Living with AUTISM!

It can be hard for people to see the difficulties I have every day seeing as so many of them I mask or are internal battles which I face. On the outside, the majority of the time I come across confident, knowledgeable, functional…just like everyone else.

Noone sees the constant battles that go on within me all the time. I overanalyse every situation because I am so afraid of getting it wrong, not being like others and messing things up. I know that people battle their own demons all the time, and I by no means thing having autism is the only way and the reason that this happens but think of everything that runs through your mind during the day and then magnify this, include the inability to read a situation easily, the social anxiety that comes alongside, knowing that at any moment the sensory overload or buzzing within your brain could result in a physical and distressing melt down causing you to hurt yourself, feel overwhelmed, loose ability to speak and a magnitude of other feelings.

Whenever someone makes a comment to me I worry about the response I am going to give. Will it be the one that they are wanting? expecting? Will I end up making a joking comment that isn’t actually understood or funny. More than likely I will over talk, or end up talking about one of the things I immerse in. The only time this isn’t the case is when I am dealing with facts. Facts are true. I cannot mess them up. This is why my confidence, until recently, has always been at work. I know what I am expected to do, what I am supposed to do, what the right answer is. Therefore I can answer questions about what to do, or how to do it. This is safe for me. Every other conversation I have comes with a level of anxiety, of hope that the person doesn’t think I am weird.

People with autism are often thought of by having a lack of empathy. This couldn’t be further from the truth. I recently came across a meme that said “We do not lack empathy as people know it. We lack COGNITIVE EMPATHY. That is the ability to predict other’s thoughts and intentions including the ability to read between the lines during communications. We have plenty of AFECTIVE EMPATHY which is the ability to share another person’s feelings with them. We have plenty of COMPASSIONATE EMPATHY which is the desire to help others (though we may not always know how). In fact many of us have TOO MUCH affective empathy and compassionate empathy which can be overwhelming for us.” This is one of the truest and realist comments that I have come across in regards to how it feels to be me. There have been so many times where I have had the best intentions and all I have wanted is to do what’s best for someone or to help them that have resulted in me falling flat on my face and in fact often make the situation worse. There have also been many a times in my past where I have been used, abused and walked all over by people whom were supposed to be my friends because I care too much and will do more than I should for people, and I would do it all again in a heartbeat. There are positives to this too though, I believe it is this that makes me as good with children and at my job as I am. It means I will walk to the end of the world for the people in my life I care about and who I love. It means I wont give up easily on the people I care about most, in fact I physically can’t.

Living with autism feels like I am always trying to curb myself and hold back from the person that I really am in order to fit with the norms of everyone around me. It means keeping thoughts to myself because I do not know how people will respond and its just easier trying to please everyone rather than having to handle and deal with confrontation. I have tried as I have grown to do this less. Let myself be me, speak my mind more. Sometimes this feels rewarding but sometimes it feels like I should have just played the game and not argued my point. I know I can be overly stubborn at times and it can be hard to read what is actually something I should be standing up for and what is something I am overreacting over because of what it means to me personally even though it may not be that important to others. For example, if you tell me you are going to do something, come and see me, pick me up at a certain time, even make a certain thing for dinner etc and then can’t I will not be able to handle this unless you have an amazingly good and rational reason, and even then I will find it difficult to deal with.

Having a brain that overworks constantly results in times where being alone and immersing is all I want to do. Is all I can bring myself to do. I cant handle being touched, being social. I am physically and emotionally drained and my nerves are literally frayed making even the smallest touches feel painful, having to concentrate on any conversation a challenge, a nuisance even, for just a little while I need to not worry about anything or anyone else. Often I meet this need through reading, if I cannot watch something, like fanfiction on my phone. Just a short period where I can immerse in a story and then I can deal with the real world again. The only problem is when I am so emotionally torn I cannot shut my brain down enough to do this and this is when I will lash out, verbally, or start stimming or even have a meltdown. Its not that I need to shut myself away from people, especially those close to me. They can be right there with me, but I just need a moment to try and quiet my brain and give myself a chance to catch up with all the processing I have had to do, allow my senses to get back on an even kilter.

