3 months until the end of the year , surely I’m not the only one who’s 2021 started off the worst . I’ve experienced so many emotions this year , from the most pain to the happiest I’ve ever been , I’ve felt empty and broken, and I’ve felt whole , like my missing piece appeared. I’ll admit I’ve had days where I’ve felt like nothing will ever get better , I’ve thought to myself this isn’t fair , but then I look at what I have and realise , I might be hurting some days and I might be angry and and somedays hate myself and others but I have everything I need right now, I’m content , I’m never alone and I’m happy. Everything will come when it’s time and my life has already been planned out , I just have to wait and see where it takes me. So all of the tears and meltdowns and feeling not myself one bit, will all be worth it in the end , because I’m coming to realise that I’m in charge of my life and I’m able to make decisions for myself.
And I’m back. Its been a while but I don’t want to write useless blogs , so it takes me time to think of things that really mean something to me. Anyways , I’ve been coming to terms with the fact that because I have autism it doesn’t mean I should be ashamed or embarrassed as I was when I was younger, I wouldn’t make it a thing to tell people & even now I still don’t, the way I look at it is you don’t instantly meet someone and say oh I’ve got asthma or I’m diabetic, so why should I say oh hi I’ve got autism? And it makes me feel very awkward and anxious when people ask me about it , or say ‘so what are your triggers’ ‘how do you self regulate’ , I totally get that people might be interested but I need to have my own time to tell you , rather than being bombarded with questions. Anyways right now I’m learning to love myself, I’m learning to realise that certain things I do , I do because I’m seeking a lot of sensory , I’m trying to self regulate. As I mentioned in one of my first posts I didn’t get diagnosed until I was 17 years old, so I didn’t get any help from psychologists or doctors. I was told that because of my age I was being discharged straight away and would have to go back to my gp for help. I’ve taught myself how to manage and how to deal with my own autism, and I’ll fully admit its been hard & I’ve had some awful days where I don’t know why I feel the way I do, but recently I’ve been understanding some things I do. If I’m anxious I will count my fingers over and over again. Water helps me , even just washing the dishes and squeezing a spong over and over and making as many bubbles as I can until I feel contained. I can’t manage when I’m tired, if I’ve not had enough sleep or I’ve over slept, I really struggle to regulate & it causes so much upset and anxiety, its the worst possible feeling for anyone. But I’m getting there, I don’t think I’ll ever fully get to where I want to be , but I’m always making progress & that is what is helping me love myself ❤
Recently I’ve been getting stuck on what the write about , I try and think is it going to be interesting ? Is it relevant to the blog ? , in reality it’s my blog and it shouldn’t matter what I write. Anyways I was in bed last night watching the Big bang theory (my comfort show) & the episode kind of smacked me in the face season 7 episode 8 ‘the itchy brain simulation’ so if you’ve seen it you know what it’s about but I’ll put the link at the bottom so you can understand this post a little better as I’m rubbish at explaining. But I was watching and just realised, wow that’s the exact way to put things, an itch in your brain you can’t get. No one knows how a meltdown feels unless you experience it yourself, so people will say ‘get over it’ ‘it’s not the end of the world’, so put yourself in those shoes, driving yourself crazy because you’ve got an itch on your brain , but you’ll never have a way of itching it. That how I personally feel (I can’t speak for everyone with autism but I definitely think a lot more people will agree). You can’t ever put it into words how these things make you feel but that is extremely close to how I feel every time I’m having a bad day or a meltdown. So maybe think the next time you see someone who might be distressed or having a meltdown, you’d go crazy if you couldn’t get to that itch.
If you have or know someone on the autism spectrum then you’ll know that we always get very passionate about a certain thing. Now mine has changed a few times over the years but I always still love it , so it doesn’t really change i just find something else that I love so much, some examples are …
Pineapples, I don’t know why that one, Hannah Montana, my childhood obsession and still my obsession to this day (if I’m having an overwhelming day I will play hannah Montana songs full blast in the car), Buddy (we all know that) I will always put him before anything else in my life 😂 & Highland cows , now Highland cows have only just come in over the past year or so, but OH MY GOD I can’t get enough of them, I even just get happy looking at photos of them , I’ve even spotted a Highland cow bed cover on ebay that I will be 100% purchasing , I have many pictures in my house of cows and I’ve also eyed up a burner with a cow on, etsy have everything & honestly I look at them everyday.
