The only thing I’m an expert in is me
Before we dive in, I want to say thank you to my partner. Without her there would be no fuel for this journey… thank you CJS!
I’m writing this as a father, brother, son and partner of neurodiversity or is it neurodivergence. I’m still learning the language that without knowing it has defined me for much of my life.
I’m NOT writing this as an expert of anything, other than a growing awareness of myself and those close to me. Whilst I have a MSc in Psychology and over 20 years in Learning and Development, in all honesty I know very little about this area (which is shocking).
I apologise in advance if I offend anyone as I write. I am learning as I go and publishing as I learn. What I believe to be true today and publish now, I may later learn to be wrong or not quite as I thought (I will endeavour to come back and correct these blogs – but we all know what happens to good intentions).
What follows has been a hard admission, that maybe there is more to me (and those dear to me) than I ever knew. The fact is I’ve always known there was something different about me in relation to many of my peers, I just never really knew what, until now. I have been hiding from what’s inside my own head.
I’ve known from around age 8 that I was dyslexic (or have dyslexia – there’s that language thing again). I’d recently moved to the UK from South Africa, where I guess I was seen as a disruptive child as I was on an early form of Ritalin back then. Living In London at the time my school did what they could to help, but all I really remember is being separated from my classmates to go and do extra reading and writing practice.
I was only there a year before I moved to ‘Yorkshire’, the place I now call home and still live today. I guess my new school didn’t get the letter about my dyslexia, as I never did any further work on this, then or at any other stage in my education.
However, at age 35 something was happening at work. The more familiar I became with the environment the more aware I became that I didn’t see things as others did. I didn’t communicate in a way that others could hear, at times becoming no more than noise. I often needed more time to process what was going on, closing my eyes to black out needless stimuli while I contemplated organisational challenges. I was famed for holding up meetings saying things like:
“I think the question is wrong”
What I meant was (as I could see it), we could spend the next few hours answering the question we had been given or we could take a step back and check if the question we were trying to deal with was actually right. This frustrated people to no end and I guess marked my journey of discovery into what dyslexia actually was and what it meant to me.
A new way of being
Tired of not being heard or understood and being frustrated with myself for not knowing how to read social queues regarding interactions, I spent the next 5 years reading, researching and crafting a way to be. A way to be heard, listened to, and understood. I learnt about myself, I learnt about how others interpreted me, I learnt about the value of silence and listening. I learnt about knowing when to talk vs simply waiting to speak. I learnt about the psychology of interactions. To this day this new way of being has served me well. OR HAS IT!!!
Looking back now, with new knowledge what I didn’t realise was, I was masking. I was masking who I was, how I was and how I would turn up in order to fit within the bandwidth of what was acceptable in the different worlds I occupied. I had actually unknowingly been doing it for years. Probably since the age of awareness (age 5-6 maybe). So now age 44 I’m turning another corner, slowly !
My brain is me
I didn’t realise it then, but I do now.
“I am my brain…” CJS
This is a phrase that has often risen in debates and I’ve not fully appreciated it until now (sorry). I thought dyslexia was only part of who I was. However its perhaps better described as the label that’s given to the manner in which my brain perceives, processes and then causes me to behave in the world.
“So I am my brain, I am my thoughts and my actions” CJS
I have often referred to myself as a #LazyDyslexic as a way to protect myself from the spelling/grammar police. Those who can’t see the messages as they get caught in the singular words that are used incorrectly like – ‘to’ and ‘too’. They get tripped up by these mistakes and miss what I’m trying to say. In a past time I would ask that you ignore the spelling and grammar and focus on what I say as a message. Now I realise it is equally hard for some to skip past these speedbumps as it is for me to remove them.
“I am my brain and you are yours” CJS
Dyslexia loves a buddy
It is not uncommon for people with dyslexia to also be diagnosed with other conditions. I’ve since learnt that those diagnosed with dyslexia may also have Attention Deficit Hyperactivity Disorder (ADHD) – the attention deficit subtype (by the way I personally don’t like the word disorder).
