I’ve always been kind of annoyed with my name for reasons I could never quite articulate.

It became easy to explain my annoyance, when I entered the English speaking universe, because my Norse name is a word used for something entirely else in English. Much to the mirth of many people I introduced myself to. Of course, every single English-speaking person whom I ever told my name (as in those who hadn’t been told my name before meeting me), said to me “Oh that’s funny, did you know that means [...] in English”. Well, gee no, asshat, I’m only fluent in English and have been studying at university for a few years, as well as having had this name since birth.

No really. You’re right, it could be that I didn’t know. I mean, it’s not like it’s such a funny coincidence that every single English speaking person ever has made the quick giggle and let me know how funny it is that my name is a word and that there’s a word in English that’s just like it. Wow. Or was it that you thought that everyone else had just been more polite than you and decided not to let me know? Because if that’s it, then maybe you’d be smart to consider politeness an option for yourself?

But no, by all means let your immediate and uncensored thoughts spill over and tell me how funny it is that my name is actually a name (in Danish, mind you, so maybe it doesn’t really count?) and not just a silly word in English.

And people say autistics are prone to blurting out impolite observations. Believe me when I say I always got the worst ones from allistic people.

Anyway. the above was my official reason for not liking my name. It was also my official reason for taking another name and adding it to my legal name. It made sense to people, because everyone can understand the annoyance at being laughed at.

But this was not the reason. This was never the reason. And while I didn’t know the real reason, I certainly did know that this wasn’t it. At best, the above scenarios made me fiercely protective of my name. They might even have made me really want to like my name, because damned if I’d let ignorant wannabe-jokesters ruin my good name. Literally.

Except it wasn’t them what ruined it. My name has never sat quite right with me. And I still don’t know exactly why.

But this is actually the first time since I got my diagnosis that I’m carefully thinking about this. And I have become more aware of my own responses to stuff.

The simply and perhaps silly truth about it is that my name sounds wrong. It feels wrong to speak it aloud. I can write my name with no problems at all. In text it works – as long as I remember not to read it to myself.

It’s when I speak my name that the truth will out. My name is a disharmonious discord of ugly noise in my ears. It tastes like mud on my tongue. Mind, I still don’t know why that is. But it certainly does explain why I don’t like it. And why I’ve never liked saying it. It’s not the name itself – I actually kind of like the name’s meaning and history – it’s the sound of it. Just the sound of it.

That’s… kind of unfortunate.

And I have no idea what I’d call myself in Danish instead of this name, so I’m sort of stuck with this one. Also: how the everloving fuck would I ever explain this to anyone?

We all want the same thing, why can’t we all just set aside our differences and work towards our common goal?

On the surface this suggestion seems innocuous and, well, really rather good.

However, when you look a little closer it turns out that what people usually mean when they say this is

I haven’t really listened to you, so I have not realised that what you want is not actually what I want, but I’d like for you to stop disagreeing with me and work towards MY goal, so I can get what I want.

Doesn’t sound half as great now, does it?

It comes so often from people of privilege, who think they’ve figured out that everybody wants to be like them. Or should be, anyway, because that’d be best for everybody. And since they perceive it to be best for everybody, then they cannot even imagine how someone would not want what’s best. They never bother to listen to those who would want something else. It’s really rather pretentious.

I’ve lifted a few choice quotes from comment sections and debates here and there to use them as example of what is the wrong thing to say or do.

We’re fighting for the same thing — acceptance of those with disabilities as people. Just people. Like any of us.

Are we really? How do you know this? You seem dreadfully unaware of what many of us people with disabilities are fighting for, yet you feel competent to pronounce our goals the same. How very arrogant of you. Now, I don’t know about your goals specifically, of course, but let me tell you about some of the goals I have seen outlined here and there.

Better aid for parents. Better support for parents. Better aid for partners. Better support for partners. Better support for hospitals/doctors handling multi-dx patients.

Those are all great, but none of those are my goals. There are plenty of people fighting for these things already, I need not add my voice to the choir. My goals are better support for the actual people with disabilities so that neither parents, partners nor professionals would be depended upon for something they cannot provide. My goal is aid and support which centers people with disabilities rather than their surroundings.

Acceptance of those with disabilities as people. Yeah, that’d be nice. But don’t you find it telling that you want us accepted as people – just people – without disabilities? That’s what so many of the people without disabilities want to do all the time. Erase, remove, cure, our disabilities. Fact is, they’re there, and they’re part of us, and if you insist on seeing us as ‘just people’, you’re also refusing to see us as people who have needs different than what society has deemed standard. This is not helpful. What IS helpful is to acknowledge our humanity at the same time as you acknowledge our disabilities and the different needs they might bring with them. Erasing our disabilities is erasing a (for many of us) central part of our identities. And most of us do not appreciate that, because it is, in fact, a violation. Erasing our disabilities also erases our rights to get help for those disabilities, so that is why many of us reject such erasure.

Why are we drawing lines and creating labels in the first place, saying things like “disabled community” like it’s some exclusive club, or debating the thin line between the metaphorical “voice” and literal “interpreter?”

I know it’s hard to grasp – it usually is for people of privilege – but words mean things. This is not something extraordinary that SJ activists invented. If you’re using the word ‘car’, everyone will assume that you’re talking about a car and not, say, a house or a dog. You use the appropriate word for car, because using the right words is paramount for understanding each other when we talk. Simple, really.

So when something like the “disabled community” is mentioned (gotta love the scare quotes btw), you’d think it was referring to the (or a) community of people with disabilities. Just like the black community refers to the community of black people and the LBTGQI+ community refers to the community of people with alphabet soup identities. Only when it comes to disability are supporters/allies considered members of the community – mainly because they made themselves members. How ridiculous would it be for me to demand ‘membership’ of the black community, because I do what I might to dismantle the privilege and power systems that make racism possible? Answer: VERY ridiculous. And completely unwelcome. I’ve actually seen this appropriative shit happen in trans-communities as well, when a partner of a trans person claimed to have a trans identity too, because she was partnered with a trans person – it was ridiculous and offensive there, and it is ridiculous and offensive in the disability community as well.

One thing is to support a group’s fight for equality, another entirely is to demand to be considered part of the group. One does not grant the other.

In hospitals hereabouts they have counselling services for cancer patients. And they have counselling services for the relatives of cancer patients. They are two separate services because those two perspective are not the same. Both perspectives are relevant, because humans tend to need fellow human sounding boards for dealing with life – as is perfectly natural. But they are separate, and they need to remain so. And as for the reality and the point about words meaning things: claiming to belong to the disability community, because you have a relative who has a disability is like claiming to be a cancer patient because you have a relative who’s a cancer patient. It’s all a big round of “no, you’re not” coming your way, and if you cannot see why this is, then you need to think back to why we say car when we talk about cars, and why we say dog when we talk about dogs. They’re not the same thing.

I can’t even understand why either side feels the need to separate the two.

We are not trying to separate the two. The two are separate, because they’re not the same.  The problem is that too many people are trying to make them the same. And that’s like trying to put dogs and cars in the same category and do so by arguing that they belong together, because they touch the ground in four places. They are separate, because they’re not the same, and those of us, who see that, object to the lumping together of two groups. But we are not the ones being irrational here, we are not the ones trying to make something into something it isn’t.

Self-advocacy is supposed to be about showing that you are capable of expressing yourself and your opinions, that you are another human being and deserve the same rights as every other human.

Thank you. All we disabled people need is for someone else to tell us what self-advocacy is about, how we should do it and what we should prioritize. I mean, it’s not like those of us doing it had any idea. Self-advocacy is not about showing that we can express ourselves as if we’re circus animals. It’s about actually expressing ourselves. It’s not about showing how we deserve the same rights. We don’t fucking need to prove that we deserve the same rights as everyone else. We’re HUMAN, THAT is why we deserve the same rights. And our ability to self-advocate should not even factor into this. The fact that some privileged people can actually write something like that quote and not even notice that what they’re saying is that we need to prove ourselves before we deserve rights is incredibly telling altogether.

And then they wonder why we don’t want to be lumped in with all of these ‘allies’.

I really don’t think it should be a strange thing that I (and others) do not want the kind of company in which we would first have to prove our ability before we’re considered deserving of human rights.

Why define yourself as disabled first and human second?

Welcome to not getting it. We don’t necessarily define ourselves as disabled first and human second. Some do, some don’t. Many of us define ourselves as disabled humans. Two things at once. Amazing isn’t it? The thing is, you want us to define ourselves as humans first and disabled second, when our disabilities (whatever they might be) simply cannot be separated from our beings and personalities like you seem to want us to. I’m a woman, too, and my identity as woman comes neither before nor after my identity as a person with disabilities. It’s there right along everything else. Why do you want to pretend that humans can be taken apart in neat little pieces and no part of them will ever want to go in two or more boxes at once?

What’s more interesting: why do you want to define us as human first and disabled second in a debate about who belongs in the disability community? Perhaps because if we’re humans first and disabled second then it’s easier to claim we don’t come first in the talks about disability? Because it makes it easier to pretend that actual people with disabilities are no more disabled then relatives of people with disabilities. I mean, we’re all the same if we remove all the labels except human, right?

