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Rijsttafel revisited

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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
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Cognitive love

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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.

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Leave your heart unlocked

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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.

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Smile

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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?”
smile-right2
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.

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Side effects

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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.

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Yay more pictures!

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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.

cropped-header-7.png
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).

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Tripping down memory lane

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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. 😉

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Rijsttafel

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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 Nasi putih White rice. Think that’s fairly trigger free with regards to texture and taste. Unless you don’t like rice.
Nasi Goreng 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 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 Daging rendang Looks terrible, but it actually tastes brilliant. Slow cooked beef in a creamy lightly-spiced sweet coconut sauce.
Daging Smoor 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 Daging bali Slow cooked beef (noticing a theme here?) in a very spicy sauce (made primarily with crushed chili peppers)
Satay 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 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 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 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. 😉
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America’s Medicated Kids

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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.

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A day in the life

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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.

Unknown's avatar

Yes, I’m sure

by

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
    • 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.

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Playing with pictures

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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.

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Shame

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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 ;-)

Guess that means I’m doomed *giggles*

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Some questions for you

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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*

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Cleaning in progress

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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!

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Social scripts: a play in one act

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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.

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Are you sure you’re autistic?

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Hyacinth starting to bloomTrigger warning: discussion of suicide

Autistic. Or Asperger’s. Or on the spectrum. I usually say autistic because it feels like I have far more in common with classic autism than most people are willing to see. My parents were not surprised when I mentioned Asperger’s. When I started to say “autistic spectrum disorder” instead, they suddenly became dismissive. They might be on the spectrum too, I don’t know but I have my suspicions.

Are you sure you’re autistic? I’ve heard this question a lot of times over the past two months. Ever since I started working towards getting diagnosed, it’s prompted others to do some diagnosing of their own. Sometimes I want to yell at them that if they were armed both with the experience of living this and with the literally THOUSANDS of web pages and articles and books I’ve read, I might take their opinion a wee bit more seriously. However, there is a social rule that says you’re not allowed to yell at your GP or your mental health care provider for being ignorant arses.

Yep. Both my GP and my mental health care provider have questioned the idea that I might be autistic.

Well, actually my GP said, “I don’t think you are autistic at all” and would only give me a referral to get diagnosed after two appointments with him and after mentioning that my mother said she’d always suspected me of having Asperger’s.

And at the mental health clinic where I’ve had two diagnostic interviews, they want to look deeper into depression.

Right.

Continue reading →

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Simple non-icky vegetable soup

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Simple soup with courgette

I used to be a very picky eater. Very. Between the age of 9 and 14 I only ate unsweetened yoghurt with granola (but only if it wasn’t too crunchy), spinach (but only if it was finely chopped and no cream added), toast with a kind of carpaccio (but only very thin slices without obvious rims of fat or sinews), and toast with margarine and semi-sweet chocolate sprinkles. I gradually branched out, but by the time I was an adult, the list of things I simply wouldn’t eat was still a mile long.

Only after I moved out and learned how to cook for myself did I start to appreciate foods that I’d never in a million years thought I’d like.

Example: onions. Horrible slithery things. I could always tell them apart from the rest of the food, even in a stir-fry or a stew. Soup was even worse. They seemed to float to the surface, waiting until I put my spoon in, and then ambushing me so I could never have a spoonful of soup without an onion in it.

When I no longer had someone putting onions in my food and telling me I wasn’t allowed to pick them out, I could relax and start to experiment with onions. First by cutting them in really really really tiny pieces. TINY. Cutting up one small onion easily took me 30 minutes. But that was ok. Nobody was staring at me. Nobody was making me eat it. If I didn’t like it, I could throw it out. The pressure was off.

And I found I actually quite liked onions. When they weren’t slithery.

To honour non-slitheryness, here’s my first recipe. It’s a very simple lightly creamy soup with not too much going on, taste or texture wise.

Stock cubes
Courgette (zucchini)
Beef ragout
The main problem here is the beef ragout. This is not ragu, as you can probably tell from the picture. It’s a mixture of beef stock, flour, and gelatine. I have no idea whether it’s available in other countries. The reason I added it is to make the soup a bit thicker and creamier so that the contrast with the texture of the vegetables won’t be as big. So you can also use another thickening agent like cornstarch if you have no idea what beef ragout is.

Ingredients

  • 1.5 litres (6 cups) of normal tap water
  • enough powdered stock for 1.5 litres (6 cups) of stock (in my case, 3 tablets)
  • 400 ml (1.5 cups) of beef ragout OR thickening slurry
  • 0.5 courgette (zucchini)
  • knife
  • whisk
  • 2 litre (2 qt.) soup pan

Preparation

If you are going to use a different thickening agent, prepare this first.

