The Hidden Village of Aspergers

March 1, 2014

If It’s Real

Filed under: introduction,Uncategorized — kankurette @ 7:38 pm
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And if I say the wrong words
every now and then I said you wrap me up in chains
I said you wrap me up in chains
And if I say I need some space
every now and then I said you crucify my soul

Let’s get this out of the way: yes, I do have Asperger’s Syndrome.

No, I am not faking it to sound different. I did not do a test on the internet and decide I must have Asperger’s after getting a high score. I do have it. I was diagnosed with it at the age of ten after my dad died, I started acting up in class, and my mum took me to see a speech therapist. I was diagnosed by a different doctor in my teens, though I forget exactly when. My mum probably has the paperwork somewhere. I may have done a degree in languages instead of a STEM subject (I wrote a while ago about the idiot doctor who told me I couldn’t possibly be on the spectrum because I was doing an arts degree), I may not be into stereotypical Aspie stuff like Pokemon cards or volcanoes or trains or Doctor Who (though I do like some of the series), and on the surface, I don’t look too much like a stereotypical geek / nerd, except for my glasses (crap eyesight runs in the family). My voice isn’t the monotone it used to be, though I do have a bizarre hybrid accent.

I’ve come to self-define as disabled. Let me explain why.

I am not visibly disabled. I have no cane, no hearing aid, no service dog, no crutches, no wheelchair. If you looked at me, you would see a short, overweight woman with bad skin, unruly dark hair, a nose ring, an iPod, usually wearing Doctor Martens, a long skirt, a dark coat with a button missing. But if you spent more time around me, you might notice little things that seem off. Talking incessantly about things that might bore the pants off people. Being unsettled by little changes, such as my bus being late. Visibly wincing at loud noises, screaming babies, yelling bouncers, people with harsh voices, people shouting across the room at work. Poor eye contact. A dislike of being touched by strangers. Scratching my face and back without really being aware I’m doing it. And, of course, the meltdowns, the crying fits, the hyperventilating and handwringing when things get too much.

Asperger’s Syndrome, combined with depression and anxiety, does prevent me from doing things a lot of people take for granted, and makes social situations a minefield. Talking to clients on the phone at work? Forget it. They took me off phones after one too many panic attacks. Small talk? I can’t do it. I can’t pretend to care about people who I don’t care about. Crowds? Ugh. No. Airports? Hell on earth. Tidying my house and making sure to tell the council I’ve moved and regularly sorting out things such as my dodgy light in my kitchen? It just doesn’t occur to me. Job interviews? Where do I even begin? Bigging myself up on an application form? I’m more likely to tell you why you shouldn’t hire me. Office banter? I can’t tell if it’s a joke or not and I don’t know when to laugh. Then there’s the stress. Oh, the stress. People tell me I need to relax and stop worrying, but it’s easier said than done. I stress out over little things, and the stress makes me tired, and when I get home from a shift I just want to go online, eat, have a bath, sleep. If I did not have any mental health problems, I daresay I would probably be in a higher-earning job, a cleaner house, I might even have a partner, I’d definitely have more friends and a better social life and I’d still be going to synagogue and I wouldn’t get a horrible feeling in the pit of my stomach at Space gigs. Nor would I be sitting on my auntie’s sofa crying because I feel like a failure – at nearly 30, I haven’t done half as much as my neurotypical friends have. They get married, have kids and move on, while I’m stuck in Manchester, in a dead end job, wanting to get out but trapped by my fear of change.

To be honest, I don’t think the social model of disability really helps me either. Sure, it’s great when people understand instead of just laughing or looking at me like I’ve just bitten the head off a kitten, but even when there are people like my mum, my stepdad, my friends, understanding therapists and counsellors and disability support workers, people who have daughters or sisters or friends with Asperger’s Syndrome, and so on who do understand, it only makes things better to an extent. It doesn’t stop panic attacks or hypervigilance or being on edge when something is off or shyness or running out of parties due to panic attacks. I’m lucky in that I can make enough adjustments and try to change, although it’s a slow process, in this breakneck, dog-eat-dog world. A lot of people on the spectrum can’t. Kindness and understanding can and do help, but they don’t make the Asperger’s Syndrome go away. It’s there and it will always be there and I am stuck with it until I die. So the best I can do is try to live with it, and try and whittle my corners away as much as I can so I can fit myself into the round hole – but no-one ever said it would be easy. It isn’t.

June 7, 2010

Life in the Hidden Village

Filed under: introduction — kankurette @ 6:45 pm

When I mention I have Aspergers Syndrome, one of the questions I often get asked is, “What does it entail? What are the symptoms? What’s it like having Aspergers Syndrome?” Thankfully, no-one’s mentioned Rain Man. Yet.

