The Forgotten Disability
Despite being a lifelong disability affecting more than one million Australians and five per cent of the total population, DCD has always been hidden from the public discourse.
DCD - also known as Developmental Coordination Disorder or dyspraxia- has historically been poorly identified. Over the past century, terms such as ‘clumsy child syndrome’, ‘minimal brain dysfunction’, and ‘disorder of attention and motor perception’ have been used to describe the condition.
These labels are extremely simplistic as they fail to capture the complex and multifaceted nature of DCD. Involving marked impairments in learning and performing movement skills, the disability has the capacity to inhibit many aspects of life, including daily living, academic and occupational achievement, and participation in leisure and play.
Alyshia Boettcher, high school educator and secretary at DCD Australia, lives with DCD and has felt how physically and mentally demanding the condition is.
“The cognitive load of managing my fine and gross motor problems is enormous and it’s very, very fatiguing,” Boettcher says.
Boettcher’s “gross motor problems” and “significant problems with managing fatigue” have made her be cautious with “some self-care stuff like cooking and cleaning”.
“I have to be kind of mindful of when I’m doing it and how long it’s going to take for me to do it.”
Boettcher has noticed that her exhaustion and challenges with manual tasks become more severe late in the day.
“I go to the gym in the morning when I’m mostly alright,” she says. “But by the end of the day I struggle to cut vegetables, my driving is really impacted, and I’m just really shattered feeling like I’ve got the flu or something.”
Due to the fine and gross motor struggles that come with DCD, Boettcher has found that she takes extra-long to learn essential activities such as driving. She says she has “really struggled to learn to drive” and she did not receive her provisional license until she was 26.
“Driving is still a problem for me and I will choose not to drive if I am still fatigued.”
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The Knowledge Gap
Boettcher’s experience alone highlights how profoundly DCD can affect daily life. Yet the disability is still severely under-recognised not just by the general public, but also by the health and education sector.
According to a 2021 study published by Child: Care, Health and Development, a common theme among four groups of people in Australia- caregivers, teachers, allied health professionals and medical professionals- was poor knowledge of DCD.
The study found only 53 per cent of allied health professionals and 33 per cent medical professionals had identified or diagnosed DCD. It also stated that more than 80 per cent of these two groups felt that the DSM-5- the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders- contained “inadequate information to make a DCD diagnosis”.
Issues around lacklustre information on DCD also applied to teachers and caregivers.
According to the study, 65 per cent of teachers believed an absence of DCD knowledge prevented adequate support for children with the condition and 80 per cent agreed that children at school were labelled as “lazy” or “defiant” when they had “gross and fine motor skills impairments”.
The study found that 93 per cent of primary caregivers felt that more education about the signs of DCD was needed and only three per cent thought there were enough resources for children with the disability.
The need for better support mechanisms for children with DCD is also explored in a 2023 study published by Australian Occupational Therapy Journal.
Involving 175 occupational therapists working in Australia, this study found that only 47 per cent had worked with children with a DCD diagnosis while 50 per cent had worked with children with outdated labels such as “motor learning disability” or “clumsy child syndrome”.
The study also stated that 40 per cent of therapists assessing children failed to follow best practice guidelines which involved the “combination of clinical observations, parent questionnaires, and standard motor assessments”.
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Supporting Students in the Classroom
With DCD affecting one child in almost every Australian classroom, Boettcher feels continual failures to properly support children with the disability is “harming early intervention” and “creating problems further down the line”.
“I work with high school students and a lot of my students might have a diagnosis of ADHD or dyslexia,” she says. “But there’s some obvious characteristics of DCD there and a lot of their troubles at school are actually caused by their challenges with DCD.”
Boettcher believes insufficient attention to children’s struggles with DCD will prolong the “social effects” of the condition.
“If one kid can’t keep up with playing with their peers due to their gross motor challenges, they’re going to have trouble forming social relationships which then causes emotional concerns,” she says.
So giving a child a diagnosis can be a valuable way of “getting a really clear picture of what the actual thing is that’s going on and targeting treatment for that”, according to Boettcher.
“A child who is struggling with their acquisition of fine and gross motor skills and who is autistic will have struggles that are different to a child with DCD,” Boettcher says.
