Hi I’m Lucy. I am 19 years old and autistic. Since this is the first post I think I should share my story with you. I really hope it can help you in any way.
If you saw me walking down the street you would think I was a completely normal young woman. I walk like everyone else, talk like everyone else, all because I have learned to. But really I am quite different to the average person.
I’m different. I am an Aspie, meaning I have Aspergers Syndrome.
What is Aspergers Syndrome?
Aspergers Syndrome is a form of autism which basically means my brain is wired up differently. It effects people in different ways. Some Aspies are over sensitive to light, sound, smells, touch, or taste. Some are over sensitive to all senses. Aspies are also known to have social issues and are really smart in a certain subject such as art, science or maths.
I am sensitive to sounds, light, smells, and touch. Plus my socialising isn’t brilliant. But after years of practice I think I’m quite good at it. I have always felt I have been trapped in a glass box. I can see the world outside going by and I want to join in, but the glass wont break.
I am writing this so I can help people. Whether you are a friend or family member or an Aspie yourself, I want to help you understand. I have spent my whole life having people not understand me and its a lonely feeling, like I’m an alien from another planet, or a ghost no one can see. So please read this with an open mind and let me tell you my story.
My parents always knew since I was little that I was different from the other children. They went to the doctors but they didn’t listen. So we were left for years not knowing why I was different from everyone else.
The thing about Aspergers is that it’s quite difficult to detect it in girls rather than boys.
Let me tell you a bit about little Lucy. When I was a little girl I found it incredibly hard to concentrate. I could hardly focus on the teacher for more than five minutes. I would also scream. That sounds strange but its true. I would be fine one minute and the next I would be crying or screaming. Why did I do this? It’s a mystery to me, though looking back, I think its because I wanted my mum. Her smell and her touch always made me feel safe and when she was gone I felt more lonely than ever.
I also found it incredibly hard to make friends. Most kids in my class stayed away from me, but I had a few friends. I remember when I would staple two pieces of card together and make a little bag and then I would fill it with drawings. The next day I would give them out to my class mates in hope that we would all become friends.
It didn’t really work but that didn’t stop me from doing it. I remember one girl in my class would tare them up and chuck them in the bin. But I still didn’t understand that she didn’t want a drawing so I kept on giving pictures out, despite the unimpressed looks of my classmates.
Drawing and writing were things I loved to do. I would make little story books and show them to the class, and the teacher would give me a sweet for doing so well.
I had this horrible fear of loosing things. I thought every object had feelings and the thought of being lost terrified me. I never wanted to loose anything because of how it must feel. And when I would loose things, I would panic. I would scream and cry and go into full on panic mode until whatever I had lost had been found.
I was so scared. Thinking about it now I can still feel the fear that tightened my chest whenever I lost something. I remember I had a tiny Barbie bike for my Barbies that broke but I refused to throw it away. I kept it because I wouldn’t want to be thrown away so why would the bike?
Obsessions. Most people with Autism have them. And I had so many. I loved Sonic the Hedgehog as a kid and would pretend I was running along side him as he goes on all of his wild adventures. I used to wish I would be apart of that world so bad that I wanted to cry. To me, Sonic wasn’t a cartoon, he was a real person who lived in my head and I would dream about.
It was the same when I watched Doctor Who, which became my new obsession. I loved it. I wanted more than anything to be Rose and go and travel with the Doctor.
I have a thing where I find it difficult to separate fiction and reality. The people in the TV were real to me. Every fictional character was real to me. I couldn’t understand that it was just fiction. Even now at nineteen I have trouble separating fiction from reality. It wasn’t until I was around 13 I realised it wasn’t what everyone else was like, but I didn’t care. Fictional characters were my best friends the only ones who understand me and I was content with living in my imaginary world, at least for a while.
I wanted to become and still want to become whatever I was/am obsessed with.
“You have no common sense!”
I was told this all the time, my teachers always seemed so frustrated with me.
