After much exploring on a day-to-day basis within Therapy I have broken down each individual part of my Autism to give my Family & Friends some form of understanding as well as other people who may be struggling to come to terms with who they are. I am no where near the point of accepting that this will always be carried with me but I’m slowly starting to understand this part of me and what it plays within my daily life. So I’ve broken this down into parts as this is the easiest way for me to tackle each element and give everyone an insight into what life is really like to live with as well as the part this plays within my Eating Disorder by having these kinds of struggles .
Bigger Picture
When someone asks me multiple things at a time I tend to lose the bigger picture. I’ll only remember part of the second question and this creates a problem. What should I do now? What do I say? What was the most important? Eventually I will then freeze because I lost the main point of the conversation and for a lot of social situations this can be very embarrassing.
Changes
I find it difficult when things go differently than planned. I have now started to consider that not everything goes the way as planned and that things or appointments may be cancelled at last minute realising this earlier on makes the process that little bit easier. I do become increasingly anxious and need a bit of time to prepare for any changes that may arise.
There are also things I want to change continuously, and things I don’t want to change at all. Some things change without me wanting them too and realising this does take a bit of time – for e.g. a new taste sensation to make way I have to carefully evaluate and change the way I eat which isn’t helpful when battling with an Eating Disorder too!
The changes I find most difficult are the ones where I have to bend over backwards to do. I respond okay to most changes when I am feeling well and can cope quite well with this, but if I am having a bad day the smallest of changes can shut me down. I know that change is a part of life but when things go differently I can feel uncertain and bothered by it. I know at times I can deal with change, but it does have to be announced with some pre-warning as I like to know in advance what it is I am dealing with.
Communication
I feel I always fail in this area as I don’t really understand why people communicate so vaguely. In the moment I often don’t know how to respond to someone; I then realise how I should have responded later on. It’s pretty tiresome in important conversations as well as becoming quite easily taken back ending up being unable to talk anymore. My head freezes and I fixate on how I’ve just interpreted the conversation and I take things differently than the way they were intended. I can come completely confused that it makes me feel powerless and out of control. For me I find it completely easier to communicate writing down than it does orally. Hence why the world of blogging has helped to address this.
It really affects the processing of information and I always seem to distinguish three ways of communicating that all happen at the same time; Verbal (the words), Non-verbal (the facial expressions) and gestures. I don’t seem to be able to channel all of these communications at once and am unable to detect all of these signals at once. So you can see why this is such a difficulty to move on from.
Comorbidity
I seem to have other diagnosis that inflict on my Autism; which comprises of 3 different areas making the need to hide these all more the greater because you don’t want the embarrassment or judgement.
- OCD
- Depression & Anxiety
- Eating Disorder
All of these are difficult but can mask my Autism and I feel it also masks a lot of the above comorbidities. I tend to get over stimulated and stressed out rather quickly leading to outbursts & meltdowns, which I believe I can hide and mask very well leading people to not notice any of the above because I will do this away from people and self-destruct in my own way behind close doors just to elevate the stress and tension this has caused.
Details
Sadly, I’m one for details right down to very last bit which often leads to annoyance in people around me. When someone tells me something I will trail off thinking about the details allowing me to take the conversation completely out of context. When I listen in conversations it comes to me in parts rather than as a hole. These have to be merged together in my head to clarify exactly what is meant. In one way or another my brain is programmed to absorb each piece of detail and it’s only complete when it all pieces of the puzzle make sense. I feel like I demand a lot of attention by having to ask questions, so I tend to stay quiet because it sits better with me this way.
Exhaustion
I feel exhausted very often. I feel this is due to the amount of stimuli I have to process during each given day. I have to stick to my routine and boundaries because it feels safe to me and when there are lots of people around and there is lots of communication it causes overstimulation and I become extremely fatigued and overwhelmed. Social situations outside such as travelling on public transport or crowdedness can cause extreme tiredness. This is why I prefer to drive so that I am in control getting from A-B and can choose when I have had enough of social situations.
