Twirling my brains out

Stimming. Probably one of the most controversial of all autistic behaviours.

Man, people get upset about it.

On the one hand there’s ABA therapy which (as far as I’m aware) aims to analyse stimming behaviours and tries to modify or eliminate the ones that are classified as “non-functional” or “inappropriate” as much as possible. People saying that stimming means the autistic person can’t concentrate, or is not paying attention. Or that it makes others uncomfortable around the autistic person because it’s so obviously different. That to be accepted as “normal”, the stimming needs to be as unnoticeable as possible. That stimming makes autistic people the target of bullies.

On the other hand, there’s Autistic Pride. Loud Hands. The joy of stimming. The fact that it is a very effective way to self-regulate, especially when dealing with sensory processing issues or overwhelming emotions. The emerging notion that it actually helps autistic people with learning and getting better results in school. That trying to take away the coping mechanisms of the autistic person, increases the chances of a new coping mechanism popping up, one that might actually be more harmful because the autistic person couldn’t use a less harmful one to cope sooner. And the anger and pain that despite what others have said and maybe hoped for their autistic child, hiding or eliminating more obvious stims doesn’t truly help in getting accepted and not getting bullied.

Despite all the controversy, there’s still a lot of confusion over what stimming actually is.

When I first read about autism, I started looking at things in a new light. Things in my life that seemed to fit the description. I looked at experiences that I’d never linked together and suddenly things made sense to me. I was sure I was autistic.

But I was convinced I didn’t stim. It actually rather worried me, because I was afraid that without stims I wouldn’t be autistic enough to get diagnosed. Well, alright, I did have a tendency to get very bouncy when I was excited about something. But that’s not really stimming is it? Stimming is the flapping and the rocking, right?

And then I read somewhere that playing with your hair is a stim. And I thought, “Hey, I do that. A lot. Actually a whole lot. In fact, my mum was always telling me to leave my hair alone.” And then I read that Alyssa of Yes, That Too strokes the satin binding on her blanket as a stim. And I thought, “Mmm satin binding, that feels nice, I need to buy more stuff wi… Hang on. That’s stimming too? I do that.”

So. After reading that Alana of Sleep wake hope and then thought she didn’t stim either (hey, it’s not just me), I had this idea that maybe we need to put together a resource. A list showing all our unique ways of coping with our environment. A list that might help others recognise the same things in themselves.

Autistic people. But also neurotypical people.

Because everyone stims. And it’s so much more than just rocking.

If you think this is a great idea, please add your stimming behaviours to the list by filling in the survey above! It doesn’t matter if you’re autistic or not. They can be as normal or as odd as you like. The only criterium is that YOU feel it’s a stim. After filling in the form you will see a link to the survey answers so far. Who knows, maybe you’ll recognise some extra ones! In that case, no worries, you can fill in the survey as many times as you like.

I’m not entirely sure yet how I’m going to make the results permanently accessible, but I hope this will at least be an interesting start!

Edit: I’ve figured out how to link to the stimming survey results!

Crying

There was this moment when I had job coaching. I started job coaching because I’d gotten fired a few months previously, from a job I loved. And it wasn’t the first time I’d lost my job. And I figured maybe I could use some help figuring out why it always went wrong.

My job coach asked me to describe my wishes and goals. And somewhere along the line, I can’t remember how, I mentioned that all I really wanted was for my employer to accept me the way I am.

And I felt tears starting in my eyes.

The horrible thing was, my job coach noticed too. And she asked the dreaded question, “How does that make you feel?”

Please. Don’t ask that question. Don’t remark on the fact that you see the tears in my eyes.
I cannot cry. I MUST NOT CRY.

Not where you can see me.

I don’t know why I feel such a near-instinctive aversion to letting others see my vulnerability. It’s not reasoned out. As soon as I start feeling a “bad” emotion, my reaction is to STOP. HIDE. I feel bad about crying in private too, bad to the point where I will slap myself to stop crying. But when someone else is there it feels far, far worse.

