Defining #Neurodivergent

Defining #Neurodivergent

‘When I use a word,’ Humpty Dumpty said in rather a scornful tone, ‘it means just what I choose it to mean — neither more nor less.’

Lewis Carroll, Through the Looking Glass

I’m neurodivergent. It’s easy for me to say that, knowing that I’m autistic and that autism is invariably listed as an example of neurodivergence. But can we describe it better than by compiling a checklist of medical diagnoses? It’s tempting to go with Humpty Dumpty and say it means what I choose it to mean, but this doesn’t help when trying to communicate the idea to others.

One of the aims of the Neurodiversity Movement is to move beyond a view of the rich variations found in the human mind that is dominated by the medical model and its diagnostic lists of symptoms and traits framed as deficits and impairments to be treated and fixed. To that end, the Movement has embraced the social model–based on the social model of disability–that focuses on the needs of the individual and the barriers they face.

While the medical model is flawed because its perspective is of a person having things “wrong” with them needing to be fixed, there remains a need for diagnosis and medical treatment: I’m certainly not suggesting that we abandon medicine. But it should never be a goal to “normalise” neurodivergent people, to “fix” or hide their traits for the comfort of others around them who see those traits as wrong or broken. This is significantly different in terms of motivation from an individual seeking treatments and/or accommodations to help them overcome barriers in their life.

Individuals do not exist in isolation. If they did there would be no need for concepts such as neurodivergent which exist to define a subset of people in wider society. Neurodivergent defines a relationship between a given individual and the society in which they live, a relationship based on how that person experiences the world, and how they respond to and interact with their environment including other people.

If it were possible to quantify the differences in thought and sensation, reduce that complex experience to a number and plot a graph including everybody’s scores, then you would find that most people cluster around the middle. But you would also see that a significant minority fall outside that cluster, tailing off in each direction: it would resemble the chart below.

Example of “normal” distribution with arbitrary numbers

At each end are the scores that diverge from the majority, and in the middle are the ones which are typical. But where is the line that separates divergent from typical? Well, there isn’t one: there is only a progression from more typical to less typical; from less divergent to more divergent, each morphing seamlessly into the other. There is no cut-off point; there is not even a meaningful boundary.

Neurodiversity is similar to this simple score-based model, except we have no way to put a number on a person’s degree of neurodivergence. So how can it work if we can’t measure how neurodivergent somebody is?

The simple answer is that in the majority of cases either a person recognises that they are different from most others around them or people around them recognise that that particular person is different. Where the difference or differences correspond to neurological functioning–differences in learning, language, sensory processing, personality and many other traits–that is neurodivergence.

Some of these differences correspond to medically-defined conditions including autism, ADHD, epilepsy, Tourette Syndrome: these have been identified and described medically because they are instances of divergence. This doesn’t mean that any diagnosis is required for somebody to be neurodivergent: something does not need to be considered medically significant for it to be a significant neurodivergence.

Deciding what is significant defines the limits of what we consider to be neurodivergence. This is where the answer becomes less simple, but more important. More significant, if you like. These are what’s often referred to as the edge or corner cases. The majority of neurodivergence is pretty easy to define in terms of recognised conditions and that’s how most people view it, but it’s important not to restrict our definition to that and only that.

If I take autism as an example, there are traits that might differ in degree and not meet the arbitrary, subjective levels required in a diagnostic situation (I say arbitrary and subjective because the requirements differ between diagnostic manuals and between practitioners) but that do affect how a person experiences the world: while it’s not true to say that everybody is “a bit autistic”, it is true that some are in the fuzzy area that lies between neurotypical and autistic. There’s no clear cut-off between autistic and non-autistic, but at the same time the majority of people are generally identifiable as one or the other.

Many autistic people are able to identify their own autistic nature and that of other autistic people with or without a formal diagnosis because of their awareness of the traits of autism and because they can relate that to observations of the people around them. This is reflected in the wide acceptance of self-diagnosis within the autistic community, although it’s rather less widely accepted outside of those spaces.

A recognition of the validity of self-identity or identification by one’s peers is important when diagnosis may be based on incomplete or biased medical definitions of conditions, when diagnosis may be inaccurate, or when access to diagnosis is not universal.