This brings us right back to the “we all want the same thing” issue, because fact is we do not all want the same things. But if privileged people can freely ignore our disabilities and consider us human first and foremost, then it’s much easier to move on to assuming that we all want the same. After all we’re all human, that means we’re all the same. It’s when we start applying identifiers to ourselves that it turns out that we’re not all the same, and that’s why those identifiers are not open for everyone to use. Words mean things, and attempting to take over people’s identifiers is an attempt at taking over their cause and directing it yourself. That’s a hostile take-over, and it is not appreciated.

Why divide ourselves into ‘people with a disability’ and ‘people without a disability’?

Because society has divided us into those categories already. And no matter how you slice it, society treats people with disabilities different from people with disabilities. THAT is why they’re separate. Not until society stops making that distinction can we stop making that distinction in our advocacy. It really is that simple. We’re not dividing ourselves. People without disabilities are trying to co-opt our fight for rights, when in fact they have all the rights themselves. (that’s not taking into account intersectionality, mind you, so please keep that in mind).

I find it saddening and distressing that the “disabled community” is using their voices to strike out against those who are doing their best to support them.

Here, let me support you and help you by removing your agency and your right to self-determination. Let me support you by making sure MY opinion of YOUR life carries more weight then YOUR opinion on your own life. Let me help you by making sure you’re not actually viewed as fully competent.

It’s great that people are doing their best. It’s great that they’re willing to. But you know what? If “their best” amounts to kicking us in the face, I’d rather they do nothing. Nobody likes to be kicked in the face, and if you won’t accept that we do not want to be kicked in the face – even if you didn’t mean to – then you’re more of an ass than you give yourself credit for. Really. It doesn’t matter what people’s intentions are. They can still do some massive damage. Good intentions do not automatically make the support useful. Sure, I totally want to help my bro out with his music studies, but you know, I probably should keep my hands off his theory assignments, because I know jack about that, and my well-intended help would merely make sure that he failed. Intentions do not shield you against failure. For more on this particular aspect, please look up Kinsey Hope’s Intent post.

Good intentions means that we’ll be willing to tell you how you can help and avoid causing damage to us. If you refuse to listen, and if you insist that the damage we incur is not really damage, then you have forfeited your claim to good intentions.

The most amazing thing is that what surprises a lot of people is that autistics don’t all want the same things. (imagine that) Some of us just want to be left alone, because contact with the rest of the world is too much to deal with, and would it please just all go away? Some of us would prefer to get some aid for the few things we have the hardest time with and then otherwise struggle on to find a niche, where we can carve out a living for ourselves. Some of us would prefer to go it alone and never receive any help whatsoever, because all that meddling in our lives gets really tedious, really fast.

And this can actually be a surprise to people. Just like it can be a surprise to people that I am not like Rainman. A lot of people see autistics as a group of people who want and need largely the same things. Hint: we’re not. We’re humans with differing wishes, desires, ambitions, hopes, dreams and skills. And each of us want and need different things. This is a very, very important point, because before each of us can get what we need, it needs to be acknowledged that what Jim needs is not what Susan needs, and in order to find out what Jim specifically needs the bst place to start would be with Jim, rather than with “what autistics are like” and that same thing which we all apparently want.

The only thing we all need is freedom and space to find out the specifics of our individual needs, and we need others to listen to us when we’ve found it and respect our findings, even if some of us can ‘only’ express it by shaking our head at things we don’t want and smiling faintly at things we do want.

I have spoken before of my physical stims, especially my nail biting, and about the things that function sort of like a stim only with added items.

I have also covered my frequent escapes into my inner worlds.

Sometimes escape to a different reality is not a viable option. Say for instance when there’s something you really need to do, like have a meeting with your case worker. You do need to be present for that. More than just bodily present. Having your mind with you there is also necessary. Other things like job interviews, job activities, navigating traffic, are also elements of ordinary life that we can’t just skip out of.

Additionally, I spoke of how a stim needs to match that which it’s supposed to help against, and that makes it very hard to stim for emotional triggers. Because how the hell do you stim emotionally?

Well, it’ll probably be different for everyone. Usually my nail biting works for emotional stuff and stress, too. But if I’m in a meeting, I can’t sit there with my fingers in my mouth gnawing away at them. So I needed something else. (Also because I really wanna stop the nail biting)

It was my aide who suggested something that I then modified to make it work. She knows that I love my cat a great deal, and she remembered how I’ve said that it’s therapeutic to just sit there with him; feeling his soft fur and the rumble of his purr.

So she suggested I think of him.

It wasn’t quite as simple as that, though. Because I’m sure we all know how well “think happy thoughts” works. It only works so far as your brain cooperates, and when your brain has already moved into the panicked-babble-sector, you can try as you might, but thinking any kind of sensible thought is really damned hard.

But I still liked her idea. Kaktus (my cat) is such an immense source of comfort for me that surely something can be worked out with this. Short of taking him with me to work – obviously – though that would be absolutely fantastic, I have to say.

I mulled it over in my head for a long time and it was inspiration from my conversations with inner friends, while still being attentive on the physical world that did the trick.

Leaving completely and entering an inner world was not a viable solution, and if I needed to have a conversation in the physical world, then having one with an inner friend at the same time would only make things worse. But I remembered what causes me the most discomfort: sensory stimuli - especially sounds. What is it that makes Kaktus such soothing company for me? His purr – his sound.

And so I decided to try and conjure up the sound of his purring in my mental ear. I had never tried this before, separating one sense out and stimulating it mentally, and it took a LOT of practice I tell you. I have not yet perfected it, either, but it is so far looking very positive.

I can, in fact, conjure up the sound of my purring cat in my head. It doesn’t have quite as much of an effect as actually having him with me, unfortunately, but with a little luck and well-timed efforts it’s enough to keep me from stressing out over things I don’t need to stress out over.

When I know I’m going in for a meeting that will be critical for whatever’s going on, I’m always majorly stressed out, and now I’m trying to counter this with the purr. It works to some degree. It cannot prevent melt-downs from things that are really bad, but it can give me a little less antsyness, and it can mean that I won’t have explosive diarrhea 12-24 hours after a stressful situation peaked, which is otherwise the norm for me.

It works like a mild sound stim only it is noiseless for everyone but me. And it doesn’t work against sounds in the physical world but rather against the chaos of panicky ’noisy’ thoughts, which my brain sometimes inflicts upon itself.

The purr also helps me calm down and fall asleep at night. It always takes awfully long for me to shut down my brain and go to sleep. There are so many thought processes running that I need to consciously stop, before I can mentally relax enough for sleep to arrive. This means I have a very long shut-down time before bedtime, I can’t go straight from a conversation and then fall asleep unless I am utterly exhausted. The purr speeds up the proces of sorting through everything and getting ready for sleep.

I’m practicing this mental stim every night (except for the nights when Kaktus sleeps on my pillow – then I have the real thing), in order to be able to pull it up in my mind faster and with greater certainty. It is my goal to be able to use this also in ‘emergencies’, when I have been surprised by something negative – like running into an asshole ex in the street or getting really bad news from someone. I cannot do this yet, but I hope to achieve it at some point.

So far, when I know a tense situation is coming up, I can reduce the anxiety and jumbled thoughts a little. I hope to be able to use it for more than that or perhaps develop other, similar methods later on. And I hope to get so practised at this that I’ll eventually do it automatically rather than having to think about it. That would be an immense succes for me.

It is only very recently that I discovered that this is actually fairly common for aspies/auties to have, and so I think it is very important to spread the knowledge thereof, because I have spent many, many years thinking I’m crazy and trying to defend, explain and rationalise what I was doing – mostly by telling people I was thinking it up for novel-writing and publication purposes.

What do people do when a location/situation they are in becomes too much for them? They leave. This is why some people leave the pub after their fellow pub-goers become too loud and rowdy. This is why parents move their kids to different schools because of bullying. This is why you stop hanging out with people who treat you badly. This is why people get divorced (among several other reasons). If your situation is too much for you, then you leave it, if it is within your power to do so.

It’s that last part of the sentence that’s important, because auties do exactly what everyone else does too. We attempt to leave a situation that is too much. Our problem is, though, that the situation/location that’s being too much very often happens to be the world in general. That’s a pretty difficult location to leave. (I’m still hoping for intergalactic spaceflight in my time, heck, I’ll settle for interstellar )

Since outer space is not an option, we often look to inner space. I want to also acknowledge that a lot of people leave the world permanently by way of suicide, but this is about a non-permanent way of leaving. Inner space as I termed it. Our headspace as other would call it – that term never really agreed with me, though. Inner worlds and inner friends can very quickly become a safe refuge for an autie, and for me it certainly has been. As with the other posts, this is about how I experience this particular aspect of my dx, but I simply can’t help talking about others as well, because it is, in fact, only a few weeks ago that it became fully clear to me that I am not the only one who does this, and have done this since forever. It was a talk given by another aspie that brought it home, because this aspie, Louise, described exactly what I’ve been experiencing – always.

So this post is just as much to all you other auties/aspies out there, who don’t know yet: A lot of us have worlds in our heads that serve us as refuges from physical reality. If you do this, you are not alone, and you are not doing autism wrong.

