Holidays, stimming and envy!

Today is not a good day. I don’t understand people who say that autism is part of them and they’d never change the fact that they’re autistic. I kinda understand that it’s hard to differentiate which parts of our personality are ‘us’ and which are there because of autism. However I swear I would trade my autism traits for part of my personality any day.

I’m exhausted by it. By the sensory overload, the anxiety, the physical symptoms. I’m pretty good at reading people now so I guess I can deal with the whole communication and social issues, but god, the rest of it I would literally cut an arm off to stop being like this.

Holidays are out of the question, (I’m just feeling too fragile at the moment to actually book something, plus with the heat at the moment I doubt we’d enjoy it) but today I booked an overnight stay at legoland as my daughter loves Lego, and we have a merlin pass (usually used at Alton Towers as that’s pretty close to us and a familiar place). A moment of bravery outside our comfort zone that I’m almost immediately regretting.

Now I’m already feeling sick and anxious about it. So much so that’s I’ve googled the cancellation policy and wish I’d taken out the cancellation waiver insurance. I could cry. I’ve just been on Facebook and seen friends with their families on holiday at the beach, in London sightseeing and now I’m feeling so low. It’s so EFFORTLESS for them. It all looks like something you’d actually be excited about, yet all I feel is that their fun lives are impossible for me to replicate. That what they’re doing would just make me ill.  I went on a short break a few years ago before my daughter and I were diagnosed and spent three days feeling ill with flu like symptoms. I now know it was just to anxiety and sensory overload, almost like adrenaline fight/flight fatigue. I’m lucky that now I know I can put some steps in place so that wouldn’t happen again (not as severe anyway), but it all just seems so overwhelmingly difficult when it really shouldn’t be.

I have actual envy of my friends that all they have to stress about is the money to pay for it, booking the time off work and making sure their passport is in date. Oh how I wish I was normal (and I say that very rarely!).

I know that the night before I won’t sleep due to anxiety. When we are there I won’t sleep as I never sleep the first night in a strange place, I will be lucky if I get three hours of that half sleep, where you close your eyes but can hear what’s going on. I stress about whether I will be able to eat or will the anxiety make me feel constantly nauseous, and now I’m vegan will there actually be anything I can eat? I pray there are chips 😂. The car journey will be ok as long as there are no diversions to send me into a panic. I’m googling it like crazy so I know what the room is like, and to get a feel of the place by watching videos of it on YouTube. Maybe it would be easier if my daughter wasn’t autistic too. I’ve already booked the ride access pass so she doesn’t have to queue (it’s too overwhelming with so many people close to us we would both find it extremely stressful).

Last time I went to Alton towers, and in the first night after a really stressful day (the motorway closed whilst we were on it so we ended up stranded on the motorway for hours and had an awful detour) for the first time ever I allowed myself to stim. (Stims are things that calm us down, you may see autistic people flap their hands, tap their foot, jerk, make weird movements, make strange sounds). I never realised that when I’m mega anxious (like when my daughter is sick) I pace up and down and shake my hands. My mum has never seen me do it until then. I used to do it without realising but not in front of people. It seemed to help a bit, like I had nervous energy and it let it out. It was weird for me to consciously allow myself to do it though. I don’t think my mum understood what was going on until I explained the stress of the day meant I felt sick and was having a panic attack and I needed to soothe it somehow. She still looked at me gone out and told me I was exhausted and needed to just ‘sit down and sleep’.  As I’m learning more about myself and autism I realise that there’s so many behaviours I have amended to fit in. So many things I now do and think about that are so easy for others. It makes lots of things as I grew up make a lot more sense.

What does help is to have ‘a plan’. An itinerary. This helps in every day life, to do lists really help me feel positive and get stuff done, and at the end of the day I feel ok rather than exhausted through the guesswork of the day. I think that’s why when I went to NYC it was (almost!) a stress free holiday, as we had so much sightseeing to do we had a really rigid plan to fit it all in. That is really good for me. So before Monday I will create a plan of the attractions and rides MiniMe and I want to go on and which day we will do it on. Hopefully this will calm me down a bit!

Let’s hope I continue to be brave, I know it will be a great short break I will REALLY enjoy. I just hope the experience is way better than the stress and anxiety surrounding it to balance it out.

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Control freakery

I’m a control freak. I think it’s an inherent part of being Aspergers. There’s a need to control as much as possible, with the simple reason to reduce stress and anxiety.

