Category Archives: Adult Diagnosis

Chronoception

Chronoception

chronoception: the sense and perception of time.

Time perception is one of those things that’s so taken for granted, it’s really difficult to actually explain or talk about. Time doesn’t seem like something we perceive or interpret, it’s just seems like something that is. But of course it is something we interpret, because we interpret everything, because that’s what it means to be a brain living inside a meatbag.

Chronoception is also strange because no-one can really agree on whether it’s a neurological sense – along the lines of sensing temperature and balance – or something more psychological.

Time problems

I’ve always known I had a weird ‘Thing’ about time. The first example I usually think of is that I always find it really stressful and anxiety-inducing to know that I have a fixed period of time ahead of me, like “I’ll be in school for six hours from 9 until 3”. I’ve never been able to properly express why it’s so stressful. It’s not simply that I didn’t want to be in school, or that I didn’t want to be there for so many hours – it’s something inherent about a fixed time period, regardless of what or how long.

I’m similarly stressed by things like, knowing that I need to leave the house at a certain time to catch a bus. When that’s the case, I veer between being over-prepared and ready unnecessarily early, and ignoring the time limit (as a way of avoiding the anxiety) and ending up rushed or surprised. Often I go between those extremes more than once in a single period of preparation.

I’m not very good at keeping track of dates in the future. I’ve always had a tendency to anticipate things a really long way in advance. But I also quite often find myself surprised when a certain date arrives even though I knew about it.

Just recently I’ve come to the conclusion that all of these ‘weird time things’ I  have actually do all relate to each other, even though they seem very different at first glance. They relate to each other because they all arise from the fact that I have very poor chronoception. I’m bad at sensing time.

Outsourcing

It sounds weird to say, because like I said above – time doesn’t feel like something that you sense. Time just happens, and I know that. There’s a certain number of minutes in an hour, hours in a day, days in a year, and so on. I know all of that, rationally. But I know it in the same way that I know the earth is rotating. I know it, but I don’t feel it. And so, in the same way as a scientist keeping track of the earth’s rotation through calculations and measurement, I have to outsource my sense of time in order to understand it.

That outsourcing is mostly in the form of checking clocks and calendars a lot. I carefully plan times and dates and always try to get an objective estimate of how long something will take or last. Because of all that, I probably seem like I’m good at time perception. But it’s all just overcompensation, like someone who acts arrogant because they lack self-confidence.

In fact most of the time now, I try to arrange my life so that there’s little need for that compensation at all. These days most of my time is pretty unstructured. I avoid commitments that have a set time or deadline, because commitments like that require me to put a lot of effort into keeping track of the time manually and trying to understand it. If I don’t bother with that, then sure I do lose track of time sometimes and forget to go to bed or don’t notice that I haven’t moved in hours – but at least I’m not under constant stress .

Explanations

My lack of chronoception neatly explains all of my weird time problems. I’m stressed by things like fixed time periods and deadlines because I know they’re important and meaningful, but I don’t have an instinctive sense of what they mean. So I have to put lots of effort into consciously trying to understand and keep track of something that’s inherently totally abstract and confusing to me.

I unpredictably veer between being under- and over-prepared because I don’t have any natural ability to judge the ‘correct’ rate to do things. Where someone else might easily be able to think “I have half an hour to get ready, so I know what things I have time for and how quickly I need to try to do them”, I just have to guess and hope for the best, and constantly check how I’m doing to try and adapt as I go.

I can’t keep track of dates in the future because everything in the future is just in one big amorphous ‘some time other than now’ category in my brain. An appointment next week, and my birthday next year, both pretty much live in that category together. So although I can intellectually know which will come first by thinking about dates and years and numbers, it always feels like something of a surprise when any given date actually arrives.

This also explains why I intermittently come across as either very patient or very impatient. If I want something to happen, then I want it to happen now, because now is the only thing that really means anything to me. But if something isn’t happening now, then I usually don’t care much when it is happening – because next week and next month and next year all feel more or less the same.

My systems of overcompensation paradoxically mean I’m generally really good at meeting deadlines. I talked to my brother who does seem to have a decent sense of chronoception about how he handles deadlines and he said “I just work at a fairly steady rate until the deadline”. Because somehow he has the ability to know what rate he needs to work at in order to correctly meet the deadline?! I don’t have that, but I do still have a strong feeling that deadlines are important and missing them is bad.

