Coming out

”Not everything that steps out of line, and thus 'abnormal,' must necessarily be 'inferior’."

- Hans Asperger 

This is a blog I have had a lot of anxiety over writing.  I fear being judged, I have shame around this even though I know that I shouldn't.  I feel like I have a lot going on, and people won't understand how things fit together and how it's really not that uncommon to have more than one diagnosis when it comes to mental health and that it doesn't mean that my brain is completely broken or that I should be written off. 

I have been open about my Bipolar/Schizoaffective disorder (it gets called one of the two depending on what psychiatrist I see) for years.  It's hard to hide a mood disorder when you get full blown mania at times or need to spend time in hospital, so I decided a long time ago I would be open about it and as a result I started to be really active in bashing the stigma around mental health, and this blog kind of morphed around that and me sharing my journey.  I have had so much positive feedback it's unreal.  The private messages and comments have usually always been supportive and people have told me they find my openness really helpful.  I'm honoured to be able to help even in a small way.  Sadly I have had a few nastier comments over the years.  People saying I'm making it up, I haven't really been in hospital, or that  I'm attention seeking by being so public, that it's something I should hide, or that I must bring shame on my family.  Those comments hit hard especially when I'm not doing great but I kept going because the good outweighs the bad, and the friends and family I've lost have been replaced with real friends who go above and beyond to be supportive and understanding.  I am also privileged that so many people have opened up to me with their stories that I know are not easy to share.

I am so open about Bipolar issues and that part of my life but I hold back a lot on other things that I struggle with related to mental health that are not connected to my mood.  I have a lot of issues that don't fit in with Bipolar and  over the past few months I have been going through a process of talking to my CPN and psychiatrist about these issues that I still currently face, that are not related to the Bipolar, which is now relatively stable.  My psychiatrist and CPN have felt for some time that there was a strong possibility that I might have Aspergers syndrome and so we began an assessment for that.  I am the first to admit that I knew very little about Aspergers so I was fairly adverse to the possibility of this diagnosis for myself to begin with due to my own misconceptions, but now it has been explained to me the traits that people have, all the difficulties and the quirks, I started to agree with them that it fitted perfectly to describe some of the differences I've felt my entire life, and also the problems I have now as an adult.  In the end it was confirmed that I have Aspergers and my diagnosis of it became "official" I am now in a place where I am okay with that fact.

To give a brief overview of what Aspergers is for people who don't know.  Aspergers is part of the Autistic spectrum.  At the moment (as far as I am aware) the term Aspergers is still being used in the UK but in the US and other countries its being phased on and the term Autistic Spectrum Disorder is used instead.  It is likely the UK will follow suit at some point in the future.  People with Aspergers are able to talk, and often talk a lot, but still have difficulty with social interaction and communication, reading facial expressions and body language, and they tend to like repetitive routines and interests. There is also often sensory problems such as over sensitivity or under sensitivity to sound, touch, smell etc... I am still learning a lot myself about what it entails but I will describe the things I currently have in relation to it to help you understand why I have the diagnosis.  Please note that no two people on the Autistic spectrum are the same and that goes for Aspergers too.  We are unique and as individual and neurotypical people, we have some familiar issues, but it presents differently in every person.

It's no secret that social interaction is hard for me. I have complained about this many times, long before I was aware of Aspergers, and if you go back through my previous blog posts I wrote a blog many years ago about social interaction that explains Aspergers perfectly. Yet at the time of writing it I did not know I had Aspergers, and instead I felt that even though I knew I was getting some fundamental things wrong in regards to social interaction and communication, I didn't know why.  I thought I was a lone freak with a bad personality and I just had to try harder to fit in more.  Now I know that's not true and actually that's a relief for me.  Making friends, knowing what to say, following conversations are all things I struggle with.  I over share I'm told, and if I'm asked a question I often tell the truth because I can never figure out when to tell a "white lie"  I'm much better at one to one interaction and I usually don't enjoy groups.  If people are sarcastic or use metaphors I often take them very literally, especially if its unexpected.  I can be sarcastic, but I have to think about it and often when I am it's taken wrong and as too dry, blunt, or bizarre.  I write a lot better than I speak verbally, yet my moral views are very set and somewhat black and white, and I understand now this can be offensive.

I don't like change (this is no secret to those who know me) even furniture moving around is stressful and bigger things changing like a house move, or a person leaving and a new person arriving, going to new restaurants or places, are all very unsettling at times - bordering on extreme distress.  I prefer to do the same things over and over, and like for things to stay the same, and I have my little routines of how I go about my day and I like to stick to that, and find it upsetting if something unexpected happens.  I prefer things to be planned in advance.  When new people come along my instinct is to not like them because they are new, and I don't like the unsettled feeling that gives me. I have to fight against that because usually when I get to know people I like them a lot.  I have no instinct as to who is bad for me and who isn't, so I have learned to go through logical steps to make those kinds of important decisions rather than "follow my heart".  I've made mistake by having friends that were bad for me, or who didn't really like me, and I haven't picked up on it, and as a result ended up feeling very hurt when I find out they are mocking me.

