Timing things

I haven’t had a single job where I haven’t at some point been disciplined for not arriving on time. Usually, the complaint takes the form of “You’re always late!” and that doesn’t mesh with my literal brain, so I’ll argue that I wasn’t late the past three days, or that I’ve only been 15 minutes late once in the last month and this was the reason, or something like that. Which then gives me a reputation for being intransigent and argumentative.

But aside from whether I’m actually “always” late or not, I do have a problem with timing things.

jablonec-stationWhen I have a specific appointment, I suffer from overbuffering. I’ll go, “Right… I’ll need to catch the 10:55 train, better be at the station at 10:50 so I don’t have to run… Hm, need to buy a ticket, never know how long the line’s going to be, better be there at 10:40… It takes me 5 minutes to get to the station… or is it 10 minutes? I’ve never actually timed it, better be on the safe side, leave the house at 10:25… That means I’d better have my coat on and my bag packed at 10:15, otherwise I’ll be rushing all over the place and panicking… OK, I’ll have to get ready at 10:00.” And the end result is usually that I’m at the station by 10:20, 35 minutes early. (Or, in even sadder cases, that I’m so stuck on the idea of leaving the house at 10:25, that I’ll be sitting on the sofa with my coat on for 15 minutes until it’s time to leave). Which is not really a problem, but it is a tad inefficient, and shows that I don’t really have a good grasp of how long things actually take me.

As soon as it’s a recurring appointment, though, I start getting careless. I remember that last time I twiddled my thumbs for 35 minutes, so I’ll just get myself an extra cup of tea and play on the laptop for a bit before leaving. And that’s when the real shit starts happening. Before I know it, it’s actually 10:45, and I have absolutely no chance of still making it to the station on time.

It’s even more complicated when it gets to work. I think in absolutes. The train leaves at 10:55, which is an absolute. One minute late and the train will have left. Even when I’m messing up how long things take, I still have a very clear end goal. With jobs, it’s not that easy. To my immense surprise, I learned last year that a 9:00am start time doesn’t actually mean the goal is to be there at 9. Because we’re dealing with people here, and their perceptions of me. The goal is that I should be seen to be WORKING at 9. So no getting coffee, no starting up my computer, no going through my schedule. I need to be AT WORK. And that doesn’t mean “present at the office”.

A complicating factor is that when I ask about starting times, I often get the answer of “oh, we’re not that particular about times, as long as you get the work done.” That is a lie. (And it has taken me nearly two decades to figure out it’s a lie). People get annoyed when I always get in later than they do, never mind that I’m also always the last to leave (usually by one or two hours). It doesn’t make sense. It’s all about messy human perceptions. It’s not about how much work I do, or how many hours I’m working. It’s only about how it makes people feel. And apparently, me getting in late makes them feel like I don’t really care about making an effort.

So, knowing all this, why is it still so incredibly hard for me to get anywhere on time?

Because I struggle. I struggle with timing, knowing how long things take me. I struggle with executive function, initiating the actions that will get me somewhere on time. I struggle with why it’s important, because to be honest, how it makes others feel is not a paramount motivation for me.

If there is a specific reason why I need to be at the office ahead of time (like manning the phone line that opens at 8:30, or having a website go live at 10:00), I can manage just fine. But simply keeping up appearances? Not logical. No motivation.

And I think the last part might be crucial. Because I’m hardly ever late for appointments with friends (although that’s also because the one-off schedule overbuffering kicks in there). But with people I’m not emotionally invested in? Not really. And maybe that’s why I get grief for being late for work. Not because it’s a rule not to be late, because others get away with being late on occasion, and I never get away with it. But because people can somehow tell that making them happy just by doing something completely illogical is not that important to me.

The problem is made up of so many unrelated but heavily interactive elements, that I have no idea where to start in fixing it. And I’m not even sure I want to fix it. Deep down, I just want to yell at employers to simply let me be. Let me do my job, because I do my job well and I put in all the hours and I always get things done on time. So why make my life miserable by focusing only on what time I get in? Is that really the most important thing about my job? Get a f***ing grip!

But this is the way people feel. Will I try changing them, or will I try to change myself?

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Meltdown

It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.

The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.

When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”

In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.

Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.

© Julián Rovagnati - Dreamstime.com

© Julián Rovagnati – Dreamstime.com

Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.

Unfortunately I can imagine all too well how that feels.

The welts are still visible on my left hand as I’m typing this.

This is autism

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with the counter melody almost by instinct.

I have problems when people raise their voices, start yelling, even from a street away. I have problems with loud cars and motorcycles and airplanes, those sounds hurt my ears so much. Locations with lots of echo send me into sensory overload. Loud bangs, or even just someone clapping suddenly, frighten the life out of me.

This is autism.

I’m able to make the most outrageous statements in a completely neutral tone of voice and with a neutral facial expression.

My friends call it deadpan.

This is autism.

I’m unable to reach the highest shelves in my kitchen or at the supermarket without assistance. That means I either have to buy specialist tools like stepladders with my own money, or ask others to get things down for me. There are no services available. Sometimes I want to cry with frustration when I can’t get something from the top shelf on my own.

This is being 5’3″.

