My Song

http://apexvoiceoutside.org.uk/siobhan/

My Speech on Autism

Hi I am Siobhan and I am here to share my experiences with you

We all have a child inside……

What makes one different with autism?

I hope I can help you understand.

Sensory Awareness

Hearing

When I was a young child, my hearing was super sensitive so much so that in a busy place with all round sounds, everything merged and I could not hear people speaking until they were waving their hands in front of my face. At quiet times the smallest or sudden noise would make me jump. Equally I did not like places which produced echoes such as bathrooms and school corridors.

Voice

Because I did not hear things clearly my speech was muffled and others found me hard to understand.

I found this very disheartening so much so that I found it easier not to speak at all.

It would have been much better if people had spoken clearly to me in quiet surroundings.

Eyes

At night if a bright light was turned off and I was plunged into darkness, it would leave an image of a large intricate sphere which felt like the alien anxiety that controlled me everyday.

This can be eased by leaving a low or coloured light on when turning off the main light.

I never looked at people in the eyes so I did not come across as believable.

Feeling

As a baby I was highly sensitive and could feel different textures but as life got busier noisier and brighter, I went into shutdown and then lost my sense of touch until my mid 20s.

I had many allergies growing up and my parents had to strip out all the carpets and bedding in my room after I went into a coma aged nine years. I was tested and found to be allergic to most of the common things.

I did not like wool as it was itchy and very uncomfortable and would make me sneeze lots.



All the senses

Over all I felt slightly tranquilized and this meant I was delayed in responding to people and I also felt dreamlike.

Due to sensory overload I would slip into ‘Tunnel Vision,’ the end of the tunnel would split and I would be found staring into the abyss.

This was not a problem for me no matter how long it lasted, but unfortunately it annoyed others who were left outside my tunnel.



Literal Thinking

Growing up was a very difficult time for all of us. The gimmicks and jokes are very hard to follow when you think in a literal way.

Pull your socks up - I would crouch down immediately and pull my socks up

No No I would be shouted at by my parents and they would get frustrated because I did not understand.

Has the cat catch your tongue - I would stare with a quizzed look on my face

And I would see a cat with my tongue in his mouth as I never understood.

This would effect game play also as if I saw a tyre on a rope and other children swinging on it. I would be quizzing over the tyre that should be on a car not the rope. Due to this wrong in life I would be found standing aside.

Because I did not understand jokes and behaviours I would try too laugh at the same time as others and pretend I knew. Sometimes I would get it wrong.



Play

I enjoyed playing alone. I felt uncomfortable around other children because they seemed so unpredictable. The noise of the children screaming would echo and hurt my ears making me more disorientated.

It was better when one child joined in with my own interests and

fascinations in a quiet way.



Copy behaviour

Its hard to understand why you are different than the other children, as they seemed to find things so easy and its like you have missed a trick and are the one left behind all the time. To survive and get through you would have to copy others - some kids recognize and support you - but unfortunately others notice you copying and realize your weakness and would find you an easy target to bully.

I did not know my brain was not functioning in the same way as the other kids.

Behaviour

When people would tell me off by shouting , I could never make sense of the vicious words so I used to think I was being told off due to being different and would often fail to see why I was being told off at all.

Teaching an autistic person right from wrong has to be done in a gentle way.

I had an inability to express emotions. I was neither aggressive or happy or sad. I just was. If upset I had no emotional reaction. This lead to depression especially in my teenage years. When I eventually did cry, it felt as though it was not me. Every emotion had to be practised to make it feel real. Initially, no emotion felt real. Later, emotions became mixed into one which resulted in what was perceived as outrageous behaviour.

Boundaries

Every one has boundaries but for autistic people it is very important due to sensory overload. I am no good with people moving in on my space - If I cant move my arms around then you are too close. If I begin to feel overwhelmed due to some ones close presence I will eventually lash out. This is because I can not say how I feel.

It is best when other allowed me to go to them when I feel ok to do so.

　

Repetition

By 19 years the pressure became too much. I broke down and was wrongly interned.

Here I became institutionalized and in the ten years I was in and out of the mental hospital I felt comfortable with its routine so much so that I found it hard to live outside as everything had been done for me.

I felt disoriented and destructive when discharged from hospital. Because I had no pattern to follow I would regularly go into violent rages and became a danger to myself.

