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My coming out story

My coming out story isn’t what most people assume it is. For me I never really came out as bi sexual, it was just something I was always open with and didn’t need a name or to be explained to anyone, I felt I owed no one an explanation. But with my autism things were different. Despite my usual approach of being myself and not stopping to care what anyone else thinks about it, I was afraid. I was afraid that people would treat me differently because I am autistic. I had known for many years, identified but diagnosed because I was a girl and “too intelligent” according to a few of the doctors.  I had advocated and educated others and studied autism for years, working on my own symptoms trying to pass as, well, typical. I supported my severely autistic brother and helped to care for him for years, and I never once let anyone tell me he was any less for his autism, so once I was well into my teen years I decided I should do the same for myself. I wish I could say it went as well and as accepted as my sexuality but it did not.

With my openness about my sexuality few people turned a hair, those who did never got to me because someone who cared about that was not someone I wanted in my life anyway. But when it came to my autism, people were different and some still are. People suddenly were telling me they “spotted it” and “suspected it” for years, when in fact they did not. What they meant was that I was weird so of course autism made sense.  People I barely knew were lovely about it, they treated me no differently and just said ” ah yeah that’s just what she’s like” at my quirks, but some of my friends were unwilling to still see me as me.

I had some people talk down to me, treat me as a child and even bang things to get my attention instead of just talking to me. I have had people treat me like I am over emotional, as though I am completely unreasonable before they even see me react to something. Suddenly my being weird wasn’t just me being me anymore, where friends had celebrated my oddness before they suddenly were just tolerating it. It was polarising and for me it was confusing. Nothing about me or my behaviour had changed at all, all I had done was put one word to describe myself and suddenly no one could seem to see me the same way.

My best friend of 7 years even attempted to “fix me” by calling me out on any behaviour she deemed too autistic, shouting at me that it wasn’t realistic and that it was wrong. She believed by pointing it out, as though I was a naughty dog, would teach me not to do those things. Funnily enough we no longer speak.

These responses threw me but eventually I saw it the same way I see people who don’t like the way I look and dress, the same way I see people who don’t like my sexuality. Its a part of me and a part I have slowly learned to love. So what if I talk too much and don’t like large crowds and live to a strange routine. Nothing is wrong with me or any autistic person, if someone else has a problem with you then it is their problem. I have a wonderful family and a wonderful boyfriend who loves me just the way I am, autism and all. So this is me, hopefully for the final time, coming out. I am an aspie girl. I am autistic. I am an acquired taste, don’t like it? Go acquire some taste, I promise I will still be here, I will still be the same old me whether you like it or not.

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Sensory Blocking

As many others on the spectrum one thing I have long struggled with is my senses. I have hypersensitivity to light, sound, touch, taste, smell and pain. Sometimes all of these things bombard me all at once and it can get too much to handle.I can start to feel sick or I can feel as though I am physically pained by my surroundings. Things get too bright, too loud, too much. Sometimes it takes a lot like a crowded shopping centre, or something small like touching velvet. I remain convinced velvet ,along with cotton wool, was created by God or Satan purely to freak the living hell out of those like me. As a high functioning aspie, you are unlikely to ever see me have a melt down over this, or even express my feelings outwardly at all. I am a pretty internal person with how I cope with my senses and even at their worst I can usually remove myself from the situation or try to block the senses out.

One way I cope with it is by blocking out my surroundings through fully giving all of my far too alert attention to one sense. Giving myself over to just one sense can be enough to block everything else out. This is different from distracting yourself with a stim, a stim can ground you and help make the senses easier, but any autistic will know a stim cannot block out everything. I would liken what I do more to meditation than a stim, I let go of seeing and feeling and being and just focus on listening to music from my headphones. I let the world fall away and the noise and bright lights of it all just fade. When I do this I can ignore the information that floods me, I can avoid all peoples stares and just pretend that I am normal for a few hours. For anyone who hasn’t tried it I really recommend it.

