Asperger’s Syndrome is a neurodevelopment disability which comes under the umbrella term of ‘Autism.’ Autism is said to affect around 1 in 100 people and those with it struggle with things which other people don’t, making their lives harder to live than that of a typical individual.
Many people I’ve known throughout my life have perceived autism as a very square concept; believing that all autists have the same traits and all share the same experience. The stereotypical idea of a child with autism is the kid who sits in the corner of the classroom, banging their head against the wall and who is unable to communicate ‘normally.’ Consequently, the stereotypical concept of an adolescent or adult with autism is somebody who is socially awkward, doesn’t make eye contact, and who, through no fault of their own, will “never amount to much.” The fact that so many people are so poorly educated on autism and Asperger’s causes even more stress for those who suffer with these disabilities, and encourages bullying and ignorance amongst both children and adults.
The difficulties and indeed abilities of individuals with autism are MASSIVELY variable.
Some may suffer more obviously with the ‘typical’ symptoms of autism, such as social confusion, lack of empathy, little interest in people, repetitive movements, sensitivity to lights and noise, and aggression. These are seen as ‘low-functioning’ characteristics but can also be viewed in cases of ‘higher-functioning’ individuals depending on their intensity and combination of other characteristics. These people who are considered ‘high-functioning’ may obtain the same characteristics as ‘low-functioning’ individuals but they may be less obvious or some won’t effect them at all. Individuals with a higher IQ and ‘normal’ communication skills are also seen as high-functioning (or Asperger’s). However, these terms don’t take into consideration that some people are better at conforming to social norms than others, and beneath the mask of being a functioning member of society, they may be really suffering from more severe autistic traits. The fact that children with low-functioning autism may develop their communication skills significantly by the time they reach adulthood, and those considered to be higher-functioning as children may not develop socially at all, is also not taken into account. The different ‘levels’ of autism are what make up the Autism Spectrum.
The truth is, I’m really unsure of my opinion on the Autism Spectrum concept. Many encourage the use of the word ‘spectrum’ as it advertises the idea that those with autism can appear anywhere on the spectrum and therefore have differing forms of the disability. In turn, this discourages ignorance and displays an understanding that autistic people are all different. But is this right? Do we have differing forms of autism – differing functioning abilities and differing ‘strengths’ of it? Do we have variable autistic characteristics? Can you pinpoint a place on the spectrum where each individual autistic person sits; their precise place on a line or a curve or even a rainbow? NO. You can’t. Because each individual is an individual. We’re not scientific projects and we’re not examples of different forms of autism. We’re us.
I mean, obviously those who came up with the spectrum concept were not intending for people like me to feel like a weird form of an alien: the creation of the spectrum developed gradually from the idea of related developmental disorders and, before that, the idea that autism was a form a childhood schizophrenia. This is a massive positive development. However, since the ASD (Autism Spectrum Disorder) diagnosis came about, there has been little change. I am not saying that diagnosis shouldn’t take place, as it has proved to be one of the most defining parts of my life, but I merely feel that the spectrum explanation is inadequate, especially as the science behind the autistic brain still isn’t completely understood. If each individual case of autism is so different to the next, and every autistic person has varying levels of different qualities within their own personality, how can we pinpoint that person’s place on a spectrum?
However, maybe these strong opinions about the poor little spectrum diagnosis are due to my own feelings about how autism is widely perceived. Maybe deep down I’m embarrassed because of the ignorance of many that, if I have autism, people will think I’m stupid and incapable of work, or that I have no empathy and can’t form lasting relationships. In the recent past, I’ve even avoided telling an employer of my diagnosis and because of this lasted a mere week at the job because I struggled with my short attention span and ran out of social energy. Surely, the fact that some of us feel like this proves that we still have very far to go in the acceptance of autism in society.
I was diagnosed with Asperger’s Syndrome (or high-functioning autism) when I was seventeen years old – three years ago. Unfortunately, late diagnosis is fairly common for females as girls and women tend to be better at masking autistic traits than boys. It is also more common for boys to be diagnosed at an earlier age, and indeed throughout their whole lives, because it is still believed that males are simply more likely to have autism. For these reasons, I was not diagnosed as a child even though I feel it was quite evident throughout my whole life that I was autistic.
One of my earliest memories was being sat at the very edge of a table near some children playing with Lego. The closest boy to me was just building with red bricks. The florescent light above the table was really bright and the children on the table were all leaned towards each other, laughing and shouting so loud. I was scared and wanted more than anything to go and hide; to get away from the horrible loud children and the bright light and the crowded room and the red bricks. I don’t remember anything else, as it was a very long time ago, but my Mum has told me a story that she put me in day care once when I was around 3 or 4. Apparently she got a call from one of the ladies who were looking after me. I had gotten up and taken my coat and started walking down the road. When the staff asked me where I was going I simply told them I was going home. They had to strap me to the back of a mini bus and drive me around until my Mum came to pick me up because I refused to go back inside (which I feel was a bit extra to be honest.)
