Sharp lines with curved edges lie within perfect circles- confusing, right? As a young person with autism spectrum disorder this is how I see the world. I want to tell people how I see the world differently because a lot of the time people think I am not neurodiverse and the same as them. This is because I can hold down a full-time job (mostly) and go to social events both of which are hallmarked difficulties of those with autism. What I want to show people is that autism is so much more than what’s on the outside and on the inside, I can be really struggling. I am Laurie and this is my autism story.
My first main difficulty is my sensory processing. This means any I take in sensory information differently to most people. Firstly, (especially when I am getting overwhelmed) sounds and lights can feel so much more than they are- sometimes to the point of pain. Even the noise of quiet chatter in the office can sound like someone’s shouting in my ear. This means little noises can become very, very distracting and make me unable to concentrate on my work. To help with my light overload I wear dark blue tinted glasses. These glasses dim my surroundings slightly and make the light not look so bright. Recently, when I broke my glasses I really struggled not only with my actual sight (my glasses have a prescription in too) but with the pain from everything just being far too light. A second element of my sensory processing is not being able to “hear” properly. Physically I can hear but a lot of the time I cannot understand what is being said or it takes me awhile to understand. This can be a problem in a conversation; often people will ask me a question and I haven’t “heard” what they have said so they start to repeat themselves and halfway through their repetition I answer the original question. From experience this get very annoying for others. A second element of this is that I find it hard to concentrate and pick out information when there is lots of different auditory streams at once. For instance, when watching a film especially one with lots of background noise I find it hard to understand the audio even though I can physically hear it. Due to this, I always try to have subtitles on when I am watching television or other media.
Another main issue for me is understanding people emotions and what is right to say in a situation. I know this is a difficulty for many people but in my experience of autism it can be even more so. Firstly, I don’t really understand sarcasm and can take things very literally. For example, when Laura said she would do something in a minute I got upset and annoyed when it wasn’t done in a minute- not realising it was just a figure of speech. I also find it hard to know what to say in a situation to make it appropriate. Whenever I talk to someone my mind runs through hundreds of potential replies to their statement to continue the conversation. I can manage this superficially however it sometimes becomes obvious I don’t really know what I am doing or what to say. For example, when my colleague came in on Monday he said, “god I’m tired”. Now in my head I knew I could say particular responses. For instance, as it was a Monday I know that people complain on a Monday as they have to work on a Monday after relaxing over the weekend. As I knew the weekend was coming at the end of the week I could have said “least its only 5 more days till the next weekend”. However, if the conversation then moved on I would be stuck as I wouldn’t know a response to their reply to their statement. For instance, if someone said, “I can’t wait for the weekend” I would not know what to say because obviously I would have to wait for the weekend as I can’t move time. This not only means conversations can just get stuck with me both online and in person which can make me feel isolated and unmotivated to talk to people but equally can make me seem strange and my responses stilted especially when meeting someone for the first time.
My autism affects me in many other ways which I’m not going to bore people however the most important thing living with the mix of all these symptoms means I am exhausted constantly- no matter how much coffee I drink. As my mind is constantly trying extra hard to work out information and process social interactions I have very little energy to do anything else. On the outside I can just look lazy or unmotivated to do things when in reality my brain is so tired it feels like all my thinking is fighting through a fog to make sense. This exhaustion which I know is always coming means I have to psych myself up for all situations often hours before instead of being impulsive. It also means although I can “manage my autism” in the office and in my social world when I get home I can seem a lot more autistic with many more obvious symptoms as I just don’t have the energy to mask it anymore.
An example of all these symptoms manifesting was when me and Laura went to see Little Mix the other week. I had bought the tickets from my mentor at work and was really looking forward to taking Laura as she absolutely loves them. I knew standing in amongst the crowd would be difficult but this turned out particularly bad. Firstly, I was panicking because routines are very important to me and the support act weren’t on at the time they said they were going to be. Secondly, as I find touch very difficult I was upset as I was pushed into the crowd surrounded by others. Thirdly, the smells, noise and sound was so intense I was very distressed. I had some earplugs to wear to dry and dampen down the noise (I use these at a lot of loud events such as the cinema) but these weren’t enough due to the sheer volume of the gig speakers. I was also getting overwhelmed and upset at the unpredictable loud noises throughout the gig including fireworks at several points. I was getting very distressed but tried to internalise it as much as I could so Laura could enjoy the gig. I wish I could have enjoyed the gig I really wanted to but every other feeling was drowning out my enjoyment. I felt as if I had to peel away layers of sensory overload, panic and concentration in order to enjoy the show- which I wasn’t able to do.
This was my compromise for Laura that night and I tried my very hardest to stop my perception of events from souring the night and I managed my compromise quite well until I went into full blown meltdown mode on the metro. A meltdown is really hard to describe even for me as it’s really hard to remember and sequence my behaviours during a meltdown due to the situation. Meltdowns are different for everybody but in my world all the sensory overload and all the distress and being confused about a situation overcome me and I sort of feel as though I am in the eye of a storm. Inside I kind of shut down- the sounds are so loud and the lights are so bright that I cant really see or hear them anymore, I find it incredibly difficult to speak and everything around me feels detached and a million miles away. Externally because I have kind of switched off I can act very much like a panic attack or an emotional breakdown. I am often crying from frustration, shaking and I stim a lot.
Stims are repetitive calming movements found in autistic people that can escalate the more emotional disruption a person has. Some of my main stims include pulling my hair, repeating a word that has me fixated, rubbing my hands, rocking backwards and forwards as well as repeated rubbing or hitting a rhythm out with my body against an object. I very, very rarely realise I am doing these behaviours and sometimes they have led to self-injury. An example of this was when I was overwhelmed the other day about the routine changing I was repeated rubbing my arm forcefully up and down the corner of the living room wall which cause some very big bruises.
I know whenever Laura sees me overwhelmed especially at the Little Mix gig she really comes into the spotlight and is an absolutely amazing help. Different people recover from meltdowns in different ways. Most importantly is time especially recovery after a meltdown where a person including myself can feel exhausted, drained and potentially weepy. A good way of helping me out of a meltdown is by applying a lot of pressure to my body and in Laura’s case that often comes in the form of a hug. When I start to come out of a meltdown especially with pressure there comes a point where I feel an almost instant release and I start to become aware of what is going on around me again. My breathing suddenly feels different and nicer and the vice goes from around my body and my muscles relax. In the past because I appear neurotypical people have said that I am just being rude or making a scene when I am having a meltdown but this is really not the case. I sometimes really wish I didn’t have autism and that I could just deal with change and understand conversations and emotions like most other people. Most of the time however although it causes me struggles I would not change the way I am as it makes me me and gives me a very different and often very funny perspective on the world.
So that’s a little glimpse into my life and how my autism works in my brain. I can’t comment on other people’s autism or their experiences as they can be very different. I do hope through this blog I can educate people or at least make an interesting read. I am happy to answer any questions people have left on the blog.