Childhood: growing up undiagnosed



I did not develop an awareness that I was different until I was about 10 years old.  Therefore my  early childhood was a lot better than the teenage years, when I began to realise that I was not like the other children. My parents, though, had vague concerns about my development from when I started nursery school at the age of 3. However because I was their first child and they did not know that much about typical child development, they were quite out of their depth. They certainly did not know that much about autism. According to my mum, every time I was asked to do something I would giggle and try to run away. I was an incredibly hyperactive child. I was also very independent, and had to be watched at all times in case I walked off. The nursery school staff were concerned that my motor skills were slow to develop. They also told my parents that I was disruptive during story time. I could not sit still, and so I bounced up and down on the bean bags. I remember a teacher putting me on her lap and holding me firmly down so that I could not escape!

I was a very enthusiastic and generally happy little girl. My favourite subjects were food and nursery rhymes, which I sang at the top of my lungs.  I had memorised a whole repertoire of songs. My dad has said that I was like a wind up toy – once I started singing I did not stop singing, and the volume was very loud! Indeed, I could not do many things quietly. From a young age, if things did not go to plan, or I was prevented from moving around, I would have the most explosive tantrums. I was the complete opposite of my brother, who protested very quietly, and did not keep up the protest for long.

I was very chatty as a small child, and I took an interest in other children. I liked to run around them and giggle, which was a little game of mine. At nursery school I was friends with a girl who was a year younger than me. We played a game which involved hiding under a chair every time we saw a teacher. The friendship did not continue beyond nursery school.

My social difficulties only became apparent when I started primary school. I looked forward to starting school, and I remember getting very excited  when I received my brand new lunch box, which evoked strong images of food. As I walked to school with my dad on my first day, I fell over and grazed my knee. I remember feeling very shy and anxious as my dad chatted to the teacher, and I hid behind my dad’s leg because I did not want the teacher to look at my knee.

I did not know how to approach the other children in my class. I spent most of the lesson in the reading corner, where I would read aloud or recite poems that I had learned from my dad. The teacher noticed that I was all alone at play times, and so she told two nine year old girls to play with me. Every break time we played dungeons, and I was always the dungeon keeper. I would run after the girls, catch them, and take them to the corner of the playground, the dungeon – ”here are your rotten carrots and stale bread”, I  would  then say.  I assumed that the girls would always be there to play with me. But one day the girls had disappeared and I found that I had no-one to play with.

One day, when I was five years old, instead of filling in my work sheet, I decided to draw pink hearts on my skirt with a felt tip pen. The teacher was very angry and I was taken to the office where I had to change into my PE kit. I then remember standing in the playground all by myself, shivering with cold because I was only wearing shorts and a t-shirt. I was sobbing to myself because I felt incredibly tired and rather unwell. Children were running all around me, it was very noisy, and I felt overwhelmed and tiny. No-one came to my assistance. I felt very alone.

Although school could be overwhelming, I initially was quite happy to go to school. But this all changed during the first fire alarm practice.  The class had been told beforehand what fire alarm practice involved, and that it did not mean that there was a real fire. I had either not been listening or had completely misinterpreted the situation, because when the alarm went off, I was convinced that the whole school was burning down in flames. The next day I screamed as my parents tried to take me to school, and I needed a lot of reassurance from the teacher  before I could enter the classroom.

At my parent’s first meeting with the year one teacher, they were told that I was not interacting with the other children. The teacher told them to  talk to the other parents in order to try and help me make some friends, which was not particularly helpful advice. The teacher also called me an ‘enigma’ because, although I could read incredibly well, it was without understanding. Therefore I was given very easy books to read that were not commensurate with my wide vocabulary. The teacher also noticed that I had no number sense, and that I still could not do really basic puzzles that were designed for three year olds. My parents were told to spend a lot of time teaching me basic skills, but the teachers failed to adequately support me themselves until I was in year 5. It was in this year that the teacher took the initiative and got me assessed by an Educational Psychologist and Occupational Therapist. The assessment revealed that I had a very uneven skills profile. I had a good verbal IQ but a very poor performance IQ, and the report also flagged up my social difficulties. This report helped me get into a secondary school close to home, because I was given a place on the school’s special educational needs placement scheme. Between the age of  9 and 10 I began to realise that I struggled to learn at school, but I did not think too deeply about it at this age. I was yet to be bothered by my social difficulties, and I was quite happy and content.

I finally made a friend at primary school when I was nine years old. The girl came to my house for tea, and we enjoyed playing ‘teachers’ and other games. However I often broke up with the girl whenever she played with  anyone else because I could not share friends. Therefore, I often disrupted her play. A lot of the time I had no-one to play with at break times, or I played with children who were much younger than me. During lessons I  was very disorganised, and the teacher often said that I had my ”head in the clouds”. Of course  I was not actually looking at the clouds (this is a strange expression!), but I preferred to look out of the window than to do any work. I only paid attention to my work if it involved something that interested me, and then I was transfixed.

As my childhood came to an end I was blithely unaware of how profound my social difficulties were, and I looked forward to becoming a teenager. Little did I know what was in store.


Me on holiday in Devon, summer 1991. I had just turned 4 years old. In this photo I am pretending that I am pregnant with my toy rabbit. Contrary to the stereotype, I did have some imagination.