I lay here at night wondering, wondering if anyone will ever figure me out.

Years ago I wrote a comment down in one of my notebooks… I lay here at night wondering, wondering if anyone will ever figure me out. I wonder if anyone will find out the secret I’ve been hiding for years, if anyone will ever really know me and then it hits me…

This comment was initially about how I felt about myself, that I wondered if anyone would ever really understand me or know the real me. I then used this quote to go on to begin writing a story but that’s another matter all together, recently I have been drawn back to the story that I began and in particular aspects of this comment. Finally, I feel like I have began to address this. I have realized that as much as I desired for others to know me and to understand me it was first important for me to understand myself. This was before my diagnosis came about and I didn’t know my own mind, what was different about me and why. I was still trying to conform to the world around me and be normal, fit in with everyone in the way that I felt would make me normal. Writing my blog has been my way of exploring this and expressing myself, allowing everyone to see every aspect of me and to understand what makes me tick and how my autistic brain works. I finally feel like my whole life, my being, the thoughts within me which I locked away are not secret anymore. Finally people can really know me.

There have been lots of question recently over whether my blogs are a good thing to be doing, and whether they are causing me more harm than good in regards to different aspects of my life, but I know they are a positive. They help me in ways that I could not imagine. I am not always very good at expressing myself, and don’t even always realise that I hide so much of myself away without thinking of it. My blog allows the people close to me to see the bits I naturally hide away, unlocks the parts of me that I struggle to express. Whilst I know that it helps others to understand autism in a different light.

I know I am obsessed with my autism now. But is it a bad thing that my obsession is now related to something that is actually important? Not meaningless, that it makes me want to help and support others, advocate and stand up for myself? I am finally at ease with myself enough to want to stand up for myself and not to be used and manipulated by others and okay this may mean that I react in ways that people don’t always expect but I believe it is important for me to be able to express myself too. To be able to say when I don’t think a situation is right of fair. I have spent my whole life trying to fit in with everyone else and to conform to how they want me to be but I want that to be a balance now. I know there are things and times where I have to be the one to try and understand and be like everyone else, I cannot expect people to understand me if I don’t try to understand them too, but I also believe that there are times where I should be the one accepted too. My autism should not be used against me or seen as a negative just because I see things differently to others.

I want to make the world a better place, a more accepting place. I want to share my thoughts and ideas and help to educate the world on autism. I think that this is a positive way of channeling my desire and need to immerse and obsess. I know it wont take away the other things I obsess over but this has got to be better right? Its not that I am playing or using my autism in any way I am just more comfortable and accepting of myself, which is what everyone always says is best right?

Drawing back to the quote which started this section I have begun thinking about writing again, not just my blogs or putting them together to create a book on autism (which might I add is going very well recently! Hopefully news to come shortly!) but also about writing non fiction again. I used to love making up stories, projecting certain feelings into characters and then creating their lives. Writing has always been a passion of mine. Heaven knows if the story will be any good or if I will ever even complete it (seeing as I am continuing a story I started years ago now…) Maybe one day I can become a best selling author (yeah right!) but for now I am enjoying letting my imagination flow.

When ranting is all that will come…

I probably shouldn’t be writing what I want to write about today, but my blog is all about expressing myself, and this is the hardest thing going on in my life currently. Things may come across a little vague throughout and I apologise for that in advance but there is a very good reason why.

This week has been very tough for me. Everything I thought I knew, thought I was building towards has changed. Been ripped out from underneath me. Being told I will never achieve something because of the thinking that I cannot handle it has resurfaced a lot of things I thought I had dealt with.

I don’t feel good enough at all anymore, even at something that I have always known to be a strength of mine. I feel played and manipulated and unsure of my position anymore. I have spent months and months talking about how autism is my superpower and all the things it does benefit for me in my life but right now I am reminded of the negative. Not the fact that I cannot handle this situation, because I believe I could, but that I trust too easily. I believe too much in the word of people and will give the benefit of the doubt and allow myself to be used, abused and believe wholly in something or someone which I clearly shouldn’t. Even when others try to tell me, try to explain I still believe. Right now this is shattered. I put over 10 years of my life into something, for absolutely nothing.