So my solution is to pretty much always do things as soon as possible and as quickly as I reasonably can. I work on a university assignment at the same rate, whether the deadline is tomorrow or next month. I never have to try to make decisions about how quickly to work or when to do something, because I just have one setting – ‘now’. As with many things, that system has its pros and cons. The upside is that I pretty much never miss deadlines. The downside is that I sometimes cause myself stress even over things which don’t have deadlines (or which have very distance ones), because I still have the feeling of ‘must do it now’, even if I actually don’t need to do it for months.

Realisation

Chronoception is now another in my very long list of things that made me go “…you mean everyone isn’t like that?”. There’s been some little pieces of research into the link between autism and time perception, but it doesn’t appear to be something many people are interested in. Anecdotally I know quite a few autistic people who have similar chronoception problems to me. It feels like an autistic thing, because it’s to do with processing and instincts and all those subtle things that are different for us.

It’s also on my long list of things that I don’t (yet) have any solutions for. But it’s always interesting to have a new word and a new concept to apply to my experiences.

Burnout

I crashed out of secondary school twice during the course of my five years there. I dropped out of college by the end of my second year. I bailed on my first ever ‘proper’ job at a fast food restaurant after less than two months and about ten shifts, half of which I didn’t go to. I had to give up on my volunteering position in a cafe after a few months and several missed days.

For a long time I was able to recognise this pattern, but I couldn’t understand it. I was never able to explain it to other people, because it just sounded like I was being irrationally negative: “I just have mental breakdowns every few years, so it’s bound to happen again soon.” People would just try to reassure me that I was exaggerating or making assumptions. But… I usually turned out to be right.

Eventually I came across the phrase “autistic burnout”. It’s an experience that lots of people have described, where a period of long-term gradual overload becomes intolerable. That sounds understandable enough: non-autistic people experience burnout sometimes too, maybe when they have major life events happening. But my burnout hasn’t been at times of particularly major life events – nothing more major than others around my age were going through. The explanation for that is deceptively simple, but difficult to fully explain: I have a much lower than average threshold for stimulation.

Stimulation

I’m not just talking about sensory stimulation here – that’s a part of it, but only a small part. I’m talking about the really general meaning of stimulation. For me, that includes things like:

  • Spending time around people (moreso if they are strangers).
  • Being told what to do.
  • Doing time-dependent and time-limited tasks.
  • Travelling away from home.
  • Anything which involves commitment to a task or a time or anything else.
  • Dealing with a rigid social hierarchy of any kind.
  • Sensory input – a lot (e.g. crowded places), bad (e.g. smells), or both.

There are other things, too – I only wrote down the main ones. Some of them are so subtle that it’s difficult to even define them. It’s probably easier to define what stimulation isn’t. It isn’t “me being at home by myself doing whatever I want”. Anything which deviates from that will be stimulation of some kind or another.

Threshold

I think the concept of stimulation applies to everyone – autistic and otherwise. Everyone is probably familiar with the feeling of needing a break, or being desperate for a holiday, or just wanting everything to STOP. Everyone has a certain amount of energy (or spoons, if you prefer) per day, per week, per hour – and it costs that energy to deal with stimulation.

The difference is that not everyone has the same amount of energy. The average able-bodied NT person has plenty of energy to spare, so that they rarely ‘run out’. Most of the time they are perfectly able to have a full-time job, socialise, look after themself and their home, and pursue their interests and hobbies. The idea of a limited energy level that doesn’t simply result in sleepiness after a long day is difficult to understand if you’ve never experienced it.

But some people – autistic people for example, or people with chronic illness, or mental health problems, or many other things – have a much smaller amount of energy to spend. That means they run their energy down to zero much more quickly when doing the same things. People with reduced energy thresholds can still exert themselves once they’ve run out – just like spending money with an overdraft. But overloading that energy debt can have extreme negative consequences (just like how you pay back more in interest than the amount you actually borrowed).

Depending on the reason for a person’s reduced energy threshold, the result of an energy debt may vary. For a person with chronic pain, getting into energy debt might result in a flare-up. For me, the energy limit is not so much physical as neurological. So the result of me getting into debt is a mental inability to cope: which results in severe anxiety, panic attacks, and depression.

Burnout – meltdown

My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.

Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.

Aftermath

After I’ve hit burnout, there is an unavoidable period of rest as I pay back that energy debt (which could take weeks or years, depending on how large the debt is). And then, if I haven’t learned my lesson, I go back to the overloading things and start racking the debt back up again.

