The Feed: Women with ASD

Here’s a segment from yesterday’s Feed about women and girls on the spectrum.

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The Fifth Day – Staying Home (Jerusalem)

I slept soundly last night, a solid nine hours until I was woken by the wake-up call.

I couldn’t detect much swelling on my foot, and the rest overnight certainly helped. Moving very slowly, I was finally ready to head down for breakfast. I’m a bit cold-y and queasy, so I was planning to just have a cup of tea.

When I got down to the dining room, the leader of the group cornered me to tell me off for not saying anything about my foot last night. “You shouldn’t tell everyone in Australia before you’ve told us!”

I thought I hadn’t done much damage to it last night! I mentioned it to the group member helping me on the wall when I did it – “Ow, I just landed a bit funny” – but by the time lunch was over, I’d gone pretty numb. The temperature dropped dramatically over lunch – it even hailed for a few minutes – so that probably contributed. I knew it hurt a little after I’d rested for a bit before dinner, but I didn’t realise just how much it hurt until I was ready for bed.

It’s not like it’s broken or anything. It’s not even bruised.

And I did ask to miss some of the walking today. Just because I didn’t specify why!

Although, as it turns out, it’s not possible to just miss the tunnel walks this morning; I’d either have to go on the bus and wait, or miss the whole day. Since the group leader had already told me off for not ice-packing my foot last night, and I was pretty close to tears by this stage (no doubt in part due to the fact that I’m still exhausted – I’m not tired, really, anymore, but still exhausted), I decided to stay at the hotel today.

“After all,” I said something along the lines of, “For a tunnel and two fake things, it’s probably best to stay and rest for other things the rest of the week.”

“Don’t say ‘fake things’!” I was admonished. “That’s very offensive!”

The Upper Room is a traditional site, so I concede it’s probably not fake. A lot of these traditional sites, I’m sure I’d rather enjoy, were it not for being with a group of Pentecostal-Baptists who generally scorn anything involving Catholic/Orthodox tradition, with a tour guide who makes no secret of his opinions on anything.

But the other thing this afternoon is the Garden Tomb, and we already had a long diatribe a few days ago from our fearless guide about how it’s a very recent tradition, it gives you an idea of how it would have looked but it’s mostly wishful thinking, and so on, and so forth.

“It’s very offensive to many of our group members! They’re not fake!”

“I’m sure they’re not,” I allowed, “And I’m sure if I were less tired and sick, I’d be less offensive.” Right then, I didn’t care. Also I was trying to convince myself that I wouldn’t miss too much by staying home for the day.

“It’s like that conversation the other day; you’re being a bit judgemental.”

Remember that conversation that messed me up all night? Yeah, apparently it was about me being a bit too judgemental. That’s not how I recall it. Maybe everyone’s just hearing me wrong to how I intend it. The other night, I’d commented on how the tables of Korean Catholic tourists were praying before dinner, and how we hadn’t prayed over our meals the entire trip.

“Well, that’s your responsibility!” I was told harshly then. “You can’t blame anyone but yourself for not praying!”

“I have been saying grace to myself,” I insisted. “I just thought it odd that on a Christian tour, we haven’t been saying grace, that’s all. I miss it.”

“How do you know we haven’t been saying grace?” one asked, and another added, “Our knees are raw from praying!”

In an attempt at levity, I scoffed and said, “Yeah, because Baptists are known for praying on their knees.” (That’s sarcasm, by the way).

I have no idea how we got from there to me trying to defend my Anglican church and the Anglican tradition (“we’re up and down throughout the service”), and then I was accused of saying people from other churches were wrong.

“I don’t think other churches are wrong. I consider myself anti-denominational. There are lots of traditions among Christian churches, and I think each tradition has merit. There’s nothing wrong with the various traditions, they’re just different expressions of faith and different ways of doing things.” (Also, you know, we’re commanded throughout the epistles to “keep the traditions as they were taught to us”. I have a much better time accepting a tradition more than a thousand years old than I do one that started a few hundred years ago).

