to live together with one guy out of the many relationships I had because before him I could never bear the thought of having to mask 24/7 and not being able to be ME and get some rest from acting


Don’t get me wrong I love my role - a lot !

I even identify myself with it

I enjoy when people find me interesting and fascinating but again it’s a huge effort masking my traits alone and with the shadows of my personality on top of that almost impossible to keep it up for long


I know that even “normal” people mask traits of them they don’t want the world to see but they don’t have to face shutdown, meltdown or burnout as easy as autistic people


And another difference is that I use my role for functioning/ surviving in this world

if I am the dominant spoke person of a group I can control the situation and lead it somewhere I feel most comfortable with

I am rather considered needing a lot of attention or being the center of it than to be perceived as socially awkward or weird and getting left out because my autism would make me incapable to follow


It’s funny how many times - after a long process of masking and acting - I finally feel free to calm down to let it slip and I would just sit there completely at ease and happy, people would ask me :”what’s wrong?!”


I would love to stop masking completely and just be my autistic self everywhere I go but it’s too necessary and important and it helps me to function and being part of a social life


People react to me even before one word is out of my mouth

It feels like they can smell my autism but they wouldn’t able to put a finger on it what’s wrong with me or why they feel defensive

If I introduce myself it either vanish or manifests - which is more often

It’s like (even with my masking) they feel threatened by me

So most people’s reaction = rejection

But since I have black or white thinking I made up my mind after 3 seconds as well if I will hate you or love you (and nope there is nothing in between;)


Maybe if this world would finally be more aware of autism as a real disability and would try to make it more “assessable” for us we could at least drop the mask sometimes and somewhere outside of our own 4 walls!


I am on the high functioning end of the spectrum which means I am able to communicate well and regulate myself in most situations

My masking and coping skills are well developed

I am intelligent and I think what helps me most is being creative and imaginative so I can come up with a lot of ideas / strategies to help me function


But this world is sensory hell if you are autistic - the noice, the hectic, the stress I am just not “built” for that


That’s why I always live on the outside of Berlin surrounded by nature because I wouldn’t want to live anywhere near that busy, loud and stinky center or at least would never be able to leave the house


Even small tasks like shopping /running errants take a huge preparation I can never just simply / spontaneously drop by somewhere

I need my store at my favorite time a day (when least people shop /avoiding weekends at all cost)

It’s enough if they switch stuff around to give me stress but trying to find my products in a different one would make this stress become a panic attack


My eating routine is different as well

If eating is not in my routine included I will go up to 3 days without it

because of the sensory overload a lot of times I don’t realize hunger before the feeling of starving

With food it goes same as I described with outfits : I have changing favorites and i eat the same dish for days in a row and when tired of it something else for the next couple of days

In Restaurants of course I also always! order the same (or at least the closest thing to it)

Any variation causes STRESS

So reading “new recipe” is bad news


Keeping up hygiene is very difficult for me specially with sensory overload the sensations are sometimes unbearable

That’s the only place where I would try new products to find some that are less affecting but Deos,toothpaste, shampoos, hairbrushes ect have strong stimuli


I am over sensitive to caffeine and Alkohol

I was able to work up a tolerance for coffe with drinking liters of coke but Alkohol I have to avoid or I will be drunk after only a few drinks but plus side : I sober up that quickly as well

I hate too much loosing physical control over my body to do it more than every other year


One other reason is that I feel like me being autistic makes me an easier object for abuse - I can’t read people’s intentions of their faces or body language I can’t even tell if someone is flirting or staring at me with disgust

My lack of that in combination with my poor social skills (sending out unintended wrong signals) and having less or different boundaries with others makes me act naive and I become an easy “target”


I think also what makes me different from

others and more likely to get hurt is that I don’t feel pain the way normal people do !

I once burned my wrist in the oven but I didn’t feel it - I saw it after I smelled my burned flesh

I broke my arm a day before my 12th birthday I could see the zigzag shape when I told my parents my dad ask me to move it and I told him where it hurt he said to my mum that he doesn’t think it’s broken because I wouldn’t be that calm

But I am if things are serious

I just was happy that this way I got a fresh cast for my birthday the next day when my parents saw the purple arm and took me to the hospital

I was a total chaos kid : burns, cuts, broken bones and torn ligaments,

seeing the inside of the hospital more often than any other member of our family

My first surgery went really bad with bringing me to life-threatening condition because they simply didn’t take me / my pain serious


I think growing up with “no pain” also made me reckless


No pain - no fear !

Why would you consider a consequence you won’t feel


But there were many injuries i should have avoided since the healing process was long and bothering


Others were caused by my clumsiness - yes I am clumsy if I am in sensory overload or just distracted

it’s listed as an autism trait but luckily it’s pretty mild for me


But that’s the thing - being autistic has so many variations it manifests in different areas but most importantly we all are unique genetic combinations and even with having the same diagnose doesn’t mean we are similar


I worked with two down Syndrom children : same age, same sex and age of sibling, living in the same district of Berlin but they were different as day and night


So please be aware of that when you read my stuff - that it’s my living with autism I am trying to explain and that I can’t speak generally / for everyone on the spectrum


The hardest part for me living in your world -but living it with autism - is that you force people to conform to your rules and way of life and not being open for other possibilities / people that are different !


If you could see MY blue sky it might expand your horizon !