I had developed a phobia of being in the water. Swimming wasn’t compulsory but they liked to take us to the pool. I really didn’t want to go. They made such a fuss about it. To people who love swimming, it might sound like I was just being difficult, but when you are that age and beset with crippling anxiety it is a big deal. They seemed to think I was just trying to get out of it. When they did eventually relent and say I didn’t have to get in the water, they made me take my school books and sit by the side of the pool and do some work. I felt like such a pariah and thought I was going to be sick in the stifling heat and the clawing smell of chlorine.
I would have lunch in the canteen, where children were expected to eat everything on their plates. On one occasion I wasn’t hungry so I left some food. One of the dinner ladies called me back.
‘Sophie Crockett, you haven’t finished!’ she shouted. I tried to say I wasn’t hungry but she wouldn’t listen.
I burst into tears, ran out of the room and locked myself in the toilet, refusing to come out for the rest of the day. I must have spent three hours in there. I was too scared to come out until I could go home.
I hated school so much I would cry and beg my parents not to make me go back. At night I would lie awake sobbing at the thought of it the next day.
‘Please don’t make me!’ I begged every morning. It led to terrible outbursts.
We now know that children with autism are prone to outbursts. Mine were nearly all related to school. I just hated it. I felt the school didn’t care. They didn’t have the patience. It was a horrible time.
I enjoyed schoolwork mostly, but mathematics scared me. I developed a big phobia around it, but the teachers didn’t help. If I didn’t understand something, instead of showing me a different way they’d show me the same way but louder. I thought, You just said that and I didn’t understand it.
Every day at 11 a.m. our maths lesson began. As the time approached I started to stress. My mind would go blank and I’d panic when the paper was put in front of me. I used to hide in the toilets or, if I couldn’t get out of the classroom, I would write down anything just to get it over with, and then my work would come back with a big cross on it.
There were two girls in the class who picked on me. At first they said if I helped them with English they would help me with maths. They used to copy my English work, but the teacher thought it was me copying them. The girls blamed me. It was always the same. No one would believe me. My maths didn’t improve, and it got to the stage where I wouldn’t come out of the toilets or I would get a headache and beg to go and sit in the library, where it was quiet.
The library became my sanctuary. It was there that I confined myself when my class was away on a trip, the thought of which scared me. I read all kinds of books, including the Ramayana, the ancient Indian epic fable of heroism and tragedy, and several by Charles Dickens too. My favourite was Little Dorrit, his commentary on society’s treatment of the poor. It might not be one of his most famous, but it’s a very understated novel and, to me, a truly wonderful book.
I enjoyed reading poetry too, particularly the works of William Wordsworth. By the time I was eight I could recite all the lines to his most famous work, ‘Daffodils’, which many people know only by its opening line, ‘I wandered lonely as a cloud’.
I spent so much time in the library that it became a running joke with the teachers. They’d walk past and make snide comments like, ‘In the library again, Sophie?’ They probably had no idea the effect their comments had on me, but it felt like they were mocking me and they wounded me deeply.
My whole school experience was exhausting. I never knew what might trigger my anxiety attacks. The uniform was polo shirts, cardigans and trousers, which I was happy with because I wasn’t in the least bit fashion conscious and I liked the fact that everyone wore the same thing. In summer, however, the girls wore gingham dresses. I hated mine, as it wasn’t the same as the other girls’. It was made of a looser fabric, and I was convinced it made me different when the last thing I needed was to give the other girls any excuse to single me out.
Despite all these issues, I was still one of the top students. The teachers might not have recognised it, but when the class sat a literacy test I scored the highest, with a reading age of 18. I was proud of my work and strived to do well, but my condition, or whatever it was that affected me so severely, was getting out of control. I was desperate to stay off school. Every day was a battle. Sometimes I would get to stay off or I would go every other day if I could be dragged in.
It got to the point where my mum and dad stopped forcing me to go anywhere. It seemed that the things other children enjoyed were denied to me because of my extreme anxiety. I was just locked in myself. I was nine years old and felt like an alien – that I didn’t fit in with this world around me. And on top of that was my belief that I could see spirits around me and hear what they were saying. People seemed to be contacting me, telling me they had passed on. They appeared before me. It was scary. Why were they communicating with me? It was a deeply disturbing and difficult time.
Against this backdrop of worsening behaviour, my parents, who had been trying to keep my issues secret, hoping it was a stage I’d eventually grow out of, decided to ask for help. They went to the doctor I had seen about my asthma. He referred me to a mental-health team, and for a while I was seen by a number of psychiatrists all over the region. One suggested I take Ritalin, the drug used to treat children with attention deficit hyperactivity disorder, while another suggested I start the contraceptive pill to stop me from going through puberty. My parents flatly refused.
It felt like no one had an explanation. That was until we were referred to Dr Latif, an expert in autistic spectrum disorders at the University Hospital of Wales in Cardiff. I felt incredibly anxious and worried before I saw him, as I did with anyone I didn’t know. My legs were actually knocking together and my hands were shaking.
I had a habit of walking on my toes, as I didn’t like the feel of my heels on the floor, and as soon as I walked in he pinpointed it straight away: ‘You have Asperger syndrome.’
He asked me a couple of questions, but I couldn’t answer him, as I had terrible difficulty in communicating with strangers at the time and I couldn’t make eye contact. This only seemed to confirm his diagnosis.
Asperger syndrome, or Asperger’s, he explained, is a form of autism. People who have it are often above average intelligence but can display learning difficulties. As with other forms of autism it is a spectrum condition, so while people with it might share certain challenges, it will affect them in differing ways.
‘With Asperger’s,’ he said, ‘you will see, hear and feel the world differently to other people.’
That immediately struck a chord. Here, finally, was someone who understood what I was going through. I could see the relief on my mum’s face. Throughout my childhood she had shown nothing but unconditional love, but there were many times when she’d questioned what exactly was the matter with me. We had all wondered, many times. Now there was an explanation.
Dr Latif explained that although Asperger syndrome was something I would have for life, and was not a condition that could be cured, it could be managed. It was a fundamental part of my identity that needed to be accepted and understood.
He gave my mum advice on how to manage the condition and advised her to buy books on Asperger’s. He said he would write to the school explaining the diagnosis and advising ways in which they could help alleviate my anxiety.
At last there was a name for what I had. The impact that had on me was massive. Maybe I wasn’t such an alien after all. Surely this would make a difference, I thought. My teachers would understand, the other children might begin to accept me more. It could be a new beginning for me. It was a massive relief for us all, because now my parents could get help. They had been in the dark until then, but now they thought, Okay, it’s a condition we can read about