I want to say that is all I’m as you would say obsessed with but honestly it’s me so there probably is more 😂
A bit of a short post but it’s definitely better than going on and on about something…
Well I have neglected the blog for a while , the last post I wrote was in October & I don’t even know why I haven’t posted 🥴 anyways , we’re still in lockdown , it’s still driving me crazy , but I’m doing okay. I mean I’ve had my moments & I’ve cried quite a lot , but that’s totally fine. I’m healthy and I’m managing so that’s all that really matters. I still haven’t managed to find a disposable mask that doesn’t make me want to rip my skin off as soon as I put it on until the moment I take it off & being a keyworker , well let’s just say that doesn’t help with the how I feel at the end of the day. and what about the covid vaccine , I’m so on the fence about it , one part of me wants it just so covid can be over with it, but another part of me thinks what are the long term effects , will it interfere with any current health conditions I have & there’s such a pressure to get it when it’s available and quick rather than actually having the time to think about it and make the right decision for myself. I mean I totally support anyone’s decision on this because we’re all different , this is just what I think. But at the end of the day I’m happy in my home , with cal & buddy & that’s all I try to think about right now , keeping myself sane and focusing on not working myself up to much about things that I can’t control.
To 14 year old Me,
Things do get better , you find love & you learn to love yourself. There are so many bumps along the way and that road has so many twists and turns & a lot of delays, but you get there in the end. You pass your GCSE’s even though it took 4 times to pass English , you applied to college & then had a melt down and didn’t go. But you went to sixth form & you passed all of your A Levels, & hey you even went to university. You’ve worked with children , you’ve made a difference in their lives and helped them to better themselves. Every job you’ve done you’ve helped others, you work hard all of the time , you’ve been tired , you’ve had so many dark days , but even more light days. You’ve fallen down but always got back up & you’ve learned to not hold onto things that upset you or stress you out. You’ve learned to make sure your happiness is always first. You’ve built a home & have done the best you possibly can , so when your thinking to yourself that giving up is probably the best option , trust me it isn’t, you have the best life with the best people around you & you won’t always feel like you do now at 14. You can and you will manage , it gets easier and you learn to cope.
Love 21 year old Me xoxo
Now I have nothing personally against people , the title may be a bit misleading but oh my god it is the most tiring thing being around so many people daily, in shops , in the street , at the doctors. You kind of have to put up a imaginary shield , and hope that this shield is going to work because it takes one tiny thing to break that shield and for you to lose your shit. But no one understand that , people don’t understand why you have a meltdown in public they just stare at you and give you dirty looks, because they’re not educated on autism , they don’t always understand. I mean here’s an example , I was in Aldi once and I screamed at the tills because they go far to fast , now I didn’t scream at the women at the till , I just screamed. I couldn’t handle how fast she was going & now I avoid Aldi like the plague , which isn’t easy when it’s the cheapest food shop 🥴 I also had a huge meltdown once because i wanted a can of pop and my mam said okay you can go and get one, but I didn’t want to go by myself , I didn’t want to go and buy one from a stranger in a shop , so I didn’t get the can of pop. I was to anxious and in fear of the worst possible thing, all over a can of pop. And I look back now and think yeah that sounds a bit strange because I’m able to do things like that now , but it’s still extremely hard. I keep it to myself a lot of the time and then it just builds up and builds up and makes me snap at the people I love and I don’t mean it but my god it’s so hard to explain these things face to face. Going out everyday is a struggle , and I enjoy going out all of the time but it takes a lot of energy to prepare myself to go out and sometimes I don’t even realise I’ve prepared myself or that I was anxious before going out because I’m so used to doing it my whole life that now it’s a second nature. I will plan everything I’m doing & if I want to go out somewhere I will go o it as soon as I’ve thought of it , whether it’s going to b&m or walking the dog , I need to do that as soon as I’ve thought of it or not at all , otherwise I won’t ever do it.
