Category Archives: General-personal

My special interests

What is a special interest?

A special interest is like a lens through which the whole world is better. It’s not just really liking something, or even constantly wishing I could be engaging with it when I’m not. When a special interest is active, I actually am engaging with it all the time, no matter what I’m doing. It’s constantly on my mind and everything I experience is processed through it and related to it. And that doesn’t necessarily mean I’m distracted all the time (although I might be). Sometimes it can actively help me concentrate, understand, or enjoy something.

It’s absolutely not voluntary, I don’t choose what they are or how or when they happen. I think finding a new special interest is a bit like getting to know a person. It’s different every time – sometimes the first moment you meet them you know you will get along. Other times they seem unremarkable at first but every new thing you learn about them makes them more interesting. And you can’t decide who you will become friends with and who you will dislike, it just happens.

For me, the key feature of a special interest is about learning. I have an insatiable desire for information about a subject, and the joy of absorbing and organising that information is unparalleled. The more information I find, the more fascinated I become – like a feedback loop. If something ‘gets me started’, then I can easily end up excitedly infodumping everything I know about an interest to someone. But most of the time, I don’t have any need to share my interests with others. In fact, it sometimes surprises people when they learn just how much time I spend thinking about something which I rarely talk about.

I didn’t quite ‘get’ the idea of a special interest when I was first learning about autism. The only information I could find was the stereotype of the autistic kid being obsessed with memorising train timetables. I’m writing about some of my special interests here, in the hope that others might learn something, or find something to relate to. Mine have varied widely throughout my life, and most of them don’t have any connection to each other – so I’ve chosen a selection!

Horses

This is probably the oldest interest. I collected books about horses and learnt everything I could about them. I wasn’t interested in the idea of riding them, or even having much to do with them in reality. I loved the amazing way their legs moved and the sound of their hooves on the road. I spent so much time drawing and re-drawing horses, perfecting individual features like the shape of their faces and the feathering on their hooves. Nowadays pretty much any animal I try to draw will be based on the horse ‘template’ because it’s so fixed in my head. I still get incredibly excited when I see horses walking down the road, and I’m still fascinated by the way their legs work and the way they look.

Stationery

I’d say this is the longest-running interest. For my entire life I’ve been fascinated by stationery. The most exciting part of school was buying and organising all the stationery I was going to use. I spent hours planning my filing systems and organisational arrangements, deciding exactly which folder to use for what and preparing refill pads and dividers. Even way back before I actually needed to use my own stationery for school, I would collect and catalogue it. I’d plan out elaborate systems and projects just so that I could buy and arrange stationery. This interest is just as active as it’s always been. I still get a thrill from planning a new system, and buying stationery is one of my main sources of ‘retail therapy’.

Chernobyl meltdown

This one is a lot more recent. It started very suddenly when I came across an article about Chernobyl. I got ‘sucked in’ and immediately started devouring everything I could find on the internet. My trek through the Wikipedia article led me on to related information about nuclear reactors, other meltdowns, the dangers of nuclear radiation. It was an intense few days and then dropped off fairly quickly. But I’m still fascinated by it and could easily find myself ‘sucked in’ again. If anyone were to bring it up in conversation it would probably be difficult for me not to infodump everything I’ve ever learnt about it.

Baking

Another recent one, this started a few years ago. I became obsessed with figuring out the fundamental ratios that defined recipes, and working out exactly how the chemical processes in baking worked. I spent a lot of time doing research online and from books, and a relatively small proportion of time doing actual ‘experiments’ with baking. This became dormant when I sort of ran out of basic foods to learn about. Once I’d figured out the definitions of ‘muffin’, ‘cake’, and ‘bread’, I wasn’t particularly interested in customising or perfecting them.

Gerbils

This is the most recent, starting just over a year ago – when I got my pet gerbils! I spend a lot of time arranging and rearranging their cage, planning and making toys, playing with them, training them, thinking about what to feed them, and just watching them. I find all animal behaviour fascinating, and gerbils especially. I like seeing them interact with each other, dig burrows, and chew cardboard – it’s fascinating to wonder what is going on in their minds. Not to mention they are absolutely adorable!

Autism!

This is probably the most obvious one, because… I’m writing it on a dedicated autism blog! It started around two years ago. At first, I just thought that I had an inexplicable fascination with it. Eventually I realised there was a reason for that: when I realised I was autistic. After that the interest just got stronger and stronger, and even moreso after my diagnosis. It might one day become dormant like many of the others, but I can’t quite imagine it.

