A couple of weeks ago, Raves, myself, and our good friend Matt (aka, “The Fury”) were in the kitchen making some kind of an attempt at dinner (I don’t remember what, exactly, but it was probably a curry) when we found ourselves casually exploring how different the game “Prince of Persia” (the 2008 version for the PS3) would be if the main character had, like Raves, been diagnosed with Asperger Syndrome. Aside from the obvious exceptions of the Prince intently focusing on light seed collection, exploring every last crevice of the map, and being much more like a sarcastic teenager with an attitude problem (instead of just talking like one), we concluded the differences probably wouldn’t be all that great. When Raves referred to this alternate vision of the game as “Prince Asperger” he didn’t realise he’d given me both the title and topic for my next blog post; to be fair, it’s about time I addressed this subject because, if I’m honest, Raves often drives me absolutely fucking mental.
If you’ve never met, lived with, or had to otherwise deal with an “aspie” (as Raves, and other sufferers, sometimes refer to themselves), let me try to give you an idea of what it’s like. Imagine a teenage boy, let’s say about 15 years old. Now, before you imagine anything else you need to stop imagining that – seriously, pack it in or you’ll end up on a register! Instead of mentally flirting with an electronic ankle-tag, imagine this teenager is fairly typical for his age; stroppy, inflexible, socially inappropriate, and largely oblivious to the problems of others, while at the same time being an intelligent, “visual” thinker who, curiously, craves routine, and can sometimes be filled with enough Sylvia Plath and Joy Division (to quote Jeremy Hardy) to make Hamlet look like a whinging sod. If you’re a parent you’ll probably know exactly what this teenager is like because you’ll have had one of your own, but there’s one final thing I need you to imagine … that the little bastard never grows up.
In my experience, Asperger Syndrome is not as easy to spot as other autism spectrum disorders, largely because sufferers are not as prone to being so withdrawn around other people as an autistic would. They may seem awkward or uncomfortable in social situations but AS sufferers can, for the most part, approach other people just like anyone else, although this is not true for everyone (Raves, for example, exhibits common AS traits of mostly only talking to people he likes and remaining relatively mute around those he doesn’t know). The perceived lack of this particular barrier can result in someone with AS appearing, at least to most people, as being fairly neurotypical and free from any obvious psycho-social hindrances; that it is, of course, until they open their mouths to speak.
Anyone who has ever been involved in a conversation with someone suffering from AS will tell you that it’s more of a monologue than a conversation; sometimes, it borders on a being rally (only without the slightly unsettling feeling that you’ll one day be seeing it in old, grainy, black and white footage on the History Channel). Since AS sufferers have fairly narrow fields of interest within which they almost exclusively and repetitively operate, this means that, should you find yourself in a conversation with an aspie about his favourite subject, activity, hobby, or interest, strap in and brace yourself because it could be a very long and bumpy ride. The condition positively redefines the word “verbose” and you need to have a certain level of patience to get through it intact (especially when getting up to go to the toilet may often be misconstrued by the aspie as an attempt to flee).
Probably the most well-known aspect of AS is one it has in common with other autism spectrum disorders, notably that sufferers have immense difficulty showing empathy, dealing with social or emotional cues, and non-verbal communication in general. To the unaware, aspies risk coming across like insensitive, uncaring dicks with no regard whatsoever for the feelings of others, and this can so often contribute to the failure of many sufferers to establish durable friendships. It’s not easy knowing that your innate awkwardness makes it hard to make friends, and your neurological compulsion to seem like a rude and unsympathetic arsehole makes it even harder to keep them. I can, for example, count on the fingers of one hand the number of friends (not including family) that Raves can claim to have, and it’s not a case of not wanting friends – it’s just so damnably difficult when you have a condition that leaves you socially dysfunctional.
