Friday, 22 January 2016

A hidden disability

I have Autism – hopefully that’s pretty obvious from the title of this blog. But actually that isn’t particularly helpful to a lot of people who may not understand what Autism is. A lot of people either think people who are Autistic are either really smart or intellectually impaired. Autism goes much deeper than intelligence, it affects everything from emotional processing, stimulus processing, social imagination and communication, and it even affects physical health.

Each single person with Autism is a single person with Autism. The condition is a spectrum condition, meaning each person will present with various intensities of the symptoms. The variation makes it difficult for me to speak about what other people’s experiences are of the condition, because  I am different to everyone else on the spectrum.

I want people to understand how Autism affects me on a day to day basis. I have developed very efficient coping strategies and mechanisms to negotiate socialising. A lot of the time the outside world is unaware of the difficulties I face because they are hidden, and a lot of people assume that I am not disabled because they can’t see my disability. So, here’s a list of some of my Autism-y behaviours, symptoms, mannerisms in everyday life;

       1. I spend 90% of my time completely confused and frustrated, this world obviously is full of human beings, and I find human beings confusing which in turn frustrates me. I have good strategies to cope with socialising and a good understanding of communication, but it doesn't come naturally to me. Socialising is more like a maths lesson to me compared to just an automatic function for most other people. 

        2.      I cannot remember people's faces or names very well. I think this is an autism thing, it causes me trouble when I meet people at meetings and conferences for example and I have to pretend I remember them to avoid offending them. It’s not that I don’t try or that I don’t respect people, but my brain just does not retain that kind of information. Strings of numbers or digits, like car number plates for example, and I can remember for years.

        3.      My imagination is great, but sometimes I find it difficult to remember if I did something in reality or if I just imagined that I did it. Which can cause trouble when trying to keep track of what I have done and what I need to do. I can genuinely become lost in my thoughts and imagination, I can sometimes spend hours sitting doing nothing but thinking. 

        4.      I repeat myself a lot, not quite sure why I do that, I just do. I also repeat things people have just said to me, back to them. I also sometimes need people to repeat things over and over to me before I can understand them.

        5.      I find it difficult to focus on voices, my brain seems to prioritise other noises and stimuli above human voices. It  means I have trouble focussing on what people are talking about, instead I think about observations I am making of the person and my surroundings. Then I have to pretend that I was listening, and try and reply with something that is relevant to what they were saying.

        6.      I can't deal with stress very well, because when I get stressed everything else becomes heightened and my brain can't cope with so much information.

        7.      I watch the same things over and over again on telly, which isn't really a problem for me, but apparently it's annoying for other people. I like driving the same roads over and over, even if it’s not the easiest way to get to my destination. I like to eat the same types of food over and over again as well. I enjoy repetition because its predictable and so I don’t get stressed or worried.

        8.      It really frustrates me when I have to make a decision, sometimes even simple decisions like what to eat for lunch can annoy me. I'm not sure why decisions upset me, I just get confused and my brain gets all messy.

        9.      I can be slower to understand or work out things compared to most people, that's just how my brain is. It's harder for me to ignore the background noise. People sometimes think that because I'm slower to respond or it takes me longer to complete tasks that I'm not very intelligent, which annoys me because I am intelligent, and my academic ability is something I pride myself on.

        10.     It's really annoys me when someone messes up my system, and I can get a bit snappy.

        11.     I am incredibly gullible, so if people are being sarcastic then I believe what they are saying and don't realise it's not necessarily true. Sometimes I don't understand jokes because I am a bit too literal.

        12.     I struggle with uncertainty, whether it's details about a journey I am taking or whether it's life plans and events. I like to know what's happening down to the fine details. That way I don't get too stressed out and confused.

        13.     I hate eye contact, it is very uncomfortable for me. When I make eye contact all I see is eyeballs, lots of people say they can see more than that when they make eye contact, I don't understand that. I force myself to make eye contact because I know that non autistic people think I'm not listening if I don't make eye contact.

        14.     I am introverted, I naturally just like being by myself. I enjoy my own company, and I find socialising and spending time with most other people hard work and exhausting. I can seem quite anti-social, but in fact I'm just selectively social. To be honest, if I'm out at social events the likelihood is that I would rather be at home alone with my pets, not because I don't like or respect the people I'm with, it’s just I can’t relax around most other people.

        15.      I hate speaking on the phone. I have trouble following conversations, so I have developed an understanding of body language which helps me follow conversation a bit better. But on the phone I can’t see the person who's speaking so I can’t follow the conversation very well, I don't know when it’s my turn to talk, I can’t tell when someone asked a question or just says a statement. It takes me a while to process and figure out what the other person said, and people talk really quickly on the phone, so I get really muddle up.

        16.     I end up locking myself in public toilets quite a lot, being autistic means that my brain doesn't filter information very well, so I'm hyper sensitive stimuli, especially light and sound, so sometimes I can become over stimulated which is when I am at risk of going into meltdown - a state which I don't want anyone to see me in, I have no control, and act on any urge. So, if I'm out and about and away from the house if I feel myself become overstimulated or panicky I usually have to find a public bathroom and lock myself in a cubicle, firstly because I feel better if I'm in a small enclosed space and if I do go over the edge then no one can see me crying and panicking.

