‘The world is just so fast, and I’m not fast… it’s just really, really difficult to keep up’: A qualitative exploration of the lived experience of adults with Developmental Coordination Disorder

Abstract

Background Developmental Coordination Disorder (DCD) is an under-recognised neurodevelopmental condition impacting 5–6% of the population. There is a growing evidence base showing the deleterious impacts of poor motor skill development, however there is a distinct lack of research gathering in-depth insights which explore the impact of DCD within both childhood and adulthood. Methods Ten online lived experience interviews were undertaken with adults who have a diagnosis of DCD/ Dyspraxia (8 females, 2 males), lasting between 30 minutes and one hour. Participants were recruited both nationally and internationally. Lived experience interviews focused on experiences in primary care, education, friendships, wellbeing, employment and romantic relationships. Data were transcribed and analysed using inductive thematic analysis. Results Emergent themes highlighted a major lack of societal awareness in all life domains, which often led to participants facing difficulties navigating health, education and workplace systems for support, resulting in relative abandonment and a lack of validation within their lived experience of DCD. Conclusion Individuals with DCD often report feeling alone, isolated and misunderstood in a world which presents challenges for them across all aspects of life. There is an urgent need for the profile of DCD to be raised by insider voices as for many, DCD often transcends diagnostic criteria to wider challenges, for example executive functioning. Fundamentally, more needs to be done to ensure a lifespan approach to DCD, to allow greater opportunities for adults with a diagnosis to thrive alongside their ‘neurotypical’ peers.