The Hidden Village of Aspergers

March 1, 2014

If It’s Real

Filed under: introduction,Uncategorized — kankurette @ 7:38 pm
Tags: ,

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.

1 Comment »

  1. […] 1. If It’s Real: yes, it is a disability 2. Neighbourhood: moving house 3. Mr Psycho: emotional difficulties 4. Female Of The Species: not fitting in with other girls 5. No One Understands: the diagnosis 6. Dark Clouds: memories of Barcelona 7. Blow Your Cover: first sexual relationship 8. Influenza: getting ME 9. Life Of A Miser: managing money and other household things 10. Avenging Angels: relationship with my father 11. The Man: coping at work 12. Disco Dolly: festival tips 13. Fran In Japan: role models outside the family 14. I Am Unlike A Lifeform You’ve Ever Met: on books and the imaginary world 15. Bastard Me Bastard You: unwanted attention from men 16. Numb The Doubt: on drugs 17. Everybody In The Madhouse: primary school 18. Diary Of A Wimp: obsessive behaviour 19. Gravity: Dad’s death 20. Juno 54: relationship with music 21. Hell Of A Girl: bisexuality 22. Suburban Rock ‘n’ Roll: the Chester years 23. The English Language Let Me Down: speech and language 24. Paranoid 6teen: relationship with my brother 25. Quiet Beach: the overdoses 26. Fortune Teller: on being childfree 27. Armageddon: on parties 28. Attack Of The Mutant 50ft Kebab: love-hate relationship with food 29. Perfect Sin: relationship with religion and G-d 30. Falling In Love Again: relationship with the Perrys (my current stepdad and his teenage kids, Alice and Tom) 31. Guestlist To Hell: the people who keep me alive […]

    Pingback by An announcement | The Hidden Village of Aspergers — March 1, 2014 @ 7:40 pm | Reply


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