The language of neurodiversity – an analysis

Autism, Spectrum disorders, conditions, disability, Aspergers, dyslexia, dyspraxia, dyscalculia, difficulty, deficiency, neurodiversity, neurodivergence, Neurodivergent, neurotype,  neurology,  ADHD, ASD, ASC, OCD, SPD, SLD, PDA, pathological.

Not that long ago I started interacting with a new community. It started with ADHD and moved on to looking more widely at “conditions and disorders” that are based in neurology. In the “neurodivergent” community, there were so many letters and so many words and to be honest, two years later I feel like I have just started to grasp most of the language, and some of it still evades me. It drives me to a place of deep annoyance and confusion on so many levels, and in loving this community, I recognise that we need to address how we talk about this.
In this article I hope to clarify some of the terms, analyse some of the language used, and just touch on how important it is that we start to change the language in this area. Please first note that I do not seek to negate any individual person’s right to identify with whatever language or term they choose. It is always about individual choice and I do not want anyone to feel I am criticising their choice. I believe it is super important for all the issues to be out in the open so they can inform your choice.

What is neurodiversity

The term “neurodiversity” describes the whole range of diversity (differences) that occur in the neurology (functioning of the brain) of humans. This includes all the variations of more typical neurology, and all the variations of more divergent (different from the norm) neurology. No two people are the same and human variation is key to survival.

I have described above, two distinct groups of people: the neurotypcial (most people) and the neurodivergent (people whose brains function differently than most). Neurodivergent (ND) people will act differently to what most people consider to be “normal” in some hugely varying ways. ND people are often labelled with one or more “conditions” that attempt to describe the things they most commonly struggle with in categories.

​Please note that a person cannot themselves be “neurodiverse” but a group of people can. that would be like saying a person is racially diverse. If a person’s neurology is not typical, they are neurodivergent.

What causes neurodivergences

Evolution. Biology. Epigenetics. Simple.

​Why am I mentioning this here, in a post about language? Because it is an important factor to how we discuss neurodivergences.

All the well designed and scientifically appropriate research tells us that neurodivergences are part of our genetic make-up. They are not “caused” by external factors. However, the more we learn about genetics, the more we understand that the code for human development and expression within our genes is not fixed at conception. There is no fate (as Terminator 2 tells us). Genes can express themselves differently dependent on environment. So this means that some limited external factors can influence how a brain develops and functions by influencing the expression of genetics. This does not mean that we can “cause Autism” or prevent it. Any suggestion that (for example) vaccines, gut bacteria, diet, allergies, retained reflexes or parenting can either cause or prevent neurodivergence have been shown scientifically to be false.

Some facts that are important to note here:

  • Neurodivergent (ND) people display human traits and needs in a more extreme way.
  • Neurodivergences take many different forms – no two ND people are the same
  • Not all neurodivergent people experience any form of disability from their differences
  • The most advanced scientific research and analysis shows that neurodivergences are a natural variation and not a pathology.
  • Being neurodivergent in this society can (and often does) cause co-occurring conditions such as mental illness, and psychiatric conditions.
  • Some ND people also have developmental and learning differences.
  • Like with neurotypical (NT) people, ND people experience varied levels of ability/disability
  • Some ND people experience extreme disability.

Social model versus medical model

People often talk of either looking at disability or health through the social model or the medical model.  I really dislike the idea that there are two conceivable ways that we could look at people. I really dislike that we need to reject the “medical” or scientific ideas in order to look at people wholly. It is insulting to people in medicine and to people championing a holistic approach. You either imply doctors are treating people inhumanely or that activists want to deny science. I call bullshit.

The science is clear and those denying it and using language that de-humanises people with different abilities, disability, health conditions or anyone else, need to change. The science shows us that:

  • Using some language is harmful and increases mental health problems and abuse
  • How people think about themselves makes the most difference to their wellbeing
  • Both autism and ADHD are neurological differences caused by genetics
  • These differences are often, but not always, accompanied by other difficulties

Using the term “disorder”, which means in this context, “an illness that disrupts normal physical or mental functions”, or using the term “condition”, which in this instance means “an illness or other medical problem”, when you know that what you are seeing is a difference that does not always cause difficulty, is discrimination. It is just as false as calling gay people ill, foreign people savages, or blonde people stupid. It is not a medical model, it is wrong. Some gay people may be ill, but describing them all as this is just prejudice. This is the same with neurodivergences.

