Highly verbal even when alone

“There was something I wanted to blog about today. I just can’t remember what it was,” I say to the kitchen tap as I’m filling the kettle. “I should have made some preliminary notes last night.”

I play with the cat a bit, until the water starts boiling. “Sorry sweetie, I have to make water now.” As I walk into the kitchen I tell the kettle, “Make water, silly, I meant make tea. Tea tea tea.”

Then as I’m rummaging around for the tea bags, I lift my head and say to my teacup, “Oh! I just remembered. I wanted to write about talking to myself out loud!”

I’ve lost my marbles… © Johnsroad7 – Dreamstime.com

I think everyone is familiar with the trope of the “town crazy”. We had one in the town where I grew up. An old woman swathed in several colourful coats, shawls, skirts, and other pieces of fabric, walking around town with a small grocery buggy and muttering to herself. Sometimes she’d yell things that nobody understood. The children were usually a bit scared of her but the adults said she was harmless, just out of her mind. The only thing everyone agreed on was to leave her alone and don’t engage her in conversation because… well, you never knew. After all, she talked to herself out loud.

As do I.

I also meep to myself, sing phrases to myself, ummm to myself, shhh to myself, berate myself and laugh at myself. I sometimes do this via my cat because it’s more acceptable to talk to a cat and say “Oh, owner was being a bit silly wasn’t she? Yes she was!” than to directly address myself and tell myself I’m being silly. Out loud.

“You’re silly.” Yes self, I know I’m silly. Now shut up.

It’s funny because I don’t think I’m crazy. It’s just easier to vocalise thoughts sometimes, to get them out of my head when it’s getting crowded in there. Or just random sounds. One of my coworkers was the first to point out that I constantly made small noises while concentrating on a task. I’d never noticed. And while I knew I liked the sounds of certain words, I never realised I would sing them to myself over and over if I went to do something associated with that word.

“Cuppa tea cuppa tea cuppa tea tea tea.”
“Ooooh! Books! Books books books books books.”

(Note: I am actually choosing examples here with words that sound fairly similar in Dutch and English. I can’t make myself use an example where the Dutch word is just completely different, because translating it to English simply sounds wrong. I can’t do it).

So now I’ve described three ways of talking to myself. One is just sounds, meeps, ummms, pompoms. One is probably echolalia, repeating words or phrases (even though I’m repeating myself, not repeating someone else or something I heard on TV, so I’m not sure if that counts). And the last one is fully formed sentences that are a logical representation of what is going on in my head. A one-sided conversation, if you will.

It sort of feels like they all serve the same function. A way of soothing myself, of making myself focus, or helping me think and make concepts more concrete. It doesn’t feel very different to just be pomming to myself or to speak in full sentences. Except that with the full sentences, I become gradually aware at that particular moment that I’m talking to myself out loud and that this is the sign of a crazy person and not socially acceptable. But I don’t really give a damn, to be honest.

I’m still struggling with wrapping this post up in a nice and tidy conclusion.

The thing is, it’s all new to me. Not the talking out loud or making sounds. But the awareness of it. The fact that these are all well-known autistic behaviours. I didn’t even include any of them in the list of symptoms I wrote for my therapist. So other than describing what I do and how it feels to me, I’m at a loss to interpret any of it and give it some meaning. At a loss to embed it in the autistic framework that I’m slowly building for myself.

Never mind the social implications.

Because that old lady talking to herself? She’s just like me.

My grandma

I have wanted to write something about my grandma for quite some time now, but I have no idea where to begin.

My gran even took me to Pere Lachaise. None of the other grandchildren had insisted on that. She thought it was a bit odd but she enjoyed the visit.

My grandma died in 2009, at the age of 95. So she’s been around a long time. When I was growing up, we lived about 40 km away. In the Netherlands, that’s not very close (although not extremely far away either). I can still recall every kilometre of that car ride. When I graduated from high school and started at university, I moved closer, but of course that didn’t mean I visited more often. That’s what happens.

I loved my gran a lot, though. When I was 15, she took me to Paris, like she’d done with her other two grandchildren as well. Just the two of us, doing touristy stuff. I had a lot of fun. I also got into a lot of arguments with her. I think that was the first time I realised that my gran and I were very much alike. Infuriatingly alike.

A couple of days back, there was a special guest post on Musingsofanaspie.com written by her daughter. The way she described her mother reminded me how parents nowadays are able to have much more open and affectionate relationships with their children than back in the 40s and 50s. Because my grandmother was never able to have that kind of relationship with her children – my father and my uncle.

Gran was born in 1913, just before the start of World War I. Her father was a dairy farmer in a small village (half the people still living there are my relatives in some way). She told me that when she was around 9 or 10, her father left the local church and decided to raise his children in the anthroposophical way, after the tenets of Rudolf Steiner. I do know that my gran wasn’t at all religious, which seems to fit that story.

When she was older she was allowed to go to secondary school and get a diploma, which was not unheard of but certainly not common for a farmer’s daughter in those days. It enabled her to work at the fairly big flooring manufacturer just outside the village (and yeah, I’m pretty proud to say that that same local factory is now a global enterprise). I’m not entirely sure what she did there, she said she did lab work and after an accident with hydrochloric acid the director allowed her to work in his office as an assistant while she recuperated. She sounded very proud of having worked for this man.

The reason why I sound a bit careful when describing my gran’s stories is because sometimes she felt the need to appear of a higher social standing. For example, she always said her dad was a “gentleman farmer” or “landed” when I know he was nothing of the sort. My parents have discovered some things through genealogical research that don’t quite match up with her stories either. Since I’m not entirely sure which ones are fake and which ones aren’t, I’m simply going to describe things the way she told them to me. I do think most of them are true. She was a marvellous story teller though.

That’s my gran all caught up in a story she’s telling on my 4th birthday. The girl in this video isn’t me, by the way.

Anyway, when my grandparents met and got married in 1934, they started their own business. My grandad was a carpenter and upholsterer. It was hard at first, because of the depression, but business increased gradually and they were able to buy a big house with a store underneath after a few years. That’s where my dad was born just after World War II. Because someone had to manage the store while my grandad was out doing assignments, my gran became a businesswoman. She did the books and finances as well. My grandad was doing client acquisition and making social calls and being an all around nice guy with a gift for interior decoration. The business pretty much shifted from upholstery to interior design. They started becoming a household name in the upper classes of the area. I think that’s where my gran’s ideas of having to maintain a certain class came from – after all, you can’t have an ordinary farmer’s daughter advising you on which candlesticks to buy.

From the way my father tells it, the store was everything to her. After the store was handed over to the next generation, she took pride in her cooking and her garden and her quilts. She wasn’t very involved in the lives of her two children and didn’t show them much affection. When she did show interest in someone else, it was always with clients or acquaintances. With her children, she kept her distance. But then again, my grandad was fairly authoritarian and not very touchy feely either, which wasn’t considered abnormal in those days.

After she died, I was expecting to hear people describe my gran as “egocentric” or “tough”. However, hearing her described as “unemotional” and “loveless” on top of that shocked me to the core. My mother, her daughter-in-law, said my gran was incapable of showing love to those closest to her. But what about me then? Well, I was far younger than her first two grandchildren, so more distance meant more love. Apparently. I don’t want to discount the experiences of my mother and father in relating to her, but it’s just so different from how I saw her.

My weird grandma. Opinionated, infuriating, stubborn gran. Emancipated, rigid, fairness-in-everything gran. My grandma who actually respected me for standing up to her. Gran who grilled every man I dated to make sure they were good dating material and wouldn’t let me squander my talent on housework and childbearing. My grandma who spent hours on the phone talking about her life and her interests and hardly ever stopping to ask how things were with me. Gran who yelled at me for not being able to boil an egg and loved explaining to me how to make meatballs after I begged her to show me (she complimented me afterwards by saying mine “were nearly as good as hers”). My gran who had the craziest sense of humour and who loved staying up until 4am with her weird opinionated infuriating granddaughter to drink lots of alcohol and talk about Life, the Universe, and Everything.

On my 7th birthday. She’s pointing and laughing because we’d built a huge heap of fallen leaves in the front garden and were diving into it. The little girl is me.

I still miss her.

I’ve been told I’m probably the only one.

Rainbow soup

So I decided to make rainbow soup today.

It’s not actually called rainbow soup. I just like it and it’s got a lot of colours so that’s why.

I don’t really feel like doing an official recipe so I’m just going to show how I made it.

Starting with about two handfuls of green beans.

I hate green beans when they’re stringy or have big beans inside or are gigantically overcooked. Other than that I quite like them.