So just a note the next time you see someone who’s having a hard time in public , or it’s a grown adult having what looks like to you a tantrum , they’re struggling & dirty looks , tutting , whatever you decide to do isn’t making it any easier for them. It’s making it so much worse.
Now one person who has been by my side through childhood, school, and now adult hood is my right arm. My Big Sister. And we fight like cat and dog, I have been verbally and physically aggressive towards her throughout our lives and do you know what her response was? She would just take it, she would never hit me back, she never said anything nasty to me. She could see through me , she knows when im upset, angry , distant and even extremely happy. She knows how my mind works , and yes my mam knows me inside out, back to front knows what im going to do before I even do it. But Gab knows how im going to do things, she knows how my mind thinks and even the small things like something that might irritate me a material or texture, she knows why.
And sometimes I feel like I should apologise to her because growing up a lot of things were about me and thats because I couldn’t put the world together alone, I needed that help. But she understood, she never displayed that she was angry with me because of this, she always kept this to herself, she would put me first even when she needed help herself. She knew what I was struggling with and wouldn’t even think about herself for one second. I struggled a lot through school and she was always there to hold my hand, to make sire i was okay and to bribe me with chocolate when I point blank refused to get the HPV Vaccine, she would leave her lessons to come and help me if I was having a meltdown. Because she was the only one in the school who could get through to me, who could focus my mind through any of the stress and overwhelm I was feeling. And for that I will be forever in her debt because without this I honestly dont think I would have made it through school. I honestly am so grateful to have a sister with such a close age gap because going through all of this alone would have been so difficult, I wouldn’t have managed.
She has been there when ive cried at night and not known the reason, she has been there when ive achieved my biggest accomplishments, passing my GCSE’s , passing my driving test, graduating. She’s been there through it all. And I go on and on about being the middle child and what a stereotypical middle child is like but honestly im glad I am because without a big sister to help me through all of this , I wouldn’t be me today.
Now this is probably the most lonely and daunting time in your life when your transitioning from teens to adult hood , especially when you have ASD. And there isn’t anything more routine crushing than being told you won’t get help from CYPS anymore but if you need help go to your GP , which doesn’t sound too bad , but they then have to refer you onto someone else & that takes forever , then you have to get to know a new person who doesn’t know you , or how you deal with things & then you go through the trauma again of retelling your story & let’s be honest that isn’t easy , at all. So I’ll tell you how I done it & this might help you or it might not but there’s always someone that might take even one word from you that will change their life.
So I was told at the age of 17 that it was nearly time for adult hood , now a little back story.. if you’ve already read the other posts I have done you’ll know I was only just diagnosed at 17, so your thinking ‘what?’ How are you already being discharged , well I started going to appointments at CYPS at 16 & didn’t get a full diagnosis or help until I was 17 , after 3 different psychologists seen me & I had to repeat everything to each one of them , about 8 months after I was diagnosed I was told that because I was coming up to 18 years old that I would be discharged and any help needed would have to be through my GP and into adult services. My whole body just sank into the chair , a huge black hole , that I seen as adulthood. So as you can imagine I dreaded turning 18 and was not looking forward to being classed as an adult , I didn’t want to retell my story or even go through the struggles I have always done , so when it came to being discharged I just kind of tried to manage my life myself. And I’ll tell you it was hard , I wouldn’t answer the door when a takeaway was delivered , I wouldn’t order my own food at McDonald’s or a restaurant & I relied on my mam a lot. But I was doing my A Levels and had a lot of support from the school which was such a bonus , and I was focused on my life and doing what was best for me , but that wasn’t easy. I cried a lot at night & I didn’t want to leave sixth form because I was comfortable , I felt safe , and I enjoyed it. But reality hit that I had to leave and I couldn’t just stay at home , so I applied to college & started a foundation degree , I decided on the foundation degree because if I didn’t want to do 3 years of university then that was fine I didn’t have to , I could just do 2 and have a level 5 