Same me, just different

I have been open and honest about my journey from the start. There have been plenty of learning curves of which there always will be-but I’m learning that curve balls are ok and I can deal with them slowly in my own way.

I struggle everyday with little things, and today was certainly no different! Today I took a huge step in the right direction, I went to see the GP. Even this step is massive for me, I chewed my Chewigem necklace more than I have ever chewed it-and that is saying something!

The GP was great he listened to my concerns and all of my struggles, he even noted that although I had written down bullet points of things I wanted to talk about, even speaking to him was very difficult for me. This said it was a great appointment!

A year and two months since getting my Irlen Syndrome diagnosis I am now pleased to say that the GP has referred me so that I can get a formal diagnosis of ASD.

I have learnt over the last few months in my fight to get to this point that it’s ok to be yourself, yourself is special and that sparkle should never be hidden. Quirks or differences should be celebrated. I have learnt that it’s ok to be yourself and to break down the massive barriers that over time we have built up to mask who we are and our struggles. More importantly for anyone reading this who may think that they show traits of ASD then don’t put off going to the GP for your first step, yes it may be hard and daunting but it’s a great first step that will help you to begin to understand yourself more fully. The GP didn’t ask me lots of scary questions just a few of the right questions and gave me time to think and answer. So believe me it’s not as scary as you may first think. If you are on an ASD journey please feel free to drop me a comment and just know that you aren’t alone.

Embracing my true self

So last week I was given the best piece of advice from my manager, which was to be yourself and not do things just to fit in. This is something that I have always said to others but haven’t quite stuck to myself. This hit a chord with me, I realised in my quest to be “normal” I wasn’t being my true self; I didn’t even know and still in parts don’t know what my true self is. Society has a funny way of changing you and making everyone fit into a stereotypical mold.

I’ve realised that most of my life I’ve been masking, masking means that you hide who you are, you look at others in social scenarios and copy their behaviour. One bad thing about masking that I have noticed is that no one really knows you’re struggling as your struggles don’t show over your mask. When people then see a different side of you they don’t understand where it has come from.

At the weekend I had what I like to call a shutdown weekend, my shutdowns happen when I can’t find any motivation to do anything or go anywhere. I like to just switch off from everything, it’s in these shutdowns that I like to lie in a dark room with music on really low. Once I have had a couple of hours in this mode I can usually muster up some energy to do things again. These types of shutdowns are common with ASD due to sensory overload.

This week I have fully embraced some of my true self. I have been building Lego sets, I particularly enjoy the disney sets. These are aimed at children aged 5 years and up, but age appropriate goes out of the window when you enjoy something. I have also taken my Lego to work and built it in the staffroom, I have this week decided to try to come out of my box and be myself.

I have realised that trying to be myself is like opening a box and picking something out at random-you never know what you are going to get. I think this is true for anyone with ASD you never know what you’re going to get and it’s the same for me. I have realised that there are many layers that make up who I am-peeling back these layers is going to take time, removing the mask maybe hard but I am trying. I thought I’d start this process in the workplace where I now am the most comfortable, I feel I can be me no matter what that me is and that it won’t be looked upon as “odd”. I have come out of my box this week, I feel more confident in myself and I’m trying to talk more in social situations which petrifies me and still sometimes I don’t know what to say and that’s ok. This whole journey and being your true self is a massive learning curve.

I have also learnt to embrace the Stim, stimming means that we do things to compensate for our sensory overload. For me I fiddle with my tangle and I also chew. I found these very useful chewable Jewellery, I bought this necklace and chew it when I feel the need to. Some won’t agree with chewing on things but it’s important to not tell the person not to do something if it’s irritating you, this is because we cannot help it, this behaviour soothes us.

I am on a journey of discovery to find my true self and become more and more confident.

Fussy eater

I am a self confessed picky/fussy eater and everyone knows that I am. This is linked to Autism due to the textures,smells and feel of food.

I don’t like to try new foods, new foods scare me! I like to stick to what I know because there are no surprises. It’s not necessarily that I don’t like the food it’s that sometimes I don’t like the flavour or the texture or even the smell. Onions are a big no no..Everything about them, the smell, texture and taste all put me off. Needless to say that anything with onions in I always pick the onions out, this can take me ages sometimes especially if theyre chopped up nice and small.