I would like to say it isn’t because of my past with anxiety and depression or because of my autism. I would like to say that I’m not being victimised, again, but the truth is I cannot see how I am not being penalised because of my condition. This is what I hate the most. I cannot even do anything about it because they are too clever, have done it all in a way that doesn’t make it look like this is the reason. I see people who shouldn’t be, or who have done nothing but similar to me given opportunities and I can’t help but wonder why not me? The only difference is my autism.

Maybe I really am just assuming and thinking the worst, because really what evidence does society give me to think differently? To really think that I can stand up and advocate for anyone with autism when I cannot even achieve myself? I cannot make people see that I can do things, prove myself worthy.

 I can not decide whether I am blaming myself and my autism or whether they are really using my autism and past. I am hating on myself for not being able to prove to them I am better than they think I am, and then even more so for blaming my autism myself.

I want to scream give me a chance, let me prove to you, but in their eye’s,  they have already given me these opportunities. I really thought I was doing everything right. Everything I could to show them. I honestly believed I was good enough. Good enough to do it and to break the stigma that comes with autism. I thought I could be different. One of these people that others on the spectrum or whom understand autism would look up to, inspire towards, could change the world. Now I can’t even fix my own world let alone be a role model to others.

I am left feeling defeated and questioning my next move. I cannot sleep because my brain is buzzing overtime and all I want to do is hide away, immerse in a bubble, bury under the covers and let obsession take me under so I can feel the happy buzz that I know still resides deep within me, the side that knows that everything else in my life is amazing right now and shouldn’t I be hanging onto the positives as they are such amazing things, but the melancholy seeps over my skin making me feel jittery, on the edge constantly, like a meltdown is imminent and any sensory overload will push me over the edge. I am clinging on right now, battling inner demons and trying my best to show control and respect and not be upset like everyone expects me to be, because somehow not crying over it will mean that I am stronger than they think and not let them win when in reality I know I am only hurting myself further.

I know that most of this has been a rant, with no real explanation to what is going on but I cannot do it. No matter how much I want to I still have some silly notion of protection over them.

This is my brain every minute or every day at the moment. Buzzing over and over with these thoughts and trying to process a situation without much logic. The autistic brain is so hard to shut down at the best of times, when events like this are added nothing seems to help. It leaves me feeling exhausted but hyper aware, tired but wide awake, defeated yet determined. Unsure yet positive.

To my Monkey, my Tink and my penguin loving Porgie…

This weeks post is a little different and parts of it may seem off topic. This weeks topic is a dedication to three super important people in my life. My little sisters. This post has taken me a while to write, I have been avoiding it for a few weeks now really but the time has come.

Recently my sisters have moved to a place called the Isle of Man. This means that I will not get to see them every week like I have done. This is a huge deal for me. Not only does it completely mess with my routine and mean I have to deal with the autism meltdown and anxiety that this creates within me. I have known that this was coming for just over a year now and I have worked hard to try and prepare myself. I know this is a great opportunity for them and I only want what is best for them but just because logically I know I cannot stop of control this doesn’t make it any easier to accept or for my brain to really be okay with. It will take time but I will adjust. I have before. When I went to university I was only seeing them for one weekend or week a month usually. But this will account to the longest period of times that I have spent without them since they were born.

All my childhood I really wanted an older sister… yes I am quite aware that’s an impossibility really but I really did. I guess I felt like if I have an older sister they would understand me. I hated being an only child at times, especially with such absent parents. When I found out that my step mum was pregnant I was absolutely ecstatic! Finally I could feel like I had a family! I didn’t realise that this would also create many issues such as feeling homesick for the first time in my life and not understanding the feelings inside me. But I wouldn’t change a single struggle or moment I have had with them.