This post is also to all those parents, friends, et al who are very concerned about their autie-friend’s seeming craziness. Don’t be. Most of us have a very good grasp of what belongs in which world, and we don’t get them mixed up. Mostly. Most of us. The whole point for us *is* actually to keep them very separate, because your NT world is hell to us much of the time, and our inner world is safe. That’s why they don’t mix, and we won’t let them. Please don’t try to force us to.

So that was my lead-in. You may have noticed now that I call them inner worlds, where others (primarily NTs) would call them imaginary worlds. This is on purpose. Because these worlds are not imaginary in the regular sense of the word. To us these worlds are real – they just aren’t physical. And I hope you will acknowledge and accept that difference. Stuff doesn’t need to be physical in order to be real.

To say that they are imaginary would be to imply that we think up what is to take place there; that we decide who will be there and what they will do. That is, in fact, what I was telling myself all those years before I realised what was going on. To manipulate and rule my inner world was what I tried to do, because I thought that was how inner worlds were supposed to function. But I had the concept of inner worlds all mixed up with imaginary worlds. If my world had been imaginary, I could have done what I tried, but I couldn’t. I’ll quote the aforementioned Louise and translate her words for your edification:

“As a child I talked to my friends and we told each other about our imaginary worlds. And I told them about what had happened in my world since last time we talked, and when they told me of their own I realised that they were making it up as they went. Nothing of what they said had actually happened. They were making it up. So I thought it must just be me, and I stopped talking about it.”

And I can SO relate to this. I assume she realised that they were making it up, because she found internal inconsistencies in their stories. That’s how I usually notice that something is up. She didn’t say this, however, it’s just an assumption on my part. Anyway, for me to tell you about these things would be like you telling me about a dream you had. It is something that happens in your head that you don’t have any influence on, except sometimes on your own actions in the dream.

I don’t remember when I first started visiting my inner world. It’s a long time ago that’s for sure.

I always did prefer games of fantasy, science-fiction, adventure. Something different from my own world. I hated playing “family”. What do you English-speaking folks call it? Playing house? I’m not sure. Why would I want to play family? I had one of my own, after all. Games of fantastic places fueled my inner worlds – that is clear to me now.

The first year in school was kindergarten. No actual book-learning yet, so my oddness had not yet stood out as much. That year I played with the boys in my class. We played pirates, cowboys and indians (yes, I know that’s incredibly racist, but that’s how it was, I know better now), soldiers, knights, heroes. Tales of daring and adventure. I came up with the interesting plot-twists and -hooks, so it wouldn’t all be about fighting each other. A lot of it did involve play-fighting, though. My goodness, we were like puppies, now that I think about it.

Anyway, they were stand-alone stories for me back then, and my plot-construction was unconscious. Like a constant awareness that nothing is ever simple, so I never accepted the premise that “they hate each other, so they fight”. I analysed my way to the possible reasons for the enmity and went from there, and I did it without even realising that I did it. In my mind the motivations of the fictional characters in our heads were as real as our own.

Of course, after that year followed 9 years of not having any real connection with my class-mates at all, because I was too good with book-learning to share their experiences in class, and I was too poor at social interactions to compensate for it with my lop-sided and poorly timed smile, odd sense of humour and sharp reactions to being touched.

Things developed from there. I had no real friends. Companionship is hard to find when people shun you like a plague-carrier. You might as well have painted a cross on my door. The few friendships people did pretend to have with me were exactly that: pretend. The answers to the maths problems were awfully neat to have.

So what to do instead? I immersed myself in books and music and with that kind of stimulation comes companionship and creation. Not necessarily of books and music of my own composition – I can’t claim credit for that unfortunately – but of creations of the mind. Reading and listening formed pictures in my head. And those pictures took on a life of their own. And they became my companions.

Lives that have continued in my head ever since. A good example is how I watched the first three Star Wars films back in ‘95. I was 11 years old. I latched on to one supporting character (Boba Fett – like many others) and told my own stories from there. It wasn’t until several years later that I found out that entire books had starred him as the main character. His tale in my head was better anyway

And they really do take on a life of their own in my head. I don’t so much decide what their stories will be as just follow with the natural flow of things. Even the role-play characters I make with a conscious effort to make a specific type of character do this after having been played for a little bit. They become real to me. Real people with feelings and motivations and purpose.

You know what’s awesome about this? You can go to a place where you are someone else, and it’s completely safe for you to do so.

Mind, that doesn’t mean I don’t ever get hurt when I’m spending time in one of my inner worlds (because, yes, there are many), in fact sometimes I get hurt rather badly, but hey… that’s just realistic. And it’s okay, because in those worlds I have friends and sometimes family, and skills and possibly weapons etc etc to help me out. Those are things I don’t have much of here. Sometimes I’m the hero of a tale, at others I’m the Damsel in Distress so to speak. And sometimes I’m just a by-stander.

The by-stander position, which I often have, is what’s hardest to explain to people. They don’t understand that I’m not the main character of my own tales, but that’s just the thing. They’re not MY tales. They’re just tales. And sometimes I’m in them, and sometimes I’m not. That’s why it’s an inner world and not an imaginary world, because if I came up with all of this consciously, damn straight I’d be the super-heroic lead in all of them. But I don’t, and I’m not.

My inner worlds are there. Some of them I have adopted and adapted from fictional worlds created by others. The Star Wars universe as mentioned earlier. I don’t go there very often these days. But I very often visit the Star Trek verse and the Forgotten Realms verse of D&D. And then there’s the one my mind created entirely on its own. It’s not the oldest of my worlds, but it’s close. It’s the one I’m writing an atlas/encyclopedia for. It’s my homeworld.

Much of the time I feel more at home there than I do here. Not because everything is peachy-keen there. That world has seen war, too. But I am not the odd one out there. I am not a freak of nature there. I’m just me. And being me is not a problem there.

As I have grown older I have begun using my inner worlds consciously. They’re there, after all, why not make the best of it, no?

Therefore, when I know I’ll have to talk to specific people about something specific I practice it in my inner world. I so often screw up on how to do or say things, because I can’t think of the right things, when I’m in the situation. But when I have a chance of preparing, I can get into my inner world, and talk to someone about it there. I can test what I want to say, see if it makes sense, because the peeps in my inner worlds will respond and tell me if it’s completely off. There’s a reason I’ve been able to hide my disability for so long.

Unfortunately this leads to a lot of talking to myself – out loud – and that tends to worry people to bits. Got me labelled crazy more than a few times.

So?

It helps me. Sometimes I go there just to receive a calming pat on the back, which I can’t receive without physical pain in the physical world. Sound strange? It probably is. But I don’t care anymore.

If I were to denounce these strange worlds of mine and stop using them as sanctuary, it’s very likely that I would get worse – mental health-wise. No, not just likely. Absolutely certain.

I have seen and heard a lot over the years. Films, radio shows, conversations people were having next to me. Everything has been stored, so I actually do have a large database of neurotypical things to say and ways to be. I cannot access that database during a conversation, though, so I need to have prepared the necessary stuff beforehand. So how do I know which phrases I need to bring with me? I go test the conversation in an inner world. I do this with almost everything. The only exceptions are conversations with people whom I feel completely safe around. Not just safe as in knowing they won’t hurt me, but safe as in “it’s okay to be evidently autistic and socially awkward around them”.

When I’m picking out clothes in a store, I am mapping out a conversation ‘tree’ for when I go to the check-out. What are the things the shop assistant is likely to say? What will I respond to either of those options? What might they respond to either of my responses? Etc etc.

A friend once said she thought I’d be majorly good at chess. I probably could be, but it wouldn’t be a game for me. It’d be too much like my own life. See, every interaction I have with people I have mapped out on trees before they happen. I improvise very few things, because I can’t do that very well. And so I rehearse interaction types and such in my inner worlds – sometimes speaking them out loud, correcting myself and my words if it ended up sounding silly or wrong.

This is also why I only seldom chat with people. Instant messaging is the kind of improvised chatter I do not do well, even if it is in text, and so I end up messing up. So very often.

I talk to more people in my inner worlds than I do in the physical world. I touch more people in my inner worlds than in the physical world. A lot of the time I miss touch a lot. But allowing touch is a major gamble for me, because it could very well trigger one of my sensory overload meltdowns, even if the touch was wanted.

I try to assuage this lack in my inner worlds. Sometimes it works. A lot of the time it does. Also: it is easier to find non-bigoted people in my inner worlds, making it a lot easier to find people whom I can get along with, and would actually bother to get close to.

It’s never quite the same as the physical world, obviously, and that is both good and bad. I cannot sate a physical need in my inner world, it’d be lovely, though, I’d never need to buy groceries ever again. But it doesn’t work like that. On the other hand it never triggers my sensory hypersensitivity, because my mind has been kind enough to make my inner worlds liveable for someone with my disability. My mind appears to have been very good at this, though I tend to have the same non-touchy mannerisms there as I do in the physical world. Curious how I never got rid of that caution.

