Category Archives: General-personal

How I got the NHS mental health system to work for me

I’ve been talking to a few people about mental health care on the NHS, and how difficult it can be to get the right treatment. After I told the story of my experiences, a couple suggested I write it somewhere permanent because it could be useful as a guide – so here it is!

The system

The mental health system (at least where I am, and for a lot of people I’ve talked to) is based on a sort of ‘ladder’ of different levels of treatment, where you have to go through one level before you can move to the next. This is probably a really useful system for people with acute or minor needs, like a period of stress or mild depression. It makes sense for those people to see a counsellor for a few sessions of basic CBT at first, because there’s a good chance that will be all the treatment they need.

But it’s not a good system for people with complex and long-term mental health needs. If you need more intensive or advanced treatment, you still have to go through all the lower levels first. If the duration of treatment isn’t enough, you just have to keep on cycling back through them again. That means wasting time repeatedly seeing new people when you know it won’t be for long enough to help you, having to explain yourself over and over again, and lots of waiting to move from one level to the next. If at any point in that process you are deemed to not be ‘committed’ to the treatment, you’re liable to be discharged and will have to start from the bottom again if you still need help.

Trouble is, if you are disillusioned with the system and have been trying to get help for a long time, you’re even more likely to be perceived as not committed to treatment. I know that I looked like I wasn’t committing, for a bunch of reasons.

  • Every new person I saw, I knew I was limited to small number of sessions. And I knew from experience that it wouldn’t be enough to make any progress (maybe not even enough to fully explain my needs!). It was hard to put in the effort of getting to know a new therapist or to start doing really difficult work when I knew I would soon be dropped and sent somewhere else.
  • I’d experienced basic CBT before, and knew from experience that it wasn’t helpful for me. It was hard to bother doing tasks and techniques which I’d tried many times without success, and which were clearly designed for people with minor or simple needs.
  • The very nature of my complex needs was in itself a factor. I’m autistic, and that means I process everything differently, which is part of what makes my mental health so complicated to deal with. But it also means that I express emotions very differently (and generally less), and have trouble describing or understanding them at all. So I would seem to not be feeling things I said I was, or contradicting myself in what I said, or just not doing the tasks I was given.

All of those things made me look, at first glance, like someone not at all committed to treatment or interested in getting better, not bothering to do the work needed, and exaggerating or misrepresenting my problems.

My method

In the past, I’d always assumed I should defer to whoever I was seeing at the time, and let them choose what they thought was most relevant or important. I figured, they’re the professionals, they can work out what I need and how to achieve it. But in all my experiences, that was a generally unsuccessful approach. People misinterpreted my communication and drew inaccurate conclusions, or they started out with simplified assumptions that didn’t apply. The general pattern seemed to be that people didn’t realise just how much I was struggling, and so they tried to treat a more minor version of the problems I had.

I’ve spent about ten years so far being juggled around various mental health services, being misunderstood and not getting the right help. Luckily, having years of bad experiences gave me one superpower: knowledge. I know about myself, my mental health, the mental health system in general, the many and varied types of treatment I’ve attempted, and the responses of the countless different professionals I’ve met. I know much more about those things than a typical patient with simple or minor needs would – and certainly more than someone who was uninterested in getting better.

In the end the method that actually worked to get the treatment I needed was to stop deferring to the ‘experts’, and start wielding my knowledge to get them to listen to me. The next time I went back onto the treatment ladder, I was upfront and stubborn about several things from the start:

  • I needed to see someone particularly specialised.
  • I needed to see someone for a long time.
  • I wanted to make progress, but the work needed is very difficult for me.

In fact I wrote a document which I gave to the first few people I saw, because I don’t communicate well in real-time. I wrote:

  • Details about my history and how everything had been ineffective so far.
  • Outright demands about the help I needed (including an explicit statement that a short course of basic CBT would not be remotely sufficient and wasn’t what I needed).
  • Honest information about what made me a complex case, like my autism diagnosis and the fact I struggle with some of the skills needed for traditional treatment.

Some of the first people I saw found it unsettling that I was so upfront about these things. One particular person, a low-intensity CBT therapist, tried to discharge me. We did not get along. She seemed to refuse to believe that I knew about myself, and insisted on giving me low-level CBT tasks that simply don’t work for me. When I explained that I struggled with those tasks because I find it difficult to distinguish between thoughts and feelings, she told me I just needed to try harder and ‘stop overthinking’.

