0 Blogging About Autism: How Autism Feels on the Inside

Sunday, 22 September 2019

How Autism Feels on the Inside

I will try my best to give an idea of how Autism feels on the inside and it is based only on my own experience of it because it is a very difficult thing to describe and everyone who has it is affected differently.

Fragile
Outside
I try to appear as normal and I mask so much that it tends to work too well. People are shocked to hear that I am autistic and this is hurtful because I have to work so hard to get to that point but it is not their fault. They don’t see me before I leave the house and in my hard times. They see me on the rare occasions that I do and only briefly and they tend to base every perception based on those short few minutes but they really have no idea.
On the Inside
I am always on edge and I feel very fragile and I still felt fragile before I lost half my body weight because it is my mind that is fragile. I always feel at the mercy of others and I am terrified around groups of people and even some individuals. I have seen proof that struggling with processing people's interaction towards me gives the not so nice people the upper hand on a number of occasions.
I rely on the kindness and understanding of others a lot and yet many of my experiences so far have shown the polar opposite of that. I rely on the perceptions of others because I can never make sense of or even trust my own and this leads to paranoid thoughts and mistrust. When I break down crying, I feel like a failure because I am always trying my best not to get to that point.
Rumination and Difficulties with Prioritizing and Organization
Outside
I appear deep in thought and my fiancé often thinks he can tell what I am thinking based on my expressions but he is nearly always wrong. I appreciate the fact that he tries so hard to understand me though. Lots of things don’t get completed and sometimes things just keep building up and up. I have so many notes and reminders just to function on a daily basis. I rely on written notes to do so much because I need visual cues to process information. I am always fighting self-doubt and rumination by writing notes to remind me of why the things I want to do are important to me and to trigger a response in my brain that reminds me that thing is a priority in my life. My brain has no recognition in terms of what should come first or last or sometimes not at all. I am going to CBT and I have started to catch on when I am ruminating but often, I still miss when it begins and I am often stuck in my head hours before I come out of it and realize what was happening.
I try to arrange my clothes that my NT sister has shown me fit together and put them in my wardrobe by colour. This still doesn’t help me be organized and the only thing that works is to look at my written notes containing “acceptable outfits.” I rely heavily on notes written on my phone for every decision and even the smallest ones. I always wear the same colours because what I wear is based on what other people have told me looks good on me because no matter how long I stare in the mirror at something I am wearing I just can’t decide.
Inside my Head
Once I get distracted my brain takes me on a roller-coaster or new chain of thoughts that bring me in the opposite direction from the one, I started in. Often, I am stuck in my traumas and battling to escape them. My thoughts are linking and so many things remind me of the traumas that it is pretty difficult to escape. I used music as a means of escape when I was stuck in an abusive home and every time, I hear certain songs it takes me right back.
I have so many thoughts and no way to filter them all in order of importance. I can only plan if I write things down and even then, it takes me a long time to organize my words. When I write I often write so much because I have so many thoughts but the longest time is spent trying to rearrange them all into an understandable manner for others. I often have to move whole paragraphs because my mind goes off track.
Lack of Imagination and Theory of Mind
Outside
As a child, I appeared to some teachers as though I just couldn’t be bothered and perhaps as though I was stubborn. Doctors said that I had a flat expression and my mouth was always open but that I had a lovely smile. Now my expressions still rarely express my feelings and I can be feeling ready to drop from stress but people see a calm and happy person or a person lost in their thoughts.
Inside my Head
Wanting to fix everything and help everyone but not knowing where to begin and getting frustrated by it. Having many wonderful ideas but no theory of mind to put them together and lack of imagination in how that idea could come together and become real. That also leads to intense frustration. Being insulted or put down and having no awareness about what it is happening except an uncomfortable feeling because my brain is still processing the person's words and I can’t process at the moment. Every-time I am outside my home I am in sensory overload.
Realization
Outside
Pretending everything is OK, smiling and trying to make people happy and comfortable. I hold it in until I get home and can’t bear the emotional pain anymore.
Inside My Head and Home