I remember when we were making Egyptian masks and the teacher got really exited and asked if everyone wanted to stay in at play time to finish them. Everyone else yelled that they wanted to but I said no, answering the question honestly. She sent me out of the class and I had to stand outside the door while other teachers gave me disapproving looks as they walked by. I learned later that it was a rhetorical question; its not meant to be answered so why say it?
That day stuck in my mind, I can see everything that happened so clearly. I learned something that day; not to speak out of term otherwise I’d get into trouble. I learned that and tried to quieten down and be a good girl like everyone else.
Teachers thought I was odd. In Primary school I always felt I was the stupid one. I would be put in the lowest group and would usually not understand much of what they were telling me, after all I had no ‘common sense’. There was one thing in particular that was completely alien to me, and that was time. I could not understand it at all. I remember my teachers spending ages with me trying to make me understand it but I just couldn’t. One day though I began to grasp it and my teacher was so pleased but the next day it was gone. I couldn’t understand it again.
She told my mum she couldn’t understand how it had gone. I was fourteen when I finally figured out how a clock worked and could read time.
I had a report from another teacher from year two and maybe this will give you a better idea of how I was at school.
It said that I was a bright girl but tended to drift away in my own little world. It also mentioned how I stopped half way through a race to go and pick daisy’s on sports day. I was always so distracted. ‘I was away with the fairy’s’ as my teachers would say. I loved this teacher. She would embrace my imaginative side instead of saying it was a problem like the others.
At playtime I would draw and she would let me stand and show my work to everyone and tell me how good it was. She didn’t try and squash my imaginative side, instead she saw it more as a trait than a flaw.
I think all teachers should have open minds. It isn’t all about the subjects when your a kid, you have an imagination and that is so precious. I had mine trampled all over on and it was painful but people need to learn to embrace the imaginative side of people, not break it.
I was twelve when I got diagnosed. All the signs started to show properly when I went to secondary school. The first day I went I cried because I couldn’t be at home like I wanted to, watching my latest obsession ‘Class of the Titans’ (I was convinced my ancestors were Greek Gods because of this show). I was sat next to a girl who was told to take care of me but she didn’t want to be my friend. I had no idea why. I tried to be her friend for the first few weeks then gave up.
I tried many times to be friends with my peers but they would run away and hide or leave me on my own. So I gave up. I gave up trying to make friends.
I brushed my hair over my face so no one could see it, I glared at people when they came near me and became known as the ‘witch’ of the school. I liked that nickname though, I thought it meant people would stay away from me. I began playing the part I was given. I would say I would curse people if they came near me but they would just laugh. I was a joke. I was an outcast.
My mum took me to the doctors and at first they thought I had depression but after being sent to CAMHS I got diagnosed with Aspergers Syndrome. They made me do all kinds of tests, like jigsaws, storytelling and all sorts. It was actually kind of fun.
I didn’t understand was Aspergers was, but once they told me the creator of Pokemon had it, I felt proud. I was different but there was a reason. But just because I was diagnosed didn’t mean things would magically change.
I stopped going into school. I hated it. I hated the feel of the school and the smells that I associated with the other students. Everything about it made me feel sick.
Eventually we came to an agreement that I would come into school for two hours at the end of the day. They gave me work sheets with anime characters on them so I would do them. By this point I was in love with the Japanese culture and animation. This went on through part of Year 7 and all of Year 8.
My mum researched and applied for a statement for me, to make my school life easier. It took a long time but eventually I got one. In the statement it stated I was meant to have extra help and support which lasted for a while up until sixth form, but I’ll come back to that later.
I spent my spare time living in another world, pretending Lucy didn’t exist. Instead in my mind I was someone else, someone who had friends and had magical powers. That was my life for around five years.
The school I went to was split into two different buildings. One was for Year 7 and 8 and was at the bottom of town while the other was for the older kids which was at the top of town. Going to the other building was like a turning point for me.
I still refused to go into lessons but I went into school longer than before. I still hated it but the feel of the new building felt much nicer than the other.
