Dyspraxia, or developmental co-ordination disorder
It was a comment from one of the mums in my mothers’ group that changed my life. I was living in London and our group was having a night out. Talking about driving, which none of us did very often, I said I had trouble judging where my car was in relation to other objects and also how fast other cars were going. I also admitted to having an appalling sense of direction. One of the women stated simply, “You might have dyspraxia.” I was stunned. I had never heard the term before.
As soon as I got home, I looked it up online. As I read through all the symptoms, shivers ran through me. At the age of 38 I finally had a name for what I had always thought of as my “freakishness”. The more I read, the more I knew I had dyspraxia.
Once dismissively referred to as “clumsy child syndrome”, dyspraxia or developmental co-ordination disorder (DCD) is a neurological disorder that affects the brain’s ability to plan and process motor tasks. The muscles develop normally but the messages from the brain are somehow disturbed and researchers aren’t sure why. The condition is often hereditary.
Dyspraxia can affect gross and fine motor skills, perception – visual, sensory, memory, organisational –and speech, to greater and lesser degrees. In my case, it has affected my fine and gross motor skills and my spatial skills.
As a child I couldn’t ride a bike, I struggled to tie shoelaces, use cutlery and scissors, fit keys into locks. I constantly lost things. Sports involving balls sent me into a cold sweat of panic as my brain couldn’t cope with trying to follow, throw and catch the ball, as well as anticipating other people’s movements. I missed social cues and I often stood too close to people.
My parents and teachers knew there was something wrong. When I was about 10 or 11 I went for an all-day assessment. At the end, they said my verbal abilities were off the chart. So were my spatial skills – but in the opposite direction. I remember staring, dumbfounded, as the test administrator made shapes with two-tone blocks and asked me to do the same. But in 1980s South Africa, where I grew up, nobody mentioned dyspraxia. They just told me they had never seen this disparity of abilities before and they didn’t know how to help me.
My overriding emotion during my school years was shame. Things improved once I left, though. I no longer had to do sport or geometry. And I had developed ways of coping with and concealing my “freakishness”.
Discovering on that night out in London in 2014 that there was a name for my struggles, and learning more about the condition, was a revelation. But I wanted an official diagnosis. After moving to Sydney, I still struggled to find anyone who could help me.
Dyspraxia has recently received some media attention in Britain, with the latest series of Doctor Who featuring a character with dyspraxia. It’s the first time the disorder has been represented on TV. And actor Daniel Radcliffe and singer Florence Welch have both spoken about their dyspraxia. But most people are unaware of the disorder.
“Because dyspraxia is not well recognised it’s difficult to determine how many people actually have the condition,” says paediatric occupational therapist Kathy Clarkson. She says of the children she sees, “a significant percentage have some level of co-ordination dyspraxic issues” and about 25 per cent of her current case load has received a formal diagnosis of the condition.
While Britain has an active Dyspraxia Foundation, there was no organisation in Australia until just under two years ago, when Samantha Elbers and her husband Brian launched Dyspraxia Kids Australia (now called DCD Australia) to support parents and children with the condition.
When the Elbers’ son, Kai, was diagnosed with fine motor and verbal dyspraxia (or childhood apraxia of speech) in 2015, at the age of six, they discovered that although he could see an occupational therapist (OT), they couldn’t receive funding and there was no support for the condition. “There was nothing in Australia so we decided to start our own organisation,” says Samantha.
In conjunction with researchers, the non-profit group has launched the Impact for DCD survey. In what Elbers says is the first study of its kind in the world, the survey aims to assess the socioeconomic impact on children and families with the condition. The survey closes in February and more than 300 families have already participated.
“The study will give us the statistics to present to government bodies,” says Elbers. “Until now, researchers haven’t had a vehicle to voice their findings in Australia.”
DCD Australia is also collaborating with researchers, OTs and paediatricians to form a DCD alliance to help with diagnosis of the condition. Elbers also organised a conference in August that brought parents, allied health professionals, researchers and OTs together.
“From what parents are saying, there’s very little awareness of the condition,” says Elbers. “I get 10 to 20 emails a day from around Australia. People are desperate for information.”
Kathy Clarkson says a formal diagnosis of dyspraxia can only be made through a specific, standardised test, which very few OTs in Australia are trained in.
Both Clarkson and Elbers say another reason there is so little awareness of dyspraxia compared with disorders such as dyslexia, autism and ADHD is because there is often a significant amount of overlap between them. Many people have more than one condition, so dyspraxia is often missed.
If a diagnosis is made, it’s usually when children start school and have trouble learning to write. However, Elbers and Clarkson say most teachers aren’t aware of the condition. “Teachers are so under the pump,” says Elbers. “I’ve had to educate my son’s school.”
Dyspraxia is also thought to be more common in males than females but a 2015 study by the Dyspraxia Foundation in Britain found it may be under-recognised in females.
As for me, I eventually found an OT who normally sees children who agreed to see me. She confirmed what I already knew, but she couldn’t really offer any tips to help me with the things I still struggle with.
I’m now 42 and I still struggle with driving. I can barely ride a bike. I can’t use a skipping rope or apply make-up without looking like a child covered in face paint. My daughter prefers my husband does her hair.
While I can’t help wondering what my life would have been like if I’d been diagnosed as a child, what I felt most on discovering I had the condition was an overwhelming sense of relief. It wasn’t my fault.
I wasn’t stupid, impractical or not trying hard enough. And I wasn’t alone. There were others like me. While there is no support for adults in Australia, I have found enormous comfort in a Facebook group for dyspraxic adults, most of whom are based in Britain.
When I told a close relative about my diagnosis she said, “But you always knew you had something.” Well, yes. But having a name for my condition and starting to understand how it affects me and how my brain works means I’m beginning to see and acknowledge those previously “hidden” parts of myself. It’s a big step.
This article was first published in the print edition of The Saturday Paper on Jan 26, 2019 as "Spatial education".
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