Posts Tagged ‘feelings’


Alexithymia. A new word for me. A new word to get my tongue round and to understand in different ways. Alexithymia is the name for a condition that means people affected by it are dysfunctional regarding emotional awareness, social attachment and interpersonal relating. It is a condition that co-occurs with autism but does not share the same symptoms. Researchers are constantly debating which symptoms are related to autism and which are related to alexithymia. More can be read about autism and alexithymia and how they co-exist with each other by following the link: https://sites.google.com/site/geoffbirdlab/home.

In layman’s terms you have no words for anything, no emotions, nothing to say and nothing to talk about. It can be as if you are a shell just existing and literally going through the motions until you die. You have no life and spend most of your time alone wondering why you are the way you are and why people shun you. It drains you constantly wondering why people avoid you, don’t talk to you, cross the road to avoid you. You have no energy left to deal with day to day life. All you do is exist for reasons unknown to you and to anyone around you. You have no purpose in life, no reason to exist. All you can do is wonder why…

Dr Rachel Moseley from the University of Bournemouth describes alexithymia as: difficulty identifying what you’re feeling, difficulty describing what you’re feeling, and an externally-orientated, ‘stimulus-driven’ thinking style (which means that people with alexithymia don’t tend to be introspective about their feelings and emotions or spend a lot of time thinking about how others might be feeling – because emotions are very confusing to them. They therefore tend to think more ‘concretely’ about things that are going on (i.e. EXTERNAL stimuli in the outside world rather than INTERNAL feelings). And adds that this is the most common view but not the only view. This is a view I can relate to from my own personal experiences.

In my personal experiences I have been shunned by people at work and in social situations. In relationships I just sit there at the most wondering what to say or do, usually just staring blankly at a wall ignoring the person I’m with. It’s no wonder I’m single. How am I supposed to respond to questions of how I feel when I cannot interpret any feelings I have? And what happens when you don’t feel anything? How do you answer someone who asks you how you’re feeling when you’re feeling nothing at all?

Conversation does not come easy to me. I struggle to keep up with what is being talked about and quickly lose interest preferring to do anything but converse. If someone has a baby it’s so what, people buy a new car and I’m wondering why they are so excited, they got a new job or a promotion and I’m wondering if they will be so excited in a year’s time. I’m not interested right now.
Even if people are ill, injured or dying there’s barely a flicker of an emotion. Life goes on and these things happen. At funerals there’s no tears. I go because I know it’s expected, a social norm and because I know it means something to my friends. This could be seen as pragmatism and stoicism at an extreme most people cannot comprehend.

And yes I’ve felt lonely, isolated, anxious, stressed, depressed and suicidal all because I did not understand why some people wouldn’t talk to me, why some people shunned me, why I found social situations difficult, why I didn’t behave and express myself the same way other people did naturally, why no-one wanted a relationship with me, why I felt different and not in step with the rest of society. This is when you’re at your lowest, everything is too much to cope with and ending it all seems the only way out.

Yet I’m still here. The suicide attempts failed and after years of trying to find a purpose in life I did, study and research. I started an access course at college and now I have just started a PhD the highest qualification you can get. I have found something I enjoy doing and something I feel that I am good at and is worthwhile.

I was diagnosed with Asperger’s Syndrome at the age of 41 in October 2008. This answered many questions, filled in gaps and helped me to move on and understand myself and others better. There still seemed to be something missing but I assumed it was my Asperger’s being unique to me and got on with life still wondering about some things and still making some mistakes the same.
Then in March this year I was diagnosed with dyspraxia and this helped move things on a little bit. A lot of it crosses over with Asperger’s but there was still something missing, one more gap to fill. Then the lead researcher on a study I had taken part in Dr Rachel Mosely emailed me the results of some research I had taken part in about autistics and self-harm and here was a new word alexithymia.

I read about it and I recognised myself in the description. All of a sudden it made sense why I was the way I perceive myself to be. Why I find social situations difficult, why I feel emotionally detached and why I find it difficult relating interpersonally. The final gap in my personal identity had been filled and I had a name, a label to attach to my feelings and identity. I could call them something, read about them and understand them. It’s how my mind works.

I felt that all the anxiety, stress and pressure had been lifted from my shoulders. No longer did I need to try to fit in and try and be someone else because I could not and cannot be that person. I can only be me. I don’t need to try anymore I can relax and let the things I cannot control go and concentrate on the things I can do.

