People with developmental coordination disorder (DCD) – also known as dyspraxia – have a “hidden disability”. This neurodevelopmental condition has recently been portrayed by Tosin Cole as Ryan, a time-travelling companion on Doctor Who. It’s a condition that affects coordination and movement. But, because it is often mistaken as “clumsiness”, its significant impact on everyday tasks often goes unrecognised by others.
People with DCD have difficulty learning and executing motor skills without considerable practice. This affects their ability to carry out a range of daily activities effectively and efficiently – taking down notes quickly and coherently, for example, or riding a bike. These problems exist in the absence of neurological damage, intellectual delay or visual impairment that might otherwise explain the motor difficulties.
Even though it is a lifelong condition much of the research has focused on how it presents in childhood. What hasn’t been clear until now is how having unsafe mobility changes the lives of adults with DCD day to day. So, for our recent qualitative study we decided to capture the experiences of six adults diagnosed with DCD.
We conducted in-depth interviews with each of the adults, and encouraged them to reflect on a typical day. We specifically asked them to talk about the various activities, roles and routines they regularly undertake, and identify any mobility challenges they encountered doing them.
They were all aware of their difficulties with mobility and balance. They described how they were often anxious about falling and needed to exert conscious effort to stay on their feet. Most said that their difficulties were down to poor depth perception, which made it difficult to judge steps, or poor spatial judgements, meaning they often bumped into furniture.
The adults also said that tiredness was a consequence of having motor difficulties. In their effort to navigate safely around their environment, they felt their energy levels became quickly depleted. This often left them feeling fatigued, which in turn was seen to increase their chances of tripping and falling. One noted:
I get so tired and as a consequence this increases my chances of stumbling – it is a vicious circle.
In addition, they said that they avoided or adapted the way they approached some tasks that other adults may take for granted. For example, some avoided climbing in and out of the bath and only showered. Others had to sit down to dress to avoid falling over.
The group also said that they had to delegate certain household chores to a family member to avoid the risk of falling. Some noted that hanging washing on a line increased their risk of falling, as it involved reaching above their head, putting them off balance.
Most of the adults we spoke to were frustrated that their inability to do tasks that others did with ease, may be perceived as incompetence. Particularly if they were expected to work at speed, or do two tasks at once, such as texting while walking.
Having motor difficulties also impacts on family and work, and some of the group explained that they were often not able to join family members in leisure pursuits, such as sporting activities or even walking the dog, because of their fear of falling. One adult explained how she always arrived early to work to ensure she could park nearby, and avoid a steep walk downhill from the car park. Another explained he had reduced his working hours to manage his tiredness.
More positively, what also emerged from the interviews was that all of adults with DCD were able to manage their disorder by making simple changes. They didn’t necessarily have to avoid doing certain things altogether. Leaving a landing light, for example, was cited as one thing that helped them manage their balance issues if they woke in the middle of the night.
Our study provides further evidence that, for some people living with DCD, the effect of having continued significant motor difficulties impacts their daily lives and influences the decisions they make with respect to how or if they take part in some activities. All of the adults we spoke to made conscious decisions about how they approached their roles as employees, parents and partners, which they thought had been generally successful and talked about on the whole positively. Although this was never without a certain amount of frustration and considerable effort, and it was often to the detriment of their energy levels and emotional well-being.