My life in pictures
Birth
I was born at 28 weeks which means I was born 3 months too early. I spent almost 3 months in hospital when I was first born, and my parents made the 60 mile round trip every day to come and visit me.
My Mum says the nurses described my condition as "touch and go" and they had to resuscitate me several times.
The photograph on the left of this text is me at 12 hours old.
When I came home my parents very early on noticed that I did not respond like other babies. I didn't snuggle against my Mum and would pull away. My parents are both animal lovers and good at understanding non-verbal communication so the lack of speech when I was a little older did not bother them as I would communicate in many other ways.
My Mum decided to try as many different things as she could to engage me, very early on she found I responded to music and she would play the guitar and sing to me.
Starting school
I loved primary school. I was in the area special needs unit because I had 7 disabilities already identified. The teachers were very kind and understanding in my class. However when I was put into mainstream classes the teachers often struggled to teach me.
My Mum told the school that I wouldn't manage a full day to begin with. Sure enough they had to ring my Mum at lunch time as I was asleep.
When I was 8, I moved to the junior special needs class. My teacher at the time noticed that whilst I didn't have as noticeable behaviours as some of my class mates (e.g. biting others arms, smearing poo etc.), I seemed to really struggle with the transition. My teacher, Mrs Westrop, asked my Mum if she thought I was Autistic. My Mum agreed and this started the diagnostic process. It took 3 years to get my Asperger's diagnosis.
I did year 6 twice as it was felt this would give me more time to mature. However they tried to mainstream me, but the teacher and the other children did not want me.
After a incident of being told off after being tricked by my classmates, the teacher never had me in her class again.
High School
The SENCO (Special Educational Needs Co-ordinator) was very good at planning the transition from primary to secondary school. My big fear had been toilets so we spent a lot of time overcoming this.
Everything was fine to begin with, however after a minor misunderstanding with another pupil, their elder brother got his friends to lock me in the toilets undoing all the work which the SENCO had done.
The LSC (learning support centre) got dubbed by bullies as the ‘little spastic centre’ and the toilets close by it were often frequented with bullies who would look over the top of the cubicle while you were using the toilet.
In the summer term my parents couldn't find me black sandals with a hard back (which I needed as my feet roll over due to lax ligaments, poor muscle tone and hemiplegia), so they bought me very dark navy sandals and put on black shoe polish. The teachers did not notice until the bullies drew their attention to it.
I became extremely miserable, I didn't have friends and was so lonely.
The Maths teacher told me long division was past me.
Next High School
My parents decided to move me to another school. The bullying was a bit better, although I was still called a spastic a retard and a freak, I had very low self esteem and didn't get good grades.
When I look back on this time I see that I needed a different environment. I was overwhelmed and was not learning anything.
One person who really helped me was the IT teacher. He did 3 things which made a difference:
1. listened to me, and let me know he was listening in a meaningful way.
2. Gave me clear boundaries like a 3 a day question limit.
3. Gave me a place in the community by involving me in the website and a open evening.
College
I got kicked out of school. (Technically my parents were given a strong message that I would no longer be tolerated).
I went to 3 colleges as I learnt after 2 terms that when I worked hard I could get good grades (which did not happen at school). I started on a GNVQ IT course, then went on to a technical IT course, then a retail course then an art and design course.
Each time I built on the skills I had learnt on the previous course.
However, in my second college I was still bullied. But I was given the opportunity to join a social group of other Autistic students. As a group we had many similar problems. We all said having training for staff and a safe space we could go would be important improvements.
I and 2 other students started teaching the teachers about Autism. I really understood at this point that if I helped non Autistic people understand Autistic people, then non Autistic people could help me understand non Autistic people. This meant I could alter my behaviour to avoid being bullied.
University
When I was at school I thought that I would be homeless and a drug addict by the time I was 21.
When I was 21 I started my only year so far at university. I studied creative online design at Anglia Ruskin University.
I got good grades (3 A's 4 B's and 1 C ), but I took a sabbatical to focus on my autism work, which had built up over the year. I had started mentoring young people, and also started volunteering with the NAS (National Autistic Society) which led me to be on Channel 4 news. This in turn led me to a opportunity to apply to the Charlie Bayne Travel Trust which gave me £600 for my first trip to the United States of America to visit UCLA (University of California, Los Angeles).
Travelling the world
I loved my first trip to the USA. It was both scary and exhilarating. I learnt a great deal. I am constantly surprised by just how many different ways there are to experience being a Autistic person and the different attitudes, beliefs and approaches there are around the world. I continue to build my training career as I wanted people to have better experiences than I had, and I continued to learn about others.
Living independently in London
For the last 10 years I’ve lived in London. I’m an Honorary Research Associate at UCL (University college London) and a member of the core team who were awarded the 2018-2020 Wellcome Trust Hub Award. I paint and use inks, and play the trumpet (a lot).