What I’ve described in the case of autism applies more generally to all instances of neurodivergence. While the core may be well- and even objectively defined, at the edges–out of necessity–we fall back on subjective assessment and judgement of what qualifies as significantly neurodivergent. Just as with formal, clinical diagnosis there will be questionable, debatable decisions.

In conclusion, neurodivergence encompasses conditions including but not limited to autism, ADHD, dyslexia, Tourette’s Syndrome, epilepsy and PTSD. It includes anything relating to neurological function that results in one or more significant differences from the typical range of functioning in the wider population. What counts as significant may be decided by the individual or by consensus within society, and cannot be defined objectively.

The Wall: A Tale of Sensory Distress

The Wall: A Tale of Sensory Distress

Today I hit a wall.

Some days you keep going, push through, find your flow and coast home. Not today.

I woke sweating around 7am. The sun was up, the day warming. Warming my bedroom a little too much it would seem. I hate that clingy feeling as the sheets adhere to my damp skin where it’s not covered by my pyjamas. I kicked off the duvet–I especially hate this transitional period in the weather between comfortable and hot, when I awake early feeling too cold if I lie on top, and wake drenched as if I’ve come from the shower if I get under the covers–turned over and tried in vain to grasp the fading tendrils of sleep.

It wasn’t to be. Sleep, once departed from the stage, was unwilling to put in a curtain call, however brief.

I’d had about 6 hours sleep which sounds okay unless you–like me–are the kind of person who really needs her sleep if things aren’t going to go south at some point.

I could tell I wasn’t quite right after I got to work and needed to put my headphones on almost immediately to cope with the noise level from the air conditioning, computers and people. It’s a strange feeling: each of the noises is not particularly intrusive and I can usually filter them out. But when I can’t do that, often because of tiredness, they start clamouring for attention and my brain hops from one to another in a vain attempt to glean some meaning from the signal. They’re beaming in and my brain just shrugs, “What’s the frequency, Kenneth?”

So I plug in my headphones, put them on, and first up on the Spotify playlist is Loose Fit by the Happy Mondays. Top, sorted tune: guaranteed not to twist my melon, know what I mean?

Things are feeling okay until we have our team meeting, where we stand around and tell each other how hard we worked yesterday. Well, there’s other people talking in far corners and my hearing starts going a bit “glitchy” where all the words pile in from every direction and jumble together.

By the time we get around to my turn I’ve had to sit down because I’m getting disoriented and slightly confused by all the sounds. I make it through and crawl back under my headphones to be soothed once more by the aural nectar of proper Manc voices singing the best that the 90s could produce in what was for a time the music capital of the known world. (Okay, I admit it: I’m into that whole Madchester sound. What can I say? I was born in Manchester and grew up with those bands.)

Fast forward a few hours and the magic of the noise-cancelling headphones is starting to wear off. Don’t get me wrong: they’re fantastic and I can get through a lot more with them, but they’re no substitute for an environment that’s sensory-friendly from the start. I’m at the point where my tiredness kicks in and my tinnitus starts to intrude. That’s something the headphones can’t help with; indeed, they often make it harder to ignore.

My tinnitus isn’t loud but it is constant. And it saps beneath the walls of my ability to bear it, gradually weakening them until at last they fall and I’m left with no defence against its assault on my senses.

So far I’ve only mentioned noise and hearing, but one of the effects of sensory overload is that it increases the responsiveness of some of my other senses, particularly my sight. In basic terms, light appears brighter.

Of course it’s not quite that simple because my vision gets “glitchy” in a way that kind of equivalent to my hearing, which I guess makes sense. As well as seeming brighter, everything gets a bit sparkly and where there’s contrast between lighter and darker–something like, say, text on a screen that I’m trying to read–it all gets a shimmery aura around the edges that is distracting as all hell.

So that’s what I was experiencing this afternoon when it finally reached the point where I couldn’t stand any more. Will power wasn’t going to overcome it no matter what: I’d run into the brick wall of my physical and mental limitations. So I did what any sensible person would do: I gave up and went home.

