Monday, 29 August 2016

So I did it!

Looking out over St. John's 
So I did it! I managed to not only survive, but to experience and enjoy travelling to it's full extent (low points included).

To many travelling around Canada for roughly 6 weeks might seem like no big deal, just an extended summer holiday. But for someone like me it is a momentus achievement. If you'd have asked me even a year ago of it was possible for me to do something like this I would have said no.

When I say 'someone like me' I am referring to someone who on a daily basis faces barriers, someone who consistenly has to fight to keep their head above water. Someone that finds the external world confusing and sometimes terrifying. Someone with Autism and Mental health problems.

In the weeks leading up to departure I could feel the Anxiety whipping up a storm. Already the idea of a lack of routine for 6 weeks was affecting me both mentally and physically. As we were making final plans a deep feeling of dread and uncertainty was rushing through me veins. Excitement and the need for adventure were also thrown into the emotional cocktail, leading to an overall confusing and overwhelming mixture.

Having made it to Gatwick and flown to Toronto airport I suddenly found myself with my head in a toilet bowl watching my stomach contents spill out of me like a fountain. I was told I wasn't allowed to fly to our final destination, Vancouver, and so myself  and my friend spent the night trying to sleep on the airport floor. It makes a good story, but at the time I was trying to figure out why I had fallen so ill, was it food poisoning? Had I eaten something I was allergic to? Was it a stomach bug?-it is only now, nearly a month later, that I'm realising it was probably Anxiety.

Staying in hostels was interesting to say the least. I am not someone who can handle close proximity to other people. People I know well, like family and friends, then it's fine - strangers are another matter. Having said that, I felt I dealt with the hostels in Vancouver, Jasper and Quebec city with some grace and patience. The hostel in Montreal may have been weak point. Being a light sleeper would be an understatement for me, so when we were in a dorm with a lady that snored louder than a horse with a cold I may have lost my temper. I removed myself from the situation before I blew my top, but staying in the hostel was no longer an option. Luckily, I had stored some emergency money away and I used it to book a hotel room for myself and my friend for the remainder of our time in Montreal.

There was sleepless nights (thank the pharmaceutical industry for Zopiclone!), lack of an eating routine, stress, anxiety, generally feeling unwell a lot of the time and a few times I just wanted to fly home. You may ask why I would put myself through all of that, or was it even worth it. And in truth, it was difficult, but my god it was worth it. All of the negative things I experienced were nothing to the places I saw, the beautiful scenery, the great stories and adventures, the interesting  people I met, the magnificent creatures I witnessed and the sheer achievement of knocking down those barriers and proving my doubts and Anxiety wrong.

I am so proud of myself, especially looking back on where I started. Almost exactly three years before we flew out I was discharged from the Psychiatric unit. In those three years I have achieved more than I ever thought possible, from creating the S4C and ITV programme with the team down in Cardiff, speaking at events of all shapes and sizes, becoming a trustee of an amazing charity, to learning how to look after myself and manage my mental health problems.

I am not prepared to allow the challenges I face to stop me from doing the things I want to do. I am willing to put the work and effort into overcoming the barriers which potentially could disable me. I also have the patience and endurance to survive the more difficult times. After being so unwell, having been incapable of looking after myself, having not been able to see how truly beautiful this world is  and having contemplated mortality from the darkest of corners, I am more aware than ever that I only get one life - I am not going to let those demons which once controlled me to ruin or take my life away from me. And I hope that I can prove to anyone who faces difficulties, whether it be Autism related, mental health problems, or even just day to day issues, that firstly with hard work, perseverance, bravery and some grit you can overcome any barrier you face. And secondly, things can and do get better.

It's onwards and upwards for myself, the next challenge is completing a year long college course. And of course, I will be doing a few campaigning bits and bobs in between, including speaking at a reception in the House of Lords in October 😄


Elk calf in Banff national park
Orca whales off the coast of Vancouver 



The view fro the top of Sulphur mountain in Banff national park

Looking out from the boulevard in old town Quebec city

Niagara falls




Toronto  

Friday, 20 May 2016

Counting sheep doesn't work....

Even the Dalai Lama once said "Sleep is the best meditation". On Maslow's Hierachy of Needs Sleep is at the bottom of the triangle, the most important layer for a persons well-being. I'm pretty sure that if there was such thing as a sleep God, all teenagers would dedicate their adolescence to worshipping this being. A good nights sleep can make us all better people, a bad nights sleep has the potential to turn us into grouchy,  resentful, unproductive zombies.