How anyone could think I’m judgemental of other denominations is beyond me. I grew up non-denominational, I’ve spent formative years of my life in Baptist, Pentecostal, and low-church Anglican churches, I’ve visited Lutheran and Adventist churches, I have good friends who are Catholic, and I’m currently splitting my weekends between a traditional Anglican church and the Church of God Seventh Day.

“Although,” I couldn’t help bur point out at the time, “I’ve noticed some people at college can be very judgemental about other denominations.” It’s been a major sticking point of mine last year – one of the lecturers actually said that we shouldn’t visit other denominations in case we ‘get confused’!!!

“We shouldn’t talk about denominations,” I was told, “We should just say whether people are Christian or not Christian?”

“So you’re saying we should pass judgement on whether other people are Christian or not? How is that any different?”

Even if I’m anti-denominational, I have no problem with other people choosing to identify with one church tradition or another. But honestly, it’s one thing to observe people’s behaviour and deduce from the fact that they’re praying both before and after the meal and crossing themselves that they’re Catholic; it’s another thing completely to look at someone and say whether they’re Christian or not.

“Would you say they’re Christian?” I asked, gesturing to the Catholics.

“That’s not for us to judge.”

“It’s just that I’ve known lot’s of people from the Baptist tradition who will say right-out that Catholics aren’t Christians.”

This Christian/not-Christian thing has been a recurring theme on the trip. Yuval stated boldly the other day that he doesn’t always believe someone when they tell him they’re a Christian. “Maybe if they say they are a Believer, or a follower of Yeshua, then I will believe that they are Christian.”

Right. So I tell people, “I’m a Christian,” but he wouldn’t believe me? It’s not like I’ll go around saying “I’m a Baptist” or “I’m an Anglican”. I might say “I’m a Christian and a worship at an Anglican church at the moment”, but I’ll always identify myself first as “a Christian”.

But, according to Yuval, that’s not good enough. He doesn’t trust people’s self-identification as Christians. They’re Ethiopian Orthodox, maybe, they’ll identify themselves as Christians, but he’s not going to believe them. How can he make that decision? If someone tells me they’re a Christian, then they believe in God and follow Jesus, and I’m going to assume that’s true until it’s proved otherwise, because they’ve told me that.

“I’m a Believer,” he wants me to say. Right. A believer in what? That Jesus is God? Satan believes that! A “Christian” is someone who follows and strives to emulate Christ – it’s in the name. I may be a Believer, but I’m a Christian more to the point.

But anyway, back to this morning. I concede I was a bit harsh in calling the Upper Room and the Garden Tomb “fake”, but in all fairness, I’m sure Yuval’s going to call them that not in so few words. He can be quite emphatic about places he doesn’t think are genuine. I was trying to hold back tears from the dressing-down and just wanted to get out of the conversation at that point.

So, yeah, maybe I should have told someone about my foot last night. But I didn’t realise it was quite so bad – and it’s not like it was very bad – and it doesn’t do to complain, anyway, particularly when no-one else seems to be having any trouble. I know I’m overweight and not as fit as the rest of them, and I don’t want to seem like the stereotypical unfit fat person. I’ve conceded enough weariness on this trip – I missed climbing Mount Arbel and Tel Dan last week – I don’t want to be a burden.

Not to mention, as I said, I didn’t realise how much my foot hurt until literally when I was typing up the last post right before going to sleep last night. When I got back, I was aching all over from exhaustion and just wanted to take care of that first. And it’s not like I didn’t try to get out of some things today. Would I have tried to miss out on half a day’s sightseeing for no reason?

On a completely different topic, it seems the Great Synagogue trip was overrated because the ushers wouldn’t let them in at all, so they walked for five minutes there and back for five minutes of standing at the door peering in.