Er, no, I didn’t. That’s what a sensible person would do, but I think I’ve managed to demonstrate time and again that I’m not one of those. No, what I did was find a vacant meeting room and lie down on the floor with the lights off for a little while until my head stopped clamouring. And then I got up and went back to my desk and tried again.

This is far from the first time I’ve had sensory overload at work, and every time I keep trying and pushing myself in the hope that this time it’ll be different and I’ll be fine. And do you know what?

I wasn’t. I never am. This time was just like every other time: a failure.

Okay, perhaps failure is harsh but that’s how it feels, and every time I fail the cracks inside open up a little more: I become a little more broken. Because I ought to be able to handle it, or so the voice in my soul says. And it wouldn’t lie to me, would it?

More Thoughts on #Neurodiversity

More Thoughts on #Neurodiversity

The concept of neurodiversity (see my previous post) is simple, concise and neutral. Unfortunately that’s only the starting point for something a whole lot more complicated. Here I will try to explore and explain some of that complexity.

Dichotomy Dialectic

Something that’s become tied into neurodiversity, despite that concept having nothing to say about it in any way, is the idea that the neurodiverse world can or should be divided into two parts, often labelled neurotypical and neurodivergent.

These groups are supposed to differ along lines of cognitive function or neurology (i.e. different “neurotypes”), and that difference results in impairment, disability, prejudice, oppression, or other inequality and inequity for one group compared with the other.

Reasons for defining a group like this include:

  • to provide an overall identity for the purpose of referring to people in an all-encompassing and inclusive way,
  • to enable collective action by and/or for the group,
  • to foster solidarity through a shared cultural identity.

The Social Model

Most of the existing activity around neurodivergence neatly parallels the social model of disability, and indeed has been informed by that. Like its disability counterpart, the neurodiversity social model is primarily intended to politicise the struggles of neurodivergent people, thereby raising awareness and challenging existing societal norms.

While the social model of disability has been successful in furthering disability equality and rights, it has arguably been much less successful as a tool for communicating and explaining the experiences of disabled people. Indeed, for most people disability remains synonymous with physical impairment.

Part of that is because it is essentialist in that it positions disabled people as one group and de-emphasises the individual in favour of a “sameness of difference” approach. It also serves some members of the group better than others: a focus on physical impairment and adjustments to the social environment has historically left learning-disabled people and others whose disabilities are not primarily physical still facing the same obstacles.

The social model as applied to neurodiversity can be expected to have a similar impact and success, but we need to remain aware that like all models it has limitations.

The Problem with Neurotypical

Neurotypical is a term that’s been around a while and is generally used to refer to those people who are not autistic or otherwise neurodivergent (I’m not going to focus on its informal use to mean non-autistic). But it’s not actually a thing that exists: the whole point of neurodiversity is that there’s simply diversity.

If you separate autistics from the general population, then take away dyslexics and those having ADHD and so on, then you’re not left with people who have one particular neurotype: they’re still neurodiverse. What we often call neurotypical people are neurodivergent from each other. Because that’s simply the fact of human variation.

Neurotypical (NT) is a social construction, a convenient fiction to collect together all those who aren’t any form of “neurodivergent” (ND). Whereas neurodivergent is… You see where I’m headed here? Each one is essentially defined as not being the other: everybody is either NT or ND. So there’s presumably a line between them, but where do you draw it? That’s tricky, to put it mildly.

The other problem I have with neurotypical is that whichever way you come at it you end up falling back on the idea that there is something deemed “normal” or “typical” from which everything else deviates. It gets dressed up in quotation marks, called a societal standard (which is just another way of saying it’s a social construction), but that’s all playing footsie with definitions that basically mean society has a concept of what it means to be normal.

I can’t speak for other people, but I find it difficult to argue against the idea that somebody can be “normal” using terminology that is underpinned by that very idea.

What’s Wrong with Normal?

Normal is a very familiar idea and one that we use in all kinds of places to mean standard, usual or typical. (For example, “What do you normally drink?”) It’s immensely useful, except that it has this well-established use when talking about “normal people” to mean people who are, as the dictionary describes it, “free from physical or mental disorders”. As soon as you start talking about differing, or diverging, from “normal”, people will infer that you are talking about “physical or mental disorders”.

