All posts by autisticality

About autisticality

Writer, knitter, 20-year-old autistic nonbinary human.

Blaming trans identities on autism hurts everyone

Originally written for the Huffington Post Blog.

There has recently been a lot of media attention on the connection between being transgender and being autistic. The focus of much of this attention is Dr Kenneth Zucker, a psychologist whose gender clinic was closed down in 2015 for practising reparative therapy on children – behavioural therapy with the aim of ‘training’ children not to be transgender. He has been outspoken about his views that children with gender dysphoria are often autistic, and the implication that this somehow means they are not truly transgender.

Blaming trans identities on autism like this is directly harmful in many ways. Not just to autistic transgender people, but to other autistic people, other trans people, and to those who are neither.

It hurts autistic people

To blame trans identities on autism is to say that autistic people cannot understand or be aware of their own gender. If an autistic person cannot know they are trans, how can they know they aren’t? How can they know anything about themselves?

When a person’s gender is doubted because they are autistic, this paves the way for removing autistic people’s agency in all kinds of other ways. If we can’t know this central aspect of our identity, we surely can’t know how we feel, what we like, or who we are. In short, it implies that we are not truly people, and that our existence, experiences, and identities are for other people to define. This is just another facet of dehumanising autistic people, and gender is certainly not the only area in which this happens.

It hurts transgender people

In itself, the very urge to find a ‘reason’ that someone is transgender is a result of believing that being transgender is a problem, and that it would always be better not to be. The fact that clinicians like Zucker are focused on why someone is transgender, instead of focusing on what kind of help they need and how to best provide it, demonstrates clearly the belief that it is fundamentally bad to be transgender.

Not only that, but the belief that it’s even theoretically possible for anyone besides the individual in question to know what someone’s gender is. That’s just not how gender works! No-one really understand what gender is, or what it means, or where it comes from. The only thing we know for sure is that it’s internal, subjective, and personal. You can’t prove or test someone else’s gender any more than you can prove or test their favourite colour. The idea that it can be tested is constantly used to invalidate trans people. Our genders are doubted or disbelieved if we fail to adequately ‘prove’ ourselves to everyone else – if we express too many or too few gender stereotypes, if we are too old or too young, if we claim to be nonbinary or our description of our identity is too complicated or confusing.

It hurts autistic transgender people

When Zucker and others like him talk about autistic trans people, it is entirely with the implication that a person cannot be both. If a child goes to a gender clinic for dysphoria and is found to be autistic, the assumption is that they therefore must not be transgender. Their entire experience of gender is blamed on autism and brushed off as an arbitrary ‘fixation’.

Perhaps less common but equally damaging is when problems related to autism are blamed on the fact someone is transgender, rather than vice versa. If a transgender person seeks support or assessment for autism, any autistic trait they point out may be brushed off as a result of being transgender. The assumption people make in these cases is again that it’s impossible for someone who is transgender to also be autistic.

But autistic transgender people do exist. I am right here, existing – so are many of my friends. And if anecdotal evidence isn’t good enough, there is increasing research showing a correlation between being transgender and autistic among children and adults.

We don’t just exist, we exist disproportionately. And we’re not going anywhere. Autistic transgender people’s needs are unique, perhaps complex, perhaps poorly-understood. But the solution to the ‘problem’ of autistic transgender people is not to deny our existence, it’s to accept and learn about it.

It hurts everyone else

Much of the concern over autistic and transgender people – particularly children – seems to be rooted in worries for people who are not those things, but falsely believe that they are. If a child becomes mistakenly convinced that they are transgender, that they will be forced into life-altering hormones and surgeries. Or if a non-autistic person believes they are autistic, that they will be permanently labelled and coddled with no hope of change.

But those things are only a risk if the people around them are enforcing strict binaries and preventing harmless self-exploration. If a child mentions not feeling like their birth-assigned gender, and the next day they are put under the knife for permanent and risky surgery – yes, of course that would be bad. If a child mentions not feeling like their birth-assigned gender, and the next day they are forced into behavioural modification therapy to stop them from expressing those feelings – that is bad too.