I can vividly remember the times I sobbed like a child in a public place in the last 20 years. At the funeral of the mother of a friend of mine, when I thought of how the rest of the family would miss her (I didn’t know the woman at all). When I was managing a store all by myself and I had my first angry customer (I was 17). When a boyfriend broke up with me completely unexpectedly. All through the second half of the film “Once Were Warriors” (seriously unstoppable sobbing). When the manager in one of my jobs told me she didn’t want me to come back to work the next day, even though the company had offered me a permanent contract and we were in the middle of negotiations. When I was told in my last job, the job that I loved, that my putting in overtime to get the job done wasn’t appreciated. When I admitted that I wasn’t able to keep track of my finances and that I’d probably get evicted from my house very soon because of all the letters that were lying unopened on my bed. I mean the kind of sobbing that makes you gasp for breath. Buckets of tears. Uncontrollable.

And every time I felt so angry and embarrassed and awful that someone would see me like this.

It’s probably normal. Nobody likes crying.

But I never got that sense of “release” that other people kept mentioning. That I could “let it all out”. Crying just made me feel worse. Even when I cried in private. I just felt tired afterwards. But not relieved. It was all still there. Crying didn’t solve a thing.

And yet.

In the past few months, while I’m working on getting diagnosed, I’ve cried. I’ve cried so many times. Reading other people’s experiences. Their feelings. Their hopes. Their fears. I cried and cried and cried every time I recognised something. Something that touched on that idea of being accepted the way I am. So much crying. It’s always in private, but it’s a lot of crying.

I’m crying as I write this.

And weirdly enough, it doesn’t feel all that angry and embarrassed and awful. I haven’t slapped myself to make it stop. It’s not my idea of fun, but still. It feels a bit like at least it’s OK to cry. It’s a sad cry but also a happy cry. A forgiving and compassionate cry.

I cannot believe how much I’ve been crying.

And it feels like it’s going to be OK.

Normal is a bitch

A couple of days ago, I got an email notification about a new comment on one of the blogs I follow, Feminist Aspie. Feminist Aspie has written an excellent rant about neurotypical privilege and the constant misconceptions and prejudice about autism that she has to do battle with. Being made to feel like she has to apologise just for being herself is not ever an OK thing.

Someone had found her rant by searching for the word neurotypical, and decided after reading to leave a comment outlining their thoughts.

There’s a lot in there that’s extremely problematic, which is why I’ve decided to re-post it in its entirety. Trigger warning for victim blaming, ableism, and minimisation. And probably some other shit too. I’m not very good at the terminology, I just know wrong when I see it.

Ah dear.. I googled neurotypical and found this blog. I love to complain about my lot, but am only a tiny bit on the spectrum if at all. Also used to scream after loud bangs, managed to get out of it. Then there is the elevated amount of effort required to have (fake) normal conversation and body language. Someone wrote somewhere about how if you’re tired and forget to maintain correct body language there’s nasty consequences.. There is a certain extra effort in things, have never had arm flapping quite but a few other strange body language maneuvers I have had to un-learn. For me it’s not that there’s nasty consequences, just that I will not make new friends/girlfriends or win respect if I’m not conscious and careful with my body language and conversation. With language in particular, I tend not to naturally adopt cool, trendy language. Naturally more formal, but have to consciously and deliberately use certain cooler words eg “wanna go somewhere?”.

Why are all you guys wanting “a diagnosis” ?

It’s a pain.. I think I have been living in the “normal” sphere for ages and not ever acknowledged that it takes me a generally higher effort to do so than those who are actually born normal rather than having to learn it.. Ah well it has its advantages and perks too 😉 faster learning of technical shit and foreign languages so shouldn’t complain too much.. Have to take the good with the bad.

A have a suspicion that these autistic conditions are partially curable, since at 19 you would say I was definitely on the spectrum, but at 35 I have become so normal, it only rarely crosses my mind.