This is where the stubbornness came in especially handy, as well as the fact I’m lucky to have a strong support system. With the help of my parents, I complained to the service and met with someone more senior. She took some convincing, but eventually she acknowledged that I was committed to treatment and that I did need more intensive therapy than the person I’d been seeing.

Finally she agreed to refer me to secondary care, which is the step beyond the usual treatment ladder. She made vaguely threatening implications that they might refuse the referral if they didn’t deem me needy enough, and that I wouldn’t be able to go back to primary care if that happened. But I already knew that primary care wasn’t remotely meeting my needs, so I had nothing to lose.

Secondary care accepted my referral and took me on. I am now seeing a specialised therapist with – most importantly – no strict limit on the number of sessions. It was tough getting here, but the treatment I’m receiving now is way out of the league of anything I’ve had before.

My disclaimers

This method is not necessary for everyone. For lots of people, short blocks of CBT are enough to handle their mental health needs – and that’s great! If that’s the case, you can commit fully and do the work you’re recommended, and make progress to feel better. My experience has absolutely no bearing on situations like that, which presumably make up the majority of mental health service users.

My experience – and therefore my advice – is a lot more niche. It’s for people who have more complex and long-term needs which are not currently being met. In that kind of situation, it can be very difficult to get into the right part of the system – because the system is designed to keep people in the lowest level possible. When that is the case, being explicit about what you need (and what you don’t) is a way to demonstrate commitment without having to go through endless levels of treatment which do nothing for you, or having to misrepresent and simplify your experience to fit it into those levels.

I’m not saying this method is foolproof. It’s certainly risky, because if you can’t express your certainty and experience clearly enough then it will just come across as being completely resistant to treatment. Some practitioners (like the troublesome one I saw) will find it confrontational and become defensive – an understandable reaction when you are repeatedly telling people that they can’t help you. But if you can be honest and persistent (or you have people who can help you do that), it can enable you to take back control over your care.

I also don’t want this to come across as a negative view of the mental health system. The NHS is an incredible thing, I can’t imagine life without it. The NHS mental health system specifically is also an incredible thing that helps many people. I absolutely don’t want to discourage anyone from seeking mental health help from the NHS – quite the opposite! I just want to help everyone get the best care they can. And that includes anyone who might be like me, and having trouble finding their way to the right treatment. Hopefully reading my experience may be a small help to even a few people.

 

Nature

Nature is important to me. The main reason I’m making this post is that I sometimes forget that, which I don’t like doing.

I’ve been into nature as long as I can remember. I was always interested in animals as a kid. The biggest focus was horses when I was younger, followed by developing an interest in birds and other more local wildlife. I have an affinity for farm animals too – just ask anyone how I react to walking past fields of sheep or goats (hint: it often involves the words “I love sheep/goats”). I’ve always liked to climb trees, and being in forests feels instinctively right. I love to be near fresh water, and sometimes feel like I’m fighting the urge to jump right in when I stand at a lake.

I have a complicated relationship with seasons and the weather. I’m sometimes very affects by particular weather conditions, and I tend to feel unsettled at times when the seasons are changing most quickly. But I also know that this pattern of seasonal change is instinctive for me, and it would probably feel much more wrong for me to live somewhere like the equator where seasons are almost nonexistent. I don’t consider myself religious or spiritual, but I celebrate solstices, equinoxes, and cross-quarter days, because marking the cycle of nature feels important to me.

I’m not describing these things to mark myself out as particularly different or unusual – I know that lots of people feel a personal connection to animals, plants, or nature in general. I’m really just writing this for myself, as a reminder that these things are important to me.

Sometimes I forget, because I’m not always able to ‘connect’ with nature as much as I ideally would. It’s difficult for me to get out into nature – anxiety, executive dysfunction, and general trouble with travelling are not particularly conducive to a life in the wilderness. But I try not to let myself feel guilty about that. Being sometimes unable to connect with nature doesn’t mean nature isn’t important for me. In the same way as being, say, physically unable to get to church wouldn’t make someone any less religious.