Those two approaches are not the only options, though. The best option is to allow someone to explore their feelings, support them in gaining self-understanding, and accept their identity whatever it turns out to be. It is not complicated, and it’s only scary if you are still holding onto the belief that being either autistic or transgender – or, perish the thought, both – is a terrible thing to be. Which it’s not. I am, along with countless others like me, living proof of that.

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.

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.

 

How to make your event autism-friendly, part 2: sensory needs

Posts in this series:
Part 1: Introduction
[Part 2: Sensory needs]

Sensory needs tend to be fairly hit-and-miss in how well they are accommodated. People with little or no understanding of autism sometimes have no idea that sensory differences are even relevant. People with slightly more understanding often have good intentions but make changes based on misinformation or simplifications. The fact is, just like in all areas, there is a huge range of variation in sensory needs among autistic people. There’s no simple approach to accommodating us.

Autistic people’s brains are wired differently in ways that mean we experience sensory input differently to non-autistic people. That covers anything from synaesthesia, over- or under-sensitivity, specific sensory ‘intolerances’, perceptual distortions, strong preferences or aversions to using particular senses, and more.

The easiest of these differences to understand (as well as one of the most common) is about comfort with levels of input. Everyone – autistic and otherwise – has a comfortable range of input for each sense. For example, you have a comfortable range of temperature – if you’re much hotter or colder than your comfortable range, then you’ll be unhappy. Similarly, you have a comfortable range of volume – if it’s too loud you might get a headache or feel stressed, if it’s too quiet you might be unsettled or anxious.

Most NT people have a pretty similar range of comfortable input. The point at which a sensation is “too much” or “too little” is mostly the same from one NT person to another. And there’s generally a pretty good correlation from one sense to another, too.

NT input levels

In comparison, autistic people tend to have much more varying levels of comfortable input. That means their comfortable range might be a) much narrower or wider than the NT average, and/or b) offset higher or lower than the NT average. Not only that, but the comfortable range in one sense may be offset  or expanded in one way, and the range in a different sense might be offset completely differently. All in all, autistic sensory experiences are a classic example of how we tend to occupy the extremes of any bell curve you care to mention.

Autistic input levels

But different comfortable ranges are not the only thing that can be different about autistic people’s sensory experience. There are also all kinds of even more specific and individual differences. It’s pretty common to have what I think of as sensory ‘intolerances’ – specific types of sensation which are unbearable, regardless of the intensity of input. For example, a person might react very strongly towards one or more particular textures, tastes, smells, sounds, etc. There’s also the opposite – particular types of input which a person craves or enjoys a great deal. And just as before, you’ve guessed it, there’s no pattern or predictability to these. One person’s intolerance might be another person’s favourite sensation.

Another fairly common experience is to have trouble with processing certain types of sensation. That may apply to just one sense – many people have auditory processing issues that make it hard to understand speech or to distinguish between different sounds. Or it might be with all sensory input – having too much input in any combination of senses can be overloading and make it difficult to process or interpret anything else.

Putting it into practise

Hopefully you now have a general understand of how autistic people’s sensory experiences differ from neurotypical people’s, as well as how much variation there is across individuals. Now it’s time for some advice on how to apply that understanding to making your event accessible for autistic people. I’m going to divide this into some general principles about how to approach things, along with specific examples and advice.

Less is more

We’ve already gathered the fact that autistic people aren’t all over-sensitive or all under-sensitive. But in spite of this, it is important to reduce input as much as possible. In general, it’s worse to have too much input than not enough. If you don’t have enough input, you might be bored, restless, or uncomfortable. It’s not nice, but it’s generally possible to handle it. You can find your way to a situation with more input as quickly as possible, or provide input for yourself (who hasn’t tapped their fingers while bored in a waiting room?).

In contrast, having too much input can be actively dangerous. When a person is overloaded, they may partially or completely lose the ability to process further input. That means they could be disoriented, may become unable to understand speech or other communication, and be incapable of finding their way safely to a more comfortable environment. They might also struggle with internal processes, meaning they could have trouble making decisions, understanding and remembering what’s happening, or expressing communication. That includes being able to recognise and express the fact that they are overloaded and need help. This can be terrifying and dangerous. In comparison, the risk of feeling bored or restless is greatly preferable.

