Neurodiversity – Twisting Terminology!

Talking about neurodiversity can be really hard. Getting the language right and having supportive conversations can be challenging to everyone.

Some neurodiverse people are ‘loud and proud’ about their condition and will happily chat at length about their neurodivergence. How it makes them feel, challenges they have and importantly all the extra skills they can bring. Some people will be less keen to talk, maybe they are coming to terms with a fairly recent diagnosis, feel uncomfortable and have experienced years of negative feelings and comments. As human beings we have been conditioned our whole lives to ‘fit in’.

Duke University studies showed that by the age of 3, children have learned to mimic what others say or do just for the sake of blending in. So when you do things inherently differently, it can be difficult and there is fear of others responding negatively too.

A key part of all 3SC Neurodiversity programmes is to focus on strengths and what the person adds to society and not what they take away (a bit ironic if we are talking about dyscalculia). But in order to talk about neurodiversity as an overarching term we also need to use ‘neurodivergence, neurodiverse and neurotypical’. People worry about using these phrases for fear of getting it wrong.

I use these phrases a lot every day and recently a person said to me ‘Surely you mean neurodivergent instead of neurodiverse?’ Well, yes, I did – and while I agree that it’s always best to get it right, pointing out someone’s mistake when you know what they are talking about isn’t very conducive to a positive conversation! Some people don’t even like the ‘label’ neurodiverse – thinking it refers more to a social justice movement rather than an umbrella term for a group of people.

If we get into specific terms for different types of neurodiversity, it’s even more of a mine field. If we think about Autism, the landscape has changed and is changing. We don’t use Asperger Syndrome anymore and we have also moved away from the word ‘spectrum’ instead we talk about people having spikey profiles. People may refer to autism as a condition or neurodevelopmental difference and some people use disability.

We should try to avoid negative words such as disorder when we can. Whilst we are talking about negative words, there are a lot when we start naming other specific conditions:

• DYS – lexia, DYS-braxia, Attention DEFECIT hyperactivity DIS-order, Developmental Coordination DIS-order.

Many neurological conditions have the Latin prefix “dis or dys”, meaning “apart,” “asunder,” “away,” “utterly,” or having a negative, or reversing force. It is a commonly used negative prefix that reverses the meaning of the root word. Growing up, I also used a ‘dis’ as a slang version of disrespect – ‘Don’t dis me’ was a popular phrase! I’m not sure how we can avoid the ‘dis’ moving forward but it’s starting to happen, we have removed ‘disorder’ from Autism and rather than say Autistic Spectrum Disorder, we tend to say Autism. It would be great if some of the other conditions could get a rebrand too.

We see neurodiverse people on our coaching programmes across the employment, justice and learning sectors who have taken a battering their whole lives. From negative attitudes of individuals (teachers, family, managers, etc) and society generally, the stress of working twice as hard to fit in and ‘act’ like everyone else and feelings of low self-worth due to the previous factors and others. This can have a massive impact on mental health AND physical health and if nothing else, can be absolutely exhausting. Things have changed a lot in the last 10 years; there is now more awareness than ever on all types of neurological conditions. The neurodiversity movement has expanded to become a major component of diversity, equity and inclusion programs and with that has followed more understanding and support.

Neurodiversity is all about celebrating and respecting the differences in the way people’s brains work and understanding that everyone has something valuable to offer. As part of this it’s very important to have conversations to ensure that neurodiversity and specific conditions become familiar and not a scary subject that is full of difficult words that people fear being tripped up by.

Let’s not ‘dis’ people if some of the terms aren’t always right. I’d much rather have a conversation and not get all the names 100% right than not have a conversation at all. It’s great chatting to people about neurodiversity, so let’s be kind, welcoming and help remove some of the ‘fear’ for everyone.

Kathryn Jellings, 3SC Director | 3SC