So, I think I will try to learn my lesson. The trouble is, that’s not easy. I’ve spent my life so far having full-time occupations and catastrophically failing to cope with them. I don’t actually know what it’s like to have a level of stimulation that I can cope with. I don’t know what level of stimulation that will be, and I don’t know how to find out without testing myself until I crash again.

For now, my plan is to increase my level of stimulation very slowly. It’s been two years since I dropped out of college after my latest period of burnout. I spent the first year with no real occupation, which was needed in order to repay the massive debt I’d accumulated over the years previously. For the last year I’ve been studying at home full-time, which entails only minimally more than zero stimulation.

This next year I’m planning to carry on studying full-time, and incrementally add more things into my life. I’m about to become an assistant presenter for courses about autism, which will probably only happen a few times a year but is very high-concentration in terms of stimulation (talking to groups of strangers – eek!). I’m tentatively starting to work on a book and looking into publishers. I’m hoping to take more direct action on my mental health. I want to try to see my distantly-located friends and brother more frequently.

Those are mostly good things, but they’re also very hard. I am extremely wary about pushing myself too much. Burnout is not fun.

Disabled

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

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.

 

Anger

When I was little, I was told that I had an ‘anger problem’. It was quite an understandable thing for people to think. I frequently got into aggressive screaming meltdowns for seemingly minor reasons.

Of course, the causes didn’t seem minor to me at the time. Even when I look back now, I feel myself getting angry about the situation as it happened. Mostly,I got angry when things weren’t fair. That covered a lot of possibilities:

  • My ‘friends’ (and they are a story for another day) decided they didn’t want to play with me for no apparent reason.
  • I had to do chores that my brother didn’t have to do.
  • I didn’t get a say in a decision about something.
  • I was punished  for breaking a rule which served no purpose.
  • I was told to do something without explanation.

As you can probably imagine, those are all things that happen quite a lot in the life of a small child. So, I got angry a lot. In the worst periods of junior  school, teachers put me on a system where I got a reward if I managed to go a whole week without hitting anyone.

But being punished just made things worse – because I believed my behaviour was justified and so I was being treated unfairly. If my friends picked on me and I hit them in retaliation, I would get in trouble and they wouldn’t. So what was I supposed to do the next time it happened? I already knew that teachers wouldn’t punish them for picking on me, so I had to take justice into ‘my own hands’ (literally).

The problem with the way teachers treated me is that they didn’t look for an underlying cause. They didn’t even consider that there might be one. To them, I was just a mindless little kid who was acting out for no reason at all, and the only way to solve the problem was basic classical conditioning and punishment. But that wasn’t the case at all. In my small but extremely rational mind, my behaviour made absolute sense. Punishing me for it wasn’t going to change the fact that I had perfectly logical explanations for what I did – in fact, punishing me just contributed to my own reasoning.

I don’t remember if teachers ever really asked me why I’d hit someone. Probably even if they did, I wouldn’t have been able to express my logic in a way they could understand. But that’s not the point. Just because it’s difficult to understand a person’s communication, doesn’t meant you should assume they aren’t communicating anything. Can you see where I’m going with this, yet?

Yeah, it’s about autism. Autistic people – especially children – are assumed to be unable to communicate. Or worse, assumed that they don’t have anything to communicate in the first place.

I wasn’t a very ‘obvious’ autistic kid (otherwise I probably would have been diagnosed earlier!). But when I look back, it’s clear that a big chunk of the problem surrounding my behaviour and treatment at school was autism-related. My thought processes were different: that’s why I was bothered by things that seemed inexplicable or minor to other people. My emotions were different: that’s why I didn’t really have ‘degrees’ of anger which I could use to cool down. And most significantly, my communication was different: which is why teachers thought I was lying when I was telling the truth, and thought I wasn’t communicating anything even though I was trying my hardest.

When I look back, it would have been pretty simple for people to help me if they knew what to do. This isn’t necessarily advice for helping angry autistic kids (although if it helps, then all the better) – but it’s my thoughts about what would have helped this particular angry autistic kid.

