To many of you who know me, reading this article may come as a bit of a surprise. Asperger’s Syndrome is never something I’ve felt particularly comfortable talking about; in fact, it’s always been something I’ve been more interested in avoiding wherever possible. Even now, as a 27-year-old who functions ‘normally’ in society (however you choose to define what that means), I’ll be honest when I say that Asperger’s still feels somehow like a blemish I’d rather be without.
As a young child, my life was pretty good. My mum gave us everything we needed, I had a great brother who was also my best friend, and I went to a small primary school with only 3 classrooms and around 50 students. I was fascinated by maps, the planets and our solar system, and also loved putting together model aircraft. From today’s perspective, I also had some pretty bizarre obsessions (ranging from light switches to toilets and then churches, which I forced my parents to take me to, my disinterested brother in tow) – but to 6 or 7-year-old me, these just seemed like normal interests, nothing to be thought of as weird or somehow different from what any other child might be interested in.
What had always seemed weird to my smaller self though, were other people – especially those the same age as I was. One of the main characteristics of Asperger’s Syndrome is a difficulty in understanding and relating to others and in forming friendships. At primary school I often preferred to be alone, left to my own devices to explore the world or play games in my own head. I looked at other children talking, playing and running around together as if they were aliens from another planet. It’s not that I didn’t want to do what they were doing, or have what they had – indeed, I very much wanted to form friendships and feel connected, I just didn’t know how to.
Another feature of Asperger’s is a tendency to take everything you hear very literally, and to be honest to a fault. I remember an incident at primary school where I’d agreed to trade one of my very best Pokémon cards, a shiny Alakazam no less, with another kid. He’d told me he had this amazing card and would bring it with him to school the following morning, so long as I brought in mine. And I did – only the following day he claimed he’d forgotten his card at home, and would bring it in the day after. The day after was exactly the same, however, as was the day after that. I still completely believed him when he said he definitely had the card. Eventually he broke, likely annoyed or brought to guilt by me constantly asking him. He looked me in the eye and said he didn’t have the card. What do you mean you don’t have the card? I thought he’d just forgotten it again. He went on to clarify that he’d never had it, that he’d made it all up because he wanted my Alakazam. I was so shocked and saddened by this that I almost couldn’t believe it. How could somebody lie like that? I wasn’t even able to understand white lies, let alone lies that had absolutely no purpose other than to hurt and mislead. From then on I had a little voice in my head saying, ‘trusting people is dangerous.’
When I first began to sense that something might be ‘wrong’ with me, so to speak, was when a woman other than our main teacher started to appear on a regular basis in my school classroom. At first it was let on that she was there to assist anyone who may have needed her help, for example those struggling with schoolwork. However, it soon became obvious that she was spending far more time with me than she was with anyone else. It was soon after this that my mum asked to speak with me alone in the living room one day after coming home from school.
For a long time I blamed my mother for doing what she did that day. I like to think there are a few ways one could react to being told they have Asperger’s Syndrome at the age of eight; let’s just say mine wasn’t the most positive of these. It seemed that she initially just wanted to explain why this new woman had suddenly shown up and was so focused on me, which I was pleased about – only the reason why didn’t please me at all. “Do you have it too?” I remember asking, only to be met with a shake of the head. “What about Jack?” I queried, desperate for the comfort that at least my own brother was in the same boat as me. Also a no. “Anyone else I know?” I then asked, my last throw of the dice. Another no.
When I did a course called the Landmark Forum a few years ago, I really began to see just how pivotal a moment in my life this day was. We all have key events in our childhoods when we decided something about ourselves, for better or for worse. Some of you may have been laughed at in school for getting the answer wrong when you put your hand up, only to decide you were clearly stupid. Some of you might have been hit or emotionally abused and decided you were unlovable. For others, achievements like passing a test might have led to more life-affirming decisions. Needless to say, the decision I made about myself after being told I had Asperger’s wasn’t particularly pretty – I was clearly an outcast, a freak, someone who would never fit in or be considered normal in society. I even remember my dad telling me about a conversation he’d had with one of the doctors who diagnosed me, in which he said it was unlikely I’d ever have any friends, let alone a girlfriend. When all I wanted was to fit in and be ‘normal,’ this hit me pretty hard.
I remember actually starting to hate myself shortly after this. It’s also, funnily enough, when I started needing to wear glasses, something that definitely helped me to feel better about myself! I began to rebel against the support teacher, started deliberately dumbing myself down (18/20 on a spelling test was almost unthinkable back then!) and started acting out both at home and school, simply in order to appear more like everyone else and less like a special case.
Starting secondary school at the age of eleven only made things worse. I went from a small, cosy school of 50 students to a 1970s concrete jungle of a campus with around 750 students in it. Needless to say I felt completely overwhelmed, and cried pretty much every day for the first three weeks of going there. I was over my previous obsessions by then and was better at socialising, but still felt the acute pain of not fitting in and struggling to make friends.