Let’s begin with my eldest little sister, my monkey moo! (Not 100% on where this nickname came from) you will always be the person that changed my life, that redefined what love was like and how much I could love one person. Gaining you in my life was the most wonderful experience. It resulted in a lot of change. I’d never been obsessed with someone in my family before so this was a new experience. I wanted to do whatever I could for you and more. The idea of loosing you battled away in my head and caused my anxiety to reach an all time high. I wanted to spend all my time with you but knew I still had to attend school and everything. Being 16 meant I could help out with you a lot but I still struggled to adjust. It took some time for me to find my place and know that I wasn’t going to loose you or that I wasn’t good enough for you and to not be overwhelmed with the need to be in your presence, watch you sleep or play. Your personality has and always will be strong willed. You know your mind and are as sassy as they come! You are your mother’s daughter through and through but that’s a good thing. Things can be hard for you right now because you jump straight to annoyed or angry and sometimes you do struggle to see others points of view but you know what it makes you an amazingly strong individual who sticks up for what you believe in and always have the people closest to you’s back (even if that has resulted in you getting into trouble), you love with everything you have and no matter what have made my life a much brighter place. I know that certain things have been the hardest for you but you do amazingly well with it all. And I am always here to support you and for you to talk with. No matter what the subject.

Next, my Tink. My mini me in all the good and all the bad ways. Yours is probably the hardest to write because watching you and seeing all my traits reflected back at me makes me feel an overwhelming love and admiration and yet a heart wrenching guilt. I do not want you to struggle in the same ways that I have. I want you to be happy and carefree like I see in you now. You live your life to be you and I admire that. I love watching how carefree you are currently and I do not want that to change. Ever since the beginning there has been a connection between us, this doesn’t mean I love any of you any more or less but something with us clicked. You were the more sensitive one. Often misunderstood and called emotional over the smallest things. The polar opposite to our monkey. When you were really little this lead to people getting frustrated with you but I got it, I could understand exactly how you were feeling. I felt like I could support you, help you through these times. You became as obsessed with me as I was with having sisters. You only wanted me to get you dressed, put you in the car seat. You doted on me. I guess these were the first signs that you are so similar to me but I didn’t yet have my diagnosis. The older we both get I see more and more of our similarities. I try very hard not to project. I am not saying you are autistic. But I also wouldn’t be surprised if you were. You are so bubbly and happy and have a completely different family support system to me that even if you are it will hopefully never really effect you negatively in the way it has me. You can focus on all the amazing positives it brings you, like your need to always follow the correct rules and ensure everyone else does, your passion for the things you are into and enjoy, your never ending love for me, your favourite superhuman and the way you never seem phased by anything. You remind me and help me to see all the positives within myself. Never change. Be whomever you desire to be and know that you have my support no matter what!

Finally my penguin loving porgie! The amazing mixture of all the others traits rolled into one! You are the reason I fell in love with Makaton signs and know how much it can support communication even when there is no additional need! You refused to talk because the others would do it for you, I was on placement at the SEND school and picking up a few signs which I decided to try with you. You picked them up amazingly and in no time was using language alongside them. You helped to create this passion in me and my want to use it more throughout my career with all children. You are always so positive and by my side. I watch you socially and am amazed. You make friends so easily and have so many. You are a social butterfly and as much as it overwhelms me it thrills me to watch you thrive in any environment. Penguins have been the animal you have loved for as long as I can remember, and me won’t bring up the whole mungo/ mumble fiasco! It is the thing about you that is truly unique. As the third and youngest you often follow the footsteps of the other two, sometimes shadowing your personality in their likes and interests that it can be difficult to see your true desires. Penguins are the one thing that at uniquely you and I will always associate them with you no matter what. You have been so resilient through your early life and have taken everything in your stride continuing to be happy and love life. I want you to be you. Continue doing the things you enjoy and for you whether they fit in with everyone else or not. You have always been the one to resolve conflict by giving in, when you were little giving the toy to the person who wanted it even if you were playing with it, but please remember what you want is important too!