I have a connection to nature, and – like everything in my life – that connection is modulated by my disability. I say modulated, because it’s much more complicated than just being “limited” or “prevented”. Aspects of my connection with nature are because I’m autistic and anxious.

Going out with my camera to photograph birds is probably one of the closest things I experience to meditation. I absolutely see the value of things like meditation, but they’re also generally not suited to me. I find it hard to keep still, I feel unsettled and stressed if I don’t have enough sensory input, and my mind has a constant stream of thoughts and anxiety ready to fill up any gaps I make by ‘clearing my head’. Traditional meditation is basically an unpleasant experience, and doesn’t do anything for me.

But going out birdwatching is a pretty close alternative. I get to move around, I can focus my senses on looking and listening out for birds, and it’s calming but still engaging enough to prevent the undercurrent of anxiety from filling up all the space by default.

It’s also a pretty ‘antisocial’ activity, in the best way. It’s not that I can’t or wouldn’t want anyone else to come with me, and it’s not that I don’t enjoy sharing the photos I take. It’s just that those things are completely incidental to the activity. I go looking for birds because it’s something that I enjoy, and that’s it. While I’m walking through the trees with my camera, other people are irrelevant.

It doesn’t matter whether there’s anyone around, or whether I’m going to show my photos to someone else, or whether I’m unhappy about some relationship or another. It’s something that reinforces my own edges from within, which is not generally an easy thing for me to do. So this post is my reminder, to myself. Nature is good for me.

IMG_1139

 

 

 

 

 

Change of direction

Last year, I wrote a post about what I wanted from my academic future. I cockily ended that post with “I’m sure I won’t change my mind!” – I should have spotted the potential for irony. Although arguably, I’m not changing my mind. I’m not regretting the decision I made at the time. It’s just that new information and experiences have arisen, and now I am making a new, different decision.

I’ve almost finished the first year of my distance-learning degree, which means it’s time to choose the modules for my second year. A few weeks back, I was in a bit of a crisis about the decision. I was torn (as I have been for most of my life) between psychology and physics/maths.

I say physics/maths, because they are in the same category to me. They fit together and they belong together, and it’s the combination of the two that I’m interested in. Psychology, on the other hand, does not fit together with them. They are two very incompatible subject areas. And don’t bother trying to find a compromise, either. I don’t care about “the psychology of the universe” or “the statistics behind psychology”. I am interested in them in two extremely different, separate, and irreconcilable ways.

Then I had something of an epiphany. I realised that, while I am interested in both areas, I only feel a need to contribute to existing knowledge of psychology. I want to gain new information about autism, and improve the way that people understand it. Whereas I just want to learn about physics. Seeing as my ideal career (in either subject) involves higher study and eventually research, it makes sense that I should choose the one I feel the need to contribute to.

But, then, not long after that epiphany, I had another one – sort of. I watched The Theory Of Everything (the film about Stephen Hawking). And I was overcome with the urge to be a physicist. Everything about the film just made me think “this is the kind of life I should have” and “those are the people I belong with” and “these are the things I need to learn about”. I was reminded just how strongly I feel about physics, in a way that I’ve never felt about psychology. I realised that there’s no point in going with a ‘practical’ choice if it goes against the way I actually feel about the options.

There’s also the fact that it’s possible for me to spend time contributing to psychology without getting a PhD and being a researcher. I’m doing that right now! I am blogging, surveying, working on a book, and I’m about to become an assistant presenter for educational courses about autism. By virtue of my own autisticality, I am already a kind of psychology expert. I don’t need to worry about losing touch with my interest in psychology. I’m always going to be autistic and it’s always going to be relevant.

Whereas I have been reminded that it is worryingly easy for me to lose touch with my interest in physics. My science module this year finished slightly earlier than my psychology module. And in the few weeks since I finished studying it, I am already missing it! But it’s difficult to stay involved in science at the level I am interested in, without formally studying it. I am going to carry on blogging and writing and thinking about autism no matter what else I’m doing with my life. But if I really want to be involved in physics, then I have to actually make it happen.

So, I’m making it happen! I’m switching to a specific Maths + Physics joint honours degree, and I’m going to be a physicist.

…I think.

 

The gender talk

I haven’t explicitly talked about gender on this blog before. I haven’t exactly been avoiding the topic, it just never seemed relevant. But then as I avoided mentioning it for longer, it became a Big Deal, so I avoided it even more.

