The Hidden Village of Aspergers

September 26, 2014

Attack of the Mutant 50 Foot Kebab

When your starving pitbull starts to eat your leg
You have to watch your children beg and beg

TW: eating disorders

In December this year, I’m going to see the Manic Street Preachers playing their third album, The Holy Bible, in its entirety. It’s one of my favourite albums of all time. However, there is one bit I’m dreading, and that’s when they play ‘4st 7lb’, a song about anorexia which contains lyrics such as ‘I want to walk in the snow and not leave a footprint’ and ‘Mother tries to choke me with roast beef, but sits savouring her sole Ryvita’. If you look up the song on Youtube, you’ll find dozens of ‘thinspo’ videos set to the song. What Richey Edwards, an anorexic himself, would have thought, I do not know; the song, if anything, is anti-anorexia. The lyrics are filled with horror and despair under the ‘isn’t anorexia great?’ exterior. The girl in the song hates food. She doesn’t see it as comforting, warm, nourishing, delicious, even healthy; it is her enemy. At the beginning of the song, there is a sample of Caraline Neville-Lister, a severely anorexic woman who eventually died of the disease, saying, “I eat too much to die, and not enough to stay alive. I’m sitting in the middle, waiting.” When I was younger, I envied the ‘discipline’ of anorexics; now I look back and cringe. I am trying to have a healthier relationship with food, but it’s not an easy process. I write this after having eaten a large amount of Ritz crackers and thrown them up.

Food. My relationship with it is complex. I eat it, I cook it, I talk about it, I swap cookery tips with friends and reblog pictures of cakes on Tumblr, I have a cupboard full of cookery books given to me by family members and copies of Sainsbury’s Magazine, I regularly visit my local greengrocer (Withington Fruit & Veg) and used to buy vegetables at my local monthly market. When it’s my birthday, or friends’ birthdays, I go out for meals with friends, to Pizza Express or a curry house; we share sides between us or try each other’s dishes. Back when I went to synagogue, a group of us – mainly converts – would go out for a meal afterwards. The food is even more delicious at the end of Yom Kippur, when you’ve been sat in a long and draining service and had nothing to eat or drink for hours. One thing that got me interested in Judaism was the love of food, and how interlinked it is with faith. On Pesach, my favourite festival, we have the seder meal (and it’s much more fun when you’re with your mates and you’re all a bit pissed, communal sederim are a bit formal sometimes); on Chanukah, we have doughnuts and latkes; on Shavuot, we have dairy; on Tu B’Shvat, we have loads of fruit, and so on.

Baking has become a trendy thing in the UK, and I actually find this rather pleasing because I’ve always loved baking. When I was a toddler, I learned to bake, as did my brother (whose cooking is out of this world). When Jack and I were teenagers, we were so into baking that sometimes we’d compete for kitchen space. Carrot cake was his speciality and brownies were mine. Delia Smith was the queen of TV chefs, and I learned everything about the basics of cooking from her. Both Jack and I cooked the odd meal. In my family, particularly on my mum’s side, cooking was and is not considered a gendered activity, and everyone does it, except a couple of cousins (although one of them is getting better). There is a running joke on my mum’s side of the family about my maternal gran’s secret stuffing recipe and how many times we’ve tried to replicate it. My cousin Andy has recently got into cake decorating (and not just him – his mum, my auntie Chris, my dad’s sister, made an amazing football-themed cake for my cousin Laura’s birthday earlier this year). My dad cooked, as did my ex-stepdad, and the current one does too (he makes some very nice pasta meals and grows his own vegetables and fruit in an allotment). Jack and I were both packed off to uni with more cooking equipment than you could shake a stick at; my housemates would often steal my garlic crusher, as I was the only person in the flat who had one. Some of my earliest memories are food-related, such as eating duck à l’orange out of a metal tray when I was very little, or coming home from tennis club to find my dad cooking pasta in the kitchen. My ex-stepdad was very big on roast dinners on Sundays. I always dreaded doing the washing-up on Sundays because there was so much stuff to clean, and fat was a bugger to get out of things. This might be one of the reasons why I went vegetarian in 2004, although mainly it was not liking meat. (No kebabs for me, then.)

On the negative side, however, there is the comfort eating, the guilt and the shame that comes with it. I’ve written about bulimia before, and how I’d comfort eat, binge and purge when stressed or unhappy. Recently, I was in Cambridge, visiting my parents. My mum spent most of the weekend in bed, and at one point I went to the Co-Op, bought a packet of crisps and a bag of chocolate raisins, ate them and threw them up. I’m hoping that if and when I see the local mental health services, I will tackle this.

How does this tie in with Aspergers? I think it’s because of my enhanced senses and being sensitive to noise and textures and lights – it stands to reason I’d be sensitive to tastes and smells. There are some foods which I just cannot eat because they make me gag. Aubergines, for instance, and bananas (though I’m OK with banana cake), and cabbages, and swede (I blame school dinners). I also have a raging hate-on for coriander leaves. It’s also the reason, I think, why I like spicy food and prefer to use herbs or spices rather than salt, not to mention the amount of garlic I get through. I am a vampire’s nightmare.