So, after finishing my tea and asking for a bag of ice from Nader (who ticks our room numbers off as we go into the dining room), I’m back up in my room elevating my foot. I expect room service will be around sometime soon, although I’ll just ask them to deal with the bathroom (all our towels are wet).

I don’t mean to imply in these posts that the whole trip has been bad. It hasn’t. I can see how it might seem that way, since I’m usually pretty tired at the end of the day, and I tend to state the negative and leave the positive to speak for itself. (I’m trying to work on that). I’ve really enjoyed a lot of things (although there are many I think I’d have enjoyed a bit more with a bit more time and walking a bit slower).

But please, please, if you get worried about me from something I’ve said in the posts, please don’t start contacting the group leaders to tell them off! I just can’t deal with the headache of being pulled aside and told off for telling people in Australia about my problems; about being told that she’s got texts telling her things that I, per the rules laid down at the beginning of the trip, should have told her first. You may have all day overnight; I might plan to say something first thing in the morning but by the time I get down to breakfast, the message has already got through the wrong channels and then I’m in trouble.

And I’m sure it’s not meant to come across like a telling off. “You don’t have to do anything if you don’t want to; it’s not like we’re in school.” Yeah, but it seems like that. Maybe it’s because I’m immature; maybe it’s because I’m recently out of school; maybe it for who-knows-what, but it seems like we don’t get much choice in a lot. Yeah, maybe they say we do, but when it comes down to it, we get frowned at when we try to sit out of things without giving a good reason (“utter exhaustion” is not a good reason), and maybe it’s because he’s not the best with English but Yuval always comes across a little judgemental and condescending if you ask out of something.

I’m getting off-track, and I should definitely stop complaining now. I’m sure everything will seem nowhere near as bad after I’ve slept a little more. I so wanted to enjoy this trip, and see everything I could – and I have enjoyed it, for the most part. But I’m not as up for everything as some of the others in the group are. I can’t keep the pace they do. I can’t take the noise they can. I spent ten hours a day with twenty-five people, I can’t face games with them in the evenings when all I want to do is process the day and go to sleep.

I can’t believe the trip is almost over. I want to stay for longer and see more. I want to go back to some of the places and see them again. There’s so much here, and the prices of everything aside, it’s a good country to be in.

But, on the other hand, I’m glad the trip’s almost over, because I don’t know how much more I can take. It’s a relentless pace – it has to be, I suppose, to see everything. And we’re a more leisurely trip than most! I can’t imagine that. And trying to get on with twenty-five people is wearing on me, too. It’s easier with some than others, and I think sometimes I just take things the wrong way.

So please, no more texting when you’re concerned about me. I’ll be fine. I can handle it. It’s not all bad.

(Even if, right now, I feel like having a good cry and going back to sleep).

Autism Spectrum Disorder Pamphlet

Or, “What You Must Know About Autism Spectrum Disorder [From Someone Who Lives It]”, this is a pamphlet I did for Year 11 English back in 2012, and includes everything in the posts “10 Fast Facts about ASD“, “6 Greatest Myths about ASD“, and “What Causes Autism?“. Some of the information/ websites may be slightly out-of-date.

ASD Pamphlet Side 1GASD Pamphlet Side 2

Thoughts in a Meltdown

Most of the time, you probably wouldn’t know I had ASD. I hide it pretty well.

When I’m oversensoried or have a meltdown, any sort of learnt behaviour goes away. I am autistic.

Some small part of my brain knows I’m being autistic. I can recognise that what I’m doing is like a little kid with severe autism. But I can’t do anything about it.

Everything is emotion, sensation, and clinging to rules and routine.

Emotion: anger, frustration, lethargy, sadness, numbness, grief, fear.

Sensation: too loud, too sticky, too prickly, too clingy, my skin crawls and I have to get away.

I can feel it coming on. Tension in my muscles. An uneasy feeling in the pit of my stomach. Tightness in the chest. My skin feels numb; I’m walking through honey.

I try to stave it off. Release tension. Fingers tapping out Rondo Alla Turka. Hands flapping at my sides. I pinch my skin with my nail until skin comes off.

