I was 42 before I realised what my ‘hidden disability’ was

Ideas

I was 42 before I realised what my ‘hidden disability’ was

Being diagnosed with dyspraxia explained all the strange symptoms I had suffered since my youth

Clare Empson


My 11-year-old son and I were on a mini-break in the countryside. Everything was perfect. We had a home-baked sandwich cake, a pot of tea, a game of draughts and the Rolling Stones playing on the portable record player.
I popped outside to check on the pizza oven, tripped on the hut’s iron chassis and slammed on to the gravel, chin first. I perforated an ear drum and bruised myself severely, all the way down my left side.
I am dyspraxic and this kind of thing happens to me.
In 2018, I cracked my ribs falling over a farm gate. Who knew a dog walk could be so treacherous? There’s a seriously slapstick element to all this and, mostly, I laugh at it. But sometimes, it’s depressing.
Dyspraxia is a developmental co-ordination disorder (DCD) that affects co-ordination, spatial awareness and sensory perception. It also affects memory, planning, organisation, attention and time management skills. Put simply it’s a neurological disorder that means sometimes the wiring doesn’t work. Messages from your brain just don’t get through to the relevant parts of your body.
Between 5% and 10% of the population is thought to have dyspraxia, but it is still drastically under-researched, particularly when it comes to adults. According to research from the Dyspraxia Foundation, women are less likely to get a dyspraxia diagnosis than men; schoolgirls tend to develop coping mechanisms that mask their symptoms and they don’t realise until later in life that something is wrong.
I was 42 when I finally accepted I was dyspraxic, something I’d suspected for years. I’d been driving my three-year-old to a birthday party, following “dead simple” directions from my hostess, looking forward to the pirate-themed afternoon (with a glass of champagne for the adults). But we never got there. I drove round in circles for an hour before I and my tear-stained pirate conceded defeat. Back at home, I Googled “adult dyspraxia” and that’s how I came across the Dyspraxia Foundation. Reading its checklist of potential symptoms was like a character description or one of my school reports. Poor balance and clumsy? Unfocused and erratic? Chaotic with admin? Often lose things? Poor memory and visual perception, difficulty sleeping, inability to map-read, problems learning to drive? I seemed to have it all.
Undiagnosed dyspraxia can make you feel inadequate. For years, I’d joked about being “blonde” or “scatty” as I smashed another cup or got completely lost in a building (this happens a lot). At school, my games teacher labelled me “hopeless” and hauled me up in front of the class to demonstrate how not to throw a discus; not like a maître d’ holding a plate high above his head, apparently.
My 20s were a blur of lost passports and missed planes and journalism jobs I somehow managed to hold down despite my chaotic desk. But by far the greatest challenge for me has been motherhood.
So many of the things other mothers take for granted – fitting child car seats, building toys, sewing on name tapes, map reading and navigating from A to B – proved virtually impossible. Effective mothering requires strong organisational skills: you need to be on top of those book bags, the homework schedule, the different uniforms for clubs, football, taekwondo. Keeping track of the Cubs woggle almost broke me. Putting my daughter’s hair in a bun for ballet was a weekly struggle I often abandoned. Getting lost was by far the worst thing, and it happened regularly. There’s never enough time when you have small children; throw getting hopelessly lost into the equation and you have the recipe for toxic stress.
I would head out to a new location clenched with trepidation. Finding somewhere to park – or, rather, a space big enough for me to park in – could reduce me to tears. Dressing not just myself but my tiny offspring in clean clothes, preferably with matching socks and brushed hair, was exhausting. When I look back, I recall the feeling of hopelessness, a sense of shame that I was so rubbish at these fundamental tasks.
Rosaline van de Weyer, director of charity Dyspraxia UK, says motherhood is often the time when women recognise something is seriously wrong: “I’ve had very bright, professional women coming to me, questioning their ability to care for their children.”
Confirming my dyspraxia with Marian Emmerson, a learning difficulties specialist, has proved revelatory. Tests revealed a severe visual processing disorder, one that had I been in education would have entitled me to funding, learning support and extra time in exams. Marian explained: “If there were 100 people in a room you would come 99th in terms of your visual perceptive skills. Congratulations on getting through so far. It must have been stressful.” I felt like bursting into tears.
Recognising the disorder has enabled me to change the way I approach things. I try to leave extra time when I’m going somewhere new and if I get lost I tell myself not to panic. I know from experience the awful feeling of toxic stress flooding my veins. I give myself permission not to do certain things. If it’s a long journey, I’ll take a plane instead of driving. You won’t find me on a ski slope or riding a horse. (I’ve tried both, with disastrous results.) Same goes for exercise classes like Zumba or HIIT that require good co-ordination and copying skills. The first and only time I tried a spinning class, my laces got so badly tangled up in the pedals, I had to be cut off the bike. Instead, I stick to yoga and pilates with teachers I like.
I have an aversion to being touched by strangers I’ve since learnt is to do with sensory perception. During shavasana (the corpse pose), one yoga teacher once laid his hands on my forehead, neck and shoulders. I’m sure it was meant to be soothing; it felt like a storm in my brain.
For me it’s a hundred little things that cause problems, tightening bra straps and swimming goggles, tiny fiddly buttons, certain kinds of zips. I’ve fought my way in and then out of a lace Stella McCartney top with an attached vest. I’ve now given up trying to make it work and have cut out the damned vest.
Working for myself as a journalist and author is so much easier than office life. My debut novel took nine years to write. If I were to show you the 100-plus documents entitled variations of Him, my latest, you’d understand why. Third time around, I’m using a software tool called Scrivener, which organises your novel chapter by chapter.
Discovering I’m dyspraxic has not hindered me in any way. In fact, it’s made sense of my life.
Yes, I’m pretty rubbish at the most practical aspects of parenting – there have been a few dog-ate-my-homework situations over the years – but that hasn’t stopped me loving my kids with all my heart. And now that they’re older, they navigate.
The biggest change of all is in how I view myself. Before my diagnosis, my inner critic went into overdrive. Now I can reframe those “failings” as symptoms, I can laugh at them, I no longer feel ashamed.
Dyspraxia has been described as the “hidden disability”. For me, bringing it out into the open has been life-changing.
– © Telegraph Media Group Limited (2019)

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