Struggling to write, to share to express…

I have been struggling to write recently, not because I don’t have things I want to say or want to share but all the words seem to be choked up inside me, se edge but I am unable to get them out. I am used to this being the case with the spoken word but writing has always been my calming balm to help me sort, organise and share what is going on inside my head. I am struggling with the fact that this isn’t coming easy to me. I have tried writing them down in notebooks rather than through my computer or through my blog as sometimes the flow of holding a pen and writing makes it easier to get everything out to typing but it doesn’t seem to be making any difference.

I would like to be able to say that it is all just because of everything that’s going on in the world right now causing my blockage but the thoughts and anxiety I am feeling isn’t even all related to that. Of course there is a big part of it that is and that’s the easy stuff the write about I can talk about the things covid related that I am struggling with. The fact that shopping has become such an anxiety inducing task due to all the new rules (even though I like rules) and wondering each time I go what the experience will be like this time, the fact that I am hating not being at work and I am really struggling without the routine of this, the fact that I cannot see the people close to me etc. That’s easier. Maybe its because I am home and therefore my brain isn’t keeping as busy which is causing all the other thoughts to circle, for me to struggle with falling asleep and keep memories at bay.

Usually I would claim that one of my favourite aspects of my autism is my memory. I can recall events and moments from my life with such detail still even if it happened years ago. Right now this feels more like a curse, memories swirl around my head and things that happened long ago, and not so long ago are constantly in my mind. This isn’t to say that they are all bad memories, even if they are often related to people I miss and wish I still had in my life the actual memories themselves aren’t necessarily bad. It just means that my brain doesn’t seem to be shutting down as easily. It’s also hard when I communicate with people about these memories and a lot of the time they cant recall, or aren’t really bothered as it happened so long in the past. These moments still mean so much to me, because they don’t feel like they happened forever ago, the feelings I had at the time I can still recall now and therefore the moments still matter to me. They still feel like a big part of my life even if to others they are just an aspect of their past now. Anyways, lots of blabber there but basically this has resulted in my head feeling remarkably full with feelings and memories and thoughts that I just cannot express in the way that I want or need to. Even whilst writing this I am struggling to put into words and explain exactly what I mean. I apologise now for the lack of sense any of this blog has actually made. Hopefully I will be make to normal soon, able to write what I desire.

This should be the prefect opportunity for me to write, I have all the time in the world right now and writing would prevent the boredom and keep my brain busy.

Anyways, continue to stay safe, stay well.

Missing you…

The feeling of missing people is one feeling I particularly struggle with. I think that this comes down to how in some aspects, once I have moved on that’s it I’ve moved on. I do not know what to do with the feelings like this. I cannot put into words exactly how it feels and I do not know what to do to make things feel better. How can I take away the feelings I have when I am not in a position to see the person/people?

Right now, I miss my sisters. Until now I have done well with these feelings and not had them bother me too much. Obviously I have missed them and hate not seeing them all the time but I have coped with talking to them, messaging them and knowing that they are happy. This weekend I am feeling it. I think this has been enhanced by the feelings I had within last weeks blog with missing friends.

It has suddenly become real that this will be the first ever Christmas that I will spend away from them completely. I know in theory I could go over to them, but at the moment with me moving into my flat and everything I just don’t think I will be able to afford it this year.

I have spoke to Maddie and Morgan quite a bit and honestly this really helps, hearing what they have been up to and video calling feels like I am with them. I haven’t spoke to Tegan so much. I understand, but I miss her. I miss cuddling up with them all on the sofa, talking about superheroes or school, playing board games and the playstation with them. Even just sitting beside them basking in their presence.

It is not their fault in any way, it isn’t anyone’s fault. I am immensely happy and proud of them, I really really am and I would not want to take this opportunity away from them. I just wish it didn’t hurt so much to do so. I wish I knew what to do and how to process the feelings so that it wasn’t like this. I hate changes in routines and this has been one if the biggest I have had to endure. Just when I think I had accepted the fact that they had gone I am hit with the realisation that I will miss their birthdays, Christmas, I cannot go to school plays.