Terminology 101

Before I dive into talking about myself, I’ll start with explaining some words. I’m going to try to make this aimed at absolute beginners who have barely heard these words before.

I’ll start with possibly the most important distinction of all: sex vs. gender.

  • Sex is the physical characteristics of a person’s body. It’s defined based on a combination of traits (hormones, genitals, among others). Most of the time people can be neatly classed as either male or female – all those traits line up. But at least 1% of the population are intersex, which means they aren’t unambiguously male or female according to typical definitions.
  • Gender is a personal, internal sense of identity. Everyone experiences it differently – it is, by definition, subjective. But some of the things that may go into making up a person’s gender identity are:
    • The pronouns that feel accurate to them.
    • The words and labels that feel accurate to them.
    • A sense of belonging to a particular group.
    • The sex characteristics they feel comfortable with (whether or not those are the characteristics they currently have).
    • …among many others.

Sex is very rarely actually relevant. The only people that really need information about a person’s sex are their doctors (and even then, only sometimes!), and their sexual partners (likewise!). In any other situation, it is gender that is relevant. Gender tells you how a person should be referred to, how they should be treated, what groups and facilities they belong in, and all of that other important stuff. Gender is also way more complicated, and it’s where most people get confused – especially if they’re never thought or learned about it much before.

It all starts when you’re born, and the doctor picks you up and says “It’s a ____!”. At that point, you have officially been given your assigned-at-birth gender. That just means that someone assigned it to you when you were born. You didn’t pick it yourself (you were a baby!), someone else picked for you. Generally when people assign gender, they base it on observable sex characteristics (the doctor looks at the baby’s genitals to decide).

For the majority of people, that’s the whole story. They spend their life comfortably agreeing with the doctor’s assigned gender. Those people are called cisgender. That just means their actual gender identity is the same as the gender they were assigned at birth. Because babies (except for potentially a tiny number of exceptions) are always assigned as either ‘boys’ or ‘girls’, cisgender people are always binary. That means a gender identity that fits one of the two most common options – men and women.

For some people, they later realise that the doctor’s assigned-at-birth gender was wrong. Some people might discover that as very young kids, other people don’t notice until they are adults, or any range of ages. Those people are transgender. Their actual gender identity is different from what they were assigned at birth. When transgender people realise that their gender identity is not what they were originally told, they may do various things to help themselves feel comfortable. Things like:

  • Changing their name and the pronouns they go by.
  • Changing the groups and facilities they use.
  • Changing some of their physical sex characteristics, e.g. through surgery or hormone treatment.
  • …among many others.

Some transgender people are binary – men or women. Others are nonbinary – which just means, not simply men or women. People might identify as nonbinary if the various factors of their gender identity do not match up (for example, they might prefer to be called ‘he’, but prefer to have female sex characteristics), if they have preferences which don’t fit either option (for example, they might prefer to be called ‘they’ instead of he or she, or to have sex characteristics which aren’t considered either male or female), if their gender identity changes over time (for example, they sometimes feel like a man and sometimes like a woman). There are countless different ways to be nonbinary! And there are countless labels which describe all those different types of nonbinary. Things like: agender, androgyne, genderfluid, and many more. I couldn’t possibly describe all of the possibilities.

I’ve made a diagram to summarise how all those different words are connected with each other:

Summary

 

So what?

Hopefully my general explanations above have demonstrated why gender matters, and what it means. Some basic guidelines for being a good person when it comes to gender:

  • Listen to people’s own description of their gender (not anyone else’s) – and believe them. It doesn’t matter if you don’t understand (but try to understand).
  • Refer to people in the way they choose – their name, their pronouns, and other words like ‘man’/’woman’/etc. It doesn’t matter if it’s difficult to get used to, it’s basic courtesy.
  • Don’t ask questions you would be uncomfortable answering yourself. (Hint: don’t ask people about their genitals – that’s never OK).

I’d also like to add a disclaimer here. Everything in this post is controversial and debatable. Some people will disagree with me about my definitions or my categories, some people will be upset that I’ve missed things or think I’ve included things that aren’t necessary, some people will feel their identity can’t be described using my framework. All of that is important, and you should always, always prioritise an individual’s feelings and preferences over some general definition you have. I’ve tried to be as neutral as possible, but I’ve also been necessarily brief and I couldn’t possibly explain all of the nuances of this topic in one post. As long as you follow the ‘good person’ rules above, you should be fine. Never stop learning!