I am sure that when I do this on trains and let my eyes close I must look like I am sleeping, or pretty damn stupid but that doesn’t bother me. Shutting out the world can seem anti social and like I am giving up on trying to assimilate into normal social life, and in many ways that might be the case, but for me this can give me time to recharge and face everything new again.Its not too different from charging the XP on a video game character, when they tire and need to stop for a few seconds they can just recharge then be good as new.

Music is so important and I really respect those who can make it and are talented in that world. I have the musicality of a drunken cat, but I can still appreciate music and the passion in it.

Aspie’s have feelings

From the noisy red isles in supermarkets and the sudden lack in Facebook posts from those dramatic friends being rude to their boyfriends, its clear its almost valentines day. Honestly the hearts and flowers thing has never been my bag, my idea of a romantic film is Deadpool, Dracula,or my bloody valentine, but even my heart can thaw once a year and pretend I have those things called “emotions”.  I pride myself in finding thoughtful gifts for my better half and trying to maintain positive but there’s always someone out there ready and waiting to ruin this time of year for you.

For me its when people stereotype me as a classic Aspie girl. “oh autistic’s don’t feel love though?” ah, those wonderful people who don’t think adults on the spectrum are capable of romantic love ( you know who you are!). Any other adults out there on the spectrum reading this have most likely bumped into one of these people, note these also seem to be the same people who thing camels milk “cures” autism. At most other times of the year I honestly don’t give two minutes of my time to these people unless its to be sarcastic, but truth is when you are trying to figure out a way to be romantic it kinda sucks having people run around saying you are incapable of doing so. Or worse, acknowledging you as an individual have feelings but “you just aren’t that autistic”. Most people reading this will know just how often these get thrown about and just how annoying it is. Seriously how am I supposed to look pretty for my date if you are making my eyes roll so far back into my skull I honestly worry they won’t ever come back down?

For those who really struggle with the concept I am trying to portray here I will make it simple. Autistic adults are fucking adults. We go on dates, we fall in love, we have sex. I know, shocker right? But I have even met parents of autistic individuals who will debate this one with me. Being on the spectrum makes me no less capable of love. I have a heart damn it! It may be in a jar on my desk but its there. My personal lack of warmth is nothing to do with my illness, its because honestly as an individual just really don’t like mushy stuff. I prefer blood red to sweet cute red hearts and that comes from me as a person, not my autism. When it comes to romance it can be hard for some people to separate you from your illness. Everyone has something to say and everyone thinks they know autism, same way everyone thinks they’re funny.

Well there is an over used phrase which ,unlike the ones previously stated, is true and sadly still unheard by so many around us. When you have met one person with autism you have met one person with autism. Just because I am suddenly opening up to a softer side for the season doesn’t mean you need to comment on how I handle emotions. Those emotions are mine and I will express them anyway I damned well want.

I hope everyone out there has a great valentines day whatever you wind up doing, and to anyone who still thinks its okay to question whether or not autistic individuals have feelings based on how we express them, I suggest you keep it to yourself because seriously we have heard it all before.

Scars

Scars are usually a touchy subject for a lot of people, given that the majority of us have one or two. I remember when I was younger and I tried to talk to a friend about scars and she laughed and said “oh yeah! I think I have one of those”. Until that point I hadn’t quite realised how abnormal it was to have more than “just a few”. This talk had happened just before I turned 18 and at that point I was pretty damned pleased with myself that I would turn into an adult without a 3 figure number of scars. Sure 97 wasn’t that different to 100 but at the time it felt like it was a world of difference.Now my number is over 120, and at that point I relatively gave up on counting them. I keep a rough tab for no particular reason.