I went to three primary schools. When I started at the first I’d cry every time my mum would drop me off, as I was extremely attached to her and was scared of the other children. I was badly bullied there by a girl and when my best friend left for another country I moved to another school. Through the rest of primary school, I really struggled forming friendships. I didn’t understand social codes very well and was hostile with most of the other children, and was considered to be the ‘naughty kid’ of the school. I was very strange and did weird things but the teachers just saw this as attention-seeking and disruptive. When I didn’t do work properly or lost focus, I was seen as disrespectful and lazy. Looking back, it was plainly clear that there was something wrong with my social development, but at the time everybody, and even myself, just saw it as naughty and disruptive behaviour that I would hopefully grow out of.
High school was where I learnt to act like a ‘normal’ member of teenage society. I was cripplingly anxious most days for the first few years and was absolutely terrified of the so-called cool kids, but eventually I managed to sculpt myself into somebody who looked and acted fairly average. I became extremely attached to my friends, who I absolutely adored, and I saw the good in absolutely everyone (even the people who were really mean to me.) What people thought of me became my obsession and every single movement I made I felt that I was being scrutinised. I trained myself to speak like everybody else did because I was told my accent was “too posh” and I basically starved myself towards the end of high school so I looked more like the cute skinny girls. By the time I was 16, I was very thin, had completely changed my accent, and had learned how to talk to people without completely weirding them out (although sometimes this still does happen). I’d trained myself to be somewhat ‘normal.’ I was so proud.
I knew I was different though. I found everything so much harder than all my friends did. I had to try SO hard in school to get the same grades other students would get without even trying. I was naturally very gifted in some subjects but others would completely elude me. I did well in my GCSEs but am not ashamed to admit I tried harder for them than I will probably try for anything ever again, and that’s okay – I’d made myself sick from all the revision.
My diagnosis came along in Sixth Form. I was given very high predicted grades for my A Levels due to my good GCSE grades, and felt enormous pressure to reach these. A lot of my friends did not carry on at the school into sixth form and I’d fallen out with one of my best friends over GCSE exams (luckily we’re best friends again now.) I found myself in a friendship group that was increasingly different from me and I spent most of my lunchtimes sat there in silence while they spoke of things that didn’t interest me. I’d changed a lot. I decided I needed to leave the friend group and ‘focus on my studies’ which were getting increasingly difficult. However, I felt very lonely and pressure to make new friends, something which had always been a struggle for me. Social and academic pressures combined and I had a kind of break down. I’d began self-harming and my anxiety was the worst it had ever been as I now had no friends and was really struggling with my classes. My mum took me to the doctor who told me I needed to see a psychiatrist. My psychiatrist diagnosed me with Asperger’s which completely changed my life.
At first, I didn’t want to believe it. I had the view of autism as being very negative and something that weird and awkward people had – accepting it would be an admission that I was one of these people. I went home and cried. This is one of the reasons I feel that education should be much improved about autism and Asperger’s – nobody should feel that way about themselves. The ignorance of others should not cause anybody to feel judged or even judge themselves. The spectrum concept was also another reason why I was struggling to accept who I was. I found that the idea of high-functioning and low-functioning autism made little sense to me as my own characteristics varied so much.
However, over the next few days I did a lot of research into autism and Asperger’s and everything started to make sense (such a cliché sorry.) Throughout my whole life I’d worried that something was really wrong with me. But nothing was wrong with me. My brain is just built a little differently!
Asperger’s and autism is not a negative thing in my life anymore. Yes, it made growing up very difficult, but that taught me an awful lot and gave me loads of strength the ordinary person may not have today. I’m not scared to be an outcast anymore because I know I’m a really cool person and have loads to offer, and if somebody doesn’t appreciate me for me then fuck them. I have grown in so much confidence since the diagnosis and my life has completely transformed. I stopped trying to be ‘normal’ because I knew I would forever be exhausted from the effort – I came to accept myself for who I am. Since I was diagnosed, I found an amazing boyfriend who knows me better than I know myself (and who loves my weirdness – yay,) I’ve got a few wonderful friends, and I’ve reconnected with many of my family.
I’m not completely there yet though – I still don’t tell many people I’ve got Asperger’s. I’m not sure why this is. Maybe it’s because I know what many people think when think of autism, or maybe I just don’t want people to think differently of me – I hope that one day soon I’ll be able to openly talk about it with everybody.
For now, everyday I’m learning to love myself a little bit more and learning to be a little more ‘me.’ It’s a great task for somebody who’s been pretending to be someone else their whole life but I’m loving the journey. Asperger’s isn’t something to be embarrassed about – I wouldn’t be my original, cool self without it and that’s pretty amazing. Asperger’s is my superpower!
Thanks for reading my ramble.
Lots of love,