If you want to make sure they aren’t stringy, there’s a trick to cleaning them. If you sort of use the knife to pull the tip of the bean towards you while cutting, you can get the string to come with as well. I hope the picture sort of shows that.

It’s really hard to take a picture while holding a green bean in one hand and a knife in the other.

I cut the beans into small pieces, probably around 1-1.5cm. I guess that averages out around 0.5in. Does it matter? Not really.

Then there’s the big pot of chicken stock. Two litres. I’m lazy and I always use ready made stock from jars. It’s just so much easier.

I prefer jars to making stock from cubes because this way I can just put it in the pot without thinking about it. I do add plenty of water because I don’t usually like very salty food.

This is called a lombok. It’s a chili pepper used in Indonesian cooking. I’m not actually cooking Indonesian food this time but it’s the most common pepper available in the Netherlands. I think it’s a variation of the Cayenne pepper.

I like lomboks because they’re spicy but not insanely so. Plus they have an awesome red colour.

This one is about the size of my hand.

There’s a couple of ways to clean chili peppers. I prefer cutting them lengthwise and then scraping out the seeds and interior.

The more of the orangey interior (seed ribs) you remove, the milder the taste will be. Today I’m not interested in sniffles so I’m removing most of the insides.

After that I’m cutting them into small strips.

I’m mostly doing it for the colour.

Then it’s on to the tins.

Crispy mais. I don’t know what’s so crispy about it. It’s just maize kernels. Or corn kernels. You know what I mean. There’s a picture.

I always make sure to buy the kind without added sugar. Seriously. Maize is sweet enough already. Silly people.

I drain off the water in the tin before adding the contents to the chicken stock.

It’s starting to look pretty.

Green, yellow, and red.

I had to put in quite a bit of effort to get this picture. The maize kept sinking to the bottom of the pot. And as with the green bean and the knife, it’s a bit hard to take a picture while stirring soup with a really big ladle and making sure the pot stays in place.

The sacrifices I make for this blog.

Another tin!

Diced tomatoes. No idea why this tin is in English, since it’s actually a Dutch brand.

This step in the preparation might be a leftover from when I didn’t eat tomatoes. What I do is I take the diced tomatoes and rinse them about a thousand times till I only have the bits of tomato meat left and no juice.

Fresh tomatoes are not an option (even though I actually like those now) because the skins peel off in a nasty way and peeling them beforehand is a lot of effort.

I might try peeled tomatoes but I’d have to rinse those as well. And they feel icky when you’re cutting them up.

So rinsed diced tomatoes it is. Rinse rinse rinse. Not much left when I’m done rinsing.

Without the juice the soup doesn’t become a red cloudy mess either. We want rainbow soup, not tomato soup.

(Oh, on a side note: at my supermarket they have like half an aisle filled with different types of tomatoes. It is 100% impossible for me to pass it without starting to sing “Let’s call the whole thing off” softly to myself).

Time to clean and dice the chicken breast.

Yeah, I know you can get pre-diced chicken breast. But I’m very particular about icky bits in my chicken. I’ve learned how to eat (and love) other parts of grilled chickens, but breast definitely needs to be skin and tendon free. So usually I prefer buying a whole breast and cleaning it myself. I’m better at it than their machines.

You don’t want to know how often I find bits of bone.

Potatoes next. (Potayto! Potahto! Let’s call the whole thing off!)

I use a specific potato breed called “Eigenheimer” from Friesland. The Dutch have a thing about potatoes. But any fluffy, starchy potato will do.

What I want is for the bits of potato to become soft and crumbly when I eat them. But they shouldn’t be dissolving while still in the soup. I don’t want thick starchy potato soup.

So now we’ve got our pot of chicken stock, filled with green beans, chili pepper bits, maize kernels, diced and rinsed tomatoes, diced chicken breast, and diced potatoes.

Let’s go and bring that mother to a soft boil.

I usually aim for about 30 minutes. The chicken and potatoes need plenty of time to cook.

While the soup is softly bubbling to itself, I’ve got time for my favourite part.

Coriander. Cilantro.

I love it. A lot of people hate it.

That’s ok. Autistic people know everything about “irrational” dislikes of food so nobody here is going to force anyone to eat something they don’t like.

I’m just going to make you look at it.

Pretty green leaves. So pretty.

And now I’m going to take my big-ass knife and destroy the pretty green leaves.

Chop chop chop!

Well, I’m not that fast. This is a really sharp knife and I still can’t feel the tip of my left ring finger from where I cut into it with this same knife in January. So… proceed carefully. But thoroughly.

I need very finely chopped coriander.

Because I’m going to make meatballs! And my experience with not-so-finely chopped coriander is that it’ll end up everywhere (plate. frying pan. hands) except inside the meatballs.

Lean ground beef. Seasoned with some fresh black and white pepper and a pinch or two of salt (I use literal pinches. Like what I can pinch between my thumb and first two fingers). Again, I’m not that fond of salt but you can add more if you want.

Next, I add the coriander, a small egg, and some bread crumbs.

The egg and bread crumbs are purely optional, I only add it because the meatballs turn nice and brown when frying with a bit of egg in the mix, and it makes it a bit easier to roll the balls and not have them fall apart in your hands or while frying.

But it does make everything a lot ickier to touch. So I can understand if you skip this part.

Knead the meat until it starts feeling like bread dough. If it’s still really sticky and slippery, add some extra breadcrumbs. You literally want a bread dough feel. That’s the easiest for rolling the meatballs.

(This feeling is not applicable when not using egg and breadcrumbs. Then you’re on your own. I’m so mean).

Take a bit of meat about the size of your thumb and roll it between your palms in a circular motion until you get a ball.

I always try to minimise amount of washing up, so I usually put the meatballs directly into the frying pan. Not heated up yet. Just a little bit of olive oil to prevent them from sticking to the pan and a small pat of butter (about thumb size) for the nice frying action later on.

Repeat lots of times until you run out of meat.

Then turn on the heat underneath the frying pan and fry the meatballs until they turn brown, on a high to medium heat. Depends on how much it’s splattering. I don’t like splatter, it always ends up on my hands and then I have burns and that hurts.

Turn off the heat under both pans (yes, the soup was still softly boiling, remember?) and add the meatballs to the soup. Again, try to avoid splatter. Boiling soup is hot.

What do you mean, accident prone? I only have cooking mishaps about once a month or so.

And it’s so worth it.

Look. RAINBOW SOUP!!!

Soundcaged

Waiting room at the mental health clinic. Walk in. Sit down.

© Arpad Nagy-Bagoly – Fotolia.com

The clock. Every second. Tock. The clock. The clock.
The window is open.
A car is getting closer. VrrrrrrrrRRRRRRRRRAAAAAAAAuuuuuughhhhhhhhhmmmm.
Music. Somewhere. Radio maybe? Too faint to hear which song.
Receptionist typing.
Someone LAUGHS. Outside? Softly fading away.
The clock. The clock.
Pouring coffee in a plastic cup.
Someone COUGHS.
The clock. The clock.
Music. Is it getting louder? Still too faint to hear which song.
The window is open.
Road works. Banging bricks together. Clink. Clink clink.
Sipping coffee from a plastic cup.
The clock.
Receptionist typing.
Air conditioning vent. Whrrrhrrrrrh.
Whrrrhrrrrrh.
Whrrrhrrrrrh.
A car is getting closer. VrrrrrrrrRRRRRRRRRAAAAAAAAuuuuuughhhhhhhhhmmmm.
The clock.
PHONE RINGS. Jump up.
Only once. Settle down.
Receptionist. Talking.
Music. Which song which song?
Road works. Bricks. Clink clink.
The clock. The clock. AC vent. Whrrrhrrrrrh. Whrrrhrrrrrh.
Someone SLAMS a door somewhere.
Receptionist typing.
Footsteps.
Sipping coffee from a plastic cup.
Sliding doors in the hallway. Whshshshhhhh.
Sliding open.
Sliding shut.
Sliding open. Sliding shut.
Receptionist typing.
Sliding open. Stuck? No rhythm.
Footsteps.
Someone COUGHS.
Someone opening a file cabinet down the hall.
Footsteps. HIGH HEELS.
The clock. AC vent. Whrrrhrrrrrh.
“MR. JONES? HI HOW ARE YOU?” Jump up.
Not for me. Settle down.
Receptionist typing.
Sipping coffee from a plastic cup.
Music definitely louder now. Can almost hear the song.
Footsteps. High heels. AC vent. Whrrrhrrrrrh.
Sliding doors. Sliding open. Whshshshhhhh.
Sliding shut.
The clock. The clock. The clock. The clock. THE CLOCK. THE CLOCK.