To give you some idea of how difficult it can get, Raves even once had trouble writing an email to a member of his family. He spent hours agonising about it before typing the first words (and days thinking about it before he got to the agonising stage of the process). Only once I had actually gone to bed, leaving him alone with the laptop, was he able to finish writing the email without feeling like I was exerting this unintentional pressure to get something done that the rest of us find so easy. He has often expressed the desire to reconnect with friends from his past that he has lost touch with and, to that end, I set him up on Facebook and asked one or two people I know (of whom he is aware and shares a number of common interests) to friend him – that way I could gently help him cope with the social world a bit more by using a social networking tool to act as a kind of firewall for reality. That was several months ago, and I’ve yet to get him to feel comfortable enough with even logging on.
I have to admit, to my shame, that my ignorance of Asperger Syndrome, and my subsequent inability to identify many of the things Raves says and does as being a product of his condition rather than a true reflection of his emotional opinion or feelings on something, has resulted in a lot of arguments. I have, for most of my life, been something of a borderline-OCD case, an overtly logical and often pragmatic person, as well as, if I’m brutally honest, someone who’s fundamentally a bit shit at dealing with the emotional stuff. I’m also prone to taking often trivial things (that aren’t very personal) very personally, especially, rather oddly, criticism that isn’t really criticism. In effect, while I correctly understand the difference between “imply” and “infer”, I often, to my and others’ detriment, end up inferring something that someone else didn’t imply.
With the above combination of potentially antagonistic traits reading more like the ingredients list for a psychological incendiary device, it probably won’t surprise you to learn that a small bit of innocent miscommunication (usually over something mind-fuckingly trivial) is all it takes to find that half of our evening has disappeared and we’re now shouting, swearing and crying at each other from opposite ends of the house. Much like a chimp with a Rubik’s Cube, we would be scrabbling desperately in vain to remember the correct combination of emotional moves we need to make in order to get all the colours back where they should be, without ever truly understanding each move or why it’s important. Is it any wonder that I ended up in counselling?
“Hold on a minute!”, you may exclaim (or at least you would if you were still reading and not just scrolling down for the final paragraph out of politeness), “shouldn’t that be we ended up in counselling?” No. You see, while Raves is about to begin counselling to help him cope with the social anxieties and stresses associated with his condition, if anyone needs to learn to deal with their emotions, it ain’t him – it’s me. Raves has a legitimate, medically-diagnosed reason for behaving like an emotional spastic – I don’t. In truth, I’m just fucking rubbish at being a proper human being half the time. So it was me, not Raves, who needed to learn to stop being a complete knob end because, at the end of the day, I’m supposed to be the adult in this situation.
It’s my job to go out every day to work. It’s my job to do whatever needs to be done to keep a roof over his head until, if ever, he’s in a position, psychologically, to cope with the day-to-day world of work and dealing with other people. It’s my job to help him organise his life and manage the endless stream of appointments and paperwork that are needed to keep his world ticking over. It’s my job to help him get to the doctors, the hospital, or the counsellor (although I couldn’t do any of that without the awesome help of his parents – thank you both, so much). It’s my job to be on top form all the time and to be the grown up, whether I want to or not … and it’s so fucking hard.
So often it can feel like being a single parent learning to look after a child you feel you can’t cope with; a child that frustrates the living hell out of you because they’re 29 years old and you can’t understand why they aren’t more like you. I can’t deny losing my patience sometimes whenever Raves proved incapable of doing things that seem so simple and natural to everyone else, just as I can’t deny how frustrated it makes me, and how bad I feel with myself, for making demands of someone that their condition renders impossible to fulfil. I’ve lost count of the number of times that I found myself thinking, “fuck this shit, I can’t do this any more” and wondering whether there’s a hedge on Dartmoor I could go live in for a while. But, in the end, I always know that I’m being unfair … it’s not fair on Raves, and it’s not fair on us that I should ever want to give up so easily like that.
It is, however, fair to say that things have gotten better (to a greater or lesser extent); it’s now possible, for example, to get Raves out of the house for doctor’s appointments, or to go shopping etc. without him vomiting for an hour beforehand. It’s also possible for him to be able to talk relatively freely with the staff at the various pet places we go to for aquarium and other important, fish or rat-related supplies. And, answering the phone during the day (when I’m at work and the caller could be some official-sounding person asking why my last credit card payment was late) no longer results in his desire to hide the phone in the fridge so that the ringing stops and the person at the other end can’t get in. He has even expressed an interest in returning to college which, given our financial situation, may not be possible right now but it is, at least, a desire he wouldn’t have had 3 years ago.