Sometimes it works. Sometimes I can push it to the back of my mind and ignore it.

A meltdown is like a bell curve. You can stave it off for a little while, but it just keeps looping around at the same spot, building tension, and then it’s all much worse in the end. Better to get it over with, but that’s not always possible.

Imagine a rubber band is stretched almost to snapping point. You need to let it go. It might hurt, but it will be over. But you can’t let it go. Imagine keeping that rubber band almost at snapping point for hours, even days.

You probably can’t tell, at this point. I don’t know how. I can tell when it’s happening to kids. Maybe I’m just better at hiding it. I can smile and nod and engage in normal conversation. It feels like I’m inside a bubble. Everything sounds weird. My skin is numb. My guts are crawling. I’m detached from the interaction.

I don’t always know what causes it. Sometimes I can make a guess, afterwards. It’s just a build-up. Sometimes there isn’t even a “straw that broke the camel’s back”. It just keeps growing.

I want to run and hide and cry and hit. I need to feel something. I imagine taking a knife to my skin or a pin to my leg. To feel something, to release the tension. I don’t want to kill myself. I just want to equalise. I don’t know why I want to. I don’t want to. I feel like I need to. Sometimes I do.

I’m angry. I’m not angry, I’m sad and frustrated and scared and broken inside. It comes out as anger. Shouting, running. Stop talking to me, I can’t handle it! Just leave me alone, just let me be!

Don’t leave me alone, I can’t stand to be alone, I can’t stand having you there. You’re useless, what are you doing, why aren’t you helping, I don’t know what I need you to do, but you’re not doing it.

Lord God, help me. Why am I like this? Help me deal with it. Please help me not upset her. I can’t tell her how I feel, she’ll be upset, I can only tell you, you already know what I’m thinking. Help me, Lord, I need you.

Tears sting my eyes. I don’t know why I’m crying. I can’t deal with everything I’m feeling. Tears hurt, but it’s all the brokenness inside me coming out. I bury my face in my fists and sob.

I feel week, I have no energy. I can feel the tension leaving. Stop hovering, I’m dealing with it. I curl up in a ball. I try not to touch anything. It’s sticky, it’s slimy, it’s touching and I don’t like it.

I need time. I need time to deal with things and to recover. I don’t have time. I have commitments. I have assignments. I need to change out of these wet clothes, have a bath, I can’t wear dirty clothes if I’m clean, I can’t wear clean clothes on a dirty bed, I can’t have a bath in the middle of the day, better to wait until tomorrow, I can’t have a bath tomorrow morning, there isn’t time, I don’t bathe on a school morning, I do it the night before, but I can’t be clean in a dirty bed.

I need a day to recover. I don’t have a spare day. I have work to do. I have classes to attend. I need to pull myself together now, push all this away and behave like a person again.

I ignore it. It’s not gone. I haven’t released it all. I never will. Things will always be too loud, too much, too fast.

But I can deal with it.

For now.

“You Just Pick It Up!”

Hi! Me again! Sorry… how long has it been? Sixteen days? My goodness!

Well, I have an excuse. I broke my foot. And no, I don’t have a dramatic story. I fell out the back door. That’s all. But it’s my excuse, and I’m sticking to it.

And I’m not even going to post my own post! Gasp! Actually, I wanted to reblog something from Lady of the Cakes, but I can’t work out how to do that, so you’ll have to just click on this handy link:

http://ladyofthecakes.wordpress.com/2013/11/25/urban-language-myths-you-just-pick-it-up/comment-page-1/#comment-8641

Because she makes some really good points, and she does it while being witty and funny.

I’ve blogged about a similar topic before, here: https://coveredrachel.wordpress.com/2013/06/17/what-is-fluency/. The topic in question being the annoying tendency of… well, pretty much anyone who can only speak/ hold a conversation in one language… to assume that people who speak more than one language have some freakish abnormal innate talent for learning languages.

