The Mask is Coming Off

This weeks post is from a young lady living with Asperger's Syndrome and Dyslexia. Olivia talks about her battles with sensory overload, how textures can influence what she eats and what clothes she wears, and other daily challenges that she encounters. It's the first time Olivia has spoken out about her Asperger's ,and she gives a great insight into some of the hidden difficulties that many people are not aware of, but are being experienced by so many people on a daily basis.

The mask is coming off

Hey! it’s Olivia here, I am 25 years old and I have a diagnosis of Dyslexia and Asperger’s. It’s my first time speaking about my Aspie, so thank you for reading a little bit about me 😊

My brain runs at 400% each and everyday just as standard, and that’s my normal. And I know that my normal, isn’t the same as everyone else’s normal, so I’ve spent years learning how to mask my true self from the world. It has been absolutely exhausting, being constantly aware of making sure that I act and respond in a way that doesn’t draw any attention to my neurodiversity. Well now the mask is coming off, I am unapologetically me.

The daily tasks that neurotypicals complete without any stress or worry, the daily tasks that are taken for granted, are really challenging for people like me. The noises, smells, lights, and unpredictability all begin to flood my brain as soon as I get out of the car. Sensory input and overload can be a challenge to process. When I got my diagnosis, it was a light bulb moment, I understood That’s why I don’t like this… that’s why I don’t like that…” For so many years I had such unexplained negative experience of sensory input.

An example of how sensory overload is a challenge in my day to day would be shopping…shopping can be difficult. The hustle and bustle of the crowds of people around me, the music or radio in the background, the crying baby in the next aisle the bright over head lights, the smells of the fish counter, bakery and butchers, the bleeping of the checkouts and in the middle of it, me trying to remember what I went in for in the first place. It's like the world is shouting at me. And then an unpredictable loud announcement over the tannoy …sets me on the path to going into crisis…I only wanted a doughnut.

Going into crisis (“Meltdown” if you’re not down with the lingo) is when I reach the point where my brain cannot process any more input, it cant compute any more information, it's at critical mass and It needs to blow off the chaos in my head. I need quiet, darkness and a soft, comfortable environment. Id love to have a tight hug when I’m in crisis, but because I can be physically reluctant to be touched or held when I’m in that place, I tell people to just be nearby and not to try and physically comfort me, soft words are helpful though. I will come out of crisis once my brain is quiet; I will be tired and won’t want very much human contact for a little while. I feel bad for going into crisis or even just struggling, I’m learning that it’s okay though…gradually.

Socialising is tough for me as well, basically because I don’t understand it. I have been so fortunate to have great friends, who explained things to me. The language, the appropriate responses, the slang words, and the way to conduct oneself in a conversation. But it's still so difficult! If I could avoid social situations, I would, but I have missed out on so many opportunities in the past that I am making myself step out. It's hard to explain why it's so difficult. I can only imagine that neurotypical people have this part of the brain that ‘just knows’ what to say, how to say it an when to say it…well for me that part of my brain is upside down, back to front and not programmed properly.

DANCING…DANCING…DANCING… I have tried lots of other activities growing up, but I have always come back to dancing. As you probably know many if not all people on the spectrum have obsessions (which are now called intense inters) and mine is dancing. Unlike others, I cannot tell you everything about dancing or have a favourite dancer. For me, it is the actual act of dancing which is my intense interest. Pre-university, I danced 12 hours a week; I then dropped to between 4 and 5 hours a week that was a big shock to the system. I managed to find something to fill the gap –artistic roller-skating (a bit like dancing on ice but on roller skates). Even now at 25, I go to a ballet class every week, if I had the money, time and clearance from my consultant, I would definitely dance more. Dancing is the one release I have each week. It doesn’t matter what has happened in my week or if my brain is struggling, dancing always helps. I cannot explain to you the feeling and release it brings. However, people around me have told me they can see it in my dancing and when I go to watch dance performances.

Routines can be a big element for someone with Asperger’s. For me, I have set mini routines I go through; for example, the order to which I get up and ready in the morning; within this routine, there are mini ones. For example, having a shower is in my routine, but within that part of my routine, I have to work head to toes. Shampoo; conditioner; face then body wash. This is the way I have to do it, every day, if I don’t then everything will be put out of sync and ill just feel “wrong”. While I can manage not having a wider routine of set working pattern and place; knowing the details of Who? What? Where? When? and Why? Is essential to me, managing a flexible weekly work pattern and coping when I am not at work would not really be possible without that information. Finding and maintaining a job has been difficult. What do I enjoy? What do I want to do? how many hours can I manage? These questions are ones that flow through my head on a regular basis. I still haven’t found the balance; I hope and pray one day I will.

Textures and the feeling of clothes have got to be just right, and what is right one day will probably feel completely wrong the next morning. I can try on 2, 3, sometimes 4 different outfits before I am settled ready for the day or change that many times in one day as the feel/texture of the clothes I’m wearing starts to get to me. Different fabrics can feel very different depending on how I am coping, a soft, fluffy jumper can become a vest of little pins or super scratchy very quickly for no obvious reason. This makes it very confusing and difficult to remember, which clothes are ready for the wash and which aren’t.

My biggest catch 22 is organisation. I have two very conflicting conditions, my Dyslexia brain shouts at me – “you can’t organise!” “what’s that? You don’t know how to do that!” Whereas my Aspie brain is on the other side shouting back in reply – “Wait! What!? Nothing has a place! What goes where?!?! I can’t process this!!! Help!!!” …And that internal battle is a fast lane to a complete shutdown of both my Aspie brain and my Dyslexia brain and ultimately, I will be sent into crisis.

Food…I have been very picky for many years, only eating a small variety of foods. When I did eat it was sparrow-like portions. While now I do eat more variety of foods there are some meals I just can’t live without. I don’t really enjoy food. It’s fuel, a necessity that I know I need to keep going. However, I like snacking. If I could snack my way through each day I would. This is similar to the way that the textures of clothes get to me. I would like to like soup, it smells good, but I can’t get on with the texture – its furry.

The best and worst part of the day for me has got to be Bedtime. I do love to sleep, but the challenge is getting to the sleeping part. It can be stupid o’clock in the morning and I’m still awake - why? I don’t know. I think running 10,000 miles per hour all day may make it hard for my brain to switch off. Then starts my brain - toilet? Hungry? Thirsty? Read a book? Write something? Watch something? And 9 times out of 10 (I doubt it that ratio, I haven’t worked it out yet) it’s my pyjamas. Yes, you’ve read that right, my pyjamas. Like I mentioned earlier I am very particular when it comes to the feel of my clothes, none more so then my pyjamas. So on nights where I can’t sleep, I will most likely change my pyjamas a few times to find the right feeling ones. Now, I’m ready I can sleep. But wait, there’s not much time left for sleeping so this affects the following day. And the cycle continues of being exhausted, facing a world that I struggle to understand and that struggles to understand me.

Living with Asperger’s and Dyslexia is all I know, all of what I have spoken about has been my normal for 25 years, and I have tried to ‘look normal’ but what even is normal? My normal is normal for me, your normal is normal for you and I pray for a world where being our own normal is normal for everyone. Please don’t judge or stare at a person who is reacting to the environment, social situations or food in a way that you don’t understand. We are all trying our best.

#Aspiegirl #Aspergers #Autism #dyslexia #MyStory