About me

I am agender. That means I don’t have a gender identity – I’m not a man, I’m not a woman, I’m not both, or in-between, or a mixture – I’m neither. Agender is a type of nonbinary identity. Nonbinary, in turn, is a type of transgender identity.

I’ve handily highlighted myself on the diagram from above:

Me

So, for readers of this blog, the relevant information about me is simple:

  • Don’t call me a man or a woman, or other types of gendered words. You can call me a person!
  • Don’t call me he or she. Use singular ‘they’, in the same way you’d use it for an unknown person. For example: “They wrote a post for their blog and edited it themself”.

I hope this has helped you learn something, and maybe cleared up some misconceptions!

 

Real-time interactions

Real-time

I have trouble with real-time interactions. By ‘real-time interactions’, I mean the kind of situation where people are responding to each other directly and immediately. That means things like: talking face-to-face, on Skype, on the phone, and (sometimes to a lesser extent) using text or instant messaging.

I have trouble with them because they are not well-suited to my communication style. I am slower to process the things other people have said, and need even more time to formulate my own responses. I prefer delayed interactions, like emails, because you are expected to make a slow and thoughtful response, rather than an immediate one.

My trouble with real-time interactions is not obvious though. If you were having a face-to-face conversation with me, you probably wouldn’t realise I have difficulty. In fact, you’d probably say that I was very articulate (people have described me that way before), and be surprised that I’m saying this.

Automatic speech

The truth is that my mouth is a lot better at real-time interactions than I am. That means I’m good at automatically responding to communication, using words and phrases that really sound like they mean something. If someone says hello, I say hello back – I don’t think about it, it’s practically a reflex. Automatic speech like that is probably familiar to everyone to some extent.

But for me it can extend to much more seemingly-complicated speech. In an unplanned conversation, I often end up feeling like I’m just watching myself and wondering what on earth I’m talking about. I’ll find myself saying things which I don’t agree with, which don’t make sense, or which actively contradict things I’ve said before. And I say them because my brain is just mashing together elements of the context (like whatever the person before me just said) with an appropriate inflection and hoping that it sounds about right.

For whatever reason, my brain taught itself to make me look like I’m communicating whenever I am having trouble. Someone with a similar level of communication could have easily developed such that they just didn’t speak, instead of making non-communicative speech like I do. I don’t know why I do automatic speech and some people don’t, but I think there’s a lot less difference between us than there might seem.

Bad odds

I’d estimate that in an unplanned real-time interaction with a person I don’t know (I cope better with more familiar people), my apparent communication is about 20% accurate. That means that about 20% of the things I say are things I actually mean, and that only about 20% of things I want to get across actually do get across.

Imagine a person who could only speak about 20% as much as most NT people – that’s how effective my communication is some of the time. Don’t seem so articulate now, do I? In some ways, it’s handy to be able to ‘pass’ as NT in that kind of situation. It’s a lot easier to make it through a brief and inconsequential encounter if I can smooth things over with automatic ‘NT-speak’.

But in other ways, I sometimes imagine it would be better if I actually did only speak 20% as much in that kind of interaction. At least the things I did say would be accurate, so I wouldn’t have to worry about accidentally lying or talking nonsense. It would also mean that my communication difficulties would be a lot more obvious to people, and so they would be more likely to believe me when I say I can’t cope with real-time conversations.

Solutions

My usual solution is to try and make interactions as favourable to me as possible, to prevent automatic speech from kicking in at all. It’s worse if I’m in a busy or stressful situation, if there are a lot of people around, or if I’m talking about something that makes me nervous or uncomfortable.

The biggest single factor is that the interaction is unplanned or unexpected. I can handle scripted situations like buying something from a shop, because I can plan exactly what I need to say and I know what to expect. Some of my most memorable disastrous conversations have been answering unexpected phonecalls, or being abruptly taken aside for a ‘chat’ by someone. Most of these things are made worse in conversations with strangers, which are generally unavoidable.