It makes me want to cry, retreat, curl up and immerse and stim so that I can forget about everything, but then night hits and my head is filled with trying to process it all. Its making sleeping difficult. I think this is also due to the fact that everything is changing right now and I need things to begin settling down. I need to build my routines and normality again so that it isn’t constantly in my mind. I love my sisters so so much, they turned my life around.

Trying to Juggle the changes in my life…

Right now there are some big changes happening in my life. This is a huge thing for me, and I know it would be for a lot of people too. I am weeks away from moving out into a flat with my amazing partner. This is most exciting thing I have ever done.

Ever since I was 16 and I realised how bad things were with my parents and felt like I had to stay from place to place I have wished for a home of my own. The rush of all this is exhilarating and I honestly never believed that I would be in this position in my life. Unfortunately I am a very impatient person when it comes to things like this. If I had my way I would have packed all my belongings up and be beating down the door to our new place to move in. I am really struggling with the waiting of it all, it is such a long process and the problem is they can not give any real time frame for anything. I would be fine if I had something to count down towards but I can’t do this. This makes everything feels even more intense. Everything buzzes inside me and I just want to get everything sorted.

The thing I have struggled the most with is wanting to buy everything for our place. I am obsessed with how I want the flat to be and what things we need. My partner has been more practical about this and wants to wait till we know a date and move in, especially with the larger items. Which totally makes sense I know but I want it all now. I want to know that I have everything ready, be able to set it up as soon as we actually have the chance. I can picture how I want everything in my head and I just want everything to be perfect. This also isn’t practical, to begin with we are better of using the things we already have and then building on furniture once we already in and not to spend all the money we have carefully saved over the past months. Also once we can access space a bit better too and know how things are going to fit and look in the space we have rather than basing all my decisions from the photos and measurements that I have. It will be much better when I can actually see everything where I want it properly. Finally of course ordering when we are in makes most sense as this will be less things for us to have to try and move and fit into the cars. (Yes this has been me convincing myself as much as all of you…)

Then there is the other side of the coin, once the adrenaline takes a moment to lower and I realise what a big change this is to me, to my routine. This will mean I have to create a new routine a new normal. I am prepared for this and know that overall I will be fine but this is going to take some getting used to. I know at some point this part is going to affect me and the autism aspect that doesn’t deal well with change will have something to say about all of this and chances are there will be a moment where I have some level of a meltdown but I know that Justin will be there to support me through this, he will not judge me for this or think he has made the wrong decision by living with me. He will make me feel safe and secure.

He has already discussed that he wants to make the place as comforting and sensory friendly for me as possible. This is how much he knows me and accepts me. This is part of how I know I will spend the rest of my life happy with this man.

Other things that are changing in my life is my ability to juggle everything and everyone I care about. As much as I absolutely love Justin and our amazing life together and I wouldn’t change a single aspect for anything but trying to make time for everyone else that I care about has been difficult. Most of this comes down to not Justin himself but the way that I am and process everything. I like to know exactly what is what. The routine of everything. Therefore I have an annoying habit of everything in my head needing to be planed in advance. This means if Justin has already said about dinner for certain days then I will struggle to adapt and arrange to meet up with others. Not because I do not want to see them because I absolutely do so so much but trying to change things round in my head feels very messy and mixed up and I cannot turn my thought process around, resulting in anxiety with the fact that I cannot make everything work or figure it out.

When making time to see others I will plan it in advance so I know what is happening, even this can sometimes cause anxiety because it breaks routine. I like routine so very much. Therefore if I could plan to see certain people on certain days every month for example the first Wednesday of the month or every other Saturday and stick to this routine then everything would be much easier. Unfortunately this is not how other people live their lives and I could never expect them too. I don’t know how to fix this though or to make this work and I hate it. I do not know what is best. I hate that I feel like I am loosing the other people who are close to me because my autism means that I cannot handle trying to change the routine of everything. This makes me feel like such a failure. It is not difficult to plan things week by week. Day by day even, but even if I do not have anything in particular planned and someone asks me in the morning if I would like to meet up with them I still battle with myself and cannot bring myself to do it. Because it wasn’t planned in advance. It wasn’t what was supposed to happen on that day. Even if this means that I sit and do nothing spectacular I struggle to change the plan of well doing nothing. This whole thing probably makes very little sense, I am trying so hard to try and articulate it but it can be so difficult at times to show people, to get them to understand that I am not just being stubborn or melodramatic or un caring in any way, in fact it is the opposite in some ways. I am overthinking, trying to keep everyone happy, struggling to understand how to fit social norms in a world where I know my way of thinking is frowned upon and seen as a derogatory way of dealing with situations, anxiety that is crippling and end up hating myself for the fact that I cannot just handle this like everyone else seems capable of doing.