The idea that some people’s neurology makes them “normal” carries the implication that this is the default, preferred state: after all, doesn’t being normal mean there’s nothing “wrong” with them? That’s language as commonly used here and now. But then by extension somebody who is neurodivergent would have “something wrong” which leads to the inference that it’s something to be fixed or cured.

Some instances of neurodivergence may not have any significant impact on the person’s life, some might be disabling or life-threatening, and many more will lie somewhere in-between. While some neurodivergent people might desire treatment or a cure, this is not the case for all and, more importantly, does not have any bearing on their status as neurodivergent.

That’s why I’m loath to use “normal” or anything derived from it.

What About Neurodivergent?

Neurodivergent is a useful umbrella term that allows us to refer to an entire group of people whose cognitive/neurological characteristics put them at risk of, or cause them to be subjected to inequity or inequality. I’m describing it this way for a reason: I’m deliberately avoiding any mention of specific conditions, or of what might be considered “normal”. I don’t even mention neurotypes. Instead it’s about the consequences of being neurodivergent.

The more usual definitions of neurodivergent have the same problem as neurotypical: they depend on the idea that one can have a normal or typical neurotype. The big question for me is whether it’s possible to define neurodivergent in a different way that doesn’t depend on anybody being neurotypical, being “normal”. Does it even make sense to do that? After all, it’s already been defined as being the opposite of neurotypical.

There’s nothing in principle stopping a group or set that’s historically been defined as being the opposite or complement of another being redefined in a different way: in terms of what it is rather than what it isn’t. We would need to step away from a literal reading of the “divergent” part and instead start thinking of neurodivergence in isolation. The alternative is to adopt a new term, or re-purpose a different existing one, thereby getting away from the whole typical/divergent dichotomy altogether.

I do have reservations about neurodivergent because of the way it holds the mirror up to normal–sorry, I mean neurotypical–with its implication of “divergence from”. For now I’ll continue to refer to this group as neurodivergent because I don’t have an alternative to hand, I’m rubbish at coining neologisms, and there’s more than enough different terms flying around already as it is.

As far as the definition of neurodivergent goes, there’s something to be said for treating it as a social construction in isolation from neurotypical. I think we’re most of the way there already in that an increasing number of people are using ND as an identity, and–as the popularity of labelling historical figures autistic or otherwise neurodivergent shows–it can be a perceived characteristic as well as something innate or acquired. We also already see movement towards describing various forms of neurodivergence primarily in terms of a collection of traits rather than deficits compared against some ideal, standard human.

What’s the Point?

It’s all very well going on about these definitions at length, but what’s the point of it all? What can we do with them? And why not just stick with autistic, dyslexic, etc.?

People with all kinds of neurodivergence face similar struggles for recognition and equality, and the same kinds of inequities. There is strength and solidarity in numbers. These are the same reasons why there is an umbrella LGBTQ+ identity that includes the whole range of sexual orientations alongside transgender people. Coming together under one banner works because for the most part any improvement for one constituent benefits most if not all of the others. As they say, a rising tide lifts all boats.

The language we use matters because it influences how we are perceived, which has a knock-on effect on how we are treated. It’s why we oppose the idea that there’s some aspirational normal that we’re failed versions of: we see that used as an excuse for inequity.

There’s a misconception that because neurodiversity proponents espouse acceptance of neurodivergence, we are opposed to any and all kinds of treatment or intervention. This is not the case. Rather, just like accepting disability and disabled people does not mean denying that some pursue treatment or cure, so accepting neurodiversity and ND people has nothing to do with whether they might want to seek treatment or cures.

What we do oppose is the exploitation of ND people and their families by those who seek to profit from their vulnerability.

What Can We Learn From Others?

I’ve already talked about strong parallels with the disability movement and neurodiversity’s adaptation of the social model. I also mentioned the similarity of neurodivergence to LGBTQ+ as an umbrella identity. But there are other areas of similarity that we can take notes from.

Neurodivergence has some equivalence in characteristics like gender where it’s becoming generally accepted that there is a lot going on beyond the over-simplistic model of mutually-exclusive binary genders. In this case, for example, there is a complex relationship between gender identity, gender presentation, and perceived gender.