This description is based on the actual sounds I heard while waiting for one of my diagnostic appointments, last Thursday. This wasn’t a sensory overload, just the things I heard. The fluorescent lighting didn’t breach my threshold that day so I haven’t included them in the sound list. I also haven’t included the receptionist’s phone conversation because of possible privacy issues and the conversation the receptionist had with one of the therapists about one of their colleagues possibly having a burnout and not returning to work because by that time I was concentrating on my stim toy and besides it was really none of my business even though I could hear every word.

What is my face doing?

That dreaded moment has arrived again. Time to renew my passport. Of course my passport expired a couple of weeks ago already (yay executive function!) so I really need to get it done SOON. In the Netherlands you are required to have a valid ID document with you at all times, and that means a passport or an official ID card. Driving licenses aren’t always valid ID, and besides, I don’t have a driving license. So passport it is.

And that means getting my picture taken.

That’s what I hate about renewing my passport. The rest is fairly standard, scripted stuff, nothing much that might throw me off. But photos? Argh.

Because I have no idea what my face is doing.

This is my current passport photo

With all the rules about “no smiling, no visible teeth, face has to be completely visible, neutral expression”, having my picture taken becomes a task of gigantic proportions. Especially the neutral expression bit. In my current passport picture I look like a particularly depressed heroin junkie. And that took about 25 minutes of non-stop instructions by the photographer. “Tilt your head a little bit to the left. No, LEFT, not right. Raise your chin. Don’t smile. Open your eyes wider. Stop tilting your head to the right. You’re smiling again. Don’t frown.” And so on and so on. It’s really stressful because I have no idea how I look. Am I smiling? Is this ok? WHAT IS MY FACE DOING?

I used to practice at home for hours, trying to see in the mirror what the “right” position is to put my face in, and trying to remember which muscles I’m tensing and which I’m relaxing and what facial configuration does that result in and can I reproduce it? But usually as soon as I get to the photographer, I forget everything I’ve practiced and simply adopt my standard “deer in headlights” look. Or inappropriate smiling.

But that was before I knew about autism and maybe it’s not just me who gets confused by all the facial expression stuff. So this time I was determined to do it differently.

I took a mirror with me.

At the photographer’s, I tried to explain that I have trouble knowing what expression I have on my face and would it be OK if I kept the mirror in my hand so I could check? He just looked at me and asked me why on earth did I need to do that for? OK, fail. He then started explaining all about the requirements which I KNOW BY HEART so really that’s not the problem here. Fail again. Just take the damn picture already.

And then I went to a second photographer.

Yes, it’s an expensive solution. But I figured, if I just get as many passport photos taken as possible, at least one should fit the requirements. I can’t deal with the stress of not knowing whether my photo will be accepted or not. And if it doesn’t get accepted, I’ll have to do the entire thing ALL OVER AGAIN. So I’d rather have some extra expenses than all that added stress. I’m learning to accommodate myself. Which rocks, by the way.

When I explained to the second photographer, he turned the computer screen so I could watch and see each picture he took and adjust my face in whatever way I felt comfortable doing. And he helped me get my errant left incisor under control as well (it has a tendency to slip over my lower lip). And it took about 15 tries but I didn’t feel as self-conscious as at the first photographer’s.

Maybe I should go to a third photographer as well, but I’m sort of out of spoons and I think the second set is probably going to fit the requirements. Although I look cuter in the first set, I think. Oh well. I’ll take both of them with me when I go to the passport office.

First photographer

Second photographer

Got milk

So I was reading this really funny and insightful post on Notesoncrazy.com about trying to get milk from the hardware store. Where milk was supposed to be maternal care and nurturing and how you shouldn’t expect your mother to give you milk when she’s not a grocery store. Or something like that. It was insightful. I’m doing a really bad job at explaining this.

© Nicholas Watts – Fotolia.com

Anyway. I started to write a comment, thinking of making a joke about how I never liked milk anyway and maybe that would explain why I never go looking for milk. Or maybe why I don’t have any maternal feelings. I’ve always said I don’t have maternal feelings. I like taking care of people though. But no maternal feelings.

And then I suddenly got hit by lightning.

Well no, not literally. Just this bright flash of really painful light *inside my brain*. Thoughts connecting. Sparks flying. Maybe some short circuiting going on. It felt painful. It still does while I’m typing this, but for a different reason.

You see, other women always told me that at a certain age, I’d get over my disinterest in babies and suddenly I’d feel those maternal urges welling up. (Or like the men said, my ovaries would start rattling). And then I would be able to think of nothing else and end up having children and love them to bits. Happens to all of us, apparently. And I would be deliriously happy even though it would be the complete opposite of how I felt about babies now.

I turned 30 and those feelings didn’t happen. I turned 33 and thought I wanted to have babies with someone, but it seemed more like a feeling of sexuality and horniness, not maternal anything. And the guy turned out to be a jerk so that was a narrow escape. And then I turned 36 and I sort of felt like maybe I do want children? Because it’s kind of sad that maybe I will no longer be able to in a few years time. But not an urge or anything. I held my little nephew and even though he was the cutest baby I’d ever seen, it didn’t awaken any feelings in me. So I was right, I simply don’t have that maternal instinct. I don’t think puppies are all that cute either. Kitten are extremely cute, but just as cute to look at as adult cats. See? No maternal urges.

I even said of myself I must have faulty brain wiring for not going gooey over babies. Because that’s supposed to be biologically hardwired. Big eyes and big mouth = need to nurture. So I must be faulty.

I made jokes about having a faulty brain.

© MAK – Fotolia.com

All that based on what other people were telling me I was supposed to be feeling.

And I never considered that maybe I feel things differently from others. Even when I started figuring out that maybe I’m autistic, I still didn’t think that this might mean I simply feel things differently from others. That it doesn’t mean I don’t have emotions. But that how others describe those emotions simply isn’t related to how I feel them.

Until I started making a joke about how I don’t like milk.

The thing is. I think I do have maternal feelings. They just feel different from what I’ve always been told they should feel like.

I want to keep a child safe inside me. I want to know what it feels like to be pregnant and grow and learn new things about my body. I want to feel a child’s first kick. I want to feel the pain of contractions.

I want to keep a child warm and safe and sheltered during those first confusing days and weeks in the big world outside, all the bright lights and loud sharp noises unfiltered and all coming at them at once. I know what that feels like. I want to help them learn how to cope with that.

© annems – Fotolia.com

I want to feed a child and learn what is yummy and what is yucky all over again. I want to see their personality develop in their likes and dislikes. I want to see if they like soft blankets and dancing in puddles as much as me. Or maybe they will like something else and I will discover that joy through them.

I want to support a child and teach them that it’s ok to be curious and enthousiastic and passionate. I will help them understand things without shaming them for not knowing things right away. We all have to learn new things. I want to learn new things as well through teaching and supporting a child in their journey of discovery. I want them to teach me as well.

I want to care and give love. Even if that love isn’t expressed the way some people say love ought to be expressed. I know my parents love me, even though they sometimes expressed it in odd ways. I’m sure a child will know I love them too. Just as much as I love kittens.

I have no idea what to call this feeling.

But I know how to describe the feeling that I’ve always believed myself to be cold and uncaring and not maternal, because I trusted that others knew more about emotions than me.

That feeling is sort of anger and grief mixed up. I think.

And too many tears to count.

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.

Further testing

Well. At least I am a little bit autistic enough.

With regards to the intake interview you have had with my colleague on August 13th, we would like to conduct an Autism Spectrum Disorder test with you. Our office manager will call you to set up several appointments, at least one of which will be with one of your parents (to get a heteroanamnesis on your past), and one to get an anamnesis on your current situation (for this appointment we will also invite someone close to you, this has to be someone who knows you well).

So all that effort was just to see whether I even deserve to be tested? Dear lord.

And the interview with someone close to me will be interesting. I’m single. I have a few close friends but I can’t really say if any of them know me well, because I tend to downplay or hide my weaknesses. Do my friends think I’m autistic enough? I could ask my ex, he definitely agrees on me being weird. 😛

But am I supposed to be present at both those interviews? The wording seems to say (“also”) that I’m only to be there for the second test, but not the one with my mother or father. So why one and not the other? CONFUSING.

It should be easy

I am physically incapable of cleaning the toilet without getting bleach on my clothes.

Yes. This was a new shirt.

At least the toilet is clean.

Rijsttafel revisited

Last week I wrote something about rijsttafel and why it’s a perfect meal for picky eaters. I couldn’t find any good pictures in my stock photo subscription so I decided to team up with my friend Robin because he’s a really great photographer with a passion for food photography. 🙂

We had some great fun presenting all the different dishes (and of course eating all the food afterwards)!