“It’s really important that we know why those challenges are there so that we can properly help.”
As a teacher, Boettcher has been striving to help students who have signs of DCD or any other learning and coordination difficulties.
“Some of my kids have a dysgraphia diagnosis where their problems aren’t related to written expression,” she says. “They’re related to fine motor problems, their finger strengths, and their grip.”
Boettcher has paid attention to “what the students are actually struggling with” so that she can “make things better for them” and help them “access the curriculum”.
She has also been playing a role in positive change through her involvement in DCD Australia. A national organisation established in 2014, DCD Australia has been aiming to improve the lives of children and adults with DCD through strategies such as advocating for access to services, raising awareness, and educating professionals and the community.
The organisation has “run a few workshops that have been online for parents and caregivers” so that more adults can be encouraged to contact them and ask them for “diagnostic pathways”, according to Boettcher.
“Unfortunately there’s no gold standard for even a diagnostic process in Australia, so we’re really looking at fixing that for adults because so many adults want to know what’s going on,” Boettcher says.
Boettcher calls for more time to be invested into “teacher education” in order to “ensure inclusion for all students” and “remove barriers”.
“Teachers of all ages need to know what DCD is and how to support students with DCD,” she says. “A lot of those challenges and barriers can be overcome or completely removed if teachers have an understanding and the tools that need to help for DCD.”
DCD Australia has been making an effort to “support teachers and also parents and caregivers of children with DCD” by adding “fact sheets and resources” to its website, according to Boettcher.
But Boettcher is hoping for DCD Australia to provide more “professional development” for teachers.
“That’s something I hope in the next year we can look at because unfortunately at the moment we’re relying on a teacher to look at a student’s personal learning plan or their IEP depending on what state they’re in,” she says.
“The awareness isn’t there so I’m hoping that’s something we can focus on in the next year or so, but we’re all volunteers so it’s quite hard.”
Striking Findings on DCD’s Social and Emotional Impacts
The school system’s handling of DCD has indeed been a prominent area of concern. In 2020, The Kids Research Institute Australia in collaboration with Victoria University release a survey called ‘Impact for DCD’, drawing attention to the effects of DCD on children’s wellbeing at school.
According to the survey, 82 per cent of parents felt their child’s movement difficulties were negatively affecting their education, 62 per cent said their child had trouble forming friendships, and one in four reported their child did not enjoy attending school.
Children’s dissatisfaction with school stems from a variety of factors. A notable one is the stress they face at the idea of certain school activities such as sport. According to the Impact for DCD survey, 56 per cent of parents felt their child was not supported to engage in physical education lessons at school and 57 per cent reported that their child was too uncomfortable to attend the school’s sport events.
There is also a lack of systems in place to meet children’s learning needs. The survey found that only half of children had an individual learning plan and only a third were given extra time for tasks impacted by their movement difficulties at school.
Vincent Mancini, Senior Research Fellow in the Human Development and Community Wellbeing team at The Kids Research Institute Australia, says children with DCD give up on tasks at school due to their inability to keep up with their classmates.
“You’ve got a child who is uncooperative, not completing their work on time or participating in the classroom,” according to Mancini.
“Teachers might think that’s because they’re distracted and unable to pay attention, but what may be happening is that they’re having trouble handwriting and they’re falling behind.”
Mancini is concerned that this problem creates a “self-fulfilling prophecy” where children feel as though they “fall further behind” if they keep trying.
“If you think about how learning is in classrooms it doesn’t take very long for these children to fall very far behind their peers,” he says.
Children’s delays in fine motor skills can damage their self-worth and can cause them to feel inferior to others, according to Mancini.
“In Australia we idolise our athletes and our sportspeople,” he says. “We all want to be the next Nick Daicos, Steve Smith or Ash Barty, but what happens is you’re falling behind and your peers are starting to become better and better at sport.”
Mancini believes this has a profound impact on “your willingness to participate” and “how other people perceive you”.
“Around the age of six children start to develop their own sense of self and they make these upwards and downwards comparisons to their peers,” he says.
Children who are falling behind start to tell themselves that “they are not as good as these other people” and that they are “bad at this”, according to Mancini.
“What that means for how children form their own sense of self-esteem and make friends in the playground is something that is particularly concerning.”