Living with autism is not at all easy, and I will always face greater challenges than others and I will forever to lacking in understanding of social skills but every day I get up and I try. I try to be the best early years teacher I can be, I try to be the best friend I can be, I try to be the best fiancée I can be, I try to be the best person and version of myself that I can possibly be. I will fail. I will struggle. I will not always meet your expectations but I will always continue to battle forward. To stay strong in my strengths and to strive to educate others. I will always live with autism, but everyday I will remind myself that AUTISM IS MY SUPERPOWER! Every superhero has struggles and powers come with as many issues as they do blessings. These are mine. Always.

Happy birthday to me…

Birthdays have always been a bit of a conundrum to me really. One huge aspect of me hates them. I dislike knowing there is a ‘surprise’ coming (does it count as a surprise if I know its happening yet do not know what it is?). I want to know what people have thought of when they think of me and therefore the presents in this aspect, its nice knowing that people know you and the thought that goes into it but the anticipation of presents is awfully frustrating. Opening them in front of people also isn’t very enjoyable. I hate having all the attention on me like that, plus I am not very good at masking my feelings so what if I genuinely don’t like the gift? I wouldn’t want the person to feel bad but I am afraid that my face and actions would give it away even if I tried my hardest not to. I utterly hate the attention from others that birthdays bring and yet am devastated if people do not wish me a happy birthday or acknowledge it. Yes this makes no sense. It gives me pleasure and joy and love knowing that people are thinking of me and care enough and shows how I am fitting into this world when people say happy birthday and care which is a huge achievement and sign of success to me, I am making friends. Yet the attention and the obligation on my birthday to be uber happy and want this is difficult. Things like facebook and messages help, people can show they care enough to wish me a happy birthday without the need for me to be in everyone’s physical presence. It tends to be why I take my birthday off work. Not because I don’t absolutely love the people I work with but this way I can spend it with people I am closest too and feel less obligated to pretend I enjoy the attention around.

There is a high expectation around birthdays to do something amazing, and who got you the most amazing present but honestly this isn’t me. I am happy to spend time with the people in my life, do something simple and spend the day basically doing the things I love such as watching the films I like or reading for a while, and as far as presents go I care about the thought that has gone into them. I like knowing what people think of when they think of me, what made them get a particular thing. I love buying presents and thinking of peoples interests, likes and sentimental things which they might find touching. Buying other people gifts and celebrating their birthdays is so much better than my own! Maybe this is why I prefer Christmas… because its more for everyone.

Birthdays aren’t exactly the happiest time for me in recent years either. Just before I turned 30 I took an overdose. I couldn’t handle everything any more and I have such high expectations and routine with how I wanted my life to be and I didn’t know how to adapt to that not happening. Now every year I am reminded of that. Yes I see each year as a step forward I have taken and it shows how far, and how quickly things can turn around and yet it also still reminds me of that time, every year older I am I still have to squash some of them thoughts and expectations for myself. Convince myself it is okay that and I have time for the things I am still working on even though I feel like time is ticking away. This will always be a challenge to me and something I reflect upon on my birthday, I don’t think that will ever change. It does get easier with the help of those closest to me and it doesn’t suck me in like before. I think its important to realise that although something we celebrate and should, birthdays for everyone are not always such a joyous affair. Sometimes it does hurt to get older for whatever reason, or to celebrate without someone you thought would be in your life forever. That’s okay. It doesn’t mean that every year is going to de as hard, but it doesn’t mean you can not take the time to reflect and feel this on the day too.

This year there have been other reasons why I have struggled a little too, which I have touched on within the comment above. Sometimes people who you thought would always celebrate with you don’t for whatever reason, for example this year has been the first year that all my sisters have been living away from me and I haven’t been able to see them. They called and sent me a card and this was absolutely amazing. Video calling them put a smile on my face and even just seeing them made such a difference but it is still difficult accepting the change and being okay with missing them like I am. It will always leave a little hole inside me but every time I see them, or talk to them its a little easier to manage.