More and more people are aware of Aspergers Syndrome than was the case back in 1994. More people are being diagnosed, and Aspergers is making its way into popular culture. We’ve had The Curious Incident of the Dog in the Night Time. We’ve had Adam, which – from what I’ve heard – was an incredibly moving and true-to-life portrayal of a young man with Aspergers. (Memo to self: rent movie.) We’ve had Jerry Espenson in Boston Legal, Sheldon Cooper in The Big Bang Theory and – hurrah, a female character! – Karla Bentham in Waterloo Road. We’ve had Naruto fans discussing whether the character Sai has Aspergers, on account of his lack of tact and social skills, and inability to deal with emotion (I think it’s because of his ninja training, myself, but I digress). We’ve had Craig Nicholls of the Vines and Pip ‘Ladyhawke’ Brown coming out as people with AS. My mum will phone me up and mention there was a programme on Radio 4 about Aspergers Syndrome. And so on.

I’m beyond happy that we have increased visibility. The more people know about us and our condition, the more realistically we’re portrayed on TV and in books and movies, and the more people ‘come out’, the more accepted we will be, and hopefully, the more people in general will understand the condition. However, not everyone knows exactly what Aspergers Syndrome entails, so I’ll summarise.

It is not just social awkwardness or lack of social skills. It is not another form of OCD. It is not being a little bit eccentric, a bit of a loner. It is not just shyness. And no, not all of us have mad counting skills. There are some AS and autistic savants, but there are also a lot of people on the spectrum like me who are, well, ordinary. I did do well at school, but I’m not a genius – I just worked hard. And I hated maths and preferred languages (though some people do think maths is a language, so maybe there’s some connection there).

Since this blog is called the Hidden Village of Aspergers, I’ll use a metaphor. Bear in mind that what I’m saying is very generalised – Aspergers comes in all varieties, to the people on the extreme end like Christopher in The Curious Incident…, to people like me, to people who are right on the borderline.

In the Hidden Village of Aspergers, the people live by a strict timetable. You get up at 7 o’clock, have a shower at quarter past 7, then a breakfast at half past 7, then organised activities. Lunch is bang on midday. Then you have more organised activities, then dinner at 6 o’clock, culminating in bedtime at a designated time. They must adhere to these times. If anyone does anything off-schedule, people will get nervous. They don’t like it. It makes them uneasy.

‘A place for everything and everything in its place’ is one of the Village’s favourite sayings. These people do not like you moving their stuff, and that’s an understatement. Relocating workplaces or homes just isn’t done here. The thought of moving to a strange and unfamiliar place frightens them. They do not want to go beyond the borders to which they’ve become accustomed. Their parents, grandparents, ancestors have always lived here, and so will they, and their children, and their grandchildren and other descendants.

The people like hobbies and collecting things; everyone has their own interest. Dinosaurs. Trains. Military history. Pretty seashells. Transformers. Their five kittens, named after the Sailor Senshi. Metal Gear Solid. You get the idea. Like Adrian Mole and the Norwegian leather industry, they can bang on about the interests for literally hours, perhaps not realising that the person they’re talking to couldn’t give a flying’s rat’s bollock unless they come straight out and say, “Look, hun, I couldn’t give a flying rat’s bollock about your collection of Sylvanian Families.”

There are no lies, no mind games, no passive-aggressiveness, and no subtle manipulations. People speak as they find; they say what they mean and mean what they say. Tact is some kind of weird foreign concept. They can be inadvertently offensive, but may not notice. They’re bloody awful at making small talk; they don’t care about the weather or what you did over the weekend, and see no point in asking you about it. They like to talk about themselves. Sometimes they socialise, but in general they’re a suspicious lot. They can’t read each other’s faces and body language and tone, and they don’t always look you in the eye – not because they’re rude, because it just doesn’t occur to them. Some of them speak in a monotone, or quickly. You’re always on the edge, not being sure how to react to another person, not knowing what they’re implying.

They are not rude or cruel. Thoughtless, maybe, but it genuinely does not occur to them that what they are saying and doing might hurt others. Of course, some of them do realise that they’re Doing It Wrong, but not all.

They bump into each other and trip over things. They walk with their hands in their pockets, their shoulders slumped. Some of them can’t dance or play sport. They have a sense of humour, but it does not involve sarcasm or subtlety. Loud noises and bright lights terrify them. What might seem a minor annoyance to an outsider is, to a citizen of the Village, nightmarish, and akin to making a dog watch bottle rockets going off. They find parties difficult. They can form relationships, sometimes with outsiders, but don’t always know how to make the relationship work. They may be mistaken for unfeeling and cold, but that’s not true at all. These people are not robots. They can love. But strong emotions of any kind can overwhelm and confuse them. They can read many things in books and learn facts, but no book can entirely teach them how to deal with their own feelings. It takes more, much more.

Other Hidden Villages might find the people of the Hidden Village of Aspergers weird, antisocial, psychotic, clumsy, crude, stupid, cold. They isolate the Village and sometimes talk of declaring war on it, but then decide it’s better to leave the people to each other’s mercies. Some villages will try to make contact and build relations; sometimes they will succeed. But the Hidden Village of Aspergers is a bizarre kind of place indeed for an outsider. Better be careful. Take this map, and also this kitten. You could get lost in there.

