An element of becoming part of the neurodivergent community is recognising how rubbish society is, in general, at using appropriate language and terminology. Using neurodivergent and neurodiverse interchangeably. Tending to use person-first language. Confusing “support needs” with “severity”. Most of the time it is not done with malice. Often the mistakes are even made with active good intentions – in most disability fields, person-first language is preferred, for example. I made many of these errors myself before I knew better!
Over the course of the past week, I’ve had multiple people ask me for clarification on terminology in different contexts. As the scope of neurodivergence is so broad, it is impossible for me to cover all aspects of accurate, appropriate, and inclusive language. But here are a few of the big ones that people frequently get wrong…
Neurodivergence vs Neurodiversity
Neurodiverse
is an adjective, referring to the wide variety of neurotypes, including neurotypical brains. Society is neurodiverse. Most workplaces are neurodiverse. Some families are neurodiverse. Neurodiversity is simply the acknowledgement that there are a number of ways of thinking and processing information.
Neurodivergent
is an adjective that describes an individual person whose brain does not fall under the umbrella of neurotypicality. A person can be either neurotypical, or neurodivergent.
Use of Each
An individual person cannot be neurodiverse, though they can be multiply-neurodivergent (AuDHD, ADHD and dyslexia, apraxia and epilepsy, etc).
A group of neurodivergent people can be neurodivergent and neurodiverse. This could be a family where not all members have the same neurotype or combination of neurotypes.
Neurodivergent does not mean autistic. Autistic people are neurodivergent, but not all neurodivergent people are autistic. If a person is not autistic, they are allistic. As such, a person can be neurotypical and allistic, neurodivergent and allistic, or neurodivergent and autistic.
A Touch of the ‘Tism?
One of the greatest complications around language when talking about autism is that it’s a rapidly changing field.
The term “Asperger’s Syndrome” used to describe an autistic person with a particular set of traits and low support needs. It has been increasingly seen as inappropriate since being scrapped by medical professionals in 2013. Many resources – even those purporting to be experts on autism – continue to use it; this is not okay, and it’s important that they are informed that it needs to be updated. However, some people confirmed as autistic prior to 2013 choose to use it to describe themselves. This is okay, absolutely, and it is not acceptable to correct them or feel it is your right or duty to educate them on how they would be described by current standards. So while you might hear an autistic adult referring to themselves as “having Asperger’s”, it would still not be acceptable to include this in your own vocabulary.
Other terms that are not widely seen as acceptable in this area include “has autism”, ASD, Autism Spectrum Disorder, low- or high-functioning, discussion of cures or treatments, and negative phrasing such as “is at risk of” or “suffers from”.
A Disorder?
There is an additional level of complexity in that psychologists and paediatricians who confirm autism often use pathologising language that the community itself does not appreciate. A large number of autistic people don’t like being told that they have been “diagnosed”, as they aren’t unwell. The greatest difficulty here is that the confirmation process relies on the fact that autism exists in the DSM-V, which is literally a collation of mental health disorders. To be formally confirmed (which is required to receive many supports), we must be “diagnosed”. Ick. Just because a psychologist says your child “has Autism Spectrum Disorder Level 3” does not mean you need to, or ought to, adopt this language. It would be significantly more enabling, empowering, and neuroaffirming to say they are an autistic person with high/significant/many support needs.
But What if an Autistic Person Does?
There are also varying degrees of sensitivity over the use of correct terms. Much like some people require political correctness as a form of respect, others blatantly choose to counter it for humour or reappropriation.
For example, “Autism Spectrum Disorder” is not widely embraced by the autistic community (as there is a resistance to the label of Disorder), and saying someone is “on the spectrum” is generally offensive. Yet some autistic people will choose to say they’re “on the spectrum” or jokingly ask if a friend is.
Similarly, it is widely accepted that, while support needs vary greatly within the spectrum of autism, a person cannot be very autistic, or a little bit autistic, etc. However, the phrase “a touch of the ‘tism” is often jokingly used when an autistic person observes an autistic trait in another person, or is making light of something they’ve done themselves.
