The Hidden Village of Aspergers

March 15, 2014

I Am Unlike A Lifeform You’ve Ever Met

Filed under: books,childhood — kankurette @ 11:36 am
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I’m a midnight creeper, an all-day sleeper
Waiting for the night, I feel I’m gonna meet her

“Books,” my mum once said, “are like food to Lotte.” She wasn’t kidding.

One of my biggest pet peeves regarding misconceptions of people with Aspergers is the idea that we don’t have an imagination. We do. Just because I am very literal does not mean I don’t have an imagination. I can’t speak for all people on the spectrum, everyone’s experience is different, but I definitely remember writing stories, creating characters and worlds, and playing dress-up and other imaginary games with Jack or my friends. I remember us both being obsessed with the Disney version of Robin Hood, and playing games where he’d be Robin and I’d be Maid Marian. We’d also play at Thunderbirds, or being Top of the Pops presenters, and we wrote a fanfic together on my dad’s old typewriter, about the Famous Five. Sadly, it was lost years ago, but I do remember the word ‘vagabond’ was used a lot, Julian’s catchphrase was ‘I know, I know’ and variants thereof, and they ended up eating Timmy. In school and at home, I wrote poetry and stories. I drew pictures. I invented characters – my most notorious one was Mike Mushroom, an anthropomorphic mushroom who I drew on all my books at school and my desk. Mum thought it was something to do with Dad dying. Maybe it was, I don’t know. Like a lot of kids with Aspergers, I was obsessed with Sonic the Hedgehog (although I grew out of it once I grew out of gaming) and Thomas the Tank Engine, and I used to draw pictures of Sonic and Tails on my books. I also had imaginary pets – an entire menagerie – as Mum and Dad wouldn’t let us have a cat. I definitely remember having two dogs called Anne Albertine and Claire Beetroot. Again, I have no idea where these names came from.

Then, of course, there were books.

Franny & Zooey. The Very Hungry Caterpillar (there is a tape of me, aged two, reading it aloud). The Lost Continent. Mrs Pig’s Bulk Buy. Jill Investigates. The Chalet School and Nancy Drew books. The Women’s Room. Is It Just Me, Or Is Everything Shit? Ladder Of Years. Paul Jennings’ short stories. All these are books I’ve loved, and read and re-read until the spines cracked and pages came loose. Some people find the idea of re-reading books weird, but for me, it’s a mixture of familiarity and the fact that I pick up on things I may have missed the first time around. My house is full of the damn things. There are books piled up on the bookshelves in my kitchen and my living room, on the windowsills in my bedroom, in a basket in the toilet (I read on the toilet and in the bath), on my chest of drawers. Some are presents, some are from charity shops, some are nicked off my parents. When I’m on holiday or going to gigs out of town, I take books with me. I can remember taking Linda Goodman’s Love Signs to Space’s Leeds gig, When We Were Bad by Charlotte Mendelsohn to their St Helens gig, Sue Townsend’s Rebuilding Coventry to Hebden Bridge in the summer, and Margaret Atwood’s The Edible Woman to Birmingham in October. In Germany in 2012, I slogged through Moby-Dick, and Tori Amos’ Piece By Piece kept me company in between watching bands at Primavera Sound last year. One time, while visiting Jack in London, Mum left me in Foyle’s, and I could have happily spent the day there. As a kid, I gave zero fucks about clothes shopping; it was bookshops, and later music shops, that got me interested. Also, and I know this is a massive cliche, I love the smell of old books. I think it has something to do with being sensitive to smells. (I’m not one of those people who’s anti-Kindle, by the way. I think Kindle is a great idea, though not for everyone.) Both my parents are/were readers, as is my stepdad, whose book collection makes mine look miniscule (sometimes I worry about taking books off his bookshelves in case a pile of books falls on my head and brains me). There is a photo of me as a toddler pulling books off a shelf. Apparently I did this a lot. My parents also learned the hard way that I would read anything, including things that weren’t suitable for a little kid. The awkward moment when you’ve read Lern Yerself Scouse and you sing ‘get plasterd, yew basterd’ on your dad’s birthday, and wonder why your family are staring at you…

I have never been much of a TV person. Depriving me of TV was never a good punishment for me because I would just read instead. Maybe it’s because TV has the sights and sounds all laid out, whereas with books, you only have words to rely on, but words can paint pictures of their own. I like getting lost in a book and imagining what the characters look like and being sucked into their worlds – Panem, Ankh-Morpork, the Tiern See, the America of Brave New World, O Henry’s New York and Wild West, Hogwarts, the Glass family’s living room. When I was having a bad time at school, books were my comfort. They may not have taught me how to interact with people – though The Women’s Room changed the way I saw the world – but they took my mind off the bullying and the loneliness. Like Space, they were my escape route. Like Anne of Green Gables, one of my favourite fictional characters as a kid, my imagination was one of the greatest weapons in my arsenal.

