Monthly Archives: October 2014

Neurodiversity, language, and the social model

Neuro-what?

neurodiversity the diversity of human brains and minds.

The neurodiversity movement is an approach that recognises neurodiversity as natural and positive, similar to natural diversity in gender, sexuality, race, and more. The approach also states that the idea of one ‘natural’ or ‘right’ form of neurology is socially constructed and inaccurate.

Note: people who support the neurodiversity approach (like me!) still use the word ‘neurotypical’. That’s because there is a societal idea of a normal or natural neurology. Yes, in an ideal world, there wouldn’t be. But most people see it that way, so neurotypical is an important word to describe someone whose neurology is considered normal in current society.

Models of disability

A disability is something which limits or reduces a person’s abilities in a certain area. An impairment is something which is different about a person’s body or brain that means it cannot function so effectively. There are several different models used to define and describe the relationship between disability and impairment.

You are probably most familiar with the medical model of disability. The medical model states that a person is disabled by their impairment (for example, a paralysed leg). The way to fix that disability is to ‘fix’ the impairment. The disability is seen as inherently negative, and should be eradicated however possible.

The social model states that a person is disabled by society. The person might have an impairment (e.g., a paralysed leg). But that impairment only becomes a disability when society fails to accommodate them (e.g., not having a wheelchair-accessible entrance). An example of the social model in action is short- or long-sightedness. These impairments are not considered disabling, because glasses are so readily available and accepted.

The social model states that the way to improve a disability is to improve the way society treats a person’s impairment. Note that it doesn’t say people’s impairments must not be cured, simply that cure is not the only option and should not be forced or expected.

Neurodiversity and the social model

The neurodiversity movement is heavily based in the social model. Impairments in human brains (for example, epilepsy, or depression) are not inherently flaws. They become a disability when society does not accommodate them, or discriminates against people for them.

Neurodiversity also adds another complicating factor, though. The social model of disability makes the distinction between impairment and disability, but the neurodiversity approach also includes things which aren’t necessarily impairments at all.

Autism is an example of that. Autism is pervasive and incorporates a person’s whole existence. It consists of a wide variety of different traits, some of which are impairments and some of which aren’t. For example, I consider my predisposition to anxiety to be an impairment. It’s a fundamental problem in the way my brain works, that makes it harder for me to function effectively.

But I don’t consider my atypical communication to be an impairment. That’s just a difference, which is pathologised because autistic people are a minority. If autistic people were the majority, then neurotypicals would be diagnosed with “inability to use concrete language” and “excessive reliance on other people for happiness”.

The key feature of neurodiversity and of the social  model is that the impairment or difference is not the problem. People are diverse in all kinds of ways, and treating those differences as inherent flaws is just a result of society’s harmful views. The neurodiversity approach doesn’t say that impairments shouldn’t be cured, or that people aren’t allowed to want treatment for them. If I could take a magical cure that would put my anxiety on a level with neurotypical people, I would do it in an instant.

The point is that being cured or treated should be our choice , and that if we don’t want to or can’t be treated then society should accommodate us. I can’t cure my anxiety, and so I need other people to help me deal with it. I wouldn’t want to cure my communication differences, and so neurotypical people will just have to meet me halfway when we’re trying to understand each other.

Language

The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.

You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.

People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.

Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.

The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.

When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.

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.

 

Defining stimming

I’ve written about my own stims before. Even when I wrote that post, I was a bit doubtful about the idea of a defined concept of ‘stimming’. And since then, I’ve become even more unsure.

Everyone defines stimming differently, and gives it a different purpose. I think the reason it has such a vague non-definition is that it’s a word coined by neurotypical people to describe whenever an autistic person did something they thought was ‘weird’. From the outside, it’s impossible to know what someone’s thinking or why they are doing something. So that means that a whole lot of different things end up being lumped together under the word ‘stimming’, making it not very useful.

