Although I was generally a happy child, there was an underlying recognition that I did not fit in. I did not question why until my teenage years, and just got on with the life that had been given to me. Not questioning and not really being bothered by my difference was probably my saving grace because it prevented me from getting down or unhappy. I was in my own bubble, and I had no insight into my difficulties, no recognition of a peer group that I was expected to emulate, and a blithe unawareness of the concept of embarrassment or public opinion. Yet I was still aware that I was not made out of the same cloth as the other kids, because, unlike them, I was a perennial loner, and struggled to learn in the classroom.
For my parents, it was a different matter entirely. They were concerned by my inability to learn basic tasks, such as tying shoe-laces, and by the constant criticism from teachers who told them that I was disrupting the other kids in the class. They would constantly say, ”we cannot understand Anna”; ”she’s a brilliant reader, yet her comprehension is much poorer than it should be for her age, and she has no number sense”.
Towards the end of my years at primary school, I first heard the word ”disability” applied to my difficulties. This ”disability” meant that I was given a placement at my local C of E secondary school, which offered 5 places a year to non religious families who had a child with ”special needs”. My parents, unknown to me at the time, had to fight for this placement, and had to attend a tribunal. They argued that I would be too vulnerable attending the large out of town high school, because my problems with spatial awareness would make it hard for me to cross roads. I was told that my ”disability” meant that I had to leave class for a few hours a week to attend the learning support base, or ”room 6”. This room had a stigmatic aura surrounding it, and the fact I needed this academic support, made me feel as though I was tarred with some invisible brush.
I knew by age 11 that I was a bit different, but I felt that I would change as a teenager, and that by age 20, I would be a social butterfly with friends, a job, and independence. I was keen to forge a better reputation for myself, to start anew, and to leave my loner status behind me. It was not long before my hopes were rudely dashed by one social rejection after another. Why, I wondered, could I not make friends? Maybe my parents had not socialised me enough; if they had only sent me to Brownies or after school dance classes, maybe I would not have so many problems. ”What are you supposed to talk about?”, I asked my mum. ‘She replied, ”you just know…conversation develops naturally”. Well, it didn’t for me! I knew that making comments about the weather was considered good practice, but I could not carry the conversation forward beyond saying, ”it’s a nice day outside, isn’t it”. I would say this in a soft, quiet, polite voice, which I now realise was an early exercise in masking, which means the way in which some autistic people hide their difficulties by copying others. Yet my quiet facade did not help me make friends. Eventually I gave up trying. I tried to get social contact in other ways by being deliberately silly and inappropriate in order to get a reaction from other kids. For example, I would talk about taboo subjects, such as bodily functions, that always elicited a laugh. But the girls would say, ”we’re not laughing with you, we’re laughing at you”. Because I was still very indifferent to peer ridicule, and had an undeveloped sense of shame, their disdain did not put a curb to my strange behaviour. In fact, their ridicule spurred me on to be even more inappropriate. For example, I would stare hard at two popular girls, who would get angry with me, but their reaction just made me laugh.
However, despite appearing not to care, the reality is that deep down the peer rejection was insidiously gnawing away at my confidence and self esteem. I began to feel increasingly weird, and I did not know why I was so different. What is wrong with me?, I would wonder. I carried on blaming my parents, and my strong and obsessive interests in the actress Kate Winslet and babies provided me with a safe refuge where I could avoid questioning my life too deeply. My way of being was still to just get on with things, instead of being introspective and depressed.
I sincerely believed that I was the only one who struggled with making friends and understanding school work. As a teenager I was still very child like, and my parents helped me with tasks that most teenagers can do on their own. However, I carried on believing that my problems were caused by other people. If my parents suggested that my brain was wired differently, I would get extremely angry.
Being in denial about my difference was protective in the sense that I never got depressed, but it also prevented me from getting the right support at a critical age. Because I was so confused by the world and could not understand the the grey areas within safety instructions, I developed disabling OCD because I was so worried about the risk of getting ill. This meant that I held my breath in class to avoid breathing in germs, which severely affected my concentration and ability to learn in the classroom. I told no-one, not even my parents, about my breath holding, but my parents noticed the obsessive hand washing, endless ”does it matter if…” questions, and refusal to eat certain foods, such as meat, that I felt might be contaminated.
My parents support enabled me to attend my local University. I was not able to work because of my difficulties, so University meant that I at least had something to do with my time. I was still, developmentally speaking, very young and immature, and I was not ready to leave the safety net of education.
It was during the last year of University that my parents finally cajoled me into seeking help, with the threat that they would confiscate my Kate Winslet videos, if I did not receive therapy for my OCD. At first I refused, but once I accepted that I needed help, a huge veil had been lifted from my mind, and I felt a sense of liberation and place in the world. I accepted that I had OCD and that I was not the only person with problems. Yet, the OCD only accounted for some of my difficulties. As I voraciously read books about OCD and psychology, I still could not find a place where I completely fitted in. I then remembered that my parents had mentioned the possibility of Asperger’s, and so I gingerly decided to read up a little on the subject. I had hardly any knowledge about the condition, other than that my mum’s friend’s son had Asperger’s, but he went to a special school and seemed far more ”severely” affected than I was. As I read a bit about Asperger’s, it all seemed to make sense. So there is a place for me, after all, I thought. This realisation was the start of the road that led to my diagnosis, once I had managed to secure a referral to the Adult Autism Team.
Autism and psychology then became a special interest, and I read endless books about overcoming anxiety. I finally took ownership of my problems by actively trying to improve my life and access the community. I could not have achieved this without the amazing support from Autism Sussex and LIMA (Low Intensity Autism Management), but my own will power and positive outlook definitely had a large role to play in my self improvement.
Ten years ago I finally discovered that I had a place in society, that I was not alone, that I was not just a ”weird loner”, that there were others who had also gone through life on the fringes. I am still processing this momentous new piece of knowledge, and the past still affects me in untold ways. Although I’m not depressed (which is quite rare in the autism community), I do struggle with feelings of low self worth. However, by raising awareness of autism (my home country and source of identity), I can help to put old demons to rest. I want to say loud and clearly that I do exist and that what happened in the past was not okay and must not be allowed to ever happen again.