So, the safest way to deal with this is to make it easy for people to avoid input as much as possible. Any area or activity which is necessary or unavoidable, should have its input as low as it feasibly can. That means:

  • Whatever public or central areas the events are taking place in.
  • Any corridors or routes between those places that people will need to take
  • Any facilities people may need to use (toilets, cafés, etc).

Any location that someone attending the event might want or need to be in, in order to fully experience the event.

What is unnecessary input?

  • Sounds like radio, music, or audio announcements.
  • Noisy tools, machines, or activities.
  • Crowds or people talking.
  • Videos, moving or flashing lights.
  • Attention-grabbing images, objects, and displays.

At the event I went to that prompted this series of posts, the corridors of the venue were full of ‘things’. There were stalls and displays with people offering leaflets or selling things, as well as benches and tables dotted around where people would sit and socialise. This made it impossible for me to move from one part of the event to another, without being bombarded with input and overloaded.

Even the entrance of the venue was overloading. Right inside the front doors at registration time, there were stalls along the walls and a huge crowded queue filling up the space. You couldn’t even get in to the event without a sensory assault. I can’t bear to think about how many people might have arrived, taken one look at the entrance area, and left immediately.

The ideal low-input location is, essentially, ‘boring’. As little as possible for you to look at, hear, or pay attention to. Remember, this doesn’t mean there won’t be input for the people who want it (more on that later). But it means people who can’t handle input can experience the event with as little as possible.

Choice of intensity

We’ve covered the main areas of the event, and made them as safe and comfortable for everyone as we can. Now it’s time to provide the choices which will allow anyone to find an enjoyable and comfortable level of stimulation. There need to be multiple places where people can go to find different levels of input. The simplest version of this is to have a low-input room, and a high-input room.

The low-input room should have all stimulation reduced even more than in the main areas, and it should be strict. This room is for people to go to when even the quiet and comfortable main areas are too overloading! There should be no talking, low lights, no noise, and no moving lights, images, or objects. It should also ideally provide comfortable places for people to relax while they are in there. That means things like seats, cushions, and plenty of space to move around the area without bumping into things or each other.

The high-input room should have no restrictions on the input people can bring to it. This room should be able to accommodate people who need any level of input to be comfortable, no matter how high! People should be allowed to talk, shout, clap, make noises, jump around, and do whatever they need to give themselves enough stimulation. There should also ideally be sources of input for people to use if they need – things like sensory toys, lights, things to touch, move around, and play with. There should also be plenty of space because people may need to take up space to be comfortable, and don’t want to risk hurting or making each other uncomfortable.

Having these two options is the ideal minimum, but more is still better. More different levels of intensity and separate levels of intensity for different senses would be even more ideal.

Choice of format

This final point covers all the individual differences that don’t fit into just being over- or under-sensitive to one sense or another. Things like processing issues or specific intolerances mean that certain types of input may be difficult or impossible for a particular person to use or enjoy. So, choice is the key here too.

Whatever information, input, or experiences are provided at the event, should all be available in as many different formats as possible. If there’s a lecture, the slides should be available as a handout for people to read at the event (not sent out as an afterthought later). If there’s a written timetable, a visual representation should be offered too. If there’s a map of the venue, arrows or directions in words should also be provided.

All of these changes will allow autistic people with specific processing differences to take in the event in their preferred way. If someone finds it impossible to concentrate on or process spoken words, they can still appreciate a lecture by reading the slides or written summary. If someone is unable to understand a visual diagram, they can navigate the venue by using a different format of directions. These options aren’t just autism-friendly, they are vital accommodations for people with all kinds of disability. For example, people with hearing or visual impairments will benefit from having information available in multiple formats. Accommodations like this have no downside for anyone. No-one attending your event will suffer by being offered a choice of formats to experience.

