Posts Tagged ‘autism’


my eyes do not see you as you see me
they do not see the emotion and fire behind your gaze
nor the hopes and heartache you have endured
your fears for the future
the anguish of your past
are all lost to me
i only see your eyes as
two round objects in a
face full of features
a nose, ears, teeth
they are all the same to me
i try to read the stories behind them
and what stories they must hold
but i cannot know them
to know them i need to read your eyes
and that i cannot do
all i can do is sit here and dream
dream about the sights
your eyes have seen
the places they have been
the memories they hold
i wonder if you can read my eyes
tell me the stories they hold
read me in ways i cannot read you
open the pages that are in my eyes
see the sights and visions i have seen
just by looking at my eyes
if you can then you are so lucky
and truly gifted
at least in my eyes


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.


he watches the children
silently, patiently, intently
observes their behaviours and interactions
pays attention to their communication and play

making notes about his experiences
these kids differ from others
in subtle but important ways
thoughts churn in his mind
he knows he is onto something new

in a world of their own
alone and aloof
detached from the world
still a part of society


i see life in black and white

there is no grey for me

where the black and white lies

can change day to day

black becomes white

white becomes black

depending on my interactions with others

different situations, new experiences

to an outsider if can appear

to be shades of grey

but inside, for me

it is black and white


they never see you when you’re alone
with the tv and four walls for company
the walls that talk back to you if you listen long enough
the tv that’s stuck in an endless time warp of bygone shows
repeated, repeated, repeated
these are your friends for today
the only ones who will see you
they’re here for you when you’re alone
watching the sky turn from white to grey to black
bottled up feelings of hopelessness and worthlessness
bounce off the walls going deeper inside you every time
words form slowly one at a time as they
take off into the universe in search of someone
to share ideas and thoughts with
tears form as slow as ice cracks
drying on your skin before they can flow down your cheek
you don’t even notice them
as the day drags on longing to be over
you turn to the bottle your one true friend
and share some hours together
blocking out the numbing reality of life
till you wake up in a daze tomorrow


One of the biggest problems I face in my daily life living with Asperger’s is not only understanding the facial expressions and non-verbal communications of others but understanding how my own facial and non-verbal expressions ae interpreted and understood by others. I spend a lot of time wondering and worrying if I come across to others the way I intend or if I’m misunderstood, misinterpreted and come across in a completely different way. This last one could be a possibility as I have been surprised and confused by the reactions of others when I have looked at them and they have responded completely differently to how I expected.


I believe you
When I stare in your face
And see a happy smile
Beaming back at me

I believe you
When you tell me you’re
Happy to see me
And kiss me gently

I believe you
When you hug me tightly
Squeezing me warmly
Feeling your skin on mine

I believe you
I believe every word you say to me
Every touch of your person
I take it literally

I believe you
Because I know no other way
And whether you truly mean it or not
I still believe you

 


My eyes do not see you, as you see me
I do not see the emotion and fire behind your gaze
nor the hopes and heartache that your eyes must conceal.
The fears for the future, the anguish of the past, are all lost to me.
I only see your eyes as they are,
two deep blue pools set
in a face full of familiar features,
a nose sloping down mountain like
ears leading to deep tunnels,
teeth like prehistoric monuments,
They are all the same to me.
And when I try to read the stories
that live behind those eyes,
the life they must hold,
how I wish I could read them
like I read the words in my books.
But I cannot know them.
For to know them I must be able to read them,
and that I cannot do.
So all I can do is to sit here and imagine,
imagine what sights those eyes have seen,
the places they have been,
the memories they hold.
But as I do that I wonder,
I wonder if you can read my eyes
and tell me the stories they hold?
Can you read me in ways I cannot read you?
Can you open the pages that my eyes hold behind them?
Can you see the fields, the mountains, the lakes,
the skies that I have seen just by looking at my eyes?
If you can then you are indeed a lucky man
and you are truly gifted.
At least in my eyes.


watching people crossing
the bridge of life
going back and forth
so easily, so freely
and i stand here looking
for the path that will
lead me to that bridge
and onto the path i desire


Ogden Water is a local nature reserve surrounding a reservoir local to Queensbury where I live. It is a lovely place to go for a run or walk and is very popular with people who visit it all year round. There is a path around the reservoir where you can take a leisurely stroll with children and dogs, or you can go for a nice run safe in the knowledge that there are no cars trying to kill you! Alternatively you can head up into the woods and run the trails that take you through them. This gives you the opportunity to try running off road in a reasonably safe environment without going too far too soon and getting yourself into trouble.

