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 long ago I started spending time in a new community. It began with ADHD and then widened out into the “conditions and disorders” that are rooted in neurology. In that neurodivergent world there were so many letters and so many words. Two years on, I feel as though I have only just got a grip on most of the language, and some of it still escapes me. It leaves me deeply annoyed and confused on several levels, and because I care about this community, I think we need to look hard at how we talk about it.

What I want to do here is clarify a few terms, analyse some of the language in use, and touch on why changing it matters. Before anything else: I am not trying to take away anyone's right to identify with whatever words they choose. It is always a matter of individual choice, and I don't want anyone to read this as a criticism of their choice. I do think it helps to have all of the issues out in the open, so that the choice is an informed one.

What is neurodiversity

Neurodiversity describes the whole range of difference that exists in how human brains work. That includes the ordinary variations of typical neurology and all the variations of divergent neurology, the ones that sit outside the norm. No two people are alike, and that variation is part of why humans survive.

So there are two broad groups. The neurotypical, who are most people, and the neurodivergent, whose brains work differently from most. Neurodivergent people behave differently from what is considered normal, and the differences vary enormously. ND people usually end up labelled with one or more “conditions”, which attempt to sort the things they struggle with into categories.

One thing to get straight: a person cannot be “neurodiverse”. A group of people can. Saying an individual is neurodiverse is like saying an individual is racially diverse. If someone's neurology is not typical, they are neurodivergent.

What causes neurodivergences

Evolution. Biology. Epigenetics. Simple.

Why raise this in a piece about language? Because it shapes how we talk about neurodivergences.

The good, properly conducted research tells us that neurodivergences are part of our genetic make-up. External factors do not “cause” them. The more we learn about genetics, though, the clearer it becomes that the code for human development is not fixed at conception. There is no fate, as Terminator 2 puts it. Genes express themselves differently depending on environment, which means some limited external factors can influence how a brain develops and functions, by influencing how genes express. It does not mean we can cause autism, or prevent it. Any claim that vaccines, gut bacteria, diet, allergies, retained reflexes or parenting can cause or prevent neurodivergence has been shown, scientifically, to be false.

A few things worth holding on to:

• neurodivergent people display human traits and needs in a more extreme form
• neurodivergences take many shapes; no two ND people are the same
• not every neurodivergent person experiences any disability from their differences
• the best research shows neurodivergences are a natural variation, not a pathology
• being neurodivergent in this society can, and often does, produce co-occurring conditions such as mental illness and psychiatric conditions
• some ND people have developmental and learning differences as well
• like neurotypical people, ND people experience varying levels of ability and disability
• some ND people experience extreme disability

Social model versus medical model

People talk about seeing disability, or health, through the social model or the medical model. I dislike the idea that there are only two ways of looking at human beings. I dislike it even more that we are expected to reject the medical or scientific view in order to see people whole. It insults the people working in medicine and the people arguing for a holistic approach. You end up implying either that doctors treat people inhumanely or that activists want to deny science. I call bullshit.

The science is clear, and the people denying it while using language that dehumanises people with different abilities, disabilities or health conditions are the ones who need to change. The science tells us:

• some language is harmful and increases mental health problems and abuse
• how people think about themselves makes the biggest difference to their wellbeing
• autism and ADHD are both neurological differences caused by genetics
• those differences are often, though not always, accompanied by other difficulties

Calling something a “disorder”, which in this context means “an illness that disrupts normal physical or mental functions”, or a “condition”, which here means “an illness or other medical problem”, when you know perfectly well you are looking at a difference that does not always cause difficulty, is discrimination. It is as false as calling gay people ill, foreign people savages, or blonde people stupid. That is not the medical model. It is simply wrong. Some gay people are ill; describing all of them as ill is prejudice. The same applies here.

Let's look at some more language issues

Here I want to pick out a few more problems with the language that circulates around neurodiversity. I could write a long article on each of these, and probably will, but for now I will touch on them briefly, to show how tangled this gets and how widespread the difficulty is.

Attention Deficit (Hyperactivity) Disorder. Where to begin. We can leave disorder aside, since I have covered it above. Whether hyperactivity is in the name or out of it confuses parents and anyone else dealing with ADHD. The manual now always includes it, then defines subtypes: predominantly inattentive, predominantly hyperactive, or mixed. I am not sure that is any clearer. Hyperactivity is a word that gets badly misread, and its role in this neurotype may have been misunderstood by professionals for years. Hyperactivity can mean racing thoughts, fast and continuous speech, or something more physical. A great many women are dismissed because the word does not describe their experience, and plenty of professionals don't understand that either.

More importantly, the name was wrong from the start. People with ADHD do not have a deficit of attention. They don't. What they have is difficulty, or perhaps a difference, in regulating attention and other cognitive processes: impulsivity, energy, emotion. Naming it a disorder of attention causes misunderstanding and stigma, and it is dangerous. Assumptions get made about people with ADHD because of the words used and because of how the media portrays it. That has to change, though I accept that until it does, we are stuck with the name. It may be the worst of them.