I understand now why I struggle in relationships and social situations and why I don’t feel emotions the same way others do and I’m fine with that. I get why my supervisor at university says they want to see some enthusiasm from me and then stare at me wondering why I’m just sat there staring back at them blankly. I now understand so much more about myself, people and life and all because of one word.

On a daily basis this means I struggle to understand why some people seem to get on with others and make progress effortlessly , talking to others, making friends, making contacts whereas I struggle to do these natural, normal interactions and are quite often left at the edges of discussions and meetings looking on, wondering what I need to do to get my voice heard and feel involved in society. This includes my autistic friends too. Many of them have social skills that I am envious of and I can only stand and wonder at their ability to start and hold a conversation with others.

One skill I do have is that I can write. I can write about how I feel and what I see going on in society far more effectively than I can talk about it. I don’t know why this is, it’s just the way I am and I’ve long got past the point where I would lay awake all night worrying about it. I can read theories, apply them to autism and write about them. Once I’ve written about them I can talk about them all day long, until the topic changes and then I’m lost.

I am lucky too in that I have a good and varied circle of friends and I look at them differently now. I see them in a new light and realise how lucky I am to have them in my life. I am also very lucky in that I am studying for a PhD and if I’m having an off day I can stay at home and do nothing or go for a run over the moors and get back to being myself.

I understand and appreciate that not everyone would feel the same way I do. I know people who don’t like labels and are always trying to fit into society in as unobtrusive a way as possible and all they want to do is to feel accepted and that they belong. And I have been there too fighting a constant battle to be accepted and understood but it was a battle that drained me of everything and nearly destroyed me.

Now I’m just myself and if people like me they do, if they don’t they don’t. I understand myself now and understand why some people like me and some don’t. I feel so much better now and I’m sure people are noticing because more people are saying hello to me and smiling at me. It’s amazing how one word can change everything in your world.


It’s the night before another fell race and I’m sat here feeling sick and nervous at the thought of tomorrow’s race, the Mythholmroud fell race. Why though? It doesn’t make any sense. I’ve run this race before and know the area fairly well. I’ve run races before including plenty of fell and trail races so I know what to expect, tough climbs, mud, cold water, more mud and cold water and a horrible descent before I can get back to the warmth of Mytholmroyd community centre. So I know where I’m going and what to expect. So why do I feel sick and nervous? I’m not fit at all. Overweight, slow, carrying the usual niggles that every runner seems to carry so no chance of winning or even coming in the top thirty. Even if I was fit I still wouldn’t have a chance so that’s another reason out of the window but it doesn’t explain why I feel sick and nervous. In the end all I can do is assume that it’s just a natural thing to feel nervous before a race, part of the process of preparing yourself mentally to run and do your best on the day. There doesn’t have to be a reason, it’s just one of those things that you can’t control. So yes it’s another sleepless night of worrying unnecessarily over something I can control and I know what I have to do but I still worry and I always will.


This is an article I have written about my experiences with Mental Health Services and Learning Disabilities in England. The article is going to be used to help healthcare professionals in their training for people on the autistic spectrum. All comments are welcome.

The Autistic Impressionist

Andrew Smith

Sunday, 20 September 2015

I was at a meeting recently with some healthcare professionals from various backgrounds, but all with an interest in autism. The meeting is held every three months at Halifax, West Yorkshire. It is always interesting to hear the views and opinions of the professionals that attend with regards to developments in local and central government policy that affect both the professionals and people on the autistic spectrum.

One of the topics that came up was the diagnosis of autism and Asperger’s Syndrome and which local services a person with high functioning autism or Asperger’s Syndrome comes under. For myself and many others this was a choice between Learning Disabilities (LD) or Mental Health (MH). This is a topic that is often discussed because it affects nearly everybody who is involved with is on the autistic spectrum.

I recounted the story of when I was visited in my home by LD and MH services as they tried to determine which service I fell under and who would pay for any services I may require. This was of course far more important than anything else that may or may not decide I needed. What seemed to surprise some of the professionals at the meeting was the extraordinary lengths I went to, to ensure my house and myself were clean and well presented. What they didn’t and couldn’t know was how this also took over my life in the lead up to the meeting.

The advice I had been given by some support workers at a local autism charity was to present myself and my home environment in as natural and normal a way as possible for the meeting. This was to ensure that the professionals visiting me got an honest impression of how I lived and coped. This is to ensure that I or anybody else in the same position gets the right amount of support based on their circumstances and not based on false impressions.