I am hoping when I move into my flat that this will be much easier for me to mange too. I will not have to feel like I need to split my time between everyone quite as much as I do now because the end routine will still be the same. At the end of the day I will still be going home to the same place, to see Justin. I will not have to feel guilty about missing an evening with him and therefore not seeing him as often. I will be able to just pop out and know that things will be exactly as they should be and need to be when I return. I only need to adapt one aspect of the day rather than negotiate what feels like my whole live, Justin can do dinner for himself because the food will already be in the house and we can use it another day rather than the fact that we get dinner in now and I feel guilty if we don’t stick to the routine of what we have planned, for his sake as well as my own. I will not feel like I am splitting my time with him because I know he will be right there when I return. Again this possibly makes very little sense but its how my brain is currently dealing with and processing everything.

I apologise for the mis match of this weeks update but if anything this shows just how much my brain currently buzzes with everything that it is dealing with and how and why I sometimes respond how I do, and I would like to say these are the only things that it is processing but there is even more that I haven’t touched on as I could go on forever and well that would not make for great reading.

Seeing the world differently can make things hard to understand…and make it hard to like me.

This week has really hit home to me how seeing the world so differently can make me feel. There are times in my life that seeing the world from my perspective is a positive and allows me to deal with things differently. It has helped me to get through issues such as my childhood and I believe allows me to be the practitioner I am at work, who will do anything for the children within my care and always give my best to them.

Then comes the time where seeing the world differently makes everything so difficult and so hard to understand. Knowing the right thing to say or do and the uncertainty of how overs will take what your saying or doing and judge you.

I give everything to the things I care about and that isn’t always a good thing. I will stand up for what I think is right even though it gets me in trouble or causes more issues for myself. I know some may say this is good as I stand up for what I believe but it isn’t always good. For starters I can be seriously stubborn in my beliefs and views and struggle to see others points of views when my head is set on something. This means that it can be hard to get through to me and rationalise with me or help me see the others point of view no matter who is wrong or right. Once I come to a decision there is a very good reason I have reached it so trying to turn me around on it is near on impossible. I am not by any means saying I am always right but I usually have a very good reason for feeling or believing what I do and getting me to see otherwise is a difficult task.

I’ve been told that this makes me a very difficult friend. That I can bring people down and it can be hard having conversations with me and support me whilst I am in this mindset. I do not know how to take this. I cannot change how my brain works. I have tried in the past before accepting myself. I am sorry that I am difficult in this way. I really am. I have spent my whole life scared to be honest and talk about things because I was afraid of how people would take what I am saying and that they wouldn’t understand me, I guess I have always known I don’t see things the same as others, neuro typical’s,  even before my diagnosis. For years I strived and pretended, mimicking behaviour and trying to fit in, unsuccessfully and couldn’t fathom why I just couldn’t be like the people around me. Why I found it so hard to understand them and why I couldn’t let go of things or dealt with things the way I do. It still makes me sad that I can be this difficult. I do not do it on purpose or to make things harder. It’s the only way I know how to be. It’s the only way my brain works.

Secondly, I expect others to be the same. I stand up for my friends no matter what and I get very upset if they wouldn’t or don’t do the same for me. Not because they don’t care but because they look at things from every angle, every aspect. Can see both sides of a story or think of the consequences and do not want to get themselves into trouble or make the situation worse for themselves. I cannot do that. I don’t think or care about the consequences at the time. I will stand up for them, say my piece if I need to and then end up taking the brunt of it come back at me. For example there was a time where online someone’s partner but a comment on about my friends children. It wasn’t anything major and could have just been ignored to not cause any further issues and in fact this is what my friend decided to do. I couldn’t do this. I was outraged and had to make a comment. I was not nasty or mean or anything but I couldn’t just let it slide and I would do it again in a heart beat even though I was the one that then got moaned at.