Anyway, most people would probably be quite surprised at the richness of my inner life. And many would advise me to start living with real live people in the real live present-day physical world. Yeah, that’d be awfully nice if I could, I’d tell them, but fact is that most of the time I am alone because being with people is detrimental to my health. People in general cannot stop talking over each other, they keep habitually touching each other, and that unfortunately includes me, they want the telly or the radio running constantly, making the environment hostile for my sensory perceptions, and since most people won’t make accomodations, I’m the one bowing out. I’m the one saying no thanks to parties. I’m the one not wanting to go to the café. I’m the one not coming along to celebrate a birthday, and at some point people just stop inviting me.

Not because they don’t like me, but because they think my reasons are just poor excuses to hide that I don’t like them. That way shit quickly becomes a very lonely existence.

So ever since I was a child I have been soothing that loneliness with company I couldn’t frighten off with my strangeness. Yes, it’s all in my head, but the safe space, the sanctuary it gives me does not replace interactions with people in the physical world. It gives me a refuge in times of sensory or emotional overload, and it can compensate a little for the interactions that people in the physical world refuse to share with me, because I need accommodations that they are unwilling to make (speaking plainly, no subtle joking references, no touching, no winking and nodding and expecting me to pick up on social cues).

Hmmm, this post is becoming rather long and rambly. It is hard to describe how these inner worlds really work, because I have not fully explored the function myself yet. I just know that it helps me a lot to have a place to escape to – even if I can’t go there physically. There is one thing that sometimes prevents me from going inside, though. And that is physical discomfort. A level of physical discomfort will keep my attention in the physical world and prevent me from escaping inside to calm my mind and soothe my senses. And that makes it really bloody important that I have the option of become physically comfortable in my own home. A good bed/couch, the right covers/blankets, a good chair, the right clothes. Not everything is needed all at once, obviously. And sometimes when I just need a conversation with someone I can have it while doing something else in the physical world – like driving. But if I need to go inside and pull my physical awareness inside as well. I need to not be stimulated by physical stuff.

But when I have complete control of my surroundings, like I would in my own home, then I can make sure that no sounds, smells, touches that I have not okay’ed will assault my senses. And then I can go away for a little while, to a place where I don’t have to feel unwelcome.

I originally intended to write two posts about my therapeutic things. But I decided to mash them into one, because that makes more sense to me. Besides, I’ve written about some of this before, and there’s no reason to reiterate too much. And then again, maybe there is, since a lot of people do seem to still not get it.

Either way, I’ve covered my stims, and how they work and affect me. But stims are restricted to what I can do with myself and my body in a given situation. There are also items that relieve stress for me, because they possess a set of properties that work in a stim-like way.

It is not unusual for autistics to have what a lot of people would condescendingly term a “safety blanket”. The reason I find this condescending is fairly simple: The term safety blanket comes out of a set of concepts we connect with children and childhood, and autistics should not be infantilised. Most of us are, unsurprisingly, adults, and there’s no reason to treat us as if we’re children.

Evenso, the term safety blanket is stil far more neutral and factually accurate than the similar term in Danish, which is a lot worse in terms of the words used. I suppose that’s why I object to the term, because looking at the words “safety blanket” objectively they do actually describe the function of the items I want to talk about. Except that it’s far more complicated than being a matter of any random cloth.

The items we find comforting can be widely varied. Some have a specific clothing item, a shirt or a jacket or a cap they just cannot exist without. An autistic kid I know simply cannot function if he’s not wearing his cap. He cannot find calm unless he’s wearing it. Whether this has to do with the sensation of pressure on his skull, or whether it’s because far too many people have a tendency to touch his gorgeous red hair and thus overstimulate him badly, I don’t know. Either way, he wears his cap, he wears it to bed, even.

I think this is awesome. This kid has such a simple thing as a cap that soothes him so he can function. And his wearing a cap bothers no one. Except of course the people at the institution where he lives part-time. They believe that it’s wrong to wear a cap to bed, and so he must be forced to take it off and place it on the window sill at bedtime. The result: the poor boy never gets enough sleep, because he can’t just calmly lie down and fall asleep. He will toss and turn until he exhausts himself to sleep. ‘Cause that’s so healthy, and this is what people are willing to do to an autistic child in order to make him appear normal. The most ridiculous thing about it is: who’s gonna see him wearing his cap to bed? The carers. That’s who. Why does he need to appear more normal in the privacy of his own home? This is the kind of outright abuse that autistics are exposed to every day.

His mother is a friend of mine, and when I noticed this “take off cap and place on window-sill” as a mandatory part of his bedtime routine at the institution (it was written down, and she’d asked me to go over the list to check for problematic stuff, and there was a whole lot more than this, I tell you), I pointed out to her that there is no point to this other than a vain attempt to force him into a normalcy he can never achieve anyway and which directly harms him ie. robs him of healthy and sound sleep. Suffice to say she was furious that they’d do this to him, and she was furious that no one at the institution, which was specialised in autistics, seemed to actually know enough about autistics to know why this might be a problem. She didn’t know either, how could she? She’s not autistic and she’s not a pro carer, she’s ‘just’ his mom, who expected the pros to be able to help her help her son.

Anyway, this was just an example of how much seemingly inconsequential things can mean to an autistic person. Sure, everybody has favourite clothes, but most people won’t lose any sleep over not wearing them. Some, if not a lot, autistics might.

Me, I don’t need to wear anything specific when I sleep. I just need a blanket I can wrap myself in – as detailed in my last post. During the day, however, there are a lot of little things that make my life a lot easier, because they give me a tiny shot of comfort/calm. They’re seldom enough to avert crises, but they can make an average day a little less trying. I’ll be getting back to crisis aversion methods in another post. Though, I’m sure some of the concepts mentioned in this one can be used in that function as well.

Long sleeves are a must for me. Because I need those sleeves to wrap my hands in. That’s why I prefer winter to summer, because in summer it’s usually too warm to wear long-sleeved blouses. In the in-between periods I also have the option of thin hand/arm warmers. If it’s really cold in winter I combine shirts and thick hand/arm warmers. I need stuff around my hands. Doesn’t need to be tight, but I cannot have it too loose. I remember back in school gym class, I frequently messed up my hands due to my super-bendy joints and autism-induced clumsiness (my co-ordination is completely off), so any kind of ballgames usually involved me spraining my wrists. It became routine for me to bring bandages for use after gym class. It also became routine for me to wear those bandages way longer than was necessary, because it just felt so good to have something around my hands. I always blamed my bad and loose joints – now I’m fairly certain it’s because of the need for pressure. So now bandages have been replaced with arm/handwarmers/long sleeves and I feel better for that.

I often keep a small round stone in my pocket - usually my jacket/coat pockets. It has to be round, without any edges at all. Edges ruin the soothing effect of fiddling with the stone. And fiddling is what I do with it. It’s usually plain stones found on the beach, worn completely smooth and round by the surf. Keeping it in my palm and just holding on to it, feeling it heat up. It has a very calming effect on me. There’s a drawback to this one, though, as sometimes when I’m having a melt-down it’s really not a good idea to have things around that can be thrown. So it’s a method I need to use with some caution/planning, remembering to put it well away if I can feel my mental stability take a turn for the worse.

Ironically I’ve never been one to fiddle with my pens and pencils. Nor have I been one to chew on them – something my mother did a LOT. She jokes with having the World Record in how many pencils one person has eaten during their school years. I mostly only fiddle with smooth things.

And if I don’t have a stone or a roundish thingamajig in my keyring I can fiddle with, I have a tendency to lodge my thumb straight along the inner joints of my fingers on the same hand and then just hold my own thumbs. It’s an uncomfortable angle, but boy do I often do that. None of these work when I need my hands for doing stuff, obviously, and that makes the handwarmers a far better item in this regard.

Then there’s bigger items such as stuff made out of fur. My tactile hypersensitivity is soothed by fur. Not all fur works, mind you, but most of it does. It feels absolutely awesome and that feeling grounds me and lowers my stress levels at an amazing rate. Unfortunately I can’t bring my fur blanket with me everywhere, nor can I afford to buy actual fur clothes – they’d be too warm to wear indoors anyway.

The fur blanket I use is made of fox fur. They are left overs from other things, sown together in long strips and those strips are sown together inbetween leather strips to offer better stability than the patchwork of left-over fur skin. It is and looks like a patchwork fur blanket. I use it to cover my bed in the day time, so I can easily just lie down and get an instant boost. It has been a greater help than I anticipated when I bought it, and it is one of those things that can get me through even very hard times. Usually lying down on it for an hour or two can almost give me back half my day’s energy level. Once or twice have I slept on it through the night. Never have I slept so good, but I can’t do that regularly, because I’d wear it thin, it’d fall apart and it’d end up being ruined and I can’t just go and buy a new one. So I use it with great care, and I am very careful with not becoming dependent on it, because I simply cannot afford that.

I also have developed a fondness for reindeer pelts. And reindeer pelt is pretty amazing, because it isolates very well, and actively warms up the body lying on it, which is a double-bonus, because I tend to get very cold a lot. Not sure why – I wonder if it has anything to do with my stress levels – but it’s very annoying and sometimes even debilitating, when you can’t feel neither your fingers nor your toes, because they’re outright icy to the touch.

