Neurodiversity – words matter

A few weeks ago I saw a headline in the newspaper. " Autism can be prevented by teaching parents to..."

@dan Harris from Deloitte’s wrote about this and what it meant to many people and actually had the headline changed from what was written on the left-hand side to what was then changed to the right.. " Is it really possible for parents to reduce their child's chance of developing autism?"

These sentences mean very different things to many parents. As a parent of neurodivergent children and grandchildren and having run a centre for families, children and adults for more than 25 years I know that words are very powerful and can be not only triggering but can also when wrongly used engender pain, discomfort and for some feelings of shame or being othered. The wrong words can incite anger and frustration and fear as well.

If the words may imply an intervention that 'gets rid of autism' etc it can generate a lot of emotion, and not surprisingly. How we describe things and the way they are interpreted can clash.

Most parents want support for their children so they can be their best selves. You also want their life to be as easy as possible. But headlines like this on the left can be confusing and very deceptive. They don't really describe the details of the research that was carried out and the caveats that were included in the paper about the aims of the study and their findings. While this was controlled research done with ethical consideration there is also 'snake oil' being offered to parents. It can be very hard to know what is robust research and what is a headline without substance.

Autism is not one thing and never just about making eye contact with others or not. Each child will be very different in relation to strengths and challenges and many, if not most children will also have other related developmental conditions associated with Autism such as Dyspraxia(DCD)/ADHD/Dyslexia and Developmental Language Disorder which are often co-occurring . Each child will also have their own strengths, challenges, preferences and interests. They will be living in different places and with different parents ( with their own strengths and challenges) and some will have siblings who are autistic too ... or not ... and .....

Language matters

We need to continually consider the meanings of the words we use in society. We are talking today about neurodiversity as an umbrella term to describe the cognitive differences in us all. It is today’s word. However, we need to be cautious that this does not become another narrow descriptor that ends up being othered and exclusive once again.

This made me also think about how some words meaning can change over time

Let's consider a few words and how their meaning has changed

If you consider the term spastic which means 'relating to or affected by muscle spasm' which was a term related to Cerebral Palsy, but became a pejorative term as the term spaz was used and in the dictionary is described as meaning a 'klutz' or someone clumsy. It is now generally avoided in the UK and the Spastic Society renamed itself as Scope.

How are words used - now and in the past?

I have taken three words all beginning with AW- and considered their meaning today and their original meaning.

I have chosen this for reasons of an association with neurodiversity.

- Awful, and awkward and awesome….

Awful (adj.)

c. 1300, agheful "worthy of respect or fear, striking with awe; causing dread,"?from aghe, an earlier form of awe (n.), + -ful. The Old English word was egefull.

Weakened sense "very bad" is from 1809; a weakened sense of "excessively, very great" is by 1818. The interesting thing here we go from a meaning of dread to something that was excessively great.

Awkward

?“awkward” was?coined in the 1300s in Scotland and northern England, where it meant “turned in the wrong direction.” It's a combination of the Middle English adjective “awk” (“the wrong way round, backhanded”) and the directional suffix “-ward.”

I am particularly interested in this as it has been associated with Developmental Coordination Disorder( also known as Dyspraxia). People who have DCD are often also called 'clumsy'. The term clumsy has also been associated with coordination challenges. From Middle English clumsen, clomsen, cloumsen, from Old Norse *klumsa (compare Old Norse klumsa (“lock-jawed”), Norwegian klumsa (“to make speechless or benumbed”), dialectal Swedish klumsen (“numb with cold”).

Awesome

Awesome comes?in the late 16th century, and the word had the meaning of “filled with awe.” The root word awe, meaning terror, dread, or wonder, is much older.

So, AW words have a variety of meanings but what is going on in our brains when we are in awe?

So is being 'in awe' a good thing?

Awe is a complex emotion that is typically elicited by perceptually vast stimuli. Awe is typically elicited when we are confronted with perceptually vast natural objects, such as mountains, vistas and oceans but can also be elicited by powerful and engaging music.

There are increasing studies looking at what is going on in your brains when you are in this state. Researchers have shown that while watching ‘awe videos’, participants were deeply immersed in the videos and that levels of self-reflective.

Could this be a useful way of becoming more mindless….? Could it take us out of ourselves and provide a break from busy brains? Some studies have also investigated the behavioural?consequences?of awe, indicating awe may increase our prosocial behaviour.

When have YOU experienced awe?

Have you been looking at a beautiful view and stopped thinking of anything else? Were you sitting at home and looking at a wildlife programme and being in awe of what you were seeing?

There is some interest that having a regular dose of awe could be good for our mental wellbeing.?This may be especially helpful for some neurodivergent people. The mechanism in our brains may be a means of switching off from ourselves and being so self-reflective. Several studies have reported that perceptually vast and awe-eliciting stimuli can induce the feeling of your “small self”.

Could the answer to wellbeing lie in taking a simple weekly “awe walk”?

This could be a real walk or could also come from watching some awesome videos. While some initial work has been done with elderly people it seems this may be a real area of development for neurodivergent communities that could have a high impact and low cost. Shifting our energy and attention outward instead of inward could lead to significant improvements in our emotional well-being.

I know as someone with a very busy brain that sitting and staring at a candle and deep breathing has never worked but going out for awe-walks and seeing large vistas and green is hugely helpful to my mental wellbeing.

Maybe being awe-full is a really good thing to be...

SO Check your language and check other's understanding to be inclusive

This week I wanted to challenge the meanings of the words we use and now and in the past. Be aware that what we all say may be interpreted by others very differently. By writing this it allowed me to challenge my understanding of just a few words in the context of neurodiversity. I hope this challenged you too.

“I shall look at you out of the corner of my eye, and you will say nothing. Words are the source of misunderstandings.”

―?Antoine de Saint-Exupéry

The author

Professor Amanda Kirby is an oddball that doesn't quite fit into one category very well. She has a lot of different lived experiences of being a parent of a range of children with different talents and skills. She is a medic and has worked in the health, educational, employment and justice sectors and in clinical, research and academic settings.

She is the?CEO of Do-IT Solutions , a 'tech for good company. Her opinions are all her own. She has developed Profiling tools to help maximize the neurodiverse talent and used them in a wide range of settings.

She published a book in 2021 on?Neurodiversity at Work ?with Theo Smith and is one of the 20 UK Voices on LinkedIn in 2020.

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