When I eat food I always eat it in an order, I think about the way I’m going to eat it before I eat. Most people will get a Sunday roast and have a little bit of meat, with a bit of roast potatoe and abit of carrot on the fork at the same time. I cannot work like this, I have to eat one thing at a time I cannot mix foods! It takes me a while to eat a meal. Once I have started eating one item I will have to finish it before moving on. So I would start with the roast potatoes first in this case and finish those; once theyre finished I would start on the meat. Now this is my only exception to eating something together I will have a tiny bit of stuffing on my fork and then the meat but that is about the only time I’ll mix foods. Fussy eating and Autism

The first picture is a plate of Sunday dinner and how others would see it. The second picture is how I see it and the order in which I would eat this particular plate of food. Some would say I have a very bland range of taste and foods that I like and eat. I like to keep a kind of routine with what I eat and what day, for sandwiches at work I always eat chocolate spread on bread and then have a packet of crisps. This is everyday and I eat it in order without mixing. Sandwiches first then open a bag of crisps and eat.

One place that my food habits can be hard to control is in restaurants or eating out. It takes me a while somewhere new to look through the menu with a fine tooth comb to find something that I know I will like. In places where I know the menu and I know what foods they do I find something simple that I like and then stick to it. These social occasions are hard for me food wise because then it does look like Im a real fussy eater.

All in all I like food, I enjoy food and I enjoy smelling food. I know what I like and I stick to that. It’s hard for others to understand this but it’s the way I like to eat my food.

Life on the spectrum

It’s nearly a year since my Irlen diagnosis and I’m on a quest for another diagnosis one that I know is harder to get as an adult. ASD which stands for Autism spectrum disorder.

There are certain areas in my life that have pointed me down this path and having done research I know that each diagnosis is different with lots of different traits depending upon the person.

People that know me will know that I love routine, I do things to the time! I always leave the house at the same time to get to work, I have the same timetable so I know exactly what’s happening and when. Routine for me is something that I cannot do without, I like to know what is happening and when,when there are changes I dislike them strongly. Changes make me worry and feel uncomfortable, if there’s any changes to my timetable at work for instance I like to know in the morning so I can prepare myself. I also like to know of any changes on a post it note so I can physically see a change.Routines

Ive always been fussy with food too, however I always have the same thing for lunch, I just can’t bare to change what I have on my sandwiches. I also have a pack of crisps with my sandwiches but I cannot eat both things at the same time. Most people can have a bite of sandwich and have a couple of crisps at the same time. I cannot do this I cannot ever mix food together. For example if I have a Sunday roast; if I start to eat my chicken I have to finish it. I can’t eat the roast potatoes for example until all the chicken if I’ve started it is gone. I always eat my food in an order.

I have found more and more that I have really bad sound sensitivity. In crowded places I cannot block out or isolate sounds. I always hear everyone elses conversations which in a crowded place is just too much. As I drive I can hear my tyres on the road surface and I can hear my engine, I always have to turn my music up because I can’t block the sound out. Little things that others tend not to notice I pick up on. This is the reason that I always turn down invitations to go out with friends because I’m always thinking about the noise level. Knowing that I won’t be able to hear conversations properly makes me anxious. So I try to avoid these kinds of outings at all costs!

I am learning to come up with strategies to help me to cope in various situations. It is harder when people do not know how to help you but likewise you do not know what to tell them will help you. Communication is also another struggle of mine, I have always been a quiet person but when I engage in a conversation I’ll say a little bit and then won’t know how to join in or how to continue the conversation. Sometimes this makes conversations very awkward but in my head I know what I want to say I just can’t say it because I don’t know how or I feel like it’s not the right thing to say so I go back to being quiet.

Lesson of my blog post is, everyone is fighting their own battles. I fight this one everyday but you wouldn’t know, I am me, different but me. I am the quiet girl who always smiles and does everything on time to the minute. I am the girl who enjoys having company but also prefers her own company..Never judge a book unless you’ve walked the same road.

Autism quotent this is a really useful and quick link, it’s a foundation for someone like myself to get a result to take forward for a formal diagnosis. If you’re curious it’s worth doing.

Seeing things differently 

Before I got my Irlen glasses I used to try to avoid reading. I hadn’t read a book since secondary school! The writing would never stay where it was meant too, the spacing between the lines would disappear and the writing would sit on top of the next sentence. Reading was never easy and when it came to reading black words on white paper well that was a nightmare! 

I have noticed however though that I get some numbers and letters mixed up, something I wasn’t aware of before. 