May 18, 2010

The obligatory introduction

Filed under: introduction — kankurette @ 9:43 pm

Well, here we go. I hate doing this bit, but it’s only fair readers should know what they’re getting into.

First, I’d better explain the name. People with Aspergers have a reputation for obsessing over stuff, such as volcanoes or Harry Potter or, I don’t know, spoons or something. Obsessions I’ve had in the past include: Sonic the Hedgehog, Asterix, buttons, the band Space, and people who I will not name. One of my current obsessions is a manga called Naruto. It’s somewhat of a guilty pleasure as it’s a shounen manga, i.e. aimed at pre-teen and teenage boys, but it’s also popular with older fans. It’s based in a village called Konohagakure, which means ‘village hidden in the leaf’, and which is responsible for producing ninja, including the title character. Hence the name of this blog. I was going to call it Aspiegrrl, but that title’s already been taken. It’s also where I got the name ‘Kankurette’, a feminised version of my favourite character’s name.

There are two things that inspired me to write this blog.

Firstly, I was inspired by an article in the Guardian in 2009 about how more and more women are being diagnosed with Aspergers Sydrome – and yet, it’s always been the case that fewer of us have been diagnosed with it than men because of the way women are socialised. We’re told to keep our heads down, to not make a fuss, to fit in and be ‘good girls’. We suffer from peer pressure. We cannot be too thin, too fat, too tall, too short, too clever or too stupid. We must wear the right clothes, listen to the right music, have the right hobbies, the right image, the right sexuality. Deviate? Well, as I found out the hard way, you’re screwed. Having Aspergers Syndrome, a condition which affects the social skills you so desperately need when you’re a teenage girl – indeed, that you generally need as a human – really does not help.

Secondly, I came across a website that had stories written by people about their experiences with Asperger’s, and me being into writing (and a bit of a closet attention whore), I thought, “Hey, maybe I should write something for this.” So I did, and you can read it here. I thought nothing of it at the time, but what I didn’t really consider was how people would react. I received a good few emails from people with Aspergers thanking me, telling me how much me sharing my story had helped them. One that particularly touched me was from a teenage girl called Abi who also has Aspergers. I won’t share it here as I respect her privacy, but reading it really brought it home just how much writing can help.

That said, I don’t really know what I want to achieve by writing this. Maybe it’ll become clear in time. I do know that there are other Abis out there, and if I can help them in any way, then that would be pretty awesome. I also, I suppose, want to look at the relationship between Aspergers and gender and socialisation and all that jazz. Maybe one day I’ll talk about it at a NAS conference or something.

(By the way, this is not an academic blog. It is not a project. I won’t be interviewing people or anything like that. However, I do have a friend of a friend whose daughter has Aspergers, and who is interested in women with Aspergers, so hopefully this blog will help her.)

Other things about me: I also suffer from depression (which runs in my mum’s side of the family) and Chronic Fatigue Syndrome, the latter caused by a particularly nasty incidence of flu in the summer of 2009. It may or may not have been swine flu. The depression and the Aspergers are intertwined at times; they feed off one another, so to speak. Sometimes the symptoms overlap and you can’t always tell which is which. I am bisexual. I have a BA in German and Spanish and an MA in Translation Studies, both from the University of Manchester. My best friend is from Belize and likes drawing birds and insects. My favourite band are the Pogues. My favourite colour is green. I look a bit like a cross between a Staffordshire Bull Terrier and Alan from Modern Toss, and I’ve been compared to Eeyore and Marvin the Paranoid Android.

I come from a loving, eccentric and close-knit family. Dad’s side are Scottish; Mum’s side are apparently Jewish. My mum works in the cafe at M&S in Chester, and spent a lot of my childhood raising us alone as my dad was in and out of hospital. We had a very up-and-down relationship when I was a teenager, and it took her a while to come to terms with me having Aspergers, but we’re a lot closer now, thank G-d. From her, I inherited migraines, neuroses, feminism, being crap at sport, and music taste.

My dad was a journalist, activist and one of my heroes, and died in 1993. I like to think I get my writing abilities from him, and also my love of language, although I’ve also inherited bad skin, migraines, and a tendency to put on weight. And a dislike of porridge, which is pretty ironic as my dad was Scottish.

I also have a younger brother who is 24 and doing a Masters in something music-related at Goldsmiths. We also had a pretty turbulent relationship when we were kids, and that’s putting it mildly, but again, we’ve become much closer over the past few years. The fact we don’t live together really helps now.

I should note that there will be a lot of swearing. Apologies. There will also be some content which is potentially triggering or painful to read. I self-harm, although thankfully not as much as I used to, and I have had a lot of issues with eating in the past, not helped by anti-depressant-related weight gain.

So there you go.

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