I think we can all agree that sleep is a powerful force, and one that we would most certainly die without. But what happens when sleep eludes us? 

I suppose I first started having problems with sleep from birth. Although I don't remember it myself, I do remember my parents recounting on several occasions that I spent the first 12-18 months of my life crying non-stop. And despite their desperate attempts to get me to sleep, they would still spend their nights and days walking up and down the hallway cradling me as I screamed and cried my tiny eyes out. My sleep problem became their sleep problem. And that is how it is for many parents of children with Autism and various other neurodevelopmental conditions. I cannot speak for carers, but I can speak for myself as someone with a neurodevelopmental condition. Both of us alike have felt the effects of sleep deprivation, carers, because they have the undying need and wish to protect, look after and support their child, and me, because my brain isn't quite the same as other people's. 

There could be thousands of reasons as to why sleep doesn't come so naturally to me. It may be, in part, genetics. It could be biochemical differences in my body. But I do know that most of the time I can't sleep because I can't stop thinking. My brain seems to have trouble switching itself off. 

I am a very visual thinker, I have a vast imagination and the majority of what happens in my life is actually inside my head. So I could be lying in bed, waiting for the warmth of sleep to arrive, but it never does because my brain is still going a million miles an hour. I could be sucked into a philosophical debate, or imagining how I would cope in an apocalypse. Or I might think of something which would be a really good written piece, or think of a really cool thing to paint, and then, of course, I have to get out of bed and write it/paint it before I forget.

Sometimes I can't sleep because of Anxiety. Anxiety is something that I have accepted as a part of my day to day life. Most of the time now I can get past it, however it does still have the ability to disable me from time to time, especially when it comes to sleep. I could spend hours lying in bed replaying an awkward social exchange which happened that day, or de constructing a social situation where I messed up. Or I could be anxious about a social exchange happening the following day and run through every scenario in my head to prepare myself for every situation which could arise. I could be practising dialogues, and conversation structures to make sure I am ready. I might not be able to sleep because there is something happening the following day which is triggering high levels of anxiety, and so I send hours on end worrying about it. 

Sleep deprivation can be a dangerous thing. For me, being sleep deprived exasperates the original cause of not being able to sleep, and so I get stuck in a downward spiral. Lack of sleep is a major trigger for a worsening of my mental health, and can lead to a full blown relapse. I can't function without a healthy amount of sleep. After years of struggling with sleep problems I have slowly built some strategies to help. 

The first and most important strategy to get a good nights sleep, for me, is Routine. I have a bedtime for myself, which I do resent slightly because I am not a child, but it's something which I have to commit to for my own health and well-being. The second trick I use is when I find myself unable to stop thinking, I write down what I am thinking about in a note pad next to my bed and tell myself that I can think about it in the morning. I do the same with Anxieties and worries (it's not fool proof and doesn't work all of the time, but it does work sometimes). The third strategy is Mindfulness, I simply do a 'full body scan'. A mindfulness exercise where you focus entirely on your body and how it feels, starting with your feet and working upwards to the top f your head. This helps to ground me, and bring me out of my head and into the room. I also make sure I don't have caffeine after 4:30, and if all else fails, if I haven't slept very well for 2 nights in a row, on the third day I take sleep medication to knock myself back into rhythm. 

Sleep disorders are common among people with neurodevelopmental conditions, like Autism. Suffering with sleep deprivation is an all too common problem for people with these conditions and their carers.  The Cerebra Centre for Neurodevelopmental Disorders at Birmingham University are conducting research into sleep disorders. Myself and my parents are raising money for the research by walking up Pen Y Fan, the highest peak in the Brecon Beacons, at night.  Please Donate by going to our Justgiving Page https://www.justgiving.com/Tracy-Elliott5?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Tracy-Elliott5&utm_campaign=pfp-share

Potentially, through research, sleep deprivation and sleep disorders may not need to be such a huge, and disruptive part of carer's and the people they care for's lives in the future.

Saturday, 2 April 2016

Being a woman with Autism....