For me I get the letter A and the 4 confused, the letter B and the number 8 and the letter h and the letter n all confused if they are near or next to each other. Let me show you what they look like next to each other; 

A4

B8

hn 

You can see why someone with visual processing disorder would get these letters and numbers confused. When put together they look very similar! Sometimes I have to re read a piece of text to try to work out what I have read or even to understand what I have read. I’m getting better at the understanding of a text now that I have my glasses but I still cannot tell you what has happened in the book I’ve read. I know in my head what I have read but telling someone else I cannot do! 

Irlen Syndrome is like a visual dyslexia, it affects everything you see and read. Sometimes different fonts in books for example are a task to try to read. I’ve learnt that not everyone sees the same way that you do, for someone people like me, we need more time to process what we have read and have time to understand it. Although Irlen is to do with everything visual it is not an optical problem, it is a brain problem! 

As the picture above says Irlen is on a continuum, this is a part of how you are diagnosed and when your symptoms begin. For me as in my Irlen paperwork I was diagnosed as severe, this means that my symptoms start within 20 minutes of being shown something that could trigger me. But with my glasses on I can now read for hours without getting any symptoms and enjoy a good book,so different to the life I was leading before my glasses!

Since having my glasses in April I haven’t stopped reading, I have even started to read the Harry Potter series of books which get thicker. I have found that I now enjoy reading and can’t wait to get home and pick up my book to read. This is a massive step forward for me, and has opened up a new world of reading and enjoyment. 

The biggest eye opener for me or for anyone reading this, don’t assume someone can read. Don’t assume that someone can see something the way that you do. Everyone sees things whether it be words or pictures ect differently. Take the time to understand a person as a whole, not just by their name and what they look like. Everyone has their own secret battles so be kind and give each other time. 

Fun in the sun 

So I’ve had my glasses for about three weeks now. So much has changed since getting my special lenses. I’ve been able to go outside sit in the sun and read a book, this is something that wasn’t possible before my lenses. Before the page was too bright and had dancing globes on it.

Not only have I been able to do that but also I’ve been able to read a book without the need for coloured overlays. I wouldn’t say that I comprehend it anymore than I used to without the lenses though. However I am enjoying reading and reading books that I either haven’t been able to or that I haven’t tried before. Reading used to be something that I disliked, having to re read everything to try to understand it and being a slow reader. 

Headaches are a thing of the past too, whether I am under bright lights or in the sunshine yes they bother me but not half as much as before. In fact I can sit comfortably in a room with bright lights for a while. 

I have noticed since having my glasses that my eyes are always wide open, doesn’t matter where I am. If I take my glasses off I instantly go back to squinting. So if you’re sceptical about the glasses and if they work let me tell you they do definately work. These glasses are life changing glasses. 

Irlen filters

I’ve finally got my lenses! I have to explain something about them. My lenses are quite dark, they are tinted to a grey colour with two shades of blue, this colouring helps my brain process the light waves that were ‘misfiring’. I however don’t see the colour when I look through them, I see everything how it should be. 


I have to wear my glasses all the time. They help with my light sensitivity so much. 

Before my lenses:

  • Headaches at work constantly 
  • Pressure in my head 
  • Unable to read black on white 
  • Heavy eyes 
  • Feeling tired more than normal 
  • Anxiety

After my lenses:

  • No headaches 
  • No eye strain 
  • No pressure in my head 
  • No squinting to see things 
  • Can read black on white without an overlay 
  • Reduced anxiety

The difference the lenses make straight away is amazing. Suddenly everything isn’t bright and looking at things doesn’t hurt my eyes or strain them anymore. Before my lenses I used to squint at everything so my eyes were never fully open all the time, now they’re open at all times and comfortable! 

I can now sit in the sunshine without it bothering me, I can sit in a classroom environment and not be bothered by the lights or the board. 

My new glasses have literally given me back a life, a life I didn’t know was possible because I thought what I was seeing,was how it was meant to be. 

http://smartdrugsmarts.com/irlen-syndrome/
The above link is a useful article on Irlen Syndrome. As in the uk it is not well known if you’d like to have a read go ahead. 

There is also a petition to get Irlen Syndrome recognised by the NHS here in the uk. If you could kindly add your name to it I would be grateful. 

https://petition.parliament.uk/petitions/178508
Every name added helps not just me but many others with Irlen Syndrome. 

Anxiety and Irlen

Everyone gets anxious I know that, but my anxiety is related to my disability. 