 

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Asking for help

When I saw people talk about having trouble asking for help or accommodations, I wasn’t really sure what it meant. I assumed I was good at asking for help. I can be assertive, I can clearly and explicitly state my needs, I can follow rules and instructions to do exactly what I need to in order to get help. It all sounds pretty simple.

But I’ve recently realised it’s actually not that simple. Asking for help has a lot more steps than just “Use words to tell a person what I want them to do”.

  • Recognise that I’m having difficulty with something.
  • Recognise that the difficulty can be solved or improved by a specific thing.
  • Recognise that another person could provide that specific thing.
  • Decide which specific person can provide the thing.
  • Decide how and when to ask the specific person.
  • Actually ask the person.

It turns out I might be good at the very last one, but every step before that is difficult. I’m going to use the fictional example of being in a hot classroom to illustrate the steps.

  • Recognise that I’m having difficulty with something

This is hard because I’m never sure how to define ‘difficulty’. How hard or unpleasant does something have to be before I can consider it difficult? How much worse does it have to be for me compared to other people for me to justify asking for help?

There’s also the fact that I sometimes literally don’t notice that something is difficult or unpleasant. It was only in fairly recent years that I realised loud and busy situations are inherently stressful to me. Before that I would be inexplicably miserable and exhausted, and with no idea why or what to do about it.

In my example, this stage would be recognising that I feel too hot and it’s making me uncomfortable.

  • Recognise that the difficulty can be solved or improved by a specific thing

This part is difficult because it requires going from an overall feeling of “something is wrong”, to a specific idea about what can be changed and how. It also needs me to imagine how a certain thing would change the situation in order to work out whether it’s a suitable solution.

In my example, this stage would be to recognise that I’d feel better if the room was cooler. It also means discounting impractical or impossible things which would solve the same problem: leaving the classroom would get me out of the heat but should only be a last resort; I could change into cooler clothes but don’t have any with me; etc.

  • Recognise that another person could provide that specific thing

This means figuring out which aspects of a situation can be controlled by people and which can’t. It can be difficult because when I’m stressed it’s hard to separate out different aspects of a situation to define them.

In my example, the weather: can’t be controlled. The air conditioning: can be controlled. So another person could change the temperature of the room by turning on the air conditioning.

  • Decide which specific person can provide the thing

This needs me to work out who is the best person to ask for help. Who is the mostly likely to understand my request, who has the power to do the thing that I need, who will want to help me, etc. This is hard because I have trouble working out how people will respond and who is the best person to ask.

In my example, I might have to decide whether to ask the teacher or the teaching assistant. The teacher probably has more authority, but the teaching assistant might be more friendly or approachable, for example.

  • Decide how and when to ask the specific person

I have to figure out how to ask for what I want in a way that expresses my difficulty and also gives clear information about what would help. I have to decide the right time, place, and situation to ask someone, and exactly how to approach them and initiate the interaction. I have trouble interacting with people at the best of times, and when I’m already stressed it’s much harder to know what to do.

In the example I’d had to decide when was a good time to ask the teacher to turn on the air conditioning. I should wait until they’re not addressing the class, but I should also try to get their attention early on in the lesson so that I’m not suffering for too long. I have to know how to get their attention and ask them without overstepping my boundaries as a student or seeming like I’m demanding rather than requesting.

  • Actually ask the person

This is the bit I can usually do, once I’ve worked out everything else!

In practise

Last weekend involved a short but very busy trip – meals out, socialising, and all without any real gaps in between. I was miserable and exhausted by the end, even though it was a happy occasion.

And I failed horribly at asking for help. I just tried to put up with being overloaded, because I didn’t think I had a choice, or didn’t realise anything could be changed, or that anyone else might be able to improve the situation. So, this is my formal challenge to myself to try and get better at it. Next time I recognise that I’m having trouble, I will work on the steps after that so that I can try to improve the situation.

 

 

 

 

Why I love board games

I’m not sure if board games are a particularly autistic thing. But I know that they are a very popular pastime among my family, and one of my favourite modes of interaction. I think board games bring together several different factors which combine to make one of the best social situations for me to enjoy.

Structured

There are clear parameters for the interaction. Everyone knows that we are going to sit around the table until the game is finished and that we all have a specific purpose for being there. There’s no need to try and improvise with conversation or work out what people want to be doing, because everyone already knows what they’re doing there.

Time-limited

There is a predefined end for the interaction – when the game ends. That provides a socially-acceptable natural time to leave or take a break, without having to create an excuse if I want to get out of the situation.