And there are my notebooks. They are not a stim function, as such, but they allow me to organise my mind a lot better than I otherwise could. In that regard they function sort of like a Pensieve from the Harry Potter-verse. Getting the thoughts out of my head and down on paper actually helps to put some distance to them and allows me a little respite, so I can deal with them at a time when I am better equipped to do so/have my therapist or aide present/am no longer in a situation where a tearful break-down would be detrimental to me.

I have several notebooks. At least three of them are with me at any given time. I have my specific autism/management notebook. Whenever there’s something I need to discuss with my aide, my case worker or my shrink I put it in there. It can be everyday stuff like asking my aide what it means when NTs do this or that action, or whether it is normal for NTs to say so and so or was that actually out of the ordinary. It can also be things such as asking her to help me contact xyz bureau or to check up on something for me.

It can be a bad experience that I want to talk to the shrink about, and if there’s 5 days till I’ll see him I may actually forget when I’m there, because other things will be foremost in my mind, and then the experience won’t be dealt with until it has festered and caused real damage. It can also be a simple thing such as remember to ask case worker for deadline on xyz stuff, or remember to tell case worker about xyz progress.

That notebook is my practical hands-on thing.

Then there’s my little one for ideas and random thoughts that would be distracting if I kept thinking about them in an attempt to remember them. Or if I stopped thinking about them, the annoyance I’d feel over forgetting them would distract me. So they are written down – even the bad ideas. It in this little notebook that I write down a good idea for a post, a good idea for a brief snippet of dialogue for a story I’m writing, an overview of the order of a post series, a priority list of things to do, a recipe someone told me about that sounded good, a name and background outline for an RP character. Anything really. There are many interesting things in it by now.

My third notebook is for poetry. I haven’t written as much as I would like the past couple of years. It sort of just lulled. Don’t know why. It’ll pick up again, I’m sure. I always keep it with me – just in case an idea strikes me.

A notebook I only carry with me sometimes is my RP-class notes. I teach an RP class one night/week – 10 weeks/semester. And the kids are so unpredictable that I frequently have to rewrite what I’d prepared for them. By now I’ve stopped preparing anything more than what I’ll need for the next class, rather than preparing a full semester’s classes at once. But that means I need to take more time out of my weekly schedule to prepare these things, and then it’s good to have a notebook specifically for this.

Then there’s my big notebook for my world. The fictional place in my head, the existence of which I first became consciously aware of at age 13-ish. I’ve mentioned it before and I’ll come back to it again. I started describing it in a sort of encyclopedic way several years ago. Outlining different races and nations etc. etc. yes, I am effectively writing an encyclopedia or rather: a world atlas of this world that only I know. I cannot bring this notebook with me everywhere, because it is big (like A4 format) and doesn’t fit neatly into every bag I own.

Then there’s my other A4 notebook. Considerably thinner than the other, though, for reasons that ought to be obvious. It is the one I use to write out entire passages, when I want to write full text, but can’t bring the computer, say, on to the lawn or somesuch ‘strange’ places one might place oneself in order to write in relative comfort.

But yeah, at least three of them are with me at all times.

And then there’s my books. Regular books. It soothes me to be around books, to touch books, to smell books, to see books. I organise my bookshelves, and these days I have so little room, that I’ve had to arrange the books with two rows on each shelf, and there’s almost no order left, and it’s messing with my head. I always carry at least one book with me along with the notebooks, because sometimes I just need a little literary escapism, and that’s a fairly easy thing to supply – as long as I remember to bring the book. Heck, sometimes it helps just to flip through the pages, enjoying the feel of the paper between my fingers.

Aaaaaand last but not least, though I’m loathe to count my cat as an item, I do think this post is where he fits in the best. Cuddling with my cat has a calming effect like few other things. The soft fur, the utterly therapeutic purr… yeah, I don’t know what I’d do without him.

Right, in my first post in the series I talked about one specific stim that I have: Nail biting.

In this post I will generalise a little more, and I’ll try to explain how I deal with my stimming.

I have several stims. Most (if not all – I’m not sure) autistics have one or more stims. They are the repetitive stereotypical movements that lead people to such misconceptions as: “Autistics? They’re the ones who bang their heads on the walls, yeah?” And no. We’re not. Not as a rule anyway.

Stims and stimming is short and slang-esque for stimulation. Now why might a person want or need stimulation? Because something needs to be let out, something needs to be vented, or repressed, or controlled. It can be any number of things. For many autistics that I’m aware of, it’s often a sensory thing. And it certainly is for me, too. But it is also a way to let out stress, which doesn’t have anything to do with sensory input and overload.

Stimming is often about giving yourself a sensory stimulus to “drown out” another stimulus that is causing discomfort and that you cannot simply remove.

The most effective stim is the stim that’s in the same category as the one that’s causing discomfort. Thus, if a sound is overloading me, I’ll need a sound to drown it out. If I can’t make any sounds, I’ll need a more intense form of stimming with a different sense. The function of the stim is to pull my attention away from what’s causing discomfort to something that’s not.

For me the examples are as follows:

When there are sounds around me that trigger a stim, my natural/automatic stim will be small grunts.

When there is stuff on my body (clothes, sticky food residue, dirt, sweat, blood) that feels not right, it triggers a tactile stim in the shape of usually fiddling with my earlobes. The effect of this stim can be magnified by wearing earrings, but they can also be a major drawback on the days that they bother me. There’s no system to this, so it’s a gamble, and I usually go without. Tactile stuff can also trigger my nail biting.

When I have been touched by another person. And it doesn’t matter who this is, friend, stranger, family, my natural stim will be to bite my nails or vibrate a leg. Though there is another effect of this that I’ll also get into later.

And then there’s my constant stim, which is in effect at almost all times, because it works both for tactile sensations and for my internal stress which are by far my two most sensitive issues. The constant stim is: Tension. Bodily tension and pressure.

I always sit on one of my legs, curling it up under me. Or I wrap my legs and feet really tight around the chair legs or table legs where I’m seated. Or I wring my hands and fingers inside the sleeves of my shirts (they tend to get very worn, very quickly), I crack my toes and ankles by stemming them against the floor, the wall, each other. And I like certain clothing articles to be really fucking uncomfortably tight at times.

It is constant. And I really mean constant. I do it when I sleep, too. I’m obviously not awake to observe it, but I sleep like the dead, ie. I do not move around at all, while I’m asleep, so the position I fall asleep in, will be the one I wake up in. And I cannot fall asleep without tension/pressure. This means, of course, that sometimes when I was careful with my position, I wake up with intense pain in some of my joints, because they’ve been positioned really badly all night.

Some achieve the needed pressure by using those extra heavy blankets/covers. 10 kilos is a standard weight of such a one. It is apparently a great help for a lot of autistics. I, having been undiagnosed for most of my life, have simply developed a method to get that pressure/tension without a weighty blanket on top of me. I always wrap myself very tightly in the covers. I prefer wintertime to summertime, because my summertime covers are as thin as the sheets. They have to be, because I wrap myself completely in them, and that gets hot in summer. I wrap myself up completely. Head to toe. I fold it around my head, so only my face is free. I fold my hands in it so my wrists are positioned at an angle that would make most people gasp in pain, and the same with my ankles and feet. I’m hypermobile, and my joints aren’t doing great – there’s a reason for this somewhere in these paragraphs >.<

This constant pressure and tension keeps me in my body. It keeps my awareness in the physical world and with my physical presence. I’ll get back to why this is important in a different post later on. The pressure also gives me something to focus on, when my brain is acting up and being uncooperative.

Those are my major stims.

There are several minor ones, but as they don’t show up consistently, I won’t bother listing them.

It is very often the stimming that makes an autie identifiable to others. It is also very often the stimming that makes others very reluctant to work with us. Not because our stims annoy them specifically (though some might), but because our stims make it really terribly obvious that we’re odd. Which we are – there’s no denying it.

And so I have developed what I have decided to term Directed Stimming. I have been lucky enough to be able to exert some level of control over my stims. Not that I can choose not to stim – I could try, but that would have consequences like my stress levels heading straight through the roof – but that I can to a certain degree choose which stim to use. And this has turned out to be very, very good.

The most effective stim will always be the one dealing with the sense that is being overloaded. And for me that is usually either audio or tactile perceptions. On top of that there’s the stimming needed to deal with what my brain does to itself – stressing itself out – and then I need a stim to let that out as well. So that’s three main sources (sound, touch and internal) for stimming, because those are my three most vulnerable senses. That also means that stims that deal with these senses are the most effective ones, and that gives me some possibilities when it comes to tactile stimming – unfortunately, not everything works equally well.

A basic rule of thumb is: the more intense the sensation the better it works as a stim.

That means that it’s a lot more efficient to scream my lungs out than make little grunt-y sounds. But screaming my lungs out tend to not get me the best kinds of attention, so I try to manage with little grunts COMBINED with a tactile stim. It usually works.

I haven’t seriously screamed my lungs out in over a year. Almost two years even. So this actually works, but it took me a long time to work out what my need was and what actually helped. See another thing that helps is to sing REALLY LOUD. And hey, I’m a trained singer, so that’s not entirely awful to listen to, I’m told, but it’s just not always viable to get to work on one of Mozart’s famous soprano arias. Really not. Hence, grunts and some tactile stimming.

