New findings released today [Monday 12 October 2015] have revealed a significant gap in the diagnosis – and therefore, treatment – of dyspraxia, otherwise known as developmental co-ordination disorder (DCD), amongst young women and girls.
The nationwide poll1 , commissioned by the Dyspraxia Foundation, reported 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). 47% of teenage girls reported the same situation in secondary school, as opposed to 32% of males.
Experts from the Dyspraxia Foundation – the only national charity in the UK dedicated to raising awareness of the condition – believe such findings may reflect teachers’ perceptions of dyspraxia as a largely “male” disorder, leaving girls often overlooked in the classroom. It may also be possible that girls with dyspraxia are simply better at masking their difficulties by putting in extra effort and recruiting the assistance of friends to help them cope.
Once cruelly and incorrectly referred to as ‘clumsy child’ syndrome, dyspraxia / DCD is a common disorder affecting 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 which can have a significant, negative impact on everyday activities. Dyspraxia can also affect articulation and speech.
The national survey questioned 1156 people (537 were individuals with dyspraxia; 619 were parents of someone with dyspraxia). Although the average age for diagnosis of dyspraxia / DCD is 7 to 8 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 who revealed their gender, 69% (320) were female and 31% (147) male. For the ‘child’ population the figures were almost exactly opposite (73% had sons, 28% had daughters), reinforcing the argument that dyspraxia/DCD is under-recognised in girls – who will often have to wait until adulthood before being diagnosed.
The findings also indicate that the ratio of boys:girls who receive a positive diagnosis of dyspraxia / DCD in childhood is around 3:1 – whilst existing evidence (Lingham et al 2009) 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.
Sally Payne, Paediatric Occupational Therapist and Trustee of the Dyspraxia Foundation comments; “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.
“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.”
That’s why the Dyspraxia Foundation will be focusing on “the gender gap” for its 2015 Awareness Week during October. Thanks to a three-year £166,265 grant from the Big Lottery Fund, the charity has been able to re-launch its helpline and employ an Information Officer. Last year, a dedicated Youth Information Officer was also appointed and Awareness Week 2015 will now see the launch of a new ‘Advice for Girls” information pack as part of the annual campaign.
Sally Payne continues; “Whilst this comprehensive survey has flagged up some very real issues which must be addressed by schools, families and support services, it’s also vital that we are not too disheartened by some of the negative findings – and remember that the team at the Dyspraxia Foundation is always here to help both young men and women as they come to terms with a diagnosis! 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!”
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.
Emma Lewell-Buck MP (South Shields) is an ambassador for the Dyspraxia Foundation. She was diagnosed with the condition herself, aged 27 whilst studying for her Masters in Social Work and – despite being a hugely positive advocate of how dyspraxia must ‘never stop a young person’s dreams’ – she has also talked openly about the challenges she faced prior to her diagnosis.
Speaking in an interview2, Emma once explained; “I can’t wear eyeliner because you’ve got to have a steady hand. Every time I try, I end up with a big line down my face. If I got straighteners, you can guarantee I would burn myself. I was struggling but stuff like this wasn’t on the agenda when I was at school, so I often got dragged into misbehaving. Really it was a way of saying, ‘I can’t do this and I don’t know why because no-one is helping.”
Emma Lewell-Buck MP is available to speak to the media on behalf of the charity and the 2015 campaign, along with the Dyspraxia Foundation’s newly announced Patron, Jamie Lambert, from the award winning band, “Collabro”. Jamie also has dyspraxia – although unlike Emma, was diagnosed whilst at school, aged 14.
Both will be attending the charity’s Parliamentary Reception during Dyspraxia Awareness Week on Wednesday 14 October, 4-6pm.
For more media / survey information, to set up an interview with a case study or an expert, please call Jo Hudson or Francesca Levi on 020 7112 4905 / 0770 948 7959 firstname.lastname@example.org
For more information about the ongoing work of the Dyspraxia Foundation and how to become involved or access help, information and advice, please visit www.dyspraxiafoundation.org.uk / @DYSPRAXIAFDTN
Note to editors:
1 The survey ran from 70 days from 8 June – 31 August 2015 and was promoted via the Dyspraxia Foundation website, Facebook and social media. There were 1156 respondents: 537 were individuals with dyspraxia; 619 were the parent/ carer of someone with dyspraxia.