Oh yes.. This anger at “neurotypical privilege”. I do get rather angry when I feel that one tiny body language slip-up and a girl can lose attraction for me, or an interview can go to shit. Thing is, you can turn it around in a sociopathic way and say “if I fake it up well, they fall for it..”. Some people worry about the “judging..” of neurotypicals, but trust me you can outsmart them some of the time 😉 I wish I could do it more often and even the score!

~ Felix – August 30, 2013 at 7:45 am

It’s taken me a couple of days to line up my thoughts about this. My first priority was to write a comment on Feminist Aspie’s blog because my sense of social justice won’t let me get away with ignoring things that have the potential to be extremely hurtful and harmful for so many people. So I wanted to take the responsibility to publicly point out the flaws in their comment and not wait around for someone else to hopefully do that job better than I could.

And I tried to be polite about it, because who knows. They might mean well and simply not realise how much they’ve internalised all the ableism in society, the pressure to fit in and conform. So I tried my hand at validating because validation is important and it’s something I often forget and that makes people angry and less inclined to listen.

If you want to take a minute to read the polite version, go ahead. I’ll wait.

Or you can stay here and read the rude version.

“Ah dear”. SERIOUSLY? You start off by being condescending? OK, you might not be from an English speaking country and not aware of the overtones of the word “dear”. But I’m not from an English speaking country either. And this sounds very condescending to me. People who start any conversation with “Oh dear…” or “Listen, my dear…” are usually about to engage in a heavy bout of ‘explaining of things that should be obvious even to someone who is brain dead’. I should know. I do that a LOT myself.

“Only a tiny bit on the spectrum if at all”. That doesn’t really sound like a professional diagnosis, although I could be wrong because some professionals don’t like using the word autistic and try to explain symptoms away just as much as lay people do. But even if it’s your own opinion and not a professional diagnosis, that’s OK. If you don’t feel autistic, then far be it from me to criticise that. Even though you are criticising the hell out of everyone with a diagnosis all throughout your comment.

This next one is REALLY problematic, though. “Managed to get out of it.” “At 35 I have become so normal.” And the worst one, “A [sic] have a suspicion that these autistic conditions are partially curable”.

Here’s the thing. Brain flash: we are adults. We are not children anymore. Of course we are going to be better at certain things than we were at the age of 4. EVERYONE is better at certain things as an adult than they were at the age of 4. Like holding a f**king spoon. Autism is a developmental delay, not a complete inability to learn. Sometimes the things we experience the most “delays” in are the things that don’t really interest us and so we’re not really motivated to learn. Whoa, another brain flash: being slow to learn something you’re not interested in is true for EVERYONE as well. If you’re not motivated in some way to learn how to fix your own car, you are never going to learn how to fix your car, and you’re certainly never going to be GOOD at it. Autistic or not autistic.

Yeah, I am yelling. That’s because people who think autism can be cured make me want to stab things.

Again, just because we’ve learned how to do things that other people like parents and teachers thought were important for us to learn, doesn’t mean we’re less autistic than the day we were born. It just means we’ve learned to do something despite not being intrinsically motivated, usually because we got punished for getting it wrong. Like forgetting to keep our hands still. Or not looking someone in the eye. Or forgetting to put on deodorant (I still don’t think body odour, mine or other people’s, smells anywhere near as bad as using too much aftershave or perfume. But I’ve learned that other people think it’s important).

Don’t think for one second that punishment always takes the form of corporal punishment or getting yelled at. Sometimes it’s as simple as getting told that an intelligent child like you should be getting it right. Over and over. Until you start believing you’re stupid. You must be. Because otherwise it would be easy, right? Everyone says so.