The main thing I have learned with talking to people about my scars when they have asked is that, well people seem to place a certain hierarchy on scars. “That’s tiny, that doesn’t count”, “That’s only a white one, I am sure that didn’t even hurt” or “You did that to yourself”, “oh god how did that happen to you”. People only want to take certain sizes, colours and causes seriously, they only have sympathy for something they deem to be worthy. If it was an accident, doesn’t count. If its self inflicted, its your own stupid fault. Surgery and animal related scars I have found tend to get the kindest reactions from people, but even then everyone has to put their own value on it.

The majority of my scars sit on my arms and hands, these ones are odd little shapes and most of them are white. I found out at the age of 12 a friend had avoided touching my hands because she thought I had a skin condition because of how they looked. These ones came from my brother mostly. He has severe autism and developmental delays and when he was younger it was hard for him to express his anger when upset so he lashed out. I have plenty of other scars on my legs from pure clumsiness and dyspraxia. Those ones are purple and bigger, mostly from falling over or slipping while shaving.Anyone with dyspraxia or hand tremors will know that shaving your legs quickly becomes a daunting task, getting through it without a single cut or graze becomes a huge personal success. After these I have my medium shaped scars, some on my arms one on my hand. Those are from my panic disorder. When I first had daily panic attacks I couldn’t cope, without noticing most of the time I would just start scratching myself until I calmed down. It was soothing weird as that sounds. Then there are my surgery scars, most people will never see those as they are pretty low on my pelvis.

All of these scars look different, feel different and have different stories behind them, and people will react differently to each of them. Some people will insult me, or pity me or completely misunderstand me based on these small coloured patches on my body. None of them are particularly big or noticeable but still people want to judge me by them sometimes, and that use to get to me. I use to wonder about which ones were valid, which ones aren’t, which ones should I be honest about or lie about and shouldn’t I just try to cover them? But what ever value other people put to a scar, or you put to it, its going to be there. Odds are it will fade with time but that can take years, so its much easier on yourself to learn to accept it rather than to fight it.

All scars have different meanings and stories behind them, and honestly there is nothing wrong with any scar.A scar means something bad happened and you made it, nothing more. There is nothing wrong with you just because your skin healed a slightly different colour, and that’s all it is, a different colour. If it has to mean anything let it mean you are interesting, that you have a story however big or small. Scars don’t have to have the huge negative connotations society and other people want to give them. My favourite reaction to any of my scars was my 4 year old cousin. When she was 3 she took my arm and twisted it around to look at them and after a while announced ” they are pinks?” and I just said “yes, pretty cool right?” Because that’s all they need to be, if you will let them. Pretty colours on skin, nothing more nothing less.

Trying to find normalcy

Normal isn’t a word that I have ever much related to. As a child I never felt this need to fit in that I know is hard for so many other children. I got picked on and called weird but honestly that never bothered me. I would much rather be me and didn’t see the appeal of trying to be just like everyone else when what everyone else was doing was,well, boring.

It was only recently I have wanted to “blend in”. There gets a point where being yourself is all well and good but you wish someone understood. I felt that a lot over Christmas and the new year. Its hard to open up to your friends and family when you know they don’t fully understand what you are going through much as they try, or when blatantly don’t want to try. I think we all have that relative that looks at us in such a way you know they are thinking “why can’t you just be normal?” and its heart breaking. As someone who has always been unapologetic to be myself it was strange to feel so isolated and not for anything I ever expected. I was use to it when it was because of how I dressed or how I acted or even my mental health.

When people hated me for the things I loved or accepted about myself I couldn’t have cared less. Its when the things we hate about ourselves isolate us when it really becomes difficult. Over Christmas I hated my body for making me feel so rotten. Over Christmas you want to be with your friends and family and to be happy and take a break from the usual issues you face, but for me they just got worse, I found myself just wanting to fit in with the fun, to not be in pain or struggle socially or be unsure in what to say. Its hard when the people you love are asking how it feels to be better now when you know odds are you are never going to be better.