The hard fact is that, no matter how much we achieve, there will always be more to do, and there will only be so far we can get … AS is not something you cure; you can only learn to manage it. So, that’s what we do, every day. Yes, it frustrates me. Yes, it drives me up the fucking wall and back down again. Yes, I sometimes want to stick my head through the window and hope the rest of me follows shortly afterwards. But, no-one ever said it would be easy … and if they did, they were wrong, and I would have been a complete fool for believing them. So why would anyone put themselves through this shit if they didn’t have to? Why would anyone voluntarily remain in a situation that feels like their life, and any plans they might have had, are constantly being thwarted by a nerve-shredding, hair-tearing source of perpetual stress?
Isn’t it obvious? You do this for someone because you love them. Why else would you? You do it because you care about someone, because you can’t function properly unless you know they’re okay, and because you need something in your life to remind you that your problems aren’t everything. I love Raves – and that’s why I do it. I’ve never fully believed in the idea of love at first sight, or that there’s one perfect person out there for you – sure, I may have dallied with the notion when I was younger and more naive – but you learn through bitter experience that the highly romanticised, chocolate box, chick flick idea of love is, not to put too fine a point on it, total bollocks. It’s a lie we’ve all been quite willingly sold because it makes us feel fuzzy and warm inside.
The truth is, love doesn’t work like that. It grows … it builds over time as you find yourself developing a connection with someone, and is further strengthened by the experiences you share together. You might have had that bolt of lightning moment where you instantly fall in love with someone and want to be with them forever, and I wouldn’t dream of pissing on that … but you do know that it isn’t normal, right? For everyone else, it usually starts from nothing, and often comes from an entirely unpredictable place, and when you least expect it. When Raves first heard Tim Minchin’s song, “You Grew On Me” (in which the three words that follow are “like a tumour”), he asked if I felt that about him; if you know the song, you’ll know that answering “yes” is actually a good thing.
But it’s not just all about love, because it’s also about being challenged. If life is too easy, what’s the point? You need something to keep you occupied, a puzzle to solve, a mountain to climb, a “Britain’s Got Talent” producer to strangle and, for me, Raves is that challenge. He keeps me on my toes while making sure my toes, like the rest of my feet, stay very firmly on the ground. He stops me from acting like a self-pitying twat when things go wrong in my life by reminding me that, somehow, we can always figure a way to sort things out. And, if being challenged isn’t enough to keep me sane, he can at least find a way to bring the fun, and that’s even better.
When I left home to go to university (nearly 20 years ago, now), I was a much more ardent and avid gamer than I have been in the years since. I spent so much time using computers for work and for personal creative projects, I almost kind of forgot that they had another usage. That’s all changed over the last few years, with Raves practically manacling me to the PS3; I’ve played my way through the first two “Silent Hill” games, and am currently playing the third; I spent over 200 hours on “Fallout 3”, and am just starting out on “Fallout: New Vegas”; I recently completed “Prince of Persia”, just in time for Raves to get me utterly hooked on “Minecraft”. In the last week alone I’ve clocked up nearly 30 hours on the damn thing to the point where my wrist is fucking killing me from all that mouse-clicking (if ever there was a game for aspies, “Minecraft” is it).
Raves may very well send me utterly bonkers one day but, in the meantime, I get to look after someone I love and spend a good many hours feeling like I too am 15 again; playing games, watching some awesome movies, and eating crisps while the world goes on around us. Yes, it’s just a temporary escape, a way for me to unwind after a long day, but it helps balance life out and makes the tough times a lot easier to cope with.
Historically, the one thing every king wanted was a prince. Well, I am a King (yes, okay, it’s just my surname – shut up and go with it) and I’m happy to say that I’ve got myself a difficult, yet never boring, prince who keeps my life interesting. Even more so now that we’re building an epic castle in “Minecraft” …