2 Daily Telegraph, September 28th, 2013
Dyspraxia / DCD affects around 5% of the population (2%, severely) and can sometimes run in families. There are believed to be one to two children affected in every class of 30 children.
This survey reveals for the first time the impact of dyspraxia on girls and women. Our findings suggest that females with dyspraxia are missing from previous research because they are not referred for diagnosis as children while many find it hard to access diagnostic and support services as adults. As a result the support needs of girls and women with dyspraxia are poorly understood. Dyspraxia Foundation hopes to address this issue by focusing on girls and women during Dyspraxia Awareness Week 2015.
The female survey respondents were extremely generous in sharing their personal stories and experiences. Here are just a few examples below:
“I think the way a women looks is more important in society than a man’s looks. Managing my personal appearance and grooming is extremely hard”
“I don’t wear make-up as I have never mastered getting it on without looking like a clown. I haven’t been able to master hair straighteners. As a child I was always told I was unkempt”
“I struggle with hair care, dress sense, fastening buttons and shoelaces, oral hygiene and shaving. I can style my own hair but not the back. I never manage to pick out my own clothes – I have a friend do that for me.”
“I struggle with fabric feeling and tightness. I open my wardrobe and have a meltdown most mornings as I can’t figure out what to wear and how. Especially taking into account shoes and the weather and the days plans”
“I find it difficult to shave but my greatest difficulty is brushing my hair. I am very sensitive to the feel of the brush and I am embarrassed about the fact that I find it difficult to even tie it in a neat pony-tail.”
“I am terrible at putting on lipstick accurately and I rarely bother. I gave up on shaving altogether because I kept cutting myself and moved over to Immac. My dress sense is fine (I assume anyway) but I am good at putting my clothes on inside-out or buttons up wrongly and not noticing until it is pointed out.”
“People think females should be more caring and empathic which I am. What I’m not is a mind reader so being more subtle doesn’t work with me. I need clear instructions”
“I find social interaction difficulty and exhausting. I recently told my mum this and she wouldn’t believe me because over the years I have mastered how to mask my anxieties. I have been called “flaky” by a friend because I make plans with friends with the intention of going but then this becomes and stressful and I cancel. An example being going for dinner – I find eating in public an embarrassment because if I ate at the same speed as my friends I’d have my food everywhere other than my mouth!”
“People often tell me I speak too loudly/quietly and mock the way I speak, asking if I’ve been drinking. I try to pass it off as a quirk but really I feel embarrassed”
“I feel that dyspraxia has a significant adverse effect on my romantic/sexual life. I struggle with flirting (and dancing!!), I have no idea when people are flirting with me (my friends have to tell me at the end of the night) and I’m not sure how to respond when I do read signals correctly.”
“Using products for periods can be very difficult like using tampons etc and no-one talks about it so it’s hard to get help”
“This is very intimate and embarrassing, but I have many times not remembered to remove tampons or put two in. I have panicked and spent time in the sexual health clinic. I never remember when my cycle is, so that presents obvious problems.
“Medication such as the pill has not been manageable – I just forget, sometimes I don’t take any, other times my partner notices me taking it three times in one hour.”
“Hormonal changes as part of the menstrual cycle often make keeping track of things/organisation harder for a lot of women. Couple this with dyspraxia and it becomes a nightmare!”
“Menstruation will be difficult. She still can’t shower by herself, changing sanitary pads will be difficult”
“Pregnancy is a nightmare as my dyspraxia is much, much worse when I’m pregnant”
“I found the experience of giving birth in a hospital frightening and overwhelming. Not the giving birth, but the intrusion into my personal space and the prodding around, plus the environment was very brightly lit”
“My parenting challenges are not understood by other mothers, professionals or myself at times. Managing a buggy, getting cross around meal times, struggling to prepare food and multitasking with 2 kids”
“Parenting was difficult as I have trouble multi-tasking, can’t drive, couldn’t assemble baby equipment or put nappies on easily”
“When I was younger I put a lot of energy into hiding my difficulties and it left me stressed, exhausted. As a result I because very socially avoidant. Diagnosis in my early 20’s helped me over the years to feel brave enough to tell people I had specific difficulties and though sometimes I was told I was making excuses for being careless or stupid, on the whole most people have been understanding once dyspraxia was explained to them”