Let’s look at some more language issues

-Here I am going to highlight a few other issues with language that are common within the topic of neurodiversity. I could write extensive articles on each of these (and probably will at some point), but I am just going to touch on them briefly to show the complexities and the widespread difficulty we are all facing in the community.

Attention Deficit (Hyperactivity) Disorder (ADHD and ADD)
Well, where to flipping start with this. We will leave out disorder because it is covered above. The inclusion or exclusion of the word hyperactivity can be confusing for parents and for anyone interacting with ADHD. The manual now always includes it, then defines sub-types of the condition: predominantly inattentive, predominantly hyperactive or mixed. I am not sure if this is more or less confusing. It is especially difficult as Hyperactivity as a word can also be highly misconstrued and its involvement in this neurotype may have been misunderstood by professionals for many years. Hyperactivity can be racing thoughts, fast and continuous speech or more physical hyperactivity. Many females are discounted because the word does not describe their experience and many professionals do not understand this themselves.

Most importantly, this name in its conception is completely false. Why? Because people with ADHD do not have a deficit of attention. They don’t. Actually what they have is difficulty (or maybe a difference in) regulating their attention and other cognitive processes such as impulsivity, energy, and emotions. Using the name of this “disorder” causes misunderstanding, stigma and is dangerous. Assumptions are made about people with ADHD due to the language used and the portrayal of it in the media. This needs to change but I realise until it changes, we have to use this name. It may be the worst one.

Autism Spectrum (disorders/conditions)
The word autism means “isolated in the self” and it was first used in 1911. I don’t have an issue with the word per se, and it has become something I identify with and I know others do too. That being said, it doesn’t mean that we have to shy away from the issues. When many people think Autistic – they think of a certain presentation, and the assumptions made by that can be harmful for everyone. It makes people ignore people who do not present the way they expect as not needing support, and it makes people underestimate people too. Autistic people are also not “isolated in themselves” so it is not particularly accurate.

The spectrum part of this was added to try to help understanding that autism can look and be varying in how it presents. This is positive. However, people thoroughly misunderstand what a spectrum is and means, causing many more discussions of the “severity” of autism. People believe that a spectrum means a scale between severe autism and normal and therefore people are heard to claim that “everyone is a little autistic”, This is utterly false and is damaging as it denies the real struggles of people on the spectrum, trivialising them as funny personality traits.

Additionally, people, including me to an extent, are confused as to what is meant by a “Spectrum of conditions”, when the defined conditions they are referring to is not clear. Even The National Autistic Society is not clear about this and their description does not align with the diagnostic manuals. They list PDA and Aspergers as two spectrum conditions, both of which are not recognised officially in diagnostic manuals. Asperger’s syndrome has been removed and PDA has not yet been recognised. If these two conditions are named as spectrum conditions, and there are clearly Autistic people who fit neither of these conditions by anyone’s definition, what are the other conditions? They even state that “classic autism” or Kanner’s autism” are widely disliked terms. Is everyone else just “autistic”. I really genuinely don’t understand this. These issues lead to huge amounts of confusion for people in the community and people interacting with it. It leads to bad feeling that more specified “conditions” such as PDA are trying to dilute Autism, and should simply call themselves Autistic. It also makes it necessary for people to find other language to differentiate profiles of autism, often leading to the use of functioning labels which I will discuss below.

Pathological Demand Avoidance (Syndrome)
There are a few issues here. Some people object strongly to the use of the word pathological as it implies illness and disease or brokenness due to its many definitions. I believe in this case It was meant in the form of describing that the demand avoidance experienced is atypical and extreme in comparison with other demand avoidance. I can see people’s concerns though. The next issue, and the real one for me, is that this neurotype is named for one aspect of behaviour that is experienced. I do believe that we experience a pathological form of demand avoidance, where other more typical forms do exist. However, this is one aspect of the profile that is driven by another factor. This stigmatises that behaviour and trivialises the other behaviours and traits involved in the neurotype. It thoroughly limits peoples’ understanding of the experience, and ignores the actual driving force behind the PDA experience. I know most PDAers have become fond of the acronym PDA, and I feel similarly to an extent, so I suggest a change to Pervasive Drive for Autonomy, though I would prefer a wider change of language across neurodiversity in the future.