I would self harm just to get back in.

It would have been much better if I had been trained into a routine which I could have used outside.





　

Self harm

When an autistic person is trying to explain their experiences of life it is demeaning if the listener replies, “I know how you feel, its happened to me” or “I felt like that.”



But the speaker is trying to explain autism and the listener is not autistic and can not have experienced it in the same way. This leads to a feeling of failure to explain their condition clearly. This can make one speechless and can lead to self loathing and sometimes self harm.

Empathy is best achieved by saying ‘I have experienced similar things but it must be even more difficult for you as you are autistic.’



Reinventing myself aged 22

My C.P.N helped me to give eye contact in the town. This is when I realized that I had not been aware of my surroundings before.

Looking around and taking things in confused me and bought on anxiety attacks. I realized I was behaving differently and to avoid feeling bullied I needed to practice acting like everyone else.

To act like them would be to know them more and without eye contact you don’t really know anyone

I started putting eye contact to the test and started in shops and soon found out that no one was going to really bite my head off for looking . I realized that this massive thing which was a problem for me all my life was not a problem for everyone else.

Therapy

It is important to have some therapeutic activity as part of a daily routine as this can help relieve repetitive negative behaviour. For example, becoming an artist added routine to my life and assisted greatly in the move to positive behaviour. Without it, the temptation would be to self harm especially in institutions where negative behaviour can be copied.

The main thing with a person suffering from autism it takes great courage in making their first small step towards a structured adult life.

Living with Autism

Living in a Goldfish Bowl  

‘HFA is what you have’
‘Oh wow, so what does this mean?’

When I was 30 I was diagnosed with Autism and I knew that there was something different about me as I could never quite get to the root of my problems and why I felt the way I did. Mum said I was a happy child, very easy and never cried. I would not wake for feed and was always quiet. She also said that I would surprise her sometimes when I worked out a strategy toy in two weeks when they were supposed to take 6 months.

‘Fabulous Fred’ was my favourite toy with soft lights which spun and simple monotonous games you can play on it. The low tone sounds it made were comforting. I would carry it everywhere under my arm.

I grew up in a happy outgoing family who liked to move around and enjoy the good life. We lived near the lovely dreamy Cornish coast and my parents were hard workers. They ran a guest house on the beach and this is where we held many family parties. Aunties uncles and cousins would come and celebrate and Christmas time was very busy. While everyone was enjoying the drink and laughter, unknown to them I felt troubled and nervous, although I hid it very well.

As a child I spoke very little and I often played on my own. If my cousin was around she would try and join in with my games. I was wild and often called mad and crazy and my cousin told me that she was always a little nervous of my behaviour as she never knew what to expect next.. The funny thing is that in school I was a different child, aloof and very shy. Teachers accused me of not listening and felt that if I would only communicate more with the other children then I might do better in class.

In some lessons I had very low grades and others like maths, PE and art I excelled in.

Art became my special subject and unknown to everyone I often drew shapes with my tongue in my mouth trying to make sense of perspective. Mainly all the family knew that I was a little artist and would always make sure I had some drawing materials at hand.

I knew I had an invisible illness that no one else could see and I always felt like I was in a glass cocoon and my hearing would often merge into patterns of sounds. This meant that I would often find people shouting at me before I heard them, frustrating for my parents and my sister. I also had a real problem focusing as I would be found mostly staring into spaces for long amounts of time. This did not help in school either as I became an easy target for bullying. In Senior school I was pushed around everyday and the bus journey was the worst as I had to travel, eight miles home with the bullies. I often came home with bruises, cut bags or ripped clothes and I found out eventually that giving them things they wanted would sometimes save my skin.

I carried anxiety around every day and I would feel extremely anxious in school. Dinnertimes and break times felt tremendously difficult for me and many times due to the immense pressure I would faint and wake up in the nurses’ room to be sent home.

In my late teens I was still mumbling words when I spoke and no one could really understand me most of the time. It felt like I had a poisoned apple wedged within my chest and as much as I would like to speak I couldn’t - I was slightly better with one to one conversation and throughout my life I have always clung on to one friend.

