The Hidden Village of Aspergers

December 17, 2012

No, triggering a meltdown is NOT a good idea.

Filed under: relationships with others — kankurette @ 5:12 pm

I am not going to blog about the recent shootings in the US and how the killer is reported to have Asperger’s Syndrome. I don’t feel qualified enough to comment on it, and there are many American bloggers on the spectrum who are better equipped to talk about it than I am. All I will say is that I will never ever understand the mentality of someone who goes into a school and shoots people, many of them little kids, who did absolutely nothing whatsoever to deserve it. May their memories be a blessing.

While reading up on the matter, I was linked to a blog by an abuse survivor on the spectrum who mentioned that Autism Speaks suggest triggering a person on the spectrum into having a meltdown, and documenting it. I cannot for the life of me get how this is a good idea. Deliberately triggering someone into having a meltdown is just cruel. Meltdowns are horrible, exhausting and frightening. I had a particularly nasty one last month, in Berlin.

I have an interest in German history, having studied loads of it for GCSE and my degree, and my mum suggested we go to Berlin as a birthday present. It wound up with Richard, her boyfriend – who is a history teacher and has done trips there, so he knows the city fairly well – his two kids and my brother, who had been to Berlin before, all coming with us, and I’m not complaining. It was lovely to have the extra company, and although the amount of history I took in bordered on information overload and my feet were killing me after climbing the Bundestag building, I am not complaining. I had a fantastic time. That is, until we got to Schonefeld Airport.

Mum had flu and had been sick, and we had had to wait around for some time for check-in and it was late at night, so I was not exactly in the best of moods, but when I went through the metal detector, it went off. I’d taken off my boots and taken my iPod out of my pocket, but what I didn’t realise is that I was supposed to take everything out of my pockets. I genuinely had no idea, as I don’t fly much. I got sent back and forth through the damn thing, and apologised. The airport staff laughed at me and took the piss out of me in German. When I absent-mindedly placed my hand on the gate, one of them shouted at me not to touch it. Eventually, when the alarm went off again, they brought the scanner out and cased my body, and when they found meds in my pocket, I explained it was medicine and was ordered to take everything out, my copy of Cider With Roadies included, and put them in the tray. My patience was getting seriously frazzled. I was ordered to put my foot on a step after setting the alarm off again, and when I got felt up, it was too much and something just snapped.

The result was not pretty. I was terrified. I heard this horrible wailing noise, like a sick dog, and realised it was me. People were staring at me. Everything seemed brighter and noiser and more in my face than before. I was bent over, my face in my hands, my body shaking. I could barely do up my shoelaces. I had lost control. I felt like a frightened animal trapped in a cage, running around in circles and biting its own tail. I felt as though I was being attacked from all sides by a horde of eldritch abominations who screamed in my ear and clawed and pawed at my body and tried to tear me into a thousand pieces, and there was no way out. This may sound funny, but it wasn’t. Luckily, Richard, Mum and the kids were wonderful and all made sure I was OK. So thank you to them, and a big fuck you to the airport staff for laughing at me and humiliating me and making me feel less than human. It took me ages to calm down because I was so shaken. Airports are not fun for me at the best of times – all that queueing, all that being shouted at, all those delays and being stuck in tiny cramped spaces.

Meltdowns take so much energy out of me. If someone documented me having a meltdown, even with the best of intentions, I’d never forgive them – I have little self-confidence as it is, and the idea of me freaking out being documented and shown to strangers is absolutely terrifying and humiliating. When I have meltdowns at work – a particularly bad one resulted in me smashing a glass in the toilet and slashing up my arm, and another one ended with me smashing my head against a wall – I feel like the biggest fool ever afterwards. I feel stupid and weak and embarrassed for losing control, and wonder what they’re all saying about me behind my back. She’s crazy. She’s a nutjob. You can’t trust her with anything or she’ll freak. She’s a spoilt bitch who throws tantrums. Isn’t she a bit old to be acting like that? I wouldn’t have wanted to be one of the people at Schonefeld, watching a grown woman exhibiting the sort of behaviour you’d expect from a toddler. But when it gets too much, that is what happens, and the scary thing is that I don’t always remember it. There are gaps. Apparently, for people who have anxiety and depression-related illnesses, depersonalisation is quite common – I’ll do things and it won’t be me doing them, it’ll be an outside force controlling my body, and then I’ll regain control and wonder why people are staring and why my forehead hurts.

I didn’t let the airport incident spoil a holiday, though it did come close. I just have to remember in future to take everything out of my pockets, especially metal and electrical items, to take off my coat and shoes, and then I will hopefully not have to deal with that again. Because once was enough.

