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.

September 21, 2014

Autism and Girls:

This has got nothing to do with the Space miniblogs, but 1) I need a distraction from the despair of my beloved Everton getting totalled by Crystal Palace, and 2) I found this on Facebook and it interests me.

Flyer found on Facebook

Flyer found on Facebook

In case the text is a bit hard to read, I’m going to reproduce it here and add my comments:

Unlike stereotypical autistic boys, autistic girls may have:

– No language delay problems This is true, I learned to talk quite young – I was about two, I think.

– NO interest in technical things (like spinning wheels) I don’t remember having any interest in ‘technical things’.

Autistic girls often:

– Are very shy Yes, I was pretty shy. Still am.

– Are less prone to aggressive outbursts (especially away from home) I don’t remember having any aggressive outbursts as a kid. Those came later, as a teenager and an adult woman.

– Want to make friends Yes, but it was very hard for me, which goes without saying.

– Copy social behaviour I still do. I have a rather large complex about what is and isn’t the ‘right’ way to do things. I should probably not take behavioural cues from Tumblr, though.

– Only have one mother hen friend at a time I’m not sure what a ‘mother hen friend’ is, but I was the sort of kid who’d have one best mate rather than a large crowd of friends like my brother did.

– Are highly intelligent and academically gifted Yes. I wasn’t a savant, but I did get good grades.

– Have very good memories (such as for facts or events) Yes, and not much has changed there. To quote my brother, “Lotte is an encyclopaedia of family history. She remembers everything.” This actually came in handy recently, regarding my mother, in an event which I am not prepared to talk about right now.

– Say NO a lot I might have. I don’t know. 

– Have poor eye contact, especially with strangers Yes, and I still do. If I don’t look you in the eye, I’m either nervous, or I don’t like you. Generally, it’s the former!

– Enjoy arranging toys into groups or sets Yes. Definitely. And later, CDs and books.

– Are very creative and imaginative Yes. I loved writing stories and I read like the clappers. 

– Create elaborate fantasy worlds Yes. Mum used to get angry with me for living in ‘my own little world’, and I got upset because I felt like she was attacking the fantasy world in my head where all my characters lived. This wasn’t a DID thing, incidentally. It was more like an imaginary friends thing. I used to play with toys and dolls and make up stories for them, often based on things I’d seen on TV.

– Have obsessive interests (such as in animals, songs or books) Yes. Abba, Asterix books, Sylvanian families, certain TV programmes. When I got older, it was Space, Naruto, Everton FC, the Chalet School series, and many other things.

– Are hypersensitive to stimuli (such as sunlight or sudden noises) Yes. I hated people shouting or loud crowds, and would put my hands over my ears or cry. I’m still the same. The partner in the Manchester office kept shouting at me when I was having a meltdown, and that made it even worse. People ask me how I listen to metal. It’s expected noise, basically. You know the singer’s going to start screaming, plus it often has a nice tune or beat to accompany it. I draw the line at drone, though. Friends of mine love Sunn O))), but I could never get into them for this reason.

– Have over-the-top seeming emotional reactions Yes. At one point, Mum said she was going to take me to a doctor because there was clearly something wrong with me, because I cried very easily. 

By age 7 or 8:

– Social alienation increases as peers use more complex nuances Yes. I felt left out a lot of the time, and some girls did take advantage of the fact that I was quite naive and took things literally. 

– Stress increases at home, whilst being model pupils at school Yes. Admittedly, a large part of it was my father’s illness, but there was also the fact that my mum was frustrated at my weird behaviour and my brother and I didn’t get on very well a lot of the time.

Credit for this flyer, by the way, goes to L Style, an autistic mother. At the bottom, she has provided a link to the National Autistic Society’s section on gender.

September 6, 2014

Armageddon

UV rays, Factor 40
This game of Twister’s got a little bit naughty

Here’s something about me which may sound surprising: I like parties.