Conclusions

Autistic people’s sensory needs are hugely varied and cannot be simplified. But accommodating those needs can be simple. There are only three basic ideas you need to remember when planning your event to be sensory-friendly:

  • Minimise unnecessary input in all necessary or main areas – make it ‘boring’.
  • Provide a range of possible input levels so that everyone can find their comfortable range – ideally at least a low-input room and a high-input room.
  • Provide all information and activities in as many formats as possible, so that everyone can experience the event in the best way for them.

Even these ideas can be simplified back to the basic principle: choice is key. People are all different, and autistic people sometimes especially so. The key to accommodating us is to recognise that we are all different, and give us all the option to find our own comfort.

Inclusive autistic traits

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose – they just add confusion.
  • Pathologising. This is so extensive it’s barely worth mentioning. Descriptions of autism almost universally describe it as a disorder, illness, or disease, and the traits as symptoms and deficits. This bias is both inaccurate and harmful.
  • Restrictive. Autistic people are so incredibly varied. And yet often, the only acknowledgement of that diversity is a mention of “both ends of the spectrum”, functioning labels, or a comparison of Asperger’s and classic autism. Not only are these trivial attempts at expressing the variation between autistic people, they are actively harmful in their own right.

Solutions

So, I’ve written my own. This isn’t a set of diagnostic criteria, because I don’t know how to diagnose autism. It’s my best attempt at an inclusiveaccurateuseful, and value-neutral, description of autistic traits and autistic people.

A lot of the things I’ve written feature directly opposite examples, like “may hate X” and “may love X”. This isn’t a mistake, it’s a reflection of how varied autistic people can be. Often, autistic people occupy extreme ends of the bell curve in any trait – but not necessarily the same end. Because I wrote this list to be inclusive, no autistic person will have every trait on it. That would be impossible, since many of them are mutually exclusive!

The point is to include the widest possible range of  autistic traits, not the minimum range of criteria needed to define autism. Instead of showing what things every autistic person will have in common (which would result in the kind of pitifully small and generally useless descriptions found elsewhere), this list intends to show you the greatest diversity you can expect to encounter among autistic people.

The list

With all that covered, let me get to the actual list. It’s divided into three broad categories of traits: social, sensory, and cognitive. These divisions are not perfect, but they’re the best way I’ve found of categorising, and they make it easier to understand the list. Each category is divided into sections (numbers) and subsections (letters), which each contain a list of specific example traits.

Social

  1. Differences in body language and nonverbal communication.
    • A. Different use of eye contact.
      • May use eye contact more or less frequently than others.
      • May use eye contact only in specific situations (e.g. only with familiar people, or only with strangers).
      • May use eye contact in different ways or at different times than others.
    • B. Different use of vocal tone.
      • May use less variation in tone than others, or not use tone deliberately to add meaning.
      • May use more variation in tone than others, or have a ‘sing-song’ quality to speech.
      • May speak more loudly or quietly than others.
    • C. Different use of gestures and body language.
      • May use fewer gestures than others.
      • May not use body language deliberately to communicate.
      • May use different types of body language than others to communicate.
      • May use gestures more often than others.
    • D. Different use of facial expressions.
      • May use less variation in facial expression than others.
      • May not deliberately use facial expressions to communicate.
      • May use different types of facial expressions from others.
      • May use more expressive or extreme facial expressions than others.
  2. Differences in verbal communication.
    • A. Different use of literal and metaphorical communication.
      • May use entirely literal language.
      • May use unusual types of metaphor and analogy.
      • May focus on precision and accuracy in words used.
      • May use words to have different meanings than others.
    • B. Different use of speech.
      • May have difficulty speaking in certain situations, such as under stress.
      • May not use words at all.
      • May use echolalia (repeating specific words or phrases) to communicate.
      • May have a strong preference for text-based communication or difficulty using speech.
      • May have a strong preference for speech or difficulty using text-based communication.
  3. Differences in interaction and relationships.
    • A. Different desire for relationships.
      • May not want or need social relationships much or at all.
      • May want specific types of relationships but not others.
      • May form unusual types of relationship dynamic or be less bound by social norms.
      • May be very reliant on social norms and rules to guide relationships.
    • B. Different preferences for groups.
      • May need one-to-one interactions and struggle in larger groups.
      • May need larger group interactions and struggle one-to-one.
      • May need more structure and rules in group interactions.
      • May find presenting to crowds easier than reciprocal interactions.
    • C. Different preferences for interactions.
      • May prefer practical and pragmatic interactions or have difficulty with unfocused interactions.
      • May not be able to focus on interacting at the same time as other activities or inputs.
      • May prefer parallel interactions or have difficulty with direct interactions.
    • D. Different social instincts to other people.
      • May have trouble communicating with others, especially non-autistic people.
      • May be drawn towards other autistic people for relationships.
      • May be socially outcast by others.
      • May feel like part of a different culture.