But there are also situations when automatic speech happens with people I know, like family. Things like parties and gatherings, or difficult and uncomfortable topics can trip me into NT-mode even with people I really trust. I don’t know if it’s obvious from the outside, but it feels quite obvious from the inside. If you’ve known me at my most comfortable, then my NT-mode will be conspicuous, because I will seem much less autistic than usual! If my responses are as snappy and expressive as NTs’ usually are, it’s a good bet that I’m not in full control of what I’m saying.

The ideal way for other people to react to that would be to change the situation so it’s closer to my communication ideal, but that’s not always possible. If that fails, then my only advice to people interacting with me is: don’t take anything I say too seriously! I am very happy to be asked “Did you mean that?” if I say something that’s out of character or doesn’t make sense. It gives me a chance to actually process what I said, and a chance to take it back or correct it if I need to. I think it’s counter-intuitive for NT people, but anything I communicate in writing is always more reliably accurate than anything I communicate through speech.

Internet people

What it means to be an Internet Person

The internet is a really important part of my life. Sometimes I feel embarrassed about that, but I try not to.

The reason I sometimes feel embarrassed is because people who don’t rely on the internet as much as me find it incomprehensible. And the easiest response to not understanding something is to criticise or insult it. The truth is, I find it incomprehensible that there are people who don’t use the internet at all.

If you don’t use the internet as much as I do, you probably reacted to reading that by thinking “How sad, you can’t entertain yourself without the help of computers”. But it’s nowhere near that simple. Yes, sometimes I use the internet to entertain myself when I’m bored. And there are times when that could be replaced with a book or going for a walk, but I choose the internet because it’s easier or more convenient. Sure, feel free to consider me lazy for that – I’m sure it’s sometimes true.

But that is by far the least important use of the internet for me. Here are some things I wouldn’t have or do if it wasn’t for my use of the internet:

  • I wouldn’t know, or be able to communicate with, many of my closest friends.
  • I wouldn’t know how to best care for my pet gerbils – and might not even have them if I’d never learned what good pets they make.
  • I would never have progressed further in knitting than making a misshapen rectangle.
  • I wouldn’t be learning Swedish right now.
  • I wouldn’t be able to motivate myself to shower or leave the house.
  • I wouldn’t be studying my degree.
  • I wouldn’t know that I was autistic. I wouldn’t know other autistic people. I wouldn’t be writing for and learning from other autistic people.

In short, I wouldn’t be doing much at all.

Why I’m an Internet Person

I know that some people don’t use the internet much – some people don’t need it much. But there are a lot of different types of people who the internet is well-suited for, and I just do happen to be in lots of those groups.

  • Shy people.
  • Introverted people.
  • People who communicate better in writing.
  • People who find it difficult to go out.
  • People who like reading.
  • People who like learning.
  • People who have trouble making friends.
  • Autistic people!

I know that last one is a bit of a generalisation. They’re all generalisations, of course. It’s just that I think a lot of the reasons I benefit so much from using the internet are related to being autistic. Some people might think it’s sad that most of my closest and most fulfilling relationships are with people I’ve never met. But it’s not that I’m choosing that over face-to-face relationships. It’s that I wouldn’t have those relationships at all if I wasn’t using the internet.

What I get from being an Internet Person

I was talking to my brother the other day about the computer game Minecraft, which I’ve recently started playing. I mentioned that I had been playing a multiplayer game online, and he said “But with who? How do you find people to play with?”. And then he paused and said “…You know people, don’t you.” My brother, the most sociable, gregarious, and charismatic person I’ve ever known – he would have trouble finding someone to play Minecraft online with!

I know that’s not the best example of a vital social skill. But I think it’s representative of the general way that I am able to use the internet to my advantage. Playing Minecraft might not be the most enriching, productive, or sociable use of my time. But playing it with other people, where I can talk to them and work together, is still better than playing by myself.

It might not seem like much of a skill, but I think effective internet use can be really valuable. I read a post recently (be warned for a bit of swearing, and confusing formatting if you aren’t familiar with tumblr), which is part of what prompted me to write this one. My ability to find friends to play computer games with is just one minor example of the way I can use the internet to my advantage.

All those other things I listed are yet more examples. And that linked article mentions another big one: rapid skill acquisition. My default when I don’t know something isn’t “never mind then”, it’s “I’ll look it up”. I find it truly baffling that there are people who think easy access to information online can possibly be a bad thing. But I’m sure those same people find it baffling that the internet can be so important to me.