But unfortunately there were kids that didn’t understand me, and instead of calling me witch, things got a bit more intense. They would throw sticks at me as they hid behind walls or bushes. But after telling a member of staff that soon ended. But whenever I would see them they would laugh at me.
I have intrusive thoughts. And it was when I was fourteen that they got really bad. Going to school became even harder than before and that’s when the self harming started.
I had severe intrusive thoughts that were later diagnosed as Pure O, but not for a very long time. I became very ill in the head. I thought inanimate objects were watching me such as a table or a pen. All the mirrors I owned, I smashed. I was so convinced that people were watching me through inanimate objects that I could hardly leave my room.
I smashed every piece of technology I owned from my laptop to my electric toothbrush. It got worse when I thought my toothbrush could read my thoughts so I refused to brush my teeth. I remember sitting on the back garden with my dads hammer and smashing up my laptop, phone and camera. I was so scared.
Anxiety roared over me and I always had a tight chest. You know when you miss a step and almost fall and your heart leaps? I had that heart-leaping feeling all the time.
I hated going out in public because of CCTV so when I wasn’t at school I was trapped inside, terrified of the world.
Constant state of anxiety. It was terrifying. This went on for about a year. I was terrified.
Everything my mind said was real to me. After all, why would my brain lie?
Eventually I stopped. The scary thoughts in my head slowly subsided and they were now whispers rather than yells. I blocked them out. I began picking up the pieces of my broken life.
It was almost as if something clicked within me. I wanted to learn. I wanted to get good grades and I had to try and find ways of coping. And I did. I went into most of my lessons (even science which I hated) and I did my exams.
I got a B in art, a B in science, a C in English, and an F in Maths. I was never very good at maths.
I was so proud of myself. If I told little Lucy that I had completed secondary school, she wouldn’t believe me. But I had. I even began making a few friends at a Manga club in the school library. They weren’t close friends but they were people I laughed with and talked to and that was so important to me.
I was finally doing okay.
I wanted to go to college but the school managed to convince me to stay another year to do an Independent Living course and retake my maths exam.
This is when my statement was completely ignored. The head of learning needs had left and a new head had replaced her. He ignored my statement. I hardly had any help but I tried my best on my own.
I decided to drop my independent living course and just focus on my maths. Without the help I couldn’t cope. This is when my mental illness decided to kick in again…
My intrusive thoughts came back again but this time it was worse. I can’t even say what kind of horrible things they were saying to me.
Mum took me to the doctors and they diagnosed me with Pure O. I was given medication to help deal with it and although it helped, the intrusive thoughts wouldn’t leave.
But this chapter is about me getting better, and better I did get.
I went to college and met a few friends who were lovely. It was also in college I came out as bisexual. I had been battling with my bisexuality for years but finally I felt I could be myself.
I’m still deciding what to do with my life. I have so many options thanks to the support I get and the wonderful people around me. It’s been a rocky road for me but I finally got there. I finally feel happy about who I am and how I live.
How I cope
Over the years I have learned a few ways of coping with my sensory issues and I am going to share them with you. I hope they help.
So first coping mechanism is earphones. Block out the noise with music that you love. This always helped me, and this is actually got me through each of my science and art lessons.
Another idea is to talk to the teacher and just ask for a few moments of quiet like taking a short walk down the corridor or outside. I did this whenever I was close or having a sensory over load. It really did help. It helped me get my thoughts in order and get recharged.
Another trick is to have a squishy toy. I had a few at school. I would squeeze them when things got to much and this also helped.
Really its whats right for you. Only you know how you cope and can make ways to deal with stressful situations. Everybody is different.
One thing I have recently started doing is Youtubing. I find it to be a way of expressing myself and its really fun to create something. Me and my girlfriend run it and it’s so fun.
Find a way to express yourself, whether its though writing, drawing, gaming, science, or whatever. Do what you love and let it make you happy. Express yourself.