Stimuli
For me this is about the effects of sounds, images and touch amongst other things that can really get to me. I feel huge sense of over-stimulation very quickly which has developed further as I have got older especially around noise and when there are many people surrounding me. Sometimes I can stand noises better at one moment than at another but I do feel these are senses that have developed strongly and are harder to deal with especially when trying to focus and concentrate. The worst sounds are the ones out of my control for e.g. fire alarms, Fireworks etc. Having lots of people around me to can be very uncomfortable and over-stimulating unless this is a situation I have put myself in and have some control over. I cannot pinpoint exactly what/why that is. It’s one of the most frustrating things and consequently leaves me unable to communicate, which for those closest can often appear quite difficult to understand. I also like the feel of a heavy weighted blanket not because I’m cold or anything (although that’s what ill tell everybody) but because its a sensory feeling and huge sense of comfort that can calm me down in the given moment and provide a huge sense of security and feeling of home.
Growing Up
During Primary School I was very quiet and reserved and didn’t like attention and never asked many questions, I just hid and kept myself to myself and found that I was pretty good at learning but during Secondary/High School it became extremely difficult. I was bullied a lot for my hair colour and always playing with the boys. As I grew older I needed extra learning support which came with its difficulties as you didn’t want to appear different which resulted in my disruptive/aggressive behaviour as a way to seek help. I realise now I was partly cheered on to do this but also a form of being unable to stop myself from doing this and in the process was picked on because I behaved differently and now I realise that those behavioural differences were typically autistic and a way for me to seek some form of support that I wasn’t actually getting. I literally hated every second of school and even after being diagnosed at 13 it took 2 permanent exclusions from High Schools to be moved to a specialised unit that specialised in social and emotional behavioural difficulties to be able to get the individualised support I needed.
Hypersensitive
I have a lot of difficulty expressing emotions and hardly ever do it when people are around. I’m often asked if I’m okay and I’ll say yes but ultimately deep down I feel terrible (It’s only now after all these years that I’ve started to open up and talk about my thoughts & feelings) because I have no choice, because to get better this is what has to happen in order to move forward. I have found it difficult to get to the core of what it is I was feeling with this recently being a recent development. I don’t like to show emotions that make me vulnerable. My internal emotional side is such a mess to the point that even common sense is out of my control.
If I flip this round towards other people’s emotions, I can show empathy when someone is enthusiastic but when someone is sad I don’t want to do this. I block out the moment and don’t know what to say, nethertheless I do understand that the person may be feeling sad, I feel it with them I just can’t express it. It may come across insensitive but deep down I know I’m not.
When it comes to clothing, I only really have a couple of items that I feel comfortable in mainly this being sportswear (Thick weighted heavy hoodies, joggers or shorts matching in colour co-ord from top to bottom including socks). My skin really cannot bear certain textures of clothing for e.g. silk being a very difficult one to manage and can send the hypersensitivity quite high so I will always avoid this and stick to what I’m comfortable with.
Images / Imagination
I think in images. I see things in front of me when I read or hear something or talk to someone. This even happens when I write, even when I’m on the phone with someone and they say I’m hanging up now, bye; I would see them hanging off something.
I feel like my imagination is very withheld, I would much rather stick to concrete activities such as playing with marbles, puzzles & football rather than role-playing games. I find it hard to distinguish between what is real and what isn’t which sometimes leaves my mind in abit of an overload. For me everything has to be based on facts, for e.g. I can type out how and put together factual information based on myself or what I know because there is no pressure, but if something is set for me to do and I don’t fully understand I will stare into space and look quite vague and not be able to produce anything. I love applying my imagination through writing and art because I can really lose myself in my work and I notice that I really enjoy doing it, it gives me something extra that I can express the stuff I write, reread it, create and live through it.
Intelligence
In Primary School teaching was completely different, it was more of a relaxed approach and a lot easier to manage or cover up that you might not of understood what was being asked, but for some reason it didn’t matter. As I transitioned through it was hard to know what level I should be at, is it best to be the lowest and sail through or be at the highest and fail or is it somewhere in between? Because I was good at some things but terrible at other subjects. English was always the stronger subject but Maths proved very problematic. I am terrible at knowing the essence of things, I forget a lot, and my attention span is incredibly bad. Myself and numbers just don’t go hand in hand whether this be telling the time, money or mathematics in general.