I spend a lot of time on the computer, and that’s OK. I’m an Internet Person.

Autisticality

The word ‘autisticality’ was actually coined by my friend. Although I’m sure other people have said it before too; it’s quite a natural word to create, really. It could just as easily be “autisticness”, “autistitude”, or even – “autism”. Oh, wait.

In theory, autisticality means just the same thing as autism, right? “That kid’s autism affects their social skills”, “that kid’s autisticality affects their social skills”. And yet, it’s different somehow.

Maybe it will make more sense with some other examples. How about a broken leg:

  • My broken leg means I can’t walk.
  • My leg-broken-ness means I can’t walk.

They have the same meaning in the simplest way. But “broken leg” is very concrete and specific. Whereas “leg-broken-ness” is abstract, like it’s one-step removed from just “a broken leg”. It makes it sound like “leg-broken-ness” is some kind of all-encompassing permanent aspect of the person. That’s why the second option doesn’t make much sense – it’s actually just one small and temporary part of them. In this case, it has one specific effect: making them unable to walk.

Autism/autisticality works the same way, but in reverse:

  • My autism means I am prone to anxiety.
  • My autisticality means I am prone to anxiety.

The first one sounds like “my broken leg means I can’t walk”. It feels like saying “my specific, temporary, and abnormal medical condition gets in the way of me functioning like I usually do”. The second one feels like saying “this overall aspect of me defines the way I am as a person”.

There is a person who can walk, temporarily disguised by the broken leg. But there isn’t a non-anxious person, disguised by the autism.

There is just a person, and autisticality.

Binary trust and friendship

My ability to trust people seems to be binary. I don’t have the capacity for complex in-between levels of trust or closeness, like “acquaintance”, “friend”, or “close friend”. Everyone in my life can be sorted into one or the other.

By default, strangers start off as ‘untrustworthy’. The untrustworthy state has certain characteristics:

  • I don’t automatically believe things they say, unless it’s supported by evidence or by a ‘trustworthy’ person.
  • I don’t expect them to honour commitments or keep promises.
  • I don’t tell them anything about myself that I consider private, personal, or important.

It takes a long time for someone to become trustworthy. I only started properly trusting my newest friend from college after almost two years of spending time together every day. That in-between period consists of me being cautious and guarded, while observing the other person to gather evidence of trustworthiness. When I eventually decide to trust them:

  • I assume they are telling the truth and believe the things they say.
  • I expect them to honour commitments and keep promises.
  • I will tell them anything about myself that I want to.

I think my binary trust state is a result of a combination of different things. Part of it is probably autistic black-and-white thinking, part of it is having different social skills and standards to NT people. And another part is probably a learned defence mechanism, as a result of having so many negative social experiences in the past.

When I like someone, I am immediately desperate to get to know them. I don’t see the point in waiting around with small talk, when I already know that I like them enough to make friends. But this method doesn’t tend to work with NTs, because they get freaked out or confused by it and things go wrong. So as a result, I’ve taught myself to suppress that urge, and instead to be very cautious in order to protect myself.

Binary trust also protects me from good relationships which go wrong. If I’ve classified someone as trustworthy and they break that trust, they are demoted permanently. This happened with a secondary school friend after I found out they lied to me.

The interesting thing is that my trust state for someone doesn’t have that much of an impact on what the relationship actually looks like from outside. When I stopped trusting that secondary school friend, we didn’t stop being friends. They probably didn’t even realise anything had changed from me! I was still happy to spend time with them and have fun together. I had just lowered my expectations, so I no longer believed things they said without evidence, or expected them to keep commitments, or told them anything more about myself that was important.

Similarly, when I eventually classified my college friend as trustworthy, they probably didn’t notice much difference. I had changed my rules for my interactions, but the rules themselves aren’t the only things which define the interaction.

I think the main reason for this is that I’m an extreme social mirrorer. When I made my secondary school friends, it happened because they took pity on me standing around by myself. They immediately started treating me as a friend, and so I reciprocated. Even though it was still another year before I properly classed them as trustworthy, my behaviour matched theirs straight away.