Rule-bound

There are rules to the game. No-one will think I’m being overly rigid or pedantic if I enforce the rules by reminding people what to do and how to play (me and my dad are usually the designated arbiters!). Similarly, no-one will find it weird when we explicitly discuss the rules of the situation (whereas it’s totally unacceptable to ask about the rules of a typical social interaction).

Systemising

I love games generally. There’s a lot of room for planning and strategising, and I get to stretch my brain and work hard to try and win. But it’s all within defined rules which stops the choices from being overwhelming.

I don’t have much of a conclusion for this post! Just that I’m glad my family have a popular type of interaction that works well for me.

Education

I recently had a disappointingly familiar experience. I was referred to a group CBT course – not group therapy, but more of a series of small group lectures to learn some techniques and exercises.

After a few of the weekly sessions, a recognisable feeling started to creep over me. The content was interesting enough, and the course was not run particularly badly. But I absolutely knew that it was not providing anything for me. I could learn the information much more efficiently, quickly, and enjoyably, if I was at home alone and not in the lecture itself.

I suppose a lot of NT people find it helpful to learn in groups. At the CBT course, the other participants seemed to enjoy telling and listening to stories and ideas from each other. But all I could think when they were talking was “When do we get back to the point? I’m not learning from this.”

This is an experience I have had repeatedly throughout education of all kinds. Initially, I can see the appeal of interacting with people who have similar interests, and of being able to directly interact with the educators themselves. But that appeal is extremely short-lived and soon runs dry when I’m faced with the exertion required to keep it up.

I have to push myself to go out, travel to wherever it’s happening, find my way into the right room to settle in, interact with my fellow learners, interact with the educator, keep up with verbal explanations, keep still throughout the lesson, concentrate solidly with no chance of a break, then lots more interaction followed by finding my way out and back home again! And all of this in exchange for learning something which I could understand much more quickly and easily if I just read written/visual information alone and in my own time.

I can understand the appeal of a social situation involving a certain subject, but not when I’m learning the subject. For me, those two things have to happen separately in order to be efficient or enjoyable. If I’m in a situation which has both, I have to just pick one to focus on (generally the learning), and I still find it much harder because I’m distracted by the other element (i.e., the people socialising around me).

I’m starting a distance-learning degree soon. It will be an interesting experience, because it seems like it will be the perfect learning style for me. But I’m wary of getting my hopes up too much. Maybe I actually need something that’s in-between traditional classroom learning and completely solitary learning? I guess I’ll find out.

Educational accommodations

I’ve recently found myself in an interesting situation. I’m about to start a distance-learning degree, and it’s the first time I’ve entered education with a formal diagnosis behind me. Suddenly I’m being inundated with help and accommodations that I don’t know what to do with!

It’s strange. The only experience I have with education is that when I have zero accommodations, it’s clearly not enough. But I don’t actually know what kind of accommodations I do need, or how much will be enough. So I’m having to try and imagine what things might help me, when I don’t actually have any evidence for it. Most people my age who are starting a degree will have plenty of history to rely on: “In college, they gave me an extra week on all my assignments”, for example.

But I don’t have that. All I have is a history of a few desperate attempts to get me to attend my exams by offering me the chance to sit in a smaller room or take a break. None of which were particularly effective by themselves.

The other complicating factor is that distance-learning is already very different from any education I’ve had before, so I can’t directly compare it to my previous experiences. Usually the most stressful aspect of education is sitting in lessons themselves – and there won’t be any lessons this time.

I’m left doubting whether I will actually need any accommodations at all  – or whether the different experience will be enough to help me cope. Only time will tell, I suppose.

Lying

Lying is one of the few autistic stereotypes that actually fits me quite accurately. I’ve always found it very difficult to lie, and I get really angry if other people do it. When I was younger, it was even a struggle for me to understand that other people were able to lie.

I think that part of my experience of lying is partly related to the way I interpret rules. When I was a kid, I was taught by the adults around me (like most kids are) that “lying is wrong”. Most people seemed to easily understand the implicit message about the situations where lying is acceptable (e.g. “if it would hurt someone’s feelings”, “if it’s an inappropriate topic”, “if you don’t want to talk about it with that person”). But I only learnt the rule as it was taught. Lying is wrong.

So I didn’t lie. And I assumed everyone else would never lie either. Realising that other people lied was like a betrayal –they were breaking the rule without even worrying about it. But knowing that other people lied wasn’t enough for me to do it myself. I couldn’t break the rule, even if other people were doing it. Whenever I had a fight with my ‘friends’ in primary school (which happened pretty often), the teachers would ask us what happened. I would tell the truth, and the other kids would lie, and I’d be the only one to get in trouble as a result. For some reason, even my honesty was less believable than someone else’s lie. (did someone say atypical communication?!)