I don't fit any stereotypes, I am not the non-verbal low functioning boy that rocks back and forth in the corner of the room. In fact the majority of people with Autism don't fit that stereotype. I wasn't 'naughty', I reached most of my developmental milestones and I can look at you in the eyes. I am not a genius or prodigy either, I am intelligent, I am academically able, I do have the ability to obsess over things until I am very knowledgeable or able in that particular field, but I am not the next Einstein or Mozart.

Autism is a spectrum condition in which someone can be anywhere along it. Each person will have a different combination of symptoms at differing levels of severity. Each person with Autism is different to the next person with Autism. You may ask why it is important for everyone to understand this fact? It is important because at the moment, despite the fact that many people in society have heard of Autism, people with Autism are affected by these stereotypes and misunderstandings which can be detrimental to  a persons well-being and abilities to function. For example, employers may not hire someone who is autistic because they have prejudged this person by their diagnosis.

Another thing that many people do not realise about Autism is that girls can have it as well as boys, not only that, but Autism affects girls differently to boys. I was 15 years old when I got my diagnosis, but it was at the age of 6 that I actually realised I was different. I noticed that my peers could see and interpret a world that I couldn't comprehend. I noticed that my world was brighter, louder, and over all more overwhelming compared to the world my peers lived in. At 6 years old I felt the intense vulnerability that came along with being different, I felt this uncomfortable feeling of being exposed. I wasn't one for sitting back and not doing anything about it, so I decided to learn to be 'normal'. Of course being Autistic meant that I didn't feel the need to involve any other people in my plan or how I was feeling, not even my family.

So over the years I went through the process of watching other people communicate, how they used their hands, facial expressions, the words they used etc, practising what I had observed, and then incorporating it in my bank of diagrams and flow charts in my head to navigate socialising. It wasn't until I fell ill and my psychiatrist noticed I was on the spectrum at the age of 15 that I was diagnosed.

Apparently, many women and girls with Autism take the same approach and from an early age 'mask' their difficulties. You may think 'what an ingenious way of overcoming the difficulties Autism can cause', which in some ways it is an incredibly effective way of coping. But it also means that many women don't get a diagnosis until they become severely affected other problems like mental illness.

I fell ill when I was 14 years old with Depression and Anxiety, and very quickly became so unwell I developed an Eating disorder and psychosis on top of that. I had to live in a psychiatric hospital for 4 months and I have been in mental health services for over 4 years now. The main reason for my illness was that the task of maintaining my 'mask', trying to appear 'normal' to the outside world was so exhausting and mentally draining that my brain couldn't function any longer.

Being a woman with Autism means that I am misunderstood frequently, it means that people don't understand the difficulties I face everyday because I appear 'normal' on the outside, it meant that lack of knowledge and understanding of Autism in girls prevented me from getting a diagnosis at an early age and getting the right support from an early age which could have prevented mental illness. Being a woman with Autism means that when things do go wrong and I struggle people can't comprehend why because to their knowledge I am 'normal' and am perfectly capable of functioning in the same way as them. Being a woman with Autism means that I am frequently told by people, both professionals and non professionals, that I couldn't possibly be Autistic because I'm 'not weird enough'.

The world to me feels a bit like being dumped in the middle of a vast lake and not knowing how to swim. The majority of my time is spent trying trying to keep my head above water, and avoiding the strong currents of mental illness. I find socialising terrifying, confusing and complicated. My life is spent trying to understand things that neurotypical people don't even batter an eyelid to.

I am not ashamed to be Autistic, and I am not ashamed to be a woman. If I set my mind to something you can be assured that not only will I get it done, but it will be done at the best quality I can possibly achieve, I have high standards, and I work hard. When I get interested in something I will get so knowledgeable and able in whatever it is that I could probably get mistaken for a professional. I am reliable, I am truthful, and I am organised. Being Autistic in a society built for neurotypical people is not easy and can cause lots of problems, but being Autistic in itself can prove to be a gift.  

If people simply understood that just because I appear to be 'normal' and able to cope doesn't actually mean that it is true. If people were aware that autism is different for girls compared to boys then maybe less girls will have to grow up feeling like a failure and a freak. If people knew that each person with Autism is an individual then maybe some of the harmful stereotypes could be vanquished.

Please show your support for Autism Awareness day (the 2nd of April) and learn one fact about Autism.
What is Autism?


Monday, 22 February 2016

Living with Eating Disorders

Eating Disorder Awareness week is upon us, and like many other mental illnesses eating disorders are cloaked by a thick mist of myths, misconceptions and stereotypes.