Unfortunately, like I mentioned above, when I replace stimming for the ‘correct’ sense with stimming for a different sense it needs to be stronger, so a slight foot tap will not help when it’s sound I’m dealing with. So that’s when I’ll be pulling, tugging, folding and pinching my earlobes till they hurt. Or picking at my skin elsewhere on the body. I have really, really bad skin on my nose, because I tend to rub it – very hard, and I am literally wearing the skin off my nose at time when it’s really bad. The one I usually fall back upon, though is the one that causes the most pain: nail biting.

Because yes pain is actually sometimes necessary to drown out the sensory overload. Sometimes pain is the only thing that’ll keep me grounded and mentally present inside my body.

So, as you can see, sometimes the need for a stim calls for a very strong stim in the first place, replacing the optimal stim with another increases the needed effect of it, and so Directed Stimming, comes at a cost.

If I could make do with vibrating a leg, it would often be great, but too often this causes movement via the table or the floor so the entire room can feel the vibrations. And to most people that’s annoying, and so I direct my stim in another direction. Little noises are mostly also an annoyance to others, and so they’re out of the question except when I’m alone. As it turns out, cracking my joints (and my ankles and toes crack VERY loudly) can also make people seriously unsettled, so that’s ruled out. So usually I am left with two-three stims that are at all useful in the company of others namely ear fiddling, nose rubbing and nail biting.

And they need to be pretty damn intense if they are to be at all useful. So you can imagine how my ears, nose and fingers look after a stressful day/week. Pretty damn awful. That is the price I pay for insisting upon entering environments where I cannot freely stim as I need to. And it hurts. My nails are awful, as I wrote about in the previous post, and my ear lobes and nose are very often very red, from all the abuse they’ve had to take.

Directed stimming is both a boon and a curse. On one hand it means I can for instance go to the movies and not annoy the entire audience and get myself thrown out. It means I can be in a workplace that is not entirely autie-friendly and still manage to not scare anyone off. It also means, unfortunately, that people have a tendency to start expecting this effort of me, and frankly… the pain and extra stress and the extra need for sleep is very often not something they see.

Just the other day I attended the farewell-do of a colleague of mine. It was during work-hours, so thankfully it didn’t add extra hours to my schedule. The food was terrific, but there were 22(!) people there. And all the chatting made me really want to scream, so instead I made for little sounds – I could fake them being yum sounds because of the food – and wrapping my feet really badly around the chair. I could hardly walk up the stairs afterwards. I lasted an hour.

People commented that it was good to see me enjoying myself. But I hadn’t enjoyed myself. I had enjoyed the food, and I had laughed at the funny speeches. Sure. But enjoyed myself? No. People asked whether I wasn’t glad I attended it. I wasn’t even able to lie and say sure. And when evening rolled around I was ready for bed at 7. Three hours earlier than normal, because I’d done one hour of being in the company of others. I hadn’t even socialised. I hadn’t conversed with anyone other than to gush over the delicious food. But the sound was a cacophony to me, and people touched me. AUGH! Well, only one person did. But that was a LOT! And it was only my back and right arm, but shit…

I did not enjoy myself, because it cost me way more than it was actually worth. And I am still undecided as to whether I’m glad I attended. I’m leaning towards no, though, because my nose? My nails? My ears? My joints? They aren’t glad. At all. The retiring colleague, though, she was glad I attended, and that makes me glad. So in a kind of sort of indirect way – I suppose I’m glad. But my stims went completely off the charts, as they always do in these situations. And that’s why it’s such a curse.

As long as I can switch to a less obvious and less annoying (for others) stim, I’ll try to do it. And I suppose people will also expect me to do it. But the cost is that the replacement stim will be so much worse, and people won’t notice it, because I deliberately chose one they won’t notice.

And this? Is a pretty good example of what the demand to appear normal does to someone like me. It not only stresses me out. It actively physically harms me, because I have to damage my body in order to not have my “abnormality” be too uncomfortably obvious for all those “normals” out there.

So please, people. Next time you see an autie stimming – don’t ask them to stop it. A few of us might be able to stop the particular stim you noticed, but you can be damn sure that it will just have been replaced by another, and that the price will be far beyond what you’ll ever notice about us.

I developed this Directed Stimming as a consequence of being asked to stop doing certain things. Ironically, the one stim my father has given me the most flak for is my nail biting, which is one of the two stims (the other is the body tension-thing) I have never, ever been able to direct away from. I was late-diagnosed, so I never had an explanation for why I needed these stims. I didn’t even know they were called stims. Directed Stimming was a coping method to avoid too much disapproval.

However, this has backfired somewhat, as people now expect me to use it. And I am still trying to learn that I should only use this coping method when it is for my own sake. This is something I can argue sensible usage of if I really wanna go eat at a restaurant or go to the movies. Directed Stimming is essentially a possibility for having something resembling a life for me. And I have to keep reminding myself that I should not be using it for the sakes of others, say to not annoy my colleagues with a stim. No, I should be given a workstation that doesn’t trigger a need for stimming, because the price for not only dealing with whatever triggers the need for stimming as well as the additional cost of Directed Stimming is simply too high to be paid for all of the full work-days of the entire full work-week.

So while this is a very, very useful tool, it should be used with great care. And I’m still learning that part of it. Self-care is not my strongest suit.

I have very, very vague memories of mum cutting my nails, because they were too long, when I was very, very young. very young indeed.

Much more clearly do I remember the multitudinous attempts by mostly my father to get me to stop biting my nails, because it makes them ugly. I’m not even going to get into the beauty-demands that underlie that fucked-up reason to not bite one’s nails.

By now, I have healthier reasons to not want to bite my nails – unfortunately, they don’t make it any easier to not do it.

My nails and finger tips are constantly painful, because I bite not only the nails, but also the cuticles and the skin around my nails. They do look awful, but the thing that’s actually bad is that they feel pretty much the way they look: Really, really painful.

On any given day I will have at least one finger with which I cannot hold anything, because any sort of pressure on the finger will cause tremendous pain. Right now it’s my left index finger. I’m typing anyway, and it hurts like a mofo. THIS is a bloody good reason to stop biting my nails.

It goes without saying that a nail that has been chewed up is not exactly even, and uneven nails get caught on clothes, tissues, paper, etc. and that sensation makes my entire body twitch with a sensory discomfort so intense that it’s actually painful. THIS is a bloody good reason to stop biting.

I have trouble doing anything that requires the handling of wet rags or immersing one’s hands in water, eg. doing dishes, mopping the floor, cleaning the bathroom, showering. Because when my skin gets all soaked and raisin-esque it quadruples the pain in my nail-areas/fingertips. THIS is a bloody good reason to get rid oft he problem.

Unfortunately I have tried getting rid of the problem for 20+ years, and lo and behold! No luck.

Having observed my own reactions over the years I have noticed that I bite when:

A) I’m stressed out
B) I’m upset
C) I’m calmly engrossed in an activity that leaves my hands passive, eg. reading.

I have known this for a long time and the contradictory traits of point C vs. points A & B had me very confused. But then I was dx’ed and combining the autism diagnosis, which explains such things as stimming and being chronically stressed-out, with my chronic depression diagnosis, which basically means that I’m permanently upset and even more stressed out, it suddenly made complete sense that not even calmly reading a book could remove my biting.

In essence: my biting is not a bad habit. It is stimming. It is my pressure valve. It is my steam vent. I know I have had brief periods during which I managed to not bite my nails. I do not remember them at all – possibly because I’ve used all my energy on existing without biting rather than actually living life and experiencing anything. I don’t know for sure. What I do know is that all it takes to get back on the biting is one upsetting episode. Doesn’t even have to be something serious.

So my nail biting is stimming. But it hurts, and I’d rather prefer it if I could find a stim to replace it that didn’t hurt so goddamn much. I have a high pain tolerance, but pain is still a fucking nuisance, and if I can eliminate some of it then yay.

I just don’t know how.

Earlier today I posted that I’ve ordered a pair of ultra-thin gloves to see if they might get me rid of some sensory stimuli, because really… the sensation of pretty much anything on my hands and fingers make me want to place said fingers right between my teeth and start chewing. Every fucking time.

Biting my nails is therapeutically calming, and it places my hands in a place where they get no unfamiliar sensory stimuli, because hey, my mouth = familiar territory. Unfortunately, it also causes the internal sensory stimuli in my fingers to increase through the unevenness and the pain, so it’s kind of a self-perpetuating problem.

I hope the gloves might help a little.

However! That means I’ll need an alternative stim. Because I can’t do without stimming. It is exactly the same situation as when you ask that a person stop clicking their pen, they merely start vibrating a leg instead. Or something like that.

I stim for a reason. And to get rid of one stim, I need to replace it with another. Preferably one that does not cause me any fucking pain. That would be good, thanks. I can do this with most of my stims.

In some locations the floors are such that a vibrating legs annoys everyone in the room, in some locations a lot of people will be greatly annoyed by little odd sounds, in some locations there isn’t room to march back and forth on the floor. In all of these situations I can exchange one stim for another. But there are two stims I have never been able to replace and one of them is nail biting. I have, through sheer strength of will, been able to leave one single nail (the one on my left thumb) intact. I need it to play the recorder. But all the others: so chewed up it’s not even funny, and if something really bad happens, that one left-over nail will quickly disappear.