Nowadays, I have taught myself to lie very occasionally. I can handle lying when it’s part of social scripts (things like answering “Fine, thanks” when someone asks how I am). I can tell small and fairly unimportant lies if it means I can get out of an uncomfortable situation or conversation (like saying I’ll be busy if I want to decline an invitation to something, or saying I have somewhere to get to when I want to leave). I can sometimes manage a lie when I want to avoid telling someone about something that is private or personal (like telling my friends I feel ill and need to go home, rather than admitting that I’m panicking).

I still find it extremely difficult. When someone asks a question, I don’t interpret it as “give me the information I want, or a lie that will make me feel better” – I interpret it as “give me the information I want, or an explanation for why you can’t”. I can sometimes get away without lying, by simply admitting I don’t want to say something – for example if my friends ask why I’m upset, I just answer “I don’t want to go into it”, or similar. That lets me stay within my interpretation of the question, by giving an explanation for not answering.

My rules of communication also make it really hard for me to deal with being lied to. If I ask someone a question, I don’t want them to lie to me rather than answering. If they can’t or don’t want to answer, I want them to simply explain that. I’d much rather someone said “I don’t know you well enough to talk about this with you”, rather than outright say something completely false just to get out of the conversation.

If I find out that someone has lied to me, I feel like my trust has been completely broken. It’s very difficult for me to recognise a lie at the time. So if I know someone lied to me, I have to assume than anything they ever say could now be a lie. Which makes it pretty hard to trust anything they say after that. I’m trying to work on teaching myself that when other people lie, they do it for a reason – even if I don’t understand the reason. But it’s pretty difficult. I tend to deal with it by simply surrounding myself with people who have the same rules for lying as I do, so I don’t have to feel like I’m constantly on guard around them. It works well enough for me.

Ways of thinking

There’s often a lot of talk about the way autistic people think. Anyone who’s heard of Temple Grandin has probably heard that she describes ‘thinking in pictures’ – her thoughts flick through her mind like photographs. Other autistic people say they think in words – with no visual element at all.

I’ve thought about this a lot, because I wasn’t sure whether I was a words or pictures thinker. I eventually decided that the reason I had trouble figuring it out was because I’m not a words or pictures thinker. I know that I don’t think in pictures, because I don’t visualise photo-real images of things. Not every thought has a visual element attached. I know I don’t think in words, because I have to translate my thoughts in order to communicate using words  – which is sometimes difficult to do.

I guess the best way to describe my thoughts would just be… concepts? My thoughts take the form of maths, logic, spatial relationships, sets, diagrams, graphs, and other non-verbal things. They aren’t visual in the sense of being perfectly accurate or precise images. The visual element (when it’s there) is just a way of representing the relationships between things.

This is why my thoughts are sometimes easy and sometimes difficult to translate. Certain types of concept are a lot easier to express in words. For example, we can easily say something like “there is more of this than of that”. Others are almost impossible to translate – at least not with any language I know (perhaps if I was fluent in advanced mathematical logic I would be able to express myself better!).

When I was first talking to my dad about autism and the inaccuracy of the linear spectrum, I ended up drawing endless graphs and diagrams to try and make my point. It took weeks before I was able to find the words to really explain myself, and even now I’m not sure I’ve quite said what I wanted to.

I often resort to using diagrams to express myself. Sometimes it works well enough to communicate my point to someone. Other times, just making the diagram concrete allows me to ‘read’ it and form a verbal description. And sometimes the thoughts are so abstract that I can’t find a way to visually represent them – it would require a four-dimensional graph or a moving animation or something else I can’t do with a pen and paper.

Routines

I’ve talked about my trouble with edges. This is one of the reasons routine and familiarity is so important for me.

Sameness allows me to stop worrying about my edges. If I’m anxious and I feel like I’m losing them, I use familiar routines to keep hold of them. Familiar things work like signposts to the reality of my existence. Even when my internal self is in chaos, I can check on my consistent surroundings to keep hold of things. Routine also allows me to protect myself from unnecessary input. If I’m in a situation that I know is safe and familiar, then I don’t need to be on alert for danger or threats.

If I’m overwhelmed after a loud party, I can retreat to the safety of consistency. I can sit on my bed and turn on my laptop and use the familiarity around me to re-draw my edges after they’ve been overwritten and erased.