March 11, 2014

The Man

Who’s the man with the plan?
Who’s the man?
I am!

A comic has been doing the rounds on Tumblr recently, wherein the artist suggests that one should turn one’s hobby into a job. Like knitting? Start a yarn shop! Follow your dreams! Except it’s not that simple. Not all of us have business savvy or connections or facilities or what have you, not to mention the failure rate of start-up businesses. At the end of the day, most of us end up in jobs that are nothing more than a means to an end. My current job is, for instance. It’s not what I imagined myself doing, but it’s what I have to do in order to keep a roof over my head and the bills paid.

The workplace, for some of us, is high school all over again. You’re still being told what to do by an authority figure, you’re expected to conform to a dress code (in some jobs, mind), and on a personal level, there are the same cliques and politics. Backstabbing and bitchiness are not limited to the playground. Office politics is always something I try not to get too involved in. I just want to go to work and do my job and go home. I don’t want to listen to other people’s problems when I’m busy. I tend to go into some kind of weird trance when I’m typing, especially if it’s an interesting case and the fee earner’s voice isn’t too hard on the ears (I had a colleague whose voice made me physically ill. I’m not kidding. She sounded like a Dalek.)

As I’m pretty knackered, I’m going to do this post in list form. These are some things to consider if you’re working with a person with Aspergers Syndrome.

– Open plan offices are hell on earth and one of the worst types of working habitat for someone with Aspergers. I work in one. The combination of the phone, the fax machine-cum-printer, colleagues shouting across the office or talking loudly or dictating and my own work is enough to drive me batshit, and it sometimes does. When the fee earner next to me dictates, I down tools because I cannot concentrate while she’s talking. I find it hard to tune background noise out. It’s also why I listen to an iPod on the bus, because it blocks out the background noise.

– On that note, do not talk to us while we’re on the phone, as we cannot process two people talking at once. Asking who it is is one thing, but continually asking me to tell the person something while I am in the middle of a conversation is another and it makes me wonder if I should just put the phone through to you.

– Ah, the phone. Putting us on Reception, or any other kind of telephone job, is not always a good idea. Sensory overload aside, answering the telephone to strangers can be a major source of anxiety, especially when they’re angry and you can’t help them. I got banned from answering the phone at work after one panic attack too many.

– We don’t always get office banter. We do actually have a sense of humour – it just might not be the same as yours. We can take things a bit personally. I don’t mind banter when it’s with friends, my best friend and I take the piss out of each other all the time, but not so much when it’s people I don’t know. We can’t always tell when you’re joking or if you really are angry, and we can’t understand why you’re making such a big deal out of us asking for 50p out of petty cash. It’s really not that funny.

– Always, always, ALWAYS give us clear instructions. Do not be surprised if we ask a lot of questions on how to do something. It’s not because we’re stupid, we just want to do the job right. Also, be specific. Make sure we have job specifications – I didn’t for a long time, and found myself doing other people’s jobs. Let us know what our duties are.

– Do not shift the goalposts. I mean it. A lot of goalpost-shifting happens at my job and it throws me off completely when I’m told to do one thing, and then told not to do it. We like to know where we are and hate being confused. Constantly changing rules is a very bad idea if you’ve got someone with Aspergers working for you.

– We are not mind readers. Do not assume we know everything that is going on. We need to be kept in the loop. Some of my colleagues are very guilty of this, not telling admin staff about court dates and then getting angry because they don’t get put in the diary. We cannot put things in the office diary if you do not tell us. I also got blamed for not putting times on attendance notes, and was very angry about this as I make damn sure I put the times on, and if I don’t get them, I chase them. Luckily, in that instance, my boss took my side. My boss,  I have to say, has been great, although I think it helps that we work in different offices and the London staff don’t have to see my meltdowns.

– Do not patronise us. Just because I have Aspergers does not mean I am four years old, thank you very much.

– If you are angry with us, do not shout at us. It makes us panicky. Try and keep your temper.

As an aside: I’m going to recommend another book I was given recently, Asperger Syndrome and Employment” What People with Asperger Syndrome Really Really Want. It’s by Sarah Hendrickx, who runs a support service called ASpire, based in Brighton. My only beef with it is the lack of female representation, compared to the many men who were quoted, but other than that, it’s well worth a read.