It is exceptionally hard to put this into words without naming particular occasions and I wouldn’t want to people to feel names and shamed because that is not what this is about. It is not about going through and saying all the times where I thought people could or should have stood up for me more or anything it is merely about explaining my side of life and how difficult this particular social aspect can be for me. I have been taught that you do anything for those you love and care about and that they always come first and you should stand up for them…yet apparently this isn’t always appropriate or the right thing to do or way to go about things. How am I supposed to understand the grey area in between and know when I should do or say something and when I should just let something slide?

This week I am feeling negative about this aspect of my autism and that makes me angry too. I know its who I am and that I am striving for autism acceptance and hating myself feels like I am letting myself down but it also highlights just how difficult autism can be. I am not raising awareness because I think that everyone should change their way of thinking to my way, or anything like this. I am raising awareness but it is important to understand and acknowledge how difficult and trying everyday life can be for someone on the spectrum, and the things that you find annoying about them may be the very things that they are battling hardest to understand. ],(o.__

Autism in females…

Obviously this whole blog so far has been about Autism in females in a sense, as I am female but I believe it is important to understand and accept how different autism can present when you are female, or even higher functioning if that’s what you want to call it.

Even though autism is more widely accepted or understood now than what it ever has been before there still seems to be missing or fear in diagnosis in those who don’t scream autism just by looking at them. For those whose signs are less obvious or are better at masking certain aspects. There seems to be a fear within society that suggesting a child or adult may need support when the condition isn’t clear to diagnosis will cause more issues, or upset to the person and the families. As a person who was not diagnosed until adult hood I can assure that although there may be some resistance, denial or anger to begin with in the long run that early intervention is much more important than worrying about what a diagnosis may be or what the families may think or how they may act. It should be easier for these discussions to happen without nurseries, family members or professionals worrying about. I believe that this comes down to peoples understanding and knowledge especially when I comes to conditions such as autism.

Lack of knowledge on the different ways which autism can present itself often make it difficult for people to see or acknowledge some of the signs and can often lead to misunderstanding, thinking someone is merely withdrawn, have behavioural issues etc. I believe this is seen much more with females. More education needs to be given on how autism can present itself within females and the importance of noticing these early signs to allow for the early intervention which will allow support needed to be given, to prevent them growing up in a world where they do not feel understood like I have. To me this isn’t even about the importance of having an actual diagnosis, at the end of the day a diagnosis although an important thing for me, for many is just a word. It is more about the support and understanding for that person than the title of a diagnosis. Therefore even if you do not want to make the call on an autism diagnosis it is important that support is still in place. Ignoring the issue will not make it go away and will not make it any easier for the person to learn, progress, and feel accepted in this crazy world.

I began this as a way of expressing myself but would love to be able to use my experiences and my knowledge to help educate others on how autism presents in females. The lack of knowledge and information in regards to autism in the female population amongst professionals means that many have and will continue to slip through the cracks. I would love to go into schools and nurseries to help promote this understanding and to support families with noticing signs.

I think one of the most important things to remember is that girls will often mask signs and symptoms and are much more adept at imitating others, especially within social situations. As this social aspect is such a huge aspect of an autism diagnosis, it can therefore be more difficult to see the struggles females have in social situations. Girls often want to be more social and therefore understand the benefits of social interactions and often mimic behaviour of the people closest to them. This doesn’t take away the difficulties they have and how understanding different social cues is still a battle. This often results in signs of anxiety and/or depression and with a diagnosis relating to this or personality disorders being given. This was certainly the case for me and then I felt like a failure when none of the medication, treatments or therapies worked for me.