I have many sensory issues, but the main one that I find difficult is sound.  Too much noise and I'm overloaded, and feeling on verge of panic.  So being in busy places I usually can't handle for long.  I am terrified of loud noises to the point that I am phobic of them, and have been this way since before I can remember.  I cannot be around balloons, party poppers, Christmas crackers, guns, or anything that is likely to suddenly bang or pop.  Fireworks night and the lead up to it is a nightmare every year.  The anticipation has me freaking out, and I will always have to escape that situation.  I cover my ears when a motorbike or loud car exhaust passes.  I cringe with fire engines, and I seem unable to pick out voices and conversation over background noise.  It all becomes a jumble, and so it sounds like I have a hearing problem, and for a long time I assumed there was something actually wrong with my ears, but there isn't, it's my brain not having the correct filter.  Little noises that other people don't even notice are overwhelming for me to the point that I can't concentrate on anything else.  Often I have my headphones on to drown out the every day world sounds with my familiar music. 

Smell/taste are also different for me.  I am often hyper sensitive in some ways but under-sensitive in others, so I would avoid the perfume counter - where all the smell is meshed into one - but I like to wear a familiar pretty perfume on myself.  Someone cooking a meal that I don't like the smell of drives me crazy, and the worse one for me is cigarette smoke.  I seek out strong flavours in foods, that's likely why I love curry. I usually eat the same food over and over, and it takes a lot for me to try something new.  What I cook and eat is repetitive, and where I go out to eat tends to be to the same places.  Rick is always encouraging me to try new things and gradually I come round to it, but when its familiar I'm much happier. 

I am mostly under-sensitive to touch which means usually I seek out touch and want hugs often or something heavy on me like a dog or weighted blanket.  If I'm upset though, I don't feel ok with anyone but Rick or my dogs touching me.  I'm fairly particular about what fabrics I want touching me too, I hate denim, when I wore jeans I would have leggings under to stop the jeans touching my skin, and now I simply gave up trying to wear jeans because I find them so disgusting to wear.  I pick my clothes mainly based on fabric and touch than colour, and how they feel to wear, rather than how pretty they look (thankfully I have found lot of pretty dresses in nice fabrics that feel nice to wear).  I actually don't like wearing clothes on my lower half and as soon as I can at home I take them off and just have a nightie to cover my modesty :)   I love wool you will be unlikely to ever see me without a cardigan. I simply must have a cardigan on, so I can touch wool to calm myself easily, and because I feel wrong without one on.  Rick has joked that there hasn't been a single day in our nearly 6 year relationship when I have not wore a cardigan, and actually that is the truth.

(I could go on about sensory issues for pages and pages, but I think I've covered the main points)

I also have a hard time recognising faces, so if I only met you a few times then chances are if I see you out of context I won't know who you are.  I'm not being rude. (I think this is related to Aspergers).  I don't really like it when someone changes their appearance suddenly.  Colour change like hair is fin,e but a dramatic cut, or an entire new style, or losing or putting on a lot of weight, make me feel anxious until I get used to it.

I have my special interest which I think you can all guess is dogs.  I have been fascinated with dogs for 9 years now, and yes some might say bordering on obsession, but to me interacting with and learning about dogs has been a great source of enjoyment and a way to relax.  I much prefer the term 'special interest', rather than obsession or fixation. I see this as a positive trait, not a pathological problem that needs fixed, but it seems to be a common Aspergers trait to be deeply into an interest.  My life revolves around my dogs, their needs, and learning about them, oh and taking photos of them!  The only problem is trying new things is a little more difficult, as my instinct is to keep doing what I'm doing, and not venture out into something new.  Rick bought me a camera so I could learn more and get more into photography, not just dog photography.  So far I have stuck to just dogs, but I do plan on joining a photography group for people with Aspergers where the subject matter changes weekly, so that should encourage me to learn more and take more photos that are not just Sunny and Doyle.  I'm working on expanding interests a bit even though dogs are always going to be my main thing.  I talk about dogs a lot and apparently don't notice if people get bored (I'm working on remembering not to do this).  If you ask me a question about dogs in general or how my dogs are doing, expect a long and detailed answer. I love talking about them!  In-case anyone is interested, before my dogs arrived, my special interest was music and all thing piano and singing.  I would like to get back into piano again, but I seemed to lose my passion when I had my first bad bout of depression, and then we got Sunny during that and a new passion arrived :)

Stimming. I stim, that was picked up on in hospital.  Stimming is just some repetitive movements a person does to soothe or express emotion.  I'd rather not say how I stim because I don't want to draw attention to it and feel self conscious.  As a side note, if you know of a person on the spectrum, child or adult who stims, do not tell them not to do it unless they are physically hurting themselves, or someone else.  It's actually important for that person to regulate the sensory overload, and it's just the natural way they move.   It's not nice to be told the way you move is shameful, and suppressing stimming actually takes a lot of energy  and then the person is more likely to get overloaded. 