There is one other person this relates too but I am not going to get into this too much as it is unfair on the other person but its been difficult not having them around. Yes, part of this is due to my love of routine and familiarity but its so much more than that and I wish I could make them understand that. I spent the whole of day hoping and wishing for a message, or them to come over. Even watching the film I wanted to see yesterday at the cinema reminded me of them and I had to fight back tears (btw Frozen two is very very good though!). I felt like the whole day was tainted with my inability to let go of this persons presence, so thank you to my partner who still worked his hardest to make it a day I could enjoy, and to my close friends for understanding.

When people change the social norms…

When people switch up the social norms of a situation it can be particularly difficult for me to understand and figure out why? What was wrong with how things were before? Why in heavens did it need to change? Let me give you some examples…

Since moving out we have been to Justin’s parents twice for dinner. Now before I used to go there every weekend, they would be welcoming saying hello and asking me how my week had been etc but then we just got on with the weekend, as if it was normal that I was there and accepted. Now when we go for dinner both his mum and dad will welcome me with a kiss on the cheek. I know I am now a ‘guest’ as Justin no longer lives there but I have been going round to theirs for two years and been given a everyday welcome why now am I being treated differently? I just do not understand it. Why the big change and make such a fuss when we come over now? Nothing has really changed, I only ever used to go on weekends before? It has really thrown me both times this has occurred now. I just expected things to continue to be the same with the way our relationship worked but apparently not. This is the same with dinner itself, we are ushered into the dinning room and dinner is given a lot of thought and effort and we have both times had something ‘special’ for pudding. I thought that dinner was fine before and that his mum was always welcoming with food and everything but this has been more. Like when her sisters and family come over.

My aunt has even had a touch of change when we have dinner there although no where near as dramatic. She still greets us the same and doesn’t have any different expectations in behaviour or anything whilst I am there. I don’t feel the need to ask to go to the bathroom at hers I still feel like it’s a safe place for me, but she has been giving lots of thought to dinner and buying us extra little treats. I guess this is because she is only seeing us once a week rather than every day now so I do understand to some degree. I just never expected or assumed that things would change. I just believed that things would be exactly as they were…just on a less occurring basis.

Why do things have to change like this? Why do I now only feel like a guest at Justin’s parents house? I feel like I do when I visit places I haven’t been much before. Don’t get me wrong at all they are still lovely and none of that has changed. The issue isn’t them it is how I now have to adapt. I think people just think this is easy to do. For me it really isn’t. I get used to how something is. How people are with me and when they then mix this up for any reason it really throws me out. Another example would be if someone whom is my friend randomly treated me really professionally in other circumstances or something. It is really hard to explain and I know that I am not getting my point across how I intend to which is really frustrating but I hope you understand at least the basis of what I am getting at. Why is it that society means we switch up the social norms in these ways? How can anyone who struggles socially, especially those on the spectrum be expected to keep up with these ever changing expectations? It is a challenge everyday to fit in and follow social norms (many of which already make hardly any sense!) without them being switched up on us.

This is something that is really perplexing to me! Not only that but I am also now expected to treat people differently when they come to my home? Why! My relationship with this person hasn’t changed so why do I now have to be over polite. Of course I would now be a host in the sense of offering them a drink and what not but I feel like the whole way I approach them is expected to change and I really cannot fathom why this is. They are still the same person I knew three weeks ago before I moved in. Why act differently with me? and expect the same of me? I am telling you it is absolutely mind blowing! Am I meant to be treating Justin any differently now that we live together because if so I am failing miserably!

If anyone wants to explain this to me or give me any pointers or ideas on how or why or what I should be doing socially now please do! I am just expected to know the difference and the change and I honestly haven’t got a clue!

An extra little moment…

So recently I have been questioning myself and my career. I love what I do more than anything but more and more recently I have felt inadequate, not good enough.