I got back to university this week and was prepared for this to just get worse.I thought being surrounded by my peers would just remind me how wrong and broken I felt, until my housemate got home. She asked how I had been and I am a pretty open person so I just said “well they gave me anti depressants”. She smiled and said “Ooo which ones?” and we proceeded to swap notes on side effects and dosage as though we were discussing food or a TV show. It was such a small thing but moments like that just help to remind you that there’s always someone out there who gets it, and sometimes that just makes it all feel normal. And boring as normal is, it feels good sometimes.

Rock bottom

Lots of us know what it feels like to hit rock bottom. Its scary, defeating and just plain depressing. Whats worse is when you hit rock bottom and you just keep going and going and going and going. These are often the times we feel most alone and most scared, and always almost seem to follow some bugger saying ” Hey it can’t get worse” and when it does get worse they remind you ” hey it could be worse”, reminding you that things can and probably will get worse.  So for anyone out there who might feel just a little less along from hearing it, I am going to just blindly express my current experiences with rock bottom. I say rock bottom, I am pretty low and keep getting lower, if I really do find a “bottom” to this situation, I will let you know. Also – Trigger warning- I will be talking graphically about my anxiety and a tad of info my endo, so if regular period talk grosses you then seriously don’t read this on a full stomach though I won’t be getting graphic with this part of things.

Its hard to believe just a year ago I was doing amazingly, and honestly happier than I had been in almost a decade. I had a new boyfriend who was wonderful, had just gotten rid of all the toxic people in my life and I had been accepted to a brilliant university for which I just missed out on the grades. Things had never been so good, and clearly I opened my big mouth and said ” Roll on 2016!”. No stupider words were ever spoken. Honestly this is a year I feel we as a society just need to forget, never even mind our personal issues this year.

Just before 2016 started I started to get sick. Like really sick. I had a serious “period” for want of a better word that lasted over two weeks so I had to go to a walk in centre. This was followed by more doctors than I can count and not an awful amount of help. Since then I have had surgery, but things sadly could still get worse. Before the surgery I had a pain in one of my tubes and an ultrasound tech told me the tube looked blocked. Now the doctors are telling me its nothing, that I imagined this in my head and that I should take anti depressants. That’s right, because when you are not depressed and in chronic pain anti depressants are going to do so much good! Nhs logic for you there folks. Friends can see from looking at me that side is still swollen, and its bringing more symptoms than I should mention in a non endo focused post.

From here on out I just lost all faith in the chance I would ever get better and ,as anyone else with anxiety and panic disorder will know, doubt is just food for the paranoia fire in your mind. My anxiety made a comeback in a big way with my panic disorder reaping havoc right before my exams. My course work grades are constantly below my level from the pain and the anxiety, and I barely make it to my exams with this bloody fatigue, it almost feels like it would be worth dropping out all together. When these thoughts take over I honestly just get the urge to rub my hands together until the skin rubs right off, I wind up having to submerge them in cold water to avoid washing them raw.

But the thing is whether you are mentally ill, chronically ill or just going through a royally shit time, nothing lasts forever. I know right now my life is pretty messy, but it will get to a point where I can cope, and to anyone who can relate to this post- you are not alone. Life is horrible and it sucks sometimes, but I know it got better before, so it can get better again. So knuckle under until it does get better and try to steal as many good minutes as you can to make this time meaningful and to take back a bit of control. Doubt may be one of the things that can wash over your mind and ruin everything, but hope is what carrying you through.

Not today Satan, not toady.

To be completely honest I am usually a pretty high functioning person. High functioning autism, high functioning anxiety and when I got sick I was determined to keep this up. To repress all of the pain and the negative feelings along with my mental illness so that I could keep on being productive and break down when I had the time for it.