Being a control freak sometimes encroaches on other people, but I never want to control others or change them in any way. In most ways I’m really non judgemental and open to people living their lives any way they want to, but if it effects me then I need to be in control. So never put on a surprise party, that would be my worst nightmare! Even little things like at work if people put pasties in the chiller in a different place to usual it stresses me out. It sounds a bit like OCD, but it’s very different. I like things s certain way and it causes me anxiety if they’re not like that.

I have to drive, so I’m very very rarely a passenger. When organising meet ups or dates it can only happen if it’s a place I know and comfortable with.  I always need to know what’s going to happen.  Booking holidays is hell. I have to do tons of research on the place I want to go on holiday, find out absolutely everything there is to know. I’m a good researcher, and in some respects training to be a journalist stood me in good stead, having hyper focus on a specific thing and spending many hours scrolling through and reading thousands of reviews is OK. I guess that’s one positive to aspergers! Most people would get bored after five minutes, I could lose hours very easily on the internet looking up places and reading stuff, although making a massive decision on where to go rarely actually happens. So if you ever have some mind numbingly boring information to go through (tons of pages to get to find one thing), as an Aspie! We love that stuff!*

 

Making a decision is so hard, maybe because if the place I end up in doesn’t look like the pictures, the room or experience is different to what I’m expecting then my anxiety goes through the roof and the holiday would be ruined and I’d be so on edge. Plus holidays are scary because everything is unfamiliar, the food, the place, the language, plus the risk of being ill on holiday is increased, and all the things that comfort me (home, familiarity, routine) aren’t available.  It’s a shame and limiting, as I really want to see the world and I love seeing beautiful places! Ive got quite a bucket list too! I’ve been to New York twice, and I think that was the least stressful holiday despite the fact it was my first time on a plane (7 1/2 hours first flight, baptism of fire given we almost had to divert to Texas due to horrific snowstorms!). This was the least stressful holiday probably due to the fact that food was available identical to at home (mcDonalds!), it was easy to find my way around due to the grid/block system plus having watched TV and films is just like being on a set! Plus having done so much research I kinda had an itinery for each day to get all the sightseeing in, and so even new places looked familiar!

I know I’ve mentioned it before in a previous blog, but I suffer from emetophobia, fear of being sick/seeing vomit. Having spent the last year since my Aspergers diagnosis thinking about how Aspergers affects my life I think I’ve figured out the reason for my emetophobia (which I’ve had since at least 4 years old). I think that’s about control too. The thing about being sick is that sometimes it comes on very quickly, giving little notice. Now to someone that likes, or rather needs, to be in control and is unable to do anything about this awful feeling that’s happening to my body, being sick is probably the most out of control I ever am. This is another reason why being away from home is hard for me. What happens if I’m sick away from home? How will I cope? None of my strategies (being at home, familiar place, alone, drinking tonic water) are possible. This makes going anywhere difficult!

Control is comforting, but it can make relationships difficult. I can’t say that it’s ever been an issue or the reason for problems I’ve had as a couple, but maybe as im only really figuring myself out over the past year maybe that’s wrong. You’d have to ask my exes! I guess now I’m more aware of why I am the way I am, and the reason I do things I can be more aware of explaining my needs and the reasons why so am in a better place to be in a relationship now than I ever have been. OK, So I’m a control freak, but it’s not about controlling people but about limiting anxiety and knowing what will happen next, routines and familiarity, so I can enjoy new experiences and get the most out of my life.

*disclaimer: once you’ve met one Aspie you’ve only met one Aspie, every one is different!

Literally….

I wasn’t going to do another post this week, but then something happened yesterday which I thought was a perfect example of Aspie life.

Yesterday I had to go to hospital, nothing urgent, just some tests. Now it’s only because these tests are for cancer that I went (don’t panic, it’s not likely but needed ruling out). I hate hospitals with an absolute passion, mainly as I have a severe full blown phobia of vomit. So seeing people being sick or catching a bug myself sends my anxiety through the roof, to the point where I was close to being hospitalised as a teenager as I weighed 5 stone due to being too scared to eat in case I was sick (they thought I was anorexic until I pointed out anorexics ‘safe foods’ wouldn’t be chips and crisps…!) Anyway… other than that hospitals are a nightmare for sensory overload. Unfamiliar places, smells are strong, waiting about in crowded waiting rooms and no WiFi to keep me occupied, echoey corridors, bright lights, lots of noise and hustle and bustle. In short every Aspies worst bloody nightmare.

