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