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.

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.

A Bed of Roses Still Has Thorns – On #Autism and Cures

A Bed of Roses Still Has Thorns – On #Autism and Cures

As an autistic woman, would I want to be cured?

It’s a valid question, and one that I believe is worth exploring in depth because its simplicity hides a host of unspoken assumptions, assumptions that differ depending on who you ask.

What Is Autism?

Autism is not just a medical diagnosis based on a set of clinical observations, even though that’s exactly how it’s defined in manuals such as DSM and ICD. Those are just the outward tell-tale signs of a brain that works a bit differently from most.

I don’t pretend to understand how my brain works or how an autistic brain is different from a non-autistic one: I don’t know what exactly makes somebody autistic. I do know I can relate my experiences very strongly to those of many of the autistic people I know personally. I know that almost all my friends are autistic and that I have more trouble establishing close relationships with non-autistics.

One of the reasons that an autistic culture has arisen, especially since the growth of the internet made long-distance and alternative–not face to face and largely written–communication so much easier, cheaper and faster, is that so many of us relate to each other on levels that we can’t reach with non-autistics: this is a consequence of the double-empathy problem where each group has difficulty relating to the other.

Where you have a culture, you have an identity associated with it. So you often find autistic people speak about autism as an identity–a cultural identity–much more than as a condition or diagnosis. This phenomenon of autism as cultural identity is why so many of us feel a strong preference for referring to ourselves as autistic and not “people with autism”.

Neurodiversity

The concept of neurodiversity is strongly associated with, although by definition not restricted to, autism. In simple terms it is the idea that autism, ADHD and other neurological differences are all part of the normal variation of human brains. It’s the idea that these are differences, not faults.

That’s not to say that we don’t recognise the ways in which our differences can present obstacles in daily life. Some of these can be disabling, especially in a world that is largely shaped by and for the neurotypical majority.

The problem with the medical definition and view of autism is that it’s entirely based on deficits, on aspects that are seen as inferior when compared to the predominant neurotype. It’s like the old saying, “When all you have is a hammer the whole world looks like a nail”: when you always frame neurodivergence as a collection of faults, you only see it as something to be fixed.

Support Needs versus Quality of Life

So we come to one of the key points: many neurodivergent people have non-trivial support needs in their everyday lives. Many of us need assistance in one form or another, whether it’s with communication, mobility, tasks such as washing, dressing or eating.

Many people who don’t require such support would equate that with a poor quality of life but that’s not true. They assume that needing assistance means you lose autonomy, the ability and right to make decisions about things that affect you. The opposite can be true with the right support: it can enable someone to do things that they would otherwise be unable to.

Requiring support, even for basic tasks and activities, does not mean having a poor quality of life. Encountering prejudices and having support restricted or denied, on the other hand, does severely reduce the fulfilment in one’s life. There’s no scale from having a good life at one end to having high support needs at the other: it’s possible to have both.

Cure = Reducing Support, not Needs

This idea that requiring more assistance and support means that one has a worse life–because that’s the assumption made by people who don’t have such needs–is a key motivation behind much of the search for autism cures. There’s certainly money to be made for the corporations and medical professionals offering these treatments too, which is always a consideration.

The problem with such an approach is that it largely ignores the needs of people today, and the cure agenda is pursued instead of investing in support services. It’s a “jam tomorrow” scenario, made worse by the priority being which “jam” they feel will offer the best return on investment and not which one those receiving it might be asking for.

There is a history of research priorities being set without the input of those the studies are focused on, leading to unmet needs and a growing disenchantment with and mistrust of the medical establishment.

When this happens against a backdrop of cuts to social services and increasing barriers to access what remains, it’s no wonder that there’s considerable scepticism among autistics whenever some new prospective cure is announced. Indeed there’s growing anger that our priorities are routinely ignored or overridden.

Cure = Eradication

Some treatments are aimed at reducing or eliminating already-present aspects of autism–things like “improving” our social interactions or our ability to act “normal”. Others, particularly involving genetic manipulation, are intended to prevent autistic traits arising at all.

When we hear talk like this about “curing” autism it comes across as a desire to eliminate us as a people, destroy our culture, remove the core part of our identity. Eradicate that which makes us who we are, and so eradicate us. This is why there’s such strong opposition from autistic people to research into what from our point of view is no different from eugenics or genocide.

Would I Want To be Cured?

After all that, back to the question I started with. For me, being autistic is not something I can separate from how I see myself: it’s an intrinsic part of me, one of the aspects that makes me uniquely me. Without it I would not be me.

I feel at home in autistic culture, among people I can relate to and identify with. My people.

Anything that threatened to break the affinity I feel, that risked severing my feeling of connection to these people, would feel like it threatened my very life. Maybe even worse than that, because I would go on, cut adrift from the tribe that feels like home to me and I would be keenly aware of the loss.

But there are things I struggle with. I sometimes become overwhelmed by emotions and/or sensations and unable to express myself verbally, either in speech or even writing. I misunderstand people–neurotypical people especially–because I expect them to respond the way I or another autistic would. I have sensory processing and executive dysfunction.

Would I like to never again feel overwhelmed and disoriented by complex noise or too-bright lighting? Would I like to be able to remember what I came into a room looking for? Would I like to be able to keep my apartment organised?

These are areas where I want assistance. If there was a way to “fix” them while leaving everything else intact would I be interested? Maybe, but I’d need to be sure the cure wouldn’t have unintended consequences: side-effects.

So there’s my answer: a definite maybe, if it’s not too much trouble and it wouldn’t do anything I didn’t want it to. I’ll take help if it’s going, I might consider limited treatments, but I would never want to not be autistic. I don’t want to be “cured” because although I accept that I’m disabled, I don’t see myself as broken.