So I went, dragging my mum along with me. Mum gets dragged along to many places as going anywhere unfamiliar is only possible having someone with me. I’m not sure why, it just gives me a fall back sense of security having someone with me if something goes wrong. So for example I would go into full blown panic and go straight home and miss an appointment if I can’t park in the car park as I’d ‘freeze’ and flee. So we spent 25 minutes driving around the car parks trying to find somewhere to park, anxiety at the paying machine (there’s two next to each other? Which do I use? Are they both working or is one replacing the other? How much do I need? Right money? Does it accept new coins? Panic). Then the stress of finding the right reception desk to come to. Give receptionist my letter (it’s easier than trying to figure out in my head what to say! Do I say my name or what I’m there for first? Please don’t ask me a question… oh god she did. My name? It’s on the chuffing letter, why do you need that again? Date of birth? Oh, do I say the fifth or May for the month? Do I say 1977, or 77?)

The receptionist books me in, hands me an envelope and then tells me to ‘follow the yellow line to the end and pop it in the basket’. Ok, I can do that! Relief. Until I get to the end of the line. A few yards ahead of the line is another reception desk. On it is a metal letter holder thing that says ‘put your ultrasound cards in here’. Except it’s not *right* at the end of the yellow line. At the end of the line is just a space. There isn’t a basket! The metal thing is more like a letter cage you get attached to letterboxes…. it’s not a basket! I don’t have a card. It’s an envelope (which to be fair probably has a card inside it but I didn’t see what she put in it!) so I freeze. Do I put the envelope in this cage thing and hope I’m not doing the wrong thing? Am I missing a basket from the end of the line? Maybe they’re emptying it and I need to wait? Try to think, am I even having an ultrasound or MRI? Erm… mum takes the envelope and puts it in the cage thing saying that’s ‘obviously’ it. I hope she’s right as it wasn’t obvious to me at all. Generally people with autism take things literally, and I guess that’s one example. I never would’ve realised that before my diagnosis. Mum would’ve been annoyed at my ‘dillydallying’, and I would’ve felt stupid. At least now I know I’m not stupid and can analyse these things afterwards.

I then go in for my scan. The room is dark and it’s just me and the radiographer. I expected a female due to where I’m being scanned so am thrown a bit (not that I’m bothered about what sex they are as long as they do their job, but I have an image in my head of what it will be like before I get there and it’s now different to that which puts me on edge). I’m unsure if I’m meant to get in one of those horrific gowns or not. Luckily the radiographer is great. He tells me to lay down on the couch thing, lift my top to ‘there’ points to his chest (great! Specific instructions! Love it!) and tells me exactly what’s going to happen next. Relief. Or there would be if the light that’s shining on me wasn’t burning my retinas and giving me weird dots in my eyes.

Then panic as he starts scanning my stomach and kidneys. I panic. I freeze. The machine bleeps as he clicks and scans. Er… my ovaries aren’t there! What’s he doing!!? I have to say something but don’t want to look a fool. Has he got someone else’s notes? I’m pretty certain I know where my ovaries are but what if I’ve got to 41 years old and been wrong all this time? I say I thought it was going to be on my ovaries? He then states they’re doing a full MOT on me and scanning all my vital organs. Oooh. Panic over (kinda). Just want to get out of here. He then says, now, turn to your left. I move my head. He waits. Ooooh he meant move my body too. Didn’t get that. You see if you infer something I will miss it. I can find an innuendo out of nowhere, but nuance = no chance. Be explicit (ooer! 😂). Give detail. Make it obvious!

So there you go, aspies take things literally! So don’t ever tell us to put our coat in the loo. Unless you want a blocked loo! X

 

The Journey Begins

Thanks for joining me!

That’s what WordPress helpfully suggested as a starting point to this first blog. It’s a bit weird to think someone may be reading this shortly. Although I guess I’m not really doing this for you. I’m just getting it out of my head, a bit like a diary I guess.  Maybe if I write enough it will become the start of an Aspergers book?  If people stumble across it and it helps them understand Aspergers in women a bit better then bonus.  If I become rich and famous as a blogger then woo! Go me. 😄

If you’re reading this first blog post it’s probably because you’re a friend that I’ve suckered into it 😂 Maybe you have a family member/child on the Autistic Spectrum and would like some kind of glimpse into an autistic world? I hope I deliver! No pressure then. You know we are all different, right? Aspergers in girls/women is different to in blokes apparently, so no, I’m bugger all like Dustin Hoffman in Rainman as I’m totally shit at Maths, nothing like that nerdy monotone Doctor in The Good Doctor TV show on Sky, or the singing kid in the A Word .Or maybe you’re just reading this because you’re  a nosy sod…. 😝 (being an Aspie doesn’t mean we can’t do sarcasm btw… you’ll figure that out pretty quickly, sarcasm is a second language to me. To speak anyway… taking it from others is a bit harder) but I digress.