More specifically, I like parties where I can catch up with friends, people get a bit pissed but not to the point where there’s vomiting (of which I have seen and done my fair share) or fights, the music’s good, there’s noms and drink on tap, you don’t have to worry about the police closing you down or gatecrashers, and everyone’s generally chilled and happy. Most importantly, I like parties where I know people. I always found Jewish Society parties difficult because I could count the number of people I knew on one hand, and I coped by getting drunk. This is not something I would advise. A couple of bevvies are OK, but when you’re on meds and you have a tendency towards getting depressed, you have to watch yourself. I’m not worried about turning into my mum, it’s more that when I drink when I’m unhappy, I end up turning into a maudlin drunk and/or saying and doing things I regret, such as one time in Germany where I stole a pretty little glass from a pub, only to smash it in a jealous rage after seeing a guy I fancied getting off with another girl. I cringe when I think about it. Kids and animals could have hurt themselves on that glass.

I like parties that are not being thrown by me. I am, frankly, shit at entertaining at home. My parents gave a fair few dinner parties and my brother always had a gang of friends over for his birthday (and had a clandestine party while my mum and ex-stepdad were away one weekend, though fortunately he and his mates did not trash the house and cleaned up before the parents came back, and they were none the wiser). I can only remember having one birthday party, when I was in infant school, and I hated it. I found the whole experience really stressful. Ever since, whenever I’ve wanted to do stuff with friends for my birthday, I’ve gone out to a restaurant or pub or club. I’m less self-conscious when I don’t have to do the cooking or fuss over guests and make sure they’re entertained. Parties are not fun when the host is neurotic. I’ve yet to host a Passover seder for the same reason; I can lead prayers and the Hallel, which I know fairly well from having to sing them at synagogue, but the thought of cooking for a group of people and having to cater for different dietary requirements and abide by the kitniyot rule (which I don’t keep, but some of my friends do) brings me out in hives.

One good friend of mine, E, who I have talked about before, always threw the best parties. I have so many happy memories of those parties, mainly involving people doing stupid things while drunk, such as burning a Michael Jackson doll in effigy, climbing on the roof and balcony, and playing games of Binhead where the loser had to do a dare (mine was ‘rant into a sink’; apparently the only words anyone could understand were the swear words, of which there were many). Sadly, I missed the one where several men got naked. At one of those parties, my ex-boyfriend and I got together. I also went to a few in Sixth Form, mainly at my friend Clare’s house in Vicar’s Cross. I was with like-minded people, there was always good music playing in the background – Hole, Radiohead, System Of A Down and so on – and I was starting to come out of my shell. Then there were all the society parties at university. The Rock Soc ones were fun (save for the first year end-of-term party, which culminated in me vomiting into my sink and passing out on my bed); the J-Soc ones were tolerable if I knew enough people. Purim parties and Booze for Jews were the best; at least at Purim parties, everyone looks and acts like a tit because it’s customary to dress up and drink until you ‘can’t tell the difference between Mordechai and Haman’ (cue booing). (I was annoyed that my ‘avenging angel’ outfit didn’t get in the Jewish Telegraph.)

Of course, there were also terrible parties, like the rave I went to at Ed Whalley’s farm (he was a Chester politician with a reputation for being a bit eccentric) where most of the kids there were people who’d bullied me, or a party at the Scout Hut where I had one alcopop too many and got a ton of flak for it at school when it got out that I’d been drunk; the party at my ex-boyfriend’s house where one woman had an epileptic fit, I had a major depressive episode, and a guy was kicked out for breaking my ex’s guitar; or the Year 11 leavers’ party where I was so ill my mum had to pick me up, I told my ex-stepdad to fuck off, and spent the next day with an enormous hangover. It was a learning experience and a wake-up call. Rarely did I get so paralytic again. I hated the feeling of being out of control, and only really did it because I thought that was what you were supposed to do.

One reason I went to society parties at university was to push myself out of my comfort zone, to meet new people and socialise. It was hard, and there were a good few false starts and nerves, but it did help me become more confident, although I still have to make sure I’m in the right mood for fear of being a massive downer. I am not a massive party animal; I am a homebody at heart and always have been, and these days, due to being ill, I don’t go out much. But I don’t want to become a recluse either. Not everyone with Asperger’s enjoys parties, and that’s fine. They’re not for everyone and a room crowded with people and noise can be hell on earth for people on the autistic spectrum. But for me, the odd one is fine. In a way, it’s a form of self-care; I need to remember how to talk to people and interact with them. It’s something I worry I’ll forget.

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