Here are some of the reasons I do things which would be classed as ‘stimming’:

  • I actively enjoy it – e.g. pressing something that makes a clicky sound.
  • I don’t know why I do it, it just happens without me noticing – e.g. I rock automatically when I’m sitting down in certain positions, and it requires active concentration to not do it.
  • A kind of in-between of the previous two: I feel uncomfortable if I’m not doing it – e.g. folding up my legs when I’m sitting in a chair.
  • To release nervous energy – e.g. I pick my fingers and click my jaw much more frantically if I’m anxious or excited because I have twitchy energy that has to go somewhere.
  • To block out or process bad sensations – e.g. when I’m somewhere loud I often tap my hand rhythmically to give me something to focus on.
  • To express myself – e.g. when I’m excited, freaked out, confused, (or… pretty much anything now I think about it), I sometimes do a single very quick hand-flap.
  • To handle bad emotions – e.g. when I’m very anxious or upset I sometimes punch my leg because it feels grounding.

And I’m pretty sure there are others too.

Looking back at that list, I think it can be divided into categories (nothing like a bit of categorisation to help me understand something!):

  • For the sake of the sensation. This includes things which are enjoyable, things which are automatic, and things which make me feel more comfortable.
    I’d say that this category is entirely the result of a weirdly wired autistic sensory system. Everyone has sensations they find enjoyable, some of mine are just a bit more unusual. Most people find themselves moving automatically every now and then, it just happens more often and in different ways for me. And a lot of people feel more comfortable in certain sensory situations, they just maybe have a wider range of what’s good for them.
  • To deal with bad stuff. This includes processing my own emotions, bad sensations, or anything else which causes me stress.
    I think this category is the intersection of an autistic sensory system and an autistic brain. The autistic brain part is what causes us to get more stressed or bothered by things which NTs can handle (like an unpleasant sensation or a negative emotion). The sensory system part is what allows us to be comforted or calmed by specific sensations or actions.
  • Body language. A lot of my body language is similar to NT people’s, but a lot of it isn’t.
    I would put this category firmly in the autistic brain section. Whatever it is that’s different in my brain, it give me different instinctive ways of expressing myself.

I’d be interested to know whether these categories resonate with other autistic people.

Sensory sensitivities

Sometimes having sensory sensitivities makes me more able to deal with unpleasant things than most people. I’ve had to learn to handle bad sensations my whole life, so it means I’m better at ignoring things that other people find intolerable.

Most of my sensitivities are to do with either smell or eating. I get easily stressed out by loud and bright things, but there aren’t any specific visual or auditory sensations that bother me in the way some smells and foods do.

One of the worst smells for me is a specific “car smell”. A lot of people would probably say that cars don’t have a smell, or at least they don’t all smell the same. But, they do! It does vary from car to car, but they all have a very particular combination of a few things: a hint of petrol/diesel vapour, the musty and usually damp air, and the plasticky materials of the interior.

That smell feels like a physical threat to me. It makes me feel ill, it gives me a headache, and I get stressed and anxious. I’m more used to the smell of my family’s own car, which is one of the reasons I don’t like going in other people’s. When I was little I tried to explain that the smell of my aunt and uncle’s car was the reason I didn’t want to drive with them. But no-one really understood, because most people don’t notice or care about the “car smell”.

So, all my life I’ve had to learn to tolerate something which feels intolerable. Depending on the situation I just try to avoid the smell by breathing with my mouth, or I reduce it with open windows and air conditioning, or I just get used to it – some days it seems less strong than others.

It’s pretty clear that I have a reduced neurological tolerance for some sensations. My brain and senses get frazzled by certain things much more easily than most people. But as a result of that, I’ve developed an increased conscious tolerance. I’ve had to teach myself to push on even when my brain is telling me to freak out about a sensation.

Which means that when a sensation arises which is equally unpleasant for me and other people, I often handle it better. If there is a mysterious drain smell coming from the sink, everyone in the household freaks out more than I do. Because, what’s new? There’s a bad smell – it’s not a rare occurrence for me. So I assume that I’m being oversensitive as usual, and that I should put up with my discomfort because other people won’t care. Then when other people do care, it’s quite unexpected.  I find myself wanting to reassure them that they can handle the bad smell, because I feel so much more experienced with that than they are! Which is pretty strange when I’m the youngest person in the family.

 

Asking for help

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

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

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

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

  • Recognise that I’m having difficulty with something

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

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

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

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

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

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

  • Recognise that another person could provide that specific thing

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

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

  • Decide which specific person can provide the thing

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

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

  • Decide how and when to ask the specific person

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

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

  • Actually ask the person

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

In practise

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

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