I understood I had a speech problem and made a special effort to practice on my own in front of a mirror every day and before long I began to speak a little clearer. I just forgot to give eye contact when I spoke to others so they did not take me seriously. People also found me laughing out of context.

I remember well when I was quite young and at school, I had a bad fall and injured my knees but also my hand. I went to the teacher to have my injuries tended but all her attention was spent on my bleeding knees but not my hand which really hurt. I was unable to explain this as the words were held back by something. Another friend had to point out my injured hand to the teacher who dismissed it. Autistic people do hurt, but they often cannot say so. They often do not scream or cry. As a result of this, I ended up playing netball with a broken finger which is still deformed to this day.

Aged 17, I went on the Youth Training Scheme working with the elderly. I became a very good worker as I was always on time and everything was done exactly as they wanted. I was too afraid to make mistakes and the elderly seemed to like me as I was a placid girl. After a time I found myself working up to 70 hours a week and my parents complained as I was over worked for an extra £10 bonus. So I was moved to another place and the same thing happened again. I was finally moved into a nice home which had a friendly family environment. Everyday the boss would sing ( ‘Have You Ever Seen a Dream Walking?’). I just kept smiling and walked away as having a fixed smile got me through most things.

At age 19 (1989) I became very frustrated with others around me not understanding and this reduced me to fits of rage and I became a high risk to myself. I was then admitted into a psychiatric ward and this became a place to reflect on my history . At this time I had felt that life had been one big punishment for me and I was very confused. I always copied others to get through life and now I found myself copying bad behaviour and this resulted in self harm and attempts to take my own life.

Then came along a wonderful Community Psychiatric Nurse and she helped me to understand communication, eye contact and so on. I learned so much from her and I felt that if I was to survive in this world then I needed to put everything she was telling me to the test and build up a character of my own. I started to feel like I was coming out of my glass bubble.

I was in and out of the unit throughout my 20s and was mislabelled with a ‘Personality Disorder‘.

After I was ill the first time and during my second stay in hospital, the nurses were making a special effort trying to drive me into some art therapy. Then one day I drifted into the class by mistake and the therapist said its was quite okay if I wanted to join in. So I picked up a paint brush and I have not put one down since. I then built up enough courage to go to college and do an Advanced Level in Art and soon after a Foundation in Art at Falmouth school from 1994-96. It was still very hard for me to communicate but I met some really nice people in college.

I had a real need to be accepted in society and in the early 90s the rave culture was new and I loved music a lot as in hospital I would never take my headphones off. Through meeting with others who went to parties I was often offered to tag along. I loved dancing and this was the first place I felt free with my ‘mad self’ and others accepted me for who I was. I did not like the drug side as I did not like feeling stranger than I already was. I became fascinated with the decks and soon bought some of my own. I would play all nights at home and became a very good mixer. The spinning of the records became a new home comfort as I loved any thing that spun or had movement. Soon after, others started to realize how good I was at DJing and I was offered to play out. I became a very popular DJ with a following. I liked having my own space behind the desks and being able to control the music was a bonus. I loved seeing so many people happy.

In my late 20s I came across a studio to rent and felt that it would be good for me as I knew the other artists there and I could be a part of a small community. For my health it became my little sanctuary and I could work on a larger scale and express my self though my paintings.

At age 30 I fell back into the ‘system’ even though I would say to myself when you are inside you can lose sight of the outside and vice versa. A friend of mine gave me a book to read on Autism hoping that I might feel that it was me. She then rang to get me an appointment and after a few months I was diagnosed with ‘High Functioning Autism’ (HFA) with concurrence from my doctors and psychiatrist This was a relief to me as I now had a name for this invisible handicap.

Throughout my 30s I felt isolated as there seemed to be no help. I became depressed and unsure as to why I felt abandoned. In fact, there was little recognition for people diagnosed with HFA. It took homelessness in 2007 in order for me to receive any help. Many adults with autism receive no help at all. Depressives do and I suffer with that as well.

I now have my own art studio in a new complex and have become a successful artist in the medium of oil on canvas. I have an excellent following of enthusiasts for my work.

This is by no means a success story. My life has been and still is full of ups and downs and confusion. I have achieved a lot along the way and I am still learning.

The one good thing about today is when I laugh I really LOL

Written and owned by Siobhan Purdy

One Thousand Roses

Purdys Art