Sensory

  1. Differences in sensory sensitivity.
    • A. Over-sensitivity to certain senses or specific sensations (e.g. bright lights, specific textures, strong smells, loud noises).
      • May experience pain at sensations which others do not strongly react to.
      • May become ill or uncomfortable at sensations which others do not strongly react to.
      • May be distressed and want to avoid or escape sensations which others do not strongly react to.
    • B. Under-sensitivity to certain senses or specific sensations (e.g. pain, temperature, taste).
      • May not notice sensations which others usually react to.
      • May not be able to distinguish between sensations which others usually can.
      • May need more intense input in a certain sensation than others usually do.
    • C. Narrower comfortable range of certain senses or specific sensations.
      • May struggle to find a comfortable intensity of input.
      • May easily become over- and under-sensitive to certain sensations.
      • May need very particular type or intensity of input.
  2. Strong enjoyment, desire, or need for certain types of sensory input. Demonstrated by stimming (self-stimulation) behaviour.
    • A. Visual stimming.
      • May stare at certain lights, patterns, shapes or colours.
      • May stare at certain moving objects, changing or flashing lights.
    • B. Pressure stimming.
      • May apply pressure from weighted objects.
      • May sit or lay in postures which apply pressure from body weight.
    • C. Vestibular stimming.
      • May move in certain ways like rocking or spinning.
      • May seek activities which involve swinging, fast acceleration, or other types of movement.
    • D. Proprioceptive stimming.
      • May move body in specific ways such as hand flapping, waving, twirling hair.
      • May touch and hold onto objects and surroundings.
    • E. Tactile stimming.
      • May be drawn to the feeling of particular objects or textures.
      • May stroke or rub objects against certain body parts like hands and face.
    • F. Auditory stimming.
      • May use mouth, voice, and body to make particular sounds.
      • May use objects to make particular sounds.
    • G. Other types of stimming.
      • May be very drawn to specific smells, tastes, or other sensations.
      • May be very drawn to particular intense sensory experiences (e.g. spicy food).
      • May stim in ways which combine multiple different types of sensation.
  3. Other differences in sensory processing.
    • A. Different ways of processing multiple or combined sensations.
      • May have difficulty separating sensory experiences into individual parts.
      • May have difficulty combining individual parts into one sensory experience.
    • B. Difficulty with sensory modulation.
      • May have difficulty attending to relevant stimuli.
      • May have difficulty tuning out irrelevant stimuli.
      • May need a controlled environment with few sensory inputs at the same time.
    • C. Other specific differences or difficulties in processing.
      • May have trouble understanding or decoding speech (auditory processing disorder).
      • May have blending or merging of different senses (synaesthesia).