  1. Take the soup pan, add the water, and bring it to a boil.20130731_175851
  2. Dissolve the powdered stock in the boiling water. This takes about 5 minutes.
  3. Turn the heat low and add the ragout or slurry.
  4. Stir a bit. Don’t worry about lumps. Keep it simmering on a low heat.
  5. Cut the courgette in slices (as in the picture above).
  6. Stack a couple of slices and cut them in strips. Repeat until all the slices are cut.
  7. Get the whisk and vigorously beat the soup to get rid of lumps.
    If you’re clumsy like me, you might want to turn off the heat first and let the soup cool down a bit before whisking.
  8. Whisk some more. You really don’t want any lumps.
  9. Add the strips of courgette.
  10. Heat up the soup for 2 more minutes. The courgette should be warm but not cooked.

Serves about 4 people. Nice with toast or bread sticks.

The idea behind this soup is that the courgette stays firm instead of becoming gooey and slithery. Also, the strips are easy to see and don’t ambush your spoon. Courgette doesn’t have a very overwhelming taste and the texture is nice when it’s not cooked. At least in my opinion.

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Paying attention

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IMPORTANT. READ THIS FIRST.

In this post, I’m going to be looking at biological stuff. After I finished writing, I realised that this could be easily read as advocating for a “cure” for autism. Nothing could be further from what I want to say. I don’t want to be fixed or cured. “Cure” thinking has done and is still doing so much harm to autistic people, that it almost stopped me from publishing this post.

However, I think the link between depression, ADHD, and autism could still do with some examining. Maybe we’re all part of a really broad spectrum. Maybe we’re all differently wired in a similar way. Maybe we can be who we are without feeling horrible or being made to feel horrible about it.

Maybe we aren’t alone.

© fotovika - Fotolia.com

© fotovika – Fotolia.com

In an earlier post, I wrote about how important it is for me to do things that activate my reward centre. I speculated that the lack of achievement in housekeeping was the reason my reward centre wasn’t lighting up with nice juicy dopamine, and so I didn’t have enough motivation to do any regular housekeeping. This is how recreational drugs work, and sex, and food, and any other pleasurable activity: they increase dopamine levels which in turn activate your reward centre.

The reason why I was thinking about rewards and dopamine is because since about the beginning of June, I have been really struggling in several areas of my life. I started a new job after being unemployed for 10 months, I decided to quit smoking, and I got referred to a mental health clinic for an autism diagnosis. Maybe a bit too much to cope with all at once.

But was that all?

Normally I feel pretty damn good whenever I manage to actually do something, even in my bleakest moments. Look, I did the dishes! The rest of the house is still a mess and I haven’t paid the bills in over two months, but screw that, I did the dishes! I’m awesome! Now, that sense of pride seemed oddly muted. Was this depression? It didn’t seem to be, I was feeling very overloaded with work and smoking and autism but not necessarily sad or down. Overwhelmed, unable to deal with sensory stuff, pretty normal for me in that kind of situation. The muted feeling was new.

And then I made a brain leap. That’s how it felt. My brain jumped up and landed in a different spot. A spot labeled “dopamine”.

You see, I was a very heavy smoker. Think 45-50 cigarettes a day. So when I decided to quit, I asked my GP for varenicline because I’d heard good things about it and figured it would be the support I needed in overcoming my dependency. It worked like a charm, the first day I used it I was down to 23 cigarettes and after 5 days I smoked about 8 a day. Instead of 50. And it didn’t cost me ANY effort. I just didn’t feel the need.

How does this work? Well, nicotine, like other addictive drugs, makes your dopamine levels peak. So there’s an instant reward when your nicotine receptor gets activated. Varenicline prevents this reward by making the nicotine receptor less sensitive, and at the same time mimics a low level of dopamine so you don’t go cold turkey.

So I was weaning myself off my dopamine addiction. And lowering my overall dopamine levels.

And suddenly I didn’t like alcohol as much. I didn’t pay my bills. I couldn’t keep my house clean. I hid in my bedroom. I bought things I normally never eat, like crisps and chocolate and cakes. I had a very low threshold for loud noises and bright light. I nearly broke down at the thought of having to take the train to work. I couldn’t focus on my work as easily as I used to do. I began compulsively refreshing my Facebook feed and email and rapidly switching from one browser tab to the next. I started stimming heavily (whereas I could have sworn I didn’t ever stim. Nope. Not me. Not stimmy at all).