Crying after I process and see that in the moment that person tried to hurt me or was ignorant towards me and being upset by the fact that I couldn’t have defended myself even if I had processed on time because of my kind nature. I couldn’t have processed on time enough to tell that person something that might make them be kinder or more considerate to the next person they meet who may be affected by autism or any other invisible illness.
Ruminating About Nasty People or Traumas
Outside
Beginning something but not actually completing it because my mind is stuck in rumination.
Inside my Head
Throwing around arguments inside my head and playing out millions of different scenarios that might have brought about some understanding to a nasty person and trying not to think badly of them in spite of their clear lack of sensitivity towards those who are in a situation they didn’t ask to be in. Extreme waves of emotion, looping thoughts, intrusive thoughts. Thinking of traumatic situations and trying to think of ways I could have prevented them from happening and blaming myself.
Perceptions and Guilt
Outside
I think I probably come across as fussy and a pain in the butt but I am not trying to be. I am just overwhelmed by nearly everything I encounter and I rarely ever feel stable or on steady ground. I sometimes get the courage to ask people if my perceptions are right but this has led to them snapping at me in frustration because they assume, I should just know or that I am trying to be smart with them.
Inside
I am extremely self-aware and self-conscious and I never feel anything I do or wear or say is good enough. I analyze myself in painstaking detail and I am always trying to learn new ways to be more normal. When I first step outside my home I am asking my fiancé multiple questions in regards to whether everything is locked and switched off or whether my clothes are on the right way. I do a final check in the mirror before leaving and then another in the window outside my flat to make sure. I often forget to zip up my boots or don’t realize something is back to front and so I am always checking and rechecking.
I often feel mistrust towards others and sometimes think people are out to get me when they are not. I feel guilty about how my illness burdens others and how I confuse them by being so confused myself all of the time. I always have to check and then recheck, do and then redo. My OCD causes me to have to get out of bed multiple times during the night to feel over each hob on the cooker and the switch on the wall to convince myself that it is really turned off.
I over-explain because I can’t tell if I am explaining enough and similarly sometimes, I don’t give enough information when I should give more. I can’t tell what is appropriate to say and when to say it. I speak and then interrupt a flowing conversation and feel terrible for having done it. I try to say things as soon as they come to my mind and they feel important because my thoughts are always coming in so fast and I forget many important thoughts when they are quickly replaced by a new one. The things I say never link to the conversations that other people are having. I am not trying to change the subject it's just that I have inflexible thoughts and restrictive repetitive thought patterns.
Processing Speeds and Spatial awareness and Sensory Problems
Outside
Everything takes me longer to complete and a few people in the past assumed it was laziness or said things along the lines of “watch you don’t break a nail.” Even though I know that is not the case it still really hurts that these types of people are perceiving me in a negative light. I feel like I run a marathon just by being inside my own head every day.
Inside my Head
No awareness of where my body is or how close or far away things are from me. This leads to me falling into things or banging into things or tripping over a lot. Last time it happened I thought I was far away from the hand dryer after washing my hands. Somehow without any real awareness as to how it happened, I had whacked my head off it. I don’t know if the noise from the hand dryer was overwhelming for me and that perhaps distracted me. I can’t work out how it actually even happened. I also have fallen downstairs a few times by misjudging the distance between my feet and the steps.
I struggle to go down escalators and on the few occasions, I do go up them. I am gripping on for life and terrified. I also hold the queue up behind me because I have to concentrate extremely hard on the timing of foot placement and my processing speeds appear to be slower than the speed of the escalator. A relative once pushed me to go down one and I ended up like buddy the elf with one foot at the top with the other going in the opposite direction.
I also need a lot of time to process going down steps and I have to hold on tightly to railings because I can’t rely on my feet and perception of distances from my foot to the actual stair. I Avoid certain parts of the ground when walking due to unpleasant sensations that I feel through my shoes and my fiancé actually giggles about this when we are out. I think this is also linked to trauma from bullying when people in my class would chant about me falling down a well because I am afraid to walk over any gutters or things that look like I could fall down them.
Sound Overload