The thing is sometimes, even for those of us who strive to always be “high functioning” sometimes things get too much. For me that’s this week. This week my anxiety is throwing everything it has at me, almost as though its trying to force me into panic attacks every time I get a minute to breathe. My hypersensitivity is running wild with all the Christmas crowding and the loud noises and obnoxious lights everywhere. On top of all this my endo has decided this week, the week where everything else is messing up, the week I have to revise and do my exams, find an 80 hour placement and still do course work and try to be a good friend, this week of all weeks it has decided its just going to give me all its got. The bloating, the pain, the hormones, the morning sickness, the fatigue, every symptom I do not need right now it is giving to me at its worst.

Honestly weeks like this I want to just make a nest on my bed ( not going to lie that does happen on occasion…) and just forget the world exists for a solid month, maybe a year.But life doesn’t really care for our wants and needs. Our responsibilities don’t just go away because we are sick and tired, if anything they only seem to get worse when we are struggling.I know I am not the only one, I am sure this is going to resonate with a lot of people, because to be honest, sometimes life just sucks with no silver lining or end in sight.

For me this week will not be a good week, but I know I will get through it. If it takes all of my remaining painkillers and all the hot chocolate in the world by god I will get through this week and ace these exams. Life is going to keep on throwing its shit at me but I will sit here with my middle finger up shouting “Not today Satan, not today”.Its important to try to stay positive, what ever your own positive is.For me my positive is being sassy and sarcastic about my situation. God life is pretty bad right now but hey at least it isn’t boring. If this is a bad time for you right now, odds are it will be bad whatever your mindset about it most likely, a mind set won’t change whats happening to you but it can take away some of the pain.

It might seem hard to have a sense of humour about these things but once you find that funny side life doesn’t seem to bad. It often feels like chronic illness and mental illnesses are actively working against us so why not treat them that way? When I give up and sink into bed in the evening I am often found groaning abusive statements about my ovaries and general lady parts as well as my brain. Fucking cortisol, push me to the edge one more time cortisol!Just you wait and see what happens! Sure, if anyone saw me they would probably be more than a little concerned but hey it makes me feel better. If your positive is looking forward to tomorrow then you remind yourself every chance you get that tomorrow is a new day and that day may be all the better. If your positive is looking forward to something good then think about it every chance you get, talk about it, fantasise and put so much energy into bringing that bright horizon a little bit closer. If your a bit of a weirdo like me then bitch and moan your way through, complain about normal people things and exaggerate to make the narrative more fun. Out of hot chocolate ? That’s it shorter episode of game of thrones, Harambe died and now this? Clearly the end of the world. Shout abuse at your body and your hormones as though they were people, what ever gets you through the day.

Sometimes life is shitty and not everyone gets that sometimes there are just bad days and there’s not an awful lot we can do about it. I have a tiny Halloween devil on my tree because I swear and abuse a figurative Satan in my life so often, is it offensive? Probably. Does it make me smile? Definitely. We can smile, and sometimes that makes all the difference, so don’t you ever let anyone make you feel lesser for how you choose to get through anything. You got through. That’s what matters.

Handling winter exam stress

With Christmas exams it’s easy to feel there aren’t enough hours in the day. I mean sure this could be due to the fact that with the recommended time for coursework, tasks,  lectures and extra reading into account we are expected to spend 63 hours minimum on our degree at a time ( legal working hours in the UK are 48) and once you account for dyslexia, the fact that work is sometimes fucking difficult and takes a fair bit longer these hours can sky rocket so yeah it’s easy to feel their aren’t enough hours. Because there aren’t. BUT there are a few things we can all do to try to take the edge off, and no not alcohol ( looks thirstily at the vodka on the side…).

Sleep

It sounds dead obvious but do not revise into the late hours. Research say it doesn’t work, we know from experience it doesn’t work and more importantly, sleep is good! Its not working, go the fuck to sleep and stop cramming. Which leads me to the second point.

Don’t cram

Do.not.rely.on.it. Just don’t. Some last minute running over things won’t hurt but seriously do not leave this to the last minute. Please? For me? I mean I know with me writing it, your lecturer saying it, your mum saying, your roommate who who has to deal with you  when you wake up cranky and steal their milk ( legitimately by accident this time) telling you I know damn well you will still do it, I just need to add.