Autism Spectrum. Autism means “isolated in the self”, and the word was first used in 1911. I have no problem with the word itself. It has become something I identify with, and I know others feel the same. That said, we do not have to avoid the issues. When many people think of an autistic person they picture one particular presentation, and the assumptions that follow do damage in both directions: people who don't fit the picture are assumed not to need support, and people who do fit it get underestimated. Autistic people are also not “isolated in themselves”, so the word is not especially accurate anyway.

The spectrum part was added to convey that autism looks different in different people, which is a good thing. But people thoroughly misunderstand what a spectrum is, and it has generated endless talk about “severity”. They think a spectrum is a scale running from severe autism to normal, which is how you get the claim that “everyone is a little autistic”. That is utterly false, and it is damaging, because it denies the real struggles of people on the spectrum and reduces them to quirky personality traits.

What is meant by a “spectrum of conditions” is also unclear, including to me, to some extent. Even the National Autistic Society is vague about it, and their description does not line up with the diagnostic manuals. They list PDA and Asperger's as two spectrum conditions, and neither is officially recognised in the manuals. Asperger's has been removed. PDA has not yet been recognised. If those two are spectrum conditions, and there are clearly autistic people who fit neither by anyone's definition, what are the other conditions? They also say that “classic autism” and “Kanner's autism” are widely disliked terms. Is everyone else just “autistic”? I genuinely don't follow. All of this creates enormous confusion, both inside the community and outside it. It breeds resentment, the feeling that specific “conditions” such as PDA are diluting autism and should just call themselves autistic. And it pushes people to find other language for different profiles, which is how we end up with functioning labels. More on those below.

Pathological Demand Avoidance. A few problems here. Some people object strongly to pathological, because it implies illness, disease or brokenness, and it has enough definitions to carry all three. My reading is that it was meant to say the demand avoidance in question is atypical and extreme compared with other demand avoidance. I can see the concern, though. The bigger issue, and the one that matters to me, is that the neurotype is named after one behaviour within it. We do experience a pathological form of demand avoidance, and more typical forms exist. But that is one aspect of a profile driven by something else. Naming the whole thing after it stigmatises that behaviour and trivialises the rest of the traits, limits how well people can understand the experience, and ignores the actual driving force behind it. I know most PDAers have grown fond of the acronym, and I feel the same up to a point, so I suggest Pervasive Drive for Autonomy — though what I would really prefer is a much wider change of language across neurodiversity.

Asperger's syndrome. Asperger's is named after its discoverer, a Nazi eugenics specialist. That alone has led many people to feel deep discomfort with the term. He was studying something he had noticed while looking for autistic people to imprison in the camps. What he saw was a group of boys who showed clearly autistic behaviour but had ordinary language development and intelligence. He judged them useful and set out to exploit them. Later the manuals defined it as a separate condition from autism, though most professionals had long described it as a “high functioning” or “mild” form. The most recent manuals have removed it and folded it into the umbrella diagnosis of autism spectrum conditions. Mild autism, and functioning labels generally, are dealt with below, but it matters here that many people still use Asperger's, or Aspie, to identify themselves, and find it separates them from the stigma attached to autism. Others argue that using it increases the stigma around autism and splits the community.

High and low functioning. Functioning labels grow out of all of the above and out of a growing awareness of how vast this spectrum is. They have divided the community completely and loaded more stigma onto autism than was there before. The problems go well beyond sorting people into high and low, damaging as that is on its own.

Call an autistic person “high functioning” and what you usually mean is that they can hide their autistic self very well. That is not a kindness to them. Being trained to fit a neurotypical version of yourself, or trying to, is exhausting; it produces mental health problems, and trauma. The label also denies the person's struggles, simply because they can do something like make eye contact, hold down a family, or do a bit of work. Somebody who manages all of that but needs financial support because their career has huge gaps, or is often too unwell to work, or relies on their children as carers, or needs someone else to run their admin, probably does not feel “high functioning”. Is a child high functioning because they can go to a coding club, when they could not cope with school and it made them suicidal?

None of which denies that some autistic people need round-the-clock care and others do not, exactly as neurotypical people vary. I am not pretending the experience of autism is the same for everyone. The trouble is that functioning labels also hurt people who are more severely disabled by their neurology. Calling a human being “low functioning” dehumanises them, and it gives the people around them an excuse to withhold the services that could support growth, independence and autonomy.

Nobody's ability to function stays still. Everyone develops and grows, in small ways and large, right through life, and everyone needs appropriate support to do it. Equally, the fact that someone could work last week does not mean they can this week, and that goes double for neurodivergent people.

Disability. I have no problem with the word disability. It is an important legal term, and a way of naming a protected group of people who need accommodation and support to function in our society. It matters, though, to know that not everyone who is neurodivergent is disabled. It also is not always obvious whether someone is or is not. Autistic people often do not appear disabled, which tells you nothing about whether they are. Hidden disability is a huge issue, and awareness needs to grow. So does awareness that neurodivergent people may struggle with parts of life while excelling, far beyond neurotypical people, in other parts and in the right environment. Without neurodivergent people, a great many of society's most exciting advances would never have happened.

