So it's true... I am the WORST blogger ever! Every week I think
'ooh I really MUST post a blog' but it never happens. When I got back from Malta (over two months ago now...) I was determined to write a big post showcasing some of the snaps I took during my trip, but it never happened. And now it's been so long since I was there, i'm not sure if there's even any point in doing a blog about it?! Is there? I did take some pretty lush photos so if you'd like to see them...
Anyway, April is
Autism Awareness Month, so I thought i'd take some time to talk a little about my own experience with Autism. This is probably going to get quite deep at times so if you're not interested, just close the page now, I won't mind. Oh and i'll probably ramble on quite a bit as well.
I'm at a point in my life where most, if not all of my close friends and family are aware of my diagnosis. They all accepted it pretty well, acknowledging the fact that it doesn't change a thing and that i'm still very much 'me'. But in recent weeks, a few old faces from my schooldays have popped up and i've been torn over whether or not to tell them about it. When you haven't seen someone in years and they ask you what you've been up to, it seems a bit weird to just blurt out
'oh by the way, it turns out i'm Autistic!'. So I simply haven't said anything about it.
I only found out that I even had Autism last August when I was officially diagnosed with High Functioning Autism aka Aspergers, it's been almost 6 months since then and i'm still learning what it means to be Autistic. If you missed my post about it last year you can read it
HERE.
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dressed in Blue for Autism Awareness Day on April 2nd |
Recently I started volunteering at the Family Library in Douglas (where I worked for 8 months between 2013-2014) on Wednesday afternoons. I spend most of my time there processing new books to go out on the shelves, including many from the brand new section of books dedicated to Autism.
Going through the piles of books, I was impressed by just how many there are readily available on the subject of Autism and its many varying areas of interest. I scanned in books about dealing with daily life, teaching children with autism about puberty, books on dating advice for women with aspergers (I should probably borrow that one...) and even picture books designed especially for young children on the spectrum.
It really got me thinking about what i've already learned, and what I still don't know about in regards to my own diagnosis. Most days my experience of living with autism is pretty much non-existent, in the sense that I don't even notice a difference. Most of the time I function well enough to pass as 'normal'. I'm fortunate that i've developed a good ability to 'read' other people, I think this helps me to blend in more and not seem too 'weird' when I talk to people. But then some days it becomes blatantly obvious that i'm not as good at dealing with certain situations as most 'normal' people. I know, I know, there's no such thing as 'normal' but in this sense 'normal' simply means a neurotypical person, aka someone not on the spectrum or not dealing with a form of abnormal psychology (personality disorders etc).
When i'm out and about I can 'play the part' fairly well, if you passed me in the street you probably wouldn't give me a second glance or suspect that I was 'different', but that's only because i'm a good actress. If you know me well then you're probably aware that i'm not great at dealing with things that I really don't like. It's not as easy for me to shrug things off or pretend that everything is fine when i'm falling apart inside. Sure I can pretend and play the part, but sometimes the mask slips and the real me is left standing there shaking and trying to remain calm. That's often what it feels like, wearing a mask every day and playing a part in a play.
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my kind of mask... |
You see the thing is, I don't go out very often. I leave the house maybe 4 times a week tops, usually for swimming on a Monday, volunteering at the library on a Wednesday, visiting my god-daughter, her sister and their mum on a Thursday, and then teaching a craft workshop at the library on a Saturday or seeing my friends in Town. Other than that I occasionally go to the cinema in the week or for walks at the weekend, but most of the time that's it, that's how many times I leave the house and it's never for more than a few hours.
It might seem odd to you, i'm sure you leave the house so many times a week you don't really keep track; for work, errands or social activities. The truth is, if i'm 'forced' to go out more than this for whatever reason, it often drastically affects my mood and energy levels. It will probably sound extreme, but if I have to go out for more than 2 days in a row, i'm a wreck. By the 3rd day, i'll be so tired and irritable that there's probably not much point in me leaving my room let alone going out and 'doing things'.
When i'm at home it's not even an issue, i'm just 'Jade', my parents are
used to my particular peculiarities and foibles. Most of the time i'm
too busy to think about whether or not I should be going out more or
being sociable. I work every day from home, in my 'corner office' (in
reality a corner of my bedroom next to a window with 3 desks piled with
materials, paint and envelopes). Running my online business is a full time occupation; everyday I have orders to pack, commissions to work on, emails to respond to as well as the constant ongoing promotion of my work online and overseeing the manufacture and launch of brand new products. When i'm at home I get a lot done, because i'm left to my own devices, I can spend the entire day in my room listening to opera while I work on my 'brand'.