  • Ask me why I’m angry. Give me time to answer. Encourage me to think about it carefully and write it down in my own time. Believe the answers I give, even if you don’t think they make sense. Take them seriously, even if you think they’re silly or minor.
  • Work with me to figure out why these things bother me. Can I find ways to understand them which will make me less angry? Can the situations be changed overall? Can they be prevented entirely?
  • Explain the situation clearly. Explain if and why I’m being punished, and exactly how I can avoid being punished in future similar situations. Explain other people’s reasoning behind the things which are making me angry, even if you think it’s obvious.
  • Tell me specifically what I should do when something bothers me. Tell me exactly why it’s a better option than my previous response of getting angry – for example, the problem will be solved more quickly and easily if I tell a teacher than if I try to deal with it myself. Then follow through on those promises, every time, no matter how seemingly small the things that’s bothering me.
  • Give me a break. Being angry really takes it out of you. Don’t push me to join in with activities again quickly. Accept that I’m going to be tired and upset for a long while.

The funny thing is, I don’t get angry much these days. But it’s not because I learnt amazing anger management techniques from my teachers (hint: that didn’t happen). It’s because unfair things don’t happen to me much anymore. Because most of the time, people explain things to me, and assume that I can understand them, and believe me when I tell them things, and trust my reasoning. Those abilities haven’t changed much in the last ten years for me. Kids are clever and thoughtful and self-aware long before most people think. And I reckon that acknowledging that would solve a whole lot of problems in one go.

Alternative autism criteria

I’ve written a much-improved updated version of this. Click here to see it!

Since my diagnosis I’ve been irritated with all the information about autism using the ‘triad of impairments’. If you haven’t heard of it (where have you been?!), the triad is “social communication”, “social interaction”, and “[social] imagination”.

There are so many reasons why the triad of impairments is flawed. It doesn’t reflect any actual diagnostic criteria, so there’s no need for it. The distinctions between the three sections are vague and poorly-defined, so that pretty much any trait could fit into any one of them. Then there’s the fact that it actually misses out many of the most significant traits, because it only focuses on external social elements (because… *sigh*, it was written by NT people who just described the traits most apparent to them).

So, I decided to write my own. This isn’t a set of diagnostic criteria – I’m not a professional and I don’t know how to diagnose autism. It’s simply an overview of common traits with examples, divided into (what I think are) logical categories. If I could have my way, every leaflet about “what is autism” would contain this – rather than the useless and nonsensical triad of impairments.

Social

  • Differences in body language and nonverbal communication. E.g.:
    • Reduced eye contact.
    • Reduced variation in vocal tone.
    • Unusually loud or quiet speech.
    • Different or reduced use of gestures.
    • Reduced use of facial expressions.
  • Differences in verbal communication. E.g.:
    • Preference for speaking in ‘paragraphs’ over back-and-forth interaction.
    • Difficulty using words in some situations, such as under stress.
    • Use of echolalia and/or scripts in communication.
    • Preference for text-based communication.
  • Differences in interaction and social relationships. E.g.:
    • Reduced desire for social relationships.
    • Preference for one-to-one or small group interactions.
    • Preference for functional and pragmatic interactions over social ‘chit-chat’.
    • Difficulty forming or maintaining social relationships.

Sensory

  • Hypersensitivity to one or more senses or specific sensations. (e.g. bright light, specific textures, strong smells). Demonstrated by pain, illness, discomfort, or avoidance of certain sensations.
  • Hyposensitivity to one or more senses or specific sensations. (e.g. pain, temperature, taste). Demonstrated by failure to notice, react to, or distinguish certain sensations.
  • Sensory seeking. Demonstrated by stimming (self-stimulation) behaviour in one or more ways. E.g:
    • Fascination and staring at lights or moving objects.
    • Pressure from weighted objects or body weight.
    • Vestibular sensations such as swinging, rocking, and spinning.
    • Moving limbs and/or objects such as hand flapping, fiddling with toys, hair twirling.
    • Desire for specific smells or tastes.

Rigidity

  • Intense and/or specific interests. E.g.:
    • Spending the majority of time focused on few interests
    • Interest in a very narrow, unusual or specific subject area.
    • Desire to learn all facts and information about interests.
    • In-depth and expert knowledge of interest area.
    • Interest primarily enjoyed alone, without consideration of social implications.
  • Preference for routine and sameness. E.g.:
    • Specific routines for days, weeks, or certain activities.
    • Distress and disorientation when routines are disrupted.
    • Preference for doing things the same way as always.
    • Preference for planning things carefully in advance.
    • Anxiety in new or unfamiliar situations.