Difficulty. There is a temptation to swap disorder or disability for “difficulty” and consider the job done. I can see the thinking, and for some people it is less loaded and less offensive. Sensory Processing Difficulties rather than Sensory Processing Disorder; Specific Learning Difficulties rather than Learning Disabilities. But it brings complications. People with dyslexia, dyspraxia, dyscalculia and dysgraphia are not unable to learn in that area. They learn differently there, and not in the way neurotypical people do. They need extra support because our schools, and our society, teach in one way. That does not take away from the fact that learning can be harder for them, or that they may not excel in that area. But slapping disorder, disability or difficulty on all of it makes people believe they cannot, and that is a disaster.

There are many more words I could take apart, but I have to stop somewhere. What I want is for people to look much more closely at the language they, and the people around them, use in this area. Read something and take a mental note of every negative word being used to describe real humans and their experience of being alive. Language matters enormously, and it lands on people's lives in a real way. Words get 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 now a growing number of voices have been arguing for a new structure, new language and more respect for this community. They have been labelled “the neurodiversity movement”, and are treated as supporters of the social model of disability. My argument is that we are simply asking to be recognised properly as a group of human beings. There are a few obstacles in the way of getting the change we are after.

The first is that, as a minority group, the voices of the people directly affected by neurological difference get silenced. Often they are silenced by the people closest to us, family and professionals, who feel their own voices carry more weight because their lives are affected by our existence, or because they know better. Autism and ADHD being wrongly treated as childhood problems makes it worse, and that is where discrimination against disabled people meets discrimination against children, which is one of the deepest prejudices in our society. Autistic people are treated as doubly incapable of having an opinion, and the opinions of neurotypical parents, professionals and officials get prioritised, even with good science in front of them.

The other common objection is that all this ignores the experience of “low functioning autistics” — that is, autistic people with severe disability. It simply is not true. The people arguing for these changes have the whole community in mind. We speak for autistic people who cannot speak for themselves, often because we share the closest experience of living this way, and so are best placed to do it. The point of changing how neurodivergence is discussed is to humanise their experience, not to deny it. Nobody is suggesting the word disabled should be removed from neurodivergent conversations. That would be insane. We want to advocate for the whole group.

My research looks at neurodivergences in the hope of building better language for everyone. I believe that changing how we talk about this, deliberately and at scale, will improve services, reduce stigma, create acceptance and improve all our lives.

There is a glossary of terms below.

Glossary of general scientific terms

Neurology

How your brain works, given its neurological pathways and the neurotransmitters it is built from.

Diversity

The full range of difference that can occur.

Neurodiversity

The full range of differences in the way human brains function.

Neurotypical

Someone whose brain works in a way similar to most people, within the typical range.

Neurodivergent

Someone whose brain works significantly differently from most people, outside the typical range.

Neurodivergences

A catch-all term for all the ways a person's neurology can differ from the typical.

Neurotype

A profile describing a set of strengths, support needs and frequently associated behaviours that tend to appear together.

Common traits

ND people share several families of traits. They show up differently in each person, but the themes repeat: 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 brings significant differences in social communication and interaction, repetitive behaviour and restricted interests. Autism Spectrum Condition or Disorder (ASC/ASD) are also in common use. See above for the arguments about these terms.

Aspergers

A term that has been withdrawn, once used for a particular profile or neurotype on the autism spectrum. Many people still identify strongly with it, even though it is no longer in official use.

PDA

Pathological Demand Avoidance (PDA) is the current term for a profile, or neurotype, characterised by an intense and pervasive need for personal freedom and self-determination. Many professionals now accept it 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 attention, impulsivity and energy are regulated differently. It comes from a genetic difference in how the brain produces neurotransmitters.

OCD

Obsessive compulsive disorder is an anxiety disorder in which people have recurring, unwanted thoughts, ideas or sensations — obsessions — that drive them to do something repeatedly, which are the compulsions.

SLDs

Specific learning difficulties is an umbrella term covering dyslexia, dyspraxia, dysgraphia and dyscalculia. Each describes a particular set of differences in how the brain learns in one area: reading, writing, maths, or coordination and balance.

SPD

Sensory processing disorder describes people whose brains interpret sensory input differently, who therefore often struggle or behave in ways that look unusual, avoiding sensory experience or seeking it to an extreme degree. In theory the diagnosis only applies where other neurodivergent profiles do not fit, since almost every neurodivergent neurotype includes differences in sensory regulation.

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”; “a failing or shortcoming”; “the amount by which something, especially revenue, falls short; a deficit”

Difficulty

The definition that matters 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 meant to say “structural and functional deviations from normal”, or “a deviation from an assumed normal state”. Because it can also mean “diseased” and “malfunction”, it can be read as an insult.

Function

“To work or operate in the way it is expected to”