Tag: Neurodivergent

Defining #Neurodivergent

Defining #Neurodivergent

by alexforshaw ♥ 3 Comments

‘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.

More Thoughts on #Neurodiversity

More Thoughts on #Neurodiversity

by alexforshaw ♥ 6 Comments

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.