Other signs include:

  • The obsessive and immersive nature I have discussed before, from a young age this can present as obsessions, collections and organisations over toys as well as characters.
  • Toys being friends. Having relationships with cuddly toys for example. Talking with them, creating little worlds and repeating and playing these games over and over.
  • Many people assume that people with autism have a lack of imagination due to the rationality of the way their brain works. This isn’t the case at all. Especially in females on the spectrum. In fact it often can be the case that their imagination is ‘too much’. They become a character for an extended period of time, staying within this role all day at times. Girls will often have a very active imagination, loving mystical and magical books and characters. They may also have imaginary friends. For me I would talk about my ‘family’ and ‘children’ that I had from my imaginary games. I could talk about these as if they were real.
  • It is not always the case that we don’t like physical touch (although this is often true at times.) Sometimes the sensory issues can mean that we seek tight hugs, can be needy in being close to others, often not respecting boundaries and for example standing too close.
  • High functioning girls often immerse themselves in books and reading. For me this was due to these worlds being easier to navigate, expected to be immersive. I especially love books that come as a series so I can become part of their world, or fanfiction about characters I am obsessive over.
  • Females can be very emotional. They often have great empathy but lack the ability to deal with all these emotions.
  • Finally, we can be social. Especially due to the ability to mimic behaviours but following this may isolate and need a lot of time alone. Sometimes I just need me time, even if I feel lonely. I can want someone to be with me but need them just to be there and let me be myself, not too close to me, not talking to me too much, just being around.

I hope that some of this gives a greater understanding. I think it is important that we prevent as many females slipping through the cracks as possible. No, it may not seem as bad as how others on the spectrum but it doesn’t take away the struggles that we do have. In fact people have a higher expectation on you to be ‘normal’ respond like neurotypicals do and people tend to have a lack of empathy towards our feelings and reactions during situations. This needs to change. Do not take away the difficulties that I have just because I do not look ‘autistic’. I can assure you I am!

conquering my past…

So today I had to do something really difficult. With my own impending move I decided that it was time to revisit my childhood home and collect anything from there that I want to keep. My relationship with my mother is strained at best and I haven’t been back there for 7 years, which was only to collect a couple of things I needed. I have known I needed to go back for a while now but have been avoiding it in an attempt to protect myself but I have only been holding back the inevitable and building myself up over it more than I should.

I decided last weekend to just bite the bullet and ask my auntie to arrange it for me. This week in the evenings I have been very on edge, grumpy and short and I know it. Sensory wise I have been against touch and aggravated by little things like being accidently brushed against more than what I usually am. Sleeping has been difficult and I have felt more emotional, feeling upset over silly little things.

This morning I was awake really early, and didn’t sleep very well. Dreams plagued me and I didn’t feel at all rested. My partner and I got ready and made my way round to my mothers. When we got there she greeted us but thankfully disappeared into the living room leaving us to it. I am glad I really was not up for conversation when it would only be fake and forced. I am not very good at pretending that things between us are okay and create conversation because it is the ‘nice’ thing to do. Not because I am horrible or anything like that but I just do not like being fake. I feel like a hypocrite. How can I say that I want nothing to do with her, that she has had such a negative effect on my life that I cannot put myself through having her in my life then how can I pretend to be okay when and if we occasionally cross paths. To be honest it hurts more to pretend. I know this is controversial for a lot of people. The way they see it is we only get one set of parents and we should love them no matter what. Neither of them have done anything to deserve that title or role in years and years. They were the adults and yet I was the one that suffered growing up. Now I am the adult and I have to make the decision that’s best for my health, not for theirs, they never did that for me and I cannot risk loosing myself because of them. I am making a decision which of course has been exceptionally difficult. I have always hoped that they would prove me wrong, tried to be the bigger person and let it be but if they are not willing to put in the work, try, make an effort then why should I continue to put myself through disappointment and immense pain over something that is never going to improve. They are an aspect of my past. They will never be part of my future in any way. I know this hurts some people but for once in my life I am deciding to be selfish.

Being back in my childhood room (even if it was just a collection of boxes, bags and old furniture now) bought back a lot of memories both good and bad before I even had a chance to look through anything. I had made the decision that this needed to be as quick a process as possible to help me make it through. I felt overwhelmed with feelings from the past pouring over me but decided throwing myself into sorting things was for the best.

I started with my small collection of books, easily deciding what ones I wanted to keep and what ones to leave. Next came the hardest part of the whole process. My collections. My obsessive, immersive behaviour is something I have battled with for as long as I know, but some of my worst, most prominent were stored within this moment.