The equivalent for neurodivergence would be this:

  • Identity: I’m autistic and therefore neurodivergent.
  • Presentation: I have traits that result from being autistic/neurodivergent. I am able to “mask” traits to some degree either with or without conscious choice, which affects others’ perception of me.
  • Perception: I can be perceived by others as “neurodivergent” because of my visible traits.

What I like about this framing is that it covers the perspectives of both the person (identity/presentation) and those around them (presentation/perception).

On the subject of identity, an important aspect of LGBTQ+ that informs a definition of neurodivergence separate from the medical/pathological world is the recognition of the validity of self-identification. In short, somebody is gay if they identify as such; somebody can be neurodivergent if they identify as being so. This is likely to be contentious because a number of people feel that only recognised professionals–medical professionals–should be empowered to determine ND status. However, I believe that given the desire to move away from the medical definitions of neurodivergence as a set of diagnoses we should embrace ND self-identification.

ND people face prejudice, discrimination and obstacles that relate to their neurodivergence, not to whether they have a particular medical diagnosis. Bullying at school and in workplaces occurs because people are perceived as different, not because they have any diagnosis. So it’s not reasonable to make recognition of identity–and needs–depend on diagnosis.

Finally, something that may or may need spelling out so I’ll add it just in case: the relationship of neurodivergence with disability. Like other identities such as Deaf, ND can equate to disabled in some instances, but it’s left to the individual to decide whether they are disabled based on their own situation and experiences. Neurodivergence exists independently from disability, meaning a person can be either, both, or neither.

WTF is #Neurodiversity?

WTF is #Neurodiversity?

Bust of an Ancient Greek, a people renowned for thinking about the complexities of human existence

Neurodiversity seems like a big thing right now, but what is it all about? And what’s with all the various neuro-this and neuro-that?

Neurodiversity

I’ll do the easy bit first: neurodiversity is the simple, observable fact that human minds are different from each other. Just like the variety of living organisms, which we call biodiversity. Same thing, only we’re talking about brains rather than plants and animals.

Neurodiversity by itself doesn’t say whether or not this is a good thing: it’s a neutral term that describes what we see when we observe human minds.

So what?

If that was the end of the story this would be a really short essay and you’d wonder why I even bothered writing about it. The fun starts when you pick up the neurodiversity ball and run with it. When you start asking yourself what it means, both for societies and for individuals.

When you think to yourself, “Biodiversity is good, right? Without bees and insects lots of plants would die and we’d all be struggling to survive here. So, is neuro-diversity good for us too?”

Time for a paradigm

Congratulations! You just arrived at the Neurodiversity Paradigm. What’s a paradigm? It’s a fancy name for a set of principles or propositions. It’s the proposal that neurodiversity is all part of natural human variety, just like we have diversity of culture, gender, belief, and even physical characteristics including height or eye colour.

It also proposes that, like culture, gender, belief, eye colour and all those other things that make us different from each other, no one type of brain is the “right” or “normal” one: all are equally valid.

Finally, it proposes that this diversity, like other forms of human diversity, is valuable and beneficial to human society and all of us as a species.

Enough theory already

Yeah, but what does that actually mean? What are these “different brains”? Surely we all have similar brains, right?

Well, no, not really. Mostly pretty similar up to a point, but then you get differences that we refer to as autism, or ADHD, or dyslexia, and many more that are all simply what we call it when people’s brains work differently. Process information from their senses, respond to stimuli, handle language or memory in a range of different ways.

This leads to these people having different experiences of day-to-day life, even when they’re in the same situations. because it’s their brains–their neurology–that are different we use the term neurodivergent. Divergent as in the way branches of a tree diverge or spread out from each other.

This is not saying that being neurodivergent doesn’t cause anybody problems in their lives–obviously it often does–and it’s not saying that neurodivergent people shouldn’t want or seek medical treatment or other interventions. In fact it’s quite the opposite: the aim is to improve the lives of neurodivergent people, but to do it on their own terms.

This is about social justice, eh?