So why the name of the blog? The Masked Aspie. I guess that’s two fold. Firstly I’d like this as a kind of anonymous blog. I guess I’m used to sharing my story with the world on my Facebook, with my work, my ridiculous life, even really traumatic things that have happened… but the thoughts in my head, unedited and raw for all to see? Makes me pretty vulnerable. I’m learning that not everyone has a kind heart like I’d like to think. Friends become enemies. Backstabbing and using information against someone for personal gain seems to be commonplace in the world, so I’d rather not give people bullets to fire at me if I can help it. I have a story to tell though, and I guess if you’re one of the few that know me you won’t see me as any different to the funny, slightly weird woman you know and love anyway. If you’re a total stranger, then f*ck. oh boy are you in for a shock. I swear a lot btw, so if you’re not keen on opinions scattered  with the F word, click away now.  I will be honest, it’s going to be raw and unedited, but cathartic for me and hopefully insightful for you.. or maybe you’ll just be grateful you’ve not got my head on your shoulders! It’s pretty exhausting.

The other reason for the name ‘Masked Aspie’ was because the mean reason my daughter didn’t get diagnosed as Autistic (Aspergers/Aspie) for so long was that she became really good at ‘masking’ or copying neurotypical (NT) behaviour. Putting on a mask to blend in and look like everyone else. Learning strategies to cope with things that don’t come naturally like they do for everyone else. An NT is what you class someone with a ‘normal’ non autistic brain, just in case you weren’t familiar with all these acronyms. I wasn’t until just over two years ago, when it became increasingly apparent my daughter was a high functioning autistic.  So I googled. A LOT. I learnt all about autism. I then went into her autism assessment and got totally blindsided to be asked had I ever considered getting a proper diagnosis myself? Er.. I only answered your questions cos she wouldn’t talk!! Ok, so I answered almost every question with ‘yes but I do that too’ and ‘could she just do that because I struggle with it?’

I wasn’t ready for it. But wow, how it all made sense! Strategies I’d figured out over 40 years that NO-ONE has picked up on. Not my mum who used to be a teacher, not my friends, and certainly not me! Things I’d taught myself that I just thought was what everyone had to do, it suddenly became clear that others do it naturally without thinking. I never realised! How lucky are they to just be and do it effortlessly!! For example you breathe without thinking about it. Now think about breathing. Still the same result in the end but one takes actual thought and effort, the other is effortless and just happens! That’s what it’s like for me.

I have a mask that I never even realised was there. Ok I realised I adapted my personality depending on who I spoke to, so when I worked on the till at Poundstretcher I called people ‘love’ and upped my Sheffield accent. When I worked for Ann Summers and did a pub party I became loud and full of banter capable of scaring even the lairiest of blokes to shut up with just one look, a few words and a crocodile posing pouch.  When I’m on the radio my telephone voice comes into play and I try not to swear.  Everyone adapts depending on the situation. I just never realised before how much effort it took just to be ‘me’ every day though. How this wasn’t what everyone else did! The reason why so much has happened to me, and why!!

Things like having to think about looking at people when talking to them. Eye contact. I never realised until diagnosis day that people don’t usually have to think about it. Me though? Urgh. Constant “look at them, look away, look back, am I staring? Is this ok? I’m feeling weirded out now.. can I look at their nose? This is hurting, their eyes are burrowing into me. Grim. Uncomfortable. Look at their monobrow instead. Are they noticing? Ok shit, they just asked me something.. quick catch up with the words they were saying! Ok you can look at your hands, or ooh what’s happening over there good distraction, right better answer the question it’s ok to talk and not look at them if you’re busy’. Etc etc

So that’s why the blog name, the ‘masked Aspie’.

Enough for now. Hopefully you’ll stick around. Hell, hopefully I will too!

 

 

 

 

Good company in a journey makes the way seem shorter. — Izaak Walton