Everyday is a massive struggle, getting in the car and driving to work I still get the pit of the stomach sickey feeling. I know the root like the back of my hand and it’s pretty easy too. So to start my day I’m already anxious and it doesn’t get easier…typical day for me;

  • Will I be able to stay in the right lane or will I be drifting again? Depth perception is a bitch with Irlen
  • Am I going to be able to park alright once I get to work?
  • I get anxious wondering if there’ll be enough copies of the worksheets so I can have a spare one to read with my overlay. 
  • When all the lights in the staff room get turned on at the same time so it goes from nice and easy for my eyes to WOW turn them off! 
  • Not knowing where I am or what class I’m going to next always makes me feel on edge. 
  • Did I read that correctly?
  • The lights in here are too bright, the projector to so I’ll just look away and hope the tutor reads it out.
  • I hope I said the right thing, hell I’ll just worry about it the whole day! 
  • Am I going to get back home alright without sitting in traffic?
  • Do I need to get petrol,if I get it in the morning it puts my routine out of sink.

Just because I look alright sometimes I’m really not, but because I don’t want to be questioned I just get on with things. I muddle through and hope for the best. 

    See I like routine I do everything the same at the same times. I get up in the mornings at the same time, I leave my house at the same time and if I have to get petrol,or if I don’t leave at the right time I get anxious knowing that I’ve left at the wrong time. I know that on my root to work that 15 minutes earlier makes all the difference I avoid traffic and have a pleasant journey. I like to do things at the same times so I know what I’m doing and when, I like a set routine and if something changes I get worked up about it, it’s just who I am I can’t help it. 

    Once the day is done I’m so drained from the constant anxiety, the headaches and the eye strain that all I can do is yawn. Infact once I’ve gotten home I go to my room and lie down for an hour or so which relieves my headache and anxiety. 

    Sometimes yes everyday is a struggle but it’s a fight worth fighting for. Everyday is precious and what I want more than anything is not to let my disability rule me or my life. I am still me I just work harder at being me. Irlen takes many different forms not just reading anxiety is just one of those things. 

    To self check visit Irlen.com 

    In the dark 

    Irlen can be such a debilitating condition. It’s all to do with how the brain processes visual information. My brain cannot process different wavelengths of light like someone else’s brain can. 

    Irlen can affect you so much in many different ways in many situations. Most recently walking in the dark isn’t my friend. For one my depth perception is a nightmare! I can be walking on a straight path and I’ll be walking straight and no where near the road,next thing I know I’m drifting and I’m walking close to the curb. I honestly must look drunk when I’m out walking, but depth perception is one thing that can be altered thanks to Irlen. 

    Visually I am long sighted and have no vision impairments. One thing I struggle with is darkness. Traffic lights are horrendous at night.. so bright! For the visually impaired there is a button at the bottom of the light switch that you can hold. Once this starts to twist it’s time to cross the road. This means that I can cross the road without having to try to look at the lights. 

    What I see when I look at the lights in the dark is a big ball of light, not a shape of a man or anything that resembles it. I took the liberty of taking a picture on my recent walk. Literally how you see the light in my picture is exactly how I see it at night. I have to squint so hard to see a green man or a red man, the energy it takes to do that makes my head hurt let alone my eyes. 


    It has been proven that someone with Irlen who doesn’t wear Irlen filters has an overactive brain. It’s so shocking that my brain is literally running on empty all the time. You know when you are at nearly empty on the petrol gauge that’s what my brain is running on all the time. Take a look at the scans that are from Irlen.com!

     

    Next time when you are out walking in the dark look out for things that you think might cause stress to someone with visual perceptual difficulties. As humans one thing we are guilty of is taking things for granted and not really looking at the world. See how many things you can find that might affect someone like me and think about how you might be able to help. 

    Take a look at this informative poster about the signs of Irlen. I have all 7 of them signs featured in it but there are many more. It’s easy to see how difficult day to day life is for someone with Irlen. Everyday for me is a challenge different challenges present themselves everyday. It can be hard but it’s about finding ways to overcome these challenges within society. 

    Now days everything is bright computers, laptops, phones and more. We use these things every day, I have now ordered clings in my overlay colour to help take down the brightness on my phone and tablet because they cause me visual distress. Visual stress can be treated with the use of overlays, clings and Irlen filters. 


    Please visit Irlen.com for more information about Irlen and to use the checklists to see if you have any symptoms.