Similarly, I mirrored my college friend. But in this case, they were extremely reserved, and so I was too. Which made it even harder for us to become friends! And when I eventually decided they were trustworthy, things didn’t change much because I was still mirroring them and being reserved. It just meant that if situations arose in which I could e.g. tell them something about myself, I was allowed to do that under my new rules.

It’s only in recent years that I’ve noticed this binary trust state. I’m not sure if that’s because it’s a relatively recent development, or because I’ve just never been aware of it. Probably a mix of the two. It’s strange to think that other people don’t do this, though. It’s hard to imagine being able to have complicated rules that are different for every person in your life. How would you keep track?!

Big news and important conversations

I have trouble with important conversations. I’m sure everyone does, really. That’s why they’re important after all: because they’re difficult but have to happen anyway. But I think the trouble I have is sometimes different to other people.

Recently, I got some exciting news – a knitting magazine commissioned me to design a pattern. When I shared the news with my family, I’m pretty sure I did it wrong! I mean, I didn’t upset or offend them or anything. But when I told my brother, he exclaimed that I didn’t tell him as soon as he came home and instead waited until a bit later. And my mum said “You never tell us anything!” because the news was surprising.

It was just a regular example of autistic-NT mistranslation. I’ve been thinking about it a bit, and I still can’t figure out what would have been different for them to not have reacted in those ways.

How are you supposed to make news less surprising? Should I have eased into the conversation by saying “So… I’ve been knitting a lot lately…”? The main point is still pretty much one sentence-worth of information, so I don’t see how you could do it in a less abrupt way.

And it’s really hard to know when is the right time to initiate a conversation. Should I have blurted it out the moment my brother walked through the door? Surely not! I thought that I was waiting an appropriate time so as not to seem self-centred and to let him settle in back at home before bringing up something major.

I’m not really bothered by this. I’m perfectly aware of the fact that it’s hard for me to communicate with people, and sometimes it goes wrong and sometimes I’m not always sure how or why it went wrong. I just find it interesting. I guess this is an area where I’m missing out on the innate rules that other people seem to have. Rules like:

  • How to correctly judge the importance of different topics.
  • How to talk about topics of different levels of importance.
  • Which levels of importance are required information for which levels of relationship.

This is yet another reason that I generally prefer text-based communication. It’s so much easier to introduce a new topic via, e.g. email or text. It’s perfectly natural to add a new point whenever you think of it. You don’t have to worry about choosing the correct time and situation for the other person to talk about it, and worry that they might be busy or stressed or distracted. They get to make that decision, because the interaction is delayed and so they can choose the right time to work on their response. It seems so much simpler that way. In a face-to-face conversation, both people are trying to carefully think about both people at once. That’s twice as many people to stress about!

Choices

Recently I’ve been thinking about my academic future. I started a distance-learning degree in October, and I quite quickly decided to switch from part-time to full-time. Which means deciding which course/s to add to my workload, because the degree is totally open – so every course is optional.

The course I’m already doing is in science. The main things I was torn between for my next course were maths and psychology. Maths has always been my best and favourite subject. But psychology is important to me because I want to learn about how people – and especially autistic people – work.

At first glance, it seems like maths should be the first choice. It’s been my strongest subject since before I can remember. Anyone who knew me as a kid would always say maths is what I “should” be doing. And I can understand that. It’s even what I think instinctively. But when I think about it a bit more carefully, that’s not the case.

Maths is really important to me. It’s pretty much the first language of my brain. When I reach for an analogy, I reach for mathematical concepts without even noticing. When I’m trying to find a way to understand something, I’m really finding a way to turn it into maths so that it can fit in my brain.

But that doesn’t actually mean that I should be studying maths, or that it’s necessarily my favourite or most important subject. A person who thinks in words does not assume that they want to study language. They use language to process whatever they do study. It’s the same for me, with maths. No matter what I learn or think about, I will be using maths constantly. So I don’t need to worry that, if I don’t study maths, I might lose one of my favourite subjects.

Whereas that is more likely to be the case with psychology. I think about autism a lot, but it’s the subject of my thoughts – not the language of my thoughts. Which means that if I do want to think about autism, I have to actively decide to.

So, I’ve decided on a psychology module. Part of the reason I’m posting this is so that I can read back over it if I start doubting my decision again. But I don’t think I will!