Tag: Neurodiversity

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.

WTF is #Neurodiversity?

WTF is #Neurodiversity?

by alexforshaw ♥ 4 Comments
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

by alexforshaw ♥ 8 Comments

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.

Everyday Aspergers – Interview With Sam Craft

Everyday Aspergers – Interview With Sam Craft

by alexforshaw ♥ 6 Comments

Earlier today I interviewed autistic writer and artist Samantha Craft whose recently completed book, Everyday Aspergers, brings together her reflections and experiences of life on the Autism Spectrum.

Alex Forshaw To begin, your book grew from your blog posts on Everyday Asperger’s. What first inspired you to write about autism?

Samantha Craft My middle son, who is now 17, was diagnosed with Asperger’s Syndrome when he was 5 years of age. I’d learned a lot about Asperger’s through him and literature. When I started a second Masters Degree (which I didn’t finish) in Counseling, I was required to seek out a therapist as part of course work expectation. I asked the therapist I found if she thought I might have ASD. She was adamant that she thought so. From there, I had an abundance of emotions about the ideas of me being autistic, and needed a place to process what was going on inside my head.

AF I’m guessing that you suspected you had ASD based on what you saw in your son? Similarities between the two of you?

SC I’d always felt out of sorts, different from my peers and even from adults. I’d sought out answers for years from people in authority, such as therapists, priests, psychologists, teachers, and so forth. I didn’t know why I was the way I was. I didn’t connect the dots that I had Asperger’s when my son was diagnosed because very little was known then and what was shared was very stereotypical and didn’t make sense to me, such as: no empathy, no imagination, no creativity, etc. It took me a long time to connect the dots between my son and myself. He manifested his autistic traits differently as he was a child and a male and in a very stable home. In comparing our childhoods, there were a lot of environmental factors that influenced how I behaved. Similarities, now, are numerous and profound. Especially our need for time alone, limited expectation on others, keen interest in creative writing, deep philosophical thinking and discussion, ability to think outside of the box, and confusion over certain societal hierarchies and cultural standards. But these are not common things you find in an ordinary text book or article on ASD. These are things you find in real autistics leading real lives.

AF You mention the stereotypical nature of much of the literature about autism, and that it is removed from everyday life. Can you give me some examples where your book covers topics that you’d have found most helpful at that stage in your life?

SC Yes, and let me point out first, please, that I would add the word “falsehoods” or “false” to those stereotypes. I have corresponded with many people who are on the autism spectrum or believe themselves to be, and they are for the majority, let’s say 95%, extremely empathetic, kind, compassionate, passionate, insightful, and highly creative and imaginative. These stereotypes are largely based on the observation of autistics—largely on how others who don’t have autism think about autistics and not on the real voices of autistic people.

AF That’s a very good point.

SC It is hard to think of my book in “topics” as I don’t generally write that way. My blog was largely inspired by how I was feeling during that day, and what I felt needed to come out of me in order that I might be able to breathe. Typically I began writing my posts without knowing what I would say or even truly how I was feeling. The writing was my way of getting out my thoughts and ideas. Interestingly, at least a thousand people have written to me to say that I have read their minds. When in actuality, I tend to think they all jump in my head and I have to spill out what’s going on in there. Like a Jungian Collective Unconscious of Aspies swimming in my head. But back to your question, the whole book works as a whole. I cannot separate it into parts of most useful or least. For me, it depends on the given day, how I might be feeling, how I might have been triggered. It’s 150 posts ranging vastly in subject matter. Mostly, for me, it is about community and connecting. For others to be able to see their self in me and for me to continue to see myself in them. For others to know we are in this life and this journey together.

AF I find it interesting that the way you describe your writing sounds a lot like the way I write myself, with the act of writing itself being the catalyst that teases the thoughts into some kind of shape.

You say you see your book working as a whole, and that it is about others seeing themselves in what you have written about your own life and experiences. I know that my big “Aha!” moment was on reading some posts on a blog and realizing that the author could have been talking about my own life.

SC Yes, what you said; that’s it exactly. The act of writing itself is a catalyst. I often just type what I hear in my head. I can hear a still, calm peaceful voice whispering the words to type. It’s a very healing process. I am glad you had that Aha moment. I actually use that phrase “Aha!” in my book a couple times, at least. It’s amazing when we find a collective that understands us and sees us, especially after many of us have felt either entirely too visible in a way in which we were misrepresenting our own selves or misinterpreted by others, or entirely invisible, with thoughts of being isolated and misunderstood.

AF My own experience tells me what other autistic readers can get from your book, but how do people who are not on the spectrum respond, and what can they gain from reading it?