I developed disordered eating when I was 14, after falling ill with Depression and Anxiety. Unfortunately, I lost control  and went on to develop a full blown eating disorder, which quickly took over my life. It wasn't picked up by many people, and so it went untreated whilst I received treatment for Depression and Anxiety. I was admitted to a psychiatric unit when I started developing the early stages of Psychosis at the age of 16. It wasn't until I was discharged from hospital that my eating took a turn for the worst.

I became completely obsessed with calories, how many calories I ate, how many calories I burnt off, how many calories different foods contained, the net number of calories I had everyday... etc. I believed that eating anything would instantly make me fat, and I viewed calories like poison. At my worst I believed people were trying to sneak calories into my food, so I only ate food I made myself. I would make myself sick to expel calories from my body.

I over-exercised because I feared that the small amount of food I did eat would cause me to pack on pounds of fat. I probably spent more time in the school gym than in lessons during that time. I would wait until my family were asleep and then exercise until early hours of the morning.

During that time I also discovered Diet pills. To begin with I bought a packet of one variety, but after a while I bought more, and I bought other types. At any one time I was taking on average about 5 different types of diet pills. Most of which where un-supervised and didn't come under any regulatory boards. But that didn't matter to me, because all I cared about was the words 'weight loss' written in large writing across the packets. I later found out that the pills were mostly caffeine, I calculated that I was consuming an estimated 9 grams of pure caffeine, the equivalent of 45 cups of strong coffee a day.

Obviously I couldn't maintain those behaviours, my body couldn't cope with lack of food, exhaustion, and ridiculous quantities of caffeine. My hair was falling out, my nails cracked and turned yellow, I had symptoms of caffeine overdose, like  dizziness, chest pains, fast/irregular heart beat, uncontrollable muscle movements, hallucinations, and confusion. I was constantly freezing cold, my hands and feet were blue, I was constantly dizzy and tired. I collapsed on my bathroom floor one day.

When I woke I realised that I was slowly killing myself, I had lost control and if I didn't start fighting I would end up in hospital with a tube up my nose feeding me 3000 calories in liquid form. I have been in recovery from that moment onwards.

I did not choose to have an eating disorder, I did not choose to fear food and fat. Eating disorders are illnesses not choices, and the science backs that up.

Eating disorders are not fad diets that people participate in when they feel a little self concious, they are serious, life threatening illnesses.

Neither are eating disorders a fashion trend for western women, eating disorders don't discriminate and are not pretty, or fashionable. In fact, I looked absolutely awful during the time I suffered, I genuinely looked like a zombie.

Men get Eating Disorders too, in fact, eating disorder charity Beat estimates that 15-20% of people with eating disorders are men.

Eating Disorders are not just about having a low body weight. A low body weight is just a side effect of one type of eating disorder. A lot of people with eating disorders have what's considered a healthy body weight, some have a body weight above what's considered healthy, but still suffer a considerable amount with this terrible type of mental illness.

Recovery is not simply about eating more. Recovery is about tackling the underlying beliefs and disordered thinking behind the behaviours, recovery is about fighting everyday against something with so much power that it has kept you a prisoner for however long. Recovery is a journey, and in my opinion, does not necessarily mean getting rid of those thoughts and feelings, it's about learning to take control and not letting the thoughts and feelings ruin your life.

I did not choose to fall ill with Anorexia Nervosa, but I did choose to recover. I worked hard and I kept tacking steps forward, no matter how small. I had relapses and I felt like giving up most of the time, but I kept going. Over time I gained the control, over time I grew stronger.

I am now able to enjoy the foods I love, I am able to enjoy family meals, I am physically healthy and I can participate in the things I love doing like Campaigning, writing and outdoor activities. I do still get the thoughts, and when difficult things happen those feelings creep back, but I have the skills to stop my eating disorder in it's tracks, I have the control and I have no intention on giving it back to my eating disorder.


For more information on eating disorders check out Beat's website;
https://www.b-eat.co.uk/about-eating-disorders

Friday, 5 February 2016

It's Time to Talk about Stigma


As a result of Time to Talk day (Thursday 4th of February 2016) I have
been thinking about Stigma. For those of us who have mental illness,
we face Stigma often, in fact I would say that people facing mental
illness face Stigma and discrimination almost everyday, but maybe we 
don't realise it. 