Rijsttafel

Nasi putih

Nasi goreng

Nasi kuning

Daging rendang

Daging smoor

Daging bali

Sateh

Telor sambal goreng

Sajoer lodeh

Boontjes sambal goreng

Tempeh

Kroepoek

Seroendeng

Spekkoek

Empty dishes

Cognitive love

Hoera! (Hurrah in Dutch) – picture by my sister-in-law

My baby nephew is celebrating his 1st birthday tomorrow. He’s my youngest brother’s first child and so very adorable. But my brother and his wife are both adorable too so I guess it’s a genetic thing. 😉

Anyway. Because I’ve been so fixated on the birthday party being tomorrow (notes in my Google Calendar and everything), I completely forgot that his actual birthday is today. Until my sister-in-law posted a picture on Facebook showing my nephew with a party hat.

Oops. My mind immediately went into social panic mode. Keep in mind that this is my brother, who knows better than anyone how awkward I can be and who loves me regardless. He’s the only person in the family who isn’t socially awkward in one way or another (my father’s pretty good with people as well, but he admits it’s still not entirely effortless and he doesn’t really start enjoying it until after one or two drinks). None of us are diagnosed but my youngest brother is very obviously the only neurotypical person.

I had no idea what was expected of me.

I’m going to the birthday party tomorrow. My brother knows this because he invited me. So should I congratulate them tomorrow? When I’m supposed to be there? Or is the posting of this picture some kind of clue that they’d like to be congratulated today as well? Will they be upset if I wait until tomorrow? Or will they say I’m silly for calling to congratulate them when I’m already coming by tomorrow anyway?

OK. Hold on. Take a deep breath. YOUR BROTHER LOVES YOU. Nothing you can do will make him think you’re any more of a fruitcake than you already are.

And so I arrived at the easiest solution. I called my brother and asked him if he wanted to be congratulated. He laughed and said yes. And also that he liked me calling to ask. And that he was looking forward to seeing me tomorrow.

I love my family. Even if I have to reason it out sometimes.

Leave your heart unlocked

I don’t often post things without commenting on it or saying why I wanted to write about it. I saw this video in a post from George Takei on Facebook, which in turn was a link to an article on Upworthy… but I’d like to post the video like this. My heart broke into a million pieces in the last 10 seconds.

Neil Hilborn, you are an amazing and courageous man.

Smile

I was thinking about how nervous I was about the diagnostic process and her reading my letter. Trying to keep my breathing even. Looking at a painting on the wall. Trying not to fidget too much.

“Do you realise you’re smiling right now?” said the therapist as she looked up from my letter.

I looked at her, feeling confused. “What do you mean?”

She clarified, “Here in your letter it says you often smile at inappropriate moments. So I was wondering if that was what is happening now. You’re smiling. Are you aware of that?”

I started grinning and said I had no idea I was smiling. And then got completely confused about what I am saying because yes I know I am grinning now. But not smiling a minute ago, I didn’t know that. Was I really smiling?

She said she could see that the grinning was a nervous reaction. Those things are obvious to people who can read faces, I guess? And she said she understood what I was trying to say. So I could stop worrying about my words and what my face was doing without me having any control over it. When I had permission to stop doing words I could start feeling. I felt… at a loss for words. That’s how they call it when you can’t grasp a concept, when it doesn’t fit reality. When things simply don’t make sense. I don’t know how to describe my feeling.

I was smiling.

I didn’t know.

Side effects

Had my third diagnostic interview today, some hopeful things, some sobering realisations, will write more about that soon. Need to write about something else for a minute.

Like I’m running a marathon.
(Although honestly, I have no idea what that feels like.)
Constantly out of breath.
Heart beating in my throat.
Palpitations. Randomly.
Can’t concentrate.
Tunnel vision.
Shaking hands.
Nausea.
Cold sweats.
Hot flashes.
Insomnia.
Restlessness.
Muscle pain in my thigh from unaccustomed stimming.
Meaning I’m jiggling my left leg non-stop now.

Dealing with people and sounds and lights is becoming more impossible by the day. I’m getting to the point where a trip to the supermarket leaves me gasping for breath for 10 minutes afterwards.

“Anxiety is a common side effect of giving up smoking.”

Is inability to function a common side effect as well?
It’s been two weeks since I quit. Hoping this gets better. Very soon.

Yay more pictures!

I’m getting addicted to taking pictures for the blog header! It’s a really nice challenge to look for things and colour schemes that would suit the overall blog theme. No rainbows this time, though.

This is the roof of the new bus station behind Amsterdam Central Station. The coloured panes will eventually spell out “Amsterdam CS”, I think. They’re not finished yet. I especially like the blue sky in the background here.

Close-up of a basket full of lobelia at the beer festival last Saturday.

Close-up of the multicoloured ficus plant I have in the front window. No idea what the official name is. It’s still alive and with my plant caring skills, that’s saying something.

The stained glass window in my living room. One of the reasons why I fell in love with my house.

Close-up of the Moroccan lamp in my hallway.

One of the pages from “The Ballooning Adventures of Paddy Pork” by John S. Goodall. One of my favourite childhood books, together with Eric Carle’s “The Very Hungry Caterpillar” and Dick Bruna’s “The Apple” (click on bekijk trailer, Dick Bruna is awesome).

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. 😉

Rijsttafel

This is not going to be an actual recipe, but a description of a fairly typical Dutch thing called “Indische rijsttafel”. I’m not going to spend a lot of time describing what it is because there’s plenty of resources available for that. What I am going to spend some time on is explain why “rijsttafel” is a picky eater’s idea of heaven.

Eating out is always stressful for someone who has trouble deciding what he or she wants. This is not just “being difficult”, it’s the difference between a snapshot decision for a neurotypical person and an overwhelming multitude of equally valid choices for an autistic person. How do you decide? It’s not that easy. And what if you hate whatever you ended up choosing because everyone was staring at you and waiting for you to make up your mind? The social rules governing complaints about food are another minefield that’s nearly impossible to navigate.

This is why I love rijsttafels. In Dutch Indonesian restaurants, you sit down, someone decides how much money you’re willing to spend per person, there might be a few extra questions about what kind of rice everyone wants (white, yellow, fried, or sticky – easily solved by just getting every kind) and that is it. Next thing you know, there’s about 40 different dishes being served out. You can be as picky as you like and simply start by eating some rice, then if you feel confident or relaxed enough, try a very small spoonful of whatever looks non-threatening. THIS IS HOW EVERYONE EATS RIJSTTAFEL. It’s awesome.

So in case you ever get the chance to eat at a Dutch Indonesian restaurant, I thought it would be nice to show you some of the dishes that you may encounter.

	Nasi putih	White rice. Think that’s fairly trigger free with regards to texture and taste. Unless you don’t like rice.
	Nasi goreng	Fried rice. Usually contains bits of egg (with omelet texture) and fairly easy to spot bits of cooked ham and leek. Can contain other things as well. Took me years before I could eat it, too many different textures going on.
	Nasi kuning / koening	Yellow rice. My favourite. Slightly sweet coconut taste but dry, not sticky.
	Lontong	Sticky rice cakes. You don’t see them very often. Fairly mushy, tastes of white rice and water.
	Daging rendang	Looks terrible, but it actually tastes brilliant. Slow cooked beef in a creamy lightly-spiced sweet coconut sauce.
	Daging semor / smoor	Another one that looks terrible but isn’t. Slow cooked beef in a sweet-spicy soy sauce.
	Daging rudjak / roedjak	Slow cooked beef in a thick spicy sauce.
	Daging bali	Slow cooked beef (noticing a theme here?) in a very spicy sauce (made primarily with crushed chili peppers)
	Sateh / sate	You guessed it, satay. Comes in several different forms, although the most common is chicken (ajam) with a medium spicy peanut sauce. Texture of the sauce is usually very smooth.
	Sateh kecap / sate ketjap	Same as above but instead of peanut sauce, it’s served with a spicy-sweet soy sauce, a bit sticky. Much nicer in my opinion.
	Telor	Means egg. Can come in several varieties like “Telor Sambal Goreng” (the most common one, a spicy currylike sauce). I can’t stand hard-boiled eggs so I avoid them.
	Sayur lodeh / sajoer lodeh	Several different vegetables lightly boiled in coconut milk. Usually contains cabbage, green beans, carrots, and bean sprouts. Sometimes also tofu or tempeh. I like it but wouldn’t recommend it if you don’t like slippery veggies.
	Sambal goreng boontjes	My favourite vegetable dish ever. Green beans in a sort of coconut / chili pepper stew. But the green beans should still be chewy instead of mushy. Sometimes they get it wrong and then I’m really disappointed.
	Atjar	Pickles. Atjar tjampoer is mostly cabbage and carrots, and atjar ketimoen is mostly cucumber. Vinegar which means I stay away from it, so no idea what it actually tastes like.
	Tempeh goreng	A pressed soy bean product. Cut in small pieces and fried in a spicy sauce. Very peculiar, sort of sticky texture, spicy and sweet taste. I really like it.
	Krupuk / kroepoek	Prawn crackers. Can be a bit odd at first because the air bubbles in the crackers sort of suck on your tongue. OK, that sounds weird. But it is actually quite a funny feeling. Like cheese puffs.
	Seroendeng / serundeng	Toasted shredded coconut with sugar and spices
	Pisang goreng	Battered and deepfried banana. Nothing wrong with that.
	Spekkoek	Cake made out of extremely thin layers of vanilla and a sort of spice cake batter. Moist and sweet, but not overly so. Texture is almost like pancakes. If you are not so sure about wanting to try Indonesian food, at least try this. It’s spectacularly yummy and it’s a lot of fun trying to peel the layers apart even though other people will think you’re weird for doing that. But who cares. 😉