I know this weeks blog doesn’t discuss as much of my autism as normal but this was important for me. Writing is my tool for accepting myself and dealing with my inner feelings. Saying goodbye, even if only temporarily has been the hardest thing for me. It hurts. My brain is trying to process and put all the pieces back together in a way that makes sense and doesn’t hurt. I am trying to throw myself into other things but due to other circumstances this has proved more difficult than I envisioned but I will continue to try. I will focus on the good things and know that they are always part of my life. I am always always here for them if they need me. I just hope that they don’t forget me. I guess that’s my biggest fear. That I will no longer be an important aspect of their lives anymore. They won’t need me but I will continue to need them.

I love you girls three thousand, I love you more and it is not possible for you to love me more (I win this time!)

Being autistic doesn’t stop happiness…

So the last couple of weeks have been a whirlwind of emotions for me!

I honestly never believed that the conventional aspects of life and romance were going to be something I could ever achieve such as living with someone or engagement as this would mean someone would need to be willing and able to put up with every single aspect of my autism which I know is a big ask for anyone, some days it feels like a big ask even for myself. I know I can be frustrating and annoying and hard to understand at times let alone the melt downs, the intimacy issues and every day struggles I have discussed. The evidence just pointed towards the idea that I would never get a happily ever after in fairy tale traditional sense that I always strived for.

But here I am today writing as an engaged women who is on the cusp of purchasing her first home with an amazing, caring and wonderfully understanding man. I always thought I would end up ‘settling’ with anyone that would put up with me but I am with a man I truly adore who cares for me and knows just the ways to help me through tricky moments and accepts that sometimes I just need space, or my headphones or an immersion to help me through and is there for me unquestionably whenever I need him.

The proposal was perfect. Nothing too flashy or in front of people which would have just been too much for my overstimulated mind to process. It was just us and perfect. The ring is 100% me. Not necessarily traditional. It’s got a topaz centre and tiny diamonds surrounding it and is just perfection for me. My favourite colour and a reminder of how well he truly knows and respects me.

Our flat is even more perfect. I cannot wait to build a home with him. I know this won’t come without it’s own challenges and is a lot of change for me to contend with but I couldn’t be happier. I have been waiting what feels like forever to have a place of my own and I cannot wait for this new chapter of my life to begin. To make something which is ours, where I can live without fear with an official address filled with everything I love. Some place where I can have friends and family come and visit me for a change. Even possibly stay over like I have stayed at theirs a gazzilion times. I can feel like I can support others and not be the person always needing support and a place to escape. Right now my life is feeling amazing and I am not accustomed to this utter completeness. I know things will be difficult at times but I know now I have security.

The sweetest comment I think I received (and I thank everyone who has commented so far it has been utterly amazing reading everyone’s comments and thanks) was from my younger sister. Her level of love that shone through for the both of us and her comment about sharing her Tam Tam with a man who makes me so happy, and my favourite aspect of all being her favourite superhuman. She looks past every part of me that I dislike or struggle with and sees this superhuman that she looks up to. I never thought I would be the person that anyone looks up to or sees in this way but she makes me want to be the person she sees. The pressure to be perfect for her is intense and scary and I never want to fail her but I know how much she loves me for me and I hope she knows, as I hope all my sisters know how much they mean to me and that I am always there for them.

