Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher
Originally published as part of The Neurodiversity 101 LinkedIn Newsletter.
Words are powerful – be careful that the multicolored NEU(NEW) in NEU-rodiversity… doesn’t become bleached!
I mostly like the framing of neurodiversity as it starts with the premise that we are all different and promotes us considering how we vary in how we think, act, process information, communicate, hear, listen, and move and respecting this.
When it was first described as a term by Judy Singer in the late 1990s, I believe she thought of it as part of a social movement.
She says in her blog of 2021 “my intent was political, unifying and liberatory, not divisively intent on putting individuals “under a microscope” and goes on to say: ” The intention was to sound authoritative based on the combined heft of neuroscience and environmental science, not to be scientific.”
Increasingly the term is being bandied about along with terms such as neurodivergent and neurotypical and can see there is a risk it will become a dysphemism.
The reality is that over the years we have seen a range of terms used to try to describe people who diverge from the mean/average or who are different from what is perceived as the current social norm. The terms often used have ended up becoming pejorative.
We can look to early psychiatry, psychoanalysis, and philosophy to consider the views that society held about those with differences.
John Stuart Mill (1846) in ‘The principles of political economy’ was a famous and influential British philosopher of the nineteenth century. He said:
“It's hardly possible to overstate the value, in the present state of human improvement, of placing human beings in contact with other persons dissimilar to themselves, and with modes of thought and action unlike those with which they are familiar. Such communication has always been... one of the primary sources of progress.”
Words certainly change over time and their meanings.
We see some words going from the English language altogether such as Cockalorum (this is a noun which meant a braggart, a person with an overly high opinion of himself).
Medically words have been dropped altogether from usage for some conditions as we understand more such as the grip, which was a name used for flu, and melancholia was a name given for severe depression.
New words are added into our vocabulary such as the term awe-walk which was one of the 10 new words added to the dictionary in 2020 and one I wrote about in a previous newsletter.
..or they can change or take on additional meanings such as the use of the word lame. (describes someone unable to walk properly because of damage to one or both of their legs. … or is an excuse, argument, or remark, that it is poor or weak .) This is interesting in itself as a word relating to physical weakness but has become associated more widely as having negative connotations.
Other words take on a negative meaning such as the terms cripple and handicap for example. Steven Pinker, a Canadian-American cognitive psychologist and psycholinguist called this the ‘euphemism treadmill’.
People invent new words often for things they feel uncomfortable addressing. When a word becomes pejorative because of its reference to offensive concepts a new seemingly polite word is introduced to replace it.
Over time, a euphemism becomes tainted by association and so the cycle repeats itself. The euphemism becomes offensive and is then replaced by another word that in due course will also undergo the same process.
Dysphemisms are one step on from this and are terms that begin as euphemisms but become even more negative than terms they were initially intended to euphemize.
In the world of neurodevelopment words such as idiot, imbecile and moron were part of a classification system of intelligence that was used to describe what is now described as intellectual disabilities. Imbecile began its life in English in the 16th century. Moron on the other hand is the newest and dates to the early 20th century. Other terms such as handicap also eventually gained a different meaning from when they originally were used.
In more recent times terms such as special (as in special needs) and specific (as in specific learning difficulties) have also taken on different connotations across time and are also used to mean different things in different countries. Gernsbacher and colleagues (2016) describe how terms such as Special needs’, differently-abled, handi-capable, differently challenged, and physically challenged were supposedly terms to have a more positive framing but still was othering or separating people into camps (or tribes).
The use of the framing of special educational needs (SEN) also clumped a large group of children and young people together with very varying challenges which then discusses needs as if they are amorphous. This stops us from describing or understanding the specific challenges and support that are required.
Special education was a term used from the 1960s and special educational needs have been used more and more since the 1980s. In fact, there has been wide discussion to avoid the use of ‘special’, and people should be referred to as a person with X as the former framing has been considered paternalistic and offensive.
Some people have proposed changing ‘special’ to using perhaps a more realistic term children with unmet needs instead. In the above study, the authors considered what the terms used meant to other people and that when special educational needs phrasing was used it was associated with more negative views than the word disability. The term special needs doesn’t ever tell you specifically what help may be required or provide very much information at all.
Special needs may also imply for some people that a person requires a special or another place too rather than considering that processes and places need to be inclusive.
A key question we need to ask perhaps: Do people with special needs require special rights or should these be basic human rights afforded for all?
New meanings are not random. The words and phrases run through the bloodstream of our society. They shape how we see things. We use phrases such as: ‘The upright person/upstanding’ person in society and also use phrases such as .. ‘Crooked politicians ‘and ‘Never take it lying down’ which are pejorative for certain parts of our society, but we fail to notice this as they become a part of everyday parlance.
I am starting to see the use of the term neurodiversity and the language around it being used in several ways such as :
- Specifically and interchangeably to describe people who are autistic (autistic people /people on the autism spectrum) rather than considering other neurodivergent traits and conditions which often co-occur with Autism such as dyslexia, Developmental Language Disorder, ADHD, and Developmental Coordination Disorder.
- Very broadly to mean us all.
- Leading divisions in groupings e.g talking about ‘the neurodivergents’ v ‘the neurotypicals’
This takes me to my final point. I believe (this is my opinion) that neurodiversity is not about one group or can be defined by discussing which specific conditions are in and which are out.
No one person owns Neurodiversity!
What we really need to consider is why do we need to look at the reason for changing the framing. (Neuro)developmental Disorders or Neurodisabilities are also being used to describe a group of cognitive conditions which often co-occur with each other. These terms are used by some professionals. What we don’t have is a common language to have an open discussion about what we can share, what support we need, and how to ensure equity of access.
There is a move away from deficit models and language such as disorder and difficulty as we recognize that cognitive variability comes with variable spiky strengths as well as challenges. However, we must not forget that are groups of people who continue to be disadvantaged in education and employment *(and justice) and their support needs are not being addressed. We must not minimize that challenge.
At the same time, I see the world and his wife jumping on the ‘neurodiversity bandwagon’ and purporting to be experts in ND. I am concerned about this. I have seen people just this week giving bad and wrong advice to parents without the skills and knowledge about Autism when the child also had language and motor challenges and epilepsy.
As a medic who has worked in this area of work for more than 30 years I just want to state the obvious in that people are complex. I also come from a very neurodivergent family with many children and grandchildren who have/had significant challenges navigating education and employment. If I thought there was a quick win I would have found it by now!
Shiny snake oil salesmen/persons emerge when they think there is a fast buck in ‘neurodiversity’ and offer instant solutions often to people who may be vulnerable and desperate to seek answers.
The reason we haven’t got early help and support in place is that creating lasting change is much more than delivering an awareness session. We don’t live in a vacuum. Support and solutions need to be systemic. A set of simple strategies won’t solve it. We live in a dynamic and changing world and if we want lasting change we need to work together across services and systems to effect change. Often those who need support and don’t get it are because we call them by other names such as being excluded or having behavioral challenges.
Humans are diverse and that is what neurodiversity is ALL about. If we are to grab hold of this term and not make it about the NTs v the NDs we need to challenge society and our values and consider why there is inequity. It would be a great shame that neurodiversity becomes old-diversity and becomes bleached and not about inclusion at all and we end up needing to create a new term and not lasting sustained change.