Related articles

• Rijsttafel revisited (autisticook.wordpress.com)
• Basic “Rijsttafel” (gonsfoodcorner.wordpress.com)
• Different Perspectives: Dining Out (inneraspie.blogspot.com)

America’s Medicated Kids

I didn’t know Louis Theroux had done a documentary on this subject: young children who get put on drugs for mental disorders. I have to admit I’m sort of scared to watch it, because either Louis Theroux is going to agree with the parents and take a huge fall off the pedestal I’ve put him on, or he’s not going to agree with the parents but it’s all going to be hopeless anyway as long as we keep seeing these children as problems who aren’t trying hard enough to fit in.

(I watched the first 5 minutes and so far I’ve already spotted the first professional saying of a 10 year old autistic boy that he’s improved so much because he makes more eye contact now. Seriously. Out of all the issues to focus on).

Update: since posting this, I have to admit I’ve adjusted my opinion on this issue. Yes, I still think people medicate too quickly and for reasons that have nothing to do with the kid’s wellbeing and everything to do with the world this kid is supposed to live in. The documentary gives a few poignant examples of that.

However, on the other end of the spectrum are kids like Charlie. Charlie feels better on meds. After reading his story and the way his parents have tried so hard to get him off meds, I have to say that yes, this sounds like a good solution for him (of course I don’t know him personally and I am not his therapist, but the story describes very clearly how Charlie’s wishes on the matter were listened to and taken into account).

So that means I was wrong to judge so harshly. I encourage you to read the blog at Outrunning the Storm and to watch the video here and make up your own mind. My opinion on the matter is not really that important. The important thing is to keep trying and keep questioning and never accept someone else’s ideas as a matter of fact UNLESS THEY ARE THE ONES AFFECTED BY THAT IDEA. That is all.

A day in the life

9:15am
That’s nice. Cat has allowed me to sleep in for a change.

9:20am
Get dressed in clothes I remembered to pick out yesterday evening (based on criteria of cleanliness and making me feel confident and pretty enough to go to outdoors festival thing). Feed cat. Check to-do list and remember to put on deodorant.

9:28am
Make tea and remember to have breakfast. Yay me! Another item off my to-do list.

Toast with prosciutto and mozzarella

9:35am
Spend 5 minutes agonising over what to do with my hair. I should have made an appointment at the hairdresser’s about 2 months ago. At least I took a shower yesterday so don’t have to worry about hair also being greasy.

9:45am
Check bag for necessary items (purse, keys), put jacket on and go to bicycle shop. I want to exchange the second-hand bicycle I bought there for another one because I don’t like the tires on this one, they make me fall over when I try to turn a corner. I should have done this the week after I bought it. It’s now been 3 weeks.

9:47am
Discover the bicycle shop is still closed. This upsets my schedule. I need a bike before 11:00am.

9:52am
Nice man from launderette next door notices my trundling back and forth and tells me bicycle man is on his way.

10:03am
Bicycle man arrives and I explain why I’d like to exchange the bike I bought from him. He asks me for the receipt. I reply that I’ve lost it but if he needs it I’ll go back home and look for it, no problem, I understand, I’ll go home now then? I think my voice sounds fairly panicky. He says it’s ok, he remembers selling me the bike.

10:23am
Finally manage to choose one bike from all the ones he has for sale. I should take my time and consider all the options but I feel like I have to make a choice. And this one looks nice and it’s more expensive than the old one which sort of makes up for my guilt about returning it weeks later and without a receipt.

10:26am
Get home and realise I’m 34 minutes ahead of schedule. Make more tea and read some blogs.

11:03am
Look at clock and notice I’m now running late. Oh bugger it. Check bag for necessary items (purse, keys, phone, sunglasses, sunscreen, deodorant, scissors, plasters). Tell cat goodbye and cycle to train station on new bicycle.

11:10am
Spend next 10 minutes trying to wrestle bicycle up and down train station staircases to get to correct platform. Luckily the 11:25am train is late.

11:25am
The announcer says something something mumble something 11:25 train to Amsterdam will depart mumble mumble. There really are a lot of people on the platform. Why can’t they shut up so I can hear what the announcer says? Panic slightly, then tell myself fuck it, if train departs from a different platform I can simply take the next train. Relax.

11:32am
Train arrives. I’m not going to be in Amsterdam at 12:00pm. And I don’t have a hand free to text or call my friend to say I’m running late, because the train is super crowded. As in, we’re standing on the balcony. With three bicycles. One lady in a wheelchair. 8 Spanish tourists. And a very loud hen party, 3 of whom are trying to find the toilets.

Empty train balcony (photo by Recensiekoning)

11:57am
Arrival at Amsterdam Central Station. I’ve reached the point where every time one of the hens screams, I screw my eyes shut and hunch my shoulders. I know this makes me look like a nutter. I don’t care. I just want to get off. When the doors open I manage to hoist my bicycle out without tripping, falling down the gap between the train and the platform, crashing into someone else, or making a complete idiot and/or nuisance of myself. Victory.

12:04pm
Realise that my headlong flight out of the station has been in vain, because I need to go back in and find an ATM. Fuck. Do I have to?

12:12pm
Finally on my way. Bliss. Sunny weather, bicycle. I’ve lived here long enough to know the fastest ways to get somewhere, but also the quietest and most scenic ways. Guess which one I’m taking. It’s beautiful out here.

12:24pm
Arrive at beer festival location which is a farm out in the middle of nowhere. Not that many people here yet, which is why I wanted to get here early. Lots of choice in food and beers. Start feeling panicky again because there is no leaflet listing where to find what. I don’t like having to make a choice while people are looking at me expectantly. I don’t know what I feel like having. I end up having a low alcoholic beer from the last stall in the line up because it’s set up under a large tree and the dappled light is soothing and they look like nice people and I don’t want to walk back because people might think I’m being rude. Their beer turns out to be very nice.

12:30pm
Friend arrives! I always feel less conspicuous in company and this is a close friend who knows I’m dealing with the autism stuff right now and who is the first of my offline friends to know about this blog.
*waves at offline friend*
Spend next hour or so just talking and trying out food and beers. Having fun! Also take some new pictures for blog header.

14:00pm
Small anxiety spike because ex shows up. I get along OK with ex but he always says very rude things about good friend. I don’t know how to deal with that. Decide to try and focus most of my conversation resources on friend and not worry about being rude to ex, because tough titty.

14:30pm
More people arrive. Another good friend joins group. Getting more crowded. Still having fun though. Although the music is a bit distracting. Maybe I should pace myself. But I’m having fun!

15:00pm
First friend has to leave because he’s having people over for dinner. Awww. It’s now getting so crowded that someone has to stay with seats at all times to prevent them from being taken by others. Sun is also getting very hot. Decide to move to a quieter spot with ex and other friend. Turns out quieter means less crowded, but louder music. Still having fun though!

16:00pm
Can’t remember much from this point on. People. Sunlight. Music. Talking everywhere.

17:00pm
Realise I need to go home. Well, should have gone home about 2 hours ago. Another friend is here and he’s doing this spiel with my ex about therapists saying I have no right to decide what’s best for me because well, autism obviously means I’m not capable of coherent thought and it’s really funny. But I notice my responses are getting flatter. So I should probably head home.

17:35pm
Actually say out loud to my friends that I should probably head home because I’m getting tired. Say goodbyes.

