Personal Stories, Autism

What the World Doesn't See - #TakeTheMaskOff

As someone who is #ActuallyAutistic and neurodivergent, I had no idea how much I saw the world differently and how much I had struggled over the years until I got my chance diagnosis a few months ago. I always felt like I was wading through treacle and I didn’t understand the world and what my place in it was. So, I changed myself to become what I thought was expected of me and what I thought others wanted me to be.

Only my now husband, who I met in 2002 through my ex-husband as they used to work together, got to see the “real me” from very early on. We were friends for many years before we became a couple in 2012 and subsequently husband and wife in 2013, and no matter what I’ve shown him and what things I shared with him he took it all in his stride and didn’t walk away from me.  That’s a huge achievement on his part.

He gets to see the things I struggle with daily, yet he still chooses to stay with me, which is incredible.  No-one else sees the constant battles I have with myself – they just see me and assume that I am “normal”. But this couldn’t be further from the truth.

They don’t see the internal conversations I have with myself all the time, the endless hours I spend rehearsing conversations and situations in my head, so that if they do become reality I am better prepared for them. One of my worst nightmares is being asked something that I am not prepared for, or for a conversation to go a way that I haven’t rehearsed in my head. I will spend hours going over all the possible permutations of a conversation, just in case.

They don’t see the meltdowns I have inside when I am in a situation that I can’t cope with. Instead I just stop, take several deep breaths and allow the struggle I have inside me to dissipate, never to come out and be released. Sometimes I let it out and allow myself to have a meltdown, but ONLY if I am on my own. Not even my husband sees me have these meltdowns if I can help it. A few weeks ago, my husband was going through some old home video footage shot by my Dad when he got a camcorder in the early 1990’s. On camera for all to see was me, age 18, having the biggest autistic meltdown ever, just because my Dad was filming me when I was trying to do something simple and grate some cheese. I just couldn’t cope with it, I hated being filmed then and I am not a big fan of it now, although I have learnt to try and cope with it better.

They don’t see how much I have to control my stimming, and how much I have to ensure my facial expressions and body language don’t give away how I am really feeling inside.

They don’t see the fact that I suffer from impostor syndrome, always feeling that I am not good enough no matter what I do and the intense fear that I will be found out as a “fraud” any second (more on this in another article, hopefully coming soon).

They don’t see how much I sit on the side lines feeling as if I am on the outside of situations but looking in, and how much I desperately want to take part in discussions, debates and conversations but I just can’t put my head above the parapet and have a voice. When I do, it feels completely alien to me.

They don’t see how overwhelmed I become in large crowds, at gigs or anywhere where there is lots of loud noise and bright lights. I used to be able mask this quite well and often went to gigs by my favourite heavy metal bands. The older I’ve got the harder it has become to deal with those kinds of environments, and I no longer go to gigs anymore.

They don’t see how making eye contact is one of my biggest nightmares, about how I struggle to do it. I  have to look at an imaginary “dot” in the middle of everyone’s forehead to make it looks like I am looking at people right in the eye.

They don’t see all the questions I constantly ask myself like “Why does no-one like me”, “Why can’t I be more like other people”, “What is wrong with me”, “Why do I have such strange interests” and “How can I change myself to fit in and be part of the crowd more.”

They don’t see how much I kick myself inside whenever I say something that I’ve already said not just once but in many cases several times. I berate myself or this a lot, it still happens every day and my husband truly hates it. I wish I could get him to understand that I don’t do it on purpose, I don’t have a memory problem and it is part of my DNA because I am #ActuallyAutistic.

These are just a few of the things that people didn’t see, the things that I keep closely guarded and close to my chest. The things that I am slowly starting to show others, however hard it is after all the years of masking them.

I hope that by sharing these things some of my family and friends will read this and begin to realise and understand just how hard the silent battle has been for me as someone who is #ActuallyAutistic. Hiding these battles every day is exhausting, and I’m sure I’m not the only person who is neurodivergent to have these, day in and day out. It is no wonder I have suffered from autistic burnout on numerous occasions over the years. These were times that I thought I was just depressed or suffering from anxiety, and maybe there was an element of that, but I know how it was autistic burnout for sure.

Society and employers need to educate themselves about those who are neurodivergent and about the fact that many people like me struggle every day silently. I’m sure that if I had got adequate support and understanding from some of my previous employers I could have reached my full potential long before now. Unlocking this and educating society and employers is key to having a fully inclusive society.  Only when people like me who are neurodivergent are supported properly and given a platform that allows us to be our true selves without fear of reprisals, can we then reach our full potential.

I hope I get to see this come to fruition in my lifetime.

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About Rosemarie Simmons

Rosemarie Simmons was diagnosed as autistic in 2018 at the age of 44. Neurodivergent & proud, she uses her experiences to raise awareness of autism & living in a world that is set up for neurotypicals