If I’m stressed and anxious and I feel my edges starting to disappear, I can try to protect myself by using routine to reinforce them. I deliberately avoid unfamiliar or new things so that I have the best chance of staying calm.

If I’m too tired to figure out how I feel or what I want, I can keep myself going and save decision-making energy by relying on sameness. I return to what I know – eat the foods I always like, do the things I always enjoy – and save my cognitive energy for the essentials.

If I’m anticipating something difficult or overwhelming I can plan and prepare to make things as predictable and familiar as possible. I make sure to have whatever safe and reliable anchors I can gather around myself – books, toys, people.

All of these things might look like irrational rigidity from the perspective of a neurotypical person. But they’re actually coping mechanisms. The world is scary and overwhelming a lot of the time, in ways that people don’t always understand. The best way for me to handle that is to impose order wherever I can.

Functioning labels and non-linear spectra

In the last few weeks, I’ve talked to a lot of people about autism. Most of my family have heard about my diagnosis and everyone seems very interested. I’ve been doing a lot of explaining things to an ignorant but open-minded audience: the ideal students!

The one most common piece of misinformation I’ve encountered is the idea of a linear autistic spectrum. Things like “You’re obviously high-functioning”, or “I guess you’re fairly mild”. These are understandable things to say for people who know very little about autism. I can speak, I can do things independently, I’ve (more or less) managed to get through school, and I obviously wasn’t diagnosed as a kid. If autism was a linear spectrum, I would be placed at the ‘mild’ end. But… it’s simply not.

The main source of the problem is the fact that most people are not autistic. And so, most people who study or think about or talk about autism are not autistic. That means that most information about autism comes from the perspective of non-autistic people. That’s why lists of traits contain things like “inappropriate eye contact”. If you asked most autistic people, they’d say it’s neurotypical people’s eye contact that’s inappropriately intense and demanding!

The point of that example is just to show that autism from the inside is very different to what neurotypical people see from the outside. And that is still very true when it comes to the idea of a linear spectrum. Neurotypical people look at all autistic people and try to find ways to divide up and make sense of autism. But their interpretations are based on how autism looks from the outside.

It looks like there are some people who can speak most of the time, and some people who can almost never speak. Surely that factor is the most significant and relevant one – for a neurotypical person the ability to speak is incredibly important. But for autistic people, it’s not that simple. Speech is not the only way to communicate, and it’s often not the best way. I can speak well most of the time, but I can generally express myself far better in writing – and I know a lot of other autistic people feel the same way.

So am I really all that different from someone who can’t speak, if we both communicate better in writing anyway? Trying to put a major distinction between us does nothing for anyone involved.

The only real reason to try and divide up the autistic spectrum is to be able to support and understand everyone individually – which is perfectly reasonable. But dividing us up with a straight line from “speaks a lot” to “doesn’t speak much” is focusing way too much on something insignificant, and ignoring many other important factors.

What about the fact that I have no innate sense of direction? Or that I can’t eat foods with mixed textures? Or that I panic if I stray too far from home? Or that I can’t tell when I’m being bullied and manipulated? Or that I can’t sit still and pay attention at the same time? Or that I am unable to study in a class full of other people?

Why are all of those things considered so much less significant than the fact that I can usually use vocal words to communicate with other people pretty well? The answer is probably just the fact that vocal words are a bit more noticeable to outside observers. But just because something is more noticeable from the outside, it doesn’t mean it’s more significant on the inside.

Pedantic

I am frequently called pedantic. It’s usually in the form of a minor insult or an attempt to make me shut up about something. I get it when I’m trying to pin down the real meaning of what someone’s saying, and they think I’m being deliberately difficult. I get it when I correct someone when they make a small mistake. I get it when I take too long trying to explain my own exact point.

Recently, a discussion ensued about the actual meaning of ‘pedantic’. According to Google, it means:

excessively concerned with minor details or rules; overscrupulous

So… why is that such a bad thing? I’m straining to try and understand why it is completely unacceptable to be ‘overscrupulous’, when scrupulous just means “diligent, thorough, and extremely attentive to details“. Those sound like excellent qualities to me!

I guess the point is that most people easily identify the situations in which precision is and is not vital. But for me, there aren’t any situations where precision isn’t vital – correctness and accuracy are always the most important thing. Things should be accurate at the expense of being brief, or simple, or holding someone’s attention. If something is worth communicating, then it’s worth communicating in full and to the best of my understanding. I don’t see the point of anything in between.

So, go ahead – call me pedantic. I’ll take it as a compliment, and it won’t stop me getting my point across if I have something I want to say!