Cognition

  • Difficulty with executive function. E.g.:
    • Poor short-term/working memory.
    • Difficulty planning and executing a series of actions.
    • Difficulty identifying and solving problems.
    • Difficulty concentrating on relevant information.
    • Difficulty starting, stopping, or changing activities.
  • Differences in understanding or processing emotions. E.g.:
    • Mistaking physical sensations for emotions, or vice-versa.
    • Difficulty identifying or naming own emotions.
    • Difficulty recognising or understanding other’s emotions.
    • Preference for using logic over emotions in decision-making.
    • Do not externally express emotions.
  • Detail-focused thinking style. E.g.:
    • Tendency to notice specific details before, or instead of, overall ‘big picture’.
    • Difficulty generalising from specific examples.
    • Difficulty noticing implied messages.
    • Skilled in identifying minor errors such as typos.
  • Love of patterns and systems. E.g.:
    • Talent for systematising subjects such as music, mathematics, science, puzzles, languages.
    • Enjoyment from organising and arranging information or objects.
    • Skilled in recognising patterns.
    • Preference for learning from systems before examples.

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.

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.

Observations

I’ve been reading and re-reading the report from my assessment. It’s strangely exciting to know that a near-stranger took the time to write a nine-page report all about me! It’s also really interesting to see the way a professional describes me in terms of autism. I think the most interesting thing to me was the way she described my social communication. I was under the impression than I did a pretty decent job of passing for NT most of the time, but it seems I was wrong!

I was particularly surprised that she included “makes eye contact much less than might usually be expected”. I knew that my eye contact was a bit questionable, especially with new people. But I thought that I made about as much eye contact as most people, just that I found it a bit more uncomfortable and effortful. During the assessment I was very conscious of eye contact, and kept getting distracted wondering if I was making too much or too little, near the beginning. As the assessment went on I think I just gave up on trying and ended up making very little.

I also found it interesting that she described “limited non-verbal communication (facial expression, gesture)” and “little variation in tone or pitch when talking”. Again, I thought I probably passed as fairly NT, but I guess not! In the assessment I had my hands on my lap under the table, because I was nervous and trying not to pick my fingers (I do it less when I can’t see my hands), so I think I think that probably contributed to the lack of gesture.

I was less surprised by the ones about social interaction:

rarely or never asks conversation partner about their thoughts/feelings/experiences”
I guess this was about the bit where she mentioned quilting and I completely ignored it!

although happy to engage in a conversation, social overtures were restricted predominantly to personal demands or related to interests/topics”
My first thought when reading this was “what else are you supposed to have conversation about?” – which I think means that it’s definitely accurate!

At the end of the report, she gave a list of lots of resources to look into. She recommended a few ASD social groups – which is exciting but also very scary!

There is a lot to think about now, but it’s pretty much all good things. So although it’s quite overwhelming, it’s a good kind of overwhelming. That’s a pretty novel experience.

 

Answers

It’s been a long two years since I began to realise there really might be one thing to explain it all.

It’s been a long year since the most intense period of anxiety and burnout of my life.

It’s been a long five months since I first took the leap and asked for a formal assessment.

It’s been a long few weeks since I poured out my evidence and counterevidence to a stranger, and went home to realise just how much evidence I provided.

And now I finally know for sure.

…fulfils the diagnostic criteria for an Autism Spectrum Disorder.

It’s really true. It’s really me. All of my fears and suspicions and theories were correct. All this time I doubted myself, or thought I would have been diagnosed younger, or that I didn’t have enough problems to fit, or that surely someone would have noticed.

But I was right. I have my answers at last.

Formal assessment

Well, my assessment was yesterday. I still have to wait a couple of weeks for the results appointment. But at the end of the session, the assessor person told me she thought I’d very likely get a diagnosis.

Since the assessment I’ve been doing lots of research about the diagnostic tool that was used, the ADOS (Autism Diagnostic Observation Schedule). It’s been very interesting to find out what the ‘expected’ responses were and how I compared.

Note: If you are expecting a formal assessment soon that might use the ADOS, I would recommend you don’t read the rest of this post. The assessment will be more accurate if you don’t know much about what to expect.

There were several activities involving objects and tasks. I assumed that they were the end in themselves, but of course it turns out they were just opportunities for the assessor to look for certain social behaviours. How very autistic of me to be so focused on the task at hand that I forget what the actual purpose was!