Cognitive

  1. Strength of focus and rigidity.
    • A. Intense focus and interests.
      • May spend the majority of time focused on few specific interests.
      • May concentrate on certain topics or activities for long periods of time.
      • May have strong emotional attachment to interest topics.
      • May have in-depth and expert knowledge about interest topics.
    • B. Preference for routine and sameness.
      • May have specific routines for days, weeks, or certain activities.
      • May be distressed and disoriented when routines or plans are disrupted.
      • May need to plan things carefully in advance.
      • May be more anxious than others when in new or unfamiliar situations.
  2. Difference in cognitive abilities.
    • A. Differences in executive function.
      • May have strengths or weaknesses in one or more types of memory (e.g. short-term, long-term).
      • May have difficult planning and executing a series of steps or actions.
      • May have difficulty identifying and solving problems.
      • May have difficulty concentrating on relevant information or input.
      • May have difficult starting, stopping, or changing activities.
      • May have poor impulse control.
      • May have poor sense of time.
    • B. Differences in experiencing and processing emotions.
      • May mistake physical sensations for emotions, and vice-versa.
      • May have difficulty identifying or naming emotions (alexithymia).
      • May have difficulty recognising or understanding others’ emotions.
      • May involuntarily experience others’ emotions.
    • C. Different spread of cognitive skills.
      • May have slower processing speed than others.
      • May have extreme strength in specific areas (e.g. nonverbal reasoning, language, music, mathematics).
      • May have face-blindness (prosopagnosia).
      • May have skills which vary more than others over time.
  3. Difference in thinking styles.
    • A. Different approach to details.
      • May have a strong tendency to notice details before, or instead of, overall ‘big picture’.
      • May have a strong tendency to notice overall ‘big picture’ before, or instead of, details.
      • May have difficulty creating examples from a general idea.
      • May have difficulty generalising from specific examples.
    • B. Different approach to patterns and systems.
      • May be skilled in recognising patterns.
      • May be skilled in identifying minor details and errors.
      • May be skilled in systemising subjects such as mathematics, science, puzzles, languages.
      • May enjoy organising and arranging information or objects.
    • C. Different ways of processing and making decisions.
      • May have a tendency for ‘black-and-white’ thinking and logical extremes.
      • May have a strong preference for particular ways of reasoning (e.g. logic, emotion).
      • May seem to think ‘outside the box’ or reach conclusions in different ways to others.

Variation

  1. Variation of traits.
    • A. Long-term variation.
      • May change throughout development from childhood to adulthood.
      • May change over years during adulthood.
    • B. Environment.
      • May be more sensitive to overload when already stressed, ill, or tired.
      • May use different social behaviour depending on social situation.
  2. Variation of presentation.
    • A. Conscious variation.
      • May deliberately mask traits in certain situations.
      • May use learned rules to replace instincts.
    • B. Unconscious variation.
      • May have learned masking behaviour from early childhood.
      • May have trauma or mental illness which affects presentation of traits.

Please use this list

I’d love for people to use this list, or descriptions based on it, in place of the triad of impairments and other flawed summaries. If you use it, please do credit this post – but really I care more about everyone having access to good descriptions of autism.

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.

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How to make your event autism-friendly, part 1: introduction

Posts in this series
[Part 1: Introduction]
Part 2: Sensory needs

Last week I went to a conference specifically aimed at autistic people. But considering that it was aimed at autistic people (and that many of the people who planned and ran it were autistic), I was surprised and disappointed by just how inaccessible the event was for autistic people.

This is going to be the first in a series of posts about how to make events accessible for autistic people. I feel like some of the things I’m going to write about will be obvious, and that might well be the case. But the fact is, I just went to an autism-specific event that ended up being very inaccessible to me and many other autistic people. So it can’t hurt to write about these things, in the hope that even one person learns something that makes things better for autistic people somewhere.

It’s really not very complicated to make an event comfortable and safe for autistic people, but people often seem to get their priorities wrong when they try. Sometimes they make certain very specific changes which are good for some autistic people but make no difference for others. Sometimes they focus on just one thing, on the assumption that it’s the only change they need to be perfectly accommodating. Sometimes they simply base their changes on inaccurate information and end up with completely the wrong idea.

The fact is, autistic people are all different. Different to non-autistic people, and certainly different from each other. If most traits in the overall population can be represented by a bell curve, then autistic people are more likely to inhabit the extreme ends of the curve – either end. If you randomly choose two autistic people, they are likely to be even more different from each other than two random neurotypical people.

Autism bell curve

So you can’t just adjust things in a certain direction and expect it to be perfect for all autistic people. If you make the lights dimmer, some autistic people will appreciate it, and others will find it too difficult to see anything. If you make the lights brighter, you have the same problem. The fact is, it’s simply not possible to individually accommodate every single possible combination of autistic experiences. So how do you deal with all these inconvenient variations? Provide choice, and lots of it.