Yes, that’s what all this is leading up to, something often called the Neurodiversity Movement that takes the Neurodiversity Paradigm and says that a person should not face discrimination or persecution because of their neurology, because of being neurodivergent from the majority of people around them.

This Neurodiversity Movement isn’t an organisation and doesn’t have a structure or leadership. It’s an umbrella term for a whole bunch of individuals and organisations who promote, support, campaign for the principles of the paradigm. For the civil rights of neurodivergent people.

Let’s go deeper

That all sounds fab and groovy, right? Yay, civil rights! And I agree, yes, it’s a good thing to protect the rights of neurodivergent people: those with neurologies (or neurotypes) that diverge from the most common (or predominant) ones in society, and to remove the prejudice and stigma associated with these forms of difference.

No objections so far. But remembering that neurodiversity is literally about everybody, how broad a term is neurodivergent? Who does it include, and equally importantly who does it exclude?

You won’t find much argument about including autistic people, likewise ADHD. Dyslexia, dyscalculia, dyspraxia: fine. Tourette Syndrome. Epilepsy? It’s a neurological difference even if it is potentially life-threatening, especially if untreated.

What about degenerative conditions affecting the brain such as dementia, Parkinson’s Disease, or Motor Neurone Disease? Or Traumatic Brain Injury? Do we draw a line and rule them out? Say we aren’t here for conditions we wouldn’t feel comfortable celebrating?

Should conditions that are brain-altering but pathologised (basically, regarded as disorders or diseases) be considered instances of neurodivergence? Certainly these people have to deal with the same kinds of stigma and prejudice as the neurodivergent folks I mentioned above. So shouldn’t they also be represented by the Neurodiversity Movement?

What about things we might consider mental illnesses? Depression, anxiety disorders? They affect brain function and perception. How about others such as psychosis or schizophrenia? Sadism, psychopathy, narcissism? Again, a lot of stigma associated with these conditions, a lot of prejudice.

I do think that it shouldn’t include temporary states of altered cognition induced by external influences such as drug intoxication, unlike more lasting, longer-term changes to brain function.

Still celebrating?

If we include everything that has anything to do with neurology or brain function, then we’re really inclusive and that’s good, right?

Except… You thought neurodiversity was about celebrating the differences of neurodivergence, and standing up against the medical establishment and others who seem to want to “cure” us out of existence. So how to reconcile that with including conditions that most would want to eradicate?

And if we’re including things most of us think of as mental illnesses, do we risk being perceived as being all about that? Of making neurodiversity almost synonymous with mental illness?

Do we then gatekeep, and make value judgements about what belongs in and what we keep out? Do we then risk being perceived as being unrealistically optimistic, focused only on the positive side of neurodiversity?

Or do we take a more holistic view about neurodiversity, and make the movement about the way society handles all forms of diversity, all forms of difference?

My evolving thoughts

I started out thinking in pretty simple terms about neurodiversity and neurodivergence: it was people like me. Autistic but without much else in the way of neurodivergence. From that I could relate to other forms of neurodivergence such as ADHD and dyslexia where the focus is primarily on accommodations and acceptance.

That gave me a comfortable picture of what it all meant, and it was a diversity I could feel at ease celebrating.

But I’ve recently begun to think a lot more deeply about the purpose of neurodiversity, what it’s really trying to achieve, and exploring the boundaries in an attempt to understand it better and answer some of the questions I had about its scope.

I feel I’m beginning to understand it better, but also feel a lot less comfortable and complacent.

Closing thoughts

I might seem unsure about what exactly to include, but I’m very uncomfortable with any attempt to ring fence neurodivergence and prescribe what is and what isn’t included. I feel that’s doomed to end up a question of deciding which are “real” or “acceptable” neurodivergence, and which don’t fit into a simple, neat world-view. It also falls into the trap of thinking about neurodivergence in the same pathological (“disease”, “disorder”) terms that reinforce inequality and create many of the problems we are trying to address.

The aim of neurodiversity–the movement—is to change the way society handles neurodivergence. The method is by changing how we all think about all forms of neurodivergence. At the heart of the problem is the idea that there is a “normal” neurotype from which all others diverge, and that such divergence is a problem to be corrected. Hey, I never said it was going to be easy!