This co-occurrence of two or more conditions in one individual is called comorbidity (lovely phrase). Research in medicine and the neurosciences have shown that attention deficits and dyslexia are frequent comorbid conditions.
“Unfortunately these conditions are remarkably common, affecting up to 20 per cent of the school age population to some degree, and they account for the vast majority of children with special educational needs. The associated difficulties usually persist into adulthood, and can cause great misery for the individuals affected, their families and Society as a whole.”
“Can cause great misery” – wow!! Maybe I should have known this, due to the Ritalin I had been prescribed as a child – as it’s used to calm kids down and treat ADHD.
I have no formal diagnosis of ADHD or any of the other related conditions mentioned in the link above and don’t see myself heading down the path of getting one. But this is a trigger for me to learn more about neurodiversity and these conditions (not even sure I like the word conditions). I want to go boarder first, to understand the variety.
Language and offending people
As I said this is new to me and I really hope I don’t offend people with my words. So more for my benefit I have cut and paste some text about language from what looks to be a reputable site below:
“When talking about an individual, you’d use the term neurodivergent. Grammatically speaking, diversity is a property of groups, not one person. So on a purely linguistic level to refer to someone as neurodiverse is incorrect.”
“Neurodiversity actually refers to the diversity of human minds, the infinite variations of neurocognitive functioning within the human race as a whole. What this means is that technically everyone is neurodiverse so there’s no need to create an us/them type differentiation”
Accept and Expect Diversity
Its apparent this diversity is as prolific as the diversity we see in the world of nature around us. Below is a paragraph from a short article which quite nicely illustrates this. It ends with some great quick tips that can immediately positively impact upon teaching and learning (the field I work in and hope to become better at as a consequence of this new learning).
“There are different types of everything – flowers, trees, birds, rocks – and, of course, people. One specific aspect of human diversity is neurodiversity, or the diversity of ways in which humans think, learn and relate to others. Some estimates suggest that around 20% of the population could be neurodivergent in one way or another.”
“Unfortunately, this natural diversity of cognitive functioning is not yet recognised by our education and other systems. Some ways of being (such as those labelled with dyslexia, ADHD or autism) are currently considered ‘inferior’. They are not yet seen as a natural aspect of human variation to be accepted and expected.”
And then there’s masking
This is particularly an area of interest to me. Perhaps because I wasn’t consciously aware I was doing it much of the time and now I know I’m doing it. Again here is a quote from a site I think is important to share.
“Since we live in a world that caters to neurotypical minds, neurodiversity can often be misunderstood. As a result, neurodivergent people may feel they need to perform certain neurotypical social behaviours or hide their neurodivergent behaviours to be accepted in society.”
“When neurodivergent people mask, they do so to protect themselves …. Sometimes, masking can even be unintentional or the person may be unaware they’re even doing it.”
“For many neurodivergent people, masking is a survival tool for engaging in neurotypical societies and organizations.”
While masking may have certain benefits, it’s important to note that there are significant costs. Masking can lead to depression, anxiety and stress, as the energy required to hide symptoms (who you are) is mentally and physically demanding and can lead to burnout.
Masking over a long period of time can leave you confused as to who you are. I have found myself contemplating this on multiple occasions but never actually realising it may be as a consequence of masking. Self-perception or self-identity is skewed (people describe not feeling like their true self – they may not know who they are).
There is infinite variations of neurocognitive functioning, these variations must be accepted and expected. If it wasn’t for the insight of my partner, I would not have known much of this. I would not have taken the time to look deeper. Sometimes the most valuable information is sitting closer than you think (take time too listen, even if its uncomfortable – this is something I’m working on).
I’m going to keep this reading, learning, and writing up as long as I can. I’ve blocked time each Friday to create a story to share (grammatically riddled with errors), I hope you enjoy them.
Kurt Ewald Lindley – Masking is life or is it?