qualification. Which is what I did , I achieved the level 5 in children and young people. I graduated. But the process was difficult , you see I struggle with academic writing , but was too scared to ask for help and support so I would just figure it out I suppose , my lecturer knew I was autistic & specialised in autism so she knew when I was anxious or on edge & she knew when to ask if I needed help , so she was a saviour , that’s when I learnt not to hide it from people who can give me help , yes I hid that I had autism from many people when I was getting older & not because I was ashamed of me but because in this day & age it seems to be funny for people to use ‘your so autistic’ as a insult to their friends , who aren’t autistic. And when you see that happening it makes you feel dirty , like you belong in the gutter , like you should be ashamed of who you are. Anyways , I started to tell more people about having ASD & at first I got some funny looks & some people would just blow it off asif I was lying to them. I just got my head down and focused on my study’s. now during these 2 years I needed a part time job , I had put it off for so long until I was offered a bar job at a caravan site my grandparents lived on , the owners of the site have known me for 16 years so they knew who I was and the struggles I had & decided that they would give me that chance to better myself & I know that not everyone can get something this easy but there are people out there who will give people like us a chance & wont discriminate against us for being who we are. so I done 1 season of working on this bar & then didn’t work for a couple of months , I then got another job at a bar in Alnwick & this was a huge step for me because I didn’t know anyone there so it hit me that I was going to have to be vocal & confident , and I did just that. It was hard going into this specific job , because everyone knew each other there & Alnwick was a while away from where I lived so I wasn’t part of that community , I was looked at like I was just someone to cover when they all wanted to spend time together, anyways that job didn’t last , I left after I got back from my holiday & then wondered for so long what job I could do next , I was still a full time student so needed to have something flexible & not as time consuming. That’s when I went into home care & it wasn’t the field I was studying in , but it helped a lot , I became a lot more independent and I was able to thrive with my confidence , I don’t really want to make this all about my jobs so skip forward a bit I was in home care for about a year before I got a job at the end of my degree in a children’s home , I loved this job when I started and it made me realise that even though I struggled over the previous 3 years I was still able to give myself the most normal lifestyle I possibly could. I have a driving licence , my own car that I bought , an amazing relationship, a stable job & my own home , and honestly it doesn’t seem possible when your in such a dark lonely place but trust me it is so worth the struggle in the end & yes I stop struggle , daily in fact , but that doesn’t stop me & won’t stop me.
I hope this has been some help to some people , I will also try to do a follow up post at some point so keep an eye out ☺️
I sympathise with every girl out there with ASD or who is struggling to get help with ASD, because it is so hard. That in fact that boys are 4 times more likely to be diagnosed than girls because it’s easier to notice their symptoms , where as us girls , we’re good as masking them & trying our best to fit in with ‘normal’ society.
So when you get the usual ‘you don’t look autistic’ or ‘really it doesn’t seem like you have autism’ I totally get the feeling that comes across you because it gives you that thought of ‘am I just over reacting?’ , ‘what if they’re right?’ , ‘is it all in my head?’ & that honestly is a horrible feeling , because not only are you already struggling but your then made to doubt yourself as well , all because of one persons ignorance on the condition.
I mean how many times do we need to hear the words ‘it’s her emotions’ , ‘after puberty settles down she should feel better’ , ‘she’s a young girl they get like this’ & that’s from a licensed Doctor 🥴 , or even how difficult it is to get referred to CYPS ? , like are doctors now educated on the signs of autism & that it is possible for a girl to have autism , it’s like whatever is said goes in one ear and out the other , your sitting in their office literally crying out for help & you just get sent off home & told you can manage. Even now at 21 years old I still get the ‘you don’t look autistic’ , is there a look ? If so could someone please tell me what it is , I’m intrigued, honestly I am.
So this was just kind of to get it off my chest , because I know all too well how difficult it is to be a girl with autism , so if you know any girls with autism please don’t say these things to them , they hurt & they will make us doubt ourselves & the struggles we deal with everyday , we are here & we still have feelings , please just be kind.