So yeah. I learned how to do things other people thought were important for me to learn. Most of the time it took me a lot longer. I never got as good at some of those things as the other kids. But I learned. Does that mean I got less autistic? No. I just got better at hiding “problematic” behaviours and better at coping with the demands of the world around me. I realise that a lot of parents will consider that a success for their autistic child, but please, I beg you: always be mindful of how much extra effort it takes us to appear “normal”. And maybe consider putting in at least some of that effort into things that actually help us become happier, less insecure adults.

OK, back to the comment. “I will not make new friends/girlfriends or win respect if I’m not conscious and careful with my body language and conversation.” And later on, “One tiny body language slip-up and a girl can lose attraction for me, or an interview can go to shit.” And you call that no nasty consequences? Are you f**king kidding me? You’re saying you’re not worth getting hired, being in a relationship with, or even getting RESPECT unless you constantly monitor your verbal and non-verbal communication. I’d call those pretty nasty consequences. Not getting a job? Pretty nasty. Not getting respect? Not being treated like a human being? I’d say that is pretty much the CORE of nasty. Everyone is worthy of respect whether they’re the queen of Denmark or a person in an irreversible coma. Maybe you didn’t mean it like that but it’s what you said and probably what you believe on some level. That if you don’t behave “normally”, people will be justified in treating you like crap.

Christ. I’m actually starting to feel sorry for you.

“Why are all you guys wanting ‘a diagnosis’?” OK, not feeling as sorry now, because back to the condescending tone. (What on earth is up with the quotes around diagnosis? Still haven’t figured that one out). From your story I can’t really tell if you’ve ever gotten diagnosed yourself. You are 35 and would have been an adult or nearly so by the time the DSM started including symptoms for Asperger’s Syndrome. You are obviously committed to learning enough social skills to live in the “normal sphere” so I’m assuming you have enough verbal skills and motor skills to not worry about those two areas, unlike some with “classic” autism. So that makes it highly unlikely that you were ever diagnosed as a child. “At 19 you would say I was definitely on the spectrum” would suggest that you did get diagnosed at 19, though. So I’m not sure.

However. Just because you feel adult diagnosis “is a pain” and wouldn’t give YOU any benefits, does that mean that this should be true for everyone? How about some validation that doing some things actually does cost a bit more effort, not because you’re stupid but because you’re autistic? (Those two words are not synonymous, by the way). You’re obviously not expecting any acknowledgment from others that you don’t have it as easy as others, but does that really mean you need to judge other people for wanting a little bit of acknowledgement? Those two things, validation and acknowledgment, are usually at the heart of anyone seeking an adult diagnosis, the feeling of “it’s not my fault”. You obviously think that’s a pain. Well, if your way so far has worked for you, good for you.

Except that it’s turned you into a wannabe sociopath who wishes they could turn the tables on neurotypical people and “outsmart them” more often, so you can “even the score” and get revenge for all the times they’ve judged you.

SERIOUSLY DUDE. THAT IS SO NOT COOL. Treating neurotypical people as the enemy? Talking about outsmarting them and making them fall for your manipulations? Basically treating someone badly just because someone else who you perceive to be from the same “group” has treated you badly in the past? Dude. Not OK. AT ALL.

If that’s the side effect of telling kids to try harder to “be normal” and “fit in” and hide their autistic traits and punishing them for mistakes in body language and other things by insinuating they’re stupid for getting it wrong… Then what are we aiming for when we teach all those things?

A well-adjusted, passing for normal, shiny aspie who dreams of getting even? Or a stimming, smiling, weirdo autistic who is just happy being themselves?

I know what I’d like to be when I grow up.

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.

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.

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.

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

© 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

© 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

© 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.

Cognitive love

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.

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?”
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.

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 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. 😉

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.

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.

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
    • 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”

  • 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.

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 ;-)

Guess that means I’m doomed *giggles*

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.


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!

Are you sure you’re autistic?

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

Simple non-icky vegetable soup

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.

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.

Paying attention

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?

A healthy mind in a tidy house

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.

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!

Awkward pose

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.

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

Downward-facing dog

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.

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!

Words words words

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.