SC I like to say, or rather giggle when I say, “Most of my best friends are neurotypical.” And that’s the truth. I have been fortunate to know some very kind people in my life, especially in the field of teaching. I tend to keep my friends for life, if they’ll have me. Since I have some friends that are not autistic some read my writings. A few I sent my completed manuscript to. And their feedback has been that they feel a lot of what I feel. The primary difference being that I tend to experience life “turned up” or on heightened degree—I mean everything about life, from my thoughts, ideas, emotions, theories, and so forth. So, for the people reading my works that perhaps are not autistic, I would say I write in a way that is accepting of all my self, all my emotions and experiences, and in a manner that invites others to look at their own self and heart. In that, the book could easily be called “Everyday Human,” not just “Everyday Aspergers.” This is not to say that autism isn’t challenging, because clearly being autistic is very hard at times, but it is to say that I, as an autistic, have much in common with others that might not be neurodiverse. Also, interestingly enough, there have been quite a few folks, including some relatives, who ended up discovering they were likely autistic from reading my works, having not ever given it thought before or even known enough to give it thought.

I would add, too, that there are of course other major differences between my non-autistic friends and me, including the constant voice in my head monitoring social interactions, sensory challenges with all my senses, difficulty processing my emotions until time has passed, much stimming, high anxiety, and I could likely list 100 other things as well. Still, there is enough of me that is essentially human in the book that speaks to the human experience.

AF I love that response. Yes, I think it can be very easy sometimes to become so immersed in autistic culture that we forget we have more in common with neurotypical people than we realize. Though our differences, being autistic, are significant enough to affect how we experience life, we are all human and that should count for more than our differences.

Before I wrap this up, I’d like to say that one blog post of yours that I will always remember was your list of Asperger’s traits for women and girls. I particularly enjoyed the way you didn’t just present a checklist of attributes, but instead gave in-depth descriptions of living with those traits. I find your approach very accessible because it’s much easier to draw parallels with my own life when reading how it feels and the effects it has day-to-day.

SC I am pleased to hear you appreciated the Ten Traits post. That is the post that brought 1000s of us (meaning those of us who are autistic and those who support an autistic loved one) together. I recently did a YouTube reciting that post because after four years and with the coming of the book, I wished to put my tone and inflection to the words, to bring it even more life. Thank you for the kind words about my approach. I try to release all expectations, and thoughts of future, when I write. I write to write. I have a faith. I hesitate to say strong, as it wavers, that is uniquely mine and that I don’t ever intend to push on anyone, but this faith, my connectedness to source, helps me to write in a form that feels free of judgment, strong opinions, or want of anything. There is a definite freedom in my writing that others have reported, and I believe, allows for a person to be as they are without expectation of change.

AF Speaking of autism in females, do you think that we need stronger focus on how it affects women and girls differently?

SC In answer to your question, you likely know that answer.

I believe a wave has begun of autistic teachers, activists, advocates, authors, artists, professionals, and leaders and with this wave is a secondary wave of neurodiverse supporters who don’t necessarily identify with being autistic. I believe this wave will continue to build and in doing so bring increased awareness to the autism community and the neurodiverse community at large. This wave will bring to light many of our struggles, those of the autistic community, but also of the struggles of living life on this earth. It will bring connection, community, support, and a sense of purpose. It will encourage service and acceptance of differences.

This wave will naturally in its current expose the world to the autistic nature of an autistic individual. I no longer think it is about gender. As the false stereotypical traits are being eradicated by the true voices of autistics and we are seeing whether male, female, or an individual who doesn’t identify with a gender, we are alike in the way we experience autism; and in the same way we are also uniquely individualized.

I do understand what you mean by differently, with aspects to genetics and social expectations, and how girls naturally try to fit in, but in my experience, most of the men I speak with identify almost entirely to my female traits list.

AF Well put. I see this comes back to the principles of accepting differences while celebrating all that we have in common, building communities on those strong foundations. After all we are all stronger together.

Thank you very much for your time.

Everyday Aspergers by Samantha Craft is due to be released in June 2016. Please visit her website Spectrum Suite to find out more about her, her book, and a range of autism-related resources, events and links.

What Is Empathy?

What Is Empathy?

by alexforshaw ♥ 8 Comments

Empathy. Everyone knows what it is, right? It’s that sixth sense, a kind of ESP that picks up the vibes of what somebody else is feeling. Except that telepathy doesn’t exist, and given the lack of Betazoids on Earth there is nobody who can genuinely “hear” emotions broadcast by your brain.

So what is empathy and how does it work? It turns out that it’s based on observation. Minutiae of expression–body language–signal emotions at a subconscious level.

Humans being social animals, we have evolved to be sensitive to these signals from others around us. They provide hints for how we should approach others, how we should adapt our behavior to their moods so that they will be more receptive to our interactions.

But since we cannot actually read the thoughts of another, cannot infallibly know what they are thinking, we rely on projecting what we can observe onto our own psyche. We predict their responses based on what we ourselves would do in their situation.

There’s an elephant in the room of this analysis of empathy: it relies completely on an assumed similarity of thought. To be able to mirror the thought processes and mind state of another person requires a certain degree of equivalence of culture, environment and neurology.

Among the mostly homogeneous communities around the world this works well enough for the majority of people that they take its universal applicability for granted. But that is not the case.

Those of us who have a different neurology, or were raised in different culture, think differently. When we try to imagine another’s thoughts we predict them based on our own minds. We use the knowledge we have gained through our own experiences.