However having Asperger’s Syndrome and quite possibly a touch of OCD as well this was something I just could not do. I had to tidy my house and prepare it as if it was a royal visit! And this was my problem. Despite knowing that this would go against all the advice I had been given and create the wrong impression, I still could not bring myself to leave my house as it was. The feeling to tidy up was intensely overwhelming and all consuming.

In the weeks and days leading up to the meeting getting and keeping my house tidy was all that occupied my every waking moment. There was nothing else on my mind, nor anything else I wanted to do. I had always been brought up to believe that you could live in whatever squalor you chose to do, but if you had people coming to visit you your house had to be a palace. And being on the autistic spectrum I took this literally and to extremes.

This was what, on reflection made my behaviour different to that of a neurotypical person. A neurotypical person would know when to stop and would not let the situation take over their lives in the way I did or at the very least have far more control over the situation than I did. In addition they would I believe take the advice of the charity and leave their home as it was.

But I am not neurotypical and I didn’t know when to stop cleaning. In the weeks leading up to the meeting I kept thinking that although things were clean they would get dirty again. But then I thought that unless I cleaned them they would be dirty on the day of the visit wouldn’t they? This cycle of thinking, cleaning and reflecting dominated my life over this period of time.

All these thoughts were going round and round my mind 24/7 in the days and weeks leading up to the meeting and they took over my life and overwhelmed my daily existence. However looking back I believe I needn’t have worried as much as I did. Nobody seemed that bothered by how clean or unclean my house was.

All they were bothered about was me and I hadn’t prepared myself for that either mentally or appearance wise. Again I got the impression that this didn’t really matter too much at the end of the day to anybody there. In the end Mental Health was selected as the service that would have responsibility for me and I had more in-depth meetings with people afterwards.

What I hope this story illustrates is how the desire to put on a false impression for people can takeover and overwhelm a person’s life to such an extent that is their life and the sole reason for existence. They may give the impression of being tidy, clean and in control but in reality they are untidy, dirty and have no control.

But the desire to create the right impression is all that matters to them and they will go to any lengths and endure all forms of mental and physical torture to do so.

What this also illustrates is the constant fear many people on the spectrum live in of being judged by others. This has an effect on an individual’s personality and impacts on their identity as a human being living in a social world they have tremendous difficulty understanding. As a result some people and especially people on the spectrum will do even more to be accepted and judged in a positive way even if this is detrimental to their actual situation and health.

I will add that this is my own personal experience and others on the spectrum may react to the same situation very differently and exhibit very different behavioural traits.

© Andrew Smith 2015


I had a really good run today. Not fast nor a long distance but good just for the sake of running and getting out into the countryside away from civilisation and this world we live in that seemingly never stops and just goes on and on constantly. And this got me thinking about why I run. The inspiration for this line of thought came from a blog I read from Helen Mort who also wrote about why she runs.

There are many, many reasons why different people run and all of them are valid. Some people run to lose weight and get fit, others to race and be seen as a winner and for some it will be the chance to show they are the fastest in a race, over a distance or if they are on Strava over a particular segment.

But for me and I hope for many others it is the sure pleasure running gives you in getting away from the seemingly endless and constant barrage of images, noises, words and much more that bombard so many people every hour of every day. Running for me provides a means of escapism from a world in which the avenues of escape seem to be reducing all the time.

For myself too living with the condition Asperger’s Syndrome a form of autism, running gives me a chance to clear my mind of all the thoughts and ideas that conspire to overwhelm my mind all the time in addition to everything else the world throws at me. Running enables me to start afresh with a clear mind free from clutter.

Today was a very good example of this. I am lucky to live where I do on the doorstep so to speak of the countryside. The opportunities for me to go on a run and get away from it all are endless. The only limit is my imagination for thinking up routes and my body which is getting on a bit now!

So today I set off with a route in mind and for once followed it. along the main road then left down a long road, one half houses the other half fields. At the bottom of this road I turned right down a short road and then right again past a farmhouse and onto some nice single track trail heading down into the woods.

And it’s going down into the woods that my mind begins to clear, thoughts disappear as I concentrate on where I’m going looking out for loose stones, tree stumps and wet mud picking the best path down the trail, running as natural as can be, running for pleasure and no other reason.