Right now I see how much being autistic doesn’t mean you can’t have everything you want in life. Yes it may be more or a struggle at times and there are things that unfortunately people will never fully understand and therefore never accept but I know I have overcome the world to be where I am today. To understand and feel true love. I am proud of the women I currently am and strive to help others and myself continue to flourish through every up and down along the future path…

When I ‘forget’ that I am different…

This Friday at work showed how difficult my autism makes reading situations. It was a really hot day which naturally just make the children a little more emotional and testing than normal which is normal. Turns out it can also make team members feel a little more irritated and stressed too, especially with the added additional testiness of the children. By the end of the day my team were feeling things, they were discussing how stressful the day had been for them. I felt awful. I hadn’t felt the stress that they had. The heat wasn’t bothering me, yes it was hot and sweaty but I couldn’t change that and it wasn’t effecting me too badly. I didn’t think the children had been too bad, and to be fair I knew they were feeling the heat and that it effects them. Yeah I wouldn’t say it was the easiest day with them but they are children they are allowed to have days like that, just like adults are and do. My team were really effected by all of these things and really feeling it. I just didn’t understand. I hadn’t noticed the same things they had.

Once again I felt like a social failure. I know it should be a positive that these things didn’t bother me in the same way, and deep down I know that it is. It is what makes me good at my job. It is why I don’t get as stressed out, I am in no way saying that I don’t get stressed, of course I do. Just things like this don’t stress me out easily. It’s because of the way my brain is wired. I hate not understanding other people and how they feel. I hate not being able to see what causes them pain, what stresses them out. I don’t necessarily want to feel things like they do but I do want to be able to understand it. To work at preventing these things for them, Support them, that’s my job. I am there for them to lean on, talk to, try to take away the stress.

They were all sitting there discussing it, subtly of course because of the children but I could at least do as much as read how stressed they now were. I couldn’t contribute to this conversation as I didn’t feel the same way but yet I didn’t want to make them feel bad. I could feel myself starting to feel emotional about everything, my eyes welling up. I took myself off into the children’s bathroom in a pretence of getting something so that I didn’t show my weakness to everyone or make them feel bad or more stressed.

Well I put myself together, came back and dealt with the current situation got everything moving and began getting ready for the final part of the evening. One of the team members then came up to me and asked me how I stay so calmed and how nothing seems to be bother me. Of course my first response was that the heat doesn’t really bother me which is true. I didn’t know what to say. Was it good or bad that I didn’t feel this way? I knew I was going to cry again. I knew explaining was the best thing I could do. Well at least try to. I told her I was sorry for not feeling or understanding the ways that she does and that I hated not seeing it in the same way sometimes. She of course didn’t want me to get upset or to feel that way and that it wasn’t my fault. I pulled myself together we laughed it off but I was still feeling bad about it all.

When I got home that night I still couldn’t stop thinking about everything or feeling it so I messaged the team member apologising again. She told me not to apologise and that talking with me really helped, made her understand me more, understand my autism and realise what I am dealing with every day. I guess even sometimes I forget about what I am dealing with. I am so focussed every day on doing my job in the best way that I can and focussing on the role that I have to play that I often forget or am even shocked when I am challenged with my autism. I forget that I see the world differently sometimes, that my brain doesn’t work in the same ways. Yes this is a positive especially in the situation of stress at work but being different from everyone isn’t always an easy pill to swallow. It still reminds me of how much I do have to fight for my place and how often I do have to prove to others that my autism isn’t a ‘problem’ an ‘issue’ and that it wont make me fall apart or that I’m not as good as everyone else. I am. My autism makes me unique, yes, and I struggle so very much but being unique also makes me able to deal with situations that others cannot.

You are perfect to me…

This weeks post comes based from Pinks concert that I went to this weekend. Let’s begin with addressing just how amazing it was and what a good show she puts on! Wow how that women can sing and spin around trappezing through the sky is absolutely astounding! The concert, well, it was more than that. She reminded me and reinforced within me just how much we should respect, accept and love ourselves. She played videos talking about empowerment and how we shouldn’t be afraid or knocked back for being who we are.