I’ve always been a very sensitive person, which didn’t exactly help much as someone almost constantly aware of how I looked and acted around others. As school went on, I decided that the best way to avoid being mocked or noticed for how different I was, was to adopt a ‘mature’ persona that generally tried not to stand out as much as possible. I also decided that I was clearly safer spending time alone, and so found myself retreating more and more into myself during secondary school. I was very socially anxious and had low self-esteem. It wasn’t all doom and gloom, though – my academic performance was good throughout school, and it’s thanks to this that I now speak Russian fluently – and don’t consider myself too bad at English either! I never saw these as pros at school though – more on that later.
Talking of Russian, I had my first crush at the age of seventeen whilst on a school language exchange in Moscow. It was wonderful, the feeling of being so wildly hooked on someone (especially as the feelings seemed to be mutual), and it was great while it lasted – which in reality, was approximately ten days. The problem for me was that in my head, this all lasted a hell of a lot more than just ten days. I can now safely say that I became obsessed with this woman; not like a stalker or anything, but in my mind I simply refused to let go of the fact that we weren’t together, even when it was plainly evident that she had long since moved on. Obsessions are, if you haven’t yet noticed, another key feature of Asperger’s, and this obsession was with the feeling – more than anything else – of being in love. It almost got to the point where I convinced myself I had a girlfriend, when I very clearly didn’t. A couple of years later, after a stint of living and working in Russia, I finally let this go.
Back in the UK, I decided I wanted to go to university – not because I necessarily had the urge to study, which would have been a good reason, but because I wanted to ‘fix’ my almost non-existent social life, and hopefully even find a girlfriend. I’d applied to Cambridge to study Russian with Arabic a few years prior, and so decided to apply to do Arabic at SOAS in London. What better place than London, I thought, to enrich my social life and have some fun? If going to university didn’t sort me out, I didn’t know what else would.
It turns out going to uni simply to ‘fix’ an aspect of my life wasn’t really the best decision I’d ever made. I made some great friends there, true, but besides that I chose the wrong course, and more importantly, the wrong university. Living in London, a city where people abound but real connection is often missing, only made me feel even lonelier. Not wanting to spend a year in Egypt and continue doing a course I no longer enjoyed, I dropped out of university and moved back in with my mum. I had some new friends, but the pervasive feeling of loneliness that had accompanied me almost my entire life had gone nowhere. Instead, I was simply tens of thousands of pounds in debt to the government for a course I didn’t even finish.
I was 23 then, and excited about earning some of my own money. Yet reality soon set in – I had no tangible qualifications, apart one in teaching English, and all I’ve been doing the past few years (apart from self-publish a book, I should say) is working low-paid retail jobs. I’ve met many people since then, but very few have stayed in my life. This, of course, apart from a wonderful woman I met over two years ago whilst I was working in a perfume shop in Brighton. We connected almost instantly, got into a long-distance relationship shortly after and have been living together now for almost a year. On the romantic front things couldn’t honestly be much better! I wouldn’t be human either if I also didn’t feel just the slightest bit smug at having proven that stupid doctor wrong.
As far as Asperger’s goes, I consider myself to be one of the luckier ones. I successfully learnt how to actually socialise and relate to people whilst at school and in my late teens, to the extent where I now feel I can talk with pretty much anyone and not be suspected of being ‘on the spectrum.’ I consider this largely down to my early ‘training’ as a child, where my parents would tell me, in gentle terms, what was considered ‘normal,’ and the fact that I was able to take this on. This went along with my keen sense of observation and almost excessive willingness to fit in and be like everyone else as a teenager and young adult. I’ve also come to see certain aspects of Asperger’s as a strength – my excellent memory and ease of learning new subjects, for example, recently helped me to become almost fluent in German in six months. Becoming easily obsessed with things can also help with maintaining focus and motivation to get stuff done.
However, becoming ‘normal’ has come at somewhat of a price. Sure, I’ve succeeded in achieving what my eight-year-old self so badly craved, but I can’t help but feel I’ve disconnected with a part of myself in the process. Being so constantly hypervigilant about fitting in and not being ridiculed led me to suppress certain aspects of my personality, particularly the more creative or silly aspects of myself that might cause me to stand out. I’m also ever faced with the question of what ‘normal’ really is. Who decides what the standard of normality in a person is? And if the whole world became as obsessed as I was about conforming to such norms, wouldn’t this be a pretty dull place to live?
I think slowly but surely, I’m coming more to accept myself for who I truly am. And yes, that is someone with Asperger’s, who still gets obsessed with things, who still sometimes lacks empathy and speaks without thinking beforehand. That is someone who isn’t ‘normal’ – because who really is? We all have our own unique talents and gifts, and it seems a bit of a waste of a life to spend it constantly comparing yourself with others. The overarching lesson I’ve learnt so far from all of this is the paramount importance of self-love and acceptance, regardless of whether you’re on the spectrum or not. The stories I made up about myself after finding out about my condition led me to hate and despise myself, to think I was somehow unworthy of love and all the good things the world has to offer, but the reality is this was all just make-believe in my head. With a bit more love, acceptance and patience for ourselves, we can all be happier, more peaceful and lead more fulfilling lives.
And lastly if you, or someone you know, has Asperger’s, please don’t think of this as something ‘wrong’ or something that needs to be fixed. You can still live a completely happy, healthy, great life with Asperger’s, and it’s important we remember that.