Through my eyes Part I
It’s taken me a while to write this piece as I feel I need to get the exact words to describe quite abstract ideas. When I used to write essays I pretty much constantly had a thesaurus open as my vocabulary when trying to explain non concrete things is pants and repetitive. I’m sure I’m not alone in this…
I guess I have been asked: how does it feel to be autistic?
In all honesty I don’t know the answer to that question. I feel like me if I’m quite honest. I know no different. It’s a bit of a peculiar question as it’s a bit like asking someone a question of ‘how it feels to be something’ when they have only experience of that one thing you are asking about. It’s a shame that we cannot insert something similar to an SD card to film how others perceive the world. I think that would be so fascinating from a being nosey point of view. The filming however would miss out on the most crucial part of being human: feelings, moods and how our bodies experience them. It also depends with that question what you are referring to when you are describing autistic… Do you mean perceiving difference in language to you i.e. different interpretation and maybe even a struggle to communicate needs? Are you referring to social anxiety and anxiety, which although can be a part of autism is not limited to autism? Or are you asking about something else like sensory experiences or something I haven’t even mentioned? Due to the spectrum nature of autism, it would be really hard to provide a global answer that encompasses everybody because, well - it won’t. I don’t even think you’d find an exhaustive list of the questions I was posing breaking down my former question.
But what I do know is how it feels to be me. That is something I can talk about… a bit.
When I was younger I always thought I was quite normal (which is hilarious actually because no one is normal - I guess the word I am looking for here instead is more along the lines of ‘standard’ in terms of the way I saw an experienced life in comparison to others.). This is in part due to the fact that ASC is a hidden disability; I couldn’t see any difference, abnormality or disorder. Another factor is that I was diagnosed quite young in comparison to many and my parents never mentioned this diagnosis to me. Bear in mind there were far fewer resources and public press on autism in the mid 90s and the unknown nature of ‘prognosis’. I attended a local mainstream primary school and a local mainstream selective secondary school with pretty much zero assistance or alterations.
I really did struggle with the transition to secondary school. I had left my secure group of friends and placed in a new, alien environment with a bunch of strangers. Most 11 year olds I think find the transition to secondary school daunting. Some people do find it takes longer to settle in. I felt personally at the time it took me longer than ‘longer’ to settle in. Certainly I didn’t feel as accepted by my peers at the time, whether that was reality or not isn’t really relevant any more. I felt at least 2 steps behind, confused, out of place and vulnerable. I was scared and fearful of second guessing what would set certain teachers off on a shouting spree with unpredictable behaviour on their part. I was ridden with anxiety on certain days and was permanently on edge on technology, citizenship and PE days, and anything involving group work. I felt as if I was trying to talk and make friends but with no reciprocation, probably because I was so nervous I was getting nowhere. It did improve over time.
I felt more confident when I picked subjects I wanted to do, gradually made friends and acquaintances through my studies and as the teacher/pupil relationship became more adult and more mature. I think it suited me better when teachers know you want to learn and smaller groups in general. But I still felt the same anxiety walking into school on first day of year 7 as the last day of year 13. I felt much more comfortable at university, the anxiety has somewhat receded, but not completely.
That is rather a brief summary but it explains that I was a walking anxiety and social anxiety wreck at school. I wanted to be part but hadn’t found the right people yet and didn’t have time and space to recharge. I wasn’t good at looking after myself, I didn’t understand when my body’s senses were being overloaded, how to tell others I was struggling and why, how to manipulate social situations to suit me best (I’m a surprisingly busy lady now) and why in fact I was behaving like this. Time has taught me not to be as harsh, that it’s okay not to feel okay and more than likely you are not alone.
What brief advice would I give to people who work with young people in light of this?
- Be clear with your motives and behaviour. I took teachers shouting on a highly personal level to the point it got silly, because I interpreted it as directed at me if it was a general shout and I had done nothing wrong. I know this is so difficult to implement having taught English abroad for a short time, but clarity in communication is so important. I'm not saying don't discipline either, just to have an awareness of your pupils/students.
- Have a space where your young person can go to feel safe and do not pressure them. They know their body better than you ultimately and they may not be able to express a feeling or repulsion in a way both of you can converse in. Taking away fear or stimuli may help - hence the space away.
- If you have a 1:1 level of communication like a mentor encourage self awareness and acceptance. Everyone is different and no one should be something they are not, whoever or whatever they are. What causes pain for them? Are they introverted or an extrovert? What relieves their stress/anxiety? These small things repeated over and over are part of the best toolkit you can give any young person. If they do open up, it may have taken a lot of time and courage too.
Do remember every person, autistic or not, is different so this is just my view that you may find helpful.
Speak again soon