This post is a shout out to everyone who is on the autistic spectrum, every parent, carer, lover or friend of someone whom is autistic. “Pretty pretty please don’t you ever feel like your less than perfect, if you ever ever feel like like your like nothing you are perfect to me!” (From Pink song perfect)

You are all amazing to me, everyday is a constant struggle, a battle at times but keep pushing forward. Keep fighting for acceptance, for understanding. It is worth it. Every time someone has understood even the smallest part of who I am. Every time someone has liked my blog post, encouraged me to do more, used my autism as a positive, proud moment has changed me. It has empowered me. Made me want to fight for more. For everything. For everyone. I wish I could do more. I am an amazing person and you all are too. Autism is complicated but it is not to be feared. It is to be cherished, to be nourished, supported and you will see the wonderful, life changing person underneath the struggles.

Visiting the dentist…

So yesterday I had to visit the dentist. I have been having some pain, I knew it was my wisdom tooth but I was hoping I could ignore it and it would go away. It soon became apparent that I wasn’t going to be able to hold off going. I was not even registered at a dentist. Have not been in about 7 years since my last wisdom tooth got infected.

The thing is its not that I am scared of the dentist or anything, the pain the procedures and really the noise doesn’t bother me its the fact that they have to get in my face, have to be so close to me. Which if course they have to do they need to look at my teeth but it doesn’t mean I have to like it. Also if I don’t have a problem, like no pain then I just forget about the dentist. Its not something I am particularly interested in or anything so it just slips my mind. It also costs so much that I do not always see the point in paying out for it, which I know isn’t the right attitude and I do appreciate what they do but its just another excuse not to go.

Anyway I managed to get an emergency appointment for the weekend which made me feel much better as it would stress me out having to have an appointment in work hours. The receptionist was very nice and my partner came with me to support. Well I went upstairs with the dentist and I sat in the chair like she asked. I had informed her that I was autistic but all she really cared about was if I was on any medication. I felt nervous, twitchy but manageable. The dentist began looking at my teeth and everything was fine, then she walked over to her computer and started talking dentist language, none of which I understood. She was doing this for ages and I had no idea what was going on, or what I was meant to be doing. Should I continue to lay here? Am I meant to sit up now? She just wasn’t very forthcoming with any instructions or directions and I could feel myself beginning to struggle with this. I was stimming by rubbing my fingers in a certain rhythm and I could feel my eyes starting to well up.

Finally she came over and said we would go for an x-ray. This was fine. We went down and she told me to bite down on some part of the machine and to stay still for the whole time. I did this. When she came back in after the machine had stopped she looked at me and was like you can stop biting down now. A rush of embarrassment came over me, of course part of me knew I could stop when the machine finished but she had said I had to stay still so I did as instructed. We went back upstairs and she went back to the computer, I again didn’t know what I was supposed to do. Did she need to look at my teeth anymore? Was I finished? so I just stood there next to the chair. Eventually she turned round and said “can you move so my nurse can get through and come back to me.” Well the nurse had just been standing against the wall across from me, she could have also gone round the other way very easily. She hadn’t asked me to move or said excuse me please at all. Once again I felt embarrassed. She told me to sit on the chair. There were two chairs in the room. The main one where I sat before and one in the corner. I didn’t know what one she meant but I didn’t want to mess up again by not following her directive. I already felt like an idiot. I sat myself on the main chair, but then I wasn’t sure if I should sit with my back to her, because that’s rude but the way the main chair faces, plus was she going to do anything else to my teeth? Did I need to be able to lay back again? I sat sideways so I could see her but this didn’t feel right. She continued to type away on her computer and then finally spoke to me. Telling me what was wrong and that I would need to book another appointment for treatment. Then told me I could go. I politely said thankyou and left.

Now I am left knowing that I have got to go back and deal with all of this again. I just wish she was a bit more forthcoming with what she wants me to do and with information. I know that I should just ask for this but I feel silly for it. I feel inadequate for not knowing the expectations or what she meant. Well my next appointment is coming up…lets hope it goes okay!