When I am overloaded with sound, I feel danger and often my brain goes to thoughts on how to escape and even sometimes suicidal thoughts at this point. Walking past a busy road or being in an environment where rock music is playing so loud the ground shakes is unbearable for me. When I go to the cinema and then out into the shopping complex outside of it, I feel like I am coming into another dimension. I have a washing machine sound overcome my senses and it's all I can hear until I am outside of the building. At this point, it drowns out the noise of people around me and it's like my brain is catching up with the new scene. I could compare it kind of to PlayStation Home which was a virtual world and when I hear those noises my brain seems to still be loading. In PlayStation Home, there was a long loading time between moving from one space to another.
Intense and Unavoidable Fear and Lack of Self Esteem
Outside
I keep speaking about the same thing over and over again and asking others if my perceptions are right. I think I probably come across kind of like a malfunctioning robot and then I start crying and I am very visibly distressed and when it is at the worst stages I sometimes cut my hair or pluck my eyebrows and so I no longer have tools like that around.
Inside my Head
My thoughts just keep getting darker and darker and leading me further from any positive thoughts or hope. I struggle to bring myself out of intense episodes full of fear and this affected me so much when I was pregnant. My doctor mentioned that my BMI wasn’t where it should be at the time and that it could affect the baby. Once I heard that I did everything she recommended but was so angry at myself for not being where she told me I should be.
My fiancé and I had been so worried that we couldn’t have a baby and I wasn't aware then that weight could have a negative impact on anything. At that point, I had dropped from over 19 stone to about 12 stone and now I weigh 9 stone 2 but I was in the process of getting to the healthy weight I am at now. I cried hysterically and was flooded with all of the worst-case scenarios of what could go wrong, after that I couldn’t pick my mind up to positive thoughts again no matter how hard I tried. I bled when pregnant and this intensified my worries. I read that people take a pregnancy test to check if the HCG levels are still high and that it might predict a miscarriage. I was trying to prepare myself for the worst-case scenario and it ended up happening anyway.
Planning Any Major Life-Changing Event
Outside
Making the steps towards achieving the goal and pushing myself to do my absolute best. Writing lots of notes and reminders and scheduling each thing bit by bit to try and cope better with how overwhelming it all is. Once I was pregnant, I was so shocked and happy too. I am currently trying to get my life back on track and studying with hopes of getting into employment.
Inside
In regards to pregnancy, I was falling apart and remembering all the time's people questioned whether I would cope. Lots of people have made decisions on my behalf throughout my life and it has left me afraid to make any of my own. I couldn’t stop thinking about how my family were about to fall apart when I told my parents they couldn’t mind my child (because the person who abused me still lived in their home.
References to this and the entire story are on my Quora questions section and there is a more in-depth write up on my blog. I couldn’t stop ruminating about this situation and doubting myself. In regards to getting into employment, it is something I have wanted all of my life. I always feel the most likely way to do that would be to work from home because my mixed bag of disabilities that fall under the autism umbrella is quite disabling. Trauma on top of that makes me constantly terrified and on edge when I am out in the world. Problems with theory of mind and imagination make it very difficult to trust that things can go well because all I have is the negative memories of my past to draw from.
Outside
Choking on food because I struggle with swallowing food properly and I have had quite a few terrifying breathing spasms that have followed this. This led to me avoiding anything that I thought would cause it for a very long time.
Inside
Trying to choke quietly so no one notices and not wanting to cause a fuss. Last time I had a long stem of a leaf stuck back there and I tried to swallow it and make it go away. The more I tried to swallow it the harder it got to breathe and then I was forced to cough it up in front of people and I was more concerned with the spotlight being on me than if I died or not.
Alone
Outside
I think I sometimes come across as too friendly to others and perhaps sometimes maybe even lost because I do get lost a lot.
Inside
Dark depressive thoughts and fear of what might happen. I am always happiest when I am with my fiance who is also disabled and who I love very much.
There is so much more I could write but I hope this gives some insight into how it feels on the inside.
Autism in Visual Form
This picture sums it up very well in a visual way it feels like there is an invisible barrier between me and understanding other people’s communication towards me and also how mine is being perceived by them. Also, it reminds me of the feeling of being stuck in a different world when I am stuck inside my own head.
P.S
None of the images used in this article belongs to me

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