This is the basic principle underlying pretty much all kinds of disability accommodations, and should be a key aim for any event which wants to be accessible to a wide range of people. It needs to be possible for people with all kinds of different needs and preferences to find a comfortable experience at your event, otherwise it’s not accessible.

In my upcoming posts in this series, I’m going to write about specific types of autistic traits, and give advice on how to accommodate them. I will, of course, be writing mostly from my own experience. But my own experience also includes knowing and talking to a lot of other autistic people, and I hope I will be able to provide an overview that will help an event be accessible to all kinds of autistic people.

Swimming pool theory

Autistic people are often stereotypically described as being detail-focused or unable to see the big picture. But to me it’s always felt like an unsatisfactory description to call someone either detail-focused or “big picture”-focused. It’s impossible to do one without the other. I think the more significant factor is about how naturally or easily a person can go from one to the other, and how they use them to learn. Me and my dad have been working on a theory to describe the different learning styles that arise from this – it starts with an analogy.

The swimming pool

Imagine that the system of knowledge you want to learn (say, the rules and applications of a certain mathematical method) is a big, oddly-shaped swimming pool full of water. You get dropped in the middle of the pool, and the aim of learning is to map out the entire area – to find out where all the water is and where it ends. There are two main ways to go about this, which I’ll call the extrapolation method and the interpolation method.

Extrapolation
You start your map of the swimming pool by taking note of the spot you’re in when you start. You can map a certain distance around you that you can see – say, a few feet away from you in all directions. You start to paddle around, gradually mapping the new areas that you swim to. Your map grows from the place you started, in whatever shape you decide to paddle.

Gradually your map expands at the rate that you swim around. Eventually, you will have paddled around enough to have a pretty accurate map of the pool. You’ll probably have the odd patch which isn’t mapped, but you’ve got most of it recorded accurately.

Interpolation
The interpolation method is like being extremely short-sighted. You can’t just add the surrounding area to your map. You might be able to keep track of the path you take, but you can’t map a large enough area around you for that to be an efficient way to learn. You can barely “see” beyond the end of your nose. You’re not aiming to map whatever area you swim to. Instead, you have one clear goal: you swim around, looking for the edge of the pool.

Once you find the edge, you stick to it, and start making your way along. You carefully map out the line of the edge, all the way around. Eventually you get back to where you started – you’ve got the entire outline of the pool mapped. In one instant, your map of the entire pool fills in. You know that the pool is a solid body of water, so you immediately know exactly where the rest of the water is.

Beyond the swimming pool

In case it’s not obvious, the swimming pool part is largely irrelevant – it is nothing but an analogy. The point of the theory is that there are two main ways of learning. The difference is which “direction” a person can most easily move in – from details to general ideas, or from general ideas to specifics.

Extrapolaters are good at starting from one particular spot and finding nearby information (they can see a reasonable distance out across the water from wherever they are). They can create a fairly complete knowledge system just by moving from specific to specific, and example to example. But they have less ability to fill in gaps just from finding the edges of the system.

Interpolators can’t easily see from one specific to another or learn lots of details in one go. But they are good at finding the outlines of information and filling in from there. Their instinct is to find the edges of what they want to learn, which makes them good at getting systems of knowledge without any gaps.

Neither of these methods is better than the other, of course. They both have different perks. The extrapolation method increases your knowledge gradually as you go along – if you stop halfway through the learning then you have half of the knowledge. The interpolation method ensures that you have 100% of the knowledge once you’re finished – there’s no chance of any unmapped patches by the end.

But I don’t think the method a person generally uses is a just a choice every time. I think it’s mostly defined by innate traits like how much a person can “see” around the details they are focused on, and how easy they find it to fill in an area that they’ve outlined. Based on those abilities, each person will have an instinct for how they learn best – and might not even realise that other people do it differently.