It’s far from uncommon for people with all forms of neurodivergence to be pitied, abused, feared or otherwise face stigma, prejudice and to be regarded as less than people of the predominant neurotypes. This inequality manifests in power structures where neurodivergent people often have less control over their own lives, and face more pressure to cede control to others. This is a situation familiar to other non-neurological minorities.

Some forms of neurodivergence are positive and bring benefits to the individual and wider society, some are neutral, and some are negative and may pose some risk to the person or even others around them. Many more are some combination of positives and negatives, a range of different traits.

I believe that neurodiversity must inform how society deals with those whose neurodivergence poses a risk to them or to others. Current approaches are often punitive (via criminal justice systems), satisfying a desire for retribution rather than treatment or rehabilitation. Other approaches deem a person to lack competence, restricting or removing their rights. This makes neurodivergent people wary of seeking help or treatment.

Neurodiversity must find a balance between the needs of the neurodivergent individual and the needs of the society they live in. This means addressing questions such as when it might be acceptable to curtail individual rights, or to impose decisions on a person if they are deemed incapable of making a reasonable informed choice about something such as medical treatment. These are difficult questions, but that’s not a reason to avoid them.

Human society developed because living in organised groups benefits the members of those groups. Modern industrial societies are larger and require more complex organisational structures to function. As humans we like neat, simple answers. We often believe that problems can be reduced to a simple model that will explain everything. But the world doesn’t work that way. People are complex, society is complexity to the umpteenth power.

If neurodiversity is to succeed in changing society then I believe it must meet that complexity head-on. Altering attitudes and behaviour isn’t simple.

Further Reading

Probably the most widely-cited reference used to define neurodiversity is on Nick Walker’s Neurocosmopolitanism site that you can find here.

There’s also been plenty of discussion on Twitter, including this “in a nutshell” thread from Judy Singer who coined the word Neurodiversity.

Bursting Bubble

Bursting Bubble

Got that feeling
Unappealing
'stead of healing
Head is reeling
Down here kneeling
I'm appealing
To the ceiling
Are we dealing
With this rubble
Pressure double
Bursting bubble
Mental trouble

No digression
Just confession
My oppression
Is possession
By depression
Not transgression
I'm no sinner
Story spinner
Smirking grinner
Cheating winner

No, my inner
Light is dimmer
Feelings simmer
Barely glimmer
Feeble shimmer
Drowning swimmer
In salt water
Tears that oughta
Merit quarter
From this slaughter

But I'm fated
To be weighted
Inundated
Subjugated
Dissipated
Terminated

The acid test
Of my distressed
Emotive quest
Are you impressed
Or do you jest
While I attest
And bare my breast
With pain expressed?

Light I'm shining
Through my whining
Underlining
My declining
Disposition
Proposition
Hopeful mission
My ambition
Is transition
To remission
Not attrition
Of cognition

Fear and Self-loathing

Fear and Self-loathing

Funny old week. Funny old life, actually, and no mistake. I mean, it really brings it home to you, brings you down to earth with a jolt that might even knock some sense into your tired old grey matter, my girl.

It’s all so… Normal, I guess. No, that’s not it. Not what I meant. Close but no cigar, as they say. Whoever “they” might be. Did you ever wonder about “them”, wonder why or even how they say so much and everybody knows what they’ve said, but nobody knows who they are?

I did. I wondered. Sat awake nights thinking about it. About lots of the things people say. I bet most of the ones who’ve said things to me over the years don’t even remember half of what they said. Not half. Probably not even a tenth of the words they casually tossed at me. Like you’d throw scraps to a dog.

But that was better than the ones who aimed sharp words in place of stones. Teasing they called it. Horrible word. Dressing up their malice in bright clothes to make believe it was fun. I think it was fun for them. Fun to point at the odd one, make sure she knew she was on the outside.

“Sticks and stones” is what I got told when I objected. “Words can’t hurt you.” Those words right there hurt me even more because they told me I was alone.

Being alone. It is my normal, I’m used to it. Everybody leaves me in the end. Still, on the bright side if I’m on my own then there’s nobody there to hurt me more. Just me and my past, strolling hand in hand down memory lane.