17:50pm
Cycle back to train station. Still gorgeous weather and gorgeous scenic route. Very nice. More traffic on road though. Have to pay attention.

18:04pm
Decide that it’s more practical to leave my bicycle across the water because that’s where I can pick it up when I cycle to work. Take the ferry behind the station to drop off my bike on the other side. Am fast enough locking my bike that I can take the same ferry back. Score!

18:24pm
Take more pictures for blog header. Realise I’ve just missed the train back.

18:36pm
Next train arrives. I get a seat to myself. Not for long. Two minutes later I get joined by four boisterous males in their early twenties. I know this because they proceed to talk about their own ages, the ages of the girls they could be dating, and the age of the boys their sisters are dating (one of the sisters is dating a Russian who is 5 years older than her and whose parents have a speedboat and a dacha on a lake somewhere), for the next 25 minutes. I feel old when they start talking about a girl born in 1996. I’m honestly trying not to pay attention and to concentrate on what I’m reading. But I can still recall most of their conversation a day later. It isn’t even interesting. How fucked up is that.

19:02pm
Thank god I can get off the train. Oh. Just thought of something. Bugger. Because I took my new bike to the station this morning, and that new bike is now in Amsterdam so I can use it for my work commute, I don’t have a bike here at the station to get home. Will have to take bus. Bugger McBuggerypants.

19:03pm
Call friend in UK while walking to bus station because this is usually a good time to reach him. Talk on phone for what probably amounts to an hour. I think. Somewhere in that time I must have gotten on a bus and got home. No idea what time though. I think I might be talking too loudly on the phone. In English. People probably hate me. I always hate people who talk too loudly on their phones when on the bus. And instead of talking about my day so I can start calming down, I talk about all sorts of things that are among my special interests right now and I’m getting more and more hyper by the minute.

20:10pm-23:00pm
No idea. Complete blank.

23:00pm
Realise I’m really really tired. Go to bed. Read for half an hour, then turn off lights.

00:15am
Still awake.

2:00am
Still awake. Images from day still going through my head. Reliving conversations. Not in an anxious or worried way but I keep going back to things. Can’t let it go. So tired.

2:15am
Give up trying to fall asleep and start reading book again.

4:15am
Turn lights off again. Fall asleep.

5:30am
Wake up again. Go downstairs to get some water. Fall back asleep after about 10 minutes.

7:02am
Get woken up by cat biting my foot because his food bowl is empty. I love my cat. Honestly.

Are you coming? I’m HUNGRY.

Yes, I’m sure

It’s taken me some time to get around to writing this. But I need to write it down, and do it well and concise and understandable and logical and open and as vulnerable as I can bring myself to be. Because this Tuesday I’m scheduled to have my last intake interview at the mental health clinic. Where they are going to tell me whether in their opinion I am autistic enough to get help. Or I should just accept whatever help they are willing to offer me, even if it’s treating the symptoms and not the cause. Or maybe I’m just a big crybaby who should go home and try harder.

To the person doing the interview,

When your colleague called me three weeks ago to tell me that the team wasn’t yet of one mind and that’s why you wanted to schedule another interview concentrating on my social interactions and the possibility of depression, I felt very angry. I understand that you want to be thorough in your approach and I support that. But I am very much afraid of not being taken seriously and not being listened to. That is why I am giving you this letter, instead of addressing these concerns verbally, because I have less trouble articulating myself on paper than I do in person, especially where emotions are concerned. And this is a very important and emotional subject to me. I hope you understand this. I would appreciate it if you read this letter through to the end before commenting, but please be assured that I will do my best to answer all questions and comments you might have afterwards.

Core problem

I am functioning at a reasonable level without any supports, except for the fact that I have been fired or otherwise let go from 8 of the 12 jobs I have held in the past 13 years. I have a university education (although without a degree), which has enabled me to work in professional or near-professional level jobs. I have never had formal or informal complaints from supervisors or coworkers about the quality of my work, meeting of deadlines, or other work-related issues.

Instead, in the cases where a reason was given for dismissing me, it was always along the lines of “stubborn”, “impossible to work with”, “doesn’t listen”, “undiplomatic”, “devious behaviour”, “untrustworthy”, and so on. This was never addressed during my employment, or not in such a way that I saw what was happening and could anticipate and address problems arising at work. Every time I’ve been dismissed, I was taken completely by surprise.

I do not have any problems or complaints in other areas of my life that pose an impairment to my current functioning.

Depression

I understand that you wish to talk about depression. I do believe this is a logical request related to the suicide attempt that I have listed on my intake form. However, as discussed with your colleague in the previous interviews, I do not have any complaints or feelings of depression. My attempt was over 15 years ago, and I haven’t had any suicidal or depressed feelings since. I do not feel it has any bearing on the core problem I have sketched in the paragraphs above. I hope you can see why I feel this way.

Other concerns

As mentioned, I don’t experience other significant impairments. However, there are several traits that I feel might be related to my core problem, based on the official diagnostic criteria for autism and keeping in mind specific development in not previously diagnosed adult women. “Often” in the below context means more than once every two months. “Occasionally” means around once or twice a year.

• Social interaction
  • I often get told not to take everything literally
  • I often get told how naive I am
  • I often get told that I said something very rude without realising it
  • I often get told I sound authoritarian or overly sure of myself
  • I often get told my spoken and written language is overly correct and formal
  • I often have trouble identifying emotions in others
  • I occasionally get told off for inappropriate copying of other people’s words or mannerisms
  • I often get told to smile more
    
    

    This is my smile when I practice a few times

    

    This is my smile when I don’t pay attention
  • I often get told smiling at that particular moment was inappropriate
  • My mother often told me when I was a child that my face and posture were unresponsive
  • I am often able to repeat an entire conversation word for word, but have no idea what kind of facial expression the other participant(s) had during the conversation
  • I occasionally get confused about who is currently speaking when talking to several people in a noisy environment
  • I often get confused when someone asks me “how are you?”
  • I often have no idea how to maintain my side of a social, informal conversation that does not revolve around the exchange of pertinent information
  • People often have to tell me specifically that certain information is restricted or sensitive or private.
  • I often get told I come across as uninterested in how other people feel or what they say
  • I often get told I come across as intensely focused and interested if the subject of conversation matches my interests
  • I occasionally get told I appear obsessed with people in the early stages of a friendship or relationship
  • I often have trouble maintaining friendships
  • I often don’t realise someone doesn’t like me until someone else tells me
  • People often don’t laugh at my jokes
• Restricted interests or behaviours
  • I have (and have had as a child) several intense interests that do not match peer or age appropriate interests
    • I never got the hang of colouring outside the lines. That was what the lines were for.
    • I liked calligraphy although I never really got the hang of it. I settled on typography instead. At age 9.
    • I created passports for all my Fabuland figurines so I’d know how they were related to each other. I included imagined genealogies and “passport photos” I’d cut out from toy catalogues.
    • Another hobby from around the age of 10 was drawing detailed floor plans of fictional houses.
    • On holiday, one of my favourite pastimes was to look up German license plates we saw on the road and see which city they came from. We had a list in the back of our German road atlas where I crossed off the ones we’d seen.
    • I collected rocks, shells, bits of pottery, stickers, postcards, pressed flowers, things with cats on them, colouring pencils and crayons, buttons, beads, coins, and stamps. I adopted my dad’s match book and sugar bag collections. I still collect stamps and still haven’t found the courage to get rid of my buttons and beads. Or my foreign coins, come to think of it.
    • I have had the entire script of “Monty Python’s Life of Brian” memorised since around the age of 13. Yes, I made that website. It’s horrible and I made it a few days after I taught myself HTML.
    • When we watched “I, Claudius” at school when I was 14, I made a complete genealogical tree listing all the characters and their relations to each other, for fun. I had read the book by Robert Graves (in English) but I also got Suetonius from the library to use as source material. I took the tree with me to class.
    • By age 16, I knew the lyrics to around 150 Beatles songs by heart, and to nearly all the songs Ella Fitzgerald has sung (and I can sing them, too).
    • When the student I was partnered up with – to do a tour of Bernini’s sculptures in Rome – forgot to make a photocopy of the notes I’d given him, I did an improvised tour instead by narrating the Greek myths the statues were inspired by. I’d watched The Storyteller a lot.
    • I am not a complete Star Trek geek. I just know the general storylines and names of all the main and most of the secondary characters – up to Voyager – and I’ve probably seen most episodes more than three times. I also like to read articles on Memory Alpha for fun.
    • At the age of 35, I methodically and systematically changed my fashion awareness. I bought over 50 pairs of shoes in less than 2 months to make sure I had a pair in every necessary colour and style. Those were not impulse buys to make myself feel good, or behaviour that I was unable to control. It was on purpose.
    • I often get referred to as “the walking encyclopaedia” for my love of trivia and extensive knowledge of facts and figures.
    • I know everything there is to know about ingredient lists and additives and cheap substitutes for proper food and will gladly bore the tits off anyone about nutrition.
    • I need to have my books sorted first by language, then by alphabet. No exceptions. I have held discussions with friends on how to properly organise my books.
    • I have taught myself electrical engineering.
    • I have taught myself HTML.
    • I have taught myself Italian. Although not fluently.
    • In many of the online games I play, I’ll be the one making the list of all the player coordinates on the map. Or the list of quest items my alliance needs to collect. Or the Excel sheets with formulas to track character development.
  • I often have trouble moving on from a project when it’s not “finished” or “perfect” yet
  • I love watching things spin, like the washing machine
  • A visual break in or deviancy from a pattern can make me feel physically uncomfortable. (Especially #3, #7, #14 and #19).
  • I am hyperreactive to auditory, tactile, olfactory and visual stimuli
    • For as long as I can remember, I have twirled or stroked my hair or stroked my own clothes to comfort myself.
    • I can’t sleep when there’s sand or crumbs in my bed. I’ve been told not to make such a fuss by others. Princess and the Pea style.
    • Occasionally the tags in my clothes, or a seam that rubs against my skin, can drive me crazy.
    • I can’t have a conversation while the TV is on or the radio is playing.
    • I often get laughed at for visibly jumping when something makes a loud or unexpected noise.
    • I don’t like bright directional light or overhead fluorescent light.
    • I get very uncomfortable with images shown in quick succession, or with lots of variation in orientation and tilt. Watching a Minecraft roller coaster video makes me feel ill.
    • I am very sensitive to strong artificial scents, like being able to smell other people’s laundry detergent and shampoo – not to mention perfume or aftershave (Axe/Lynx should be classed as a WMD in my opinion). I could do this even when I was smoking two packs of cigarettes a day. It’s worse now.
    • I used to be a very picky eater, now it’s only vinegar that makes me physically ill. And hard-boiled eggs.
    • Even as a baby I refused to drink cow’s milk. My mother weaned me off breastfeeding when I was around 10-12 months old and I haven’t drunk any milk since.
  • I have not-so-good spatial awareness and proprioception
  • I often get called clumsy
    • I drop things daily
    • I often cut my fingers or hit myself accidentally
    • I often walk into things
    • I often have bruises on my legs and arms that I don’t remember getting
    • I occasionally fall backwards without any particular reason
    • I have to be very careful when going up or down the stairs, I trip easily
  • I used to have problems with fine motor skills as a child
    • I have very good handwriting now, but I still hold my pen “the wrong way”
  

