This Wednesday to Saturday (July 6 to 9) the University of British Columbia's Department of Occupational Science and Occupational Therapy is hosting their 14th International DCD conference to raise awareness about development coordination disorder (DCD) as well as relevant research, and effective rehabilitation interventions for it.
DCD is a neurodevelopmental disorder, which affects one in 20 children globally, says Jill Zwicker, conference chair and an associate professor in the department.
This means DCD affects one to two children in every classroom in Canada. But it's also a disorder that is under-diagnosed.
Zwicker notes the conference's goal is to increase awareness of the diagnosis, which she says is the biggest barrier.
"It's this sort of team approach that you need in addition to being aware that it exists in the first place," she says. That team effort consists of an occupational therapist (OT) or physical therapist (PT), and a medical professional, she says.
"The OT or PT might see these concerns but they're not able to provide the diagnosis per se because that needs to be [done by] a medical professional. But then the medical professional doesn't know how to assess the motor difficulties that the OT or PT would pick up."
What is DCD?
DCD affects a person's movement and co-ordination, like dropping objects, having difficulty writing, or using scissors.
"Children with DCD have difficulty learning motor skills from a young age, so that could be from learning how to use a knife and fork to tying shoelaces, ride a bike, swim. So both fine and gross motor skills," explains Zwicker.
In the past, people often dismissed DCD symptoms as behaviours that the child would "grow out of." However, the pediatrics occupational therapist says it persists through adulthood.
"The inability to learn these motor skills then also starts to impact mental health, in the sense that the child realizes they can't do things as well as their peers. They start to withdraw from activities. It affects their self esteem. And some people get quite anxious and depressed. And it affects overall quality of life."
Zwicker also notes there is "about 50 per cent co-occurrence with attention deficit hyperactivity disorder," also known as ADHD. However, even though children with DCD may have attention difficulties, the primary challenge is the learning motor skills.
"So it could be at preschool during arts and crafts and playground, things that might get picked up by an early childhood educator, or a kindergarten or Grade 1 classroom — more about the child's ability to do printing, cutting, colouring type of activities," she says.
And if they don't get picked up early on, then as the child grows older, it may look like non-compliant behaviour in the classroom, she says. That means they might refuse to participate in the activity because they know they won't excel at it.
Instead of educators noting motor difficulty, they might focus on the non-compliant behaviour, says Zwicker.
Barriers to effective rehabilitation intervention access
Another major aspect of the conference is increasing awareness around access.
At present, rehabilitation interventions for children with DCD are only available to families who can pay for it privately, since occupational therapy and physical therapy is not part of B.C.'s medical services plan.
Even if educators notice that a child is struggling with motor skills and they alert the parents, they might struggle to seek help from therapists because it's not part of the public health-care system.
"We're trying to sort of increase awareness that there's this group of kids, that's very common, and we can make a difference in their lives with probably a small amount of funding comparatively to other things to affect lots of children and families," says Zwicker.
Part of this intervention is aiding in the development of cognitive and problem solving strategies to "talk their way through how to perform a motor skill" instead of simply learning how to do it. Zwicker says this is something typically developing children do without realizing it. This approach is known as cognitive orientation to occupational performance (CO-OP) therapy.
"It has to be a lot of conscious effort on the part of a child with DCD. The therapy is designed to teach them how to work through that problem solving approach in order to solve their motor difficulties, with the hope that they would then be able to use those skills in another situation when a therapist isn't there," says Zwicker.
She also adds that her team's research has shown that "children with DCD show differences in brain development which we have captured on MRI, but that we can change brain structure and function, and motor skills with the CO-OP therapy. More evidence that this approach is effective and should be offered as standard of care [is needed]."
Parents of children with DCD
When Sue Hille noticed that her son wasn't walking until he was about 22 months old, she didn't hyperfocus on it since many children have their own timeline on early milestones.
But then when he entered preschool and kindergarten, his teachers observed that his motor skills were not at the same level as his peers. Hille recalls that he was "struggling with handwriting, the ability to form letters, and the dexterity needed to hold a pen and write was proving a real challenge."
So Hille and her son sought out an occupational therapist for assistance with handwriting. But the therapist encouraged her to learn about DCD through CanChild, a research centre within McMaster University's School of Rehabilitation Science.
After learning more about the neurodevelopmental disorder, the family returned to the occupational therapist who ran some assessments. Then, Hille took her son to a pediatrician who confirmed the diagnosis of DCD.
"It was pretty early on. We're very fortunate to have been diagnosed at that age," she says.
For Hille, resources like CanChild were helpful for understanding how to support her son. For example, one of the resources the research centre offers is a help sheet for each year at school. It outlines how DCD might present itself at a particular age.
In addition to misconceptions, like children growing out of DCD, Hille echoes Zwicker's statement that the disorder impacts the child's overall quality of life.
She also emphasizes that DCD doesn't affect intelligence.
"The intelligence is there. They struggle to meet the written output required in class because handwriting is a difficult task for them. And so to meet the output requirements of class sometimes means that their grades don't always reflect what they're capable of. We need to find creative ways for them to demonstrate their learning in other ways."
This is a sentiment that Zwicker agrees with. But it's not a a simple matter of under-performing in school.
"So the children — if they're not recognized early, they also are under-performing at school, which means they're also underemployed when they get out of school. Whereas if we provide a little bit of support along the way, they could have much more potential and we could avoid those sort of mental health things that happen with doubting yourself or poor self esteem or being depressed or anxious."
This is why the help of an occupation or physical therapist can be useful for setting up the child for success, she says.
"The therapy can do a lot in terms of improving day-to-day function, and sort of quality of life. And then a therapist can also guide and direct them to jobs or professions where it would tap onto their strengths and not target their weaknesses," says Zwicker.
Parents for advocacy
Because DCD is under-diagnosed and has barriers to diagnosis, medical professionals might reinforce the idea that the child will grow out of it.
Hille says it's imperative that parents advocate for their child's health when faced with such dismissal.
"As a parent, we are the front line of advocacy for our child, of raising awareness and advocating. My journey as a parent was I tried to educate myself as much as I could. We are the front line of awareness and advocacy and awareness of because it presents differently for every child."
And although Hille learned a lot through her research about DCD, she noticed there wasn't a lot of writing by parents of children with the disorder.
"I really kind of wanted to know, what's it like as a parent with a kid at school. I couldn't find [many] articles from a parent's perspective from the day-to-day rough and tumble of lives."
So when the pandemic hit, Hille decided to create a website called DCD Kids that housed all the resources she found helpful through her journey, as well as blog posts related to her day-to-day experiences.
"My goal was around raising awareness, where we have four pillars: awareness, advocacy, action and achievement. And it was around wanting to start a conversation, and building awareness. Not just for my own child, but for other families that are dealing with this."