5 Comments »

  1. “While reading up on the matter, I was linked to a blog by an abuse survivor on the spectrum who mentioned that Autism Speaks suggest triggering a person on the spectrum into having a meltdown, and documenting it. I cannot for the life of me get how this is a good idea. Deliberately triggering someone into having a meltdown is just cruel. Meltdowns are horrible, exhausting and frightening. I had a particularly nasty one last month, in Berlin.” It’s for research. I agree with you that it is cruel, but there are cruel people in the world who don’t care about their patients. I learned that the hard way.

    Comment by sarahmint — January 19, 2013 @ 2:01 am | Reply

  2. Great writing! I am so happy to have just now discovered your blog as I was browsing for some comments on Judaism and Aspergers. There is a real urge for that. In my present field education, which there has been rather many of, they are viewing the whole Autism spectrum in terms of behavior modification therapies, ABA and Lovaas method – “scientifically proven, so scientifically proven”, over and over again. This is something like a total opposite of what I think of Asperger life and culture, with its overlappings with queer and religion. Your blog is bringing some very much desired fresh air into that.

    I am so sorry and surprised to learn about your experience at the Berlin Airport. “The airport staff laughed at me and took the piss out of me in German.” I am a rather frequent flyer to Berlin, and the staff members and the security check has always been friendly, and even fun. I don’t know about Schönefeld, as I always fly from Tegel in the North. I just love TXL, and never had any problem there.

    Last June in Berlin I took part in the Alternative Gay Pride in Berlin Kreutzberg-Neukölln (that is the alternative queer corner of the rainbow movement), and then also I wanted to view the soccer Euro Championship Games at the Funmile public viewing area at Brandenburger Tor. This is rather unexpected and maybe inappropriate for a person who likes to avoid large crowds. I am no sports person and there are about half a million people there, but then I have been doing this for quite a while, and I have my own place and position protected by the beautiful big trees, never in the middle of a crowd. However, that time my planned side-gate to enter was closed due to some prominent visitor or political summit, and so was the next one. Against my good planning I ended up in a queue pressed between high fences on sides of the street. The crowd was quickly mounting up behind me. I couldn’t turn back and leave, I could not reach to the safe sides of the street. The people were obviously very close to each other with physical contact, each small group talking loud in German. It was quite painful, and I started to get really worried. This is not safe. What about if one gets really sick. The ambulance could not get there. In this setting I could have had real meltdown, and that must not happen. The queue was moving extremely slow, and the crowd started to push from behind. Bad. Finally, however, I reach the security check point and passed in to the area. Then I found my familiar routes into the friendly shadows of the park and beautiful old trees. After a few beers, I recovered and took my familiar place on the side on leaning on tree. Then it was good and beautiful again, but anyway I am going to remember this and never again place myself on that same queue.

    The risk is great especially in these situations where one has a clear mental picture and expectations on what is going to happen, and then these expectations just fail one after another and one cannot leave but just has to drift along. That can get seriously bad.

    Comment by ilarique — January 28, 2013 @ 9:47 am | Reply

  3. Thank You for publishing my lengthy comment!
    I thought I was caught in moderation, so I started at WorldPress a new blog “Ancient Asperger Evenings”. My first post “How To Avoid Meltdowns When in a Wrong Place” is partially the same text that I sent first to your blog (but I didn’t I know it was being published). http://ilarique.wordpress.com/
    I hope you don’t mind.

    Discovery of your blog and writing was the inspiration for creating the new blog.

    Comment by ilarique — January 28, 2013 @ 11:20 am | Reply

  4. Thank You for publishing my lengthy comment!

    I thought I was caught in moderation, so I started at WorldPress a new blog Ancient Asperger Evenings. My first post How To Avoid Meltdowns When in a Wrong Place is partially the same text that I sent first to your blog (but I didn’t I know it was being published). I hope you don’t mind.

    Discovery of your blog and writing was the inspiration for creating the new blog.

    Comment by ilarique — January 28, 2013 @ 11:21 am | Reply

  5. I somehow found your blog tonight and am so glad I did. I have perused several of your entries, and every single one is well written, informative, and compelling. So many things about what you have written in various entries remind me about situations in my own life. I love your meltdown description. You captured something that is almost impossible to describe. I only discovered Aspergers a little over a year ago, at about age 41. I have reached a point in my life where I am able to avoid meltdowns for the most part (I think coping and dealing just gets better with age), but I have been doing a lot of reflecting. So I just want to say, you are a fantastic writer and I appreciate you. Love your blog.

    Comment by Cyn — November 14, 2013 @ 9:22 am | Reply


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