Lets start with my biggest immersion I have ever had, atomic kitten. This room was once covered wall to wall, celling and doors with pictures of the singers, no matter how big or small they were. These had long ago been taken down and placed in a very large bag. Going through these were utterly bitter sweet. Remembering how much these meant to me made me want to fall straight back through the rabbit hole and immerse myself in them all over again. I knew I had to be brutal with myself and not let myself do this. I have kept all the signed memorabilia that I have and a few odd mementos.

Next came all my csi, charmed and greys anatomy collections which is a lot less but still a significant amount of magazines, photos, posters etc. Again I really wanted to take a lot of it with me, especially all the magazines but this just isn’t sensible or feasible given that we are moving into a flat. I also had to keep telling myself, I have survived without these things for many many years now, they are not essential only desirable. It was hard to walk away from them all but I am now strong enough to do it. Especially with the support and strength of my partner, and his ability to say no we do not need that.

I also found lots of old photographs of my sisters when they were babies and young children which I was really happy with. I am so happy to have collected these again. These are the moments that I wanted. I know so much is digital now a days but flicking through photos will always be something I enjoy.

In the end we didn’t take loads from the room, but I have taken enough. I am happy walking away knowing that I have what I need of my memories, all my photos from the past and some memories of the things I have loved before. I am immensely proud of myself for doing this, especially for being strong enough to walk away without everything. There is a time not so long ago where I would not have been able to do this. I would not have been able to leave anything behind. Obsession would have controlled me, but today I won. I made sensible decisions and not only that but I feel happy with it. I am not sitting here thinking about all the things I wish I had collected. Of course I still have obsessions and immersions now and I do still like to collect. I have shown and proved I can be more controlled over this.

I was polite and informed mother that we were done and leaving and that everything that was left she could now just get rid of whenever she wanted. I shut the door on my past and can now focus on my future, on the life I am building with the love of my life, with my amazing friends and the family that I do have in my life. My future is always going to be full of additional challenges, prejudice from others, feeling inadequate at times. I will always love and hate my autism at times but I have a lot of things to look forward to, and to celebrate these moments with the people whom I love with all my heart. I love you all 3000. Always. xx

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!

Being honest and my inner demons…

So this week hasn’t been the easiest for me. Sunday evening resulted in a large Autism meltdown, justified, but still hate having them. It left me feeling drained, emotionally and physically, exhausted and with a rather large bruise to show for it on my arm.

Obviously the people close to me knew exactly what the bruise meant right away, but this is the first time I haven’t tried to hide the fact from everyone else. Normally I will make up some excuse, for example that I have hit it at majorettes, walked into something or just say I’m not sure how I did it. I always thought it was just easier, less explanation needed and honestly, I was worried about the judgment. Worried that people would take it as self-harming, think I was doing it for attention or that they would think I was falling apart and couldn’t cope when this isn’t the case. It isn’t as simple as that, and its not self-harming in a typical sense. This time round I decided I couldn’t do that. I couldn’t lie about it and say it is something it isn’t. Not when I am doing this, working so hard to raise autism awareness, work on my own autism and want acceptance for myself and everyone else who is on the spectrum.

When people have asked me during the week, I have told them the truth. I haven’t hidden the fact I have bitten, how can I when I have previously written about it in my blogs as something I do. If I created a lie then there would be speculation anyways. Amazingly this time everyone seems to have been fine with it. Of course, not happy, even I am not happy with it, but I know I cannot help it and I cannot now change that I have done it, but everyone seems understanding of it. No-one has questioned my performance at work or suggested I am in any way not coping and to me that is a relief. I hope it’s a start. Admittedly I would like to wish more that I never had to feel that way and go through it again but I know the chances of that are near on impossible. Acceptance and not seeing me differently is a very good start. One I am happy to take as progress.

The end of the week I did manage to achieve and do something I really struggle with though. I went out on Friday night with some of the girls from work for a few hours. I haven’t been out with them much, purely because I panic and struggle to build myself up to go but I managed it this time. There were about a gazzilion times where I wanted to pull out of going and seriously considered it a few times.