Eat

Sleep, eat, breathe, my god what an original out of the box list this is. But I do not mean pot noodle here. I mean you are walking to and from the library, and working that brain muscle constantly about this time of year, not to mention the calories you burn to keep warm by refusing to spend the money on heating. You need real food, yep even carbs. Just remembering to eat dinner and breakfast can really just make you that little bit more effective for the rest of the day.

YikYak
I know the once ever popular app kinda lost most of its following after that whole handle business, but there’s still that one person on there who has done no work all year freaking the hell out over these exams. Doesn’t matter which uni you go to or what time it is, they are there I promise. How does this help? It doesn’t but hey you get to see people have it worse than you, so calm down, at least you noticed we had exams. If you ARE the person on YikYak freaking out over doing none of the work then god bless you sir! You make me feel better about myself every time I check YikYak.

Mind Map

Or as we use to call it, brainstorming, but apparently that’s offensive, so mind map it is. My dyslexic brothers and sisters out their will know what I mean when I say these are a god sent. Long lists of notes all start to blend into one and there’s something about filling every corner of a blank page with colour coded linked notes that makes you think for just a few minutes you might understand some of the words you wrote. Even “Basal Ganglia” looks less threatening once it’s in pretty purple pen. Even if these aren’t your thing I would recommend you give it a try even if it’s just to shake things up.

Don’t stress the small stuff

Hint- it’s all small stuff. These exams for the most part are not worth a lot of credit. It’s Christmas for god’s sake, it’s practically December as students we should be worrying about budgeting for presents, what does your secret Santa even like, and how on earth your liver is going to survive the holidays. A few small exams, some last minute fixing of course work, it isn’t the end. Wherever you are in your degree it isn’t worth it at all. Get through it and take care of yourself. One grade can be re marked, re taken or even forgotten, so it isn’t worth panicking over, so as a collective let’s keep the panic to a minimum shall we ?

A quick introduction

By the time most of us get to university we feel as though we have finally made it. That all the hard work has paid off and we are finally ready to be an adult and live independently. We tell ourselves we are ready for the copious amounts of drinking, the stacks of work and the crippling financial situations.

For me it was no different. By the time I got to Reading university I felt I had made it, that I finally got my life plan on track. I had spent the past year battling and beating my panic disorder ( or so I thought), I had learnt to cope with my dyslexia, my Asperger’s and well most parts of adult life. But then life doesn’t give two shits about our plans. By Christmas break, about this time last year, I took a huge step back. I was in constant pain, had seen more doctors than friends in the course of a few months and had no idea this was about to be the new normal. Not that I knew it at the time but I was just getting my first symptoms of endometriosis.

Endometriosis, for those of you lucky enough not to know, is in short hand where Satan himself moves into your pelvic area and while you sit there in pain you look up wondering which god you pissed off and how you can get back on his good side. This triggered my panic disorder and more stress than I needed whilst trying to sort out course work and exams.

Since then I have all but bounced back with a new determination to put this struggle to good use. I have picked up more coping mechanisms for pain, stress and mental illness than I have time to use and more self care routines than hours in a given day. As people we tend to neglect our mental health, and life tends to take its tole pretty harshly.

As a person I tend to be pretty open and blunt when it comes to my own experience with the more taboo parts of life,I never saw the point in saying your fine when you obviously aren’t. Nice part of this is you always know where you stand with people, and you can usually give better advice from the experience, and beyond advice sometimes our struggles are funny and we need to laugh at ourselves a little bit otherwise whats the point.

So from my blogs you can expect a whole lot of bluntness, honesty, humour ( sometimes a little on the dark side) and some tips and advice on how to cope with your own problems. So if that appeals to you please feel free to stick around, if not well find something you do like and read that!