Having multiple diagnosis is not that uncommon I know this and yet I still feel bad about it and feel people will judge me.  When I was in hospital and we were bored - which was a lot of the time - the patients would often discuss diagnosis, and frequently people had 2 or more things going on at once.  It's also fairly common for it to take a while for psychiatrists to work out the correct diagnosis if there is more than one thing, as they all interact together and figuring it all out is not easy. I have 3 things, 2 formally diagnosed and one other thing so under control that I rarely need help, though I can bring it up with my CPN if I need too.  Having a great CPN is extremely helpful, my own really is an amazing woman with a enormous amount of empathy and understanding. I feel a lot of shame of the fact I have multiple issues,  often I feel like I am a burden both to the ones I love and to society in general.  I have been judged and had some very nasty comments about that in the past.  It makes me afraid to talk and be open.  Aspergers would have been there since childhood, but when I was a child it wasn't as well known, and so picked up on much less, especially in girls.  That isn't anyone's fault, but I am glad things are changing and the professionals are picking up on it, and getting support for Aspergers and other Autistic children.  I feel that if I had been understood at that age in school I might have got bullied less, or at least had more support with bullying.  As it stands, I remember telling a teacher about being bullied and her response was "if you just helped yourself by trying to fit in more you wouldn't have this".  The problem is I didn't know how to, I couldn't help not fitting in. The entire social structure that I faced as a teenage girl was something I didn't understand, and it hurt to be told it was my own fault that I was being bulled to the point I felt suicidal. 

The positive about the Aspergers being a formal diagnosis now is that I can actually access help.  So perhaps I can learn ways to manage some of the difficulties so it doesn't impact my life so negatively. Perhaps I will also learn to embrace the positives it brings. Maybe I can meet some people that think the way I do, because for a long time I have felt very alone, and odd, and just not fitting in anywhere.  I'm lucky that in recent years I have made some friends that like me, for me, and who I feel connected with for the first time ever. But it's still not easy.  There is a service my psychiatrist is talking about referring me too called Number 6.  It's a place that provides support to people with Aspergers, and High functioning Autism.  There are groups and hang out sessions, and support workers to help with things like benefits, housing, and finding and keeping employment.  I'm not going to knock back this help.  I'm going to see this diagnosis as a key to getting support to live a better life, and meet more people like me. I now have an understanding about why I am like this, and I realise now that most other people are not the same in regards to repetition and sensory issues, and it's therefore hard for them to understand where I am coming from when I get very upset over these things.  I also realise that I cannot continue to fake being like everyone else.  It's draining. I always fail, and it then results in people not getting to know the real me.  I need to learn how to interact as I am, in a way that typical people can relate too, without having to pretend to be typical.  Maybe telling people is the first step, or maybe its a huge mistake. I guess I'm about to find out!

Please don't misunderstand my intention in coming out about this.  I am not using this as an excuse.  I'm not going to just use it as a free past to say any offensive thing I fancy, but what I hope people will understand is that I cannot change this.  The way I am, is just the way I am, and telling me to try harder to be social and not say the wrong thing, is like telling a deaf person to just try and hear better the sounds around them.  What my hope is, is that the people who know me will understand that I think a bit differently to most people, and I have some extra challenges with communication, so if you aren't sure what I mean with something I've said ask me to clarify.  You will find that usually my intent is kind, even if my words came out wrong or I seemed blunt. I also want to clarify that people on the Autistic spectrum, including people with Aspergers, do feel things like love and empathy, and are not a robot without feelings or kindness.  Sometimes it's just hard for us to pick up on peoples emotions when they are being subtle about it, and so it can seem like I don't care. But actually it's more likely that I haven't picked up on the fact anything is wrong.  When I do know someone is suffering I will try and help, but like anyone else I help other people by thinking, 'what would I want in this situation?' But often what I want is very different from what others want or need.  What I'm hoping is that people can meet me half way if they understand the cause. 

I don't see this as a bad label that will hinder me.  Not knowing and understanding this hasn't helped me, so now it's time to try something different.  I will accept the help that's offered to help me get more social, be less isolated, and work on things like doing better in employment or voluntary work. I want to see this as an opportunity to understand myself, and how my mind works, and find ways to have a peaceful mind that work for me, so I can be a better person, a better friend, partner, daughter, and be able to engage with new people, and build new relationships.  I am hoping that rather than dwell on it as another horrible diagnosis, I want to see it as a step closer to finally understanding why I appear a bit odd at times, or rather why the entire world is odd compared to me.  Hopefully it will lead to a more positive future.