Jobs
When I left the pupil referral unit I took up the offer of an apprenticeship at Norwich City Community Sports Foundation; Age 16-18 – My first year at CSF saw me coaching in Schools covering lessons and extra-curriculum clubs in many schools across Norfolk & Suffolk. I gained and completed many qualifications which included; An NVQ Level 2 Apprenticeship in Sport & Active Leadership along with a variety of many Football/Sporting qualifications to enable me to progress forward in the career path that I had chosen. All this came to an end when I wanted to push myself further and gain other qualifications I was told I was not ready. To be told that was a huge setback for someone who felt like they were able to go that one step further. This left me with no choice but to look and find another job which would allow me to use all the skills I had worked so hard at gaining and to allow me to gain more qualifications within this field that I dreamed of doing.
I was soon able to take on a job at Dell Primary School: 2013-2017 – Age 18-21. After feeling knocked back by my previous employers and not feeling good enough, I made the decision to resign in hope that with bit of luck I would get the job and luckily for me I did. This was the start of a new but old exciting opportunity. My time here was well spent and I gained many more qualifications and allowed me to my own stamp of things to do with the organising of PE Lessons, Lunch/After school Clubs, Swimming and a Sports Leaders program teaching all pupils ranging from Reception – Year 6. I am quite confident in saying that this job isn’t exactly Autism proof but the reason why I kept the job is because it allowed me the opportunity to give back to children where the education system had failed me. I loved the job so much and felt at home and in a safe environment but unfortunately, I’ve had to pay for this with what a call a physical burnout and unhealthy relationship/balance with teaching sport and playing football the expectations/pressure that felt so high. However it was honestly the best job, I felt comfortable with it and a massive sense of being at home in a safe environment whilst building relationships with staff, pupils and parents. I was well supported by all and I think everyone could see my passion for sport shining through as the rapport I had with all was excellent.
Sadly, though all this did have to come to an end as the school became an academy and the people who took over decided they wanted outside provision from Norwich City (My previous employer) instead. Due to having a generic contract for support staff I was forced to be a Teaching Assistant within the classroom and all of a sudden, the realisation hit home that what was to come would be a great struggle. After quite a lot of hassle and various other employment jobs I took up working for my Dad’s local company Window Wizard in 2018 working in the office organising and managing day to office roles; Quotes, Invoices, Telephone Calls, Customer Service and organising of day to day work load and appointments for Repair or Installation work of Windows, Doors, Conservatories, Garden Rooms etc. This job allowed me to make it my own and be my own boss with the full support from my Dad in order for this change of career to be successful, flexible and meaningful.
Literal Meanings
I take language quite literally to fullish extent, I’m yet to learn and find ways to do this to be able to communicate better & easier. I also see the literal meaning of something that’s being said first, it is only after that the non-literal meaning of the way it was intended I understand. I am therefor only able to respond when I know what is meant.
Taking something literally can be quite funny at times when there’s an expression that I can actually see happening. It can lead me to chuckle to myself every once in a while, out loud to disregard the fact of what it was that was actually meant. Pretty often ill see things in front of me quite literally but I just won’t understand it so making a joke of the literal interpretation is the best way for it, even though sometimes this can lead to misunderstandings for the other(s) involved.
Motor Skills
I seem to be quite lucky in one or two areas of this, I only suffered abit with balance and co-ordination growing up but was super lucky to be able to dismiss this. I belonged to one of the better ones at sports during school and always participated and engaged well especially because it was physical and the ideal way to notice and keep on top of my weight and shape.
On the flipside I suffer in other aspect of group situations; for e.g. I find it extremely difficult to place myself properly within a group or space up a table and can find my attention span also prevents me from keeping my head within the game or traffic in conversation.
Precision
This is probably one of the most important things for me, I really need clarity, especially when things are unclear otherwise it’ll play on my mind and I’ll just keep asking until I have something to work with. I need to be in the know and know precisely what it is, when it is, or where we are going as I don’t handle uncertainty very well. I try to be flexible and let things happen but sometimes I succeed sometimes I don’t.