  Does this look like good handwriting?

  

  Does this look uncomfortable?
• Other
  • I often do not hear someone speaking to me when I’m focused on an activity, like reading a book
  • I often have executive dysfunctions in the following areas
    • Personal hygiene
    • Finances (paying bills according to priority)
    • Domestic maintenance
  • I’m often anxious about social interactions
  • I’m often overwhelmed by sensory input
  • I have strengths in the following areas:
    • Attention to detail (for example proofreading, I can spot a typo from a mile off)
    • Problem solving and analysis
    • Very good phone voice. I didn’t get a pleasant voice by accident. It takes concentration and practice.
    • Not letting angry customers “get to me”
    • Scripting customer interaction
    • Writing user manuals
    • Highly acute sense of fairness and honesty
    • Very loyal
    • Love to learn new things and apply knowledge in new ways
    • Getting along with programmers

In summary, I don’t feel very impaired by these traits, but I do think they shouldn’t be seen separately from my core problem.

Related articles

• Are you sure you’re autistic? (autisticook.wordpress.com)
• DSM-5: Autism Spectrum Disorder diagnostic criteria (autisticook.wordpress.com)
• ICD-10: Pervasive developmental disorders (autisticook.wordpress.com)

Playing with pictures

So I’ve finally gotten around to creating some header images to liven up the place.

Some flowers I bought last Wednesday to celebrate one week of not smoking. I edited the photo quite heavily in GIMP to get the vibrancy of the colours, because apparently my camera hates vibrant colours and makes everything look washed out. The flowers are really that beautiful shade of orange/red. Although of course a lot depends on your monitor as well.

Picture I took some time ago, cracked safety glass. You can’t really see it here but when it’s in the header, you can see small colour refractions especially on the right hand side. Plus I like the spidery pattern.

Spices! Well, I love to cook, especially Mediterranean and Middle Eastern food. I really like the textures and colours in this picture, I wish you could also smell it!

A close-up of my bookshelves, one of many many bookshelves. I have a bit of a book problem. But who cares. These are pretty close in height and all paperbacks and I loved the progression of colours so that was a nice shot to take.

A close-up of my window sill. I have some vases and things standing in my window sill because I read somewhere that women are supposed to collect knick-knacks and put them in random spots to “make the space more personal”. So I’ve been experimenting with that. It seems to reassure visitors and I like the colours but it is a bit of a mess. The hands belong to a very pretty wooden statue from the 40s or 50s that I inherited from my grandmother. The number of times I’ve knocked that statue down and broken its neck… Clumsy, me?

I think the books and the window sill are my favourites because. Well. Rainbows. I really am helpless when it comes to rainbows. That’s why the gay pride flag is so awesome. And why autistic pride day is so awesome.

Shame

This article has been reprinted with permission on We Are Like Your Child.

I want to test a theory. The theory of shame going away when it’s out in the open.

I seem to have this thing. Which could or might possibly be related to decreased pain sensitivity. Or maybe executive function.

I don’t feel my bladder getting full. Usually the first signal that really gets me to pay attention is “bladder completely full cannot hold it need to find toilet within next 30 seconds!” Mad scramble for toilet ensues.

That or peeing myself.

© Bartlomiej Zyczynski – Fotolia.com

I’m 36 years old. I’m a pretty successful career woman (I can still bluff my way around the gaps in my resume). I have bought a house on my own (mortgaged of course, but still). I have a small but close circle of friends. I’m close with my family. I’m highly verbal. If I wanted, I could easily be seen as a shiny Aspie.

And the last time I peed myself in public was 6 weeks ago. And I don’t mean a few dribbles. I don’t mean “bit of incontinence, here’s some Depends”. I mean not being able to stop until my bladder is empty. Thank god this time the train platform was fairly dark and I was wearing a skirt so only my shoes got soaked. Made a nice squishy sound when I walked away from the puddle in the hopes that nobody would see.

Have I forgiven myself for not being able to feel my bladder until it’s bursting? Oh, years and years ago. It’s just a thing that happens. I can’t do anything about it except frequent toilet breaks even when I don’t feel like I have to go, and sometimes I simply forget to do that. It’s part of being me.

Do I still feel absolutely mortified when I pee myself in public? Does telling this story make me cringe? Did anyone here reading that story feel embarrassment on my behalf? Or even disgust?… Yeah, thought so.

But I’m glad you listened.

Edited to add some background:
When I wrote this, I was incredibly angry. Angry at the idea that shame was just some silly notion that would disappear as soon as it got examined. So I wanted to prove that there were some things that would not be less shameful when brought out in the open, because it wasn’t irrational to feel ashamed of them. That it was actually normal to feel ashamed for wetting myself as an adult.

But now I feel pride. Pride that I had the courage to come out and admit that there are some things that will always be a problem for me. Pride that I was asked to publish my story on We Are Like Your Child, which is a blog full of articles by bloggers I very much admire. And pride that maybe, just maybe, someone else out there will read this and find some consolation and courage in here too. Bless you all. Wetters and non-wetters alike.

Guess that means I’m doomed *giggles*

Related articles

• The One Where I Talk to Myself About Shame (musingsofanaspie.com)
• Just Another Post About Shame (feministaspie.wordpress.com)
• Shame (aspergersandmeblog.wordpress.com)

Some questions for you

Yes, you. The person who reads this. I have some questions for you!

I have a little bit of background in websites and internet and that sort of thing. And one of the things I’m always very focused on is usability, the art of making a website nice for the visitor instead of the owner. I mean, I’m not an expert, but I know enough about it to catch the most common mistakes and to help people build better websites. But I don’t have any knowledge whatsoever about blog usability. So, I figured, I’m just going to ask my awesome reader panel. 🙂

1. Which of the following do you prefer?
   • A homepage with each post having a short introduction and a “Read more” link, which makes it easier to scroll through and see if there’s anything you’re interested in (this is what I have now)
   • A homepage with every post published in full (all information in one single glance)

    

2. What would you like to happen when you click on a link to another post?
   • Open in the same window or tab, so you have to use the back button (this is what I have now)
   • Open in a new window or tab, so before you know it you have 15 windows open

   Links to other websites always open in a new window or tab, by the way. It’s just the internal links I’m curious about.