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a standard to-do list while i'm working from home |
As long as i'm at home it doesn't matter that I hardly ever go out or see other people. To be perfectly honest, it doesn't usually bother me, after all it's completely 'normal' to me, but sometimes I stop and think,
'why am I like this? Why can't I go out everyday like everyone else?'. Most people work full time, they're out every day working 9-5, then they might go to the gym afterwards, or out for dinner/drinks in the evening, they could have children to take care of, ultimately they might spend every minute of the day in the company of other people. This seems like an impossible scenario for me. If I spend too much time around other people, even people I love, it completely drains me. Even one full day out of the house is a trial, even if it's for something good like a wedding or party, by the time I get home i'll be exhausted and will probably require the following day in to recharge, by myself of course.
Any form of long-distance travel really takes it out of me, to the point where I need almost a full day to recover. And I don't just mean long-haul flights (which to be fair, take it out of everyone) even a few hours flying to somewhere in Europe or a 3 hour boat journey to the UK will tire me out, i'm like a toddler! I truly envy people who can wake up, get on a plane or boat to travel somewhere, then arrive and just go straight to a meeting or event. I probably couldn't do this, which certainly puts an end to my dreams of being a jet setter, traveling the world and having adventures. My version would be more like traveling the world and sleeping a lot.
I don't deliberately avoid any and all events that I know will be tiring for me, i'll assess the situation and if I think it's worth the exhaustion afterwards, then i'll make an effort and push myself to go. You're probably thinking that I sound rather selfish, but it's difficult to explain unless you've experienced it yourself. Contrary to misconceptions about people with Aspergers, i'm not emotionally 'dead' or unfeeling, and even if I really don't want to do something or go somewhere, most of the time I will, because I know that it's important to someone else (for example, a birthday night out or a christening).
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spending time with my cousin Sienna, always fun |
I used to think this was just a general 'introvert' thing but i'm wondering now if my method of 'avoiding most social situations because I find them draining' is more of an Aspie thing. From what i've read, most people with aspergers feel the same way I do, it's not that we hate social events, it's just that they can be really, really tiring for us. On the contrary, I love seeing my friends, visiting my family or even on occasion, meeting new people. But during these situations I have to concentrate hard to make sense of the social cues and constantly pay close attention to make sure I don't accidentally come out with something too inappropriate during a conversation.
It's not that I don't have a verbal filter, it's just that sometimes I don't realise that what i've said out loud might not be ideal or appropriate until after it's too late, unless i'm making a serious conscious effort to censor or double check myself. Imagine carefully thinking through every word before you say it. You might think before you speak but an aspie will think, double check, alter, rewrite, verify then cancel and probably just not say anything. And like I mentioned already, after a few hours, it can be utterly exhausting.
This is the area where I struggle most to be 'normal'. Most of the time I can pretend, I can slap on a smile and say the things I know i'm 'supposed' to say, but I cannot train myself to 'snap out of it' and just magically transform into a social butterfly. I'll be a socially awkward caterpillar forever, and you know what, i'm perfectly fine with that. I just wish that sometimes it wasn't such a trial to get through a normal day out of the house.
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advice we should all take |
I'm coming to terms with the fact that it's just part of who I am, I can't change it, and all the acting lessons in the world won't make me any better equipped to deal with day to day life and dreaded 'small talk' (seriously, to a person with aspergers, small talk is the WORST!).
Since I was diagnosed some people have asked me if being autistic is really as much of a disability as they've been told. First of all, not all types of autism = disabled. While it's true that some levels of the spectrum leave a person non-verbal and low functioning, for some of us it's more of an asset than a hindrance. I owe my lifelong love of books to my aspergers, i'm truly never happier than when I have a new book to read and I don't have to do anything for hours except sit and read it. It has also given me a bafflingly accurate memory for song lyrics, lifelong obsessions with Classical Mythology, Architecture and Art History and the perfectionism to create superflat paintings that apparently look like they've been printed instead of painted. It's made me grow into a bit of a polymath, I am quite literally full of useless skills and oodles of information, I'm definitely the sort of person you want on your team at a Pub Quiz!