Asperger’s syndrome
Asperger’s syndrome was named for its discoverer, a Nazi eugenics specialist. This, in and of itself, has led many people to derive great discomfort from its use. He was studying a phenomenon he had observed whilst looking to identify autistic people for imprisonment in Nazi camps. The anomaly he saw was some boys who displayed distinctly autistic behaviours had normal language development and intelligence levels. He deemed them useful and sought to exploit them. Later, it was defined in diagnostic manuals as a separate condition from Autism, though most professionals have long described it as a “high functioning” or “mild” form of autism. The most recent manuals have removed it and consider it part of the umbrella diagnosis of Autism Spectrum Conditions. The idea of mild autism or any functioning labels is discussed below but it is important to mention here that many people use this term still or “Aspie” to identify themselves, and feel that this helps them differentiate themselves from the stigma of autism. Others argue the use of the term increases the stigma of autism and divides the community.

​High/low functioning
Functioning labels, derived from all of the above and from a much greater awareness of the vastness of the spectrum of neurodivergence, have utterly divided the community and imposed a greater degree of stigma around Autism to that which was present before. There are a number of issues with them, beyond dividing people into High and low functioning, which is damaging enough.

If you describe an autistic person as “high-functioning” what you are most often saying is, this person can hide their autistic self very well. This is not positive for that person. Being trained to, or trying to fit into, a neurotypical version of ones self is exhausting and leads to mental health issues, and even trauma. The label also utterly denies the struggles of the person, simply because they can, for instance, make eye contact, have a family, or do some work. If someone can do all of those things but also has to be financially supported because there have been huge gaps in their career, or they often are not well enough to work, or they sometimes rely on their children to be carers, because their mental health is not stable, or they need someone to manage all of their admin, they probably do not feel like they are “high functioning”. Is a child high-functioning because they can go to a coding club, but they could not cope with school and it made them suicidal?

On the flip side of this, this does not deny that some Autistic people need round the clock care and some do not (just like neurotypical people). I am not denying that the experience of autism is different for some people than others. Unfortunately, functioning labels also hurt people who are more severely disabled by their neurology. Calling a human “low functioning” dehumanises them, and makes the people around them deny them services that may support growth and some independence and autonomy. 

No ones ability to function is static. Everyone develops and grows, even in small ways throughout their life span, and needs to be given continuous support to do so that is appropriate for them. Equally, just because someone could work last week, does not mean that they can this week, especially if they are neurodivergent. 

​Disability
I actually have no issue with the term disability. it is an important legal term and a way of describing a protected group of people who need accommodation and support to function in our society. However, it is very important to know that not everyone who is neurodivergent is disabled. Equally, it is not always obvious whether anyone is, or is not, disabled. In many cases, autistic people do not appear disabled, but this has no relevance to whether or not they actually are disabled. Hidden disability is a huge issue in society and awareness needs to grow. It is also important to work on awareness in society that though neurodivergent people may struggle with some aspects of life, they can excel to a greater degree than neurotypicals in other areas and in the right environment. Without neurodivergent people, many of society’s most exciting advances would not have happened.

Difficulty
There is a temptation for people to change the word disorder or disability to “difficulty” and be done there. I can see the thinking and it is a less loaded and offensive term for some people. Think “Sensory Processing Difficulties” rather than Sensory Processing Disorder or “Specific Learning Difficulties” rather than Learning Disabilities. However, there are complications with this too. People with Dyslexia, Dyspraxia, Dyscalculia and dysgraphia, are not unable to learn in that area, they learn differently in that area, and not in the way that neurotypicals do. They need additional support because our school system (society) has one way of teaching. Now, this does not detract from the fact that this can make learning harder for them, and that they may not excel in that area, but the word disorder, disability or difficulty being used across the board, makes people believe they can’t, and that is a disaster. 

There are many more words I could discuss here but I need to stop somewhere, for now. All I really want is for people to look a lot more closely at the language that they, and others, are using in this area. I want you to read something and take mental note of all the negative words that are being used to describe real humans and their experience of life. Language matters so very much and impacts people’s lives in a real way. Words go into our brains and affect our mental health for decades. Words are used to punish and abuse us. Words are used to deny us human rights and services. 

The neurodiversity “movement”

For some years, there has been growing number of voices speaking out in favour of a new structure, new language and increased respect for the community. They have been labelled as “the neurodiversity movement” and are considered to be proponents of the social model of disability. I will argue that we are simply seeking proper recognition as a group of humans. There are a few difficulties we are facing in getting the change we seek.