        17.     I also quite like sitting in the dark, my brain calms down a bit, and I can think properly.

        18.     I think I'm more susceptible to trauma, for example even when small things happen which scare me or upset me, it hits me much harder, I get angrier or more upset than is proportional to what actually happened. I have just passed my driving test, and every time something negative happens it affects me more than it should, I keep feeling like I'm in the situation again, and the feelings I had in the negative experience keep coming back. It keeps me up at night, and all of the situations which caused me to feel lots of negative emotions replay over and over in my head, and each time I feel like I'm back in that situation.

        19.     I have a lot of GI problems, which is common for people with Autism. I am lactose intolerant, and I think I'm sensitive to gluten as well, I get a lot of stomach aches and nausea.

There is so much more to me than my Autism, however Autism is and always will be a big part of my life. It affects most things that I do, it affects how I feel emotions, it affects my physical health, it affects how I see people and the world around me, and it affects my relationships with people.

I don't fit into a stereotype because I am unique, just as everyone else on the spectrum, we aren't just factory made robots. We have things to offer, and interesting things to say. I also have those annoying personality traits like everyone else has. Don't dismiss  me because I'm different or because I have a disability, I can and will prove that those things don't slow me down, in fact I can be better because of them.

If you want to know a bit more about Autism, take a look at the National Autistic Society website, here’s the link;

Monday, 11 January 2016

Why I don’t believe in full recovery

Since 14 years old I have had doctors, psychiatrists, psychologists, therapists, nurses, Occupational therapists, dieticians, support workers, counsellors…..and various other professionals poking and prodding at the psychological mess in my head. I have tried more medications I than I can count on my hands, and I have taken more pills than I’d care to divulge. I have tried talking therapies upon talking therapies, some of which I know so well I could easily facilitate a course for someone in need (but I won’t).

Some people may find my recent decision to reduce the professional help I receive currently to just a phone call once a month a bit risky or odd. But the truth is I have never been able to develop strategies to help myself by myself. Falling ill during my teenage years resulted in me not only missing a heck of a lot of school, but I also missed out on the opportunity to discover how I would live my life, how I would be me, and even who I was/am. I was told how I was supposed to live my life, or I was told what was ‘healthy’. Which was fine during the time I was incapable of looking after myself.  

But now I am able to look after myself, at least at the basic level. What I find frustrating is that the generic advice given to me from almost all of the people I have met, is not actually moulded in a way I can live with. Don’t get me wrong, I needed professional help to keep me alive, and I will always be grateful for the tireless efforts of the professionals, and people who had to deal with me during a very dark time in my life. But I have encountered an illusion which I believed was real for a very long time.

Let me create a metaphorical example, I am assuming that all of you have seen circus workers/clowns/or pretty much anyone create balloon animals. Well let’s say that when I was ill I was just an empty balloon. Getting professional help and advice meant that I could fill my balloon with air. It’s better than it was before, because at least now it’s inflated, but it’s just a long thin balloon. In order  for it to become a balloon animal I have to twist, turn and mould the balloon until it’s an animal like shape. The only thing is, I don’t have detailed instructions, only very brief outlines.
Over the years I have been given some helpful advice on how to live my life in a healthy and happy way, but I need to take that advice and personalise it. I need to work out how that advice is going to fit into my life, and the way I live it. I need to work out which advice I have been given is going to work for me, and which advice is not going to help me.

When I discovered I was ill, I made the assumption that all I needed was a bit of therapy and possibly a bit of medication, and then I would be back to exactly who I was before I fell ill, or even a better version of who I was. I was na├»ve enough to believe that I would get better and be completely 100% healthy, and my life would be amazing and sparkly. I also thought that getting better was just a straight line on a graph upwards (anyone who’s been to therapy will understand the graph of recovery comment I just made).

After 10 weeks of therapy and several failed attempts of trying medication, you’d think I would have realised that this wasn't the case, or at least when a year had gone by and I ended up living on a psychiatric unit. But the truth is I didn't realise that I wasn't going to make some miraculous recovery for about 3 years.

When I had this realisation I could finally takes steps towards recovery. I understood for the first time that I was going to have to put myself out there, and pretty much expect to fail continuously until I worked out ways that I could cope with life. As an obsessive perfectionist it was not a comfortable realisation, but I knew that I was going to have to work hard, and that I was going to have to accept that I was not going to do well in every step and decision I had to make. Sometimes I was going to fall down or get sucked back into old ways, and I had to be OK with having a recovery graph that looks more like a squiggle on  page than a logical and tidy straight line upwards.

And this is why I don’t believe in full recovery. I can always be getting better, I can always be improving things for myself. Full recovery suggests to me that there is an end to this journey, and I don’t want that to be the case. I will always be Autistic, I might reach a point in which I am symptom free from my mental illnesses. But that won’t mean that I won’t still face challenges, in fact I know I will definitely face challenges because being Autistic sometimes in not easy.

I have gotten to the point now where I have addressed the fundamental problems I faced when I was ill, such as not eating, self-harming and self-destructive behaviour. I had the expertise of professionals to help me get to this point. But now I have to address the issues I face with life outside of my illnesses. Issues like how do I deal with Autism and maintaining professional and personal relationships, what is it that I really enjoy and how can I make it a career, what is it that helps me be happy and healthy, and most importantly what are the things which I cannot change and how can I come to accept them.

In order to work out answers to my questions, in order for me to live a long and happy life, I believe I need space now to explore. So that is why I have decided to reduce the professional help I receive down to a phone call once a month. I know when I need to ask for help, and I understand that my journey is far from easy, but for now I know this is the right decision for me.

If I have learned anything from the past few years is to never take the simple things for granted, like the love and support from family and friends, or the ability to smile and be happy.