For me it’s a very uplifting feeling running along paths made by nature under a canopy of green leaves and brown branches through which a strong sun tries to shine rays of light. This is where I feel at one with the world and with myself. No computers, no television, no radio and certainly no mobile phone. Nothing to distract me from the pleasure of running.

My mind is clear and free not overwhelmed by thoughts of what I should and should not be doing, who I should talk to and who I should not, who I should have in life and who I should not and so much more that occupies my mind in this every increasingly complex world I sometimes struggle with.

The Japanese have a phrase for this Shinrin-yoku which translates as forest bathing. This is the practice of wandering the trails of the forest, taking in the natural beauty and feeling at one with nature. This has a calming and relaxing effect on your whole wellbeing and this is why I run and why I ran today through the woods. To find peace with the world and myself until the next time I am overwhelmed and go for another calming and relaxing run through the woods.


This came from my writing workshop last night

I carry my wallet, new, still smelling of fresh leather

Inside it carries my money, crumpled and torn, pulling faces at each other

Cards, lots of cards, nearly enough for a pack

I carry coins, £1’s and 50p’s

Some are shiny and new, others dull with age

Some are heavy and strong, others strangely light and dainty…

I carry three stones, all blue speckled with gold

Two look like a mathematical triangle, ready for their angles to be calculated

The other is dull and square and sits there

Watching, listening, smelling, taking it all in…

I carry a vest on my back, unwashed for weeks

Smelling of me in various stages of life

It fits perfectly, moulded to the shape of my sweaty body

I carry images in my mind, from places I’ve been too, people I’ve seen

Ready to be recollected to test how accurate my memory is…

Smells carry up my nose and enter my mind

So that I close my eyes and imagine I’m somewhere, anywhere but here

The sound of birds vibrates in my ear

A sound I have carried from childhood and will carry till the day I die…

I kneel and touch the ground, it is cold and hard

Like someone I knew a long time ago…

But I don’t carry you anymore like I use to

A stone weight around my neck, dragging me to the floor

Nor do I carry the rain that pours from my eyes

Drowning out my memories of you…forever!

I don’t carry a penknife, my heart was hollowed out years ago…

My mind, still sharp from the memories…

I don’t carry pictures of anyone, all my pictures are stored deep in mymind

Nor do I have a map, I’ve walked these moors many times before

And they know me well now and show me the way home

I don’t carry a book with words and pictures in of places I’ll never see…

I don’t carry a watch, I watch time past by as it soars down the moors from on high

Flowing into the swiftly moving stream, getting its breath back

Before it starts again, taking me on its currents

To wherever it desires…


If I could speak to you like the

Heather speaks to my bare feet as

I run to reach you, be near you

Avoiding stones the way you avoid me

 

If I could connect with you like an

Eagle connects with the currents of air

High above the cold mountain

Where your emotions lay breathing

 

If I could leap into your arms like a

Salmon returning home to the

Place it was born to die

As I die every day without you

 

If I could see you just one more time

Before I became extinct in your eyes

Flesh dripping into the earth, bones

Crumbling to dust, feeding the worms

 

The answers to my questions would be

Fulfilled the wise old owl told me

And I would know where I stand

Instead of feeling lost in your web of silk


My journey to a diagnosis of Asperger’s Syndrome begins sometime in 2007. I had always felt there was something different about me and I also felt that I was missing out on something in life but I could not put my finger on it. People would say I was weird, strange and displayed inappropriate behaviour at times but nothing concrete I could actually tie down and say this is me and why I am the way I am. I had looked at various mental health conditions and whilst I felt I displayed some of the traits it did not cover the whole spectrum of emotions and behaviour I felt I had.

It was a friend of mine who suggested I might have Asperger’s Syndrome. She had read the book ‘The Curious Incident of the Dog in the Night’ and felt that I displayed many of the characteristics that the main character showed. I researched Asperger’s Syndrome on the internet and immediately felt that this was me, this was who I am and these were the answers I had been looking for all my life. I booked an appointment with my doctor mistakenly thinking he would show compassion and understanding and organise an appointment for me to see a suitably qualified psychologist. How wrong I was!