All my life I have struggled to be like everyone else, to see the world as they see it. Every day is a constant battle to understand and decipher social situations, not feel like an outsider. Working with children has always been the one thing I believed I was good at. Something that came more naturally to me, understanding children is for some reason 100 times easier than adults and I truly believed I was good at it. But now I am questioning everything. Due to circumstances which I cannot discuss too much Ive been made to feel like I’m good enough to be this person anymore. My aim has always been to be the very best for the children, they deserve that! What I do as a practitioner is essential. I’ve always prided myself on my ability to meet their needs. And technically I know that no one is saying I’ve lost this ability, just that I’m not ready for the progression but now I can’t help but not feel good enough at any of it. I feel like such a failure. Striving and feeling good about one thing I genuinely believed was a talent. I’ve never before questioned my career choice but now I’m wondering whether working with children is even what’s right.

Something else that has been on my mind today is that I hate how people sometimes think I’m being overly dramatic or over analysing a situation. I cannot help this. You can tell me to your blue in the face to just get over something but how can I possibly just ignore the myriad of emotions and sensory overload that is stabbing away inside me? I cannot change the fact that my brain processes things differently, I cannot change that some things effect me more than what you think they should. I am just a person trying to be a square peg in a round world. I am doing my very best. Sometimes the feelings inside are so difficult that really all I want and need is to curl up under blankets, take away the sensory overload and be for a while but I can’t do this as often as I require because I am trying so hard to fit into the world which I find myself. Sometimes I am lost and I don’t even know how to begin to be found because no one understands what I’m feeling.

What’s occurring in this life of mine…

Firstly, I need to apologise for the small break there has been in updates! This has not been intentional and I will still endeavour to write as often as I can moving forward but there was been some very good reasons as to why I have not updated… the most important being that I have finally moved into my own home!! My very own home. This has of course been a very interesting time for me and one I will go into deeper in a moment. There have been other things going on recently within my life too, some which I cannot touch on yet due to the nature of them and the circumstances surrounding them but I will at a later date.

So let’s go back to the most exciting, life changing and scary thing… moving into my first real home! This has been something I never believed I would achieve due to factors surrounding both my autism and my past much of which I have discussed in previous posts.

The actual process of moving in was probably the most traumatic part of the whole experience to be fair as this was the most hussle and bussle. The day we got the keys we came over and started decorating the living room, painting it a lighter cream colour. This didn’t seem to take so long and everything was falling into place nicely. On the Saturday was the main bulk of the decorating, and I bought over a load of boxes in my car this also seemed to go very well, no real issues throughout the day and I was feeling calmer than I thought I would be about everything. This may have been due to the excitement of having a place where I could settle.

I think this is why it has been such an easy adjustment and not something that has triggered any meltdowns or feelings of anxiety. For me this was the least unsettling. I have lived since about the age of 16 between places, never being fully registered within a place so therefore unable to do something as simple as having my post sent to one place. Always living in fear that I would have to leave and move on for whatever reason, either the person getting fed up with me, it effecting their income or life too much, something happening to that person and therefore in effect making me homeless too. Although I will always be forever grateful for everyone that has had me stay with them over the years, especially my auntie who has been like a mother to me and gave me the closest thing to a home she could given her circumstances. Owning the flat takes away so much of the anxiety that I have had over how and where I live. If anything it has calmed my feelings, allowed me to sleep better, settle better, feel at ease.

Anyways, following the decorating it was time to move everything in on the Sunday. This meant people everywhere, lots going on, everyone trying to work out the best way to do something or to organise trips etc and honestly I just wanted to sit in my flat and bask in the fact that it was actually mine. The first things I needed to sort and unpack were my obsession collectables, dvd’s and books. I know to many people, especially Justin’s parents for example, this seemed strange and almost selfish because it was only my things but I need them. I needed to put up all of my Iron Man things. It made me feel happy, took away the overwhelmingness of everyone being there, everyone trying to do so much at once. It may not have been the most essential thing for actual living, to needing to get by each day but to me it was just as important if not more so as having some food in the cupboard, or the bed put up.