Perhaps not being able to bite through the gloves will just make me even more stressed out, perhaps my mutilated fingers will be immensely irritated by the cloth, perhaps, perhaps, perhaps… Perhaps they’ll actually help. Now I’m going to try, because I’m sick of not being able to do anything with my hands without being in pain. (and it’s also very practical to have the nails one needs to get splinters out of one’s skin, which I need to very often, because I’m clumsy as hell).

And I’m just hoping, hoping, hoping that my brain will automatically use my other stims so I won’t get all stressed out from not being able to use this particular stim. Gods, I’m hoping. Because one thing is certain: nail biting, while causing me a lot of beauty-ideal-insecurity (thanks, dad), is a tremendously efficient way to calm myself down. And that’s one thing that needs to be found elsewhere for this to even have a chance at working.

The gloves are in the mail – we’ll see how it goes when they arrive.

Being autistic I have quite a few of those. Peculiarities, that is.

And by far the line that has been repeated at me most often is the headline of this post. “We all have our little quirks.” And indeed we do. People on the normalcy spectrum have quirks, too. Goodness, yes. It’s what makes all of us, neurotypical or not, individuals.

So saying this line is not an untruth. Not at all.

It’s all in the way it is said.

Now, I am usually not very good at catching tone and inflection and such. I take things very literally. But this sentence, which is an absolute truth, is used so often as a reaction to disclosure on my part that I have had to delve deeper.

Very often this has been with devastating results for me.

You see, being unaware of tone and inflection very often means that I don’t always catch it when people insult me. I may even think they’re complimenting me,  when in fact they’re being sarcastically snide. Ah well, with all the shit I do catch, remaining blissfully ignorant in other situations is probably better for my blood pressure. But still…

This particular line includes no quantitative opinion on what I’ve just told a person. And usually it is said in response to something that warrants a reaction of some sort.

And so I started listening more intently. At first it didn’t help, and I need to spend oodles of spoons on it, but the way people say this line tells me everything I need to know about whether it is safe for me to interact further with them, so the spoon-expense are necessary right here right now in order to avoid worse spoon expenditure later on and in more harmful situations, where there might be bad consequences.

Of course there are many variants of tone and inflection, but I have managed to divide people into three major groups, based on how they utter this line and variations thereof:

The first is the group of people, who really have no idea how to respond to what I’ve just told them about my disability. They look away, shuffle their feet, hide their hands or wring them, sometimes try to busy themselves with something else, say uhhhh a lot, and sound hesitant and even apologetic when saying “Well, uhhhhh, we uhh all have our little uhhh quirks.” These people are mostly harmless (just like Earth) in that they will not bother me about these quirks of mine, and won’t demand that I get rid of them. On the other hand, they are so uncomfortable by being faced with abnormality that they also require an inordinate amount of hand-holding and comforting by me in order to deal with my(!) disability. This in turn requires inordinate amounts of spoons on my part, and therefore these people are only (semi-)safe to be around, when I have spoons enough for it.

The second group consists of the people who raise their eyebrows, send me a crooked smile with only side of their mouth, shrug, and appear overall relaxed about the whole thing when they say: “Well, tsk, we all have our little quirks, pffft.” Then they might roll their eyes a little and will sweep my needs and boundaries away as irrelevant and start telling me about this cute little quirk of theirs that is nowhere near a socially awkward problem, but is mostly just cute or funny. And it is also something they can stop immediately if/when the need arises. These are the people I do what I can to stay the hell away from, whenever there is a real choice for me to make about it. They are utterly poisonous, as they believe that my quirks are no worse than theirs and I should absolutely be able to just stop my fidgeting, or nail-biting, or sleeve-twisting etc. because they can stop humming and tossing their hair at any time. Not only do they believe this, they also expect me to get rid of my quirks. In fact, without having said anything about my quirks being unwanted, they expect me to be constantly working on “killing my bad habits”. They will always completely refuse to accept that my stimming and my quirks and my stress factors are considerably bigger than most other people’s. They can never be convinced and it is a complete waste of time to try to convince them. These people are the ones whose company I suffer when I have to and avoid whenever able.

The third group is a group I had not known about until recently. I learned something new a few weeks ago. Two, I think. I can’t quite place it. My samples are still few because of this, but this third group is characterized by looking me in the eyes, which, while deeply uncomfortable me, is a good sign on their part, they smile with their whole mouth and not just one side, they are relaxed and say “We all have our little quirks.” and while they add nothing to that statement, they subsequently start making sure that there’s room for mine. For instance by asking me what I need to handle this or that quirk, which I mentioned. If I had not yet mentioned any, they might give an example of this other person’s quirks that they have made room for in such and such a way.  Presumably they tell me this to show me that t is okay to tell them, because they will accept my quirks. Most of the people in this group do not understand that my stimming is multiple times worse than the quirks of normal people, nor do they understand why it is so, nor why I do it. But this is an irrelevant measurement of cause and size to these people, because they will make room for everyone, whether their quirks are normal-sized or Autism Spectrum-sized or whatever.

And I had seriously not met any from the third group until I started as an intern in the law firm I’m currently with. The first group is the most numerous – I ordered the groups according to how often I run into their members.

I don’t think there’s much hope for the second group, but I hope against hope that with some effort we can eventually turn the first group’s members into members of the third group, because there seriously needs to be more of those. Then, by the time those two groups have come together, the second group might begin to realise the way things are leaning by then.

But unfortunately that seems an unrealistic dream of the future.

For now I’ll just be glad that the people I have come to work with introduced me to the third group at all, because they are the first ones like this I’ve met in meatspace in my 26 years of quirky life.

I truly do not know whether to cheer or to cry at that.

Today my newspaper writes about how the DF’ers (That’s the Danish People’s Party – bunch of racist fucks) think that every hospital patient should have the right to refuse treatment by woman wearing a traditional muslim headscarf, and if not possible in that hospital, should have the right to be transferred to another.

We do, in fact, have free choice of hospitals here in DK. We can always refuse to be treated, and we can always request to be transferred, though there’s no guarantee another hospital will have room, everywhere is notoriously understaffed. This is public healthcare. And now they’re making a fuss about one of their party members having to accept treatment from a muslim doctor wearing a headscarf. Oh the horror!

This pisses me off to no end.

Not so much that these racist fucks want nothing to do with muslims – I’m pretty sure most muslims would prefer to have nothing to do with these hateful people, anyway – but that they would actually waste public resources on administration and transfers of patients in our already heavily overloaded health care system.

I go to the hospital regularly for sessions with a shrink. She’s supposed to help me with my disability – autism – and help me develop tools to manage my everyday life. She cannot do this, because she has never worked with autistics before, and therefore has some serious problems coming up with anything that I haven’t already read in the textbooks myself.

In the past 1½ years I have requested to be sent to someone else, either within this hospital or in another hospital, who knows and has experience with autistic patients.

They have refused every fucking time. They apparently have no one.

I happen to know that they have a resident fucking expert in this very hospital. But no one there has ever mentioned his existence at all, nor acknowledged that it might be in my best interest to see someone with some experience in this field.

No, I can be allowed to see a shrink who’s read the same texts I have, and that’s fucking it. And they refuse to transfer my out-patient ‘treatment’ to another hospital. It’s not even like I’d need a fucking ride. They would just need to arrange for an appointment to be made. They wouldn’t even need to mail my records, as they’re already digitized to my social security number and available from all the country’s hospitals – just in case I might be injured while far away from home. This is how public healthcare works.

There’s no fucking administration in transferring an outpatient who can transport herself to and from appointments. But no. I still get a no, even to see the resident expert which would not even require a hospital transfer, merely an internal one.

And now these sitty racist fucks raise a shitstorm about someone’s rights to be transferred because their fucking Islamophobic sensibilities are harmed by being TREATED FOR DISEASES OR INJURIES by muslim doctors!!!

WHAT THE FUCKING FUCK?!?!?!?

And here I thought doctors helped people. That sometimes – even most of the time – they cure people. And that this goes whether the doctor is Christian, Muslim, Atheist, Buddhist or whatever the fuck the doc is.

ARGH!

Some of us with actual real health problems and/or functionality problems (my health is fine – though right now my blood pressure is probably suspiciously high grrrrrr) need transfers for health reasons! Do you know what that is? Health reasons? They are factors that, if not taken into account, damage your actual health – physical or mental, or at least cause a lack of improvement.

And you fucking bigots are worried that you might be treated by a muslim doctor.

No, let me rephrase that, because it was clarified in the article, it is not being treated by a muslim doctor that is the problem. It is being treated by a muslim doctor, who wears a headscarf, because of what this headscarf symbolizes: “intolerance and subjugation” according to these asshats.

Yes, I can see how very intolerant and utterly subjugated these women must be to study hard to become doctors and to then work hard to get good jobs, and pay a fucking shitload of taxes, while working in a place where they will have to treat a bunch of thankless bigots, who would rather see them put on a plane and dumped over their own country without a parasuit (yes, someone actually said that a few years back), than be touched by their scarf-wearing selves.

Yes, I can clearly see how these women are intolerant and subjugated to the max.

And it would all be allright if these women did not wear scarves.