My first appointment with my doctor consisted entirely of me explaining to him what Asperger’s Syndrome was and why I felt I had the condition. I will not use the term ‘suffer’ as I feel that this gives the wrong impression. People with Asperger’s Syndrome do not suffer from it. They suffer from the ignorance of others who believe mistakenly they have little or no value to society. Unfortunately this view is shared by some members of the medical profession and immediately creates the first obstacle a patient needs to overcome, that is, the very person you go to for help and guidance sees you as a burden on the medical system rather than someone who needs compassion and understanding.

My doctor flatly refused to believe I had Asperger’s Syndrome and made it clear that he didn’t believe me and thought I was making the condition fit me rather than me fitting the condition. Reluctantly he agreed for me to see a psychologist for depression and a request for an appointment was sent off. What was most distressing for me about the behaviour of my doctor towards me was his outright refusal to believe anything I said about myself! He showed a complete disregard for me and my feelings and instead wanted to impose his own beliefs about my personality and behaviour on me.

 

This left me feeling extremely confused. Was I right in believing what I was feeling about myself or was I imagining everything! Because of this I decided to write down how I felt and why I felt that way and leave it to the psychologist to decide. Consequently on the day of my appointment I was prepared mentally and went in feeling confident which is crucial in a situation such as this. On many occasions it is very easy to forget important details about something, such as a medical condition, and very often these details can make all the difference. As a consequence I was able to leave the psychologist I saw with a valuable document for him to read in-depth at his leisure and make a considered opinion based on this rather than based on memory and a brief discussion.

After a number of weeks I received a letter from the psychologist stating that he felt I had Asperger’s Syndrome and that it would be beneficial for me to attend an assessment for Asperger’s Syndrome at Sheffield Asperger’s Service Centre. I made an appointment to see my doctor to organise an appointment again assuming it would be a straightforward appointment and the relevant paperwork would be sent off to Sheffield and I would wait for a date for my assessment. Again I was wrong. All my doctor was concerned about was the cost of the assessment and who was going to pay for it. There was no compassion shown whatsoever for my mental state or for my emotions and feelings. The rest of my life would come down to cost and a faceless committee who would decide if I was worth the price of the assessment and if my life would be suitably enhanced enough to justify the cost.

This shows up another flaw in the medical system. Whilst one person may make a recommendation based on their professional opinion it may come down to another, disconnected medical professional to decide if the person gets the treatment they need. This can lead to confusion and delays and merely add to the persons problems rather than help them. Luckily for me the situation was taken out of my doctors hands as the psychologist I had seen had referred my case to his boss a consultant psychologist unbeknown to me and he had the authority to authorise the assessment without the need for it to go before a committee. Again this shows a severe lack of communication and a lack of knowledge of procedures between medical professionals. This is something that needs addressing as it can cause friction and confusion between medical professionals and patients when so many mixed messages are being sent and received.

My assessment for Asperger’s Syndrome went smoothly and it was confirmed that I did indeed have Asperger’s Syndrome and I had the diagnosis I so desperately needed. My only issue after diagnosis was again on the subject of cost when I told my doctor that I was receiving six sessions of counselling and his face dropped at this news. It was only when I told him that it was already included in with the cost of the assessment that his face began to regain some colour!

 

This is obviously a very serious subject and in summary it has to be said that a doctor in practice needs to believe the patient whatever his or her own personal feelings towards them and support them in their journey to diagnosis, not belittle and confuse them which only adds to the considerable stress and anxiety that the patient is already going through. Without this initial support the patient runs the risk of any other conditions they may have such as depression and anxiety becoming much worse and developing into self-harm or suicide because the patient feels that no-one believes them and there is support available for them.

Doctors and other medical professionals also need to communicate situations better and inform each other of the procedures that are available for a pathway to diagnosis in order that the patient isn’t lost and confused by the whole situation. I also believe that doctors and other healthcare professionals need not just more training but better training too. This training needs to replicate the full spectrum of the autistic condition and the differences between children, adolescences and adults. By doing this the whole medical profession will be in a far better position to offer care that is focused on a particular person and the blanket coverage that can occur today. By doing this and looking beyond the short term savings, long term health and wellbeing can be better monitored and maintained and in the long run savings will be made across the board because autistic individual’s health and wellbeing will be at the centre of the plan and over time it is quite possible that less will need to be done to maintain this level of health and wellbeing at the initial level of intervention.

The most important issue though is to remember that patients are human beings with real emotions, feelings and beliefs and if they are reduced to a cost then they are also being reduced to the same status as a broken down car that can be left in a scrapyard to slowly rot and not as a valuable member of society which they all are.