August 24, 2010

Rudy Simone is made of win

Filed under: books,childhood,stuff what i have read — kankurette @ 7:59 pm

Last Monday, August 16th, the Telegraph featured an article on women with Aspergers Syndrome entitled ‘Help at last for the “Aspergirls”‘. Notwithstanding the fact that I wish I’d invented the term myself (I love puns like dogs love humping your leg), I was extremely happy to discover that at long last, there’s a book out there focusing on women with Aspergers. It’s called Aspergirls: Empowering Women with Aspergers Syndrome. It’s by a woman called Rudy Simone, who unsurprisingly has Aspergers Syndrome, and apparently you can order it through the Telegraph website, and with any luck it’ll be on Amazon.

According to the article, the National Autistic Society states that women are far less likely to be affected by Aspergers than men – over four times less, to be exact. And yet, in the same article, out of every five people on the autistic spectrum, Aspergers included, one will be a woman. But not everyone with Aspergers is correctly diagnosed. Another woman with Aspergers interviewed for the article, Sarah, states she was originally thought to be schizophrenic, and wasn’t diagnosed until she was twenty-six. I wonder myself how long it would have taken for me to be diagnosed if my dad hadn’t died and I hadn’t started acting up and worrying my family and primary school. I probably would have been thought of merely as just another weirdo, an eccentric loner, no justification or reason needed.

Simone, like me, wants to challenge the old misconception of Aspergers as a ‘male condition’, and to suggest how it might manifest itself in women and how we and the people around us can deal with it. She has a partner and a teenage child, proof once again that people with Aspergers can – like, ohmagawd – actually have families and lead ‘normal’ lives, rather than spending our entire lives in our mothers’ basements playing World of Warcraft and playing with string or whatever it is people think we do. (My mother doesn’t have a basement anyway, but that’s beside the point.) Sarah, meanwhile, is married and is working for BT, thanks to Prospects, a service provided via the NAS which helps people on the spectrum find jobs. I made use of it myself when I was at university.

Simone and Sarah’s stories struck a chord with me because both had similar childhoods and experiences to my own. Sarah admits to having been terrible at sport and badly co-ordinated, and used music as a means of escape. Simone, meanwhile, has habits which I recognise all too clearly as my own; re-reading the same books – something my mother has never understood, since you know what happens – and listening to the same songs again and again, just like me. Even now, on my iPod, I have certain tunes which I listen to again and again and never get tired of, although I admit having album fatigue after listening to Space’s Tin Planet, an album which admittedly hasn’t aged well but which I loved when I was halfway through high school, one too many times. Both women were bright as children; Sarah was even given an unconditional place to study music at Goldsmiths, but dropped out after one year.  Simone is also very sensitive to certain smells and textures, and I still remember as a teenager nearly throwing up after accidentally inhaling the stench of my stepdad’s rancid old dog’s basket, and disliking clothes made of wool because it itched me something rotten.

When I read something like this, it’s hard not to immediately start jumping up and down and shouting, “Me too! Me too!” It’s like discovering someone ships the same weird pairing as you, gets a nerdy cultural reference you make, or was at the same Rammstein gig at the Manchester Apollo in 2002 when American Head Charge and Raging Speedhorn were supporting, and Till Lindemann pretended to buttfuck the keyboard player with a fake dildo and squirted fake jizz over the front row. (Yes, I have met a good few people who were at that gig.) Knowing that there are people out there who grew up with the same quirks, the same problems and the same dislikes and fears and anxieties as you did, caused by the same condition that you have, is in its own weird way a great comfort. One of the most painful parts of the article was when both women described the problems they had fitting in at school, and with making friends with other women. Simone admits to having no close female friends, while Sarah finds interacting with women difficult, what with unseen hierarchies, peer pressure, social niceties and the other subtle little things that come with friendship groups among women, not just in high school, but in adulthood. I’m not suggesting that men cannot be two-faced, deceitful and subtly cruel. One of the worst betrayals I have ever suffered was from a so-called male friend. But I have had far more problems with girls in high school than boys. At least you knew when the boys were being cruel.

I’ve been lucky in that most of my closest friends are women, but they’re not ‘ordinary’ women. They are women with mental health issues, unusual fetishes, eccentric dress sense, intellectual interests such as archaeology and queer theory, good (in my opinion anyway) taste in music (and that includes the one who likes hair metal), tattoos, piercings, baggage, personality quirks, a black and often downright wrong sense of humour. Most importantly, they appreciate me for who I am, and anyone with Aspergers who can find friends, male or female, who genuinely care about them and enjoy being around them are lucky people indeed. However, ever since I was a nipper, I’ve always found men easier to talk to in some ways. I knew where I was with men. With women, I more often than not found myself second guessing.

So Rudy Simone, I salute you. Here’s hoping that you give girls and women with Aspergers strength and hope. I’m probably going to buy the book, and if I do, I’ll review it here. So watch this space. If any readers have read it, let me know what you think.

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