From June 5th to Jun 9th I was in Ghent, Belgium on a combined DCD15-IMDRC6, a joint conference of the International Motor Development Research Consortium and the International Society of Research and Advocacy for Development Coordination Disorder. My reason for visiting the conference is my background in Human Movement Sciences in combination with my own experience with difficulties in motor learning.
No formal diagnosis for me
Although I recognize very much in the diagnostic criteria, I do not have a formal diagnosis of DCD. One reason is the refusal of medical professionals to do so, the other barrier is in the DSM description. In the DSM 5, the D criterium is ’the deficits cannot be better explained by any other condition’. This seems to exclude a diagnosis in people with X and Y chromosome variations, like me. Those people can have a co-diagnosis of autism spectrum disorders or ADHD. Why not a diagnosis of DCD when they match the ABC criteria?
So many marbles in our buckets
There is also a huge overlap in the different conditions now gathered under the umbrella of Neurodiversity. The bucket with different colours of marbles that prof. Amanda Kirby uses as a model is great for understanding this. It helps professionals, parents and people with the lived experience. It was great to hear her presentations after following her on LinkedIn for a long time.
From observation in 1994 to research in 2024
I am happy to see that there has been substantial progress over the last 30 years. During all the exercise testing I had to do as a student, I had a striking gap between VO2max (maximum oxygen uptake) and submaximal tests like the shuttle run test. My VO2max was around the 75th percentile and the submaximal tests were below 5th. Now, VO2 is measured in larger groups and this will help the understanding of DCD. More attention for motor development could benefit many children and adults. Motor development is crucial for participation and developing other skills. Being able to participate is essential for mental wellbeing, being able to be active is essential for physical health too.
Lived experience in the audience and on stage
An element I really appreciated in the conference is the participation of people with lived experience. We are different and at the same time we share similar experiences. Living with DCD can be exhausting as everyday life requires more energy, both mentally and physically. Fatigue is a common complaint. Several people with lived experience told about it in their stories. On the other hand: with perseverance and and drive, we can do so much. My childhood dream of a ‘ballet group for stiff people’ came to life with a group of children with DCD performing on stage together with (semi)professional dancers.
Barriers for participation
My arrival at Gent Sint Pieters railway station was an illustration of what we face every day. Elevators present but not working yet. Carrying my luggage and my bike down the stairs was a challenge. Luckily I had a smooth ride to the camping where I stayed in a nice wooden lodge.
Unfortunately, also during the conference I had some accessibility issues. People in the audience refused to use the mics because ’they do not need them’. They may not need them to speak. But how many people in the audience may need them to hear easier? How many have hearing loss, auditory processing disorder or do not have English as a first language? Every help is welcome to use our energy effectively.
My ride home and roads for the future
To return home, I chose to cycle from Gent to Breskens in The Netherlands. There is a ferry to Vlissingen, where I took the train back to Leiden. The road was a bit longer due to a bridge and a highway I could not cross. But weather was on my side and I had a great lunch. My travel home reflected my experience of the whole conference. It was a great experience and exhausting. I faced barriers and enjoyed.
I look forward to new research and new experiences in the field of DCD. And I hope to connect the communities of DCD and Chromodiversity. With a bridge that is easier to cross than the one in the picture.