Seriously. That’s what they’re saying. They would feel perfectly fine being treated by muslim doctors without headscarves.

As if I’ll actually believe that.

No, I imagine they would just move on to the next physical hint that the doctor (or nurses -  imagine it goes for nurses as well) is of the Islamic persuasion and then demand that to be outlawed, or demand that the hospital use precious resources on removing the patient from such an offensive display of religion.

Technically we all have the right to refuse treatment by a doctor we do not feel safe with. And we all know what will happen to doctors whose patients continuously request to be transferred to someone else. That doc will lose hir job.

So this demand for treatment devoid of religious symbols is, in effect, just a ploy to make sure that muslim doctors get fired.

The Danish Doctor’s Association is backing their muslim members, of course, saying that the patients’ main concerns ought to be the doctors’ skills rather than the state of their hair. And one of their representatives said to the newspaper that it was, in fact, a fairly good thing to be treated by a doctor wearing a head-covering of some sort – especially if you’re hospitalised for something that will have lowered your immune resistances – as the headscarves are actually more hygienic than uncovered hair.

And while the rest of us hospital users are still fighting to receive competent treatment (honestly, my situation is similar to having an orthopedic surgeon treating allergies – it’s nonsensical), some exemplary and competent doctors are vilified and problematized simply, because a few racist and Islamophobic fucks don’t want to be cured and/or stitched up by people who do not share their views.

Yuck, I say.

Let them go home without a cure, then, and leave room and time in the doctors’ busy schedules for the rest of us, who will be grateful to be kept alive/taken care of/cured/put back together, even if our world-views are not the same.

/end rant

That did help a little with the rage. Now I just wish I knew what to do about this shit.

Originally posted on my Tumblr, now revised somewhat and re-posted here.

I have seen people chased off a forum because of bullying. I have seen people have tearful break-downs because of bullying. I have had those break-downs myself.

I have been bullied in meatspace – online I seem to have mostly escaped it, with a few notable exceptions I won’t be drawing into this post.

My point is: I write, not as an expert on bullying, but as someone who would like to think she has an ounce of empathy hidden away somewhere in the dark corners of her soul. (my what? I have one of those?!?!) I write, based on the observations I have made over the years, both in cases where I was bullied, but also where others were.

Bullying is incredibly harmful, let there be no doubt about that. Bullying kills. But let’s also be aware of the context in which bullying kills, because bullying is a much more complex thing than a bunch of mean kids saying a few nasty remarks to another kid.

When a person, who is by some order of magnitude marginalised, is bullied, the bullying does not stand alone. It stands as the out-spoken and sometimes violent arm of a society that does not approve of the way in which the victim was “different”. I put different in scare quotes, because sometimes simply wearing glasses is “different” enough for society to hate you. Bullying usually focuses on something that society has deemed an undesirable quality, even if it a feature or trait that is entire harmless. Thus pretty much anything that can be construed to be a flaw can be a focus of bullying. And with the exacting standards of today’s fashion and photo-retouching there will be plenty of perceived flaws to find. That means that not only identities such as our sexual orientation, our gender, our nationality, skin colour, culture, religion, disabilities etc can be focii for bullying, it can also be shallow shit like the ‘wrong’ hair colour, unfashionable clothes, being too skilled at stuff in school, not being good enough at those same things, being ambitious, being unambitious, looking ‘too’ good, not looking good enough, liking the wrong music/singer/film/actor/show/whatever. I could go on. All of these variables mean that in specific communities it will be specific groups that are exposed to bullying.

Have you ever seen a bully be bullied? Of course not. Because the bully belongs to the group of people, who live up to the standards of that community. Mind, the community can be very small, so in the school yard C will be the bully because zie belongs to the group who likes Sailor Moon, but when zie gets home the kids on the street will bully hir, because she goes to a different school than them. So in that sense a bully can be bullied, yes. But within the same community the bullies are never bullied themselves, because they belong to the group in power, by whatever trait or feature that defines that group.

Bullying is about power. Bullying does not work if the bullies do not have power, in fact, without powers they cannot be bulies. In that way it functions sort of like sexism and racism and other such -isms, where instead of prejudice + power you have meanness + power = ability to bully.

If you have no power, you cannot bully anyone (and if you’re not mean, you won’t – goes without saying), because they will laugh in your face and tell you you’re insignificant to them. That’s not very effective bullying. In order to efficiently bully someone, you must first take their power away from them. That is why schoolyard bullies are so quick to declare that telling an adult is like admitting defeat, and to threaten that it’ll be worst for you. If you’re going to tell on them, you have the power to make them stop. The moment they’ve convinced you that telling the adults would be a bad thing, the moment you won’t be telling anyone, that’s the moment they have the absolute power. That’s when the bullying become dead serious. Emphasis on dead here, because bullying kills.

Additionally, bullies pick on things that society view – or at least presents – as defective. This means that when glasses are unfashionable, everyone will know that wearing glasses is Bad, and when you get bullied for wearing them, you automatically know that you’ll receive no support, because you’re doing this thing that is Bad ie. wearing glasses.

The above paragraph does not take into account that sometimes it is the adults who bully the kids, and that’s even worse, because they already have the power. They don’t need to establish it like the school yard bully does. Most of the bullying I have experienced as a child were at the hands (or tongues, as it were) of adults – many of them my teachers/coaches.

Anyway. While one of the privilegedenyingdude memes (specifically the one attacking a specific Tumblr) could be construed to be an attempt at bullying, I have to say I disagree. Because the target of that meme was not a marginalised person in any known way. That is, the meme did not attack him from a place of power for a perceived and unacceptable difference of his, but rather attacked him for using his place of power to attack other people’s differences.

You can’t bully a bully by calling him a bully. The bully is the one with the power, and power cannot be bullied – power IS the bully, or at least the tool of the bully.

Sure, a lot of people got behind the meme that called a specific Tumblr out for being a privilegedenyingdude, but let’s face it: we can be a whole host of Tumblrs calling the bullshit out, but that bully will still belong to the same group as those who make the laws and enforce them out there in meatspace, he will still belong to the group of bullies who decide what’s what and what’s not. We know it. He knows it. And that makes this so-called bullying meme rather ineffective in all it’s non-bullying glory.

It was not a nice thing to post. Indeed it was not. But let’s not pretend that we should be nice when calling out privileged asshats, who have repeatedly proven that they won’t own their privilege. I sense a few bingo squares here. The “tone argument” and the “harming your own cause” squares to be exact (not scare quotes – citation quotes).

And frankly… if once in a while those who are usually the victims of the bully stand up and talk back, we all know that the classic school yard strategy is for the bully to call the adults to squash the resistance, and every attempt at explaining how “he started it” is moot. This is something we felt was unjust when those supposedly responsible adults did it to us as children, why do it to ourselves now? We are pulling a goddamn bingo square on ourselves, saying to ourselves and each other that we “should be the better/bigger person”.

We already are, dammit. We’re the ones fighting the bigotry. And calling a bigoted asshat a bigoted asshat is not bigotry. Nor is it bullying.

It doesn’t matter who started it. What matters is who has the power base. Because it is the power base that makes the difference in the effects of bullying.

And by now the privilegedenyingdude meme is gone. Why? Because the bully called the teachers to quash the resistance. A photo, legally bought to be used for a meme, but with a shitload of exceptions where the sellers of the photo retained the right to call back the use of the photo, if it were used for stuff of which they did not approve. Yeah… they recalled the photo, and claimed copyright infringement because a bunch of white male bullies complained that their victims were talking back to them.

Seriously… this is classic. This is the exact same situation that took place when S from my class was beaten up by the other boys in class every day. And on the day when he finally lost his stoicism and let them have it, one of the bullies ran and fetched a teacher. S spent the remainder of the week in the headmaster’s office – the bullies didn’t. S told them all that the bullies started it, but the teachers shot back: “Yes, but you continued it.” And that is apparently the worst crime of all. To fight back. To stand up.

The way society is constructed these days a fat woman cannot bully a thin woman about her looks, a trans woman cannot bully a cis woman about her gender presentation, a woman of colour cannot bully a white woman about her level of education, a woman with disabilities cannot bully an abled woman about her social propriety. They can tease, they can wheedle, they can snark, but they cannot bully, because bullying presumes a position in a hierarchy that they simply do not have. Take into a account multiple intersections, and you’ll find that bullying follows right along the same lines that oppressions do. Imagine that, there’s a connection somewhere in there – not hidden very well.

So while lots of not so nice things are said and written about some people, it just does not constitute bullying if it is not backed up by the power to exclude them from situations and places they want to be.

This, of course, does not negate the hurt a pile-on or even simple teasing can cause. And it does not make a pile-on the right thing to do nor an okay thing to do.

[trigger warning - descriptions of violence]

But where a pile-on might have the effect of pushing someone over on the sidewalk ie. it causes a minor annoyance like if you stumbled over a crooked pavement stone, bullying is running them down with your car, backing over them once more, making sure that no ambulance is called at all, and possibly kicking them a few times for good measure, just to make sure they never return.

[trigger warning end]

Where a pile-on is mean, indeed, bullying is psychological and emotional violence, and sometimes also physical violence.

And that’s one heck of a difference that we ought to keep in mind.