I wish I could explain how difficult it is sometimes. I can have all the want in the world to do something but the panic of the unknown plus the disruption it creates to my routine just makes it feel like hell inside. I know once I am out I am usually okay, have a good time even but its never easy. I purposely said I would attend for only an hour or two so I didn’t pressure myself to do anything more if it was too much but I have to admit I genuinely had a nice time and I enjoyed spending time and chatting with them all.

The girls I work with are all so lovely and understanding and I genuinely don’t feel judged at all by them. I think part of that has been my honestly from the beginning. I haven’t tried to hide a single aspect of myself or how autism affects me. I have told the truth about every last sometimes horrible detail and the stuff that makes me great too. I don’t want to hide away any longer. I have spent so much of my life just trying to fit in and become everyone else’s version of norm because it was what I thought I needed to do to be accepted, to progress, to show my strength but actually sharing this, the real me letting my autism be seen and not hiding it away in the shadows is real strength. Not accepting the arrogance and bullying from others because of things shows my real character and inner strength and I am finally proud of the person that I am. Its not easy by a long shot and the way people treat me or comments still hurt like hell but I am proud to be standing up to everyone, including my inner demons.

How autism has helped empower me…

When I got my diagnosis I wasn’t scared at all, in fact I was relieved. I wasn’t just this crazy person who struggled to be like everyone else was. It wasn’t that I couldn’t do things it was that it may be more or a challenge to achieve certain things. I can deal with a challenge. Feeling like things are impossible and you just aren’t sure why is much worse. Having autism isn’t easy of course and not everyone understands it but at least I can try to explain it to people now, I couldn’t explain something when I didn’t know what it was. I went through a selection of different diagnoses before finally arriving at autism. Depression, anxiety, cyclothymia, personality disorder, OCD, but not one of them fit everything I was doing or feeling. None of them explained everything, which made me feel crazy, like I had every condition going and how was I ever going to manage them all.

Being autistic challenges me every single day but I know myself now. I am okay with my likes and dislikes and how I may need to adapt in a world where things are every changing and not easy to understand. It has taken me a few years to reach this spot with myself and I know there will be more challenges and issues which arise over the future for me. Working in a nursery has showed me that although to support children whom have additional needs a label of their condition isn’t necessary as it is dependant on the support I put in place for that child which is the benefit, for an adult having a label allows for acceptance, understanding and knowledge. People accept that children will learn at their own pace and will need support with additional needs and that early intervention and understanding is what children need. As an adult people aren’t quite so accepting. You just end up being ‘weird’ ‘different’ or ‘crazy’ when you don’t conform or do things as others expect. The understanding isn’t there that adults have and live with these conditions. Especially when it is not as obvious. People don’t expect me to say I am autistic and therefore I feel the need to justify myself, my condition. No-one truly understands the everyday struggles that are involved, rather than saying I never would have guessed for once I would like someone to look at me and understand that I have battled to get to this place in my life, that I am proud of the women I am continuing to develop and become and not hunt for the truth of my statement, as if having autism should be as obvious as having a second head.

Over the years I have had many people say to me that they are proud that I didn’t turn out like my parents, I am not selfish or an alcoholic. Honestly, I thank my autism for that. My brain isn’t wired that way. What would have been an easy road for me to copy and travel down because of them wasn’t part of my makeup, my DNA. Yes there are times when even I think that road would have been easier, not caring about anyone but myself, drinking away everything I was feeling or coping with, having sex with whoever I wanted wherever and whenever but overall I know that the person I am now is better than the people they have become. My autism is what made things more difficult for me but stopped me becoming the people I hated more than anyone. The people I always said I wouldn’t be like. It pushed me to prove I could go to uni, it made me have to wait until I was comfortable and with the right person before considering settling down. It made me focus, made me obsessive which helped me to get through my childhood, allowed me to immerse. In many ways autism saved my life. It has also very nearly killed me but overall, I wouldn’t have ever got to stage and places I have in life without it. I am glad that something happened which resulted in my brain developing differently. It means I have been given a chance to be a good person. To create my own footsteps, to hopefully leave a path that in the future my sisters or my children would be proud to follow in.