I started thinking that maybe there was a blog post in this. So I looked up dopamine on Wikipedia, googled some stuff. And then I stumbled onto this.

We usually think of dopamine as a chemical messenger that is related to things like reward or drug addiction. But more properly, dopamine signaling has to do with salience, how important something should be to you at any given time. Dopamine spikes are associated with the pleasure of drugs or good food or sex, but they also say “PAY ATTENTION TO THIS”.

This is from an article called The Dopamine Side(s) of Depression and it looks at several behavioral studies done with mice to look at how dopamine works. Go read it. It blew my mind.

Because besides the “Pay attention to this” effect – which I’m starting to think could be part of why sensory processing disorders, for example difficulty to filter out background noise, occur so often in autistic people – the research also looked at the role of dopamine in social defeat stress.

You take a normal mouse, and put him into a cage with a bigger mouse. The bigger mouse “owns” that cage. He’s a retired breeder and very aggressive. He will usually launch himself right at the poor intruder mouse, beat him pretty badly, resulting in a “social defeat”. The mice are usually separated very quickly so the larger mouse doesn’t injure the intruder, but the defeated mouse is partitioned off in the case, where the aggressive resident can still threaten and bully the poor guy.

The mice that were given high level dopamine stimulation showed signs commonly seen in 10 day social defeat (less social interaction with other mice, less inclination to engage in pleasurable activities)… after only 2 days.

Let me repeat that for you. The mice that were bullied and beaten up showed signs of depression MUCH FASTER after giving them high levels of dopamine.

Are we on to something here?

Depression. Hyperfocus or the lack of focus. Unable to filter sensory input. Decision making (assigning priorities). Even motor skills are commonly linked to dopamine.

But social behaviour is a new one for me.

Can autistic people simply be part of the large group of people who are differently dopamine-wired?

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Kittens!

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Kittens. Kittens kittens kittens.

Kittens!

I love saying that word. Kittens!

I’ve been singing the first line from “My Favorite Things” for days. Except that it comes out as “Lala la lala la lala la KITTENS!”

Besides. They’re FLUFFY.

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A healthy mind in a tidy house

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Time to come clean.

I can’t.

I’m rubbish at keeping my own house clean. That was an unintentional pun, by the way. Coming clean was intentional. Rubbish wasn’t.

I hide my rubbish. I hide this.

Living room
Heap of clean laundry that prevents dirty laundry from being done
Pile of cat hair I overlooked
View of the kitchen counter – there are more dirty dishes and cups stacked on the floor
Foot of my bed
Bedside table
The area between my bed and the windows

The funny thing is, I took these pictures after I’d already vacuumed and mopped the ground floor. I’ve sort of ordered them by progressive messiness. I hadn’t cleaned the ground floor in over two months. Had to do it now, because my dad is coming over to pick up some stuff this Wednesday. Can’t let him see how bad it is. I’m showing it to the internet. Can’t show it to my dad.

(The picture of the cat hair? My entire living room was like that. Upstairs is still like that.)

Another funny thing is that I’m actually pretty good at the physical act of cleaning. I know what to do and how to do it. I was a professional cleaner for two years. Old ladies with a life’s experience of housekeeping gave me compliments on how well I kept their house clean. I’m good at it. And very thorough.

Which is where the autism comes in, I suppose.

Not only do I have problems with executive function, actually getting to the point where I can start cleaning and not overanalysing all the things I need to do and becoming completely paralysed from all the choices involved, I also have a problem with doing a half-arsed job. I look at a household chore and picture what the end result needs to be. And then I want to make that happen. I focus too much on the end result. And with housekeeping that means I usually end up feeling either overwhelmed or like I haven’t accomplished enough.

Because housekeeping is far more about doing a little bit each day and not worrying about getting it “done”.

And I can’t do that. Once I start, I need to finish it. I need to reach that end goal in order to get my dopamine hit. My happy buzz. My sense of achievement. My reward.

So instead, everything about household chores seems designed to make me feel like even more of a failure than I already feel I am.

And that’s when you get those pictures.

There’s two reasons why I can finally be honest about this. Firstly, I hope this will make someone else on the spectrum feel a bit better about their own mess. You’re not the only one. There are many of us who struggle. When you’re struggling, it’s no good beating yourself up about it: you need to find other ways to cope. I’m still working on it, but I think that admitting to myself that I won’t get that satisfaction from cleaning, that I won’t need to do it perfectly because there’s no reward anyway, will help me in that.