Buying and sorting all the things in the flat has been amazing, making it a home for both of us and sorting it to how we want it. The only aspect here is that I am very impatient when it comes to matters like these. When I know how I want something to look or what things I want to buy then I want it right now. I  am not good at being patient and getting things over time, I want things to look how I envision them right away. I have had to really work on this and curb the urge where possible. Allowing my partner to make decisions about our home too and come to compromises where needed. I suppose this is probably similar to many people when they first move in however I struggle more than others to stop myself and hold back.

So we are now two weeks into living here and everything is running pretty smoothly. Our first supermarket trip was thankfully hassle free, and not as busy or traumatic as I first envisioned it to be. We agreed on what we needed to buy so I am guessing that helped matters! The only thing we have had an issue with food/drink wise has been the milk… Now to me it says on the carton that once opened it has to be consumed within three days, also at work this is something we have to follow, therefore once three days were over I poured the rest down the sink. Now when Justin came home he asked where the rest of the milk had gone, and said that to him this is just an advisory and he goes by the date on the bottle. I burst into tears. I felt like such a failure and yet I knew I wasn’t going to be able to change my thinking. I knew I wouldn’t be able to use or keep the milk after three days because its not what it says to do. It really wasn’t a problem, the easy and quick solution is that we will buy two smaller bottles of milk rather than one large! This way it will keep both of us happy.

I have loved having people come round and see the home that we are creating, showing them what we have achieved. I have never felt prouder than what I do of our little home and how it is coming together. I am sure over the coming months there will be more posts related to how home life is going and the changes and adaptions I have to go through, but for now I am going to finish up, relax in my arm chair and enjoy the feeling of being at HOME.

Meltdowns and how traumatic they are…

Unfortunately like most people on the spectrum meltdowns are a natural part of my disorder. Most of the time they are quite mild and I can pull myself out of them by engaging in wearing my ear defenders or biting myself. Occasionally something triggers me and my meltdowns are a lot more intense.

When this happens I know I’m not going to be able to prevent it. I can hold it off, keep the buzzing and emotions on the inside for a while but eventually I need to let it out, take myself away and just let the meltdown happen or risk it being even worse. When I feel like this I need to put myself into as confined space as possible, pushed into a corner, squeezed between two pieces of furniture. Covering my ears helps but it doesn’t take away the sensations. It’s when it gets like this that it is most embarrassing, biting doesn’t even make enough of a difference, doesn’t ease the feeling of meltdown like it normally does. I hit my head. Either against a wall or something close by and if I can’t do this or it isn’t enough then I will pummel the heels of my hands against my forehead and temples, faster and faster until I cannot take anymore. I cry and cannot stop myself, become in capable of speech. It is a horrible experience. I hate the idea of anyone seeing them. Not because i am ashamed of having meltdowns, I know they cannot be helped but because people don’t understand them. Have terrible perceptions related to them. People think I can not cope or that I am a freak, that these are weird, that it makes me weak.

Once a meltdown is finally over I am physically, emotionally and mentally drained. Even more so when they are as strong as these ones. I can if I need to go right back to whatever I was doing as if nothing happened, if that is what is required of me but once I’m home I will often have another meltdown to compensate for the role i have had to put on and the mask I have had to work so hard to wear.

After I am heartbroken about the fact that my autism has let this happen all I can think about is what the people who know or saw my meltdown think. What are their perceptions of me now? This feels worse when it is around things such as work (very rare) or my fiancé’s parents etc. I spend my life trying to show people how capable I am just for it all to come crashing down around me when a meltdown hits.

Not only is the actual meltdown itself traumatic but the after effects are if anything even more so. The loss of respect, understanding and the way people then see me breaks me inside. I wish the understanding that meltdowns weren’t a character flaw, do not make you a weak person or change the good things about you were better understood. That it didn’t change how everyone around me looked at me.