Finally, to end this post and tie in with the Space theme, when Space toured the UK with Republica in March, one hardcore fan, Andy Wilton, brought a cake that his mum had made to the Newcastle gig. It was shaped like a doner kebab. The band loved it and, if I recall correctly, got through it very quickly. (One of my many happy Space memories of last year, incidentally was eating dinner with them; they ordered a Chinese takeaway in the dressing room at St Helens last year, and I ate some leftovers as I hadn’t had much for tea.) I’ve used food as a way to show love or appreciation for someone. (As has Jack – he made a beautiful fairy castle cake for his mate Woody in high school, and he used to bring cakes into clubs. I’m not kidding. He’d put the tin in his rucksack.) When two of my friends got married, I made them cupcakes (and beforehand, I made a chocolate cake which we took to the Wendy House for her hen night), and another time I made them a tin of Rocky Road, with a jar of Bovril in the middle. When my auntie Nicky put me up at her house when I went to see Space in 1998, I made her gingerbread as a thankyou present. I made chocolate fridge cake for my best mate one Christmas, and I’ve made several birthday cakes for my mother over the years. One year, I made her a cheesecake which nearly went horribly wrong, but luckily I had a Plan B. It wasn’t aesthetically pleasing and Mary Berry would not have approved, but no-one cared. My stepdad and his kids were there, as was Jack and possibly his girlfriend, and I sang the Cuppycake Gumdrops song. We ate dinner around a tiny table. It was magical. That is food for me in a nutshell; not just fuel, not just tastes and smells and textures, but also a bonding experience.

August 3, 2014

Fortune Teller

Tears well in their eyes
The strip turned blue, surprise surprise
Your bank balance took a dent
And now you’re Rupert Grint
Nappies cost a bob or two
You wish you were Doctor Who

Controversial post time.

I’ve known since about the age of sixteen or so that I am not going to be a mother. I do not want children. I have never wanted children. I never will want children.

I should probably preface this post by saying that I don’t mean to suggest people with Asperger’s Syndrome should not have kids. There are plenty of parents or hopeful parents out there on the autistic spectrum, and I’m sure loads of them have blogs of their own. This is about me, personally.

The song ‘Fortune Teller’ is about an accidental pregnancy. I had a pregnancy scare in my first year of university, due to my boyfriend and I stupidly having unprotected sex. Luckily, the strip did not turn blue, but it was a tense moment because my period was late. Had I become pregnant, I would have had an abortion. The very thought of getting pregnant and having a foetus inside me frightened me. I was not ready for a child and knew I could never carry a baby to term. I’ve learned my lesson since, I might add, and always used some form of contraception. Even now, I get the chills thinking about it. It’s got nothing to do with losing my figure or stretchmarks or any such body-shaming crap. I have no figure to lose. It was just the thought of having a baby that I didn’t want, and could probably never even love. (As an aside, I hate the idea that you’ve never known real love unless you’ve had a child. I am quite capable of love. I love my brother and mum and would take a bullet for both of them, I love my stepfamily and my other relatives and I’ve loved certain men and women so much it hurts. It is not a feeling alien to me. But that’s another story.)

I don’t hate kids per se, but I’m not good at dealing with them. Older ones and teens, maybe, but little kids and toddlers and babies? No. I find it hard to talk to them or play with them or even relate to them. Screaming babies put me into sensory overload. I get impatient very quickly. When colleagues bring their young children into the office, I do not coo over them (now pets, on the other hand…) When friends of mine announce that a kid is on the way, I congratulate them, obviously I’m happy for them (and I’m keeping my fingers crossed for certain people I know), but I have no feelings of broodiness myself. I’ve tried to imagine myself as a mum and failed. My womb will bear no fruit. Luckily, my mum is fine about this and has long accepted that she will not be getting any grandkids out of me, and got somewhat pissed off when her colleagues at her old job asked her if Lotte was ever going to give her any grandchildren. (Of course, the fact that my brother might want children did not occur to them – and Jack is far, far better with kids than I am, he is kinder and more patient than me, and I think he’d make a great father.)

I do wonder if people would be more accepting of my choice not to have children, or my awkwardness around children, if I was male. When I was younger, I used to be involved in childfree communities on Livejournal back in the day, as I wanted to meet other women who felt the same way as me, and the communities were predominantly female, and so many of the women in the groups had had relatives being perturbed that they didn’t want kids, or even, in some cases, treating them as they were somehow not real women. Women are supposed to be maternal and love kids and be happy to sacrifice everything for them. What so you mean, you don’t want children? You selfish bitch, you’ll change your mind one day, you were a child once, you’re just bitter because no man will want to fuck you, no-one will take care of you when you’re older, the most powerful thing a woman can do is bear children, you’re a failure as a woman, and so on. Oddly enough, I never heard the same accusations being levelled at childfree men. Somehow, a man not wanting kids was fine. I abandoned the childfree label for several reasons which are not relevant, but at the time, those groups were therapeutic for me and it was also a relief to discover that several friends of mine, some cis women, some genderqueer,  didn’t want kids either.

At university, the man I obsessed over got into an argument with me about children. He said that getting sterilised was an irreversible process (no shit, sherlock), and that his mum wanted daughters, but look how that worked out (he has two brothers). My last boyfriend also wanted kids, and in retrospect, I wonder if our relationship would have crumbled over this if I hadn’t dumped him. I don’t think I could even be a stepmother; I wouldn’t want to inflict myself on other people’s kids. My ex-stepsister lived with us for a period in 2003 and she brought her young daughter with her, and any maternal feelings I may have had died there and then. Constantly being asked what I was doing and not being able to take a shit in peace drove me up the wall. Put bluntly, I would be a fucking rubbish mother, I am too unpredictable and temperamental and used to having my own routine and space and not having to compromise, and no child should ever have to suffer having me as a parent. I hate living with people, and living on my own was a very big leap for me because I’d spent so long living with first my family and then various housemates, and it made me realise how much I needed my own space and my own life. Anyone can be a parent in the biological sense, but not every parent is good at the job.

If Jack ever has kids, I’m happy to be an auntie to them. However, that’s as far as it goes. I do not want children and I do not think I could be a good mother. I’m not putting myself down. I’m simply stating a fact. It does not make me less of a woman or less of a human being.

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.

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