Secondly, this is not the worst it’s ever been. The worst would need a trigger warning for contamination OCDs and probably a hazmat suit.

The title “A healthy mind in a tidy house” is a play on the Latin Mens sana in corpore sano, which means a healthy mind in a healthy body. This is taken to mean that a person is only healthy when he is occupied both intellectually and physically.

Update: I’ve managed to make some progress!

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Let’s talk cat

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I have a friend. His name is Guido. He likes a lot of the same things I do. He also likes to do things that I think are weird. But that’s ok. He probably thinks the same thing about me.

He is a cat which means his brain is quite small. He doesn’t spend a lot of time talking about abstract concepts. But he is very outspoken about things in the here and now. Like give me food. Or let’s snuggle. Or leave me alone. This makes it easy to know what he wants. I never have to guess or worry that he might say one thing but mean something else.

This is Guido. He likes sitting in plastic bags. He was purring.
This means happy

I like being friends with my cat even though our different abilities mean that sometimes it may seem a slightly inequal friendship. I get food for him, clean his litter box, and open doors when he wants to go out. He gives me headbutts and makes me laugh. But I know that he is here because he wants to be, not because he needs me. If anything, I feel slightly bad for wanting him to need me. After all, a cat can hunt his own food. So me choosing food that he can’t get by himself: that is my preferences making him disabled in that area. The same goes for his litter box. Just because I want him to use the litter box doesn’t mean he is less than me for not being able to clean the litter box that I want him to use. We both understand that.

Sometimes people joke about me being “crazy cat lady” for referring to my cat as a person. Which is silly. Because my cat is not a person and I don’t see him as such. He’s a cat. If I pretended he was a person, I’d be denying the things that make him a cat. So. He’s not a person, he’s not my baby, I’m not his mommy. But he is my friend, because he likes spending time with me. How else would you define friendship?

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Awkward pose

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While researching the second part of my yoga post, I came across a list of yoga poses that mentions “utkatasana” or Awkward Pose. Awkward. No kidding. That brings me to what happened after I overslept for my first yoga class.

After going through all the trouble of buying sports clothes, I wasn’t going to waste my momentum. So I planned a new appointment in the evening, figuring that would make it harder to oversleep (well, unless I was going to take a nap after work). Again, I was so grateful for not having to call but being able to simply book online. I probably would have had to rehearse the phone call in my head about 5 times before being able to call. If I would have done it at all. I know other people don’t show up for appointments too. But I have this rigid rule in my head that says it’s simply NOT OK and that’s why I need to have an excuse and sleeping late is not a socially acceptable excuse and oh my god ANXIETY. So, it felt good to avoid all that.

Tuesday evening arrives and I make my way down to the yoga studio. When I step in, there’s a big sign saying “no shoes” and an arrow pointing to an area next to the reception desk. There are other shoes sitting there. Good, I like clear instructions and this gives me something to do while I take stock of my surroundings. A white cellar with a round, low ceiling and no windows. This is the sort of location the city is famous for and it definitely has its charms, although in all likelihood it’s going to be very hot on this summer evening.

Example of medieval cellar (photo by Puur* events)

I say to the woman manning the desk that I’ve come for my first lesson, she tells me to go ahead and pick a spot. At the back I notice some people so I walk over there thinking maybe one of them will look like they could be the teacher. No, they are changing into different clothes and putting their bags in lockers, so I copy their behaviour. When I’m done doing that I turn around and notice nearly all the yoga mats are now occupied. I start getting a little bit anxious because I don’t know what is acceptable behaviour in a yoga class. Should I take the nearest mat? Does everyone have a favourite spot? Where is the teacher? What should I do? How can I avoid offending people?

As I slowly walk between the mats, trying not to bump into people doing yogaish stuff (meditating?), I notice that even the mat that I’d sort of picked out has a towel lying on it. Oh bugger. Full panic now. And then I do something that I’m still awfully proud of: I walk back to the reception desk and say to the woman: “I’m sorry but I’m feeling a bit overwhelmed. I have an autistic spectrum disorder and new situations make me anxious. Could you help me get started?” GO ME! You’ll have to imagine the flat voice, slight stutter and frowny face for yourself. However, she immediately says, “No problem! Come along, I’ll walk with you to the back where you can get your own yoga mat and then we’ll find a spot for you where you’re comfortable and can see what I’m doing.” So I guess she’s the teacher then. GO HER! This is all kinds of awesome.