I really wish I could take back the large meltdowns. Not have the lasting effects that come from them such as the inability to sleep because of processing and worrying, the bruises from where I have bitten myself or banged my head. They lead to a lot of questions, I’m not ashamed because I know why they are there but again I know people see it as self harming when that isn’t strictly the case (yes I have harmed myself but it’s not for the same reasons as self harm)

I just want everyone to know who reads this that I am sorry. Please don’t think any differently of me. I am still a capable and strong person. I am still me. Don’t focus on this one moment. Remember all the times I haven’t had a meltdown, and that autism is something I have to live with everyday. I battle these feelings all the time.

Struggles with conversations and thinking about my wedding…

The biggest sensory issue for me probably relates to auditory senses. I wouldn’t say I ever even realised it to begin with, its only been as I assess myself that I really see it. Lots of people talking is the worst for me and I hate it. It means I struggle when people are all talking at once, or when voices begin to raise or even when there are just a small group of people all involved in a conversation. The voices constantly changing grates on me, makes me want to cover my ears, tense up and just shut myself away. I hate this because it comes across as I am being rude as I shut myself down. I find myself unable to join in with the conversation and needing to immerse myself in my own things, normally I will start reading or something on my phone in order to help stem the feelings creeping up on me. I hate this! How can I expect people to understand that I am being quitter than normal, or ‘playing’ on my phone because everything inside me feels like pins pricking at me, and the more the conversation goes on the worst the feeling gets until I want to cry, hide away, I get a physical headache from it all and want to stim in order to prevent the meltdown feeling.

What makes this even harder is that I don’t understand why this doesn’t affect me within my job. Children are by far the nosiest creatures going, crying at the same time, just making loads of noise within their play, all over the top of each other and yet this doesn’t phase me at all. This just makes it look like I am making up or exaggerating how I am feeling when I try and describe how noisy adult conversations make me feel. I can’t even say it is something that I understand so how can I expect others too? Maybe its because when I am in work mode it’s a role and a lot of my symptoms drop out and I can deal with situations that in similar circumstances I would struggle immensely with.

Maybe it is the tone or pitch of the noise? Children although higher pitched are somehow easier sounds for me to process than the throb of conversation around me?

During these moments are the times when I really want to wear my ear defenders. For some reason I do my best to battle through and not give in and put them on. Not because I am ashamed of the fact that I need them or anything but because this just adds to how anti social I look and the rudeness that I feel. I don’t want people to think I do not care, or am not interested or engaged in things they talk about, it isn’t about that at all. It just physically hurts. I apologise to anyone that thinks or whom has ever thought that I do not care or am being rude at social events. I would love to not suffer in order to make things look better, to not be an embarrassment or someone that people have to ‘apologise’ or ‘explain’ so that people do not get the wrong idea about me but I appreciate when people do understand after being explained to, not that it takes away my feelings of failing.

All the talking about sensory processing and noise level of conversation has got me thinking about planning my wedding. I had already decided I only want a small wedding, but all of this has cemented it for me, especially for the main ceremony. I don’t mind so much for the evening, its easier in a part mode (which is strange seeing as there are more noises to process…) but the whole attention wont be purely on me and I can immerse myself at that point in the dancing and having fun side of things. I have also realised how hard it is to find a venue that is going to be nice enough, small enough, cost effective enough and mean that I don’t have the hassle of going to different events throughout the day! It’s a good job we aren’t rushing to get married, partly for this reason. To give us time to prepare and find what is right. Then I start thinking on the other wedding issues, such as food. I can be quite fussy with the type of food that I like and am generally quite a plain and simple person when it comes to food but I know wedding food is often on the fancier side and actually this is what people expect…to be fair its not like I am a very hungry person so as long as my partner likes the food then it doesn’t really matter. It’s a lot to think about and take on board. This isn’t something im very good at. Anxiety of actually looking into things and having to go places and deal with all the logistics is difficult for me. I would be fine if I was supporting someone else, or doing it in a work capacity because it’s a role and I can take that on, unfortunately doesn’t meet the same criteria in my brain when it is for myself and I am left battling the over excited part of my brain that wants to sort it and plan it all and the other aspect that shy’s away from all of this and wants to be able to sort it all online with a few clicks. I wish it was that simple!