A new poll has highlighted the gender gap in UK dyspraxia/DCD diagnoses, suggesting girls and young women with the condition may be slipping through the netEmma Lewell-Buck exudes determination. As the Member of Parliament (MP) for South Shields in the North-East of England she’s arguably occupying one of the toughest jobs there is. And it didn’t come easily.
Her predecessor was none other than former Foreign Secretary David Miliband who held the seat for 12 years. Lewell-Buck was first elected in 2013 after Miliband stood down to become President and CEO of the International Rescue Committee based in New York. In the ensuing by-election she faced down a strong challenge from an insurgent UKIP. In doing so she became South Shields first ever woman MP.
But there was another challenge Lewell-Buck had to overcome, which garnered little attention at the time. She has a life-long condition known as dyspraxia.
Dyspraxia, also known as developmental co-ordination disorder (DCD), affects fine and/or gross motor coordination, in both children and adults. Many individuals may also experience difficulties with memory, perception and processing, along with poor planning, organisation and sequencing skills. These can have a significant, negative impact on everyday activities. Dyspraxia/DCD can also affect articulation and speech.
As with many other developmental disorders the precise causes of dyspraxia/DCD are unknown, and overlapping symptoms with ADHD, ASD and dyslexia make calculating its prevalence difficult. The Dyspraxia Foundation, the UK’s only charity dedicated to increasing understanding of condition, says that current research suggests dyspraxia/DCD is ‘due to an immaturity of neurone development in the brain rather than to brain damage’ and that is likely to affect up to 1 in 20 children.
As with prevalence rates, research on gender differences is inconclusive. While there is a consensus that dyspraxia/DCD is more prevalent among boys than girls the scale of the difference is unknown and any difference there is may be due to gender bias in assessment tools or because boys are more readily referred for assessment. This may be because girls are better at hiding signs of the condition or that they are more obvious when present in boys.
This gender gap in diagnosis – and therefore treatment – was given a fresh focus earlier this month when the Dyspraxia Foundation marked Dyspraxia Awareness Week (11-17 October) by publishing the results of a new nationwide poll it commissioned.
The poll found that over half (53%) of all female respondents said that their primary school teachers were unaware of their difficulties (compared to just 39% of the males questioned). A similar situation was reported among secondary school students, where the gap was 47% of females compared to 32% of males.
Experts from the Dyspraxia Foundation say they believe such findings may reflect teachers’ perceptions of dyspraxia/DCD as a largely ‘male’ disorder, leaving girls often overlooked in the classroom. It may also be possible that girls with dyspraxia/DCD are simply better at masking their difficulties by putting in extra effort and recruiting the assistance of friends to help them cope with the condition.
The national survey questioned 1,156 people (537 were individuals with dyspraxia/DCD; 619 were parents or carers of someone with the condition). Although the average age for diagnosis of dyspraxia/DCD is seven to eight years, this new research suggests that many people (both male and female) are not diagnosed until they are much older.
Of the 467 adults with dyspraxia/DCD who revealed their gender, 69% (320) were female and 31% (147) male. For the ‘child’ population, however, the figures were almost exactly opposite (73% had sons, 28% had daughters), reinforcing the argument that dyspraxia/DCD is under-recognised in young women who will often have to wait until adulthood before being diagnosed.
The average age of diagnosis for male respondents was 17 years, suggesting they were mostly diagnosed by ‘paediatric’ specialists. By contrast, the average age of diagnosis for adult females was 22 years. Poor service provision and unclear diagnostic pathways for adults with dyspraxia means that it is much harder to receive a diagnosis after the age of 18 years. It is likely therefore, that females with dyspraxia are missed across the age range.
The findings also indicate that the ratio of males:females who receive a positive diagnosis of dyspraxia/DCD in childhood is around 3:1 – whilst existing evidence (Lingham et al) puts the ratio of males:females with severe motor co-ordination difficulties at 2:1.
Worryingly, this discrepancy is also leading health and education experts from the Dyspraxia Foundation to believe that many girls are clearly not being referred for diagnosis at a young age and are therefore unable to access the support they need in order to reach their potential.