During the yoga class I have several more moments where I get a bit overwhelmed, especially when the instructions are very verbal (like “stretch your left hand, bend your right knee, twist your body to the right while stretching out your right hand behind you and then twist your head to the left”. OK, I lost you at stretch your left hand. Which side is left again?). During the sun salutation, a classic flow of yoga poses that I used to love doing as a child, the instructions follow each other so rapidly that I freeze completely. But then I remember. This is yoga. It doesn’t matter if I can’t do it perfectly. I’ll get there in my own time. Breathe. Find a pose that works for my body, instead of frantically trying to figure out what everyone else is doing. Breathe. Stretch. Breathe. I wait out the sun salutations and start participating again when the class moves to the next pose.

At the end of the class, I’m very dizzy so I don’t get up when everyone else does. I’ll get there in my own time. I think this is the most valuable lesson yoga can teach me. The muscle control, the workout, and the stretching are just a bonus. And even with my imperfect execution, I already feel like the child I used to be, just enjoying the movement. Now I just need to find a tree to climb.

© AméliePoulain – Fotolia.com

Update: apparently the best tree for tree-climbing is in Wallington, Northumberland (UK).

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Downward-facing dog

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When I was young, my next door neighbour taught me how to do yoga. It was so much fun, especially getting into the flow of it, making each movement follow out of the previous one. I felt flexible and limber and not so clumsy anymore. Who cared that I was rubbish at sports like field hockey and volleyball and couldn’t even hit a baseball with a flat training bat? At least I could do yoga, and do it well.

Downward-facing dog yoga pose – © mocker_bat – Fotolia.com

But then something happened. I became an adult. And somewhere along the way, I stopped doing all the things that I thought were fun as a child. Hanging from tree limbs. Collecting stamps. Drawing fictional blueprints. Yoga.

I spent years telling myself that yoga was a perfectly acceptable thing for an adult to do. It was very hip. People were talking about it. All I needed to do was sign up for a class. Errrr… maybe next week. In the meantime, I could reap the benefits of having done yoga in the past. When I’d fallen down the stairs and had to have my spine and hips realigned, my physical therapist commented on my amazing breath control (I was breathing through the pain). I could also get up to all sorts of adventures in the sack (I could put my feet in my neck, ha!).

So now I’m 36, and working on my autistic spectrum diagnosis. It’s a rough road, full of surprises. Most of them are instantly recognisable and acceptable, this is how I am, this makes sense. Some are harder. And somewhere along the way, I came across an article that mentioned yoga and its benefits to people on the spectrum, especially with strengthening muscle control. So yes. I need to start doing yoga again. Never mind that my executive function right now is whimpering and hiding underneath the bed. I look for the nearest studio and they have online reservations (yay! I don’t have to call!), so I sign up for a class in two days. I also mention that I have ASD and that they can give away my spot if I don’t show up because it’s sometimes hard for me to keep appointments (the simplified version for neurotypical people).

The next day I start panicking because I haven’t managed to do the laundry for about a month. Showing up for a yoga class in dirty clothes is probably not ok. I can’t think of whether there’s anything clean in my wardrobe that’s suitable. So I decide to go out and buy myself some yoga clothes. That stops the panicking. I’ll have something to wear without having to do last-minute laundry.

(Which turns into frustration when I get to the sports clothes store and there’s no clear division between the different kinds of clothes. Training jackets and shirts and sweatpants and tennis shorts and tank tops all hang haphazardly next to each other. And there’s nothing that says “men” or “women”. I’m lost. I know exactly what I need, but where do I find it? This store doesn’t make sense. In the end, I spend about 2 hours going up and down the 3 floors trying to locate stuff. And nearly melting down with anger because after 45 minutes trying on different sizes of sports bra, it turns out that my assumption of my regular bra size being too small was wrong. The first bra I tried on was not a 34D like it said on the hanger. It didn’t fit because it was a 30B. That sort of thing drives me nuts.)

Anyway. Despite my executive functioning crisis, I have an appointment for a yoga class, and I have things to wear to yoga class. I’m feeling pretty proud of myself. The class starts at 9:30am the next morning, so I make sure to set my alarm for 7:30am, giving me time to wake up properly and get myself started.

So of course I oversleep.

Read on for Awkward pose – part II of my yoga adventures!

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Words words words

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I am so helpless like this. I need words.

My brain is locked. Where is the key? I think maybe smiling is the key.

Frowning makes it harder.

But I am frowning because all my words are locked up.

It’s not the fault of writing in English. My words are just as hard to access in Dutch.

In person I would probably not say anything.

It’s why they say autistic people are stupid. No words. They’re wrong. This is not stupid. It is disability.

Reading words makes it easier to find words. I am using your words to find my own.

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