I'm also fairly used to making a fool of myself in public, which is ironic for someone who received treatment and medication for social anxiety. I blame the aspergers for this but I've often found that I worry and panic over the most trivial of things (oh no i've been walking around with mascara under my eye WHAT WILL PEOPLE THINK!!!) but when faced with something hugely embarrassing (tripping over and falling flat on my face in front of 500 people at my graduation ceremony) I just brush it off as no big deal. Honestly I still laugh now thinking back to my graduation, and that's just one of many similar situations where i've embarrassed myself on a grand scale.
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almost always unafraid to look like a prat in public... |
I think it's made me a little more willing to be silly in public. I'm very much the sort of person to start dancing in a shop if a song I like comes on, I also get incredibly excited if I see people dressed up as characters wandering about (I was jumping up and down at the opening night of Star Wars when I spotted Darth Vader, Kylo Ren, Jawas and Stormtroopers outside the cinema!). I'm the person that ends up sitting at the kids table at weddings and parties, busy colouring in or blowing bubbles with the children. I've always been a big kid at heart and I think now I know why.
I'm not saying it's a bad thing, personally I quite like being the daft one in my friend group, the one that knows all the words to a Disney song or the names of all the characters in a cartoon show. It doesn't bother me in the slightest, but society tells me that I should 'grow up' and become a responsible adult. Being a 'grown-up' doesn't appeal to me in the slightest but on some level I know that my current lifestyle choices probably aren't viable in the long-term.
I worry about my future, as a young woman with aspergers and just as a young woman in general. I panic that I'll never be self sufficient or responsible enough to take full care of myself. Right now I'm back living with my parents after a very unsuccessful 18 months living in a flat-share in town that only ended when my flatmate found me cowering in the hallway with a bloody knife in my hand and cuts on my arms (self-harm is just another aspect of my aspergers that i've been coming to terms with). I absolutely love living at home, i'm in such a better place now mentally than I was, i'm happier and busier than ever with my business. But I'll be 25 next month and I know, deep down, that I should be looking for stable income and my own place to live, regardless of my aspergers. Instead I often spend the money I earn on stupid toys for my desk (inflatable flamingo cup holder anyone!?) or on silly rides and games at the funfair. I also like to spoil family members with gifts and treats, so it's not all bad.
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acting like a Big Kid with my two nieces, wasting my money at the fair |
The thing is, I don't want a job. That is, I don't want to work for someone else. I like being my own boss, I like setting my own work hours and dealing with clients and customers. I love it because I don't have to leave my room to do it, it's a job that I can do wearing my pj's at my desk. I'm not at all put off by the thought of working alone and to be perfectly honest the idea of working in a bustling office environment fills me with dread! I have never been a team player, there might not be an 'I' in team but there's a 'ME'.
If I could just get past societal expectations then I think i'd be a lot more content to just carry on as I am. But people tell me this and that, get a job, get a boyfriend, get married, learn to drive, have children and so on and so forth until my brain hurts! Why should I have to do any of these things?! I think one of the best things about getting diagnosed with aspergers is that it's opened a whole new world of possibility up to me and shown me once and for all that I don't 'have' to do any of the things people expect me to do. Maybe I will get married, maybe I won't. Maybe I'll adopt 20 dogs and live in the forest. Who knows, only time will tell.
I think until then I should probably just ignore what 'normal' people tell me to do, and keep doing my own thing. Aspergers has also taught me that there's nothing wrong with being yourself, however weird or wacky you might be. Its helped me deal with things a lot better than I used to; for 10 years I struggled with depression and anxiety because I felt 'different' somehow, I thought there was something majorly wrong with me but my diagnosis has also taught me that there's nothing 'wrong' with me, it's everyone else that's weird! ^_^ (i'm kidding... well sort of anyway).
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me as a Disney Princess, thanks to Snapchat |
Can anyone remember the original point of this post because I'm not sure if I can. Anyway, the gist of it is that I'm delighted with my diagnosis, 6 months on I'm still learning so much and finding out about other people's experiences living on the spectrum. I have aspie friends that I talk to online and i've even spotted it in other people in my life (turns out my dad definitely has aspergers as well). I've probably got a long way to go before I'm ready to truly 'grow up' but until then I intend to make the most of being a big kid (albeit one in their mid-twenties) and try not to let other people get me down too much with their attempts to tell me how I should and shouldn't be. I'll be whoever the hell I want to be, thanks anyway.
okay I've probably rambled on for long enough now so i'll bring it to a close. Thanks for stopping by, feel free to ask any questions below in the comments. I'd also love to hear your own experiences if you're on the spectrum, drop me a line, i'm always happy to make new friends online.
bye for now...