Yeah, a dead-end street, that. Past the gutted wrecks and garbage, scabrous walls with the remains of graffiti. Don’t look too closely at where you’re treading, avoid the eyes that peer from shadows.

I remember when all this was trees, when the sun shone and I would run around, laughing. But that was before. You know they say you can never go back? Them again, they get about. Never go back. You want to know why I can’t go back? Because I never managed to leave.

The old home town, you wouldn’t recognise it. All that time, all those lives, gone. Dark now.

Yeah, funny old week, like I said. Being close to Death will do that, you know? All those thoughts of mortality, all that pent-up grief, all the weight of realisation that you don’t deserve to be the one left.

I should ask them why, next time they’re around. Who knows, maybe this time they’ll tell me.

Anyway, I’m doing fine. Thanks for asking. That’s what I’m supposed to say, right?

And you?

Life Lessons

Life Lessons

L’oratoire Saint-Joseph du Mont-Royal

A long time ago I wandered down a path, not knowing or even caring where it would lead. One step after another, one day after another, each much like the one before.

I had no real cares and I suppose that means I was happy. I never had a plan, you know? Never could picture any future except as a continuation of today. So I’m left to wonder at how I somehow got from there to here.

A tenuous thread of fallible memory is all that connects the grown woman sitting here writing these words to that child: how do I begin to explain the path I took? So much time was spent simply drifting along on favourable currents.

Parents and school didn’t prepare me for my life. Nobody handed me a map with my route helpfully pencilled in, or planted signposts to guide my steps.

Nobody taught me what it means to love somebody so deeply that you feel your heart torn asunder every time they hurt, or that you wouldn’t trade that pain for anything because the joy that comes with it lifts you to such heights.

Nobody taught me that there is an emptiness inside that you carry every day following the death of a loved one. That all the things you wish you could have said and done would continue to haunt you down the years. That missing someone so much kicks the breath out of you and leaves you gasping for air through your sobs of anguish.

I know now, as a parent, the strength of the drive to shield your child from the pain and hurt. To protect them from all the things that have hurt you. But I also recognise the futility of that. Indeed, I understand how such experiences are a normal part of life and open us up to much greater empathy for others.

Not the trauma though, never that.

That’s one life lesson I’d have happily played truant for. While joy and love and sadness and, yes, even grief all form part of the richness of life, trauma has no compensations.

So much wasted time, spent in fear and being made to feel that I was to blame. Spent in insecurity because I was more afraid of the unknown I’d face if I left, afraid that I couldn’t cope on my own. Spent believing that I was alone because that’s what abusers do to you through gaslighting and insidiously isolating you from potential support.

It’s so incredibly hard to come back from trauma. The effects–the scars–run deep and heal slowly if at all. My mind was reshaped by it, leaving me much more susceptible to anxiety and depression, and less able to cope with some everyday situations. In a very real sense, I’m not the same person I was before.

Recently I found myself in a church. It wasn’t planned: my particular friend and I were doing the tourist thing in Montréal, took the Métro to Côte-des-Neiges and walked up to St. Joseph’s Oratory. In the crypt church there we sat in contemplation, and as I reflected on my life I found my tears were flowing.

Not a religious moment, but certainly a spiritual one: I felt a release as if a weight had been lifted from me. When we moved on to the adjoining crypt with its ranks of votive candles I found myself in front of a board on which I noticed a single word: forgiveness.

Feeling a resonance within that moment, I decided to light a candle as a way of marking it. When talking it over later with my friend, they said something that seemed to fit: forgiveness is something we do for ourselves, not for the other person. I wasn’t forgiving the person who subjected me to emotional abuse; I was forgiving myself, absolving myself of blame for what was done to me.

I have other things I carry with me: the burden of bad choices. Times when I acted out of anger, frustration or selfishness. Times when I didn’t live up to my own moral and ethical values. Hopefully in time I will be able to forgive myself for these too.

The lessons of life hopefully teach us the knowledge and skills we need to survive and grow. I have learned no hidden secrets, no mystical arcana. What I have learned is that making the world a better place most often comes down to small kindnesses rather than grand gestures, and an important part of that is being kind to yourself.