The first task was a simple puzzle. There was a laminated sheet with the outline of the completed shape, and then a set of foam pieces which were all the same shape, to be fitted together. When the assessor gave it to me, she gave me only a few of the pieces and said “Let me know if you need any more bits and bobs”. I thought it was weird that she didn’t just give me all of them straight away, but I didn’t even consider the fact that it might have been deliberate (my mum pointed it out afterwards!).

The task was actually supposed to see how I asked for the extra pieces. I was quite focused on the aim, so I don’t fully remember how I asked. I’m pretty sure I didn’t make eye contact, I think I just said something short like “Can I have some more pieces?” I remember that when I asked for more, she didn’t give me all of them – so I had to ask a second time to get the last ones. At that point, she said something like “It might need all of the pieces”, and I think I just said “Yeah” because – it obviously needs all the pieces!

Another task was to tell the assessor how to brush her teeth, imagining that she had “forgotten how to do everything”. When I looked this up, apparently the instructions are to “show and tell” – and the task is supposed to test how well you use gesture in combination with words. I can’t remember whether the assessor actually used that phrase, but if she did I must have ignored it. I told her using almost exclusively words. The only gestures I used were when I moved my hands in order to remind myself which parts I was talking about – and to check which hand was left and right so that I said the correct one.

Then I had to make up a story using some objects. The assessor got out a box full of things, and then chose five and told her own story with them. Then she told me to choose five of my own and tell a story. I chose a Rubik’s cube, a small red wooden cube, a black feather, a block of white foam, and a purple spiky ball. I had trouble thinking of any ideas for the story. The first thing I said was “This is a baby cube and this is the parent cube” to describe the Rubik’s cube and the red block. It seemed logical because they were the same shape but different sizes.

Then I said “They’re playing catch with the ball” and showed the purple ball moving between them. Then I couldn’t think of what to do next but eventually I said “this is a baby block as well, but it’s older” about the foam block – because it was a sort of in-between size (but not actually a cube). Finally I added the feather and said “This is like a bat, and the baby uses it to hit the ball”. Then I said that was the end. It wasn’t much of a story. When I looked it up, I found that it was testing your ability to assign personalities to objects (which I guess I… sort of did?), and your ability to make a story with a beginning, middle, and end (which I… definitely did not).

The next task was to tell the story from a picture book with no words. The assessor told the first few pages, then gave it to me to carry on. I noticed that she seemed to talk more about intentions and emotions, “The frogs want to go that way,” “The frogs are having fun”. When I carried on, I just described what was happening in each individual picture, “They’re going over some houses,” “They hit a washing line,”. (Yes, the story was about flying frogs). I didn’t really make any connections between the pictures or create an overall story from it.

The last activity was to describe a picture. I was given a laminated sheet that had a photograph of a piece of embroidered fabric showing a scene. I described what I could see in the scene – “There are lots of people around a table and it has food on it.” Then I tried guessing what the scene might be “It looks like it could be a party. Maybe a birthday because there’s a cake, although there aren’t any candles on it.” The assessor asked me where I thought the picture was set, and I said I couldn’t tell because all the people looked different. Then she said something like “It looks like it’s made of fabric. I’ve always wanted to get into quilting like that”.

I thought that was a kind of weird thing to say – why would she start talking about herself in the middle of an assessment about me? So I just ignored it and kept looking at the picture to try and think of more description to add. When I looked up the ADOS, I found that the assessor talking about herself was supposed to be a ‘cue’ to get me to chat. Apparently I was expected to ask her more about it or say something in response.

The rest of the assessment was mostly an interview, with questions about things like emotions and relationships. She asked what things made me happy/sad/angry, which I found really hard to answer. I said I thought being happy was something that seemed to happen more randomly, rather than as a result of specific events. And she asked me to describe how certain emotions felt, which I also found really difficult.

We also talked a lot about childhood, things like difficult making friends and having restricted interests. My mum said that there have been times where I get obsessed with something and don’t want to talk about anything else – she listed lots of examples, past and present. I found that interesting, because I thought that I was pretty good at ‘hiding’ my obsessions. I mostly just want to think about them alone anyway, so I thought I didn’t usually get into talking about them that much – but apparently I do!

It was a very interesting experience, and it wasn’t as stressful as I thought it might be. At the end, the assessor told me she has to get all the information together and consult with a colleague before she can agree on a diagnosis. I gave her a printed list of traits which I had annotated, and she said that would be very helpful. Now I just have to wait until the 11th for the results appointment.