Lewell-Buck is a case in point. Not diagnosed with dyspraxia/DCD until she was 27 and studying for a Masters degree in social work she has talked openly about the challenges she faced prior to and since her diagnosis. Her kerbside stumble at the 2013 Labour Party conference in Brighton was just one of the embarrassing incidents she shared in an interview with Telegraph journalist Tom Rowley. ‘My balance is always a bit off and I just went flying,’ she explained. ‘But people started looking at me and I thought: they’re looking at me because they think I’ve been drinking.’
She went on to say that the incident was nothing out of the ordinary and recounted the everyday difficulties she had faced since childhood, from her efforts to pass her cycling proficiency test at primary school to her six unsuccessful attempts to pass her driving test many years later. But persist she did, gaining her licence on her seventh try.
Lewell-Buck’s cathartic interview also marked another milestone. As a public figure she took the bold decision to speak out about the condition to help shed light on it and encourage others to seek help. Now an Ambassador for the Dyspraxia Foundation she has a very personal interest in helping address the unidentified needs of girls and young women like herself who may feel their hopes and dreams are unrealisable. It’s a challenge that the Dyspraxia Foundation is also keen to address.
So how does the Dyspraxia Foundation plan to respond?
‘This survey really has underlined a pattern we’ve observed for some time and whilst the results do reinforce a concerning trend of many girls sliding under the radar of relevant healthcare professionals, it does allow us to push on with plans for developing specific materials, tools and resources for girls and adolescents as well as for their parents and teachers,’ says Sally Payne, Paediatric Occupational Therapist and Trustee of the Dyspraxia Foundation.’
Payne says that whilst the poll has flagged up some very real issues for schools, families and support services, it’s also vital that they don’t become disheartened and they remember that help is at hand.
‘In many ways, it is testament to the resilience, coping mechanisms and “emotional intelligence” of females that they are seemingly able to disguise some of the difficulties that might be more obvious in boys. But sadly, as they get older, issues such as developing social skills, applying make up, choosing clothes and coping with personal hygiene and periods may become harder to cope with and will inevitably make situations such as starting college, leaving home or finding a job difficult and exhausting. Through our helpline and social media platforms, we have heard of many cases where anxiety, self-doubt and a severe lack of confidence can soon set in. However, this could so easily be avoided by early diagnosis and intervention.’
Already the charity has launched a new fact sheet on personal care for girls and highlighted the gender gap at a parliamentary reception held to mark this year’s Dyspraxia Awareness Week (11-17 October). Hosted by Lewell-Buck it is further testimony to what females with dyspraxia/DCD can achieve even when the odds are stacked against them. As Payne says, ‘So many of them will go on to prove to everyone that dyspraxia is not going to stand in their way of achieving their goals!’
And who better than the MP for South Shields to show how ambitious those goals can be. As Hewell-Buck told Special World:
‘I’m always proud to support the Dyspraxia Foundation and Dyspraxia Awareness week. Growing up with undiagnosed dyspraxia it always frustrated me that the things that seemed easy to other kids were such a struggle for me. Once I found out about my condition everything made a lot more sense.
‘I don’t feel like dyspraxia has held me back, and my message to people has always been that having dyspraxia doesn’t make you better or worse than other people – just different. People like us can make a big difference in the world, because we don’t think the same way as everyone else and we approach things from a different angle.
‘The important thing for teachers and employers is to recognise that people with dyspraxia have enormous potential; they just need the right support to achieve it. That’s one of the great things the Dyspraxia Foundation does – getting support to the people who need it and helping to train teachers how to recognise dyspraxia.
‘The theme of this year’s Awareness Week was the gap between diagnosis and support for boys and girls. I think that because dyspraxia is more common in boys people tend to recognise it more easily than they do in girls. That might be why it took people so long to pick up on mine. It’s great to see the Dyspraxia Foundation highlighting this gap, because it’s not something that gets talked about very often. Awareness Week is all about putting things on the agenda and getting members of the public to think about issues they may not have considered before, so this year’s theme was a great choice.’