Identity-first or Person-First Language
This one is another minefield, particularly applied across the breadth of neurodivergence.
You may have noticed that I never write “a person with autism” or that someone I’m speaking about “has autism”. (If you ever see this on More Than Quirky, please tell me!)
There are two primary ways to describe someone with a disability, disorder, or difference; person-first, or identity-first.
Person-first…
…language was not initially used but was widely encouraged as politically correct, particularly throughout the 1990s. This involves putting the person first, with the belief that this empowers them by not labelling them as their disability/difference. For example, “a person with dementia”, not “a demented person” or “a dementia patient”.
This is still the preferred approach in most areas. It is the best approach if you’re unsure – provided you’re open to listening without justification or defence if you’re corrected by someone it applies to. If you said, “Because you’re a person with a disability…” and the person you’re referring to corrects you with, “Disabled person,” then that’s what they prefer, and that’s what you should use.
It is still crucial, however, not to use negative language. Even when using person-first language, a person who uses a wheelchair is not “a person confined to a wheelchair”, a person with epilepsy is not “a person suffering from epilepsy”, etc.
Identity-first…
…language has been adopted by both communities and individuals, who perceive their difference/disability/disorder as an integral part of who they are. The Deaf community (big-D Deaf, not little-d- deaf) almost always prefer to be individually referred to as a Deaf person. The vast majority of autistic people like to be referred to as such, not as “a person with autism”. If you are parenting an autistic person, I cannot stress enough how important it is for you to adopt this neuroaffirming and community-embraced approach. But you shouldn’t refer to someone with substance abuse issues as an addict unless they tell you to. A person who uses a wheelchair is just that, unless they prefer being called a wheelie. Etc.
These approaches cannot be applied generically to neurodivergent people, even taking into account individual differences. There are many things within neurodivergence that are experienced as disabilities, many that are experienced as disorders, some that are both, and even some that are neither!
If you’re not sure whether to use person-first or identity-first language… Because you don’t know how someone feels about their own identity. Because you don’t know if they feel they are part of a relevant community. Or because you don’t know if the specific term technically has a community… use person-first language, or ask! The same way if you’re unsure of someone’s gender-identity you can use gender neutral, or ask their, pronouns. Being politely and kindness curious is a wonderful thing, not an admission of ignorance.
Disorder, Disability, or Disinterested in either!
I won’t go into great detail here, but it is important to be aware that while some neurodivergent people do not see themselves as having a disorder, they might still perceive it as a disability. This is often due to the neuronormativity in our current society which others many neurodivergent people, and does not accommodate for their needs or differences. Sometimes it is due to the personal experience of the individual who finds their own behaviours or feelings upsetting.
It is not okay, however, to assume that a neurodivergent person believes they have a disability or a disorder. Many simply feel they have a neurotype that is not the majority. This is not to be negatively labelled, much like it would be hugely offensive to consider someone who isn’t Asian (in terms racialised classification) as having a disorder!
A further complication is people who do not consider their neurodivergence to be a disorder or a disability, but who attest to one or the other in order to access necessary support. By doing so, they are not throwing away their right to expect others to refer to them – or not, as it may be – the way they indentify/prefer.
It is important to remember disability is not synonymous with notions of lacking, charity or pity.
Nor do disabled people need to be fixed through interventions. Rather, disability is part of the human experience.
Moving away from derogatory terms, such as “special” and “exceptional” is important. This promotes positive representation for people within the disability community, and respects their human rights.
Human rights perspectives stress that our society recognizes and names disability as the consequence of a person interacting with an environment that does not accommodate their differences.
This lack of accommodation impedes participation in society. Inequality is due to the inability of society to eliminate barriers challenging persons with disabilities.
https://theconversation.com/what-exactly-is-neurodiversity-using-accurate-language-about-disability-matters-in-schools-193195
NB: If there is anything in this article (or any other!) that you feel is inaccurate, or does not accurately reflect the beliefs of the people it represents, please do not hesitate to contact me! Always open to be educated further; my own experiences and beliefs are not paramount!