However as I have recently found out Ogden Water is also the venue for a New Year’s day fell race, the Giants Tooth, where competitors race up to the Giants Tooth from the carpark up the trails through the woods and on the surrounding path back to the carpark. The race is around 3 miles and is run at a fast pace.

On Monday 7th I decided to do a recce of the route. I printed off a map I found on the internet of the approximate route and familiarised myself with it. The trial up to the Giants Tooth is easy to navigate and whilst steeper than I realised should not present too much of a challenge for anyone who has been running. On trails it is not too dangerous either although care must be taken when ascending the first climb as there are some wooden sleepers that act as steps but in wet and muddy conditions can be dangerous is a foot is misplaced on them.

Once at the Giants Tooth most of the climbing has been done and you are treated to some stunning views over Thornton Moor, Queensbury and Halifax. If you are racing though you will not have time to savour the views as you will be too busy trying to get your best time! However this was the point where the familiar became unfamiliar and not for the first time I took a wrong turn and whilst not lost I struggled.

I tried to remember the route from the map and decided that out of the three paths in front of me I would take the one that took me furthest away from the woods assuming that this would be the route as the other paths may make the total distance too short for the race. So off I went running through water and mud as is the norm at this time of the year, following a vague trail through the marsh reeds.

Soon I came across a stile, not uncommon and climbed over it and looked for the next trail path. I soon spotted this and began a descent down a step and at times tricky path but one that was by no means unrunnable until I got near the bottom and the path disappeared. This was worrying as I needed to cross a stream at the bottom and begin an ascent back to the woods. I looked around for a stile but could see nothing. Not wanting to damage what looked like a newly erected barbed wire fence I looked for the safest descent to the stream and carefully began to negotiate a steep embankment where I had to create my own path as there was not one visible.

This was where the familiar became unfamiliar for me. I thought I knew Ogden Water and I thought I had walked and run most of the trails around it. However this was a new part of it for me and all of a sudden I felt very isolated from the outside world, hidden in the vee of a valley away from all other life. I was stood at the bottom of a small valley surrounded by nothing but marsh reeds, water and mud. I knew there would be others walking Ogden Water and the moors but there was nothing to indicate any sign of life.

This made me realise how dangerous running off road can be sometimes. You may think you know an area intimately and then decide to take a new path out of curiosity and find yourself in a place that is at once unfamiliar, dangerous and exciting. What is dangerous for me is that I never take my mobile phone with me on a run so if anything was to happen I would be stuck on the moors on my own with no way of telling anyone. If I had broken my ankle on Monday I may very well still be on the moors lying at the bottom of a valley.

Today was not to be that day and I continued my run which was now reduced to a crawl, up a steep embankment looking for anything that might resemble a path. I scrambled up the rest of the embankment and eventually found something resembling a path which led to a stile and back to the safety of the woods.

The rest of the run was on familiar trail paths and my pace picked up immediately, at some points surprisingly so according to Strava! And at the end I had done around 3 miles and felt a sense of accomplishment having discovered another part of Ogden Water. I completed the run in around 42 minutes which isn’t a great time for 3 miles but considering the descent and ascent of the valley I felt reasonably happy with it. If I go a different route I should be able to knock at least 5 minutes off that time.,

I’m sure that Ogden Water has no more surprises for me but you never know! Next time I do a recce of the Giants Tooth I will take a slightly different route that doesn’t go as far off the usual track and also have someone with me who knows the route. That should help me improve my time!