Firstly, as a minority group, the voices of those directly affected by neurological differences are silenced. In this case they are often silenced by the people closest to us (family and professionals), because they feel their voices are more important because their lives are impacted by our existence or they know better. This is exacerbated by Autism and ADHD being perceived as a childhood problem (incorrectly), and therefore the discrimination of disabled people intersects here with discrimination against children, which is one of the greatest prejudices in our society. Autistic people are seen as doubly incompetent to have an opinion and the opinions of neurotypical parents, professionals and officials are prioritised, Even in the face of good science.

The other main argument against this change is that it ignores the experience of “low functioning autistics”, or to be clear, autistic people who experience severe disability. This is just simply untrue. The people proposing these changes do so with the whole community in mind. We speak for autistic people who cannot speak for themselves often because we have the closest shared experience of living and so are best placed to do so. The point of changing how neurodivergence is discussed is to humanise their experience, not deny it. No one is saying that the world disabled needs to be removed from neurodivergent conversations. That’s insane. We simply want to advocate for the whole group.

My research seeks to investigate and better understand neurodivergences with the hope of creating better language for the whole community. I believe that changing the way we talk about this, on a purposeful and wide scale, will improve services, reduce stigma, create acceptance and improve all our lives.

​Please find a glossary of terms below:


Glossary of general scientific terms

Neurology
The way your brain functions due to its neurological pathways and neurotransmitter make up.
Diversity
The whole range of difference that can occur.
Neurodiversity
The whole range of differences in the way people’s brains function.
Neurotypical
A person whose brain works in similar way to the majority of people
(within a range of typical).
Neurodivergent
A person whose brain works significantly differently from the majority of people (outside the range of typical).
Neurodivergences
A term that covers all the different ways a person’s neurology can differ from the typical.
Neurotype
A profile that describes a collection of strengths, support needs, and potentially subsequent behaviours that commonly occur together.
Common traits
ND people experience several sets of common traits, that display individually but have common themes. These include differences in sensory regulation, emotional regulation, and executive function.

Glossary of “conditions” or “DISORDERS” often considered as neurodivergences

Autism
The current term for anyone whose neurology includes significant differences with social communication and interaction, repetitive behaviours and restricted interests. Autism Spectrum Condition or Disorder (ASC/ASD) are also common terms for this. See above for discussion around these terms.
Aspergers
A term that has been removed that was used to describe a specific profile or neurotype on the Autism Spectrum. You can read more about Aspergers here. It is important to note that many people still identify strongly with this term even though it has been removed from official use.
PDA
Pathological Demand Avoidance (PDA) is the term currently used to describe a profile/neurotype of neurodivergence that features an intense and pervasive need for personal freedom and self-determination. It is currently accepted by many professionals as a profile of the Autism Spectrum. You can read more about PDA here.
ADHD
Attention Deficit (Hyperactivity) Disorder is the current term for a neurotype in which people regulate their attention, impulsivity, and energy differently. ADHD is caused by a genetic difference in the way the brain produces neurotransmitters.
OCD
Obsessive compulsive disorder is an anxiety disorder in which time people have recurring, unwanted thoughts, ideas or sensations (obsessions) that make them feel driven to do something repetitively (compulsions).
SLDs
Specific learning difficulties is an umbrella term for dyslexia, dyspraxia, dysgraphia and dyscalculia, all of which describe a specific set of differences in the way the brain learns in one particular area such as reading, writing, maths, or coordination and balance.  
SPD
Sensory processing disorder is a term used for people whose brains interpret   sensory input differently, and therefore often have difficulty or behave differently from normal, avoiding sensory experience or seeking sensory experience to an extreme degree. Diagnosis of SPD is in theory only relevant if other neurodivergent profiles are not also relevant, as almost all neurodivergent neurotypes include sensory regulation differences.

Glossary of general associated words

Condition
“an illness or other medical problem”
Syndrome
a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.”
Disorder
 “an illness that disrupts normal physical or mental functions”
Deficiency
“a lack or shortage” or “a failing or shortcoming” or “the amount by which something, especially revenue, falls short; a deficit”
Difficulty
The most relevant definitive form here is “a thing that is hard to accomplish, deal with, or understand”
Disability
“a physical or mental condition that limits a person’s movements, senses, or activities”
or
“a disadvantage or handicap, especially one imposed or recognized by the law”
Pathology
In the context of PDA it is designed to mean: “structural and functional deviations from normal” or “a deviation from an assumed normal state”. However, as it can also mean “diseased” and “malfunction”, its use can be taken negatively.
Function
“To work or operate in the way it is expected to”

By Emily Wilding Fackrell

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