As far as I’m aware, I was a perfectly normal, healthy baby. I started speaking early and was able to identify the letters on street signs (such as ‘A’ for Anna and ‘G’ for Gwen) from my pram. I suppose the only indication that something wasn’t quite right is that I didn’t do much crawling. In fact, I went straight from shuffling on my bottom to walking. As a child I was pretty hyperactive, roaming around as fast as I could while my poor exhausted Dad followed at a discrete distance. My parents believe in free range children- something I am very grateful for. Despite my energy I had poor muscular control, which manifested itself in playground activities like the monkey bars, and indoor stuff like arts and crafts. When I was four someone suggested that I go and see an autism specialist, and I believe I was diagnosed with Asperger’s Syndrome (and a related condition called dyspraxia) around the age of six.
There seems to be a great deal of confusion regarding what to classify Asperger’s as. It often gets lumped in with learning difficulties and mental illness, but it’s not really either. Asperger’s has no effect whatsoever on the IQ. Therefore, in my opinion it cannot be classed as a learning difficulty. Another misconception that arises from this confusion about Asperger’s and intelligence is that everyone on the autism spectrum is a troubled genius. I vividly remember going out for a meal with a friend of mine. When somebody bought up the subject of autism she confidently stated ‘autistic people are usually very intelligent or very talented’.
I believe the autism stereotype of a troubled genius comes from the fact that many people with autism become preoccupied with narrow interests, for example: monarchs of the eighteenth century. The higher up on the academic ladder you go, the more narrow and specific the area of study becomes. That’s why some people with autism do very well academically. However, it would be untrue and unfair to assume we’re all capable of achieving PhD’s.
As for the classification of Asperger’s as a mental health condition… well it’s just not. I understand the mental illnesses I’ve suffered from (depression and anxiety disorder) to be disorders of mood, caused by personal circumstances and a chemical imbalance in the brain. Asperger’s Syndrome is also located in the brain, but it is a physical disability caused by unusual connections in the neural pathways. Some of the behaviour autistic people exhibit, such as rocking, flapping, repeating certain phrases and not looking people in the eye, may seem crazy- but it’s not. Autism requires a very different approach to mental illness.
I would describe Asperger’s Syndrome as a social awareness and communications disability on the high functioning end of the autism spectrum. (I am also comfortable with the terms developmental disability and developmental difference). Asperger’s is usually characterized by a lack of social understanding, difficulty making friends, poor muscular control, poor fine and gross motor skills, black and white thinking and a difficulty empathising with others. Unlike high functioning autism, children with Asperger’s do not usually experience any delay in speech.
Anyway… back to my diagnosis. I don’t recall Mum and Dad talking to me much about my condition. The few times my mother tried to approach the subject with me, I simply refused to believe it. I was a normal, healthy kid and I would not be pigeon-holed, thank you very much! I had a normal childhood, filled with the tears, tantrums and petty dramas that all children think are so important at the time. I had lots of friends. Although I did receive some extra support at school, I don’t think my Asperger’s was that noticeable until I started secondary school. Everything changed after that.
I have an August birthday, which meant that I was one of the youngest people in my class, and the move to secondary school was very daunting. I still hadn’t come out as an Aspie, although all the teachers knew, and many of them saw it as an excuse to undermine and belittle me. In the first few weeks I remember falling victim to the black and white thinking that tends to plague people on the autism spectrum. I was a few minutes late to a lesson? Oh God… the teachers would hate me, they’d throw me out of the school, they’d kill me!- Of course they wouldn’t. In fact, by the time a teacher realised that I’d committed the kind of transgression that would usually result in a verbal warning, I was usually so tear stained and hysterical they didn’t even tell me off.
In the first year of secondary school I had one close friend, Hannah, but that friendship was also plagued by black and white thinking. When she started making other friends I became irrationally jealous, unable to empathise with her need to hang out with a group of people. (If you’re reading this- I’m sorry Hannah!). When I told my form tutor he didn’t try to explain that most people hang out in large groups and it was wrong of me to want to my friend all to myself. He simply limited the damage by warning Hannah to stay away. I became very isolated. It wasn’t long before I retreated into my own fantasy world, ignoring the other children around me and just focusing on the books I was reading. I engaged in lots of repetitive behaviours like rocking, tapping my feet, rubbing my eyes and grinding my teeth. Most of the time I wasn’t even aware what I was doing, it was just my body’s way of soothing me. But it must have looked very strange to the others. It wasn’t long before the bullying and the gossiping started.
A few years later I did manage to make friends with a few of the misfits from my school. They were all from different classes, and most were from different year groups, so they didn’t know how uncool I was. I’d started going to drama classes at weekends, and although my social skills were still poor I had learnt to smile and adopt a loud bubbly persona in order to get people to like me (looking back, they probably just wished I’d shut up). One person in the group, Dan, knew about my diagnosis as he saw the same support worker as I did. I hadn’t come out as an Aspie to anyone else. Including myself.
The social group that I was part of had its fair share of teenage dramas (no more and no less than the average group of friends), but I was ill equipped to deal with them. People with Asperger’s tend to process traumatic information in small chunks, so it’s easy to become overloaded. I started sleeping late and not paying attention in class. All my energy was going into maintaining the friendships I had in and outside of school, so my grades started to slip. Thankfully, my parents kept on pushing me, and I managed to pull myself together in time for my GCSE’s
This was a very stressful time for me. I was struggling with school work and friendships, my mother had been diagnosed with Cancer and my love life was more complicated than an episode of Hollyoaks. Once again, I’d like to stress that I had no more problems than the average teenager. But my disability made these things much more difficult, and I wasn’t receiving the right support. In fact, my support worker seemed more interested in trying to befriend me than in helping me. She constantly took my side when I explained social problems to her, never challenging my black and white thinking and allowing small issues to become bigger and bigger in my mind.
I did the only thing I could think of to help me cope. I stole a scalpel from the art department and started self-harming. When the scalpel wouldn’t cut deep enough I quickly moved on to using the edges of broken wine glasses. It was a stupid, adolescent, self-indulgent thing to do. But it got me through the next three and a half years.
I now know that self-harm is common among people on the autism spectrum (although plenty of neurotypicals do it too). In my experience self-injury is usually attached to feelings of guilt or shame. For example: one of the autistic children I work with once tried to open the door of the mini bus we were on whilst it was moving. I firmly told him that he mustn’t do that, and before I could even blink he had punched himself on the arm. He was obviously filled with guilt and self-loathing because of the mistake he’d just made. This doesn’t mean that you should never tell off, or criticise autistic children and adults. Criticism is what helps everyone to learn and grow. What you should try and do is help autistic people to put the mistakes that they make into perspective, in order to minimise guilt and shame. We all make mistakes. The black and white thinking that characterises autism can make these mistakes seem like the end of the world. But they’re just mistakes. Small, insignificant mistakes.
I’m not ready to talk about the next few years of my life. My hands are shaking, and I keep deleting the gibberish that I have managed to type. All I will say is this: my mental health got a lot worse, I received the right support for it, and it got a lot better. Right now I am on antidepressants, I haven’t self-harmed in one and a half years and I’ve finally accepted the fact that I have Asperger’s Syndrome. This acceptance has helped me to put things into perspective, allowing me to accept my issues and work with my strengths instead of against them. I still have rough days, but I’m happier than I ever thought was possible.
Be who you are. Accept who you are, and everything else will start to fall into place.
*Some names have now been amended to protect the anonymity of individuals*