3. What do you usually pay more attention to?
   • Categories and the top navigation menu (I don’t really have one at the moment)
   • Tags and the tag cloud in the side bar

    

4. I sometimes use smaller version of images and photos inside my posts. How would you like to look at the larger image?
   • Open as a new page, with the top navigation still there (this is mostly what I have now, although I’d like to be able to add the right hand navigation as well)
   • Open as a “pop-up” gallery which you can close with the little X in the upper corner (I have this sometimes for posts with multiple images)

    

5. Anything else that annoys the sh!t out of you every time you come here? I love honest criticism (yay! honesty! no unintelligible social scripts!) so please take this chance to unburden your frustrations.

I would love to hear from you all in the comments! And to make it even harder to resist, I’m going to call you all awesome again. I mean, look at this. YOU ARE AWESOME. 😀 *doing bouncy happy thing*

Cleaning in progress

About a week ago, I aired out my dirty laundry for all to see. (Sorry, there are so many phrases and expressions involving clean and dirty, I’m having a field day! Yes, I love language).

I thought you might like to know that I’ve made some progress.

The picture of the kitchen cabinets isn’t so obvious (bad photography), but the drawers on the right are honestly downright grubby. The door on the left has already been cleaned. I’ve also unearthed the bedroom floor from the strata of accumulated laundry and crisp bags. Still need to vacuum but I’m getting there. Lastly, the attic, because that’s where all the dirty laundry from my bedroom ended up. At least I know what needs to be done there.

I’ve been using a couple of methods to get this far. One method I got off Snakedancing and is called productive procrastination. This doesn’t really work with executive function fail, but for dreaded chores it works wonders (for me anyway). Whenever I ran into something that made me feel anxious about doing it, I procrastinated by picking up some clothes and bringing them to the attic. I did have to remind myself to only do small bits of procrastination.

Some of the other methods are from the comments section on Procrastination or Executive Function Fail? on Musings of an Aspie, which is a recommended read by the way. But the comments contain some very interesting observations as well.

Kathryn:

I find little bursts of doing cleaning stuff works best, and I mean “little” like spraying the counters with a water-vinegar mix while I’m nuking my coffee. By the time I’ve had my coffee, the water’s had time to loosen any gunk, plus there’s visual reminders (the counter’s wet, the spray bottle is out). Then it feels logical or part of a pattern to wipe the counters clean, in an “if-then” way.

That’s how I managed to clean the kitchen cabinets today. And the fridge door yesterday, by the way. While waiting for the tea kettle to boil. This helped a lot with pacing myself, I identified ONE thing that I could do on the spot and stopped as soon as it was done.

Lucy:

can’t have anyone over syndrome (spells out c h a o s )

Quoted that one because it’s hilariously spot-on. 🙂

waggermama:

for anyone with an android phone, I can really recommend an app called Regularly. I set household tasks and rather than set a date I can say the task needs to be done weekly/fortnightly/monthly/yearly and then it *gently* reminds me to do it.

I immediately downloaded Regularly from the Google Play store and so far it looks really promising. I did have a fairly large anxiety attack on Sunday evening after I started to add all the chores that needed doing, because THE LIST WAS JUST SO INCREDIBLY LONG. Granted, I did add things like “brush teeth daily” because I tend to forget that sort of thing.

Financial

Health

Bathroom

Kitchen

Bedroom

Livingroom

Outdoors

Where I got stuck at first is due date, which is always a problem for me, because I have this feeling everything was due yesterday. And then I panic. But as it turns out, in every task there’s also a thing called “Log”. And when you click that, you can say when (you think) you’ve done this task last. Which is far more convenient for me than to start guessing when I need to get it done. Based on the last time I did something, and how regularly I want to do it, the app gives a nice gradual colour scheme to each task. Which brings me to the second reason why I like this app: RAAAAAAAAAAAAAAAAAINBOWS. I really like colours sorted by rainbow. 🙂

Edit: the default colour setting goes from red to green. To get the red to blue rainbow colours, go to Settings > Color Range > Extended.

I’ve been using Regularly for two days now, and it gives me good clues on what my top productive procrastination should be, and lets me tick off random items from my “little bursts” cleaning list. So all in all, it seems to be working.

In closing, Nattily’s blog has a really awesome article that offers an in-depth analysis of procrastination vs. executive dysfunction vs. ability to do things “that are duller than, I don’t know, dull things” (with photos and coloured highlighters!). And Neurodivergent K’s blog has some very useful tips on how to “autistify” your surroundings to make things like cleaning easier to remember and execute. Also with photos!

Related articles

• A healthy mind in a tidy house (autisticook.wordpress.com)
• Procrastination of Executive Function Fail? (musingsofanaspie.com)
• Let’s Get Carried Away (notesoncrazy.com)
• Executive Function Support for Aspergers: Procrastination (snakedance.tumblr.com)
• Autistifying my Habitat! (timetolisten.blogspot.com)

Social scripts: a play in one act

Or, what happens when a co-worker wants to ask you a question about something work-related but feels the need to have some chit-chat first.

© pholidito – Fotolia.com

Co-worker:
hi, had a good weekend?

Autisticook:
yeah sure, you too?

Co-worker:
can’t complain, 2 nights north sea jazz and 2 birthdays on saturday

Co-worker:
so yes 🙂

Co-worker:
you done anything fun?

Autisticook:
north sea jazz, great!

Autisticook:
who did you see?

Co-worker:
err… do you have an hour or two?

Autisticook:
hahaha

Co-worker:
Friday Roy Hargrove, Diana Krall, Seesick steve
Sunday Nynke Laveman, Javier Limon, Marcus Miller, Ben Harper, Bonnie Raitt, and Sting

Co-worker:
all never seen before and all very awesome

Co-worker:
and some bits here and there from other artists

Autisticook:
yeah that’s how it goes at north sea, that’s what makes it fun 🙂

Co-worker:
indeedy

Co-worker:
you’ve been?

Autisticook:
i went when it was still in the hague but haven’t been to rotterdam yet

Autisticook:
so it’s been a while

Co-worker:
ahhh, i haven’t been for years either when it left the hague but it’s more fun than i thought even though ahoy [the venue, ed.] is so massive

Co-worker:
so simply go 🙂

Co-worker:
i had a question about that ftp issue…

© pholidito – Fotolia.com

What follows next is meant to be a funny explanation of how I process social cues, a bit like a fake anthropological article. It’s not meant to be taken 100% seriously although the tips and tricks will very likely work in real-life situations. If you can’t laugh at yourself, what’s the point? However, from some (non-autistic) reactions it appeared I was too subtle in my humour, that’s why I added this explanation. If confusion persists, I might have to resort to colour-coding the funny bits.🙂

I’ve developed my script for dealing with “how was your weekend?” because I noticed that answering truthfully wasn’t a socially acceptable option for me. Apparently neurotypical people get very uncomfortable when you say “I played computer games” or “I read a book” (well, actually 3 books).

Note the first strategy in line 4: deflection. Mostly, people who ask about your weekend do so for two reasons: because they think it’s the polite thing to do and because what they really want is for you to ask them about their weekend. So, deflect the question back to the other person.

Sometimes they don’t take the hint and will ask you again, as in line 10. In that case, deploy the second strategy: ask them specific questions about something they casually referred to in their first answer. In this case, I could have asked whose birthdays, and get them talking about their family or their friends. I picked North Sea Jazz because I have some specific knowledge about this so it’s easier to ask questions that will keep the other person talking. You can even volunteer some information but only do this if you’re absolutely sure about how it will be received. In this case, I mentioned I had been to North Sea Jazz as well because I know that people like having shared experiences (*). However, I didn’t mention that I stopped going because the crowds and the noise drive me bonkers. That’s too much information.

Keep on doing this until the other person gets to the question that prompted them to start a conversation or until they walk away. Neurotypical people don’t have hyperfocus and have a low boredom threshold so it usually doesn’t take too long. Good luck!

(*) Edited to add: This is only true for general locations or actions. If it’s talking about specific experiences that trigger an emotion within the NT, they will think you’re selfish for trying to focus the conversation on yourself. A safe course of action would be to keep on asking the NT questions or to only agree in short sentences like “Oh, me too!” or “I know exactly what you mean” when you’re not sure of the emotional content of the experience.

Related articles

• Institute for the Study of the Neurologically Typical (isnt.autistics.org)