There’s also no clear binary distinction between the two methods. Each person just has different preferences and tendencies – some people might have a strong drive towards one method, some people might find it easy to switch between the two. And I’m sure I’ve oversimplified my explanations of these learning styles, and not everything fits into them anyway.

Teaching and learning

Most teachers start a lesson by giving examples of the problem – challenging students to find the “big picture” themselves is supposed to be an effective way of teaching. And it must work well for a lot of people, otherwise it wouldn’t be so popular. Extrapolators can instinctively generalise from being given examples, and find it easy to add new knowledge in little chunks at a time.

But I’ve always found it difficult – if not impossible – to learn general concepts from examples. I can’t work out the “big picture” if all I’ve been given is specifics. When I’m taught in this way I end up frantically paddling around, barely able to see where I’m going, and desperately hoping I’ll find an edge that I can stick to in order to teach myself the rest – all while I’m expected to have already started filling in a map of the places I’ve passed through.

 

Extremes

I don’t know whether this is an autistic trait. My instinct tells me that it could be, but I also have a strong suspicion that my instinct will turn out to be wrong. Both me and my dad are extreme systemisers and extreme interpolators, and so my clearest idea of an autistic thinking style is based on that. But I have no idea whether it’s accurate for other autistic people, or if I’m just assuming there’s a connection because they happen to coincide within my family.

My secondary hypothesis is that the learning style (interpolation or extrapolation) is not the autistic trait in itself, but that it’s an autistic trait to have an extreme preference for one or the other. That would correspond with the way that autistic people often seem to be at one end of a bell curve or the other, in things like sensory preference and various other traits.

I’m really interested to hear input from other people on this. Are you an extrapolator or an interpolator (or maybe you think my distinction is meaningless)? Do you think a preference for one or the other is an autistic trait? Or that a strong preference in either direction is? Do I have completely the wrong idea trying to describe things this way?

Familiar strangers

I can be pretty good at talking to strangers. I can get through a targeted and purposeful interaction by being my natural affect-less self. That rarely seems to bother people – at least not that I’ve noticed. I can pretty easily pass as being ‘just’ in a hurry or distracted, and the other person can handle that without being uncomfortable.

It becomes much more difficult when I’m interacting with someone who isn’t a complete stranger. I go to my local pharmacy about twice a month to collect prescriptions. There is one person who works there most of the time, who has come to recognise me. I was perfectly happy to keep our interaction the same as it’s always been: I give my name, they go and bring my prescription. But before long they learned my name and didn’t need to ask for it any more.

It’s only as I write this that I realise most other people in my position would have developed their relationship with the pharmacist more than I have. I have never spoken to the pharmacist about anything other than my prescriptions. Ever. Not about the weather, not about my day, or their day, or local news, or anything at all that’s not related to the specific reason I’m there. The idea has literally never occurred to me.

Why would I talk to them about anything else? It would just confuse me. It would distract from the purpose of that specific interaction (i.e. to get my prescription). But it would also blur the definitions of the relationship. A pharmacist is someone you talk to about prescriptions. A friend or family member is someone you talk to about the weather (or your day, or their day, or the news..). Why would I talk to the pharmacist about ‘friend-level’ subjects? Am I trying to become their friend? It’s not very likely.

It’s not that I don’t like the pharmacist – I really do! They bring my prescriptions, they’re always helpful if there’s been a mistake or delay, they never seem rushed or distracted. They have all the qualities of an excellent pharmacist. I just don’t seem to have the connection that some people have: “If you like a person -> expand the interaction”. That doesn’t make sense to me when the interaction is happening for a specific purpose. I’m never actually going to become friends with my pharmacist, so there’s nothing to be gained from expanding the interaction.

It seems like other people do gain something from interacting with strangers or people they only know in a certain context. And not just that, but it’s also an instinctive reaction. I frequently see family members interacting with strangers and acting ‘friendly’ without even seeming to notice – sometimes they even deny it when I point it out! It’s so automatic that they can barely conceive of the idea of not doing it, so they don’t realise they are actually ‘doing’ anything. They would only notice if they saw me interact with a familiar person like the pharmacist, and recognised that I was definitely not doing it.

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.