But, when those experiences are sufficiently different from those of the person whose mind we are trying to model we find that the conclusions we reach are different from those that they would arrive at.

The converse is also true: neurotypical people are equally bad at imagining what autistic people (and also people from different cultures) are thinking and feeling.

Empathy is not some magical ability. It is nothing more than considering the question, “What would I do/feel in their situation?” It’s simply a forecast based on what we can see of them.

For accuracy forecasting relies on both knowledge of the initial conditions (what we observe of their situation and mood) and an accurate model of their behavior (how they think). It is this second part that explains the disconnect for autistic people.

We simply do not think in the same way. We respond differently to the same stimuli. And so when we try to imagine their thoughts we imagine them responding as we would. And that is different to how they would respond.

The result is that we are assumed not to have any significant capacity for empathy, for putting ourselves in the place of others. But my view is that the very definition of empathy means the odds are stacked against us even before we begin.

Changing Your Mind – Thoughts on TMS

Changing Your Mind – Thoughts on TMS

by alexforshaw ♥ 14 Comments

Over the past year, and especially since the publication of Switched On by John Elder Robison, there has been a lot of attention around a therapy called TMS (or rTMS–Repetitive Transcranial Stimulation).

It’s something I have deep reservations about but others have written passionately and eloquently on the subject. What I want to consider is why somebody would choose to undergo such a therapy that literally changes their mind.

I’m no stranger to the negative feelings that arise when considering the gap between how I perceive myself and what I see when I look in the mirror: that’s a big factor in my gender dysphoria.

I also know first-hand how it feels to be teased and ridiculed for hand flapping, physical clumsiness, social awkwardness, unusual speech patterns and eclectic interests. I’ve had life-long difficulty making and maintaining interpersonal relationships, and I have times where I feel keenly the lack of people with whom I feel comfortable opening up about my problems and feelings.

I understand the drive to make physical changes to one’s body. After all, I’m in the process of seeking treatment to modify my own body, bringing it into closer alignment with what I see in my mind by erasing or concealing male characteristics and developing female ones.

There are two parts to my gender dysphoria. First there is my need to have other people respond to me as a woman, reinforcing my gender identity. Second there is my need to see my own body physically match the mental image I hold.

So as a trans woman I am actively seeking treatment to make changes to my body. This is in contrast to my feelings about my autism. Both my gender identity and my autistic identity go to the very heart of who I am.

The thing is, although I will happily modify the physical characteristics of my body I wouldn’t consider altering my mind. My neurology is inextricably tied to my identity: I feel that changing my mind would make me into a different person.

There’s a line there. I’ve put a foot over that line a few times, testing the water so to speak. I’ve experienced the effects of drugs that affect the workings of the brain: alcohol, marijuana, amphetamines, SSRIs (anti-depressant).

Some of them have positive aspects. For example, alcohol reduces my social anxiety. But there are negatives too: I make poor decisions under the influence of alcohol because it inhibits my self-control and risk-aversion: I’ve gotten myself into some dangerous situations as a result.

Speed (amphetamine) left me unable to concentrate, marijuana was relaxing but caused mild hallucinations and a degree of paranoia. The SSRIs reduced the intensity of my emotions, leaving me feeling numb: in the end I had trouble focusing and engaging with things in my life.

These were all temporary effects: my mind returned to its usual functioning state in time for which I was grateful. You see, I wasn’t myself when under the influence of any of these drugs.

I guess my point is that given the complexity of the human brain and the way its many regions interact it is not possible to adjust one aspect without affecting others. Just as a particular drug affects a small number of electro-chemical interactions in the brain with wider-reaching side-effects, so a therapy like rTMS that alters a small region must cause knock-on changes across the entire organ.

My opinion is that it is not like tuning an engine, a relatively simple system with a limited degree of interconnection and feedback between its components. It’s more like introducing a foreign species into an existing ecosystem. The effects can be slow to manifest, and predictions are error-prone due to the complexity and chaotic nature of the system.

There is no way to know what other effects rTMS would have. It might reduce my social anxiety, but even if that was all it did it would make me respond differently to people I interact with (like alcohol). And if my thoughts and behavior are changed then I’m no longer the same person.

I don’t want to change who I am: I’m comfortable with my identity as an autistic trans woman with all that entails. Changing my body doesn’t affect my personality, my thoughts: I remain me. Changing my mind makes me into somebody else. I would lose the essence of what makes me this particular unique individual, and the thought of that fills me with dread.

This leads me to suppose that for somebody to even contemplate such a thing they must not like who they are. Internalized self-hatred, blaming their neurology for what they see as their failings. It’s like body dysmorphia projected onto the ego, the sense of self. The antithesis of neurodiversity’s principles; an inability or refusal to accept one’s differences.

I see this as a result of thinking colored by the medical model of autism that sees it in terms of pathological deficits, as opposed to the social model which instead looks to society’s failures to provide suitable accommodations and acceptance as the causes of disability.

There’s nothing wrong with my mind: I have no reason to change it. I can’t say the same for the society I live in.