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Parents’ Role: Encouragement and Understanding
The need to address the lack of self-confidence among children with coordination difficulties is a matter of urgency. While effective and empathetic teaching can be a crucial solution, there is an elephant in the room which needs more attention- the role of parents.
Children’s challenges with DCD can stem from the “unconditionally high standards” which parents set, according to Mancini.
“Sometimes you’re a sporty family but you’ve got a child who’s clumsy and that makes you angry and you take that out against your child or you push them even harder,” Mancini says.
“I wonder how that fractures the relationship these parents have with their kids if they’re genuinely trying but motor coordination disorder is preventing them from kicking a soccer ball or catching a ball.”
So Mancini calls for parents to be “understanding or empathetic to what’s happening with their kids” in order to maintain “good well-being and family functioning”.
This can be achieved if parents encourage their children to participate in motor programs which are “developed by exercise scientists” and are aimed at “helping children move their bodies and be physically active”, according to Mancini.
“What may come out of participating in these programs is your self-competence, your self-esteem and your ability to gain proficiency in something that was challenging for you.”
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Limited Visibility of DCD in the Media
The invisibility of DCD at schools and homes is mirrored in the broader public sphere. While mainstream news publications like ABC News have published the occasional piece about DCD, the condition has still generated a sparse amount of coverage compared with other disabilities, especially autism, ADHD and dyslexia.
For Mancini, more frequent media coverage of DCD would help parents and teachers find ways to assist children with the condition.
“Good, quality reporting is necessary to get people to think about the condition and how that would apply to their children or the children they’re responsible for if they’re a teacher,” he says.
“I see the value in all forms traditional and non-traditional media in being able to spread that message.”
DCD is a topic that is too academic-focused and needs more attention from the general public rather than just researchers, according to Mancini.
“As an academic I write journal articles that are read by other scientists and I can do that very easily,” he says. “But have your biggest impact when that work leaps out of the ivory tower of academia and into the hands of the community who we’re here to serve.”
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How Celebrities Can Inspire People with DCD
Even though the media has always been slow to cover DCD, multiple high profile individuals have helped raise awareness of the disability by coming forward and publicly announcing that they are living with it.
A notable example is Daniel Radcliffe, an English actor best known for playing the title character in the Harry Potter film series. A 2022 article published by Telegrafi recounted an earlier interview in which Radcliffe discussed the symptoms of his condition, including “terrible handwriting” and an inability to tie his shoes. He also explained that he “suffered from a lack of self-confidence” due to feeling “small” and that his desire to become an actor was driven by his DCD.
It is also worth looking at the story of Florence Welch, the lead vocalist and primary songwriter of British indie rock band Florence and the Machine. In a 2012 interview with The Irish Times, Welch said she was “very proud to be dyspraxic” and her condition helped her thrive in the creative industry as she could “think in a different way”.
A biographical piece by The New York Times Style Magazine Australia delves further into her experience. It states that she was “a daydreamer and had difficulty at school” and that she would leave class to “sing in the school hallways where acoustics were good”.
Professor Beth Hands, Senior Research Scholar at the University of Notre Dame Australia’s Institute for Health Research, says these stories show that people with DCD can achieve their goals despite their setbacks.
“It’s clear that these celebrities have found pathways where they can build on what they’re really good at, whether that be acting or singing,” Hands says.
Hands considers DCD to be a “different condition with so many different ways of finding a pathway that you can work with”.
“It’s finding what is their strength and what is their interest and building on that,” she says.
Parents should “facilitate opportunities” for their children to “make friends” and “find activities that they might be good at”, according to Hands.
“That could be computer skills and joining computer clubs,” she says. “There are ways of socially interacting because being socially isolated is a big issue, so we need to support parents in finding a pathway of a child’s interests or a sport.”
A sport which Hands recommends is soccer as it requires fewer hand-eye coordination skills than other sports.
“It’s a round ball, it’s a white ball, and it’s a more predictable ball,” she says.
But some children with DCD have become “quite successful” in other sports such as swimming, according to Hands.
“It’s great that people with this condition are coming out and saying that this is me, this is what I do, and you can do it,” Hands says.
Author: Rafael Gerster