For me it is very important to have a general schedule of my week and work towards this to a fine art because I don’t feel like I can always adjust to change. I use reasoning to try and figure out how much time something will take so that I know whether or not to plan something after. It does differ per situation as to what happens when something isn’t clear or precise. Sometimes I’ll endure a meltdown and this will be visible or masked non-visibly depending on the situation. I don’t beat around the bush and therefor just say it exactly how it is some people can grow angry with me or appear irritable or impatient with this even though I’m only trying to get a clearer picture.
Rigid
I am very rigid and obstinate in the way that I think and can find it hard adjusting to other people’s opinions. The older I’ve become the more I have noticed this. It’s not easy because sometimes I just simply don’t understand why someone else can take a point of view that I can’t take.
I have a strong sense of opinion and sometimes dump this with a lot of conviction which can make myself unpopular with those around me. It’s a part of the strong sense of justice that I have always had. When something that’s unjust I will fight against it even if it means standing alone. I don’t want to be obstinate but because of my fragmented thinking and being so strongly focused on one aspect I can find it quite difficult to see the other side of something. This is however dependant on the situation or people. I never seem to have enough time to think before I speak so it never occurs to me to think about it like this, or like that!
Structure
Structure is an incredibly important thing in my life, but I’m just not always able to create this but I know I need it very much. When there is structure to things it prevents me from losing track and being in a complete form of chaos. The daily routines though are just a form of system in my own head which I find increasingly important.
For me having difficulty switching from one thing to another is related to being in my own world and sometimes I perhaps don’t behave in a way that is socially acceptable. It is difficult for me when there is no clear transition between something and something else. For e.g I might be talking to someone about something very fascinating but the person listening to me might not think it’s interesting at all and I can become very quiet all of a sudden. This is what I call the switch and when it happens it’s difficult and takes up a lot of energy.
Theories
Being Autistic sees me focus heavily on the details and have difficulty seeing stuff as a whole. I’m unable to make some coherent out of a situation which effectively takes more time and see’s less context sight within a situation.
I think in a type of circle from myself to others and back again. I constantly compare myself to others and their relation to the world. I believe I am always right and I don’t try and deviate from that. I feel like I am a good observer but on the other hand forever missing a lot of information and because of this my brain is a lot slower and is more difficult to apply in social situations.
I have lots of functions and encounter a lot of problems with impulse control, supressing obvious but incorrect responses, adaptation to strategies and self-monitoring which play an important role in control, planning and flexibility. You could compare it to a factory; everything works perfectly but when the routine has gone or something happens unexpectedly, everything goes off track. All of which lies with the processing of information and that every needs to be processed; sounds, smells, communication, language, emotions, urges, feelings, nutrition, hormones and medication.
Withdrawing
I like to withdraw myself when I am over-stimulated. I have to be alone. I know I will ruin the atmosphere if I hang around and pretend to be fun to be around because when I’m over stimulated I have an incredibly short fuse.
I often withdraw myself from friendships every once in a while, because I have too much to worry about and I can’t have anything else added to that. People often sense that something is wrong or I am angry or something. Not everyone seems to understand I don’t always feel like speaking or meeting and I find this very difficult to manage when you just want to hibernate into shutdown mode. I zone out and become a bit dreamy or become short and blunt with my conversation almost hinting for that person(s) to stop talking to me.
I spend a lot of time doing and enjoying stuff by myself especially on the computer and creating my own versions of things and putting my spin on it, because I get satisfaction from completing this and a sense of achievement. I find this most helpful when trying to zone out and move myself away from the feeling of anger or frustration or sadness towards a situation. I consciously withdraw when I want to keep my thoughts to myself, partly to do with the fact that I may say something too confronting to someone else or that leaves me open in a vulnerable position.
So in a nutshell that’s me and one of the many battles which I deal and suffer with on a daily basis. A paralysing exhaustion which results in many ongoing struggles but one I am learning to accept and face and work on for better acceptance of myself. Im beginning to use this time effectively to put together the final pieces of the jigsaw and put the pieces together to learn to finally accept who I truly am!
“We cannot change anything, unless we accept it”
Carl Jung
The Mind Diary 