Which, as anyone who’s learnt a second language can tell you, simply isn’t true.

I’ve probably mentioned it before, but here’s my stance: I firmly believe that there is not such innate talent for language (despite someone trying to convince me I have it at least once a week), and that anyone can learn a language with time, motivation, and stubbornness. (Or persistence. I’m not entirely sure on that one.)

Oh, and a good reason is probably important, too. Actually, I’m pretty sure that’s why Australians apparently aren’t particularly good at languages. (And Australians who bother are considered some sort of genius).

The other day, someone tried to convince me that people say they don’t see the point in learning a language to cover up the fact that they feel stupid about being unable to do so. This I can’t believe. A lot of people who claim to be unable to learn a language say just that, not that they can’t see the point in it. (Unless you’re talking about Gaelic. Then no-one can see the point in it). And living in a rather large country which pretty much all speaks one language, English  (ignoring some parts of central Australia where monolingualism is Pitjantjatjara is high), and where the closest country is five hours on a ‘plane and is New Zealand, which amazingly enough, also speaks English (and is pretty much like Australian in every way except it’s greener and wetter and smaller), means that a lot of the “true-blue” Aussie types really, truly, don’t quite comprehend that there are places out there where they’d be unable to communicate. (This is something that I doubt most people comprehend until they’ve been stuck in a strange country unable to communicate their utter lost-ness).

But anyway, I diverge. After getting rather annoyed that whomever I’m talking to thinks I have some freakish innate talent for languages, I then want to explain to them that I believe anyone can learn a language if they really want to. Some of them nod, accept my point of view, and move on. Others will argue the point.

And, really, how can you say all this to someone who is monolingual and convinced you’re a freak and that they’d never be able to learn a language, mostly because they did Indonesian or German in primary school and can barely count to ten due to a lack of a decent teacher, without making it sound like you think they’re lazy and not trying hard enough?

That said, and yes, I think I’ve said this somewhere before, yes, of course, now I have some sort of “freakish talent” for languages… by monolingual standards… maybe… and it’s simply because I’ve stuck at a few and now have the appropriate skills to compartmentalise, relate concept, and, well… I actually know the difference between a noun and a verb now, which I wasn’t quite clear on five years ago. Anyone who’s studied four languages, even if they’ve only managed to become anything resembling proficient in one, would be able to do that. It doesn’t mean I have any weird gene, it just means I was really stubborn when I started out.

(Which, now I think of it, could be a weird gene… After all, people with Asperger’s are known for being really stubborn and sticking to whatever their current obsession is.)

And, you know, while I might be some sort of crazy language genius to a monolingual person, I’d personally consider myself somewhere down the bottom of the talent range when it comes to learning languages. Yes, I know bits of a lot, but I don’t know much of any, except English and possibly German. I have a friend who is fluent (native-speaker level) in two (German and Dutch) and very close to native-speaker level in English, and did language Continuers in Year 12 for Spanish and French. One of my piano teacher’s other students is doing Continuers German and Spanish… and she’s a year ahead in German. Those people really are good at languages, and they don’t think anything of it (and probably don’t obsess about it like I do).

Anyway, I think what I’m saying is that there’s a certain amount – and by a certain amount, I mean a lot – of hard work that goes into learning a language to any sort of proficiency. Well, that and embarrassment, but usually both. And, even though people seem to think I’m some sort of crazy language genius, the truth is I’m not. By the standards of pretty much anyone remotely interested in learning languages properly, I’m probably lazy, slow, and have a short attention span. The only language I consider myself fluent in is English. My German is pretty good, but I can get out of my depth very easily. I may be able to impress with a few sentence is some languages, I may be able to hold a basic conversation in others, but I haven’t “picked up” those languages… I’m still working at them.

And now this has grown into a very long post, and I’m not at all sure that any of it makes sense. Oh, well. Just go over to Lady of the Cakes’ blog and read hers. It’s much better than my ramblings, I assure you.