Into the unknown – my dyspraxia diagnosis story

Dyspraxia also known as developmental co-ordination disorder (DCD), affects movement and co-ordination. It is thought dyspraxia affects up to 6% of the population, with up to 2% being severely affected.

To mark Neurodiversity Celebration Week, Louise Saunders, a Specialist Workforce and OD Officer at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, has shared her experience being diagnosed with dyspraxia.

It’s September 2017 and I am so excited to start the master’s degree I’d had to defer from last year because my then nine-month-old son screamed his way through a four-day settling in period at the local nursery. The babies come, first don’t they? So that was that, I emailed the course leader to begin the deferral process.

I guess I felt a quiet calmness about not having to start the course in 2016 as something was still bugging me from my last dalliance with education at undergraduate level nine years before. I had always thought, and had been told in recent years, that I had great academic potential. Yet when I studied for my English degree, and in college before that, there were many times when I would cry with frustration because I couldn’t think of the word I wanted to write. I say write because I wrote everything; all my notes and assignments were on paper.

I knew I was intelligent and that I had the capability to write engaging content, however I just could not get my words on paper. Ideas would float into my head and then dissolve into a pixelated scatter or bounce out before I was able to retrieve them.

Ideas would float into my head and then dissolve into a pixelated scatter or bounce out before I was able to retrieve them.

I panicked about deadlines and couldn’t figure out where to start with the list of assignments. I had heard of dyslexia – maybe that was it? But I could spell? I was doing a degree! So, could there really be something ‘wrong’ with me? This language makes me cringe looking back: “Something wrong with me”. I had put it to the back of my mind time and again and forced myself not to be so dramatic and get on with the work.

That was what we did, working class kids; we got on with it. “Stop whingeing Louise!” I could vividly hear my mother exclaim in my mind. Of course, it would be 10 years after I’d first graduated before I worked up the courage to enrol on the master’s and took the decision to ask for help before I started the course.

The disability support team at university were great. “I’m disabled?” I questioned internally. The guy in the white t-shirt with the intelligent looking glasses (he certainly looked more like an academic than I did) listened to my concerns and booked me in for an assessment. I wasn’t sure who with and was slightly concerned that he’d said I would have to pay for the assessment if there was nothing ‘wrong’ with me. But I wasn’t going through my previous educational experience again, so I hesitantly agreed.

I’d always managed with assessments, so I wasn’t worried. I’d always managed to pass most things in the end; however, the neurological diagnostic assessment was THE most uncomfortable experience! Worse than SATs, GCSEs, driving, worse than anything! Everything that I had subconsciously avoided, all the puzzles and (fun?) games I would leave on the shelf at indoor play – were in the assessment. Guess the pattern, matched the shapes, make sense of the words… it was mentally exhausting. I had already prepared myself to receive the dyslexia diagnosis.

After my assessment, the conversation with the educational psychologist went something like this:

“Have you ever heard of dyspraxia before Louise?”

“I think I remember someone being called clumsy a few years back…”

“I can tell you that you are showing a full dyspraxic profile,” said the educational psychologist.

“I’m sorry? I thought I was dyslexic?”

“I can give you some links to further information online along with your written report, which you will receive in approximately 2 weeks.”

And so, it began, the peaks and valleys of me trying to understand my previously unknown identity. I didn’t know how to view myself. I had no idea how other people had or would, view me. Who even was I? Dyspraxia? Memories, falling into my mind and my attempts to analyse my historical experiences and relationships to the nth degree.

I didn’t know how to view myself. I had no idea how other people had or would, view me. Who even was I? Dyspraxia? Memories, falling into my mind and my attempts to analyse my historical experiences and relationships to the nth degree.

I recalled the only bike I could ride as a child, the green one that was too small with the ‘really wide’ wheels. I had cried and cried when I was given a shiny new lilac “grown up” bike on a 1980s Christmas morning. It was years before I agreed to sit on it – by which point it was too small.

I now understood why the famous athlete at the opening ceremony of the Europa Games held in Gateshead – which my school was taking part in – was getting increasingly frustrated with me because I kept doing ‘step… step… jump’, despite his repetitive ‘HOP!’ demands.

It is a part of my identity – now that I know about it – isn’t it? You don’t just have dyspraxia, and then put it away on the days when you can’t be bothered to deal with it. My dyspraxia is me, it’s how I think, how I behave, how I experience and how I move, I had to learn to get to know myself.