The idea of having children…

I often think about what my children if I ever have any will be like. For as long as I can remember I have told people that I want to be a lady with a baby. Honestly I had given up on the idea of having children of my own. Am I even equipped to be a mother really? With everything I battle every day between the autism and the mental health issues. I also didn’t have very good role models in this department so what gives me any right to bring a child into this world? I used to worry heavily about what I am going to pass on to my child. It’s not that I have any problem at all with my child being autistic, I am aware that there is a high probability that my child will fall on the spectrum, but given the additional mental health I just do not ever want a child to feel that same way that I have. Its an odd sensation, wanting something more than you have ever wanted anything else in your life and yet knowing having it may be the worst thing you could do.

I know I am very good with children, I always have been and now it is my job and the one thing in life I thrive at but that doesn’t mean I would make a good parent. Would my autism get in the way? What If I felt a meltdown coming on? Whatever happens my child has to come first so how will I manage this? How do I balance my obsessions and obsessive nature as well as being a mum? I would like to think that these things would not be an issue but I cannot just brush them off. I work in facts and logic. I don’t have any here. I have nothing to draw on other than my desire to be the best mum I could possibly be. But I know as well as everyone that wanting something doesn’t make you good at it. I would love to be a singer but I can’t sing so therefore I cannot do that job. Just because I want to be a good mum doesn’t mean that I would be.

For a long time I wasn’t even sure I would physically be able to have children, struggling with an intimate relationship and everything, but now I am able to think beyond that side and everything about it petrifies me. Will my body even cope with pregnancy? The hormone change especially. I struggle enough before I am due on because of hormones to keep myself on top of everything let alone dealing with the changes that occur during a pregnancy.

Everyday I battle for the idea of a normal life, where I can do the things everyone else does and be accepted for the things which are me. I want to pursue the idea of having children in the future, and I know I will do whatever in my power to make myself a good mum. I accept that I am afraid and I may face more challenges than some others but I will make things work.

I had a dream last night, but before I delve into this I need to discuss my sister. She is very similar to me in many ways, the way she responds and reacts to situations and the way her brain seems to process things. When she was little I was worried that this was due to her mimicking and learning behaviour from me but over the years she has continued to see the world in a similar way to me, suggesting she too is on the spectrum. I am proud of how well she is doing with her life, and has a very supportive family (her mum, sisters, step dad, brother and myself to start). This makes me hopeful that she won’t suffer the way that I have with the mental health side of things and knowing that she will always have me to talk to, and maybe one day this blog may even help her understand certain things she thinks or feels. Anyways, back to my dream. I cannot remember much of it but I was at some centre discussing and observing a child with a specialist. We were communicating about the idea of this child being on the spectrum and how we could support moving forward, the women turned to me and for some reason I told her that I am on the spectrum and I suspect that my sister is also. She looked at me and smiled, then responded that I should have a child of my own because if they were anything like my sister and I then they would be an asset to this world. I know its only a silly dream but this made me feel better about the idea of children. Maybe my subconscious is trying to support me.

This links to another dream which I had a little while ago, I had a daughter who must have been about 5 or 6 years old. She knew that I was autistic and said she wanted to know how he was like Mummy. I was explaining to her that as I said to her before everyone sees the world and everything we do and see differently so not everyone thinks the same things or feels the same things that we do and that for mummy my brain is always working overtime, always really busy and processes some things differently which means that it makes me really good at some things which others find difficult but that some things I find more difficult than others. Just like how she could twirl a baton but some of her friends couldn’t. I then went on to talk about how something this child might find tricky was how to make friends or how to play the same way as the other children. Their brain was really busy doing other things that it might be that they preferred playing on their own or that they couldn’t work out how to play the games they were playing or what other people were feeling. I also said that some people don’t use any or many words. I can’t remember anything else that happened within the dream but it did get me thinking about if I do have children how I will explain this. Chances are my own children will at least have some autistic traits, if not from actually being on the spectrum themselves but because of any learnt behaviours they might pick up from me. I know that this wasn’t a complete description and like children I work with it would take time and support to teach children about what autism is like, especially as for everyone it is so different and isn’t as visual as something such as a broken leg. There are many things to support this now and I hope many more in the future.