I officially fell ill when I was about 14 and a half, that was when people found out and I started getting help. But in truth I probably
fell ill at least 6 months before that. Why didn't I ask for help when
I first started to feel unwell? Why didn't anyone notice until I was
already trapped in the darkness that is mental illness?
The answer; I was terrified, not just because it felt like I was
living in a nightmare, but also because I knew that the world would
see me through the eyes of misunderstanding, misconception and, of
course, Stigma. I knew that it was very likely I would be seen in a
different light, instead of being the quiet, high achieving student, I
would become the 'psycho' or 'freak' engulfed in madness, or  I would
be seen as an attention seeking, moody teenager.

Being Autistic also meant that I had spent years of my life learning to sink into the background to avoid being 'outed' as being different.
I didn't want to be put in a spot light, it was one of my worst fears. Which is what I thought would happen if I told anyone about my struggles.

The first 6 months I suffered alone. I suffered alone because the sheer enormity of fear I had of people finding out I was suffering with mental
health problems. And that is why Stigma is so dangerous. Lots of
people don't speak or seek help because of the fear of facing peoples
judgements. Particularly men and boys - being 'macho' means showing no 
weakness, and I suppose feeling emotionally unwell is seen as being weak. Actually things happen, that's life, we fall ill, we get treatment, we work hard and we recover. That is as simple as it should be, but when Stigma come and stands as a road block, everything becomes harder and more complicated.  


I was never aware of the Stigma until it was me under it's beady eyes. I never consciously took any particular opinions on mental illness
before falling ill, yet I still had these strong views on how I would
be treated by society when I developed mental illness myself. I was only 14 and I already had absorbed this dangerous mind set. Subconsciously I had taken in the stereotypes, the name calling, and the myths. 


For me over half of the Stigma I have faced is Self-Stigma. What I mean by 'Self-Stigma' is that I took the opinions and myths and
inflicted them upon myself. I called myself a psycho, I called myself
a freak for having mental health problems.I called myself a failure for falling ill. I was already in a position in which I was vulnerable and was subjected to derogatory thoughts due to my illness. But Stigma had brainwashed me into judging myself further.


Luckily, once I told people most were the opposite of judgemental, they supported me and tried to understand. But of course Stigma showed
its ugly face from time to time. Comments like "you are a pretty,
intelligent girl with a good family, what have you got to be depressed
about?" Or "you need to smile more often". Comments that many may not
batter an eyelid to, but for someone suffering with mental illness and
low self esteem those comments can be incredibly destructive.

I had an illness, I fell ill. If I had Diabetes no one would have battered an eyelid, no one would have told me to "snap out
of it". If I had scars or marks from injecting insulin no one would
have pointed them out and told me I had a "disgusting attention
seeking habit". If I had diabetes I would be watching what I eat, and
not eating certain things, no one would call me out and say "can't you
just eat, stop trying to look for attention". I don't mean to generalise, all illnesses are difficult to deal with. But by simply putting the word 'mental' adjacent to 'illness' suddenly that person becomes someone to be scared of or someone to disapprove of. 

Guess what, I have depression, anxiety, anorexia, self harm scars, and hallucinations. I'm not ashamed, and stigmatising comments don't affect
me any more. I fell ill, it was not my decision. I did not choose to
fall ill, but I did choose to recover, that is what is important. I am
probably going to have my diagnoses for the rest of my life but I am
learning to manage them, and that's all that matters to me. I know exactly how much effort and energy I put into getting better, I know the struggle and pain I went through, and I consider myself a strong person for surviving and not giving up.

Stigma can kill, Stigma causes unnecessary suffering, and Stigma can prevent recovery. Myths are myths, don't believe them. Educate yourself and
your family and friends. Look after yourself, and look after your
peers. You never know who will be affected by mental  illness, it
doesn't discriminate. We are not monsters, or attention seekers, or
freaks, we are people, and we deserve to be treated the same as anyone
else.

Time to Change are a national organisation focussing on raising awareness of mental health and tackling stigma. Take a look at their website for more info on mental health, and the effects of stigma:
http://www.time-to-change.org.uk/mental-health-stigma

Mind are also a national organisation, they have some very good info on specific conditions and disorders;
http://www.mind.org.uk/

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 naïve 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.