Autumn makes me happy because the piles of fallen leaves make me want to play in them, throw them in the air, smell the mulchy scent of them, hear the whispery crispy sound of them as they’re crushed. Fallen leaves make me feel like a child.

Winter makes me happy because snow is beautiful and shimmery and light. It gives everything a new shape. It’s soft and crispy at the same time. Snowflakes have the most intricate patterns. And having a snowball fight is so much fun, even though the sensory overload from having a snowball land in your collar is indescribable. Snowball fights make me feel like a child.

Spring makes me happy because there is no colour more beautiful than the green of new leaves. I stare up at them and see the sunlight fall through them. And I feel the wonder of new life, of seeing everything for the first time, the wonder of a child.

Sometimes I am able to shake off the shackles of social expectations and act like a child. I wish I were able to do so more often. Not being aware of social rules has its benefits.

This is autism.

I have to deal with people who don’t think like me every day. One of the greatest gifts that autism has brought me is connecting with other autistic people. Sharing the same way of thinking doesn’t automatically mean that we get along, or that we’re all good people. But there is an instinctive level of understanding that has eluded me for so long. Something that is lacking in the majority of people I meet. They don’t understand. And sometimes it seems as if they don’t even want to understand. That they don’t want me to be me.

I’m tired of being told I’m smart enough to figure things out myself. I’m tired of being told to fit in, to stop being so contrary and different. I’m tired of trying harder. I’m tired of getting fired for not being sensitive to office politics, for speaking the truth at the wrong time, for not understanding that sometimes words are more important than actions. I’m tired of having people angry at me for shutting down, for not looking at them, for not responding quickly enough.

This is not autism.

It is not autism that makes people treat me like this. And it is not autism when I’m hurt by how people treat me.

Just for the lol of it

It’s not only autistic people who have trouble reading body language cues or make really awkward social mistakes.

Making new friends on the underground

John Mayer and Kanye West failing the high five hug

Ryan Seacrest trying to high five a blind man

I don’t want Taylor Swift to hug me either

No comment needed

Lowfive fingerwiggle shakebump?

Ouch

Knee pads are a sensory nightmare

This is why I never high five anyone

Too many choices, so she goes back to clapping. Good girl.

Get out of my face!

Source: Buzzfeed

What Others Had to Say: Love, Overwhelm, Violence

OK this is pretty awesome. Also because I got quoted (whee!) but seriously, so many parents and autistic adults sharing their experiences with upset turning into violence. Make sure to read the original post and comments as well. There is support. It’s here, in our voices, in knowing what you’re going through. You’re not alone.

Emma's Hope Book

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which…

View original post 1,898 more words

Ch-ch-changes

A few years ago, when pizza delivery places here started preslicing pizzas more often, I was really annoyed because I wanted to determine the size of my own slices.

When my pizza arrived just now, it took me about 30 seconds of pulling on the edges to realise it wasn’t presliced. And then another 15 seconds or so to think of a solution (knife!). And then I felt so annoyed with the pizza delivery place for not preslicing my pizza.

Until I remembered that this was how I used to like it.

I’m pretty bad at handling small changes like that. I hadn’t even realised until now. It’s not that I get an emotional meltdown or get stuck and have no way out, but the annoyance is definitely there and it does take me somewhat longer to adapt.

And all because of pizza.

Tripping down memory lane

Age 10. The high point of my “I only want to wear blue dresses” phase. I really hated that video camera flash light, which is why I’m keeping my head down. My youngest brother is not allowed to touch the puzzle pieces (normal sibling behaviour) because I’ve already sorted them according to category (not so normal).

I must have been about 8 or 9 here. Still sucking on my fingers and playing with my hair. Not interacting with the other kids at all.

My 7th birthday. My grandmother is explaining something about my birthday hat, I’m obviously concentrating on what she’s saying but I don’t look at her or smile until she’s done talking. My grandmother might have been on the spectrum too.

Age 5 or so. Flapping my knees. Also forgetting to put on facial expressions unless prompted, and then they’re slightly overexaggerated. 😉

Age 6. Toewalking. Toerunning. Overall fairly uncoordinated motor skills.

I’m not posting the one of me and my younger brother spinning in circles in the back garden because we weren’t wearing much, lol. I don’t think I come across as autistic in these videos all that much, just slightly “off” maybe. But not to the level where I’m stimming in every single video, for instance. And I’m obviously interacting with my family. So I’m not entirely sure what to make of this.

Edited to add:
In fact when first watching all the material, I saw myself behaving like a typical child. The videos start in 1980 when I was 4 and my younger brother had just been born. As the years progressed, my behaviour kept on feeling normal, and that feeling got confirmed when I saw my younger brother behave the same way at the same age.

And then I saw my youngest brother appear on screen, born in 1982. The contrast is absolutely frightening. He is constantly looking at people and smiling and pointing and touching and interacting with them on every possible level. He doesn’t fidget, even as a baby and a toddler. He looks bewildered sometimes but mostly in response to something I or my younger brother do.

As if even at that age, he already understood the rules of social conduct better than we did, and saw neither me or my younger brother following those rules. It’s now nearly 30 years later and he still looks bewildered by our conduct sometimes. 😉